Facing the future

Abstract

This article describes a qualitative study of the understandings of dementia held by a sample of 48 older people and 48 family members, who were interviewed separately, prior to assessment at a UK memory clinic. Most of the older people awaiting assessment described their lives as having purpose, meaning and pleasure for themselves and others. However, these individuals, who later received a diagnosis of a dementia, and their family members, perceived dementia as a loss of mind, associated it with loss of bodily functions (continence and mobility) and considered that it would negatively affect personal relationships and pleasure. For many, the consequences of dementia were predicted to be family upset, inactivity and an inevitable relocation to a care home. Most of the individuals and their family members showed a mutual concern for the future well-being of each other. The findings are reported with reference to an Illness Representation model, which captures a participant's appraisal or perception of a ‘health threat', in other words, the possibility of a dementia diagnosis. Service developments are proposed that acknowledge the personal strengths and concerns of memory clinic attendees and their families during this liminal time of waiting for assessment and possible confirmation of dementia. Advice on the maintenance of pleasure and relationships, as well as information that addresses the fears identified, are important avenues for timely psychosocial support, since these have potential to shape positive attitudes and lifestyle following a dementia diagnosis.