People with severe dementia can be enabled to express views about what is important in their lives, according to new research.
The research by the Mental Health Foundation for Alzheimer’s Society also concluded that maintaining a good quality of life was “perfectly possible” following a diagnosis of dementia.
And it found a “discrepancy” between the views of people with dementia and those caring for them on what was most important to their quality of life.
Separate research for Alzheimer’s Society found only 13 per cent of the general public believe that someone with dementia could have a good quality of life at all stages of their condition.
New figures suggest there are 750,000 people living with dementia in the UK.
Those researching the My Name Is Not Dementia report talked to 44 people with dementia, including those from black and minority ethnic communities and people with more severe dementia living in care homes.
The project aimed to improve the measurement of quality of life for people with dementia, drawing directly on their own views and experiences.
It found that the top five indicators of a good quality of life were: relationships, or someone to talk to; the environment; physical health; a sense of humour; and independence.
The report concludes that people with dementia have “a clear need for regular, everyday, one to one social interaction and this will have significant benefit to their quality of life and social inclusion”.
And it found that people with more severe dementia can express their views about quality of life issues using picture cards.
The report says a way should be found to monitor the quality of life for people with dementia, measuring whether it is improving or declining and providing information on the factors that might explain any changes.
Such monitoring would “provide vital information” on the success of public policies, such as the implementation of the national dementia strategy for England.
Ruth Sutherland, acting chief executive of Alzheimer’s Society, said: “By listening to people living with the condition, as this report does, we can better understand what is important to them and how they would like to live their lives. We need to learn to see the person not just the dementia.”
Heather Roberts, 54, who was diagnosed with Alzheimer’s disease four years ago, said: “Being diagnosed with Alzheimer’s disease certainly changed my life but that doesn’t mean I don’t have a good quality of life.
“Yes I have dementia but there is much more to my life than that.”
15 April 2010