Examining End-of-Life Experiences of Family Caregivers for People Living with Dementia During Covid-19: An Interpretive Description Study
Date
2021-08
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Abstract
Family caregivers of people living with dementia (PLWD) are key participants in determining and carrying out end-of-life care for PLWD. In an effort to contain the spread of Covid-19, public health restrictions, such as no visitation in care settings, were enacted which had the potential to severely impede the family caregiver’s role in providing end-of-life care. This study aims to determine the experiences of family caregivers who provided end-of-life care to PLWD during Covid-19. To examine these experiences, the qualitative method of interpretive description was utilized. Family caregivers in Alberta, Canada were invited to participate in an online survey to examine their caregiving experiences during the Covid-19 pandemic, with the option of participating in a follow-up focus group. Sixteen FCGs whose family members with dementia died during the pandemic participated in the survey. A follow-up focus group (n=3) was conducted virtually to further examine how Covid-19 policies impacted their role as a caregiver for the PLWD in long-term care and affected the family caregiver’s ability to grieve. The results of the survey and virtual focus group suggest that a lack of role clarity and inadequate communication channels between the family caregivers and long-term care centers due to Covid-19 increased the strain family caregivers faced during end-of-life care. Participants also expressed frustration regarding their inability to communicate with the PLWD due to public health restrictions. Additionally, participants felt that protocols related to visitation were unclear. At the end of life, public policies, such as reduced or no visitation, led to feelings of chronic grief. Several participants also expressed appreciation for having previously completing advance care planning documentation prior to Covid-19. Family caregivers also felt that the limitation on gatherings negatively impacted their ability to grieve and organize adequate funeral services for the PLWD.
Based on these results, policymakers can help ease the increased challenges faced by family caregivers during end-of-life care in future public health emergencies by involving family caregivers of PLWD in the decision-making process. The completion of advance care planning documentation can also ease the burden family caregivers may experience prior to and during end-of-life care.
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Keywords
family caregiver, people living with dementia, Covid-19, end-of-life care, long-term care, advance care planning
Citation
Mithani, S. A. (2021). Examining End-of-Life Experiences of Family Caregivers for People Living with Dementia During Covid-19: An Interpretive Description Study (Master's thesis, University of Calgary, Calgary, Canada). Retrieved from https://prism.ucalgary.ca.