A narrative inquiry into how oldest-old care-givers of people with dementia manage age-related care-giving challenges

Abstract

Abstract Oldest-old (age 80+) spousal care-givers of people with dementia experience unique challenges and concerns that they attribute to age and/or ageing, including difficulties providing care because of physical, cognitive or sensory decline; having fewer friends who can provide practical support; and having less energy for non-care-giving activities (e.g. leisure activities, self-care). Previous research on how older care-givers manage is not specific to oldest-old care-givers and may underrepresent their unique experiences managing age and ageing-related challenges. A limited understanding can compromise our ability to tailor services to ageing care-givers. The purpose of this research was to illuminate how oldest-old spousal care-givers of people with dementia manage ageing-related care-giving challenges and the barriers and facilitators to strategy use. The selective optimisation with compensation theory and the transactional theory of stress and coping informed our conceptualisation of management strategies. We used a narrative gerontology approach, with two or three semi-structured interviews with 11 care-givers aged 80–89 (25 interviews in total). Narrative data were analysed thematically. We identified four main themes that encompassed the strategies shared by care-givers: adjusting goals to lessen care-giving demands and to mitigate stress, using alternative means to reach goals and to mitigate stress, enhancing capacities to care and mitigate stress through engagement in non-care-giving activities, and choosing positive attitudes and perspectives to lessen emotional distress. We identified a myriad of facilitators and barriers to strategy utilisation in each theme. The study provides unique insight into care-givers' management strategies, especially in relation to relocation of self and spouse and participation in non-care-giving activities, as well as insight into age-related facilitators and barriers. This research can ultimately help inform the tailoring of age-sensitive health and social care services to meet the needs of this group of care-givers as they age.