Cultural Understandings of Dementia in Indigenous Peoples: A Qualitative Evidence Synthesis

Abstract

RÉSUMÉLes démences liées à l’âge constituent un problème de santé important au Canada, en particulier chez les communautés autochtones, où les taux de démences surpassent d’environ 34 % ceux retrouvés dans la population canadienne. Cette étude présente une synthèse des données qualitatives tirées des articles traitant de la compréhension culturelle des démences chez les peuples autochtones du Canada. Les résultats principaux suggèrent que peu de recherches ont été effectuées dans ce domaine, en particulier chez les Inuits et les Métis, malgré une progression de l’exploration de ce sujet au Canada. La synthèse de la littérature a révélé que la démence est perçue comme une partie naturelle du cycle de vie par de nombreux Autochtones. Bien que les modèles communautaires et informels de soins soulèvent d’importants défis pour les aidants naturels, ils sont régulièrement appliqués. Cette synthèse sera utile pour les organismes et les prestataires de soins de santé qui recherchent des approches appropriées pour répondre aux besoins des patients et des familles autochtones aux prises avec la démence.

Race- and Sex-Based Disparities in Alzheimer’s Disease Clinical Trial Enrollment in the United States and Canada: An Indigenous Perspective

“…We used the terms "Alzheimer's Disease", "Dementia", and "Memory Loss" for the Condition or Disease title in combination with "Indigenous", "Aboriginal", "First Nation", "Metis" and "Inuit"; here we found no ongoing clinical trials [43]. This lack of enrollment within Canada for AD specific RCTs reflects a deep-seated problem within the Indigenous communities as far as basic access to medical care and the proper knowledge of, diagnosis and treatment of AD, required before any enrollment into an RCT can occur [91][92][93][94][95][96][97][98]. According to the National Aboriginal Health Organization, "Aboriginal peoples have been studied to death, and many are disillusioned by research reports published by people who don't know much about their lives and have little concern about the impact of the results on their community" [97].…”

“…Since Indigenous elders are among the most at risk and frail of the population, their AD numbers are expected to increase. One estimate indicates that ADRD cases are expected to increase by 3.3-fold in the Inuit and 4.2-fold (with increases to 4.8-fold on reserves) in First Nations by 2031 from 2006 levels [91,92]. In a report on the Six Nations of Ontario in 2014 on ADRD, caregivers from the medical community suspected that 25% of their patients had AD; however, effective training of clinical staff in the diagnosis and treatment of AD and a definitive diagnosis from a doctor is lacking in many communities [93].…”

“…Memory loss. On reserves in particular, memory loss associated with AD is often considered a "normal part of aging", a part of the "circle of life", or a "return to childhood" [92,93]. So long as there is no title attached to memory loss (such as "Dementia" or "Alzheimer's Disease"), there is no stigma associated with it.…”

“…Other risk factors. Other AD risk factors affecting the First Nations, Metis, and Inuit in Canada include high cholesterol, CVD, hypertension (high blood pressure), lack of immunizations, poor dental health, depression, reduced education, post-traumatic stress, alcohol, poor diet, and exposure to toxins [91,92,95,96].…”

“…75% of unpaid caregivers for people with chronic debilitating diseases such as dementia are women [123]. This caregiver burden is associated with lower rates of employment and an increased prevalence of psychological AD risk factors, such as sleep disorders and depression, in women caregivers as compared to male caregivers [92,123]. Dementia care, compared to caregiving for other illnesses, is a particularly demanding form of caregiving.…”