Aging at Home Alone with Alzheimer's and Related Dementias - Nearly 48 million individuals worldwide have dementia with projections estimating as many as 75
million may be afflicted by 2050. Although approximations vary, a substantial portion of those
affected live in the community alone, accounting for up to one-third of cases. The true proportion of
persons with dementia (PwD) living alone in the community may be underestimated as dementias
are often underdiagnosed and underreported. As the baby boom generation ages and trends
towards nuclear families, geographic dispersion of families, and fewer children continue, the number
of live-alone PwD is anticipated to rise; creating increased potential for difficult, ambiguous
circumstances involving the rights and needs of this population and their caregivers. Despite these
trends, available information about live-alone PwD is limited; studies have separately focused on
dementia or persons living alone with deficient concentration on the intersections of these groups.
The proposed in-depth multi-perspective qualitative study (N=120) builds on our partnership with
Maryland’s Department of Health to investigate the experiences of community dwelling live-alone
PwD and an informal caregiver (CG) or knowledgeable informant (KI). Using a successfully piloted
guide structured after a theoretically driven qualitative protocol, this study offers a unique and
comprehensive strategy to explore the complex and important perspectives of live-alone PwD and
their CG/KI, addressing four specific aims: 1. Explore the experience of live-alone PwD and their
CG/KI including lifestyles, needs, and beliefs systems; 2. Identify how live-alone PwD and their
CG/KI account for, take action, and otherwise manage dementia, including how future care planning,
care coordination, and adaptive strategies are involved in these processes; 3. Explore how live-
alone PwD and their CG/KI navigate and negotiate their physical and social environments; and 4.
Qualitatively explore variations in Aims 1-3 by race, gender, and CG-status. Code-based analysis
will be employed to examine how experiences, management strategies, and socioenvironmental
contexts vary within and across categories. A focus on such attributes will provide significant insights
into the complex and important issues of how informal and formal care is arranged, coordinated,
executed, how networks are created, extended, and manipulated to accommodate shifting needs,
and the environment’s role in aging at home alone with dementia. Attunement to such insights are
needed to develop contextually appropriate care and support plans, inform social services programs
that serve this population, improve provider’s approaches to communicating with and caring for this
population, and develop holistic transitions from home-based to formal care environments.