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. 2016 Apr 5;57(6):1011–1019. doi: 10.1093/geront/gnw059

United States Indigenous Populations and Dementia: Is There a Case for Culture-based Psychosocial Interventions?

Colette V Browne 1,*, Lana Sue Ka’opua 1, Lori L Jervis 2, Richard Alboroto 1, Meredith L Trockman 1
PMCID: PMC6281323  PMID: 27048710

Abstract

Dementia is an issue of increasing importance in indigenous populations in the United States. We begin by discussing what is known about dementia prevalence and elder family caregiving in American Indian, Alaska Native, and Native Hawaiian populations. We briefly highlight examples of culture-based programming developed to address a number of chronic diseases and conditions that disproportionately affect these communities. These programs have produced positive health outcomes in American Indian, Alaska Native, and Native Hawaiian populations and may have implications for research and practice in the dementia context of culture-based interventions. Evidence-based and culture-based psychosocial programming in dementia care for indigenous populations in the United States designed by the communities they intend to serve may offer elders and families the best potential for care that is accessible, respectful, and utilized.

Keywords: Dementia, Indigenous populations, Caregiving-informal, Culturally competent practice, Native older adults


As population aging continues to occupy national and international policy discussions, attention increasingly turns to the impact of the dementias on individuals, families, social and health care institutions, and society. Today, we better understand the pathology and progression of dementia, understand that dementia takes numerous forms, and, importantly, that care is provided predominantly by family caregivers with significant impact on their well-being (NIH, 2013/2014). Less is known about how dementia and family caregiving impact special populations and age cohorts. On an applied level, targeted research on neglected populations can help to treat dementias in populations where data are limited (i.e., racial/ethnic populations).

In this article, we discuss indigenous older adults in the United States—Alaska Native, American Indian, and Native Hawaiian. We outline what is presently known about dementia prevalence and dementia caregiving in these populations. We briefly turn to a discussion on culture-based programs and approaches for Native populations that have improved prevention and control of a number of chronic diseases and the enhancement of healthy behaviors that we suggest have implications for research and practice in the dementia context. Building on this, we advocate for the testing of culture-based dementia care approaches using similar approaches that have the potential for improving dementia care outcomes in Native older adult populations. Ultimately we hope to draw attention to the needs of Native elders, with our primary aim to advance ways in which services and programs for those with dementia and their family caregivers might incorporate culturally relevant strategies to improve their quality of life (QoL). For this article, Native older adults are defined chronologically as those older than 55 years, a definition in alignment with many Native communities (Hendrix, 2004; Saylor, Doucett, Smith, Easley, & Kanaqlak, 2004). National statistics often refer to old age as those 60 or 65 years of age (Administration on Community Living/Administration on Aging, 2016).

Background

Although most people hope to live long and healthy lives, advanced age remains the most significant risk factor for Alzheimer’s disease (AD), the most prevalent form of dementia (NIH, 2013/2014). The National Institute of Health (NIH) is committed to finding a cure (NIH, 2013/2014). In its absence, some researchers are currently turning to translational efforts in dementia care interventions aimed at promoting aged adult and family care (Gitlin, Marx, Stanley, & Hodgson, 2015; Napoles, Chadiha, Eversley, & Moreno-John, 2010). Today, an estimated 5.4 million Americans have a form of dementia. In addition to AD, other forms include vascular dementia, Lewy Body, and dementia from other neurological diseases such as Huntington’s Chorea and Parkinson’s diseases (NIH, 2013/2014; Plassman et al., 2007).

American Indian, Alaska Native, and Native Hawaiians are distinct populations with a shared history of forced colonization into the United States. Each population is rich in cultural diversity with individuals and communities influenced by their own histories and varied tribal and family affiliations, linguistic traditions, geographies (reservation, homestead, rural or urban dwelling), and care preferences that may fall at any point along a broad spectrum of engagement with traditional Native and/or majority American cultures (Mokuau, 2011; Verney, 2015). Historical trauma, a result of this forced colonization, has been linked to present-day heath disparities in Native populations (Sotero, 2006). Research has established strong links between various psychosocial stressors (e.g., unemployment stress, social status, perceived racism) and numerous health problems and behaviors common in racial/ethnic populations including Native populations (Davis, Liu, Quarells, & Din-Dzietharn, 2005; Kaholokula, Iwane, & Nacapoy, 2010). Studies document the high prevalence of Native peoples with type 2 diabetes, hypertension, substance abuse, obesity, and heart disease compared with the majority culture (Cho et al., 2015; Cook, Grothaus, Gutierrez, Kehoe, & Valentin, 2010; Ka’opua, Braun, Browne, Mokuau, & Park, 2011), and other studies point to these as risk factors for dementia (Kivipelto et al., 2005; Mayeda et al., 2014). Although Native mortality rates remain lower than most other Americans, more Native older adults now live into old age, and advanced age remains the greatest risk for AD (Alzheimer’s Association, 2015). Overall, data document the persistence of high health risks in Native communities that increase their risk for poor cognitive function and dementia (Jervis, Cullum, & Manson, 2013).

Indigenous Populations in the United States

American Indian/Alaska Native Elders

The 2010 Census identified 5.2 million people as American Indian/Alaska Native alone or in combination with one or more races, of which 266,000 are older persons (65+; U.S. Census, 2010a). This number of American Indian and Alaska Native older adults is projected to grow to more than 900,000 by 2050, and nearly 20% will be in their mid-80s (Vincent & Velkoff, 2010). American Indians comprise more than 566 federally recognized and more than 100 state recognized tribes and share similarities as well as wide differences in language, geography, cultural values, history, and traditions (Bureau of Indian Affairs, 2015). Alaska Natives, the indigenous peoples of Alaska, are also comprised of diverse groups, including the Inupiat, Yupik, Aleut, Eyak, Tlingit, Haida, Tsimshian, and a number of Northern Athabaskan cultures. There are 256 federally recognized villages in Alaska, which comprises more than half of the Native communities in the United States (Bureau of Indian Affairs, 2015). Similar to American Indian and Native Hawaiians, the Alaska Native population was decimated after European (Russian) contact due to infectious diseases. With the exception of the Tsimshian and the Metlakatla Indian Community in southeastern Alaska, Alaska Natives have no reservations but maintain some control over traditional ancestral lands (Jones, 1981). Data from the Indian Health Service are primarily based on American Indians who reside on reservations, although the majority currently resides in urban areas (U.S. Census Bureau, 2010b). Progress has been made in targeting public health interventions toward Native communities, but data continue to document American Indian/Alaska Native communities’ high rates of diabetes, alcohol, and substance abuse with disproportionate effects on their physical and emotional health and life and mortality (Cho et al., 2015; Espey et al., 2014).

Native Hawaiians

The 2010U.S. Census enumerated 440,000 Americans (0.1% of the total U.S. population) who are of full or part-Hawaiian ethnicity, about 60% of who reside in the State of Hawai’i (U.S. Census, 2010a). Knowledge on Native Hawaiians who reside in North America and Alaska is limited (Kamehameha Schools, 2014). Native Hawaiians are the descendants of the aboriginal people inhabiting the Hawaiian archipelago prior to western contact in 1778 and exercised sovereign governance prior to the 1892 overthrown of the Hawaiian Kingdom by the United States (Mokuau, 2011). Data from the State of Hawai’i —home to 60% of Native Hawaiians in the United States—revealed that they face similar health challenges to other Native populations. Native Hawaiian older adults have the highest prevalence and incidence of obesity and diabetes when compared with the dominant majority population in the United States, are more likely to report behavioral health risks, such as smoking, live within/below 100%–199% of the poverty level, and find cost a barrier to seeking care when compared with the State’s other major ethnic groups of the same age—Americans of Chinese, Japanese, and Filipino ancestry (Ka’opua et al., 2011).

Indigenous Populations in the United States and Dementia Prevalence

Over a decade ago, Jervis and Manson (2002) described the limited field of research in dementia assessment, diagnosis, treatment, and cultural understandings of dementia in Native elders and their families. Although some studies have since been conducted in these areas, our knowledge base remains limited. No national prevalence data for dementia exist for Native elders. The Alzheimer’s Association (2015), for example, does not disaggregate disease prevalence for ethnic/racial categories included under the terms of American Indian/Alaska Natives or Native Hawaiians. Available population data may underestimate the risk and prevalence of dementia in American Indian, Alaska Native, and Native Hawaiian populations, in part due to their markedly lower life expectancy compared with Whites (Espey et al., 2014; Garrett, Baldridge, Benson, Crowder, & Aldrich, 2015; Ka’opua et al., 2011). As advanced age remains the primary risk factor for AD, this earlier mortality potentially removes some of their members from facing the risk of AD. Knowledge of the impact of dementia on Native populations and their families is limited, but evidence from the studies that do exist suggests that the problem of dementia is a real one (Braun & Browne, 1998; Hendrie et al., 1993). In fact, the extant research suggests that in some cases, American Indians may even have notably high prevalence of dementia and/or cognitive impairment (Jervis, 2013; Jervis, Beals, Fickenscher, & Arciniegas, 2007). Prevalence data are unavailable for Native Hawaiians due to limited research. However, one recent study of dementia prevalence in a disaggregated Asian and Pacific Islander adult population hospitalized in Hawai`i found that at time of hospital discharge, Native Hawaiian adults with a dementia diagnosis tended to be younger than similarly diagnosed adults of non-Hawaiian ethnicities (Sentell et al., 2014). Further research will help to better understand the risks of early age onset of dementia for Native Hawaiians.

Dementia and Family Caregiving

With the current absence of a cure for the dementias, researchers hope to promote elder and family care by testing and translating psychosocial dementia care interventions from academic settings to the community. Nonetheless, and despite mounting evidence of racial/ethnic differences in family caregiver experiences, research on culturally responsive caregiver interventions that address dementia care remains limited (Napoles et al., 2010). With few exceptions, family caregiver research has overlooked American Indians, Alaska Natives, and Native Hawaiians, even though the extended family has been found to be the primary—and sometimes the sole—provider of care to dependent older adults in rural and reservation settings (Goins et al., 2011; Hennessy & John, 1996).

American Indian/Alaska Native Caregiving

As noted by Goins and colleagues (2011), much of the research on caregiving, including that focused on American Indians, has centered on stress and burden (Henderson, 2009; Hennessey & John, 1996; Korn et al., 2009; McGuire, Okoro, Goins, & Anderson, 2008; Strong, 1984). Spencer, Goins, Henderson, Wen, and Goldberg (2013) explored the influence of caregiving on the health-related QoL among American Indians enrolled in the Education and Research towards Health (EARTH) study. They compared the QoL of American Indian non-caregivers and American Indian caregivers (person on whom another adult relies on for personal care) by types, either caregivers of adults with unspecified needs (CAU) and caregivers of an adult with mental and/or physical difficulties (CAD). Non-caregivers and CAU reported significantly better mental and physical health than their counterparts. The researchers recommended more detailed measures to inform design/delivery of effective interventions in tribal communities’ caregiving. Caring for a person with dementia involves attention to social, mental, and physical limitations that are progressive, often resulting in increased distress for the person rendering care.

Relatively little research has explored caregiving as a positive experience, but researchers have noted a number of positive cultural aspects, values, and norms around caregiving in American Indian/Alaska Native communities: centrality of the family, family obligation for/valuation of familial caregiving, and a cultural ethos of respect for elders (Goins et al., 2011; Hennessy & John, 1996; Jervis, Boland, & Fickenscher, 2010). Strong’s study (1984) of American Indians in the Pacific Northwest noted positive dynamics around elder caregiving in these families. Jervis and colleagues (2010) explored the negative and positive aspects of providing care to older adults among 19 northern plains American Indian family members. These caregivers described low levels of burden and high levels of reward, attributable to cultural attitudes toward older adults and caregiving, collective care provision, strong reciprocal relationships with elders, enjoyment of elders, and relatively low levels of care provision. Caregiving manifested as part of a complex exchange of assistance rather than a unidirectional provision of assistance from the family member to the aged adult. That caregiving emerged as such an overwhelmingly positive experience in a community faced with poverty, alcohol disorders, trauma, and cultural traumatization is testimony to the important roles that elders often continue to play in these communities. Nonetheless, poverty and lack of long-term care services in most reservations and rural areas were noted by others to present additional challenges to providing needed care (Garrett & McGuire, 2008; Goins, Bogart, & Roubideaux, 2010). Finally, Henderson and Henderson (2002) used a case study method to understand the cultural construction of memory loss and confusion in American Indians. Among their findings was that the family’s view of dementia was attributed to cultural and spiritual interpretations; specifically, the dementia symptoms were the older adult’s “window into the unknown,” ability to communicate with the “other side” (i.e., the supernatural world inhabited by the spirits of the dead), and connection to the spiritual realm. Studies on Native populations in Canada have also identified spirituality as a key factor in positive views on memory loss in later life (Hulko et al., 2010).

Alaska Native service providers and researchers are identifying and documenting best and promising practices for integration of cultural norms and traditions into long-term dementia care (Lewis, 2015a, 2015b; Lewis & Thibedeau, 2015). For example, the Denali Center has learned that diverse cultural values and spirituality often are retained by Alaska Native older adults with dementia; thus, providers place high importance on assessment of elder residents’ cultural heritage and on honoring preferences for care, communication, and social engagement (Lewis, 2015b; Lewis & Thibedeau, 2015). At the Inaugural National Conference on Alzheimer’s Disease/Dementia in Native American Communities (2015) sponsored by the Banner Alzheimer Institute in Arizona, Thibedeau (Denakke’) and Lewis (Aleut) (2015) detailed positive outcomes derived from serving older adults their favorite comfort foods (e.g., moose, berries), providing traditional Native music that “opens memories of good times,” facilitating elders’ access to familiar ways of gathering with other community members (e.g., Athabaskan fiddle festivals, potlatches), and the importance of respecting older adults’ cultural mores for physical modesty and humility. The documentation of best and promising practices provides a foundation for future research inquiries. Given that some Alaska Natives live in remote locations where they are reliant on infrequent commuter planes for supplies and transport to medical facilities, it is likely that they experience unique difficulties with regards to service access and availability (Lewis, 2015a).

Native Hawaiian Caregiving

Research on Native Hawaiian dementia caregiving is also limited. From within the Native Hawaiian worldview, kūpuna (elders) are respected, and health is a function of harmony in the three interrelated domains of the physical world, social relations, and spiritual life. This triad of relations is reflected in the practice of ho’oponopono (family learning and discussion with prayer). Ho’oponopono was used as a complement to herbal treatments and to identify interpersonal concerns and conflicts that might interfere with the treatment of a person’s physical, spiritual, and mental distress (Mokuau, 2011). A recent study of aging and care preferences in Native Hawaiian elders and caregivers found similar aging and caregiver concerns compared with that of the majority culture caregivers (i.e., high costs of care) as well as concerns grounded in Hawaiian culture. Culturally grounded themes included great respect and even deference for the aging, a designated role for older adults as cultural preservers, perceived discrimination and a subsequent mistrust of some service providers, and care preferences that reflect Native values and practices (Browne, Mokuau, Ka’opua, Kim, & Braun, 2014).

Native Elders and Culture-based Health Interventions

A growing body of research identifies racial, ethnic, and cultural group variations in views of health and disease that differ compared with the European American population in symptom manifestation and diagnosis and that influence preferred helping seeking and treatments (Shaw, Huebner, Armin, Orzech, & Vivian, 2009). Increasing numbers of researchers and community activists now argue for psychosocial interventions to take into account indigenous cultural values, beliefs, traditions, and histories of oppression, if they are to reach better health, improved access to care, lower levels of caregiver burden, and other desired outcomes (Kaholokula et al., 2010; Mokuau, 2011). Culturally tailored strategies are built from or adapt to the values, beliefs, traditions, and histories that result in how a group defines a health issue, group preferences, and how the group accesses certain services over others (Braun, Kim, Ka’opua, Mokuau, & Browne, 2015; Ka’opua, et al., 2011).

To date, research has produced an extensive body of Native health research on culture-based programming in cancer, smoking cessation, diabetes, and heart disease (Croff, Rieckmann, & Spence, 2014; Daley et al., 2010; Dickerson, Robichaud, Teruya, Nagaran, & Hser, 2012; Kaholokula, Braun, Santos, & Chang, 2007; Langwell, Keene, Zullo, & Ogu, 2014; Mau, et al., 2010; Mokuau, Braun, & Daniggelis, 2012; Patchell & Edwards, 2014). Many of these studies adhere to community-based participatory research (CBPR) and tribal participatory research (TPR) approaches to implement their research. The former emphasizes respectful attitudes to different approaches to research and knowledge development (Israel, Schulz, Parker, & Becker, 2001), whereas the latter has an additional research focus on honoring Native knowledge and history and acknowledging Native sovereignty (NCAI, 2012). Results are producing good health outcomes and indicate the importance of culture in customizing evidence-based models and interventions based on diverse values, traditions, histories, and present-day realities of the particular tribe or group. Data from culturally tailored interventions grounded in the value preferences of the Native community intended for intervention suggest that they are well received, appreciated, and effective in approximating desired health outcomes.

We briefly provide just a few examples to illustrate this work that may provide guidance in the design and testing of dementia care interventions. A review of programs that have successfully combated substance abuse and smoking in American Indian/Alaska Natives has been built on these principles: (a) full engagement of the family and community, (b) respectful and knowledgeable care by providers, (c) the importance of spirituality, (d) a value on noninterference by professionals unless asked, and (e) implicit specific cultural practices and culturally grounded rituals of that particular group and the adaption of western approaches (Croff et al., 2014; Daley et al., 2010; Dickerson et al., 2012). Culturally tailored programs have decreased the rate of colorectal cancer among Alaska Natives by training rural midlevel practitioners to provide flexible sigmoidoscopy, providing cultural education to providers, linking to other cultural resources, and emphasizing community-based leadership of the tribe (Redwood et al., 2009). The approach of the Tribal Participatory Chronic Care Model (TP-CCM) used tribal members to advise and adapt the traditional Chronic Care Model to foster better relationships between tribal entities and the public health care system to improve cultural competency and health care delivery at multiple levels (Langwell et al., 2014).

Research with Native Hawaiians has also identified numerous positive health outcomes from culturally based programming that are built on Native Hawaiian values that place family and community relations as important. To build a productive relationship with Native Hawaiian patients, providers in a heart health intervention adapted ideas from a patient-centered care model. Cook and colleagues (2010) made time for ho’olauna (social interaction) to establish trust and subsequently disseminated print materials with culturally specific disease management information to patients and families. Active involvement of one or more family members was key to supporting patients in indigenous diabetes and breast cancer programs (Ka’opua et al., 2011; Mau et al., 2010; Mokuau et al., 2012). Expanding family/social networks was advocated for by Native Hawaiian communities and became a successful key feature of these interventions. Interactive group education based on social learning approaches was tailored for sociocultural relevance to Native Hawaiians living with HIV; educators provided a welcoming chant (oli) and facilitated discussions around social and health issues, that is, protecting self and family from HIV-related stigma (Ka’opua et al., 2014).

Is There a Case for Culture-based Psychosocial Interventions in Dementia Care?

Evidence-based psychosocial interventions with persons with dementia and their family caregivers include behavioral therapy, caregiver assessments, education, social service programs and supports, and environmental modifications. Modifications to these and other treatments are now recommended with racial/ethnic populations to assure both quality of care and cultural relevance (Gitlin et al., 2015; Lewis, 2015a, 2015b). In Napoles and colleagues’ (2010) well-reasoned argument for developing culturally responsive caregiver interventions with racial/ethnic elders and families, they asked the question “Are we there yet?”. In dementia care for native elders, the answer is a resounding “no.”

The continued persistence of social and health disparities documented in indigenous populations in the United States calls for a range of approaches that extend evidence-based Eurocentric/western strategies to those that are culturally based in order to assure health equity and promote quality dementia care. Programmatic components from culture-based approaches discussed here may similarly guide the development of interventions in the Native dementia context and deserve more research attention. As a start, the testing of culture-based psychosocial dementia care interventions can look to CBPR (Israel et al., 2001) and TPR approaches (Fisher & Ball, 2002, 2003; LaVeaux & Christopher, 2009; NCAI, 2012) and consider the following culturally respectful research principals to developing or altering care:

  1. Incorporate indigenous cultural values and traditional ways, knowledge of history, and the impact of discrimination and marginalization on service design and among those who provide it. To develop effective interventions for/with communities and individuals, it is crucial to assess cultural orientation, with attention to affiliations with Native communities and kinship networks, value preferences on holistic and spiritual well-being, and social norms related to privacy, respect, humility, and visual-spatial preferences (Mokuau, 2011; Verney, 2015). Thus, values around family centeredness and the expectation that all family members will participate in caregiving responsibilities may require new family caregiving models that extend the standard approach with its focus on adults who are related by “blood” or marriage in education and support programs. The inclusion of children and so-called “fictive kin” in these programs is particularly important in Native communities, as caregiving has been shown to take place in configurations that deviate from a dyadic adult (often spousal) model. Native and non-Native staff knowledgeable of history and trained in culturally grounded practices can help build trust and facilitate health-related discussions (Redwood et al., 2009). This attention to culture does not negate the increased need for financial resources needed by many Native families to help them provide the necessary care to persons with dementia (Braun et al., 2015; Browne et al., 2014; Jervis, 2013; Jervis, Boland & Fickenscher, 2010).

    In this article, we highlighted only a few of the culturally congruent programs and approaches now being used with Native populations with promising health results that we believe have implications in dementia care research. However, equally important is attention to the ways in which the effects of colonization, historical trauma, discrimination, loss of traditional healthy lifestyles, lack of experience with easily accessible health care, and devaluation of cultural values may have on relationship building, communication, and ultimately the testing of new approaches (Braun et al., 2015; Braveheart,1998; Kaholokula et al., 2010). LaVeaux and Christopher (2009) suggest a number of additional CBPR principals specific to American Indian and Alaska Native populations that can be helpful here, such as acknowledging the group’s historical experience in the United States and their experience with research, recognizing and honoring tribal sovereignty and research protocols, and respecting and utilizing indigenous ways of knowing.

  2. Provide face-to-face elder and family education and other approaches with group interaction. This approach emphasizes the value of face-to-face communication and education approaches with elders and families and also the importance of identifying and understanding preferred communication and educational approaches. Through indigenous defined educational and training formats, we can better assure that those who work with Native persons with dementia and their family caregivers do so with respect, humility, cultural safety, and care. As always, attention must be paid to the wide diversity that exists within Native populations in customs, communication styles and preferences, geography, socioeconomic status, and many other factors. As but one example, Native researchers targeted Native Hawaiian women with cancer with a family education program that resulted in more positive health outcomes when all members of the family were included in the health education intervention (Mokuau et al., 2012). Linguistic competencies and the use of technology will also be important as ways to counter the geographical challenges in rural and island communities (Lewis, 2015a).

  3. Build on community-based initiatives and preferences for both design and dissemination efforts together with evidence-based practices. Across Native populations and disease conditions, collaborative constituent strategies (e.g., Community Advisory Boards) have been successfully designed that invite participation of engaged Native research and community members, respect bidirectional learning opportunities, and follow Native research protocols. Health education using Native formats has facilitated success in achieving positive health outcomes in diabetes care, chronic disease self-management, obesity prevention, smoking cessation, substance abuse prevention, and breast cancer treatment. The approach of the TP-CCM discussed by Langwell and colleagues (2014) is one example of how community engagement together with tribal leadership was successful in delivering culturally tailored education materials to members of the Shoshone Tribe. This approach and others may be seen as models for dementia care community initiatives. A requisite of Advisory Councils for dementia care, then, should include Native community members who know best the concerns faced by persons with dementia and their family caregivers. Partnerships between universities and Native communities working respectfully together may best address issues of program sustainability with economic and political leverage combined with data to guide and support their efforts (Small-Rodriguez, 2012).

Future Directions for Research

Finally, we suggest a number of research directions that we believe are needed to advocate for culture-based dementia care interventions in Native populations. First, we urgently need larger scale population-based prevalence studies that document the status of dementia in the nations’ diverse and underserved Native communities. Second, accurate prevalence data require validated dementia measures for Native populations that do not presently exist. Third, research strategies to measure and account for historical influences and cohort variations in Native populations are needed to avoid simplifications and stereotypes about homogeneity, care preferences, and utilization patterns, and will benefit from a better understanding of the effects of stress, discrimination, and historical trauma on health and care preference/use within a life course and cohort framework (Braveheart, 1998; Browne, Mokuau, & Braun, 2009; Hebert et al., 2015). CBPR and TPR offer approaches that are amenable to the testing of culture-based solutions. Finally, an integrated theoretical roadmap for understanding dementia care in Native populations will assist in hypothesis development. Research on testing culture-based interventions could examine a new conceptual framework drawing from those presently used to understand social and health disparities; to name a few, minority stress theory (Meyer, 2003), historical trauma (Braveheart, 1998), life course (Elder, 1994), and cultural explanatory model (Hinton, Franz, Yeo, & Levkoff, 2005).

Conclusion

Dementia is an issue of increasing importance in indigenous communities in the United States. A growing body of research on culture-based programming in other areas of health has produced positive health outcomes and may help to inform work needed in dementia care. As the family continues to be the major source of care for most indigenous older adults with dementia, there is a heightened need to test psychosocial dementia care interventions with Native persons with dementia and family caregivers. CBPR and TPR approaches that incorporate cultural values and traditions, knowledge of the effects of historical trauma and other challenges (i.e., financial), and those that are respectful of Native sovereignty and research protocols offer a research strategy for the testing of interventions aimed at promoting elder and family QoL. In the absence of what is most needed—the prevention and cure of dementia—the best potential for providing psychosocial dementia care to Native older adults and families is care that is accessible, affordable, respectful, community based, with attention provided to locating dementia care in the context of diverse Native cultures.

Funding

Hā Kūpuna National Resource Center for Native Hawaiian Elders (C. Browne, PI) is supported, in part, by the U.S. Administration on Aging, Department of Health and Human Services, Washington, DC (90OI0007/01).

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