“Making Sense of a Disease That Makes No Sense”: Understanding Alzheimer’s Disease and Related Disorders Among Caregivers and Providers Within Alaska Native Communities

Abstract

Background and Objectives

With the rate of Alzheimer’s disease and related dementias (ADRD) increasing among Alaska Indian/Alaska Native (AI/AN) people, the Alaska Native Health system is ill-prepared to meet the challenges associated with the growing population at risk of ADRD. The high cost of care, inadequate training of health care providers, and lack of supportive services for caregivers are especially concerning.

Research Design and Methods

Interviews were conducted with 22 AN caregivers for ANs with ADRD and 12 ANs and non-Native health care providers in communities across Alaska. Interviews lasted approximately 60 min and were transcribed verbatim. We employed directed content analysis to examine the major agreements and disagreements between the participants’ understandings of ADRD in each of the domains of Kleinman’s Explanatory Model of Illness.

Results

Caregivers and health care providers expressed concerns about the lack of understanding, resources, and awareness of ADRD among ANs in rural and urban communities. Both caregivers and providers recognized the need to obtain an early diagnosis, blend Western and traditional medicines, promote lifestyle and dietary changes, and foster training for caregivers. Health care providers acknowledged their limited exposure to AN understanding of ADRD and wish to receive culturally relevant training to better serve AN.

Discussion and Implications

As the older AN adult population grows, the need for culturally responsive training and support services will continue to increase. We recommend establishing rural outreach and support groups for caregivers, developing an understanding of how ANs view ADRD to train and educate health care providers, and implement screening early for memory loss during routine medical examinations.

Alzheimer’s disease and related dementias (ADRD) are a significant and growing health concern in American Indian/Alaska Native (AI/AN) communities. Between 1974 and 2016, the AI/AN population aged 65 years and older nearly tripled, from 4.8% to 14.1% of the total AI/AN population (Garrett et al., 2015). While this demographic shift reflects a marked increase in life expectancy for AI/ANs, it also heralds a dramatic surge in ADRD which is fueled by morbidities (Henderson, 2015; Henderson & Henderson, 2002) including chronic heart disease, diabetes, and hypertension (Mayeda et al., 2016).

Limited research has focused on caregivers’ understandings of ADRD among older AI/ANs and their families (Jervis & Manson, 2002); indeed, no ADRD-related research to date has focused specifically on caregivers of ANs (Browne et al., 2016; Jervis & Manson, 2002). To inform our understanding of how people experience ADRD, we need to be able to understand their cultural backgrounds (Roche et al., 2020), which can be informed by Kleinman’s Explanatory Model of Illness (EMI; Kleinman et al., 1978). Insights into caregiver and providers’ racial and cultural perspectives promise to assist in understanding AN beliefs and values that can guide treatment, and, in turn, enable ANs to better comprehend and access early, critical stages of treatment, when they have the most benefit and impact on ADRD. Obtaining a better understanding of AN cultural beliefs and values toward ADRD can assist providers to integrate these values into services and treatments, demonstrate cultural humility and respect, and help ANs feel their values and beliefs are respected, improving trust and adherence to health care services and treatments. Toward this end, we examine similarities and differences between AN and non-AN caregivers and providers’ respective understanding of ADRD among ANs and subsequent processes of care.

The Current Landscape

Given the small population sizes and lack of literature on AI/AN and ADRD, these populations have been combined in past and current studies, but as research continues and population sizes increase, these distinct cultural groups will be separated. Given the paucity of studies on ADRD among AI/AN, they tend to be lumped together in the background literature. AI and AN views of the aging process may delay or even prevent the identification and treatment of ADRD among older adults and their family members (Browne et al., 2016; Henderson & Traphagan, 2005; Jervis et al., 2006). Symptoms of ADRD are not necessarily viewed as a disease or illness but are instead often considered a normal consequence of aging (Garrett et al., 2015). A common perspective on aging among AI/AN people is that a person begins and ends his or her life as a child (Henderson, 2015; Henderson & Henderson, 2002). Some tribes see the mental confusion associated with dementia as a natural part of the dying process (Jervis & Manson, 2002). As a result, individuals who exhibit symptoms of ADRD may not seek health or ancillary services, and their caregivers may not be particularly concerned by such symptoms (Dilworth-Anderson & Gibson, 2002). The resulting misalignments between lay and biomedical explanatory models—which guide assumptions about cause, associated risk, relevant symptoms, treatment priorities, and management—impede help-seeking; frustrate communication among patients, caregivers, and providers; undermine treatment adherence; and contribute to poor treatment outcomes, disorientation, and diminished ability to understand and communicate effectively (Alzheimer’s Association, 2015; Downs et al., 2006; Kirmayer & Bhugra, 2009).

Arthur Kleinman, psychiatrist and anthropologist, introduced the EMI to organize patients’ and health care providers’ diverse conceptualizations of the nature of the illness, including cause and its treatment (Kleinman & Benson, 2006; Kleinman et al., 1978). Faced with an illness or a disease, a patient or family may try to explain what happened, why it happened, and what to do about it. The ensuing illness narratives can be systematically elicited in response to Kleinman’s EMI questions, yielding their Explanatory Model (Helman, 1981). Kleinman asserted that exploring illness narrative promotes healing by acknowledging patient perspectives, faulted biomedical limitations in this regard, and advocated that disease needs to be “re-conceptualized” more broadly, and understood from the perspective of patients’ experiences (Barnitt, 1999).

The EMI has been widely applied to a range of diseases and disorders, including diabetes, chronic heart disease, and dementia (Cohen et al., 1994; Kirmayer & Bhugra, 2009; Lynch & Medin, 2006; McCabe & Priebe, 2004), but not ADRD in AN communities. In the study by McCabe and Priebe (2004), Whites cited biological causes more frequently than the three non-White groups, who cited supernatural causes. When biological and social causes were compared, Whites cited biological causes more frequently than African Caribbean (McCabe & Priebe, 2004). Lynch and Medin (2006) found that groups with extensive exposure to Western medicine, compared to those with less exposure, mentioned other interactions that did not interact with Western illness models, specifically psychosocial causes of illness. Kirmayer and Bhugra (2009) discuss the biomedical concept of disease, the patient’s subjective experience of illness, and the social meanings of sickness, which are based on different explanatory models, all of which interact with each other.

Differences exist between caregivers and their understandings of illness and disease, as well as their experiences with physical and mental health outcomes related to caregiving, which may be directly influenced by cultural differences in beliefs, values, and attitudes toward health and caregiving (Liu et al., 2020). While culture plays a role in understanding disease and illness, it also affects coping styles (Yuan et al., 2020) and how caregivers understand their experiences and those of their family members with dementia. Given caregivers typically serve as the bridge between the person with dementia and their provider, it is important to understand their experiences to ensure they understand ADRD treatments and education and training opportunities.

Cultural, or explanatory, models can serve as guides to diagnosis, a basis for empathic understanding, encourage the development of cultural humility, and serve as a resource for effective interventions. In this study, we were particularly interested in articulating the explanatory models of ADRD held by AN caregivers and health care providers and exploring the differences and similarities in their understanding of ADRD.

Design and Methods

Interview Format and Content

Guided by Kleinman’s EMI framework domains, we asked open-ended questions to gain insight into the cultural understandings of ADRD among AN caregivers of ANs suffering from ADRD and among AN as well as non-AN health care professionals who treated ANs with ADRD.

Recruitment

We recruited a purposive sample of AN caregivers of ANs suffering from ADRD (subjective and/or clinical diagnosis) as well as AN and non-AN health care providers with direct knowledge of and experience in treating ADRD in this special population. Participant recruitment occurred through referrals from our research partners, namely the Alzheimer’s Resource of Alaska, Aleutian Pribilof Islands Association, Bristol Bay Area Health Corporation, and Fairbanks Native Association. The caregiver inclusion criteria were (a) self-identified as AN, (b) self-identify as a primary caregiver for AN with suspected or diagnosed ADRD, (c) English speaking, (d) able to provide consent, and (e) agree to audio-recording the interview. The health care provider inclusion criteria were (a) currently living and practicing in Alaska, (b) currently providing or having provided care for ANs with ADRD, (c) able to provide consent, and (d) agree to audio-recording the interview.

Demographics

We interviewed 21 AN caregivers (13 in-person and eight by phone) from across the State (Table 1). Participants were from the large urban centers of Anchorage and Fairbanks, as well as the smaller rural communities Dillingham, Galena, Huslia, Levelock, Manokotak, Mountain Village, and Unalaska, with populations ranging from 200 to 1,600. They averaged 51 years of age; 72% of them identified as children of an index person with dementia. Twenty-two percent reported having a high school diploma; 32% attended some college. At the time of the interview, these individuals had provided care for an average of 7 years; 21% reported being the sole caregiver.

Table 1.

Alaska Native Caregiver Demographics

Providing care for
Spouse	60%
Parent	10%
Grandparent	25%
Other	5%
Rural residence	38%
Alaska Native	100%
Gender
Female	86%
Male	14%
Mean age	53 years old
Education
Some high school	10%
High school graduate	19%
Some college	29%
College graduate	29%
Graduate school	14%

Fifteen health care providers working in Anchorage, Dillingham, Galena, Fairbanks, and Unalaska were interviewed (10 in-person and five by phone; Table 2). They represented all levels of training, ranging from community health aides to neurologists. Their mean age was 54 years old. They had provided health care in Alaska for an average of 17 years and averaged 14 years providing care to ANs with ADRD (see Table 1 for caregiver demographics and Table 2 for provider demographics).

Table 2.

Provider Demographics

Gender
Female	83%
Male	17%
Mean age	55 years old
Mean years living in a community	25
Mean years treating ADRD	15
Rural residence	33%
Profession
Nurse	33%
Social service provider	33%
Physician (MD)	25%
Community health aide	9%

Note: ADRD = Alzheimer’s disease and related dementias.

Data Analysis

All interviews were audio-recorded and transcribed verbatim. Interview text was uploaded to NVivo (2018), a qualitative data analysis software program, and we conducted a directed content analysis (Hsieh & Shannon, 2005), which enables the researchers to validate or extend a theoretical framework or theory (Hsieh & Shannon, 2005; Kibiswa, 2019). First, the lead author (J. P. Lewis) obtained a sense of the data through multiple readings of the transcripts. Second, using predetermined codes based on Kleinman’s EMI domains, the transcripts were coded by the first author. The first draft of the codebook was discussed with the coauthors, who refined the themes and subthemes related to agreements and disagreements between the explanatory models. Third, the lead author identified overarching themes that characterized participants’ understandings of ADRD across each of the domains of Kleinman’s EMI (Kleinman et al., 1978). Using this approach, the data were organized into common themes for comparisons. Directed content analysis enabled the authors to explore a phenomenon and provide insight into descriptive knowledge (Assarroudi et al., 2018) of dementia among ANs in rural and urban settings.

Results

Our analyses compared similarities and differences between caregivers’ and providers’ understanding of ADRD among ANs in terms of Kleinman’s EMI domains: When did ADRD start? What are the problems of ADRD? What caused ADRD? What are the fears about ADRD? What type of treatment(s) are available? Tables 3 and 4 list Kleinman’s EMI domains and the respective study themes with illustrative quotes for the caregivers and health care providers.

Table 3.

EMI Caregiver Codes With Supporting Quotes

EMI codes	Caregiver code	Quote
ADRD onset	Growing old	“He kept telling me he thought he might have Alzheimer’s, but I kept telling him it was just age.”
ADRD causes	Part of aging	“I do not even know what causes it. It is just part of growing old.”
ADRD problems	Lack of resources	“They do not have the proper resources to address dementia.”
ADRD treatments	Traditional healing	“She believed in teas, she had things like turmeric and different spices, as well as aromatherapy.”
ADRD fears	Loss of elders	“When this disease attacks our Elders, I feel like it takes every encyclopedia that’s ever been written and essentially burns it up.”

Note: ADRD = Alzheimer’s disease and related dementias; EMI = Explanatory Model of Illness.

Table 4.

EMI Provider Codes With Supporting Quotes

EMI codes	Provider code	Quote
ADRD onset	Aging-related disease	“I would say it’s natural degenerative processes and the losses our bodies experience as we live longer.”
ADRD causes	Health behaviors	“People who have comorbidities such as high blood pressure, cholesterol, and diabetes and when they do not follow up with their care, they can experience dementia.”
ADRD problems	Lack of resources	“The lack of resources and supports. There are people in the communities that have dementia and have no support or anyone who understands them.”
ADRD treatments	Western treatments	“We are very close to having effective treatments for Alzheimer’s Disease and this will change our approach to dementias.”
ADRD course	Difficult to determine	“It’s difficult to determine the course of dementia in AN because it’s cultural.”

Note: ADRD = Alzheimer’s disease and related dementias; AN = Alaska Native; EMI = Explanatory Model of Illness.

Caregivers

When did ADRD start?

Caregivers noticed subtle behavioral changes in their older family members, which they attributed largely to normal aging. Several caregivers observed behavioral changes that affected activities in the home or community but were not especially concerned (Table 5, C1). Attributing behavioral and cognitive changes to normal aging, all caregivers in this study were seldom able to identify the critical event that resulted in them suspecting something was wrong with their family member and scheduling an appointment with a health care provider. The caregiver attributed behavioral and cognitive changes to normal aging, so they were seldom able to identify the critical event that resulted in them suspecting cognitive changes (Table 5, C2).

Table 5.

Illustrative Quotes of Participants

Caregivers (C)	Providers (P)	Caregiver/Provider (CP) comparisons
C1: “I just started to notice over months’ time that things were changing with her. She couldn’t remember where she put things. And her logic in discussions was not right. It was changing.” C2: “She was never diagnosed when her behaviors started changing. I noticed her new behaviors were not really normal, and I knew something was off there, so I called the doctor.” C3: “Maybe drinking, drugs, alcohol. Elders tell me they drank when they were young and maybe that had something to do with it.” C4: “I would think if they weren’t physically active. They’re just sitting there and not talking or visiting too would affect dementia.” C5: “I think trauma and constantly being on edge all of the time.” C6: “I do not think there is a clear yes or no answer, but a part of old age.” C7: “What troubles me the most is that I am trying to make sense of the disease that has no explanation and it’s something that you cannot make sense of.” C8: “Some days she wakes up in a good mood and other days, she’s not in a very good mood and it’s usually when she starts getting sick, and she starts to see people or things during the day that she hasn’t done before.” C9: “They just stay away. And that’s the first thing they do, when a family member gets dementia. The other family, they find out about it and stay away. Because why stick around because she doesn’t remember them.” C10: “It was an odd conversation because I’m used to always being the daughter and taking direction from him. The roles flipped, and I am telling him what to do.” C11: “A lot of people are dealing with dementia and do not even know it. There needs to be more awareness.” C12: “It was frustrating for me they didn’t have the training and there should be a resource, or checklist, on what to expect when you are taking care of your family member.” C13: “I tried to explain it to my family when he was first diagnosed with it. They’re really good at denying stuff. It’s like this is not going to go away. This is not going to get better. This is what we’re facing. And I’m going to need your help, but nobody showed up to help out.” C14: “I’d like to have her [health care provider] review the rest of his health other than the Alzheimer’s to make sure he’s up to date with the medications he’s taking and talk about other issues that have been bothering him [husband].” C15: “I had him going to a naturopath, but then just for different supplements and things and different things that help, natural things to help him calm down.” C16: “We found that music soothed him so much.” C17: “We’re Russian Orthodox and we go to church. It helps Mom.” C18: “We always had to watch where he was going. We’d tell him to tell us where he was going, but he would get in the boat and just go. Finally, we had to take everything away from him to keep him safe.” C19: “It’s a sad thing to see. You always want them to have their wits about them to the very end, and that wisdom that they had way back when they were younger and what they knew.”	P1: “Part of the dementia process is that you have an inherent problem with forgetting where you put things, what you’re supposed to do, and where you’re supposed to go. Sometimes it gets to the point of forgetting the people around you, which can lead to challenges and people caring for them.” P2: “For the patient themselves it’s watching them lose the ability to function. And I think the reality really sets in that they can no longer take care of themselves; they can’t function at home; they’re going to have to leave home. It’s a difficult thing to watch them go through that process.” P3: “But I think with the change in the diet and high blood pressure, and those kinds of things, that you’re seeing a lot of that kind adds to it.” P4: “We’re talking about the 60-year-olds, they’re not as active as the elders used to be. I think that’s why we’re seeing higher numbers as well.” P5: “It seems like the cardiovascular risk factors are big correlates with dementing processes, specifically Alzheimer’s disease and dementia. So, it is unsurprising that many of my patients with either Alzheimer’s, or vascular dementia, have comorbidities, such as high blood pressure, cholesterol, diabetes, and so on.” P6: “They age and have a lot of trauma. People that we’re working with, a number of them have dementia and are living way back in their earlier days of trauma; real trauma, childhood trauma.” P7: “And sometimes they’re just very isolated. There was this guy I felt there was nothing I was able to assist him with. We tried different things. We couldn’t hire respite workers to go in. I dreaded calling him because I didn’t feel l could help him with anything.” P8: “They try very hard to do the best they can for as long as they can. They will spend months and years keeping this person in the community and out of assisted living or nursing homes until they’re exhausted. Their time, energy, resources are exhausted, and then they will often suddenly need help. They give up.” P9: “Certainly providers know about it, but it’s hard to determine because a lot of things are cultural. So, if you do not have exposure to those cultural ideas and concepts, you do not know if this is this individual having problems or this is how as a whole people [Alaska Natives] think about certain things.” P10: “Providers know about dementia and many things are cultural. You do not know if this individual is having medical problems or this is how a whole group of people (e.g., AN) think about certain things.” P11: “People who are more isolated tend to have less of an understanding of their disease [dementia].” P12: “I’m obsessive about teaching our patients about physical exercise, staying cognitively intact, and watching the foods they eat. Maximizing plant-based diet, fruits, vegetables, anti-inflammatory foods.” P13: “Sticking to the Native foods, as opposed to exposing themselves to some of the westernized, bad for you, foods. Berry-picking and traditional mushroom picking and some of the grasses that are known to be good herbal remedies.” P14: “If people are feeling like they’re not thinking right and are in the earlier stages of having unclear thinking, it can be really helpful for them to use traditional healing techniques. These are more subtle treatments, sometimes just helping them to remember what’s important in their life and to help them re-engage in their community, and also creating more structure and prioritizing what’s important so they can create that circle of healing in their own life.” P15: “I know some medication, like Aricept, have helped and worked but I think as long as you catch it early on, I think it helps a lot more.” P16: “It’s when the families approach the doctors about starting some medication that might help them. This is when doctors will prescribe medications to address dementia.”	CP1: “Our relationships are key, your family and connections to your culture. Some of the most effective treatment right off is to establish those strong relationships and find out where you can get the best loving, understandings support for that individual.” CP2: “To have that community element is what is so important for Alaska Native people. Sharing food in that community, we need it. It’s so important for the spirit, which is immediately connected to the body’s well-being.” CP3: “I think until providers are able to integrate more real life, tangible and meaningful treatment regimens, a pill does not cut it. The pill does not create a sense of well-being or quality of life, which are critical to their healing.” CP4: “It seems like the cardiovascular risk factors are big correlates with dementing processes, especially Alzheimer’s dementia. It is unsurprising many of my patients who I diagnose with Alzheimer’s or vascular dementia, they have the comorbidity such as high blood pressure, cholesterol, and diabetes.” CP5: “We really need that diagnosis because it impacts what services we might be able to get for them [patient with ADRD]. If we do not see that diagnosis, we sometimes suggest to the doctor to do an exam to see what they think.”

AN, Alaska Native.

What caused ADRD?

When asked what they believe caused ADRD in their family member, the younger caregivers, those who did their own research, or had an educational background discussed alcohol use/misuse, lack of physical activity, unresolved trauma, or genetics. The older caregivers discussed ADRD as a part of natural aging and not as a result of behavior and external influence. In regard to lifestyle choices, younger caregivers referenced a history of drinking alcohol, sedentary lifestyle, or poor diet (Table 5, C3).

Speaking to physical inactivity, one caregiver believed there was a connection between ADRD and sedentary lifestyles, and its impact on social activity and engagement (Table 5, C4). Unresolved trauma was also mentioned as a cause and focused on adverse physical and mental health consequences. Caregivers underscored the loss of family and abuse such as domestic violence, and mental as well as emotional abuse (Table 5, C5).

Several caregivers did not understand the cause of ADRD and lamented their ignorance about the disease; others believed the causes were natural and expected as one grows older (Table 5, C6). Family history of ADRD emerged in their attempts to find patterns over the generations, leading interviewees to conclude that genetics also play a role in the aging process.

What are the problems of ADRD?

Caregivers faced a number of problems in caring for someone with ADRD, citing the lack of a medical understanding of the disease, personality changes among family members, role shifts and reversals in families, and inadequate caregiver education and training. Caregivers discussed frustration with their lack of scientific understanding (Table 5, C7). Regarding personality changes, several caregivers were not prepared for the unpredictable and difficult behaviors to which the condition gave rise, which was particularly challenging when it was their family members (Table 5, C8). As a result of these personality changes and unpredictable behaviors, several caregivers noted that family stay away and no longer visit (Table 5, C9).

The shifting roles of family members proved challenging, placing younger people in positions that felt disrespectful in how they had to communicate with their elders (Table 5, C10).

Another challenge was a lack of understanding of ADRD. This was true in both rural and urban communities. One caregiver shared her frustration with the lack of educational materials and the lack of classes and training for dementia (Table 5, C11, C12). Because of the lack of educational materials, caregivers took it upon themselves to learn about ADRD and to share what they learned with family members (Table 5, C13).

What type of treatment(s) are available?

Few caregivers named pharmaceutical medications when asked about available ADRD treatments. They expressed preferences for holistic approaches beyond treating ADRD symptoms per se. The discussion of treatments did not focus on delaying the progression of ADRD, but rather on providing care to ensure their loved ones remain healthy and receive needed treatments in an integrative fashion (Table 5, C14).

Caregivers discussed their use of traditional healing/medicines to treat more than just the physical health symptoms, as their family member had in the past, and they were preferred over Western medicines (Table 5, C15). These actions were not intended to treat ADRD, to delay the progression of the disease, or to cure it, but rather to assist with the mental, emotional, and spiritual aspects of living with ADRD, as well as support the caregiver as they provided care. Caregivers believed strongly in the power of spiritual practices, both Western and traditional, and music (Table 5, C16, C17).

What are your fears about ADRD?

Caregivers’ fears of ADRD emphasized the loss of their elders’ knowledge and presence in family and community. They also discussed their concerns for the increased behavioral challenges posed by their family members and not being adequately equipped to handle these challenges. These concerns grew as the disease progressed and their confidence eroded in terms of keeping the elder safe (Table 5, C18, C19).

Health Care Providers

When did ADRD start?

The health care providers in this study were both ANs and non-Natives and worked in rural and urban settings. They possessed a range of experience in addressing ADRD from general knowledge and understanding (i.e., community health aides) to expert-level specialization (i.e., neurologists at the Alaska Native Health Campus). When asked about the onset of ADRD, most providers mentioned evidence of symptoms of mild cognitive impairment, including less interest in hobbies and activities, repeating the same things over and over, having trouble remembering how to use a tool or device, and frequently forgetting month and/or year. They then typically looked for increasing impairment of activities of daily living and instrumental activities of daily living (Table 5, P1).

Providers also discussed the loss of activities of daily living and instrumental activities of daily living, which are critical to remaining independent, and the loss of ability to manage everyday functions, such as self-care, remembering people, following a medication regimen, and remaining safe as the first signs of ADRD in their patients (Table 5, P2).

What caused ADRD?

Provider assumptions about the cause of ADRD ranged from a general understanding of dietary and lifestyle changes to a sophisticated neurological basis of the disease. (Table 5, P3). They were aware of more sedentary lifestyles, which they believed contribute to the rising incidence of ADRD among ANs (Table 5, P4), including vascular and heart disease (Table 5, P5). Discussions also focused on unresolved trauma as a probable cause of ADRD among their patients (Table 5, P6).

What are the problems of ADRD?

Providers viewed lack of ADRD education and training resources as the primary problems associated with ADRD for the caregivers. One provider shared an experience she had working with a family in a rural village (Table 5, P7). Providers acknowledged that the lack of resources in the communities led to caregiver exhaustion and isolation (Table 5, P8).

What is the course of ADRD?

Providers were well versed in the scientific understanding of the course of ADRD but were much less knowledgeable about its cultural aspects among ANs (Table 5, P9). Several providers spoke of the ADRD experience with their patients, families, and communities without an appreciation of cultural differences.

One provider shared their insight on the impact of culture on the course of dementia among their AN patients (Table 5, P10). This lack of cultural understanding was often discussed when providers reflected on their experiences in trying to determine whether the changes in their patients were cognitive or cultural beliefs or behaviors. When rural patients were seen by providers in Anchorage they tended to be less aware of cognitive changes and unclear on what is happening to them (Table 5, P11). The lack of understanding of the cognitive changes as a result of ADRD, coupled with their isolation, results in a lack of understanding or awareness of current treatments for ADRD.

What treatment(s) are available?

Providers discussed treatments they provided to those with ADRD, which included traditional and Western treatments and medications. Physical activity and dietary changes were the most common treatment or prevention activities (Table 5, P12). Several providers also encouraged patients to consume more traditional foods (Table 5, P13). Discussions also focused on other forms of traditional healing, including plant-based medicines, essential oils, social engagement, and engaging in subsistence activities (Table 5, P14).

Providers also discussed Western medications being used to treat Alzheimer’s disease and dementia among ANs. One provider discussed these medications as working, but only when started earlier in the disease process, as well as how families have requested Western medication to treat dementia in their family members (Table 5, P15, P16).

AN and non-Native health care providers’ perspectives on ADRD

The AN providers in this study have a biological, or medical, understanding of ADRD, but also honored and respected their cultural values. For example, each AN provider shared how they worked to integrate culture into ADRD care and support services. Family and community are critical sources of support and well-being across the life span, and even more so as people age and these providers discussed how relationships should be one aspect of care (Table 5, CP1, CP2).

AN providers emphasized the importance of treating the person and not the disease; they are not defined by their ADRD. It is important to treat each person as unique, with varying aspects of their life and identity, and it is important to learn about them to better care for them. While the AN providers understood the biological basis of ADRD, they approached care and treatment from a holistic perspective, not just focusing on the disease but the individual’s social, spiritual, emotional, communal, and cultural well-being (Table 5, CP3).

In contrast to AN providers, the non-AN providers emphasized the biological basis of ADRD and the importance of improving health behaviors to avoid disease. They focused on cardiovascular disease, cholesterol, diabetes, and dietary changes, all of which contribute to vascular health and ADRD. In these discussions, they focused on individual behaviors, the importance of receiving formal services to manage their disease, as well as adhering to Western medications for ADRD (Table 5, CP4).

These providers focused on losses associated with ADRD and encouraged persons with dementia to access formal services. These discussions focused on the loss of independence, behavioral challenges, and the need for a formal ADRD diagnosis to receive formal support services, despite the lack of services and stigma around ADRD in AN communities (Table 5, CP5).

Discussion

Previous research has suggested that the beliefs held by Native people in regard to ADRD are less likely to focus on pathology, but rather accept its signs and consequences as a normal part of aging (Jacklin et al., 2015). Our findings are consistent with this conclusion. Ironically, providers also see ADRD as related to the aging process, albeit as an unwelcome result of living longer (Griffin-Pierce et al., 2008) and complications associated with chronic diseases. Providers clearly linked health behaviors to the cause of ADRD among AN, including dietary changes from traditional to Western foods, more sedentary lifestyles, poorer vascular health, and unresolved trauma. Providers and caregivers held this view in common.

Racial and ethnic minority groups in the United States, including AN people, tend to delay seeking help from formal systems of health care until conditions are well advanced, including dementia (Relkin, 2000; Schrauf & Iris, 2012) and diabetes (Kim et al., 2012; Lautenschlager & Smith, 2006; Patchell & Edwards, 2014). Very few of the providers whom we interviewed met with an individual and her/his family in the earlier stages of ADRD. This circumstance was an immediate consequence of the latter’s limited awareness of the key signs and symptoms of ADRD. In the absence of this awareness, caregivers’ assumptions about cognitive decline as normal among older adults lessened the likelihood of recognizing problems that may have warranted medical attention. The lack of knowledge and awareness among AN caregivers of ADRD also affects their relationships with their providers (Sommerfield et al., 2019) and whether or they continue to seek care for the person with dementia. It also reflected family members’ high threshold for tolerating impairment of daily activities, a tolerance deeply rooted in the social obligations surrounding caring for one’s elders. Acknowledging the need to incorporate patients’ and families’ explanatory models into practice is a positive step toward larger discussions of gaps in provider knowledge (Taber et al., 2015).

Caregivers and providers alike stated that ADRD was caused by past and current behaviors, including smoking, drinking, sedentary lifestyles, and diets shifting from traditional to more Western foods. Health care providers discussed more on the medical causes of ADRD, including vascular disease, consistent with the literature (Korczyn et al., 2012; O’Brien & Thomas, 2015) and their medical training. Caregivers spoke of ADRD in holistic terms, emphasizing the mental, physical, emotional, spiritual, and community aspects of health and illness (Cipriani & Borin, 2015). Providers, in turn, acknowledged their lack of understanding of these beliefs and felt their training offered limited explanations, notably with respect to holistic views of disease processes. All providers expressed a desire to learn more about their patients’ explanatory models and felt strongly that these lessons would improve their ability to care for them.

Both caregivers and health care providers discussed the role of traditional healing and encouraged its use as appropriate. Each also recognized the potential importance of Western medication, especially if understood and used appropriately in combination with traditional healing methods. This view is consistent with the broader literature of alternative and complementary medicine (Griffin-Pierce et al., 2008).

The most profound, commonly held concern was the lack of resources, including education, training, supports, and facilities equipped to care for ANs suffering from the advanced stages of ADRD. Caregivers expressed frustration at the lack of materials about the basics of ADRD, what to expect as the disease progresses, and where to access services and support to care for their family members. These challenges are not unique to caregivers in Alaska, but common as well among caregivers in low-resource populations, including those in rural areas (Innes et al., 2011), low-income families (Zhu et al., 2015), and other racial and ethnic minority groups (Dal Bello-Haas et al., 2014; Gitlin et al., 2015).

Caregivers and providers underscored their fears associated with ADRD. Some fears are shared with caregivers from the general population, including dealing with unpredictable, challenging behaviors (Cerejeira et al., 2012; Ornstein & Gaugler, 2012). The lack of knowledge about the disease process left caregivers deeply worried about the future and uncertain about the safety of the older family members. Providers reported that their lack of cultural knowledge surrounding ADRD compromises the care they offer to their AN patients. They cited constraints on the ability to establish a therapeutic alliance, on adherence to treatment recommendations, and on the appropriate timing as well as the nature of ancillary supports.

The health care providers in this study understood the importance of understanding ADRD but had differing perspectives on ADRD, which affected their relationships with caregivers (Sommerfield, 2019). The AN providers in this study emphasized the importance of community and family in their well-being and quality of life (Fazio et al., 2018) and the cultural values and teachings on taking a holistic approach to health and well-being (Lewis, 2011). The role of cultural perceptions of dementia and its importance to health, healing, and care management was woven throughout their discussions and need to be integrated into any future treatments and supports (Adebayo et al., 2020). These beliefs and approaches are in direct contrast to the non-Native providers, who placed more emphasis on modifiable lifestyle factors, such as dietary changes and physical activity to reduce the risk of cognitive impairment (Zissimopoulos et al., 2018), and accessing formal support services. The non-Native providers also discussed the losses individuals will experience as a result of ADRD and rather than apply a holistic approach to health, they emphasized individual behavior changes and Western medications. As research continues to show, cultural competency training on ADRD is needed to positively affect patient quality of care and health outcomes (Clark et al., 2018), as well as providers’ comfort with different understandings of ADRD.

Implications

This study highlights caregivers’ and health care providers’ concerns about the lack of resources specific to the awareness and treatment of ADRD, a condition of growing concern as AN people live longer. The findings underscore the need to ease the transition to the caregiver role and for balancing related demands with the comfort, safety, and quality of life of their older family members who suffer from ADRD.

We recommend developing rural outreach and support groups for caregivers to reduce isolation, to increase their knowledge about the disease process, to expand their awareness of ancillary resources, and to inform help-seeking decisions. Second, we recommend developing training and educational opportunities for health care providers in regard to the explanatory models that ANs hold with respect to ADRD and to include the voices of ANs in such efforts. Lastly, we recommend an aggressive research agenda to identify reliable and valid tools by which to screen for mild cognitive impairment and their subsequent integration within the health and human service settings to detect ADRD earlier which promises more timely, effective treatment.

Limitations

One limitation of this study is the lack of perspectives of AN persons living with ADRD to give voice to their understanding of ADRD and experiences interacting with health care providers. A second limitation is the lack of generalizability of the study findings and not being representative of all AN caregivers or health care providers across the state. This study used a convenience sample that consisted of those caregivers and providers who were accessible by phone and had time to participate in an interview.

Future Research

Future research should focus on AN persons living with dementia to learn of their experiences to better understand the historical and cultural perspectives of ADRD and how these beliefs influence treatment-seeking and adherence. Future research can also explore the impact of social determinants of health on an individual’s understanding of ADRD, their experiences with the health care system, and how geographical location (rural and urban) affects the understanding of ADRD, education, and treatment. In addition to continuing to build upon the EMI framework applied in this study, utilizing narrative medicine to advance this area of social medicine will be an important focus of future research.

Funding

This project was supported by Native Elder Research Center (P30 AG15297; S. M. Manson and D. Buchwald, PIs); subaward number FY17.001.023 (National Institutes of Health [NIH], National Institute on Aging) and Washington Wyoming Alaska Montana Idaho American Indian/Alaska Native Clinical and Translational Research Program pilot study award (J. P. Lewis, PI); subaward number G248-17-W6223 (National Institute of General Medical Sciences, NIH); Center of Excellence for American Indian and Alaska Native Health Disparities (P60 MD000507; S. M. Manson and D. Buchwald, PIs).

Conflict of Interest

None declared.