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.
Although approximations vary, a substantial portion of those living with dementia reside in the community alone, accounting for up to one-third of cases. As the baby boom generation ages and trends towards nuclear families, geographic dispersion of families, and fewer children continue, the number of live-alone persons with dementia is anticipated to rise; creating increased potential for difficult, ambiguous circumstances involving the rights and needs of this population and their informal caregivers. Thus, exploration of the personal experiences, management strategies, and socioenvironmental contexts of this population and their support networks has major policy and public health implications.
