On World Alzheimer’s Day 2019, ADI released the World Alzheimer Report 2019: Attitudes to dementia. Within the report, there are number of chapters that highlight some of the challenges and innovative responses to dementia within Indigenous populations around the globe.
Kristen Jacklin, Professor of Medical Anthropology at the University of Minnesota Medical School Duluth and Karen Pitawanakwat, Registered Nurse and Community Researcher for Naandwechige-Gamig Wikwemikong Health Centre and member of the WikWemikong Unceded Reserve, contributed this piece that underlines the necessity in understanding the experiences of dementia within Indigenous communities in order to meet dementia care needs in a culturally appropriate way.
Karen Pitawanakwat writes: “I want to introduce the concept of the circle of life as it relates to four of our seven grandfather teachings. Our elders are living in their seventh stage of life. They have a lifetime of wisdom that is respected. Interactions with an elder instinctively show kindness and love. We are a humble people who value our time walking here upon the earth as a spiritual collective to learn and share for the benefit of seven generations who will walk the same earth ahead of us. In an elders last stage they are transitioning back into the spiritual world, part of the continuum of life.”
We have been involved in dementia research with Indigenous communities for over 10 years. Our work on this topic began in 2007 when Indigenous community leadership from health centres across Ontario, Canada, began noticing more cases of dementia in their communities. Through discussions with key stakeholders, it was quickly realised that the dementia care needs of Indigenous people were distinct and required deep understanding of Indigenous culture, language and experience to be met effectively. Importantly, it was clear, very early on, that Indigenous knowledge concerning dementia was at odds with biomedical understandings and this was leading to culturally unsafe dementia care. The experience of dementia in Indigenous communities was gentler and showed a greater acceptance of the illness and its symptoms. These early discussions with communities sparked for us a long-term commitment to community based research aimed at understanding experiences of dementia in Indigenous populations with the aim of translating these research findings into information that can help communities and providers plan and respond to Indigenous dementia care needs in culturally appropriate ways.
Our research on this topic in Canada has revealed many commonalities concerning experiences with dementia across diverse Indigenous peoples. We have been gifted with stories from Elders, Knowledge Keepers, people with dementia, their caregivers and formal care providers. This research, coupled with a handful of other such studies in Canada, allows us to cautiously put forward a collective narrative of the dementia experience for Indigenous peoples in Canada. Cautiously, because we must recognise that although we have uncovered common experiences and beliefs, the cultures, languages and experiences of Indigenous peoples in North America are diverse. We also must recognise that the well-being of Indigenous people in Canada has been severely undermined by colonialism, contemporary structural violence, and the resulting intergenerational trauma. Varying impacts of colonialism also contribute to diversity in experiences.
What has been shared with us suggests that Indigenous people understand dementia as something that some people get when they get old. It is thought to be normal, natural and part of the ‘circle of life’ or ‘coming full circle’. This understanding is rooted in Indigenous knowledge frameworks and cultural teachings; that is to say, this is not a simplified understanding of a complex disease; to the contrary, the perspective is formed on the basis of Indigenous science, spirituality and culture. The cultural framework that leads to an understanding of dementia as part of the circle of life also leads to a greater acceptance of the illness. In this regard the behaviours associated with Alzheimer’s and dementia, especially in the later stages, are understood in relation to Indigenous teachings.
The Indigenous Cognition and Aging Exchange (I-CAARE), founded by Kristen Jacklin, aims to raise awareness about cognitive health within Indigenous communities through research and resources. You can follow I-CAARE’s latest research updates and news on Twitter.
Memory Keepers Medical Discovery Team is a team of researchers and specialists, including Kristen Jacklin, who are focused on understanding diabetes and dementia as “interacting conditions among people living in tribal and rural communities. Read more about their current research here.