Caregiver Eligibility for Support Services: Correlates and Consequences for Resource Utilization

Abstract

Policymakers and community organizations have implemented numerous programs and services to support the more than 40 million family caregivers in the US. However, the existence of such services is not sufficient to ensure equitable and optimal access and utilization. Using data from the Caregiving in the US study (2015; n=1,185), we estimated that nearly one in five family caregivers do not meet broad eligibility criteria for support services. This resource gap that was particularly likely to affect high-priority populations such as those caring for someone with a mental health problem. Furthermore, ineligible caregivers had lower service utilization and increased financial strain. The findings highlight a pattern of vulnerability among caregivers who do not meet broad eligibility criteria for financial support resources. Careful policy consideration is needed to determine how support services should be allocated to maximize caregiver and care recipient outcomes at the population level.

There are nearly 40 million caregivers across the US who provide care to adult family members or friends with illnesses or disabilities (National Alliance for Caregiving & AARP Public Policy Institute, 2015a). The support they provide includes financial and emotional support, personal and medical care, and has been valued at more than $470 billion (Reinhard, Feinberg, Houser, Choula, & Evans, 2019). These caregivers represent a diverse swath of the population in the United States (US), spanning the life course and care contexts. Caregivers support loved ones with a wide array of health conditions, such as dementia (8%), cancer (7%), and mental/emotional health issues (5%) (National Alliance for Caregiving & AARP Public Policy Institute, 2015a). Nearly half of adult caregivers are below age 50 (National Alliance for Caregiving & AARP Public Policy Institute, 2015a).

Although many caregivers find satisfaction in their role, more than half of caregivers report moderate or high levels of burden (National Alliance for Caregiving & AARP Public Policy Institute, 2015a), and experience increased risk of physical and mental health problems, including depression and anxiety (National Academies of Sciences Engineering and Medicine, 2016; Pinquart & Sorensen, 2003). In addition, caregivers often experience financial difficulties and financial burden related to their caregiving role (National Alliance for Caregiving & AARP Public Policy Institute, 2015a). Financial costs to caregivers include both direct costs related to caregiving, such as expenses related to transportation and necessary home modifications, as well as indirect costs related to employment changes and downstream impacts of reduced employment on later life financial well-being (Keating, Fast, Lero, Lucas, & Eales, 2014; Van Houtven, Coe, & Skira, 2013). These burdens and other adverse impacts of caregiving can compromise caregivers’ ability to provide effective and high quality care (Fulmer et al., 2005; Schulz & Tompkins, 2010) and decrease the likelihood that care recipients will be able to remain integrated in their homes and communities (Betini et al., 2017).

Policymakers have responded by mandating and providing funding for programs that support family caregivers. Resources such as respite care, caregiver training, and transportation assistance can play a critical role in counterbalancing caregivers’ burden and preventing burnout. For example, the National Family Caregiver Support Program (NFCSP) provides state-administered funding for caregiver resources (Administration for Community Living, 2017). More than 700,000 caregivers in the US received NFCSP services in 2014, according to the Administration for Community Living (Administration for Community Living, 2017). Programs funded by NFCSP play an important part in caregivers’ ability to maintain their caregiving role and keep their loved ones at home: 74 percent of caregivers reported that services enabled them to provide care longer than would have been possible otherwise; 88 percent reported that services helped them to be a better caregiver; and nearly 62 percent indicated that their care recipient would be living in a nursing home without these services (Administration for Community Living, 2017). Furthermore, receipt of NFCSP services is associated with reductions in burden and improvements in confidence among caregivers (Avison et al., 2018).

Though caregiver support programs and resources are important, their mere existence does not ensure that caregivers can access and make appropriate use of such programs. There is considerable variability in service utilization (S. Hong, 2010), and caregivers consistently underuse formal support services, even those that are of high interest to them (Dionne-Odom et al., 2018; Leggett, Meyer, Bugajski, & Polenick, 2020). Drawing on Eisenberg and Power’s metaphor of “voltage drops” (Eisenberg & Power, 2000), we conceptualize caregivers’ access to and utilization of resources as a multi-step cascade. In order to receive caregiving-specific supports and services individuals must first identify themselves as caregivers. Next, they must be aware that services and programs are available to support them in their role and have the capacity (i.e., time and energy) to engage with the organizations and agencies that provide the resources. A subset of caregivers will then find that they are not eligible for some or all of the resources they want or need, due to characteristics of the care recipient or caregiver such as age, health condition, or economic means. Caregivers who are eligible for a service must then navigate the application and enrollment process, which can be burdensome for caregivers whose time and emotional capacity is already stretched. Finally, caregivers must actually receive the resources they want and need, which is contingent on institutional capacity (i.e., funding and staff availability) to deliver timely services. Ultimately, only a minority of caregivers access resources available to them, such as transportation assistance (25 percent) or respite services (14 percent), or requesting information about financial assistance (25 percent) (National Alliance for Caregiving & AARP Public Policy Institute, 2020).

This paper seeks to assess how eligibility contributes to this resource cascade. For example, despite the demonstrated effectiveness of NFCSP services,(Avison et al., 2018) not all caregivers are eligible for all NFCSP services or other programs and supports. Although NFCSP agencies provide wide access to information and education, eligibility criteria guide the allocation of financial resources such as grants to support respite care or a paid in-home caregiver. Eligibility for NFCSP services is tied to the care recipient’s age and health condition (i.e., must be 60 years of age or older, or have Alzheimer’s disease or a related disorder) or the age of the caregiver (i.e., must be 55 years of age or older) and their relationship to the care recipient (Administration for Community Living, 2017). Many state-level programs have similar eligibility criteria (Gardiner, Taylor, Robinson, & Gott, 2019). Caregiving, however, spans age groups, relationships, and condition types (National Alliance for Caregiving & AARP Public Policy Institute, 2015a). This situation presents the possibility that a vulnerable subset of family caregivers may find themselves ineligible for services and therefore fall into a resource gap. The aims of this study were therefore to: 1) Determine what proportion of caregivers do not meet broad eligibility criteria for services based on age, condition, and relationship criteria; 2) examine the correlates of ineligibility, in order to understand whether key subgroups of caregivers are less likely to be eligible for services; and 3) determine whether ineligibility is associated with decreased use of other support services (e.g., respite care) or financial strain. We hypothesized that ineligible caregivers would be less likely to use support services and more likely to experience financial strain than caregivers meeting eligibility criteria. The findings from this study provide critical information about gaps in eligibility to current caregiver services, which can be used to better respond to the needs of caregivers and their caregiver recipients.

Design and Methods

Data were obtained from Caregiving in the US 2015 (https://www.caregiving.org/research/caregivingusa/), a national survey conducted by the National Alliance for Caregiving and the AARP (formerly the American Association of Retired Persons) to provide a snapshot of caregiving in the US. The data were collected based on a random selection of telephone numbers and residential addresses and an oversampling of racial and ethnic minority groups (National Alliance for Caregiving & AARP Public Policy Institute, 2015a). Online surveys collected data from US adults age 18 and older using a national, probability-based online panel. Detailed information about the data collection methodology are available (National Alliance for Caregiving & AARP Public Policy Institute, 2015a). The current study is a secondary analysis of these cross-sectional data. This project was deemed exempt from IRB review because the data are de-identified and publicly available.

Sample

Participants were eligible for the current study if they participated in an online interview as part of the base Caregiving in the US 2015 sample and reported being a family caregiver in the past twelve months (“At any time in the last 12 months, including now, have you provided unpaid care to relative or friend 18 years or older to help them take care of themselves?”). A total of 7,660 participants were screened for their caregiver status. Of these, 6,353 participants were not caregivers; an additional 59 participants were excluded because they resided in an institution and thus were ineligible to complete the study (n=4) or because they declined to complete the study (n=55). This screening resulted in a sample of 1,248 eligible caregivers. Two caregivers were excluded due to missing data on the key indicators for assessing eligibility criteria (care recipient age, care recipient health condition, caregiver age, or relationship to the care recipient). An additional 61 caregivers were dropped due to missing data on other covariates, resulting in a final sample of 1,185 caregivers. Caregivers excluded due to missing covariate data differed from caregivers in the final sample by age (18–49 years of age: 56 percent among excluded caregivers vs 39 percent among caregivers in the final sample, p=.03), race/ethnicity (black: 25 percent among excluded caregivers vs 16 percent in the final sample; asian: 26 percent among excluded caregivers vs 16 percent in the final sample, p=.03) and income (<$30,000 per year: 51 percent among excluded caregivers vs 27 percent in the final sample, p<.01). Caregivers excluded due to missing covariate data were also less likely to be caring for someone with a mental or emotional problem than those in the final sample (10 percent among excluded caregivers vs 21 percent in the final sample, p=.04).

Measures

Eligibility for financial resources was evaluated based on broad age and health condition criteria. Adult caregivers were classified as eligible if they were: 1) providing care to someone age 60 or older; or 2) providing care to someone with Alzheimer’s or dementia; or 3) aged 55 years or older and providing care to an adult relative. All other caregivers were classified as ineligible. The dataset only assessed caregiving for adults; thus, caregivers of children younger than 18 years of age with disabilities or special healthcare needs were not evaluated.

Correlates of interest included caregiving characteristics and sociodemographic characteristics of the caregiver and care recipient. Caregiving characteristics included whether the caregiver was the primary caregiver (“Who would you consider to be the person who provides most of the unpaid care?”; “self” was coded as primary caregiver; “someone else” or “equally shared responsibility” was coded as not primary caregiver); hours per week of care (continuous and categorized as 0–8; 9–20; 21–40; or >40, consistent with other reports using these data); duration of caregiving (reported in years, with additional options to select <6 months, 6 months to <1 year, or “all their life” and used as both continuous and categorized as <6 months; 6 months-<1 year; 1–4 years; 5–9 years; or 10+ years, consistent with other reports using these data); co-resident status (“lives with caregiver” or “lives elsewhere”); relationship with the care recipient (care recipient is spouse/partner; parent/in-law; child; sibling; friend/non-relative; or other relative); characteristics of the care recipients’ condition (short term physical disability; long term physical disability; emotional or mental health problem; developmental or intellectual disorder; behavior issues; each characteristic was coded as “yes” if it was endorsed by the caregiver and “no” otherwise; the condition characteristics are not mutually exclusive); number of limitations in activities of daily living (ADLs, e.g., getting dressed) and instrumental activities of daily living (IADLs, e.g., grocery shopping); and whether the care recipient received other unpaid care. Caregiver characteristics included age (continuous and categorized as 18–49 years; 50–64 years; or 65+ years for descriptive analyses); sex (male or female); race/ethnicity (coded as white [non-Hispanic], black [non-Hispanic], Hispanic, or other); marital status (married or living with partner vs. widowed, separated, divorced, or single, never married); education (coded as high school or less; some college/technical school; or college graduate or more); employment (coded currently employed or not employed); and income (reported as <$15,000; $15,000-$29,999; $30,000-$49,999; $50,000-$74,999; $75,000-$99,999; or >$100,000 per year). Care recipient characteristics included age (continuous and for the descriptive analyses categorized as 18–49 or 50+) and sex (male or female).

Outcome variables included service utilization and financial strain. Specifically, caregivers endorsed (“yes” vs “no”) whether: 1) the care recipient had received any paid care in the past 12 months; 2) the caregiver had ever used respite services; 3) the caregiver had used transportation services, or 4) the caregiver had made home modifications. Caregivers also reported financial strain of caregiving (Likert scale from 1 [not a strain at all] to 5 [very much a strain] and coded as none [1] vs. any [2–5]).

Analytic approach

We first evaluated the proportion of caregivers who met the broad eligibility criteria. We used descriptive statistics and bivariate analyses (i.e., cross-tabulations with chi-squared tests; means and standard deviations with t-tests) to assess the characteristics of eligible versus ineligible caregivers and assessed multicollinearity among covariates. Only one pair of covariates approached collinearity: primary caregiver status and receipt of other unpaid care (Cramér’s V=0.70). Other unpaid care was therefore not included in the multivariable analyses. To determine the correlates of eligibility, we regressed eligibility status on all caregiver, care recipient, and caregiving characteristics in a multivariable logistic regression. For continuous variables, squared and cubed terms were tested in the model to capture possible non-linearity. To determine the association between eligibility status and caregiver outcomes, we regressed each outcome on eligibility status, controlling for the caregiver, care recipient, and caregiving characteristics. A separate regression was conducted for each outcome of interest; results are presented as odds ratios (OR) with 95% confidence intervals (CI). We then calculated the average marginal effect (AME) of each independent variable (Norton, Dowd, & Maciejewski, 2019). All analyses used survey weighting intended for reporting substantive results among the caregivers in this dataset (National Alliance for Caregiving & AARP Public Policy Institute, 2015b), to account for the complex sampling frame and survey non-response. Analyses were conducted in R 4.0.2 (R Core Team, 2020).

Results

Overall, 82 percent of the caregivers met eligibility criteria. On average, caregivers were 50 years of age; just over half were female (59%). Nearly half (49%) were caring for a parent or parent-in-law and the majority (63%) were the primary caregiver. Table 1 summarizes the characteristics of eligible and ineligible caregivers.

Table 1.

Characteristics of caregivers by resource eligibility criteria^a

	Eligible	Ineligible
Unweighted N	1012	173
	% or mean	% or mean	p-value
Caregiving characteristics
Primary Caregiver	61.4%	70.0%	0.04
Hours per week			0.79
0–8	45.9%	47.6%
9–20	21.6%	23.7%
21–40	9.6%	8.1%
>40	22.9%	20.5%
Mean	24.8	22.8	0.41
Duration			<0.01
<6 months	26.3%	43.6%
6 months–1 year	19.6%	19.6%
1–4 years	28.4%	18.0%
5–9 years	13.5%	8.0%
10+ years	12.3%	10.8%
Mean	4.1	3.2	0.11
Coresident (lives with caregiver)	32.3%	44.2%	<0.01
Relationship			<0.01
Spouse/partner	11.7%	15.9%
Parent/in-law	52.5%	31.6%
Child	4.4%	9.7%
Sibling	4.0%	11.5%
Friend/non-relative	12.7%	23.3%
Other relative	14.7%	7.9%
Short Term Physical Condition	33.0%	43.1%	0.01
Long-term physical condition	62.3%	42.5%	<0.01
Emotional or Mental Health Problem	19.5%	33.4%	<0.01
Developmental or Intellectual Disorder	3.0%	7.9%	<0.01
Behavioral Issue	5.9%	9.5%	0.09
ADLs (mean)	1.68	1.58	0.47
IADLs (mean)	4.2	4.08	0.41
Other unpaid care	56.6%	41.5%	<0.01
Caregiver Characteristics
Age			<0.01
18–49	38.6%	84.0%
50–64	38.0%	15.3%
65+	23.3%	0.8%
Mean	52.68	34.85	<0.01
Gender			0.41
Male	40.0%	43.4%
Female	60.0%	56.6%
Race/ethnicity			0.01
White	64.9%	52.3%
Black	12.0%	14.2%
Hispanic	14.8%	24.3%
Other	8.3%	9.2%
Married	65.0%	70.7%	0.17
Education			0.02
High school or less	34.8%	40.6%
Some college/tech school	28.3%	33.8%
College graduate or more	36.9%	25.6%
Employment			<0.01
Employed	57.8%	71.5%
Not Employed	42.2%	28.5%
Income			0.07
<$15,000	10.1%	16.8%
$15,000–$29,999	15.2%	17.6%
$30,000–$49,999	19.5%	14.4%
$50,000–$74,999	17.5%	18.7%
$75,000–$99,999	13.4%	14.0%
$100,000+	24.4%	18.6%
Care Recipient Characteristics
Age (years, mean)	74.93	44.36	<0.01
Gender			0.21
Male	33.7%	38.9%
Female	66.3%	61.1%

Note. Data are from Caregiving in the US 2015 (n=1,185); all estimates are weighted to account for the complex sampling frame and survey non-response. ADL: Limitations in Activities of Daily Living (e.g., bathing, dressing); IADL: Limitations in Instrumental Activities of Daily Living (e.g., cooking, shopping)

^aEligible caregivers were: 1) providing care to someone age 60+; or 2) providing care to someone with Alzheimer’s or dementia; or 3) age 55+ and providing care to an adult relative.

Table 2 shows the correlates of ineligibility in the multivariable analysis. After controlling for caregiving characteristics, caregiver characteristics, and care recipient characteristics, we found that Hispanic caregivers were seven percentage points more likely to be ineligible for resources compared to white (non-Hispanic) caregivers (OR [95% CI]=1.74 [1.02, 2.96]; AME [95% CI]=0.07 [0.00, 0.14]). Caregivers who were married were six percentage points more likely to be ineligible compared to unmarried caregivers (OR [95% CI]=1.69 [1.04, 2.75]; AME [95% CI]=0.06 [0.01, 0.11]), and those who were low income were 14 percentage points more likely to be ineligible (<$15,000 per year vs. >$100,000 per year: OR [95% CI]=2.83 [1.26, 6.38]; AME [95% CI]=0.14 [0.03, 0.25]). Caregivers who were unemployed were 11 percentage points less likely to be ineligible (OR [95% CI]=0.38 [0.24, 0.60]; AME [95% CI]=−0.11 [−0.16, −0.06]). Caregivers who had been providing care for longer duration were less likely to be ineligible. Compared to participants caring for a parent or parent-in-law, those caring for their adult child, sibling, or friend were also more likely to be ineligible (OR [95% CI]=2.69 [1.29, 5.64] and AME [95% CI]=0.13 [0.02, 0.24]); OR [95% CI]=6.27 [3.11, 12.64] and AME [95% CI]=0.28 [0.15, 0.40]; OR [95% CI]=2.86 [1.63, 5.02] and AME [95% CI]=0.14 [0.05, 0.22], respectively), as were those living with the care recipient (OR [95% CI]=2.11 [1.27, 3.50]; AME [95% CI]=0.09 [0.03, 0.16]). Caregivers providing care for someone with an emotional or mental health condition were eleven percentage points more likely to be ineligible (OR [95% CI]=2.25 [1.42, 3.55]; AME [95% CI]=0.11 [0.04, 0.17]) compared to those providing care for someone without an emotional or mental health condition.

Table 2.

Correlates of ineligibility^a for financial resources among a national sample of family caregivers

	OR (95% CI)	AME (95% CI)
Caregiver Characteristics
Gender (female vs. male)	0.98 (0.66, 1.44)	0.00 (−0.05, 0.04)
Race/ethnicity (vs. white non-Hispanic)
Black (non-Hispanic)	1.53 (0.91, 2.60)	0.05 (−0.02, 0.12)
Hispanic	1.74 (1.02, 2.96)	0.07 (0.00, 0.14)	ƚ
Other	1.54 (0.83, 2,85)	0.05 (−0.03, 0.13)
Married (yes vs. no)	1.69 (1.04, 2.75)	0.06 (0.01, 0.11)	*
Education
High school or less	REF
Some college/tech school	1.28 (0.81, 2.03)	0.03 (−0.03, 0.09)
College graduate or more	0.65 (0.38, 1.10)	−0.05 (−0.11, 0.01)
Employment (not employed vs. employed)	0.38 (0.24, 0.60)	−0.11 (−0.16, −0.06)	***
Income
<$15,000	2.83 (1.26, 6.38)	0.14 (0.03, 0.25)	*
$15.000–$29,999	1.37 (0.68, 2.78)	0.04 (−0.05, 0.12)
$30,000–$49,999	0.85 (0.42, 1.75)	−0.02 (−0.09, 0.06)
$50,000–$74,999	1.53 (0.84, 2.81)	0.05 (−0.02, 0.12)
$75,000–$99,999	1.26 (0.66, 2.4)	0.03 (−0.05, 0.10)
$100,000+	REF
Care Recipient Characteristics
Gender (female vs. male)	1.07 (0.72, 1.58)	0.01 (−0.04, 0.05)
Caregiving Characteristics
Primary Caregiver (yes vs. no)	1.28 (0.83, 1.98)	0.03 (−0.02, 0.08)
Hours per week	0.95 (0.87, 1.03)	−0.01 (−0.02, 0.00)
Duration (years)	0.75 (0.64, 0.87)	−0.03 (−0.05, −0.02)	***
Squared term	1.02 (1.01, 1.04)	0.00 (0.00, 0.00)	***
Cubed term	1.00 (1.00, 1.00)	0.00 (0.00, 0.00)	**
Coresident (yes vs. no)	2.11 (1.27, 3.50)	0.09 (0.03, 0.16)	**
Relationship
Spouse/partner	2.01 (1.03, 3.92)	0.08 (−0.01, 0.17)	ƚ
Parent/in-law	REF
Child	2.69 (1.29, 5.64)	0.13 (0.02, 0.24)	*
Sibling	6.27 (3.11, 12.64)	0.28 (0.15, 0.4)	***
Friend/non-relative	2.86 (1.63, 5.02)	0.14 (0.05, 0.22)	***
Other relative	0.66 (0.31, 1.42)	−0.04 (−0.1, 0.03)
Short Term Physical Condition (yes vs. no)	1.23 (0.77, 1.96)	0.03 (−0.03, 0.08)
Long-term physical condition (yes vs. no)	0.71 (0.44, 1.12)	−0.04 (−0.1, 0.01)	ƚ
Emotional or Mental Health Problem (yes vs. no)	2.25 (1.42, 3.55)	0.11 (0.04, 0.17)	**
Developmental or Intellectual Disorder (yes vs. no)	1.29 (0.62, 2.69)	0.03 (−0.07, 0.13)
Behavioral Issue (yes vs. no)	0.8 (0.41, 1.55)	−0.03 (−0.1, 0.05)
ADLs	0.98 (0.87, 1.09)	0.00 (−0.02, 0.01)
IADLs	0.96 (0.86, 1.09)	0.00 (−0.02, 0.01)

Note: Data are from Caregiving in the US 2015 (n=1,185); all estimates are weighted to account for the complex sampling frame and survey non-response. ORs were calculated using multivariable logistic regression and indicate the odds of ineligibility associated with each characteristic, controlling for all other characteristics in the table. OR: Odds ratio; CI: Confidence interval; AME: Average marginal effect; REF: Reference category; ADL: Count of limitations in activities of daily living; IADL: Count of limitations in instrumental activities of daily living.

^ƚp<0.10,

^*p<0.05,

^**p<0.01,

^***p<0.001.

^aEligible caregivers were: 1) providing care to someone age 60+; or 2) providing care to someone with Alzheimer’s or dementia; or 3) age 55+ and providing care to an adult relative.

Table 3 shows the associations of eligibility with service use and financial strain. Controlling for covariates, ineligible caregivers were 16 percentage points less likely to use paid help as eligible caregivers (OR [95% CI]=0.41 [0.26, 0.65]; AME [95% CI]=−0.16 [−0.24, −0.09]). Ineligible caregivers were eight percentage points less likely to use both transportation and home modification services (OR [95% CI]=0.60 [0.36, 0.99], AME [95% CI]=−0.08 [−0.15,−0.01] and OR [95% CI]=0.63 [0.40, 0.98], AME [95% CI]=−0.08 [−0.16, −0.01], respectively). There were no statistically significant differences in their use of respite care (OR [95% CI]=0.66 [0.38, 1.14]). Ineligible caregivers were 11 percentage points more likely to report financial strain than ineligible caregivers (OR [95% CI]=1.78 [1.17, 2.73]; AME [95% CI]=0.11 [0.03, 0.19]). Full model results are available in the Supplemental Materials.

Table 3.

Association between ineligiblity for financial resources with support services use and financial strain

	Paid help		Respite		Transportation		Home modifications		Any financial strain
	OR (95% CI)	AME (95% CI)	OR (95% CI)	AME (95% CI)	OR (95% CI)	AME (95% CI)	OR (95% CI)	AME (95% CI)	OR (95% CI)	AME (95% CI)
Eligibility a
Yes	REF	REF	REF		REF		REF		REF
No	0.41 (0.26, 0.65)	−.16 (−.24, −.09)***	0.65 (0.36, 1.17)	−.04 (−.10, .01)	0.60 (0.36–0.99)	−.08 (−.15,−.01)*	0.64 (0.41, 0.99)	−.08 (0.16, −.01)*	1.77 (1.15, 2.73)	0.11 (0.03, 0.19)**

Data are from Caregiving in the US 2015 (n=1,185); all estimates are weighted to account for the complex sampling frame and survey non-response Models control for caregiver, care recipient, and caregiving characteristics.

OR: Odds ratio; CI: Confidence interval; AME: Average marginal effect; REF=Reference category.

^ƚp<0.10,

^*p<0.05,

^**p<0.01,

^***p<0.001.

^aEligible caregivers were: 1) providing care to someone age 60+; or 2) providing care to someone with Alzheimer’s or dementia; or 3) age 55+ and providing care to an adult relative.

Discussion and Implications

We estimated that the majority of caregivers (82%) fell within the broad eligibility criteria for support services and resources. However, those who were not eligible were overrepresented by high-risk subsets of the caregiving population, including: low income caregivers, those who live with their care recipient, parents who care for their adult child with an illness or disability, sibling and friend caregivers, and those who care for someone with an emotional or mental health problem. Moreover, caregivers who did not meet eligibility criteria were less likely to use paid help, transportation and home modification services, and were more likely to report financial strain compared to caregivers who met the eligibility criteria.

The correlates of eligibility illuminate subgroups of caregivers who may not have adequate access to support services. For example, low income caregivers often experience double demands, not only providing more hours of care but also experiencing greater caregiving-related financial burden than their higher-income counterparts (Evercare & National Alliance for Caregiving, 2007). Likewise, living with a care recipient is associated with greater levels of stress and burden (National Alliance for Caregiving & AARP Public Policy Institute, 2015a). Thus, the need for support services may be greater for these subsets of caregivers, even as individuals in these subgroups are less likely to meet eligibility criteria. Also notable is the observation that factors indicative of caregiving intensity – specifically primary caregiver status, hours per week of caregiving, and the number of ADLs and IADLs – were not associated with eligibility. This dissonance highlights potential vulnerabilities among those who do not meet broad eligibility criteria.

One area of particular policy and practice interest is the overrepresentation of two ineligible subgroups: 1) parents who care for their adult child, and 2) caregivers for recipients with emotional or mental health problems. Despite the presence of specific services targeting these groups (e.g., Social Security Income and Social Security Disability Insurance programs), such caregivers report challenges in accessing needed support resources (Brown, Harry, & Mahoney, 2018; Cheng, Backonja, Buck, Monroe-DeVita, & Walsh, 2020).

Parents under the age of 55 who care for an adult child with an illness or disability face unique challenges, but little research has assessed their access to and utilization of caregiver supports. Parents of disabled children often provide a lifetime of care (Kelly & Kropf, 1995), reporting greater fatigue and poorer affect than parents in the general population (Smith et al., 2010). Family supports have been posited to play a critical role in maintaining high-quality care (National Academies of Sciences Engineering and Medicine, 2016), as well as quality of life in such families (Wang & Brown, 2009). Nevertheless, the availability of resources and services drops considerably when disabled children reach adulthood (Neece, Kraemer, & Blacher, 2009). Most parents of adults with disabilities underuse support services (Marsack-Topolewski, 2019), reporting administrative barriers and challenges (Brown et al., 2018). Similarly, parental caregivers of adults with other types of conditions face challenges to obtain recognition, support, and resources (Cheng et al., 2020; McCarthy, McNeil, Drew, Orme, & Sawyer, 2018). Although these caregivers will likely reach eligibility as they age, early receipt of services may be critically important for preventing adverse outcomes, burnout, or dropping out of the caregiving role. Therefore, this subgroup may be of particular interest to policymakers, advocates, and practitioners seeking to ensure continued, quality, lifelong care for individuals with disabilities and special healthcare needs.

Similarly, mental and emotional health is a high-priority issues in many communities. Approximately 46.6 million US adults experienced a mental illness in 2017 (National Institute of Mental Health, 2019). These individuals often live with family members and rely on them for caregiving, such as transportation to mental health appointments and assisting them with daily functions (Gater et al., 2014). In this study we found that one in five caregivers reported caring for someone with a mental or emotional problem. Caregivers of individuals with mental health conditions experience emotional, financial, and physical burdens, daily hassles and disruptions of their day to day life, which can result in friction within their families and frustration and difficulty navigating the health care system (von Kardorff, Soltaninejad, Kamali, & Eslami Shahrbabaki, 2016). These caregivers are particularly vulnerable to developing physical health problems or emotional stress (National Alliance for Caregiving, 2016), experiencing poor health (Barnhart et al., 2020), and thus have increased needs for support services and resources. Given the community-wide impact of mental health problems, better understanding and filling the gap between need and resource availability for this subgroup is a key priority for public health systems and policymakers.

Importantly, this study revealed an association of potential eligibility for financial resources with both the use of support services and perceived financial burden. Both the need for and availability of resources are associated with service utilization (Potter, 2018). The current study shows that eligibility criteria also play a key role in meeting the needs of caregivers. When paid help, transportation services, and home modification are underutilized due to lack of access to financial resources, caregivers are at risk of adverse consequences. Indeed, paid care services have been shown to reduce caregiver burden (Nakagawa & Nasu, 2011), as does the cumulative set of resources caregivers have at their disposal (M. Hong & Harrington, 2016).

Caregivers face a number of challenges to navigate and access potential services and resources. Specific programs, funds availability, and eligibility criteria vary across service providers and localities, with complex application processes (Gardiner et al., 2019; Reinhard et al., 2014), including local variation in the administration of the NFCSP (Shugrue et al., 2019). It can be overwhelming for caregivers to identify and navigate numerous programs with different eligibility requirements, which may result in lower service utilization. Caregivers feel these are vital services that provide a lifeline to support, yet clearly describe challenges with knowing about and accessing services (Bruening et al., 2020; Dionne-Odom et al., 2018). Furthermore, despite the growth in respite care utilization in recent decades (Wolff et al., 2018), only a fraction of caregivers use these services. This study confirms that non-use of services is prevalent even among caregivers likely to meet eligibility criteria. While the intent is that caregivers with the most need access these services, it may instead be the most savvy caregivers – those who already have the resources of time, energy, education, knowledge, or luck – may be receiving the benefits of these services, while others with fewer existing resources do not have the capacity to navigate the resource cascade. Research on the NFCSP suggest that program participants report both higher incomes, greater education, and greater caregiving intensity than comparable adults (Zebrak & Campione, 2020), implicating a role for both need and pre-existing resources. This combined evidence underscores the need to streamline and simplify application and navigation processes. Future research is needed to understand vulnerable subsets of caregivers who may need, but not have access to, financial support. Innovative solutions are crucial to identify and deliver support to caregivers with the greatest need. Furthermore, future research is needed to understand how and why caregivers do or do not access the full cadre of support services available to them.

This study should be interpreted in light of several potential limitations. This study only assessed broad eligibility criteria based on age and health condition, and it is possible that state or local systems, or non-profit organizations and foundations may provide services and resources that cover some or all high-risk caregivers who fall outside of these criteria. Nevertheless, many state-level programs have similar eligibility criteria to those assessed here (Gardiner et al., 2019). Furthermore, many programs, including the NFCSP, are administered at the state level with variation in services offered and detailed eligibility requirements. Despite our efforts to control for covariates in this study, unobserved confounders at the individual-, dyadic- and community-level are likely to remain. For example, caregivers’ knowledge of financial services, care recipient functional status and state-level factors such as Medicaid expansion and generosity of benefits are likely to influence both caregiver need and the availability of supports. Future research with rich multi-level data will be critical for fully assessing the complex pathways influencing access to and utilization of resources. Finally, we used the broadest interpretation of the eligibility criteria: we did not attempt to parse the disability status of care recipients ages 18–59 given the limited information about care recipients’ health condition and functional ability in the dataset. As a result, the estimates of the proportion of ineligible caregivers are likely conservative.

Nevertheless, the findings from this study have important implications for researchers, practitioners, and policymakers. This study indicates the key role that eligibility alone may have on caregivers’ potential to receive high quality and effective support. Ensuring that resources are equitably allocated according to need is a crucial step for policymakers. The RAISE Family Caregivers Act has mandated the development of a national family caregiving strategy (Bangerter & O’Malley, 2020). This mandate provides an opportunity for federal policymakers to re-assess and possibly redesign the current systems providing support to family caregivers, including the possibility of expanding or even fundamentally changing eligibility considerations. For example, a 2016 national report recommends strengthening the capacity of healthcare and social services providers to identify caregivers and help them access services in the communities, which may play a key role in filling gaps for vulnerable caregivers (National Academies of Sciences Engineering and Medicine, 2016). Improving coordination across health, public health, and service sectors may reduce some of the navigation and access barriers caregivers experience and facilitate sustainable networks of support for caregivers across sectors (Bangerter, Fadel, Riffin, & Splaine, 2019). Federal policymakers also have the opportunity to learn from and reinforce the diverse and innovative efforts to support caregivers that are emerging at the state level (Aufill, Burgdorf, & Wolff, 2019; Dawson, Bangerter, & Splaine, 2020) and internationally (Gardiner et al., 2019; Mehri, Kinney, Brown, & Rajabi Rostami, 2019). Understanding the implications of eligibility is a first step in ensuring that caregivers with the highest need, regardless of age or condition criteria, have access to and make appropriate use of support services. Thoughtfully addressing these complex issues is crucial to maintaining the health, well-being and resilience of the caregiving population.