Examining End-of-Life Experiences of Family Caregivers for People Living with Dementia During Covid-19: An Interpretive Description Study
Bibliographic record
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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How this classification was reachedexpand
Full frame machine prediction
Teacher imitationNot calibrated prevalence, not ground truth. Human validation pending. The Gemma side is a direct model label for every work in the frame, read from the title-only record. The Codex side is a classifier learned from the 10,348 direct Codex labels and calibrated to design-weighted sample rates; fields without enough sample support carry no Codex call. Candidate is the union of the two sides; consensus is their intersection. These outputs are machine_predicted_unvalidated and are not human labels.
Distilled classifier scores by category (both heads)
| Category | Codex | Gemma |
|---|---|---|
| Metaresearch | 0.018 | 0.029 |
| Meta-epidemiology (narrow) | 0.001 | 0.001 |
| Meta-epidemiology (broad) | 0.001 | 0.001 |
| Bibliometrics | 0.003 | 0.002 |
| Science and technology studies | 0.009 | 0.009 |
| Scholarly communication | 0.006 | 0.005 |
| Open science | 0.002 | 0.007 |
| Research integrity | 0.002 | 0.003 |
| Insufficient payload (model declined to judge) | 0.001 | 0.000 |
Machine scores (provisional)
The two teacher heads of the student model, read on this work. A score orders the frame for review; it never asserts a category, and the validation status ships verbatim with every row.
Baseline scores from an immature model (maturity gate not passed, 7 training rounds). Scores rank; they never assert a category.
score_only:v0-immature-baseline · verbatim from the scoring run: score_only means the number may rank works, and no category label ships from itClassification
machine, unvalidatedMachine predicted; a candidate call from one source (direct Gemma or distilled Codex), not a consensus.
How this classification was reached, model by model and score by score, is at the end of the page under "How this classification was reached".