Making sense of dementia in the social world: a qualitative study

The reactions of others can have a significant effect on the lived experience of dementia. Although the literature contains some theories of dementia that take this into account, few studies have asked people with early stage dementia about their experiences of other people's reactions to their changed condition and social status. In the present study, 12 men and women aged 66-87 with early stage dementia, recruited through an Older Adult Mental Health Unit in London, England, were interviewed to elicit their views on others' reactions to them since receiving the diagnosis. They were also asked what they thought others understood by the terms 'dementia' and 'Alzheimer's Disease'. Transcripts were analysed using Interpretative Phenomenological Analysis. Participants displayed somewhat negative reactions to the term dementia, and were concerned others would associate it with being 'demented'. In connection with this, although they were comfortable sharing their diagnosis with those closest to them, they were reluctant to do so beyond this private inner circle. Participants were keen for those who did know about the condition to respond authentically and honestly to them, helping them when necessary but as far as possible carrying on life as normal. A number of the participants seemed to be trying to work out how dementia differed from age-related memory loss and compared themselves with others to aid their understanding of this. The implications of these findings for clinical practice, carers and wider society are discussed.