Salience of self-identity roles in persons with dementia: Differences in perceptions among elderly persons, family members and caregivers

In this study, we explored perceptions of the salience of self-identity in persons suffering from dementia as perceived by the participants themselves, by family, and by staff caregivers. Four types of role-identity were explored: professional, family role, hobbies/leisure activities, and personal attributes. Participants were 104 persons with dementia, 48 of whom attended six adult day care centers while 56 resided in two nursing homes in the Washington, DC metropolitan area. Participants, relatives, and staff members were interviewed to obtain information about past and present self-identity roles of participants and attitudes toward these roles. Findings demonstrate that the importance of role identities decreases over time and with the progression of dementia. The family role was found to be the most important and salient role identity according to all the informant groups. The professional role was the one that showed the steepest decline in importance from past to present. Gender differences were detected for the importance of professional role identity. Participants rated their roles in the past as less important and those in the present as more important compared to family members. Family members reported greater decline in the importance of role identities for those participants with greater cognitive impairment. Participants with moderate cognitive impairment reported greater decline in the importance of role identities than did the participants with severe cognitive impairment. Understanding the past and present self-identities of persons with diminished cognitive abilities is crucial in the effort to provide individualized care and enhance participant experiences.