Renee L. Beard
The lion’s share of care for American seniors with memory loss is shouldered by their spouses, who tend to be older and are sometimes frail themselves. Previous research has bifurcated attention to either accounts from diagnosed individuals or carers rather than understanding the experience within a socio-relational context of enduring relationships. The present study was a mixed methods investigation of 23 community-dwelling dyads facing Alzheimer’s in the Greater Boston Area (N=46). They were predominately white, highly educated individuals with mild to moderate ADand their spouses. A subset of eleven spousal dyads were divided into I/Me (n = 5) and We/Us (n =6) groupings based on qualitative analyses. Diagnosed individuals were given measures of cognitive and functional ability and carers completed anxiety, depression, burden, relationship satisfaction, and positive aspects of caregiving scales. No significant differences between groups on cognitive or functional ability, or carer anxiety, depression, burden, or relationship satisfaction were observed. However, We/Us spouses expressed more positive aspects of providing care than I/Me partners. Grounded theory methodologies were used to collect, code, and analyze the interview transcripts from the full narrative dataset (N = 23 couples). These data revealed that most couples (n = 15) approached AD as a joint challenge and were committed to maintaining their prior roles and lives for as long as possible, including shared outlooks, approaches and activities. By showing how some couples navigate AD together rather than separately, these data provide an important counter narrative to the burden-based framing of AD in the American social imagination. Regardless of perceptions of relationship closeness, all dyads employed strategies to live life positively with Alzheimer’s. These data reveal the importance of studying AD as a coupled or family event; that is, a social and relational matter, rather than simply an individual medical problem.
