KNOWLEDGE NEEDS AND GAPS RELATED TO DEMENTIA CARE IN INDIGENOUS SETTINGS Alzheimer’s disease and agerelated dementia resources and health promotion materials tailored to meet the needs of Indigenous populations are often requested by caregivers, older adults, nurses, personal support workers, and researchers (Jacklin et al., 2014a, 2014b, Pace et al., 2013); yet, culturally appropriate resources are often lacking, especially in more isolated and remote locations (Finkelstein et al., 2012; Forbes et al., 2013; Jacklin & Chiovitte, 2020; Webkamigad, 2017). Addressing gaps in knowledge can help build caregiver capacity and enhance responses to dementia at various potential intervention points in the disease’s development, including preventing dementia, promoting healthy aging, encouraging early diagnosis, improving dementia literacy, delaying the progression of symptoms, enhancing quality of care and life, supporting caregivers, and preventing caregiver burnout (Jacklin & Chiovitte, 2020). This section discusses the knowledge needs of Indigenous dementia patients and caregivers, healthcare providers, community members,
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and program developers and policy makers identified in the literature. While some of the knowledge needs span multiple target audiences, others are unique to specific groups. This section also discusses any existing gaps in knowledge that need to be addressed through research to improve optimal care and the development of culturally appropriate dementia education resources and programs.
Knowledge needs and gaps of Indigenous dementia patients and informal care providers Given Indigenous Peoples’ preference for informal family care for individuals experiencing cognitive decline, and their holistic perceptions of aging well, more culturally appropriate education and training resources are needed with respect to dementia and dementia care to provide optimal care and promote health and well-being. Lack of knowledge about dementia and available supports and services in Indigenous communities can result in late interventions
for dementia patients and underutilization of available supports by caregivers who may not know that supports exist (Alcock, 2019; Finkelstein et al., 2012). The literature review identified a paucity of studies that explicitly aimed to identify knowledge needs and gaps of First Nations, Inuit, and Métis dementia patients and their caregivers, and the few that did so focused on the knowledge needs of First Nations only. For example, Abram et al. (2012) aimed to assess the health information needs of healthcare practitioners, caregivers, and dementia patients in one onreserve First Nations community; the work of Jacklin and colleagues (see for example, Jacklin et al., 2014b) examined the knowledge needs of several First Nations communities in Ontario; and Stevenson et al. (2015) examined the knowledge needs of informal caregivers and family members with EOFAD in one Tahltan community in BC. In the “Living with Dementia in Rural First Nations Communities: A Health and Wellness Project,” students
