Journeys Into Alzheimers

Once an ignored, overlooked condition, Alzheimer’s and other forms of dementia are in the spotlight like never before, thanks in part to a growing number of books on the subject. But are these books any more than a new form of ‘mis lit’ and can they really help make a difference?

In retrospect, there was a certain inevitability about it. Last November, when the comedienne and former psychiatric nurse Jo Brand announced the winner of the inaugural Wellcome Trust Books Prize for ‘outstanding works of fiction and non-fiction on the theme of health and medicine’, it seemed only right that it would be a book on the subject of Alzheimer’s.

This is by no means intended as a slight to the quality of the winning book, Andrea Gillies’ Keeper — Living with Nancy, A journey into Alzheimer’s. Jo Brand described the book as “the perfect fusion of narrative with enough memorable science not to choke you,” and “down to earth and darkly comic in places”.

And we agreed: Able magazine, back in our January/February 2010 issue, described the book as “a decidedly subjective and yet authoritative description of Alzheimer’s, lifting the lid on the everyday realities of living with dementia and describing, with an often heart-rending honesty, the emotional strains and trails faced by both Nancy — increasingly losing her memories, identity and understanding of the world around her — and Andrea’s own increasing role as carer and protector.”

MORE JOURNEYS

It’s fair to say that publishers are not adverse to jumping onto whatever bandwagon might be passing; if one publisher is lucky enough to find itself with a bestseller, then — no matter the subject — it’s fair to say that other similar books will follow in the next year or so.

While books about Alzheimer’s are still far from being two a penny, it’s fair to say that the number which have turned up Able magazine for review purposes in recent months has increased significantly. It would seem that Alzheimer’s and dementia are, at last, the medical conditions that are daring, at last, to say their name.

It helps, of course, that in our celebrity-fixated world, dementia has become linked with people in the public eye. General awareness of the condition undoubtedly increased since the novelist Sir Terry Pratchett went public about his diagnosis with ‘early onset Alzheimer’s’; around the same time, former ITN journalist John Suchet began publicly speaking of his role as a carer for his wife, Bonnie. People ranging from former newsreader Angela Rippon and Tony ‘Baldrick’ Robinson to acerbic columnist AA Gill have all spoken of how dementia affected their parents — yes, Alzheimer’s can affect celebrities too.

FIRST PERSON THIRD

Books about dementia invariably have one thing in common; they are never written from the point of view of the person with the condition, particularly once it is well advanced. It can’t be. For, as John Suchet is the first to point out, the one person who doesn’t know about his wife’s Alzheimer’s is… his wife. Even now, several years later, he can’t even be sure Bonnie really understood the diagnosis; if it existed at all, the awareness was quickly lost alongside so many other memories. “It really is as if this wretched disease might have one redeeming quality,” Suchet wrote. “It is protecting Bonnie from understanding what is happening to her.”

But, for Suchet, that was small consolation as he realised he was “slowly but unstoppably” losing his darling wife of 20 years, and turning from lover to carer in the process. As a professional journalist and author, it’s not surprising that that his anger, his grief, is to some extent filtered, controlled, made into a story: his is an affecting, personal story, but one that has necessarily been shaped for the purposes of telling how a passionate marriage was ‘replaced by heartbreaking loneliness and despair’, to quote the press release. “This is hard to believe, and even harder to write. The intimacy has gone, and it is slowly killing me,” is how he concluded one chapter; while his anger and guilt at his own frustrations with his wife are palpable throughout, there is nevertheless the craft of a professional writer on display, guiding the reader in a controlled manner.

Another John, John Walsh, also published a book on Alzheimer’s this year. He is, by profession, a travelling salesman, and a self-described ‘simple man’ who has simply learned a lot about Alzheimer’s in recent years. It’s fair to say that his own memoir about his elderly father’s Alzheimer’s, and its affect on his family — Who Will Sing The Old Songs? — is a far more visceral, more direct book than Suchet’s. Walsh is frequently prone to slip into Daily Mail-styled diatribes about all the money spent on “the work-shy, feckless and long term useless” and the “alcoholics and drug dependents, the deadbeats and low-life’s and the out and out basic scroungers”. But then, as he himself admits, he was “gobsmacked” by his discovery of the reality of the UK’s health and social care systems, and the seemingly low priority given to the care and support of people with dementia.

HAPPY ENDINGS?

Frequently, Suchet acknowledges that, compared to most people affected by dementia, he was actually quite lucky; yes, the emotional hurt of losing his beloved wife was real enough, but he lived in one of the few areas in the UK where he could be allocated a specialist dementia-trained Admiral Nurse. He was also in a position to employ a ‘wonderful’ home-help in the form of Monika from Poland, who time and again he portrays in his book as being far kinder and more understanding of his wife’s condition than he was. But he accepts that relatively few other people are in that situation, which is why he continues to support the campaigning work of Dementia UK.

It’s fair to say that Walsh has seen this other world of dementia care, and didn’t find it pretty. “I was terrified by the position we found ourselves in when my poor old dad became ill,” he says when explaining why he decided to write his book. “I decided to highlight the dilemma and sense of helplessness that was so suddenly bestowed on us.” No wonder at times he feels he needs to lash out at those he sees as less deserving of tax-payers’ support than the generation that got Britain through a World War.

For both Johns, their individual stories ‘ended’ with their loved ones settled and happy in ‘amazing’ care homes; although by no means an easy decision for either, both Johns at least now know that they can get on with the rest of their lives safe in the knowledge that their loved ones are well-looked after. For John Suchet, that new life in part remains being a public face of dementia, continuing to campaign for improved levels of support, assistance and research into a condition that is only going to become a bigger problem as the UK’s population continues to age. As we said of Andrea Gillies‘ story: “The book is also a chilling warning of what is becoming an increasingly common experience for many more of us.”

Keeper: Living with Nancy, A Journey into Alzheimer’s, Andrea Gillies, Short Books, £11.99, ISBN 978-1-90602165-8

My Bonnie: How dementia stole the love of my life, John Suchet, Harper Collins, £18.99, ISBN 978-0-00732842-0

Who Will SIng The Old Songs?, John Walsh, Matador, £9.99, ISBN 978-184876-359-3