Prioritizing Community-Based Care for People With Alzheimer’s Disease and Related Dementias in Ethnically Diverse Communities

There are an estimated 53 million family members, friends, or neighbors currently providing care to people with Alzheimer’s disease and Alzheimer’s disease and related dementias (AD/ADRD)—care that is often demanding and complex (National Alliance for Caregiving, 2020). Cases of AD/ADRD are projected to increase seven-fold among Hispanics and four-fold among African Americans by 2050 (Matthews et al., 2019). In parallel, the number of older Asian Americans will increase by 145% by 2030 (Lim et al., 2020). As the fastest growing racial group, Asian Americans are consistently at risk for under detection, underdiagnosis, and suboptimal management of AD/ADRD (Lim et al., 2020). The enormous contribution of family caregivers that lies within these statistics has been enumerated; however, the indispensable role of nurses in community-based care in the dementia care continuum has received inadequate attention. Nurses must be held accountable to address the caregiving challenges that often go unnoticed in ethnically diverse communities.

The responsibility of caring for persons with AD/ADRD is, and will continue to be, shouldered by older people, underrepresented racial and ethnic groups, and women. Caregivers are responsible for the daily provision of personal care, housekeeping, administration of medication, managing finances, and coordinating care commensurate with disease progression, culminating in 18 billion hours of unpaid care (Alzheimer’s Association, 2023). Ethnic minority caregivers provide more care and report dismal physical and mental health and stress (Kopel et al., 2023). These numbers and notions are not lost on those in the caregiving research world; however, meaningful change requires meaningful action and nurses are ideally suited to lead this charge. In addition, lack of meaningful shifts in long-term care policy around caregiving support has necessitated a renewed dialogue about who is responsible for what within the dementia caregiving continuum. Therefore, in this editorial, we highlight caregiving challenges in ethnically diverse communities and two promising solutions and areas of research that nurses can advocate for and pursue to improve community-based care for all.

In 2021, the National Alliance for Caregiving released a report underscoring the urgent need for culturally responsive strategies to support diverse caregivers and a more inclusive definition of family in the context of caregiving (Bose et al., 2021). The care of ethnically diverse people with AD/ADRD has almost entirely fallen on families and their hidden communities; and their relative under-use of formal paid supports (e.g., home health aides, nurses) has been assumed, by researchers in ethnogeriatrics, to be the consequence of cultural preferences and collectivist values (Guo et al., 2019; Yeo & Yoshikawa, 2019). Yet, it is often much more complex and nuanced. Minority, immigrant, and refugee communities in the United States may be struggling to balance cultural ideals that emphasize family and respect for older adults, with stigma and shame around AD/ADRD and the physical and mental exhaustion of caregiving (Martinez & Acosta Gonzalez, 2022).

To make matters worse, ethnically diverse older adults also face insurmountable barriers to health care access, including a mistrust of formal support providers, lack of culturally sensitive care and tailored services, language barriers, stigma, and culturally nuanced and marginalizing beliefs related to AD/ADRD diagnoses (Bose et al., 2021). Among immigrant and refugee populations, lack of access and limited education about the health care systems in their host countries leaves families with no choice but to provide care for family members aging in place themselves (Al-Rousan et al., 2023). This decision can delay professional assessments of the health care needs of older adults from various ethnic groups, and, in turn, have a detrimental effect on their health and worsen disparities. Instead of obtaining paid supports or nursing care, diverse caregivers often rely on networks of family, neighbors, and faith-based organizations to garner the support and resources they need to keep older family members with AD/ADRD at home. Positing that racially and ethnically diverse caregivers’ limited use of paid assistance could be explained by their cultural preferences perpetuates harmful assumptions that these piecemeal frameworks are preferred sources of care for ethnically diverse families and limit the delivery of equitable caregiving support. Such assumptions are rooted in the idea that cultural values regarding the centrality of family or filial obligation, depending on the culture, create an expectation that extended family members will assist with the care of older relatives (Yeo & Yoshikawa, 2019). However, without formal support, these expectations often result in high caregiver stress and poor health.

Therefore, we present two solutions for nurses to better support ethnically diverse caregivers and communities. First, nurses can advocate for better patient and family education related to paid assistance within the health care system. Nursing policy advocates can highlight this lack of use among ethnically diverse communities to develop targeted strategies that can lead to increased use of community-based settings of care delivery. Nurses can advocate for shoring up funding and access to formal community-based resources, and subsidies for caregivers, by leveraging their political and professional power. Second, nurses have tremendous opportunity to learn from successes in community-based health care settings—such as home health care or adult day services—to alleviate the burden of caregiving for ethnically diverse communities. Home health care provides skilled nursing care and allows caregivers to receive needed support from home health aides. However, nurses must recognize that cultural barriers may influence how caregivers make decisions surrounding who is responsible for caregiving in the home. Nurses will have to engage caregivers in culturally sensitive conversations about these concerns.

Another setting that nurses can advocate for is adult day services. These settings provide culturally and linguistically congruent care to multi-ethnic communities and are associated with improved well-being among people with AD/ADRD and their caregivers (Sadarangani & Murali, 2018). These centers provide respite, nutritious meals, and activities, and staff are largely bilingual to meet the needs of a diverse population. However, these care settings chronically experience limited funding, the absence of standardized patient- and family-centered quality measures, and understaffing. As the most trusted profession (American Nurses Association, 2023), nursing has a unique opportunity through patient and caregiver education, advocacy and policy change, and effective serious illness communication to optimize care within ethnically diverse communities.

We suggest the following four research priorities focused on adult day services and home health care. First, a key priority is examining how adult day services can be leveraged to not only support well-being among diverse persons with AD/ADRD but also uplift their caregivers. They must examine how trained bilingual or multilingual staff in community-based, long-term care settings can serve as an extended kinship network for caregivers to absorb some of their caring load. A second research priority is understanding how adult day centers can serve as a point of entry into the health care system for diverse older adults and how they can support early diagnosis and identification of cognitive impairment through evidence-based and culturally tailored screening. Third, in home health care, nurses and multidisciplinary health care professionals should focus on researching optimal, culturally sensitive approaches to care from intake to discharge. Care management and care navigation in the home health care space, typically led and delivered by nurses in many cases, must be mindful of the sociocultural needs of care recipients. Thus, the development of culturally sensitive nursing interventions, quantitatively and qualitatively informed by all relevant parties and including diverse patients and caregivers, should be prioritized. Fourth, future research should examine the extent and mechanisms by which direct care workers, paid and unpaid caregivers, and home health aides play a key role in the delivery of culturally and linguistically tailored community-based care for ethnically diverse patients and caregivers.

This call to action focuses on nursing’s role in prioritizing and improving care for people with AD/ADRD in ethnically diverse communities. As the AD/ADRD population grows and diversifies and the caregiving crisis looms, the time has come to move away from the oft-repeated mantra that ethnically diverse communities “take care of their own” and retire assumptions that diverse families in America can remain resilient in the absence of community supports. Nurses must receive the necessary education and training to become experts in community-based care for caregivers and use cultural sensitivity in their approaches. In addition, nurses should be offered training in learning how to assess for and incorporate considerations of family, culture, filial obligations, and extended kinship networks in ethnically diverse communities. In the absence of a medical break-through that can slow, prevent, or cure AD/ADRD, it will continue to foist a massive and untenable burden on families, communities, and health systems. Therefore, the time has come for nurses to use the power and privilege of their position to draw on their strong clinical acumen coupled with holistic approaches to improve community-based care and support for caregivers of ethnically diverse persons with AD/ADRD across the United States.