Exploring the experiences and perceptions of disease‐modifying treatments among Canadians affected by dementia
Bibliographic record
Abstract
BACKGROUND: Discourse on disease-modifying treatments (DMTs) for dementia has primarily focused on drug development, health system readiness and health care professional perspectives. There is a paucity of research focused on public perceptions held by Canadians towards these treatments. Focus groups were conducted in British Columbia and Ontario, Canada with people affected by dementia to gain an in-depth understanding of their experiences with and perceptions of DMTs. METHOD: Between February and December 2024, the Alzheimer Society of B.C. (ASBC) and the Alzheimer Society of Ontario (ASO) held a series of separate focus groups. ASBC conducted four online focus groups with eight persons living with dementia and nine care partners, none of whom were enrolled in DMT clinical trials. ASO conducted three in-person and two online focus groups with people living with dementia (n = 12) and their care partners (n = 11) enrolled in DMT clinical trials. Focus groups ranged from 90-120 minutes and consisted of questions exploring treatments, risk tolerance and the role of our organizations to support patient navigation for DMTs. Data were analyzed using thematic analysis. RESULT: Focus group participant experiences ranged depending on disease progression. Four themes were identified. The first, equitable access to DMTs, highlighted concerns around financial hardship, geographic limitations and the critical importance of care partner support. The second, risk tolerance, underscored differences in risk acceptance among people living with dementia and their care partners, and the variation across disease stage. The third, clear and accessible information, focused on the need for comprehensive, transparent and easy-to-understand material to ensure informed DMT decision-making. The final theme, DMTs as a source of hope, acknowledged the motivational role of clinical trials and DMT approvals symbolizing innovation and the potential for an eventual cure. ASBC and ASO were identified as trustworthy and important sources of support for DMT navigation. CONCLUSION: Findings identify priority areas for people affected by dementia once DMTs become available in Canada. Collaborating with people with lived experience in the development of DMT care pathways will help to ensure that treatment options are accessible, deliver meaningful benefits to extend quality of life and improve quality of 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 | 0.005 | 0.010 |
| Meta-epidemiology (narrow) | 0.001 | 0.001 |
| Meta-epidemiology (broad) | 0.001 | 0.001 |
| Bibliometrics | 0.002 | 0.003 |
| Science and technology studies | 0.021 | 0.009 |
| Scholarly communication | 0.005 | 0.002 |
| Open science | 0.002 | 0.005 |
| Research integrity | 0.002 | 0.004 |
| 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".