Views of First Nation Elders on Memory Loss and Memory Care in Later Life

Abstract

Little is known about Indigenous communities and dementia and Elders have not been involved as advisors or participants in most research to date. This exploratory research sought to address this gap through a constructivist grounded theory project on the views of First Nation Elders on memory loss and memory care in later life, conducted in collaboration with decision-makers from the local Health Authority and Elders from three First Nation communities in British Columbia, Canada. Elders served as advisors to this research and research agreements were negotiated and signed with each community. Data collection occurred through a series of sharing circles and interviews with a total of 21 Elders, four of whom were experiencing memory loss, and two community members. Four themes arose through the constant comparative data analysis process: Being Secwepemc, growing older, losing memory, and supporting one another. These themes indicate that memory loss and memory care in First Nation communities has changed over the past century, including the causes attributed to memory loss in later life and community responses to those affected. Elders hold differing views about memory loss, including the traditional--'going through the full circle' [of life]--and the shémá [white] way--'your dementia', with the latter being much more common. This research indicates the importance of protecting and reviving traditional knowledge and ways of life in order to prevent 'your dementia' and avoid the adoption of health care practices that may be culturally unsafe for First Nation Elders.

An Approach to Improve Dementia Health Literacy in Indigenous Communities

“…The findings from the Perceptions Project and the literature review found that Indigenous cultural and Western understandings of dementia differ. Most Indigenous people accept memory loss and confusion as a normal part of the aging process and these understandings are intimately connected to Indigenous values and worldviews (Hulko et al 2010;Jacklin et al 2014aJacklin et al , 2014bJacklin et al , 2014cJacklin et al 2013b;Jacklin et al 2013c;Lanting et al 2011;Pace et al 2013). In the environmental scan, the authors found that many of the resources developed by Alzheimer's organizations described dementia as an irreversible disease affecting the brain, causing deterioration of memory and the ability to think; and is also described as causing behavior and emotional changes that interfere with the person's social and work life (Alzheimer Society of Canada 2010).…”

“…The results suggested that the term dementia may or may not be an accepted or conceptually understood term for all Indigenous people (Hulko et al 2010;Sutherland 2007), and that there may be some underlying shame or stigma associated with the disease (Pace et al 2013). Furthermore, there is an absence of the word "dementia" in Indigenous languages.…”

“…Both the Perceptions Project and literature review found that colonialism and racism remain pervasive issues in the lives of Indigenous people in Canada, often resulting in some individuals being "out of balance" physically, emotionally, mentally, or spiritually. It has been documented that changes to Indigenous lifeways and culture have changed conceptions of dementia and aging overtime (Hulko et al 2010;Lanting et al 2011;Pace 2013;Wilson et al 2011). These changes include collective suffering and historical trauma from the consequences of colonization and loss of connection to the land (Arkles et al 2010;Mundel and Chapman 2010;Wilson et al 2011).…”

“…In many cases, Indigenous peoples connect memory loss and confusion associated with aging as "normal," "natural," and "accepted" (Jacklin et al 2015a), or "supernormal" (Henderson and Henderson 2002). Dementia knowledge associated with Western biomedical definitions may also be present (Hulko et al 2010).…”

The Path of Creating Co-Researchers in the File Hills Qu'Appelle Tribal Council

“…Todd Cappo, the community health program coordinator at FHQTC Health Services, explained this role as: "One that understand[s] our ceremonies, the value of our culture, and our medicines." Knowledge Keepers provide a link between the past and present, creating a sense of cultural continuity despite ever-changing community health needs and responses (Hulko et al, 2010).…”