Informal Dementia Caregiving Among Indigenous ...

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rural (Wikwemikong Unceded Indian Reserve, United Chiefs and. Council of Mnidoo Mnissing [Manitoulin Island]), and remote. (Moose Cree First Nation).
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CARE MANAGEMENT JOURNALS

Informal Dementia Caregiving Among Indigenous Communities in Ontario, Canada Kristen Jacklin, PhD Northern Ontario School of Medicine, Canada Jessica E. Pace, PhD McMaster University, Ontario, Canada Wayne Warry, PhD Centre for Rural and Northern Health Research, Laurentian University, Ontario, Canada

2ECENTSTUDIESSUGGESTDEMENTIAISANEMERGINGHEALTHISSUEFOR )NDIGENOUSPEOPLESIN#ANADA)NTHISARTICLE WEEXPLORElNDINGS CONCERNINGINFORMALDEMENTIACAREGIVINGIN)NDIGENOUSCOMMU NITIES/URRESEARCHHASBEENCARRIEDOUTINPARTNERSHIPWITH)N DIGENOUSCOMMUNITIESIN/NTARIO #ANADA OVERTHEPASTYEARS 3EMISTRUCTUREDIN DEPTHINTERVIEWSWERECARRIEDOUTWITHINFORMAL )NDIGENOUSCAREGIVERSPRIMARILYFAMILY TO)NDIGENOUSPEOPLEWITH DEMENTIAATGEOGRAPHICALLYANDCULTURALLYDIVERSERESEARCHSITES n ⫽ 7EUSEACRITICALINTERPRETIVEANDPOSTCOLONIALLENSTO EXPLORECOMMONCAREGIVINGEXPERIENCESANDPATTERNSTOGAININ SIGHTINTO)NDIGENOUSMODELSOFCAREANDBETTERUNDERSTANDHOWTO APPROPRIATELYSUPPORT)NDIGENOUSFAMILIESDEALINGWITHADEMENTIA DIAGNOSIS4HEMESFROMTHEINTERVIEWDATAAREEXPLOREDTHROUGH ASTORYLINEBEGINNINGWITHWHYANDHOWPARTICIPANTSCAMETOTHE CAREGIVINGROLETHECHALLENGES STRUGGLES ANDDECISIONSALONGTHE WAYANDREmECTIONSONTHEREWARDSANDBENElTSOFCARINGFORA LOVEDONEWITHDEMENTIA4HElNDINGSSUGGESTTHATUNDERLYING)N DIGENOUSVALUESCREATEDACONSISTENTFAMILYCAREGIVINGMODELACROSS THE)NDIGENOUSCULTURESANDGEOGRAPHICCONTEXTSINCLUDEDINTHE STUDY&AMILYCAREGIVINGWASFOUNDTOFACILITATECULTURALCONTINUITY THROUGHINTERGENERATIONALCONTACTANDTHETRANSMISSIONOFCULTURAL KNOWLEDGE$IVERSECOMMUNITYCONTEXTSPRESENTEDSIGNIlCANT CHALLENGESMOSTIMMEDIATELYATTRIBUTABLETOTHENATUREOFRELA TIONSBETWEEN)NDIGENOUSANDNON )NDIGENOUS#ANADIANSANDTHE CONTINUEDCOLONIALPOLICIESGOVERNINGACCESSTOSERVICES Keywords:DEMENTIAFAMILYCAREGIVING)NDIGENOUSHEALTH COLO NIALISM CULTURALSAFETY

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LZHEIMERS DISEASE AND DEMENTIA HAVE BEEN IDENTIlED AS A GROWING HEALTH CONCERN FOR )NDIGENOUS1 PEOPLES WORLD WIDE*ACKLIN 7ALKER 3HAWANDE 2ADFORDETAL 3MITHETAL  0UBLISHEDSTATISTICSABOUTTHEPREVALENCE OF DEMENTIA IN )NDIGENOUS PEOPLE IN #ANADA HAVE ONLY RECENTLY

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Alzheimer’s disease and dementia have been identified as a growing health concern for Indigenous peoples worldwide.

#ARE-ANAGEMENT*OURNALSs6OLUME .UMBERsÚ3PRINGER0UBLISHING#OMPANY HTTPDXDOIORG  Copyright © Springer Publishing Company, LLC

Indigenous Dementia Caregiving

THATDEMENTIAHASNOTBEENCOMMONIN)NDIGENOUSCOMMUNITIES UNTILRECENTLY ANDCOMMUNITIESNOWEXPERIENCINGARAPIDINCREASE INCASESWOULDBEINTHEPROCESSOFNEGOTIATINGEXPLANATORYMOD ELSOFILLNESS(ENDERSON(ENDERSON  )NTHISARTICLE WE REPORTlNDINGSFROMAMULTISITEDSTUDYOFDEMENTIAIN)NDIGENOUS COMMUNITIES IN /NTARIO THAT INCLUDED INTERVIEWS WITH INFORMAL PRIMARILYFAMILY CAREGIVERSFORPERSONSWITHDEMENTIA $RAWING ON ANTHROPOLOGICAL AND )NDIGENOUS EPISTEMOLOGIES WE EXAMINE THE EXPERIENCES OF )NDIGENOUS FAMILY CAREGIVERS IN DIVERSECOMMUNITYCONTEXTSATATIMEWHENDEMENTIAISEMERG ING AS A MORE SIGNIlCANT DIAGNOSIS /UR THEORETICAL GROUNDINGS IN CRITICAL INTERPRETIVE ANTHROPOLOGY POSTCOLONIAL THEORY AND COMMUNITY BASED PARTICIPATORY RESEARCH PROVIDE A UNIQUE VAN TAGEPOINTFROMWHICHTOCONSIDERTHECONTINUEDROLECOLONIALISM HAS ON THE LIVES OF )NDIGENOUS PEOPLES IN #ANADA AND HOW THIS RELATIONSHIP WITH THE #ANADIAN GOVERNMENT INlLTRATES THE DAY TO DAYEXPERIENCESOFFAMILYCAREGIVERSTOPEOPLEWITHDEMENTIA )NTHISARTICLE WEAIMTOEXPLORECOMMONCAREGIVINGEXPERIENCES ANDPATTERNSACROSSDIVERSECOMMUNITIESWITHTHEPURPOSEOFGAIN INGINSIGHTINTO)NDIGENOUSMODELSOFCARETOBETTERUNDERSTAND HOW TO APPROPRIATELY SUPPORT FAMILIES DEALING WITH A DEMENTIA DIAGNOSIS

BACKGROUND 2ESEARCHON)NDIGENOUSDEMENTIABELIEFSHASFOUNDTHATMEMORY LOSS AND CONFUSION ASSOCIATED WITH AGE IS NOT CONSIDERED PATHO LOGICALANDISGENERALLYFELTTOBENORMAL NATURAL ACCEPTED AND LOCATED WITHIN PARTICULAR CULTURAL FRAMEWORKS #AMMER  (ENDERSON  (ENDERSON  (ULKO ET AL  *ACKLIN  7ARRY  ,ANTING #ROSSLEY -ORGAN  #AMMER   (OWEVER RECENT STUDIES ALSO SUGGEST THAT BECAUSE DEMENTIA HAS BECOMEMORECOMMON )NDIGENOUSPEOPLESARENEGOTIATINGNEW EXPLANATORY ILLNESS MODELS THAT BLEND TRADITIONAL CULTURAL UNDER STANDINGS WITH WESTERN BIOMEDICAL PERSPECTIVES AND SOMETIMES LINKTHERISEINDEMENTIATO7ESTERNIZATION(ULKOETAL  ,ANTINGETAL   #AREGIVING PRACTICES ARE HEAVILY INmUENCED BY CULTURE $ILWORTH !NDERSON  'IBSON  (INTON  INCLUDING TRADITIONAL BELIEFS AND HISTORICAL EXPERIENCES *ERVIS  -ANSON   #ULTURAL INTERPRETATIONS OF A PARTICULAR ILLNESS CAN IMPACT THE AMOUNT AND TYPE OF CARE THAT ARE PROVIDED WHO BECOMES RESPONSIBLEFORCAREGENDERROLES COPINGANDSELF CARESTRATEGIES AND THE USE OF SOCIAL SUPPORTS $ILWORTH !NDERSON  'IBSON  (INTON   !S WE UNDERSTAND MORE ABOUT DEMENTIA CAREPRACTICESAMONG)NDIGENOUSPEOPLES WElNDMOSTFREQUENTLY THE FAMILY IS PRIMARY OR SOLE PROVIDER OF CARE "UCHIGNANI  !RMSTRONG %STHER  #AMMER  #HAPLESKI 3OBECK  &ISHER  (ENDERSON  (ENNESSY  *OHN   *ERVIS-ANSON *OHN (ENNESSEY 2OY 3ALVINI  0ACE  4HIS STEMS FROM NECESSITY IN SOME CASES BUT MORE OFTENBECAUSEOFACULTURALEMPHASISONFAMILIALINTERDEPENDENCE

(ENNESSY  *OHN  AND THE CULTURAL VALUE PLACED ON RECIPROCITY*ERVIS "OLAND &ICKENSCHER   0UEBLO STUDIES HAVE FOUND THAT CAREGIVING IS MOST OFTEN PRO VIDEDBYFEMALES4HESESTUDIESHAVEFOUNDTHATCAREGIVERBURDEN IN THESE COMMUNITIES IS EXCEPTIONALLY HIGH BUT THAT THE CAREGIV ERSRARELYEXPRESSANYNEGATIVEEMOTIONS4HE0UEBLOSTRATEGYFOR COPINGWASSIMILARTOOTHERTRIBES WHICHEMPHASIZEDACCEPTANCE AND ADAPTATION RATHER THAN CONTROL (ENNESSY  *OHN  *ERVIS-ANSON  ANDRELIANCEONCULTURALRESOURCESTOCOPE EG BELIEFS EXTENDEDFAMILY TRADITIONAL ANDRELIGIOUSPRACTICES *ERVIS  -ANSON   #ULTURAL ATTITUDES OF RECIPROCITY WERE FOUNDTOBERELATEDTOLOWLEVELSOFCAREERSTRESSANDSTRAIN"OTSFORD #LARKE 'IBB *ERVISETAL  AND)NDIGENOUSCAREGIV ERSFELTREWARDEDINTHEIRROLEBECAUSEOFTHEDEVELOPMENTOFSTRONG RELATIONSHIPSWITHELDERS*ERVISETAL   !LTHOUGH FAMILY CARE IN THE HOME IS IN MOST INSTANCES THE PREFERRED OPTION FOR A PERSON WITH DEMENTIA PRESSURES SUCH AS CHANGING FAMILY STRUCTURES URBAN MIGRATION AND THE ONGOING EFFECTS OF COLONIALISM ARE IMPACTING )NDIGENOUS FAMILIES ABILITY TO PROVIDE CARE #HAPLESKI ET AL  (ABJAN 0RINCE  +EL LEY ,ANTINGETAL  ,ANTINGETAL FOUNDTHAT )NDIGENOUS GRANDMOTHERS CHARACTERIZED THIS AS THE hBIG CHANGE IN CULTUREv AS THEY DISCUSSED CHANGES TO FAMILY STRUCTURES AND A DECREASE IN COMMUNITY HELPING /VER THE LAST CENTURY POLICIES ENACTED BY THE #ANADIAN GOVERNMENT HAVE ASSAULTED )NDIGENOUS LIFEWAYSANDBELIEFSYSTEMS4HEMOSTOFTENCITEDOFTHESEPOLICIES INCLUDEDTHEINTRODUCTIONOFNEWECONOMIESANDRELIGION RELOCA TIONOFSETTLEMENTSTORESERVES THECRIMINALIZATIONOF)NDIGENOUS CEREMONIESANDHEALINGMETHODS THEREMOVALOF)NDIGENOUSCHIL DRENFROMTHEIRHOMESANDCOMMUNITIES ANDCHRONICUNDERSER VICINGOFTHEPOPULATION*ACKLIN7ARRY  !LTHOUGHMOST POLICIES HAVE BEEN TERMINATED THE IMPACTS ARE LONG LASTING4HE COLONIALASSIMILATIONPOLICESMENTIONEDHAVERESULTEDINANOTABLE PREVALENCEOFPOSTTRAUMATICSTRESSDISORDER043$ IN)NDIGENOUS POPULATIONSRELATEDTOEXPERIENCESOFHISTORICALTRAUMA$URAN $URAN  ESPECIALLYRELATEDTOENFORCEMENTOFATTENDANCEAT RESIDENTIALSCHOOLS"RAVE(EART "RAVE(EART$E"RUYN  2ESIDENTIALSCHOOLPOLICIESENFORCEDTHEREMOVALOF)NDIG ENOUS CHILDREN SOME AS YOUNG AS  AND  YEARS OLD FROM THEIR COMMUNITIES AND AWAY FROM THEIR FAMILIES TO UNDERGO RELIGIOUS AND AGRICULTURALLY ORIENTED EDUCATION TO FACILITATE ASSIMILATION 3T 'ERMAIN  $YCK  4HE SCHOOLS HAVE BECOME NOTORI OUSFORTHEENDEMICPHYSICAL SEXUAL ANDPSYCHOLOGICALABUSESSUF FEREDBYTHECHILDREN ANDTHESEFACTSALONGWITHTHELASTINGEFFECTS HAVE BEEN PUBLICALLY ACKNOWLEDGED IN #ANADA 'OVERNMENT OF #ANADA 0RIME-INISTERS/FlCE  4HECOHORTSOFCHILDREN WHO ATTENDED RESIDENTIAL SCHOOLS ARE TODAY BOTH THE OLDER ADULTS WHOAREOFTENINNEEDOFCAREANDTHEADULTCAREGIVERPOPULATION 4HEINTERGENERATIONALEFFECTOFTHETRAUMAMEANSTHATEVERYMEM BEROFTHEHOUSEHOLDANDOFTENCOMMUNITYHASINSOMEWAYBEEN TOUCHED BY THESE EXPERIENCES4HE RESULTING MENTAL HEALTH PROB LEMS AND CULTURAL AND FAMILIAL DISLOCATION STEMMING FROM THESE

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Jacklin et al.

The cohorts of children who attended these schools are today both the older adults who are often in need of care and the adult caregiver population. policies along with the lack of a healing process for many families are acknowledged to sometimes interfere with families’ abilities to safely care for seniors in the home (Sutherland, 2007). The colonial relationship with the Canadian government continues to this day as legislated by the Indian Act. The Indian Act gives legal authority to the Federal Government of Canada to create and enact policies concerning registered Indian and Inuit peoples in Canada including allocation of funding and services to reserve communities. Section 73 of the Indian Act provides authority to the federal government to deliver health services to these populations (see Jacklin & Warry, 2004, 2011). The Indian Act does not apply to Indigenous people in Canada who are not “registered” with a reserve community or those who have Métis status.3 Although ordinary citizens of Canada receive health care services from the provincial government in which they reside, the “registered Indian” and Inuit populations receive health services from the province or territory in which they reside and the federal government creating a multijurisdictional care model resulting in service gaps and gross inequities (Jacklin & Warry, 2011). With this in mind, we understand care for older Indigenous people as occurring within a complex set of Indigenous determinants of health that uniquely include the intergenerational impacts of colonialism and an on-going colonial relationship with the Canadian government that creates inequitable access to resources and poorer health outcomes(Loppie Reading & Wein, 2009). In First Nations communities, the number of individuals aged 55–64 years reporting three or more chronic conditions is 3.5 times higher than nonFirst Nations people (Wilson, Rosenberg, & Abonyi, 2011), and rates of dementia are reported to be 34% higher than the nonFirst Nation population and rising more quickly (Jacklin et al., 2013). Although there are complex needs for Indigenous people with dementia, there is also significant underuse of mainstream services because of poor access and institutional barriers to care (Buchignani & Armstrong-Esther, 1999) including deeply embedded mistrust of the health care system (Finkelstein, Forbes, & Richmond, 2012). Despite the challenges, it is still recognized that optimal care for seniors is ideally provided by the family and grounded in traditional values and beliefs (Lanting et al., 2011; Segal & Smith,

2004). The results of our research shared in this article specifically tackle the issue of family caregiving in various Indigenous communities and begins to shape a framework for understanding and supporting informal Indigenous family caregiving.

METHODS The data presented here are drawn from an ethnographic study entitled “Alzheimer’s Disease and Dementia Among Indigenous Peoples in Ontario, Canada” (led by authors KJ and WW). This multisite anthropological study was conducted in partnership with Indigenous communities from diverse regions of the province. Collaborative research was undertaken at seven sites including urban (Ottawa, Sudbury, Thunder Bay), peri-urban (Six Nations), rural (Wikwemikong Unceded Indian Reserve, United Chiefs and Council of Mnidoo Mnissing [Manitoulin Island]), and remote (Moose Cree First Nation). See Figure 1.

Data Collection The project involved interviews with people caring for a person with dementia, seniors, key informants, and health care workers. We report here on a subset of the project data drawing on in-depth, semistructured interviews with Indigenous informal caregivers to Indigenous people with dementia. Participants were given the option to have the interview conducted in their Indigenous language by a community-based researcher. Interviews were conducted in the caregivers’ home. We followed a convenience sampling strategy. Potential participants were approached by local health care providers who provided information on the study and contact information for the researchers.

Six Research Sites in Ontario, Canada ² MANITOBA

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Sudbury (urban) Six Nations Ottawa (urban)

Figure 1.  Partner research sites, Ontario, Canada.

108 Copyright © Springer Publishing Company, LLC

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Indigenous Dementia Caregiving

Data Analysis

Participants were given the option to have the interview conducted in their Indigenous language by a community-based researcher. )NTERVIEWSLASTEDANAVERAGEOFMIN WEREDIGITALLYRECORDED TRANSCRIBEDVERBATIM ANDENTEREDINTOTHEQUALITATIVEDATAANALY SISSOFTWARE132.6IVO4HEQUALITATIVESOFTWAREPACKAGEWAS USEDTOORGANIZEANDRETRIEVEDATABUTNOTFORANALYSIS0ARTICIPANT OBSERVATIONOCCURREDATEACHOFTHERESEARCHSITESBYTHEAUTHORS ANDPROJECTSTAFFBUTWITHVARYINGDEGREESOFCONSISTENCY!LLPROJ ECTSTAFFKEPTlELDNOTESTHATWERESUBMITTEDANDCONSIDEREDIN THEANALYSIS-ORETHOROUGHETHNOGRAPHIClELDWORKWASCARRIED OUTATJUSTONEOFOURRESEARCHSITES-ANITOULIN)SLAND BY0ACE FORHERDISSERTATIONRESEARCH0ACE  

Sample 4HENUMBEROFINTERVIEWSPERRESEARCHSITEISPRESENTEDIN4ABLE 4HIRTY FOURINFORMALCAREGIVERSWEREINTERVIEWED#AREGIVERSINOUR SAMPLEWEREADULTCHILDREN SPOUSES EXTENDEDFAMILY ANDFRIENDS 4ABLEPORTRAYSRELATIONSHIPSBETWEENCAREGIVERSANDCARERECIPI ENTSINOURSAMPLE&AMILYCAREGIVERSPROVIDEDCAREFROMMONTHS TO  YEARS M ⫽  YEARS  -OST PARTICIPANTS DESCRIBED CARING FORONEINDIVIDUAL BUTSOMEMENTIONEDMULTIPLECARE GIVINGROLES

Table 1. Number of Interviews per Site 3ITE 5NITED#HIEFSAND#OUNCILOF --NIDOO-NISSING

#AREGIVERS 6

4HEPROJECTWASGUIDEDBYACRITICALINTERPRETIVEAPPROACH3CHEPER (UGHES  WHICHWASENHANCEDBYPARTICIPATORYAPPROACHES FACILITATING THE INCLUSION AND SHARING OF )NDIGENOUS KNOWLEDGE *ACKLIN+INOSHAMEG  )NTHISWAYWESEETHISRESEARCHAS INCORPORATINGANDBRIDGINGBOTHANTHROPOLOGICALAND)NDIGENOUS WAYSOFKNOWING4HECRITICALINTERPRETIVEPERSPECTIVEACKNOWLEDGES POLITICAL ECONOMIC FACTORS IN HEALTH WHILE FOCUSING ON PERSONAL EXPERIENCE AND THE CONSTRUCTION OF ILLNESS BY PATIENTS FAMILIES AND CAREGIVERS 3CHEPER (UGHES   2EMINISCENT OF +LEIN MANS EXPLANATORYMODELTHEORY ITISBASEDONTHESCIENTIlC STUDYOFEXPERIENCEKNOWNASphenomenology7EUSEDANITERATIVE ANALYSISAPPROACH4HECRITICALINTERPRETIVEFRAMEWORKANDAPOST COLONIAL LENS "ROWNE  3MYE  PROVIDED THE SKELETON FOR THEINITIALANALYTICFRAMEWORK0OSTCOLONIALTHEORETICALAPPROACHES PROVIDEAMOREINTENSEFOCUSSPECIlCALLYONTHEON GOINGEFFECTSOF COLONIALRELATIONSHIPSASKEYCONTRIBUTORSTOTHEHISTORICAL SOCIAL POLITICAL ANDECONOMICINEQUALITIESPRESENTTODAYTHATIMPACTTHE HEALTHANDWELL BEINGOF)NDIGENOUSPEOPLESIN#ANADA"ROWNE  3MYE  4O BUILD ON THE THEORETICAL DOMAINS EMERGENT SUBTHEMESWEREIDENTIlEDDURINGEARLYCOMMUNITYCONSULTATIONS AND BASED ON OBSERVATIONS AS WELL AS ON GOING DEBRIElNG SES SIONSWITHCOMMUNITY BASEDRESEARCHERSANDTHEIRSUBMITTEDlELD NOTES4HESE ANALYTIC CATEGORIES WERE SUBSEQUENTLY BUILT INTO THE CODING STRUCTURE AND ANALYSIS SO COMMUNITY BASED PERSPECTIVES WERE REmECTED IN CONJUNCTION WITH OUR THEORETICAL FOUNDATIONS &OLLOWINGTHECODINGOFTHETRANSCRIPTS ANOTHERDEBRIElNGSESSION WASHELDWITHTHERESEARCHASSISTANTS2!S TOIDENTIFYANDCLARIFY ANY FURTHER THEMES !S A lNAL STEP WHEN ANALYZING THE CAREGIVER EXPERIENCES WEUSEDTHETHEMATICAREASIDENTIlEDTOSTRUCTURETHE FRAMINGOFTHESHAREDEXPERIENCEOFTHEPARTICIPANTSPROVIDINGCARE TOSOMEONEWITHDEMENTIA4HISRESULTEDINTHECLUSTERINGOFSIG NIlCANT THEMES INTO HIGHER LEVEL INTEGRATIVE THEMES IN THIS CASE THREE CORRESPONDINGTOTHEIRCAREGIVINGJOURNEYS

Table 2. Care-Giving Relationships #AREGIVER

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Jacklin et al.

RESULTS /FTHECAREGIVERSWHOPARTICIPATED MOST WEREMEMBERSOF THEPERSONSWITHDEMENTIAIMMEDIATENUCLEAR FAMILY$AUGHTERS ANDWIVESREPRESENTEDOFTHOSEINTERVIEWED/NLYTWOCAREGIVERS CAMEFROMTHEEXTENDEDFAMILYUNIT!LTHOUGHIMMEDIATEFAMILY MEMBERSWEREMOSTOFTENTHEPRIMARYCAREGIVER MOSTPARTICIPANTS REPORTED BEING SUPPORTED BY OTHER FAMILY MEMBERS FRIENDS AND NEIGHBORS)NAFEWCASES THECAREGIVERPARTICIPANTREPORTEDBEING THEONLYPERSONCONTRIBUTINGTOTHECAREOFTHEIRLOVEDONE 4HE lNAL ANALYTIC PROCESS FOCUSING ON THE PERSONAL CONSTRUC TIONSPRODUCEDTHREEINTEGRATIVETHEMATICCATEGORIES WHICHPROVIDE OPPORTUNITIESTOEXPLORETHEEXPERIENCES4HERESULTSAREORGANIZED AROUND THESE THREE THEMES A )NDIGENOUS VALUES B CAREGIVING CHALLENGES ANDC POSITIVEREmECTIONS!TTIMES ITBECOMESDIFl CULTTODRAWLINESTHROUGHTHEOVERALLCAREGIVINGEXPERIENCE FORTHIS REASON THERESULTSAREPRESENTEDASACAREGIVINGSTORYLINEBEGINNING WITHWHYANDHOWPARTICIPANTSCAMETOTHECAREGIVINGROLECHAL LENGES STRUGGLES ANDDECISIONSALONGTHEWAYANDREmECTIONSON THEREWARDSANDBENElTSOFCARINGFORALOVEDONEWITHDEMENTIA )NOURPRESENTATIONOFTHERESULTS WEUSECAREGIVERSDIRECTWORDSAS MUCHASPOSSIBLETOHIGHLIGHTTHEMOSTCOMMONEXPERIENCESWHILE ALSOTENDINGTODIVERGENTIDEAS VALUES ANDEXPERIENCES4HEQUOTES WEHAVESELECTEDTOINCLUDEARETHOSETHATBESTEXPRESSEDCOMMONLY HELDSENTIMENTS%ACHPARTICIPANTHASBEENGIVENAUNIQUEIDENTI lERWHICHISINDICATEDATTHEENDOFTHEQUOTEFOLLOWINGTHECOM MUNITYLOCATION)NTHISSECTION WEHAVEINTENTIONALLYLIMITEDOUR OWNVOICESTOPROVIDINGADDITIONALINFORMATIONCOMINGFROMTHE INTERVIEWSANDOBSERVATIONSTOPROVIDESOMECONTEXT BUTWEREFRAIN FROMINTERRUPTINGTHESTORYLINEWITHOURINTERPRETATIONS WHICHWE HAVERESERVEDFORTHEh$ISCUSSIONvSECTIONOFTHEARTICLE7ENOTE THATTHEPARTICIPANTSQUOTESREmECTDIFFERINGLANGUAGEWHENREFERRING TO THEMSELVES OR THEIR CULTURE INCLUDING !BORIGINAL !NISHINAABE #REE .ATIVE ANDSOFORTH/URCOMMENTARY HOWEVER MAINTAINS CONSISTENCYINUSINGTHEINCLUSIVELANGUAGEOF)NDIGENOUS

Indigenous Values: Keeping People at Home “As Long As We Can” -OSTCAREGIVERSWESPOKETOEXPRESSANUNDERLYINGDESIRETOCAREFOR THEIRFAMILYMEMBERINTHECOMMUNITYINEITHERTHECAREGIVERSOR THECARERECIPIENTSHOMEFORASLONGASPOSSIBLE0ARTICIPANTSSHARED MANY MOTIVATIONS FOR WANTING TO KEEP THEIR LOVED ONE AT HOME BUTMOSTFREQUENTLY THEEXPLANATIONSWERESIMPLYSTATEDhBECAUSE OF TRADITION v hBECAUSE ) LOVE HIM v AND hBECAUSE SHE TOOK CARE OF MEv4HE WORDS CAPTURED IN THE FOLLOWING QUOTES COME FROM DIVERSECOMMUNITIESBUTREmECTCOMMONMOTIVATIONS 4HATTHECULTURALIDEA THECULTURALPIECEFORMEISTHATACCEPTING THEROLETHATWECAREFOR YOUKNOW OURELDERS FORMETHATSJUSTA GIVEN3UDBURY !+#' !H )THINKWHATMADEITEASIERORMORENATURALISTHATBEING !BORIGINALTHATSONEOFTHETRAITSISFAMILYCARE!NDITBECAMEAN

AUTOMATICSORTOFTHINGTOOEVENTHOUGHWEMADEHAVEHAD;TO= lGHTSOTHATTRADITIONALFEELINGWASSTILLTHEREASBEINGFAMILYANDSO THAT THATMADEITEASIER3IX.ATIONS 4-#' -Y MOM TOOK CARE OF MY KIDS WHILE ) WAS GOING TO COLLEGE 3HESUPPORTEDME)FELTTHATITWASMY;TURN=TOTAKECAREOFMY PARENTSWHENMYDADTOOKILL UM SO)TOOKCAREOFBOTHOFTHEM 7IKWEMIKONG +0#'

4HESEEXPLANATIONSARECONSISTENTWITH)NDIGENOUSCULTURALVAL UESOFLOVE RELATIONSHIP ANDRECIPROCITYINTHISREGION7EHEARD ONLYINFREQUENTLYFROMPARTICIPANTSTHATTHEYPROVIDEDCAREOUTOF ASENSEOFhDUTYvORBECAUSETHEREWASNOOTHERCHOICE!COUPLEOF PARTICIPANTSPROVIDEDCAREFORAPARENTFROMWHOMTHEYHADEITHER BECOMEESTRANGEDORHADBEENREMOVEDFROMATAYOUNGAGEAND CAME TO THE CAREGIVING RELATIONSHIP MORE RELUCTANTLY OR THROUGH FEELINGSOFGUILTOROBLIGATION SOMETIMESACCOMPANIEDBYFEELINGS OFANIMOSITY7EFOLLOWTHISDAUGHTERSSTORY!+#' THROUGH THE RESULTS AND LATER WE WILL SEE HOW THE CAREGIVING RELATIONSHIP TURNSINTOAPOSITIVENARRATIVEAROUNDHEALING 3HESMYBIOLOGICALMOTHER BUTSHENEVERRAISEDME ANDTHENURSE ONTHERESERVECONTACTEDMETOTELLMESHECOULDNOLONGERLIVEON HEROWNAND AH THEREWERENOPLACEMENTOPTIONSFORHERATTHE TIME SO)WASTHEONLYONEINTHEFAMILYWHOWASPREPAREDTOHAVE HERCOMEANDLIVEWITHUS3UDBURY !+#'

)NTHEFOLLOWINGEXCERPT THECAREGIVERDESCRIBESWHATSHEFEELS TOBETHERESPONSIBILITYOFTHEFAMILYOFTHEPERSONWITHDEMENTIA WHICH IS TO BECOME KNOWLEDGEABLE AND CARE FOR THEM AT HOME DESPITETHEDIFlCULTIES &IND OUT MORE ABOUT IT AND TO FOLLOW UP ON IT WHAT !LZHEIMERS ANDDEMENTIAISBECAUSEITSSOIMPORTANTINAFAMILYESPECIALLYLIKE THECHILDRENTHATTHEYlNDOUTIFTHEIRGRANDMOTHERHASITORTHEIR MOMSOMEBODYTHEREHASTOCAREFORTHATPERSONTHATSPARTOFTHE FAMILYYOUDONTJUSTSHIPTHEMOFFTOMETHATS JUSTLIKEDIGGING THEIRGRAVEFORTHEMANDSAYTHATSITTHATSALLANDSOMEPEOPLEDO THATANDITS AH TOMETHATSNOTTHEWAYTHAT)WOULDDOIT )WOULD TREATTHEMLIKEAFAMILYMEMBERKEEPTHEMATHOMEANDTHATSA HARDTHINGTODO3UDBURY !+#'

%MBEDDEDINTHEEARLIERPASSAGEISHERJUDGMENTTHAThSHIPPING SOMEONEOFFvWILLBEDETRIMENTALTOTHEIRILLNESSPROGRESSION/VER WHELMINGLY PARTICIPANTSATMOSTRESEARCHSITESEXPRESSEDADEEPAVER SIONTOTHEUSEOFRESIDENTIALCAREFACILITIESNURSINGHOMES SOMETIMES RELATINGTHISIDEADIRECTLYBACKTOCULTURALVALUESAROUNDFAMILIES )MGOINGTOBEHERENOMATTERWHAT.OMATTERHOWHARDITISFOR ME )MNOTGOINGTOˆAND)TOLDMY$ADTHATTOO )SAID WORSE COMESTOWORSEAND)ACTUALLYHAVETO YOUKNOW TOMOVEINHERE WITHMYFAMILYTHATSSOMETHINGTHATWEREWILLINGTODOBECAUSE) WOULDNEVERSENDMY-OMTOAHOME9OUKNOW NOMATTERHOW BADITGETS YOUKNOW-ANITOULIN)SLAND *0#'

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Indigenous Dementia Caregiving

!NOTHERPARTICIPANTCLEARLYDISTINGUISHESBEINGFAMILY ORIENTED AS A PART OF HER IDENTITY WHICH SHE SEES AS BEING IN CONTRAST TO OTHERSWHODONOTSHARETHISVALUE !SLONGAS)CAN )WOULDRATHERHAVEHERINHERHOUSEWHERESHES HAPPY WHERES SHE COMFORTABLE4HIS IS HER HOUSE !S LONG ASITS POSSIBLEFORUSTOTAKECAREOFHERHERE WEWILL ANDITWOULDHAVE TO BE LIKE EXTREMELY DIFlCULT FOR US TO MAKE THE DECISION4HERE HAVETOEXTREMEBEHAVIORSINORDERFORUSTOMAKETHEDECISIONTO PUTHERINTOCARE9OUKNOWTHELASTTHINGTHATWEWANTTODO ISSENDTHEMTOANURSINGHOME WHEREASTHATSEEMSTOBETHElRST AVENUEFORPEOPLETHATARENT ARENTFAMILYORIENTED3IX.ATIONS 4-#'

)NSOMECASES CAREGIVERSEXPRESSEDTHAT INADDITIONTOBEINGTHE MOSTAPPROPRIATEPLACETOPROVIDECARE THEHOMEENVIRONMENTAND COMMUNITYENVIRONMENTMAYHAVEOTHERTHERAPEUTICADVANTAGES )KNOWITSTHEBESTPLACEATHOMEWHENSOME;ONEHAS=!LZHEIMERS BECAUSEITS THEMEMORYTRIGGERSAREALL AREALLTHEREBUT;IF =THEYRE IN THE HOSPITAL THEYRE GOING TO LOSE THEM AND THEY COME BACK TO THAT HOME AND ITS THE MEMORY TRIGGERS DONT WORK ANYMORE -OOSE#REE *2#'

!NOTHERPARTICIPANTTALKEDABOUTTHEADVANTAGESOFHAVINGTHE PERSONWITHDEMENTIAINTHEIRHOMECOMMUNITY WHERETHEFAMILIES WEREKNOWNANDTHECOMMUNITYWOULDHELPWATCHOUTFORTHEM IF)MOVEDTO-ANITOWANING NOBODYKNOWSHERANDNOBODY KNOWSWHOSHEIS SHEWOULDJUSTBEAWANDERING!NISHINABEKWE ;)NDIGENOUS WOMAN= LADY WANDERING AROUND IN -ANITOWANING "UTWHENSHEWENTTO2ABBIT)SLANDWHENSHEWASWAYOUTOVER THERE THEYKNEWWHOSHEWAS ANDTHEYBROUGHTHERRIGHTBACKTO WHERE)WASTHEYKNEWWHERE)WORKED7IKWEMIKONG +0#'

&ORMOSTRESPONDENTS DEMENTIAWASNOTTHEPRIMARYDIAGNO SIS AND MANY OF THE PARTICIPANTS HAD ALREADY ANTICIPATED CARING FOR THEIR PARENT AS THEY AGED (OME RENOVATIONS OR BUILDING TO ACCOMMODATEAGINGPARENTSWASDISCUSSEDBYRESPONDENTSINURBAN COMMUNITIESANDIN-OOSE#REE WHEREPARTSOFTHECOMMUNITY

We heard only infrequently from participants that they provided care out of a sense of “duty” or because there was no other choice.

FALLOUTSIDEOFTHERESERVEBOUNDARIESANDTHEREFORETHOSEWITHTHE ECONOMICMEANSCANBUILDANDOWNTHEIROWNHOMES )BUILTTHEHOUSEAND)BUILTANAPARTMENT;INIT=FORTHEM) DIDNTWANTTHEMTOBEONTHEIROWN EVENTHOUGHTHEYWERE THEY WERESTILLCAPABLEBACKTHENTODOSTUFFONTHEIROWNBUT)DIDNOT WANTTHEMTOBEALONE-OOSE#REE *2#' )VEALWAYSKNOWN LIKE)BOUGHTTHISHOUSEWITHTHEINTENTION OFMYPARENTSEVENTUALLYCOMINGTOLIVEWITHME4HATS WHYITS DESIGNEDTHISWAY%VERYTHINGSONTHEMAINmOOR )HAVEMYPRIVACY UPSTAIRS4HEKITCHENSRIGHTTHEREBUTBACKWHEN)BOUGHTTHE HOUSE)DIDNTREALIZETHATSHEWASGONNABEDIAGNOSEDWITHDEMEN TIA)THOUGHTSHEDBEABLETOHELPWITHTHECOOKINGBUTNOWSHES NOTALLOWEDTOCOOKEITHER/TTAWA *+#'

3OME PARTICIPANTS EVENTUALLY DID PLACE THEIR LOVED ONE IN A RESIDENTIALCAREFACILITY BUTMOSTDIDNOT ANDONEWHODIDLATER WITHDREW THEIR MOTHER AFTER A SHORT PERIOD 0LACEMENT IN A CARE FACILITYWASMORECOMMON WHEREAFACILITYWASAVAILABLEINORCLOSE TOTHECOMMUNITY)NURBANSITES CAREFACILITIESWEREMOREEASILY ACCESSEDBUTWERESTILLNOTCOMMONLYUSEDSOMETIMESBECAUSEOF ADEEPRELUCTANCETOUSEMAINSTREAMSERVICESASWELLASTHENORM OF FAMILY CAREGIVING 3IX .ATIONS HAS A "AND OPERATED RESIDEN TIALCAREFACILITY BUTTHOSEINADVANCESTAGESOFDEMENTIAARENOT ADMITTED -ANITOULIN )SLAND IS HOME TO THREE PROVINCIALLY OPER ATED RESIDENTIAL CARE FACILITIES ONE IS LOCATED IN 7IKWEMIKONG BUTSECURINGAPLACEINAFACILITYCLOSETOONESHOMECOMMUNITY CANBECHALLENGING-ANITOULIN)SLANDISKM -OOSE#REE &IRST.ATIONDOESNOTHAVEACAREFACILITYANDHAVELIMITEDHOSPITAL BEDS DESIGNATED TO ALTERNATIVE LEVEL CARE 0ARTICIPANTS AT THIS SITE RESPONDEDTHATTHEYWOULDWELCOMEARESIDENTIALCAREFACILITYAND WOULD PLACE THEIR LOVED ONE IN SUCH A FACILITY IF IT WERE hCULTUR ALLYAPPROPRIATEvANDCLOSEBYSOTHEYCOULDVISITOFTEN4HISISA SMALLCONlNEDCOMMUNITYWHEREEVERYTHINGISWITHINWALKINGDIS TANCE)TISLOCATEDONANISLANDONTHE*AMES"AY#OASTIN.ORTH ERN/NTARIOˆFEWSERVICESAREAVAILABLE ANDTHECLOSESTRESIDENTIAL CAREHOMEISACCESSIBLEBYAIRORWINTERROADONLYATADISTANCEOF KMANDOFGREATEXPENSE )WOULDCONSIDERMOVINGHERTOAHOMEIFTHEREWASONEHERE YEAH WHERETHAT)COULDREGULARLYSEEHER YEAHANDTHAT) IF)KNEW THEREWASSOMETHINGHERETHATWASREALLYCULTURALLYRELEVANT,IKE THEONETHINGTHATMAKESMYMOMREALLYHAPPYISEATINGWILDFOOD -OOSE#REE *2#'

#AREGIVERSWHOWEREASSISTINGAPERSONWITHEARLY STAGEDEMEN TIAEXPRESSEDLESSSTRESSANDFEWERCONCERNSABOUTTHEIRABILITYTO MANAGECAREGIVINGDUTIES!SSYMPTOMSWORSENEDANDTHEPERSON WITH DEMENTIAS ABILITIES DECLINED CAREGIVERS DESCRIBED GREATER CHALLENGESANDAHIGHERLEVELOFSTRAIN(YGIENEANDMEDICALCARE NEEDSWEREESPECIALLYDIFlCULTTOCOPEWITH9ET THEPARTICIPANTS

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Jacklin et al.

For most respondents, dementia was not the primary diagnosis, and many of the participants had already anticipated caring for their parent as they aged. CONTINUEDTOCAREFORTHEMATHOME USUALLYWITHSOMEHOMECARE ASSISTANCE 3OMECAREGIVERSRECOGNIZEDTHATASTHEILLNESSPROGRESSED THEY MAYNOTBEEMOTIONALLYORPHYSICALLYCAPABLEOFMAINTAININGOPTI MALCARE9ET MANYPARTICIPANTSALSOFELTSTRONGLYTHATTHEYWOULD CONTINUEASLONGASPOSSIBLEANDSOMESTEADFASTLYDENIEDTHEYWILL CONSIDERRESIDENTIALCAREEVENINEXTREMECIRCUMSTANCES )SEENTHISREALLYDRASTICCHANGEWASWHENSHEGOTBEDRIDDENBUTHE ;FATHER=KEPTHERATHOME4HATWASSOIMPORTANTFORMETOSEETHAT TOKEEPHERATHOMEINSTEADOFPUTTINGHERINANURSINGHOMENO HEKEPTHERATHOME;AND=HADTHENURSESCOMEINGIVEHERABATHIF SHE THEYWOULDHAVETOGETHERUPTOSITUPANDEAT WELLSHEWOULD EAT YOU KNOW THEY HAD TO SPOON FEED HER BUT ) DID THAT TOO4O SEETHATDRASTICCHANGEINTHATSHORTOFATIMEITWASSO UM TOSEE THATBEAUTIFULWOMANTOALLOFSUDDENDETERIORATIONALLOFASUDDEN JUSTLIKETHAT !LZHEIMERS ITSNOTAVERY AH PLEASANTTOWATCHOR DEMENTIA3UDBURY !+#'

!LTHOUGHPEOPLEHADLITTLEFORMALKNOWLEDGEABOUTTHEDISEASE MANYDIDUNDERSTANDTHATTHECAREWASGOINGTOBECOMEMOREDIF lCULTASTHEDISEASEPROGRESSED4HESTRUGGLEAROUNDHOWTOCOPE INTHELATERSTAGESANDTHETENSIONAROUNDNURSINGHOMEADMISSION WASALARGECONCERNFORTHECAREGIVERSWEINTERVIEWED 4HEYWILLGETWORSE )KNOWTHEYLLGETWORSE@#AUSE)VESEENMY GRANDMOTHER)KNOWEXACTLYWHATTOEXPECT3HESNOTGONNA RECOGNIZEMEAFTERTIME9OULLHAVETOFEEDHER SHELLFORGETHOW TOˆSHELL FORGET HOW TO FEED HERSELF AND UH IF SHE LASTS LONG ENOUGH SHELLFORGETEVENHOWTOSWALLOW4HATSNEARTHEEND!ND UM SHELL SHELL SHELL YOULLALSOHEARLIKE THESAMESTORIESOVER ANDOVERAGAIN9EAH YOUREGONNAHEAR YOUREGONNAHEARTHESAME STORIES OVER AND OVER AGAIN AND YOURE GONNAˆTHE BATHROOM IS GONNABEREALLYTERRIBLE7ELL )DONTKNOW )LLHAVETOlGUREITOUT SEEHOW/TTAWA *+#' .O )DONTFEELTHAT)KNOWENOUGHABOUTDEMENTIAANDHOW ITESCALATESINMORESERIOUSDEMENTIAANDTHECARETHATSHESGONNA NEEDYEAH WHATSGONNAHAPPENNEXT7HATSGONNAHAPPEN NEXTISTHATEVENTUALLYSHESGONNABETOOHARDTOTAKECAREOFWHERE WEREGONNAHAVENOCHOICEBUTTOPUTHERINAHOMEANDWERENOT

ATTHEWEHADTOMAKEADECISIONFORHERIN!UGUST UM ABOUTIF SHE NOBODYLOOKSAFTERHERHOURSADAY SHEWILLBEINANURSING HOMESOWEDIDNTWANTTHATFORMOMSOWEJUSTSAIDNO SHESNOTBADENOUGHYETTOGOINTOTHENURSINGHOME WELLLOOK AFTER HER AND IF IT COMES TO THAT POINT THEN WELL DEAL WITH THAT /TTAWA *+#'

7E ASKED PARTICIPANTS PROVIDING CARE TO A LOVED ONE WITH DEMENTIAINOURSTUDYUNDERWHATCIRCUMSTANCESTHEYWOULDCON SIDERFORMALRESIDENTIALCARE!LTHOUGHSOMESUGGESTEDTHEYWOULD NEVER CONSIDER THIS OTHERS WHEN PROMPTED BY THE INTERVIEWER EXPRESSEDTHEYWOULDPERHAPSUSEANURSINGHOMEIFTHEYWERENO LONGERABLETOMEETTHECARENEEDS FOREXAMPLE hIFHEISTOOHELP LESSvORh)F)GOTSICKv -OSTOFTEN PARTICIPANTSANDFAMILIESDREWONTHEIRSPIRITUALITY ASACOPINGMECHANISM4HECAREGIVERSINTHESTUDYDREWONEITHER TRADITIONAL)NDIGENOUSTEACHINGSANDCEREMONYOR#HRISTIAN BASED FAITHTOCOPEANDlNDSTRENGTH-ANYSIMPLYSTATEDTHATTHEYPRAY FORPATIENCEORGUIDANCE )WOULDSAYFAMILYISOURSUPPORTREALLYORYOUCANUSETHEMEDI CINESSAGEYOUCANTAKETHATANDASKFORHELPGUIDANCEWITHYOUR MEDICINES PRAYER UM ANDJUSTSUPPORTFROMTHEFAMILYRIGHTNOW /TTAWA *+#' )THINKALOTOFTHATHASTODOWITHOURSPIRITUALITY YOUKNOW ,IKEEVERYDAY FORMEANYWAYS )PUTMYTOBACCODOWNANDASKFOR GUIDANCEFORTHATDAYTOBESTRONG-ANITOULIN *0#' !NDAH YEAH)BELIEVETHAT ONEOTHERTHINGTOTHAT)HADPRAYED ABOUT IN FACT WAS THAT ) WOULD BECOME A MORE COMPASSIONATE PERSONBECAUSE)FELT)WASHARSH LIKE)COULDJUSTFEELTHATHARDNESS ANDSO)HADPRAYEDTHATTHE,ORDWOULDHELPMETOBECOMEMORE COMPASSIONATEANDTHROUGHTHISHEHAS)TSBEENALONGHAUL HAUL YOUKNOW)TSBEENHARD"UTPATIENCECOMESTHROUGHHARDTHINGS AND)BELIEVEHESGIVENMETHATMORECOMPASSIONTHAN)HADBEFORE 3IX.ATIONS 4-#'

Challenges -OST PARTICIPANTS NOTED THEIR LACK OF KNOWLEDGE OF DEMENTIA ITSSYMPTOMS ANDPROGRESSION,ACKOFAWARENESSABOUTTHEDIS EASEOFTENDELAYEDCAREGIVERSEFFORTSTOSEEKADIAGNOSISORSUP PORTIVECARESERVICES0ARTICIPANTSEXPRESSEDANXIETYABOUTHOW DEMENTIAMIGHTPROGRESS CONCERNABOUTHOWTOPREVENTIT AND A POOR UNDERSTANDING OF HOW TO BEST SUPPORT THE PERSON WITH DEMENTIA ,IKE ONTHEVERYONSET WEDIDNTKNOWTHATITWAS!LZHEIMERSOR DEMENTIA7EHADNEVERHEARDABOUTTHATBEFORE"UT;ITWAS=ONLY AS THE DISEASE PROGRESSED THAT WE REALIZED THAT YOU KNOW SOME THINGDElNITELYWASWRONGANDTHEREWASANAMETOTHAT@#AUSE UM NOT HAVING EXPERIENCED ANY OF THAT IN OUR FAMILY OR IN THE PAST7ELL WEDIDNTREALLYKNOWANYTHINGABOUTIT3IX.ATIONS 4-#'

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Indigenous Dementia Caregiving

!LTHOUGH SOME PARTICIPANTS OBTAINED INFORMATION FROM THE )NTERNETORWORKSHOPS FEWCAREGIVERSHADKNOWLEDGEORTRAINING ABOUTCARINGFORAPERSONWITHDEMENTIAORKNEWWHERETHEYMIGHT LOCATEINFORMATIONABOUTSUPPORTANDSERVICES/NEWOMAN WHO HADCAREDFORBOTHOFHERPARENTSFORYEARS FELTHERKNOWLEDGE OFANDACCESSTOCARESERVICESWASSTILLVERYLIMITED !TTIMES )SITBYMYSELFANDTHINKYOUKNOWWHATSINSTORE9OU KNOW HOWBADISITGONNAGET WHATAREGOINGTOBETHESYMPTOMS TOLOOKFOR(OWAM)GOINGTOHANDLEIT@CAUSE)MLIVINGHEREBY MYSELFWITHHIMAND;PAUSE=)MEAN THEDOCTORDIDTELLUSWHENHE WASlRSTDIAGNOSEDTHATITWILLPROBABLYPROGRESSFASTCAUSEHEGOTIT ATSUCHAYOUNGAGE7IKWEMIKONG +0#'

-ANY OF THE PARTICIPANTS WERE ACCESSING SOME HOME CARE SER VICES PERSONAL SUPPORT AND NURSING FOR CONCURRENT DIAGNOSES MOSTOFTENRELATEDTOCOMPLICATIONSOFDIABETES!TALLSITES MANY STRESSEDTHELACKOFCULTURALLYAPPROPRIATESERVICESANDSERVICESIN THEIR)NDIGENOUSLANGUAGE-ANYOFTHEOLDERADULTSWITHDEMENTIA SPOKE AN )NDIGENOUS LANGUAGE AS THEIR lRST LANGUAGE AND EXPERI ENCED GREAT DIFlCULTY COMMUNICATING IN THE HEALTH CARE SETTING PARTICULARLYWITHPHYSICIANS0ERSONALSUPPORTWORKERSWEREOFTEN ALSO )NDIGENOUS AND FROM THE SAME COMMUNITY AND CAREGIVERS COMMENTED THAT VISITS FROM THESE WORKERS ESPECIALLY WHEN THEY SPOKETHEIRLANGUAGE GREATLYIMPROVEDTHEIRLOVEDONESSPIRIT4HE AVAILABILITYOFSUPPORTIVESERVICESWASINEQUITABLEACROSSTHESITES 5RBANANDPERI URBANSITESHADMORESUPPORTIVESERVICESAVAILABLE WHEREAS RURAL AND REMOTE COMMUNITIES HAD FEWER AND PARTICI PANTSHADTOTRAVELGREATERDISTANCESTOACCESSTHEMEDICALCARETHEY NEEDED !LLTHECAREGIVERSSHAREDSTORIESOFTHECHALLENGESTHEYFACEDCAR INGFORTHEIRLOVEDONEATHOME4HEIREXPERIENCESRANGEDFROMTHE DIFlCULTIES OF  CARE TO SLEEP DEPRIVATION TO PERSONAL CAREER ANDEDUCATIONALPLANSPUTONHOLDTOTAKEONTHEROLEOFCAREGIVER %ACHOFTHESESTORIESCOMESFROMCAREGIVERSWHOFORTHEMOSTPART HAVEREDUCEDORNOACCESSTORESPITEANDINCOMELEVELSTHATWOULD PREVENTTHEMFROMACCESSINGPRIVATESERVICES 9EAHFORMYSELFTO)SUPPOSE@CAUSE)lNDMYSELFJUSTSAYINGWELL WHATIFDADCOULDAH WHATIF WOULDNTIT )SITHEREALOTOFTIMES ANDTHINKWOULDNTITBENICEIFSOMEBODYCAME TOOKDADFORARIDE CAUSEHELIKESTOGOFORARIDE TOOKHIMFORARIDEAND)COULDGOTO SLEEP4HATSTHElRSTTHING)WOULDDOIS)WOULDJUSTLAYDOWNAND GOTOSLEEP!H WELLACTUALLY ITISNTDIFlCULTITSJUSTCOMMITTING YOURTIMEYOURSELF,IKE)GAVEUPMYFULL TIMEJOB )GAVEUPEVERY THINGSO)COULDCOMEANDLOOKAFTERHIM3IX.ATIONS 4-#'

,ACKOFACCESSTORESPITEWASTHELARGESTCONCERNRAISEDBYTHE CAREGIVERS WE INTERVIEWED !T ALL SITES THE CAREGIVERS DISCUSSED THEINTENSITYOFCAREANDSUPERVISIONREQUIREDANDTHEIRNEEDFOR TIMETOEITHERSTEPAWAYTOTAKECAREOFTHEMSELVESORINSOMECASES

ANEEDTOSIMPLYSLEEP3OMECAREGIVERSMADEDIRECTLINKSBETWEEN THEQUALITYOFCARETHEYWEREABLETOPROVIDEANDTHENEEDFORSOME TIMEAWAY !ND YOU KNOW THE THINGS ) NEED AS A CAREGIVER IS ) NEED SOME TIME FORMETIMETOO#AUSE)NEEDTIMEOTHERWISE )MGONNAGET FRUSTRATED)KNOW)WILL9OUREGONNAGETFRUSTRATEDAND YOUKNOW HOW AND WHY CAUSE ) SAW MY AUNT DO IT 3HE WOULD YELL AT MY GRANDMOTHERAND)DONTWANTTOEVERBECOMELIKETHAT/TTAWA *+#'

!LTHOUGHMOSTSPOKEOFADESPERATENEEDFORRESPITE SOMEFELT THATRESPITEASITISCURRENTLYARRANGEDWOULDNOTBEANAPPROPRIATE SOLUTION 7EDONTFEELTHATWECANHANDLEHERRIGHTNOWUM RESPITE ;PAUSE= ) KNOW THAT SHE WOULDNT BE AS CONTENT WITH A STRANGER THAT SHE WOULDBEWITHHEROWNFAMILYANYWAYSO)THINKSHEWOULDHAVE TOREALLYKNOWTHEPERSONBECAUSESHEWOULDNT WEWOULDNT FEEL COMFORTABLELEAVINGHERWITHANYBODY3HEDHAVETOREALLYKNOW WHOSHEWASWITHAND)DONTTHINKWECOULDEVENLEAVEHERWITH ANYBODYOTHERTHANFAMILYRIGHTNOW/TTAWA *+#'

!NOTHERPARTICIPANTCOMMENTEDONTHENEEDTOADJUSTRESPITE TOBEMOREAPPROPRIATEFOR)NDIGENOUSPEOPLESh9OUKNOWWHAT) THINKRESPITEWOULDBEREWARDINGFORALLOFUSCULTURALLYYOUKNOW CULTURALLYAPPROPRIATERESPITEv3UDBURY!+#' !-OOSE#REE PARTICIPANT COMMENTED THAT THE HOSPITAL BASED RESPITE SYSTEM COULDBEDETRIMENTALFORTHEPERSONWITHDEMENTIAANDTHATTHEY FELTITCAMEWITHTHERISKOFTHEIRLOVEDONEBEINGTRANSFERREDHUN DREDSOFKILOMETERSAWAY 9ES ITISASIGNIlCANTISSUEBECAUSETHEGOVERNMENTHERE NOTTHE !BORIGINALGOVERNMENTBUTTHEFEDERALGOVERNMENT )GUESSITIS OR PROVINCIAL WHOEVERSINCHARGEHASSAIDTHATWEDONTNEEDALONG TERM CARE HOME4HEREFORE WE HAVE ALL THESE DARLING OLD PEOPLE WHOARE WHOTHEFAMILIESARETRYINGTOTAKECAREOF THEYHAVENO WAYTOGAINANYRESPITE ONLYWAYTHEYCANDEALWITHITISIFTHEY

The caregivers in the study drew on either traditional Indigenous teachings and ceremony or Christian-based faith to cope and find strength.

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Jacklin et al.

All the caregivers shared stories of the challenges they faced caring for their loved one at home. CANGETRESPITEATTHEHOSPITAL4HERESONLYAFEWBEDSTOPLACETHE PEOPLE THATWHICHCONFUSESTHEMMORE ORWEHAVETOSHIPTHEM OUT AND)DOMEANSHIPTHEMOUTTOALONG TERMCAREFACILITY THE CLOSESTOFWHICHIS4IMMINS-OOSE#REE !+#'

-OSTPARTICIPANTSDIDNOTREPORTACCESSINGMAINSTREAMSERVICES SUCH AS THOSE PROVIDED BY THE !LZHEIMER 3OCIETY OF #ANADA OR SENIORSCENTERS)NSOMECASES THESESERVICESWERENOTAVAILABLEIN THEIRCOMMUNITYANDINOTHERCASES PARTICIPANTSREPORTEDTHATTHE MAINSTREAM SERVICES WERE NOT GEARED TO THEM THEY FELT UNCOM FORTABLEINTHEMAINSTREAMSETTING ANDTHEYFEAREDRACISM4HERE WASADESIREONTHEPARTOFSOMEPARTICIPANTSFORSUPPORTSERVICES WHICHTHEYFELTTHEYWOULDACCESSIFTHEYWEREGEAREDTOTHEMAS )NDIGENOUSPEOPLES BUTYEAH)DONTTHINKSHEWOULDDOWELLINNON !BORIGINAL PROGRAMSSOTRYINGTOlNDPROGRAMSTHATARESPECIlCTOOURCULTURE ISHARD3UDBURY #'!+ 4HEONETHINGTHATWOULDHAVEBENElTEDMEAND)SHOULDHAVE )SHOULDHAVEPURSUEDITWAS UM SUPPORTGROUP)THINKTHATIS WHAT IS NEEDED BECAUSE THEN YOU KNOW THERE IS SOMEBODY ELSE OUT THERE -AYBE WHAT )M TRYING OKAY ) CAME ACROSS THAT THIS ISWHAT)DID HOWABOUTTRYINGTHAT YOUKNOW,IKETHEDIFFERENT TOOLSORTECHNIQUESTHATARENOTONTHEINFORMATION)RECEIVED YOU KNOW MAYBETHEREISSOMETHINGDIFFERENT YOUKNOW ANDTHESUP PORTGROUPWOULDBE UM AGAIN WITH.ATIVEPEOPLE ITWOULDHAVE BEEN ITWOULDHAVEBEENGOOD)F)HADASUPPORTGROUP YEAH OF .ATIVEPEOPLE YEAH7IKWEMIKONG +0#'

!NDMANYDIDDESCRIBETHEINTENSEEMOTIONALEXPERIENCESTHEY WOULDGOTHROUGHASACAREGIVERTOAPERSONWITHDEMENTIAINCLUD INGFRUSTRATION ANGER ANDSTRESS )TDElNITELYDIDAFFECTMYRELATIONSHIPWITHHERNOTUNDERSTANDING UM WHATWASHAPPENINGTOHERFULLYANDITWOULDMAKEMEANGRY AND)WOULDARGUEANDTHATSONEOFTHETHINGSTHATONESHOULDNT DOWITHADEMENTIAPERSONISTOARGUEWITHTHEM BUT)DIDNTKNOW THATANDSO)WOULDBECOMEUPSETANDANGRYANDWEWOULDGETINTO IT!NDFOREXAMPLE UM )MENTIONEDTHATSHEWOULDMISPLACEHER PURSEANDSHEWOULDACCUSEMEOFTAKINGITORHIDINGITORTAKING THEMONEYANDTHATWOULDUPSETME TOO NOTUNDERSTANDINGWHERE SHEWASCOMINGFROMORWHYANDTHATWOULDMAKEMEANGRY3IX .ATIONS 4-#'

)NJUSTAFEWCASES GENDEREDCAREAROSEASASIGNIlCANTEMOTIONAL ORPHYSICALCHALLENGEFORBOTHMALESANDFEMALESCARINGFORSOME ONEOFTHEOTHERSEX "UT)THINKTHATSTHEHARDPARTISREALIZINGTHAT)HAVETOCAREFORMY MOMINAWAYTHAT )NEVEREVERTHOUGHT)DDOLIKEHAVINGTOCOMB HERHAIRORHAVINGTOYOUKNOWGETHERBRASOUTANDTHINGSLIKETHAT YOUKNOW!SAMALE LIKE)NEVERTHOUGHT)DEVERHAVEDOALOT OFTHINGSLIKETHATFORHER-ALECAREGIVER -OOSE#REE *2#' !ND)CANTGETHIMTOSITDOWNONTHETOILET WELL)DONTHAVE THEPHYSICALSTRENGTHTODOITALLBYMYSELF3OTHERETHATPHYSICAL PARTOFIT)DONTHAVETHATANDHE UM AH WOULDHAVEBEEN HEPRE FERREDTOHAVEAMALEBATHEHIMBUT)WOULDBATHEHIM4HATWAS HISPREFERENCELIKEHEDIDNTREALLYLIKETHEIDEAOFMEBATHINGHIM BUTITHAPPENSTHAT)TOLDHIMWEHAVETODOIT&EMALECAREGIVER -OOSE#REE *2#'

&AMILY DYNAMICS COULD BE A CHALLENGE 3OME FAMILIES SHARED CAREEFFECTIVELYHOWEVER MANYCAREGIVERSREPORTEDCHALLENGESARIS INGFROMOTHERFAMILYMEMBERSBEINGUNWILLINGTOSHARECAREGIVING DUTIES OR PROVIDE SUPPORT /FTEN ONE INDIVIDUAL SHOULDERED THE MAINRESPONSIBILITIESANDOTHERFAMILYMEMBERSCONTRIBUTEDINA SUPPORTINGROLE$ISAGREEMENTSABOUTCAREPLANNING NURSINGHOME PLACEMENT lNANCIALCONTROL ANDPOWEROFATTORNEYRESPONSIBILITIES OFTENSTRAINEDRELATIONSHIPSBETWEENSIBLINGS ) TOOK CARE OF MY MOM FOR THAT PERIOD OF TIME AND SO DID MY BROTHER-YOTHERSIBLINGSDIDTRYWHENSHElRSTCAMEOUT BUTTHEY SEENHOWHARDITWASWITHHERREPEATINGHERSTORIES THEYJUSTFOUND ITDIFlCULTANDTHEYSHENEEDEDALOTOFDOCTORSCARESOHERMEDI CATIONS HER APPOINTMENTS AND ALL OF THAT KIND OF STUFF THEY JUST COULDNTDOIT3OITENDEDUPTHAT)WASTHEONLYCARETAKERINTHE ENDANDTHEN)WASBURNINGOUTTOWARDTHEEND7IKWEMIKONG +0#'

3OMEPARTICIPANTSSHAREDHOWTHEINTERGENERATIONALIMPACTSOF COLONIALPOLICIESCONTINUEDTOAFFECTTHEIRFAMILIES THEPERSONWITH DEMENTIA ANDTHENATUREOFCAREGIVING)NMANYCASES CAREGIVERS FELTTHATTHEMOVEMENTOFFAMILYMEMBERSTOOTHERCOMMUNITIESOR CITIESTOPURSUEEDUCATIONORCAREERSHADLEFTTHEMWITHOUTTHEBUILT IN RESPITE THAT MAY HAVE ONCE BEEN THERE4HERE WERE ALSO THOSE WHO SPOKE DIRECTLY ABOUT FAMILY MEMBERS WHO HAD NOT HEALED FROMTHEIRRESIDENTIALSCHOOLEXPERIENCESANDSOWERENOTCAPABLE OFPARTICIPATINGINCAREGIVING 4HIS CAREGIVER FROM 3IX .ATIONS TALKS ABOUT THE COMPLEXITY OF EMOTIONS AND PERSONALITY THAT MAY COME WITH AN )NDIGENOUS PERSON WITH DEMENTIA BASED ON THEIR LIFE EXPERIENCES AS WELL AS EMOTIONALANDMENTALHEALTHISSUESAFFECTINGTHECAREGIVER )SSUESTHATCAUSEDANXIETYFOREXAMPLEMAYBEDRUNKENNESSINTHE HOMEORSTUFFTHATTHEYWENTTHROUGHIN;RESIDENTIAL=SCHOOLTHAT MAY THEYMAYSTILLBETRYINGTOCOPEWITHORHAVENTCOPEDWITH

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Indigenous Dementia Caregiving

ANDTHEYSTILLBETHEREANDINCARINGFORADEMENTIAPERSONALLTHAT MAYBECOMEOUTASWELL YOUKNOWINTHEIROWNLIFE!NDSOTHATIS PRODUCESACOMPLICATIONANDTHATCAREGIVERPROVIDINGTHATCAREFOR THAT!LZHEIMERSPERSON MAINLYFORTHECARE CAREGIVERFOREXAMPLE MYSELF )VE EXPERIENCED UM ANXIETY IN MY PAST IN GROWING UP QUITEABITOFITANDNOW)MONMYMOMSINTHENURSINGHOMEAND AFTERSHEWENTINTOTHENURSINGHOME)EXPERIENCEDALOTOFANXIETY SOTHAT)MANTIDEPRESSANTPILLSNOWANDNOTHAVINGBEENABLETO DEALWITHTHATANXIETYINTHEPASTMAINLY MAINLY)GUESSBECAUSE) DIDNTREALLYREALIZETHATITWASTHERE ITWASJUSTTHEWAYLIFEWAS3IX .ATIONS 4-#'

4HE SAME CAREGIVER GOES ON TO TALK ABOUT THE NEED FOR MORE INFORMATIONABOUTWHATTHEYMAYEXPERIENCEINTHATROLEANDAGAIN TIES THIS BACK TO UNRESOLVED ISSUES OR EXPERIENCES THE CAREGIVER THEMSELVESHAVEEXPERIENCEDINTHEIRLIFETIME !SITBECOMESMOREEXPERIENCEDONTHERESERVE )THINKTHATWILLBE HAPPENINGMOREPEOPLEWILLBECARINGFORTHEIRLOVEDONESINTHE HOME)TWOULDBEHELPFULTOHELPTHATCARE THATCAREGIVERTOKNOW WHAT THEY MAY EXPERIENCE IN GOING THROUGH SOMETHING LIKE THAT 5M ESPECIALLYIFTHATCAREGIVERHASHADTHEIROWNISSUESINTHEPAST 3IX.ATIONS 4-#'

!NOTHERCAREGIVERSPOKEFROMHEREXPERIENCEOFTHECHALLENGES RESULTING FROM DISRUPTIONS TO FAMILY STRUCTURES THAT OCCURRED BECAUSEOFTHE3IXTIES3COOPANDRESIDENTIALSCHOOLPROGRAMS )DONTKNOWHOWMANYSITUATIONSWHEREYOUREGOINGTOENCOUNTER WITHITSPARTOFTHE3IXTIES3COOPANDYOUREHAVINGTODEALWITH THAT UM WHOLEISSUEOF UM WHOPROVIDESTHECAREINTHATSITU ATION EVEN THOUGH )M TRADITIONAL ENOUGH IN MY PRACTICES THAT ) UNDERSTANDTHATCULTURALLYTHATSTHATOURROLETHEPRACTICEOF YOU KNOW REMOVING THE CHILDREN YOU KNOW THATS SOMETHING ) WOULDNTHAVEANTICIPATED )WOULDNTHAVEANTICIPATEDAND)TEACH SOCIAL WELFARE ) TEACH ABOUT RESIDENTIAL SCHOOLS SO THIS PIECE OF ITISLIKEWOWTHISIS THISISAHUGECONSIDERATIONTOTHAT)NEVER THOUGHTABOUTBEFORE WHATDOWEDOWHENTHEFAMILIESENVIABLY THEYREUNITE7HATDOWEDOWHENTHATCONCEPTORPARENTOR FAMILYISNTTHESAMEASCHILDRENWHOHAVEGONETORESIDENTIALSCHOOL

And many did describe the intense emotional experiences they would go through as a caregiver to a person with dementia including frustration, anger, and stress.

BUT RETURNED TO THEIR COMMUNITY BECAUSE ITS VERY DIFFERENT YOU KNOW THEY STILL HAVE THAT CONCEPT OF THAT FAMILY IS STILL THE SAME FAMILYWHEREWITHTHECHILDRENWHOHADLEFTANDREUNITEDATALATER DATEUSUALLYASADULTSTHEYDONTHAVETHATSAMECONCEPTASFAMILY 3UDBURY !+#'

Reflections Benefits and Rewards of Caregiving for a Person With Dementia $ESPITETHECHALLENGESANDPERSONALSACRIlCES CAREGIVERSALSOSHARED MANYMOMENTSOFJOYANDREWARDSTHEYEXPERIENCEDBECAUSETHEY HAD TAKEN ON THE CAREGIVING ROLE 0ARTICULARLY COMPELLING IS THE REMAINDEROFTHEEARLIERSTORYOFADAUGHTERWHORELUCTANTLYTOOK ONTHECAREGIVERROLEOFHERMOTHERAFTERMANYYEARSOFSEPARATION 4HEDAUGHTERWASFORCIBLYREMOVEDFROMHERMOTHERSCAREDURING THE3IXTIES3COOPˆA YEARPERIODIN#ANADAWHEN&IRST.ATIONS CHILDREN WERE BEING APPREHENDED BY CHILD WELFARE SERVICES AND ADOPTEDOUTTONON &IRST.ATIONFAMILIESATALARMINGLYINCREASED RATES !LTHOUGH THIS DAUGHTERS STORY BEGAN WITH HER FEELING OF hDUTYvTOTAKEONTHEROLE ASTHEIRRELATIONSHIPDEVELOPS SHEBEGINS TOACKNOWLEDGETHEREWARDSOFCARINGFORHERMOTHER !ND THE REWARDS ) THINK THE REWARDS ARE YOU KNOW TRYING TO REBUILD A RELATIONSHIP WHEN SEEING IT SLOWLY COMING TOGETHER FOR MYSELFANDHER BECAUSE YOUKNOW ITWASADISRUPTEDATTACHMENT) WASTHREEWHEN)LEFTANDSOASAMOTHERWOULDSTILLHAVEMEMORIES MYMEMORYOFHERASAMOTHERWASREPLACEDAND)ATTACHED MYSELFTOANOTHERMOTHERANDSOTHATRELEARNINGOURROLESORCOM INGTOTERMSWITHIT THERESAREWARDINTHAT4HESIMPLEJOYSLIKE WATCHINGHERDOAPUZZLE YOUKNOWTHOSESIMPLETHINGSTHATSHE CANDOANDSEETHELITTLETHINGS WHEREWILLSHEFOLDTHELAUNDRYOR )LLWALKINHAVINGBEENATTHESTORE)WALKINANDSHEHADPICKEDTHE BROOMANDSTARTSWEEPINGSOTHOSELITTLETHINGSWHERE)VESEENTHAT SHEHADTAKENWHAT)HADSAIDANDINCORPORATEDINTOADAILYROUTINE 3OTHERESIMPROVEMENTTHATSTHEREWARD

!ND SHE COMES TO REmECT ON EXPERIENCING MOMENTS OF JOY EXPRESSIONSOFLOVE ANDFEELINGSOFGRATITUDEFORTHEOPPORTUNITYTO HEALTHERELATIONSHIP !BOUT A MONTH AGO SHE CAME AND KISSED ME GOOD NIGHT BEFORE GOINGTOBEDAND)WASJUSTLIKE YOUKNOW )KINDAREALLYPULLEDBACK ANDSAYSOKAYGOODNIGHTAND)THOUGHTTHENEXTDAY)WASDRIVING TO WORK AND ) THOUGHT WHY IS THIS REALLY SIGNIlCANT WHY IS THAT AND)THOUGHT)KNOWWHY BECAUSEMYWHOLELIFE)LOOKEDFORTHAT ANDYOUKNOWNOW)M YOUKNOW THATWASTHAT YEAR OLDGIRL RECEIVINGTHATKISSLASTNIGHT YOUKNOW THECHILDWITHIN THATSWHY THISISSUCHAHUGETHINGANDITWAS ITWASVERYMOMENTTHATSHE WASINMYLIFEAND AH )HAVETOPROCESSTHIS3UDBURY !+#'

!LTHOUGH THIS CASE CONCERNING THE 3IXTIES 3COOP WAS UNIQUE THEREWEREOTHERSTORIESSHAREDTHATREmECTEDTHEGENERALTHEMEOF

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Jacklin et al.

Despite the challenges and personal sacrifices, caregivers also shared many moments of joy and rewards they experienced because they had taken on the caregiving role. RECONCILIATIONANDOPPORTUNITIESTOBECOMECLOSECLOSERTOALOVED ONEINTHECAREGIVERnPERSONWITHDEMENTIARELATIONSHIPASWELLAS WITHINTHEWIDERFAMILYANDBETWEENGENERATIONS 7ELL THERESVERYDElNITELYREWARDS5M THOSEBEING)WOULDSPEND THISMUCHTIMEWITHHERIFSHEHADNTGOTTENILL)WOULDNTBELIVING WITHHERANDSTAYINGWITHHER;3AMS=BESTFRIEND MYSON;3AM= DODAGRANDMA ISHISBESTFRIEND$ODASWHOHELOOKSFORATALL TIMESSOITISAHUGE HUGECOMFORTFORMEBECAUSESHELOVESHIMAND SHEPLAYSWITHHIMALLDAYLONG$AUGHTER 3IX.ATIONS 4-#'

)NTHENEXTCASE THESONDESCRIBESANOPPORTUNITYTOLEARNABOUT HISMOTHERWHENSHEWASYOUNGBUTALSOHOWTHECAREGIVINGROLE PROVIDEDANOPPORTUNITYFORHIMTORECONNECTWITHHIS)NDIGENOUS LANGUAGE )TSVERYREWARDINGTHATWAYBECAUSE)GETTOHEARSOMETIMESABOUT WHAT HER LIFE WAS LIKE WHEN SHE WAS A YOUNG GIRL4HOSE SORT OF THINGSTOOAREINTERESTINGTOMEAND ANDHOWTHEY;MYPARENTS= WEREWHENTHEYWEREAYOUNGMARRIEDCOUPLEYOUKNOW!NDSO ITS ITSAFUNNYTHINGLIKEYOU YOULEARNABOUTYOURMOTHERBUT YOUREALSOLEARNING LIKE FOR)VEBEENLEARNING#REE WHICHISSOME THING SHES BEEN TEACHING ME SO )VE NEVER SPOKEN #REE BETTER IN MYLIFETHANHAVINGTODOWHAT)MDOINGRIGHTHERE3ON -OOSE #REE *2#'

4HESEEXCEPTSSHOWHOWTHECAREGIVINGRELATIONSHIPBRINGSMANY BENElTSTOTHEFAMILIESBUTALSOHIGHLIGHTSHOWTHECAREGIVINGROLE HELPSTOSUSTAINIMPORTANTCULTURALVALUESSUCHASTHEIMPORTANCE OF )NDIGENOUS LANGUAGE INTERGENERATIONAL RELATIONS AND CULTURAL UNDERSTANDINGSOFILLNESSPROGRESSION

DISCUSSION 4HE STORY OF CAREGIVING PRESENTED PROVIDES US WITH A FRAMEWORK FORUNDERSTANDINGAPPROPRIATECAREFORAN)NDIGENOUSPERSONWITH DEMENTIA )T INCLUDES BEING CARED FOR AT HOME BY FAMILY CLOSE FRIENDS AND COMMUNITY 4HIS MODEL OF CARE HONORS TRADITIONAL

VALUES CONCERNING FAMILY RECIPROCITY AND RESPECT FOR THE OLDER ADULTS WHICH WERE FOUND TO BE CONSISTENT ACROSS DIVERSE )NDIGE NOUSTRADITIONSINTHEPROVINCE)TINCLUDESTHEOPPORTUNITYFORCUL TURALCONTINUITYANDHEALINGFROMINTERGENERATIONALTRAUMA/UR MULTISITEDAPPROACHTOTHERESEARCHALLOWEDUSTOEXPLOREREGIONAL DIFFERENCESBUTWEFOUNDTHAT ALTHOUGHTHECONTEXTOFCAREVARIED BETWEENTHESITES THEUNDERLYINGVALUESANDBELIEFSWERECONSISTENT /UR PARTICIPANTS HELD THIS UNDERSTANDING AS PART OF THEIR )NDIG ENOUS KNOWLEDGE AND WORLDVIEW AND EXPRESSED IT SIMPLY AS FACT 4HIS UNDERSTANDING HAS ALSO BEEN RECORDED IN OTHER )NDIGENOUS CONTEXTS #ROSATO 7ARD 'RIFlN  ,EIPERT  (ENNESSY  *OHN *ERVISETAL *ERVIS-ANSON   )NTHESE/NTARIOCOMMUNITIES FAMILIESAREPROVIDINGEXCELLENT CARE FOR THEIR LOVED ONES UNDER VERY CHALLENGING CIRCUMSTANCES /LDER)NDIGENOUSPEOPLEIN#ANADAOFTENFACEAMULTITUDEOFCHAL LENGESINCLUDINGMANAGINGMULTIPLEMORBIDITIES LIVINGINUNDER SERVICED COMMUNITIES DISRUPTED FAMILY CONNECTIONS STEMMING FROM INTERGENERATIONAL TRAUMA INEQUITABLE ACCESS TO MEDICATION AND SUPPORTIVE DEVICES SUBSTANDARD AND CROWDED LIVING CONDI TIONS RACISM ANDDISCRIMINATION4HESECOMPLEXNEEDS COUPLED WITHBARRIERSTODEMENTIATREATMENTANDCAREINCLUDINGALACKOF AWARENESSOFTHECONDITION LANGUAGEBARRIERS TRAVEL UNAVAILABIL ITYOFLOCALSERVICESANDDISTRUSTOFTHEWESTERNHEALTHCARESYSTEM "UCHIGNANI  !RMSTRONG %STHER  #AMMER  MAY CAUSE A HIGHER LEVEL OF STRAIN TO BE EXPERIENCED BY )NDIGENOUS CAREGIVERS -OST CAREGIVERS IN OUR STUDY SPOKE AT LENGTH ABOUT MOMENTSOFSADNESS FRUSTRATION PHYSICALANDEMOTIONALEXHAUS TION ANDANGERASPARTOFTHECAREGIVINGEXPERIENCE3OMESPOKE ABOUT UNRESOLVED TRAUMA AND GRIEF RELATED TO RESIDENTIAL SCHOOLS ANDTHE3IXTIES3COOP!NDSOMECAREGIVERSDISCLOSEDINJURIES EXAC ERBATIONOFSYMPTOMSOFOTHERMEDICALISSUES ANDALACKOFSLEEPAS SOMEOFTHEHEALTHIMPACTSOFCAREGIVING!NDYETWEFOUNDMOST CAREGIVERSPERSEVEREDINTOTHELATEANDlNALSTAGESOFTHEILLNESS AND MANYMAINTAINEDTHEABILITYTOREmECTPOSITIVELYONTHEEXPERIENCE 7EFOUNDACONSIDERABLELACKOFACCESSTOSUPPORTIVESERVICESFOR CAREGIVERS MOSTNOTABLYRESPITEANDINFORMATIONABOUTDEMENTIA !S OTHERS HAVE REPORTED CAREGIVERS STATED THAT THEY HAVE LIMITED KNOWLEDGEABOUTHOWTOPROVIDECAREANDTHATTHEYUSETRIALAND ERRORTODEVISEEFFECTIVECARESTRATEGIES(ENNESSY*OHN   4HELACKOFACCESSTOKNOWLEDGECOMBINEDWITHTHELACKOFAVAIL ABILITYOFFORMALPROGRAMMINGFORSENIORSCREATESSIGNIlCANTCHAL LENGES FOR )NDIGENOUS PEOPLE CARING FOR A PERSON WITH DEMENTIA COMPAREDTONON )NDIGENOUSPEOPLE #ONSISTENTWITHWHATOTHERSHAVEREPORTED*ERVISETAL  DESPITE THE CHALLENGES FACED BY THE CAREGIVERS WE FOUND DEEP RESISTANCE TOWARD RESIDENTIAL CARE FACILITIES 0ARTICIPANTS IDENTIlED PLACEMENTSINNURSINGHOMESASCONTRARYTOTHEIRVALUESCONCERNING FAMILY AND ALSO BELIEVED THE HOME ENVIRONMENT WAS THERAPEUTI CALLYSUPERIOR2EWARDSINCLUDEDTHESTRENGTHENINGOFRELATIONSHIPS ACROSS GENERATIONS OPPORTUNITIES FOR HEALING AND TO LEARN MORE ABOUT THEIR LANGUAGE AND CULTURE /THERS HAVE NOTED REMOVAL OF OLDER ADULTS FROM THE COMMUNITY INTO RESIDENTIAL CARE IS SEEN TO

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Indigenous Dementia Caregiving

This model of care honors traditional values concerning family, reciprocity, and respect for older adults, which were found to be consistent across diverse Indigenous traditions in the province. FURTHERDISRUPTTRADITIONALMODALITIESFORTHEPASSINGONOFKNOWL EDGE THATIS PREVENTINGTHETEACHINGANDLEARNINGOFCULTUREAND THE PASSING ON OF )NDIGENOUS KNOWLEDGE 'RAVES 3MITH %ASLEY  +ANAQLAK   &AMILIES ARE ALSO BETTER SUITED TO PROVIDE CULTURALLYAPPROPRIATECARETHATPROMOTESFAMILIALCONTINUITYAND PROVIDESANOPPORTUNITYFORSENIORSTOENGAGEINMEANINGFULROLES THATRESPECTTRADITIONALVALUESOFTEACHINGANDPASSINGONOFKNOWL EDGE)NDIGENOUSCAREGIVERSINOTHERSTUDIESHAVESIMILARLYREPORTED CAREGIVINGREWARDSINCLUDINGSTRONGERRELATIONSHIPSANDSEEINGAN IMPROVEMENT IN THE PERSON WITH DEMENTIA (ENNESSY  *OHN *ERVISETAL   !LTHOUGHMOSTPARTICIPANTSRESISTEDTHEIDEAOFRESIDENTIALCARE FOR THEIR LOVED ONE SOME CAREGIVERS IN -OOSE #REE &IRST .ATION REPORTEDTHEYWOULDCHOOSETHISOPTIONIFITWERECULTURALLYAPPRO PRIATEANDEASILYACCESSIBLE#AREGIVERSINTHEREMOTE&IRST.ATION OF -OOSE #REE MAY BE MOTIVATED BY THEIR EXCEPTIONAL LACK OF ACCESSTOSERVICESANDRESOURCESTOSUPPORTFAMILYCAREGIVINGAND THEDAUNTINGREALITYTHATIFRESIDENTIALCAREBECOMESNECESSARY THE CLOSESTFACILITYISKMAWAYANDCANNOTBETRAVELLEDBYCARROAD !T OTHER SITES WHEN PRESSED SOME PARTICIPANTS SHARED THAT IN EXTREME CIRCUMSTANCES THEY MAY CONSIDER RESIDENTIAL CARE FOR EXAMPLE IFTHEIROWNHEALTHFAILEDORTHECARENEEDSEXCEEDEDTHEIR CAPACITY ! COMMON CONCERN AMONG MANY OTHERS WAS THE POINT WHENTHEIRLOVEDONEWOULDNOLONGERRECOGNIZETHEM 2ESEARCH WITH MAINSTREAM SENIORS HAS DEMONSTRATED MANY BENElTS TO CARE RECIPIENTS OF BEING CARED FOR AT HOME INCLUDING SLOWER DECLINE AND LONGER LIFE EXPECTANCY -C#LENDON 3MYTH  .EUNDORFER  -ITTELMAN (ALEY #LAY  2OTH  -C#LENDON 3MYTH .EUNDORFER  )N/NTARIO THEPROVIN CIALHEALTHCARESYSTEMHASRECOGNIZEDTHESEBENElTSANDHASBEGUN TOIMPLEMENTPOLICIESANDPROGRAMSDESIGNEDTOHELPFAMILIESCARE FORFAMILYMEMBERSATHOME3INHA  9ETWEHAVESEENNO ADJUSTMENTSTOFEDERALHEALTHPOLICYGOVERNING&IRST.ATIONSHEALTH CAREORTORELATEDPOLICIESSUCHASHOUSING THATWOULDPROVIDESUP PORTFOR&IRST.ATIONSFAMILIESCARINGFORTHEOLDERADULTATHOME 4HEPRIMARYCAREGIVINGRELATIONSHIPSINTHISSTUDYWERELARGELY RESTRICTEDTOMEMBERSOFTHENUCLEARFAMILYWHOMAYORMAYNOTBE

SUPPORTEDBYEXTENDEDFAMILYANDFRIENDS7EFOUNDTHATCHANGES TOFAMILYANDCOMMUNITYSTRUCTURESAREIMPACTINGTHEABILITYFOR )NDIGENOUS FAMILIES TO PROVIDE CARE TO SENIORS WITH DEMENTIA ! SHIFTFROMEXTENDEDTONUCLEARFAMILIES URBANMIGRATIONRESULTING INLARGEGEOGRAPHICALDISTANCESBETWEENFAMILIES ANDMOREWOMEN WORKINGOUTSIDETHEHOMEARECONTRIBUTINGTOTHECHALLENGESFACED INPROVIDINGCAREATHOME7EALSOSAWHOWFAMILYSTRUCTURESHAVE BEEN FRACTURED BY THE IMPACTS OF RESIDENTIAL SCHOOLING AND CHILD WELFARE POLICIES WHICH CREATE UNIQUE CHALLENGES TO )NDIGENOUS FAMILIESENGAGINGINTRADITIONALELDERCAREPRACTICES4HISISEVIDENT ACROSSOURRESEARCHSITESANDHASBEENREPORTEDELSEWHERE#HAP LESKIETAL (ABJANETAL ,ANTINGETAL  !TA TIME WHEN THE NUMBER OF SENIORS IN )NDIGENOUS COMMUNITIES IS GROWING THE NUMBER OF AVAILABLE CAREGIVERS IS ACTUALLY SHRINKING 0ARRACK*OSEPH  MAKINGITINCREASINGLYIMPORTANTTHAT THEREAREAPPROPRIATESUPPORTSAVAILABLETOASSISTFAMILIESINTHEIR EFFORTSTOPROVIDECARE 4HERE WAS GREAT VARIATION AND INEQUITY IN ACCESS TO SERVICES BETWEENTHERESEARCHSITESANDAMONGPARTICIPANTS#AREGIVERSWHO WERE&IRST.ATIONSLEGALSTATUS)NDIANS LIVINGONRESERVEHADACCESS TOFEDERALLYFUNDEDON RESERVEHOMEANDCOMMUNITYCARESERVICES OFTEN STAFFED BY LOCAL COMMUNITY MEMBERS AND LANGUAGE SPEAK ERS WHICHSEEMEDTOIMPROVETHECULTURALSAFETYOFSERVICES4HEY ALSO HAD ACCESS TO NON INSURED HEALTH BENElTS FROM THE FEDERAL GOVERNMENTWHICHHELPSTOCOVERTHECOSTOFPRESCRIPTIONMEDICA TIONS AND MEDICAL DEVICES (OWEVER IT IS EVIDENT AND IS KNOWN THATTHEPOLICIESTHATGOVERNFEDERALHEALTHSERVICESANDPROGRAMS ARE WIDELY CRITICIZED AS BEING LIMITED AND UNDERRESOURCED COM PAREDWITHWHATISAVAILABLETOTHOSEUNDERTHEPROVINCIALHEALTH SERVICES OFF RESERVE NON &IRST .ATIONS 7E FOUND FOR EXAMPLE THATRESPITESERVICESWEREGENERALLYUNAVAILABLEINSOMEOFTHE&IRST .ATIONSAFTERMIDWAYTHROUGHTHElSCALYEAR4HEONnOFFRESERVE DIVIDEANDRURALANDREMOTENATUREOFSOMEOFTHESITESHADALSO RESULTEDINLIMITEDORNOSUPPORTSERVICESFROMOTHERPROVIDERSOR ORGANIZATIONSSUCHASTHE!LZHEIMER3OCIETYOF#ANADA 5RBANCOMMUNITIESHADMORESERVICEAVAILABILITY BUTPARTICI PANTSWEREHIGHLYRELUCTANTTOENGAGEWITHNON )NDIGENOUSORGA NIZATIONSCITINGTHEINAPPROPRIATENESSOFTHEPROGRAMMINGTOTHEM ANDFEAROFRACISM/THERSHAVEREPORTEDTHATTHEPACEOFWESTERN

Rewards included the strengthening of relationships across generations, opportunities for healing, and to learn more about their language and culture.

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Jacklin et al.

MEDICINE ITSFAILURETOUNDERSTANDCULTURALVALUES ANDDEEPLYAND HISTORICALLYIMBEDDEDMISTRUSTOFHEALTHCAREANDGOVERNMENTMAY BE A SIGNIlCANT DETRACTOR OF DEMENTIA CARE ACCESS ON THE PART OF )NDIGENOUS COMMUNITIES &INKELSTEIN ET AL  7E FOUND AT THEURBANSITES THEPARTICIPANTSWEREGRATEFULFORSERVICESPROVIDED BYTHELOCALhNATIVEFRIENDSHIPCENTRESvFORSUPPORTIVESERVICESAND CULTURALPROGRAMMINGANDTHE)NDIGENOUSHEALTHCENTERSFORMEDI CALCARE!TALLSITES THEPREDOMINANTCOPINGMECHANISMREPORTED BYCAREGIVERSWASRELIANCEONSPIRITUALPRACTICESOFPRAYERANDCER EMONYBUTMANYALSOREPORTEDRELIANCEONOTHERFAMILYMEMBERS ANDCOMMUNITYSUPPORTS 2EGARDLESSOFTHENUMBEROFSERVICESAVAILABLEINTHEIRCOMMU NITIES ALLPARTICIPANTSEXPRESSEDTHATTHEIRSERVICENEEDSWERENOT BEINGMET0ARTICIPANTSREPORTEDTHATTHEYNEEDEDMOREINTHEWAY OFPERSONALSUPPORTWORKERHOURS CULTURALLYAPPROPRIATESUPPORT GROUPS DEMENTIAEDUCATION RESPITE ANDSERVICESTHATREPRESENTED THEIRLANGUAGEANDCULTURE&URTHERMORE FAMILIESEXPRESSEDAGREAT DEAL OF CONCERN ABOUT THE LACK OF CULTURALLY APPROPRIATE PRIMARY HEALTH CARE SERVICES THAT WERE AVAILABLE AND THE LACK OF CULTURAL KNOWLEDGEHELDBYCAREANDSUPPORTPROFESSIONALS4HEEXPERIENCES SHAREDBYTHECAREGIVERSINTHISSTUDYSEEMTOSUGGESTACULTURALLY SAFEAPPROACHTOCAREWOULDATAMINIMUMINVOLVERESPECTFOR)NDIG ENOUSVIEWSOFDEMENTIAANDOFTHEAPPROPRIATENESSOFRESIDENTIAL CARE KNOWLEDGEOFTHECOMPLEXITYOFTHE)NDIGENOUSDETERMINANTS OFHEALTH UNDERSTANDINGTHEROLEOFTHEFAMILYINCARE RELATIONSHIP DEVELOPMENTWITHPRIMARYCAREPROFESSIONALSTOHELPMINIMIZEDIS TRUSTINTHEHEALTHCARESYSTEM CULTURALLYSPECIlCCOPINGSTRATEGIES KNOWLEDGE OF HISTORICAL POLICES THAT MAY AFFECT CAREGIVING TODAY AND OF CONTEMPORARY POLICIES THAT RESULT IN DIFFERENTIAL ACCESS TO CARE TRAINING ON APPROPRIATE ADVOCACY FOR )NDIGENOUS CAREGIVERS ANDPERSONSWITHDEMENTIA ANDTHEDEVELOPMENTOFHEALTHPROMO TIONANDPREVENTIONTOOLSTHATARESENSITIVETODIVERSE)NDIGENOUS PEOPLESUNDERSTANDINGSOFDEMENTIA$ESPITETHELACKOFSERVICES ANDCOMPLEXITYOFCAREFORTHISPOPULATION WEFOUNDTHAT)NDIG ENOUSFAMILIESAREPROVIDINGCAREINTOLATESTAGESOFDEMENTIAWITH VERYFEWSUPPORTSCOMPAREDTOWHATISAVAILABLETONON )NDIGENOUS FAMILIES

CONCLUSIONS 4HISSTUDYEXAMINED)NDIGENOUSFAMILYCAREGIVERSEXPERIENCESIN PROVIDINGDEMENTIACAREINDIVERSECOMMUNITYANDCULTURALCON TEXTS4HElNDINGSSUGGESTTHAT)NDIGENOUSVALUESCONCERNINGTHE IMPORTANCEOFAFAMILYCAREGIVINGMODELWASCONSISTENTACROSSTHE )NDIGENOUSCULTURESANDTHERURAL REMOTE ANDURBANCOMMUNITY CONTEXTSINCLUDEDINTHESTUDY)TWASWIDELYRECOGNIZEDTHATFAMILY CAREGIVINGWASPREFERRED APPROPRIATE ANDFACILITATEDINTERGENERA TIONALCONTACTANDTHETRANSMISSIONOFCULTURALKNOWLEDGE 4HECOMMUNITYCONTEXTIMPACTEDTHEACCESSIBILITYOFSERVICES GREATLY&EAROFRACISMANDTHEINAPPROPRIATENESSOFHEALTHSERVICES INTHEURBANCONTEXTGREATLYREDUCEDACCESSFORPARTICIPANTSDESPITE THE AVAILABILITY OF SERVICES4HE REMOTE &IRST .ATION COMMUNITY

At a time when the number of seniors in Indigenous communities is growing, the number of available caregivers is actually shrinking. FACEDTHEGREATESTCHALLENGEACCESSINGSUPPORTIVECARESERVICES%ACH COMMUNITYCONTEXTPRESENTEDHEALTHCARECHALLENGESMOSTIMME DIATELYATTRIBUTABLETOTHENATUREOFRELATIONSBETWEEN)NDIGENOUS ANDNON )NDIGENOUS#ANADIANSANDTHECONTINUEDCOLONIALPOLICIES GOVERNING ACCESS TO SERVICES -OST NOTABLY THERE WAS WIDESPREAD AGREEMENTTHATTHEREISANEEDFORAPPROPRIATERESPITESERVICESAND APPROPRIATEINFORMATIONONDEMENTIATOSUPPORTFAMILYCAREGIVERS )TISCLEARTHATALTHOUGH)NDIGENOUSFAMILYCAREGIVINGMODELSHAVE MANYSTRENGTHS THEREREMAINSAGREATNEEDFORCULTURALLYSAFEPRO GRAMS SERVICES ANDPOLICIESTOSUPPORTTHESECAREGIVERS

NOTES 4HETERMSIndigenousANDAboriginalARECURRENTLYUSEDIN#ANADAIN REFERENCETOTHEPEOPLESWHOSEANCESTORSORIGINALLYINHABITEDTHETERRITORY THATISNOW#ANADAANDTHE5NITED3TATESPRIORTOTHEARRIVALOF%UROPEANS 4HISISINCLUSIVEOF&IRST.ATIONS )NUIT AND-£TISPOPULATIONS)NTHISAR TICLE WEHAVECHOSENTOPRIMARILYUSETHEINCREASINGLYMOREACCEPTEDTERM IndigenousTOREFERTOTHE&IRST0EOPLESOF#ANADA4HETERMFirst NationsIS USEDWHENREFERRINGTO)NDIGENOUSPEOPLEWITHWHOARELEGALLYRECOGNIZED AShREGISTERED)NDIANSvANDASHAVINGh)NDIANvSTATUS )TISRECOGNIZEDBYTHEAUTHORSALONGWITHMANYOTHERSTHATTHECOLONIAL RELATIONSHIPBETWEEN)NDIGENOUSPEOPLESIN#ANADAANDTHE'OVERNMENT OF#ANADACONTINUESTOTHISDAY!LTHOUGHSOMECOLONIALSTRUCTURESAND POLICIES HAVE BEEN DISMANTLED OTHERS REMAIN IN PLACE AND PREVENT THE TRUEDECOLONIZATIONANDEMPOWERMENTNECESSARYTOREACHAhPOSTCOLONIALv STATE -£TISARE)NDIGENOUSPEOPLEIN#ANADAWHOAREDESCENDEDFROMMIXED )NDIANn%UROPEAN!NCESTRYANDTHEHISTORIC-£TIS.ATION

REFERENCES !LZHEIMER3OCIETYOF#ANADA Rising tide: The impact of dementia on Canadian society: Executive summary4ORONTO /NTARIO #ANADA !UTHOR 2ETRIEVED FROM HTTPWWWALZHEIMERCA^MEDIA&ILES NATIONAL!DVOCACY!3#?2ISING?4IDE?%XEC?SUMMARY?EPDF "OTSFORD * #LARKE #, 'IBB #% 2ESEARCHANDDEMENTIA CARINGANDETHNICITY!REVIEWOFTHELITERATUREJournal of Research in Nursing 16 n "RAVE(EART -9( 4HEHISTORICALTRAUMARESPONSEAMONGNA TIVESANDITSRELATIONSHIPWITHSUBSTANCEABUSE!,AKOTAILLUSTRATION Journal of Psychoactive Drugs 35 n

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Indigenous Dementia Caregiving

"RAVE(EART -9( $E"RUYN ,- 4HE!MERICAN)NDIAN HOLOCAUST(EALINGHISTORICALUNRESOLVEDGRIEFAmerican Indian and Alaska Native Mental Health Research 8 n "ROWNE ! 3MYE 6 !POST COLONIALANALYSISOFHEALTHCAREDIS COURSESADDRESSINGABORIGINALWOMENNurse Researcher 9 n "UCHIGNANI . !RMSTRONG %STHER # )NFORMALCAREANDOLDER NATIVE#ANADIANSAgeing and Society 19 n #AMMER ! Negotiating culturally incongruent healthcare systems: The process of accessing dementia care in Northern Saskatchewan 5NPUBLISHEDMASTERSTHESIS 5NIVERSITYOF3ASKATCHEWAN 3ASKATOON #ANADA 2ETRIEVED FROM HTTPLIBRARYUSASKCATHESESAVAILABLE ETD   #ARON -ALENFANT %  -ORENCY * $   Population projections by aboriginal identity in Canada, 2006 to 2031/TTAWA /NTARIO #ANADA3TATISTICS#ANADA #HAPLESKI %% 3OBECK * &ISHER # ,ONG TERMCAREPREF ERENCES AND ATTITUDES AMONG 'REAT ,AKES !MERICAN )NDIANS Care Management Journals 4 n #ROSATO + 7ARD 'RIFlN # ,EIPERT " !BORIGINALWOMEN CAREGIVERSOFTHEELDERLYRural and Remote Health 7  $ILWORTH !NDERSON 0 'IBSON "% 4HECULTURALINmUENCEOF VALUES NORMS MEANINGSANDPERCEPTIONSINUNDERSTANDINGDEMEN TIAINETHNICMINORITIESAlzheimer Disease and Associated Disorders 163UPPL 3n3 $URAN % $URAN " Native American postcolonial psychology !LBANY .93TATE5NIVERSITYOF.EW9ORK0RESS &INKELSTEIN 3! &ORBES $! 2ICHMOND #! &ORMALDE MENTIACAREAMONG&IRST.ATIONSINSOUTHWESTERN/NTARIOCanadian Journal on Aging 31 n 'RAVES + 3MITH 3 %ASLEY # +ANAQLAK '0# Conferences of Alaska native elders: Our view of dignified aging. National Resource Center for American Indian, Alaska native, and native Hawaiian elders.2ETRIEVEDFROMHTTPELDERSUAAALASKAEDU0UBLICATIONS YR?QUALITATIVEPDF 'OVERNMENT OF #ANADA 0RIME -INISTERS /FlCE   Statement of apology: To former students of the Indian residential schools2ETRIEVED FROM HTTPWWWPMGCCAENGNEWSPRIME MINISTER HARPER OFFERS FULL APOLOGY BEHALF CANADIANS INDIAN RESIDENTIAL (ABJAN 3 0RINCE ( +ELLEY -, #AREGIVERSFORELDERSIN &IRST .ATIONS COMMUNITIES 3OCIAL SYSTEM PERSPECTIVE ON BARRIERS ANDCHALLENGESCanadian Journal on Aging 31 n (ENDERSON * .   !MERICAN )NDIAN FAMILY CAREGIVING #ULTURAL CONTEXTANDDEMENTIAPATIENTCAREAnthropology News 50 n (ENDERSON *. (ENDERSON ,# #ULTURALCONSTRUCTIONOF DISEASE ! hSUPERNORMALv CONSTRUCT OF DEMENTIA IN AN !MERICAN )NDIANTRIBEJournal of Cross-Cultural Gerontology 17 n (ENNESSY #( *OHN 2 4HEINTERPRETATIONOFBURDENAMONG 0UEBLO)NDIANCAREGIVERSJournal of Aging Studies 9 n (ENNESSY #( *OHN 2 !MERICAN)NDIANFAMILYCAREGIVERS PERCEPTIONS OF BURDEN AND NEEDED SUPPORT SERVICES Journal of Applied Gerontology 15 n (INTON , )MPROVINGCAREFORETHNICMINORITYELDERLYANDTHEIR FAMILYCAREGIVERSACROSSTHESPECTRUMOFDEMENTIASEVERITYAlzheimer Disease and Associated Disorders 163UPPL 3n3 (ULKO 7 #AMILLE % !NTIFEAU % !RNOUSE - "ACHYNSKI .  4AYLOR $   6IEWS OF &IRST .ATION ELDERS ON MEMORY LOSS

ANDMEMORYCAREINLATERLIFEJournal of Cross-Cultural Gerontology 25 n *ACKLIN +  +INOSHAMEG 0   $EVELOPING A PARTICIPATORY AB ORIGINALHEALTHRESEARCHPROJECTh/NLYIFITSGOINGTOMEANSOME THINGvJournal of Empirical Research on Human Research Ethics 3 n *ACKLIN + 7ALKER * $  3HAWANDE -  4HE EMERGENCE OF DEMENTIA AS A HEALTH CONCERN AMONG &IRST .ATIONS POPULATIONS IN !LBERTA #ANADA Canadian Journal of Public Health 104 EnE *ACKLIN +  7ARRY 7   4HE )NDIAN HEALTH TRANSFER POLICY IN #ANADA 4OWARD SELF DETERMINATION OR COST CONTAINMENT )N ! #ASTRO  - 3INGER %DS Unhealthy health policy: A critical anthropological examination PP n  7ALNUT #REEK #! !LTAMIRA0RESS *ACKLIN +  7ARRY 7   $ECOLONIZING &IRST .ATIONS HEALTH )N * # +ULIG  ! - 7ILLIAMS %DS Health in rural Canada PP n 6ANCOUVER "RITISH #OLUMBIA #ANADA 5NIVERSITY OF"RITISH#OLUMBIA0RESS *ACKLIN + 7ARRY 7 &ORGETTINGANDFORGOTTEN$EMENTIAIN ABORIGINALSENIORSAnthropology and Aging Quarterly 33  *ERVIS ,, "OLAND -% &ICKENSCHER ! !MERICAN)NDIAN FAMILYCAREGIVERSEXPERIENCESWITHHELPINGELDERSJournal of CrossCultural Gerontology 25 n *ERVIS , ,  -ANSON 3 -   !MERICAN )NDIANS!LASKA NATIVES ANDDEMENTIAAlzheimer Disease and Associated Disorders 163UPPL  3n3 *OHN 2 (ENNESSY #( 2OY ,# 3ALVINI -, #ARINGFOR COGNITIVELY IMPAIRED !MERICAN )NDIAN ELDERS $IFlCULT SITUATIONS FEW OPTIONS )N $ 'ALLAGHER 4HOMPSON %D Ethnicity and the dementiasPPn 7ASHINGTON $#4AYLOR&RANCIS +LEINMAN ! Patients and healers in the context of culture: An exploration of the borderland between anthropology, medicine and psychiatry,OS!NGELES #!5NIVERSITYOF#ALIFORNIA0RESS ,ANTING 3 #ROSSLEY - -ORGAN $ #AMMER ! !BORIGI NALEXPERIENCESOFAGINGANDDEMENTIAINACONTEXTOFSOCIOCULTURAL CHANGE1UALITATIVEANALYSISOFKEYINFORMANTGROUPINTERVIEWSWITH ABORIGINAL SENIORS Journal of Cross-Cultural Gerontology 26 n ,OPPIE2EADING # 7EIN & Health inequalities and social determinants of aboriginal peoples’ health2ETRIEVEDFROMHTTPWWW NCCAH CCNSACADOCSSOCIALDETERMINATES.##!( ,OPPIE 7IEN?2EPORTPDF -C#LENDON -* 3MYTH +! .EUNDORFER -- 3URVIVAL OFPERSONSWITH!LZHEIMERSDISEASE#AREGIVERCOPINGMATTERSThe Gerontologist 44 n -C#LENDON -* 3MYTH +! .EUNDORFER -- ,ONG TERMCAREPLACEMENTANDSURVIVALOFPERSONSWITH!LZHEIMERSDIS EASEJournal of Gerontology 61 , 220–227. -ITTELMAN -3 (ALEY 7% #LAY /* 2OTH $, )M PROVINGCAREGIVERWELL BEINGDELAYSNURSINGHOMEPLACEMENTOFPA TIENTSWITH!LZHEIMERSDISEASENeurology 67 n 0ACE * %   Meanings of memory: Understanding aging and dementia in first nations communities on Mantioulin island Ontario 5NPUBLISHEDDOCTORALDISSERTATION $EPARTMENTOF!NTHROPOLOGY -C-ASTER5NIVERSITY (AMILTON /NTARIO #ANADA

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Jacklin et al.

0ARRACK 3 *OSEPH ' 4HEINFORMALCAREGIVERSOFABORIGINALSE NIORS0ERSPECTIVESANDISSUESFirst Peoples Child and Family Review 3 n 2ADFORD + -ACK (! $RAPER " #HALKLEY 3 $AYLIGHT ' #UMMING 2    "ROE ' !   0REVALENCE OF DEMENTIA IN URBAN AND REGIONAL ABORIGINAL !USTRALIANS Alzheimer’s & Dementia 11 nHTTPDXDOIORGJJALZ 3CHEPER (UGHES .   4HREE PROPOSITIONS FOR A CRITICALLY APPLIED MEDICALANTHROPOLOGYSocial Science & Medicine 30 n 3EGAL " 3MITH 3, National Resource Center for American Indian, Alaska native, and native Hawaiian elders: Establishing best practices for Alaska native elders 2ETRIEVED FROM HTTPELDERSUAA ALASKAEDUREPORTSYR?BEST PRACTICESPDF 3INHA 3 +   Living longer living well: Report submitted to the Minister of Health and Long-Term Care and the Minister Responsible for Seniors on recommendations to inform a seniors strategy for Ontario 2ETRIEVED FROM HTTPWWWHEALTHGOVONCAEN COMMONMINISTRYPUBLICATIONSREPORTSSENIORS?STRATEGYDOCSSENIORS? STRATEGY?REPORTPDF 3MITH + &LICKER , ,AUTENSCHLAGER .4 !LMEIDA / 0 !TKINSON $ $WYER ! ,O'IUDICE $ (IGHPREVALENCEOFDEMEN TIAANDCOGNITIVEIMPAIRMENTINABORIGINAL!USTRALIANSNeurology 71 n 3T 'ERMAIN '  $YCK , %   Reforming First Nations education: From crisis to hope: Report of the Standing Senate Committee on Aboriginal Peoples/TTAWA /NTARIO #ANADA3ENATEOF#ANADA 2ETRIEVEDFROMHTTPWWWPARLGCCACONTENTSENCOMMITTEE APPAREPREPDEC EPDF 3TATISTICS#ANADA !BORIGINALSENIORSIN#ANADA)N-4URCOTTE '3CHELLENBERG%DS A portrait of seniors in Canada: Introduction PPn /TTAWA /NTARIO #ANADA!UTHOR 3UTHERLAND - New visions and understanding: Alzheimer’s disease and related dementias with aboriginal individuals—roundtable forum. $OCUMENTPRESENTEDAT.OOJMOWIN4EG(EALTH#ENTRE !UNDECK /MNI+ANING /NTARIO #ANADA 7ALKER * *ACKLIN + #URRENTANDPROJECTEDDEMENTIAPREV ALENCE IN &IRST .ATIONS POPULATIONS IN #ANADA )N 7 (ULKO *"ALESTRERY $7ILSON%DS Indigenous peoples and dementia: Experiencing and understanding memory loss and memory care in three settler nations6ANCOUVER "RITISH#OLUMBIA #ANADA5NIVERSITYOF "RITISH#OLUMBIA0RESS 7ILSON + 2OSENBERG -7 !BONYI 3 !BORIGINALPEOPLES HEALTH AND HEALING APPROACHES 4HE EFFECTS OF AGE AND PLACE ON HEALTHSocial Science & Medicine 72 n

+RISTEN*ACKLINISANASSOCIATEPROFESSOROF-EDICAL!NTHROPOLOGY ATTHE.ORTHERN/NTARIO3CHOOLOF-EDICINE ,AURENTIAN5NIVER SITY (ER RESEARCH CONCERNS CULTURAL CONSTRUCTIONS OF HEALTH AND ILLNESSANDTHEINTERSECTIONOF)NDIGENOUSANDBIOMEDICALHEALING TRADITIONS AS THEY INmUENCE COMMUNITY BASED AND MAINSTREAM HEALTHCAREAND!BORIGINALHEALTHPOLICY3HEISCURRENTLYLEADING RESEARCH TEAMS INVESTIGATING AGE RELATED DEMENTIAS IN )NDIGENOUS PEOPLESIN#ANADA$R*ACKLINHASEXPERTISEINPARTICIPATORYAND

COMMUNITY BASED HEALTH RESEARCH WITH )NDIGENOUS POPULATIONS !BORIGINALHEALTHPOLICY CULTURALSAFETY QUALITATIVEMETHODS AND CROSS CULTURALMEDICALEDUCATION *ESSICA % 0ACE IS A POST DOCTORAL FELLOW IN THE $EPARTMENT OF (EALTH !GING3OCIETYAT-C-ASTER5NIVERSITY3HECOMPLETED HER0H$INTHE!NTHROPOLOGYOF(EALTHAT-C-ASTER5NIVERSITYIN $R0ACESRESEARCHINTERESTSINCLUDEPERCEPTIONSOFHEALTHY AGINGANDCULTURALUNDERSTANDINGSOFDEMENTIAANDDEMENTIACARE IN#ANADIAN)NDIGENOUSCOMMUNITIES 7AYNE7ARRYISPROFESSOR 3CHOOLOF2URALAND.ORTHERN(EALTH AND$IRECTOR THE#ENTREFOR2URALAND.ORTHERN(EALTH2ESEARCH #2A.(2 AT ,AURENTIAN 5NIVERSITY $R 7ARRY IS AN APPLIED MEDICALANTHROPOLOGISTWHOSERESEARCHCONCERNS!BORIGINALHEALTH AND HEALTH CARE BOTH ON AND OFF RESERVE (E HAS EXPERIENCE IN COMMUNITY BASEDRESEARCHANDMIXEDMETHODS PROGRAMDESIGN EVALUATION POLICYRESEARCH ADVOCACY ANDCROSSCULTURALAWARENESS TRAINING!T#2A.(2 HELEADSAPROGRAMOFRESEARCHCONCERNED WITHAPPLIEDHEALTHSYSTEMSRESEARCHANDRESEARCHWITHVULNERABLE POPULATIONS INCLUDING !BORIGINAL &RANCOPHONE RURAL AND RE MOTECOMMUNITIESIN.ORTHERN/NTARIO Acknowledgments.7EWISHTOACKNOWLEDGEOURCOMMUNITYAND ORGANIZATIONAL PARTNERS IN /NTARIO4HE 7IKWEMIKONG 5NCEDED )NDIAN 2ESERVE "AND #OUNCIL AND .AHNDAHWEH 4CHIGEHGAMIG 4HE 7IKWEMIKONG (EALTH #ENTRE  5NITED #HIEFS AND #OUN CILOF-NIDOO-NISSINGANDTHECOMMUNITIESOF:HIIBAAHAASING 3HESHEGWANING -#HIGEENG !UNDECK /MNI +ANING 7HITE lSH 2IVER AND 3HEGUIANDAH -NAAMODZAWIN (EALTH 3ERVICES -#HIGEENG (EALTH #ENTRE .OOJOMOWIN 4EG (EALTH 3ERVICES 3IX.ATIONS#OUNCILAND3IX.ATIONS(EALTH#ENTRE.3WAKAMOK .ATIVE&RIENDSHIP#ENTRE3UDBURY!NISHNAWBE-USHKIKI(EALTH #ENTRE4HUNDER"AY AND4HUNDER"AY)NDIAN&RIENDSHIP#ENTRE -OOSE#REE&IRST.ATIONAND-OOSE#REE(EALTH"OARDTHE/DA WA)NDIAN&RIENDSHIP#ENTRE/TTAWAANDTHELOCALCHAPTERSOFTHE !LZHEIMERS3OCIETY #ANADA4HANKYOUTO-ELISSA"LINDFORHERAS SISTANCEWITHTHEDATAANALYSISAND+AREN0ITAWANAKWATFORHERASSIS TANCEWITHTHEINTERVIEWS/URRESEARCHWASFUNDEDBYTHE!LZHEIM ERS3OCIETYOF#ANADA THE/NTARIO-ENTAL(EALTH&OUNDATION AND THE)NDIGENOUS(EALTH2ESEARCH$EVELOPMENT0ROGRAM 4HEAUTHORSWOULDLIKETOTHANK*ILL3HERMANATTHE#ENTREFOR 2URALAND.ORTHERN(EALTH2ESEARCHFORHERASSISTANCEWITHTHEMAP #ORRESPONDENCEREGARDINGTHISARTICLESHOULDBEDIRECTEDTO+RISTEN *ACKLIN 0H$ (UMAN3CIENCES$IVISION .ORTHERN/NTARIO3CHOOL OF -EDICINE ,AURENTIAN 5NIVERSITY  2AMSEY ,AKE 2OAD 3UDBURY /NTARIO #ANADA0%#% MAILKJACKLIN NOSMCA

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