I am one of the millions who understand only too well why the work of Alzheimer’s Research UK is so important. Indeed much of my book, Where Memories Go: Why Dementia Changes Everything, is devoted to exploring where science is at in understanding the various forms of dementia, and to asking how smart it can possibly be that a condition that costs the UK economy more than cancer and heart disease combined should attract research spending 12 times lower than is spent on investigating the causes of cancer. Dementia is something which has in all sorts of ways skewed our sense of priorities as a society and warped our vision not only of what is morally right but of what is financially sensible.
My experience with my mother gave me an insight into all these things – not just as a daughter but as a journalist. Helping to look after an adored mother for the 12 years or so that the symptoms of dementia were visible enabled me to inspect those issues from within a highly personal story.
But although this is MY story, it could be anybody’s – anybody who has loved someone with dementia and fought to help them retain their individuality, their social possibilities, their health, their relationships and their opportunity to be themselves for as long as possible, and who has done it, by and large, within a community that doesn’t understand very well and a care system that, despite the heroic efforts of many people within it, remains massively dysfunctional.
My mother Mamie was a former journalist and writer, a great raconteur, someone who made a later career of public speaking, a bit of a show-off frankly. Dementia changed her – of course it did – but she remained (and I came to believe this very strongly) uniquely herself – an individual with continuing likes and dislikes and tastes and prejudices and affections and hopes and, for a long time, skills.
In the course of about 12 years, the mixture of Alzheimer’s and vascular dementia that was her particular lot affected that witty, confident, breezy, laidback personality. It stole (though never completely) her ability to express herself as she wanted. But right to the end of her life there were continuing joyous flashes of sharp wit and breathtaking discernment and undiminished pleasure in puns. ‘Would like you like some music to make your spirit soar?’ I asked her one day, when her illness was pretty advanced. ‘Would that,’ she replied dryly, be ‘s-o-a-r’ or ‘s-o-r-e’?
On a walk along the track at home one afternoon, well into our dementia experience, I stopped to tie her coat more firmly against a sharp autumn wind. The belt was too tight and she tried to fiddle with it. ‘I can unloosen it, if you like,’ I offered. She looked up calmly. ‘You know there’s no such word as unloosen, don’t you?’ I murmured under my breath, ‘Not so daft, are you?’ which she parried immediately with, ‘As you may have thought hitherto’ – one of those carefully literate constructions in which she took continued pleasure.
All across the dementia years we had some wonderful times together.
That was such a fantastic moment of her being herself and I exulted in it. All across the dementia years we had some wonderful times together – walks and drives and singing and snuggling up together in bed and giggling over a joke. And it was my mother who showed me how to savour them as in-the-moment experiences. She showed me, ironically, how to be happy.
The one thing that really kept my mother connected, as dementia tightened its grip, was music. My mother had always loved to sing and all the way through we sang with her the old songs she had sung as a child and a young woman: hymns, Scots ballads, war songs, even ones of more recent vintage like those in The Sound of Music. They never lost their almost magical capacity to restore to her a sense of belonging and identity and to bring words fluently and often joyfully to her tongue.
After she died, I founded a charity, Playlist for Life, to encourage access for everyone with dementia to personally meaningful music on an iPod. And already we have seen one person after another reconnected to their loved ones and to that elusive, precious thing, their “selves” through sharing the music from their past this way.
Research is urgently required here too. Playlist for Life is collaborating with Glasgow Caledonian University to put together a major research grant proposal that, if successful, will measure the efficacy and economic benefits of this approach and assess its suitability for roll-out across the UK as a post-diagnostic tool in the treatment of all forms of dementia. Personally meaningful music, delivered any time of the day or night when it’s needed – before a distressing bath, for instance, or when the agitations of the evening begin, or to calm a night of screaming – can have the most extraordinary effect. Crucially it often restores a sense of identity, as if the music returns you to a place where you know who you are. I saw this effect with my mother over and over again.
This is what I write to her in Where Memories Go, close to the end of her life:
“Anyone seeing you for the first time reclining here on your high bank of pillows with your eyes almost closed, pale and motionless, in the last stage of a terminal disease that has thoroughly overrun your brain and started to close down everything else, would surely imagine there was nothing more to this inert form than hollows and shadows and bones poking through polished skin. ‘A breathing cadaver’ is how I once heard this stage mercilessly described. They would never have guessed that you were inside. You, the woman with a head crammed with songs. You, the mother who has remained a mother. You, the lover of words who has continued to conjure them from somewhere until almost the very end.”
My mother was inside. She was always inside. There is a person inside everyone with dementia, a person who remains an individual, capable of living fully and well for a long time, with a personality to which they can be kept connected if we go about it the right way, an innate dignity which can be cherished, and a life that can be affirmed and enhanced in all sorts of ways.
Where Memories Go: Why Dementia Changes Everything is published by Two Roads.