Review: Datod is a powerful & affecting collection of essays about dementia

Jon Gower

When Beti George’s partner David was diagnosed with Alzheimer’s it was the beginning of a painful process of the disease dismantling his cognitive abilities and indeed their life together.  She had to watch a supremely articulate man – a rugby commentator and author of twelve books – forget the punchlines to jokes, then the name of the person who had only just phoned, how to shave and finally how to go to the toilet. Much of the time he was unaware of what was happening, but on salutary occasions Beti would catch him looking into the mirror, talking to himself, saying “I’m dead.”

Dementia is an illness and so, Beti George maintains, dementia care should be free, as is true for, say, cancer or heart disease. It’s because of such unfairness that she’s amassed this direct, powerful and affecting series of essays, arguments and recollections. We hear from those with dementia and their relatives, clinicians and research scientists, care home managers and those offering specialist help. In her introduction Beti George cites Sue Phelps, the director of the Alzheimer’s Society in Wales who has said ‘With an ageing population, no approved treatments to slow it, an overstretched social care system, we need to take urgent action to tackle dementia in Wales.’

In light of such urgency, this book is not only a call for action but also offers some pragmatic ideas for change. Some will happen, such as raising the financial bar before people have to start paying for care, a change wrought in part because of the activism of people such as Beti George. She is, of course a doyenne of Welsh broadcasting with a ready flair for communicating.

Add passion, inner steel and a sense of abiding injustice to the mix and she makes a fierce advocate for the rights of those affected by Alzheimer’s in its various manifestations. In this book she has intelligently and persuasively collected case histories and worked examples of where the system is unfair, often to the point of being degrading.

Systemic inequalities

One of the systemic inequities is the fact that people have to pay for care to the extent of selling their own homes. A chapter by former council chief executive of Dyfed County Council John Phillips examines the effect of dementia on his wife Bethan and on the family, and in particular the difficulty of proving that a person needs ‘continuing health care’ under the NHS should they be discharged from a hospital into a nursing home, thus making such treatment free.

In his case he had a long struggle against the local Health Board to accept that his wife needed such care, only winning the argument after his wife had passed away. Plaid Cymru Senedd Member Rhys ab Owain meanwhile compares the care provision for Alzheimer’s with other illnesses and finds it sorely wanting, not least because of the way the burden is often placed on relatives, who soon become full time carers.

He balances such scrutiny with personal accounts of the way his politician father, Assembly Member Owen John Thomas, was affected by Alzheimer’s, most painfully the ‘terrible reality’ of the disease, namely ‘grieving over someone who is still alive, as the disease steals away the person you once knew. I felt grief for Dad too – that he had lost many of his memories and also lost out on creating new ones.’  Rhys ab Owain is one of many contributors who consider the need to deliver care through the medium of Welsh, a subject amplified in Dr Conor Martin from Ysbyty Gwynedd’s essay.

Here he underlines the importance of understanding individuals when considering the care they need. He cites research in Wales which found such considerations needs must include the language and its culture.  Dr Martin suggests that it is ‘impossible to imagine a Welshman or Welshwoman without thinking of their roots in the Welsh landscape, the history, poetry, the idioms and traditions which flow naturally through their veins.’

He visited two homes in north Wales where many of the residents require dementia care, one where Welsh language was naturally present, in part because of the ease of recruiting Welsh speaking staff. The other was an environment where English was prevalent. In the former people felt more at home, it created a sense of homeliness and it was easier to work with the residents, to find out what they wanted. A Welsh speaker with profound dementia needs was described by a non-Welsh speaking carer thus:

He can become really confused and not really sure of what’s going on at all, especially when it comes to the personal care side of things. He becomes quite upset, agitated, and I’ve seen if someone can go in there, and say in Welsh what we’re there for, then there is a difference.

Warm-heartedness

Dr Martin goes on to point out that in Canada public sector workers get a bonus for learning French and encourages the Welsh Government to take similar, positive steps.  Another good model is presented by Professor Mari Lloyd-Williams, who chronicles the experience of setting up Gofal Dydd, a day care centre unique in Wales because it is entirely staffed by volunteers where the main qualifications are warm-heartedness, an open mind and ability to keep a secret, as the Welsh community they serve is very small and they need people to know that problems aren’t discussed outside the centre.

They do not offer dementia care alone, offering some respite to carers looking after people with cancer, Motor Neurone disease in the St. Asaph area as well as offering a range of activities to those who attend, from Tai Chi through gardening to bread-making.

Another example of an idea that works is provided by Dr Catrin Hedd Jones who details schemes wherein children spend time with the elderly which has benefits for both, and has been recorded in TV programmes such as The Toddlers Who Took on Dementia.

A strength of the book is the simple clarity of some of the professional contributions. A case in point is psychiatric consultant Dr Ceri Gwynfryn Evans’ account of what dementia is and the process by which it is diagnosed, the state of play of treatments to deal with the condition and ways of reducing the risk of it developing in the first place.

Professor Julie Williams from Cardiff University surveys the field of research and lists the many ways in which Welsh institutions and individuals have pioneered and contributed to global research, with a hundred researchers in Wales currently working on various kinds of dementia including Alzheimer’s, Parkinson’s and Huntingdon’s disease.

Loss and attrition

This book was written during a pandemic which had profound consequences for care homes. Consequently one of the most affecting accounts in the book is a conversation between Beti George and Jayne Evans who manages Glyn Nest care home in Newcastle Emlyn, a searingly honest account of the trials and tribulations of offering care to people who often couldn’t see their family at all.

Other accounts such as Efan Rhys Fairclough and Ffion Heledd Fairclough’s twin accounts of their grandfather, Phil Richards’ dementia underline the importance of familial interaction and the role stimulus can play in arresting the effects of dementia, while former nurse Glenda Roberts writes tellingly from the point of view of someone who herself lives with dementia.

She describes the slow loss and attrition – the early signs when she couldn’t tranfer phone calls from one ward to another, forgetting to send birthday cards, missing appointments. A woman blessed with a very positive spirit, she has negotiated a lot of hurdles, made arrangements should things get worse, leant a little more on her husband Ifor. She has also become a tireless campaigner for fairness for those affected by dementia.

This is a quality she shares with the editor of this book, two determined women taking up the cudgel, arguing their case and saying it as it is. Theirs are voices that need to be heeded, in a country which currently has 50,000 people affected by dementia and a future looming where there will be many, many more.

Datod is published by Y Lolfa.  You can buy a copy here or in your local bookshop