Date Presented 04/02/2022

Now what? In my work with caregivers, this is a question that comes up again and again from dementia caregivers after the person they have cared for passes away. I joined them in wondering what life looks like as one transitions out of a role that dominated much of one’s everyday life. To truly provide meaningful supports and services throughout the entirety of the caregiver journey, it is essential to understand the experience of caregivers during both active caregiving and bereavement.

Primary Author and Speaker: Julie Silver Seidle

PURPOSE: Informal caregivers of individuals with dementia face many challenges throughout their caregiver journey. While attention has been given to how dementia caregivers face these challenges during the active phase of caregiving, less is known about the experience of caregivers following the death of their loved one. This study explores the experience of spousal dementia caregivers to better understand resilience within the context of the bereavement phase of the caregiver journey.

DESIGN: We used a phenomenological approach to explore resilience of spousal dementia caregivers through a first-person account of their lived experience. Ten women, ages 62-85, participated in this study. Each was a primary caregiver to a spouse with dementia who had passed away at least six months prior. Purposive criterion sampling was used to recruit women and men from local, state, and national organizations specializing in dementia. Snowball sampling was used to recruit four out of the ten participants.

METHOD: We used semi-structured interviews with open-ended questions to capture caregiving experiences via two one-hour interviews. We probed experiences during both active caregiving and bereavement. The first three participants completed face-to-face interviews prior to the COVID-19 pandemic, with the remaining seven completing virtual interviews over Zoom®. All interviews were audio recorded and transcribed verbatim. Transcripts were coded and analyzed using a thematic analysis approach.

RESULTS: While acknowledging fluctuations in everyday resilience, all caregivers reported feeling overall resilient as they reflected on their caregiver journey, including bereavement. During discussions of the bereavement phase of the caregiver journey, all caregivers expressed concepts related to resilience in ways that linked those concepts closely to ordinary aspects of their everyday lives. The most common aspects of everyday experience identified were activities (e.g., walking the dog, having coffee with a friend, playing pickleball), roles (e.g., friend, grandmother, volunteer), and relationships with family and friends. As a result, two overarching themes emerged: challenges and supports to resilience.

CONCLUSION: Our findings demonstrate that 1) the caregiver journey does not end when the person with dementia dies but, rather, ushers in the final phase of the caregiver journey and 2) resilience is shaped by everyday contexts. For these caregivers, resilience is rooted in everyday experiences. Enhanced understanding of resilience in the context of the bereavement phase of the caregiver journey is essential for providing meaningful supports and services to caregivers throughout the entirety of the caregiver experience.


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