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. 2023 May;71(5):1495-1504.
doi: 10.1111/jgs.18209. Epub 2022 Dec 26.

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

Emily L Mroz  1 , Amanda Piechota  2 , Talha Ali  1 , Tara D Matta-Singh  3 , Anissa Abboud  4 , Shubam Sharma  5 , Marney A White  6 , Terri R Fried  1 , Joan K Monin  2
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"Been there, done that:" A grounded theory of future caregiver preparedness in former caregivers of parents living with dementia

Emily L Mroz et al. J Am Geriatr Soc. 2023 May.

Abstract

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.

Keywords: Alzheimer's disease and related dementias; caregiving trajectories; narrative identity; qualitative research; self-efficacy.

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Conflict of interest statement

Conflict of Interest: The authors have no conflicts of interest to disclose.

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Depiction of grounded theory of future caregiver preparedness in former caregivers of persons living with dementia
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