Threat to valued elements of life: the experience of dementia across three ethnic groups

Abstract

Purpose: There is a fundamental knowledge gap regarding the experience of dementia within minority ethnic groups in the United Kingdom and elsewhere. The present study examined the subjective reality of living with dementia from the perspective of people with dementia within the 3 largest ethnic groups in the United Kingdom.

Design and methods: This was a qualitative study in which in-depth individual interviews were conducted with 11 Black Caribbean, 9 south Asian, and 10 White British older people with dementia. The lack of information in this area prompted the use of a grounded theory approach.

Results: The main theme to emerge from the interviews with the people with dementia was "threat to valued elements of life." Participants engaged in a process of appraisal in which they assessed the degree to which their condition and support needs interfered with valued elements of life. The analysis revealed that each element of this process was culturally informed.

Implications: There is potential for modifying beliefs to reduce the perceived threat of dementia and for family and professional carers to promote the roles, relationships, and activities that each person with dementia values. The findings outlined in this paper can inform the development of a culturally sensitive approach.