Sunday, 5 December 2010

Dementia Care; Time is the Greatest Gift

I recently came across the Acorn Charity, a group in the Ripon and Harrogate area who raise money to help people with dementia and scleroderma and their carers.

 You may remember that about three years ago there was an ITV documentary, Love's Farewell which showed Malcolm Pointon, a dementia sufferer and his wife, Barbara, as they moved through Malcolm's illness to his death. I had seen the hubub in the media about the rights and wrongs of showing someone close to death on TV but, somehow, I had not registed the names of the people involved. I started to watch the documentary not realising that it would turn out to be about the tutors who taught me when I studied music at Homerton College, Cambridge in the 1970's. Both Malcolm and Barbara, gifted musicians and broadcasters, were on the staff of the music department there. I well remember Malcolm's honest and helpful advice about my attempts at composition for the piano. So I was deeply moved to hear him still making music at the piano despite a considerable degree of dementia. Watching this program and then various visits I have made to groups who provide day care for people with Alzheimers and other forms of dementia in this area sparked my interest in the provision of care for sufferers. Much of the standard care that is available does not suit the needs of people with dementia very well. Their great needs are for time (not being rushed) and for continuity (it's more difficult for someone with dementia to cope with making new relationships). We all know that the pressures on services that provide care mean that these two things can be almost impossible to achieve.

Acorn has been supporting the Alzheimer's Society which is based at Phoenix Park in Ripon. From that office, the Society covers Ripon, Harrogate and Craven. Besides running a 9-4 Monday - Friday Helpline, the Alzheimer's Society support befriending servies, lunch clubs and cafes, holidays for sufferers and carers and home visits by dementia support workers who have some specialist knowledge and skills. In a little on-line presentation Why Skillful Care Matters, Barbara Pointon describes the things that make a difference. The right kind of care can mean that someone is able to stay in their own home and  relatives are able to continue life's journey with their loved one without becoming completely overwhelmed by the demands of caring.

Barbara and Malcolm's bravery in sharing their story has produced greater national awareness of the plight of people with dementia. People like Acorn and the Alzheimer's Society co-ordinate efforts locally and help to get care to the people who need it. This is an area of health care that is going to become as big a concern as the fight against cancer in future years. It is part of the story of growing older, a story that must be told and given its place in our thinking about priorities for how and where we deliver care and what research is funded. The course of the disease is slow and doesn't attract the sustained sympathy or interest that some conditions do; the fact that caring for someone with dementia requires a different set of prioirites and communication skills from those normally used and valued in social settings makes carers isolated. 60,000 deaths a year, in the UK, are attributable to dementia and the incidence of the various forms of dementia is rising. Many families are caring for someone affected by it.

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