Coronavirus and living with dementia - Coping in unprecedented times

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.

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. 

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: STAY AT HOME AND SAVE LIVES. 

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. 

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:

Help! How do we hand-wash more?

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.

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.

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:

• 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. 
• 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.
• 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.

If the person is immobile, try what I used to do with my dad:

• 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. 
• 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.
• 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.

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.

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.

Help! How do we self-isolate?

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:

• 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. 
• 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 Hobbycraft offer home 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).
• 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:
• Join the fabulous Wendy Mitchell for her ‘Web with Wendy’ sessions (the next sessions are 31 March and 2 April). 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....”
• Participate in laughter yoga, designed to put a smile on participants faces during these testing times. Find out more about Everybody Laugh Together on their Facebook page. 
• 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.
• You could also consider modifying some of the things we’ve been asked to do as a family:
• 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. 
• 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.

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:

• Keep safe
• Stay at home
• Keep your distance from others
• Don’t panic buy
• Look after yourselves
• And stay well.

You can follow me on Twitter: @bethyb1886
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Repetition, repetition, repetition

One of the symptoms of dementia that those around the person with dementia find most difficult to cope with is repetition. Families and professionals alike often express frustration, leading onto exasperation, which often ends in irritation and possibly even an argument with the person who has dementia.

Repetition is a very common symptom of dementia. My dad went through a stage of repeating the same questions, and as his communication ability diminished the repetitive questions were replaced by saying the same words or phrases over and over again. To begin with those words or phrases would sometimes bear some correlation to the situation or conversation going on at that time, but as the years went by they became completely random.

The patterns of my dad's repetitive speech often left me wondering what message he was trying to convey to me, and that is arguably one of the most difficult aspects of repetition for the people around an individual with dementia. You desperately want to unravel the meaning behind their words and respond to that with an answer that provides the reassurance they may be looking for, but without being able to move the conversation on the prospect of finding a resolution that gets to the heart of what the person with dementia needs or wants becomes a distant one.

As someone observing a loved one's life with dementia, it is impossible to truly know the impact of repetition on the person who is living with dementia. I would suggest, however, that many of the feelings that a carer is experiencing (frustration, exasperation and irritation) are potentially also being experienced by the person with dementia too. The difficulty for the person with dementia is that they don't necessarily have the ability, either verbally or through physical demonstration (body language or expression), to make those feelings clear. That puts them at a distinct disadvantage to those of us who are family carers or care workers.

It's interesting that as a carer of a person with dementia, the carer's feelings are often seen to be somehow different from the person with dementia, but the emotions that go alongside coping with repetition - as with so many other symptoms of dementia - can be remarkably similar for the person with dementia and those around them, giving us more in common than we often realise.

Developing coping mechanisms is a key attribute for a carer, because so many people simply don't cope well with constant repetition – examples of coping methods include taking a quick ‘time out’ or deep breathing exercises (these may sound trivial, but they do work for some carers). Patience is another key attribute. I’ve never yet seen or experienced a resolution to a person’s constant repetition by losing patience with them. Yes they may have asked what the time is, requested the toilet or questioned when the next mealtime is on 20 occasions already, but getting angry is unlikely to prevent the next 20 requests. Equally, telling the person that they’ve already asked that question or said that statement isn’t likely to help end their repetition because they may very well not remember what they said previously.

Of course it’s easy to say ‘exercise patience’ – repetition can be incredibly mentally draining to both listen to and constantly respond to  – but alongside patience there are other techniques that can be helpful, although I’d stress that as each person with dementia is an individual, what will work well for one person won’t necessarily have an impact with someone else. 

Techniques to try include:

Embedding your response: Persistent questioning about the time can sometimes be resolved by providing a ‘dementia friendly’ clock or similar item, enabling the person with dementia to track time themselves which helps facilitate their independence. Coupling that with a day-by-day board that enables the person to track what is happening when can help with questions about daily events, like mealtimes, whilst good signage can assist with enabling the person to go to the toilet independently without having to ask. However, visual aids only work if the person has good vision and the cognitive ability to absorb what they are seeing, so make sure this is checked – move to audible reminders if hearing is a stronger sense than vision. Likewise, if the person doesn't have the mobility to meet their needs (like going to the toilet), then your help will always be required.

Distraction – Changing the conversation: Some carers successfully use distraction techniques to move the conversation away from whatever the person with dementia is repeating and towards something else. This can work, although sometimes moving away from a topic causing repetition can then mean that wherever you steer the conversation to next will become a topic for repetition.

Distraction - Activity: Introducing an activity, be it something to do with daily living (“Let’s make a cup of tea,” or “Let’s do some housework.”) or a hobby that the person enjoys, can be helpful in taking their mind off whatever the topic is of their repetition. Offering the right activity for the moment is key here, and may need to be something more energetic, like going outside or making the bed, or could be something much more sedate, like reading a book together or singing songs.

What I personally wouldn’t advocate is ignoring the person. Some people use this as a technique in the belief that the person with dementia will simply give up the repetition when they don’t get a response, and by responding you only fuel repetition further – a bit like the parenting technique where you leave the child to self-sooth. However, in relation to dementia I dislike this as a technique because apart from anything else it feels disrespectful. It also does nothing to increase the person’s trust in those around them, doesn’t encourage their independence in any way (even though it may be used in the false belief that it does increase independence), doesn’t help to meet any unmet needs that they may have, and runs the risk of something vital being missed.

The risk, when repetition becomes very monotonous and wearing is that a carer becomes so immersed in coping with it that vital clues are ignored, which might result in an episode of incontinence or not recognizing when something is wrong with the person’s health. When repetition takes the form of answering yes to every question asked, or no to every question asked, it might seem reasonable (and easier) to take those answers at face value, but it may simply be that the person is repeating an answer because that’s their current pattern of repetition, rather than because they really intended to give that answer.

This doesn’t mean that the person with dementia is being untruthful, it’s just how their dementia is manifesting itself at that time. Always be alert that an answer on a key issue, like how a person is feeling in relation to their health, should also be accompanied by the carer observing the person to make sure vital opportunities – for example to spot the deterioration of an infection - aren’t missed.

One final key point about repetition is that it is rarely static indefinitely. What is the sole topic of repetition one week can easily change the next week, and sometimes repetition stops as suddenly as it began, in the same way that many dementia symptoms come and go. When all else fails, responding with soothing kindness will at least ensure that you have tried to alleviate any distress being felt, and that you have appreciated the key point that the person with dementia may be feeling just as unhappy about their repetition as you are.

Until next time...

You can follow me on Twitter: @bethyb1886

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Do something new... with technology

Welcome to the third of my seven blog posts for UK Dementia Awareness Week 2015.

This year's Dementia Awareness Week centres around the theme of doing something new for people with dementia, under the mantra that ‘Life doesn’t have to end when dementia begins’. For many people living with dementia in care homes, however, a lack of opportunities to have meaningful occupation and activity, or even just enjoy the simple pleasures that many of us take for granted, can lead to life feeling like it really has ended.

Over this Dementia Awareness Week (DAW2015) I want to look at some of the positive things relatives and staff can do to enhance the lived experience of people with dementia in care homes. They may be new things, or they may be old favourites, but they all share in the ability to turn a boring day into something a little bit more special.

 

Day 3: Technology

The idea of using technology is a controversial one in dementia care. Some care homes embrace iPads, iPods, daily living aids, Skype, monitoring equipment and even GPS, but many more either ignore it completely, or make expensive purchases that are never fully utilised. If you’re in the latter two categories, now may be the time for you to consider doing something new with technology.

Many care providers associate technology with the classic health and safety options of sensors and alerting systems. I’m not saying that sensors that detect motion or devices that alert staff when a person has fallen aren’t great, of course they are and they should be used appropriately for every person who would benefit from them, but for life in a care home to have the richness we all take for granted when we close our own front doors, it’s vital for care providers and families to think about ways to promote independence, creativity, connectedness and fun.

I would never advocate using technology to replace one-to-one human interaction, but there are elements of technology that can greatly enhance the lived experience of people with dementia in care homes. Having a clock designed to help people with dementia find out the day and time can help with orientation and maintaining independence, personal music players like iPods can be a fantastic therapy for alleviating upsetting symptoms, and devices like talking electronic photo albums can provide reassuring visual and audible reminders of relatives when they are absent.

There is also an increasingly strong argument for having Wi-Fi in care homes (providing you also offer access to devices that can use that Wi-Fi!). Once you have an internet connection and a device a world of possibilities opens up, not least with helping residents to maintain connections with relatives far away, and helping staff to get to know those relatives and involve them in the care and support being provided by the care home. Skype is a perfect example of this in action, and some care homes also maintain Facebook pages to share photos and news, all of which has the potential to help bridge intergenerational divides between older people in care homes and the younger members of their families.

As ever though, be mindful that using screens to interact (particularly via Skype or electronic photo albums) isn’t suitable for everyone – some people may find them as upsetting as others find them reassuring. Being person-centred with the support you are providing is vital.

More information, tips and advice on technology can be found in the following D4Dementia blog post:

Getting technical: http://d4dementia.blogspot.co.uk/2013/03/getting-technical.html

Next post on 20 May 2015.
Until then...

You can follow me on Twitter: @bethyb1886

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The corners of your mind

I’m a bit of a fan of all things vintage, as you might have gathered given my love of our older generations. Music is no exception to this rule, hence the title of this blog post coming from a much loved song, ‘The way we were’.

 

 

I’ve always felt that the lyrics to this song are a rather poignant reminder of how life changes through the years. It also has important meanings in relation to our memories, the invisible library that lives within our brain and chronicles our lives. Should dementia ever set in, that library becomes muddled, and eventually toms of knowledge are like books that have been borrowed from the library and never returned. The person with dementia then becomes a bit like a frantic librarian, trying desperately to remember where they have stored the particular segment of knowledge that is required.

I wrote in 'Loving our elders and betters' about how, when an older person dies, "It is as if a library has burnt down." Many people would argue that dementia is like a slow burn, very gradually turning memories to cinders, often initially with little physical evidence of the ‘fire’ taking place. Given the choice I think some people facing such a future would rather experience a giant inferno that engulfs their lives with such rapidity that they have no idea that it has even happened, but dementia is rarely like that.

It teases the mind, allowing us to retain selected memories, often those going back many years, but not always the most useful ones. Those crucial practical memories of how to undertake and successfully complete tasks may go very early, as can memories of what we did or said a minute, hour, day or week ago. The precious memories of key life events, and key individuals in our lives, may also end up being filed under absent.

Being deprived of that last set of memories is particularly painful because they characterise our lives and us as individuals. They act as a safety blanket, giving us a place to meander into during those quiet moments of reflection, or provide thoughts of positivity and strength when we are feeling vulnerable or worried. We want to be able to remember people, places and things that are important to us, knowledge we have studied hard to acquire or experiences we want to be able to pass on, but dementia has other ideas.

Memory problems are something we generally – and wrongly - associate with ageing, as I wrote about here. Moreover, I think that throughout our lives many of us are guilty of taking our own memory for granted, and in our interactions with others we readily expect their mind to perform with seamless speed and accuracy. We don’t have time or patience for a hunt around someone else's personal library – we want our information instantly, and not being able to deliver that often leads to the belief that someone is unintelligent, useless, worthless or stupid.

However dementia, and the way in which it can affect our memories, can hit anyone and not just in old age. Having a previously brilliant brain is no guarantee that you won’t get dementia. I’ve met leading doctors, academics and businessmen who are living with dementia – all had hugely admired brains that have now been ravaged. My dad, whilst never a man of high academic standing, had a truly impressive mind – his knowledge of the countryside, farming and animals was second to none. His wisdom was a gift that as a child I never really appreciated. Now it’s gone, I miss it more than words can say.

The corners of our minds harbour things that we may think we will never need, but each memory has its place and importance and being without any of them will adversely affect our lives at some point. We talk a lot about memory ‘loss’ in dementia like it is something that can be found again. Sadly even for people who achieve respite or improvement from their symptoms through therapeutic interventions, they are still living with a terminal disease that is characterised by eventual decline.

What I admire most, however, is the way in which many people with dementia try to guard against this, always working to prevent dementia steeling more books from their memory library. I think as outsiders looking in, we often don’t realise just how hard people with dementia try in order to maintain normality and keep all of those important memories alive. For many, notebooks and post-it notes become their allies – the feeling being that what cannot be remembered must be written down.

Increasingly I think technology (smartphones, tablets and other handheld devices) will have a role to play, particularly for people who are diagnosed with younger onset dementia and are already used to leading very technological lives. However, I think nothing will ever really beat our loved ones for helping to keep memories alive and effectively providing a 'Back Up Brain'* for us all, regardless of whether we develop dementia or not.

Dementia has the power to literally re-write and remove our memories, twisting, confusing and manipulating those precious nuggets of understanding and experience that we build up over our lives. As the song tells us, "Memories may be beautiful and yet, what’s too painful to remember, we simply choose to forget." Having that choice is a wonderful thing that we should never take for granted. 

Until next time...

You can follow me on Twitter: @bethyb1886

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*Back Up Brain – BUB –  is a phrase borrowed from my inspirational friend Kate Swaffer, an Australian lady living with young-onset dementia for whom her husband is her primary BUB. I would recommend checking out Kate’s blog http://kateswaffer.com/daily-blog/.

Join the debate

Back at the start of 2013 I published a blog detailing My Dementia Wish List for the year. Ten months later seems an appropriate time to revisit some of these goals and, looking forward to the G8 Dementia Summit in London in December, explore some of the key issues in the world of dementia right now.

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CARE


How do we improve care for people with dementia?

By providing care that is person-centred, dignified, respectful, understanding  and compassionate. By offering people with dementia the chance to achieve, promoting their independence, ensuring that we always involve the person and seeing their abilities before their disabilities.

How do we support family carers more?

Listen to carers and find out what they need as individuals. Don’t employ a one-size-fits-all model. Ensure all support is family and relationship centred, and recognise family carers as a vital part of the 'CareForce'.

Do we need more specialised training?

It is vital that we offer high-quality, specialised dementia training to both professionals and family carers alike to engender a new breed of 'CareForce'. With the right training we can empower the people on the frontline of care - in homes, care homes and hospitals - with the skills and understanding that they need to support people with dementia.

Is early diagnosis the key for families facing dementia?

Timely diagnosis (diagnosis that is at the right time for the individual and their family), with good support mechanisms in place to ensure that the person with dementia and their family can ‘Live well with dementia’ is the ideal.

How do we ensure people ‘Live well with dementia’?

By putting the person with dementia and their family at the heart of joined up health and social care. Supporting, caring, loving and living with dementia as a team effort within a dementia friendly community.

How can we learn from best practice in the UK and worldwide?

Research good practice, collate that and share it. Be bold enough to highlight what we do well, and equally speak up when care is not what it should be.

How do we improve end-of-life care for people with dementia?

By looking at what individuals want. Encouraging as much forward planning as possible, and having the care and support in place to ensure that those wishes are met with the utmost dignity and respect.


COMMUNITY AND SOCIETY


How do we make our communities more dementia friendly?

By investing in educational, awareness raising initiatives amongst all age groups, crucially promoting the point that dementia friendly communities are good for everyone. We must build on Dementia Friends and some of the great local projects that are proving very successful and share their best practice. It is also vital to ensure that commitments to being dementia friendly are met by every locality to avoid a postcode lottery.

Can stigma be defeated?

I believe it can. So many other highly stigmatised diseases and conditions have managed to emerge from the shadows. Dementia can be the next one.

How to we increase awareness?

Talk about dementia. Listen to personal experiences. Provide platforms to share. Be open and honest. If everyone touched by dementia made a commitment to speak about it to someone with no knowledge, awareness would transformed.


RESEARCH


How do we improve treatments?

Through increased research, more documented evidence of what is working in practice and the sharing of good practice, innovation and intelligence. Ultimately, however, a good treatment for any individual is about finding what actually works for them, not what is supposed to work for them.

What options are there aside from drugs?

Examples of therapeutic non-drug treatments that have been shown to alleviate dementia symptoms include music, art, dance, reminiscence, aromatherapy, massage, exercise, yoga, light therapy, cooking, gardening, sensory therapy, sculpture, animal therapy, poetry etc. The list is endless, but it’s about finding what is right for each individual.

How do we prevent dementia?

With over 100 different forms of dementia, not enough is yet known about each form and how to prevent it. On a general level, following all the well-known advice about healthy diet and lifestyle, regular exercise, and ensuring that you have enough sleep can only be a positive step in trying to prevent a host of illnesses and diseases, including dementia.

Will we ever have a cure for dementia?

Science is advancing. One day maybe we will!


THE FUTURE


Can we cope with the predicted levels of dementia in the future?

Many of our health and social care systems are already overstretched. Far more capacity needs to be built into these systems in order to fully support people with dementia now and in the future. We will also need to look towards innovation and flexible care models to ensure that we can meet demand for services and expectations of what services should be providing.

Is technology the answer to improving care?

Technology is an increasingly important factor, and for people with young-onset dementia it has a particular interest as individuals in this age bracket are often leading very technology-rich lives at the point that they are diagnosed. Technology undoubtedly has its place, but it must never be seen as a replacement for human contact and interaction.

What can the G8 Dementia Summit produce?

Hopefully a really positive consensus on the way forward for research and care for people with dementia worldwide. It will provide an unprecedented platform on which to discuss the major issues facing professionals and families, and provide a much need focus on a disease that poses one of the greatest challenges to relationships, medicine and care that the world has ever seen.

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This is, of course, just a snapshot of the current picture. Join the debate by adding your comments below.

Until next time...

You can follow me on Twitter: @bethyb1886

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Getting technical

How many times have you forgotten your pin number or tried to work out what an abbreviation in a text message means? How often have you cursed technology for presenting you with what appears to be an insurmountable problem, declaring that we were all better off when we only had pens and paper?

Imagine then if you can only remember a life of pen and paper, and modern technology is an alien concept. For people with dementia, an abbreviation in a text message could remain utterly unfathomable permanently. Having to remember a pin number could end your ability to go out shopping with a card that in theory provides access to your money, but only if you can remember those magic digits.

As dementia progresses, telephone calls can become problematic because you need visual clues to be able to communicate to the best of your ability. Even trying to operate a TV remote can leave you frustrated and bewildered – so many channels, so much choice… maybe too much choice. The world can become an increasingly isolating and unfamiliar place when your mind no longer helps you to process information that the rest of us take for granted.

Many of these problems stem from living in a faceless society. We communicate less and less in person – if an email or text message will suffice it is often quicker and easier. We use numbers to keep our cards secure when once a simple signature would have been all that was needed to purchase goods. Many shops now expect you to serve yourself when you want to buy something. We are encouraged to bank online, but again this involves remembering the right answers to get through the security. Even making a phone call regarding a service can leave you wading through those dreaded selection menus, unsure of which button to press – if you can even recall what all the options were.

How do people with dementia cope? The answer is with great difficulty. If you are fortunate enough to have a loved one caring for you, much of the burden of running the affairs in your life (be they financial, social, or simple household matters) will, over time, fall to them, which in the case of financial affairs often means going through the complex processes of Power of Attorney (if you are able to facilitate this). That is not to say that you necessarily want to lose control over your life, just that the systems within our shops and services are not, at present, widely adapted to help people with dementia to remain in charge of their affairs.

Thankfully the Dementia Friendly Communities initiative is involving leading companies in trying to understand how they can modify their systems to help people with dementia. Let’s hope they can grasp the scale of these problems, the debilitating effect they can have on daily life, and find ways to modify how they run their businesses to help people with dementia to keep their independence for longer.

But what about the more basic problems like using the telephone and operating the TV? Making devices simpler is one solution, but ultimately someone with advancing dementia will often come to rely on those nearest and dearest to them to help with their communication and entertainment needs. Proof, if it were needed, that nothing can really beat human contact.

So can technology and dementia ever really be happy bedfellows? You might think that is unlikely, but as awareness of the needs of people with dementia grows, there are plenty of companies looking to innovate products that can provide real 21st century solutions that benefit rather than baffle people with dementia.

Of course they won’t work for everyone – after all the best dementia care is about focusing on the individual and what is right for them. It's also unlikely that one piece of technology in isolation will be useful for a person throughout their entire life with dementia. Nevertheless, I think my dad would have benefited from a little technology in his life, not least a device that could have alerted us when he collapsed at home, and prevented him being left on the floor all night. Equally, technology that could have provided the kind of support and peace of mind that might have kept him living in his own home for longer would have been a plus point.

So, sometimes technology can be a positive thing for people with dementia, and indeed sometimes it is actively embraced by those living with the disease. Take for example how some very inspiring people who are living with dementia are communicating their journey through blogs and social media. It always reminds me that for everyone I meet who tells me they don’t understand social media and "could never blog" there are some people, facing huge challenges with cognition, who find a way to break down those barriers and get their stories out there. For them, getting technical is a lifeline, and for us it means we can learn from the REAL experts in dementia.

Until next time...

You can follow me on Twitter: @bethyb1886

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What makes a dementia friendly community?

When I last wrote about the UK’s dementia challenge I said that we needed to make our country a place where people who are living with dementia can lead the lives they deserve to, rather than the ones foisted upon them by prejudice and ignorance. In practice, this means every community becoming dementia friendly, embracing this most cruel of diseases, and seeing the people who have developed it as an asset, rather than a problem.

It requires a change in attitudes, approaches and opinions that will not happen overnight, and realistically some people will never be convinced by the argument that everyone with dementia deserves to live well with it, rather than simply die from it. However, given the current numbers of people with dementia, and the predicted number of cases for the future, many more lives are going to be touched by this disease than a lot of people may even want to contemplate at the moment, making this the time for the UK to become both more aware of dementia and more friendly towards it.

At every stage of dementia, from pre-diagnosis to end-of-life care, every service accessed by people with dementia and their carers needs to have an intrinsic appreciation of what dementia means, how it affects everyday life, and what can be done practically to make using services easier. For the wider community, it is about adopting the key principles of compassion, dedication and personalisation to ultimately become more dementia friendly.

None of this is achievable without widespread awareness and education of dementia across all generations, from education in schools to campaigns targeting people in their 20’s, 30’s and 40’s whose parents or grandparents may be showing signs of dementia, and finally to supporting people in their 50’s, 60’s, 70’s and 80’s who may have dementia themselves, be trying to look after a partner with dementia, or are concerned about the impact dementia could have on their life if they develop it.

To do this community healthcare services, community groups, social and charitable groups, local and national media, and technology like social media, apps etc need to pull together as one to reach as wide and diverse an audience as possible. Realistic but also positive coverage of dementia that informs people, rather than terrifying them, will prove that this disease is not a black hole of nothing, and that living well with it is an attainable desire for everyone with dementia and their families and friends.

At the heart of all awareness campaigning must be people with first-hand experience of dementia, whether they are currently living with it, caring for someone with it, or have done in the past. I have written previously about harnessing the power of people’s first-hand dementia experiences to appeal to the hearts and minds of the wider population, and that will never be more important than in the quest to make dementia friendly communities. These people are the pioneers who can lead the way in helping the whole country feel as passionately about dementia care as they do. Small seeds of change do already exist within social media, with the Twitter hashtag #dementiachallengers uniting people, like me, in this common goal.

As I have often touched on, whilst I wish my father had never had dementia, his years with it gave us as a family many memories and experiences that changed our lives in a positive way, finding hidden depths to our feelings and resources, and giving us the privilege of supporting a wonderful man in his life with dementia that, whilst he would have hated it, also gave him the opportunity to show great courage, dignity, good humour and warmth in living with it.

Although much has changed since my dad’s life with dementia began, there are still significant barriers for people living with dementia today. Access to services is still very much a postcode lottery, people are often not informed or supported regarding what they are entitled to, there is not enough emphasis on providing therapeutic dementia care (through the arts for example), not enough access to some of the great design and technological advances that can improve the lives of people with dementia and those who look after them, and there are many day-to-day obstacles to overcome. Even a simple trip to the shops, or going out for a coffee, can turn into people staring at you, whispering, being unhelpful, or refusing to make allowances for the needs of someone with dementia, and that is assuming you have the resources to even get out of the house or care home to begin with.

So much can be done to remedy this, however. Organisations can train staff to become dementia aware, not just to assist customers but also as part of the pastoral role good employers should adopt in supporting their staff in their personal lives, recognising that many of their employees will have family, friends or neighbours with dementia who rely on their help. Improving customer advice and liaison roles to encompass helping people with dementia who may be disorientated, confused, aggressive or upset, simplifying signage to help people with dementia to find their way, supporting people with financial transactions, adapting menus to reflect the needs of people who require soft or purred food because of a swallowing problem, and providing toilet facilities that help carers to change incontinence pads in privacy, are just a few simple but important issues businesses can address to become more welcoming for, and understanding towards, people with dementia.

It is not just down to businesses and service providers to make our communities dementia friendly though. If everyone understood dementia, recognised the symptoms in family members, friends and neighbours, and provided a supportive environment where we look out for each other, help with simple tasks, are able and willing to call for professional help when it is needed (and for that help to be forthcoming and appropriate), and took the time to offer kindness, a listening ear, a compassionate touch and a caring outlook, then all vulnerable people, not just those with dementia, would be able to live far more fulfilling lives that offer quality and richness.

Ultimately dementia friendly communities will only exist if there is a shared will between the people, policy makers, media and businesses to make this happen. Creating communities where people with dementia are welcomed, supported and enabled to get the maximum out of life will require flexibility, forward-thinking, huge commitment and above all instilling within our society how valuable people with dementia are.

Recognising the contribution people have made in their lives prior to having dementia, celebrating that, tapping into it and helping them to be as active, healthy and happy as possible during their life with dementia will need the rest of us to show the same courage and determination that my dad, so many before him and so many right now, are showing in battling their own personal dementia challenge.

Until next time...

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