Paid Help and Caregiving Experiences of Black Caregivers of Community-Dwelling Older Adults

Abstract

Objectives:

We examine associations between use of paid help and caregiving-related experiences (emotional, financial, and physical difficulty) of Black family and unpaid caregivers of older adults.

Methods:

We examine a sample of N=572 non-Hispanic Black caregivers of community-dwelling older adults receiving help with daily activities from the 2015 National Health and Aging Trends Study (NHATS) and National Study of Caregiving (NSOC). Guided by Pearlin’s Stress Process Model, logistic regression models examine associations between assisting with finding paid help and caregiver experiences.

Results:

Black caregivers who helped care recipients find paid help more often had a college degree or higher, were helping older adults who received assistance with three or more self-care/mobility activities or who were living in poverty and were not receiving help with caregiving from family and friends. In fully-adjusted models, assisting with finding paid help was associated with emotional (AOR 1.92, 95% CI 1.27, 2.92 p<0.01) and physical (AOR 2.16, 95% CI 1.04, 4.51; p=0.04) difficulty.

Conclusions:

Greater efforts are needed to support Black family and unpaid caregivers who are caring for older adults using paid help.

Clinical Implications:

Future interventions that target Black caregivers of older adults using paid help could be useful for improving caregiving experiences.

Introduction

There are approximately 2.2 million Black/African Americans (hereinafter referred to as Black) that provide help with routine daily activities to community-dwelling older adults with disabilities (Fabius et al., 2020). In part due to cultural preferences (e.g., shared caregiving-related values and beliefs) (Nkimbeng & Parker, 2021), Black caregivers provide care to family member and other relatives (I.e. fictive kin) at higher rates than other racial/ethnic groups (Caregiving in the US in 2020, 2020). Research consistently demonstrates that Black caregivers provide care-related tasks for more than one individual, spend more hours per week providing care, and have poor health outcomes (Association, 2020; Caregiving in the US in 2020, 2020). Studies report that, relative to White caregivers, Black caregivers care for older adults with under greater financial strain, but report less emotional difficulty and more positive aspects to caregiving (e.g., feeling confident about caregiving, satisfaction with caregiving) (Fabius et al., 2020; Roth, 2015), although little is known about within group experiences. Providing care to older adults who require a prolonged and substantial care, such as hands-on help with bathing and dressing, can create poor emotional, physical, and financial outcomes (Pearlin et al., 1990; Schulz et al., 2020; Wolff et al., 2016).

In addition to the positive caregiving experiences reported among Black caregivers, this groups tends to report a need for paid help (e.g., respite, home health care), skills training, and support for assistance with providing care tasks (Burgio et al., 2003; Desin, 2016). Paid help, financed either by private pay or Medicaid Home and Community-Based Services (HCBS), primarily aims to support older adults in the community and avoid nursing home placement (Ng et al., 2015). Family caregiver experiences of using paid help are often secondary to those of care recipients and therefore less understood, even though caregiver burden is associated with adverse health outcomes, hospitalizations, and nursing home admissions older adults with disabilities (Kuzuya et al., 2011; Wolff et al., 2018).

Black caregivers often use supportive services, such as caregiver support groups, training, and respite services (Fabius et al., 2020). However, in specific subpopulations of caregivers, such as those who care for older adults with dementia, findings demonstrate that Black caregivers underutilize paid services such as respite to assist with care needs despite the reported need for help (Parker & Fabius, 2020). Findings have also demonstrated that among Black caregivers for people living with dementia, those that utilize respite services (i.e. adult day services) report lower depressive symptoms (Parker & Gitlin, 2021). There are several factors that have been cited that impact the use of paid services, such as access and availability of services (Shippee et al., 2022), cultural preferences for familial responsibility to provide care, and historical mistrust of service providers (Bonds, 2018; Scharlach et al., 2006). However, it is unclear whether the use of paid help is associated with the emotional, physical, and financial demands of Black caregivers as they provide care throughout the health trajectory of the care recipient.

Conceptual Model

The present study leverages Pearlin’s Stress Process Model (Pearlin et al., 1990), which has been used to examine caregiver health and well-being and posits that caregiving experiences result from a multidimensional process that comprises interrelated conditions. Our adapted model (Figure 1); proposes that the caregiving context (e.g., age, gender) reflects available personal and social resources that may protect or expose caregivers to stressors (Pearlin et al., 1990). Caregiving stressors (e.g., care recipient level of disability, dementia status) may be mitigated by the caregiver’s ability to cope under challenging circumstances. Caregiving resources (e.g., paid help) can influence caregiving experiences as a result of challenges related to access or availability (Alliance, 2006; Pearlin et al., 1990). We focus on emotional, physical, and financial caregiving difficulties that can have implications for caregivers’ health and caregiving tenure (Kasper et al., 1994; Pinquart & Sörensen, 2003). The primary aim of this study is to assess the association between use of paid help and caregiving experiences (emotional, physical, and financial difficulty) among Black caregivers. The secondary aim is to examine caregiving context, stressors, and support characteristics that are associated with caregiving experiences. As a result of caring for older adults with a greater need for paid help (Beach et al., 2020), and because older adults receiving paid help are more likely to experience adverse consequences due to unmet need, it is expected that caregivers who report having assisted with finding paid help will be more likely to report emotional, physical, and financial difficulty. As Black caregivers tend to report more time and provided care for recipients with greater levels of functional limitations (Fabius et al., 2020), the present study provides critical information about the relationship between paid help and care experiences in this group.

Figure 1.

Conceptual model adapted from Pearlin et al. (1990).

Methods

Participants

Our sample includes N=572 non-Hispanic Black caregivers of 372 community-dwelling older adults receiving assistance with self-care, mobility, or household activities (for a health reason). We excluded caregivers of older adults in residential care settings (e.g., assisted living) and nursing homes because they often have different experiences than those providing help to older adults in traditional community settings.

Procedures

We leverage data from the 2015 National Health and Aging Trends Study (NHATS) and National Study of Caregiving (NSOC) (Kasper, 2019). The NHATS and NSOC are two linked, nationally representative surveys of Medicare beneficiaries aged 65 and older and their family and unpaid caregivers. NHATS participants are sampled from the Medicare enrollment file, and persons in older age groups and Black non-Hispanic race and ethnicity are oversampled (DeMatteis, 2016; Montaquila et al., 2012). The first NHATS survey was fielded in 2011 with annual follow-up interviews. In 2015, the sample was replenished. NHATS participants living in the community and in residential care non-nursing home facilities identified a helper who provided assistance with self-care, mobility, or household activities (for a health reason). NHATS participants provided helper names and contact information for potential participation in the NSOC. Up to five caregivers per older adult were eligible for the NSOC. For those with more than five helpers, five were randomly selected. This process resulted in the exclusion of 108 caregivers. Details of the NSOC study design can be found elsewhere (Freedman, 2019).

Measures

Caregiving Difficulties

Caregivers reported whether caregiving was emotionally, physically, or financially difficult for them. If they responded yes, caregivers were asked: “Please tell me how difficult helping is by picking a number from 1 to 5. The number 5 means very difficult, and the number 1 means a little difficult,” followed by, “How (emotionally; financially; physically) difficult is helping (care recipient)?” We created a dichotomous variable where a score of 3–5 indicated substantial difficulty, as done in prior work (Fabius et al., 2020).

Caregiver characteristics

Our primary measure of interest was assistance with finding paid help. Each NSOC participant was asked “In the last year, have you helped (care recipient) find a paid helper to do household chores or personal care?” Responses were yes or no. Other characteristics included age (<65, 65–74, 75 and older), gender, education (high school or less, some college, college degree or higher), and relationship to care recipient (spouse, child, other). Caregiver self-rated health was dichotomized as fair or poor versus good, very good, or excellent. We measured caregiving intensity by counting the number of hours of care caregivers provided to recipients per week. We imputed values for ~7% of caregivers who were missing hours. For those who provided care on a regular schedule, missing values were recoded to the mean based on the number of days of assistance per week. For caregivers who provided care on a varying schedule, we recoded missing hours to the mean based on relationship of the caregiver to the care recipient. We also included a dichotomous yes/no measure that reflected whether caregivers had friends or family that helped them care for the care recipient.

Care recipient characteristics

We included care recipient probable dementia status, level of assistance, Medicaid-enrollment, and federal poverty level status. Probable dementia reflects a self-reported a dementia diagnosis, 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 used an established measure reflected level of assistance using a hierarchical measure of types of assistance (self-care, mobility, household for health or functioning reasons) for which help is provided (Freedman & Spillman, 2014). Activities were categorized as assistance with household activities only, 1–2 self-care or mobility activities, or 3 or more self-care or mobility activities. Medicaid-enrollment categorization was based on self-report of the NHATS participant. We included three levels (<100% of federal poverty line, 100%-<200% of the federal poverty line, and 200% of the federal poverty line or greater) of income based on federal poverty guidelines for persons 65 and older in 2015 (2015 Poverty Guidelines, 2015).

Analysis

We first present characteristics of Black caregivers of community-dwelling older adults with disabilities, by use of paid help. Next, logistic regression models were constructed to examine the relationships between using paid help and caregiver experiences. After removing missing data, the final sample size for each logistic regression model was n=556 Black caregivers. All analyses were conducted in Stata, version 15 (StataCorp, 2017) and p-value=<0.05 indicated significance. We used weighted data and variables that account for the complex sample design (DeMatteis, 2016; Kasper, 2019).

Results

Bivariate Analysis

We present caregiving context, stressors, supports, and experiences by use of paid help in Table 1. 36.7% of caregivers were younger than 65, 41.3% were aged 65–74, and 22.0% were 75 years older or older. Caregivers were more often women (60.9%), had a high school education or less (55.7%), and were more often child caregivers (51.3%). Roughly one-quarter of caregivers reported fair/poor self-rated health (24.6%). Caregivers varied in the number of hours they care for older adults per week. One quarter of caregivers were providing care for someone with probable dementia (26.2%). More than 40% of caregivers were caring for an older adult receiving one or two self-care and/or mobility activities or who were Medicaid-enrolled. More than one-third of caregivers were caring for someone living below 100% of the federal poverty level, and one-quarter of caregivers reported receiving help with caregiving from family and friend (24.4%). Caregivers reported experiencing emotional (17.7%), physical (10.1%), and financial (15.4%) difficulty.

Table 1.

Characteristics of Black Caregivers of Community-Dwelling Older Adults

	Total	No paid help	Paid help	p-value
	%	%	%
Caregiving Context
Age
<65	36.7	37.8	32.4	0.61
65–74	41.3	40.5	44.4
75+	22.0	21.6	23.2
Gender
Male	39.1	37.3	45.9	0.25
Female	60.9	62.7	54.1
Education
High school or less	55.7	58.4	45.4	0.01
Some college	18.4	19.0	16.1
College degree or higher	25.8	22.6	38.6
Relationship to care recipient
Spouse	14.8	13.8	18.5	0.14
Child	51.3	49.8	57.2
Other	33.9	36.4	24.4
Caregiving stressors
Caregiver characteristics
Fair/poor self-rated health	24.6	25.2	22.0	0.60
Hours of care in the past week
<20 hours of care	38.5	38.3	39.1	0.76
21–39 hours of care	22.9	23.8	19.5
40 or more hours of care	38.6	37.9	41.4
Care recipient characteristics
Probable dementia	26.2	26.0	26.7	0.90
Level of assistance
Household help only	28.4	29.8	22.9	0.03
1–2 Self-care/mobility activities	42.3	45.2	31.4
3 or more self-care/mobility activities	29.4	25.0	45.6
Medicaid-enrolled	43.9	42.8	47.9	0.45
Federal poverty-level status
<100% federal poverty level	32.6	29.7	43.8	0.04
100–<200% federal poverty level	46.1	48.6	37.1
200% federal poverty level or greater	21.2	21.8	19.1
Caregiving supports
Receives help from family and friends	24.4	27.7	12.0	0.01
Caregiving experiences
Emotional difficulty	17.7	15.8	24.9	0.01
Physical difficulty	10.1	8.7	15.4	0.04
Financial difficulty	15.4	14.9	17.2	0.54

Note. Data are survey-weight adjusted; National Health and Aging Trends Study and National Study on Caregiving 2015; 572 caregivers identifying as non-Hispanic Black, caring for community-dwelling older adults who report receiving assistance with self-care, mobility, and household activities (for a health reason). Data missing for gender (n=3), education (11), self-rated health (n=5), and receives help from family and friends (n=2). α=<0.05 indicates significance for all comparisons.

Caregivers who helped care recipients find paid help more often had a college degree or higher (38.6% vs. 22.6%; p=0.01), were caring for someone receiving assistance with three or more self-care and/or mobility activities (45.6% vs. 25.0%; p=0.03) as well as someone living below 100% of the federal poverty line (43.8% vs. 29.7%; p=0.04) and were less often receiving help from family and friends with caregiving (12.0% vs. 27.7%; p=0.01). With respect to caregiving experiences, caregivers who assisted with finding paid help were more likely to report emotional difficulty (24.9% vs. 15.8%; p=0.01) and physical (15.4% vs. 8.7%; p=0.04) difficulty. No significant association was found to exist between assisting with finding paid help and experiencing financial difficulty.

Multivariate Analysis Examining Associations between Paid Help, Caregiver Context, Stressors, and Support Characteristics, and Caregiving Experiences

Table 2 presents associations between finding paid help and caregiving experiences. We conducted binary logistic regressions for emotional and physical difficulty based on the results of our bivariate analysis. After adjusting for caregiving context, stressors, and supports, assisting with finding paid help was associated with emotional difficulty (AOR 1.92, 95% CI 1.27, 2.92, p<0.01) and physical difficulty (AOR 2.16, 95% CI 1.04, 4.51, p=0.04). Other factors associated with care experiences included caregiving context and stressors. Caregivers assisting care recipients who were Medicaid-enrolled were less likely to experience emotional difficulty (AOR 0.55, 95% CI 0.34, 0.88, p=0.02). Caregivers who were female (AOR 2.42, 95% CI 1.12, 5.21, p=0.03) or had fair or poor self-rated health (AOR 2.29, 95% CI 1.26, 4.16, p=<0.01) were more likely to experience physical difficulty. Caregivers assisting care recipients who were living 200% above the federal poverty level or greater (AOR 0.30, 95% CI 0.11, 0.84, p=0.02) were less likely to experience physical difficulty.

Table 2.

Associations between Use of Paid Help and Caregiving Experiences

	Emotional Difficulty			Physical Difficulty
	AOR	95% CI	p-value	AOR	95% CI	p-value
Assisted with finding paid help	1.92	1.27, 2.92	<0.01	2.16	1.04, 4.51	0.04
Caregiving Context
Age
<65	Ref			Ref
65–74	1.16	0.60, 2.25	0.65	0.60	0.22, 1.59	0.29
75+	1.05	0.51, 2.13	0.90	1.03	0.42, 2.55	0.95
Female	1.46	0.67, 3.19	0.34	2.42	1.12, 5.21	0.03
Education
High school or less	Ref			Ref
Some college	0.92	0.54, 1.56	0.75	1.94	0.95, 3.98	0.07
College degree or higher	1.40	0.68, 2.89	0.35	1.48	0.72, 3.06	0.28
Relationship to care recipient
Spouse	Ref			Ref
Child	1.33	0.52, 3.38	0.54	1.12	0.38, 3.28	0.83
Other	1.23	0.44, 3.46	0.68	0.94	0.24, 3.68	0.93
Caregiving stressors
Caregiver characteristics
Fair/poor self-rated health	1.48	0.89, 2.47	0.13	2.29	1.26, 4.16	<0.01
Hours of care in the past week
<20 hours of care	Ref			Ref
21–39 hours of care	1.03	0.49, 2.18	0.94	0.45	0.13, 1.52	0.20
40 or more hours of care	1.15	0.57, 2.31	0.70	1.13	0.51, 2.51	0.76
Care recipient characteristics
Probable dementia	1.04	0.53, 2.02	0.92	0.74	0.34, 1.62	0.45
Level of assistance
Household help only	Ref			Ref
1–2 Self-care/mobility activities	1.04	0.52, 2.09	0.90	0.51	0.16, 1.59	0.24
3 or more self-care/mobility activities	1.22	0.62, 2.42	0.55	1.04	0.39, 2.77	0.94
Medicaid-enrolled	0.55	0.34, 0.88	0.02	0.89	0.45, 1.74	0.72
Federal poverty-level status
<100% federal poverty level	Ref			Ref
100–<200% federal poverty level	1.05	0.53, 2.09	0.89	0.89	0.45, 1.74	0.72
200% federal poverty level or greater	0.55	0.23, 1.30	0.17	0.30	0.11, 0.84	0.02
Receives help from family and friends	1.04	0.55, 1.98	0.91	1.21	0.53, 2.73	0.64

Note. Data are survey-weight adjusted; National Health and Aging Trends Study and National Study on Caregiving 2015; 556 caregivers identifying as non-Hispanic Black, caring for community-dwelling older adults who report receiving assistance with self-care, mobility, and household activities (for a health reason). α=<0.05 indicates significance for all comparisons.

Discussion

The purpose of the present study was to examine associations between use of paid help and caregiving experiences in Black caregivers of community-dwelling older adults. We find that, after adjusting for caregiving context, stressors, and supports, using paid help was associated with experiencing caregiving-related physical difficulty as well as emotional difficulty. There was no association observed between finding paid help and experiencing financial difficulty. Caregivers of Medicaid-enrollees were less likely to experience emotional difficulty. Experiencing physical difficulty was associated with being female, having some college education, and fair or poor self-rated health. Those who assisted older adults with higher incomes were less likely to experience physical difficulty. Our findings call attention to the unique needs of Black family and unpaid caregivers and highlight areas for potential intervention.

Our findings seem counterintuitive to the Stress Process Model, as it might be expected that paid help would be associated with the emotional and physical difficulty among black caregivers. However, our findings may reflect the interplay between the challenges in access to paid help for caregivers and the greater level of functional impairment among the care recipient among Black care networks/dyads. It may be the case that by the time caregivers are able to access or use paid help the health needs of the care recipient are dire. For instance, older adults who are enrolled in both Medicare and Medicaid may receive paid help through Medicaid Home and Community-Based Services (HCBS), but in 2017 there were over 700,000 people on waiver waitlists in forty states (Musumecia, 2019).

Findings from the present study are likely a reflection of the substantial needs of caregivers as well as care recipients. Similar findings have been found among older adults, with those who use paid help being more likely to experience adverse consequences due to unmet need (e.g., going without taking a bath or getting dressed because no one is there to help) (Beach & Schulz, 2017). Caregivers of older adults receiving paid help may have to supplement services, since paid helpers provide assistance on schedules that do not always address the intermittent needs of older adults with disabilities (Torres, 2015). For example, family caregivers reporting emotional or physical difficulty may be helping older adults who need assistance with bathing and only receive paid help a few times a week. This gap in services can leave the family caregiver responsible for providing personal assistance to help with getting in and out of the shower, bathing, or getting dressed. Additionally, family caregivers often take on the stressful tasks of assisting with care coordination, helping oversee provider schedules. In fact, family caregivers often report feeling like managers of paid caregivers in the home (Medicine, 2016; Reckrey et al., 2022; Williamson et al., 2016). Further, because caring for an older family does not occur in a vacuum, these issues are often experienced in addition to the responsibilities of caring for other family members. Black caregivers are more likely to have multiple caregiving roles than White caregivers, and report worse health-related outcomes in these care arrangements (Kim et al., 2018). These challenges likely result in added caregiving stress, highlighting the need for innovative strategies to support caregivers of older adults receiving paid services. Successful interventions have supplemented existing services, such as Medicaid HCBS to include caregiver-directed supports (Fortinsky et al., 2016; Fortinsky et al., 2020). Specifically, one intervention providing older HCBS recipients living with dementia and their caregivers with occupational therapy and nurse visits found that caregivers receiving the intervention reported greater perceived well-being (Fortinsky et al., 2020). Our findings demonstrate that caregivers of older adults who are Medicaid-enrolled less often report emotional difficulty, perhaps reinforcing the potential for support received from services such as Medicaid HCBS. Similar strategies might be tailored to the unique needs and care preferences of Black caregivers.

In addition to caring for older adults with greater needs for services, our findings may also be attributed to several other factors that indicate race differences in the experiences of care recipients. First, prior work has demonstrated that Black older adults receive different paid services than their White counterparts. For example, a study examining race differences in Medicaid HCBS demonstrated that Black recipients less often receive nursing or durable medical equipment services (Fabius et al., 2018). Another study found that Black care recipients received fewer home health visits than White service recipients (Yeboah-Korang et al., 2011). Second, Black care recipients more often receive care from poorer quality home health agencies (Chen et al., 2017; Joynt Maddox et al., 2018). Third, Black paid service users are more likely to experience adverse health events and use health care services, such as hospitalizations, compared to White older adults (Gorges, 2019). Disparities likely exist as a result of a combination of factors, including access (Travers, 2021), preferences for care (Kasper, 2018; Robison, 2014), and discrimination (Vickrey et al., 2007). Disparities might also result in greater caregiving demands for Black caregivers, although few efforts have been made to address caregiver needs in home care services, such as through the administration of caregiver assessments that collect specific information about caregivers’ well-being, challenges, and needs related to caring for the care recipient, and link to appropriate community-based services (Kelly, 2013). One model of the caregiver assessment is through TCARE in Washington State (Montgomery, 2008). A study examining the effects of TCARE conducted in four states showed that caregivers who were assessed were less likely to report caregiver burden, depression, and intent to place the care recipient in a nursing home relative to those who did not complete the assessment (Montgomery et al., 2011). Some states conduct caregiver assessments through their state units on aging or Area Agencies on Aging (Shugrue et al., 2019), although the development of any assessment cannot be “one size fits all” and should consider the specific needs of diverse groups, since there is tremendous racial/ethnic variation in the experiences and needs of caregivers (Chow et al., 2010; Fabius et al., 2020; Miyawaki, 2016).

We acknowledge several limitations. First, our study has limitations that apply to most cross-sectional studies, including sample design, participant nonresponse, survey questions, and statistical associations, and cannot be interpreted as causal. Second, national surveys report a range in caregiving prevalence estimates as well as correlates (Giovannetti & Wolff, 2010). The benefit of using the NSOC is that care recipients identify the helpers who are subsequently interviewed as caregivers. Third, we cannot account for cultural expectations of caregiving that might contribute to our findings. Fourth, the non-Hispanic Black race categorization used in the present study does not account for the diverse ethnic groups that identify as Black, and studies should examine the unique caregiving experiences of these groups (Center, 2021; Roche et al., 2021). This may be possible through qualitative methods or survey development that specifically identifies the range of ethnic groups that identify as Black. Fifth, we are unable to identify the source or cost of paid help, or specific characteristics of paid caregivers that might contribute to caregiver experiences. Prior work has shown that dementia caregivers are less likely to report caregiving difficulty when care recipients are receiving 40 or more hours of care for week (Reckrey et al., 2021). Future studies should consider factors such as these when examining the use of paid help in Black caregivers. Despite these limitations, the present study yields important findings for better understanding the experiences of black caregivers.

In conclusion, this nationally representative study of Black family and unpaid caregivers finds that caregivers of older adults who assisted with finding paid help are more likely to experience emotional and physical difficulty. Results indicate a need for greater efforts to strengthen the method of assessing caregiver needs, as well as for innovate strategies to support Black caregivers.

Clinical Implications.

• Paid care delivery models should include caregiver assessments and supports to better meet the unique needs of racially and ethnically diverse families.

• Interventions aimed at improving collaborations and care coordination between Black family caregivers and paid services are especially needed to improve caregiving experiences

Data availability:

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