Who’s Helping Whom? Examination of Care Arrangements for Racial and Ethnic Diverse People living with Dementia in the Community

Abstract

Objective:

To address notions around care arrangements for Black and Hispanic people living with dementia (PLwD), the study examined if racial and ethnic differences exist for community-dwelling PLwD.

Methods:

Using cross-sectional data from the 2015 National Health and Aging Trends Study, we used Pearson’s chi-square and mean comparison to examine differences among a sample of n=863 community-dwelling White, Black, and Hispanic older PLwD.

Results:

Black PLwD were less likely than White PLwD to use paid help (26.8% versus 32.6%), but Hispanic PLwD were most likely to use paid help (46.2%, p<0.05). Black and Hispanic older adults were more often receiving help from a child (65.8%, 72.2%, respectively; p=0.01) or other family member (40.3%, 31.0%, respectively; p<0.01).

Discussion:

Our findings highlight the important role of familial support in care provision for Black and Hispanic communities. Caregiving supports should be intentional in centering services on the family, not a sole caregiver.

Caregiving for people living with dementia (PLwD) is a crucial public health concern, as over 6.2 million people in the United States are diagnosed with Alzheimer’s disease and related dementia (ADRD) (Alzheimer’s Association, 2022). While the rate of ADRD is alarming, Black/African Americans (hereinafter referred to as Black) and Hispanics are more likely than Whites to be diagnosed with ADRD. Specifically, Blacks are nearly twice as likely and Hispanics are nearly one-half as likely to have ADRD compared to Whites (Alzheimer’s Association, 2022). Throughout the ADRD disease trajectory, many PLwD rely heavily on familial support to manage care needs. Caring for PLwD can be an arduous tasks that requires continuous care for activities of daily living (i.e. mobility) and instrumental activities of daily living (i.e. household chores) that leads to emotional and physical difficulty (Wolff et al., 2016). In addition to providing support for everyday activities, familial caregivers for PLwD also manage behavioral and psychological symptoms of dementia like agitation, rejection of care, depression and anger (Kales et al., 2015). While studies highlight the unique mental and physical challenges that caregivers for PLwD endure (Fabius, C. D. et al., 2020; National Academies of Sciences, Engineering, and Medicine, 2016; Parker et al., 2021), there are limited studies on the relationship status and care arrangements of those providing care (Choi et al., 2021; Jutkowitz et al., 2021).

In the larger caregiver literature, most often caregivers are middle-to-older aged daughters or spouses (Wolff et al., 2016). Due to a number of factors related to the historical mistreatment Black Americans while seeking care and strong cultural reliance on family to provide care, it is often cited that the care networks of Black families of a PLwD consists largely of family members (Dilworth-Anderson & Gibson, 2002; Epps, 2014; Nkimbeng & Parker, 2021). Similarly, Hispanic PLwD have a strong reliance of family to provide care and often underutilize supportive services due to cultural and linguistic barriers (Nkimbeng & Parker, 2021). Yet at the national level, there is a dearth of evidence to support notions around care arrangements for Black and Hispanic PLwD, and if racial and ethnic disparities exist in these relationships. Given the cultural preferences of Black and Hispanics communities to utilizes familial support to assists and manage care for PLwD, it is important to identify the relationship status of such caregivers to customize supportive programs. Such customization might enhance the initiatives at the state and national level to provide tailored services to reflect cultural values and preferences in developing caregiver support programs, like the recent RAISE Family Caregivers act. Thus, to address the gap in the literature, the aim of this study is to examine if racial and ethnic differences in care arrangements exists for community-dwelling PLwD.

Methods

We use data from the 2015 National Health and Aging Trends Study (NHATS), a nationally representative study of Medicare beneficiaries ages 65 and older. NHATS participants are sampled from the Medicare enrollment file. Persons in older age groups and Black non-Hispanic race and ethnicity are oversampled (DeMatteis et al., 2016). The survey was fielded in 2011 with annual follow-up interviews. In 2015, the sample was replenished. In person interviews are conducted with study participants or proxies if the older adult is unable to participate.

Sample members consisted of 863 (weighted N = 2,951,480) community-dwelling older adults self-identifying as non-Hispanic White, non-Hispanic Black, or Hispanic, and receiving help with self-care, mobility, or household activities, with possible or probable dementia. We excluded those in residential care or nursing homes. We use a broad definition of dementia which included self-report of dementia or dementia diagnoses, a score indicating dementia on the AD8 Dementia Screening Interview, or performance on cognitive tests of memory, orientation, and executive function (Kasper et al., 2013).

We included age, gender, and marital status, living arrangement, poverty level, self-reported Medicaid-enrollment, and number of health conditions (summed from the self-report of heart attack, heart disease, hypertension, arthritis, diabetes, osteoporosis, lung disease, stroke, and cancer). A hierarchical measure of level of assistance was created to indicate the amount of help older adults received with specific tasks. Activities were categorized as assistance with household activities only, one or two self-care or mobility activities, or three or more self-care or mobility activities (Freedman, V. A. & Spillman, 2014). Care arrangement measures included number of household members, use of paid help, number of helpers, and relationship of helper. -We used existing methods to calculate hours of care received per week (Freedman & Spillman, 2014).

Analysis

We first present sociodemographic and health characteristics, by race and ethnicity, followed by care arrangements of community-dwelling black and white older adults with dementia, by race and ethnicity. All analyses were completed using Pearson’s chi-square and mean comparisons. Analyses were conducted with Stata, version 15 (StataCorp, 2017) using weighted data and variables that account for the complex survey design (DeMatteis et al., 2016; Freedman, Vicki A. & Kasper, 2019).

Results

Nearly 3 million older White, Black, and Hispanic Americans were living with probable or possible dementia in 2015 (Table 1). Racial and ethnic differences were observed across several characteristics. Female PLwD were more often Black or Hispanic (p<0.01). Black and Hispanic PLwD were less often married or living with a partner (p<0.001) and were more often living with others compared to White older adults (p<0.001). Forty percent of Black, and 60.0% of Hispanic PLwD were living below the federal poverty line compared to 14.5% of White PLwD (p<0.001). Similarly, 47.5% of Black, and 64.7% of Hispanic PLwD were Medicaid-enrolled compared to 16.2% of White PLwD (p<0.001).

Table 1.

Characteristics of Community-Dwelling Older People Living with Dementia, by Race and Ethnicity

	Total	White	Black	Hispanic
	2,951,480	1,985,897	490,408	475,174	p-value
Age
65–74	23.3	21.4	28.7	25.4	0.25
75–84	39.8	38.7	40.4	43.7
85+	36.9	39.9	30.9	30.8
Gender
Female	57.8	53.7	71.0	61.3	<0.01
Male	42.2	46.3	29.0	38.7
Marital status
Married/living with a partner	43.1	47.7	30.2	37.1	<0.001
Separated/divorced/never married	15.9	11.3	23.9	26.7
Widowed	41.0	41.0	45.8	36.1
Living arrangement
Alone	20.7	21.6	19.3	18.5	<0.001
Spouse	29.4	36.6	15.8	13.4
Others	49.9	41.8	64.8	68.1
Federal Poverty level
<100% FPL	26.1	14.5	39.9	60.0	<0.001
100–200% above FPL	36.6	37.1	38.0	33.0
>200% above FPL	37.3	48.3	22.1	7.1
Medicaid-enrolled	29.2	16.2	47.5	64.7	<0.001
Number of chronic conditions (M, 95% CI)	3.11 (2.96, 3.24)	3.08 (2.88, 3.26)	3.09 (2.79, 3.39)	3.22 (2.87, 3.56)	0.80
Level of assistance
Household only	26.1	27.0	30.2	18.1	0.15
1–2 self-care/mobility activities	33.3	33.8	34.4	30.0
3+ self-care/mobility activities	40.6	39.2	35.4	51.9

NHATS 2015; 863 community-dwelling White, Black, and Hispanic older adults living with possible and probable dementia

Racial and ethnic differences were present across several care arrangement characteristics (Table 2). Hispanic PLwD had the largest households – 32.2% lived with four or more other people, compared to 13.5% of White PLwD and 19.6% Black PLwD (p<0.001). Hispanic PLwD were more likely to use paid help (46.2%) compared to 32.6% of White PLwD and 26.8% of Black PLwD (p<0.05).With regard to relationship, Black and Hispanic older adults with dementia were less often receiving help from a spouse (31.2%, 37.9%, respectively; p<0.01) and were more often receiving help from a child (65.8%, 72.2%, respectively; p=0.01) or other family member (40.3%, 31.0%, respectively; p<0.01).

Table 2.

Care Arrangements of Community-Dwelling Older People Living with Dementia, by Race/Ethnicity

	Total	White	Black	Hispanic
	2,951,480	1,985,897	490,408	475,174	p-value
Number of household members
One	20.7	21.6	19.3	18.5	<0.001
Two	43.9	49.2	37.5	28.8
Three	17.8	15.6	23.5	20.6
Four or more	17.5	13.5	19.6	32.2
Use of paid help	33.8	32.6	26.8	46.2	0.05
Number of helpers
One	38.9	40.6	38.4	31.9	0.50
Two	36.7	35.3	35.8	43.7
Three	15.7	14.7	18.5	16.8
Four or more	8.7	9.3	7.3	7.5
Relationship of helper
Spouse	44.4	49.2	31.2	37.9	<0.01
Child	61.6	58.1	65.8	72.2	0.01
Other family	27.4	23.4	40.3	31.0	<0.01
Nonrelative	17.0	18.0	16.5	13.4	0.50
Hours of care
<20 hours of care per week	33.8	35.5	37.3	22.6	0.19
20–39 hours of care per week	22.6	21.8	21.2	27.4
40 or more hours of care per week	43.7	42.7	41.6	50.0

NHATS 2015; 863 community-dwelling White, Black, and Hispanic older adults living with possible and probable dementia

Discussion

The present study describes racial and ethnic differences in care arrangements among a national sample of older Black, Hispanic, and White PLwD. Findings support notions and beliefs surrounding the strong familial reliance for care among Black and Hispanic PLwD. Specifically, findings from the study demonstrate that Black and Hispanic PLwD were more often receiving help from a child or other family member. The study also confirmed what is largely understood with regards to racial and ethnic disparities in socio-economic characteristics, that, Black and Hispanic PLwD were more often low-income and received Medicaid assistance. The findings from the study contextualizes care arrangements for PLwD.

The finding regarding the reliance of a child or other family member among Black and Hispanic PLwD might be reflective of the lowered marital or partnered relationship among these groups. Our findings suggest that Black and Hispanic PLwD less often are married/living with a partner or live alone, yet often report living with others (non-spousal) and higher reports of household family members. Subsequently, Black and Hispanic PLwD likely rely on children and other family members to provide care. These care patterns are important to consider as child or other family care needs may differentiate from those of a spousal or partnered care dynamic. For instance, children of PLwD may have to manage caregiving responsibilities with other roles like work or providing support to their nuclear family (Pinquart & Sörensen, 2011). Previous research suggests that child and younger caregivers often report poorer mental health, which may be resultant of them adjusting their lifestyle to accommodate the roles and responsibilities of providing care for a PLwD (Chappell et al., 2015; Tatangelo et al., 2018). It is important to identify if differential health outcomes exist based on relationship status to the PLwD as support services can be augmented to address their needs. Further, reliance solely on children and other family members for care may not be a sustainable care model in the long-term, despite cultural preferences for familial support, as the number of PLwD is increasing and the number of family caregivers is expected to decrease (Redfoot et al., 2013). Therefore, it is important to identify strategies to encourage the use of more formalized supportive services to help assists and manage care needs for Black and Hispanic families to augment their reliance on familial support.

Our study demonstrated that Hispanic PLwD were more likely to use paid help despite having the lowest reported income. This may be due to the accessibility to home and community-based services offered through Medicaid, like home care and adult day care. Our findings are novel, as few studies have examined racial differences in paid help as well as subsequent health outcomes (Fabius, C.D et al., 2020; Fabius, C.D. et al., 2018). Of these studies, many have excluded Hispanic PLwD for various reasons to include a lack of an oversampled subgroup to perform population-based analysis (Rote et al., 2015). Interestingly, although Black PLwD also had high reports of Medicaid assistance, they had the lowest reports of utilizing paid help. It is unclear why this group had low reports of paid help utilization despite the potential accessibility offered through Medicaid programming. Additional research is needed to further elucidate the patterns of paid help usage among Hispanic and Black PLwD.

While our study present novel findings on care arrangements of a diverse community-based sample of PLwD, it has several limitations. One, we are unable to describe or assess factors related to culture (i.e. values, norms, preferences). Therefore we cannot assess to what degree culture impacts care arrangements. Second, we recognize there is great heterogeneity within the racial and ethnic categories of Black and Hispanic, yet we are unable to provide insight on specific nationalities. Third, we relied on cross-sectional data for our analysis. Due to this, we are unable to provide causal implications or assess how care arrangements may change over time. Future studies should examine if there are racial and ethnic difference exists in the care arrangements for PLwD throughout the disease trajectory. Despite our limitations, the current study findings provides valuable insight on the relationship status and care arrangements for community-dwelling PLwD.

Given the prevalence of ADRD in Black and Hispanic communities, it is critical to identify care partners and care arrangements among these populations to modify or develop supports to fit their preferences. Our findings highlight the important role of familial support in care provision for Black and Hispanic communities. Study findings also demonstrate the use of paid help among Hispanic PLwD in conjunction with familial support. Caregiving supportive services should be intentional in centering services on the family, not solely on a single primary caregiver.

What this paper adds:

• Our findings are novel, as few studies have examined racial differences in paid help. We demonstrate the use of paid help among Hispanic PLwD, a group that is often excluded for various reasons.

• The findings from the study contextualizes care arrangements for racial and ethnic PLwD.

Application of study findings:

• It is important to identify strategies to encourage the use of more formalized supportive services to help assists and manage care needs for Black and Hispanic families to augment their reliance on familial support.

• It is critical to identify care partners and care arrangements among Black and Hispanic families caring for PLwD to modify or develop supports to fit their preferences.

Data availability:

The data that support the findings of this study are available at https://www.nhats.org