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

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

“How can I be a caregiver for a second time?” A call to action to acknowledge and support experienced family caregivers

“…We call for development of systematic tools to gather this type of data. As a start, we have provided two simple, questionnaire‐style tools used successfully in our existing research 6 for collecting data on past/ present caregiving experiences and anticipated future caregiving experiences (see Tables 1 and 2, respectively). These new foci and additional data collection efforts can critically inform policy and practice, helping us identify and draw strategic boundaries around our presently limitless dependance on family caregivers.…”

“…Across multiple family caregiving roles, caregivers may accrue some specific advantages (e.g., learned caregiving “skills” 6 ) that ease their transition into subsequent caregiving roles. It is also possible that some former caregivers “self‐select” into subsequent caregiving roles, thus entering new roles autonomously and, in turn, harboring a sense of mastery with cascading benefits for the care dyad 7 .…”

“WOOP is my safe haven”: A qualitative feasibility and acceptability study of the Wish Outcome Obstacle Plan (WOOP) intervention for spouses of people living with early‐stage dementia

“…By focusing on themselves, care partners accounted for the role of selfcare in their own happiness and autonomy, as well as their ability to appropriately care for their spouse. Care partners of people living with dementia have described the importance of developing skills to support self-care across the span of caregiving, 43 but have indicated that burdens of caregiving detract from opportunities to learn selfcare strategies. 44 Our study suggests that WOOP may offer a unique opportunity to develop and practice self-care strategies, possibly doing so earlier in the course of caregiving than what commonly occurs.…”

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

“…This study was conducted as part of a larger project examining psycho-behavioral impacts of caregiving experiences for a parent who died following advanced Alzheimer's disease or related dementias conducted virtually with former caregivers. 12 Method and result description followed the COnsolidated criteria for REporting Qualitative research (COREQ) 30 and manuscript development was guided by the ICMJE Recommendations for the Conducting, Reporting, Editing, and Publications of Scholarly Work in Medical Journals. Data collection, data analysis, and write-up of the study findings were completed using the Consensual Qualitative Research (CQR) method.…”

“…10 For example, caregivers of PLWD describe developing self-care competencies during their caregiving experiences. 11,12 Insights related to self-care may expand beyond the caregiving experience, and former caregivers may additionally develop or refine personal health behaviors based on their caregiving experiences. This phenomenon may be particularly pronounced in midlife caregivers, who often take on caregiving roles for older adult parents while experiencing growing impetus to address their own health changes.…”