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Nurturing Meaningful Intergenerational Social Engagements to Support Healthy Brain Aging for Anishinaabe Older Adults

Nakaazang Wenjishing naagdawendiwin, nji gechipiitzijig Anishnaabek

Published online by Cambridge University Press:  14 April 2020

Ashley Cornect-Benoit*
Affiliation:
School of Rural and Northern Health, Laurentian University, Sudbury, Ontario. Department of Community Health Sciences, Cumming School of Medicine, University of Calgary, Calgary, Alberta.
Karen Pitawanakwat
Affiliation:
Wikwemikong Health Centre Naandahwehtchigeh Gamig, Wiikwemkoong Unceded Territory, Ontario. Wiikwemkoong Unceded Territory, Manitoulin Island, Ontario.
Jennifer Walker
Affiliation:
School of Rural and Northern Health, Laurentian University, Sudbury, Ontario.
Darrel Manitowabi
Affiliation:
School of Indigenous Relations, School of Northern and Community Studies, Northern Ontario School of Medicine, Laurentian University, Sudbury, Ontario
Kristen Jacklin
Affiliation:
Department of Family Medicine and Biobehavioral Health, University of Minnesota Medical School, Duluth, Minnesota.
Wiikwemkoong Unceded Territory Collaborating First Nation Community
Affiliation:
Wiikwemkoong Unceded Territory, Manitoulin Island, Ontario.
*
La correspondance et les demandes de tirés-à-part doivent être adressées à : / Correspondence and requests for offprints should be sent to: Ashley Cornect-Benoit, MSc Department of Community Health SciencesUniversity of Calgary–Foothills Campus 3330 Hospital Drive NW Calgary AB T2N4N1 Canada ([email protected])
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Abstract

The emergence of Alzheimer’s disease and related dementias (ADRD) in Indigenous populations across Canada is of rising concern, as prevalence rates continue to exceed those of non-Indigenous populations. The Intergenerativity Model, guided by Indigenous Ways of Knowing, nurtures a psychosocial approach to promoting healthy brain aging and quality of life. Community-based participatory action methods led by interviews, focus groups, and program observations aid in identifying the barriers to and facilitators of success for intergenerational social engagements in the Anishinaabe community of Wiikwemkoong in northwestern Ontario. A qualitative thematic analysis guides future recommendations for programming opportunities that foster traditional roles of older First Nation adults and support intergenerational relationships. The results of this project elicit culturally appropriate recommendations for community-driven supports that address healthy brain aging. These outcomes are relevant to other Indigenous communities as the framework for determining that culturally appropriate health supports can be adapted to the unique context of many communities.

Résumé

RÉSUMÉ

L’émergence de la maladie d’Alzheimer et des démences apparentées (MADA) chez les populations autochtones du Canada est de plus en plus préoccupante, étant donné que la prévalence dépasse maintenant celle des populations non autochtones. Le modèle « d’intergénérativité », guidé par les savoirs autochtones, est axé sur une approche psychosociale visant à promouvoir le vieillissement sain du cerveau et à améliorer la qualité de vie. Les méthodes d’action participative communautaires impliquant des entrevues, des groupes de discussion et l’observation de programmes ont permis d’identifier des obstacles et des facilitateurs assurant la réussite des engagements sociaux intergénérationnels dans la collectivité Anishinaabe de Wiikwemkoong, dans le nord-ouest de l’Ontario. Une analyse thématique qualitative a orienté les recommandations futures pour le développement de programmes favorisant les rôles traditionnels des aînés des Premières Nations et soutenant les relations intergénérationnelles. Ce projet a mené à la formulation de recommandations culturellement appropriées pour favoriser le vieillissement sain du cerveau, grâce à des interactions sociales intergénérationnelles plus significatives. Les résultats de cette étude sont pertinents pour les autres communautés autochtones souhaitant adopter ce cadre d’action ou certaines de ses suggestions dans leur communauté.

Maanendidok debajimowaasaan

MAANENDIDOK DEBAJIMOWAASAAN

Eshkam getnaamshkaagonaawaa Anishnaabek maanda aawzowendamowin miinwaa aasaadziwin pii dash Megwenhik maampii Canada, aapichi znagendaagwad awashime ni baatiinwaat Anishnaabek eni naapinejig owi. Naabiisjigan gii zhichigaade Anishnaabe kendaaswin nakaazang wii naadmaagemgag wii ni mnamaadziimgag ni gchipiitzing owi wiinendip miinwaa maadziwin. Maamwi wiidookaaswin enskaamgag ndakenjigewin nakaazang nbwaachwewin, mizoodbiwin, dibaamjigewin wiimkigaadek enoondesek miinwaa waanaadmaagemgag wii ni aanke nakaazang Wiikwemikoong, Giiwedwaabanang, Ontario. Mooshkin weweni ndakenjigeng da naadmaagemgat waa ni naaknigeng naadmoondwaa geyaabi waabi yaajig. Owi dash gaa mkigaadek, Anishnaabe-aadziwin geni nakaazang wii miikming aasgaabowitaadwin wii ni mino gkaang. Maanda gaabi mkigaadek dani miikse naabiisjiganing Anishnaabe aadziwin ge naadmaagwaad kina Anishnaabek.

Type
Article
Copyright
© Canadian Association on Gerontology 2020 

Introduction

What is Known about Brain Aging in Indigenous Communities?

The emergence of Alzheimer’s disease and related dementias (ADRD) amongst Indigenous people across Canada is of rising concern, as Indigenous people and communities are living longer. The prevalence of ADRD has been identified to exceed rates in non-Indigenous populations, with prevalence rates of dementia in First Nations peoples in Alberta being 7.5 per 1,000 in comparison with the rate in non-First Nations peoples, which was 5.6 per 1,000 in 2009 (Jacklin, Walker, & Shawande, Reference Jacklin, Walker and Shawande2013). Knowing this, there is a growing need for culturally appropriate ways to support healthy brain aging1 within Indigenous2 populations across Canada. Previous research shows that there may be several factors that contribute to the increased prevalence of brain aging, including perceptions of the illness; impacts from the social, colonial, geographical, economical, and biological determinants of health; increased vulnerabilities caused by demographic transitions and geographic isolation; and the presence of various co-morbidities (Greenwood, de Leeuw, Lindsay, & Reading, Reference Greenwood, de Leeuw, Lindsay and Reading2015; Henderson & Henderson, Reference Henderson and Henderson2002; Jacklin et al., Reference Jacklin, Walker and Shawande2013; Smith et al., Reference Smith, Flicker, Lautenschlager, Almeida, Atkinson and Dwyer2008) including diabetes, hypertension, obesity, physical inactivity, and smoking. These risk factors are termed “modifiable” by the Alzheimer Society of Canada, and it is suggested that various ADRD cases amongst Indigenous populations may be preventable if addressed in an appropriate manner that is specific to Indigenous Ways of Knowing and Indigenous determinants of health models (Jacklin, Pace, & Warry, Reference Jacklin, Pace, E. and Warry2015; Jacklin et al., Reference Jacklin, Walker and Shawande2013; MacDonald, Barnes, & Middleton, Reference MacDonald, Barnes and Middleton2015).

In addition to co-morbidities as a potential cause for the increased prevalence of ADRD amongst Indigenous populations, perceptions of the medicalized health condition must be understood. Acknowledgement must be given to the unaligned and at times controversial difference of discourse between dominant medical perceptions of dementia and Indigenous beliefs about aging. Like many Western diagnosed medical conditions, one must acknowledge that individuals who speak different languages and have different cultural beliefs and traditions may not view a bodily change or changes in health in the same manner. Specifically, perceptions of dementia amongst First Nation communities do not always involve perceiving the aging brain as a problem or a concern that requires medication or hospitalization. Instead, some Indigenous community members have referred to local understandings that cognitive decline represents people going back to childhood or that their lives are now coming full circle. It is important to note that the use of medical language and the meanings of these words may not necessarily resonate with people or communities of different cultures and traditions (Indigenous Cognition and Aging Awareness Research Exchange, Jacklin, Warry, Blind, Jones, & Webkamigad, Reference Jacklin, Warry, Blind, Jones and Webkamigad2017a; Pace, Jacklin, & Warry, Reference Pace, Jacklin, Warry, Hulko, Wilson and Balestrery2019). Therefore, if understandings of health differ between worldviews, why should health care services and supports be provided with a generic or cookie-cutter approach?

Numerous communities have expressed concern regarding the attentiveness and degree of acknowledgement brought forth by primary care providers and health services to address the political, environmental, and cultural determinants affecting Indigenous peoples’ health. Addressing these concerns is essential for ensuring that appropriate and approachable opportunities are provided within communities (First Nations Regional Health Survey, 2017; Maar, Reference Maar2004; Reading & Wien, Reference Reading and Wien2012; Tobias & Richmond, Reference Tobias and Richmond2014; Williamson & Harrison, Reference Williamson and Harrison2010). Western approaches to health care are at times weakened because of the lack of consideration and trust for cultural differences, leading to an increased potential for unaddressed health concerns (Tang & Browne, Reference Tang and Browne2008; Twigg & Hengen, Reference Twigg and Hengen2009). Indigenous peoples and communities have begun combining Traditional and Western methods of healing to achieve beneficial health outcomes that foster unique ways of knowing (First Nations and Inuit Regional Health Survey National Steering Committee: First Nations and Inuit Regional Health Survey, 1997; First Nations Regional Health Survey, 2017). However, acceptance of these approaches can at times pose conflict with overarching policies that restrict the use of allotted funding for specific services or supports.

The recurring lack of understanding that mainstream health care services and supports demonstrate at times has led numerous First Nation3 communities to actively engage in reclaiming control over their health services (First Nations Regional Health Survey, 2017; Jacklin & Warry, Reference Jacklin, Warry, Singer and Castro2005, Jacklin & Warry, Reference Jacklin, Warry, Kulig and Williams2011; Maar, Reference Maar2004; Twigg & Hengen, Reference Twigg and Hengen2009). In doing so, Indigenous communities become the guiding voice that evokes desirable change to address health concerns where approaches become specific to the needs of the community. Current research suggests that Indigenous understandings of ADRD are grounded in cultural teachings that are specific to each community, and in some circumstances each family, which are often viewed as a “normal” and “natural” part of life (Finkelstein, Forbes, & Richmond, Reference Finkelstein, Forbes and Richmond2012; Henderson & Henderson, Reference Henderson and Henderson2002; Jacklin et al., Reference Jacklin, Pace, E. and Warry2015; Pace et al., Reference Pace, Jacklin, Warry, Hulko, Wilson and Balestrery2019). Knowing of such perceptions, a shift of practice from biomedical and pharmacological interventions to addressing the prevalence of ADRD in Indigenous populations must be supported. Through a Medicine Wheel Model of Prevention, advice about preventing dementia from older Indigenous peoples who are a part of the Canadian Consortium on Neurodegeneration in Aging (CCNA) Phase 1 Team 20 Advisory Group (Indigenous Cognition and Aging Awareness Research Exchange, Jacklin, Warry, Blind, Jones, & Webkamigad, Reference Jacklin, Warry, Blind, Jones and Webkamigad2017b) identifies meaningful intergenerational social engagement as influential. This article will explore the project’s alignment with advice from older Indigenous peoples by discussing the concept of intergenerational social engagements in relation to brain aging. The following sections of this article will unravel the connections between colonization and its impact on community well-being, the need for community-determined health services, and the factors associated with fostering meaningful intergenerational social engagements.

Determinants of Health and Health Care Equity: Understanding the Gap

Social determinants of health refer to the humanly and socially factored influences that uniquely affect populations (Raphael, Reference Raphael2009). The humanly factored influence of social exclusion gives acknowledgement to colonialism as a broader social determinant of health in Indigenous populations, affecting the health status of Indigenous peoples, and gives rise to questions concerning health care equity. Colonialism is the guiding influence that controlled and continues to control the historic, political, social, and economic frameworks that shape Indigenous and non-Indigenous relations. These factors can be viewed as collectively shaping and influencing the health and well-being of Indigenous peoples, where the perpetuation of a particular understanding or worldview is continual, resulting in “gaps” that create inequities for Indigenous peoples across various determinants of health. Specific determinants of health, as a result of colonialism, include unfavorable conditions for employment, income, education, housing, representation in the judicial system, health and well-being, and food security. The condition of a particular environment strongly influences health outcomes as well as individual and generational behaviors that present as “gaps” or spaces in which inequity is being perpetuated (Czyzewski, Reference Czyzewski2011; Greenwood et al., Reference Greenwood, de Leeuw, Lindsay and Reading2015; King, Smith & Gracey, Reference King, Smith and Gracey2009; Raphael, Reference Raphael2009; Warry, Reference Warry1998).

Determinants of health are closely associated with an increased prevalence of illness in Indigenous populations that ultimately affects communal well-being (Gracey & King, Reference Gracey and King2009; Greenwood et al., Reference Greenwood, de Leeuw, Lindsay and Reading2015; King et al., Reference King, Smith and Gracey2009; Raphael, Reference Raphael2009). However, not all Indigenous peoples and communities share the same experiences, and, therefore it is important to acknowledge that they might not endure the effect of these inequities and gaps in the same manner (Allan & Smylie, Reference Allan and Smylie2015; Graham & Leeseberg, Reference Graham and Leeseberg2010; King et al., Reference King, Smith and Gracey2009; Reading & Wien, Reference Reading and Wien2012). It is through acknowledging the uniqueness of each Indigenous community and person’s experience or perpetuated inequity that health care solutions must be grounded in an understanding that each person is unique but equal. It is evident that access to health care will be required at some stage in life, and yet many Indigenous communities are left unable to access the required level of care for numerous reasons. This results in a serious gap in health care access, an inequitable gap that is far too common for Indigenous peoples and communities compared with non-Indigenous peoples and communities. Some might propose that the solution is to seek health care services outside of one’s own community, yet this too possesses its own potential for inequitable treatment and experiences. Hesitance in seeking health care services for fear of judgement is an example of inequitable treatment that perpetuates the health gap between Indigenous and non-Indigenous peoples. Racial discrimination and stereotyping are commonly amplified in the mainstream health care system, which in some circumstances neglects to recognize, promote, and respect cultural safety and sensitivity (Allan & Smylie, Reference Allan and Smylie2015; Browne et al., Reference Browne, Varcoe, Lavoie, Smye, Wong and Krause2016; Jacklin et al., 2017; King et al., Reference King, Smith and Gracey2009; Ly & Crowshoe, Reference Ly and Crowshoe2015; Smylie & Firestone, Reference Smylie, Firestone and Raphael2016; Twigg & Hengen, Reference Twigg and Hengen2009). In addition to this, another important perspective to acknowledge is the desire to care for family members experiencing cognitive decline within immediate and extended family environments, as well as the community context to ensure that Indigenous and local values are being upheld and respected. Some families believe that care provided by family members centralizes the well-being of the ill person first, whereas Western approaches to health care put the disease first. It is imperative that the person come before the disease (Hulko, Reference Hulko2004), specifically in Indigenous communities where perceptions of illnesses and disease, and in particular memory loss, may differ from biomedical diagnoses and are felt to be normal, natural, and accepted (Jacklin et al., Reference Jacklin, Pace, E. and Warry2015). Within the context of brain aging, some families oppose seeking medical attention for a diagnosis as it brings back memories from childhood experiences with residential schools and “Indian Hospitals”, and optimal care is thought to be provided by the family and grounded in traditional values and belief systems (Jacklin et al., Reference Jacklin, Pace, E. and Warry2015; Jacklin et al., 2017).

In attempting to provide appropriate care to improve healthy brain aging, understanding the influence that the social determinants of health have on health care inequities provides a foundational basis for community-centered health initiatives to bridge the health gap experienced by Indigenous peoples. Removing the far too common experiences of structural violence created by policies and institutional practices that are inherently unjust to Indigenous communities is essential to dismantling health inequalities and providing appropriate solutions to bridging the health gap between Indigenous and non-Indigenous peoples (Browne et al., Reference Browne, Varcoe, Lavoie, Smye, Wong and Krause2016).

From Pharmacological Treatments to Intergenerational Social Engagements

ADRD research led in non-Indigenous communities suggests that there is merit in approaches that shift from pharmacological treatment to psychosocial interventions (Park, Reference Park2014). The imposition of medicalization and other social constraints limit the ways in which society can creatively, and most importantly address ADRD in a manner that is culturally appropriate and inclusive (Whitehouse, Reference Whitehouse2013). Whitehouse suggests that a more effective approach to addressing the increased prevalence of ADRD in all populations is to explore approaches that are less discipline based and more importantly focused on the relationships between humans (Whitehouse & Bendezu, Reference Whitehouse and Bendezu2000). Whitehouse and George (Reference Whitehouse and George2008) contest the idea that pharmacological approaches are the lone intervention for brain aging and believe that “approaches dedicated on the mentally and physically active self will improve the overall quality of life” (p. 147). This concept becomes the foundation for the Intergenerativity model, which centres on the development and promotion of psychosocial approaches for individuals with accelerated brain aging and memory loss. In particular, the model focuses on re-integrating individuals experiencing signs and symptoms of brain aging into meaningful social roles, enhancing their outlook on their quality of life (George & Whitehouse, Reference George and Whitehouse2010; Whitehouse, Reference Whitehouse2014). Individuals experiencing mild to moderate cognitive decline who attend an intergenerational school in Cleveland, founded by Dr. Catherine Whitehouse, Dr. Peter Whitehouse, and Stephanie Fall Creek (Intergenerational Schools, 2018), are noted to have aspects of their quality of life improved, which is highly attributed to the decreased level of stress associated with the intergenerational setting (George & Whitehouse, Reference George and Whitehouse2010). Whitehouse (Reference Whitehouse2014) explains this as the shift from pharmacological treatment to psychosocial interventions, which can be viewed in relation to perceptions of dementia amongst Indigenous communities gathered throughout Ontario as being a natural way of life that requires increased use of the brain in a meaningful way, most importantly through social connection (Pace et al., Reference Pace, Jacklin, Warry, Hulko, Wilson and Balestrery2019). This community collaboration explored one such approach that seeks to determine culturally appropriate ways to promote healthy brain aging through intergenerational social engagements.

A few Indigenous communities in Canada have expressed that fostering traditional roles is a way to promote meaningful social engagements within the community (Hulko, Reference Hulko2004; Hulko et al., Reference Hulko, Camille, Antifeau, Arnouse, Bachynski and Taylor2010; Jacklin et al., Reference Jacklin, Pace, E. and Warry2015; Pace et al., Reference Pace, Jacklin, Warry, Hulko, Wilson and Balestrery2019). Community perspectives of traditional roles have been acknowledged to differ amongst and within Indigenous communities. However, the transfer of knowledge through teaching has been recognized as a vital responsibility and passion of the older generations, and is extremely beneficial to Indigenous youth who on occasion express feelings of disconnect from their culture and community (Absolon, Reference Absolon2010; Braun, Browne, Ka’Opua, Kim, & Mokuau, Reference Braun, Browne, Ka’opua, Kim and Mokuau2014). Intergenerational engagements and ways of living are the foundational core of many Indigenous communities and has been for several generations. It is through the ramifications of colonization that intergenerational relationships have in some cases begun to deteriorate, creating a divide within communities that continues to influence the health of present and future generations. Such perspectives are reflected throughout this inquiry and aid in determining the barriers to and facilitators of success for intergenerational relationships to be nurtured within the community.

Historical Trauma: Why Intergenerational Engagements Must Be Nurtured within Indigenous Communities

Prior to conceptualizing how intergenerational programming can provide support for healthy brain aging in older First Nation adults, it is imperative to understand the consequences of past and present colonial constructs that influence intergenerational relations. As stated by Maurice Squires, “All problems must be solved within the context of the culture – otherwise you are just creating another form of assimilation” (Kovach, Reference Kovach2009, p. 75). Historically and presently, one of the most detrimental consequences of colonization was the implementation of residential schools (Union of Ontario Indians & Restoule, Reference Restoule2013). Qualitative research guided by the voices of residential school survivors identifies that the loss of identity, culture, and language experienced during that time has left some survivors feeling as if they do not belong, continuously searching for “what was left behind” (Truth and Reconciliation Commission of Canada, 2015). Through the process of searching for what was left behind, nurturing relationships amongst the generations becomes an important pathway towards locating oneself and restoring taken teachings (Chansonneuve, Reference Chansonneuve2005; Gone, Reference Gone2007).

Meaningful social interaction is referred to as being inclusive to cultures and traditions of Indigenous peoples and receptive to the particular needs of the community. Individuals from a community-based project in northern Ontario shared that in order for social interactions to be meaningful, traditional roles and activities need to be cultivated and disentangled from colonial traumas (Pace et al., Reference Pace, Jacklin, Warry, Hulko, Wilson and Balestrery2019). The reports developed by Indigenous communities in northern Ontario demonstrated that in order for health care services and programs to be considered culturally appropriate by health authorities and members of the community, honoring the importance and nurturing of Elder relationships amongst the generations must be acknowledged (Pace et al., Reference Pace, Jacklin, Warry, Hulko, Wilson and Balestrery2019). A common understanding of relationships is that they are interconnected, and that the “you” and “I” transition into the “we” (Ermine, Sinclair, & Jeffery, Reference Ermine, Sinclair and Jeffery2004; Nagel & Thompson, Reference Nagel and Thompson2006; Thompson, Cameron, & Fuller-Thomson, Reference Thompson, Cameron and Fuller-Thomson2013).

This project aims to uncover the barriers to and facilitators of success to promote intergenerational programming and meaningful social engagements that centres the “we” relationship. This was achieved by exploring how the Anishinaabe community of Wiikwemkoong Unceded Territory on Manitoulin Island could create and promote opportunities for older Indigenous adults to participate in intergenerational social engagements by understanding the barriers to and facilitators of success for intergenerational programs to enhance the quality of life for those experiencing brain aging. In addition, the project explored how the Model of Intergenerativity resonated with the distinct culture and traditional practices of the community.

Locational Understanding

Situating the Research

Manitoulin Island is located in the northern portion of the Georgian Bay and the northeastern area of Lake Huron. The island is home to seven First Nation communities and is traditionally known as Mnidoo Mnis, meaning “island of the Great Spirit”. Manitoulin Island is home to descendants of the Ojibwa, Odawa, Pottawatomi people (Francis, Reference Francis2011), locally referred to as the “Three Fires Confederacy”. Wiikwemkoong Unceded Territory is the largest populated Anishinabek community on Manitoulin Island and is also known to be within the top 20 largest communities in Canada (Francis, Reference Francis2011; Government of Canada, 2013).

This project was developed as a result of previously existing relationships among the Wiikwemkoong Community Dementia Research Advisory Group, Principal Investigator Dr. Kristen Jacklin and community researcher, Karen Pitawanakwat. This project welcomed individuals from all communities across Manitoulin Island; however, direct collaboration with Wikwemikong Health Centre Naandahwehtchigeh Gamig led the project’s development.

Situating the Self

The development, nourishment, and growth of relationships aid in maintaining our overall well-being. It is through these relationships that we are encouraged to be natural and authentic in the expression of the self, and we become interconnected, respectful, honest, and determined in research (Absolon, Reference Absolon2010; Absolon & Willett, Reference Absolon and Willett2004; Chilisa, Reference Chilisa2011; Hart, Reference Hart2010; Kovach, Reference Kovach2010; Lavallée, Reference Lavallée2009; Smith, Reference Smith1999; Weber-Pillwax, Reference Weber-Pillwax2004). Absolon and Willet’s (2004), Indigenous Research: Berry Picking and Hunting in the 21st Century, paints a fitting picture of the self in Indigenous research and the responsibilities that we have to uphold that go beyond the “start” and “end” of a “project”: “Yet, I know that I speak and write truly from my own position, experiences and perspectives and do not represent the Indigenous peoples’ voice. The only voice I can represent is my own and this is where I place myself” (p. 6). These words articulate and encompass my (Ashley ’s) place as a Mi’kmaw, French, Irish woman and an Indigenous community-based health facilitator. However, I bring to the forefront that I speak only from my own knowledge thus far in my journey and am humble in the notion that I have much to learn. Through the development of research relationships with Indigenous communities, it is important to disclose and include the voice of the self and individual experience. The honest and selfless understanding of the researcher’s presence in the project is the way in which I locate myself in this inquiry. I do not consider the sharing of these stories to be my representation as they are not my words. The voices of the community are not being represented by me but instead shared in order for the community to actively achieve self-determined health policies guided by community understandings. It is through the sharing of stories that awareness and relation bring forth the opportunity for change, development, exploration, and fostering of traditional approaches to health and well-being. I must acknowledge that the only voice I can represent is my own, but that through my commitment to community and heartfelt relations I am asked to share the voices of others simultaneously.

Methods

Indigenous Methodologies

In alignment with the Indigenous research paradigm, this project centres methodologies that encompass Indigenous Ways of Knowing. A shift from colonial perceptions of research, which align with a “you/I” opposition, instead now centres the development of healthy and meaningful relationships between the participating communities and researchers. In order to repair the destruction of trust as a result of colonial practices and historical research relationships with Indigenous communities (Bull, Reference Bull2010; Chilisa & Tsheko, Reference Chilisa and Tsheko2014; Gone, Reference Gone2007), methods guided by Indigenous Ways of Knowing, Being, and Doing need to be honoured. This project commits to doing so through community-basedparticipatory action research (CB-PAR) methods while “honouring orality as means of transmitting knowledge” (Kovach, Reference Kovach2010, p. 42) through storytelling.

CBPAR

Health research gathered in collaboration with Indigenous communities has often failed to bridge the health gap persisting between Indigenous and non-Indigenous peoples in Canada. In order to move beyond this gap, researchers need not to conduct research on Indigenous communities but instead focus on working with and for the communities (First Nations Information Governance Centre, 2014; Fletcher, Reference Fletcher2003; Jacklin & Kinoshameg, Reference Jacklin and Kinoshameg2008; Tobias, Richmond, & Luginaah, Reference Tobias, Richmond and Luginaah2007). The combined use of community-based participatory and action research (CB-PAR) methods creates opportunity for empowerment and acknowledges community needs as opposed to outsider observations implementing the project (Petrucka, Bassendowski, Bickford, & Goodfeather, Reference Petrucka, Bassendowski, Bickford and Goodfeather2012). CBPAR methods combine components of participatory and action research, which acknowledge the different ways of knowing and doing within a community. This method centralizes approaches that are culturally relevant to the community and empower marginalized voices while giving equal weight to the merit of scientific expressions or knowledge and of traditional or cultural expressions of knowledge (Ermine et al., Reference Ermine, Sinclair and Jeffery2004; Fletcher, Reference Fletcher2003). This project was developed based on the voices of community members, encompassing teachings specific to their unique ways of knowing that centralized self-determined approaches to health and well-being. Specific advice was identified by older Indigenous adults that pertained to how to prevent dementia through the teachings and ways of being in their community. This project was developed in response to the advice given by older Indigenous adults in the Manitoulin Island region of Ontario.

Conversational Method

The conversational method is in alignment with the Indigenous paradigmatic view, in the sense that the method (i.e., storytelling, community dialogue, sharing circles, focus groups, and interviews) is a valid form of sharing that fosters Indigenous Ways of Knowing (Kovach, Reference Kovach2010). The presence of orality in the research inquiry is appropriate and accepted, as it centres the voice of the community, encouraging traditional practices of storytelling as a way to translate knowledge appropriately (Kovach, Reference Kovach2010).

Inquiry Design

Community Guidance and Ownership

The stories gathered throughout this project belong to the Anishinaabe community of Wiikwemkoong Unceded Territory and remain an important aspect to improving the well-being and quality of life for individuals experiencing signs and symptoms of brain aging. Prior to engaging in the development of this project and the various connections and relationships developed in between the process of publishing the stories, confirmation and approval was sought from the Community Advisory Group, community researcher, and academic supervisory committee. Guidance from the pre-established Community Dementia Research Advisory Group, as part of the community’s involvement in Dr. Jacklin’s research was composed of Elders, current and previous program coordinators, health professionals, and community-based researchers. The Community Advisory Group offered their valuable time to provide an ongoing approval of the research development, support in recruiting participants through personal recommendations, and knowledge of local community centres and supports, as well as revising and commenting on the qualitative thematic analysis of stories shared by community participants.

Ethics Approval

This project was carried out with approval from the Health Authorities of Wiikwemkoong Unceded Territory on Manitoulin Island in Northeastern Ontario. Ethical approvals for this inquiry were sought through three guiding boards: the Manitoulin Anishinaabek Research Review Committee (MARRC), the Community Advisory Group for CCNA Phase 1 Team 20 projects in Wiikwemkoong, Ontario, and the Laurentian University Research Ethics Board.

Participant Recruitment and Engagement

All participants were recruited through purposive sampling methods. The notion of selecting purposive sampling for this inquiry is primarily the result of the intentional selection of community members to include those who are specific to the proposed research question (Tchacos & Vallance, Reference Tchacos and Vallance2004): First Nation youth and older adults. In addition to guidance provided by the Community Advisory Group, the community researcher and administrative staff from Long Term Care/Home and Community Care in Wiikwemkoong Unceded Territory also played a fundamental role in recruiting participants for focus groups and interviews.

Gathering the Stories

Knowledge, teachings, and stories were exchanged and shared by community participants in three different formats, including (1) key informant interviews (KII), (2) youth and older adult focus groups (FG-Y, FG-OA, FG-C), and (3) program observations. The ways in which the stories are attributed throughout this article will include KII for key informant interviews, FG-Y for focus group youth, FG-OA for focus group older adults, and FG-C for focus group combined.

Five key informant interviews were carried out with existing and previous directors of youth and seniors programs in Wiikwemkoong Unceded Territory. The purpose of the interviews was to determine programming opportunities that could support a sustained program promoting intergenerational social engagements. The setting in which the interview took place was decided upon by the interviewee ensuring that the participant was comfortable while partaking in the interview. The interviews were structured around awareness of current programming available in the community, and whether or not these opportunities nurtured intergenerational social engagements. The interviewees were also asked to comment on what an intergenerational program would look like in their community, acknowledging the barriers to and facilitators of success as well as suggestions for sustainability.

Focus groups were led by First Nation (1) older adults (55 years of age and older), (2) youth (8–16 years of age), and (3) combined age groups, to explore each group’s perspectives on how to develop a culturally relevant intergenerational program focusing on the interests of both generations. A gender balance was maintained throughout the recruitment process to ensure that both male and female perspectives were demonstrated in the interviews with a maximum of 12 community members participating. There was no formal maximum set for the focus groups, and any community member willing to participate was welcomed. Individual age-targeted focus groups were completed once within a close time frame to each other in order to uphold participant interest and engagement. Age-specific focus group attendees were guided to discuss their understanding of the other age group and how this affects the development of meaningful social engagements. Participants reflected upon the idea of generational roles in the community, as well as the changes noted throughout the years. Inquiries about what a future intergenerational program might look like in their community were discussed. Participants were prompted to reflect on what fostering intergenerational relationships might mean to them personally, to their understanding of brain aging, and to living healthy lives.

The stories were listened to and transcribed verbatim by the first author, Ashley Cornect-Benoit, as part of her Master’s thesis research project. Her training, supervisory support, Indigenous and western European identity, and commitment to developing meaningful relationships with community members positioned her as a safe and suitable choice to lead the research. The primary researcher’s relational approach to engaging with community members, the community advisory group, and other guiding leaders in the community developed reciprocal trust. The involvement of co-authors Drs. Jacklin and Walker in the advisory meetings served to provide an additional layer of oversight, observation, and analysis. The transcription allowed for a follow-up summary to be provided to each participating community member during the combined focus group through the format of a word cloud that elicited themes present in the existing conversation. This created an opportunity to achieve a common understanding of previous conversations and member checking, ensuring that what was shared by participating community members is what was presented in the summary. The repetition of the focus groups with older adults and youth also served a member checking purpose, ensuring that the stories shared were accurate, valid, and creditable (Kovach, Reference Kovach2010, pp. 131–132), which represented a secondary form of analysis. Table 1 shows the total number of individuals who participated in the project. Some community members were unable to participate in individual and combined focus groups, resulting in the differential representation for individual and combined focus groups. Specific values within this summary have been suppressed for privacy reasons.

Table 1: Summary of participating community member count for focus groups and interviews

Note. Data have been suppressed for privacy reasons.

Program observations were carried out at the youth centre and a local parish community gathering. These opportunities for engagement and observation provided insight into existing programming and established connections with the community members. These observations were not formally analyzed, but instead allowed intimate conversations to flourish between the first author and community members, in which more in-depth knowledge of their experiences in current programming opportunities was gained, helping to guide conversations with key informant interviewees and focus group participants.

Potential Individual Risks

Individuals who participated in the project were informed prior to gathering that all information and knowledge exchanged through interviews and focus groups would remain confidential with the primary investigator. Community members were encouraged to maintain confidentiality within the focus group gathering that they were participating in. However, anonymity was not fully guaranteed, because of the nature of the focus group methodology and the interview selection process. The most prominent risk present in the research inquiry was accidental disclosure. In small communities, individual responses are sometimes identifiable by other members of the community, based on their knowledge of the community and community members. For this purpose, community members were encouraged to withhold stories or knowledge that they were not comfortable with others being aware of.

Analysis

Qualitative Thematic Analysis

The use of qualitative thematic analysis for this inquiry was selected inorder to determine commonalities across the transcripts that aided in fostering meaningful relationships by acknowledging the barriers to and facilitators of success for intergenerational programming in the community. The themes also act as a framework to provide intergenerational recommendations for current community programming.

Stories shared by community members were gathered and digitally recorded, then transcribed verbatim. The transcripts were then thematically analyzed; a qualitative coding process looking for commonalities amongst the responses (Kovach, Reference Kovach2010) derived from focus groups and interviews. The review and analysis of the transcripts focused on (1) opportunities for program implementation as well as barriers to and facilitators of success; (2) culturally relevant program components; and (3) recommendations that could be shared with existent programs in the community to foster intergenerational social engagements.

Adapting the Qualitative Thematic Analysis through Indigenous Ways of Knowing

In addition to the six stages of a qualitative thematic analysis presented by Braun and Clarke (Reference Braun and Clarke2006), further steps were included in this analysis that pertained to community-based approaches inclusive of Indigenous knowledge and methodologies. First author, Ashley Cornect-Benoit, the Community Advisory Group and participating community members of the combined focus group, reviewed the initial coded outcomes and seven overarching themes that encapsulated participant and communal voices. During this review process, the advisory group and participants were shown prominent words, themes, ideas, thoughts and opinions pertaining to the discussions held during the gatherings in the formation of a word cloud (Figure 1). The word cloud allowed participating community members to reflect on previous conversations and initiate new thoughts pertaining to questions that guided the focus groups initially. A visual aid helped participating community members to recall previous conversations and provided opportunity for elaboration following the elapsed period of time since the original conversations occurred. It is important to note the inclusion of these additional steps, as changes to mainstream qualitative methods must occur when collaborating with Indigenous communities on community-based projects to ensure that voices are appropriately presented in project findings.

Figure 1: Word cloud presented to the combined focus group to describe older adult and youth focus group thoughts, ideas, and common themes

Findings

The following section is organized around seven themes that centralize stories and opinions regarding intergenerational programming in the community. Each theme encompasses diverse perspectives that are presented as either barriers to or facilitators of success in nurturing meaningful social engagements across the generations.

Theme One: Culture and Traditional Ways of Living Are Weakened and Need to Be Nurtured

For most participating community members, culture and traditional teachings were prominent in fostering traditional roles of older adults as well as improving social interactions between the generations. Unique perspectives of what culture and tradition signified to them, their families, and others in the community were emphasized.

This key informant interviewee shares an experience of change in traditions and culture from childhood to the present day. It is expressed that teaching is important for maintaining intergenerational relationships and creates an opportunity for youth to gain knowledge of how their ancestors lived.

“So that might mean storytelling, visiting, speaking the language. And, if we begin to do a lot more of that, not only does it help out that young person… but it also helps that Elderly, aging person. Again, back to telling those stories… it is transferring that knowledge back to our children. And that learning experience from our Elders, it helps the Elder with the memory, because you are going back to telling those stories…” (KII)

Community members talked about the diminishing presence of culture and traditional ways in the community. They discussed that the community had their voices taken away and were at times living in non-traditional ways. In particular, Elders4 were seen as community members who have had their voices taken away. A key informant interviewee explains potential reasons for this.

“They are not given a voice anymore. Their voice has been taken away. And I don’t know, you can blame it on residential schools, you can blame it on anything, but when I was a kid growing up … the seniors were the ones who were delegating. Yeah sure you saw a lot of the negativity, of people with the alcoholism because of the residential schools and things like that you know. But the spirit is broken in there some place. And maybe that is what it is all about.” (KII)

Encouraging the inclusion of culture in activities was deemed as the path that would provide older adults the opportunity to foster their traditional roles as teachers. One key informant interviewee shared that many Traditional Knowledge Keepers are passing on to the spirit world without having shared their teachings. Without encouraging and fostering opportunities for Traditional Knowledge Keepers to teach and share their teachings, the knowledge is being taken with their passing.

“You can hear the stories from the Elders in the language and it becomes more meaningful, because you are getting the true version. Rather than the English version… Our Knowledge Keepers have passed on, who may have once picked that medicine and knew exactly where it was, where to harvest it, knew exactly what it was for and then giving it to the people… Because the people are going out to the spirit world with the knowledge. It is not being transferred. Before they leave.” (KII)

Language was determined to be a factor that would bridge the gap currently present between several of the generations in the community. An older adult from the combined focus group shared a perspective on why speaking the language is important and how the presence of the native language fosters spirituality:

“And then from there I made the transition that I would just do Native spirituality…I think when we are just speaking English, we are not really our true selves. So speaking the native language make us true beings and so the spirituality is tied in with that because of what happened historically, we need to pick up our Native spirituality again.” (FG-C)

When inquiring about the entailments of intergenerational programs, all participating community members touched upon various aspects of culture, tradition, and language. Community members elicited that this needs to be acknowledged in order to continue moving forward to create appropriate community programs in a good way.

Theme Two: Changes in Society, Family, Community, and Relations Weaken Social Engagements between the Generations

Participating community members discussed change in unique ways that expressed this as a barrier to fostering intergenerational relationships. Some discussed change through a communal lens in relation to society, family, and community. Participating community members reminisced about how the community as a whole endured variation, including the roles of older adults and youth. One key informant interviewee discussed changes that have occurred in the community over time in relation to the roles of the generations. This key informant interviewee discussed how these differences in roles have been primarily present amongst the older population and attributed the changes in roles to altered values of people in the community.

“Things have changed quite a bit in the community, especially with the seniors in our community. I think what happened is the values of people have changed, now they are just like the regular adults.” (KII)

Participating community members also talked about societal differences from past to present and how this created barriers for meaningful social interactions. The barriers associated with change in the community were attributed to the presence of colonialism and its effects on the generations and the community. One key informant interviewee disclosed the changes that have happened to Indigenous peoples and their communities as a result of enforced colonialism.

“So much to learn, about ourselves and about other people. Because then you come to realize, it has happened to every culture, not just our culture. Every culture has gone through their changes… You can pick our culture out…” (KII)

A few participants also discussed change from a personal perspective. Fluctuations within the family were determined to be a major contributing factor to the social gap experienced between the generations. One participant expressed concern for changes in the family as a result of isolation that has become prominent. Re-establishing relationships in the family was deemed necessary.

“… And I think, “How did we get like that?” How did our families slowly unravel… like move apart and become isolated. In order to, thinking about when I am 55 and over and I would love for my grandchildren to come sit with me when I am 60 years old. And still have that healthy relationship and to continue telling the stories. You know, or when I am 65! And by then they are young adults. So it is a matter of keeping that relationship strong. And now I would say for some families it’s re-engaging those relationships.” (KII)

A member from the youth focus group shared a perspective on changes in the community and the repercussions that result from these changes.

“I think times have changed too eh. With kids. Like uh, I don’t know, some kids they don’t want to learn… Or just being straight up on their phones all day.” (FG-Y)

This community member continues to recognize the importance of educating the youth but stresses the challenges associated in doing so. She emphasizes determining common interests as a way to improve the comfort level between the generations. In recognizing common interests, communication pathways are strengthened and negative influential changes can be addressed.

“It is not easy to get down to talk to the kids. You know they’ll walk away… Especially with older people… But I don’t think you just walk in there and say oh you know we are going to talk about drugs. I think you have a role to play so that they will talk to you. Listen to you first of all. And you know be able to share with you. But I think they have to be comfortable with you at first.” (FG-OA)

Societal, familial, communal, and relational changes in the community were expressed to be barriers to improving intergenerational relationships, with opportunities for moving forward shared. Challenging, educating about, and sympathizing with such changes were deemed to provide opportunities to overcome the changes that are occasionally perceived as barriers to intergenerational relations.

Theme Three: Opportunities for Intergenerational Inclusion Encourage Equality, Community, and Self-Worth

The notion of inclusion came forth in various discussions with community members. Inclusion was referred to as addressing societal and generational inequalities, feeling safe and loved, a sense of belonging, and providing a unique gathering. The definitions of inclusion were described as being relational to feeling wholesome, balanced, and wanting to improve self-worth.

This key informant interviewee expressed frustration at the segregation amongst the generations, particularly in social engagements. Identifying opportunities to eliminate segregation were determined to aid in promoting inclusion:

“… That’s what our community is doing. I find that our community is saying ‘oh Elders, just sit down, somebody will come serve you!’ ” (KII)

One member of the community, who acknowledged the significance of engaging with the elderly population, addressed the importance of inclusivity. She confirmed that the translation of knowledge only occurs when all the generations relate to one another:

“Well yes because right now, the seniors are dying. I can count the seniors who are here. People used to tell us you shouldn’t be hanging out with those old people. Why not? We learnt so much from them!” (KII)

A member of the older adult focus group expressed similar concepts, sharing about the benefits of social engagement with the older generation as a way to learn, but also addressed the health benefits for older adults in doing so:

“I used to really enjoy talking to these older people. So, in visiting these older people, you awaken something in them you know. There is no room for dementia in there when they start talking. Because you have awoken something in them. You have awoken the knowledge that has been tested by fire in any different form. You know, you awaken that thing.” (FG-OA)

Self-worth, a feeling of belonging, and a sense of community are addressed when intergenerational inclusion is present. A few participating members of the community shared the benefits of inclusion for the older population, as well as the younger, and viewed this obstacle of inclusion as a main contributor to the gap between the generations. One key informant interviewee shared the joy felt by seniors at the senior centre when the younger generations were engaged, acknowledging the benefits for both generations, and fostering the idea of self-worth and community.

“And you see everybody get real happy too! Like when the kids went into Amikook, it was awesome! They came quite a few times too. Which was good! It is good for everybody. Even for the teachers of the class, “I have never seen my kids like this!” So this is good!” (KII)

Participating community members also expressed general understanding of the importance of inclusiveness in the community as a whole. One key informant interviewee acknowledged the idea of learning from one another as opposed to a unidirectional pathway of attaining new knowledge.

“I think we need to be inclusive. Again, it goes back to learning from each other and supporting one another. It doesn’t matter you know, you have a brain injury or you might have that memory loss, or whatever that person is going through. You have your healthier population that can support, and then you would just think, I would not separate it.” (KII)

Another key informant interviewee continued the discussion around intergenerational learning and elaborated on the concept of balance.

“They balance each other – the youth and the elders you bring it together and they will eventually balance themselves, they – the teenagers they’ll learn about history… it’ll give the Elders something to do and they will probably learn a lot more about technology and what’s going on in the future, they’ll learn about what’s going on in the news, politics, or whatever – whatever the kids are interested… it’s a balance.” (KII)

Members of the community discussed interest in learning new things, but opportunities to learn were not always prominent. Participants from the community drew attention to the idea of an apprenticeship to increase opportunities to learn new things. This key informant interviewee shared an experience with intergenerational communication and the benefits associated with its presence.

“…Having that intergenerational communication really helps with learning and I think that’s what happened to me you know I got it all from different places and I – I got the big picture early in my life, as opposed to people now who get it later on in life, which really helped.” (KII)

The experience perpetuates the required recognition of commonalities between the generations as a way to create mentorships.

“…They will form those bonds naturally, right, they will gravitate towards certain people and it will just blossom from there, yeah. It’s inevitable that the mentorship will happen… Well you know what they say, spirit guides you, so whatever you’re thinking…” (KII)

A community member from the individual youth focus group strengthened the concept of mentorship and apprenticeships as a pathway towards improving intergenerational relationships.

“That’d be really nice if they had some kind of apprenticeship program for youth, like just go, I don’t know if you guys are into jobs or something, like mechanics like some apprenticeship like that… That’s what they should be focusing on.” (FG-Y)

Inclusivity was connected with fostering the model of community. A community member from the combined focus group depicted community as being an approach to addressing inclusion. In fostering the model of community, the generations are provided with opportunities to become one through unity.

“The word is community. Cause at the end the word is unity. So it means like we are all one. So that could help with the feeling of belonging.” (FG-C)

Encouraging opportunities of inclusion through fostering intergenerational relationships also promotes traditional roles of older adults. Such opportunities provide both generations with the ability to learn from and teach one another, through the basis of inclusivity.

Theme Four: A Sense of Fear Felt by Youth and Older Adults towards Intergenerational Relations Perpetuates the Hesitation towards Engagement

Participating community members expressed thoughts of fear and hesitation relatively similarly across the generations. Hesitation to engage with other generations hindered one’s interest in participating in intergenerational social engagements. One member from the youth focus group shared a feared perspective and its association with participation in intergenerational activities.

“Like, some kids wouldn’t want to participate because there’s older people and they might feel like, I don’t know, like weird just being around them… they want to be around their own friends and own age group.” (FG-Y)

Notions of fear and hesitation were not only held by youth but also similarly voiced by older adults. This key informant interviewee shared the perspective of seniors in the community through her involvement with programming opportunities.

“The seniors would say, I don’t want those teenagers coming over here. They are going to wreck our gardens! This is what they are going to do. And they were just getting a big thumbs down.” (KII)

Shyness, fear of the unknown, disconnect, and judgement were a few of the reasons why both older adult and youth participants were hesitant about intergenerational relationships. Some of the community members admitted to misunderstanding the other generation and drew on conclusions that were based on assumptions. These processes perpetuated the fear of participating in intergenerational programs. One participant in the combined focus group related the fear of residential school to fear of the unknown. It is revealed that achieving comfort aids in diminishing fear, which ultimately hinders our ability to participate in various activities.

“Fear keeps us from doing many things. It, I guess it is the same thing as being scared of whatever has to be done. I am scared or I am too shy and I went into I think residential school, that is one word that I was afraid of. And that was fear of the unknown. But when you get used to what is around you well then you overcome that fear. And I was okay.” (FG-C)

Another participating community member encouraged the idea of strength as a way for youth to overcome the fears associated with engaging in opportunities that they may not be accustomed to.

“The desire to want something, the desire to do something about it, so that is what has to be put into the minds of young people it is not so much as, it’s not going to be handed to them, or to anybody. There are people that are gifted. But other people really have to learn hard you know, real hard about what you are going to do in life…You have to get past that role of fear.” (FG-C)

Language, in particular, was commonly discussed as being feared amongst both generations. One key informant interviewee drew on language as being a barrier between the youth and the older generations. However, opportunities to engage in speaking the language have created pathways for engagement between the younger generations.

“…And then of course we still have a lot of elders who speak our language, who are very fluent, so that could be a barrier sometimes between the youth, although that’s changing because our little, little ones are getting more and more immersed in the language but right now like teens, like probably 13, 14 right now there’s still a bit of that gap.” (KII)

Both younger and older community members acknowledged the complications associated with having individual differences and what this might mean in an intergenerational context. A member of the youth focus group acknowledged the need for commonalities to be sought between the youth and older adults in order to improve intergenerational engagements.

“… Like the older generation and the newer generation, they don’t have that much in common… So like, I don’t know, like all these kids they want to play hockey and stuff, the older generation they don’t really want to play hockey, you know what I mean? Like if they found some common ground.” (FG-Y)

Another member of the combined focus group shared a point of view on the presence of fear in connecting with others by elaborating on the need for people to be receptive as opposed to objective in order to eliminate persistent fear:

“To my point of view, society is like a group of people who like to follow around the lies, and never the truth. They throw rocks at you instead of flowers, they put the negative onto the person who’s already going through negative things, and build up problems… the word society scares me, and maybe people need to change their acts and words towards other people, like it’s not right and fair to be scared of people and the world…” (FG-C)

Intergenerational engagements evoke various fears and degrees of hesitation from community members, as expressed by both youth and older adults. Addressing the causation of fears and hesitation will aid in developing receptive pathways that foster intergenerational relationships. The establishment of such receptive pathways possesses the ability to improve well-being for all the generations engaged.

Theme Five: Policy Acts as a Barrier to Facilitating Interactions between the Generations

The barriers associated with funding can cause division amongst programming opportunities. Policies regarding funding were expressed as an obstruction to achieving inclusivity within the community. One key informant interviewee shared a perspective on accessible programming in the community and articulated that programming adheres to the funding it is associated with, as opposed to being guided solely by meaningful intentions.

“And all they are doing is running with program dollars for events… for job security.” (KII)

This key informant interviewee portrayed the presence of policy in programming and its association with funding. The formality of funding limits the community’s ability to inclusively engage.

“…I am only talking about the federal funding component right now, even provincial we have a few programs that are funded provincially. And they work with a specific group.” (KII)

Key informant interviewees expressed their personal frustrations with the presence of external government policies and internal governance issues. Segregated programming amplified frustrations, as attempts to create intergenerational program opportunities are frequently unsuccessful because of the lack of flexibility with policy. Initiating programming and the challenges faced involving local governance were explained by this key informant interviewee.

“Those kinds of issues that every place has. Those are our big annoying barriers. Even when I want to go into a community and do stuff, they will just sometimes say no. Even though everybody is saying ‘Yes! Come on!’ ” (KII)

Frustration expressed by participating community members demonstrated the need for support systems in order to address such exhausting tasks. Disregarding the systems and funding guidelines was not always a resistance-free path that community members would willingly embark on without consequence.

“I just tried everything, using all of the systems we had available to us, and nothing would work. I just couldn’t be employed… There was nothing available, so I couldn’t do it.”(KII)

Additionally, guidelines established by funding agencies neglected to include traditional and cultural aspects of the community. One key informant interviewee encouraged communities to stress the systems that have been placed on the community in order to determine whether this program or funding is beneficial to all.

“You have to look at systems and challenge them. Stress them out. See if they can handle it. And if they can’t handle it, then there is no need for it, no need to have this here… If it doesn’t work, it doesn’t work.” (KII)

Barriers created through funding systems must be eliminated in order to provide solutions for bridging the gap between the generations. Dismantling the walls established by policy-driven funding will promote inclusion and provide opportunities to nurture intergenerational social engagements.

Theme Six: Technology Generates Communication Challenges yet Sustains the Potential for Creating Engagement Opportunities across the Generations

The impeding presence of technology in the community was in alignment with perpetuating the gap present between the generations. The dominating presence of technology in the community was initially viewed as a concern by a majority of the youth and older adult community participants. A member of the older adult focus group shared his interpretation of technology in relation to the exclusion present in the community.

“…There is so much activity but there is no interaction…you can be sitting beside somebody, and they are so much on the machine but no talking. You don’t hear that nice voice anymore. You know, it is like in the office where there are these barriers. All you have to do, instead of texting somebody, you just stand up and talk to that person. It doesn’t happen.” (FG-OA)

A community member from the older adult focus group portrayed the individual presence of technology in daily life, which was similarly expressed by many. Intimate face-to-face conversations with others were preferred over the presence of technology.

“… Stop buying me these darn gadgets. I am not into technology. So that is the difference between a lot, well I am one of the people that is not up there with technology, I choose not to be, my thing is you want to visit me, then come and see me. Or pick up the phone and call me. But even conversations, everybody has conversations on Facebook.” (FG-OA)

However, some community members expressed that the presence of technology was an opportunity for youth and older adults to connect. Community programming associated with technology was identified by older adult participants as being successful through its ability to bring the generations together. This key informant interviewee shared an understanding of teaching opportunities that youth are given in the community with regards to the integration of technology. Interest shown for learning about technology by the seniors provided youth with meaningful engagements and opportunities to foster the disconnect between the generations.

“… And we fundraised and got some computers for the seniors. Adults were interested. And so [they] started having classes… for seniors who wanted to get familiar with Facebook and online banking and all these kinds of things. And it grew! People were interested and it was a program that they looked forward to. Kinda to get back in sync with everybody.” (KII)

Technology also aided in maintaining connection to family members no longer living in the community. Some older adult community members felt that the presence of technology was acceptable when utilized in moderation. The beneficial outcomes of engaging with technology in a useful and appropriate manner were conveyed.

“…Well with me yeah I have my cellphone that is about it. But on my cellphone I have Facebook, but again the cellphone and FaceTime like those are useful tools to have right? … that was useful for my dad when he was living, was having Facebook. Because that for him was how he stayed connected not only to his grandchildren but to his great grandchildren too. Because he could go on and see what everybody has been doing. He can go and read all of them comments… He said, “I stay connected that way.” (KII)

It became apparent that technology would not customarily foster traditional roles of older adults, but could create alternate communication pathways amongst community members. These pathways aided in fostering traditional roles of older adults, as opportunities for knowledge translation are nurtured. One interviewee shared an experience with knowledge translation through the use of technology.

“So again that’s something you can keep in mind with this program is visuals, I know Anishinaabe people are very visual as well, and I mean it’s the 21st century, there’s a lot of technology, YouTube, I mean I follow this gentleman who is from [location], lives in the states right now and he teaches language so he has little blogs I guess or whatever on YouTube and every now and again he posts them…” (KII)

The presence of technology was expressed to have beneficial as well as unfavorable effects on nurturing intergenerational relationships. The presence and use of technology was determined to be inevitable in the community. However, awareness regarding its appropriate use and inclusion in intergenerational programming can provide pathways to bridge the partial social engagement gap between the generations.

Theme Seven: Natural, Unique, and Fun Activities Empower Intergenerational Relationships

Participating community members spoke of barriers to and facilitators of success in various contexts throughout the interviews and focus groups. Fun was referred to as a necessity in life, which must also be forecasted into intergenerational engagements. A member of the older adult focus group shared his perspective of fun and its relation to all aspects of life. Approaching intergenerational programming through a natural perspective, which is understood as being an innate process, promotes fun and unique experiences that aid in the continued development of traditional roles.

“You have to look at it as fun. So in the community what are the wants, the big want that we have is to have fun doing the things that we need to do. Have fun being a mother. Have fun being a father. A grandfather…You have to act those roles. That is the beauty of life.” (FG-OA)

Fun was described as incorporating a relatable and encouraging environment into programming opportunities. Participating community members described fun as a natural entity that is present in the Anishinaabe culture and is unique to each person. Community members conveyed approaching intergenerational programming opportunities in a humorous way that makes the engagements natural and fun.

“So it needs to be across the board no matter what age you are because we know that we learn from one another. We can all re-learn how to have fun in a healthy way, whatever it may be, skating on the ice…”KII)

A member of the combined focus group shared how fun and natural engagements are the basic foundations to intergenerational relationships. Unique activities foster the notion of fun as being imperative to bridging the gap between the generations.

“As long as you make it fun for the child there or youth. As long as there is good vibes and whatever you are teaching them with, if you are real stale with talking to them, telling them how to, I don’t know, how to bake a cake or something, I don’t know, as long as you make it fun!” (FG-C)

Unique and interesting activities that pertained to youth and older adults in the community would promote personal levels of relationship as opposed to generic gatherings. Inclusion of all the generations in programming was portrayed as being an overall better experience by one key informant interviewee.

“But, every time I go somewhere I make sure that’s always included, that there are always kids… I always tell them to bring their kids. For the week or however long we are spending together, because it is always better. Always way better when the kids are there. Or bring your parents! So a lot of them will bring their parents. And you can see that it is way better. But we are just starting to realize that now.” (KII)

Discussion

The presented themes developed from the interviews and focus groups are viewed in relation to the importance of Indigenous knowledge in health services, the health gap experienced by Indigenous people, the historical and current presence of colonial constructs, the importance of meaningful intergenerational social engagements, traditional roles of older adults, and the need for culturally appropriate care for brain aging in First Nation communities. The seven themes provide a unique perspective into how the community of Wiikwemkoong creates and promotes opportunity for intergenerational social engagements that address the increased prevalence of brain aging in older adults as well as youth well-being. Through community-developed health initiatives that centralize community voices, pathways towards Mino-bimaadiziwin, an Anishinaabemowin teaching and way of living that translates to “good life” (Craig & Hamilton, Reference Craig and Hamilton2014) are achieved.

Participating community members recognized the importance of Indigenous knowledge systems as a way for older adults to engage in meaningful social interactions and ultimately foster the need for self-determined health services in Indigenous communities. The lack of meaning and appreciation for these knowledge systems commonly demonstrated by non-Indigenous health professionals was referred to as a repercussion endured by community members as a consequence of colonization. Some community members, especially when aiming to address health concerns in the community, elaborated on the idea of assimilation as a continuous cause for the weakening of culture and traditions. As presented in the seven themes, community members expressed various ways to facilitate the resurgence from such assimilative policies, but noted that there are barriers presented along the way. A majority of the stories shared focused on various changes that were both helpful and unhelpful in their community and traditional knowledge systems. Some of these changes were noted to create challenges within the community, including the need for cultural appropriateness not only in health care services and supports, but also in the community as a whole, including culturally appropriate programming to address brain aging.

Referring to the survivors of Canada’s residential school system, Brasfield (Reference Brasfield2001) declared that the negative impacts of colonization are continuously affecting the generations and will present similarly to future generations. The stories shared by community members aligned with this understanding of residential schools and termed this to be a barrier that continuously perpetuates the weakening of intergenerational social engagements. Some participating community members spoke of their parents’ or grandparents’ attendance at residential schools and how their experiences are still existent in the lives of the younger generations today. Colonialism and residential schools were noted as influencing the diminished presence of language, culture, tradition, and traditional knowledge (Absolon & Willett, Reference Absolon and Willett2004; Chansonneuve, Reference Chansonneuve2005; Gone, Reference Gone2007; Smith, Varcoe, & Edwards, 2005) in the community. It is through colonialism and residential schools that the systemic effect of assimilation impedes Indigenous communities today, creating and increasing the relational gaps between the generations. It is through similar conversations that have guided this project that Indigenous communities can begin and continue to heal from the presented traumas, and develop meaningful changes to the colonial-like structures and behaviors that resonate with traditional understandings of being, prior to the influx of assimilative policies.

The continued revitalization of culture and traditional teachings through community-developed health services and supports creates possibilities to reconcile and heal from the marginalization of Indigenous peoples that is continuously occurring across many social services. The themes presented in this article elicit the importance of community involvement in developing health solutions. Community voices must be present when aiming to develop health policies, services, and supports to ensure that relevancy and appropriateness are adhered to and speak to specific community needs. For example, in order to determine how preventing cognitive decline can be explored through fostering intergenerational social engagements, in-depth community consultation must occur and be inclusive of all voices and generations. Health systems need to begin dismantling age-segregated services and acknowledge that health ailments affect previous and past generations and that this is an important aspect in understanding wholistic perceptions of health and well-being amongst many Indigenous communities. This perspective will also aid in moving away from siloed care, that is currently the dominant narrative in Western health care systems. Inclusive discussions will increase community awareness regarding the required presence of their voices and also provide non-Indigenous peoples with an understanding as to why community consultation must occur. Instead of perpetuating a siloed cookie-cutter approach to health services “for” Indigenous peoples, the discussion needs to shift to how can community needs be voiced and be equally acknowledged within Western constructs of health and policy development. An example of this is demonstrated through previous community consultations with members of Wiikwemkoong Unceded Territory. Participating community members and health care providers acknowledged that understanding dementia needed to be portrayed in a way that was relevant to the community. In this example, dementia fact sheets were created by Indigenous individuals living with cognitive impairment, their family caregivers, and other community members who played an important role in the care of people living with dementia (Indigenous Cognition and Aging Awareness Research Exchange et al., Reference Jacklin, Warry, Blind, Jones and Webkamigad2017a). Relevant health services and supports cannot merely be informed through theory and practice; the integration of community voices as being equally valid must be upheld through community, provincial, and federal health jurisdictions.

To reiterate Dr. Peter Whitehouse’s suggestion, a more effective approach to addressing the increased prevalence of ADRD cannot be solely achieved through pharmacological interventions; acknowledging the importance and relevance of relationships among humans is also necessary (Whitehouse & Bendezu, Reference Whitehouse and Bendezu2000). The Intergenerativity Model’s ability to foster specific cultural and traditional perspectives within social relations ensures its success as a concept derived from Western medicine in the Anishinaabe community of Wiikwemkoong. Exploring this model in relation to culturally appropriate opportunities to promote healthy brain aging in Wiikwemkoong Unceded Territory is supported by the voices of participants. Attention is given to the current barriers associated with age-segregated initiatives but also supports the informal intergenerational social engagements that occur on a regular basis in the community. A participating community member from a community report completed in Northern Ontario (Pace et al., Reference Pace, Jacklin, Warry, Hulko, Wilson and Balestrery2019) shared that there is a need to appropriately, meaningfully, and regularly use one’s brain in order to prevent losing it, consistent with the purpose of the Intergenerativity Model. Although the Intergenerativity Model provides a non-Indigenous approach to fostering meaningful social interactions to address the increasing prevalence of brain aging in the older generations, the themes presented in this article elicit specific barriers to and facilitators of success to achieve a similar opportunity for Anishinaabe communities as with the Intergenerativity Model. Through the model’s ability to adapt to specific contexts, its relevancy to Wiikwemkoong Unceded Territory is significant in addressing brain aging from a psychosocial lens that is culturally inclusive and appropriate. The model is founded on the basis of social gatherings, a way of life that many of the Anishinaabe communities in northern Ontario continue to grow up on: the oral way of teaching, knowing, and being. Pathways that promote the inclusion of culture, tradition, and language as culturally relevant approaches to health care are viewed as significant pillars to many Indigenous communities (Southwest Ontario Aboriginal Health Access Centre, 2015). Through communal guidance and consultation, it has been recommended that in order to explore and nurture traditional roles of older adults as a community-developed way to address brain aging, values and customs that remain strong to many Anishinaabe communities must guide the pathway towards appropriate health care solutions.

The gathering of communal voices prompted the community of Wiikwemkoong to engage in self-determined health supports that encompass unique perceptions of what traditional roles resemble in their community, the barriers to and facilitators of success with intergenerational relationships, and culturally appropriate pathways to address brain aging. The presented themes are recognized as being recommendations for current and future programs in the community and strengthen the need for future community collaboration on defining health services and supports. These recommendations encourage the communal voice to be the guiding pathway for the health changes that the community wishes to seek and at times the challenges associated with colonial governance that must be overcome. The need for community-driven health solutions is present in this project and gives strength to the community in seeking culturally appropriate care for the health and well-being of their community.

It is anticipated that potential outcomes of this project will not only present as being influential for individuals experiencing cognitive decline, but will also have an influence on numerous generations in the community. The project provides reason through communal voice for the fostering of traditional roles, culture, language, traditional teachings, spirituality, and intergenerational relations. Communal voices give reason to the need for fostering these significant aspects of the community, with the benefits being not only to improve brain aging, but also for the wholistic well-being of the community and future generations to come. Encouraging community empowerment can challenge structures that silence the individual voice, in turn creating opportunities for the community and future generations to continue govering their own approaches to health services and supports. Community recommendations for current and future programming hold the opportunity to make changes that will not only benefit the aging population or the current members of the community, but the seven generations to come. In addition to strengthening local health initiatives, these stories uphold the potential to influence provincial and federal policy makers, ensuring that newly developed policies pertaining to aging populations are relevant and relational to community contexts, in both Indigenous and non-Indigenous communities and populations. Specifically, alignment of macro and micro levels of support is imperative when aiming to address the present health gap for Indigenous peoples and communities across the country. Acknowledging that culture and tradition play a significant role in understanding dementia and the process of brain aging nurtures the individual and community experience and encompasses a wholistic approach to care, as opposed to only recognizing symptoms that evoke treatment. Western traditions and traditionalists might incorporate such concepts into their provided care. However, Western-trained service providers must realize the significance of individual or cultural perceptions prior to comprehending approaches such as the Intergenerativity Model, which would ultimately result in a shift in care for individuals with dementia, as well as for any individual living with any health ailment. It is imperative that Western traditionalists encompass perceptions of the entire disease, including the mental, physical, spiritual, and emotional aspects, in order to ensure that well-informed wholistic approaches are taken as opposed to pinpointed care that centralizes an anomaly and seeks an immediate response or action.

We believe that this community-based or localized model of research can serve as a model for other communities. It serves as a dementia program research model that is scalable to other First Nations. The local community-based focus is viewed as a strength in improving future health projects that centralize community voices as having merit and being valid. As previously stated, the gathering of knowledge from communities is imperative when aiming to improve health services and supports to bridge the health gap between Indigenous and non-Indigenous peoples and is central to de-colonizing health care and services. One limitation of this study is the reach of representation of the Anishinaabe stories gathered, which are relevant only locally. Because of the scale of this study and the sample size, the stories should not be viewed as an overall community perspective on intergenerational programming. Further implementation projects are required to gain greater insight into multiple perspectives. Future facilitations must aim to achieve a wider community perspective, including those of caregivers to people with dementia and those with early dementia. Although the themes have arisen from a small sample, we do suggest that our careful attention to member checking, including the inclusion of a community advisory group in the analysis and review of the findings, add to the strength of the findings.

Conclusion

Exploring and fostering traditional roles of older adults in First Nation communities provides opportunities to promote healthy brain aging through meaningful intergenerational social engagements. Intergenerational approaches to brain aging align with Anishinaabe teachings, as relations amongst the generations are a prominent reflection of well-being. The outcome of this project demonstrates that there is a need to explore traditional roles and bridge the relational gap that too commonly present between the generations. Acknowledging the important connections between the generations paves a pathway of inclusion for the health and well-being of all generations to be wholistic. Community members note that concerns such as the presence of tradition, culture, and the ability to teach or share knowledge affects the way the mind ages, ultimately influencing the well-being of generations to follow.

Future facilitations pertaining to improving brain aging must recognize the impacts that intergenerational interactions will have on all the generations and the community as a whole. Ensuring the presence of communal voices when addressing health concerns in Indigenous communities creates cultural advances to health care that nurture the needs of the community. These approaches further develop a community’s ability to engage in self-determination and ultimately pave the path to fostering Indigenous ways of living and resilience to insistent Western perspectives of medicine. It is through the continued presence of communal voices in health research that change is sought. It is through these changes that Indigenous communities continue to thrive, heal, foster traditions and culture, and maintain balance with all relations, including the physical, mental, emotional, and spiritual self. Bridging the social gap between the generations through meaningful intergenerational social engagements nurtures the ways in which the Indigenous peoples of Turtle Island have lived for thousands of years. Empowering Indigenous communities to continue leading health research projects that are inclusive of all the generations ensures that the commonly expressed perspective of how Indigenous peoples once lived flourishes into the present tense of how Indigenous peoples are living.

Footnotes

We acknowledge the Anishnaabek people of Wiikwemkoong Unceded Territory as the leading voices in this project. We also thank the community advisory group who willingly provided support and guidance during all stages of this project and the staff at the Long Term Care/Home and Community Care Centre for their dedication to the project and for providing support during the interviews and focus group gatherings. We are also extremely grateful to Elder Rita Corbiere and Elder Phyllis Williams from Wiikwemkoong Unceded Territory for leading the translation of this project’s abstract in Anishinaabemowin. We appreciate the energy, time, teachings, and consultation that went into translating this work, and also recognize the local language speakers who provided additional support. In addition, we acknowledge the following as fundamental partners in the development of this project: Naandahwehtchigeh Gamig (Wiikwemkoong Health Centre), Waasa Naabin Community Youth Services Centre, Manitoulin Anishinaabek Research Review Committee, Wiikwemkoong Unceded Territory Band Council, Northern Ontario School of Medicine, and Laurentian University. This work was supported by the Canadian Institute of Health Research (Canadian Consortiumon Neurodegeneration in Aging grant number 37794, 2014 to KJ). Chi Miigwetch, wela’lin, thank you to all those who made this journey possible.

1 “Brain aging” is used frequently throughout this project as a substitution for “Alzheimer’s disease and related dementias”, the Western medical term that is commonly used to describe cognitive decline. A community report that gathered perspectives of dementia revealed that community members have expressed concern over medical terminology, including diagnostic terms such as “Alzheimer’s” or “dementia”, which do not have a direct translation into the language (Anishinaabemowin) (Pace, Jacklin, & Warry, Reference Pace, Jacklin, Warry, Hulko, Wilson and Balestrery2019). It is for this reason that this article will use the term “brain aging”, a term that resonates personally with many participating community members.

2 “Indigenous” refers to being native to the given area. For the purpose of this article, the term “Indigenous” represents the Aboriginal Peoples as being Indigenous to North America. The term is capitalized as a proper name for a people. (National Aboriginal Health Organization, 2011).

3 First Nation refers to the community in which First Nations peoples may live or that they belong to. Many communities have adopted this term as a replacement to the term “band” (National Aboriginal Health Organization, 2011).

4 Throughout this article, Elder is capitalized when indicating a proper title or signifying honor in the community. “Elder” is often used to describe Indigenous individuals who are culturally and spiritually inclined. These individuals have the teachings to pass on the collective wisdom of generations that have passed before their time (Dumont-Smith, Reference Dumont-Smith2002). The word is not capitalized when used to represent older generations or seniors (National Aboriginal Health Organization, 2011). The term “older adult” will be used to refer to participants who are over the age of 55.

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Figure 0

Table 1: Summary of participating community member count for focus groups and interviews

Figure 1

Figure 1: Word cloud presented to the combined focus group to describe older adult and youth focus group thoughts, ideas, and common themes