Personal Health Planning in Adult-Child Former Caregivers of Parents Living With Dementia

Abstract

Purpose To examine how former caregivers for parents living with dementia engage in personal health planning. Design An inductive, qualitative study. Setting Virtual, audio-recorded, semi-structured interviews. Participants Thirty-two midlife former primary caregivers for parents who died following advanced dementia 3 months to 3 years prior. Method Participants responded to a series of open-ended interview prompts. Interview recordings were transcribed and evaluated by a trained, diverse team to generate Consensual Qualitative Research (CQR) domains and categories. Results Caregivers developed health planning outlooks (ie, mindsets regarding willingness and ability to engage in personal health planning) that guided health planning activities (ie, engaging in a healthy lifestyle, initiating cognitive/genetic testing, maintaining independence and aging in place, ensuring financial and legal security). An agentic outlook involved feeling capable of engaging in health planning activities and arose when caregivers witnessed the impact and feasibility of their parents’ health planning . Anxiety-inducing and present-focused outlooks arose when caregivers faced barriers (eg, low self-efficacy, lack of social support, perception that parent’s health planning did not enhance quality of life) and concluded that personal health planning would not be valuable or feasible. Conclusion Caregiving for a parent living with dementia (PLWD) shapes former caregivers’ personal health planning. Interventions should support former caregivers who have developed low self-efficacy or pessimistic views on healthy aging to support them in addressing health planning activities.