A Narrative Inquiry Into the Lived Experiences of the Oldest-Old Caregivers and How These Are Shaped by Age and Aging

Oldest-old (80+) spousal caregivers of people with dementia are a fast-growing, highly vulnerable, and poorly understood population. As oldest-old individuals, these caregivers have a high likelihood of experiencing aging-related changes (e.g., frailty and multimorbidity) that result in unique caregiving experiences and support needs. Specialized interventions, sensitive to caregivers' age- and aging-related experiences and needs, may be required to provide adequate support to this group. To date, this group has received limited attention in the literature. Thus, the purpose of this study was to elucidate how age and aging shape the experiences of oldest-old spousal caregivers of people with dementia.

We used a narrative gerontology approach, with 2-3 semistructured interviews with 11 caregivers ages 80-89 (25 interviews in total). We analyzed narrative data thematically.

We identified 4 main themes representing caregivers' perceptions of age or aging: aging as decline, aging as life experience, doings in older age, and older age as perceived by others. Our results illustrate a breadth of age- and aging-related caregiving experiences stemming from each perception.

This study provides insight into the particular experiences of oldest-old spousal caregivers of people with dementia and provides a foundation for critical future research that will continue to explore the experiences of this unique and fast-growing caregiving group. A more nuanced understanding of this caregiving subgroup is needed to develop age-sensitive health and social care services to meet their needs and, ultimately, improve their well-being and that of their spouses.