When I was a carer of someone with Alzheimer’s disease, my mother-in-law Nancy, I thought the fact that I’m a natural consumer of printed word, a gobbler of books and print information, would help me with my new role. I went out looking for guidance. Perhaps it was bad luck, but the books I found in my local bookshop were of the kind that reassure a carer that all will be well with the right approach: that, in effect, the happiness or otherwise of the person with dementia comes down to the right kind of handling.
I’ve learned that this is nonsense. Dementias are unlike any other kind of disease in being diseases of Selfhood. The physical progress of Alzheimer’s through the brain, robbing a person first of memory and then of the autobiographical basis of identity, is to blame for the unhappiness that Alzheimer’s brings. It’s often thought that memory is a vault, an archive that we can visit, but the truth is that it’s a process, an orchestral process fuelled by millions of co-operative neurons working together. ‘Self,’ the experience of self, self-knowledge, is likewise a process and not something fixed. It is constantly being made and remade—and so it can be unmade. Consciousness isn’t just about doing and knowing, but knowing that we’ve done and have known.
Keeper is a unique kind of dementia memoir, in interweaving the story of Nancy’s decline, (tracking that steady and shocking decline with anecdotes, with vivid records of conversations between the two of us as Nancy becomes more ill), with a wide-ranging exploration of what Alzheimer’s is, and what it means for us as humans.
Dementia is a ticking time-bomb in our society. A tsunami of dementia is coming our way. There are about 35 million people with one of the 100 or so kinds of dementia, across the world. By 2030 there will be around 65 million. By 2050, the numbers are forecasted to be in the region of 115 million. Where will it end? More importantly, how will it end? In the USA in 2008, $5.6 billion was spent on cancer research, and only $0.4 billion on dementia science.
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Pronouncements about medical advances in identifying and treating dementia—even preventing its onset—are almost daily events in the media, but the truth is that nobody really knows for sure what it is, or where it comes from, or how we can fight it. In the meantime, what’s needed is greater understanding of the devastation that dementia can wreak on sufferers and the families of sufferers.
I hope you find Keeper a stimulating and thought-provoking read, and one that may help anyone who may be caring for a loved one with dementia.
We’re giving away copies of Keeper!
Has your life or the life of someone you know been changed, impacted, enriched by someone who is living with dementia? Leave a comment below, and you’ll be entered for the chance to receive a copy. (Winners chosen at random and notified by email. Limited quantities; while supplies last. No purchase necessary.)