This week, from May 20 – 26, is Dementia Action Week.
Today the Alzheimer’s Society has a good website home page about it (google Dementia Action Week) with a heading over a photograph that says ‘a child always sees the person inside.’
It’s important, because it’s not always easy to see the person inside. When I first began writing about dementia most people assumed that the person they knew was dying bit by bit, leaving only a shell, which responded automatically but not meaningfully. Which couldn’t be further from the truth! So I wrote my first book, ‘Could it Be Dementia: losing your mind doesn’t mean losing your soul,’ which seemed to hit the spot so well it had three reprints in just a few months. That was in 2008 and the book is still being bought. Since then more and more experts are stating categorically that the person remains.
The challenge is how to reach that person, (that Mum or Dad) and how to enable the person to communicate with us?
Who better to explain that than someone who has been living with dementia for many years and who not only communicates herself, but helps others with the condition to find their voice again, often when they’ve been given up on?
Jennifer Bute was a senior GP in a large Practice and a Fellow of the Royal College of GPs when, 14 years ago, she developed dementia herself. Now living in a dementia inclusive retirement village, she encourages others and often gets them to talk again. She has described how someone with advanced dementia, who normally says very little, suddenly started telling her stories about her childhood that Jennifer hadn’t heard before, after they’d been laughing together. She talks about the the releasing effect of laughter and singing, and how a lady who was stuck, like a gramophone record on the sentence, ‘the peas are green on Saturday,’ returned to lucidity and was able to speak after listening to a Scripture song.
There are ways of getting people to talk, she insists, and she’s described them in the book we wrote together, ‘Dementia from the Inside: a doctor’s personal journey of hope,’ available from our website, https://www.pilgrimsfriend.org.uk/shop/dementia-from-the-inside. (and the usual other places, but when you buy from us you’re helping our work, too!)
The stories are mini case studies. There is so much more in the book. It includes Jennifer’s ‘back story’, which is fascinating in itself, revealing the resilience learnt in tough times and the depth of her relationship with God, but she also speaks as a doctor. She gives practical advice about understanding and helping someone with dementia. Jeremy Hughes, CEO of the Alzheimer’s Society, wrote a commendation saying that everyone should read the book and learn from it.
Perhaps the best action you could do this week is get a copy of the book, either for yourself or for someone you know would benefit from reading it!