Being given a diagnosis of dementia: the experiences of people with dementia and people who care for someone with dementia

Abstract

This study explores the issues raised for people with dementia and their carers when they receive a diagnosis of dementia. Previous research suggests that more people with dementia than other serious illnesses such as cancer will not be told their diagnosis. The implications of this for the way that people with dementia adjust psychologically to their situation are reviewed. It is suggested that the complex illness concept and the particular nature of dementia as an illness influence communication about it The research had three groups of participants. Twenty-six people caring for a relative with dementia completed a short survey. Two people with dementia and seven people caring for someone with dementia were interviewed face-to-face to gather in-depth information about their experiences of receiving and coping with a diagnosis. Grounded theory was used to analyse the interviews and a descriptive summary of the survey was produced. The survey confirmed that many people with dementia do not get told their diagnosis. The interviews described the issues raised for people with dementia, such as the feelings raised for them by having dementia and highlighted their ways of coping with dementia. The interviews with carers suggested that if sharing was an issue, the carers tried to strike a balance between remaining honest and protecting the person from the implications of the knowledge. Maintaining a sense of hope for the person seemed to be very important. A critical discussion of the methodology is presented. The implications for future research and the clinical relevance of the research are also discussed