Academic journal article Care Management Journals

Informal Dementia Caregiving among Indigenous Communities in Ontario, Canada

Academic journal article Care Management Journals

Informal Dementia Caregiving among Indigenous Communities in Ontario, Canada

Article excerpt

Recent studies suggest dementia is an emerging health issue for Indigenous peoples in Canada. In this article, we explore findings concerning informal dementia caregiving in Indigenous communities. Our research has been carried out in partnership with Indigenous communities in Ontario, Canada, over the past 4 years. Semistructured in-depth interviews were carried out with informal Indigenous caregivers (primarily family) to Indigenous people with dementia at 7 geographically and culturally diverse research sites (n = 34). We use a critical interpretive and postcolonial lens to explore common caregiving experiences and patterns to gain insight into Indigenous models of care and better understand how to appropriately support Indigenous families dealing with a dementia diagnosis. Themes from the interview data are explored through a storyline beginning with why and how participants came to the caregiving role; the challenges, struggles, and decisions along the way; and reflections on the rewards and benefits of caring for a loved one with dementia. The findings suggest that underlying Indigenous values created a consistent family caregiving model across the Indigenous cultures and geographic contexts included in the study. Family caregiving was found to facilitate cultural continuity through intergenerational contact and the transmission of cultural knowledge. Diverse community contexts presented significant challenges most immediately attributable to the nature of relations between Indigenous and non-Indigenous Canadians and the continued colonial policies governing access to services.

Keywords: dementia; family caregiving; Indigenous health, colonialism, cultural safety

Alzheimer's disease and dementia have been identified as a growing health concern for Indigenous1 peoples worldwide(Jacklin,Walker,&Shawande,2013;Radfordetal., 2015;Smithetal.,2008).Publishedstatisticsabouttheprevalence of dementia in Indigenous people in Canada have only recently becomeavailablebutdataavailablefortheFirstNationspopulationin Alberta, Canada suggest a significant rise in the number ofcasesofdementiadiagnosedoverthelastdecade(Jacklinetal., 2013).Theincreaseincasesofdementiamaybelinkedtoconcurrentlyhighratesofrelatedchronicillnessandriskfactors,demographic transitions resulting in a larger elderly population, and otherIndigenousdeterminantsofhealthsuchasimpactsofhistoricaltrauma,lowincomes,andreducedaccesstohealthcare(Jacklin et al., 2013). The Indigenous population in Canada is young and growing (Statistics Canada, 2010), yet there is also a rapid agingtrend.TheFirstNationspopulationinCanadaisexpected toincreaseby 1.4 timesbetween2006 and 2030 withadisproportionalamountofgrowthamongthoseaged60yearsandolder (anincreaseof3.4times; CaronMalenfant & Morency, 2011). Becauseageremainsthemostsignificantfactorinthedevelopment ofdementia(AlzheimerSocietyofCanada,2010),aconcomitant increaseindementiacasesis expected.Modest projectionsbased ondemographicsalonesuggestthenumberofFirstNationspeople olderthantheageof60yearswithdementiawillincrease4.0-fold by2031comparedtoa2.3-foldincreaseinthenon-FirstNations population(Walker&Jacklin,2015).

The study of dementia in Indigenous communities in North Americahasonlybeguninearnestinrecentyears,andlittleremains documentedintheCanadiancontext.Availableevidencesuggests thatdementiahasnotbeencommoninIndigenouscommunities untilrecently,andcommunitiesnowexperiencingarapidincrease incaseswouldbeintheprocessofnegotiatingexplanatorymodelsofillness(Henderson&Henderson,2002).Inthisarticle,we reportfindingsfromamultisitedstudyofdementiainIndigenous communitiesin Ontariothatincludedinterviewswith informal (primarilyfamily)caregiversforpersonswithdementia.

DrawingonanthropologicalandIndigenousepistemologies, we examine the experiences of Indigenous family caregivers in diversecommunitycontextsatatimewhendementiaisemergingasamoresignificantdiagnosis.Ourtheoreticalgroundings in critical interpretive anthropology, postcolonial theory, and community-based participatory research provide a unique vantagepointfromwhichtoconsiderthecontinuedrolecolonialism2 hasonthelivesofIndigenouspeoplesinCanadaandhowthis relationship with the Canadian government infiltrates the dayto-dayexperiencesoffamilycaregiverstopeoplewithdementia. …

Search by... Author
Show... All Results Primary Sources Peer-reviewed

Oops!

An unknown error has occurred. Please click the button below to reload the page. If the problem persists, please try again in a little while.