Surviving spouses' experiences of the end-of-life phase of the dementia journey
Bibliographic record
Abstract
The population of Canada is aging and the main risk factor for developing dementia is age. As dementia is a terminal illness, significant challenges lay ahead for health care systems, health care providers, and families of people with dementia. Spouses of people with dementia are often primary care givers. Their experience is understudied and not well understood. The purpose of this study was to explore the lived experience of spouses as they journeyed through the end-of-life phase of dementia with their partners who resided in long-term care facilities. These spouses were challenged with journeying with their loved ones through the dementia trajectory until death and making ethically complex end-of-life decisions on behalf of their partners.\n\n\t\tHermeneutic phenomenology, as articulated by van Manen, was implemented, to understand the experiences of care partners from couples in which one of the partners had died with dementia in long-term care. Five spouses participated in open-ended, semi-structured research questions delivered through conversational interviews. Themes were revelatory of the spouses’ experiences and included: deficits in education about dementia provided to spouses, deficits in knowledge of health care providers about dementia, relationships of the couples, relationships with health care providers, dignity of the partner, sources of support encountered by spouses on the journey, and end-of-life decisions and outcomes.\n\n\t\tKnowledge of spouses’ experiences contributes to the knowledge of practitioners and may guide development and provision of services, education, governmental policy, policy in health care facilities, and support programs for both partners in couples experiencing dementia.
Fetched live from OpenAlex and de-inverted. Abstracts are not stored in this database: the inverted indexes are 8.6 GB of the frame’s 9.3 GB of text, and the host has 13 GB free.
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 | 0.005 | 0.012 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.001 | 0.001 |
| Bibliometrics | 0.001 | 0.001 |
| Science and technology studies | 0.012 | 0.008 |
| Scholarly communication | 0.006 | 0.005 |
| Open science | 0.001 | 0.008 |
| Research integrity | 0.001 | 0.003 |
| Insufficient payload (model declined to judge) | 0.003 | 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".