On October 30th I attended an awareness session run by the Alzheimer’s Society, and I became a Dementia Friend. The Dementia Friends programme has Department of Health backing and aims to involve a million people so as to create dementia friendly communities throughout England. The awareness session I attended was well run, enjoyable and worthwhile, I felt. On that basis I can thoroughly recommend the programme. However, for me some questions remained unanswered.
We were particularly lucky with our presenter, who was experienced in healthcare. She pointed out that not all the presenters of these awareness sessions have this background.
After introductions and sharing some of our experiences of dementia, we took part in an exercise in imagining what it is like to have dementia. We were invited to imagine travelling to a party and having a great time, but then the next morning waking up in a ditch, without any memory of where we were or how we had got there. How would we feel? What would we do?
Reactions varied from the practical — finding a police station, a train station — to the emotional — confusion, despair. I suggested that I might feel angry, but then I realised that I might not even remember who to be angry with. It was a good, thought-provoking exercise.
The trouble is, it encouraged us to think about dementia as a sudden catastrophic event, when in reality it’s a gradual progression. Initial mild symptoms can take a long time to develop into profound disability, and I’m not even certain whether profound disability is inevitable.
I asked whether dementia progresses slowly in some people and fast in others, but I didn’t get a clear answer.
In another exercise we were invited to list the steps involved in making a cup of tea, imagining the difficulties that might be faced by someone with dementia. Again, the feeling in the group was that we were being asked to imagine the worst. We might not be able to find the kettle. We might not be able to recognise that plastic thing as a kettle. We might not remember where the tap is. We might not be able to turn the tap on (if it’s an ultra- modern tap and we can only remember the taps of our youth). We might forget to turn the tap off. And so on.
This was a good, thought-provoking exercise, too. Clearly, anyone with severe cognitive impairments would not be able to make a cup of tea. But then we were told that a third (if I remember right!) of people over 65 have dementia. The implication seemed to be that at the age of 65 one in three people suddenly become so catastrophically impaired that they cannot even make a cup of tea.
Again, the narrative was that dementia is a sudden catastrophic event. In reality, many of those one in three people who have dementia are much older than 65. Some of them, at least, although they may have a diagnosis, are not yet so cognitively impaired that they cannot make a cup of tea. And some of them never will be.
Treatment and support
Another difficult area turned out to be treatment and support. The idea is often put about that it’s important to have memory problems investigated, because an early diagnosis of dementia allows treatment and support to be made available.
This simple narrative conceals a very complex reality. For a start, dementia is the result of many distinct diseases. Alzheimer’s disease is only the most common of them. So it’s not clear that treatment would be the same, or would be equally effective, in all cases.
Then there are many other conditions, some of them treatable, that don’t cause dementia at all — they just cause some symptoms that can look a bit like early dementia. Faulty vitamin B12 metabolism is one example, and it can often be managed with regular vitamin B12 injections.
And some memory problems that are commonly assumed to indicate early dementia might just be part of the normal ageing process, according to a recent University of Virginia research study.
There are several drug treatments in use for dementia, but although our presenter was able to rattle off the names of some of the drugs, she wasn’t able to say how well they worked. Someone in the group said that a family member with dementia was on medication that seemed to make the quality of her life much worse, without helping her dementia in any obvious way. Another said that a family member who had received drug treatment for dementia had soon suffered severe and unexpected side-effects.
Other feedback from the group suggested that GPs are reluctant to prescribe medication, and that getting a diagnosis does not mean that support is readily available. (I wondered whether this is because medication and support are only seen as appropriate when the condition has become severe.)
The purpose of support wasn’t very clear. It was suggested that if someone can’t manage all the steps required to make a cup of tea, then it’s important to help them with those steps while still involving them in making the tea. Otherwise they may lose other skills.
I’m not sure I buy this. I can remember a time when, as a boy, I wasn’t able to make a cup of tea and it didn’t bother me one bit. And I know of an elderly gentleman with severe dementia who almost certainly hasn’t been able to make a cup of tea for years, and it doesn’t appear to bother him either. For someone who’s frustrated by not being able to make a cup of tea it’s a different, and more difficult, matter. But frustration at not being able to do the things one could once do is not unique to dementia.
All these factors make the early diagnosis equation very difficult to solve.
The million Dementia Friends
We were told that 500,000 people have taken part in the Dementia Friends programme so far — half way to the target million. But, according to the website when I logged in today, there are really only 9,338 of us.
This might partly be the fault of the website. When I originally tried to sign up it didn’t work. I couldn’t log in. When I tried to register again it said I was already registered. When I tried to log in it said I had to register first. I used the contact page to complain, and it was sorted out quickly, but the reply implied other people had had the same problem.
The difference between the 500,000 and the 9,338 might also be in part that a lot of people have attended awareness sessions, but very few have done battle with the website and registered formally. That was certainly true of the session I attended, where I was the only person registered on the site.
Communities and pledges
Not a lot of attention was paid to creating dementia friendly communities. Everyone in the group seemed to live in a friendly community where neighbours know each other and there is the potential, at least, for someone with dementia to be supported informally.
But in a community that’s not like that, it’s not clear how to get there. Smiling at neighbours was suggested as a way forward, but this didn’t seem to me to be a terribly well researched plan.
We were all asked to make pledges for further action, and we wrote them down on little bits of paper. I also registered mine on the website. It’s to promote awareness of dementia in the 2gether Trust’s Council of Governors.