Persons suffering from dementia rate their distinct self-identity roles in the past and present differently from the way their family or staff caregivers rate those roles, according to Jiska Cohen-Mansfield, Ph.D.
Researchers studied 46 people attending six adult day care centers and 56 residents in two nursing homes in the Washington metropolitan area. A previously developed self-identity in dementia questionnaire was used to interview the participants, their families, and staff caregivers, reported Dr. Cohen-Mansfield, research director of the Research Institute on Aging of the Hebrew Home of Greater Washington, Rockville, Md., and colleagues (Soc. Sci. Med. [Epub ahead of print] 2005. Article DOI number: doi.10.1016/j.socscimed.2005.06.031).
The four self-identity domains investigated were professional, family/social, hobbies/leisuretime activities, and personal attributes/achievements/traits. Of these self-identity categories, family roles ratings were the most likely to be maintained over time, with almost half of the participants (48%) identifying their parental role as the most important of these. In contrast, family members rated the spousal relationship as the most important (31%) with parental role a close second (29%).
The study showed a significant time effect, with a decline in the importance of role identity from past to present, and the family role being the most important throughout. The importance of professional identity declined most.
The greatest discrepancy between family and participant reports on professional roles involved the category of homemaker. Of the 24 participants categorized by the family as homemakers, only 21% (5) of those participants agreed. The differential was largely attributable to reports of family members who were children of the participants and described their mothers as homemakers, while the mothers described themselves as having other professions. More than a third (38%) of responses from staff members indicating ignorance of the participant's occupation were for those whose family members described them as homemakers, Dr. Cohen-Mansfield reported.
In addition, although no significant gender differences were seen in role importance as assigned by participants and staff caregivers for each role group over time, family members reported significantly higher importance ranking for professional identity for males than for females in the past as well as present.
“Family members generally estimated the importance of role identities in the past to be higher, and that in the present as lower, than did the participants,” Dr. Cohen-Mansfield reported.
“Our results show that while general trends of a decline in importance of role-identity domains are the same between family informants and participants, the absolute ratings were significantly influenced by [which group were] informants.” This finding indicates a need to obtain as much information as possible from the participants in order to identify their role perceptions. Understanding the changing self-identities of these people with dementia is a crucial first step toward providing tailored care and enhancing their life experience, Dr. Cohen-Mansfield and colleagues reported.