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

Abstract

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.

Keywords:

• Narrative identity
• qualitative methods
• narrative therapy
• mental health

Disclosure statement

No potential conflict of interest was reported by the author(s).

This study was supported, in part, by the Yale Claude D. Pepper Older Americans Independence Center (P30AG21342). Dr. E. L. Mroz and Dr. T. Ali are supported by the National Institute on Aging (NIA) Institutional Training Grant (T32AG019134).