Research suggests that the onset and progression of dementia may pose a threat to a person's sense of identity. This qualitative study used Interpretative Phenomenological Analysis to explore participants' perceptions of the impact of dementia on their identity. Participants were ten people with dementia. The four themes emerging from the data represented participants' views on aspects of their current identities, whether they believed that dementia would alter their identities in the future, perceptions of how dementia had affected their lifestyle, and relationships with friends and family. The analysis suggested that for the most part, participants felt that little had changed with respect to their identities as a whole, but most identified features of themselves that were different than they had been prior to the onset of dementia. Thus it appeared that participants were in a state of flux, experiencing both continuity and change in their sense of identity simultaneously.
Interventions aiming to support self and identity in people with dementia are currently in the early stages of development. Firm recommendations cannot be made at this time. Further well-designed studies are required to provide more robust evidence.
The aim of the study was to determine whether people in the early stages of dementia experience their sense of identity differently to healthy older people and to examine whether different aspects of identity are related to each other in each group. This was a cross-sectional questionnaire-based study; 50 people with early-stage dementia and 50 age-matched people without dementia completed measures pertaining to different aspects of identity. Measures of mood and self-esteem were also included so that any differences could be taken into account in the analysis. There were very few differences in identity between the groups. After differences in levels of anxiety were accounted for, there were no differences in scores on most measures of identity. However, people in the early stages of dementia scored significantly lower on one subtotal for one measure of identity, whereas healthy older adults reported significantly more identity-related distress than people in the early stages of dementia. For both groups, there were no associations between different aspects of identity. People in the early stages of dementia do not differ much from healthy older adults in terms of their identity. Since healthy older people experience more distress relating to identity, they may be more likely to benefit from some sort of intervention than people in the early stages of dementia. It might be useful to consider identity as consisting of multiple components in future studies, rather than assuming that one aspect of identity represents the overall experience of identity.
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