Informal Caregiver Disability and Access to Preventive Care in Care Recipients Joshua M. Thorpe, PhD, MPH, Carolyn T. Thorpe, PhD, MPH, Richard Schulz, PhD, Courtney H. Van Houtven, PhD, Loren Schleiden, BS Introduction: Many informal caregivers of dependent midlife and older adults suffer from their own functional limitations. The impact of caregiver functional limitations on care recipient receipt of preventive services is unknown. The purpose of this study is to examine the association between caregiver functional limitations and decreased access to recommended preventive services in dependent care recipients. Methods: Dependent adults (those receiving assistance with activities of daily living or instrumental activities of daily living) and their primary informal caregiver were identified from pooled alternate years (2000–2008) of the nationally representative Medical Expenditure Panel Survey (data analyzed February–October 2014). The impact of caregiver limitations (cognitive, mobility, sensory, emotional health) on care recipient’s receipt of up to seven different preventive services was assessed via survey-weighted linear and logistic regression.
Results: Of the 5-year weighted estimate of 14.2 million caregiver–care recipient dyads, 38.0% of caregivers reported at least one functional limitation. The percentage of recommended preventive services received by care recipients was significantly lower if the caregiver had cognitive, mobility, or emotional health limitations. Each type of caregiver functional limitation was negatively associated with at least four different preventive services. Conclusions: Informal caregivers burdened by their own functional impairments may face challenges in facilitating access to preventive care in dependent midlife and older adults. Policies and interventions designed to prevent or mitigate the impact of caregiver functional impairments are critical to the success of community-based models of care for dependent adults. (Am J Prev Med 2015;49(3):370–379) & 2015 American Journal of Preventive Medicine
Introduction
T
he number of older adults in the U.S. is projected to double by 2030, bringing large increases in the number of people with disabilities living in the community.1 Recognizing these trends, there is great interest among policymakers and public health From the Veterans Affairs Pittsburgh Healthcare System and the Center for Health Equity Research and Promotion (J.M. Thorpe, C.T. Thorpe); Department of Pharmacy and Therapeutics (J.M. Thorpe, C.T. Thorpe, Schleiden), University of Pittsburgh School of Pharmacy; Department of Psychiatry (Schulz), University of Pittsburgh School of Medicine; University Center for Social and Urban Research (Schulz), University of Pittsburgh, Pittsburgh, Pennsylvania; Center for Health Services Research in Primary Care (Van Houtven), Durham Veterans Affairs Medical Center; and the Division of General Internal Medicine (Van Houtven), School of Medicine, Duke University Medical Center, Durham, North Carolina Address correspondence to: Joshua M. Thorpe, PhD, MPH, University of Pittsburgh School of Pharmacy, 916 Salk Hall, 3501 Terrace Street, Pittsburgh PA 15261. E-mail: [email protected]. 0749-3797/$36.00 http://dx.doi.org/10.1016/j.amepre.2015.02.003
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organizations in assisting individuals with disabilities to remain in the community as they age.2 The high risk of institutionalization for those with disabilities poses a major challenge to these efforts.3–5 Furthermore, people with disabilities are at greater risk for developing new illnesses, suffering from secondary disease-related complications, and experiencing rapid functional decline.4,5 Therefore, timely access to clinical preventive services is particularly important to delay or prevent the need for more expensive institutional care.6 Unfortunately, adults with disabilities have lower preventive care utilization rates compared to the general population.4,7,8 A better understanding of the underlying reasons for lower utilization rates is critical to the success of aging-inplace policies and interventions. Most long-term care (LTC) of adults with disabilities in the U.S. occurs in the community, and nearly 80% of community-based LTC is provided exclusively by informal (unpaid) caregivers.9 Informal caregivers often assist
& 2015 American Journal of Preventive Medicine
Published by Elsevier Inc.
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with a range of day-to-day activities, including supporting the medical care needs of the care recipient.10–12 Although prior research has documented other aspects of the caregiving role, to our knowledge, only two studies examined the role caregivers play in facilitating access to preventive care.13,14 Further research in this area is important for two main reasons: (1) the negative effects of caregiving on caregiver health are well known15,16; and (2) one’s own poor health and disabilities are known to negatively impact adherence to recommended medical care.8,17–19 Caregivers burdened by their own impairments may find it difficult to facilitate access to care in dependent older adults. Previous research, for example, has linked caregiver depression to lower influenza vaccination rates in dependent older adults.20 However, this study focused on dementia caregivers, examined only one preventive service, and was limited to veterans. Jamoom et al.14 studied a broader set of informal caregivers and preventive services and found mixed results on the impact of the presence of a caregiver in facilitating access. However, data on caregiver health and functional impairments were not assessed. The primary goal of this study is to test the hypothesis that caregiver functional limitations are associated with decreased receipt of clinical preventive services among care recipients in a nationally representative sample of dependent midlife and older adults. A secondary goal is to evaluate the overall impact of caregiver factors on receipt of preventive services.
Methods Data Source The sample was drawn from pooled alternate years of the 2000– 2008 Medical Expenditure Panel Surveys (MEPS; data analyzed in February–October 2014). MEPS is a longitudinal survey of U.S. households conducted to provide nationally representative estimates of healthcare use and expenditures for the noninstitutionalized civilian population.21 MEPS asks the household member most knowledgeable about the health and healthcare use of all household members to be the primary respondent for five interviews conducted over 2 years. This study was deemed exempt by the University of Pittsburgh IRB.
Study Sample The sample was limited to midlife and older adults (aged Z50 years) who received assistance for a disability (N¼1,765). Specifically, the sample was subset to households where the primary household respondent reported that a midlife/older adult household member received help or supervision with at least one activity of daily living (ADL) or at least one instrumental activity of daily living (IADL). September 2015
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Next, the sample was restricted to dependent midlife/older adults (henceforth, care recipients) where the primary respondent was likely serving as the primary caregiver. MEPS does not include a caregiver indicator variable—rather, caregiver status is inferred from other available information. Specifically, the primary MEPS respondent was considered an informal caregiver if he or she (1) co-resided with a dependent care recipient as defined above; (2) received no assistance for disabilities of his or her own; and (3) reported that no assistance was provided to care recipients from formal (paid) or other informal caregivers outside the household. These criteria represent a balance between increased internal validity that may be achieved by more restrictive definitions and increased generalizability to the range of caregiving situations across the U.S. that may be achieved by less restrictive definitions. Sensitivity analyses (described below) were conducted to evaluate alternative criteria. The final unweighted sample using these criteria comprised 1,327 dyads of community-dwelling care recipients and caregivers (weighted 5-year national estimate, 14,149,701). The robustness of findings to more and less restrictive criteria for identifying informal caregivers was examined, including (1) restricting to households with only two members (responding caregiver and care recipient only); (2) limiting to only spouse caregiver–care recipient dyads; (3) excluding care recipients whose only limitations were in higher-level IADL skills; (4) excluding care recipients whose disability was expected to last o3 months; and (5) including care recipients who received formal in-home care or informal care from others. Results were robust to these alternative criteria, and Appendix Table 1 presents results from analyses limiting to households with only two members.
Measures To measure the dependent variable, clinical preventive services, MEPS respondents were asked to report the time elapsed (o1 year, 1–o2 years, 2–o3 years, 3–5 years, 45 years, never) since last receiving the following specific preventive services: (1) influenza vaccination; (2) routine physical checkup; (3) hypertension screening; (4) cholesterol screening; (5) colorectal cancer screening; (6) routine dental checkup; (7) breast cancer screening, mammography (women only); and (8) prostate cancer screening (men only). Reponses to these questions were used to determine whether each service was obtained according to 2008 U.S. Preventive Services Task Force guidelines.22 Similar to previous studies,23,24 the primary dependent variable is a summary measure reflecting the percentage of age- and sex-appropriate preventive services received. Binary indicators of each preventive service were also analyzed (Table 2 shows unadjusted results; Appendix Table 2 shows adjusted results). Caregiver functional limitations measures were consistent with the “basic actions” functional domains described by Altman and Bernstein.25 Binary indicators of limitations were created in four domains: cognition (confusion or memory loss); mobility (difficulty walking, standing, or bending); sensory (vision and hearing); and emotional health (perceived mental health is fair/poor). Previous work has demonstrated concurrent validity of the MEPS emotional health and cognitive limitation items with the ShortForm 12 Health Survey (SF-12) Mental Component Score,26 and there was a high correlation between mobility impairment and a
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Table 1. Summary Statistics by Caregiver Functional Limitation Status (Unweighted N¼1,327), Alternating Pooled Years: 2000–2008
Study variables Total sample
Overall, weighted
No caregiver limitations
Any caregiver limitations
p-value
14,149,701
8,777,560
5,372,141
—
72.3
72.4
72.1
Patient factors Age (years), mean Age (years), %
0.45
50–64
28.2
28.6
27.6
65–75
20.8
21.4
19.8
Z75
51.0
50.0
52.6
62.9
62.1
64.1
Patient is male, %
0.39
Race/ethnicity, %
0.63 0.10
White, non-Hispanic
81.4
80.9
79.8
Black, non-Hispanic
7.4
7.3
7.6
Hispanic
6.3
6.4
6.2
Other race, non-Hispanic
4.9
5.5
3.8
Education, %
0.23
No high school degree
32.9
29.7
36.4
High school degree only
34.8
37.2
33.9
Some college
32.4
33.1
29.7
Attitudes toward health More likely to take risks than others
1.96
1.89
2.07
o0.01
More able to overcome illness without medical help
1.60
1.56
1.67
o0.01
Patient is employed, %
14.8
14.1
16.1
0.21 o0.01
Household poverty status, % Poor
9.1
7.3
12.1
Near poor
3.8
3.2
4.9
Low income
18.4
17.0
20.6
Middle income
34.0
33.5
34.6
High income
34.6
39.0
27.5 o0.01
Insurance status, % Any private insurance
57.8
60.3
53.7
Public insurance only
38.5
36.6
41.1
Uninsured entire year
3.8
3.2
4.9 o0.05
Region of U.S., % Northeast
17.5
17.6
17.4
Midwest
21.8
23.1
19.7 (continued on next page)
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Table 1. Summary Statistics by Caregiver Functional Limitation Status (Unweighted N¼1,327), Alternating Pooled Years: 2000–2008 (continued) Overall, weighted
No caregiver limitations
Any caregiver limitations
South
37.1
35.7
39.4
West
23.5
23.5
23.5
2.4
2.4
2.3
0.31
22.7
22.7
22.9
0.37
Cognitive
52.8
50.7
56.2
o0.05
Mobility
34.0
32.7
36.0
o0.01
Sensory (vision or hearing)
37.3
33.7
43.2
o0.05
Emotional health
32.6
28.2
39.7
o0.01
2.4
2.4
2.6
o0.01
22.3
25.8
16.4
0.16
67.7
66.9
68.9
o0.01
Study variables
Number of household members Non-metropolitan area, %
p-value
Limitations, %
Number of chronic conditions Any emergency room use during year, % Other caregiver factors Age (years), mean
o0.01
Age (years), % 50–64
41.6
44.0
37.5
65–75
26.2
27.7
23.7
Z75
32.3
28.3
38.8
28.5
26.6
31.7
Caregiver is male, %
0.27 o0.05
Education, % No high school degree
22.3
18.2
28.9
High school degree only
38.0
39.2
36.2
Some college
39.7
42.6
34.9
More likely to take risks than others
2.0
2.1
1.9
o0.05
More able to overcome illness without medical help
1.7
1.8
1.7
o0.05
28.8
34.2
20.0
o0.01
Attitudes toward health
Currently employed, %
o0.01
Insurance status, % Any private insurance
66.9
71.0
60.2
Public insurance only
26.9
22.8
33.5
Uninsured entire year
6.2
6.1
6.3
Cognitive
—
11.7
—
Mobility
—
10.5
—
Sensory (vision or hearing)
—
21.7
Limitations, %
— (continued on next page)
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Table 1. Summary Statistics by Caregiver Functional Limitation Status (Unweighted N¼1,327), Alternating Pooled Years: 2000–2008 (continued)
Study variables
Overall, weighted
No caregiver limitations
Any caregiver limitations
p-value
—
10.8
—
1.5
1.3
1.7
o0.01
16.3
12.9
21.7
o0.01
Emotional health Number of chronic conditions Any emergency room use during year, %
Note: Boldface indicates statistical significance at po0.05.
diagnosis of arthritis in the current sample (polychoric correlation¼0.40). The selection of covariates was guided by a modified version of the Andersen Sociobehavioral Model (SBM) of health services use,27,28 which incorporates both caregiver and care recipient factors to predict care recipient use of preventive services. Predisposing variables are factors that increase the propensity for health service use by care recipients. Enabling variables are factors that facilitate or impede care recipient access to health services and include caregiver functional limitations in this study. Predisposing variables included caregiver and care recipient age (50–64, 65–74, Z75 years); sex; whether or not dyads were married; formal education (no high school degree, high school only, some college); care recipient race/ethnicity (non-Hispanic white, Non-Hispanic black, Hispanic, non-Hispanic other race); attitudes about taking risks as measured by the five-interval Likert item I am more likely to take risks than others (1=disagree strongly to 5=agree strongly); attitudes about the value of medical care as measured by the five-interval Likert item I am able to overcome illness without medical help (1=disagree strongly to 5=agree strongly); total number of chronic conditions; and any versus no emergency room use. Enabling variables included being employed full- or parttime versus unemployed/retired; health insurance status (any private insurance, public insurance only, uninsured entire year); region of the U.S. (Northeast, Midwest, South, West); number of household members; whether the care recipient was expected to need caregiving assistance for Z3 months; and whether the household was located in a Metropolitan Statistical Area.
Statistical Analysis Stata, version 13.1, was used for analyses. Conditional mean imputation was used to reclaim cases with missing data (o10% missing data) to generate a single complete data set.29 Surveyweighted least squares regression was used to estimate the effects of independent variables on the percentage of received preventive services, and Taylor series linearization was used to adjust variance estimates for the MEPS complex sampling design. Surveyweighted logistic regression was used to analyze specific preventive services. Three separate models were estimated to examine factors related to the percentage of preventive care received by care recipients. Variables were entered into the model in three stages: Caregiver functional limitations were entered first, followed by all care
recipient factors, and finally all other caregiver factors to estimate fully adjusted results.
Results Table 1 illustrates the MEPS caregiver and care recipient characteristics overall and by caregiver functional limitation status. Of the 14.2 million caregiver–care recipient dyads in the pooled MEPS sample, 38% of caregivers reported at least one functional limitation and 12% had multiple functional limitations (data not shown). Twelve percent of caregivers reported a cognitive limitation, 10% reported a mobility limitation, 22% reported a vision or hearing limitation, and 11% reported poor or fair mental health. Table 2 presents percentages of care recipient receipt of preventive services by caregiver functional limitation type. The percentage of recommended preventive services that were received was significantly lower if the caregiver had cognitive limitations (–5.3 percentage points [PPs]); mobility limitations (–7.3 PPs); or emotional health limitations (–7.1 PPs). Each caregiver functional limitation was negatively associated with at least four different preventive services. Caregiver functional limitations were not associated with colorectal cancer screening, mammogram receipt, or cervical cancer screening rates. Model 1 in Table 3 presents the results of the unadjusted survey-weighted least squares regression of the percentage of recommended preventive services received by care recipients on caregiver limitation type. With the exception of sensory limitations, all caregiver limitations were negatively associated with care recipient receipt of preventive services. Model 2 presents regression results adjusting for all care recipient covariates. Controlling for care recipient factors, caregiver cognitive limitations were no longer significant. However, the addition of care recipient factors into the model revealed a significant association with caregiver sensory limitations and preventive services. Model 3 presents the fully adjusted regression results including both care recipient www.ajpmonline.org
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Table 2. Percentage of Recommended Preventive Services Received by Care Recipients by Caregiver Functional Limitation (Unweighted N¼1,327), Alternating Pooled Years: 2000–2008 Caregiver cognitive limitation Care Recipient Preventive Care Use
No
% of recommended preventive services received by care recipients
75.2
Influenza vaccination
67.8
**
87.1
**
98.6
**
Cholesterol screenings
95.5
*
Colorectal screenings
59.2
Routine physical checkup Hypertension screenings
Routine dental checkup
31.9
Mammogram (women only)
84.8
Cervical cancer screenings (women only)
73.0
Prostate cancer screenings (men only)
62.6
**
*
Yes
Caregiver mobility limitation No
Yes
Caregiver sensory limitation No
69.9
75.3
**
68.0
74.9
65.9
68.4**
60.3
67.1
72.6
**
96.9
86.1 98.5
92.6
95.5
58.2
59.6
18.1
31.8
75.5
76.6
68.4
73.6
60.1
64.6
79.3 97.6
**
**
**
Yes
Caregiver emotional health limitation No
Yes
73.5
75.3
**
68.2
69.2
68.6**
59.2
**
80.1
86.9
**
73.3
*
97.3
98.5
86.9
98.7
*
92.0
95.8
92.8
95.5
54.4
58.7
60.6
59.0
97.7 *
92.4 59.5
*
16.7
30.2
30.5
31.3
81.2
78.6
73.1
77.8
72.1
61.2
70.8
74.8
70.0
81.9
62.3
62.8
58.6
39.8
**
64.3
21.5
Note: Boldface indicates statistical significance (*po0.05; **po0.01).
and caregiver factors. Even after adjusting for all potential covariates, three of four caregiver functional limitations were independently associated with reduced access to preventive services among care recipients. Joint F-statistics across models revealed that the inclusion of caregiver factors generally (F[17, 1,280]¼ 3.47, po0.001) and caregiver functional limitations specifically (F[4, 1,280]¼4.20, po0.001) improved model fit. Care recipients who had caregivers who were older (aged Z75 years); were their spouses; and had some college-level education (versus high school only) were more likely to receive preventive services. Care recipients who had caregivers with no high school degree; who were currently employed; who had public health insurance only or no insurance (versus private insurance); and who had an emergency room visit in the past year were less likely to receive preventive services.
Discussion Informal caregivers regularly assist with coordinating the health care of care recipients with disabilities, often while coping with their own functional limitations. In this nationally representative sample of informal caregivers, nearly 40% reported at least one functional limitation and 13% reported multiple limitations. Importantly, this September 2015
study is one of the first to directly show that such caregiver limitations are a risk factor for reduced receipt of recommended preventive services in dependent midlife and older adults. Our results showed that care recipients whose caregivers reported functional limitations received a lower percentage of recommended preventive services, with the weighted PP decrease being highest in the presence of caregiver mobility limitations. Given our total 5-year weighted count of 14.2 million dyads, the observed 7.3 PP difference associated with caregiver mobility limitations alone corresponds to 1,032,928 fewer recommended preventive services delivered to dependent adults (4207,000 fewer services per year). Additionally, each caregiver limitation type was negatively associated with at least four different types of preventive services. The finding that caregiver characteristics are associated with care recipient access to health services is consistent with prior research.12–14,28,30 For example, Jamoom and colleagues14 found that the caregiver relationship to the care recipient, and care recipient satisfaction with their caregiver, were associated with preventive care use among dependent adults. In addition, caregiver poor mental health has been associated with reduced access to outpatient care and influenza vaccination in community-dwelling dementia patients.13,31 The present study extends these earlier findings by examining the effects of a number of different caregiver
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Table 3. Survey-Weighted Linear Regression of the Percentage of Recommended Preventive Services Received by Care Recipients (Unweighted N¼1,327), Alternating Pooled Years: 2000–2008
Variable
Model 1 Caregiver limitations only
Model 2 Add carerecipient factors
Model 3 Add other caregiver factors (fully-adjusted)
Caregiver limitations Cognitive
–2.54**
–1.16
Mobility
–6.07
–4.39
Sensory (vision or hearing)
–0.47
–2.46*
–3.18**
Emotional health
–5.45**
–2.52**
–1.73*
–7.64**
–7.05**
2.79*
1.31
**
–1.23 **
–4.62*
Patient factors Age (ref: 65–74 years) 50–64 Z75 Patient is male
–3.38
**
–3.63**
Race/ethnicity (ref: white, nonHispanic) Black, non-Hispanic
–3.77**
–3.38*
Hispanic
–1.03
–0.31
Other race, non-Hispanic
–5.69
*
–6.14**
Education (ref: high school degree only) –4.11**
–2.63**
4.93**
3.29**
More likely to take risks than others
0.36
0.20
More able to overcome illness without medical help
–1.83**
–1.49**
–1.65**
–0.84**
No high school degree Some college Attitudes toward health
Currently employed Household poverty status (ref: poor) Near poor
–3.71
–3.56
Low income
0.10
0.35
Middle income
–0.57
0.03
High income
3.56
3.64
Public insurance only
–4.20**
–2.11*
Uninsured entire year
–6.59**
–4.74**
Insurance status (ref: any private insurance)
Region of U.S. (ref. East) Midwest
–3.05
–3.13 (continued on next page)
functional limitations across a range of preventive services in a broader population of dependent midlife and older adults. There are a number of possible mechanisms by which caregiver limitations impact access to preventive care in care recipients. First, individuals in psychological distress express less favorable perceptions of access to medical care and receive fewer recommended preventive services.17,23 Previous research also suggests that depressive symptoms alter the patient– physician visit and negatively impact patients’ opinions about patient–physician communication and trust,32,33 which in turn is associated with decreased preventive service receipt.23 It is possible that a similar mechanism is occurring in which caregivers with depression are more inclined to reject or ignore the recommendations of the care recipient’s healthcare provider. Mobility, sensory, and emotional health limitations have all been linked to structural barriers to medical care such as transportation challenges,5,8,19,34 unaccommodating outpatient facilities and equipment,35 inadequate time with providers, and poor coordination of care.34 Finally, cognitive limitations may impair the caregiver’s ability to remember and follow through with preventive care recommendations.36–38 These findings highlight the need for further research to better understand exactly how caregiver limitations interfere with care recipient access to preventive care and quality of care
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Table 3. Survey-Weighted Linear Regression of the Percentage of Recommended Preventive Services Received by Care Recipients (Unweighted N¼1,327), Alternating Pooled Years: 2000–2008 (continued)
Variable
Model 1 Caregiver limitations only
Model 2 Add carerecipient factors
Model 3 Add other caregiver factors (fully-adjusted)
South
–1.71**
–1.48
West
–3.06**
–3.36**
Number of household members
–1.99**
–1.57**
Non-metropolitan area (ref: metropolitan area)
–0.66
–0.90
Limitations Cognitive
–1.50*
–1.02
Mobility
–1.17
–1.05
Sensory (vision or hearing)
–0.27
Emotional health
2.54
Expected to need support for Z3 months
–0.03 *
–2.76**
2.46** –2.53*
Number of chronic conditions
1.45**
1.64**
Any emergency room use during year
1.74*
1.78*
Other caregiver factors Age (ref: 65–74 years) 50–64
1.08
Z75
3.24**
Caregiver is male
0.86
Caregiver is patient’s spouse
3.52**
Education (ref: high school degree only) –3.00*
No high school degree
2.29*
Some college Attitudes toward health More likely to take risks than others
0.19
More able to overcome illness without medical help
–0.77 –4.38**
Currently employed Insurance status (ref: any private insurance) Public insurance only
–1.80*
Uninsured entire year
–3.02*
Number of chronic conditions
–0.33
Any emergency room use during year
–3.68**
Adjusted R2
0.02
0.21
Note: Boldface indicates statistical significance (*po0.05; **po0.01).
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0.25
377
more generally. Additionally, medical and nursing students and practicing healthcare providers should receive training about the hazards of caregiving and the importance of attending to caregiver needs in order to improve the quality of care received by patients with disabilities.
Limitations Several study limitations should be noted. First, MEPS does not directly ask the primary household respondent if they were the person providing the unpaid assistance received by the care recipient. However, by limiting our care recipient sample to only those receiving no assistance from external formal (paid) or informal care, we can be reasonably confident that the primary MEPS household respondent—the person who self-identified as being most involved with the medical care of all household members—is indeed the primary informal caregiver. This assumption is further supported by the robustness of sensitivity analysis results of households with only two members (i.e., where there are no other household members present to assist the care recipient). Second, the receipt of preventive services was measured using caregiver selfreport. Although self-reported receipt of influenza vaccination has been shown to be reliable,39 evidence supporting other preventive services is mixed.40,41 Finally, based on the observational study design, we cannot confirm that the association between caregiver limitations and care recipient receipt of preventive services is causal.
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Conclusions
Despite these limitations, the findings reported here have important implications. First, our results in the context of prior research on caregiver health suggest that healthcare providers of dependent patients should be aware of two crucial issues: (1) caregivers are often “hidden patients” with their own healthcare needs and functional limitations42–44 and (2) failing to address caregiver limitations may jeopardize the patient’s ability to adhere to care recommendations. Providers should regularly screen caregivers for potential barriers and unmet needs. Unfortunately, the current system is organized around the patient– provider relationship, and the responsibility of the healthcare provider to the caregiver is not clear.45 Policy changes that incentivize a return to family-based care may facilitate comprehensive and coordinated care to both care recipients and caregivers.46 Second, healthcare administrators should strive to better accommodate patients and caregivers with functional limitations by reducing structural and communication barriers to care (e.g., providing ramps and elevators, extended hours of operation, and text/voice messaging and Internet technologies that facilitate communication).47 Legislative changes to reimbursement policies may be needed to support medical practices in making these improvements.47 Finally, in situations where both patient and caregiver face significant functional limitations, home-based primary care may improve access to recommended preventive services while reducing costs.48 Results suggest that informal caregivers burdened by their own impairments face challenges in facilitating access to preventive care in dependent care recipients. Policies and interventions designed to support the health of informal caregivers, as well as those designed to mitigate the impact of caregiver limitations on care recipient access preventive care, are critical to the success of community-based models of long-term care for dependent midlife and older adults. R. Schulz received funding support from a National Institute of Nursing Research (NINR) R01 on tailored technology interventions among caregivers of Alzheimer disease patients (1R01 NR014434). The NINR had no role in the study design, analysis, interpretation of data, writing of the manuscript, or the decision to submit for publication. No financial disclosures were reported by the authors of this paper.
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Appendix Supplementary data Supplementary data associated with this article can be found at, http://dx.doi.org/10.1016/j.amepre.2015.02.003.
Results: Of the 5-year weighted estimate of 14.2 million caregiver–care recipient dyads, 38.0% of caregivers reported at least one functional limitation. The percentage of recommended preventive services received by care recipients was significantly lower if the caregiver had cognitive, mobility, or emotional health limitations. Each type of caregiver functional limitation was negatively associated with at least four different preventive services. Conclusions: Informal caregivers burdened by their own functional impairments may face challenges in facilitating access to preventive care in dependent midlife and older adults. Policies and interventions designed to prevent or mitigate the impact of caregiver functional impairments are critical to the success of community-based models of care for dependent adults. (Am J Prev Med 2015;49(3):370–379) & 2015 American Journal of Preventive Medicine
Introduction
T
he number of older adults in the U.S. is projected to double by 2030, bringing large increases in the number of people with disabilities living in the community.1 Recognizing these trends, there is great interest among policymakers and public health From the Veterans Affairs Pittsburgh Healthcare System and the Center for Health Equity Research and Promotion (J.M. Thorpe, C.T. Thorpe); Department of Pharmacy and Therapeutics (J.M. Thorpe, C.T. Thorpe, Schleiden), University of Pittsburgh School of Pharmacy; Department of Psychiatry (Schulz), University of Pittsburgh School of Medicine; University Center for Social and Urban Research (Schulz), University of Pittsburgh, Pittsburgh, Pennsylvania; Center for Health Services Research in Primary Care (Van Houtven), Durham Veterans Affairs Medical Center; and the Division of General Internal Medicine (Van Houtven), School of Medicine, Duke University Medical Center, Durham, North Carolina Address correspondence to: Joshua M. Thorpe, PhD, MPH, University of Pittsburgh School of Pharmacy, 916 Salk Hall, 3501 Terrace Street, Pittsburgh PA 15261. E-mail: [email protected]. 0749-3797/$36.00 http://dx.doi.org/10.1016/j.amepre.2015.02.003
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organizations in assisting individuals with disabilities to remain in the community as they age.2 The high risk of institutionalization for those with disabilities poses a major challenge to these efforts.3–5 Furthermore, people with disabilities are at greater risk for developing new illnesses, suffering from secondary disease-related complications, and experiencing rapid functional decline.4,5 Therefore, timely access to clinical preventive services is particularly important to delay or prevent the need for more expensive institutional care.6 Unfortunately, adults with disabilities have lower preventive care utilization rates compared to the general population.4,7,8 A better understanding of the underlying reasons for lower utilization rates is critical to the success of aging-inplace policies and interventions. Most long-term care (LTC) of adults with disabilities in the U.S. occurs in the community, and nearly 80% of community-based LTC is provided exclusively by informal (unpaid) caregivers.9 Informal caregivers often assist
& 2015 American Journal of Preventive Medicine
Published by Elsevier Inc.
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with a range of day-to-day activities, including supporting the medical care needs of the care recipient.10–12 Although prior research has documented other aspects of the caregiving role, to our knowledge, only two studies examined the role caregivers play in facilitating access to preventive care.13,14 Further research in this area is important for two main reasons: (1) the negative effects of caregiving on caregiver health are well known15,16; and (2) one’s own poor health and disabilities are known to negatively impact adherence to recommended medical care.8,17–19 Caregivers burdened by their own impairments may find it difficult to facilitate access to care in dependent older adults. Previous research, for example, has linked caregiver depression to lower influenza vaccination rates in dependent older adults.20 However, this study focused on dementia caregivers, examined only one preventive service, and was limited to veterans. Jamoom et al.14 studied a broader set of informal caregivers and preventive services and found mixed results on the impact of the presence of a caregiver in facilitating access. However, data on caregiver health and functional impairments were not assessed. The primary goal of this study is to test the hypothesis that caregiver functional limitations are associated with decreased receipt of clinical preventive services among care recipients in a nationally representative sample of dependent midlife and older adults. A secondary goal is to evaluate the overall impact of caregiver factors on receipt of preventive services.
Methods Data Source The sample was drawn from pooled alternate years of the 2000– 2008 Medical Expenditure Panel Surveys (MEPS; data analyzed in February–October 2014). MEPS is a longitudinal survey of U.S. households conducted to provide nationally representative estimates of healthcare use and expenditures for the noninstitutionalized civilian population.21 MEPS asks the household member most knowledgeable about the health and healthcare use of all household members to be the primary respondent for five interviews conducted over 2 years. This study was deemed exempt by the University of Pittsburgh IRB.
Study Sample The sample was limited to midlife and older adults (aged Z50 years) who received assistance for a disability (N¼1,765). Specifically, the sample was subset to households where the primary household respondent reported that a midlife/older adult household member received help or supervision with at least one activity of daily living (ADL) or at least one instrumental activity of daily living (IADL). September 2015
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Next, the sample was restricted to dependent midlife/older adults (henceforth, care recipients) where the primary respondent was likely serving as the primary caregiver. MEPS does not include a caregiver indicator variable—rather, caregiver status is inferred from other available information. Specifically, the primary MEPS respondent was considered an informal caregiver if he or she (1) co-resided with a dependent care recipient as defined above; (2) received no assistance for disabilities of his or her own; and (3) reported that no assistance was provided to care recipients from formal (paid) or other informal caregivers outside the household. These criteria represent a balance between increased internal validity that may be achieved by more restrictive definitions and increased generalizability to the range of caregiving situations across the U.S. that may be achieved by less restrictive definitions. Sensitivity analyses (described below) were conducted to evaluate alternative criteria. The final unweighted sample using these criteria comprised 1,327 dyads of community-dwelling care recipients and caregivers (weighted 5-year national estimate, 14,149,701). The robustness of findings to more and less restrictive criteria for identifying informal caregivers was examined, including (1) restricting to households with only two members (responding caregiver and care recipient only); (2) limiting to only spouse caregiver–care recipient dyads; (3) excluding care recipients whose only limitations were in higher-level IADL skills; (4) excluding care recipients whose disability was expected to last o3 months; and (5) including care recipients who received formal in-home care or informal care from others. Results were robust to these alternative criteria, and Appendix Table 1 presents results from analyses limiting to households with only two members.
Measures To measure the dependent variable, clinical preventive services, MEPS respondents were asked to report the time elapsed (o1 year, 1–o2 years, 2–o3 years, 3–5 years, 45 years, never) since last receiving the following specific preventive services: (1) influenza vaccination; (2) routine physical checkup; (3) hypertension screening; (4) cholesterol screening; (5) colorectal cancer screening; (6) routine dental checkup; (7) breast cancer screening, mammography (women only); and (8) prostate cancer screening (men only). Reponses to these questions were used to determine whether each service was obtained according to 2008 U.S. Preventive Services Task Force guidelines.22 Similar to previous studies,23,24 the primary dependent variable is a summary measure reflecting the percentage of age- and sex-appropriate preventive services received. Binary indicators of each preventive service were also analyzed (Table 2 shows unadjusted results; Appendix Table 2 shows adjusted results). Caregiver functional limitations measures were consistent with the “basic actions” functional domains described by Altman and Bernstein.25 Binary indicators of limitations were created in four domains: cognition (confusion or memory loss); mobility (difficulty walking, standing, or bending); sensory (vision and hearing); and emotional health (perceived mental health is fair/poor). Previous work has demonstrated concurrent validity of the MEPS emotional health and cognitive limitation items with the ShortForm 12 Health Survey (SF-12) Mental Component Score,26 and there was a high correlation between mobility impairment and a
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Table 1. Summary Statistics by Caregiver Functional Limitation Status (Unweighted N¼1,327), Alternating Pooled Years: 2000–2008
Study variables Total sample
Overall, weighted
No caregiver limitations
Any caregiver limitations
p-value
14,149,701
8,777,560
5,372,141
—
72.3
72.4
72.1
Patient factors Age (years), mean Age (years), %
0.45
50–64
28.2
28.6
27.6
65–75
20.8
21.4
19.8
Z75
51.0
50.0
52.6
62.9
62.1
64.1
Patient is male, %
0.39
Race/ethnicity, %
0.63 0.10
White, non-Hispanic
81.4
80.9
79.8
Black, non-Hispanic
7.4
7.3
7.6
Hispanic
6.3
6.4
6.2
Other race, non-Hispanic
4.9
5.5
3.8
Education, %
0.23
No high school degree
32.9
29.7
36.4
High school degree only
34.8
37.2
33.9
Some college
32.4
33.1
29.7
Attitudes toward health More likely to take risks than others
1.96
1.89
2.07
o0.01
More able to overcome illness without medical help
1.60
1.56
1.67
o0.01
Patient is employed, %
14.8
14.1
16.1
0.21 o0.01
Household poverty status, % Poor
9.1
7.3
12.1
Near poor
3.8
3.2
4.9
Low income
18.4
17.0
20.6
Middle income
34.0
33.5
34.6
High income
34.6
39.0
27.5 o0.01
Insurance status, % Any private insurance
57.8
60.3
53.7
Public insurance only
38.5
36.6
41.1
Uninsured entire year
3.8
3.2
4.9 o0.05
Region of U.S., % Northeast
17.5
17.6
17.4
Midwest
21.8
23.1
19.7 (continued on next page)
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Table 1. Summary Statistics by Caregiver Functional Limitation Status (Unweighted N¼1,327), Alternating Pooled Years: 2000–2008 (continued) Overall, weighted
No caregiver limitations
Any caregiver limitations
South
37.1
35.7
39.4
West
23.5
23.5
23.5
2.4
2.4
2.3
0.31
22.7
22.7
22.9
0.37
Cognitive
52.8
50.7
56.2
o0.05
Mobility
34.0
32.7
36.0
o0.01
Sensory (vision or hearing)
37.3
33.7
43.2
o0.05
Emotional health
32.6
28.2
39.7
o0.01
2.4
2.4
2.6
o0.01
22.3
25.8
16.4
0.16
67.7
66.9
68.9
o0.01
Study variables
Number of household members Non-metropolitan area, %
p-value
Limitations, %
Number of chronic conditions Any emergency room use during year, % Other caregiver factors Age (years), mean
o0.01
Age (years), % 50–64
41.6
44.0
37.5
65–75
26.2
27.7
23.7
Z75
32.3
28.3
38.8
28.5
26.6
31.7
Caregiver is male, %
0.27 o0.05
Education, % No high school degree
22.3
18.2
28.9
High school degree only
38.0
39.2
36.2
Some college
39.7
42.6
34.9
More likely to take risks than others
2.0
2.1
1.9
o0.05
More able to overcome illness without medical help
1.7
1.8
1.7
o0.05
28.8
34.2
20.0
o0.01
Attitudes toward health
Currently employed, %
o0.01
Insurance status, % Any private insurance
66.9
71.0
60.2
Public insurance only
26.9
22.8
33.5
Uninsured entire year
6.2
6.1
6.3
Cognitive
—
11.7
—
Mobility
—
10.5
—
Sensory (vision or hearing)
—
21.7
Limitations, %
— (continued on next page)
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Table 1. Summary Statistics by Caregiver Functional Limitation Status (Unweighted N¼1,327), Alternating Pooled Years: 2000–2008 (continued)
Study variables
Overall, weighted
No caregiver limitations
Any caregiver limitations
p-value
—
10.8
—
1.5
1.3
1.7
o0.01
16.3
12.9
21.7
o0.01
Emotional health Number of chronic conditions Any emergency room use during year, %
Note: Boldface indicates statistical significance at po0.05.
diagnosis of arthritis in the current sample (polychoric correlation¼0.40). The selection of covariates was guided by a modified version of the Andersen Sociobehavioral Model (SBM) of health services use,27,28 which incorporates both caregiver and care recipient factors to predict care recipient use of preventive services. Predisposing variables are factors that increase the propensity for health service use by care recipients. Enabling variables are factors that facilitate or impede care recipient access to health services and include caregiver functional limitations in this study. Predisposing variables included caregiver and care recipient age (50–64, 65–74, Z75 years); sex; whether or not dyads were married; formal education (no high school degree, high school only, some college); care recipient race/ethnicity (non-Hispanic white, Non-Hispanic black, Hispanic, non-Hispanic other race); attitudes about taking risks as measured by the five-interval Likert item I am more likely to take risks than others (1=disagree strongly to 5=agree strongly); attitudes about the value of medical care as measured by the five-interval Likert item I am able to overcome illness without medical help (1=disagree strongly to 5=agree strongly); total number of chronic conditions; and any versus no emergency room use. Enabling variables included being employed full- or parttime versus unemployed/retired; health insurance status (any private insurance, public insurance only, uninsured entire year); region of the U.S. (Northeast, Midwest, South, West); number of household members; whether the care recipient was expected to need caregiving assistance for Z3 months; and whether the household was located in a Metropolitan Statistical Area.
Statistical Analysis Stata, version 13.1, was used for analyses. Conditional mean imputation was used to reclaim cases with missing data (o10% missing data) to generate a single complete data set.29 Surveyweighted least squares regression was used to estimate the effects of independent variables on the percentage of received preventive services, and Taylor series linearization was used to adjust variance estimates for the MEPS complex sampling design. Surveyweighted logistic regression was used to analyze specific preventive services. Three separate models were estimated to examine factors related to the percentage of preventive care received by care recipients. Variables were entered into the model in three stages: Caregiver functional limitations were entered first, followed by all care
recipient factors, and finally all other caregiver factors to estimate fully adjusted results.
Results Table 1 illustrates the MEPS caregiver and care recipient characteristics overall and by caregiver functional limitation status. Of the 14.2 million caregiver–care recipient dyads in the pooled MEPS sample, 38% of caregivers reported at least one functional limitation and 12% had multiple functional limitations (data not shown). Twelve percent of caregivers reported a cognitive limitation, 10% reported a mobility limitation, 22% reported a vision or hearing limitation, and 11% reported poor or fair mental health. Table 2 presents percentages of care recipient receipt of preventive services by caregiver functional limitation type. The percentage of recommended preventive services that were received was significantly lower if the caregiver had cognitive limitations (–5.3 percentage points [PPs]); mobility limitations (–7.3 PPs); or emotional health limitations (–7.1 PPs). Each caregiver functional limitation was negatively associated with at least four different preventive services. Caregiver functional limitations were not associated with colorectal cancer screening, mammogram receipt, or cervical cancer screening rates. Model 1 in Table 3 presents the results of the unadjusted survey-weighted least squares regression of the percentage of recommended preventive services received by care recipients on caregiver limitation type. With the exception of sensory limitations, all caregiver limitations were negatively associated with care recipient receipt of preventive services. Model 2 presents regression results adjusting for all care recipient covariates. Controlling for care recipient factors, caregiver cognitive limitations were no longer significant. However, the addition of care recipient factors into the model revealed a significant association with caregiver sensory limitations and preventive services. Model 3 presents the fully adjusted regression results including both care recipient www.ajpmonline.org
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Table 2. Percentage of Recommended Preventive Services Received by Care Recipients by Caregiver Functional Limitation (Unweighted N¼1,327), Alternating Pooled Years: 2000–2008 Caregiver cognitive limitation Care Recipient Preventive Care Use
No
% of recommended preventive services received by care recipients
75.2
Influenza vaccination
67.8
**
87.1
**
98.6
**
Cholesterol screenings
95.5
*
Colorectal screenings
59.2
Routine physical checkup Hypertension screenings
Routine dental checkup
31.9
Mammogram (women only)
84.8
Cervical cancer screenings (women only)
73.0
Prostate cancer screenings (men only)
62.6
**
*
Yes
Caregiver mobility limitation No
Yes
Caregiver sensory limitation No
69.9
75.3
**
68.0
74.9
65.9
68.4**
60.3
67.1
72.6
**
96.9
86.1 98.5
92.6
95.5
58.2
59.6
18.1
31.8
75.5
76.6
68.4
73.6
60.1
64.6
79.3 97.6
**
**
**
Yes
Caregiver emotional health limitation No
Yes
73.5
75.3
**
68.2
69.2
68.6**
59.2
**
80.1
86.9
**
73.3
*
97.3
98.5
86.9
98.7
*
92.0
95.8
92.8
95.5
54.4
58.7
60.6
59.0
97.7 *
92.4 59.5
*
16.7
30.2
30.5
31.3
81.2
78.6
73.1
77.8
72.1
61.2
70.8
74.8
70.0
81.9
62.3
62.8
58.6
39.8
**
64.3
21.5
Note: Boldface indicates statistical significance (*po0.05; **po0.01).
and caregiver factors. Even after adjusting for all potential covariates, three of four caregiver functional limitations were independently associated with reduced access to preventive services among care recipients. Joint F-statistics across models revealed that the inclusion of caregiver factors generally (F[17, 1,280]¼ 3.47, po0.001) and caregiver functional limitations specifically (F[4, 1,280]¼4.20, po0.001) improved model fit. Care recipients who had caregivers who were older (aged Z75 years); were their spouses; and had some college-level education (versus high school only) were more likely to receive preventive services. Care recipients who had caregivers with no high school degree; who were currently employed; who had public health insurance only or no insurance (versus private insurance); and who had an emergency room visit in the past year were less likely to receive preventive services.
Discussion Informal caregivers regularly assist with coordinating the health care of care recipients with disabilities, often while coping with their own functional limitations. In this nationally representative sample of informal caregivers, nearly 40% reported at least one functional limitation and 13% reported multiple limitations. Importantly, this September 2015
study is one of the first to directly show that such caregiver limitations are a risk factor for reduced receipt of recommended preventive services in dependent midlife and older adults. Our results showed that care recipients whose caregivers reported functional limitations received a lower percentage of recommended preventive services, with the weighted PP decrease being highest in the presence of caregiver mobility limitations. Given our total 5-year weighted count of 14.2 million dyads, the observed 7.3 PP difference associated with caregiver mobility limitations alone corresponds to 1,032,928 fewer recommended preventive services delivered to dependent adults (4207,000 fewer services per year). Additionally, each caregiver limitation type was negatively associated with at least four different types of preventive services. The finding that caregiver characteristics are associated with care recipient access to health services is consistent with prior research.12–14,28,30 For example, Jamoom and colleagues14 found that the caregiver relationship to the care recipient, and care recipient satisfaction with their caregiver, were associated with preventive care use among dependent adults. In addition, caregiver poor mental health has been associated with reduced access to outpatient care and influenza vaccination in community-dwelling dementia patients.13,31 The present study extends these earlier findings by examining the effects of a number of different caregiver
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376
Table 3. Survey-Weighted Linear Regression of the Percentage of Recommended Preventive Services Received by Care Recipients (Unweighted N¼1,327), Alternating Pooled Years: 2000–2008
Variable
Model 1 Caregiver limitations only
Model 2 Add carerecipient factors
Model 3 Add other caregiver factors (fully-adjusted)
Caregiver limitations Cognitive
–2.54**
–1.16
Mobility
–6.07
–4.39
Sensory (vision or hearing)
–0.47
–2.46*
–3.18**
Emotional health
–5.45**
–2.52**
–1.73*
–7.64**
–7.05**
2.79*
1.31
**
–1.23 **
–4.62*
Patient factors Age (ref: 65–74 years) 50–64 Z75 Patient is male
–3.38
**
–3.63**
Race/ethnicity (ref: white, nonHispanic) Black, non-Hispanic
–3.77**
–3.38*
Hispanic
–1.03
–0.31
Other race, non-Hispanic
–5.69
*
–6.14**
Education (ref: high school degree only) –4.11**
–2.63**
4.93**
3.29**
More likely to take risks than others
0.36
0.20
More able to overcome illness without medical help
–1.83**
–1.49**
–1.65**
–0.84**
No high school degree Some college Attitudes toward health
Currently employed Household poverty status (ref: poor) Near poor
–3.71
–3.56
Low income
0.10
0.35
Middle income
–0.57
0.03
High income
3.56
3.64
Public insurance only
–4.20**
–2.11*
Uninsured entire year
–6.59**
–4.74**
Insurance status (ref: any private insurance)
Region of U.S. (ref. East) Midwest
–3.05
–3.13 (continued on next page)
functional limitations across a range of preventive services in a broader population of dependent midlife and older adults. There are a number of possible mechanisms by which caregiver limitations impact access to preventive care in care recipients. First, individuals in psychological distress express less favorable perceptions of access to medical care and receive fewer recommended preventive services.17,23 Previous research also suggests that depressive symptoms alter the patient– physician visit and negatively impact patients’ opinions about patient–physician communication and trust,32,33 which in turn is associated with decreased preventive service receipt.23 It is possible that a similar mechanism is occurring in which caregivers with depression are more inclined to reject or ignore the recommendations of the care recipient’s healthcare provider. Mobility, sensory, and emotional health limitations have all been linked to structural barriers to medical care such as transportation challenges,5,8,19,34 unaccommodating outpatient facilities and equipment,35 inadequate time with providers, and poor coordination of care.34 Finally, cognitive limitations may impair the caregiver’s ability to remember and follow through with preventive care recommendations.36–38 These findings highlight the need for further research to better understand exactly how caregiver limitations interfere with care recipient access to preventive care and quality of care
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Table 3. Survey-Weighted Linear Regression of the Percentage of Recommended Preventive Services Received by Care Recipients (Unweighted N¼1,327), Alternating Pooled Years: 2000–2008 (continued)
Variable
Model 1 Caregiver limitations only
Model 2 Add carerecipient factors
Model 3 Add other caregiver factors (fully-adjusted)
South
–1.71**
–1.48
West
–3.06**
–3.36**
Number of household members
–1.99**
–1.57**
Non-metropolitan area (ref: metropolitan area)
–0.66
–0.90
Limitations Cognitive
–1.50*
–1.02
Mobility
–1.17
–1.05
Sensory (vision or hearing)
–0.27
Emotional health
2.54
Expected to need support for Z3 months
–0.03 *
–2.76**
2.46** –2.53*
Number of chronic conditions
1.45**
1.64**
Any emergency room use during year
1.74*
1.78*
Other caregiver factors Age (ref: 65–74 years) 50–64
1.08
Z75
3.24**
Caregiver is male
0.86
Caregiver is patient’s spouse
3.52**
Education (ref: high school degree only) –3.00*
No high school degree
2.29*
Some college Attitudes toward health More likely to take risks than others
0.19
More able to overcome illness without medical help
–0.77 –4.38**
Currently employed Insurance status (ref: any private insurance) Public insurance only
–1.80*
Uninsured entire year
–3.02*
Number of chronic conditions
–0.33
Any emergency room use during year
–3.68**
Adjusted R2
0.02
0.21
Note: Boldface indicates statistical significance (*po0.05; **po0.01).
September 2015
0.25
377
more generally. Additionally, medical and nursing students and practicing healthcare providers should receive training about the hazards of caregiving and the importance of attending to caregiver needs in order to improve the quality of care received by patients with disabilities.
Limitations Several study limitations should be noted. First, MEPS does not directly ask the primary household respondent if they were the person providing the unpaid assistance received by the care recipient. However, by limiting our care recipient sample to only those receiving no assistance from external formal (paid) or informal care, we can be reasonably confident that the primary MEPS household respondent—the person who self-identified as being most involved with the medical care of all household members—is indeed the primary informal caregiver. This assumption is further supported by the robustness of sensitivity analysis results of households with only two members (i.e., where there are no other household members present to assist the care recipient). Second, the receipt of preventive services was measured using caregiver selfreport. Although self-reported receipt of influenza vaccination has been shown to be reliable,39 evidence supporting other preventive services is mixed.40,41 Finally, based on the observational study design, we cannot confirm that the association between caregiver limitations and care recipient receipt of preventive services is causal.
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Conclusions
Despite these limitations, the findings reported here have important implications. First, our results in the context of prior research on caregiver health suggest that healthcare providers of dependent patients should be aware of two crucial issues: (1) caregivers are often “hidden patients” with their own healthcare needs and functional limitations42–44 and (2) failing to address caregiver limitations may jeopardize the patient’s ability to adhere to care recommendations. Providers should regularly screen caregivers for potential barriers and unmet needs. Unfortunately, the current system is organized around the patient– provider relationship, and the responsibility of the healthcare provider to the caregiver is not clear.45 Policy changes that incentivize a return to family-based care may facilitate comprehensive and coordinated care to both care recipients and caregivers.46 Second, healthcare administrators should strive to better accommodate patients and caregivers with functional limitations by reducing structural and communication barriers to care (e.g., providing ramps and elevators, extended hours of operation, and text/voice messaging and Internet technologies that facilitate communication).47 Legislative changes to reimbursement policies may be needed to support medical practices in making these improvements.47 Finally, in situations where both patient and caregiver face significant functional limitations, home-based primary care may improve access to recommended preventive services while reducing costs.48 Results suggest that informal caregivers burdened by their own impairments face challenges in facilitating access to preventive care in dependent care recipients. Policies and interventions designed to support the health of informal caregivers, as well as those designed to mitigate the impact of caregiver limitations on care recipient access preventive care, are critical to the success of community-based models of long-term care for dependent midlife and older adults. R. Schulz received funding support from a National Institute of Nursing Research (NINR) R01 on tailored technology interventions among caregivers of Alzheimer disease patients (1R01 NR014434). The NINR had no role in the study design, analysis, interpretation of data, writing of the manuscript, or the decision to submit for publication. No financial disclosures were reported by the authors of this paper.
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Appendix Supplementary data Supplementary data associated with this article can be found at, http://dx.doi.org/10.1016/j.amepre.2015.02.003.
