Dementia Dastan: Understanding the Experiences of South Asian Canadians Living with Dementia and their Care Partners

Abstract

Abstract

Introduction As Canada faces the growing challenge of dementia, there is an urgent need to ensure that care and support systems are responsive to the country’s increasingly diverse population. While Canada’s multicultural landscape has shaped many aspects of healthcare, the specific needs of diverse communities, such as South Asian Canadians, remain insufficiently addressed. Cultural stigma, language barriers, and a lack of culturally tailored resources continue to delay dementia recognition, diagnosis, and access to appropriate care for many in this population. While some experiences of individuals living with dementia and their care partners, such as navigating healthcare systems and dealing with the emotional toll of caregiving, are common across communities, South Asian Canadians face additional culturally specific challenges. These include stigma rooted in cultural beliefs, language barriers, and limited access to services designed to align with their cultural values. Despite strong caregiving traditions within South Asian families, limited Canadian research examines both the shared and culturally specific aspects of their experiences. This thesis examines the lived experiences of individuals with dementia, their care partners, physicians diagnosing dementia, and employees of community support organizations to identify barriers, strengths, and strategies for improving culturally inclusive dementia care while highlighting universally shared experiences.

Methods This research employs a qualitative, interpretive phenomenological approach through three interconnected studies conducted across Canada in Alberta, British Columbia and Ontario. Study 1 examines the experiences of 16 participants (14 care partners and two individuals living with dementia) across the stages of recognizing symptoms, obtaining a diagnosis, and accessing services. Study 2 examines the perspectives of 13 physicians on diagnosing dementia in South Asian Canadians, while Study 3 gathers the insights of 14 employees from community support organizations that provide dementia services. Semi-structured interviews were conducted in English for Studies 2 and 3 and in English, Hindi, and Punjabi for Study 1. Reflexive thematic analysis was applied to identify recurring and distinct themes across participant groups.

Results Key findings are organized into themes within each study. Study 1 identified barriers and stigma in recognizing dementia, challenges in obtaining a diagnosis, accessing services post-diagnosis, and transitioning to long-term care. Cultural beliefs often delay symptom recognition, while stigma prevents families from seeking early intervention. Limited familiarity with healthcare systems and a lack of culturally sensitive resources further complicates the care process. Study 2 revealed themes related to barriers to dementia diagnosis, cultural and generational influences, communication and disclosure, and the improvement of inclusivity and resources. Physicians highlighted language barriers, cultural sensitivities, and the absence of tailored diagnostic tools as significant challenges. Study 3 identified themes of cultural sensitivity in service delivery, engaging with South Asian communities, challenges in delivering services, and future directions. Community support employees emphasized the importance of cultural humility, trust-building, and partnerships with cultural organizations while noting systemic funding gaps.

Conclusion This research demonstrates the critical need for integrating culturally sensitive care into dementia care practices and policies to address the unique barriers faced by South Asian Canadians. Findings underscore the importance of early and accurate diagnosis, community engagement, and the development of culturally and linguistically tailored resources to support families. Strong familial networks and caregiving traditions within South Asian communities can serve as foundations for interventions that enhance access to services and reduce stigma. Systemic changes, including increased funding for the development and implementation of culturally sensitive resources and programs, are essential to achieving equitable dementia care. By addressing cultural and systemic barriers, this thesis contributes actionable insights that aim to inform dementia care that meets the needs of Canada’s increasingly diverse population.