Dementia: whose quality of life?

 

"Less than half' of dementia sufferers have 'good quality of life' in care homes” was Wednesday’s headline in the Independent, reporting the latest Alzheimer’s Society report on the care of people with dementia in care homes.

The report estimated that 80% of people in care homes have either dementia or severe memory problems. The article went on to say, quoting directly from the Society’s website, that less than 50 per cent of the 322,000 people with dementia in care homes across the UK have a good quality of life.

Actually that’s rather misleading as it was less than 50% (41% to be accurate) of relatives of people with dementia in care homes reported that their loved ones had a good quality of life. Yet somewhat buried in the report are the finding from a sample of people with dementia living in care homes where over three quarters of the sample said they were happy in the home they lived in. The sample was small and self-selected yet it raises two important points.

Firstly, all credit to the Alzheimer’s Society for seeking the views of people with dementia even if they chose not to talk this up. Secondly, it indicates that there potentially is a difference in the view of carers and people with dementia about what constitutes quality of life. I’ve discussed this issue before and in work we did for the Alzheimer’s Society in 2011 the point was made that there is a fair amount of evidence to show that reports by family carers about a person’s quality of life who has dementia varies significantly from what the person with dementia reports themselves. This suggests that many family carers, quite understandably, view the person’s quality of life from their own, often stressed out perspective.

We still don’t have a very reliable measure of quality of life as reported by someone with dementia, especially people in more advanced stages of dementia, but surely this is something we should be trying to develop? Isn’t it about time that some of the extra money that politicians tell us is going into dementia research was used to create such a measure?

We tried to develop a rudimentary measure to do exactly this as part of the research for My name is not dementia and would be keen to build upon this this work further. So, if you are a research funder, please get in touch!"