The psychiatrist Hugh Series, in a book edited by me, Jonathan Herring, and Issi Doron observes that there is a dearth of research on the views of people with dementia.[2]It seems to have been assumed that the fact of the diagnosis made it inappropriate to ask dementia patients what they thought of their own lives.
But when they are asked, the results are interesting and perhaps surprising.
Let’s start with some evidence that tends to support the traditional picture of dementia as a relentlessly awful disease for everyone touched by it. Aggarwal et al (2003), in a study of 27 patients with dementia and 28 relatives, that 100% of the patients described feelings of loss of independence, 56% frustration or anger, 48% sadness or depression, and 96% problems with communication. They tended to be very critical of residential homes, on the grounds that there were few activities, and choices were restricted. These criticisms weren’t universal. Two residents said that they were relatively happy. And, interestingly, comments about day care were much more positive.
Which brings me to the study of Cahill et al (2004), which investigated the views of 98 dementia patients living in their own homes.
Most of Cahill’s respondents reported positive feelings very often, often, or sometimes. More than 70% said that they enjoyed a good, very good, or excellent quality of life: only 15% said that their quality of life was bad.
Of course the two samples are not medically comparable. The patients in residential care tended to be there precisely because they were more impaired by their dementia than those living in their own homes. But one should not necessarily conclude from this that quality of life deteriorates as the dementia progresses. Banerjee et al (2006), in a study of 101 dementia patients, 99 of whom had family carers, concluded that quality of life did not correlate with the severity of the dementia or the functional limitations resulting from the dementia. The social environment seems to be more important than the neurology.
