Caregiving for People with Lewy Body Dementia During A Pandemic: A Qualitative Analysis of Caregivers who Completed Resilience Coaching

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Abstract

Background

The Activity Theory of Aging suggests sustained activity aids older adults to maintain high quality of life. Caregiving resilience coaching like the Dreaming Together (DTog) program may have helped caregivers for people with Lewy body dementia (LBD) sustain supportive activity throughout challenges from caregiving and pandemics.

Objectives

To determine experiences and attitudes on sustaining activities during the COVID-19 pandemic of LBD caregivers participating in caregiving resilience coaching two years into the pandemic.

Methods

13 participants (10 female; age=67.7 (9.9) years; Caregiver Quality of Life score=36 (12.9), “good”; Zarit Burden Interview score=72 (18.8), “mild to moderate”) were recruited to participate in an Exit Interview held over Zoom right after DTog completion, between February and August of 2022. Participant responses were coded into themes through NVivo 12 software, for analysis relative to the Activity Theory of Aging.

Results

Main themes: 1) Technology: An imperfect solution to social isolation; 2) Self-care is a necessity even during a crisis; 3) Caregivers Report A Reinforcing Negative Cycle of Declining Care Recipient Health and Adaptability.

Conclusion

LBD caregivers, after completing the DTog resilience coaching program, maintained self-care activities that improved life satisfaction. Programs and studies promoting resilience-building activity should be considered to supporting LBD caregiving.

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