Wednesday 20 May 2020

D4Dementia has moved!

Please visit:

If you subscribe to my blog, please re-subscribe on the new website, thank you.

Monday 20 April 2020

Coronavirus and being isolated from a loved one

Last month I wrote about the coronavirus pandemic and answered two questions families supporting a loved one are grappling with: How do we hand-wash more and how do we self-isolate?

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. 

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.

Fears for a loved one in a care home

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. 

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.

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.

The pain of separation 

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. 

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.

Ways to keep in touch with your loved one when you are apart

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.

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. 

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.

Practical things you can do for your loved one

If you are wanting to do something more for your loved one than just keeping in touch, these would be my top three suggestions:
  • Make a life story 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 cushion created for a gentleman who was missing his late wife. And don’t wait until you see your loved one to give them your life story gifts - research an affordable door-to-door courier (examples here) and make it a lovely surprise for your relative to open during this lockdown.
  • Make a playlist. If you know the music your loved one enjoys, begin a playlist for them. If you are unsure of some details, liaise with staff and make it a three-way remote project between yourself, your loved one and the care worker(s) supporting them.
  • 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.
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.

Next month I will continue to look at the issues raised by the coronavirus pandemic. Until then:
  • Keep safe
  • Stay at home
  • Keep your distance from others
  • Look after yourselves
  • And stay well.
Beth x

You can follow me on Twitter: @bethyb1886
Like D4Dementia on Facebook

Monday 23 March 2020

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 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.
Beth x

You can follow me on Twitter: @bethyb1886
Like D4Dementia on Facebook

Monday 24 February 2020

Who is really challenging?

As regular readers of D4Dementia will know, I’ve long been a supporter (including through the National Dementia Action Alliance Campaign 'Dementia Words Matter'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, it's about more than just words.

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.

Trouble with the language

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 Kate Swaffer's blog for more information on this terminology).

The only good thing to come from this book-reviewing experience was the opportunity to signpost the publishers to the gold-standard in dementia language guidelinesa 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.

My language benchmark

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:
  • Would I be happy to say what I’m going to say to the person directly?
  • Would I be happy for the person to read what I’m going to write about them?
  • 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)
And perhaps most crucially of all:
  • If I was this person, would I be happy to be spoken or written about using the words I’m thinking of using?
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.

Do you still use the term 'challenging behaviour'?

Perhaps the most divisive terminology that I still see is ‘challenging behaviour’, which was brilliantly addressed in a blog Wendy Mitchell wrote 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:
“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….”
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.

Reframing words, thoughts and actions

Reframing thinking by saying it’s 'changed behaviour' (or 'Changes associated with dementia' 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.

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. 

Rise to the challenge to change practice

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: 

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.

Until next time...
Beth x

You can follow me on Twitter: @bethyb1886
Like D4Dementia on Facebook

Monday 20 January 2020

Bothered and bewildered by the portrayal of dementia

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.

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.

My biggest gripe against the Oscar-winning Still Alice 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.

My interest in the portrayal of dementia in the arts was ignited again last November when I went to see 'Bothered and Bewildered', one of the numerous stage plays focusing on dementia. The official synopsis of ‘Bothered and Bewildered’ says:
"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."
Comedy and dementia

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.

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. 

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 look beyond what you're seeing to consider the reasons behind why a person is doing what they are doing and suddenly you think very differently. 

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.

Supporting family carers

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.

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. 

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.

What needs to change

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.

In January 2020, every person with dementia and their family still cannot access universal, comprehensive post-diagnosis support, nor do they have access to their own Admiral Nurse, 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.

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.

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 the environmental changes that can make a difference in someone’s home, the meaningful professional support (Admiral Nurses etc) that can enable families to cope better, and (fingers crossed) even progressive initiatives like peer support groups (DEEP and DAI) and training for family carers.

If we could have all of that, with less focus on laughing at the person living with dementia, we’d be making progress. 

Until next time...
Beth x

You can follow me on Twitter: @bethyb1886
Like D4Dementia on Facebook