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Life-changing messages for people with dementia

We must challenge the rhetoric that describes those living with dementia as no longer themselves, says Roger Clough. Plus letters from Nori Graham, Jim Cosgrove and Barbara Deering.

Julianne Moore in Still Alice. ‘We must challenge the rhetoric that describes individuals living with dementia as no longer themselves: the book and film Still Alice was so entitled to capture that abiding truth,’ writes Roger Clough.

Nicci Gerrard writes movingly about the ways that we try to keep dementia at arm’s length (Don’t ignore dementia – it affects us all, 15 August). Dementia is what so many of us fear most about old age. It is a disease of the brain, but its impact is immeasurably different to other physical diseases. It is thought of as a single invasive force, but may affect memory, behaviour, sense of location or speech. Because of fear of the present and the future, many try to hide its development from partners, outsiders and indeed themselves. Above all, the fear seems to be of losing one’s self, the sense of “who I am”.

It is imperative that we talk about dementia, and that we guard against the words that are so destructive of people’s hold on their lives. I remember from a research project the raw pain of a woman talking about the hospital visits when she and her husband found out he was living with dementia. There was a wonderful, warm consultation when the husband pleaded with his wife not to respond to the request to say what was going on. She knelt down at his knees and said: “I’ve got to.” They both trusted the consultant, who did not appear threatening. Other episodes were not like that. On one occasion she asked how best to support her loved one and was told to stop thinking about him as “he has no quality of life”. Another time she wanted to accompany him when he was undergoing tests but was asked not to. He came out crying: “I’ve let you down, sweetheart; I’ve let you down. I couldn’t answer all their questions.” She was angry that she had not been there to hold his hand.

There are simple, profound, life-enhancing messages. We must challenge the rhetoric that describes individuals living with dementia as no longer themselves: the book and film Still Alice was so entitled to capture that abiding truth. Again, as Nicci Gerrard writes, we must recognise and live with our vulnerabilities. We have to develop ways of assessing people, testing and diagnosing that do not diminish those individuals’ faltering sense of self. Finally, some people find ways to live well with the frightening challenge of dementia. We must learn from that.

Roger Clough
Emeritus professor of social care, Matlock, Derbyshire

As an old-age psychiatrist with many years’ experience of dementia care, I fully endorse Nicci Gerrard’s description of the profound distress suffered by people with dementia and their carers. She does not, however, describe how an individualised care system could reduce this distress very significantly. Other countries, such as Germany, have achieved a much better level of service. At the present time, even the inadequate resources provided by successive UK governments are wastefully deployed. A national plan for the funding of social care based on general taxation, so that those families unlucky enough to be struck by the disease are not unfairly penalised, is urgently required. This is needed both to ensure effective use of existing resources and to clarify what additional sums are required. Sorting this out can only be achieved by cross-party agreement.

Dr Nori Graham

It’s well known that music memory, with its innate elemental structures, personalised relevance and emotional resonance, is highly relevant to the treatment of dementia. Yet clinical music therapy is mostly unavailable and overlooked as a valuable therapeutic intervention. While various worthy arts initiatives including recreational music are delivered at a number of centres, the use of fully trained clinical music therapists is rare, within the wider template of therapeutic healthcare.

Jim Cosgrove
Senior music therapist, Lismore, Co Waterford, Ireland

Nicci Gerrard raises an almost taboo subject in the current climate of youth and fear of ageing. I would like to thank the people who care for those with dementia, whether they are at home, in the community or in a nursing home. Although their expertise, pay and funding is undervalued, it is an essential part of making lives worth living.

Barbara Deering
Princes Risborough, Buckinghamshire