Examining First Nations dementia perspectives and wholistic relational supports for culturally safe risk reduction, assessment, and post-diagnosis care in Northwestern Ontario

Abstract

In Canada, the incidence of dementia among First Nations, Métis, and Inuit (FNMI) populations is projected to increase by 273% by 2050, in comparison to 187% among non-FNMI populations. While Canada’s dementia strategy emphasizes improving risk reduction, assessment, and post-diagnosis care, such efforts must be culturally safe. Approaches must respect and reflect FNMI identities, beliefs, knowledge systems, and practices, and support community development and self-determination. Despite this, there is little published research about FNMI cultural perspectives of dementia, including the meaning of symptoms, risk reduction, assessment, and post-diagnosis care. There is also limited research documenting the supports within communities that could support collaborative and self-determined dementia initiatives. This community-based project, in partnership with a regional First Nations-led organization in Northwestern Ontario, aimed to examine the meaning of dementia symptoms, risk reduction, assessment, and post-diagnosis care among FNMI people living in Northwestern Ontario, and the existing supports that may facilitate dementia efforts in this region. Guided by a Nishnaabe research paradigm and a community advisory committee, I conducted knowledge-gathering circles and semi-structured one-on-one and two-on-one in-person and virtual interviews, using a modified photovoice approach, with predominantly First Nation adults (n = 42; Mage = 59, SD = 16.02) residing in rural and urban communities in Northwestern Ontario. Stories and visual images were analyzed using reflexive thematic analysis. Qualitative analysis revealed 14 themes related to the meaning of dementia symptoms, risk factors and reduction strategies, wholistic assessment, post-diagnosis care, and 31 individual, interpersonal, and community-level relational supports. This research will enhance dementia care in Northwestern Ontario and guide future studies in the region, with potential national and international relevance. It also supports the goals of Canada’s dementia strategy by advancing culturally safe approaches to dementia care. Keywords: First Nations health, Indigenous health, dementia, Alzheimer’s disease, asset-mapping