Introduction to ADRD Care in Context

Recent estimates indicate that 6.5 million people in the United States live with Alzheimer’s disease and related dementias (ADRD; Alzheimer’s Association, 2022). Indeed, ADRD is a leading cause of disability in older adults who live through years of morbidity with disease progression (Mokdad et al., 2018). Relatedly, caring for adults with ADRD requires vast time commitments from family members. In a nationally representative U.S. population sample, persons with ADRD received 151 hrs of caregiving per month, on average, and had 1.3 caregivers, on average, at the first study visit where ADRD was detected. Eight years later, those still living in the community received almost double the amount of care; 283 hrs of caregiving from approximately 2.2 caregivers (Jutkowitz et al., 2020). More than 11 million Americans care for people with ADRD, providing 16 billion hrs (valued at $271 billion) of unpaid assistance annually (Alzheimer’s Association, 2022). Symptoms of ADRD present unique challenges for caregivers in that they include troublesome or unsettling cognitive and behavioral changes. Indeed, the demands of ADRD caregiving are described as “uniquely difficult and emotionally distressing for family members” (Mittelman et al., 1996). Though ADRD caregiving is unmistakably common regardless of race or ethnicity, the role of cultural complexity in ADRD care has been recognized, yet often neglected in research and service provision.

Older adults from minoritized racial and ethnic groups exhibit greater prevalence and incidence of ADRD than the non-Hispanic White population (Babulal et al., 2019; Zhang et al., 2016). The experience of ADRD care varies with cultural context because of differences in values, social support, and coping styles (Dilworth-Anderson et al., 2002; Janevic & Connell, 2001; Knight & Sayegh, 2010). For example, increasing evidence highlights the role of individual and cultural values in the experience of caregiving burden (Falzarano et al., 2022). Furthermore, everyday and lifelong discrimination, stress, hostility, and negativity are common and ongoing experiences for those who are members of minoritized ethnic and racial groups (Williams, 2018), which may influence ADRD caregiving experiences (Alexander et al., 2022). Focusing on caregiving among different racial/ethnic groups provides unique opportunities to examine relevant within-group factors and to emphasize the advantages of precise indicators such as geographic region, language, educational factors, acculturation, and racial socialization (Dilworth-Anderson et al., 2008). ADRD caregiving research has the potential to expand knowledge when diverse samples are included and culturally relevant conceptual models and theoretical perspectives are privileged (Dilworth-Anderson et al., 2020).

This supplemental issue is a result of the Michigan Center for Contextual Factors in Alzheimer’s Disease (MCCFAD) second Summer Data Immersion (SDI) program held June 7–16, 2021. Forty-two researchers from over 35 universities joined the virtual program, which emphasized racial/ethnic and contextual factors in the study of ADRD care using a team science approach. The program provided hands-on training in the use of publicly available data from the National Health and Aging Trends Study (NHATS) and its linked National Study of Caregiving (NSOC). This included plenary presentations about best practices for working with the data, training in advanced analytic techniques to model large-scale, longitudinal, and dyadic data, and substantively focused presentations on ADRD, race/ethnicity, and caregiving. This foundation informed collaborative workgroups formed around a common interest in subtopics of the program theme. These workgroups reflected diversity in career stage, substantive, and methodological expertise. Workgroup members codeveloped research questions and analyzed data during and after the program.

Workgroups investigated the following ADRD care topics: (a) Immigrant contexts: Factors associated with immigration are increasingly recognized as a key context for ADRD care. This workgroup considered the multiple ways that the immigrant status of the care recipient can influence perceptions of providing care as well as the presence of and access to resources available to caregivers (Garcia et al., 2022); (b) End-of-life caregiving: Relative to other types of caregivers, end-of-life caregivers provide nearly twice as many hours of weekly care and face more care challenges. This workgroup evaluated measurement invariance in role overload and gains between end-of-life caregivers and nonend-of-life caregivers (Turner et al., 2022); (c) Multiple caregivers: Care recipients often find themselves in a broader net of caregiving relationships, with multiple caregivers (both formal and informal) providing care. This workgroup presents a framework for conceptualizing collaboration in caregiving networks and proposes approaches to operationalizing—and predicting variation in—collaboration among multiple caregivers (i.e., care networks) across race and ethnicity (Ellis et al., 2022); (d) Spousal caregiving: Spousal caregiving provides a unique context to understand contextual factors such as race/ethnicity and socioeconomic status. This workgroup uses dyadic analyses to more fully understand the reciprocal effects of the ADRD care experience (Liu et al., 2022); (e) Geographic contexts: Research has documented that where older adults live matters for health and cognitive outcomes. This workgroup examined racial/ethnic patterns in how the experience of providing care to someone with ADRD varies across urban and rural contexts (Kindratt et al., 2022); (f) Interactions with the medical system: Racial/ethnic disparities in access to quality health care present critical public health issues. This workgroup advanced understanding of barriers to health care access and ways to improve the quality of care received (Wyman et al., 2022); (g) Costs of ADRD caregiving: The profound impact of ADRD on family caregivers incurs a high level of financial and nonfinancial costs to them. This workgroup estimated social activity restrictions among caregivers for older persons with versus without ADRD, variation within racial/ethnic groups, and the mediating effect of care hours (Patterson et al., 2022); (h) Coronavirus disease 2019 (COVID-19): The COVID-19 pandemic has had wide-reaching consequences for all segments of the population, including older adults living with ADRD and their caregivers. This workgroup examined how assistance networks of older adults changed in response to the onset of the COVID-19 pandemic and whether these changes differed for those with and without ADRD (Brown et al., 2022); and (i) Paid care in the contexts of community and long-term care environments: Paid care for those living with ADRD can occur in the community (e.g., home health aides) as well as in long-term care environments. This workgroup examined contexts in which paid care is received across race and ethnicity (Roche-Dean et al., 2022).

In summary, this supplemental issue presents a diversity of scholarship and research to fundamentally inform the broad base of our knowledge regarding ADRD caregiving.

Funding

This supplement was supported by the Michigan Center for Contextual Factors in Alzheimer’s Disease (MCCFAD) [P30 AG059300], funded by the National Institute on Aging of the National Institutes of Health. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.

Conflict of Interest

None declared.