JAG33210.1177/0733464812460431 460431Journal of Applied GerontologyBrown et al.
Article
Journal of Applied Gerontology 2014, Vol. 33(2) 189–206 Use of Adult Day Care © The Author(s) 2012 Reprints and permissions: Service Centers in sagepub.com/journalsPermissions.nav DOI: 10.1177/0733464812460431 an Ethnically Diverse jag.sagepub.com Sample of Older Adults
Ellen L. Brown1, Marie-Luise Friedemann,1 and Ana C. Mauro1
Abstract Our nation is aging and unprepared to meet the needs of community-dwelling seniors and their caregivers. This study explored the perceived need for and use of adult day care services (ADS) in a low-income population. A random sample of 537 patient–caregiver dyads were recruited in home care agencies, and separate in- home surveys were conducted. Patients and caregivers were primarily women and 50.2% were of Hispanic origin. Although half (n = 267/537, 49.7%) of the caregivers had a perceived need for using ADS, only 19.1% of these caregivers used these services, mostly in the context of severe patient cognitive impairment. There were no racial or ethnic differences among ADS users and nonusers. The overall low use of ADS in a growing ethnically diverse senior population with a perceived need for services warrants further investigation and action as states seek to decrease nurs- ing home placement and find solutions for our looming caregiving crisis.
Keywords adult day care, home- and community-based services, caregiver
Manuscript received: February 03, 2012; final revision received: June 11, 2012; accepted: August 10, 2012.
1Florida International University, Miami, FL, USA
Corresponding Author: Ellen L. Brown, College of Nursing and Health Sciences, Florida International University, 11200 SW 8th Street, ACH-3, Office 226, Miami, FL 33199, USA. Email: [email protected]
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Whereas approximately 1.4 million older adults live in nursing homes in the United States (National Center for Health Statistics, 2012), it is estimated that by 2050, 19 million Americans (almost doubling from the present day) will receive long-term care services, many within the home and in community-based settings, and many older adults will be eligible for Medicaid assistance to pay for this care (USDHHS, 2011). Supporting the choice to live in the community and in one’s own home is clearly the preference of many older adults and their families and is a focus of the 2010 Affordable Care Act. There is evidence that meeting the needs of a growing low-income disabled older adult population through provision of Medicaid home and community-based services can be cost-saving for states by keeping seniors from entering a nursing home (Felix, Mays, Stewarts, Cottoms, & Olson, 2011). In these times of fiscal constraints, improving the efficiency of home- and community-based care delivery for a growing, culturally diverse, dis- abled Medicaid-eligible older adult population is vital for state Medicaid pro- grams and Waiver Programs (Henry J.Kaiser Family Foundation, 2007). One home- and community-based service option is Adult Day Health Care Service(s) (ADS); in general, ADS are designed to provide therapeutic social programs and some health services to adults and respite for caregivers. An intended goal of ADS is to extend the participants’ stay at their homes as well as maintain and restore cognitive and physical functioning (U.S. Department of Health & Human Services [USDHHS; Office of Disability, Aging and Long-Term Care Policy (DALTCP)], 2006). Overall, there has been growth in home- and community-based services spurred by states, including ADS, in their Medicaid state plan. In recent years, adult day care programs have increased from 2,000 in the year 1989 to more than 4,600 in 2009 servicing more than 260,000 participants and their families (Metropolitan Life Insurance Company [MetLife] & Mature Market Institute [MMI], 2010), but this growth has not kept pace with the increas- ing number of older adults with a potential need. Furthermore, public funding for ADS is limited and providers are concerned about their future financial viability (Anderson, Dabelko-Schoeny, & Tarrant, 2012). ADS can be divided into three models of care, each focusing on different aspects of the caring spectrum (MetLife & MMI, 2010). The social model focuses on providing preventive services as well as social activities created to enhance the care recipients’ experience. Facilities operating under the medical model offer assessment, treatment, and rehabilitation services. Combined models offer both social and medical services as outlined above. Nevertheless, the distinction between these different approaches to ADS is often ambiguous, as there has been an increasing emphasis on offering care that is congruent with both the social and medical models (MetLife & MMI, 2010).
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According to a 2001-2002 national survey of 3,493 ADS centers, conducted by Wake Forest University School of Medicine, the average age of participant is 72 years, who suffer from dementia or other disabling conditions (Partners in Caregiving, 2002). Most ADS program participants live in the home of their adult child (35%) or with a spouse (20%) (Partners in Caregiving, 2002). The survey at the centers indicated that more than half of the participants used respite services due to cognitive impairments, and almost 25% of the participants were diagnosed with mental retardation or other developmental disabilities. According to the sur- vey, specific services are provided as follows in the available programs: therapeu- tic activities (97%), personal assistance (96%), meals (84%), social services (82%), health-related services (74%), medication management (70%), transpor- tation (68%), personal care services (64%), caregiver support groups (64%), and rehabilitation therapy (28%). The USDHHS (DALTCP) study (2006) finds ADS centers often assist participants with Activities of Daily Living (ADL) tasks and medication management as well as health education and monitoring. There are two significant differences between ADS and other home- and community-based services. ADS are provided “outside of the home” and in a “group setting” (Biegel, Bass, Schulz, & Morzycz, 1993; Conrad, Hughes, & Wang, 1992). These factors may affect the use of ADS by caregivers, and consideration should be given to examining “in-home” and “out-of -home services” separately (Gill, Hinrichsen, & DiGiuseppe, 1998). There is a dearth of research examining the impact of ADS services on the care recipient. ADS have been associated with an improved quality of life for participants (Schmitt, Sands, Weiss, Dowling, & Covinsky, 2010) as well as a decrease in caregiver burden and stress for caregivers (Gitlin, Reever, Dennis, Mathieu, & Hauck, 2006; Zarit et al., 2011), but other studies failed to find a positive impact (Baumgarten, Lebel, Laprise, Leclerc, & Quinn, 2002; Gottlieb & Johnson, 2000; Zank & Schacke, 2002). There is no established best approach to identifying when a care recipient or caregiver (i.e., respite) will benefit from the use of ADS and how ADS should be used in combination with other home- and community-based services and infor- mal caregiving. Participation in ADS has been found to be associated with less use of other home care services (Skarupski et al., 2008) without threatening the participants’ staying at their home. In another study, the use of ADS in a frail older adult population significantly increased, when case managers knowledge- able about home and community services were integrated into the primary care setting (Parsons et al., 2012). The present study builds on previous research by examining the use of ADS in a racially and ethnically diverse older adult population that includes Cuban Americans, the largest older adult Hispanic group in the United States (U.S.
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Census Bureau, 2007). In the United States, Hispanic caregivers may face differ- ent barriers to accessing and using community- and home-based services (Whittier, Scharlach, & Dal Santo, 2005) compared to non-Hispanics. Nevertheless, Scharlach, Giunta, Chun-Chung Chow, and Lehning (2008) found in a telephone survey of California caregivers that neither race nor ethnicity affected caregiver service utilization, and another research team found that Hispanic caregivers used more ADS and respite services than White non-Hispanics and African American caregivers (Kosloski, Schaefer, Allwardt, Montgomery, & Karner, 2002). To shed more light on the issue of ADS use, this study examined (a) the per- ceived need and use of ADS in a primarily minority, low-income, older adult caregiving population, and (b) patient and caregiver factors associated with per- ceived need and use of ADS. These data are needed and timely as the Medicare Adult Day Services Act of 2009 is currently under revision (Anderson et al., 2012). The Medicare Adult Day Services Act of 2009 (H.R. 3043) proposes to amend title XVIII of the Social Security Act to provide for coverage of ADS under the Medicare Program. Policy makers and advocates concerned about dis- parities in the use of ADS will benefit from having current information about use of ADS in an understudied growing diverse U.S. population. In this study, we selected variables from the “Behavioral Model of Health Services Use” to organize and inform the study (Andersen & Newman, 1973). The model originally was used to understand predictors of family health service use and has been used to understand variations in caregiver support services (Gill et al., 1998; Robinson, Buckwalter, & Reed, 2005; Scharlach et al., 2008). The model purports that population predisposing factors (i.e., age, gender, race, edu- cation, occupation, social structure, health beliefs), enabling factors (i.e., income, insurance status, availability, and accessibility of services), and need factors (i.e., level of illness and emotional distress) are central to predicting health service use. We acknowledge the model variables have not always been of use in predicting out-of-home caregiver support services (Gill et al., 1998; Kosloski & Montgomery, 1994; Scharlach et al., 2008), but it “is a useful framework for examining poten- tial contributors to differential rates of caregiver service use” (Scharlach et al., 2008, p. 341).
Methods The Institutional Review Board of Florida International University approved this study. The setting for this study was two counties in South Florida (Miami-Dade and Broward). Data for this paper came from patient and caregiver surveys conducted for a large study “Culture, Family Patterns, and Caregiver Resource Use” explor- ing caregiving arrangements and service use (Friedemann, 2010). The larger
Downloaded from jag.sagepub.com at OHIO STATE UNIVERSITY LIBRARY on March 6, 2015 Brown et al. 193 study was conducted over a 4-year period of multiethnic caregivers–patient dyads and explored total home- and community-based service use. The present study focuses only on ADS use. Our rationale for this secondary analysis is the distinct differences between ADS and most other homebound services (i.e., ADS is pro- vided in a group setting and outside of the home). Detailed methods for the larger study are available from the second author. In this secondary analysis study we report on 537 patients–caregiver dyads using professional home health services through two major hospitals and in the community at large. The patients were eligible, if they were 65 years of age or older and required physical care or assistance in ADL. The caregivers were eligible if they were involved in decisions about caring for the family member (or friend) and lived with the patient or not farther away than 30 minutes’ driving. To be eligible, all participants needed to speak English or Spanish and be able to provide informed consent. Care recipients unable to provide informed consent due to dementia were not interviewed. Home health staff were trained by the research team to conduct a standardized random sampling procedure and during a regular home visit obtain permission from caregivers to be contacted by the researcher. Twenty percent of persons contacted declined. After receiving the permission, research staff telephoned the potential participants, described the study, and arranged a home visit. At that point, 90% of the potential participants agreed to a home visit. The interviewers (12 over the time of 3.5 years) had a professional degree in a medical or service discipline and extensive experience in working with people, preferably older adults. In-home surveys of both patients and their caregivers were conducted with patients and caregivers separately in either English or Spanish from 2005 to 2008. Forty-six percent of surveys were conducted in Spanish.
Measures Data included predisposing, enabling, and need variables consistent with the Behavioral Model of Health Services Use. Predisposing variables included the patient’s and caregiver’s age, gender, race, ethnic group, marital status, the care- giver’s family relationship (adult child, spouse, other relative, or nonrelative), and patient living arrangement (alone or with others). The enabling factors included the income of patient and caregiver. The caregiver income did not include the patient’s, even if they lived together. The need factors included the patient’s functional ability (ADL; Instrumental Activities of Daily Living [IADL]), cognitive status, the caregiver’s perceived need for ADS, and caregiver depression. Specifically, the patient’s functional
Downloaded from jag.sagepub.com at OHIO STATE UNIVERSITY LIBRARY on March 6, 2015 194 Journal of Applied Gerontology 33(2) status was assessed using the Montgomery 12-item ADL/IADL Scale. This scale measures physical and instrumental ability of the patient and yielded an overall reliability coefficient of .86 when originally tested (Montgomery & Borgotta, 1985; Montgomery & Kosloski, 2001). The ADL subscale has a score range from 5 to 15, and the IADL scale from 7 to 21; higher score indicates better function. The Mini-Mental State Examination (MMSE) was used to assess the patient’s cognitive status (Folstein, Folstein, & McHugh, 1975). The caregiver’s depres- sion severity was a score on the Patient Health Questionnaire-9 (PHQ-9; scale from 0 to 27; higher score indicates more depression symptoms), a measure that provides satisfactory reliability and validity (Kroenke, Spitzer, & Williams, 2001). PHQ-9 scores of 5 to 9 indicate mild or minimal symptoms. If symptoms are present more than 2 years, it may indicate chronic depression, and scores above 9 indicate a potential depression diagnosis (MacArthur Initiative on Depression and Primary Care, 2009). The PHQ-9 measure was added during the course of study and was available for 205 caregiver subjects. ADS use and need were measured by single survey questions. Interviewers asked the caregivers whether or not they had used ADS within the last year (yes or no) and whether they presently perceived a need for ADS. Response choices were “Yes, I definitely need the service” or “Yes, I might need the service” or “No, I definitely do not need the service.”
Data Analysis Descriptive statistics such as frequencies, percentages, mean, and standard deviations were used to describe the groups (persons with perceived need for ADS and no need for ADS, users of ADS and nonusers of ADS). We combined the two “yes” responses for the data analysis to determine a perceived need for ADS (i.e., “Yes, I definitely need the service,” and “Yes, I might need the ser- vice”), since only few caregivers chose the second option. We investigated sig- nificant differences between groups on the basis of their sociodemographics, functional impairment, cognitive impairment, caregiver relationship, and care- giver depression by performing t tests and chi-squares.
Results The patient and caregiver sociodemographic and clinical characteristics are dis- played in Table 1 for the 537 patients and their caregiver participants. The table shows that the majority of the caregivers as well as the patients were women. Half of the caregivers were adult children, about one third (36.3%) were spouses of the patients, and approximately 13% were “nonkin or other” relatives consis- tent with other caregiver populations (Gill et al., 1998; Kosloski et al., 2002).
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Table 1. Sociodemographic and Clinical Characteristics of the Patients and Caregivers.
Variables Patients % Caregivers % Predisposing factors Gender Female 66.5 78.8 Male 33.5 21.2 Ethnicity Hispanic 51.0 51.0 Race White/non-Hispanic 36.9 36.9 Black/non-Hispanic 10.1 10.1 Asian and mixed race 1.5 1.5 Marital status Married 42.5 62.9 Living alone 7.8 — Patient relationship to caregiver Mother 42.3 — Father 8.0 — Spouse 36.3 — Nonkin and other 13.4 — Enabling factors Income
Note: N = 537. Factors organized according to “Behavioral Model of Health Services Use” (Andersen & Newman, 1973). Caregiver depression scores (PHQ-9) are for 205 participants.
The nonkin or other category included other relatives (aunt, uncle, cousin, sister- in-law), friends, neighbors, and partners. Caregivers were mostly married (62.9%), but others were divorced or separated (19%), single (12%), or widowed (6.1%). The patients were primarily widowed (44%) or married (42.5%).
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In this mixed ethnic sample only 36.9% (n = 198) were White non-Hispanic, with the majority being Hispanic (n = 268). About two third of the participants of Hispanic origin were from Cuba and one third, mainly more recent immigrants, from South America, Central America, Mexico, and Puerto Rico (n = 72). Eleven percent of respondents identified themselves as “Black,” which included a great majority of Caribbean Americans and a few African Americans. Included in the ethnic category of “Hispanic” were six caregivers self-identified as “Hispanic” and “Black.” In three cases, the ethnic and racial categories were missing. Most patients lived with their caregivers; only 7.8% lived alone at a short distance from the caregivers. The participants had low incomes, especially the patients, of whom 75.2% received less than US$14,000 yearly income. Their caregivers earned slightly more than US$25,000 on average. The patients were moderately impaired and had difficulties with two ADLs and three IADLs on the average. The patient MMSE scores showed one third (33.5%, n = 180) had severe cognitive impairment (scored less than 15), about 27% (26.8%, n = 144) had moderate impairment (score 15 to 23), and approximately 40% (39.7%, n =213) demonstrated mild impairment or normal status (score 24 to 30). Of the patients with severe impairment, 22% (n = 39) were not tested with the MMSE because their dementia was too severe to provide informed con- sent. They were given a score of “0” that was included in the computation of average cognitive ability. Almost half (n = 267, 49.7%) of the caregivers had a perceived need for using ADS and of those with a perceived need most reported (74%) “Yes, I definitely need the service.” The age of these caregivers was comparable to those who saw no need for ADS (59.4, SD = 14.25 years vs. 63.4, SD = 14.71 years). Table 2 lists caregiver demographics and clinical factors (ADLS, IADLS, MMSE score, and Caregiver PHQ-9 score) both groups: caregivers who saw no need for ADS and those who did. Ethnicity was comparable in both groups. There were more women caregivers in the group who expressed need: χ2(1) = 4.27, p < .05. The two groups also differed in income, with low-income participants being more likely to belong to the group expressing need for ADS; however, the difference was not quite statistically significant at p = .08. Table 2 also shows that caregivers of patients with less ability to function were more likely to express a need for ADS. The group needing ADS scored lower on ADL, t(534) = 2.16, p < .05; IADL, t(534) = 6.60, p < .001; and cognitive status, t(534) = 3.98, p < .001. The caregiver groups differed in their depression scores. Caregivers with a need for ADS scored 6.05 (SD = 5.01) on the PHQ-9 measure compared to 4.01 (SD = 3.78) of caregivers without a need. Finally, we examined the group that expressed a need for ADS (n = 267) closer by dividing it into those patients who used ADS (n = 51) and those who did not
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Table 2. Caregiver Sociodemographics and Clinical Characteristics Related to a Perception of Need for Adult Day Care or No Need.
No need (n = 270), % Need (n = 267), % Variables caregivers caregivers Predisposing factors Gender Female 75.1 82.4 Male 24.9 17.6 Ethnicity Hispanic 50.2 50.0 Race White/non-Hispanic 39.0 35.0 Black/non-Hispanic 9.3 13.2 Asian and mixed race 1.5 1.8 Marital Status Married 68.0 57.7 Patient relationship to caregiver Adult child 45.7 54.7 Spouse 42.0 30.7 Nonkin and other 12.3 14.6 Enabling factors Income
Note: N = 537. ADS = adult day health care services; MMSE = Mini-Mental State Examination; PHQ-9 = Patient Health Questionnaire. Factors organized according to “Behavioral Model of Health Services Use” (Andersen & Newman, 1973). Caregiver depression scores (PHQ-9) are for 205 participants.
(n = 216). Table 3 shows patient demographic and clinical characteristics of the ADS user and nonuser groups. There were no significant differences in patient gender, age, ethnicity, caregiver relationship to the patient (adult child, spouse, or other), or patient income. Nevertheless, the patients’ functional status was related
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Table 3. Patient Sociodemographics and Clinical Characteristics of Day Care Users and Nonusers.
Variables Users (n = 51), % Nonusers (n = 216), % Predisposing factors Gender Female 64.7 67.6 Male 35.3 32.4 Ethnicity Hispanic 54.9 48.9 Race White/non-Hispanic 31.4 35.8 Black/non-Hispanic 13.7 13.0 Asian and mixed race 0.0 2.3 Marital status Married 41.2 34.3 Patient relationship to caregiver Adult child 45.1 46.0 Spouse 39.2 28.7 Nonkin and other 15.7 14.3 Enabling factors Income
Note: N = 267. MMSE = Mini-Mental State Examination; PHQ-9 = Patient Health Questionnaire. Factors organized according to “Behavioral Model of Health Services Use” (Andersen & Newman, 1973). Caregiver depression scores (PHQ-9) are for 113 participants. to the use of ADS in that users had a lower ADL score, t(535) = 3.49, p = .001; lower IADL score, t(535) = 6.71, p < .001; and lower cognitive status, t(535) = 8.59, p < .001. In addition to the values on Table 3, the caregivers’ income yielded a significant result, χ2(1) = 8.46, p < .01, in that 16% of the low-income families used ADS compared to only 8% of the high-income families. Finally, caregivers
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who used ADS had more depressive symptoms than those who did not, t(180) = −2.64, p < .001.
Discussion The primary finding of this study conducted in an ethnically diverse, functionally and mostly cognitively impaired population is that less than 1 in 5 (19%) caregiv- ers who had a perceived need for adult day care actually used these services. This study is one of the largest studies conducted to date analyzing variables associ- ated with the use of community-based services (specifically adult day care) by a diverse older adult population. This study included a large percentage of older adult Cuban Americans, the third largest group of Hispanics in the United States (after Mexican Americans and Puerto Rican Americans). This study used a random sampling procedure in a diverse racial and ethnic population and provided evidence consistent with other studies. It showed that race and ethnicity do not appear to affect ADS service use by caregivers in a low- income population (Scharlach et al., 2008; Whittier et al., 2005). Instead, ADS use increases in the context of profound care recipient disability and cognitive impairment (Santos, 2005; Scharlach et al., 2008; Whittier et al., 2005). In addi- tion, the study showed, consistent with other studies of out-of-home services (Douglass & Visconti, 1998; Kosloski & Montgomery, 1994; Kosloski et al., 2002), that the caregiver relationship (i.e., spouse or adult child) had no impact on ADS use. The primary study finding of low use of ADS, even though there was per- ceived need for these services by the caregiver, was not unexpected. According to the Behavioral Model of Health Services Use “need” (i.e., illness severity, dis- tress) is central to use of services. In this study, ADS were used significantly more by caregivers for care recipients with the lowest functional and cognitive status and by caregivers with more depression symptoms. Although there was a “per- ceived need” for services by almost 1 of 2 caregivers, less than 20% of those with a perceived need used services. In explaining these results according to the Behavioral Model of Health Services Use, it may be that cost, distance, available transportation, hours open, and so on (i.e., enabling factors) affected use as well as the family’s lack of knowledge (i.e., predisposing factor) about available services (Scharlach et al., 2006). According to verbal statements of some caregivers in this study, cost was an identified concern, and the “absence” of transportation to the ADS was identified as a potential barrier for use by some caregivers in this and other studies (Skarupski et al., 2008). There is evidence that caregivers may be reluctant to use ADS as they are unable to maintain control and safety for care recipients (i.e., outside of the home) and, consequently, this may result in increased
Downloaded from jag.sagepub.com at OHIO STATE UNIVERSITY LIBRARY on March 6, 2015 200 Journal of Applied Gerontology 33(2) stress and distress (Zarit, Parris Stephens, Townsend, & Greene, 1998). Interestingly, even when ADS are provided free and information about the services is given, these services are often not used (Montgomery & Borgotta, 1989). Individuals with advanced Alzheimer’s disease and other forms of dementia need assistance with ADL and require constant monitoring. Therefore, it is not surprising that ADS participants have greater cognitive impairment. It is anticipated that the inci- dence and prevalence of Alzheimer’s disease and other forms of dementia will increase (Alzheimer’s Association, 2012) as our nation ages. ADS can provide needed social interaction, cognitive stimulation, and physical activity for persons with Alzheimer’s disease and other forms of dementia (Silverstein, Wong, & Brueck, 2010); however, in this study we found very low utilization of ADS for persons with moderate cognitive impairment. Instead, caregivers were more likely to use ADS for a person with severe cognitive impairment. Low use of “out-of-home” services for persons with advanced dementia has been previously observed (Gill et al., 1998). It may be reassuring to fam- ily caregivers that in many states, including Florida (Florida Agency for Health Care Administration, 2011), ADS personnel who have direct contact with clients suffering from Alzheimer’s disease or dementia-related disorders are required to complete addi- tional training (USDHHS [DALTCP], 2006). Nevertheless, concerns about the ability of ADS center staff to provide care and supervision for persons with dementia has been identified as a primary reason for stopping use (Zarit, Parris Stephens, Townsend, Greene, & Leitsch, 1999). ADS were more likely to be used by those seniors having caregivers with lower incomes and used less extensively by those with higher incomes. It may be that families with higher incomes used other services requiring “out-of-pocket” spending, such as private home care services. The national median cost for adult day care services is estimated to be US$60 per day, a figure that has increased by 12.0% since 2009 (Genworth Financial, 2010a). For the Miami-Dade and Broward counties (site of the study), daily ADS costs range from US$35 to US$65, adding up to a median annual cost of US$14,300 (Genworth Financial, 2010b). The average cost for nursing home care nationally in 2011 (private room) was US$87,235 per year. ADS are most often combined with other home- and community-based services adding cost, but there is evidence that ADS and Medicaid home- and community-based services can be cost-saving for states by keeping seniors from entering a nursing home (Felix et al., 2011). The Programs of All-Inclusive Care for the Elderly (PACE), supported by Medicare, provide financial coverage for community-based care, including adult day care, social services, prescription medications, and home care, among other services, to those who qualify (Centers for Medicare and Medicaid Services, 2008). In addition to state and local program funding, funds from the Veterans Administration, the Older Americans Act, the Social Services Block Grant, as
Downloaded from jag.sagepub.com at OHIO STATE UNIVERSITY LIBRARY on March 6, 2015 Brown et al. 201 well as patient payments provide reimbursement for ADS (USDHHS [DALTCP], 2006). ADS programs are sometimes able to provide services based on a sliding- fee scale for individuals who are unable to afford services yet also do not qualify to receive financial support, and many caregivers are able to apply for dependent care tax credits to assist them with the care of their loved ones (AARP, 2010). Local agencies, as well as funding obtained through private fundraising, offer additional leverage for adult day services (USDHHS [DALTCP], 2006). Depression is prevalent in family caregivers of dementia patients (Cuijpers, 2005; Grey, 2003), and in the present study we report increased caregiver depres- sion symptoms associated with ADS use. In a related study (Buscemi, Brown, & Friedemann, 2012) of this caregiver population, the authors examined caregiver strain and depression. Hispanic caregivers were significantly more depressed compared to African Americans and non-Hispanic Whites, but Hispanics did not report more caregiver burden. Hispanic caregivers may not view caregiving as a burden, but they appear to be at risk for untreated depression. There is evidence that older adult Hispanics are at higher risk for underrecognition and inadequate depression treatment (Lewis-Fernandez, Das, Alfonso, Weissman, & Olfson, 2005; USDHHS, 2001). Inadequate detection “in adult Hispanic Americans may be related to language differences, health literacy barriers, somatic presentations, and use of cultural idioms of distress” (Lewis-Fernandez et al., 2005, p. 282). In addition, Hispanic Americans may have differing attitudes about seeking mental health services (Vega et al., 2007) and are at higher risk for not having health insurance, compared to non-Hispanic persons (U.S. Census Bureau, 2007). There are several limitations that should be considered when interpreting these results. First, this study took place in a primarily urban area. It is likely that rural areas would have less ADS options, and the distance from the patient’s home may be a significant barrier to their use. In addition, it is estimated that 29% of adult day care centers have waiting lists (MetLife & MMI, 2010). Second, the ADSs in this large metropolitan center provide services in Spanish, English, and Creole. We recognize language and cultural differences (Whittier et al., 2005) may be a barrier to use of services in other areas, and our finding that ADS use does not vary across race and ethnicity needs to be replicated elsewhere. Third, in this study we report only 7.8% of these individuals lived alone. The fact that few older adults lived alone is a function of the sampling strategy. We did not sample older adults who had no available family close by. Therefore, these results cannot be generalized to the a specific group of older adults. It is estimated 15% of indi- viduals with Alzheimer’s disease and other forms of dementia live alone, although individuals with more cognitive impairment are less likely to live alone, and there may be variation among different ethnic and cultural groups in living arrange- ments (Alzheimer’s Association, 2012).
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Further research is needed to evaluate effective approaches to support the pref- erence of many low-income disabled older adults and their caregivers to remain in the community. As states seek to decrease costs and nursing home placements, the use, cost, and impact of ADS models of care warrant further investigation and action. Family caregivers and older adults need information about the quality, safety, availability, accessibility, and cost of home- and community-based options, so they can actively participate in decisions about service use.
Authors’ Note A version of this study was presented by Brown, E. L. (2010, March), Annual Meeting of the American Association of Geriatric Psychiatry, Savannah, GA.
Declaration of Conflicting Interests Dr. Brown receives research funding support from Pfizer, Inc.
Funding The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This study was supported by Florida International University MBRS grant, SCORE project NIHSO6GM08205 National Institutes of Health, National Institute of General Medical Sciences.
References AARP. (2010). Caregiving Resource Center—all about adult day services. Retrieved from http://www.aarp.org/relationships/caregiving-resource-center/info-10-2010/ pc_all_about_adult_day_services.html Alzheimer’s Association. (2012). Alzheimer’s disease facts and figures. Alzheimer’s and Dementia: The Journal of the Alzheimer’s Association, 8, 131-168. Anderson, K. A., Dabelko-Schoeny, H. I., & Tarrant, S. D. (2012). A constellation of concerns: Exploring the present and the future challenges for adult day services. Home Health Care Management Practice, 24(3), 132-139. Andersen, R., & Newman, J. F. (1973). Societal and individual determinants of medi- cal care utilization in the United States. Milbank Memorial Fund Quarterly, 51, 95-124. Baumgarten, M., Lebel, P., Laprise, H., LeClerc, C., & Quinn, C. (2002). Adult day care for the frail elderly: Outcomes, satisfaction, and cost. Journal of Aging and Health, 14(2), 237-259. Biegel, D., Bass, D., Schulz, R., & Morzycz, R. (1993). Predictors of in-home and out-of-home service use by family caregivers of Alzheimer’s disease patients. Journal of Aging and Health, 5, 419-438.
Downloaded from jag.sagepub.com at OHIO STATE UNIVERSITY LIBRARY on March 6, 2015 Brown et al. 203
Buscemi, C. P., Brown, E. L., Friedemann, M.-L., & Mauro, A. C. (2012, Feb- ruary). Depression and caregiver burden among Hispanic American families. Poster presented at 26th Annual Conference of the Southern Nursing Research Society, New Orleans, LA. Centers for Medicare and Medicaid Services. (2008). Quick facts about programs of all-inclusive care for the elderly (PACE) (CMS Publication No. 11341). Retrieved from http://www.medicare.gov/publications/pubs/pdf/11341.pdf Conrad, K. J., Hughes, S. L., & Wang, S. (1992). Program factors that influence utili- zation of adult day care. Health Services Research, 27, 481-503. Cuijpers, P. (2005). Depressive disorders in caregivers of dementia patients: A sys- tematic review. Aging and Mental Health, 9, 325-330. Douglass, C., & Visconti, C. (1998). Factors influencing the use of adult day care by individuals with Alzheimer’s disease: A multivariate examination of the Califor- nia Alzheimer’s Disease Diagnostic and Treatment Center Program. Home Health Care Services Quarterly, 17(20), 53-69. Felix, H. C., Mays, G. P., Stewarts, M. K., Cottoms, N., & Olson, M. (2011). Medicaid savings resulted when community health workers matched those with needs to home and community care. Health Affairs, 30(7), 1366-1374. Florida Agency for Health Care Administration. (2011). Adult day care center. Retrieved from http://ahca.myflorida.com/mchq/long_term_care/Assisted_liv- ing/common_files/ADCC_ST_429.pdf Folstein, M. F., Folstein, S. E., & McHugh, P. R. (1975). “Mini-mental state.” A prac- tical method for grading the cognitive state of patients for the clinician. Journal of psychiatric research, 12(3), 189-198. Friedemann, M. L. (2010). Culture, family patterns, and caregiver resource use. Unpub- lished project description submitted to NIH, NIGMS and updated for Florida Inter- national University. IRB. Miami, Florida: : Florida International University. Genworth Financial. (2010a). Genworth 2010 Cost of Care Survey: Home care pro- viders, adult day health care facilities, assisted living facilities and nursing homes (Report No. 48589). Retrieved from http://www.genworth.com/content/ etc/medialib/genworth_v2/pdf/ltc_cost_of_care.Par.12327.File.dat/Florida _gnw.pdf Genworth Financial. (2010b). Florida state-specific data from the Genworth 2010 cost of care survey: Home care providers, adult day health care facilities, assisted living facilities and nursing homes (Report No. 48592). Retrieved from http:// www.genworth.com/content/etc/medialib/genworth_v2/pdf/ltc_cost_of_care. Par.12327.File.dat/Florida_gnw.pdf Gill, C., Hinrichsen, G., & DiGiuseppe, R. (1998). Factors associated with formal service use by family members of patients with dementia. Journal of Applied Gerontology, 17, 38-52.
Downloaded from jag.sagepub.com at OHIO STATE UNIVERSITY LIBRARY on March 6, 2015 204 Journal of Applied Gerontology 33(2)
Gitlin, L. N., Reever, K., Dennis, M. P., Mathieu, E., & Hauck, W. W. (2006). Enhanc- ing quality of life of families who use adult day services: Short- and long-term effects of the Adult Day Services Plus Program. The Gerontologist, 46, 630-639. Gottlieb, B. H., & Johnson, J. (2000). Respite programs for caregivers of persons with dementia: A review with practice implications. Aging and Mental Health, 4, 119-129. Grey, L. (2003). Caregiver depression: A growing mental health concern (Policy Brief). San Francisco, CA: Family Caregiver Alliance, National Center on Caregiving. Henry J. Kaiser Family Foundation. (2007). Medicaid home and community-based service programs: Data update (Report No. 7720). Washington, DC: Author. Retrieved from http://www.kff.org/medicaid/upload/7720.pdf Kosloski, K., & Montgomery, R. (1994). Investigating patterns of service use by fami- lies providing care for dependent elders. Journal of Aging and Health, 6, 334-347. Kosloski, K., Schaefer, J. P., Allwardt, D., Montgomery, R. J., & Karner, T. X. (2002). The role of cultural factors on clients’ attitudes toward caregiving: Perceptions of service delivery, and service utilization. Home Health Care Services Quarterly, 21(3/4), 65-88. Kroenke, K., Spitzer, R. L., & Williams, J. B. (2001). The PHQ-9: Validity of a brief depression severity measure. Journal of General Internal Medicine, 16(9), 606-613. Lewis-Fernandez, R., Das, A. K., Alfonso, C., Weissman, M. M., & Olfson, M. (2005). Depression in US Hispanics: Diagnostic and management considerations in fam- ily practice. Journal of the American Board of Family Practice, 18, 282-296. MacArthur Initiative on Depression and Primary Care. (2009). Patient Health Questionnaire PHQ-9 for depression. Retrieved from http://www.depression- primarycare.org/images/pdf/phq_9_eng.pdf Medicare Adult Day Services Act of 2009 (H.R. 3043) 111th USC, 2009. Metropolitan Life Insurance Company & Mature Market Institute. (2010). The MetLife National Study of Adult Day Services: Providing support to individu- als and their family caregivers (Report No. MMI00156 [1010]). Retrieved from http://www.metlife.com/assets/cao/mmi/publications/studies/2010/mmi-adult- day-services-study.pdf Montgomery, R. J., & Borgotta, E. F. (1985). Family Support Project. Final report to the Administration on Aging. Seattle: University of Washington, Institute on Aging/Long-term Care Center. Montgomery, R. J., & Borgotta, E. F. (1989). The effects of alternative support strate- gies on family caregiving. The Gerontologist, 29, 457-464. Montgomery, R. J., & Kosloski, C. (2001) Executive summary: AOA further analysis and evaluation of the ADDGS project. Unpublished manuscript. Lawrence: Ger- ontology Center, University of Kansas.
Downloaded from jag.sagepub.com at OHIO STATE UNIVERSITY LIBRARY on March 6, 2015 Brown et al. 205
National Center for Health Statistics. (2012). Health, United States, 2011: With spe- cial feature on socioeconomic status and health. Hyattsville, MD: Author. Parsons, M., Senior, H., Kerse, N., Chen, M., Jacobs, S., Vanderhoom, S., et al. (2012). Should care managers for older adults be located in primary care? A randomized controlled trial. Journal of the American Geriatrics Society, 60(1), 86-92. Partners in Caregiving. (2002). National study of adult day services, 2001-2002. Winston-Salem, NC: Wake Forest University, School of Medicine. Robinson, K. M., Buckwalter, K. C., & Reed, D. (2005). Predictors of use of services among dementia caregivers. Western Journal of Nursing Research, 27, 126-140. Scharlach, A. E., Giunta, N., Chun-Chung Chow, J., & Lehning, A. (2008). Racial and ethnic variations in caregiver service use. Journal of Aging and Health, 20(3), 326-346. Scharlach, A. E., Kellam, R., Ong, N., Baskin, A., Goldstein, C., & Fox, P J. (2006). Cultural attitudes and caregiver service use: Lessons from focus groups with racially and ethnically diverse family caregivers. Journal of Gerontological Social Work, 47(1/2), 133-156. Schmitt, E. M., Sands, S. P., Weiss, S., Dowling, G., & Covinsky, K. (2010). Adult day health center participation and health-related quality of life. The Gerontolo- gist, 50(4), 531-540. Silverstein, N. M., Wong, C. M., & Brueck, K. E. (2010). Adult day health care for participants with Alzheimer’s disease. American Journal of Alzheimer’s Disease and Other Dementias, 25, 276-283. Skarupski, K. A., McCann, J. J., Bienias, J. L., Wolinsky, F. D., Aggarwal, N. T., & Evans, D. A. (2008). Use of home-based formal services by adult day care clients with Alzheimer’s disease. Home Health Care Services Quarterly, 27(3), 217-239. U.S. Census Bureau. (2007). The American community—Hispanics: 2004 American Community Survey reports (Report No. ACS-03). Washington, DC: Pew Hispanic Center. Retrieved from http://www.census.gov/prod/2007pubs/acs-03.pdf U.S. Department of Health and Human Services. (2001). Mental health: Culture, race, ethnicity: Supplement to Mental health: Report of the surgeon general. Retrieved from http://www.ncbi.nlm.nih.gov/books/bv.fcgi?rid=hstat5.chapter.971 U.S. Department of Health and Human Services. (2011). National Health Statistics Report Number 38. Washington, DC: Author. U.S. Department of Health and Human Services (Office of Disability, Aging and Long-Term Care Policy). (2006). Adult day services: A key community service for older adults. Washington, DC: Author. Retrieved from http://aspe.hhs.gov/daltcp/ reports/2006/keyADSes.htm Vega, W.A., Karno, M., Alegria, M., Alvidrez, J., Bernal, G., Escamilla, M., et al. (2007). Research issues for improving treatment of U.S. Hispanics with persistent mental disorders. Psychiatric Services, 58, 385-394.
Downloaded from jag.sagepub.com at OHIO STATE UNIVERSITY LIBRARY on March 6, 2015 206 Journal of Applied Gerontology 33(2)
Whittier, S., Scharlach, A. E., & Dal Santo, T. S. (2005). Availability of caregiver sup- port services: Implications for implementation of the National Family Caregiver Support Program. Journal of Aging & Social Policy, 17(1), 45-62. Zank, S., & Schacke, C. (2002). Evaluation of geriatric day care units: Effects on patients and caregivers. The Journal of Gerontology, Series B: Psychological Sci- ences and Social Sciences, 57, 348-357. Zarit, S. H., Kim, K., Femia, E. E., Almeida, D. M., Savla, J., & Molenaar, P. C. M. (2011). Effects of adult day care on daily stress of caregivers: A within-person approach. The Journal of Gerontology, Series B: Psychological Sciences and Social Sciences, 66(5), 538-546. Zarit, S. H., Parris Stephens, M. A., Townsend, A., & Greene, R. (1998). Stress reduc- tion for family caregivers: Effects of adult day care use. Journal of Gerontology: Social Sciences, 53(5), 267-277. Zarit, S. H., Parris Stephens, M. A., Townsend, A., Greene, R., & Leitsch, S. A. (1999). Patterns of adult day service use by family caregivers: A comparison of brief versus sustained use. Family Relations, 48, 355-361.
Author Biographies Ellen L. Brown, EdD, MS, RN, FAAN, is an associate professor at Florida International University, College of Nursing and Health Sciences. Her research interests are focused on improving the health and well-being of older adults receiving long-term care services. She has received awards and NIH funding for her research focused on improving depres- sion care for older adults receiving home healthcare services.
Marie-Luise Friedemann, PhD, RN, is professor emerita at Florida International University, College of Nursing and Health Sciences. She is known for her Framework of Systemic Organization, a theory for nurses and other health professionals, useful in their work with families. Her research interests concern families as well. She has developed an internationally used instrument to measure family health. Within the area of family, she has researched family caregivers of older adults. Her most recent study was an NIH/NIGM-funded SCORE project exploring caregivers’ patterns of caring and use of resources.
Ana C. Mauro, MPH, CHES, obtained her masters in public health at Florida International University. Her research interests include caregivers’ health and their resource use, cardiovascular genetics, as well as the needs of parents who lost a child at the NICU/PICU. She worked as a research assistant for a NIH-funded study at FIU of diverse caregivers in South Florida, working directly with caregivers in data col- lection and analysis. She also conducted research on home health care issues at the University of Bielefeld in Germany as part of the Minority Health International Research Training (MHIRT) program.
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