The two voices of alzheimer's: Attitudes toward brain health by diagnosed individuals and support persons

Abstract

Purpose: Most individuals with Alzheimer's are cared for in their homes by unpaid family members. Research on caregiving focuses disproportionally on costs of care, service utilization, and negative psychosocial outcomes. Few narrative accounts of Alzheimer's exist; those that do suffer similar pejorative framings and narrow foci. No studies that we are aware of examine the health beliefs of diagnosed individuals and support persons, or their attitudes about brain health. This research reports perceptions of "aging well" held by those most intimately acquainted with Alzheimer's. Design and Methods: Diagnosed individuals and their support persons (N = 85) were enrolled into 14 focus groups. Grounded theory methods were used to collect, code, and analyze textual interview data into overarching themes. Results: Respondents found physical and mental health, social activity, independence, and happiness integral to aging well. An acceptance of various limitations was also deemed crucial. Support persons placed more emphasis on lifestyle factors and memory loss as potential obstacles. Diagnosed respondents defined memory loss in less medicalized terms, whereas support persons labeled it Alzheimer's and negatively characterized those affected. Both groups warned against discussing "prevention" of dementia: Diagnosed individuals noted the implication of "aging poorly" and support persons cautioned against blaming diagnosed individuals. Implications: These findings can be used to encourage positive health beliefs and behaviors tailored to the needs of diagnosed seniors and their families, to help practitioners and researchers identify and become sensitive to differences between and among older adults, and to further advance the utility of narrative accounts for informing health interventions and education efforts.