Dementia Care is Relational and Communal: Lessons from Indigenous Communities in Canada and the US
Bibliographic record
Abstract
Abstract This paper presents findings from the Indigenous Cultural Understandings of Alzheimer’s Disease and Dementia (ICARE) Project. We share our analysis of qualitative data generated in partnership with four Indigenous communities in Canada and the US. We interviewed dementia program and health care administrators (n = 20) and held sequential focus groups with local health care staff/formal caregivers who work with Indigenous older adults (18 sessions, n = 17) between 2018-2021. Topics focused on the community experience of dementia across the disease trajectory. Four qualitative analysts coded and analyzed data in partnership with PIs, community-based researchers, and senior researchers. The analysis resulted in identifying three key cultural responses communities employ to care for people living with dementia across the disease continuum. First, a relationality perspective that underscores the importance of ongoing care needs rooted in relationship-building through cultural practices such as visiting. Second, community care activates community support systems, prioritizing training opportunities and decentralizing responsibilities and rights to care away from Western institutions. Finally, care models that support and center the family; coordinating with family members across institutions and specialists were a key concern. These findings have been translated into an Indigenous dementia care framework that highlights these three domains and prioritizes strength-based strategies that communities use to mitigate the colonial erasure of Indigenous practices and worldviews. Working with community partners, we have received further feedback on the framework, identifying differences in community uses for the framework and issues that apply more broadly across the four sites for future work.
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How this classification was reachedexpand
Full frame distilled prediction
Teacher imitationNot calibrated prevalence, not ground truth. Human validation pending. Learned from the 10,348 direct Codex labels and 10,348 direct Gemma labels. Candidate is the union of thresholded teacher heads; consensus is their intersection. These outputs are machine_predicted_unvalidated and are not human labels or direct frontier model labels.
Codex and Gemma teacher scores by category
| Category | Codex | Gemma |
|---|---|---|
| Metaresearch | 0.001 | 0.000 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.000 | 0.000 |
| Bibliometrics | 0.000 | 0.001 |
| Science and technology studies | 0.003 | 0.000 |
| Scholarly communication | 0.000 | 0.000 |
| Open science | 0.000 | 0.000 |
| Research integrity | 0.000 | 0.000 |
| Insufficient payload (model declined to judge) | 0.000 | 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 teacher head, 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".