Why dementia sufferers have something to sing about

More of us are sharing our experiences of this disease, and fresh ideas are gaining ground

Enormous courage: Prunella Scales and Timothy West in happier times Photo: Srdja Djukanovic

 

By Joan Bakewell

6:15AM GMT 20 Dec 2014

From what I know, many people suffering from dementia will be singing carols loud and clear this Christmas, and getting a great deal of pleasure from it. Music and good company is what helps makes life easier. Earlier this week I presented a programme on Radio 4 called Suppose I Lose It (repeated tomorrow at 5pm), prompted by worries that, with my memory failing me from time to time, I might be in the early stages of dementia. I went on the trail of what dementia means for people today – and what can help us all deal with it.

We change throughout our lives. Mostly we don’t notice, or take it for granted. Women scrutinise the mirror for wrinkles from their mid-twenties, but however much Botox and age-defying cream they use, the changes wrought by time will eventually have their way. Men notice their midriffs starting to bulk up and that they aren’t as fleet of foot as they once were. The inevitability of change comes all the more forcibly as you get older.

Most people nowadays know someone with some form of dementia. I have several friends who are on the dementia spectrum: some early onset, others further along the way. One of them is the actress Prunella Scales, who was courageous enough to talk on the programme about her condition. The impact of what she and her husband, the actor Timothy West, had to say is proving to be important. Ever since the programme I have been inundated with emails and tweets expressing admiration for them, but also joining in the debate about how we should treat dementia sufferers.

Messages and reports are reaching me from, among other places, Edinburgh, Manchester and Fife. I am told that the herb Huperzia serrata has properties that can help: I look it up on the web and find it marketed as “Anti-Alzheimer’s Disease”. More seriously, I hear from a medical herbalist in Reading who believes that it “promises to hold much benefit in the delay and early onset” of dementia. Unfortunately, she can’t get funding for a rigorous scientific study because the relevant bodies in this country tend to steer clear of medicinal herbs.

I hear from Manchester, where I’m told university work is progressing on a generic drug, licensed for shingles but not, so far, for Alzheimer’s. An application for trials was turned down by the Medical Research Council, despite, my correspondent tells me, favourable referee reports. I myself am in no position to judge, but I’m impressed that new thinking is going on around the subject.
I also hear from a man called Peter, who, after a career in clinical psychology, was diagnosed at the age of 76 with “early, very mild Alzheimer’s disease”. He took a positive attitude to living well with it and went on to pass a degree-level module in Italian at the Open University, and become one of the Alzheimer’s Society’s research volunteers. Then I am sent a booklet called Rethinking Communication, written by two dementia psychologists about what they call “adaptive interaction”, and how it can bring comfort to those locked away in silence. I see a video on Facebook that bears this out. Clearly there is much going on among sufferers, their carers and those struggling to research how the condition can be ameliorated.

What I realise from all these responses is the need for society as a whole to become more open and understanding of dementia, to embrace its sufferers within the community and not leave them isolated and alone. One town that is becoming dementia-friendly is Crawley. Training is offered to bus drivers, shopkeepers and waiters about how to relate to those with the condition. Dementia sufferers are invited to schools to talk to the children. We need more of this: more engagement, more social and personal commitment. And above all more political will.

Source: http://www.telegraph.co.uk/news/health/elder/11305141/Why-dementia-sufferers-have-something-to-sing-about.html