Former dementia caregivers' high and low point narratives: what is remembered, and how is it shared?

OBJECTIVES: To characterize core themes conveyed by caregivers when sharing narratives of high and low caregiving points and to describe how caregivers structured these narratives. METHODS: Using consensual qualitative research and thematic analysis, high and low point narratives from 32 former caregivers of persons living with dementia were examined. RESULTS: High point narrative themes involved strengthening relationships with care partners, fulfillment derived from care, lighthearted moments, and fostering the care partners' joy and dignity. Low point narratives involved family conflict and lack of support, personal deficiencies, loss of the caregivers' 'pre-caregiving' life, health system failures, and alienation from their care partner. Across high and low points, caregivers' narratives were structured by three types of narrative elaborations; details unnecessary for factual recall but which enriched narrative sharing. CONCLUSION: Themes across high and low point narratives encompassed relational issues, how caregiving shaped the caregiver's self-efficacy, and factors that made navigating caregiving easier or more difficult. Both high point and low point narration often involved describing positive aspects of caregiving (PAC). Narrative elaborations may be used by former caregivers to engage in deeper evaluation of their caregiving experiences. We consider how psychotherapeutic techniques can help former caregivers reframe maladaptive narratives, supporting their mental health.

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

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.

"Been there, done that:" A grounded theory of future caregiver preparedness in former caregivers of parents living with dementia.

BACKGROUND: Family caregivers offer essential support to persons living with dementia (PLWD). Providing care for more than one family member or close other across adulthood is becoming increasingly common, yet little is known about the ways that caregiving experiences shape caregiver preparedness. The current study presents a grounded theory of future caregiver preparedness in former caregivers of PLWD. METHOD: A coding team (five coders and two auditors) used Consensual Qualitative Research and grounded theory techniques to analyze transcripts from 32 semi-structured interviews with midlife former caregivers of parents who died following advanced Alzheimer's disease and related dementias. RESULTS: Qualitative analysis revealed two dimensions of future caregiver preparedness: caregiving confidence and caregiving insights. Narratives from caregiving experiences informed participants' descriptions of their future caregiver preparedness. Though some former caregivers described a positive (i.e., boosted or sustained) sense of caregiving confidence following care for their parents, others described a diminished (i.e., restricted or impeded) sense of confidence. Regardless of their confidence, all caregivers described specific caregiving insights related to one or more categories (i.e., caregiving self-conduct, care systems and resources, and relating with a care partner). CONCLUSIONS: Preparedness for future caregiving following recent care for a PLWD varies: For some, past experiences appear to offer cumulative advantages in anticipating future care roles, whereas for others, past experiences may contribute to apprehension towards, or rejection of, future care roles. Entering new caregiving roles with diminished confidence may have negative consequences for caregivers' and care partners' wellbeing. Multidimensional assessment of future caregiver preparedness in former caregivers of PLWD may support development of resources for former caregivers entering new caregiving roles.