Perceptions of Alzheimer's Disease and Related Dementia among Aboriginal Peoples
in Ontario (2009 - 2014)
Led by Drs. Kristen Jacklin and Wayne Warry, the purpose of this research was to speak with Indigenous people with dementia, their caregivers, healthcare practitioners and other key informants in order to gain knowledge about the attitudes, beliefs and behaviours related to Alzheimer’s disease and other dementias in diverse Indigenous communities in Ontario. A qualitative research approach was used that was mindful and respectful of Indigenous methods of gathering information. A community-based research design was employed that involved partnerships with Indigenous communities on the design, development and implementation of the research protocol. Community members guided the development of funding proposals, key questions, methodologies and data analysis. Ultimately, several methods were used to develop this knowledge, including interviews, focus groups, and participant observation.
Participants were recruited in six areas:
The First Nations of Manitoulin Island
Moose Cree First Nation
Western understandings of dementia are presented as a backdrop to local perceptions concerning the symptoms and meaning of dementia, practices relating to detection, treatment and care, and healthy aging. We examined our participants’ understandings of the causes of dementia and what dementia means in their communities. We also presented our findings related to local strengths in coping with dementia, as well as indicating barriers to dementia detection, and care and service needs within the community.
This project was funded by The Alzheimer's Society of Canada ASRP awards and the Ontario Mental Health Foundation.