Unforgettable contributing editor Kate Corr and author of A Family Guide to Dementia, shares a few of her favourite books about dementia
I’ve been reading books about dementia for at least 15 years. At first, I read purely out of self-interest; my mum had dementia and I wanted to understand more about the condition and work out if mum’s behaviour was ‘normal.’ But mostly, I wanted to prepare myself for the worst.
These were pre-amazon day; perhaps you remember them? Back in 2002 most people who wanted a book about dementia would have to walk into an actual bookstore, scour the health/self-help sections and hope for the best. Almost every book I found during these early searches was American, written in a style that didn’t fully resonate and used expressions such as ‘care giver’ which at the time sounded quite odd. Nor could they shed any light on the practical issues I was facing. None, for example, could explain what an EMI nursing home was, or tell me why it was so difficult to get a prescription for Aricept. But I read them anyway, desperate for any nuggets of wisdom they may offer about Mum’s increasing distressing behaviour. I did eventually find one or two, that helped, including a book about sundowning (now out of print) but not much more than that.
When Mum died in 2007 I didn’t think I’d ever want to read another book about dementia again. Frankly, I’d had enough of it. But the following year a book called Contended Dementia was sent to me to review as a health journalist. I hesitated, not sure I wanted to ‘go there’ again but curiosity finally got the better of me, I picked it up and started to read. A strange thing happened, whilst this ‘innovative new approach’ to dementia care would not be of any practical use to me now, it proved surprisingly useful in other ways. Reading about the SPECAL approach to dementia brought comfort; it confirmed that some of the little things I’d instinctively done for mum, such as not correcting her mistakes, not asking too many questions, understanding that her feelings were more important than facts, might have helped her…and that knowledge helped me.
Years later, I have continued reading books about dementia and I’m delighted by how rich and varied they have become. Families today have a huge variety of impressive self-help books to choose from, there are also many humbling and inspiring memoirs written by carers and people living with dementia. There’s an increasing amount of beautifully written fiction too, a sign perhaps that the stigma of dementia is gradually being eroded; that dementia itself is becoming decidedly more mainstream, which is good news indeed.
And Still The Music Plays by Professor Graham Stokes
Watching The Leaves Dance by Graham Stokes
Graham Stokes is a clinical psychologist with more than 25 years experience in dementia care. He writes with warmth, compassion and great insight into the human experience of dementia. ‘There is a need to give dementia a human face,’ he says, and that’s exactly what he does in these two volumes of short, compelling stories about real people with dementia. Professor Stokes likens his work to that of a shrewd detective. By thinking deeply and learning as much as he can about the lives of the people he’s asked to help, he begins to work out why they might be exhibiting behaviour which seems puzzling, disturbing, upsetting or downright bizarre to anyone on the outside. He always succeeds…but these are not self- congratulatory books, they’re written with humility and respect for everyone dealing with dementia and they offer hope, when there seems very little to be hopeful about. I’d recommend them to anyone who is currently caring for a loved one with dementia or who just wants to understand more about dementia
Elizabeth is Missing by Emma Healey
Maud has dementia but is determined to find a missing best friend, this is an utterly realistic portrayal of dementia and it’s also extraordinarily clever.
We Are Not Ourselves by Matthew Thomas
An engrossing family saga about three generations of an Irish American family, one of whom, Ed, is a neuroscientist who develops early on-set dementia. Beautifully written.
The Corrections by Johnathan Franzen
A critically acclaimed novel about an elderly couple, Enid and Alfred (who has Parkinson’s Dementia) and how they and their three adult children cope when Alfred’s dementia worsens.