Correlates of formal support service use among dementia caregivers

Abstract

Informal caregivers for persons with dementia frequently report needing assistance, yet formal support service use has been low. To better understand factors associated with service use, correlates of self-reported service use (e.g. support groups, family mediation, family leave, classes/trainings, and respite care) among dementia caregivers were assessed. The National Poll on Healthy Aging conducted a nationally representative web-based survey of adults aged 50–80 (N=2,131) using Ispos’ KnowledgePanel®; 148 reported caregiving for an adult with memory loss [61.5% female; 25% non-White, 54.1% aged 50–64]. Multivariable logistic regression analyses assessed caregiver and care recipient characteristics associated with service use within the prior year. Nearly 25% of caregivers used at least one service. Caregiver characteristics associated with greater likelihood of service use included not working [7.5 OR; 2.73, 20.62 CI]; income <$30,000/year [5.9 OR; 1.57, 27.17 CI]; and residing in Western U.S. [7.0 OR; 1.23, 40.22 CI]. Ability of care recipient to be left alone safely for only three hours or less [5.1 OR; 1.66, 15.46 CI] was associated with greater likelihood of use. Support service use remains low. Findings suggest need to consider caregivers’ employment status, income, and geographical location in service design and implementation.

Introduction

Alzheimer’s disease and related dementias (ADRD) represent a growing public health concern. In the United States (U.S.), an estimated 5 million individuals aged 65 and older are living with ADRD (Matthews et al., 2019). Despite a decreasing ADRD prevalence, longer life expectancy and an increase in the elderly population are projected to lead to an increase in the number of individuals living with dementia by nearly 3-fold by 2050, to between 13.8 to 16 million (Matthews et al., 2019; Langa et al., 2017).

Most persons with dementia (PWD) reside at home, with the majority relying on supportive care from family members (Lepore, Ferrell & Wiener, 2017). These informal caregivers play a critical role in providing support across a range of activities such as transportation, managing appointments, and medical decision making (Wolff, Spillman, Freedman & Kasper, 2016; Alwin, Oberg & Krevers, 2009). While many informal caregivers report positive aspects of caring for a PWD (Lloyd, Patterson & Muers, 2016), caregiving demands and the resulting burden are profound and often result in negative physical and psychological health outcomes, and both direct (e.g., medications) and indirect (e.g., loss of earnings) financial costs (Brown & Chen, 2008; Alwin et al., 2009).

Formal support services, programs, and policies such as support groups, counseling, respite care, adult day programs and employment leave policies (e.g., Family Medical Leave Act) assist informal caregivers in supporting PWD and support caregivers themselves. Several studies have examined factors affecting service use by dementia caregivers, with findings consistently suggesting that many services can be effective and helpful (Wolff, et al., 2016), and the need for services is high. However, the use of support services has consistently been low (Brodaty, Thomson, Thompson & Fine, 2005; Brown & Chen, 2008; Toseland, McCallion, Gerber & Banks, 2002) due to several factors such as lack of awareness, perceived lack of benefit, and barriers to access (Chen, 2014; Wolff et al., 2016; Brodaty et al., 2005).

Andersen’s Behavioral Model of Health Services Utilization (1995), the most extensively used framework to understand formal service use (Babitsch, Gohl & von Lengerke, 2012), is important for assessing the use of support services among dementia caregivers. This model proposes that use of formal services can be predicted by an individual’s predisposing (e.g. demographics), enabling (e.g. facilitators and barriers to use), and need factors that represent both actual and perceived need for services.

Prior studies have examined caregiver and care recipient factors associated with support service use among dementia caregivers, with some having integrated variations of Andersen’s Model of Health Services Use (Andersen, 1995) to predict use of services (Martindale-Adams, Nichols, Zuber, Burns, & Graney, 2015; Toseland et al., 2002; Hong, Hasche & Lee, 2011). Among studies assessing caregiver factors associated with support service use, most have assessed factors aligning with Andersen’s predisposing (e.g. age, gender, race, education, and relationship of the caregiver to the person with dementia), enabling (employment status, income) and need (self-reported stress) factors. Need factors of care recipients (e.g. severity of dementia) have also been investigated (Brown & Chen, 2008; Toseland et al., 2002; Brodaty et al., 2005). Yet the majority of prior studies have focused on one or two individual support service types rather than examining support service use more broadly. Additionally, most prior studies have used non-representative samples, limiting our understanding of which factors are critical to predicting formal service use. Further, prior studies have examined differences in the use and cost of support services among informal caregivers and care recipients living in rural versus urban areas (Innes, Morgan & Kostineuk, 2011; Harrow, Mahoney, Mendelsohn, Ory, Coon, Belle et al., 2004). However, to our knowledge, no prior studies have assessed geographic variation in service use among informal dementia caregivers across the U.S., despite previous work suggesting there is a distinctive geography of health and supportive service use.

As the number of informal caregivers for persons with dementia is expected to substantially increase within the next thirty years (Matthews et al., 2019; Langa et al., 2017), understanding factors that affect support service use is critical to inform service providers and policymakers. To help address these gaps in the literature, the current study examines a wide range of factors to predict service use in a nationally representative sample of dementia caregivers. Based on prior work, it was hypothesized that enabling and need factors would better predict dementia caregiver formal service use compared to predisposing factors. Specifically, being unemployed and having higher total household income (Martindale-Adams et al., 2015; Hong et al., 2011; Hong, 2009), would be associated with greater likelihood of having sought formal services. Additionally, it was hypothesized that region of residence would influence service use (Harrow et al., 2004), and that caregiver perception of how long the person with dementia can be left alone safely (Eichler, Hoffmann, Hertel, Richter, Wucherer, Michalowsky et al., 2016) would better predict service use than the caregiver’s rating of the severity of dementia.

Materials and Methods

Study Design and Procedures

The National Poll on Healthy Aging (NPHA) is a recurring nationally representative survey of people age 50–80. The survey was developed by the Institute for Healthcare Policy & Innovation at the University of Michigan, and is administered online by Ispos LLC (formerly GfK Custom Research) using their KnowledgePanel®, the largest national, probability-based panel in the U.S. Panel members are randomly recruited through probability-based sampling using Address Based Sampling (ABS) methodology via the Delivery Sequence File (DSF) of the United States Postal Service (USPS). To ensure adequate representation of the U.S. adult population, hard-to-reach adults – such as those without internet access, as well using a broad set of geodemographic indicators. Under the ABS recruitment, households without internet connection are provided with a web-enabled device and free internet service.

This survey was administered online in English to a randomly selected and stratified sample of adults aged 50–80. Data was collected from April 1–16, 2017 with three email reminders sent to non-responders to enhance survey response rate. The overall survey completion rate was 77% among panel members contacted to participate (2,131/2,762).

Participants

Data for the current study were drawn from the NPHA. From the original sample of 2,131 respondents, respondents who did not identify as being a caregiver for one or more adults age 65 or older with memory problems (n=1,977) and those who reported caregiving as their paid profession (n=6) were excluded. The final sample consisted of N=148 adults aged 50–80 years who reported serving as a non-paid caregiver for an adult aged 65 or older with memory loss such as Alzheimer’s disease or related dementias who were both institutionalized (17%) and non-institutionalized (83%).

Measures

The NPHA module on caregiving included 22 unique items covering the following caregiver and care recipient predisposing, enabling and need domains: respondent (caregiver) relationship to care recipient, severity of memory loss, care recipients’ health, care provided, impact of caregiving on the respondent including rewards and stresses, and utilization of formal support services.

Caregiver (sample) characteristics

Some predisposing caregiver characteristics (relationship to care recipient: spouse, parent/in-law, other relative, friend/neighbor, other), were ascertained through self-report on the survey, while others (age, gender (male/female), race (white non-Hispanic, black non-Hispanic, other non-Hispanic, Hispanic, 2+ races) were obtained from the vendor. Three enabling factors were included in this study: employment status, geographical region of residence within the U.S., and total household income. Employment status was obtained through self-report on the survey, while income and geographical region of residence (i.e., Northeast, South, Midwest, or West per U.S. Census Bureau definitions) were obtained through the vendor. Reflective of caregiver need, respondents indicated their health status on a 5-point likert scale (1 = excellent, 5 = poor) as well as the degree to which caregiving was stressful for them on a 3-point likert scale (1 = not stressful, 2 = somewhat stressful, 3 = very stressful).

For analyses, age, employment status and caregiver stress were dichotomized (age: 50–64/65–80; employment: working/not working; stress: not stressful/somewhat or very stressful). Race/ethnicity, income, caregiver health status and relationship to care recipient survey items were each collapsed into three categories: race: non-Hispanic white, non-Hispanic non-white (black non-Hispanic, other non-Hispanic and 2+ races) and Hispanic; annual household income (less than $30,000, $30-$59,999, $60k+); health status: excellent/very good, good, fair/poor; relationship to care recipient (spouse, parent/in-law, friend/neighbor/other relative).

Care recipient characteristics

Caregivers were asked to indicate the severity of memory loss in the PWD (1 = mild, 2 = moderate, 3 = severe), whether they assisted with at least one activity of daily living (ADL) and instrumental activity of daily living (IADL) (0 = no, 1 = yes), whether the PWD needed assistance with another health condition unrelated to memory loss (0 = no, 1 = yes), as well as the length of time the PWD could be safely left alone (1= less than 10 minutes to 5 = a day or more), with scores ultimately dichotomized to 3 hours or less vs. more than 3 hours.

Caregiver service use

Caregivers were asked about their use of five different support services: support groups, family counseling/mediation, classes/education/training, family leave, and respite care. They were asked which of these support services they had used in the prior year (0 = no, 1 = yes), as well as which services they would like to use.

Data Analysis

Two main analytic steps were employed. First, summary statistics (percentage) of caregiver and care recipient variables were calculated. Survey weights provided by the vendor (Weight1 for ages 50–80) were used to calculate proportions. To better understand correlates of support service use among informal dementia caregivers, a multivariable logistic regression analysis was conducted. For the logistic regression with service use in the prior year as the outcome variable, a dichotomous variable was created based on whether or not the respondent had endorsed using any of the five aforementioned services. Ten caregiver and care recipient predictor variables were included in the model; these included predisposing (e.g. age, gender, race), enabling (household income, employment status, region of U.S. residence) and need factors (e.g. self-report of caregiving stress, care recipients’ (PWD) severity of memory loss, amount of time the PWD can be left safely alone, presence of other health conditions among PWD, whether ADL and IADL assistance was provided). For comparison, unadjusted estimates for each of the ten different caregiver and care recipient characteristics were obtained for later use in the adjusted model. Additionally, a second multivariable logistic regression using the same ten predictor variables was conducted to better understand the likelihood of interest in using support services among a sub-sample of caregivers who reported not using any service during the prior year. Analyses were performed using statistical software package Stata version 15.1.

Results

Table 1 shows the respondent (caregiver) and care recipient predisposing, enabling and need factors by the number of individual responses and weighted proportion. Respondents were represented across all four regions of the U.S. (West, Midwest, South, Northeast), and the majority were aged 50–64 (66.5%), women (60.8%), non-Hispanic White (69.9%), and had a mean household income of $60,000 or more (59.7%). The majority of respondents reported their health as excellent, very good, or good (78.5%); found caregiving to be rewarding (85%); and indicated caregiving was stressful (77%).

Table 1.

Sample (caregiver) characteristics and caregiver-reported characteristics of care recipients with memory loss by use of services in past year (N=148)

	Caregivers used services n (%*)	Caregivers did not use services n (%*)
Caregiver Characteristics
Predisposing Factors
Age
50–64	20 (15.3)	58 (51.2)
65–80	16 (7.5)	52 (26.0)
Gender
Female	21 (12.8)	68 (48.0)
Male	15 (10.1)	42 (29.1)
Race and ethnicity
White, NH	27 (17.6)	82 (52.3)
Black, NH	2 (1.2)	12 (11.5)
Other, NH	0 (0.0)	2 (3.4)
Hispanic	5 (3.7)	12 (9.7)
2+ races	2 (0.4)	2 (0.2)
Relationship to care recipient
Adult child/child in-laws	20 (12.8)	58 (46.9)
Spouse	9 (5.1)	26 (13.9)
Friend/neighbor/other relative	7 (4.9)	26 (16.4)
Education Status
Less than high school	3 (2.5)	8 (9.4)
High school or less	5 (3.8)	30 (20.2)
Some college	18 (11.2)	37 (22.0)
Bachelor’s degree or more	10 (5.4)	35 (25.5)
Enabling Factors
Total household income
Less than $30,000	8 (5.8)	12 (9.9)
$30,000-$59,999	8 (4.8)	28 (19.8)
$60,000 or more	20 (12.3)	70 (47.4)
Employment status
Working	10 (6.5)	60 (46.3)
Not working (retired/disabled/other)	26 (16.3)	50 (30.9)
Region of U.S. residence
South	12 (7.5)	43 (33.0)
Northeast	8 (5.1)	27 (20.3)
Midwest	7 (4.4)	24 (14.1)
West	9 (5.8)	16 (9.8)
Need Factors
Health Status
Excellent or very good	17 (10.8)	46 (29.2)
Good	8 (5.2)	43 (33.3)
Fair or poor	11 (6.9)	21 (14.6)
Is caregiving stressful
No	6 (4.7)	29 (17.7)
Somewhat or very	30 (18.2)	81 (59.4)
Care Recipient Characteristics
Need Factors
Severity of Memory Loss
Mild	15 (9.3)	54 (37.9)
Moderate	14 (8.8)	40 (27.8)
Severe	7 (4.8)	15 (11.4)
Length of time safely left alone
3 hours or less	24 (15.2)	42 (29.5)
More than 3 hours	12 (7.6)	68 (47.7)
Has other health condition
Yes	20 (13.2)	68 (49.0)
No	15 (9.1)	42 (28.7)
Type of care received by caregiver:
Assistance with ADLs
Yes	14 (9.7)	31 (20.7)
No	21 (13.1)	76 (56.5)
Assistance with IADLs
Yes	34 (21.4)	100 (70.4)
No	2 (1.5)	10 (6.7)

Abbreviations: NH, Non-Hispanic; U.S., United States

NOTE:

^*Based on survey weights

NOTE: N=146 to N=148 due to missing values

Regarding care recipient characteristics, nearly half of the persons with dementia being cared for by respondents in this study had mild memory loss (47.2%), 36.6% had moderate memory loss, and 16.2% had severe memory loss. Most persons with memory loss had another health condition (62.2%) and nearly one-third (30%) of caregivers provided support with activities of daily living (ADLs) such as bathing, toileting, dressing or eating. Most caregivers (91.8%) reported they provided assistance with at least one instrumental activity of daily living (IADL) such as shopping, managing finances, and providing transportation.

Among caregivers who used at least one service in the prior year, the majority were non-Hispanic White (75%) and female (58.3%); and over 71% were not working compared to just under half of all caregivers who were not working (47.2%). The majority were caring for someone with dementia who could be left safely alone for only 3 hours or less (66.7%) compared to slightly under half of all caregivers (44.7%).

Table 2 examines reported service use among caregivers within the past year. Nearly 23% of caregivers used at least one service within the past year. Among these, 43% of caregivers used 2 or more services (10% of total sample). The most commonly utilized support service was family mediation/therapy (10.2%), followed by classes, trainings or conferences (9.7%). Family leave was the service used least (3.5% among working caregivers) and caregivers also reported the least interest in using it. In all, 29.5% of caregivers who did not use a service in the past year expressed interest in future use.

Table 2:

Caregivers’ use of formal support services in past year and interest in using formal support services (N=146)

	Have used in past year	Have not used, and would like to	Have not used, and not interested
Type of Service, No. individuals (%*)
Support groups	14 (8.7)	18 (15.3)	113 (76.0)
Family mediation or family therapy	14 (10.2)	18 (14.5)	114 (75.3)
Classes, training or conferences	16 (9.7)	26 (19.4)	104 (70.1)
Respite care	9 (7.0)	26 (19.8)	109 (73.2)
Family leave	8 (5.3)	16 (12.9)	121 (81.8)
Currently working	3 (3.5)	10 (17.5)	56 (79.0)
Use of at least 1 service, No. individuals (%*)	36 (22.9)	40 (29.5)	70 (47.7)

Note: N=144 to N=146 due to missing values

^*Based on survey weights

Table 3 displays the unadjusted and adjusted logistic model outputs by caregiver and care recipient predisposing, enabling and need factors for self-reported use of support services among caregivers within the past year. There were statistically significant caregiver enabling variables and care recipient need variables predicting use of support services. Among caregiver enabling factors, the strongest predictor of service use was employment status, with non-working caregivers significantly more likely than their working counterparts to have used services (OR = 7.50; 95% CI 2.73, 20.62). Caregiver household income was also correlated with support service use, with those reporting incomes of less than $30,000 much more likely than those with income >$60,000 to report having used services in the prior year (OR = 5.86, 95% CI 1.27, 27.17). Another enabling factor associated with support service use was the geographical region in which the caregiver resided, with those in the Western US being most likely to report service use (OR = 7.07, 95% CI 1.23, 40.22). Caregiver predisposing characteristics including age, gender, and race, in addition to the caregiver need factor of perceived caregiving stress, were not significantly associated with service use. Among care recipient characteristics, caregivers who reported that the care recipient could only be safely left alone for 3 hours or less were more likely to use services than caregivers who said the PWD could safely be at home for longer periods of time (OR = 5.07; 95% CI 1.66, 15.46). Caregiver-reported severity of memory loss and presence of other health conditions were not significant correlates of service use.

Table 3:

Adjusted and unadjusted likelihood of the use of formal support services (N=146)

	Unadjusted OR (95% CI)	Adjusted ORa (95% CI)
Caregiver characteristics
Predisposing Factors
Age
50–64	1.04 (0.47, 2.30) 1.00	2.07 (0.76, 5.65) 1.00
65–80
Gender
Female	0.77 (0.34, 1.74)	0.53 (0.18, 1.56)
Male	1.00	1.00
Race and ethnicity
Non-white, NH	0.30 (0.08, 1.18)	0.20 (0.03, 1.43)
Hispanic	1.14 (0.35, 3.69)	0.30 (0.05, 1.68)
White, NH	1.00	1.00
Enabling Factors
Total household income
Less than $30,000	2.26 (0.77, 6.66)	5.86* (1.57, 27.17)
$30,000-$59,999	0.92 (0.35, 2.44)	0.98 (0.29, 3.38)
$60,000 or more	1.00	1.00
Employment status
Not working	3.76 (1.58, 8.96)	7.50*** (2.73, 20.62)
Working	1.00	1.00
Region of U.S. residence
West	1.88 (0.54, 6.57)	7.04* (1.23, 40.22)
South	0.73 (0.24, 2.20)	2.94 (0.83, 10.47)
Northeast	0.80 (0.24, 2.69)	1.46 (0.39, 5.37)
Midwest	1.00	1.00
Need Factors
Is caregiving stressful
Somewhat or Very	1.15 (0.42, 3.17)	1.78 (0.45, 7.07)
Not at all	1.00	1.00
Care recipient characteristics
Need Factors
Stage of memory loss
Severe	1.73 (0.56, 5.35)	0.58 (0.10, 3.34)
Moderate	1.29 (0.53, 3.13)	0.62 (0.21, 1.85)
Mild	1.00	1.00
Amount of time safe alone
3 hours or less	3.21 (1.38, 7.47)	5.07*** (1.66, 15.46)
Most of day or more	1.00	1.00
Has another health condition
Yes	0.84 (0.37, 1.91)	0.41 (0.14, 1.19)
No	1.00	1.00

Abbreviations: NH, Non-Hispanic; U.S., United States; OR, Odds Ratio;

^a,Adjusted value for listed covariates

NOTE: N=146 due to missing values; All estimates based on survey weights

NOTE: Items in bold and have

^*p-value ≤.05; Items in bold with

^***have p-value ≤.005;

Table 4 displays the unadjusted and adjusted logistic model outputs by caregiver and care recipient predisposing, enabling and need factors for interest in using formal support services among caregivers who reported not using any support service during the past year. There were also statistically significant caregiver enabling and care recipient need factors predicting interest in using formal support services. Having an annual household income of less than $30,000 was significantly associated with decreased interest in using services (OR = 0.27; 95% CI 0.08, 0.93; p<.05). Among care recipient characteristics, providing support for persons with moderate dementia compared to mild or severe dementia was correlated with increased interest in using support services among caregivers (OR = 3.22; 95% CI 1.05, 9.89; p<.05).

Table 4:

Adjusted and unadjusted likelihood of the interest in using formal support services among caregivers who did not use services in the prior year (N=109)

	Unadjusted OR (95% CI)	Adjusted ORa (95% CI)
Caregiver characteristics
Predisposing Factors
Age
50–64	2.00 (0.86, 4.67)	0.98 (0.56, 5.50)
65–80	1.00	1.00
Gender
Female	1.13 (0.48, 2.67)	1.76 (0.33, 2.70)
Male	1.00	1.00
Race and ethnicity
Non-white, NH	2.55 (0.77, 8.39)	2.82 (0.84, 9.50)
Hispanic	2.48 (0.69, 8.95)	4.06 (0.77, 21.25)
White, NH	1.00	1.00
Enabling Factors
Total household income
Less than $30,000	0.40 (0.14, 1.18)	0.27* (0.08, 0.93)
$30,000-$59,999	0.55 (0.14, 2.12)	0.22 (0.03, 1.57)
$60,000 or more	1.00	1.00
Employment status
Not working	0.58 (0.24, 1.41)	0.88 (0.32, 2.44)
Working	1.00	1.00
Region of U.S. residence
West	2.66 (0.56, 12.74)	2.12 (0.43, 10.58)
South	1.67 (0.50, 5.61)	0.96 (0.26, 3.63)
Northeast	4.14* (1.16, 14.67)	3.19 (0.67, 15.27)
Midwest	1.00	1.00
Need Factors
Is caregiving stressful
Somewhat or Very	1.62 (0.60, 4.33)	1.65 (0.46, 5.92)
Not at all	1.00	1.00
Care recipient characteristics
Need Factors
Stage of memory loss
Severe	1.53 (0.39, 6.05)	1.76 (0.32, 9.65)
Moderate	2.41 (0.96, 6.07)	3.22* (1.05, 9.89)
Mild	1.00	1.00
Amount of time safe alone
3 hours or less	0.88 (0.36, 2.11)	0.63 (0.22, 1.84)
Most of day or more	1.00	1.00
Has another health condition
Yes	0.55 (0.23, 1.31)	0.57 (0.20, 1.64)
No	1.00	1.00

Abbreviations: NH, Non-Hispanic; U.S., United States; OR, Odds Ratio;

^a,Adjusted value for listed covariates

NOTE: N=109 due to 1 missing value; All estimates based on survey weights

NOTE: Items in bold and have

^*p-value ≤.05

Discussion

To our knowledge, this is the first study to examine dementia caregivers’ use of a wide range of support services among a nationally representative sample of older adults. The results lend support to the hypotheses that certain enabling characteristics of caregivers (e.g. employment status, income, place of residence) and need characteristics of care recipients (e.g. time left safely alone) are more significant than other predisposing (e.g. age, gender, race) and need factors (reported stress) in predicting service use.

Consistent with prior research on service use among dementia caregivers, enabling factors (e.g. income and employment status) were significant indicators of service use (Toseland et al., 2002). Specifically, it was found that not working was significantly associated with greater use of services (Martindale-Adams et al., 2015). Caregivers who are not working may have increased needs due to their own disability, disease or other impairments, suggesting increased need for support from formal services. Another explanation includes having more time to use available services than those who are balancing work and caregiving responsibilities (Martindale-Adams et al., 2015).

Contrary to prior findings suggesting that higher income predicts increased use of support services, results of this study show that lower annual household income (less than $30,000) was highly correlated with service use. One reason for this discrepancy may be that our study assessed service use using a composite variable of five distinct services (e.g. respite care, support groups, family mediation, family leave, classes/trainings), and some services may be offered at no or low cost (e.g. support groups, classes/trainings). Further, free or subsidized services may be more accessible to caregivers with lower income, leaving lower income households more likely to use services compared to caregivers with middle household income who may not qualify for subsidized services and are unable to afford them. This finding suggests that lower income is not necessarily a barrier to support service use.

Consistent with prior research, predisposing factors (age, gender, race) were less likely to predict formal service use among dementia caregivers. Findings from this study suggest that Hispanic caregivers and non-white non-Hispanic caregivers were less likely to use services compared to white non-Hispanic caregivers (Montgomery, Marquis, Schaefer & Koloski, 2002), although the difference was not statistically significant due to a limited sample size. Some may seek different services or more informal rather than formal support due to family preferences and cultural norms (Hong, 2009). With increasing ethnic and racial diversity in the U.S., additional research is necessary to understand any service use barriers among diverse caregiver populations.

Stress, a factor commonly examined in the caregiving service use literature, has shown different effects, likely due to variations in study design and how this variable has been operationalized in studies. Some previous studies found stress to be moderately associated with increased use of services designed to relieve psychosocial burden (Martindale-Adams, et al., 2015), whereas others found that increased stress was associated with decreased use of respite care and day programs (Phillipson et al., 2013). This study did not find self-reported caregiver stress to be significantly associated with service use. Instead, caregivers’ perceptions of how long the PWD could be safely left alone (three hours or less) was significantly more predictive of service use. A possible explanation for this is that the amount of time a PWD can be left alone safely may be more indicative of the level of dependency a person with dementia has, compared with other care recipient factors such as severity of memory loss and presence of other health conditions. This underscores that there may be differences in needs of PWD that may not be congruent across individuals in similar stages of disease progression.

Focusing on caregiver geographic residence, a factor important to understanding service use that has not previously been assessed in studies on formal service use among dementia caregivers, evidence of geographic variation in service use was found, with caregivers most likely to use services if living in the West. The geographic regions examined, as defined in accordance with the U.S. Census Bureau, have historical, climate and other differences such as availability and cost of services (Innes et al., 2011; Harrow et al., 2004). The increased likelihood of service use in regions compared to the Midwest, which was used as the reference group, may suggest variation in availability of services and providers, regional preferences, or cultural values (Harrow et al., 2004). Research also suggests variation in community service referrals by healthcare providers (Fortinsky et al., 2009), with more recently trained providers more likely to provide referrals to services and resources (Connell & Gallant, 1996). Further work is necessary to understand why regional differences may occur and to provide finer-grained analyses of place and service use.

This study also focused on interest in future use of formal support services among nonusers. Findings suggested decreased interest among caregivers with annual household income less than $30,000 and an increased interest among those who care for PWD with moderate dementia. Some possible explanations for lower interest in using formal support services among persons with an annual household income of less than $30,000 may include perceived barriers to formal service use, perceived lack of need, use of supports such as friends or family, or having poor prior experiences using services. Prior research found that caregiver lack of knowledge and care recipient reluctance to use and receive support services influenced caregiver service nonuse (Brodaty et al., 2005), and could also explain decreased interest in using. Higher interest in using support services among those who care for PWD with moderate dementia may be a result of increased perceived need for support as the care recipients’ dementia worsens or lack of confidence in providing more intense levels of care.

Study limitations and Future Research

This is one of the few studies to include a diverse and representative sample of dementia caregivers. However, this study has limitations that should be considered. The total sample size (N=148) was relatively small, limiting the power to detect certain differences among subgroups. Additionally, use of a composite variable spanning five services did not allow for identification of factors associated with use of specific service types. This study also assessed service use in the past year, so it is possible that some caregivers may have used these services in the more distant past, or that services such as classes/trainings have an ongoing positive impact on caregivers. Additionally, although the completion rate was relatively high, it is possible that those caregivers who did not participate in the study may be different than those who did.

To replicate these findings and build our understanding of factors that influence use of formal support services, more research is needed from large and diverse representative samples. Additionally, while this study examined caregiver and care recipient characteristics informed by Andersen’s Model of Health Services Use (Andersen, 1995), greater integration of this or related theoretical frameworks could inform the design and interpretation of future research.

In addition, while service use was low (and is consistent overall with prior studies), a significant proportion of caregivers indicated interest in using one or more services. While some studies have been conducted regarding nonuse of services among caregivers of persons with dementia (Brodaty et al., 2005; Brown & Chen, 2008), future research should be devoted to service nonuse and potential barriers and facilitators of use, in addition to understanding factors associated with service use.

Implications for practice and policy

Prior research has emphasized that use of services earlier in the dementia caregiving experience are likely to produce greater and more long-term benefits to both the caregiver and PWD (Gaugler, Kane, Kane & Newcomer, 2005). However, to promote earlier use of services and to achieve better long-term caregiver and care recipient outcomes, understanding who is more likely (and less likely) to use support services is critical. This is particularly timely given the expected increase in the number of individuals affected by dementia and dementia caregivers (Langa et al., 2017; Matthews et al., 2019).

In this study, caregivers with lower income and who are not working were significantly more likely to use formal support services. Some services may be subsidized and more readily available to caregivers with lower incomes, leading to increased likelihood of use. While lower income may not always be a deterrent to use of supportive services, this finding should not obscure the need to continue to promote subsidized services, especially those that are typically higher cost (e.g. respite care), thereby encouraging use among caregivers regardless of level of income. Additionally, this study underscores the critical importance in identifying caregivers who are working to further extend access to needed services. However, individuals who are working may have less time to identify services, let alone seek them out and utilize them. It is therefore important to promote supportive services to working caregivers and to also assess and address potential barriers of service use they may face.

Family leave was the least used service and caregivers had the least interest in using this service. Given family leave is tied to employment and may be available only to some employed caregivers, the limited use may be tied to few respondents being eligible for this type of service. Other possible explanations for lower use of and interest in use of family leave may be attributed to lack of knowledge about family leave available, intentional delay in use of family leave with the anticipation of the PWD needing additional care later in the disease trajectory, or concern about workplace consequences if family leave were used. Additionally, many family leave policies support only unpaid time off, and the loss of income may not be financially feasible for many caregivers. Addressing these concerns could lead to increased use of this type of important service.

Conclusion

As the nation prepares for a significant increase in the number of persons affected by Alzheimer’s disease and related dementias and informal caregivers to support them, it is critical to continue to assess support services that are helpful for and used by caregivers, in addition to potential barriers and facilitators of service use. This study provides further direction about the influence of certain caregiver and care recipient characteristics and their significance, or lack thereof, in explaining current use and highlights areas where programs and policies can help to meet the needs of caregivers of persons with dementia.