Human rights of persons with dementia and their care partners: An exploratory study
Bibliographic record
Abstract
• Respect for human rights represents an adversity for persons living with dementia. • This study highlighted the existing challenges intensified by the pandemic. • The experiences in Quebec, Ontario, Saskatchewan, and Alberta provinces were similar. • It is key to maintain access to care and empower PLWD and care partners. • Healthcare systems should be prepared to guarantee non-discriminatory practices. Background: Human rights concerns are well documented in the care for persons living with dementia (PLWDs), who often face isolation, exclusion, abuse, injustice, and marginalization. Aim: This study explored the experiences of PLWDs and their care partners (CPs) with health and social services in Canada during the COVID-19 pandemic, through a human rights lens. Methodology: A qualitative multiple case study using a participatory approach was conducted between April 2022 and April 2023. Semi-structured interviews were held with 11 PLWDs and 55 CPs across Quebec, Ontario, Saskatchewan, and Alberta. Guided by the World Health Organization Framework on human-rights for PLWD, a hybrid thematic analysis was conducted within each province, followed by cross-provincial synthesis. Results: Four major themes were identified: 1) Health and social care professionals’ practices and behaviors; 2) Care partners’ role and burden; 3) Unpreparedness of the healthcare system; 4) Public health measures. Conclusion: PLWDs experienced widespread rights violations, largely due to the cognitive nature of the illness. Despite regional differences, a shared experience of rights infringement was evident. Findings underscore the need for meaningful involvement of PLWDs and CPs in care decisions, accessible rights education, and sustained access to services. Tailored policies must address the needs of PLWDs and CPs, and decision-makers should carefully weigh the risks and benefits of allowing CPs into care facilities.
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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 | 0.007 | 0.011 |
| Meta-epidemiology (narrow) | 0.001 | 0.001 |
| Meta-epidemiology (broad) | 0.001 | 0.000 |
| Bibliometrics | 0.002 | 0.003 |
| Science and technology studies | 0.019 | 0.009 |
| Scholarly communication | 0.006 | 0.005 |
| Open science | 0.002 | 0.009 |
| Research integrity | 0.002 | 0.004 |
| Insufficient payload (model declined to judge) | 0.004 | 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".