Anne Karpf’s article is a powerful and timely reminder that people living with dementia are too often overlooked and underestimated (‘You’re treated like this is the end’: Meet the dementia rebels – diagnosed and determined to change people’s minds, 9 June). I particularly welcomed its emphasis on continued engagement through new experiences, learning, volunteering and social connection. Too often, a diagnosis leads others to focus solely on decline rather than on the person’s remaining abilities, interests and capacity for enjoyment.
My wife was diagnosed with dementia in her 50s. While she was able, she greatly enjoyed volunteering, embroidery, singing, eating out, social events and participating in a walking group. These activities brought purpose, enjoyment, and a sense of belonging. They also demonstrated that a diagnosis of dementia does not mean the end of a meaningful and fulfilling life.
As the article suggests, people with dementia continue to live rich emotional lives even when communication becomes difficult. Although my wife is now at an advanced stage, she can still express pleasure, fear and frustration. The challenge is often for those around her to recognise and interpret those signals through facial expressions, gestures, body language and behaviour. This places responsibility on caregivers, professionals and society more broadly to listen carefully, respond with patience and empathy, and avoid talking down to people with dementia. Even when words are lost, dignity, respect and human connection remain vitally important.
Barry Coleman
Tamworth, Staffordshire
Maxine Linnell, one of the dementia activists featured in your article, is absolutely correct – all too often people’s attitudes are changed by a dementia diagnosis. One of the challenges that Maxine and many others who are living with dementia face is that this attitudinal change is true not just of the general public but of many of the health and social care workers who provide assessment, diagnostic and post-diagnostic care.
While memory clinics typically provide some (albeit limited) practical and informational support, they rarely support people to adjust to their illness – partly because of a faulty assumption that people with Alzheimer’s and other forms of dementia will inevitably lack awareness. In our work we have found over and over again that this is just not the case – as indeed is demonstrated by the testimonies of Maxine and so many others.
What is desperately needed is a willingness to provide the emotional and psychological support that helps people to adjust – for instance through the LivDem programme, or other post-diagnostic groups. This support can often help people to feel that they are not alone, to feel less frightened by the diagnosis and to help them to talk more openly about their illness. While some trusts and voluntary and community sector organisations provide this support, it is something of a postcode lottery.
Richard Cheston
Professor of dementia research and clinical psychologist, UWE Bristol
As someone who has been closely involved over 20 years with the care of three people dear to me with a dementia diagnosis, I have found that health and social care staff have become increasingly risk-averse and reluctant to think creatively about the least restrictive alternatives; rather, it’s doctor knows best. But the most iniquitous element in the patchwork of provision is the labelling of people’s health needs as social care, and the financial implications of this.
I hope Louise Casey’s final report on social care will contain solutions that can be agreed by all parties, but I’m not holding my breath. In the meantime, we should be immensely grateful for the dedicated carers, paid and unpaid, many of them immigrants, who continue to support people with dementia in ways that respect their dignity and autonomy.
Hilary Caldicott
Biggar, South Lanarkshire
My deepest sympathies to Jon Snow and his wife for his Alzheimer’s diagnosis (Report, 5 June), from someone who knows something of the likely road ahead. I admire his bravery in sharing his condition publicly. I disagree profoundly though, with the points made by Michelle Dyson, CEO of the Alzheimer’s Society, about the need for early diagnosis and the comparison made to cancer.
My mother was diagnosed with Alzheimer’s early on. The outcome of an early diagnosis was that the death sentence also fell early, and my mother fell into a deep depression for over a year, when with hindsight she should have been making the most of her remaining time. There is no possibility of cure or of remission for dementia, unlike cancer, thus knowing early that you have the disease means you have to live with the knowledge for far longer.
My mother lived for over a decade after her diagnosis, with pitifully little practical or emotional support from either medical professionals or charities, including the Alzheimer’s Society. Nobody gave us vital support, or helped us plan ahead, despite repeatedly asking. My mother was in a clinical trial, but it dominated two good years of her life. In the end, we had to manage her illness and decline all by ourselves, at vast expense, because it all counts as social care.
So I wonder if, like Jon who watched his mother suffer, I will also eventually get the disease that killed my mother. I think about it probably far too much, aged 56. But I wouldn’t ever seek an early diagnosis for an incurable and untreatable disease – I wouldn’t want the last few good years of my life ruined by the foreknowledge of what is inevitably coming to me.
Tamsin O’Connell
Cambridge
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