Informal Caregiving Networks and Use of Formal Services by Inner-City African American Elderly With Dementia

Abstract

Informal caregiving networks are the primary source of support for elderly persons with Alzheimer's disease and other types of dementia. The authors studied a group of 200 urban African American elderly persons with dementia, the characteristics of their informal caregiving networks, and patterns of formal service use to examine relationships between informal caregiving networks and formal service use. Multiple logistic regression analysis indicated that elderly persons were less likely to use formal services when caregivers in the informal networks were more capable of making care-related decisions. In addition, elderly person's functional status, annual income, and Medicaid eligibility were also significantly related to their use of formal services. Practice implications of these findings are discussed.

In 1995, Alzheimer's disease (AD) and related dementia affected approximately two million Americans (General Accounting Office [GAO], 1998). As the population ages, this number is expected to increase, reaching an estimated three million by 2015 (GAO, 1998). The majority of patients with dementia live in the community and are cared for by their family members, relatives, and friends. Providing care to elderly persons with dementia is challenging to many informal caregivers and is related to an increased incidence of depression, anxiety, social isolation, decline in health, strained relationships with others, and feelings of burden among these caregivers (Schulz, O'Brien, Bookwala, & Fleissner, 1995). In addition to providing care for elderly persons with dementia, informal caregivers also play a very important role in connecting these elderly persons to needed formal services (Abel, 1990; Logan & Spitze, 1994). To further understand and explain the limited use of formal services by low-income minority elderly persons, researchers need to carefully examine the role of informal caregiving networks. In this study we focus on a group of inner-city, Afrian American elderly persons with dementia, describe characteristics of their informal caregiving networks and patterns of formal service use, and identify important informal caregiving network characteristics that are related to formal service use.

Literature Review

Informal caregiving networks are particularly important to African American elderly persons (Luckey, 1994; Williams & Dilworth-Anderson, 2002). African American caregivers provide more assistance to more functionally and cognitively impaired elderly persons than do White caregivers (Chadiha, Proctor, Morrow-Howell, Darkwa, & Dore, 1995; Fredman, Daly, & Lazur, 1995). Although African American caregivers often hold strong feelings toward traditional filial responsibility (Cox, 1995; Lawton, Rajagopal, Brody, & Kleban, 1992), informal caregiving networks for African American elderly persons are not an unlimited source of elder care. Many African American caregivers are burdened by their caregiving responsibilities and are more likely to report unmet needs for formal services than are White caregivers (Cox, 1995; Hinrichsen & Ramirez, 1992; Lawton et al., 1992; Miller, Campbell, Farran, Kaufman, & Davis, 1995). In addition, low-income, minority elderly persons are at the particular risk of not using formal services due to the lack of service information, negative attitudes toward formal services, lack of financial resources, or other barriers to services (Luckey, 1994; Yeatts, Crow, & Folts, 1992).

Informal caregivers in the support network play an important role in connecting elderly persons to social services (Abel, 1990; Logan & Spitze, 1994; Luckey, 1994). However, empirical evidence on whether informal caregivers or informal caregiving networks enable or inhibit elderly persons' use of formal services is inconclusive. In relation to the size of informal support networks, Coughlin, McBride, Perozek, and Liu (1992) showed that elderly persons with larger networks received fewer visits from home health agencies. Some other researchers have reported that network size is not related to the use of formal services by dependent elderly persons (Mui & Burnette, 1994; Penrod, Kane, Kane, & Finch, 1995; Williams & Dilworth-Anderson, 2002).

The relationships between informal caregivers and care receivers also influence on elderly persons' use of formal services. Tennstedt, McKinlay, and Sullivan (1989) found that elderly persons with spousal caregivers used fewer formal services than did those with other types of caregivers. Logan and Spitze (1994) also found that elderly persons who were helped by neighbors and friends were more likely to use formal services than were those who were helped by spouses and adult children. However, whether levels of assistance provided by informal caregivers are related to elderly persons' use of formal services is not clear. Williams and Dilworth-Anderson (2002) showed that use of informal care increased the likelihood of use of formal services. In contrast, Caro and Blank (1988) noted that use of informal services was negatively related to use of formal services.

The findings from a small number of studies focusing on elderly persons with dementia also have been inconclusive (Gill, Hinrichsen, & DiGiuseppe, 1998; Kosloski & Montgomery, 1994; Penning, 1995). Penning (1995) showed that elderly persons who were cared for by a larger number of informal caregivers were more likely to use home health services. Kosloski and Montgomery (1994) found that informal caregivers' involvement in personal care did not affect elderly persons' use of formal services. Gill et al. (1998) reported that informal caregivers' appraisal and coping had marginal effects on elderly persons' use of formal services.

Previous researchers have shed light on the importance of informal support networks to the use of formal services. However, several limitations need to be addressed. First, in most of the studies, researchers have focused on racial comparisons. Findings from these studies can be misleading because they assume homogeneity across informal caregiving networks for African American elderly persons (Ory, Yee, Tennstedt, & Schulz, 2000). The within-group variations in health status and socioeconomic status of African American elderly persons also may affect their informal support networks and use of formal services (Chatters, Taylor, & Neighbors, 1989). For example, very few researchers have focused on the informal caregiving networks of minority elderly persons with dementia living in the inner city. The results from mainstream populations may not be helpful in developing programs for this group of elderly persons.

Second, primary caregivers have been the focus of most informal caregiving research (Tennstedt et al., 1989). However, this focus may not be helpful in understanding the informal caregiving networks for African American elderly persons because they are often taken care of by the entire informal network, and caregiving responsibilities are often shared among multiple informal caregivers (Stommel, Given, & Given, 1998). To advance our understanding of informal caregiving for African American elderly persons, researchers need to take entire networks of caregivers into consideration.

Finally, informal caregiving networks are multifaceted, including structure, composition, capability, and emotional closeness (Taylor, 1985). Since the existing studies have focused mainly on informal support networks' structure, composition, and capability, we have limited information about other aspects of the networks, such as the effect of emotional closeness between caregivers and care receivers and caregivers' competence regarding elderly persons' needs and use of formal services. To address these gaps in the literature, focusing on a group of inner-city African American elderly persons with cognitive impairment, this study describes characteristics of informal caregiving networks and patterns of formal service use, and identified important informal caregiving network characteristics that were related to elderly persons' use of formal services.

This study was guided by the Andersen health service utilization model. According to Andersen (1995), service utilization is a function of predisposing, enabling, and need characteristics of the individual. Predisposing factors include both socioeconomic and other structural variables that reflect the propensity of elderly persons' service use; enabling factors include resources that facilitate elderly persons' access to service; and need factors include perceived and evaluated health status that precipitates elderly persons' service use (Andersen, 1995). In this study, the predisposing factors were age and gender. Enabling factors were elderly persons' living arrangements, annual income, Medicaid status, and characteristics of the informal caregiving network. The informal caregiving network variables included network size, relationships between informal caregivers and their receivers, emotional closeness between informal caregivers and care receivers, informal caregivers' decision making ability, and levels of available services provided by informal caregivers. The need factors were elderly persons' functional and cognitive status. The specific questions we addressed in this study were (a) What are the characteristics of informal caregiving networks of inner-city, African American elderly persons with dementia? (b) What are their formal service use patterns? and (c) What factors in the informal caregiving network are related to their use of formal services?

Method

Data used in this analysis were collected for the Memory and Aging Project Satellite (MAPS) of the Washington University Alzheimer's Disease Research Center (ADRC) from 1992 to 1998. The participants in the sample were residents of the St. Louis metropolitan area. They were 55 years or older and had a 6-month history of confusion and memory loss. They allowed home visits by project staff. Elderly patients with a terminal illness, Parkinson's disease, stroke, psychiatric illness, drug abuse, or alcohol abuse were excluded from the study. This analysis was conducted on a subsample of the original survey. This subsample included 200 African American elderly persons who were 65 years old or older with possible dementia and received assistance from informal care networks.

Participants were referred to MAPS through health and social service agencies, the Alzheimer's Association, family members or friends, or other community services such as churches, police and fire departments, or community development program workers. From the 472 inquiries, 420 referrals were made. The study participants represented the population served by MAPS from 1994 to 1998. To ensure the reliability of the assessment, the data were collected through structured in-home assessments with elderly participants and their informants by the same nurse practitioner and the same social worker from MAPS.

During the home visit, the nurse practitioner assessed study participants' cognitive functioning, presence and stage of dementia, and medical history. To ensure the accuracy of the assessment, the nurse practitioner was trained at the Washington University ADRC and was certified in the use of Consortium to Establish a Registry for Alzheimer's Disease.

Dementia severity was assessed using the Clinical Dementia Rating (CDR; Morris, 1993). This clinical assessment scale is designed to establish a diagnosis of AD and then to rate the severity of dementia. The six areas noted in CDR are memory, orientation, judgment and problem solving, personal care, home and hobbies, and community affairs. Each area is rated on the following scale ranging from 0 to 3: 0 (no dementia), 0.5 (questionable dementia), 1 (mild dementia), 2 (moderate dementia), and 3 (severe dementia). The scores from each area were added to create a global rating. The reliability of the nurse's diagnosis of dementia was established by comparison of her scores on the CDR rating to a physician's assessment of the same patient. In diagnosis of AD, 80 consecutive cases showed 100% agreement and a kappa of .80 for the stage of dementia.

As part of the clinical interview, the social worker assessed cognitive function using the Mini-Mental Status Test (MMSE; Folstein, Folstein, & McHugh, 1975) and the Short Blessed Memory Orientation and Concentration Test (Katzman et al., 1983). During the home visit, the social worker also interviewed elderly participants and their caregivers and collected information on the elderly person's income, benefits status, and use of different types of formal services. The social worker assessed activities of daily living (ADL) and instrumental activities of daily living (IADL) in the areas of toileting, feeding, dressing, grooming, ambulating, bathing, shopping, food preparation, housekeeping, laundry, transportation, medication administration, money management, and telephone use utilizing the Older Americans Resources and Services interview (Fillenbaum, 1988). The social worker rated the patient as independent or dependent in each area.

At the same time, the social worker also gathered information on formal service use and informal caregiving networks. To document formal service use, elderly persons and their caregivers were presented with a standard list of formal services and asked to identify all services used by the elderly persons at any time during the past 6 months. These services included home-delivered meals, congregate meals, transportation, personal care and homemaker, respite care, home health services, and case management.

The informal caregiving network was defined as a group of family members, relatives, friends, and neighbors who provided assistance to the elderly person. To assess the composition of the informal caregiving network, social workers asked elderly persons or their caregivers to identify up to four caregivers in the informal caregiving networks. The social worker interviewed these caregivers and recorded their relationships to the elderly person. After the interview, the social worker assessed the extent to which caregivers' emotional closeness to the patients, capability in making caregiving-related decisions, and the levels of assistance caregivers were able to provide.

Emotional closeness was defined as caregivers' level of attachment and frequency of contact with the elderly patient and was rated on a 5-point scale ranging from 1 (very distant) to 5 (very close). Caregivers rated as "very close" showed affection and clear evidence of concern about the elder's needs and problems. They were familiar with the elder's family and emotional background.

Decision-making capacity was assessed independent of the caregivers' emotional attachment to the elder. It referred to the extent to which caregivers were able to recognize the functional and safety needs of the elder and their ability to make caregiving-related decisions. Decision-making capacity was rated on a 3-point scale ranging from 1 (not at all capable) to 3 (very capable). Very capable caregivers understood the elder's problems and were willing to make decisions on behalf of the elder even if the decision was upsetting or difficult. Caregivers who were scored as incapable were either unable or very reluctant to manage significant safety or judgment problems presented by the elderly persons or decide on care arrangements.

Levels of assistance referred to the amount of ADL and IADL assistance informal caregivers were able to provide and were rated on the following 5-point scale: 1 (no involvement in care), 2 (sporadic limited IADL care), 3 (regular IADL care), 4 (limited ADL care and regular IADL care), and 5 (intensive ADL and IADL care). To capture the characteristics of informal caregiving networks rather than just the characteristics of individual caregivers, we rated each informal caregiving network on the basis of the best situation the network caregivers had presented. For example, an informal caregiving network was scored as being emotionally close to the elderly person if at least one informal caregiver in the network was emotionally close. Similarly, an informal caregiving network was rated as capable of making caregiving-related decisions if one of the caregivers in the network was capable of doing so. This rating reflects the characteristics of a shared informal caregiving network in which some caregivers may be very close to the care receivers but not available for intensive assistance and some caregivers may be available for hands-on assistance but not able to make decisions. This rating also fits well with the different roles, such as service providers, managers, and negotiators, that informal caregivers play in informal caregiving networks (Horowitz, 1985).

Univariate analyses, including means, medians, and standard deviations, were used to describe sociodemographic characteristics of elderly persons, characteristics of the informal caregiving networks, and the patterns of formal service use. Bivariate analyses, including t tests and chisquares, were used to assess the relationship between characteristics of informal caregiving networks and elderly persons' demographic, functional, and cognitive status. In addition, a multivariate logistic regression model was used to determine the relationship between the characteristics of informal caregiving networks and formal service use by the elderly. To ensure the accuracy of the estimate, we used a regression diagnostic procedure to assess multicollinearity among independent variables in the logistic model. A significant inflation of variance was not evident in this analysis. The significance level was set at p

Results

Description of the Sample

Demographic information about the study sample is presented in Table 1. Participants were predominantly female and unmarried, and 52% lived alone. About 70% had an annual income below $10,000. All the participants were covered by Medicare, 29% were on Medicaid, and 13.4% had private health insurance.

Most of the sample had cognitive and functional impairments. According to the CDR ratings, 23% had very mild cognitive impairment (CDR = 0.5), and the remaining 77% suffered mild to severe dementia (CDR = 1 to 3). The mean MMSE score was 17.2 (SD = 5.79), and the mean Short Blessed Memory Orientation and Concentration Test score was 16.1 (SD = 7.2). In addition, 63% of elderly persons had at least one ADL impairment, and 90% had at least one IADL impairment. On average, elderly persons experienced 1.45 ADL and 6.6 IADL limitations.

Characteristics of Informal Support Networks

Most of the participants had informal caregiving networks. Only 2 of 202 elderly persons had no informal caregivers. all others had at least one informal caregiver, and 7% had four informal caregivers in their network. The average size of the informal network was 1.85.

The characteristics of informal caregiving networks are summarized in Table 2. The informal networks were composed of immediate family members, relatives, friends, and neighbors. Among all the caregivers identified, 18.5% were spouses, 45% were adult children, 26% were other relatives (siblings, grandchildren, nieces, and nephews), and 10.5% were friends and neighbors. Across informal support networks, 64%of elderly persons had at least one informal caregiver who had strong emotional ties to them. However, less than a quarter of elderly persons had informal caregivers who were capable of making caregiving-related decisions. At the same time, a vast majority of elderly persons (81%) had informal caregivers who were available to provide IADL assistance, but only 19.5% had someone to provide ADL assistance on a regular basis. We matched elderly persons' functional needs with the amount of assistance available in their informal caregiving networks. The results revealed that 50% of the elderly persons did not have an informal caregiving network that was able to provide needed assistance, especially for persons with ADL dependency and persons living alone.

The Patterns of Formal Service Use

Presented in Table 3 are the patterns of formal service use by elderly persons over the 6 months preceding the assessment. Despite their substantial ADL and IADL needs, only half (49.5%) used at least one of the seven formal services included in the study. Personal care and homemaker (25.2%), case management (22.8%), and home-delivered meals (21.9%) were the most frequently used formal services. Among those who used formal services, elderly persons used an average of 2.5 types of formal services, with a range of 1 to 7.

Relationships Between Informal Caregiving Networks and Use of Formal Services

The results from a multivariate logistic regression estimating the relationship between the characteristics of the informal caregiving networks and elderly persons' use of formal services are summarized in Table 4. The overall regression model was statistically significant [[chi]^sup 2^(14, N = 200) = 42.94, p

Discussion

We examined the relationship between informal support and formal service use in a cohort of cognitively impaired, isolated urban African American elderly persons who have been overlooked in the past. This study had several important limitations. First, the ratings on characteristics of informal caregiving networks might be biased toward an overestimate of the strength of informal caregiving networks. For example, although an informal caregiving network could be identified as being emotionally close to an elder, this rating did not imply that each informal caregiver in the network was equally close to the elder emotionally. In other words, some informal caregivers in a network who were scored as emotionally close could have been emotionally distant to the elder. The emotional closeness rating was based on the presence of at least one informal caregiver in the network and not on the network as a whole.

Second, data used in this study were collected cross-sectionally. Therefore, the relationships found in this study were correlational. Third, elderly persons in this study were isolated and referred to the project through social service agencies, police, and family members because of the elder's cognitive and functional impairments, problem behaviors, or concerns of safety. Consequently, findings from this study may not be generalizable to other regions and other groups of elderly persons.

Despite the above limitations, the project reached a group of African American elderly persons diagnosed with AD and living in an inner-city area. Using these data, this study provided additional insight into the formal service use pattern of this group of elderly persons because elderly persons in this study had had not been systematically connected to formal service networks.

This study produced several important findings. Similar to previous studies, most elderly persons in this study had informal caregiving networks that included spouses, children, other relatives, or friends; and had strong emotional ties to their informal caregiving networks (Lawton et al., 1992; Miller, McFall, & Campbell, 1994; Thornton, White-Means, & Choi, 1993). However, the study findings further demonstrated that informal caregiving networks were challenged in their ability to meet all the needs presented by elderly persons. Although 62% of informal caregiving networks were able to provide IADL assistance, only about 20% were able to provide both IADL and ADL assistance. As a result, more than three quarters of elderly persons with ADL needs had an informal caregiving network that was not able to provide needed assistance. This finding suggests that since ADL assistance is more intensive and demanding than IADL assistance, informal caregivers either may not be able or willing to provide ADL assistance. To better meet elderly persons' needs, ADL assistance seems to be critical.

Although families play an important role in making carerelated decisions for elderly persons with cognitive impairments (Deimling & Smerglia, 1992), informal caregivers in this study faced difficulties in making these decisions. Caregivers in the informal networks for 80% of the elderly persons had difficulties in making care-related decisions. However, the available data did not allow us to pinpoint the particular difficulties that informal caregivers encountered in the decision-making process. The literature has suggested that the informal caregiving networks of African American elderly persons tend to be broad and are likely to include members of extended families (Cox, 1993; Lawton et al., 1992). It is possible that a large informal caregiving network allows the division of caregiving responsibilities, but the expansion beyond the immediate family can increase the complexity of care-related decision making. Also, many of the families interviewed had not designated a primary caregiver who was organizing and coordinating caregiving activities.

The primary interest of this study was to assess the relationship between the characteristics of informal caregiving networks and elderly persons' use of formal services. Among these characteristics, decision-making capacity was significantly related to use of formal services. When informal caregivers were more capable of making care-related decisions, elderly persons were less likely to use formal services. Expanding on what we know about the importance of informal caregivers in elderly persons' use of formal services, this finding suggests that informal caregivers seem determined to use informal services. This determination apparently reflects informal caregivers' preference of informal care. It also may indicate the lack of knowledge and awareness of formal services and the lack of involvement of service providers in the care of the elderly person. The other characteristics of the informal caregiving network, including size, relationships between caregivers and care receivers, levels of assistance, and emotional closeness were not related to formal service use. The lack of significance of these variables suggests that the use of formal services is an outcome of a complex process to this group of highly vulnerable elderly persons. Different characteristics of informal support networks do not contribute equally to elderly persons' use of formal services.

In addition to care-related decision-making capacity, the financial enabling factors-elderly person's low-income status and Medicaid eligibility-were significantly related to elderly persons' use of formal services. Compared with their high-income counterparts, low-income elderly persons were less likely to use formal services. Elderly persons with Medicaid were more likely to use formal services than those without Medicaid. These two findings highlight the importance of Medicaid in helping low-income elderly persons use formal services. Not only does Medicaid pay for the needed services, more importantly, it also breaks service barriers that isolate low-income, minority elderly persons.

Consistent with findings of the few existing studies on formal service use by AD patients, this study showed that elderly person's functional status was significantly related to his/her use of formal services (Gill et al., 1998; Kosloski & Montgomery, 1994; Penning, 1995). This finding confirms that informal support networks are not unlimited sources of elder care. Elderly persons in this study relied mainly on their informal caregivers for assistance. However, elderly persons with more severe functional impairments might have to use formal services because their informal support networks simply could not meet their service needs.

Although this study was conducted in a specific inner-city area, findings from this study have important implications for service providers. First, very few researchers have focused on this highly vulnerable group of elderly persons with dementia who are isolated, poor, and living in unsafe areas. Even though the problems and difficulties experienced by this group are challenging to the current social services delivery system, they should not be ignored. Research focusing on caregiving decision-making processes will help social service agencies to provide needed information that enables informal caregivers to make informed decisions.

Second, given the importance of financial enabling factors in the use of formal services, linking elderly persons to appropriate resources including Medicaid may be the first step in helping low-income, minority elderly persons get access to formal services. However, the stigma attached to welfare programs, complicated eligibility criteria, and government red tape have made the Medicaid program lose its appeal to many elderly persons (Yeatts et al., 1992). In this study, the project social worker reported that 80% of elderly persons might be eligible for the Medicaid programs, but only 29% were enrolled at the time of interview. When provided with professional help in negotiating the complex application process, all of the eligible individuals were subsequently approved for Medicaid benefits. The success can be attributed to the intensive outreach and education efforts made by the project staff and collaboration among different service providers in the communities (Edwards, Baum, Meisel, & Depke, et al., 1999). Grant funding that provides financial assistance can be helpful in reducing the financial burden shouldered by low-income elderly persons and their families.

Third, minority elderly persons, especially African Americans, are very well-connected to their informal caregiving networks. Our findings demonstrate that the presence of a support network docs not necessarily imply that this network is capable of providing needed assistance. An in-depth and complete assessment of the strengths and weaknesses of the whole informal caregiving network is important and necessary in developing an adequate care plan.

Finally, African American elderly persons may prefer assistance from informal caregiving networks and seem hesitant to use formal social and health services. Service providers should respect this preference and understand their hesitation. At the same time, service providers are responsible to help their clients make an informed decision. To do so, service providers need to provide elderly persons and their informal caregivers with accurate analyses of their service needs and information on available services and resources in the community. In addition, service providers should help elderly persons and their caregivers identify potential service African Americanbarriers and develop strategies to overcome these barriers.

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Hong Li, PhD, is an assistant professor, School of Social Work, University of Illinois at Urbana-Champaign and is also a fellow of the John A. Hartford Geriatric Social Work Faculty Scholars Program. Dorothy Edwards, PhD, is associate professor, Occupational Therapy and Neurology, Washington University School of Medicine in St. Louis, and has been an investigator in the Washington University Alzheimer's Disease Research Center since 1982. Nancy Morrow-Howell, PhD, is professor and chair of the PhD program, George Warren Brown School of Social Work, Washington University in St. Louis. Correspondence regarding this article may be addressed to the first author at hongli@uiuc.edu or the School of Social Work, University of Illinois at Urbana-Champaign, 1209 West Oregon, Room 339, Urbana, IL 61801.

Authors' note. This work was supported by Grant AG 05681 from the National Institute on Aging and U.S. Public Health Services. We thank Dr. Susan Hughes, Dr. Donald Briedland, and Dr. Patsy Tracy for their helpful comments on an earlier version of this article.

Manuscript received: May 28, 2002

Revised: October 21, 2002

Accepted: September 4, 2003

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