tag:blogger.com,1999:blog-37785213353469013372024-03-05T07:59:37.592+00:00D4DementiaBethhttp://www.blogger.com/profile/09727279217918012517noreply@blogger.comBlogger246125tag:blogger.com,1999:blog-3778521335346901337.post-64514011651611784742020-05-20T09:00:00.000+01:002020-05-20T14:02:21.906+01:00D4Dementia has moved!<h2>
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Bethhttp://www.blogger.com/profile/09727279217918012517noreply@blogger.com0United Kingdom55.378051 -3.43597312.203021 -86.0531605 90 79.1812145tag:blogger.com,1999:blog-3778521335346901337.post-24126604529101077282020-04-20T09:00:00.001+01:002020-04-24T08:16:02.490+01:00Coronavirus and being isolated from a loved one <div class="MsoNormal" style="border: none; font-family: "Times New Roman", serif; margin: 0cm 0cm 0.0001pt;">
<span style="font-family: "calibri" , sans-serif; font-size: 13pt;">Last month I wrote about the coronavirus pandemic and answered two questions families supporting a loved one are grappling with: </span><a href="http://d4dementia.blogspot.com/2020/03/coronavirus-and-living-with-dementia_27.html" style="font-family: Calibri, sans-serif; font-size: 13pt;" target="_blank">How do we hand-wash more and how do we self-isolate?</a></div>
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<span lang="EN-US" style="font-family: "calibri" , sans-serif; font-size: 13pt;">For families who aren’t in the same household, however, they are living through many weeks, which may potentially become months, without physically seeing their loved ones. If a family member is in a care home that isolation period may be the longest any of us experience, since care homes are - as we have seen - incredibly vulnerable to coronavirus outbreaks. </span></div>
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<span lang="EN-US" style="font-family: "calibri" , sans-serif; font-size: 13pt;">Indeed, the impact of coronavirus on care homes and the devastation being wreaked in terms of illness and death amongst residents (as well as the huge risks many staff are taking if they don’t have adequate personal protective equipment) is on a scale that even on the current estimations is truly horrific.<o:p></o:p></span><br />
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<span lang="EN-US" style="font-family: "calibri" , sans-serif; font-size: 13pt;"><b>Fears for a loved one in a care home</b></span></div>
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<span lang="EN-US" style="font-family: "calibri" , sans-serif; font-size: 13pt;">For numerous families, reading these stories will only magnify their own immense fears for the health of their loved ones in care homes, and many will feel utterly powerless and dreading every ring on their phone. Although we never lived through anything like this with my dad, there is no doubt that I know the fear of illness well, since dad was hospitalised numerous times in the last nine years of his life. <o:p></o:p></span></div>
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<span lang="EN-US" style="font-family: "calibri" , sans-serif; font-size: 13pt;">For us, the dreaded phone calls would often come in the middle of the night and would usually be because dad had a worsening chest or bladder infection. Time after time dad pulled through until the last, catastrophic bout of pneumonia that eventually overwhelmed him.<o:p></o:p></span></div>
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<span lang="EN-US" style="font-family: "calibri" , sans-serif; font-size: 13pt;">With care homes currently in strict lockdowns, the ban on visiting has both emotional and practical ramifications. The longest I ever went without seeing my dad during his nine years in care homes would have been around three weeks when one of his care homes had a norovirus outbreak, and it was characterised by constant worry.</span></div>
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<span lang="EN-US" style="font-family: "calibri" , sans-serif; font-size: 13pt;">Fast forward to 2020, and most families are faced with being apart for far longer. The pain this separation will be causing many people was something I thought about whilst reflecting on my dad’s 93rd birthday earlier this month. We were lucky to be able to spend every birthday with my dad, but so many people will be unable to do that during this pandemic. <o:p></o:p></span></div>
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<span lang="EN-US" style="font-family: "calibri" , sans-serif; font-size: 13pt;">The stark feeling facing many families will be the anxiety that it could be their loved one’s last birthday and they won’t have those memories of being together. Whilst this may sound trivial to some in the face of the threat of coronavirus, the loss of the celebration of these milestones together only enforces the painful separation. And of course if a loved one is approaching the end of their life and you aren’t able to see them, the effect on grieving families is immense. We can buy many things and do a huge amount as 21st century citizens, but we cannot buy time, nor replace the physical touch of hand in hand or cheek on cheek.<o:p></o:p></span><br />
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<span lang="EN-US" style="font-family: "calibri" , sans-serif; font-size: 13pt;"><b>Ways to keep in touch with your loved one when you are apart</b></span></div>
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<span lang="EN-US" style="font-family: "calibri" , sans-serif; font-size: 13pt;">Much has been said about the power of the digital world to bridge the yawning chasm many families are feeling, and it is undoubtedly the best option for at least seeing each other’s faces and hearing each other’s voices through mediums like Skype, FaceTime and Zoom.<o:p></o:p></span></div>
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<span lang="EN-US" style="font-family: "calibri" , sans-serif; font-size: 13pt;">More traditional options like sending letters, cards and photographs might seem less appealing, but for the older generation and particularly if someone’s dementia is advancing, these might be more understandable and recognisable than digital options. <o:p></o:p></span></div>
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<span lang="EN-US" style="font-family: "calibri" , sans-serif; font-size: 13pt;">Bear in mind too that as someone’s dementia progresses, a phone call may be incredibly difficult for them to contribute to as it contains none of the visual clues, like mouth movements and body language, that can help the person to understand what you are staying. And of course they cannot see you, so simply saying who you are may not be enough of a reminder.<o:p></o:p></span></div>
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<span lang="EN-US" style="font-family: "calibri" , sans-serif; font-size: 13pt;">If you are wanting to do something more for your loved one than just keeping in touch, these would be my top three suggestions:</span></div>
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<li><span style="font-family: "calibri" , sans-serif; font-size: 13pt;">Make a <a href="http://d4dementia.blogspot.com/2016/09/life-story-work-gift-that-keeps-on.html" target="_blank">life story</a> resource. It may be that one of your lockdown projects is to sort through old photographs or memorabilia at home, or do some family tree research. Commit to creating a life story resource from items you may have at home, or things you can find online about your loved one’s life. You could turn these items (using copies of any precious originals) into a life story book, box, collage for a wall or other resource. You could be more creative too, as this care worker was when she had <a href="https://news.sky.com/video/care-home-residents-joy-at-thoughtful-gift-a-pillow-featuring-deceased-wifes-face-11976459" target="_blank">a cushion</a> created for a gentleman who was missing his late wife. And don’t wait until you see your loved one</span><span style="font-family: "calibri" , sans-serif; font-size: 13pt;"> to give them your life story gifts - research an affordable door-to-door courier (examples </span><a href="https://www.parcel2go.com/services/collection-services" style="font-family: calibri, sans-serif; font-size: 13pt;" target="_blank">here</a><span style="font-family: "calibri" , sans-serif; font-size: 13pt;">) and make it a lovely surprise for your relative to open during this lockdown.</span></li>
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<li><span style="font-family: "calibri" , sans-serif; font-size: 13pt;">Make a <a href="https://musicfordementia2020.com/2019/12/04/create-a-playlist-listen-to-recorded-music/" target="_blank">playlist</a>. If you know the music your loved one enjoys</span><span style="font-family: "calibri" , sans-serif; font-size: 13pt;">, begin a playlist for them. If you are unsure of some details, liaise with staff and make it a three</span><span style="font-family: "calibri" , sans-serif; font-size: 13pt;">-way remote project between yourself, your loved one and the care worker(s) supporting them.</span></li>
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<li><span style="font-family: "calibri" , sans-serif; font-size: 13pt;">Send a food parcel, or package up favourite cosmetics, clothing, books, magazines, cd’s, dvd’s, hobby materials or other things your loved one will enjoy receiving. There are lots of things you can order online and have them delivered straight to your loved one, or get some extra items with your grocery shop, package them up and send them via a door-to-door courier. Again, this will make a lovely surprise.</span></li>
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<span lang="EN-US" style="font-family: "calibri" , sans-serif; font-size: 13pt;">All of these ideas, of course, won’t ever replace that personal contact, but in the face of the current restrictions I hope families will find comfort in being able to do something practical to feel more useful and to ease those long days until they meet again.<o:p></o:p></span></div>
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<span lang="EN-US" style="font-family: "calibri" , sans-serif; font-size: 13pt;">Next month I will continue to look at the issues raised by the coronavirus pandemic. </span><span style="font-family: "calibri" , sans-serif; font-size: 13pt;">Until then:</span></div>
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<li><span style="font-family: "calibri" , sans-serif; font-size: 13pt;">Keep safe</span></li>
<li><span style="font-family: "calibri" , sans-serif; font-size: 13pt;">Stay at home</span></li>
<li><span style="font-family: "calibri" , sans-serif; font-size: 13pt;">Keep your distance from others</span></li>
<li><span style="font-family: "calibri" , sans-serif; font-size: 13pt;">Look after yourselves</span></li>
<li><span style="font-family: "calibri" , sans-serif; font-size: 13pt;">And stay well.</span></li>
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<span style="font-family: "calibri";"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgsOI0iIn3PacRD2fega0JbUk0-IzyWXIPF6blh3Z-oyEiztOjQJXcVg53N4U502C4LdpzAgxKBQMJBttzEjtaiO0qopfMUQGw2KilN_JSbqu0tPpm-fzQvA2cumDnoaA7R4M4Qy6QFgERd/s1600/01signature.jpg" imageanchor="1" style="clear: left; color: #b63846; float: left; margin-bottom: 1em; margin-right: 1em; text-decoration: none;"><img alt="Beth x" border="0" height="98" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgsOI0iIn3PacRD2fega0JbUk0-IzyWXIPF6blh3Z-oyEiztOjQJXcVg53N4U502C4LdpzAgxKBQMJBttzEjtaiO0qopfMUQGw2KilN_JSbqu0tPpm-fzQvA2cumDnoaA7R4M4Qy6QFgERd/s200/01signature.jpg" style="-webkit-box-shadow: rgba(0, 0, 0, 0.2) 0px 0px 0px; border-bottom-left-radius: 0px; border-bottom-right-radius: 0px; border-top-left-radius: 0px; border-top-right-radius: 0px; border: 1px solid transparent; box-shadow: rgba(0, 0, 0, 0.2) 0px 0px 0px; padding: 8px; position: relative;" title="Beth x" width="200" /></a></span></div>
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<span lang="EN-US"><span style="font-family: "open sans"; font-size: 13px;"><span style="font-family: "calibri";"></span></span><br style="font-family: "Open Sans"; font-size: 13px;" /><span style="font-family: "open sans"; font-size: 13px;"><span style="font-family: "calibri";"></span></span><br style="font-family: "Open Sans"; font-size: 13px;" /><span style="font-family: "helvetica neue";"><br /></span><span style="background-color: white; font-family: "open sans"; font-size: 13px;"></span><span style="font-family: "helvetica neue";">You can follow me on Twitter: <a href="https://twitter.com/bethyb1886" style="color: #b63846; text-decoration: none;" target="_blank">@bethyb1886</a></span><br style="font-family: "Open Sans"; font-size: 13px;" /><span style="font-family: "helvetica neue";"><a href="https://www.facebook.com/D4Dementia/" style="color: #b63846; text-decoration: none;" target="_blank">Like D4Dementia on Facebook</a></span></span></div>
Bethhttp://www.blogger.com/profile/09727279217918012517noreply@blogger.com0tag:blogger.com,1999:blog-3778521335346901337.post-74307672233196346922020-03-23T09:00:00.002+00:002020-03-30T16:53:56.752+01:00Coronavirus and living with dementia - Coping in unprecedented times<div class="MsoNormal" style="font-size: medium; line-height: 19.200000762939453px;">
<span style="font-family: "calibri" , sans-serif; font-size: 13pt;">It’s not easy to know where to begin with a blog on the current monumentally uncertain times that the world is facing, but I’m going to attempt to address the coronavirus disaster (I don’t think the word crisis goes far enough) in this and subsequent blogs as we all try to adjust to the unprecedented circumstances we find ourselves in.</span></div>
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<span lang="EN-US" style="font-family: "calibri" , sans-serif; font-size: 13pt; line-height: 20.799999237060547px;">Firstly, way back (well it seems like a long time ago now!) when we first heard about this virus in December and as it escalated into January, it frightened me. Reports of the pneumonia it causes sent a shudder through me with vivid recollections of how my father - over a period of around a month - fought and died, drowning from the inside as his lungs filled with fluid. <o:p></o:p></span></div>
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<b><span lang="EN-US" style="font-family: "calibri" , sans-serif; font-size: 13pt; line-height: 20.799999237060547px;">Anyone who thinks this is a trivial disease is so incredibly misguided and, in common with experts and governments around the world, I have one simple message: <a href="https://www.nhs.uk/conditions/coronavirus-covid-19/" target="_blank">STAY AT HOME AND SAVE LIVES</a>. <o:p></o:p></span></b></div>
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<span lang="EN-US" style="font-family: "calibri" , sans-serif; font-size: 13pt; line-height: 20.799999237060547px;">I appreciate, however, that the fundamental change to the only way of life most, if not all, of us have ever known is a huge ask. I’m having to do it - currently self-isolating with my mum (who is 80) and trying to keep a 4-year-old entertained while I devote my working time to writing as all of my consultancy work is indefinitely postponed. It’s not easy, and if you are supporting a loved one with dementia, it will be even harder. <o:p></o:p></span></div>
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<span lang="EN-US" style="font-family: "calibri" , sans-serif; font-size: 13pt; line-height: 20.799999237060547px;">I’ve been asked a few questions by families in this position over the last few weeks, and in this blog (and others) I will share my answers:<o:p></o:p></span></div>
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<b><span lang="EN-US" style="font-family: "calibri" , sans-serif; font-size: 13pt; line-height: 20.799999237060547px;">Help! How do we hand-wash more?<o:p></o:p></span></b></div>
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<span lang="EN-US" style="font-family: "calibri" , sans-serif; font-size: 13pt; line-height: 20.799999237060547px;">I know lots of people are struggling with this simply because A) a person with dementia may not remember to wash their hands, and B) even if the person remembers, they may be unsure of how to wash their hands or not do it with the thoroughness and for the length of time needed.<o:p></o:p></span></div>
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<span lang="EN-US" style="font-family: "calibri" , sans-serif; font-size: 13pt; line-height: 20.799999237060547px;">In his years living at home before his diagnosis, my dad struggled with personal hygiene, and although his care homes tried to remedy this, hand washing wasn’t frequent. Dad’s hands often looked dirty, even when he was about to be given a meal, mostly from remnants of old food or possibly even where he had put his hand into his incontinence pad. This was particularly noticeable once he was immobile.<o:p></o:p></span></div>
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<span lang="EN-US" style="font-family: "calibri" , sans-serif; font-size: 13pt; line-height: 20.799999237060547px;">So, this is a very real problem even before coronavirus magnified the need for scrupulous hand-washing. Some key points to remember to support a person living with dementia who is struggling with hand washing:</span></div>
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<li><span style="font-family: "calibri" , sans-serif; font-size: 13pt;">Is it clear where the washing facilities are? Signage around the home can help the person to navigate their way to the bathroom or cloakroom to wash their hands.</span><span style="font-family: "calibri" , sans-serif; font-size: 13pt;"> </span></li>
<li><span style="font-family: "calibri" , sans-serif; font-size: 13pt;">Once inside the bathroom or cloakroom, is it clear where the basin, taps and soap are? Try to have contrasting colours to make it more obvious.</span></li>
<li><span style="font-family: "calibri" , sans-serif; font-size: 13pt;">Does the person know how to turn the taps on, how to get soap out of the dispenser, and do they remember how to wash their hands? Again, signage (pictures and words) can help to jog the person’s memory and support them to remain independent.</span></li>
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<span lang="EN-US" style="font-family: "calibri" , sans-serif; font-size: 13pt; line-height: 20.799999237060547px;">If the person is immobile, try what I used to do with my dad:<o:p></o:p></span></div>
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<li><span style="font-family: "calibri" , sans-serif; font-size: 13pt;">I’d get a bowl of warm, soapy water and put it on a table in-front of dad or on his lap if he was calm.</span><span style="font-family: "calibri" , sans-serif; font-size: 13pt;"> </span></li>
<li><span style="font-family: "calibri" , sans-serif; font-size: 13pt;">We’d both put our hands in together, and using extra soap I’d gently wash his hands and wrists and scrub under his nails, taking my time and making it a relaxing experience.</span></li>
<li><span style="font-family: "calibri" , sans-serif; font-size: 13pt;">I’d then put dad’s hands into a towel, go and change the water for fresh, clean warm water and return to rinse his hands before doing a final dry on another clean towel.</span></li>
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<span lang="EN-US" style="font-family: "calibri" , sans-serif; font-size: 13pt; line-height: 20.799999237060547px;">It wasn’t a quick process, but very effective, especially for soaking off stuck on dirt, and from a sensory perspective it was lovely to both have our hands in warm soapy water together. I doubt from a virus prevention perspective it would be anywhere near as efficient as washing under running water as we’ve all been told to do, but if the person is immobile and it’s not possible to get them to a basin it would be better than no hand washing at all.<o:p></o:p></span></div>
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<span lang="EN-US" style="font-family: "calibri" , sans-serif; font-size: 13pt; line-height: 20.799999237060547px;">For a person with dementia who dislikes the feeling of water, hand sanitiser (with alcohol) is an alternative to hand washing. Sanitiser is, though, in short supply and I’ve had zero success finding any of this for our household.<o:p></o:p></span></div>
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<b><span lang="EN-US" style="font-family: "calibri" , sans-serif; font-size: 13pt; line-height: 20.799999237060547px;">Help! How do we self-isolate?<o:p></o:p></span></b></div>
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<span lang="EN-US" style="font-family: "calibri" , sans-serif; font-size: 13pt; line-height: 20.799999237060547px;">Many people with dementia will be living with other conditions like heart or lung problems that make them particularly at risk from coronavirus, or indeed their age will be a risk-factor. Avoiding developing this virus is by far the best policy, but self-isolation carries many challenges for a person who is already confused and frightened. My tips to support each other include:</span></div>
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<li><span style="font-family: "calibri" , sans-serif; font-size: 13pt;">Avoid an overload of tension and a desire to ‘get out’ from all members of a household by having a consistent routine and lots of things to focus on each day.</span><span style="font-family: "calibri" , sans-serif; font-size: 13pt;"> </span></li>
<li><span style="font-family: "calibri" , sans-serif; font-size: 13pt;">Support a person with dementia to engage in hobbies they like or indeed to try new activities. If you need materials to support hobbies or activities, look online to see what can be delivered. Stores like <a href="https://www.hobbycraft.co.uk/" target="_blank">Hobbycraft</a></span><span style="font-family: "calibri" , sans-serif; font-size: 13pt;"> offer home</span><span style="font-family: "calibri" , sans-serif; font-size: 13pt;"> delivery, but it will take longer than usual for your items to arrive (and of course there are lots of other arts and crafts websites too).</span></li>
<li><span style="font-family: "calibri" , sans-serif; font-size: 13pt;">An internet connection can be invaluable in terms of being able to keep in touch with family and friends via video calls or messaging, and so many services - like singing groups or exercises classes - are now being streamed online. These are at set times and are brilliant for helping to add structure to a day at home. Some other examples to try:</span></li>
<ul>
<li><span style="font-family: "calibri" , sans-serif; font-size: 13pt;">Join the fabulous Wendy Mitchell for her <a href="https://www.eventbrite.co.uk/o/rachel-niblock-uk-deep-network-coordinator-29522530163" target="_blank">‘Web with Wendy’</a> sessions (the next sessions are 31 March and 2 April)</span><span style="font-family: "calibri" , sans-serif; font-size: 13pt;">. Wendy says of these sessions: “I would like to invite you to a virtual cuppa on the web to discuss anything and everything....no questions out of bounds....”</span></li>
<li><span style="font-family: "calibri" , sans-serif; font-size: 13pt;">Participate in laughter yoga, designed to put a smile on participants faces during these testing times. Find out more about <a href="https://www.facebook.com/everybodylaughtogether" target="_blank">Everybody Laugh Together on their Facebook page</a>. </span></li>
<li><span style="font-family: "calibri" , sans-serif; font-size: 13pt;">Try some of the numerous virtual tours of museums, galleries, gardens and so much more in the UK and abroad. Do an internet search for the type of virtual tour you are interested in and be immersed in another world.</span></li>
</ul>
<li><span style="font-family: "calibri" , sans-serif; font-size: 13pt;">You could also consider modifying some of the things we’ve been asked to do as a family:</span></li>
<ul>
<li><span style="font-family: "calibri" , sans-serif; font-size: 13pt;">We’ve had requests for our daughter’s artwork to be sent to some of my care home clients - there is no reason why adult artwork wouldn’t be just as gratefully received.</span><span style="font-family: "calibri" , sans-serif; font-size: 13pt;"> </span></li>
<li><span style="font-family: "calibri" , sans-serif; font-size: 13pt;">My writing skills are being requested for everything from pen-pal services to life story research. Again, there is no reason why a person living with dementia at home, supported by their partner or family, couldn’t become a pen-pal for a person in a care home and mutually reminisce together.</span></li>
</ul>
</ul>
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<span lang="EN-US" style="font-family: "calibri" , sans-serif; font-size: 13pt; line-height: 20.799999237060547px;">Next month I will look more in-depth at how families can cope when their loved one is in a care home in isolation. Until then:</span><br />
<ul>
<li><span style="font-family: "calibri" , sans-serif; font-size: 13pt;">Keep safe</span></li>
<li><span style="font-family: "calibri" , sans-serif; font-size: 13pt;">Stay at home</span></li>
<li><span style="font-family: "calibri" , sans-serif; font-size: 13pt;">Keep your distance from others</span></li>
<li><span style="font-family: "calibri" , sans-serif; font-size: 13pt;">Don’t panic buy</span></li>
<li><span style="font-family: "calibri" , sans-serif; font-size: 13pt;">Look after yourselves</span></li>
<li><span style="font-family: "calibri" , sans-serif; font-size: 13pt;">And stay well.</span></li>
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<span style="font-family: "calibri";"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgsOI0iIn3PacRD2fega0JbUk0-IzyWXIPF6blh3Z-oyEiztOjQJXcVg53N4U502C4LdpzAgxKBQMJBttzEjtaiO0qopfMUQGw2KilN_JSbqu0tPpm-fzQvA2cumDnoaA7R4M4Qy6QFgERd/s1600/01signature.jpg" imageanchor="1" style="clear: left; color: #b63846; float: left; margin-bottom: 1em; margin-right: 1em; text-decoration: none;"><img alt="Beth x" border="0" height="98" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgsOI0iIn3PacRD2fega0JbUk0-IzyWXIPF6blh3Z-oyEiztOjQJXcVg53N4U502C4LdpzAgxKBQMJBttzEjtaiO0qopfMUQGw2KilN_JSbqu0tPpm-fzQvA2cumDnoaA7R4M4Qy6QFgERd/s200/01signature.jpg" style="-webkit-box-shadow: rgba(0, 0, 0, 0.2) 0px 0px 0px; border-bottom-left-radius: 0px; border-bottom-right-radius: 0px; border-top-left-radius: 0px; border-top-right-radius: 0px; border: 1px solid transparent; box-shadow: rgba(0, 0, 0, 0.2) 0px 0px 0px; padding: 8px; position: relative;" title="Beth x" width="200" /></a></span></div>
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<span lang="EN-US"><span style="font-family: "open sans"; font-size: 13px;"><span style="font-family: "calibri";"></span></span><br style="font-family: "Open Sans"; font-size: 13px;" /><span style="font-family: "open sans"; font-size: 13px;"><span style="font-family: "calibri";"></span></span><br style="font-family: "Open Sans"; font-size: 13px;" /><span style="font-family: "helvetica neue";"><br /></span><span style="background-color: white; font-family: "open sans"; font-size: 13px;"></span><span style="font-family: "helvetica neue";">You can follow me on Twitter: <a href="https://twitter.com/bethyb1886" style="color: #b63846; text-decoration: none;" target="_blank">@bethyb1886</a></span><br style="font-family: "Open Sans"; font-size: 13px;" /><span style="font-family: "helvetica neue";"><a href="https://www.facebook.com/D4Dementia/" style="color: #b63846; text-decoration: none;" target="_blank">Like D4Dementia on Facebook</a></span></span></div>
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</style>Bethhttp://www.blogger.com/profile/09727279217918012517noreply@blogger.com0United Kingdom55.378051 -3.43597312.203021 -86.0531605 90 79.1812145tag:blogger.com,1999:blog-3778521335346901337.post-85667805296207396212020-02-24T09:00:00.000+00:002020-02-24T17:35:15.662+00:00Who is really challenging?<div class="Default" style="border: none; font-family: "Helvetica Neue"; font-size: 11pt; margin: 0cm 0cm 0.0001pt;">
<span lang="EN-US" style="background-color: white; color: #1c1e21; font-family: "calibri" , sans-serif; font-size: 13pt;">As regular readers of D4Dementia will know, I’ve long been a supporter (including through the <a href="https://bethbritton.com/2015/03/20/dementia-words-matter-call-to-action/" target="_blank">National Dementia Action Alliance Campaign 'Dementia Words Matter'</a>) </span><span lang="EN-US" style="background-color: white; color: #1c1e21; font-family: "calibri" , sans-serif; font-size: 13pt;">of using respectful language - as defined by people living with dementia - when communicating about dementia. I believe that from language comes attitudes, and of course how people are treated is then heavily influenced by those attitudes. So, in short, <a href="https://www.alliance-scotland.org.uk/blog/opinion/how-words-can-make-or-break-us/" target="_blank">it's about more than just words</a>.</span></div>
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<span lang="EN-US" style="background-color: white; color: #1c1e21; font-family: "calibri" , sans-serif; font-size: 13pt;">Sadly, since I (and many others) have been banging this drum nowhere near enough has changed. I’ve mostly given up with the sensationalised headlines that newspapers favour. Journalists are often expected to write a certain type of copy, and as a writer myself I have sometimes had to refuse assignments when what is asked for isn’t something I’m prepared to deliver, but I have also found chances to educate with other publications.<o:p></o:p></span></div>
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<span lang="EN-US" style="background-color: white; color: #1c1e21; font-family: "calibri" , sans-serif; font-size: 13pt;">Late last year I had a request to endorse a new book on dementia, written by a doctor, that seemed on the face of it to be an interesting opportunity to read a new publication prior to its release. Sadly, however, I had to withdraw from potentially making an endorsement when I saw references to ‘BPSD’ (Behavioural and Psychological Symptoms of Dementia) and ‘wandering' on an initial quick scan through (I would recommend reading about the #BanBPSD campaign as detailed on <a href="https://kateswaffer.com/2019/11/29/normal-human-responses-beyondbpsd/" target="_blank">Kate Swaffer's blog</a> </span><span lang="EN-US" style="background-color: white; color: #1c1e21; font-family: "calibri" , sans-serif; font-size: 13pt;">for more information on this terminology).<o:p></o:p></span></div>
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<span lang="EN-US" style="background-color: white; color: #1c1e21; font-family: "calibri" , sans-serif; font-size: 13pt;">The only good thing to come from this book-reviewing experience was the opportunity to signpost the publishers to the gold-standard in <a href="https://www.dementia.org.au/files/resources/dementia-language-guidelines.pdf" target="_blank">dementia language guidelines</a>, </span><span lang="EN-US" style="background-color: white; color: #1c1e21; font-family: "calibri" , sans-serif; font-size: 13pt;">a recommendation that was well-received although I suspect it was too late to change the copy in the book. I was perhaps naive - I know the medical profession are trained using language that, more often than not, isn’t reflective of the ways in which people living with dementia would like to be described, but I had expected attitudes might have modernised somewhat by now.<o:p></o:p></span></div>
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<span lang="EN-US" style="background-color: white; color: #1c1e21; font-family: "calibri" , sans-serif; font-size: 13pt;">In my training and mentoring work I have a clear language benchmark for health and social care staff. I ask them to go through a checklist whenever they are going to write or speak about someone with dementia that includes:</span></div>
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<li><span style="background-color: white; color: #1c1e21; font-family: "calibri" , sans-serif; font-size: 13pt;">Would I be happy to say what I’m going to say to the person directly?</span></li>
<li><span style="background-color: white; color: #1c1e21; font-family: "calibri" , sans-serif; font-size: 13pt;">Would I be happy for the person to read what I’m going to write about them?</span></li>
<li><span style="background-color: white; color: #1c1e21; font-family: "calibri" , sans-serif; font-size: 13pt;">What do I think the person would say? (Thinking not just about the person’s current health but how they might have felt before they had dementia)</span></li>
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<span style="background-color: white; color: #1c1e21; font-family: "calibri" , sans-serif; font-size: 13pt;">And perhaps most crucially of all:</span><br />
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<li><span style="background-color: white; color: #1c1e21; font-family: "calibri" , sans-serif; font-size: 13pt;">If I was this person, would I be happy to be spoken or written about using the words I’m thinking of using?</span></li>
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<span style="background-color: white; color: #1c1e21; font-family: "calibri" , sans-serif; font-size: 13pt;">If you answer negatively to any of these questions, change your words, it’s as simple as that. And interestingly, by changing language it really does start to change attitudes, as I’ve witnessed when care plans have been radically altered, staff practice has become more open-minded and responsive, and the experiences of individuals living with dementia have improved as a result.</span><br />
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<span lang="EN-US" style="background-color: white;"><b><span style="color: #1c1e21; font-family: "calibri" , sans-serif;"><span style="font-size: 13pt;">Do you still use the term 'challenging behaviour'?</span></span></b></span></div>
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<span lang="EN-US" style="background-color: white; color: #1c1e21; font-family: "calibri" , sans-serif; font-size: 13pt;">Perhaps the most divisive terminology that I still see is ‘challenging behaviour’, which was brilliantly addressed in <a href="https://whichmeamitoday.wordpress.com/2020/01/31/a-trundle-to-portsmouth-hospital/" target="_blank">a blog Wendy Mitchell wrote</a></span><span lang="EN-US" style="background-color: white; color: #1c1e21; font-family: "calibri" , sans-serif; font-size: 13pt;"> at the end of last month. Wendy had been for a visit to Portsmouth Hospital, talking to staff about her experiences of dementia. In her blog, Wendy said:</span></div>
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<i><span lang="EN-US" style="background-color: white; color: #1c1e21; font-family: "calibri" , sans-serif; font-size: 13pt;">“We’re often referred to as ‘Challenging patients’ but I refer to challenging staff. There’s a reason why we’re distressed and it’s up to you to find that reason. You need to enter our world as we simply can’t enter yours….”</span></i></blockquote>
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<span lang="EN-US" style="background-color: white; color: #1c1e21; font-family: "calibri" , sans-serif; font-size: 13pt;">There is no more I can add to that, except to say that I 100 percent agree with Wendy. It’s an uncomfortable truth to confront staff with, as I have done on many occasions, but an absolutely vital issue to deal with. Writing off someone with dementia by saying they have 'challenging behaviour' gives many staff the impression that they’ve ticked the ‘too difficult to deal with’ box and don’t need to do any more.<o:p></o:p></span></div>
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<span lang="EN-US" style="background-color: white; color: #1c1e21; font-family: "calibri" , sans-serif; font-size: 13pt;">Reframing thinking by saying it’s <a href="http://d4dementia.blogspot.com/2017/09/when-behaviour-changes.html" target="_blank">'changed behaviour'</a> (or <a href="http://d4dementia.blogspot.com/2018/05/action-for-dementia-care-and-support05.html" target="_blank">'Changes associated with dementia'</a> as I call one of my training modules) and challenging staff to find out what's changed is a crucial first step. And incidentally the answer is never, “Well the person’s dementia has got worse.” Reasons are as numerous as people are different, so there is never a one-size-fits-all answer. However, there are some universal themes which often reoccur, including a person with dementia feeling worthless, confused, frustrated and/or bored leading to what might be interpreted as being distressed, disruptive or destructive.<o:p></o:p></span></div>
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<span lang="EN-US" style="background-color: white; color: #1c1e21; font-family: "calibri" , sans-serif; font-size: 13pt;">I know I’d go crazy without occupations to keep my mind and body engaged and, ultimately, to feel that I’m living. Simply expecting people with dementia to sit quietly and slowly die is perverse. Engaging people in familiar occupations - or indeed new ones – that give them purpose, passion and excitement again is often a key first step. Believing in what people with dementia can do, and finding ways to work side-by-side with them to achieve everything from the mundane to the amazing is what living with dementia, rather than simply dying of dementia, is all about. <o:p></o:p></span></div>
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<span lang="EN-US" style="background-color: white; color: #1c1e21; font-family: "calibri" , sans-serif; font-size: 13pt;"><b>Rise to the challenge to change practice</b></span></div>
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<span lang="EN-US" style="background-color: white; color: #1c1e21; font-family: "calibri" , sans-serif; font-size: 13pt;">So, bravo to Wendy Mitchell and everyone else who’s pointed out that the challenge is for every one of us who isn't living with dementia, not for people with dementia. I for one love to rise to that challenge, find new ways to support a person that does away with the old model of dependence, disablement and drugging people to make them ‘compliant’, and that says: <o:p></o:p></span></div>
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<i><span lang="EN-US" style="background-color: white; color: #1c1e21; font-family: "calibri" , sans-serif; font-size: 13pt;">I will work with you to make the experience of living with dementia the best it can be for you, seeing you as a person and recognising what you can do rather than focusing on what you can’t.<o:p></o:p></span></i></div>
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<span style="font-family: "helvetica neue"; font-size: 11pt;">Until next time...</span></div>
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<span style="font-family: "calibri";"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgsOI0iIn3PacRD2fega0JbUk0-IzyWXIPF6blh3Z-oyEiztOjQJXcVg53N4U502C4LdpzAgxKBQMJBttzEjtaiO0qopfMUQGw2KilN_JSbqu0tPpm-fzQvA2cumDnoaA7R4M4Qy6QFgERd/s1600/01signature.jpg" imageanchor="1" style="clear: left; color: #b63846; float: left; margin-bottom: 1em; margin-right: 1em; text-decoration: none;"><img alt="Beth x" border="0" height="98" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgsOI0iIn3PacRD2fega0JbUk0-IzyWXIPF6blh3Z-oyEiztOjQJXcVg53N4U502C4LdpzAgxKBQMJBttzEjtaiO0qopfMUQGw2KilN_JSbqu0tPpm-fzQvA2cumDnoaA7R4M4Qy6QFgERd/s200/01signature.jpg" style="-webkit-box-shadow: rgba(0, 0, 0, 0.2) 0px 0px 0px; border-bottom-left-radius: 0px; border-bottom-right-radius: 0px; border-top-left-radius: 0px; border-top-right-radius: 0px; border: 1px solid transparent; box-shadow: rgba(0, 0, 0, 0.2) 0px 0px 0px; padding: 8px; position: relative;" title="Beth x" width="200" /></a></span></div>
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<span lang="EN-US"><span style="font-family: "open sans"; font-size: 13px;"><span style="font-family: "calibri";"></span></span><br style="font-family: "Open Sans"; font-size: 13px;" /><span style="font-family: "open sans"; font-size: 13px;"><span style="font-family: "calibri";"></span></span><br style="font-family: "Open Sans"; font-size: 13px;" /><br style="font-family: "Open Sans"; font-size: 13px;" /><span style="font-family: "helvetica neue";"><br /></span><span style="background-color: white; font-family: "open sans"; font-size: 13px;"></span><span style="font-family: "helvetica neue";">You can follow me on Twitter: <a href="https://twitter.com/bethyb1886" style="color: #b63846; text-decoration: none;" target="_blank">@bethyb1886</a></span><br style="font-family: "Open Sans"; font-size: 13px;" /><span style="font-family: "helvetica neue";"><a href="https://www.facebook.com/D4Dementia/" style="color: #b63846; text-decoration: none;" target="_blank">Like D4Dementia on Facebook</a></span></span></div>
Bethhttp://www.blogger.com/profile/09727279217918012517noreply@blogger.com0United Kingdom55.378051 -3.43597312.203021 -86.0531605 90 79.1812145tag:blogger.com,1999:blog-3778521335346901337.post-87218372969529586632020-01-20T09:00:00.000+00:002020-01-24T17:24:54.887+00:00Bothered and bewildered by the portrayal of dementia<div class="Default" style="border: none; font-family: "Helvetica Neue"; font-size: 11pt; margin: 0cm 0cm 0.0001pt;">
<span lang="EN-US" style="background-color: white; color: #1c1e21; font-family: "calibri" , sans-serif; font-size: 13pt;">The portrayal of dementia on TV and in the arts has undoubtedly risen since my dad was living with dementia. From major soaps to numerous stage plays, dementia - it seems - is popular subject matter.<o:p></o:p></span></div>
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<span lang="EN-US" style="background-color: white; color: #1c1e21; font-family: "calibri" , sans-serif; font-size: 13pt;">I’m not against portraying dementia when it’s done in a fair and equitable way that, crucially, educates. When I say educates, however, I don’t mean in the usual awareness-raising way, or by opting for the predictably negative portrayal that is perhaps most closely associated with dementia on TV or in the arts.<o:p></o:p></span></div>
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<span lang="EN-US" style="background-color: white; color: #1c1e21; font-family: "calibri" , sans-serif; font-size: 13pt;"><a href="https://rhapsodyinwords.com/2015/04/06/film-review-still-alice-guest-blog-by-beth-britton/" target="_blank">My biggest gripe against the Oscar-winning Still Alice</a> </span><span lang="EN-US" style="background-color: white; color: #1c1e21; font-family: "calibri" , sans-serif; font-size: 13pt;">was the total omission of any examples that showed how Alice and her family could have lived better with simple environmental modifications. For example, signage that would have assisted Alice to get to the toilet in time in her holiday home.<o:p></o:p></span></div>
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<span lang="EN-US" style="background-color: white; color: #1c1e21; font-family: "calibri" , sans-serif; font-size: 13pt;">My interest in the portrayal of dementia in the arts was ignited again last November when I went to see <a href="https://www.concordtheatricals.co.uk/p/57067/bothered-and-bewildered" target="_blank">'Bothered and Bewildered'</a>, one of the numerous stage plays focusing on dementia. The official synopsis of ‘Bothered and Bewildered’ says:</span></div>
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<span lang="EN-US" style="background-color: white; color: #1c1e21; font-family: "calibri" , sans-serif; font-size: 13pt;"><i>"This is a comedy drama about one woman’s struggle with Alzheimer’s. The play follows Irene and her two daughters Louise and Beth as the girls lose their mum in spirit but not in body."</i></span></blockquote>
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<span lang="EN-US" style="background-color: white; color: #1c1e21; font-family: "calibri" , sans-serif; font-size: 13pt;"><b>Comedy and dementia</b></span><br />
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<span lang="EN-US" style="background-color: white; color: #1c1e21; font-family: "calibri" , sans-serif; font-size: 13pt;">Those with a keen eye on language will find that synopsis somewhat troubling, and being in the audience was certainly an uncomfortable experience for me. I’ve often debated with myself how I feel about the use of comedy in relation to dementia, and this play laid bare those internal debates again.<o:p></o:p></span></div>
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<span lang="EN-US" style="background-color: white; color: #1c1e21; font-family: "calibri" , sans-serif; font-size: 13pt;">Whilst many others laughed, I couldn’t and didn’t throughout the whole play. That’s not to say that I don’t appreciate that humour has its place in dementia care - I sometimes laughed WITH my dad during his years with dementia, but never at him. <o:p></o:p></span></div>
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<span lang="EN-US" style="background-color: white; color: #1c1e21; font-family: "calibri" , sans-serif; font-size: 13pt;">Often people with dementia do things that to those observing them are strange - in these circumstances the first human response is often to laugh to conceal our own lack of intuition and understanding. But <a href="http://d4dementia.blogspot.com/2015/12/harnessing-power-of-observation.html" target="_blank">look beyond what you're seeing</a> to consider the reasons behind why a person is doing what they are doing and suddenly you think very differently. <o:p></o:p></span></div>
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<span lang="EN-US" style="background-color: white; color: #1c1e21; font-family: "calibri" , sans-serif; font-size: 13pt;">You feel sadness that the person’s damaged brain is leading them to outward expressions that barely conceal what is likely to be an internal turmoil of acute confusion. You might attempt to try and walk in that person’s shoes to imagine how they are feeling, knowing that you can switch off from that state of mind at any time, whereas the person is living with their dementia 24/7.<o:p></o:p></span><br />
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<span lang="EN-US" style="background-color: white; color: #1c1e21; font-family: "calibri" , sans-serif; font-size: 13pt;">The dubious comedy element in this play wasn’t my most overwhelming feeling, however. More than anything I wanted to jump on the stage and help Irene’s daughters to understand their mum better and cope better as a result.<o:p></o:p></span></div>
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<span lang="EN-US" style="background-color: white; color: #1c1e21; font-family: "calibri" , sans-serif; font-size: 13pt;">During the play Louise and Beth were immensely frustrated with their mother, didn’t know how to handle her paranoia and hallucinations, ended up looking for their mother with the police when she’d left the house in the darkness dressed only in her nightie, and felt driven towards seeking a care home place for her. <o:p></o:p></span></div>
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<span lang="EN-US" style="background-color: white; color: #1c1e21; font-family: "calibri" , sans-serif; font-size: 13pt;">The classic unpaid family carer scenario of trying to juggle work with caring responsibilities was also explored, with one of Irene’s daughters giving up work to try and care for her mother. The only professional support shown in the play came from a doctor, who for the purposes of the play asked far more questions than most doctors I’ve ever met. Despite this, however, he offered nothing by way of tangible practical support.<o:p></o:p></span><br />
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<span lang="EN-US" style="background-color: white; color: #1c1e21; font-family: "calibri" , sans-serif; font-size: 13pt;">I accept that the portrayal of Louise and Beth’s struggles are entirely reflective of the experiences of so many families. Indeed, there were elements that reminded me of my experiences with my dad, but my frustration is that we don’t move forward from this.<o:p></o:p></span></div>
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<span lang="EN-US" style="background-color: white; color: #1c1e21; font-family: "calibri" , sans-serif; font-size: 13pt;">In January 2020, every person with dementia and their family still <a href="http://d4dementia.blogspot.com/2017/08/the-failure-of-post-diagnostic-support.html" target="_blank">cannot access universal, comprehensive post-diagnosis support</a>, nor do they have access to their own <a href="https://www.dementiauk.org/get-support/admiral-nursing/" target="_blank">Admiral Nurse</a>, and most will find that care and support largely relies upon untrained and unsupported family carers until, more often than not, a crisis occurs and professional support is urgently needed.<o:p></o:p></span></div>
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<span lang="EN-US" style="background-color: white; color: #1c1e21; font-family: "calibri" , sans-serif; font-size: 13pt;">It’s a disgraceful reality facing numerous families, and the portrayal of this element of a family’s experience of dementia in ‘Bothered and Bewildered’ is perhaps all the more striking when you consider that this play wasn’t written recently - it was first performed in October 2014, proving that so little has changed.<o:p></o:p></span></div>
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<span lang="EN-US" style="background-color: white; color: #1c1e21; font-family: "calibri" , sans-serif; font-size: 13pt;">I’m sure that dementia will continued to be portrayed on TV and in the arts in the years ahead, hopefully not just by showing the difficulties, the frustrations and the sadness, but also by showing <a href="http://d4dementia.blogspot.com/2017/11/home-sweet-home.html" target="_blank">the environmental changes that can make a difference in someone’s home</a>, the meaningful professional support (Admiral Nurses etc) that can enable families to cope better, and (fingers crossed) even progressive initiatives like peer support groups (<a href="https://www.dementiavoices.org.uk/" target="_blank">DEEP</a> and <a href="https://www.dementiaallianceinternational.org/" target="_blank">DAI</a>) and <a href="https://dementiacarers.org.uk/" target="_blank">training for family carers</a>.<o:p></o:p></span></div>
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<span lang="EN-US" style="background-color: white; color: #1c1e21; font-family: "calibri" , sans-serif; font-size: 13pt;">If we could have all of that, with less focus on laughing at the person living with dementia, we’d be making progress. </span><span lang="EN-US" style="font-family: "calibri" , sans-serif; font-size: 13pt;"><o:p></o:p></span></div>
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<span style="font-family: "calibri";"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgsOI0iIn3PacRD2fega0JbUk0-IzyWXIPF6blh3Z-oyEiztOjQJXcVg53N4U502C4LdpzAgxKBQMJBttzEjtaiO0qopfMUQGw2KilN_JSbqu0tPpm-fzQvA2cumDnoaA7R4M4Qy6QFgERd/s1600/01signature.jpg" imageanchor="1" style="clear: left; color: #b63846; float: left; margin-bottom: 1em; margin-right: 1em; text-decoration: none;"><img alt="Beth x" border="0" height="98" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgsOI0iIn3PacRD2fega0JbUk0-IzyWXIPF6blh3Z-oyEiztOjQJXcVg53N4U502C4LdpzAgxKBQMJBttzEjtaiO0qopfMUQGw2KilN_JSbqu0tPpm-fzQvA2cumDnoaA7R4M4Qy6QFgERd/s200/01signature.jpg" style="-webkit-box-shadow: rgba(0, 0, 0, 0.2) 0px 0px 0px; border-bottom-left-radius: 0px; border-bottom-right-radius: 0px; border-top-left-radius: 0px; border-top-right-radius: 0px; border: 1px solid transparent; box-shadow: rgba(0, 0, 0, 0.2) 0px 0px 0px; padding: 8px; position: relative;" title="Beth x" width="200" /></a></span></div>
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<span lang="EN-US"><span style="font-family: "open sans"; font-size: 13px;"><span style="font-family: "calibri";"></span></span><br style="font-family: "Open Sans"; font-size: 13px;" /><span style="font-family: "open sans"; font-size: 13px;"><span style="font-family: "calibri";"></span></span><br style="font-family: "Open Sans"; font-size: 13px;" /><br style="font-family: "Open Sans"; font-size: 13px;" /><span style="font-family: "helvetica neue";"><br /></span><span style="background-color: white; font-family: "open sans"; font-size: 13px;"></span><span style="font-family: "helvetica neue";">You can follow me on Twitter: <a href="https://twitter.com/bethyb1886" style="color: #b63846; text-decoration: none;" target="_blank">@bethyb1886</a></span><br style="font-family: "Open Sans"; font-size: 13px;" /><span style="font-family: "helvetica neue";"><a href="https://www.facebook.com/D4Dementia/" style="color: #b63846; text-decoration: none;" target="_blank">Like D4Dementia on Facebook</a></span></span></div>
Bethhttp://www.blogger.com/profile/09727279217918012517noreply@blogger.com0United Kingdom55.378051 -3.4359729999999912.203021 -86.05316049999999 90 79.18121450000001tag:blogger.com,1999:blog-3778521335346901337.post-46693103151052077702019-12-16T09:00:00.000+00:002019-12-20T16:41:17.296+00:00Resolve to ask people with dementia what THEY want<div class="MsoNormal" style="font-family: "Times New Roman", serif; margin: 0cm 0cm 0.0001pt;">
<span style="font-family: "calibri" , sans-serif; font-size: 13pt;">With over 200 blogs on D4Dementia, some of them now 7 years old, I've decided to spend my 2019 year of blogging by re-visiting some of the topics I’ve covered previously, throwing fresh light on why they remain relevant, and updating them with some of my more recent experiences. For my last blog of 2019, I want to look at how we listen to and respect the viewpoints of people with dementia.</span><span style="font-family: "calibri" , sans-serif; font-size: 13pt;"><o:p></o:p></span></div>
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<span style="font-family: "calibri" , sans-serif; font-size: 13pt;">In July 2015, I wrote a blog post entitled: <a href="http://d4dementia.blogspot.com/2015/07/why-dont-we-listen-to-people-with.html" target="_blank">'Why don't we listen to people with dementia?'</a>. </span><span style="font-family: "calibri" , sans-serif; font-size: 13pt;">In that blog I said:</span></div>
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<i><span style="font-family: "calibri" , sans-serif; font-size: 13pt;">“If we are ever to move beyond stigma and discrimination and towards a truly world-class model of support and care for people with dementia, then giving people with dementia a voice and listening to what they have to say really is the only place to start.”</span></i></blockquote>
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<span style="font-family: "calibri" , sans-serif; font-size: 13pt;">It was, therefore, with some amazement that I read a report about the UK Dementia Congress debate last month entitled, ‘Environmental lies in care homes play an important role in delivering person centred care’. <a href="https://www.facebook.com/JournalOfDementiaCare/posts/2760228804066220" target="_blank">The Journal of Dementia Care</a></span><span style="font-family: "calibri" , sans-serif; font-size: 13pt;"> said the following about the debate:</span></div>
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<i><span style="font-family: "calibri" , sans-serif; font-size: 13pt;">“When can you lie to a care home resident? It was a hotly contested issue at UKDC last week, where delegates debated the use of “environmental lies” in care settings, such as fake windows with painted views, “bus stops” to which no bus ever comes, and disguised doors. “<b>As a person with dementia when I go into a care home I do not want them to lie, either in the environment they create or in their actions,” said Keith Oliver</b>, who opposed the motion that deceptive décor can play an important role in delivering person-centred care. It was an impassioned performance from Oliver, who has young onset dementia, which helped sway the audience from favouring environmental lies at the start of the debate to being firmly against by the end. But independent nurse consultant Lynne Phair, fought valiantly in favour of the motion and said there could be a therapeutic value in meeting the person with dementia in their own reality. Phair added: “Environmental lies must be used wisely.” But there was a resounding victory for the motion's opposers – also including Professor Graham Stokes – who had 54% of the audience behind them by the end (compared with 33% at start), while the proposers – also including family member Catherine Naj Dyke - had 37% on their side by the end (40% at the beginning).”</span></i></blockquote>
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<span style="font-family: "calibri" , sans-serif; font-size: 13pt;">For me, the quote from Keith Oliver says it all, and frankly not only would I have supported Keith had I been at the debate but I wouldn’t have had the temerity to argue against him (which would make me a useless debater!) even if I felt fake environments were a good idea (which I don’t) for one simple reason - He is living with dementia, I am not. My natural standpoint is to show deference to any person living with dementia, putting aside my personal viewpoints and remembering what my dad always told me: “Respect your elders and betters.”<o:p></o:p></span></div>
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<span style="font-family: "calibri" , sans-serif; font-size: 13pt;">Keith’s views, I suspect, are echoed by many people living with dementia, including the numerous individuals who are living with dementia in care homes and largely don’t have a voice. From my experiences with my dad, I know he found the fake letterbox, door knocker and doorknob put onto his care home bedroom door utterly baffling, and why wouldn’t you? They didn’t function as these items normally would, and they seemed to have been added purely for decoration following a dementia consultant being engaged to ‘improve’ the environment. Sadly, what this consultant didn’t factor in was the amount of confusion and frustration such changes would cause.<o:p></o:p></span></div>
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<span style="font-family: "calibri" , sans-serif; font-size: 13pt;">In my work with care homes, I have never advocated for the implementation of fake environments. I have always felt, and seen this borne out numerous times, that if the care and support is good enough, if staff really understand dementia and are well trained and supported in their work, then the needs of residents living with dementia will not only be met but continually exceeded.<o:p></o:p></span></div>
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<span style="font-family: "calibri" , sans-serif; font-size: 13pt;">The money spent on fake environments, which is often considerable, is always likely to be better spent investing in staff. It is people that make the difference in dementia care, nothing is more important than the human element, and to reinforce this I go back to the point I made at the National Care Forum (NCF) Managers Conference last month, and which was <a href="https://www.nationalcareforum.org.uk/blog/innovation-and-relationships/" target="_blank">reported on by the NCF's Nathan Jones</a>: </span></div>
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<span style="font-family: "calibri" , sans-serif; font-size: 13pt;"><i>“A hotel environment is just window dressing if the care is not there.”</i></span></blockquote>
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<span style="font-family: "calibri" , sans-serif;"><span style="font-size: 13pt;">The type of environmental changes I support are based on bringing the person’s life story alive. I love to see environmental life story work that enables people to be reminded of things in their lives that make them happy or proud. After all, most of us like being surrounded by family photos, mementoes from holidays, and career, hobby, sporting or musical passions or achievements. Most people fill their homes with items that are personal to them, and that is the most apt way to create a supportive environment for a person living with dementia. Even if it’s only within their own bedroom in a care home it is better than the stark, plain, hospital-like rooms that so many people with dementia exist in within care homes, and certainly better than deliberately </span><span style="font-size: 17.33333396911621px;">introducing</span><span style="font-size: 13pt;"> items or decorations that depict something utterly fake. <o:p></o:p></span></span></div>
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<span style="font-family: "calibri" , sans-serif; font-size: 13pt;">As I said in my September 2016 blog, <a href="http://d4dementia.blogspot.com/2016/09/life-story-work-gift-that-keeps-on.html" target="_blank">'Life story work - The gift that keeps on giving'</a>:</span></div>
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<i><span style="font-family: "calibri" , sans-serif; font-size: 13pt;">“Documenting memories and turning them into vibrant resources that tell their own unique story has a magical quality about it that I can’t put into words – you really just have to try it.”</span></i></blockquote>
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<span style="font-family: "calibri" , sans-serif; font-size: 13pt;">So, if you run a care home and are planning some environmental changes in 2020 (or beyond), resolve to: Find out what people living with dementia actually want (ask them! And if the people you support aren't able to help, contact organisations like <a href="https://www.dementiavoices.org.uk/" target="_blank">DEEP</a> or <a href="https://www.dementiaallianceinternational.org/" target="_blank">Dementia Alliance International</a>), prioritise life story work for anyone you support who wants to participate in that, and always keep it real, not fake.<o:p></o:p></span></div>
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<span style="font-family: "calibri" , sans-serif; font-size: 13pt;">Thank you for all your support in 2019. Until 2020...</span></div>
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<span style="font-family: "calibri";"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgsOI0iIn3PacRD2fega0JbUk0-IzyWXIPF6blh3Z-oyEiztOjQJXcVg53N4U502C4LdpzAgxKBQMJBttzEjtaiO0qopfMUQGw2KilN_JSbqu0tPpm-fzQvA2cumDnoaA7R4M4Qy6QFgERd/s1600/01signature.jpg" imageanchor="1" style="clear: left; color: #b63846; float: left; margin-bottom: 1em; margin-right: 1em; text-decoration: none;"><img alt="Beth x" border="0" height="98" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgsOI0iIn3PacRD2fega0JbUk0-IzyWXIPF6blh3Z-oyEiztOjQJXcVg53N4U502C4LdpzAgxKBQMJBttzEjtaiO0qopfMUQGw2KilN_JSbqu0tPpm-fzQvA2cumDnoaA7R4M4Qy6QFgERd/s200/01signature.jpg" style="-webkit-box-shadow: rgba(0, 0, 0, 0.2) 0px 0px 0px; border-bottom-left-radius: 0px; border-bottom-right-radius: 0px; border-top-left-radius: 0px; border-top-right-radius: 0px; border: 1px solid transparent; box-shadow: rgba(0, 0, 0, 0.2) 0px 0px 0px; padding: 8px; position: relative;" title="Beth x" width="200" /></a></span></div>
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<span lang="EN-US"><span style="font-family: "open sans"; font-size: 13px;"><span style="font-family: "calibri";"></span></span><br style="font-family: "Open Sans"; font-size: 13px;" /><span style="font-family: "open sans"; font-size: 13px;"><span style="font-family: "calibri";"></span></span><br style="font-family: "Open Sans"; font-size: 13px;" /><br style="font-family: "Open Sans"; font-size: 13px;" />You can follow me on Twitter: <a href="https://twitter.com/bethyb1886" style="color: #b63846; text-decoration: none;" target="_blank">@bethyb1886</a><br style="font-family: "Open Sans"; font-size: 13px;" /><a href="https://www.facebook.com/D4Dementia/" style="color: #b63846; text-decoration: none;" target="_blank">Like D4Dementia on Facebook</a></span></div>
Bethhttp://www.blogger.com/profile/09727279217918012517noreply@blogger.com0United Kingdom55.378051 -3.4359729999999912.203021 -86.05316049999999 90 79.18121450000001tag:blogger.com,1999:blog-3778521335346901337.post-72117460668724003022019-11-18T09:00:00.000+00:002019-11-18T13:52:27.486+00:00Together we can do SO much<div class="MsoNormal" style="border: none; font-family: "Times New Roman", serif; margin: 0cm 0cm 0.0001pt;">
<span style="font-family: Calibri, sans-serif; font-size: 13pt;">With over 200 blogs on D4Dementia, some of them now 7 years old, I've decided to spend my 2019 year of blogging by re-visiting some of the topics I’ve covered previously, throwing fresh light on why they remain relevant, and updating them with some of my more recent experiences. This month, I want to look at improving care and support.</span></div>
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<span lang="EN-US" style="font-family: Calibri, sans-serif; font-size: 13pt;">In October 2014, I wrote a blog entitled <a href="http://d4dementia.blogspot.com/2014/10/inspiring-end-of-life-care.html" target="_blank">'Inspiring end-of-life care'</a></span><span lang="EN-US" style="font-family: Calibri, sans-serif; font-size: 13pt;">. In that blog I talked about my experience of speaking at the Alzheimer Europe Conference about my dad’s end of life care:<o:p></o:p></span></div>
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<i><span lang="EN-US" style="font-family: Calibri, sans-serif; font-size: 13pt;">“I hope that the standing ovation my presentation received is proof that my dad’s story can inspire better end-of-life care for other people in the future, and that speaking about even the most difficult topics can be warmly received if you connect with people on a human level. And that is perhaps the most important message of all: we have great caring qualities as human beings that have the ability to change lives at every stage of life, even at the end.”<o:p></o:p></span></i></div>
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<tr><td class="tr-caption" style="text-align: center;">Photo credit: National Care Forum Managers Conference 2019</td></tr>
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<span lang="EN-US" style="font-family: Calibri, sans-serif; font-size: 13pt;">It is that ability to change lives that was at the forefront of my most recent speech, delivered to the <a href="https://www.nationalcareforum.org.uk/ncf-managers-conference/" target="_blank">National Care Forum (NCF) Managers Conference</a> earlier this month. Entitled ‘Being a Change Maker for Family Carers’, my speech charted the nine years that my dad spent in care homes. I then went on to talk about the lessons that could be learnt from my dad’s experiences (and ours as a family), and the actions care providers can take to facilitate the person and relationships centred outcomes that are at the heart of care and support.<o:p></o:p></span></div>
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<span lang="EN-US" style="font-family: Calibri, sans-serif; font-size: 13pt;">I want to share some of what I spoke about in this blog, just as I did in my ‘Inspiring end-of-life care’ post, for anyone who wasn’t at the NCF conference and indeed to remind those who were there what I talked about:<o:p></o:p></span></div>
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<span lang="EN-US" style="font-family: Calibri, sans-serif; font-size: 13pt;"><b>Lesson 1) Choice is important</b><o:p></o:p></span></div>
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<i><span lang="EN-US" style="font-family: Calibri, sans-serif; font-size: 13pt;">“In the aftermath of dad’s diagnosis, when he was still in hospital, we were given no option to explore homecare or live-in care. I’m not saying we would have definitely chosen those options, but I advocate now for choice in care provision because I believe it is a fundamental right. Families should know about all of the options and ways found to facilitate their preferred option rather than being told, as we were, that there is only one option.”</span></i></div>
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<span lang="EN-US" style="font-family: Calibri, sans-serif; font-size: 13pt;"><b>Lesson 2) Understand and empathise</b><o:p></o:p></span></div>
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<i><span lang="EN-US" style="font-family: Calibri, sans-serif; font-size: 13pt;">“</span><span lang="EN-US" style="font-family: Calibri, sans-serif; font-size: 13pt;">We had no idea what to look for in a care home and what the ‘right’ questions were to ask - we didn’t want to choose the wrong service through ignorance. Simply knowing you want the best care for your loved one isn’t enough knowledge to make an informed choice.”</span></i></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg9oct8Tyn2TyHVcY9rLDbVA9lIXM4bb2yvY5jsnE6w8u9o0xeiUPlkwL50pF_G-nHmBClNa1SV178krknmZr0eOzMVK6FnYnl69uo4iO09ZLPAUbdCGIMnGCsHevQmA660B6S1Ng3uBGcs/s1600/Actions2.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1200" data-original-width="1600" height="298" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg9oct8Tyn2TyHVcY9rLDbVA9lIXM4bb2yvY5jsnE6w8u9o0xeiUPlkwL50pF_G-nHmBClNa1SV178krknmZr0eOzMVK6FnYnl69uo4iO09ZLPAUbdCGIMnGCsHevQmA660B6S1Ng3uBGcs/s400/Actions2.png" width="400" /></a></div>
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<span lang="EN-US" style="font-family: Calibri, sans-serif; font-size: 13pt;"><b>Lesson 3) Build Trust</b><o:p></o:p></span></div>
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<i><span lang="EN-US" style="font-family: Calibri, sans-serif; font-size: 13pt;">“The problem with trust in social care is it’s very fragile. We trusted the staff, but many of those staff were bullied into leaving when the successor to Southern Cross took over the home. Over the years, we’d trusted owners who promised to invest, but none really did what they promised. The last owner destroyed all trust by investing in the environment rather than the people. And of course it’s people, it’s the quality of that human factor that is so important. A hotel environment is just window-dressing if the care and support just isn’t there.”</span></i></div>
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<span lang="EN-US" style="font-family: Calibri, sans-serif; font-size: 13pt;"><b>Lesson 4) Recognise needs</b><o:p></o:p></span></div>
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<i><span lang="EN-US" style="font-family: Calibri, sans-serif; font-size: 13pt;">“We talk a lot in social care about needs. But what about the needs of family carers and families? Perhaps most notably is the need to feel <a href="http://d4dementia.blogspot.com/2019/10/being-good-listener.html" target="_blank">listened to</a> and understood…For many family carers in particular, their needs will also include the need to be partners in care. <o:p></o:p></span></i></div>
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<i><span lang="EN-US" style="font-family: Calibri, sans-serif; font-size: 13pt;">I think it’s important here to also consider what care providers need….I would suggest that most care providers would say they want their staff to be treated with respect, to be told at the earliest opportunity if there are problems and be given the chance to rectify those issues, and for communication to be open and honest.”</span></i></div>
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<span lang="EN-US" style="font-family: Calibri, sans-serif; font-size: 13pt;">I finished my speech with this quote from Helen Keller:</span></div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg06MivxUQCsdPYUqS9dSrp8XXXZqTBTgZ8AwP92yIRr9pkf3onSd4vEDHfIP9jfBwZEY8hwcusimbSDcnTrNAUQnP0rX4P_PtGdHa1HtBQ_QKr2ceqGxmFgDlkX2NJdvA2bscTSAubTkA1/s1600/teamwork06.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="674" data-original-width="700" height="308" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg06MivxUQCsdPYUqS9dSrp8XXXZqTBTgZ8AwP92yIRr9pkf3onSd4vEDHfIP9jfBwZEY8hwcusimbSDcnTrNAUQnP0rX4P_PtGdHa1HtBQ_QKr2ceqGxmFgDlkX2NJdvA2bscTSAubTkA1/s320/teamwork06.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><i style="font-family: "Times New Roman", serif; text-align: start;"><span lang="EN-US" style="font-family: Calibri, sans-serif; font-size: 13pt;">“Alone we can do so little; together we can do so much.”</span></i><span style="font-family: Calibri, sans-serif; font-size: 13pt;"> </span></td></tr>
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<span lang="EN-US" style="font-family: Calibri, sans-serif; font-size: 13pt;">My speech didn’t end with a standing ovation, but if anything it was better than that, because so many people came up to me afterwards to thank me, talk about what I’d said and tell me how they would be aiming to implement some of my actions. In the days since the conference, I’ve had so many social media and email messages expressing similar sentiments. A compilation of some of the feedback I’ve received is <a href="https://bethbritton.com/2019/11/08/ncf-managers-conference-2019/" target="_blank">on my website</a></span><span lang="EN-US" style="font-family: Calibri, sans-serif; font-size: 13pt;"> and <a href="https://www.nationalcareforum.org.uk/blog/innovation-and-relationships/" target="_blank">this blog from the NCF's Policy, Research and Projects Officer, Nathan Jones</a>, also includes a review of my session.</span></div>
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<span lang="EN-US" style="font-family: Calibri, sans-serif; font-size: 13pt;">In the 7+ years since my dad died and I’ve done the work I do now I’ve never felt I inspired an audience so much, potentially becoming the catalyst for positive change within numerous social care services. It’s led me to the conclusion that whoever we are, we all have the power to be change makers. <o:p></o:p></span></div>
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<span lang="EN-US" style="font-family: Calibri, sans-serif; font-size: 13pt;">In social care services, it isn’t just managers and care staff, but ALL staff who can be change makers. In wider society, from bus drivers to bin men, nurses to beauticians, researchers to supermarket checkout staff, we can all be the change we want to see. <o:p></o:p></span></div>
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<span lang="EN-US" style="font-family: Calibri, sans-serif; font-size: 13pt;">For me that change is a society that comprehensively supports everyone who needs social care (electioneering politicians take note!) and that, specifically in relation to people with dementia, ensures that rather than providing care that I can pick apart, find lessons to learn from and actions to implement is simply a celebration: of doing anything and everything that makes a person’s years with dementia the very best they can be.<o:p></o:p></span></div>
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<span style="font-family: "helvetica neue"; font-size: 11pt;">Until next time...</span></div>
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Bethhttp://www.blogger.com/profile/09727279217918012517noreply@blogger.com0United Kingdom55.378051 -3.4359729999999912.203021 -86.05316049999999 90 79.18121450000001tag:blogger.com,1999:blog-3778521335346901337.post-3631702029136808602019-10-21T09:00:00.000+01:002019-10-21T19:02:55.267+01:00Being a good listener<div class="MsoNormal" style="-webkit-text-size-adjust: auto; -webkit-text-stroke-width: 0px; border: none; caret-color: rgb(0, 0, 0); color: black; font-family: "Times New Roman", serif; font-size: medium; font-style: normal; font-variant-caps: normal; font-weight: normal; letter-spacing: normal; margin: 0cm 0cm 0.0001pt; orphans: auto; text-align: start; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; widows: auto; word-spacing: 0px;">
<span style="font-family: "calibri" , sans-serif; font-size: 12.5pt;">With over 200 blogs on D4Dementia, some of them now 7 years old, I've decided to spend my 2019 year of blogging by re-visiting some of the topics I’ve covered previously, throwing fresh light on why they remain relevant and updating them with some of my more recent experiences. This month, I want to look at the communication skill of listening.</span></div>
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<span lang="EN-US" style="font-family: "calibri" , sans-serif; font-size: 12.5pt;">I’ve written about communication a lot on D4Dementia, most recently in my January 2019 post, <a href="http://d4dementia.blogspot.com/2019/01/communication-its-more-than-just-words.html" target="_blank">'Communication - It's more than just words'</a>. In that blog I highlighted non-verbal communication skills and observation as two important facets of effective communication.<o:p></o:p></span></div>
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<span lang="EN-US" style="font-family: "calibri" , sans-serif; font-size: 12.5pt;">In this blog I want to build on those themes and look at listening as a vital communication skill. Listening as a skill runs throughout all of my training but particularly in my <a href="http://d4dementia.blogspot.com/2018/05/action-for-dementia-care-and-support03.html" target="_blank">communication module</a> which includes a learning point of ‘Talking and listening’.<o:p></o:p></span></div>
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<b><span lang="EN-US" style="font-family: "calibri" , sans-serif; font-size: 12.5pt;">Do you REALLY listen?<o:p></o:p></span></b></div>
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<span lang="EN-US" style="font-family: "calibri" , sans-serif; font-size: 12.5pt;">It’s always interesting to challenge learners by asking them how good they believe they are at listening. In my experience, most of us believe we are good listeners, when in actual fact we aren’t but fail to recognise this deficit in ourselves. This is partly because although listening is taken for granted, there is a stigma attached to not being a good listener, with poor listeners often considered to be disrespectful. Therefore most of us want to believe we are good listeners even if we aren’t.<o:p></o:p></span></div>
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<span lang="EN-US" style="font-family: "calibri" , sans-serif; font-size: 12.5pt;">But what is a ‘good listener’ exactly? To listen properly, you need to shut out all other thoughts and distractions and really concentrate on the person. That is easier said than done, however. Multitasking is considered a prized skill, but while there are many things you can do simultaneously, good quality listening requires more concentration than a multitasking person can provide. <o:p></o:p></span></div>
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<span lang="EN-US" style="font-family: "calibri" , sans-serif; font-size: 12.5pt;">Once you’ve concentrated on the person, your listening is then about more than just being a listening ‘ear’. Whilst our ears take in the sound (or perhaps struggle with this if we have a hearing problem, as I wrote about in <a href="http://d4dementia.blogspot.com/2016/10/missing-morning-chorus-life-with.html" target="_blank">'Missing the morning chorus - Life with hearing loss'</a>), the interpretation happens in our brains - a busy head with numerous thoughts isn’t going to be a listening head. Our body language can also help or hinder our listening. If we are fidgeting, fiddling with our hands or glancing around we aren’t really concentrating on the person we should be listening to.<o:p></o:p></span></div>
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<b><span lang="EN-US" style="font-family: "calibri" , sans-serif; font-size: 12.5pt;">Listening in dementia care<o:p></o:p></span></b></div>
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<span lang="EN-US" style="font-family: "calibri" , sans-serif; font-size: 12.5pt;">When a person is struggling to communicate, you need to listen very carefully to pick up on any clues that can help you to understand what the person wants you to know. Communication can include sounds and noises that aren’t words and may not immediately resonate with you. This can result in the listener losing focus or interest pretty quickly, mostly because we are conditioned to wanting to understand things rapidly and easily.<o:p></o:p></span></div>
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<span lang="EN-US" style="font-family: "calibri" , sans-serif; font-size: 12.5pt;">Hence why, in dementia care in particular, high quality listening is so important. Appreciating that you’ve not immediately understood what you’re hearing but persevering regardless is vital to pick up clues that can help you to unravel what you are hearing. With time and patience you will often discover far more than you might originally have expected to.<o:p></o:p></span></div>
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<span lang="EN-US" style="font-family: "calibri" , sans-serif; font-size: 12.5pt;">So, that’s listening in a nutshell, but what about people who fall between being a ‘good listener’ and a ‘poor listener’? 'Partial listeners' are everywhere - those of us who concentrate to begin with before starting to formulate our answer and response, but in the process fail to listen to the rest of what is being communicated to us.<o:p></o:p></span></div>
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<tr><td class="tr-caption" style="text-align: center;">I saw this on social media recently, and for me it really sums up one of the biggest problems around listening.</td></tr>
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<b><span lang="EN-US" style="font-family: "calibri" , sans-serif; font-size: 12.5pt;">Listening and responding as a care provider<o:p></o:p></span></b></div>
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<span lang="EN-US" style="font-family: "calibri" , sans-serif; font-size: 12.5pt;">The danger with being a poor or partial listener is that our response may end up being entirely inappropriate. Responsiveness is considered to be so important that it is one of the CQC Key Lines of Enquiry, so any care provider who isn’t creating a culture where they are really listening to the people they support and their staff isn’t likely to be one who is responding well either. As I said in my 2016 blog, <a href="http://d4dementia.blogspot.com/2016/11/is-your-workforce-person-centred.html" target="_blank">'Is your workforce person-centred?'</a></span></div>
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<span lang="EN-US" style="font-family: "calibri" , sans-serif; font-size: 12.5pt;"><i>“My challenge to every social care provider reading this blog is embed observation and responsiveness into your leadership. If you think you already have, do it again, evaluate and keep evolving the leader you are, and the expectations you have of everyone in your team.”</i></span></blockquote>
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<span lang="EN-US" style="font-family: "calibri" , sans-serif; font-size: 12.5pt;">Genuine listening isn’t something that many organisational structures support well, but I’ve seen a couple of examples that I’d like to share with you:<o:p></o:p></span></div>
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<!--[if !supportLists]--><span lang="EN-US" style="font-family: "symbol"; font-size: 12.5pt;"><span style="mso-list: Ignore;">·<span style="font: 7.0pt "Times New Roman";"> </span></span></span><span lang="EN-US" style="font-family: "calibri" , sans-serif; font-size: 12.5pt;">My first example comes from a care home, who wanted to ensure that they were really listening to their residents. They’d had suggestion boxes, feedback forms, resident meetings and a managerial ‘open door’ policy for many years, but they were concerned that these were piecemeal listening exercises. The suggestion box was rarely used, feedback forms often contained the same information (and weren’t always completed), the gaps in-between meetings didn’t reflect the need to listen on a daily basis, and only a few residents would regularly seek out the manager.<o:p></o:p></span></div>
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<span lang="EN-US" style="font-family: "calibri" , sans-serif; font-size: 12.5pt;">So, they implemented a new element into their working week where senior staff would, between them, visit 4 residents per day for protected time when they would just listen. As a result they discovered all kinds of information, including ideas for service improvements, dissatisfactions, information about people’s life stories, things they wanted to do, and even plans for their end of life. It was priceless information that they’d never discovered from any other ‘listening’ exercise.<o:p></o:p></span></div>
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<!--[if !supportLists]--><span lang="EN-US" style="font-family: "symbol"; font-size: 12.5pt;"><span style="mso-list: Ignore;">·<span style="font: 7.0pt "Times New Roman";"> </span></span></span><span lang="EN-US" style="font-family: "calibri" , sans-serif; font-size: 12.5pt;">My second example comes from a homecare agency, who were concerned that they weren’t listening to their staff enough simply because of the nature of their care workers’ remote working. When they had team meetings these were often jam packed with agenda items - staff attending were talked to a lot by managers, and it was assumed that they were listening, but there was sometimes precious little chance for each individual to have their say and be listened to.<o:p></o:p></span></div>
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<span lang="EN-US" style="font-family: "calibri" , sans-serif; font-size: 12.5pt;">So, they decided to implement a meet and listen with an external facilitator. Once a month they would have a meeting and managers wouldn’t say anything initially. Staff members would take it in turns to speak, and no one else could speak when that person was speaking. Managers would then be quizzed, randomly, at the end of the meeting by the facilitator, to ensure that they had been listening and to say how they would respond to what they’d heard.<o:p></o:p></span></div>
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<span lang="EN-US" style="font-family: "calibri" , sans-serif; font-size: 12.5pt;">For both of these services, the benefits of really listening became apparent very quickly. They also helped to bring home to frontline staff how vital a skill listening is, which of course had fantastic benefits for the people they were supporting too.</span></div>
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<span style="font-family: "helvetica neue"; font-size: 11pt;">Until next time...</span></div>
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<span lang="EN-US"><span style="font-family: "open sans"; font-size: 13px;"><span style="font-family: "calibri";"></span></span><br style="font-family: "Open Sans"; font-size: 13px;" /><span style="font-family: "open sans"; font-size: 13px;"><span style="font-family: "calibri";"></span></span><br style="font-family: "Open Sans"; font-size: 13px;" /><br style="font-family: "Open Sans"; font-size: 13px;" /><span style="font-family: "helvetica neue";"><br /></span><span style="background-color: white; font-family: "open sans"; font-size: 13px;"></span><span style="font-family: "helvetica neue";">You can follow me on Twitter: <a href="https://twitter.com/bethyb1886" style="color: #b63846; text-decoration: none;" target="_blank">@bethyb1886</a></span><br style="font-family: "Open Sans"; font-size: 13px;" /><span style="font-family: "helvetica neue";"><a href="https://www.facebook.com/D4Dementia/" style="color: #b63846; text-decoration: none;" target="_blank">Like D4Dementia on Facebook</a></span></span></div>
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</style>Bethhttp://www.blogger.com/profile/09727279217918012517noreply@blogger.com0United Kingdom55.378051 -3.4359729999999912.203021 -86.05316049999999 90 79.18121450000001tag:blogger.com,1999:blog-3778521335346901337.post-90472115685908198622019-09-21T09:00:00.000+01:002019-09-21T13:46:51.808+01:00Myths and lessons<div class="MsoNormal" style="font-family: Calibri, sans-serif; margin: 0cm 0cm 0.0001pt;">
<span style="font-size: 12.5pt;">With over 200 blogs on D4Dementia, some of them now 7 years old, I've decided to spend my 2019 year of blogging by re-visiting some of the topics I’ve covered previously, throwing fresh light on why they remain relevant, and updating them with some of my more recent experiences. This month, I want to look at awareness.</span></div>
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<span lang="EN-US" style="font-size: 12.5pt;">My first D4Dementia <a href="https://www.worldalzmonth.org/" target="_blank">World Alzheimer’s Month</a> blog in September 2012 was entitled, <a href="http://d4dementia.blogspot.com/2012/09/so-how-much-do-you-know-about-dementia.html" target="_blank">‘So how much do you know about dementia?’</a> In the blog, which remains one of my most popular to date, I sought to bust myths about dementia and talk about what dementia had taught me. The myth-busting is particularly interesting to look back on as the blog was written before <a href="https://www.dementiafriends.org.uk/" target="_blank">Dementia Friends</a> - one of the key initiatives to raise awareness of dementia - was launched. Some of the messages from that blog went on to be incorporated into Dementia Friends and have become mainstream knowledge, but they are still worth repeating:</span></div>
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<li><span style="font-size: 12.5pt;"><i>Dementia is not a normal part of ageing (types of dementia are caused by diseases of the brain). </i></span></li>
<li><span style="font-size: 12.5pt;"><i>There is so much more to dementia than just forgetting things (<a href="http://d4dementia.blogspot.com/2013/05/what-is-dementia.html" target="_blank">dementia symptoms</a> are multi-faceted, vary hugely and are individual to each person).</i></span></li>
<li><span style="font-size: 12.5pt;"><i>Dementia doesn't just happen when people get older (young onset dementia, defined as dementia in someone under 65, is increasing and dementia can even occur in children, although this is rare).</i></span></li>
<li><span style="font-size: 12.5pt;"><i>People with dementia are still people, not a disease. </i></span></li>
<li><span style="font-size: 12.5pt;"><i>Dementia is not contagious. </i></span></li>
<li><span style="font-size: 12.5pt;"><i>Those living with dementia still want to lead active and full lives and not be locked away and forgotten about (most people want to be cared for at home, not in communal establishments).</i></span></li>
<li><span style="font-size: 12.5pt;"><i>People with dementia can make a positive contribution to society if supported to do so.</i></span></li>
<li><span style="font-size: 12.5pt;"><i>You can live well, or live as well as possible, with dementia.</i></span></li>
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<span lang="EN-US" style="font-size: 12.5pt;">I followed the myth-busting with some personal reflections about what my dad’s dementia had taught me:</span></div>
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<li><span style="font-size: 12.5pt;"><i>To appreciate the smallest things in life, since they become extremely precious (a simple “Hello” from my dad in his final few months brought a massive smile to my face). </i></span></li>
<li><span style="font-size: 12.5pt;"><i>To make the most of every day (good days and bad days become an ever-present feature with dementia, and when the good ones come along you want to make the most of them). </i></span></li>
<li><span style="font-size: 12.5pt;"><i>To never give up (yes there isn’t a cure yet, but there is a lot you can do to make someone’s life with dementia a more positive experience than it would have been ten, twenty or thirty years ago). </i></span></li>
<li><span style="font-size: 12.5pt;"><i>Finally, in my case, to share our experiences with the world (everything my dad went through is there to inform, educate and influence others. He would have wanted to make a real and lasting difference, and hopefully through me that will be his legacy).</i></span></li>
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<span lang="EN-US" style="font-size: 12.5pt;">Despite there being seven years between writing that 2012 blog and today, and a multitude of other experiences gained primarily through my work but also from people I’ve known personally, I cannot better those last four points - they sum up so much of what I talk about regularly. <o:p></o:p></span></div>
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<span lang="EN-US" style="font-size: 12.5pt;">Appreciating the smallest things in life feeds into the principle of taking notice, one of the <a href="https://neweconomics.org/2011/07/five-ways-well-new-applications-new-ways-thinking" target="_blank">Five Ways to Wellbeing</a> that have been pioneered by the New Economics Foundation and are widely recognised as key aspects of supporting good mental health. In 2012 I gave the example of my dad saying a simple “Hello” to me in the last months of his life, but I’ve since heard about even more precious, seemingly ‘small’ moments, not least a lady whose husband (who was living with dementia) told her he loved her - quite unexpectedly as he wasn’t given for such proclamations she said - just hours before a major stroke left him unable to speak another word for the rest of his life.<o:p></o:p></span></div>
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<span lang="EN-US" style="font-size: 12.5pt;">Making the most of every day was, in my dad’s case, particularly notable when we were supporting him in things that reflected the happiest memories from his life. Examples of that included listening (and singing) to music he loved, looking at books he’d enjoyed in his life (including reading a poetry book about love in the last days of his life), enjoying favourite foods (roast beef), or talking about some of his favourite memories of his life and looking at items that reflected those, which in my dad’s case were his notable achievements as a farmer. We, of course, knew my dad’s life story and so were able to facilitate all of this interaction, but for professionals currently supporting a person that they don’t know as well I would wholeheartedly recommend <a href="http://d4dementia.blogspot.com/2016/09/life-story-work-gift-that-keeps-on.html" target="_blank">life story work</a> – it really is the gift that keeps on giving.<o:p></o:p></span></div>
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<span lang="EN-US" style="font-size: 12.5pt;">Never giving up for me means being really <a href="http://d4dementia.blogspot.com/2018/05/action-for-dementia-care-and-support02.html" target="_blank">person and relationship centred</a> in your approach to supporting the person. If you spend a lot of time focusing on the big picture of dementia (the minimal treatments and lack of a cure) and the stark reality of dementia as a progressive and terminal disease, you can very quickly feel like giving up. Whereas if you get back to thinking about the person, what might make their life happier or more comfortable right now, you can find a sense of positivity and achievement. A classic example of this comes from a gentleman I met who every Friday would bring 3 roses to his wife in her care home. I was curious as to the significance of the day and the number of roses so I asked him. He said the roses (which always had to be different colours) represented their 3 children, all of whom had been born on a Friday. He said his wife couldn’t remember their names now, so the roses (roses were his wife’s favourite flower) had become her way of feeling close to her children (two of whom now lived abroad). She would hold, caress and study each of the roses and they’d have conversations about ‘red’ rose, ‘pink’ rose and ‘yellow’ rose, with him weaving in details about their children’s lives to make the conversation more meaningful.<o:p></o:p></span></div>
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<span lang="EN-US" style="font-size: 12.5pt;">Sharing experiences remains one of my greatest passions. Telling my dad’s story and the stories of the many other people I’ve met who are ageing and/or living with dementia is the most powerful way I’ve found in 7+ years to illustrate the health and care experiences individuals and families are having. I’ve seen first-hand how illuminating and inspiring personal experiences are for professionals involved in care and support, and I personally believe it should be mandatory for all dementia training to include these experiences. For this World Alzheimer’s Month, if you’re looking for some inspiration beyond this blog hunt down one of the many blogs, books, films or recordings that people with dementia have made or contributed to and you’ll see why nothing beats hearing from those actually LIVING with dementia.</span></div>
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<span style="font-family: "calibri";"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgsOI0iIn3PacRD2fega0JbUk0-IzyWXIPF6blh3Z-oyEiztOjQJXcVg53N4U502C4LdpzAgxKBQMJBttzEjtaiO0qopfMUQGw2KilN_JSbqu0tPpm-fzQvA2cumDnoaA7R4M4Qy6QFgERd/s1600/01signature.jpg" imageanchor="1" style="clear: left; color: #b63846; float: left; margin-bottom: 1em; margin-right: 1em; text-decoration: none;"><img alt="Beth x" border="0" height="98" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgsOI0iIn3PacRD2fega0JbUk0-IzyWXIPF6blh3Z-oyEiztOjQJXcVg53N4U502C4LdpzAgxKBQMJBttzEjtaiO0qopfMUQGw2KilN_JSbqu0tPpm-fzQvA2cumDnoaA7R4M4Qy6QFgERd/s200/01signature.jpg" style="-webkit-box-shadow: rgba(0, 0, 0, 0.2) 0px 0px 0px; border-bottom-left-radius: 0px; border-bottom-right-radius: 0px; border-top-left-radius: 0px; border-top-right-radius: 0px; border: 1px solid transparent; box-shadow: rgba(0, 0, 0, 0.2) 0px 0px 0px; padding: 8px; position: relative;" title="Beth x" width="200" /></a></span></div>
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<span lang="EN-US"><span style="font-family: "open sans"; font-size: 13px;"><span style="font-family: "calibri";"></span></span><br style="font-family: "Open Sans"; font-size: 13px;" /><span style="font-family: "open sans"; font-size: 13px;"><span style="font-family: "calibri";"></span></span><br style="font-family: "Open Sans"; font-size: 13px;" /><br style="font-family: "Open Sans"; font-size: 13px;" /><span style="font-family: "helvetica neue";"><br /></span><span style="background-color: white; font-family: "open sans"; font-size: 13px;"></span><span style="font-family: "helvetica neue";">You can follow me on Twitter: <a href="https://twitter.com/bethyb1886" style="color: #b63846; text-decoration: none;" target="_blank">@bethyb1886</a></span><br style="font-family: "Open Sans"; font-size: 13px;" /><span style="font-family: "helvetica neue";"><a href="https://www.facebook.com/D4Dementia/" style="color: #b63846; text-decoration: none;" target="_blank">Like D4Dementia on Facebook</a></span></span></div>
Bethhttp://www.blogger.com/profile/09727279217918012517noreply@blogger.com0United Kingdom55.378051 -3.4359729999999912.203021 -86.05316049999999 90 79.18121450000001tag:blogger.com,1999:blog-3778521335346901337.post-88696259385881536252019-08-19T09:00:00.000+01:002019-09-20T12:18:43.852+01:00What right do you have?<div class="Default" style="border: none; font-family: "Helvetica Neue"; font-size: 11pt; margin: 0cm 0cm 0.0001pt;">
<span lang="EN-US" style="background-color: white; font-family: "calibri" , sans-serif; font-size: 12pt;">With over 200 blogs on D4Dementia, some of them now 7 years old, I've decided to spend my 2019 year of blogging by re-visiting some of the topics I</span><span style="background-color: white; font-family: "calibri" , sans-serif; font-size: 12pt;">’ve </span><span lang="EN-US" style="background-color: white; font-family: "calibri" , sans-serif; font-size: 12pt;">covered previously, throwing fresh light on why they remain relevant, and updating them with some of my more recent experiences. This month, I want to look at human rights and sectioning.</span><span style="background-color: white; font-family: "calibri" , sans-serif; font-size: 12pt;"><o:p></o:p></span></div>
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<span lang="EN-US" style="background-color: white; font-family: "calibri" , sans-serif; font-size: 12pt;">Back in December 2017 I wrote <a href="http://d4dementia.blogspot.com/2017/12/resolve-to-embrace-human-rights.html" target="_blank">‘Resolve to embrace human rights’</a>, </span><span lang="EN-US" style="background-color: white; font-family: "calibri" , sans-serif; font-size: 12pt;">which outlined basic human rights, the framework for making decisions and the principles that govern a human rights based approach. </span><span style="background-color: white; font-family: "calibri" , sans-serif; font-size: 12pt;">In that blog, I said:</span></div>
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<i><span lang="EN-US" style="background-color: white; font-family: "calibri" , sans-serif; font-size: 12pt;">“I talk about human rights during my training on living well, or living better, with dementia. Although human rights fit into every aspect of living with dementia, I think presenting them in the context of 'living well' sends an important message that human rights are vital to the person</span><span style="background-color: white; font-family: "calibri" , sans-serif; font-size: 12pt;">’</span><span lang="EN-US" style="background-color: white; font-family: "calibri" , sans-serif; font-size: 12pt;">s quality of life.”</span></i></blockquote>
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<span lang="EN-US" style="background-color: white; font-family: "calibri" , sans-serif; font-size: 12pt;">That statement remains as true now as it did when I wrote it. What I suspect has changed for many people with dementia is that the hope of living well, or living better, has been severely eroded with the UK’s continual cuts to services. Any notion that the human rights of a person with dementia are likely to be severely affected as a result of these cuts doesn't seem to register with those who make these decisions.</span></div>
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<span lang="EN-US" style="background-color: white; font-family: "calibri" , sans-serif; font-size: 12pt;">This is perhaps most starkly illustrated when a person with dementia is sectioned, depriving them of many rights, most notably their liberty. I'm on the record as being against sectioning for people with dementia in all but the most extreme (and I mean extreme) circumstances, as I wrote in my 2016 blog, <a href="http://d4dementia.blogspot.com/2016/05/sectioning-people-with-dementia.html" target="_blank">‘Sectioning people with dementia’</a>:</span></div>
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<span lang="EN-US" style="background-color: white; font-family: "calibri" , sans-serif; font-size: 12pt;"><i>“Fortunately my father was never sectioned, which is just as well since I am opposed to it in relation to people with dementia in all but the most extreme circumstances. When I say extreme circumstances I'm talking about where a person with dementia is violently unwell and every effort has been made, prior to sectioning, to utilise every other avenue of care and support available.”</i></span></blockquote>
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<span lang="EN-US" style="background-color: white; font-family: "calibri" , sans-serif; font-size: 12pt;">Interestingly, my post on sectioning has become one of the most popular I’ve ever written on D4Dementia, something I would never have expected as I felt it was a bit of a niche topic when I wrote it and something that I hoped was only affecting a tiny minority of people.</span><span style="background-color: white; font-family: "calibri" , sans-serif; font-size: 12pt;"><o:p></o:p></span></div>
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<span lang="EN-US" style="background-color: white; font-family: "calibri" , sans-serif; font-size: 12pt;">Moreover, this popularity suggests to me (purely anecdotally and not scientifically) that this is a topic many people are concerned about or have experienced, and my email inbox backs that up. Since the post was published I’ve had numerous emails from adult children whose parents have been sectioned due to their dementia. They are bewildered, frightened and wondering what will happen next - and I’m talking about the sons and daughter’s emotions, so imagine how the mothers and fathers with dementia are feeling.</span><span style="background-color: white; font-family: "calibri" , sans-serif; font-size: 12pt;"><o:p></o:p></span></div>
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<span lang="EN-US" style="background-color: white; font-family: "calibri" , sans-serif; font-size: 12pt;">In addition, through my consultancy work I know of at least two people in different areas of England who have been sectioned - having been moved from care homes I’ve provided training for to other care homes (for reasons of geographical location) - as staff unfamiliar with these people and without the additional input I’d been providing felt that they couldn’t support these individuals.</span><span style="background-color: white; font-family: "calibri" , sans-serif; font-size: 12pt;"><o:p></o:p></span></div>
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<span lang="EN-US" style="background-color: white; font-family: "calibri" , sans-serif; font-size: 12pt;">Further evidence of instances of sectioning aren't hard to find - examples from a quick search include The Times in December 2018, <a href="https://www.thetimes.co.uk/article/dementia-patients-needlessly-sectioned-tts7s9hfm" target="_blank">‘Dementia patients needlessly sectioned’</a> </span><span lang="EN-US" style="background-color: white; font-family: "calibri" , sans-serif; font-size: 12pt;"><i>(subscription content)</i>, and the Daily Mail in May 2018, <a href="https://www.dailymail.co.uk/news/article-5778835/Manchester-father-Alzheimers-sectioned-ten-care-homes-say-care-him.html" target="_blank">‘Father, 71, with Alzheimer's is SECTIONED after a string of ten care homes refuse to take him in’</a>.</span></div>
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<span lang="EN-US" style="background-color: white; font-family: "calibri" , sans-serif; font-size: 12pt;">For me, this amounts to showing that the cracks in the health and care system are all too obvious, either because families are struggling alone and unsupported or because some professionals haven’t been trained in non-drug therapy care and support techniques that can help a person who is experiencing more severe dementia symptoms, leaving sectioning as the ‘way out’.<o:p></o:p></span></div>
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<span style="background-color: white; font-family: "calibri" , sans-serif; font-size: 12pt;">I wrote an eBook for a client of mine, MacIntyre, all about <a href="https://www.macintyrecharity.org/our-expertise/resources/changed-behaviour-wellbeing-for-life/" target="_blank">Changed Behaviour</a>,</span><span style="background-color: white; font-family: "calibri" , sans-serif; font-size: 12pt;"> with lots of practical tips and advice that could help anyone, be they a family member or a professional. To expand on that further, I went on to write a series of 11 Changed Behaviour booklets that look at different ‘behaviours’ as they may be described (words like ‘aggression’ aren’t my preferred terminology but needed in this instance for staff to have a logical reference point), and again are packed full of practical, non-drug, non-restraint approaches that were approved by MacIntyre’s Positive Behaviour Support (PBS) team. Four of them have been published (I hope more will be in the future) and can be found under the following links:<o:p></o:p></span></div>
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<a href="https://www.macintyrecharity.org/our-expertise/resources/verbal-aggression-changed-behaviour/" target="_blank">https://www.macintyrecharity.org/our-expertise/resources/verbal-aggression-changed-behaviour/</a></div>
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<a href="https://www.macintyrecharity.org/our-expertise/resources/changed-behaviour-physical-aggression/" target="_blank">https://www.macintyrecharity.org/our-expertise/resources/changed-behaviour-physical-aggression/</a></div>
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<a href="https://www.macintyrecharity.org/our-expertise/resources/paranoia-and-accusations-changed-behaviour/" target="_blank">https://www.macintyrecharity.org/our-expertise/resources/paranoia-and-accusations-changed-behaviour/</a></div>
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<a href="https://www.macintyrecharity.org/our-expertise/resources/changed-behaviour-repetition/" target="_blank">https://www.macintyrecharity.org/our-expertise/resources/changed-behaviour-repetition/</a></div>
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<span lang="EN-US" style="background-color: white; font-family: "calibri" , sans-serif; font-size: 12pt;">These ideas and approaches aren’t revolutionary, but they do require the person practicing them to first and foremost believe in taking a compassionate, human approach that is based around supporting the person in their rights and pursuing the least restrictive option to support their symptoms. <o:p></o:p></span></div>
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<span lang="EN-US" style="background-color: white; font-family: "calibri" , sans-serif; font-size: 12pt;">In my view, a basic education in dementia-related human rights isn’t hard to obtain - there are numerous resources that make a great starting point, including the Dementia Engagement and Empowerment Project (DEEP) booklet, <a href="http://dementiavoices.org.uk/wp-content/uploads/2016/11/Our-dementia-Our-rights-booklet.pdf" target="_blank">‘Our Dementia, Our Rights’</a> </span><span lang="EN-US" style="background-color: white; font-family: "calibri" , sans-serif; font-size: 12pt;">which states:<o:p></o:p></span></div>
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<span lang="EN-US" style="background-color: white; font-family: "calibri" , sans-serif; font-size: 12pt;">“The more we talk about and use the rights of people with dementia, the more our services, culture and attitudes will change for the better.”</span><span style="background-color: white; font-family: "calibri" , sans-serif; font-size: 12pt;"><o:p></o:p></span></div>
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<span lang="EN-US" style="background-color: white; font-family: "calibri" , sans-serif; font-size: 12pt;">Oh how that statement needs to come true, as <a href="https://www.dementiaallianceinternational.org/human-rights/" target="_blank">Dementia Alliance International</a> will attest to in all of the work they have done to raise the issue of human rights in dementia care</span><span lang="EN-US" style="background-color: white; font-family: "calibri" , sans-serif; font-size: 12pt;">. Sadly, the urgency of this work was further brought home to me <a href="https://twitter.com/bethyb1886/status/1131966264505753600" target="_blank">back in May</a> when I was invited to quote to provide ‘challenging behaviour’ dementia training including a learning objective ‘using restraint’. </span><span style="background-color: white; font-family: "calibri" , sans-serif; font-size: 12pt;">I cannot imagine any mention of human rights within such a training framework, and it seems in a social care context to be just a stone’s throw away from sectioning someone. </span></div>
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<span lang="EN-US" style="background-color: white; font-family: "calibri" , sans-serif; font-size: 12pt;">Which leaves me to pose one simple question: If some care providers can offer first class, compassionate support that respects the person and their rights and would never require restraint, why can’t everyone? Or perhaps the more pertinent question to substandard care providers who aren't respecting human rights should be: What <b>right </b>do you have to take this approach?</span><br />
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<span style="font-family: "calibri";"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgsOI0iIn3PacRD2fega0JbUk0-IzyWXIPF6blh3Z-oyEiztOjQJXcVg53N4U502C4LdpzAgxKBQMJBttzEjtaiO0qopfMUQGw2KilN_JSbqu0tPpm-fzQvA2cumDnoaA7R4M4Qy6QFgERd/s1600/01signature.jpg" imageanchor="1" style="clear: left; color: #b63846; float: left; margin-bottom: 1em; margin-right: 1em; text-decoration: none;"><img alt="Beth x" border="0" height="98" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgsOI0iIn3PacRD2fega0JbUk0-IzyWXIPF6blh3Z-oyEiztOjQJXcVg53N4U502C4LdpzAgxKBQMJBttzEjtaiO0qopfMUQGw2KilN_JSbqu0tPpm-fzQvA2cumDnoaA7R4M4Qy6QFgERd/s200/01signature.jpg" style="-webkit-box-shadow: rgba(0, 0, 0, 0.2) 0px 0px 0px; border-bottom-left-radius: 0px; border-bottom-right-radius: 0px; border-top-left-radius: 0px; border-top-right-radius: 0px; border: 1px solid transparent; box-shadow: rgba(0, 0, 0, 0.2) 0px 0px 0px; padding: 8px; position: relative;" title="Beth x" width="200" /></a></span></div>
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Bethhttp://www.blogger.com/profile/09727279217918012517noreply@blogger.com0United Kingdom55.378051 -3.4359729999999912.203021 -86.05316049999999 90 79.18121450000001tag:blogger.com,1999:blog-3778521335346901337.post-85472908980487298322019-07-22T09:00:00.000+01:002019-08-21T11:17:18.348+01:00The private world of incontinence<div class="Default" style="border: none; font-family: "Helvetica Neue"; font-size: 11pt; margin: 0cm 0cm 0.0001pt;">
<span lang="EN-US" style="background-color: white; font-family: "helvetica"; font-size: 12pt;">With over 200 blogs on D4Dementia, some of them now 7 years old, I've decided to spend my 2019 year of blogging by re-visiting some of the topics I’ve covered previously, throwing fresh light on why they remain relevant, and updating them with some of my more recent experiences. This month, I want to look at continence.</span><span lang="EN-US" style="background-color: white; font-family: "helvetica"; font-size: 12pt;"><o:p></o:p></span></div>
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<span lang="EN-US" style="font-family: "helvetica"; font-size: 12pt;">In June 2013 I wrote a blog entitled <a href="http://d4dementia.blogspot.com/2013/06/an-urgent-need-to-understand.html" target="_blank">‘An urgent need to understand’</a></span><span lang="EN-US" style="font-family: "helvetica"; font-size: 12pt;">, which talked about some of the experiences we’d had with my dad’s incontinence and ways in which a person can be supported to maintain their continence. In that blog I said:</span></div>
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<span lang="EN-US" style="font-family: "helvetica"; font-size: 12pt;"><i>“The devastation that incontinence can cause both the person with it, and potentially a spouse or family member who is caring for them, is immense. The more private a person is the harder it will be felt, which was certainly true for my father, who was incontinent for nine years.”</i></span><span style="font-family: "helvetica"; font-size: 12pt;"> </span></blockquote>
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<span lang="EN-US" style="font-family: "helvetica"; font-size: 12pt;">Continence, perhaps more than any other issue, is strongly linked to privacy. In my experiences as a mum I know that not long after a child is potty trained they begin to want privacy when going to the toilet. Such privacy soon becomes the norm for the rest of their life, unless incontinence accompanies a progressive health condition like dementia, in which case needing the support of another person, whether they are your own family or a health or care professional, becomes the new norm. Just </span><span lang="EN-US" style="font-family: "helvetica"; font-size: 12pt;">because it’s the norm, however, doesn’t mean it feels normal or will ever feel normal.</span><span lang="EN-US" style="font-family: "helvetica"; font-size: 12pt;"><o:p></o:p></span></div>
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<span lang="EN-US" style="font-family: "helvetica"; font-size: 12pt;">Continence problems are strongly associated with ageing, but certainly don’t exclusively affect older people. Last month marked <a href="https://wfip.org/world-continence-week-2019/" target="_blank">World Continence Week</a>, with a statistic that bladder weakness alone affects 1 in 3 people and is more common than hayfever.</span></div>
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<span lang="EN-US" style="font-family: "helvetica"; font-size: 12pt;">Continence has come onto my radar many times since I wrote ‘An urgent need to understand’. Professionally this has predominately come through my training and mentoring consultancy work, with one particularly striking example being when homecare staff from one of my consultancy </span><span lang="EN-US" style="font-family: "helvetica"; font-size: 12pt;">clients came to me to discuss a lady living with dementia who was repeatedly developing bladder infections and soiling herself. <o:p></o:p></span></div>
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<span lang="EN-US" style="font-family: "helvetica"; font-size: 12pt;">The infections increased the lady’s confusion, and despite trying to provide optimal support staff said that they felt they were failing this lady every time she got another infection. I encouraged staff to really think about how the support being provided was responding to this lady over the course of each 24-hour period. Care staff often only analyse the time they spend with the people they support, rather than what is happening when they aren’t there.<o:p></o:p></span></div>
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<span lang="EN-US" style="font-family: "helvetica"; font-size: 12pt;">It transpired that this lady was only using the toilet when staff weren’t present, and would often put off going to the toilet for many hours purely because she was confused about the time care workers would visit and concerned about her privacy (staff learnt that this lady had had a bad experience with a previous care worker during a trip to the toilet).</span><span lang="EN-US" style="font-family: "helvetica"; font-size: 12pt;"><o:p></o:p></span></div>
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<span lang="EN-US" style="font-family: "helvetica"; font-size: 12pt;">Many different approaches were taken to resolve this issue, including ensuring the lady had a dementia clock so that she knew what the time was, a personalised schedule that was clear <u>to her</u> for when her care visits were, and a lock on her toilet door (that could be opened from the outside in an emergency).</span><span lang="EN-US" style="font-family: "helvetica"; font-size: 12pt;"><o:p></o:p></span></div>
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<span lang="EN-US" style="font-family: "helvetica"; font-size: 12pt;">Simple measures, but alongside staff really understanding this lady’s need for privacy for the first time they proved to be the difference in supporting this lady to use the toilet more regularly, thus reducing the recurrent bladder infections she had and improving her quality of life as she soiled herself less. <o:p></o:p></span></div>
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<span lang="EN-US" style="font-family: "helvetica"; font-size: 12pt;">I would always encourage anyone supporting a person who is struggling with continence to think about the bigger picture, considering how the environment and the person’s routines and plans for the day are affecting their continence. If the person’s day-to-day life isn’t supporting them to use the toilet as often as they need to, problems are inevitable.</span><span lang="EN-US" style="font-family: "helvetica"; font-size: 12pt;"><o:p></o:p></span></div>
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<span lang="EN-US" style="font-family: "helvetica"; font-size: 12pt;">Continence hasn’t just come onto my radar through my experiences with my dad and my work, however. On a personal level, continence is something that my midwife was really open with me about during my pre and post-natal care when I had our daughter. <o:p></o:p></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjxg0YaXxUYKLglNI7sQXafy1KEHNWVkjrVOHKUgzPXXH00-X_FoOw2hMKrMIOuZHUX5PHoo9SWxKWRu2QaAM_sorM8OpHgFBS53mzNZhIdtvp0PH7rlgKT0A1Fxn7f3VXg9NcLYcfIf2AZ/s1600/World+Continence+Week.png" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em; text-align: center;"><img border="0" data-original-height="1128" data-original-width="1600" height="225" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjxg0YaXxUYKLglNI7sQXafy1KEHNWVkjrVOHKUgzPXXH00-X_FoOw2hMKrMIOuZHUX5PHoo9SWxKWRu2QaAM_sorM8OpHgFBS53mzNZhIdtvp0PH7rlgKT0A1Fxn7f3VXg9NcLYcfIf2AZ/s320/World+Continence+Week.png" width="320" /></a><span lang="EN-US" style="font-family: "helvetica"; font-size: 12pt;">Any lady who’s has a baby will have heard the iconic words, “Do your pelvic floor exercises!” </span><span lang="EN-US" style="font-family: "helvetica"; font-size: 12pt;"></span><span lang="EN-US" style="font-family: "helvetica"; font-size: 12pt;">Pelvic floor exercises aren’t just for women who’ve recently had a baby though. I’d argue that they are important throughout all of life, as the stat from World Continence Week ‘Prolapse can affect half of all women over 50’ shows. Although pelvic floor exercises alone won’t cure prolapse, they are often recommended alongside other treatments.</span></div>
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<span lang="EN-US" style="font-family: "helvetica"; font-size: 12pt;">I’ve always felt that preventing incontinence is a great deal easier than treating the physical, mental and emotional effects of incontinence purely because incontinence is about so much more than just wearing a pad. As I said in my ‘An urgent need to understand’ blog:</span></div>
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<span lang="EN-US" style="font-family: "helvetica"; font-size: 12pt;"><i>“Changing our attitudes towards continence, and breaking down the taboo’s associated with going to the toilet, must be a key priority if we are to improve the care provided to everyone who is living with dementia.”</i></span></blockquote>
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<span style="font-family: "calibri";"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgsOI0iIn3PacRD2fega0JbUk0-IzyWXIPF6blh3Z-oyEiztOjQJXcVg53N4U502C4LdpzAgxKBQMJBttzEjtaiO0qopfMUQGw2KilN_JSbqu0tPpm-fzQvA2cumDnoaA7R4M4Qy6QFgERd/s1600/01signature.jpg" imageanchor="1" style="clear: left; color: #b63846; float: left; margin-bottom: 1em; margin-right: 1em; text-decoration: none;"><img alt="Beth x" border="0" height="98" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgsOI0iIn3PacRD2fega0JbUk0-IzyWXIPF6blh3Z-oyEiztOjQJXcVg53N4U502C4LdpzAgxKBQMJBttzEjtaiO0qopfMUQGw2KilN_JSbqu0tPpm-fzQvA2cumDnoaA7R4M4Qy6QFgERd/s200/01signature.jpg" style="-webkit-box-shadow: rgba(0, 0, 0, 0.2) 0px 0px 0px; border-bottom-left-radius: 0px; border-bottom-right-radius: 0px; border-top-left-radius: 0px; border-top-right-radius: 0px; border: 1px solid transparent; box-shadow: rgba(0, 0, 0, 0.2) 0px 0px 0px; padding: 8px; position: relative;" title="Beth x" width="200" /></a></span></div>
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<span lang="EN-US"><span style="font-family: "open sans"; font-size: 13px;"><span style="font-family: "calibri";"></span></span><br style="font-family: "Open Sans"; font-size: 13px;" /><span style="font-family: "open sans"; font-size: 13px;"><span style="font-family: "calibri";"></span></span><br style="font-family: "Open Sans"; font-size: 13px;" /><br style="font-family: "Open Sans"; font-size: 13px;" /><span style="font-family: "helvetica neue";"><br /></span><span style="background-color: white; font-family: "open sans"; font-size: 13px;"></span><span style="font-family: "helvetica neue";">You can follow me on Twitter: <a href="https://twitter.com/bethyb1886" style="color: #b63846; text-decoration: none;" target="_blank">@bethyb1886</a></span><br style="font-family: "Open Sans"; font-size: 13px;" /><span style="font-family: "helvetica neue";"><a href="https://www.facebook.com/D4Dementia/" style="color: #b63846; text-decoration: none;" target="_blank">Like D4Dementia on Facebook</a></span></span></div>
Bethhttp://www.blogger.com/profile/09727279217918012517noreply@blogger.com0United Kingdom55.378051 -3.4359729999999912.203021 -86.05316049999999 90 79.18121450000001tag:blogger.com,1999:blog-3778521335346901337.post-1060157890887580522019-06-10T09:00:00.000+01:002019-07-09T11:55:59.032+01:00It could be you<div class="MsoNormal" style="border: none; font-family: "Times New Roman", serif; margin: 0cm 0cm 0.0001pt;">
<span lang="EN-US" style="font-family: "helvetica neue"; font-size: 13pt;">With over 200 blogs on D4Dementia, some of them now 7 years old, I've decided to spend my 2019 year of blogging by re-visiting some of the topics I’ve covered previously, throwing fresh light on why they remain relevant, and updating them with some of my more recent experiences. This month, I want to look at the reality of being an unpaid family carer.<o:p></o:p></span></div>
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<span lang="EN-US" style="font-family: "helvetica neue"; font-size: 13pt;">I’ve blogged for <a href="https://www.carersweek.org/" target="_blank">Carers Week</a> every year since D4Dementia began, and while I was looking back at <a href="http://d4dementia.blogspot.com/2012/05/welcome-to-d-for-dementia.html" target="_blank">the start of D4Dementia</a> for the blog’s <a href="http://d4dementia.blogspot.com/2019/05/d4dementia-7th-birthday.html" target="_blank">7th birthday</a>, I revisited the two blogs I published during Carers Week 2012.<o:p></o:p></span></div>
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<span lang="EN-US" style="font-family: "helvetica neue"; font-size: 13pt;"><a href="http://d4dementia.blogspot.com/2012/06/carers-job-description.html" target="_blank">‘The carers job description’</a> was the more hard-hitting of the two, highlighting the relentless and exhausting aspects of being an unpaid family carer, while <a href="http://d4dementia.blogspot.com/2012/06/be-inspired-be-very-inspired.html" target="_blank">‘Be inspired, be very inspired’</a> was the complete opposite as I talked about how amazing carers are.<o:p></o:p></span></div>
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<span lang="EN-US" style="font-family: "helvetica neue"; font-size: 13pt;">While many blog posts may be reactionary and news-led, these two stand the test of time with quotes that remain as true today as they were then. I began ‘The carers job description’ by saying:</span></div>
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<i><span lang="EN-US" style="font-family: "helvetica neue"; font-size: 13pt;">“If you had to be isolated, unsupported and fight the system, would you apply to be an unpaid carer?”</span></i></blockquote>
<span style="font-family: "helvetica neue"; font-size: 13pt;">The reality of isolation, lack of support and having to fight systems every step of the way is a story I have heard countless times since - often, of course, from family carers whose loved ones have dementia, but also from numerous people in other caring roles including carers whose loved ones have different health conditions, sandwich carers and parent carers.</span><br />
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<span lang="EN-US" style="font-family: "helvetica neue"; font-size: 13pt;">I’ve seen carers break down talking about the struggles they face, and asking simple questions like, “Why can’t this be easier?” and, “I have no idea what to do and no one to ask.” In a public arena, arguably one of the most powerful carer stories I have ever heard came from Sheila Wainwright, excerpts of which I shared in my 2013 blog, <a href="http://d4dementia.blogspot.com/2013/11/caring-for-carers.html" target="_blank">'Caring for carers'</a>:</span></div>
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<span lang="EN-US" style="font-family: "helvetica neue"; font-size: 13pt;"><i>“Sheila told of the ‘Shear daily misery’ of their life, how ‘No one’ answered her questions, and that over the years ‘Many people came and went, and came and went’ but there was simply no continuity of support for her or her husband. Sheila admitted that she was, 'Planning how to end our lives before a call to the <a href="https://www.dementiauk.org/get-support/dementia-helpline-alzheimers-helpline/" target="_blank">Admiral Nurse Dementia Helpline</a> saved my life.’ Her husband eventually passed away in hospital after an agonising end to his life, with Sheila movingly recalling the actions of a nurse as her husband was finally at rest, ‘That sprig of flowers put on his chest when he died was one kindness I will never forget.’”</i></span></blockquote>
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<span lang="EN-US" style="font-family: "helvetica neue"; font-size: 13pt;">I went on to say in 'Caring for carers':</span></div>
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<i style="font-family: "Helvetica Neue"; font-size: 13pt;">“It can never be acceptable that we wait until someone’s death before we show kindness to their carer who has valiantly stood by their side as, in Sheila’s words, her husband, ‘Screaming and snarled, pooed in the shower and pushed it down the drain, lost the ability to walk and talk, and went from 13 stone to just 7 stone when he passed away.’”</i></blockquote>
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<span lang="EN-US" style="font-family: "helvetica neue"; font-size: 13pt;">Sheila’s story has stayed with me ever since, and has been joined by stories from many other carers, past and present, who I’ve met in the months and years since I wrote ‘Be inspired, be very inspired’ but who that blog could easily have been written about, particularly when I said:</span></div>
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<span lang="EN-US" style="font-family: "helvetica neue"; font-size: 13pt;"><i>“There is something that touches your soul when you hear the individual stories of how people care for those they love the most.”</i></span></blockquote>
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<span lang="EN-US" style="font-family: "helvetica neue"; font-size: 13pt;">These personal accounts are incredibly hard-hitting, but what we all need to appreciate is that while carer’s stories shape our understanding and provide an immensely powerful narrative that we’ve seen countless times, not least in the recent BBC Panorama programmes <a href="https://www.bbc.co.uk/iplayer/episode/m0005jpf/panorama-crisis-in-care-part-1-who-cares" target="_blank">‘Crisis in Care – Who Cares?’</a> and <a href="https://www.bbc.co.uk/iplayer/episode/m0005qqr/panorama-crisis-in-care-part-2-who-pays" target="_blank">‘Crisis in Care – Who Pays?’</a>, for the people living those lives they are a real, raw reality, not something to read or watch, agree with and then at best leave the issues they raise at the bottom of society’s ‘to do’ list. As I said in ‘Be inspired, be very inspired’:</span></div>
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<span lang="EN-US" style="font-family: "helvetica neue"; font-size: 13pt;">As the thoughts of charities, businesses and organisations turn to carers again for Carers Week, which is themed this year around isolation, the stats are stark:</span></div>
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<li><span style="font-family: "helvetica neue"; font-size: 13pt;">One in three unpaid carers (32 per cent) looking after a loved one who is older, disabled or seriously ill has felt lonely or isolated because they are uncomfortable talking to friends about their caring role.</span><span style="font-family: "helvetica neue"; font-size: 13pt;"> </span></li>
<li><span style="font-family: "helvetica neue"; font-size: 13pt;">(32 per cent) say they feel socially isolated at work because of their caring responsibilities.</span></li>
<li><span style="font-family: "helvetica neue"; font-size: 13pt;">(74%) feel their caring role isn't understood or valued by their community. An unwillingness to talk about caring has for many carers created a barrier to their inclusion at work, home and in public life.</span></li>
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<span style="font-size: x-small;"><span style="font-family: "helvetica neue";">(Data from </span><a href="https://www.carersweek.org/media-and-updates/item/487547-carers-week-2019-launch" style="font-family: "helvetica neue";" target="_blank">https://www.carersweek.org/media-and-updates/item/487547-carers-week-2019-launch</a><span style="font-family: "helvetica neue";">)</span></span><br />
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<span lang="EN-US" style="font-family: "helvetica neue"; font-size: 13pt;">Add in the human emotions that lie behind those statistics and I think we can all agree that more must be done to support carers. The problem, of course, is that those who understand what being a carer really means have been saying as much for years. When this will result in actual concrete support services that aren’t a postcode lottery remains to be seen, b</span><span lang="EN-US" style="font-family: "helvetica neue"; font-size: 13pt;">ut those who ignore this issue do so at their peril. </span><br />
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<span lang="EN-US" style="font-family: "helvetica neue"; font-size: 13pt;">There are currently 6.5 million people in the UK who are carers. Every day another 6,000 people take on a caring responsibility and there are predicted to be 9m carers by 2037. </span><span style="font-family: "helvetica neue"; font-size: 13pt;">So, to quote a famous lottery slogan: “It could be you.”</span></div>
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<span style="font-family: "helvetica neue"; font-size: 11pt;">Until next time...</span></div>
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<span style="font-family: "calibri";"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgsOI0iIn3PacRD2fega0JbUk0-IzyWXIPF6blh3Z-oyEiztOjQJXcVg53N4U502C4LdpzAgxKBQMJBttzEjtaiO0qopfMUQGw2KilN_JSbqu0tPpm-fzQvA2cumDnoaA7R4M4Qy6QFgERd/s1600/01signature.jpg" imageanchor="1" style="clear: left; color: #b63846; float: left; margin-bottom: 1em; margin-right: 1em; text-decoration: none;"><img alt="Beth x" border="0" height="98" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgsOI0iIn3PacRD2fega0JbUk0-IzyWXIPF6blh3Z-oyEiztOjQJXcVg53N4U502C4LdpzAgxKBQMJBttzEjtaiO0qopfMUQGw2KilN_JSbqu0tPpm-fzQvA2cumDnoaA7R4M4Qy6QFgERd/s200/01signature.jpg" style="-webkit-box-shadow: rgba(0, 0, 0, 0.2) 0px 0px 0px; border-bottom-left-radius: 0px; border-bottom-right-radius: 0px; border-top-left-radius: 0px; border-top-right-radius: 0px; border: 1px solid transparent; box-shadow: rgba(0, 0, 0, 0.2) 0px 0px 0px; padding: 8px; position: relative;" title="Beth x" width="200" /></a></span></div>
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<span lang="EN-US"><span style="font-family: "open sans"; font-size: 13px;"><span style="font-family: "calibri";"></span></span><br style="font-family: "Open Sans"; font-size: 13px;" /><span style="font-family: "open sans"; font-size: 13px;"><span style="font-family: "calibri";"></span></span><br style="font-family: "Open Sans"; font-size: 13px;" /><br style="font-family: "Open Sans"; font-size: 13px;" /><span style="font-family: "helvetica neue";"><br /></span><span style="background-color: white; font-family: "open sans"; font-size: 13px;"></span><span style="font-family: "helvetica neue";">You can follow me on Twitter: <a href="https://twitter.com/bethyb1886" style="color: #b63846; text-decoration: none;" target="_blank">@bethyb1886</a></span><br style="font-family: "Open Sans"; font-size: 13px;" /><span style="font-family: "helvetica neue";"><a href="https://www.facebook.com/D4Dementia/" style="color: #b63846; text-decoration: none;" target="_blank">Like D4Dementia on Facebook</a></span></span></div>
Bethhttp://www.blogger.com/profile/09727279217918012517noreply@blogger.com0United Kingdom55.378051 -3.4359729999999912.203021 -86.05316049999999 90 79.18121450000001tag:blogger.com,1999:blog-3778521335346901337.post-13943108013593811042019-05-20T09:00:00.001+01:002019-06-04T11:41:56.399+01:00We are family – A Dementia Action Week blog<div class="Default" style="border: none; font-family: "Helvetica Neue"; font-size: 11pt; margin: 0cm 0cm 0.0001pt;">
<span lang="EN-US" style="background-color: white; font-family: "helvetica"; font-size: 12pt;">With over 200 blogs on D4Dementia now, some of them approaching 7 years old this month, I've decided to spend my 2019 year of blogging by re-visiting some of the topics I’ve covered previously, throwing fresh light on why they remain relevant, and updating them with some of my more recent experiences. This month, for Dementia Action Week (DAW2019) I want to highlight a previous DAW blog and tell you Hazel and Bill’s* story.<o:p></o:p></span></div>
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<span lang="EN-US" style="background-color: white; font-family: "helvetica"; font-size: 12pt;">For DAW2017, I wrote a blog entitled <a href="http://d4dementia.blogspot.com/2017/05/five-things-i-wish-id-known-before-my.html" target="_blank">‘Five things I wish I’d known before my dad’s dementia’</a>. </span><span lang="EN-US" style="background-color: white; font-family: "helvetica"; font-size: 12pt;">In that blog I said:</span><br />
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<span lang="EN-US" style="background-color: white; font-family: "helvetica"; font-size: 12pt;"><i>"It may seem remarkably obvious, but dementia changes lives. It REALLY changes lives. The problem with telling people that is, until you've experienced it, you don't realise just how much."</i></span></blockquote>
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<span lang="EN-US" style="background-color: white; font-family: "helvetica"; font-size: 12pt;">Those words are as true today as they were two years ago, and for DAW2019 I want to share a particularly striking example of how dementia has changed one couple’s life, leaving them on the periphery of society.</span></div>
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<span lang="EN-US" style="font-family: "helvetica"; font-size: 12pt;">A few weeks ago I had a chance encounter with a lady, Hazel, who had been diagnosed with dementia just over a year ago, and her husband Bill, in a cafe. We got chatting as they watched our 3-year-old playing and we ended up having a long conversation. <o:p></o:p></span></div>
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<span lang="EN-US" style="font-family: "helvetica"; font-size: 12pt;">Hazel and Bill told me they’d never had any children and were only children themselves, with no extended family. They said they went to the cafe once a month because it was somewhere they could ‘watch the world go by’. They have their groceries delivered, because supermarkets are too noisy and chaotic, and trips to their GP practice are daunting as it’s so big and impersonal with its electronic check-in system. <o:p></o:p></span></div>
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<span lang="EN-US" style="font-family: "helvetica"; font-size: 12pt;">Hazel and Bill live in a rural location, and </span><span lang="EN-US" style="font-family: "helvetica"; font-size: 12pt;">said their main company comes from the birds who visit their garden and a neighbouring cat who also takes an interest in the birds! They said they’d never met the owners of the cat - new people had moved into their neighbourhood a few months ago but ‘kept themselves to themselves’.<o:p></o:p></span><br />
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<span lang="EN-US" style="font-family: "helvetica"; font-size: 12pt;">Reading Hazel and Bill's story, it would be tempting to think that their circumstances are unique. After all, most people have <i>some</i> family and go out <i>more </i>than once a month. Except I don't believe Hazel and Bill's circumstances are unique. If you've never discovered <a href="https://ageingwithoutchildrenconsultancy.com/" target="_blank">Ageing Well Without Children</a></span><span style="font-family: "helvetica"; font-size: 12pt;"> I urge you to have a look. Their stats tell us that the number of people over 65 without adult children is currently in excess of 1.2 million, and is set to rise to 2 million by 2030. Moreover, in these days where you can order online and get just about every conceivable item delivered to your home, you don't need to go out. I certainly avoid the shops with our toddler!</span></div>
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<span lang="EN-US" style="font-family: "helvetica"; font-size: 12pt;">For people like Hazel and Bill, being so isolated can have some undesirable consequences. It’s known that <a href="https://www.thelancet.com/infographics/dementia2017" target="_blank">social interaction is a key component in reducing dementia risk</a>, and if a person has already developed dementia, social interaction can help to improve their quality of life and wellbeing.</span></div>
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<span lang="EN-US" style="font-family: "helvetica"; font-size: 12pt;">Then of course there is the impact on Hazel and Bill’s relationship. As Hazel built a lego castle with our daughter, Bill said to me quietly that he wonders how he will cope as Hazel’s dementia progresses. He says he’s keeping their heads above water for now, but feels lonely and worries about what the future might hold. </span><span lang="EN-US" style="font-family: "helvetica"; font-size: 12pt;"><o:p></o:p></span></div>
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<span lang="EN-US" style="font-family: "helvetica"; font-size: 12pt;">Hazel and Bill left the cafe when more customers arrived and it became too noisy for Hazel. Bill said it was best to embark upon the drive home before Hazel became too restless, as she struggles with the movement in the car and it’s getting harder and harder to persuade Hazel to even get into the car now.</span><span lang="EN-US" style="font-family: "helvetica"; font-size: 12pt;"><o:p></o:p></span></div>
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<span lang="EN-US" style="font-family: "helvetica"; font-size: 12pt;">They both said that watching our daughter had been a joy, and they hoped to see us again. I made some suggestions of support mechanisms that Hazel and Bill might want to access, including the <a href="https://www.dementiauk.org/get-support/dementia-helpline-alzheimers-helpline/" target="_blank">Admiral Nurse Dementia Helpline</a>, the <a href="https://www.dementiavoices.org.uk/" target="_blank">Dementia Engagement and Empowerment Project (DEEP)</a>, <a href="https://dementiacarers.org.uk/" target="_blank">Dementia Carers Count</a> and <a href="http://www.tide.uk.net/" target="_blank">Together in Dementia Everyday (TIDE)</a>, but I’m not sure they will ever make those connections. Perhaps most tellingly of all though, when I asked Hazel and Bill if they had ever attended any local support groups, or accessed any dementia friendly services, Hazel replied and said: “We used to go out more, but we don’t fit in now I’ve got this” (and pointed to her head).<o:p></o:p></span></div>
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<span lang="EN-US" style="font-family: "helvetica"; font-size: 12pt;">The sadness I felt at that last comment has stayed with me, driving my desire to improve the lives of people living with dementia. I hope it might have the same impact upon you too.<o:p></o:p></span></div>
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<span lang="EN-US" style="font-family: "helvetica"; font-size: 12pt;">So, how do we reach out to people like Hazel and Bill? They rarely have contact with any services, so opportunities are few and far between. That busy GP surgery is one contact point, and their Memory Clinic appointment(s) would have been another. Then there is the cafe - the one place Hazel and Bill go to of their own free will. I asked the waitress who came to clear our table if it was a particular goal of theirs to be welcoming to people with dementia. She said no, adding with a smile: “Our customers are our family.”<o:p></o:p></span></div>
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<span lang="EN-US" style="font-family: "helvetica"; font-size: 12pt;">As individuals we can all do our bit to make people with dementia feel included and welcome, no matter who we are or what our service is. We don’t have to do it in a formal way - every way helps! And I don’t believe that it requires any particularly special skills - offering a safe space, a friendly smile and a simple enquiry about how someone is, or asking if you can help.<o:p></o:p></span></div>
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<span lang="EN-US" style="font-family: "helvetica"; font-size: 12pt;">We can all be people of action this and every week of the year, adopting that motto from the café – ‘We are family’. <o:p></o:p></span><br />
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<span lang="EN-US" style="font-family: "helvetica"; font-size: 12pt;"><span style="font-family: "helvetica neue"; font-size: xx-small;">(*Names changed to protect identity)</span></span><br />
<span style="font-size: 11pt;">Until next time...</span><br />
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<span style="font-family: "calibri";"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgsOI0iIn3PacRD2fega0JbUk0-IzyWXIPF6blh3Z-oyEiztOjQJXcVg53N4U502C4LdpzAgxKBQMJBttzEjtaiO0qopfMUQGw2KilN_JSbqu0tPpm-fzQvA2cumDnoaA7R4M4Qy6QFgERd/s1600/01signature.jpg" imageanchor="1" style="clear: left; color: #b63846; float: left; margin-bottom: 1em; margin-right: 1em; text-decoration: none;"><img alt="Beth x" border="0" height="98" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgsOI0iIn3PacRD2fega0JbUk0-IzyWXIPF6blh3Z-oyEiztOjQJXcVg53N4U502C4LdpzAgxKBQMJBttzEjtaiO0qopfMUQGw2KilN_JSbqu0tPpm-fzQvA2cumDnoaA7R4M4Qy6QFgERd/s200/01signature.jpg" style="-webkit-box-shadow: rgba(0, 0, 0, 0.2) 0px 0px 0px; border-bottom-left-radius: 0px; border-bottom-right-radius: 0px; border-top-left-radius: 0px; border-top-right-radius: 0px; border: 1px solid transparent; box-shadow: rgba(0, 0, 0, 0.2) 0px 0px 0px; padding: 8px; position: relative;" title="Beth x" width="200" /></a></span></div>
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<span lang="EN-US"><span style="font-family: "open sans"; font-size: 13px;"><span style="font-family: "calibri";"></span></span><br style="font-family: "Open Sans"; font-size: 13px;" /><span style="font-family: "open sans"; font-size: 13px;"><span style="font-family: "calibri";"></span></span><br style="font-family: "Open Sans"; font-size: 13px;" /><br style="font-family: "Open Sans"; font-size: 13px;" /><span style="font-family: "helvetica neue";"><br /></span><span style="background-color: white; font-family: "open sans"; font-size: 13px;"></span><span style="font-family: "helvetica neue";">You can follow me on Twitter: <a href="https://twitter.com/bethyb1886" style="color: #b63846; text-decoration: none;" target="_blank">@bethyb1886</a></span><br style="font-family: "Open Sans"; font-size: 13px;" /><span style="font-family: "helvetica neue";"><a href="https://www.facebook.com/D4Dementia/" style="color: #b63846; text-decoration: none;" target="_blank">Like D4Dementia on Facebook</a></span></span></div>
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Bethhttp://www.blogger.com/profile/09727279217918012517noreply@blogger.com0United Kingdom55.378051 -3.4359729999999912.203021 -86.05316049999999 90 79.18121450000001tag:blogger.com,1999:blog-3778521335346901337.post-58889542116423569862019-05-20T08:00:00.000+01:002019-05-23T11:46:45.676+01:00D4Dementia 7th Birthday<div class="Default" style="border: none; font-family: "Helvetica Neue"; font-size: 11pt; margin: 0cm 0cm 0.0001pt;">
<span lang="EN-US" style="background-color: white; font-family: "helvetica"; font-size: 12pt;">On 20 <sup></sup>May 2012, I began D4Dementia with this simple introductory post: <a href="http://d4dementia.blogspot.com/2012/05/welcome-to-d-for-dementia.html" target="_blank">Welcome to D for Dementia</a>.<o:p></o:p></span></div>
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<span lang="EN-US" style="background-color: white; font-family: "helvetica"; font-size: 12pt;">Since then the blog has been read by thousands of people around the world, and I’ve had countless comments, requests for help and stories shared via email or social media. For every person who has ever read my blog, or taken the trouble to share it or comment on it, thank you. I appreciate all of your amazing support.<o:p></o:p></span></div>
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<span lang="EN-US" style="background-color: white; font-family: "helvetica"; font-size: 12pt;">In preparing for D4Dementia’s 7<sup>th </sup>birthday, it occurred to me that I'd never actually asked my readers what you think of the blog in an organized, analytical way. So I created and published a 5-question survey on 20 April 2019 to gather that feedback. <o:p></o:p></span></div>
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<span lang="EN-US" style="background-color: white; font-family: "helvetica"; font-size: 12pt;">Thank you to everyone who completed the survey. I’ve loved reading your responses and want to share some of the information I’ve gathered.<o:p></o:p></span></div>
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<span lang="EN-US" style="background-color: white; font-family: "helvetica"; font-size: 12pt;">Firstly, I asked how often you read my blog – almost every respondent said monthly, which is fantastic considering I publish a new blog monthly. Then I asked if you had a favourite post on D4Dementia. Most respondents didn’t, but those who added an optional comment pointed to posts including the following:<o:p></o:p></span></div>
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<span lang="EN-US" style="background-color: white; font-family: "helvetica"; font-size: 12pt;"><a href="http://d4dementia.blogspot.com/2017/05/five-things-i-wish-id-known-before-my.html" target="_blank">Five things I wish I’d known before my dad’s dementia</a></span></div>
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<span lang="EN-US" style="background-color: white; font-family: "helvetica"; font-size: 12pt;"><a href="http://d4dementia.blogspot.com/2012/07/the-sun-is-out.html" target="_blank">The sun is out</a></span></div>
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<span lang="EN-US" style="background-color: white; font-family: "helvetica"; font-size: 12pt;"><a href="http://d4dementia.blogspot.com/2019/04/experiences-of-loss.html" target="_blank">Experiences of loss</a> </span></div>
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<span lang="EN-US" style="background-color: white; font-family: "helvetica"; font-size: 12pt;"><a href="http://d4dementia.blogspot.com/2012/06/end-of-life-care-very-personal-story.html" target="_blank">End-of-life care: A very personal story</a></span></div>
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<span lang="EN-US" style="background-color: white; font-family: "helvetica"; font-size: 12pt;">Then I asked for your comments on D4Dementia. These are a selection:<o:p></o:p></span></div>
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<span lang="EN-US" style="background-color: white; font-family: "helvetica"; font-size: 12pt;">Question 4 asked what is most important to you in blog content. You can see the answers below, with 'P</span><span style="background-color: white; font-family: "helvetica"; font-size: 16px;">roviding practical solutions' and</span><span style="background-color: white; font-family: "helvetica"; font-size: 12pt;"> 'Drawing on personal experiences' as the most popular choices.</span></div>
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<span lang="EN-US" style="background-color: white; font-family: "helvetica"; font-size: 12pt;">Finally, my last question asked about topics you’d like me to cover in future blogs. Some of the suggestions that were made have already been put into my workplan, but to address two comments that I probably won’t be writing stand-alone blogs about:<o:p></o:p></span></div>
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<span lang="EN-US" style="background-color: white; font-family: "helvetica"; font-size: 12pt;"><i>"I'd like to know more about your work and impact in the sector."</i></span></div>
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<span lang="EN-US" style="background-color: white; font-family: "helvetica"; font-size: 12pt;">Please see <a href="https://www.bethbritton.com/" target="_blank">my website</a> for more information.</span></div>
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<span style="background-color: white; font-family: "helvetica"; font-size: 16px;"><i>"More about co-housing with students/young people."</i></span></div>
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<span style="background-color: white; font-family: "helvetica"; font-size: 16px;">I would suggest reading about the work of <a href="https://homeshareuk.org/" target="_blank">Homeshare</a> and <a href="https://sharedlivesplus.org.uk/" target="_blank">Shared Lives Plus</a>.</span></div>
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<span style="background-color: white; font-family: "helvetica"; font-size: 16px;">Huge thanks once again to everyone who reads my blog and everyone who contributed to the survey. I hope you continue to enjoy D4Dementia, and please do keep in touch with your comments, queries or questions.</span></div>
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<span style="background-color: white; font-family: "helvetica"; font-size: 16px;">Next up, my Dementia Action Week blog: '<a href="http://d4dementia.blogspot.com/2019/05/we-are-family-dementia-action-week-blog.html" target="_blank">We are family</a>'.</span></div>
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<span lang="EN-US"><span style="font-family: "open sans"; font-size: 13px;"><span style="font-family: "calibri";"></span></span><br style="font-family: "Open Sans"; font-size: 13px;" /><span style="font-family: "open sans"; font-size: 13px;"><span style="font-family: "calibri";"></span></span><br style="font-family: "Open Sans"; font-size: 13px;" /><br style="font-family: "Open Sans"; font-size: 13px;" /><span style="font-family: "helvetica neue";"><br /></span><span style="background-color: white; font-family: "open sans"; font-size: 13px;"></span><span style="font-family: "helvetica neue";">You can follow me on Twitter: <a href="https://twitter.com/bethyb1886" style="color: #b63846; text-decoration: none;" target="_blank">@bethyb1886</a></span><br style="font-family: "Open Sans"; font-size: 13px;" /><span style="font-family: "helvetica neue";"><a href="https://www.facebook.com/D4Dementia/" style="color: #b63846; text-decoration: none;" target="_blank">Like D4Dementia on Facebook</a></span></span></div>
Bethhttp://www.blogger.com/profile/09727279217918012517noreply@blogger.com0United Kingdom55.378051 -3.4359729999999912.203021 -86.05316049999999 90 79.18121450000001tag:blogger.com,1999:blog-3778521335346901337.post-50432249707867930952019-04-15T09:00:00.000+01:002019-04-18T16:37:41.196+01:00Experiences of loss<div class="MsoNormal" style="border: none; margin: 0cm 0cm 0.0001pt;">
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<span style="font-kerning: none;">With over 200 blogs on D4Dementia now, some of them approaching 7 years old next month, I've decided to spend my 2019 year of blogging by re-visiting some of the topics I’ve covered previously, throwing fresh light on why they remain relevant, and updating them with some of my more recent experiences. This month, I want to look at loss.</span></div>
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<span style="font-kerning: none;"><b>Losing my dad</b></span></div>
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<span style="font-kerning: none;">One of my most popular and shared blogs on D4Dementia is <a href="http://d4dementia.blogspot.com/2012/06/end-of-life-care-very-personal-story.html" target="_blank">‘End-of-life care: A very personal story’</a>. I wrote the blog less than two months after my dad had died, and with my emotions still very raw I began the blog by saying:</span></div>
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<span style="-webkit-font-kerning: none;"><span style="background-color: white;"><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><i>"Planting up my father’s grave recently, I found my mind wandering back to our last few days with him, painful in so many ways and yet hugely comforting as well. Nothing is more important to me than knowing that we spent all day every day with dad during that time, that we were with him at the very end, and that he had what I would describe as outstanding end-of-life care."</i></span></span></span></blockquote>
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<span style="font-kerning: none;">I’ve been back to plant up dad’s grave many times since I wrote that blog, most recently last week to give it some spring colour as we marked what would have been dad’s 92</span><span style="-webkit-font-kerning: none; font-size: 10.7px; font-stretch: normal; line-height: normal;"><sup>nd</sup></span><span style="font-kerning: none;"> birthday. That was the first time our daughter could really participate in the gardening, and my feelings watching her digging little holes and helping to arrange the plants are something I can’t quite find the words to describe. It’s the closest she will ever get to my dad, which is a huge sadness as I know my dad would have adored being a grandpa and he never got that chance. The emotions may not be as raw now, but dad’s physical absence from our lives means that there will always be a missing piece in our family jigsaw. </span></div>
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<span style="font-kerning: none;">Very sadly I’ve had further personal experience of loss recently as my <a href="https://www.huffingtonpost.co.uk/entry/no-ordinary-christmas_uk_5a27cad5e4b0cd6fb5ee8b84" target="_blank">father-in-law</a> passed away in South Africa, just 15 days before the 7th anniversary of my own dad’s passing and having lived and died from the same type of dementia – vascular dementia. Experiencing bereavement from a distance, having not been there to support my in-laws, as well as supporting my other half as he comes to terms with the loss of his dad, is the strangest mix of emotions, and the timing in particular has brought back many memories of my own dad’s passing. </span></div>
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<span style="font-kerning: none;">Distant bereavement means that you don’t have all of the practicalities to attend to, and you don’t feel remotely useful. Life is expected to carry on, and yet it isn’t the same and won’t ever be. Our parents shape our lives and the people we are – losing a figure so influential in your life is like having the rug pulled out from under you, and seven years on from losing my dad I have realised that you can never replace that carpet of stability and wisdom. All you can do is celebrate all that person gave you, and how they’ve helped you to become the individual you are.</span></div>
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<span style="font-kerning: none;">In my work life I draw on the strengths my dad gave me a huge amount, especially when dealing with any topic that involves loss. There is no denying the need to talk about advanced care planning, palliative and end of life care, loss, grief and bereavement, but while my personal experiences positively influence me as a trainer and writer they can also be painful to revisit in many different ways. </span></div>
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<span style="font-kerning: none;">One particular example of recent work, albeit ghost-written so I can’t signpost you to it as the author, was around how life story work can bring up thoughts and the associated feelings of bereavement(s) an older person experienced when they were younger. One of the most powerful ways I illustrated this was by drawing on the experiences of a lady I knew in her 80’s, who had heartbreakingly recalled a miscarriage as a young 20-something woman. </span></div>
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<span style="font-kerning: none;">At the time I never imagined this would resonate with me, but having had a miscarriage at 10 weeks last month I now know that an experience like that changes you. Other women older than me have told me they’ve never forgotten how they felt at the loss of the life they’d had growing inside them, and all I can really say is that in terms of pregnancy it reminded me of the title of a blog I wrote in 2014, ‘A loss of innocence’.</span></div>
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<span style="font-kerning: none;">A loss of innocence not because I didn’t know miscarriages can happen, indeed my own mother had one before having me and I know many other women who’ve had miscarriages amongst my circle of family and friends, but because I will never view pregnancy, should it ever happen for us again, in the same way. As I said in my <a href="http://d4dementia.blogspot.com/2014/04/a-loss-of-innocence.html" target="_blank">‘A loss of innocence’</a> blog:</span></div>
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<span style="-webkit-font-kerning: none;"><i><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">“Life is not and will never be as it was, and unlike many aspects of our existence this is something that we have no control over.”</span></i></span></blockquote>
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<span style="font-kerning: none;">For that lady in her 80’s recalling a loss of new life 60 years ago, as real then as the day it happened, is proof that living with loss is a lifetime’s work. Despite dementia taking many of this lady’s memories, it had left that one perfectly intact and able to torment her if the right care and support wasn't in place to help her overcome reliving those experiences whenever she saw a pregnant lady or a baby, having never been able to have children herself.</span></div>
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<span style="font-kerning: none;">I’ve come to realise that any loss changes you, and perhaps the most important message about loss is that you don’t forget, and that’s ok. You can’t erase loss from your life however it has touched you; all you can do is find ways to acknowledge your loss and to live with it.</span></div>
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<span style="font-family: "calibri";"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgsOI0iIn3PacRD2fega0JbUk0-IzyWXIPF6blh3Z-oyEiztOjQJXcVg53N4U502C4LdpzAgxKBQMJBttzEjtaiO0qopfMUQGw2KilN_JSbqu0tPpm-fzQvA2cumDnoaA7R4M4Qy6QFgERd/s1600/01signature.jpg" imageanchor="1" style="clear: left; color: #b63846; float: left; margin-bottom: 1em; margin-right: 1em; text-decoration: none;"><img alt="Beth x" border="0" height="98" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgsOI0iIn3PacRD2fega0JbUk0-IzyWXIPF6blh3Z-oyEiztOjQJXcVg53N4U502C4LdpzAgxKBQMJBttzEjtaiO0qopfMUQGw2KilN_JSbqu0tPpm-fzQvA2cumDnoaA7R4M4Qy6QFgERd/s200/01signature.jpg" style="-webkit-box-shadow: rgba(0, 0, 0, 0.2) 0px 0px 0px; border-bottom-left-radius: 0px; border-bottom-right-radius: 0px; border-top-left-radius: 0px; border-top-right-radius: 0px; border: 1px solid transparent; box-shadow: rgba(0, 0, 0, 0.2) 0px 0px 0px; padding: 8px; position: relative;" title="Beth x" width="200" /></a></span></div>
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<span lang="EN-US"><span style="font-family: "open sans"; font-size: 13px;"><span style="font-family: "calibri";"></span></span><br style="font-family: "Open Sans"; font-size: 13px;" /><span style="font-family: "open sans"; font-size: 13px;"><span style="font-family: "calibri";"></span></span><br style="font-family: "Open Sans"; font-size: 13px;" /><br style="font-family: "Open Sans"; font-size: 13px;" /><span style="font-family: "helvetica neue";"><br /></span><span style="background-color: white; font-family: "open sans"; font-size: 13px;"></span><span style="font-family: "helvetica neue";">You can follow me on Twitter: <a href="https://twitter.com/bethyb1886" style="color: #b63846; text-decoration: none;" target="_blank">@bethyb1886</a></span><br style="font-family: "Open Sans"; font-size: 13px;" /><span style="font-family: "helvetica neue";"><a href="https://www.facebook.com/D4Dementia/" style="color: #b63846; text-decoration: none;" target="_blank">Like D4Dementia on Facebook</a></span></span></div>
Bethhttp://www.blogger.com/profile/09727279217918012517noreply@blogger.com0United Kingdom55.378051 -3.4359729999999912.203021 -86.05316049999999 90 79.18121450000001tag:blogger.com,1999:blog-3778521335346901337.post-4608940434016789752019-03-11T09:00:00.001+00:002019-03-14T09:45:30.826+00:00Still hard to swallow<div class="Default" style="-webkit-text-size-adjust: auto; -webkit-text-stroke-width: 0px; border: none; caret-color: rgb(0, 0, 0); color: black; font-family: "Helvetica Neue"; font-size: 11pt; font-style: normal; font-variant-caps: normal; font-weight: normal; letter-spacing: normal; margin: 0cm 0cm 0.0001pt; orphans: auto; text-align: start; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; widows: auto; word-spacing: 0px;">
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<span lang="EN-US" style="background-color: white; background-position: initial initial; background-repeat: initial initial; font-size: 12pt;">With over 200 blogs on D4Dementia now, some of them approaching 7 years old in May this year, I've decided to spend my 2019 year of blogging by re-visiting some of the topics I’ve covered previously, throwing fresh light on why they remain relevant, and updating them with some of my more recent experiences. This month, I want to look at dysphagia (swallowing problems).</span><span lang="EN-US" style="background-color: white; background-position: initial initial; background-repeat: initial initial; font-size: 12pt;"><o:p></o:p></span></div>
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<span lang="EN-US" style="background-color: white; background-position: initial initial; background-repeat: initial initial; font-size: 12pt;">By a huge margin my most popular D4Dementia blog post is <a href="http://d4dementia.blogspot.com/2012/09/hard-to-swallow.html" target="_blank">‘Hard to swallow’</a>, which charts the four years that my dad lived with dysphagia alongside his vascular dementia. In that blog I explained dysphagia as follows:</span></div>
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<i><span lang="EN-US" style="background-color: white; background-position: initial initial; background-repeat: initial initial; font-size: 12pt;">"Something that is sadly very common in advanced dementia is the decline of the swallowing reflex. The condition, known as dysphagia, is extremely distressing for both the person affected and those caring for them, and can be fatal, either directly through choking or indirectly by setting up aspiration pneumonia.</span></i><span style="font-size: 11pt;"> </span></blockquote>
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<span lang="EN-US" style="background-color: white; background-position: initial initial; background-repeat: initial initial; font-size: 12pt;"><i>"The uncontrollable coughing that often accompanies a swallowing problem, indicating that something taken orally has gone into the trachea (windpipe) instead of the oesophagus, can leave the person affected gasping for breath, red-faced and sweating. For anyone who has witnessed someone choking, it is a terrifying moment."</i></span></blockquote>
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<span lang="EN-US" style="background-color: white; background-position: initial initial; background-repeat: initial initial; font-size: 12pt;">I wrote Hard to swallow in September 2012, less than 5 months after my dad had died from an aspiration pneumonia, so to say this is a topic close to my heart is an understatement. But it must also be remembered that with previous good support my dad lived reasonably well with dysphagia (and no teeth!), still enjoyed food and drinks and maintained mostly adequate levels of nutrition and hydration, so there is hope and positivity too. See <a href="https://www.nourishbyjaneclarke.com/blogs/latest-news/care-staff-didn-t-know-how-to-manage-my-dad-s-swallowing-problems" target="_blank">my interview with Nourish by Jane Clarke</a> for more insights into my dad's dysphagia.<o:p></o:p></span></div>
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<span lang="EN-US" style="background-color: white; background-position: initial initial; background-repeat: initial initial; font-size: 12pt;">In the years since dad died I have met numerous people who are living with dementia and dysphagia, and yet despite this swallowing problems are frequently the elephant in the room when thinking about the progression of dementia. Families often write to me, having read my Hard to swallow blog, saying that they simply had no idea that as their loved one’s dementia progressed they would develop swallowing problems.</span><span lang="EN-US" style="background-color: white; background-position: initial initial; background-repeat: initial initial; font-size: 12pt;"><o:p></o:p></span></div>
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<span lang="EN-US" style="background-color: white; background-position: initial initial; background-repeat: initial initial; font-size: 12pt;">As a result they feel unprepared, unsure of how to care for their loved one and, frankly, so frightened they worry about supporting their loved one to take anything orally, be that food, drinks </span><span style="background-color: white; font-size: 12pt;">or medication. Why we don’t talk about dysphagia more is a mystery to me - understanding how to support a person helps hugely in dispelling myths and calming fears. Dysphagia doesn’t have to be a watchword for unpalatable meals that look like vomit mush, or an undignified experience at every mealtime. As I said in my Hard to swallow blog: </span></div>
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<span lang="EN-US" style="background-color: white; background-position: initial initial; background-repeat: initial initial; font-size: 12pt;"><i>"Despite my father’s advanced dementia, the Speech and Language therapist was successful in assessing him when his swallowing problems were first identified… and gave us excellent advice that helped to give dad quality of life and give us confidence in caring for him."</i></span></blockquote>
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<span lang="EN-US" style="background-color: white; background-position: initial initial; background-repeat: initial initial; font-size: 12pt;">That professional support is key, but as is so often the way as services are cut and becoming overstretched <a href="https://twitter.com/suzysopenheart/status/1105036075364421632" target="_blank">it can be support that is very hard to come by</a>. Indeed, in some countries (I’ve had emails from around the world from families whose loved ones are living with dementia and dysphagia) such support doesn’t exist at all as someone who wrote to me from South America in 2016 explained:</span></div>
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<span lang="EN-US" style="background-color: white; background-position: initial initial; background-repeat: initial initial; font-size: 12pt;"><i>"Unfortunately we don't have speech therapists who can guide me on how to handle my dad’s dysphagia. I import liquid thickeners to adjust the consistency of his drinks."</i></span></blockquote>
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<span lang="EN-US" style="background-color: white; background-position: initial initial; background-repeat: initial initial; font-size: 12pt;">As if supporting a person with dysphagia isn’t daunting enough, to be in this position is intolerable. With such a lack of face-to-face professional support for many families, I hope that the tips and advice online - including those in my Hard to swallow blog - are helpful.</span><span lang="EN-US" style="background-color: white; background-position: initial initial; background-repeat: initial initial; font-size: 12pt;"><o:p></o:p></span></div>
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<span lang="EN-US" style="background-color: white; background-position: initial initial; background-repeat: initial initial; font-size: 12pt;">In the years since my dad died, my training and mentoring with care providers has enabled me to understand additional methods for supporting a person with dementia and dysphagia that go beyond those documented in my 2012 blog, and I wanted to share some of those here:</span></div>
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<!--[if !supportLists]--><span lang="EN-US" style="font-size: 12.0pt; mso-ascii-font-family: "Helvetica Neue"; mso-ascii-theme-font: minor-latin; mso-hansi-font-family: "Arial Unicode MS"; mso-text-raise: -1.0pt; position: relative; top: 1.0pt;"><span style="mso-list: Ignore;">•<span style="font: 7.0pt "Times New Roman";"> </span></span></span><!--[endif]--><span lang="EN-US" style="background-color: white; background-position: initial initial; background-repeat: initial initial; font-size: 12pt;">Straws can cause problems - Liquid drawn through a straw can often hit a person’s mouth faster than that taken without a straw, making straws potentially dangerous for some people with dysphagia. <o:p></o:p></span></div>
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<!--[if !supportLists]--><span lang="EN-US" style="font-size: 12.0pt; mso-ascii-font-family: "Helvetica Neue"; mso-ascii-theme-font: minor-latin; mso-hansi-font-family: "Arial Unicode MS"; mso-text-raise: -1.0pt; position: relative; top: 1.0pt;"><span style="mso-list: Ignore;">•<span style="font: 7.0pt "Times New Roman";"> </span></span></span><!--[endif]--><span lang="EN-US" style="background-color: white; background-position: initial initial; background-repeat: initial initial; font-size: 12pt;">Be especially patient in helping the person to drink - Thickened drinks take many people with dysphagia longer than you might imagine to consume, and most thickeners also make drinks more filling. Therefore little and often is a really important motto for helping to keep a person with dysphagia hydrated.<o:p></o:p></span></div>
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<!--[if !supportLists]--><span lang="EN-US" style="font-size: 12.0pt; mso-ascii-font-family: "Helvetica Neue"; mso-ascii-theme-font: minor-latin; mso-hansi-font-family: "Arial Unicode MS"; mso-text-raise: -1.0pt; position: relative; top: 1.0pt;"><span style="mso-list: Ignore;">•<span style="font: 7.0pt "Times New Roman";"> </span></span></span><!--[endif]--><span lang="EN-US" style="background-color: white; background-position: initial initial; background-repeat: initial initial; font-size: 12pt;">Equally, for many people with dysphagia meals are often best provided little and often - The effort required to process food in the mouth and swallow it for a person with dysphagia is immense, far greater than for a person without dysphagia. So the idea of three set meals a day and those meals filling the person up isn’t a sensible approach. Try smaller portions, that the person can eat at their own pace in shorter periods of time, and follow up with further small portions throughout the day at times when the person is alert and correctly positioned upright to eat and drink.<o:p></o:p></span></div>
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<!--[if !supportLists]--><span lang="EN-US" style="font-size: 12.0pt; mso-ascii-font-family: "Helvetica Neue"; mso-ascii-theme-font: minor-latin; mso-hansi-font-family: "Arial Unicode MS"; mso-text-raise: -1.0pt; position: relative; top: 1.0pt;"><span style="mso-list: Ignore;">•<span style="font: 7.0pt "Times New Roman";"> </span></span></span><!--[endif]--><span lang="EN-US" style="background-color: white; background-position: initial initial; background-repeat: initial initial; font-size: 12pt;">Try using teaspoons to support a person to eat - This will naturally make each mouthful a smaller amount than larger cutlery will provide.<o:p></o:p></span></div>
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<!--[if !supportLists]--><span lang="EN-US" style="font-size: 12.0pt; mso-ascii-font-family: "Helvetica Neue"; mso-ascii-theme-font: minor-latin; mso-hansi-font-family: "Arial Unicode MS"; mso-text-raise: -1.0pt; position: relative; top: 1.0pt;"><span style="mso-list: Ignore;">•<span style="font: 7.0pt "Times New Roman";"> </span></span></span><!--[endif]--><span lang="EN-US" style="background-color: white; background-position: initial initial; background-repeat: initial initial; font-size: 12pt;">If the person you are supporting doesn’t like the taste of thickeners (and despite what the manufacturers say, thickeners do change the taste of foods and drinks), natural alternatives I’ve seen that are popular (though never tried with my dad) include smooth-mashed avocado, smooth peanut butter (providing the person isn’t allergic to nuts), thick Greek yogurt or kefir (if the person can tolerate dairy products), smooth-mashed banana and smooth-mashed or pulverised cannellini beans. Obviously the choice you make depends on whether you are trying to thicken a savoury or sweet food or beverage, and if that food or drink is being served hot or cold.<o:p></o:p></span></div>
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<!--[if !supportLists]--><span lang="EN-US" style="font-size: 12.0pt; mso-ascii-font-family: "Helvetica Neue"; mso-ascii-theme-font: minor-latin; mso-hansi-font-family: "Arial Unicode MS"; mso-text-raise: -1.0pt; position: relative; top: 1.0pt;"><span style="mso-list: Ignore;">•<span style="font: 7.0pt "Times New Roman";"> </span></span></span><!--[endif]--><span lang="EN-US" style="background-color: white; background-position: initial initial; background-repeat: initial initial; font-size: 12pt;">Some people have said to me that making foods or drinks sour, for example by adding lemon juice, helps to trigger the swallowing reflex.<o:p></o:p></span></div>
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<!--[if !supportLists]--><span lang="EN-US" style="font-size: 12.0pt; mso-ascii-font-family: "Helvetica Neue"; mso-ascii-theme-font: minor-latin; mso-hansi-font-family: "Arial Unicode MS"; mso-text-raise: -1.0pt; position: relative; top: 1.0pt;"><span style="mso-list: Ignore;">•<span style="font: 7.0pt "Times New Roman";"> </span></span></span><!--[endif]--><span lang="EN-US" style="background-color: white; background-position: initial initial; background-repeat: initial initial; font-size: 12pt;">Don’t eat too close to bedtime - Ideally allow 2+ hours after eating before going to bed.<o:p></o:p></span></div>
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<span lang="EN-US" style="background-color: white; background-position: initial initial; background-repeat: initial initial; font-size: 12pt;">For more information on nutrition and hydration, see my blogs <a href="http://d4dementia.blogspot.com/2013/05/hydrated-and-happy.html" target="_blank">‘Hydrated and Happy’</a>, </span><span style="background-color: white; font-size: 12pt;"><a href="http://d4dementia.blogspot.com/2012/05/food-for-thought.html" target="_blank">‘Food for thought’</a> and <a href="http://d4dementia.blogspot.com/2014/03/the-digestive-balance.html" target="_blank">‘The digestive balance’</a>.</span></div>
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<span lang="EN-US">Until next time...</span></div>
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<span lang="EN-US"><span style="font-family: "open sans"; font-size: 13px;"><span style="font-family: "calibri";"></span></span><br style="font-family: "Open Sans"; font-size: 13px;" /><span style="font-family: "open sans"; font-size: 13px;"><span style="font-family: "calibri";"></span></span><br style="font-family: "Open Sans"; font-size: 13px;" /><br style="font-family: "Open Sans"; font-size: 13px;" /><span style="font-family: "helvetica neue";"><br /></span><span style="background-color: white; font-family: "open sans"; font-size: 13px;"></span><span style="font-family: "helvetica neue";">You can follow me on Twitter: <a href="https://twitter.com/bethyb1886" style="color: #b63846; text-decoration: none;" target="_blank">@bethyb1886</a></span><br style="font-family: "Open Sans"; font-size: 13px;" /><span style="font-family: "helvetica neue";"><a href="https://www.facebook.com/D4Dementia/" style="color: #b63846; text-decoration: none;" target="_blank">Like D4Dementia on Facebook</a></span></span></div>
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</style>Bethhttp://www.blogger.com/profile/09727279217918012517noreply@blogger.com0United Kingdom55.378051 -3.4359729999999912.203021 -86.05316049999999 90 79.18121450000001tag:blogger.com,1999:blog-3778521335346901337.post-43575402099162803472019-02-11T09:00:00.000+00:002019-02-11T15:05:15.756+00:00Finding love again<div class="Default" style="border: none; font-family: "Helvetica Neue"; font-size: 11pt; margin: 0cm 0cm 0.0001pt;">
<span lang="EN-US" style="background-color: white; background-position: initial initial; background-repeat: initial initial; font-size: 12pt;">With over 200 blogs on D4Dementia now, some of them approaching 7 years old in May this year, I've decided to spend my 2019 year of blogging by re-visiting some of the topics I’ve covered previously, throwing fresh light on why they remain relevant, and updating them with some of my more recent experiences. This month, I want to look at love.</span><span lang="EN-US" style="background-color: white; background-position: initial initial; background-repeat: initial initial; font-size: 12pt;"><o:p></o:p></span></div>
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<span lang="EN-US" style="background-color: white; background-position: initial initial; background-repeat: initial initial; font-size: 12pt;">I finished my <a href="http://d4dementia.blogspot.com/2019/01/communication-its-more-than-just-words.html" target="_blank">January 2019 blog</a> with a quote that talked about how a person who is struggling to express themselves, perhaps because of their dementia, is:</span></div>
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<span lang="EN-US" style="background-color: white; background-position: initial initial; background-repeat: initial initial; font-size: 12pt;"><i>“Ultimately looking for understanding, appreciation and love.”</i></span></blockquote>
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<span lang="EN-US" style="background-color: white; background-position: initial initial; background-repeat: initial initial; font-size: 12pt;">Of course that could be said for all of us regardless of the circumstances surrounding our health, but a diagnosis of dementia brings the importance of love and expressing love into an even sharper focus, as I described in my 2014 blog, ‘<a href="http://d4dementia.blogspot.com/2014/03/amour.html" target="_blank">Amour’</a></span><span lang="EN-US" style="background-color: white; background-position: initial initial; background-repeat: initial initial; font-size: 12pt;">:</span></div>
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<i><span lang="EN-US" style="background-color: white; background-position: initial initial; background-repeat: initial initial; font-size: 12pt;">“Dementia taught me to tell my dad I loved him every time I saw him. I say dementia taught me because a diagnosis of a terminal disease makes it imperative that you make the most of every moment. There isn't time to be bashful - you will have a long time to regret what you didn't have the courage to say or do.”</span></i></blockquote>
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<span lang="EN-US" style="background-color: white; background-position: initial initial; background-repeat: initial initial; font-size: 12pt;">But that isn’t to say it’s always easy to express love or feel love when dementia is part of life. Last year I met a lady who very candidly spoke about her relationship with her mother, who is living with dementia, saying that she found it very hard to love her mother now.</span><span lang="EN-US" style="background-color: white; background-position: initial initial; background-repeat: initial initial; font-size: 12pt;"><o:p></o:p></span></div>
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<span lang="EN-US" style="background-color: white; background-position: initial initial; background-repeat: initial initial; font-size: 12pt;">Many people might harshly judge this lady for a comment like that, but on further exploration it was clear it was a remark that came from a place of immense love and a longing for that love to be reciprocated. The lady felt bereft because of her perception that her mother didn’t love her, but when we reflected on her time with her mother, it became clear that she was missing very subtle signs of her mother’s love, purely because they weren’t the obvious expressions of it that she’d been used to her whole life.</span><span lang="EN-US" style="background-color: white; background-position: initial initial; background-repeat: initial initial; font-size: 12pt;"><o:p></o:p></span></div>
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<span lang="EN-US" style="background-color: white; background-position: initial initial; background-repeat: initial initial; font-size: 12pt;">This lady viewed the changes in her mother only through a negative lens. She spoke about her mother’s repetitive speech, her lack of interest in previous hobbies, how she no longer wanted to eat foods she’d always enjoyed and how she constantly walked, making her daughter feel that she just wanted to get away from her.</span><span lang="EN-US" style="background-color: white; background-position: initial initial; background-repeat: initial initial; font-size: 12pt;"><o:p></o:p></span></div>
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<span lang="EN-US" style="background-color: white; background-position: initial initial; background-repeat: initial initial; font-size: 12pt;">But we found a flip side to this. The repetitive speech was an opportunity for the lady to reinforce the information her mother needed, and that could come from a place of love if she realised the trust her mother was placing in her to provide that information in a calm and consistent way.</span><span lang="EN-US" style="background-color: white; background-position: initial initial; background-repeat: initial initial; font-size: 12pt;"><o:p></o:p></span></div>
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<span lang="EN-US" style="background-color: white; background-position: initial initial; background-repeat: initial initial; font-size: 12pt;">The lack of enthusiasm for previous hobbies could be interpreted as an opportunity to try new things, finding common interests that they could enjoy together, and likewise with trying new foods. We also talked about walking, and the joy that could be found in walking together, exploring the environment and taking notice of the details around them, something that is known to be very good for improving wellbeing</span><span style="background-color: white; font-size: 12pt;">.</span></div>
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<span lang="EN-US" style="background-color: white; background-position: initial initial; background-repeat: initial initial; font-size: 12pt;">Like many people, this daughter saw her mother’s walking through the negative concept of wandering (not a phrase I like or agree with), which is a topic I wrote about in my 2012 blog <a href="http://d4dementia.blogspot.com/2012/11/going-places.html" target="_blank">‘Going Places’</a></span><span style="background-color: white; font-size: 12pt;">:</span></div>
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<i><span lang="EN-US" style="background-color: white; background-position: initial initial; background-repeat: initial initial; font-size: 12pt;">“Wandering suggests aimless moving from place to place without any clear objective, but that is not the case in people with dementia. </span><span class="Hyperlink1" style="color: #b63846;"><span lang="EN-US" style="background-color: white; color: black; font-size: 12pt;">I have written previously about the need to appreciate, understand and connect with a person who has dementia within the world THEY are living in</span></span><span lang="EN-US" style="background-color: white; font-size: 12pt;">. It may be a world from their </span><span lang="EN-US" style="background-color: white; background-position: initial initial; background-repeat: initial initial; font-size: 12pt;">childhood or their years as a youthful adult, it may be a happy place or a sad and worrying place. Wherever it is and whatever the circumstances, the person with dementia may well feel compelled to do certain things, and have great purpose and direction in doing them, however fleeting that may be.”</span></i><span style="background-color: white; font-family: "helvetica neue"; font-size: 12pt;"> </span></blockquote>
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<span lang="EN-US" style="background-color: white; background-position: initial initial; background-repeat: initial initial; font-size: 12pt;">For this lady’s mother, walking was something she needed and wanted to do, not something to be in any way suppressed as her daughter thought it perhaps should be. Supporting someone you love to do something that they love is in itself an act of love. Not one with big declarations or fancy ribbons attached, but one that is far more meaningful when you consider that many people who are living with dementia and want to do things like walking are prevented, sometimes forcibly, from doing so.<o:p></o:p></span></div>
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<span lang="EN-US" style="background-color: white; background-position: initial initial; background-repeat: initial initial; font-size: 12pt;">I think, and hope, that I helped this lady to find a different perspective to the one of desolation and isolation that she was feeling. Accepting that dementia sometimes changes our perception of loving and being loved is a tough realisation, but it is one that provides a degree of peace, and sometimes even hope – hope that you can still have those moments of connection with the person you love, however fleeting those moments may be, and feel that surge of emotion that only love can give you.</span></div>
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<span lang="EN-US" style="background-color: white; background-position: initial initial; background-repeat: initial initial; font-size: 12pt;">As I said in my Amour blog:</span><br />
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<span lang="EN-US" style="background-color: white; background-position: initial initial; background-repeat: initial initial; font-size: 12pt;"><i>“During those difficult moments, the sadness, the emptiness, the emotional rollercoaster of being a carer, it's the love you feel that gets you through.”</i></span></blockquote>
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<span lang="EN-US">Until next time...</span></div>
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<span style="font-family: "calibri";"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgsOI0iIn3PacRD2fega0JbUk0-IzyWXIPF6blh3Z-oyEiztOjQJXcVg53N4U502C4LdpzAgxKBQMJBttzEjtaiO0qopfMUQGw2KilN_JSbqu0tPpm-fzQvA2cumDnoaA7R4M4Qy6QFgERd/s1600/01signature.jpg" imageanchor="1" style="clear: left; color: #b63846; float: left; margin-bottom: 1em; margin-right: 1em; text-decoration: none;"><img alt="Beth x" border="0" height="98" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgsOI0iIn3PacRD2fega0JbUk0-IzyWXIPF6blh3Z-oyEiztOjQJXcVg53N4U502C4LdpzAgxKBQMJBttzEjtaiO0qopfMUQGw2KilN_JSbqu0tPpm-fzQvA2cumDnoaA7R4M4Qy6QFgERd/s200/01signature.jpg" style="-webkit-box-shadow: rgba(0, 0, 0, 0.2) 0px 0px 0px; border-bottom-left-radius: 0px; border-bottom-right-radius: 0px; border-top-left-radius: 0px; border-top-right-radius: 0px; border: 1px solid transparent; box-shadow: rgba(0, 0, 0, 0.2) 0px 0px 0px; padding: 8px; position: relative;" title="Beth x" width="200" /></a></span></div>
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<span lang="EN-US"><span style="font-family: "open sans"; font-size: 13px;"><span style="font-family: "calibri";"></span></span><br style="font-family: "Open Sans"; font-size: 13px;" /><span style="font-family: "open sans"; font-size: 13px;"><span style="font-family: "calibri";"></span></span><br style="font-family: "Open Sans"; font-size: 13px;" /><br style="font-family: "Open Sans"; font-size: 13px;" /><span style="font-family: "helvetica neue";"><br /></span><span style="background-color: white; font-family: "open sans"; font-size: 13px;"></span><span style="font-family: "helvetica neue";">You can follow me on Twitter: <a href="https://twitter.com/bethyb1886" style="color: #b63846; text-decoration: none;" target="_blank">@bethyb1886</a></span><br style="font-family: "Open Sans"; font-size: 13px;" /><span style="font-family: "helvetica neue";"><a href="https://www.facebook.com/D4Dementia/" style="color: #b63846; text-decoration: none;" target="_blank">Like D4Dementia on Facebook</a></span></span></div>
Bethhttp://www.blogger.com/profile/09727279217918012517noreply@blogger.com0tag:blogger.com,1999:blog-3778521335346901337.post-30398740718259264372019-01-14T09:00:00.000+00:002019-01-14T09:22:18.320+00:00Communication - It’s more than just words<div class="Default" style="border: none; font-family: "Helvetica Neue"; font-size: 11pt; margin: 0cm 0cm 0.0001pt;">
<span lang="EN-US" style="background-color: white; background-position: initial initial; background-repeat: initial initial; font-size: 12pt;">With over 200 blogs on D4Dementia now, some of them approaching 7 years old in May this year, I've decided to spend my 2019 year of blogging by re-visiting some of the topics I’ve covered previously, throwing fresh light on why they remain relevant, and updating them with some of my more recent experiences. To begin, I want to look at communication.</span><span lang="EN-US" style="background-color: white; background-position: initial initial; background-repeat: initial initial; font-size: 12pt;"><o:p></o:p></span></div>
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<span lang="EN-US" style="background-color: white; background-position: initial initial; background-repeat: initial initial; font-size: 12pt;">In 2013 I wrote a very popular blog entitled, <a href="http://d4dementia.blogspot.com/2013/01/dont-ignore-me.html" target="_blank">‘Don’t ignore me.’</a> I</span><span lang="EN-US" style="background-color: white; background-position: initial initial; background-repeat: initial initial; font-size: 12pt;">t was all about how a person with dementia might express themselves, highlighting that;</span></div>
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<span lang="EN-US" style="background-color: white; background-position: initial initial; background-repeat: initial initial; font-size: 12pt;"><i>“Speech is only one form of communication; assessing body language, the choices being made, positive or negative reactions and different behaviours can often tell us a great deal without a single word being uttered.”</i></span></blockquote>
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<span lang="EN-US" style="background-color: white; background-position: initial initial; background-repeat: initial initial; font-size: 12pt;">It was a blog I wrote mostly to share how my dad communicated, particularly in the latter years of his dementia, in the hope it might help others to understand that a lack of verbal communication isn’t, as many of us might assume, the end of communication.</span><span lang="EN-US" style="background-color: white; background-position: initial initial; background-repeat: initial initial; font-size: 12pt;"><o:p></o:p></span></div>
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<span lang="EN-US" style="background-color: white; background-position: initial initial; background-repeat: initial initial; font-size: 12pt;">Losing the ability to verbally communicate is something I see often in people whose dementia has significantly advanced. Sadly those people are still being far too quickly and easily written off, as I described in my ‘Don’t ignore me’ blog where I wrote about that hideous phrase ‘unresponsive’:</span></div>
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<span lang="EN-US" style="background-color: white; background-position: initial initial; background-repeat: initial initial; font-size: 12pt;"><i>“A popular phrase to describe someone with advanced dementia is ‘unresponsive’. In my view it is a description that says more about the abilities of the person using it than the person with dementia. No one is ever 'unresponsive'. You may have to work a bit harder to find something that creates a reaction, but even someone with very advanced dementia is capable of expressing themselves in their own unique way if they are stimulated to do that, and the person enabling that stimulation then has the ability to interpret the resulting expression.”</i></span></blockquote>
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<span lang="EN-US" style="background-color: white; background-position: initial initial; background-repeat: initial initial; font-size: 12pt;">You might imagine that in 2019 the phrase ‘unresponsive’ to describe the communication of a person with dementia would be obsolete, but not so. I saw it written in more than one care plan in the latter part of 2018, and promptly sought to change the perceptions of the people who’d written those plans.</span><span lang="EN-US" style="background-color: white; background-position: initial initial; background-repeat: initial initial; font-size: 12pt;"><o:p></o:p></span></div>
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<span lang="EN-US" style="background-color: white; background-position: initial initial; background-repeat: initial initial; font-size: 12pt;">On the flip side, also in the latter part of 2018 I saw some truly inspirational communication with a gentleman called Peter*, who is in his 50's and has been speech-impaired for most of his life. Peter's family, rather than finding this difficult describe it as a blessing. Why? Because his siblings say it meant that they grew up learning to communicate in multiple different ways, rather than relying on speech as most of us do.</span><span lang="EN-US" style="background-color: white; background-position: initial initial; background-repeat: initial initial; font-size: 12pt;"><o:p></o:p></span></div>
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<span lang="EN-US" style="background-color: white; background-position: initial initial; background-repeat: initial initial; font-size: 12pt;">Peter's family have developed, as a unit, a communication system highly personal to them, that combines elements of sign language, body language, facial expressions, body movements, objects and pictures. They emphasise that rather than just using their mouths, they and Peter use their whole body to communicate. So for example, flexing his toes means that Peter needs to move. In order to observe this if Peter is wearing socks, his family bought him toe socks.</span></div>
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<span lang="EN-US" style="background-color: white; background-position: initial initial; background-repeat: initial initial; font-size: 12pt;">While I was with Peter and his family I also saw something I rarely see in mainstream dementia services – mirroring. This is where those communicating with the person mirror their non-verbal signals, enabling the person to feel that those around them have a real rapport and connection with them and share their emotions and ideas, giving the person a greater sense of engagement and belonging. True mirroring is subconscious, and is very different from imitation, which is a conscious effort to copy a person that can be very disrespectful.<o:p></o:p></span></div>
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<span lang="EN-US" style="background-color: white; background-position: initial initial; background-repeat: initial initial; font-size: 12pt;">It was fascinating to watch Peter and his siblings communicating, proving that a lack of speech is no barrier to a deep and loving connection that hopefully ensures that Peter feels understood, valued and never, ever ignored. </span><span lang="EN-US" style="background-color: white; background-position: initial initial; background-repeat: initial initial; font-size: 12pt;"></span><span lang="EN-US" style="background-color: white; background-position: initial initial; background-repeat: initial initial; font-size: 12pt;">Granted, Peter and his family have had years to adapt and refine how they communicate with each other, and listening to their story it certainly hasn’t been easy, but the message I took away from meeting them was that no matter how difficult the circumstances, if you are creative in your approach, focused on what is possible (rather than dwelling on what isn’t), and prepared to adapt and change, you will find those moments of connection that may have seemed illusive. </span><span lang="EN-US" style="background-color: white; background-position: initial initial; background-repeat: initial initial; font-size: 12pt;"><o:p></o:p></span></div>
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<span lang="EN-US" style="background-color: white; background-position: initial initial; background-repeat: initial initial; font-size: 12pt;">Of course when you’re thinking about supporting a loved one with dementia, or as a professional working in dementia care and support, the greatest difficulty is often that dementia is a bit like shifting sands - as fast as you find a breakthrough, something changes and you need to re-evaluate and try something new. Rapid change isn’t something Peter's family have had to cope with as yet, but we certainly had that with my dad.</span><span lang="EN-US" style="background-color: white; background-position: initial initial; background-repeat: initial initial; font-size: 12pt;"><o:p></o:p></span></div>
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<span lang="EN-US" style="background-color: white; background-position: initial initial; background-repeat: initial initial; font-size: 12pt;">So, what does all this mean for someone currently supporting a person, with or without dementia, for whom verbal communication is now limited or non-existent. For me, the best first step is observation. The time you might otherwise spend thinking of what you want to say, saying it and trying, perhaps in vain, to be understood needs instead to be spent observing the person. <o:p></o:p></span></div>
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<span lang="EN-US" style="background-color: white; background-position: initial initial; background-repeat: initial initial; font-size: 12pt;">Never starring, just discreet observation, taking in everything about the person, what they are doing with their body (or not doing that is otherwise usual for them) and what they are telling you through those movements, perhaps wanting something or someone, indicating that something is wrong (or right, don’t miss the positive things too) or giving non-verbal clues that something is missing. Think of this like an unfinished sentence - how can you help the person finish what they are trying to communicate? You might need props like objects or pictures to assist you. </span><span lang="EN-US" style="background-color: white; background-position: initial initial; background-repeat: initial initial; font-size: 12pt;"><o:p></o:p></span></div>
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<span lang="EN-US" style="background-color: white; background-position: initial initial; background-repeat: initial initial; font-size: 12pt;">Good observation won't just enhance your communication, it has many other benefits too as I wrote about in my 2015 blog, <a href="http://d4dementia.blogspot.com/2015/12/harnessing-power-of-observation.html" target="_blank">‘Harnessing the power of observation’</a></span><span lang="EN-US" style="background-color: white; background-position: initial initial; background-repeat: initial initial; font-size: 12pt;">:</span></div>
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<span style="background-color: white; font-size: 16px;"><i>“Good observation skills can tell you how a person is feeling, what they want or need and how you can best respond to them. It can also give you clues to their personality, their likes and dislikes, and the ways in which you can seamlessly integrate yourself into their life without being obtrusive, interfering and controlling.”</i></span></blockquote>
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<span lang="EN-US" style="background-color: white; background-position: initial initial; background-repeat: initial initial; font-size: 12pt;">Even for the best observers, taking in this level of detail undoubtedly takes practice - be prepared for a lot of trial and error, a lot of frustration for you and the person, and going down many blind alleys with what you think is meant but really isn’t at all. But for all the difficulties, it is worth it for those special moments where you do both understand each other. As I said in my ‘Don’t ignore me’ blog:</span></div>
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<span lang="EN-US" style="background-color: white; background-position: initial initial; background-repeat: initial initial; font-size: 12pt;"><i>“It can be easy to ignore an expression that isn’t clearly spoken, but the price paid can be huge in terms of emotional, physical and mental distress to someone who is already vulnerable, often frustrated, and ultimately looking for understanding, appreciation and love.”</i></span></blockquote>
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<span lang="EN-US">Until next time...</span></div>
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<span style="font-family: "calibri";"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgsOI0iIn3PacRD2fega0JbUk0-IzyWXIPF6blh3Z-oyEiztOjQJXcVg53N4U502C4LdpzAgxKBQMJBttzEjtaiO0qopfMUQGw2KilN_JSbqu0tPpm-fzQvA2cumDnoaA7R4M4Qy6QFgERd/s1600/01signature.jpg" imageanchor="1" style="clear: left; color: #b63846; float: left; margin-bottom: 1em; margin-right: 1em; text-decoration: none;"><img alt="Beth x" border="0" height="98" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgsOI0iIn3PacRD2fega0JbUk0-IzyWXIPF6blh3Z-oyEiztOjQJXcVg53N4U502C4LdpzAgxKBQMJBttzEjtaiO0qopfMUQGw2KilN_JSbqu0tPpm-fzQvA2cumDnoaA7R4M4Qy6QFgERd/s200/01signature.jpg" style="-webkit-box-shadow: rgba(0, 0, 0, 0.2) 0px 0px 0px; border-bottom-left-radius: 0px; border-bottom-right-radius: 0px; border-top-left-radius: 0px; border-top-right-radius: 0px; border: 1px solid transparent; box-shadow: rgba(0, 0, 0, 0.2) 0px 0px 0px; padding: 8px; position: relative;" title="Beth x" width="200" /></a></span></div>
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<span lang="EN-US"><span style="font-family: "open sans"; font-size: 13px;"><span style="font-family: "calibri";"></span></span><br style="font-family: "Open Sans"; font-size: 13px;" /><span style="font-family: "open sans"; font-size: 13px;"><span style="font-family: "calibri";"></span></span><br style="font-family: "Open Sans"; font-size: 13px;" /><br style="font-family: "Open Sans"; font-size: 13px;" /><span style="font-family: "helvetica neue";"><br /></span><span style="background-color: white; font-family: "open sans"; font-size: 13px;"></span><span style="font-family: "helvetica neue";">You can follow me on Twitter: <a href="https://twitter.com/bethyb1886" style="color: #b63846; text-decoration: none;" target="_blank">@bethyb1886</a></span><br style="font-family: "Open Sans"; font-size: 13px;" /><span style="font-family: "helvetica neue";"><a href="https://www.facebook.com/D4Dementia/" style="color: #b63846; text-decoration: none;" target="_blank">Like D4Dementia on Facebook</a></span></span></div>
Bethhttp://www.blogger.com/profile/09727279217918012517noreply@blogger.com0United Kingdom55.378051 -3.4359729999999912.203021 -86.05316049999999 90 79.18121450000001tag:blogger.com,1999:blog-3778521335346901337.post-44953587806419698622018-12-17T09:00:00.000+00:002018-12-22T12:57:48.423+00:00Resolve to tackle loneliness<div class="Default" style="border: none; font-family: "Helvetica Neue"; font-size: 11pt; margin: 0cm 0cm 0.0001pt; text-align: center;">
<span lang="EN-US" style="background-color: white; font-size: 12pt;">“It’ll be lonely this Christmas</span><span lang="EN-US" style="background-color: white; font-size: 12pt;"><o:p></o:p></span></div>
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<span lang="EN-US" style="background-color: white; font-size: 12pt;">It'll be lonely this Christmas</span><span lang="EN-US" style="background-color: white; font-size: 12pt;"><o:p></o:p></span></div>
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<span lang="EN-US" style="background-color: white; font-size: 12pt;">Lonely and cold.”</span><span lang="EN-US" style="background-color: white; font-size: 12pt;"><o:p></o:p></span></div>
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<span lang="EN-US" style="background-color: white; font-size: 12pt;">So <a href="https://youtu.be/NJ6kJ7GWtv0" target="_blank">sang English glam rock band Mud (in the style of Elvis Presley)</a> to top the UK singles chart in 1974, selling over 750,000 copies and reaching Christmas number one.</span><span lang="EN-US" style="background-color: white; font-size: 12pt;"><o:p></o:p></span></div>
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<span lang="EN-US" style="background-color: white; font-size: 12pt;">44 years later, and as this song joins the throngs of Christmas music on the airwaves for another year, I’ve found myself wondering if we might ever reduce the estimated 9 million+ people in the UK who are said to be ‘always or often lonely’ to closer to the number of copies this song sold back in 1974. If we could, that would mean 8,250,000 less lonely people.</span><span lang="EN-US" style="background-color: white; font-size: 12pt;"><o:p></o:p></span></div>
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<span lang="EN-US" style="background-color: white; font-size: 12pt;">The 9 million+ statistic came from <a href="https://www.redcross.org.uk/about-us/what-we-do/action-on-loneliness" target="_blank">research by The British Red Cross</a> earlier this year. They described the figure as representing ‘epidemic levels of loneliness and social isolation’, and few could argue with that assessment. It’s a hugely negative reflection on our modern-day society, and ironically comes in an age where we’ve never had so much connectivity through technology and yet so many of us feel more isolated than ever before.<o:p></o:p></span></div>
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<span lang="EN-US" style="background-color: white; font-size: 12pt;">The reasons for loneliness in the UK are many and varied, with commentators sighting everything from social media use to poor work-life cultures. I personally feel that the English 'stiff upper lip' culture also plays a role - not wanting to admit you feel lonely or isolated, fear of being rejected if you do seek help or support or even just reach out to someone you know who may themselves be too caught up in life to respond to you in the way you hope they might, and feeling compelled to hold all of your feelings and worries within you.</span></div>
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<span lang="EN-US" style="background-color: white; font-size: 12pt;">Amongst those most vulnerable to isolation and loneliness are older people, those living with long-term health conditions, including dementia, and those who provide care and support for a loved one. The very nature of ageing means you lose friends and family as your peers pass away, and of course living with dementia can pose such significant challenges with social interaction that many people would rather avoid it, particularly if they haven't managed to connect with like-minded individuals through peer support (examples of peer-support groups for people with dementia include <a href="https://www.dementiavoices.org.uk/" target="_blank">DEEP</a> and <a href="https://www.dementiaallianceinternational.org/" target="_blank">DAI</a>).</span></div>
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<span lang="EN-US" style="background-color: white; font-size: 12pt;">Indeed, such is the risk of isolation and loneliness for people with dementia that the Dementia Action Alliance 'Dementia Statements' <a href="https://www.huffingtonpost.co.uk/beth-britton/making-a-statement-about-_b_17796398.html" target="_blank">(that I wrote about in August 2017)</a> specifically say, "We have the right to continue with day-to-day and family life, without discrimination or unfair cost, to be accepted and included in our communities and not live in isolation or loneliness."</span><span style="background-color: white;"> </span></div>
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<span lang="EN-US" style="background-color: white; font-size: 12pt;">It’s also worth remembering that social isolation is thought to increase a person’s risk of developing dementia, hence why the importance of social interaction is highlighted as a potential preventative measure. With this in mind, in <a href="https://bethbritton.com/consultant/training-mentoring/" target="_blank">my training for care providers</a> I talk to social care staff about the dangers of isolation and loneliness amongst the people they support and we discuss ways this can be combatted.<o:p></o:p></span></div>
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<span lang="EN-US" style="background-color: white; font-size: 12pt;">While staff who provide support to people in their own homes are often much more aware of the risks posed by isolation and loneliness, as many of their clients live alone, care home staff often haven’t considered that loneliness might be a significant factor in the lives of the people that they are supporting, simply because they assume that if a person is living in a communal environment they won’t be lonely. Yet quite the opposite is true - some of the loneliest people in the world are those in a room full of other people, and a bedroom can be a very isolating place if you don’t feel able, or cannot through physical or mental health issues, come out of that room to socialise with your peers.<o:p></o:p></span></div>
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<span lang="EN-US" style="background-color: white; font-size: 12pt;">With the festive season seen as a particularly isolating time of year, many charities and organisation are again voicing their concerns about loneliness. Last week <a href="https://www.ageuk.org.uk/latest-press/articles/2018/december/christmas-loneliness-statistics/" target="_blank">Age UK published analysis</a> that said </span><span style="border: none; font-size: 12pt;">1.7 million older people in England can go for a month without meeting up with a friend, and that 300,000 over 65s have not had a conversation with family or friends over the same period. They also said that half a million older people across the UK are likely to feel lonely this Christmas, with more than 230,000 older people expected to be on their own for at least one day over the Christmas period (from Christmas Eve to New Year’s Day).<o:p></o:p></span></div>
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<span lang="EN-US" style="background-color: white; font-size: 12pt;">After Christmas, I predict that there will be more reports of helplines receiving record numbers of calls over the festive period. <a href="https://www.thesilverline.org.uk/wp-content/uploads/2018/02/December-call-volumes-at-record-high.pdf" target="_blank">Last Christmas, </a></span><span lang="EN-US" style="font-size: 12pt;"><a href="https://www.thesilverline.org.uk/wp-content/uploads/2018/02/December-call-volumes-at-record-high.pdf" target="_blank">The Silver Line – the only free, 24-hour, national helpline for lonely and isolated older people open all year round – reported that Christmas 2017 was their busiest ever</a>, with over 14000 calls made to their helpline, around 1000 more than during Christmas 2016. Their greatest spike in calls was on New Year’s Day, with 1773 callers – up 14% on January 1<span style="position: relative; top: -4pt;">st </span>2017. <o:p></o:p></span></div>
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<span lang="EN-US" style="font-size: 12pt;">So how is loneliness being tackled? The response ranges from the <span style="background-color: white; background-position: initial initial; background-repeat: initial initial;"><a href="https://www.campaigntoendloneliness.org/" target="_blank">Campaign to End Loneliness</a> to the <a href="https://www.jocoxloneliness.org/" target="_blank">legacy work in memory of Jo Cox MP</a>, alongside the UK government appointing the world’s first Minister for Loneliness (<a href="https://www.traceycrouch.org/campaigns/loneliness" target="_blank">Tracey Crouch</a>, who later resigned her position over an unrelated matter), and the publication of <a href="https://www.gov.uk/government/news/pm-launches-governments-first-loneliness-strategy" target="_blank">England’s first Loneliness Strategy</a>.</span><o:p></o:p></span></div>
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<span lang="EN-US" style="background-color: white; font-size: 12pt;">But despite all of this, loneliness remains a huge issue. <a href="https://www.huffingtonpost.co.uk/beth-britton/reducing-isolation-amongst-the-elderly_b_8598782.html" target="_blank">In the run up to Christmas 2015, I wrote for the UK Huffington Post about a campaign Friends of the Elderly were running about loneliness</a>, and now here we are in 2018 and I have even more campaigns I could write about, which suggests we aren’t really making significant progress.</span><span lang="EN-US" style="background-color: white; font-size: 12pt;"><o:p></o:p></span></div>
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<span lang="EN-US" style="background-color: white; font-size: 12pt;">Why? Because to tackle loneliness we all have to do our bit. High profile initiatives, whilst very welcome and often packing a significant punch, can’t on their own make any individual feel less lonely, or persuade each of us to do something to help combat loneliness amongst our family members, friends, neighbours and acquaintances.</span><span lang="EN-US" style="background-color: white; font-size: 12pt;"><o:p></o:p></span></div>
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<span lang="EN-US" style="background-color: white; font-size: 12pt;">That ‘something’ doesn't have to be a huge action, it can be really small. At this time of year, just sending a Christmas card to someone you know says “I’m thinking of you.” If that person is older, not local to you, not on email and you don’t have an up-to-date phone number for them, a card is a simple way to reach out. Or for people who don’t want to write Christmas cards, donate to one of the charities that help to support people who are at risk of isolation and loneliness.</span><span lang="EN-US" style="background-color: white; font-size: 12pt;"><o:p></o:p></span></div>
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<span lang="EN-US" style="background-color: white; font-size: 12pt;">Of course there is no simple fix to the UK’s loneliness problem - a cuppa with your neighbour or having a festive clear-out and donating your unwanted items to a charity that supports people who are isolated and lonely won’t banish loneliness for every isolated person. But as you think of your New Year’s resolutions, bear in mind that a resolution to do your bit to tackle the UK’s loneliness epidemic is something that is achievable for all of us and might just make someone’s day (as well as yours).</span><span lang="EN-US" style="background-color: white; font-size: 12pt;"><o:p></o:p></span><br />
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<span lang="EN-US" style="background-color: white; font-size: 12pt;">Thank you for all your support in 2018. Until 2019...</span></div>
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<span style="font-family: "calibri";"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgsOI0iIn3PacRD2fega0JbUk0-IzyWXIPF6blh3Z-oyEiztOjQJXcVg53N4U502C4LdpzAgxKBQMJBttzEjtaiO0qopfMUQGw2KilN_JSbqu0tPpm-fzQvA2cumDnoaA7R4M4Qy6QFgERd/s1600/01signature.jpg" imageanchor="1" style="clear: left; color: #b63846; float: left; margin-bottom: 1em; margin-right: 1em; text-decoration: none;"><img alt="Beth x" border="0" height="98" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgsOI0iIn3PacRD2fega0JbUk0-IzyWXIPF6blh3Z-oyEiztOjQJXcVg53N4U502C4LdpzAgxKBQMJBttzEjtaiO0qopfMUQGw2KilN_JSbqu0tPpm-fzQvA2cumDnoaA7R4M4Qy6QFgERd/s200/01signature.jpg" style="-webkit-box-shadow: rgba(0, 0, 0, 0.2) 0px 0px 0px; border-bottom-left-radius: 0px; border-bottom-right-radius: 0px; border-top-left-radius: 0px; border-top-right-radius: 0px; border: 1px solid transparent; box-shadow: rgba(0, 0, 0, 0.2) 0px 0px 0px; padding: 8px; position: relative;" title="Beth x" width="200" /></a></span></div>
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<span lang="EN-US"><span style="font-family: "open sans"; font-size: 13px;"><span style="font-family: "calibri";"></span></span><br style="font-family: "Open Sans"; font-size: 13px;" /><span style="font-family: "open sans"; font-size: 13px;"><span style="font-family: "calibri";"></span></span><br style="font-family: "Open Sans"; font-size: 13px;" /><br style="font-family: "Open Sans"; font-size: 13px;" /><span style="font-family: "helvetica neue";"><br /></span><span style="background-color: white; font-family: "open sans"; font-size: 13px;"></span><span style="font-family: "helvetica neue";">You can follow me on Twitter: <a href="https://twitter.com/bethyb1886" style="color: #b63846; text-decoration: none;" target="_blank">@bethyb1886</a></span><br style="font-family: "Open Sans"; font-size: 13px;" /><span style="font-family: "helvetica neue";"><a href="https://www.facebook.com/D4Dementia/" style="color: #b63846; text-decoration: none;" target="_blank">Like D4Dementia on Facebook</a></span></span></div>
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Bethhttp://www.blogger.com/profile/09727279217918012517noreply@blogger.com0United Kingdom55.378051 -3.4359729999999912.203021 -86.05316049999999 90 79.18121450000001tag:blogger.com,1999:blog-3778521335346901337.post-81674199430307883322018-11-19T09:00:00.000+00:002018-12-21T09:27:47.386+00:00Bringing the generations together<div class="Body" style="border: none; font-family: "Helvetica Neue"; font-size: 11pt; margin: 0cm 0cm 0.0001pt;">
<span lang="EN-US">There have been few documentaries I’ve enjoyed as much as <a href="https://www.channel4.com/programmes/old-peoples-home-for-4-year-olds/on-demand/67301-001" target="_blank">Channel 4’s ‘Old People’s Home for 4 Year Olds’</a>. For me it ticked every box - it featured some amazing older people (the oldest was 102) and pre-school children (the youngest was 3), it looked at ageing, social care, healthcare, education and child development, it demonstrated innovation combined with scientific rigour, and best of all, it featured some really positive outcomes for the older people and the children involved.<o:p></o:p></span></div>
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<span lang="EN-US">It’s no surprised I loved the programme given the 9 years my dad spent in care homes, the work I do now with older people and those who provide care and support for them, and as a mum to a preschooler, my current immersion in the world of early years education. <o:p></o:p></span></div>
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<span lang="EN-US">The seed for my enthusiasm for intergenerational work was sown watching my dad light up whenever children visited other residents in his care home. Sadly though, the time many of these children spent in the home was brief and their visits sporadic, so my dad never really had the chance to fully benefit from their presence, unlike the 10 older people featured in Old People’s Home for 4 Year Olds.<o:p></o:p></span></div>
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<span lang="EN-US">In our household, this documentary was particularly timely - in the weeks it aired we were settling our daughter into pre-school. It hasn’t been the easiest transition for her, but I am absolutely certain given her relationship with my mum (who is 79), that had she had the option to go into an early-years educational establishment that meant she shared her pre-school time with older people she would have settled a lot quicker.<o:p></o:p></span></div>
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<span lang="EN-US">The synergies for me don’t end there either. In an attempt to help our daughter settle into pre-school life I made her a memory book, which I’m gradually filling up with photos of all the adventures that we’ve had this year. A memory book for an (almost) 3-year-old - They are for older people (and people living with dementia) right? Wrong! They are amazing at every age and stage of life, and the book has been phenomenal for our daughter. It's given her pages of lovely familiar photos to comfort her and prompt her to talk about her adventures, and it's enabled her teachers to get to know her so much quicker and easier.<o:p></o:p></span></div>
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<span lang="EN-US">In essence, we are actually informally running our own mini intergenerational experiment in our house. My mum lives with us, and although I don't have scientists or experts measuring the effects of this for our daughter and my mum, I can informally categorically say that our daughter’s communication, reading, interactions and skills-set have benefitted so much from extensive time with her Granny, and for my mum, our daughter has physically and mentally challenged her, kept her going and brought so much joy, excitement and unpredictability into her life.<o:p></o:p></span></div>
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<span lang="EN-US">If my mum was living alone she would have had none of this, and would have been much more isolated and potentially lonely, as many of her peers sadly are. Meanwhile for our daughter, with the best will in the world, she would never have had as many books read to her or enjoyed so many other little learning experiences without Granny around every day. <o:p></o:p></span></div>
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<span lang="EN-US">So, what do we learn from Old People’s Home for 4 Year Olds and my own domestic life? For me it’s that keeping generations in silos is so outdated. I’m not saying that arrangements like those shown on Old People’s Home for 4 Year Olds would work for every older person or indeed every preschooler. Some older people wouldn't want that level of noise, interaction and energy around them. Equally, some preschoolers may prefer to only be with their peers or adults of their parent’s age.<o:p></o:p></span></div>
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<span lang="EN-US">But there needs to be much more choice for everyone who would benefit. Older people who would like to interact with preschoolers could find a new purpose in life, teaching and supporting children to learn, and keeping themselves physically and mentally active into the bargain. Meanwhile preschoolers, who may have busy working parents and live long distances from their own grandparents, could benefit from the patience and time less hurried older people may be able to provide. And that, of course, is to say nothing of the exchange of wisdom that would be happening. <o:p></o:p></span></div>
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<span lang="EN-US">For those with a less practical, romantic vision who are only interested in hard facts, muse on this. Old People’s Home for 4 Year Olds showed significant physical and mental improvements in the older people over the 3-months of this experiment, all of which could potentially cut the costs associated with their health and care needs. Examples included:</span></div>
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<li><span style="font-size: 11pt;">102-year-old Sylvia going from being classed as frail at the beginning of the experiment to being no longer classed as frail at the end of the 3-months. Sylvia's cognitive health tests also improved by +3 points.</span></li>
<li><span style="font-size: 11pt;">97-year-old Victor improved his depression score by +3.</span></li>
<li><span style="font-size: 11pt;">81-year-old Lavinia went from taking 495 steps per day to 1750 later in the experiment, and this despite a fall during the 3-months.</span></li>
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<span style="font-size: 11pt;">And overall amongst the older participants:</span><br />
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<li><span style="font-size: 11pt;">5/10 improved their balance.</span></li>
<li><span style="font-size: 11pt;">9/10 improved their grip strength (an indicator of overall health).</span></li>
<li><span style="font-size: 11pt;">Almost half of the volunteers reduced their risk of falling.</span></li>
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<span lang="EN-US" style="font-family: "helvetica neue"; font-size: 11pt;">The children also showed improvements, including the youngest child, Zach, improving his personal and social interactions and use of language, and Mason improving his sense of what it means to be an older person and developing his ability to nurture and be empathetic. Indeed, such is the impact of this experiment that The ExtraCare Charitable Trust, who run Lark Hill Retirement Village where <o:p></o:p></span><span style="font-family: "helvetica neue";"><span style="font-size: 11pt;">Old People’s Home for 4 Year Olds was filmed, <a href="https://www.extracare.org.uk/newsroom/news/lasting-legacy-announced-following-success-of-old-people-s-home-for-4-year-olds/" target="_blank">have committed to a lasting legacy for the </a></span><span style="font-size: 14.666666984558105px;"><a href="https://www.extracare.org.uk/newsroom/news/lasting-legacy-announced-following-success-of-old-people-s-home-for-4-year-olds/" target="_blank">project</a></span><span style="font-size: 11pt;"><a href="https://www.extracare.org.uk/newsroom/news/lasting-legacy-announced-following-success-of-old-people-s-home-for-4-year-olds/" target="_blank"> that will see a rolling six week intergenerational activity programme</a> for Lark Hill </span><span style="font-size: 14.666666984558105px;">residents and children from its neighbouring nurseries.</span></span><br />
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<span lang="EN-US">I can see so many positives in intergenerational approaches, and in the 6+ years I’ve done the work I do now I don’t think anything has excited me as much as the potential for bringing the older and younger generations together. The possibilities seem almost endless to my eager brain which is desperate to see new initiatives for the youngest and oldest in our society.<o:p></o:p></span></div>
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<span lang="EN-US">I feel we have become very stale, very staid, in our approaches to supporting people at the polar opposites of the age spectrum and it saddens me. For older people, they don’t necessarily have years to wait to get the care and support that they need, to alleviate their loneliness, to give them purpose and a reason to live the best life that they can. And for our youngest citizens, their brains are alive with possibility and opportunity, just waiting for us to ignite their imagination and feed them with the facts about anything and everything that makes up the world we live in.<o:p></o:p></span></div>
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<span lang="EN-US">For me there is no time to waste. No ifs, no buts. I’m proud that in our own little way through our domestic life that we are doing this as a family, but I would love to hear from any individuals or organisations who want to do intergenerational work like that shown on Old People’s Home for 4 Year Olds at scale. For our older and younger citizens, let’s make this happen!</span></div>
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<span lang="EN-US">Until next time...</span></div>
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<span style="font-family: "calibri";"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgsOI0iIn3PacRD2fega0JbUk0-IzyWXIPF6blh3Z-oyEiztOjQJXcVg53N4U502C4LdpzAgxKBQMJBttzEjtaiO0qopfMUQGw2KilN_JSbqu0tPpm-fzQvA2cumDnoaA7R4M4Qy6QFgERd/s1600/01signature.jpg" imageanchor="1" style="clear: left; color: #b63846; float: left; margin-bottom: 1em; margin-right: 1em; text-decoration: none;"><img alt="Beth x" border="0" height="98" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgsOI0iIn3PacRD2fega0JbUk0-IzyWXIPF6blh3Z-oyEiztOjQJXcVg53N4U502C4LdpzAgxKBQMJBttzEjtaiO0qopfMUQGw2KilN_JSbqu0tPpm-fzQvA2cumDnoaA7R4M4Qy6QFgERd/s200/01signature.jpg" style="-webkit-box-shadow: rgba(0, 0, 0, 0.2) 0px 0px 0px; border-bottom-left-radius: 0px; border-bottom-right-radius: 0px; border-top-left-radius: 0px; border-top-right-radius: 0px; border: 1px solid transparent; box-shadow: rgba(0, 0, 0, 0.2) 0px 0px 0px; padding: 8px; position: relative;" title="Beth x" width="200" /></a></span></div>
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<span lang="EN-US"><span style="font-family: "open sans"; font-size: 13px;"><span style="font-family: "calibri";"></span></span><br style="font-family: "Open Sans"; font-size: 13px;" /><span style="font-family: "open sans"; font-size: 13px;"><span style="font-family: "calibri";"></span></span><br style="font-family: "Open Sans"; font-size: 13px;" /><br style="font-family: "Open Sans"; font-size: 13px;" /><span style="font-family: "helvetica neue";"><br /></span><span style="background-color: white; font-family: "open sans"; font-size: 13px;"></span><span style="font-family: "helvetica neue";">You can follow me on Twitter: <a href="https://twitter.com/bethyb1886" style="color: #b63846; text-decoration: none;" target="_blank">@bethyb1886</a></span><br style="font-family: "Open Sans"; font-size: 13px;" /><span style="font-family: "helvetica neue";"><a href="https://www.facebook.com/D4Dementia/" style="color: #b63846; text-decoration: none;" target="_blank">Like D4Dementia on Facebook</a></span></span></div>
Bethhttp://www.blogger.com/profile/09727279217918012517noreply@blogger.com0United Kingdom55.378051 -3.4359729999999912.203021 -86.05316049999999 90 79.18121450000001tag:blogger.com,1999:blog-3778521335346901337.post-37524879977707418882018-10-15T09:00:00.000+01:002018-10-22T11:40:13.313+01:00What to do for 'the best'<div class="Body" style="border: none; font-family: "Helvetica Neue"; font-size: 11pt; margin: 0cm 0cm 0.0001pt;">
<span lang="EN-US">Last year I wrote a popular blog post entitled <a href="http://d4dementia.blogspot.com/2017/05/five-things-i-wish-id-known-before-my.html" target="_blank">‘Five things I wish I'd known before my dad's dementia’</a></span><span lang="EN-US">. Point two was entitled ‘What to do for the best’ and said:</span></div>
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<span style="font-family: inherit;"><span lang="EN-US">"The great problem when my dad was living with dementia is that I wasn't a researcher, or an observer of all things 'dementia'. I never Googled what other people's dad's who were living with dementia really enjoyed. Nor did I attend dementia groups, access social media extensively, or read dementia books or blogs (so the fact that you are reading this means you are one step ahead of where I was!).</span> </span></blockquote>
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<span style="font-family: inherit;"><span lang="EN-US">I learnt what worked for my dad eventually but it was often through trial and error, and when I think back so much time was wasted. For example, I would never have persevered with ensuring my dad had TV in his room: in hindsight I would have scrapped the TV on day one and replaced it with the CD player and music collection that brought infinitely more joy to his life. I’d have made the environmental changes that personalised dad’s room much quicker, and </span><span class="Hyperlink1" style="color: #b63846;"><span lang="EN-US"><span style="color: #b63846; text-decoration: none;"><a href="http://d4dementia.blogspot.co.uk/2012/05/every-face-tells-story.html" target="_blank">the life story work</a> </span></span></span><span lang="EN-US">staff asked for my help with and I took ages to dig out photos and make the memory box, I’d have done that quicker too.</span> </span></blockquote>
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<span lang="EN-US" style="font-family: inherit;">We'd buy things, like CD's, for birthdays and Christmases thinking it was nice to space out the gifts. Big mistake. Dementia is terminal, you are 'on the clock' as it were. Get as many lovely things as you can afford and enjoy every single one of them as soon as possible so you have them for as long as possible. My dad was never into big birthday or Christmas celebrations, and looking back maybe he was onto something with that.<span style="font-family: "helvetica neue";"><span style="font-size: 14.666666984558105px;">"</span></span></span></blockquote>
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<span lang="EN-US">I often receive emails from family members outlining their situation and asking me what to do for 'the best', and my ‘Five things I wish I'd known before my dad's dementia’ post prompted a few more of those emails, so here are my thoughts on what to do for 'the best':<o:p></o:p></span></div>
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<b><span lang="EN-US">Don’t beat yourself up<o:p></o:p></span></b></div>
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<span lang="EN-US">Wanting to know what to do for ‘the best’ is a really common feeling that most of us have in relation to a variety of situations. A natural human instinct is to want to avoid getting things ‘wrong’, but when I was growing up my parents always said: “He who never made a mistake never made anything.” There is no such thing as the perfect way to support a loved one with dementia, so don’t beat yourself up.<o:p></o:p></span></div>
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<b><span lang="EN-US">'The best' in your situation is unique to your situation<o:p></o:p></span></b></div>
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<span lang="EN-US">Whenever anyone asks me what is for 'the best' in relation to their loved one with dementia my opening suggestion is always to remember that ‘the best’ in your situation will be unique to your situation. My best, your best and everyone else’s best is entirely individual to them. This phrase really underpins that: “When you’ve met one person with dementia, you’ve met one person with dementia.” Ultimately, there is no definitive rule book on what the best care and support looks like - I was guided more by instinct than knowledge, and sometimes that’s no bad thing.<o:p></o:p></span></div>
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<b><span lang="EN-US">Sometimes a desire to do our ‘best’ can lead to our worst<o:p></o:p></span></b></div>
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<span lang="EN-US">Reading the accounts of people living with dementia in the last few years has made me realise that as care partners we can unintentionally become very caught up in the desire to do our ‘best’, sometimes stifling the person with dementia, disabling or disempowering them, which is far from 'the best' for anyone but hard to recognise when we are living in the moment. I’ve only really learnt this lesson as a result of following the work of empowerment groups like <a href="http://www.dementiavoices.org.uk/" target="_blank">DEEP</a> and <a href="https://www.dementiaallianceinternational.org/" target="_blank">DAI</a>, realising the 'I'm doing this for the best' trap is easy to fall into and one I fell into myself with my dad sometimes.<o:p></o:p></span></div>
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<span lang="EN-US">As Wendy Mitchell says in her book, <a href="https://www.bloomsbury.com/uk/somebody-i-used-to-know-9781408893340/" target="_blank">'Somebody I used to know'</a>:</span></div>
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<span lang="EN-US" style="font-family: inherit;">"They were one of those typical couples, the ones where the wife takes the lead; she takes his coat from his arms, she folds it over, sits him down, checks on him - once, twice - then goes off to fetch a cup of tea. I see it a lot, wherever I go. I know they're only trying to help, so why does it always look to me as if these husbands - or wives - are so much more advanced in their disease than me, someone who has no one to fetch and carry for me, to finish my sentences, to decide that I can't even manage the small chores that are still very much physically and mentally possible."</span></blockquote>
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<b><span lang="EN-US">Being the best YOU can be is enough<o:p></o:p></span></b></div>
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<span lang="EN-US">I was by my own admission far from perfect in supporting my dad, but I was the best I could be, and I’ve realised since dad's death that you can be no more than that. When dad was alive the decisions came thick and fast, from small things to big things and everything in-between. I would constantly wonder, “Is this for the best?” about everything from signing a consent form to deliberating about medication, or taking the ‘risk’ of supporting dad to eat when healthcare professionals questioned if he could cope with anything orally due to his <a href="http://d4dementia.blogspot.com/2012/09/hard-to-swallow.html" target="_blank">dysphagia</a>. Comparing yourself to others, as I’ve known some relatives to do, will only lead to feelings of failure, or the opposite - an exalted view of how great you are at supporting your loved one. Neither is helpful. This quote sums it up perfectly:<o:p></o:p></span></div>
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<b><span lang="EN-US">Coping with the feeling you haven’t done your 'best'<o:p></o:p></span></b></div>
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<span lang="EN-US">Sometimes I run information and knowledge session for the relatives of people who are supported by care providers. These often involve a lot of sharing of our individual stories, <a href="http://d4dementia.blogspot.com/2012/08/dementias-emotional-rollercoaster.html" target="_blank">and sometimes become understandably very emotional for all of us</a>. One of the biggest contributors to not feeling you are doing or have done 'the best' for your loved one is when professional care and support is needed. My view: asking for help doesn't mean you're a failure. We desperately need to move away from the rhetoric that being a family carer means doing everything for your loved one, alone, for the rest of their life, no matter what. Doing your 'best' should never be a byword for burning yourself out.<o:p></o:p></span></div>
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<span lang="EN-US">Until next time...</span></div>
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<span style="font-family: "calibri";"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgsOI0iIn3PacRD2fega0JbUk0-IzyWXIPF6blh3Z-oyEiztOjQJXcVg53N4U502C4LdpzAgxKBQMJBttzEjtaiO0qopfMUQGw2KilN_JSbqu0tPpm-fzQvA2cumDnoaA7R4M4Qy6QFgERd/s1600/01signature.jpg" imageanchor="1" style="clear: left; color: #b63846; float: left; margin-bottom: 1em; margin-right: 1em; text-decoration: none;"><img alt="Beth x" border="0" height="98" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgsOI0iIn3PacRD2fega0JbUk0-IzyWXIPF6blh3Z-oyEiztOjQJXcVg53N4U502C4LdpzAgxKBQMJBttzEjtaiO0qopfMUQGw2KilN_JSbqu0tPpm-fzQvA2cumDnoaA7R4M4Qy6QFgERd/s200/01signature.jpg" style="-webkit-box-shadow: rgba(0, 0, 0, 0.2) 0px 0px 0px; border-bottom-left-radius: 0px; border-bottom-right-radius: 0px; border-top-left-radius: 0px; border-top-right-radius: 0px; border: 1px solid transparent; box-shadow: rgba(0, 0, 0, 0.2) 0px 0px 0px; padding: 8px; position: relative;" title="Beth x" width="200" /></a></span></div>
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<span lang="EN-US"><span style="font-family: "open sans"; font-size: 13px;"><span style="font-family: "calibri";"></span></span><br style="font-family: "Open Sans"; font-size: 13px;" /><span style="font-family: "open sans"; font-size: 13px;"><span style="font-family: "calibri";"></span></span><br style="font-family: "Open Sans"; font-size: 13px;" /><br style="font-family: "Open Sans"; font-size: 13px;" /><span style="font-family: "helvetica neue";"><br /></span><span style="background-color: white; font-family: "open sans"; font-size: 13px;"></span><span style="font-family: "helvetica neue";">You can follow me on Twitter: <a href="https://twitter.com/bethyb1886" style="color: #b63846; text-decoration: none;" target="_blank">@bethyb1886</a></span><br style="font-family: "Open Sans"; font-size: 13px;" /><span style="font-family: "helvetica neue";"><a href="https://www.facebook.com/D4Dementia/" style="color: #b63846; text-decoration: none;" target="_blank">Like D4Dementia on Facebook</a></span></span></div>
Bethhttp://www.blogger.com/profile/09727279217918012517noreply@blogger.com0United Kingdom55.378051 -3.4359729999999912.203021 -86.05316049999999 90 79.18121450000001tag:blogger.com,1999:blog-3778521335346901337.post-84129774987021256002018-09-17T09:00:00.000+01:002018-09-19T15:48:54.476+01:00A celebration of what is possible<div class="Body" style="border: none; font-family: "Helvetica Neue"; font-size: 11pt; margin: 0cm 0cm 0.0001pt;">
<span lang="EN-US">As another September brings <a href="https://www.alz.co.uk/world-alzheimers-month" target="_blank">World Alzheimer’s Month</a>, there is always the temptation to write a blog that points out how much we still need to do to improve awareness, care and support for people who are living with dementia and their families and friends.<o:p></o:p></span></div>
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<span lang="EN-US">For this World Alzheimer’s Month, however, I have cause for celebration. <a href="http://d4dementia.blogspot.com/2012/05/welcome-to-d-for-dementia.html" target="_blank">Over 6 years ago</a> I began D4Dementia to, “Provide support and advice to those faced with similar situations (to those we faced with my dad), inform and educate care professionals and the wider population, promote debate and create improvements in dementia care.” My inspiration was to share some of the positive aspects of my dad’s life and for others to learn from them. As I wrote more posts, I also shared aspects of my dad’s care and support that weren’t good enough, again with the intention that others may learn something. As the years have gone by I’ve diversified from blogging to do more and more <a href="https://bethbritton.com/consultant/training-mentoring/" target="_blank">training and mentoring</a> to make that mission real, and in September 2018 my educational work has achieved the quality mark of <a href="https://bethbritton.com/2018/09/17/endorsement-from-skills-for-care/" target="_blank">Skills for Care Endorsement</a>.</span></div>
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<span lang="EN-US">For many people who already have endorsement or another accreditation this may seem routine, but for me it’s something I never imagined was possible. I’m not an academic, backed by a major educational institution. I’m a former carer to my dad, and everything I’ve done since he died has been based on our experiences - a regular family turned upside down by dementia.<o:p></o:p></span></div>
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<span lang="EN-US">I wanted to create a legacy for my dad that wasn’t about mourning his loss however keenly I still feel it, or about beating a drum of hate for the people who let him down so badly when he was at his most vulnerable. I wanted to create positive change - I felt passionately then, as I do now, that if I could help just one person living with dementia, or one family supporting a loved one with dementia, or one professional working in dementia care and support, to find the information and advice that they needed then I’d done something amazing.<o:p></o:p></span></div>
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<span lang="EN-US">I’ve since read and heard similar aspirations from so many other people affected by dementia, most notably recently from reading Wendy Mitchell’s phenomenal book, <a href="https://www.bloomsbury.com/uk/somebody-i-used-to-know-9781408893340/" target="_blank">‘Somebody I used to know’</a>. The desire to help just one person, to scatter crumbs of hope and positivity, however small those crumbs might be and however uncertain you are of how far they might travel, gives those of us who’ve had any sort of experience of dementia a feeling that there is something good that can come out of a diagnosis and a reality that changes life forever, and in my dad’s case robbed us of him far earlier than we might otherwise have been.<o:p></o:p></span></div>
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<span lang="EN-US">Reflecting on my endorsement as a training provider, it isn’t just for me. It’s not just for my dad either, although I hope and believe that he would be very proud. It’s for every person who’s ever felt a passion to use their experiences of dementia, or any other health condition, to help others but have wondered if A) anyone would be interested in their experiences, and B) whether they have the courage or confidence to share them.<o:p></o:p></span></div>
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<span lang="EN-US">I think we are conditioned from an early age - thanks to the school system - to view education as something delivered by people with far more qualifications than us in institutions with a track record of producing learning that is intended to equip students for whatever life holds for them. Little value is placed on lived experience, which is why I always dismissed applying for any quality mark for my training as something unattainable. It's only thanks to the encouragement of my family that I made that first tentative enquiry.<o:p></o:p></span></div>
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<span lang="EN-US">I hope my experience of endorsement shows that lived experience is now being recognised for the value I’ve always believed it has. Since I began my training and mentoring work I've known from feedback - and most importantly results - that what I was doing had immense merit and quality, but going through a rigorous process of proving that to an organisation like Skills for Care means that it isn’t just me saying what I do is good, or my lovely clients or colleagues writing me testimonials (which I’m extremely grateful for) - it’s an independent and highly-regarded organisation saying it.<o:p></o:p></span></div>
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<span lang="EN-US">More than me proving a point, however, I hope it encourages others to realise that personal experiences have the power to educate to a level that is worthy of accreditation. Earlier this year I read with immense interest about <a href="https://dementiafriendly.wordpress.com/" target="_blank">the training offered by York Minds and Voices with a course entitled: ‘A good life with dementia.’</a> </span><span lang="EN-US">This is a course, delivered by people living with dementia <i>for </i>people living with dementia. A simple but groundbreaking concept.<o:p></o:p></span></div>
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<span lang="EN-US">This course embodies the peer support element that I believe is absolutely vital in good post-diagnostic support, and I was fascinated to follow its progress. I very much hope that inspired by what York Minds and Voices did earlier this year, training courses like this will become the norm – created and delivered by people living with dementia, financially supported by health and social care organisations and commissioners, and ultimately with the chance to become accredited to show the world their true merit. There can be no greater educators about dementia, or any other health condition, than those living with it.<o:p></o:p></span></div>
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<span lang="EN-US">I am committed to including the experiences and voices of people living with dementia in my training, whether it’s through quotes, showing films, or I hope one day with more personal involvement from people living with dementia. And of course my dad’s experiences are interwoven throughout everything I do - you might think that 6+ years after his death they would have become irrelevant, but in many respects so little has meaningfully changed in care and support, attitudes and beliefs, experiences and outcomes.<o:p></o:p></span></div>
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<span lang="EN-US">My thanks go to all of my clients and colleagues who have supported my application for endorsement, to Skills for Care for considering and ultimately endorsing my application, and to everyone who reads this blog, follows me on social media or has championed my work. Most of all though, I thank every person I’ve met living with dementia and their family members who have taught me something about their lived experience, and of course to my dad. Those last 19 years of his life featured some of the toughest challenges I have ever - and probably will ever – face, but I learnt more than I ever imagined possible, and the privilege of keeping my dad’s legacy alive by sharing those lessons is something I hold very dear.<o:p></o:p></span><br />
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<span lang="EN-US">Until next time...</span></div>
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<span style="mso-bidi-font-family: Calibri;"><span style="font-family: "calibri";"><span style="font-family: "calibri";"><span style="font-family: "calibri";"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgsOI0iIn3PacRD2fega0JbUk0-IzyWXIPF6blh3Z-oyEiztOjQJXcVg53N4U502C4LdpzAgxKBQMJBttzEjtaiO0qopfMUQGw2KilN_JSbqu0tPpm-fzQvA2cumDnoaA7R4M4Qy6QFgERd/s1600/01signature.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img alt="Beth x" border="0" height="98" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgsOI0iIn3PacRD2fega0JbUk0-IzyWXIPF6blh3Z-oyEiztOjQJXcVg53N4U502C4LdpzAgxKBQMJBttzEjtaiO0qopfMUQGw2KilN_JSbqu0tPpm-fzQvA2cumDnoaA7R4M4Qy6QFgERd/s200/01signature.jpg" title="Beth x" width="200" /></a></span></span></span></span></div>
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<span style="font-family: "helvetica neue"; font-size: 14.666666984558105px;">You can follow me on Twitter: <a href="https://twitter.com/bethyb1886" target="_blank">@bethyb1886</a></span><br />
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Bethhttp://www.blogger.com/profile/09727279217918012517noreply@blogger.com0United Kingdom55.378051 -3.4359729999999912.203021 -86.05316049999999 90 79.18121450000001tag:blogger.com,1999:blog-3778521335346901337.post-86335469157818181902018-08-20T09:00:00.000+01:002018-09-19T15:36:46.633+01:00Supporting LGBT people with dementia<div class="Default" style="border: none; font-family: "Helvetica Neue"; font-size: 11pt; margin: 0cm 0cm 0.0001pt;">
<span lang="EN-US" style="background-color: #fefffe; background-position: initial initial; background-repeat: initial initial;">Almost a year ago (September 2017) saw the launch of the </span><span class="Hyperlink0" style="color: #b63846;"><span lang="FR" style="background-color: #fefffe; background-position: initial initial; background-repeat: initial initial;"><a href="http://www.dementiaaction.org.uk/joint_work/dementia_and_seldom_heard_groups" target="_blank"><span style="color: #b63846; text-decoration: none;">Dementia Action Alliance</span><span lang="EN-US" style="color: #b63846; text-decoration: none;">’s (DAA) ‘From Seldom Heard to Seen and Heard’ Campaign</span></a></span></span><span lang="EN-US" style="background-color: #fefffe; background-position: initial initial; background-repeat: initial initial;">. The campaign focuses on people living with dementia and their families from six communities who are often marginalised from services and support: Lesbian, Gay, Bisexual and Transgender + (LGBT), Black, Asian and Minority Ethnic (BAME), Young onset dementia, The prison population, People living in rural communities and People with learning disabilities.<span class="None"><o:p></o:p></span></span></div>
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<span lang="EN-US" style="background-color: #fefffe; background-position: initial initial; background-repeat: initial initial;">I’m </span><span class="Hyperlink0" style="color: #b63846;"><span lang="EN-US" style="background-color: #fefffe; background-position: initial initial; background-repeat: initial initial;"><a href="http://www.bethbritton.com/news/06-070813DAA.htm" target="_blank"><span style="color: #b63846; text-decoration: none;">a national member of the DAA</span></a></span></span><span lang="EN-US" style="background-color: #fefffe; background-position: initial initial; background-repeat: initial initial;">, and proud to have worked with the team in developing this campaign, mostly by utilizing my extensive knowledge and experience of working with people who have </span><span class="Hyperlink0" style="color: #b63846;"><span lang="EN-US" style="background-color: #fefffe; background-position: initial initial; background-repeat: initial initial;"><a href="http://www.bethbritton.com/news/64-110316MacIntyre.htm" target="_blank"><span style="color: #b63846; text-decoration: none;">a learning disability and dementia</span></a></span></span><span lang="EN-US" style="background-color: #fefffe; background-position: initial initial; background-repeat: initial initial;">. I wrote about </span><span class="Hyperlink0" style="color: #b63846;"><span lang="EN-US" style="background-color: #fefffe; background-position: initial initial; background-repeat: initial initial;"><span style="color: #b63846; text-decoration: none;"><a href="http://d4dementia.blogspot.co.uk/2017/10/why-culture-matters-in-dementia-care.html" target="_blank">BAME communities</a> </span></span></span><span lang="EN-US" style="background-color: #fefffe; background-position: initial initial; background-repeat: initial initial;">in my October 2017 blog, my March 2018 blog was all about <a href="http://d4dementia.blogspot.com/2018/03/living-with-dementia-in-rural-community.html" target="_blank">rural communities</a>, and last month I told Kathy’s story, about <a href="http://d4dementia.blogspot.com/2018/07/kathys-story-living-with-learning_16.html" target="_blank">living with a learning disability and dementia</a>.<o:p></o:p></span></div>
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<span lang="EN-US" style="background-color: #fefffe; background-position: initial initial; background-repeat: initial initial;">For this post, I want to think about the challenges for people with dementia who are lesbian, gay, bisexual or transgender (LGBT+). Of the six groups the DAA campaign focuses on, LGBT people with dementia are the most hidden of all in my opinion and arguably the most stigmatised, coping with societal attitudes towards their age, sexuality and dementia at the same time.<o:p></o:p></span></div>
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<span lang="EN-US" style="background-color: #fefffe; background-position: initial initial; background-repeat: initial initial;">Many older lesbian, gay, bisexual or transgender people have led a life that's been all about hiding away, characterised by fear and intimidation. Historically as a nation we haven’t been welcoming to LGBT people with layer upon layer of discrimination and ostracisation, not to mention violence and criminalisation. Indeed, homosexuality was illegal in the UK until 1967 and was classified as a mental illness until 1973. </span><br />
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<span lang="EN-US" style="background-color: #fefffe; background-position: initial initial; background-repeat: initial initial;">Since then, the immense changes that have happened legally and societally will have brought a huge amount of relief and joy for many LGBT people, but it's important that</span><span style="background-color: #fefffe; font-size: 11pt;"> my generation - who see PRIDE marches and same-sex couples marrying - don't forget the struggles that remain vivid in the minds of some LGBT people who are now ageing. </span><a href="https://www.belong.org.uk/news/2018/08/taking-to-the-streets-with-pride" style="background-color: #fefffe; font-size: 11pt;" target="_blank">Examples like this, of a care provider celebrating with their own PRIDE event</a><span style="background-color: #fefffe; font-size: 11pt;"> are still few and far between. No aged-care client that I work with has done anything like this to my knowledge, and I know from quizzing learners at my training sessions about how we meet the needs of people from different communities, including LGBT, that I usually get blank looks.</span></div>
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<span lang="EN-US" style="background-color: #fefffe; background-position: initial initial; background-repeat: initial initial;">One of the big motivators for writing this blog came from what a learner said to me a few weeks ago, echoing others in the past: “We don’t have anyone living in our care home who’s gay!” It’s an interesting assertion that many staff struggle to quantify since they have to admit that they don’t know the full life history of every person they provide care and support for, and that which they do know may be the ‘acceptable’ front that so many LGBT people in their 70’s, 80’s and 90’s have cultured from a young age to protect themselves from the worse of what society would have thrown at them over their lifetimes.<o:p></o:p></span></div>
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<span lang="EN-US" style="background-color: #fefffe; background-position: initial initial; background-repeat: initial initial;">With the development of dementia, however, that carefully protected private life can become extremely vulnerable to intrusion in so many different ways. Contact with health and social care services may be something that a lesbian, gay, bi or trans person actively avoids due to fears from their earlier life of medical professionals who tried to ‘cure’ them through ‘conversion’ therapy, much of which would have come under the umbrella of old-style psychiatric services, and of course modern-day psychiatry is a key part of dementia care now.<o:p></o:p></span></div>
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<span lang="EN-US" style="background-color: #fefffe; background-position: initial initial; background-repeat: initial initial;">If an LGBT person has a partner, that person may be assumed to be a relative or friend rather than a partner simply because they are the same sex, and difficulties around a homosexual partner having the same rights as a heterosexual partner remain commonplace. The disadvantage doesn’t end if the person is single either – a person with dementia who doesn’t have a partner, children or other loved ones to advocate for them is likely to have poorer experiences of health and social care services, and due to their sexuality, many older LGBT people may have become estranged from their family.<o:p></o:p></span></div>
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<span lang="EN-US" style="background-color: #fefffe; background-position: initial initial; background-repeat: initial initial;">Life can feel very exposed for a person with dementia, and exposure may be the very last thing someone who’s never come out, or who struggled to come out many years ago, wants. A person may feel the need to come out repeatedly as they meet with the numerous different professionals that characterise most people’s experiences of health and social care services. Working out when it is ‘safe’ to disclose your sexual or gender identify can be difficult enough without the added complication of dementia affecting your cognition and decision-making abilities.<o:p></o:p></span></div>
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<span lang="EN-US" style="background-color: #fefffe; background-position: initial initial; background-repeat: initial initial;">Issues around trust can be hugely challenging, not least since the person may be terrified of people who are effectively strangers providing care and support or any peers that they are living with in a care home environment making hurtful judgements should they learn the person’s sexuality or gender identity. Problems around personal care can be particularly acute, since the person may worry about being punished for their sexuality, or may be fearful of any scars from gender reassignment being noticed, commented on, discussed by colleagues or documented in a care plan.<o:p></o:p></span></div>
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<span lang="EN-US" style="background-color: #fefffe; background-position: initial initial; background-repeat: initial initial;">We talk a lot in social care about supporting people to feel engaged and to express themselves, but if you’ve been born male and feel most comfortable identifying as a woman and dressing accordingly (or vice versa), trying to be yourself whilst living in a communal environment may feel impossible. For that person the risk of isolation and loneliness, and potentially more rapid progression of their dementia as a result, is a very real possibility.<o:p></o:p></span></div>
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<span lang="EN-US" style="background-color: #fefffe; background-position: initial initial; background-repeat: initial initial;">So how do we overcome these challenges? I’m not naive enough to believe that care homes or other social care environments can universally become places that are welcoming and inclusive for LGBT people overnight. But while we cannot necessarily influence the viewpoints of the person’s peers, I believe that progress can be made in educating the workforce.<o:p></o:p></span></div>
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<span lang="EN-US" style="background-color: #fefffe; background-position: initial initial; background-repeat: initial initial;">When I first designed my training modules a few years ago, I will admit I didn’t include education about any seldom heard groups. <a href="http://d4dementia.blogspot.com/2018/05/action-for-dementia-care-and-support01.html" target="_blank">Now, I talk about LGBT, BAME, and LD communities routinely, as well as younger people living with dementia.</a> Presenting the idea that staff may be supporting a person from the LGBT community and questioning assumptions is a first step towards improving inclusion. <o:p></o:p></span></div>
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<span lang="EN-US" style="background-color: #fefffe; background-position: initial initial; background-repeat: initial initial;">Importantly, it also ties in with everything I teach in relation to life story work. The idea that not everyone wants to share their life story, or that they may share what they believe are the ‘acceptable’ details, rather than those they fear are ‘unacceptable’, are some of the biggest challenges in how we understand the person’s past to improve their support today.<o:p></o:p></span></div>
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<span lang="EN-US" style="background-color: #fefffe; background-position: initial initial; background-repeat: initial initial;">Acknowledging where difficulties like these lie, and pooling our knowledge to improve how we meet the needs of our ageing LGBT population, is so important if we are to make services more responsive to lesbian, gay, bisexual or transgender people who are living with dementia and need, more than anything, to feel less stigmatised… not more.<o:p></o:p></span></div>
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<span lang="EN-US">Until next time...</span></div>
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<span style="mso-bidi-font-family: Calibri;"><span style="font-family: "calibri";"><span style="font-family: "calibri";"><span style="font-family: "calibri";"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgsOI0iIn3PacRD2fega0JbUk0-IzyWXIPF6blh3Z-oyEiztOjQJXcVg53N4U502C4LdpzAgxKBQMJBttzEjtaiO0qopfMUQGw2KilN_JSbqu0tPpm-fzQvA2cumDnoaA7R4M4Qy6QFgERd/s1600/01signature.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img alt="Beth x" border="0" height="98" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgsOI0iIn3PacRD2fega0JbUk0-IzyWXIPF6blh3Z-oyEiztOjQJXcVg53N4U502C4LdpzAgxKBQMJBttzEjtaiO0qopfMUQGw2KilN_JSbqu0tPpm-fzQvA2cumDnoaA7R4M4Qy6QFgERd/s200/01signature.jpg" title="Beth x" width="200" /></a></span></span></span></span></div>
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<span style="font-family: "helvetica neue"; font-size: 14.666666984558105px;"><br /></span><span style="font-family: "helvetica neue"; font-size: 14.666666984558105px;">You can follow me on Twitter: <a href="https://twitter.com/bethyb1886" target="_blank">@bethyb1886</a></span><br />
<span style="font-family: "helvetica neue"; font-size: 14.666666984558105px;"><a href="https://www.facebook.com/D4Dementia/" target="_blank">Like D4Dementia on Facebook</a></span>Bethhttp://www.blogger.com/profile/09727279217918012517noreply@blogger.com0United Kingdom55.378051 -3.4359729999999912.203021 -86.05316049999999 90 79.18121450000001tag:blogger.com,1999:blog-3778521335346901337.post-80770765756431966912018-07-16T09:00:00.001+01:002018-09-19T15:37:02.140+01:00Kathy’s story - Living with a learning disability and dementia<div class="Body" style="border: none; font-family: "helvetica neue"; font-size: 11pt; margin: 0cm 0cm 0.0001pt;">
<span lang="EN-US" style="font-family: "calibri" , sans-serif;">Imagine reaching your 40’s or 50’s having lived your whole life in the shadows of discrimination, exclusion, social stigma and poor treatment within many health and social care services... and then developing dementia. You’re younger than the majority of people who live with dementia and your dementia is likely (either through our perceptions or the circumstances of your health) to progress more rapidly. You are now part of one of the most seldom heard groups in society<b>**</b> - People living with a learning disability and dementia.<o:p></o:p></span></div>
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<span lang="EN-US" style="font-family: "calibri" , sans-serif;">This is an issue close to my heart: <a href="http://www.bethbritton.com/news/64-110316MacIntyre.htm" target="_blank">My longest serving consultancy client of nearly 5 years are learning disability provider MacIntyre</a>. I count many of the amazing people they support and their awesome staff as both colleagues and friends, but it wasn’t MacIntyre who originally introduced me to what life can be like when you’re a younger person with a learning disability and dementia.<o:p></o:p></span></div>
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<span lang="EN-US" style="font-family: "calibri" , sans-serif;">On the day my dad moved into the care home that he would go on to spend over 8 years in, we met Kathy*. She was a bubbly, smiley, caring lady, clearly much younger than my dad and every other resident in the care home. She loved to ask questions and talk to anyone who would spend time with her.<o:p></o:p></span></div>
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<span lang="EN-US" style="font-family: "calibri" , sans-serif;">Kathy wasn’t living with Down’s Syndrome, which is the learning disability most people associate with the development of Alzheimer’s Disease. Her only visitor was her sister, an older lady, devoted to her younger sibling and fiercely protective of her. Kathy’s sister was one of the most active and vocal contributors to resident’s meetings, making her a firm ally of ours. I’m sure she told me more about the disabilities and health issues that had dominated Kathy’s earlier life on one of our numerous chats over a cuppa, but I don’t recall the details.<o:p></o:p></span></div>
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<span lang="EN-US" style="font-family: "calibri" , sans-serif;">Kathy’s room was in the corner at the end of the corridor, almost as if she was somehow set apart from the other residents - I never knew if that was deliberate or not. Kathy spent a lot of time in her room, making multiple clothing changes in a day and immersed with her toys and dolls. It was one of the most cosy rooms in the care home with every spare space filled, including having a bird feeder outside and plants on the windowsill that Kathy tended every day.<o:p></o:p></span></div>
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<span lang="EN-US" style="font-family: "calibri" , sans-serif;">It’s been over 6 years since my dad died, but I still remember Kathy. She had a sparkle, but also a sadness. To be in a care home, surrounded by people significantly older than her, with staff who were mostly wonderful but without much time to spend with her (and the time they did spend with her was very much about tasks and functions) didn’t seem like the right environment for Kathy. She needed interaction, occupation (as did everyone!) and to socialise with her peers. <o:p></o:p></span></div>
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<span lang="EN-US" style="font-family: "calibri" , sans-serif;">Without her sister Kathy’s life would have been almost nondescript. Just another learning disability statistic, put into an aged care home that in the local area had a reputation for taking people other care homes wouldn’t take. Kathy’s sister was the person who had filled Kathy’s room with the things she loved, bought the clothes Kathy loved to keep changing into and the foodie treats that brightened up the long days.<o:p></o:p></span></div>
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<span lang="EN-US" style="font-family: "calibri" , sans-serif;">Granted, the care home was better than Kathy living in one of the infamous long-stay hospitals, but that is a comparison that only looks favourable because long-stay hospitals really are the lowest dominator in terms of care and support provision for people with a learning disability. Back when my dad was alive I thought that was all Kathy could hope for, then in 2013 I began working with <a href="https://www.macintyrecharity.org/" target="_blank">MacIntyre</a> and was introduced to supported living, lifelong learning, person-centred approaches, Great Interactions, and the gold-standard of involving people in their care and support. The rest, as they say, is history.<o:p></o:p></span></div>
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<span lang="EN-US" style="font-family: "calibri" , sans-serif;">I wish Kathy had known MacIntyre. I wish every person living with a learning disability, and especially people with LD who are developing dementia, could know MacIntyre. I’ll admit I’m bias; I’ve been heavily involved in their dementia work so of course I’m a huge supporter, but it really is groundbreaking as I wrote about here: <a href="https://www.huffingtonpost.co.uk/beth-britton/watch-and-learn-people-wi_b_12538642.html" target="_blank">‘Watch And Learn: People With Learning Disabilities Leading The Way’</a> and here: <a href="https://www.huffingtonpost.co.uk/beth-britton/a-tale-of-two-worlds_1_b_18564628.html" target="_blank">‘A Marriage Of Learning Disabilities And Dementia’</a>.<o:p></o:p></span></div>
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<span lang="EN-US" style="font-family: "calibri" , sans-serif;">But why does it matter you might wonder? Surely people like Kathy are few and far between? In fact, quite the opposite is true. People with a learning disability are living longer than ever before, but have a greater chance of developing dementia, with the link between Down’s Syndrome and Alzheimer’s Disease that I mentioned earlier being the biggest-known risk factor. Research and knowledge about LD and dementia remains patchy though, in common with so much about how as a society we view the importance of people with learning disabilities within our communities. <o:p></o:p></span></div>
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<span lang="EN-US" style="font-family: "calibri" , sans-serif;">Things are changing and heading in a more positive direction, but it shames us all that statistics like those calculated by the <a href="http://www.bristol.ac.uk/sps/leder/" target="_blank">LeDeR (Learning Disabilities Mortality Review) programme</a> tell us that a man with a learning disability dies 23 years younger than men in the general population, and that a woman with a learning disability dies 29 years younger than women in the general population. The median (when collecting data, this is the middle value, obtained from separating the higher half of the data sample from the lower half) age of death for a man with LD is 59 and for a woman is 56.<o:p></o:p></span></div>
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<span lang="EN-US" style="font-family: "calibri" , sans-serif;">Those ages of course mean that if a person with a learning disability is going to develop dementia the majority will do so as a younger person, and in addition will likely face barriers in:<o:p></o:p></span></div>
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<li><span style="font-family: "calibri" , sans-serif; font-size: 11pt; text-indent: -18pt;">Identifying their dementia (including diagnostic overshadowing, where a person’s dementia symptoms are written off as learning disability ‘behaviours’)</span></li>
<li><span style="font-family: "calibri" , sans-serif; font-size: 11pt; text-indent: -18pt;">Receiving a timely diagnosis (including difficulty accessing memory clinics and other specialist dementia services).</span></li>
<li><span style="font-family: "calibri" , sans-serif; font-size: 11pt; text-indent: -18pt;">Being offered treatments (including non-pharmacological interventions, like music therapy and life story work, which a person with a learning disability may never experience).</span></li>
<li><span style="font-family: "calibri" , sans-serif; font-size: 11pt; text-indent: -18pt;">Accessing age-appropriate, specialised care and support.</span><span style="font-family: "calibri" , sans-serif; font-size: 11pt;"> </span></li>
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<span lang="EN-US" style="font-family: "calibri" , sans-serif;">I don’t know what happened to Kathy. My dad left the care home they shared on a cold March night by ambulance with an aspiration pneumonia that he never recovered from. He became a subject of safeguarding, and we went to clear his room shortly afterwards, the last time I saw Kathy. Her health, like my dad’s and everyone else’s, had deteriorated, she’d been hospitalised for bowel blockages and other stomach related issues, was immobile, and much of her spirit and communication abilities had become lost in the constant upheavals that characterised her life. The care home went on to be rated inadequate by CQC and has now closed.<o:p></o:p></span></div>
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<span lang="EN-US" style="font-family: "calibri" , sans-serif;">Kathy had a life, but not the life she could or should have had, something far too many people with a learning disability experience. I’ve seen both sides of how we support people with a learning disability and dementia, and my appeal to anyone designing care and support services for our ageing learning disability population is to utalise best practice - it’s out there, <a href="https://www.macintyrecharity.org/our-expertise/dementia/" target="_blank">shared by MacIntyre</a> and others for all to learn from. It’s replicable, it’s achievable, and most of all it’s inspirational, because if we can get support for a person with a learning disability and dementia right, we can improve how <u>everyone</u> lives with dementia.<o:p></o:p></span></div>
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<span lang="EN-US">Until next time...</span></div>
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<span style="mso-bidi-font-family: Calibri;"><span style="font-family: "calibri";"><span style="font-family: "calibri";"><span style="font-family: "calibri";"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgsOI0iIn3PacRD2fega0JbUk0-IzyWXIPF6blh3Z-oyEiztOjQJXcVg53N4U502C4LdpzAgxKBQMJBttzEjtaiO0qopfMUQGw2KilN_JSbqu0tPpm-fzQvA2cumDnoaA7R4M4Qy6QFgERd/s1600/01signature.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img alt="Beth x" border="0" height="98" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgsOI0iIn3PacRD2fega0JbUk0-IzyWXIPF6blh3Z-oyEiztOjQJXcVg53N4U502C4LdpzAgxKBQMJBttzEjtaiO0qopfMUQGw2KilN_JSbqu0tPpm-fzQvA2cumDnoaA7R4M4Qy6QFgERd/s200/01signature.jpg" title="Beth x" width="200" /></a></span></span></span></span></div>
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<span style="font-family: "helvetica neue"; font-size: 14.666666984558105px;"><br /></span><span style="font-family: "helvetica neue"; font-size: 14.666666984558105px;">You can follow me on Twitter: <a href="https://twitter.com/bethyb1886" target="_blank">@bethyb1886</a></span><br />
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<span lang="EN-US" style="font-family: "calibri" , sans-serif;">*Name changed to protect identity.<o:p></o:p></span></div>
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<span lang="EN-US" style="background-color: #fefffe; color: black; font-family: "calibri" , sans-serif; font-size: 11pt;">**</span><span style="font-family: "calibri" , sans-serif;"><span style="font-size: 14.666666984558105px;">September 2017 saw the launch of the <a href="http://www.dementiaaction.org.uk/joint_work/dementia_and_seldom_heard_groups" target="_blank">Dementia Action Alliance's (DAA) 'From Seldom Heard to Seen and Heard' Campaign</a>. The campaign focuses on people living with dementia and their families from six communities who are often marginalised from services and support: Lesbian, Gay, Bisexual and Transgender + (LGBT), Black, Asian and Minority Ethnic (BAME), Young onset dementia, The prison population, People living in rural communities and People with learning disabilities.</span></span><br />
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<span style="font-family: "calibri" , sans-serif;"><span style="font-size: 14.666666984558105px;">I'm <a href="http://www.bethbritton.com/news/06-070813DAA.htm" target="_blank">a national member of the DAA</a>, and proud to have worked with the team in developing this campaign, mostly by utilising my extensive knowledge and experience of working with people who have a learning disability and dementia. I wrote about <a href="http://d4dementia.blogspot.com/2017/10/why-culture-matters-in-dementia-care.html" target="_blank">BAME communities</a> in my October 2017 blog, and <a href="http://d4dementia.blogspot.com/2018/03/living-with-dementia-in-rural-community.html" target="_blank">people who are living in rural communities</a> in my March 2018 blog.</span></span></div>
Bethhttp://www.blogger.com/profile/09727279217918012517noreply@blogger.com0United Kingdom55.378051 -3.4359729999999912.203021 -86.05316049999999 90 79.18121450000001tag:blogger.com,1999:blog-3778521335346901337.post-57843356404467105322018-06-11T09:00:00.000+01:002018-09-19T15:37:13.916+01:00The forgotten workforce<div class="Body" style="border: none; font-family: Helvetica; font-size: 11pt; margin: 0cm 0cm 0.0001pt;">
<span style="font-family: "calibri" , sans-serif; font-size: 11pt;">In all of the meetings I’ve attended about unpaid carers in the 6+ years since my own caring role for my dad ended, the most common themes have been: A) How do we identify carers? And B) How do we assess carer’s needs? The end result of the latter is generally to offer respite, somewhere along the line a leaflet (or a whole pack of leaflets) might be given, and possibly there'll be some signposting to a charity who are running a local carers group. Box ticked. Job done.</span></div>
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<span lang="EN-US" style="font-family: "calibri" , sans-serif;">What a contrast to the paid care and support workforce, who in England need to complete the Care Certificate (which is comprised of 15 standards) and regularly update themselves in mandatory training topics such as health and safety, infection control and manual handling. In addition, all good care providers offering specialist support for people with dementia, learning disabilities and other complex conditions will provide in-depth and on-going training to support their staff. <a href="http://d4dementia.blogspot.com/search/label/DAW2018" target="_blank">Only last month for Dementia Awareness Week, I blogged about the training and mentoring I provide to health and social care staff</a>.<o:p></o:p></span></div>
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<b><span lang="EN-US" style="font-family: "calibri" , sans-serif;">Two roles, one huge discrepancy<o:p></o:p></span></b></div>
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<span lang="EN-US" style="font-family: "calibri" , sans-serif; font-size: 11pt;">With this huge discrepancy in the levels of training and support provided, you might think that paid care and support workers and unpaid family carers (or you may prefer another term like ‘care partner’, ‘caregiver’ or ‘supporter’ </span><span lang="EN-US" style="font-family: "calibri" , sans-serif; font-size: 11pt;">- </span><a href="http://d4dementia.blogspot.com/2015/05/think-about-dementia-words-that-you-use.html" target="_blank"><i><span lang="EN-US" style="border: none; font-family: "calibri" , sans-serif; font-size: 11pt;">I know from everything I’ve done to promote appropriate dementia language </span><span lang="EN-US" style="border: none; font-family: "calibri" , sans-serif; font-size: 11pt;">that </span><span lang="EN-US" style="border: none; font-family: "calibri" , sans-serif; font-size: 11pt;">words matter</span></i></a><span lang="EN-US" style="border: none; font-family: "calibri" , sans-serif; font-size: 11pt;"><i>)</i> </span><span lang="EN-US" style="font-family: "calibri" , sans-serif; font-size: 11pt;">have </span><span lang="EN-US" style="font-family: "calibri" , sans-serif; font-size: 11pt;">very different roles, but not so. Unpaid carers/care partners frequently undertake all of the elements of care and support that paid care and support workers do, but mostly in highly unsuitable domestic homes that are ill-equipped to support a person with high dependency needs, and with the additional and extremely complex element of the emotional ties that they have to the person who needs care and support.<o:p></o:p></span></div>
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<span lang="EN-US" style="border: none; font-family: "calibri" , sans-serif; font-size: 11pt;"><span style="border: none;">An estimated 6.5 million people in the UK do this for a family member or friend who has a disability, illness, mental health problem or who needs additional help as they age. I<span style="border: none;">magine if we had <span style="border: none;">6.5 million <span style="border: none;">paid <span style="border: none;">care and support staff working for <span style="border: none;">home care agencies, care homes <span style="border: none;">and the like who had never been trained in any aspect of their role and were relying on guidance from a leaflet or their own internet research <a href="https://carers.org/article/online-training-dementia-carers" target="_blank">(for free online courses such as these)</a><span style="border: none;"><span style="border: none;">. There wo<span style="border: none;">uld be uproar. As it is many </span></span></span></span></span></span></span></span></span></span></span><span lang="EN-US" style="border: none; font-family: "calibri" , sans-serif; font-size: 11pt;">professionals don’t receive </span><span lang="EN-US" style="border: none; font-family: "calibri" , sans-serif; font-size: 11pt;"><span style="border: none;"><span style="border: none;">edu<span style="border: none;">cation <span style="border: none;">to the extent <span style="border: none;">required for their role <span style="border: none;">when they<span style="border: none;">’<span style="border: none;">ve <span style="border: none;">had training!</span></span></span></span></span></span></span></span></span></span></div>
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<span lang="EN-US" style="border: none; font-family: "calibri" , sans-serif; font-size: 11pt;"><span style="border: none;">I know that my blog is read my numerous unpaid carers/care partners who have contacted me either looking for information or advice, or tha<span style="border: none;">nking me for what they have found within my 200+ posts. A few more may find my blog in the days ahead, as its <a href="https://www.carersweek.org/" target="_blank">UK Carers Week 2018</a>, and whilst I’m very happy that I can provide help and support, it is a damming indictment that in 2018 there is no formal training <span style="border: none;">programme for this 6.5 million strong forgotten workforce.</span></span></span></span></div>
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<span lang="EN-US" style="border: none; font-family: "calibri" , sans-serif; font-size: 11pt;"><span style="border: none;">It seems <span style="border: none;">that <span style="border: none;">the discrepancies between paid and unpaid caring are considered ok because unpaid caring hap</span></span></span></span><span lang="EN-US" style="border: none; font-family: "calibri" , sans-serif; font-size: 11pt;">pens behind private front doors, </span><span lang="EN-US" style="border: none; font-family: "calibri" , sans-serif; font-size: 11pt;"><span style="border: none;">and if you’ve no idea what you’re doing no one cares until a <span style="border: none;">crisis occurs and you rock up at A&E.</span></span></span><span lang="EN-US" style="border: none; font-family: "calibri" , sans-serif; font-size: 11pt;"><o:p></o:p></span></div>
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<b><span lang="EN-US" style="border: none; font-family: "calibri" , sans-serif; font-size: 11pt;">Education – the key to remaining healthy and connected</span></b><b><span lang="EN-US" style="border: none; font-family: "calibri" , sans-serif; font-size: 11pt;"><o:p></o:p></span></b></div>
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<span lang="EN-US" style="font-family: "calibri" , sans-serif; font-size: 11pt;">The theme of this year’s Carers Week is how we enable carers/care partners to remain healthy and connected. For me, carer breakdown has always been a huge topic - I’ve lost count of the times I’ve said that a person with dementia is most likely to end up utilizing professional care services when immobility or incontinence leave their carer/care partner unable to cope. <o:p></o:p></span></div>
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<span lang="EN-US" style="font-family: "calibri" , sans-serif; font-size: 11pt;">Thinking about immobility for a moment, I’m reminded of a story I was told about a lady who frequently visited a relative in a care home with her husband. Her husband had dementia, and was gradually losing his mobility. His wife was struggling to cope with supporting him to get in and out of the car – care staff spotted this one day and invited the lady to join their next manual handling training. Equipped with that knowledge, the wife was able to safely support her husband and protect her body from the common strains that can leave a carer/care partner unable to provide care and support.<o:p></o:p></span></div>
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<span lang="EN-US" style="font-family: "calibri" , sans-serif; font-size: 11pt;">Regarding incontinence, I often find myself reflecting on the film ‘Still Alice’, when Alice goes to her holiday home with her husband and is caught short trying to find the toilet. Alice and her husband are immensely distressed. From that moment, the seed that goes on to becoming urinary incontinence and potentially double incontinence is sown. Yet with some support to create an enabling environment, Alice can continue to find the toilet independently and remain continent for longer.<o:p></o:p></span></div>
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<span lang="EN-US" style="font-family: "calibri" , sans-serif; font-size: 11pt;">These are just two examples of very small, very simple interventions that can support families to do what most of us would want to do – help our loved one live a good life with dementia or any other condition that they are diagnosed with. But it’s utterly bonkers to think that any family can do that without any education or knowledge - lifelong learning, rooted in the personal experiences of former carers/care partners, for the duration of a carer/care partner’s life is essential. Even when a family member comes from a professional health or care background they often struggle, simply because care and support in a domestic home, when your shifts are 24/7, is about navigating numerous relentless difficulties without anyone to support you.<o:p></o:p></span></div>
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<b><span lang="EN-US" style="font-family: "calibri" , sans-serif; font-size: 11pt;">Knowledge is permanent respite from inexperience<o:p></o:p></span></b></div>
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<span lang="EN-US" style="font-family: "calibri" , sans-serif; font-size: 11pt;">The idea that a family carer/care partner just needs some ‘respite’ to get back on track is, I think, very insulting. Many families don’t want their loved one to go into a care home, or any other respite ‘solution’ temporarily. It’s not a ‘holiday’ for either person – just an upheaval fraught with worry, and a fear that one day the person will go into residential care and not be able to return home. I know that feeling all too well – when my dad went into hospital after we found him collapsed on the floor at home he never entered his front door again.<o:p></o:p></span></div>
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<span lang="EN-US" style="font-family: "calibri" , sans-serif; font-size: 11pt;">I’m sure that with the Carers Week theme of keeping carers/care partners healthy and connected there will be a lot of focus on areas like carer health checks, drop in clinics, social support groups and the like. But <b><u>I know from my experiences with my dad that there is no substitute for knowledge.</u></b> If there was, we wouldn’t set so much store by sending our children to school for the best part of 13 years of their young lives (and often far longer in higher education). And if the knowledge I’d gained as a carer/care partner was superfluous and insignificant, I wouldn’t have started this blog to share our experiences to help other families (and D4Dementia wouldn’t be so widely read).</span></div>
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<span lang="EN-US">Until next time...</span></div>
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<span style="mso-bidi-font-family: Calibri;"><span style="font-family: "calibri";"><span style="font-family: "calibri";"><span style="font-family: "calibri";"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgsOI0iIn3PacRD2fega0JbUk0-IzyWXIPF6blh3Z-oyEiztOjQJXcVg53N4U502C4LdpzAgxKBQMJBttzEjtaiO0qopfMUQGw2KilN_JSbqu0tPpm-fzQvA2cumDnoaA7R4M4Qy6QFgERd/s1600/01signature.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img alt="Beth x" border="0" height="98" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgsOI0iIn3PacRD2fega0JbUk0-IzyWXIPF6blh3Z-oyEiztOjQJXcVg53N4U502C4LdpzAgxKBQMJBttzEjtaiO0qopfMUQGw2KilN_JSbqu0tPpm-fzQvA2cumDnoaA7R4M4Qy6QFgERd/s200/01signature.jpg" title="Beth x" width="200" /></a></span></span></span></span></div>
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<span style="font-family: "helvetica neue"; font-size: 14.666666984558105px;"><br /></span><span style="font-family: "helvetica neue"; font-size: 14.666666984558105px;">You can follow me on Twitter: <a href="https://twitter.com/bethyb1886" target="_blank">@bethyb1886</a></span><br />
<span style="font-family: "helvetica neue"; font-size: 14.666666984558105px;"><a href="https://www.facebook.com/D4Dementia/" target="_blank">Like D4Dementia on Facebook</a></span>Bethhttp://www.blogger.com/profile/09727279217918012517noreply@blogger.com0United Kingdom55.378051 -3.4359729999999912.203021 -86.05316049999999 90 79.18121450000001