"You Have to Be There": Emotional Labor, Cultural Ethics, and the Realities of Black Families of people with Dementia in Canada During COVID-19.

The prevalence of dementia among Black families of African descent in Canada is projected to rise by 507%, according to The Many Faces of Dementia in Canada report. Despite this forecast, there remains a significant empirical gap regarding the lived realities of Black individuals with dementia and their care partners. This study addresses that gap by exploring the everyday realities of dementia care within Black communities in the Greater Toronto and Hamilton Area, particularly during the COVID-19 pandemic. Utilizing a qualitative interpretive lens, the study purposively sampled 24 participants (12 older adults with moderate dementia and their 12 care partners) for in-depth, dyadic interviews. Data were analyzed thematically using a reflexive lens. Findings indicate that care partners, whether care partners or healthcare professionals, take on extensive responsibilities in decision-making, daily care provision, and emotional support, which are shaped by pre-existing systemic inequities, including exposure to racial discrimination, and inadequate access to culturally responsive services. The pandemic further intensified these stressors, yet participants demonstrated resilience by drawing on communal resources and informal networks. The findings revealed that care-partners of people with dementia operate within a system that both relies on and marginalizes their labour. Yet, care-partners resisted these exclusions through collective resilience and community-based strategies. This study advocates for improving equitable access to services, reducing systemic barriers that delay recognision, and acknowledging the essential contributions of Black care-partners in Canadian caregiving framework.