Dementia Dastan: Understanding the Experiences of South Asian Canadians Living with Dementia and their Care Partners
Bibliographic record
Abstract
BACKGROUND: Dementia care in Canada must address the unique needs of South Asian Canadians, a growing population facing cultural and systemic barriers. Cultural stigma, language challenges, and a lack of culturally appropriate resources delay dementia recognition, diagnosis, and access to services. These barriers burden care partners, who navigate caregiving within cultural expectations and limited formal support. While some experiences of individuals living with dementia and their care partners are shared across communities, South Asian Canadians face additional challenges, including stigma rooted in cultural beliefs and limited access to culturally aligned services. Despite strong caregiving traditions, there is limited research on shared and culturally specific aspects of their experiences. This research examines the experiences of individuals with dementia, their care partners, physicians diagnosing dementia, and community support organization employees to identify barriers, strengths, and strategies for improving culturally inclusive dementia care. METHOD: A qualitative, interpretive phenomenological approach was used through three interconnected studies conducted in Alberta, British Columbia, and Ontario. Study 1 examines the experiences of 16 participants (14 care partners and two individuals living with dementia) across stages of recognizing symptoms, obtaining a diagnosis, and accessing services. Study 2 investigates the perspectives of 13 physicians on diagnosing dementia in South Asian Canadians. Study 3 captures the insights of 14 employees from community support organizations providing dementia services. Semi-structured interviews were conducted in English, Hindi, and Punjabi, and reflexive thematic analysis was applied to identify recurring and distinct themes. RESULT: Study 1 found barriers to recognizing dementia, challenges in obtaining a diagnosis, and difficulties in accessing services post-diagnosis, which were exacerbated by cultural beliefs, stigma, and unfamiliarity with healthcare systems. Study 2 revealed barriers to diagnosis, cultural and generational influences, and language challenges. Study 3 emphasized cultural sensitivity, trust-building, and the importance of partnerships with cultural organizations while highlighting systemic funding gaps. CONCLUSION: This research demonstrates the need for cultural humility in dementia care practices and policies. Findings underscore the importance of early diagnosis, community engagement, and developing culturally tailored resources to support families. Addressing systemic barriers and increasing funding for culturally sensitive services is essential to providing equitable dementia care for Canada's diverse population.
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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 | 0.004 | 0.005 |
| Meta-epidemiology (narrow) | 0.001 | 0.000 |
| Meta-epidemiology (broad) | 0.001 | 0.001 |
| Bibliometrics | 0.001 | 0.002 |
| Science and technology studies | 0.037 | 0.010 |
| Scholarly communication | 0.006 | 0.002 |
| Open science | 0.002 | 0.008 |
| Research integrity | 0.002 | 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".