Increasing the use of formal services by caregivers of people with dementia.
Abstract: This study evaluated the impact of an information and referral intervention designed to help family caregivers of people with dementia obtain needed health and human services. Caregivers (N = 608) of community-residing people with dementia were surveyed about their need for and use of community services. Of the 608 caregivers, 203 agreed to be referred to a staff member of an Alzheimer's Association chapter to get help finding needed health and community services. The results of a logistic regression indicated that education, marital status, and perceptions about the helpfulness of services were significant predictors of wanting a referral. The information and referral help given by staff of the Alzheimer's Association chapters resulted in a significant increase in the use of human services, but no change in the use of health services. Practice implications are discussed.

Key words: Alzheimer's Association; dementia; family caregivers; information; referral
Subject: Dementia (Influence)
Dementia (Care and treatment)
Authors: McCallion, Philip
Toseland, Ronald W.
Gerber, Todd
Banks, Steven
Pub Date: 07/01/2004
Publication: Name: Social Work Publisher: National Association of Social Workers Audience: Academic Format: Magazine/Journal Subject: Sociology and social work Copyright: COPYRIGHT 2004 National Association of Social Workers ISSN: 0037-8046
Issue: Date: July, 2004 Source Volume: 49 Source Issue: 3
Topic: Event Code: 970 Government domestic functions
Geographic: Geographic Scope: United States Geographic Name: United States Geographic Code: 1USA United States
Accession Number: 119780301
Full Text: Four million individuals in the United, States are believed to suffer from Alzheimer s disease and other dementias (AD), and the number of people with dementia is projected to quadruple in 50 years (Brookmeyer, Gray, & Kawas, 1998). The important role that family caregivers play in maintaining individuals with AD in the community has been widely documented (Toseland, Smith, & McCallion, 2001). For example, Arno and colleagues (1999) estimated that the national economic value of informal caring for people with dementia is $196 billion. Because care needs increase substantially as dementia progresses, professional health and human services are needed to supplement the care provided by family members and to support their efforts. Although studies have found a great need for services among people with AD and their primary informal caregivers, low levels of service utilization have been reported (for example, Adler, Kuskowski, & Mortimer, 1995; Cotrell, 1996; Kosloski & Montgomery, 1992). Therefore, interventions that encourage and support greater use of formal services appear warranted.

Social workers play a vital role in meeting the biopsychosocial needs of community-residing people with dementia and their family caregivers. For example, hospital social workers frequently work with caregivers when a crisis occurs and when care needs exceed caregivers' capacities. Social workers in family services agencies and employee assistance programs are called on to work with caregivers of people with dementia in community settings. An important element in these situations is information and referral, often to local chapters of the Alzheimer's Association (AA). However, no information is available about who is likely to benefit from referral to a local AA chapter, of who is likely to want follow-up services after a referral. Therefore, the usefulness of referrals, and the effectiveness of interventions resulting from these referrals, would be enhanced by greater understanding of the helpfulness of AA interventions.

With funding from the National Alzheimer's Association, we undertook a two-part study to develop a fuller picture of service use by people with dementia and their family caregivers. Findings that offer a comprehensive picture of service use by a randomly drawn, representative group of 608 caregivers in New York State have been reported elsewhere (Toseland et al., 1999). In the second part of the study, caregivers were asked if they wanted the social work interviewer to make a referral on their behalf to their local AA chapter. Reported here are the characteristics of the caregiver and the caregiving situation likely to predict a willingness to be referred for chapter service; a controlled evaluation of whether referral to an AA chapter resulted in increased use of formal services after six weeks; and the types of follow-up undertaken by AA chapter staff on receipt of a referral.

Method

Participants

A random sample of community-residing people with AD and their caregivers was obtained using 1995, 1996, and 1997 reports to the New York State Alzheimer Disease and Other Disorders Registry, where the full range of dementias and all stages of dementia are represented. The procedures used to construct a representative and current sample are reported elsewhere (Toseland et al., 2001). Seven hundred and eighty five primary caregivers of community-residing people with AD were identified and screened. Telephone interviews were conducted with 608 of the individuals, a response rate of 77.5 percent. Of the nonrespondents, 106 declined to be interviewed, 44 missed three or more scheduled interviews, 20 could not be located, and seven were too ill to be interviewed.

Design

All caregivers who agreed to participate were sent a letter about the study and a copy of the protocol. Trained interviewers conducted interviews by telephone. The initial interviews took 45 to 90 minutes to complete. Additional information about the survey and about the use of health and human services by survey participants can be found elsewhere (Toseland et al., 1999).

At the end of the interview, all interviewees were asked if they would like to be referred to a local AA chapter. All 203 participants who agreed to be contacted were informed that they would be contacted by the AA chapter within eight weeks and that they would be asked to complete a second shorter questionnaire six weeks after the first interview. In the second interview, which took approximately 15 minutes to complete, respondents were asked about service use since the previous interview and the type of follow-up they received from the AA chapter. Participants were randomly assigned to an intervention condition or a waitlist control condition. Intervention participants were referred immediately to an AA chapter, whereas wait-list control participants were referred after a six-week follow-up. Participants received $10 on completion of the second interview.

Data

Data were gathered to address the following: predicting willingness to be contacted by an AA chapter, assessing the impact of AA chapter referral on use of formal services, and understanding AA chapters' responses to referrals.

Predicting Willingness to Be Contacted by an AA Chapter. The dependent or outcome variable was based on a caregiver's yes or no response about his or her willingness to be contacted about potential services by staff from their local AA chapter. Predictor variables considered included

* demographics--Demographic information included age, gender, marital status, race and ethnicity (white or not white), and education (more than high school education or high school education or less).

* caregiver-care recipient relationship--Questions included whether the caregiver and care recipient shared the same household, and whether the caregiver was or was not the spouse of the care recipient.

* other caregiving responsibilities--Caregivers were asked to indicate whether they were or were not caring for another disabled family member.

* availability of health insurance--Absence or presence of Medicare and Medicaid for the care recipient was assessed.

* transportation--Two questions addressed the availability of private and public transportation to help the caregiver transport the care recipient to appointments.

* care recipient problem behaviors--A modified version of the Cohen-Mansfield Agitation Inventory (CMAI) (Cohen-Mansfield, 1986) was used to assess the frequency of agitated behavior among care recipients. Caregivers were asked how often, on seven-point scales, the care recipient usually exhibits aggressive, physically nonaggressive, and verbally aggressive behavior. The CMAI has reported good interrater reliability (.88). In addition, the specific behaviors contained in the inventory have been shown to constitute three broader underlying factors, aggressive behavior, physically nonaggressive behavior, and verbally aggressive behavior that were measured in this study (Cohen-Mansfield, Marx, & Rosenthal, 1989).

* caregiver perceived burden--Caregiver perceived burden was assessed using the Screen for Caregiver Burden (Vitaliano, Russo, Young, Becker, & Maiuro, 1991). This 25-item scale uses data from both the care recipient and the caregiver to rate objective burden (OB) and subjective burden (SB). The OB score indicates the number of experiences that have occurred. Subjective burden for the same items is rated as level of distress experienced. Internal consistency coefficients of .85 and .88 have been reported for OB and SB, respectively, as well as good test-retest reliability (.70), construct and criterion validity, and sensitivity to changes over time.

* functional status of the care recipient--To assess functional status of the care recipient, the caregiver was asked to respond to questions from the Physical Activities of Daily Living (PADL) section of the Older Americans Research and Services Center instrument (OARS) (Fillenbaum, 1978). The OARS PADL scale consists of eight items: bathing, dressing, feeding, transfer, continence, toileting, walking, and grooming. For each item, respondents are asked whether the care recipient can perform the activity without help = 2, with some help = 1, or not at all = 0. The psychometric properties of the OARS ADL scales have been extensively examined as part of the overall testing of the OARS instrument and are well established

* stage of dementia--Interviewers read the symptom descriptions adapted from the Global Deterioration Scale (GDS) (Reisberg, 1985) to the caregiver to establish the care recipient's stage of dementia. The GDS enables clinicians to accurately quantify the nature and magnitude of impairment in Alzheimer's disease. Interrater reliability has been found to be high (Gottlieb, Gur, & Gur, 1988), and the GDS has been validated against behavioral, neuroanatomic, and neurophysiologic measures (Reisberg, Ferris, DeLeon, & Crook, 1982).

* caregiver's perceived health--Caregivers were asked to rate their perceived health status, negative impact of caregiving on their health, and negative impact of their health on caregiving. Several studies have found that global health questions provide a reliable picture of overall health status (Idler & Kasl, 1991; Peak, Toseland, & Banks, 1995; Wolinsky & Johnson, 1992).

* caregiver perceived need for services--Caregivers were also asked to rate on a three-point scale whether additional services would make it easier to care for the person with AD, and the extent to which additional services would prevent institutionalization of the care recipient.

Assessing the Impact of the Referral on the Use of Formal Services. Consistent with the recommendations of Biegel and colleagues (1993), this study considered a larger and theoretically based range of services than in previous studies. The survey instrument included a comprehensive list of 33 health and human services (see Table 1) identified in earlier studies as potentially useful to people with AD and their family caregivers (Toseland, 1990; Toseland et al., 1996). The 33 services were placed in the human services and health services categories on the basis of agreement among three independent raters who were experts in caregiver needs and services. The interviewers developed written definitions for each service and measured differences in services use over a six-week period.

Understanding AA Chapters' Responses to the Referrals. Project staff periodically contacted services staff at the participating AA chapters to verify that they had received the referrals and to gather information on their responses to those referrals.

Data Analyses

Data analyses addressed the following: predicting willingness to be referred to an AA chapter and assessing the impact of AA chapter referral on use of formal services, and understanding AA chapters' responses to referrals.

Predicting Willingness to be Referred to an AA Chapter. Logistic regression was used to identify the characteristics of caregivers that predicted their willingness to have the interviewer make a referral to a local AA chapter. Logistic coefficients indicate the direction and magnitude of each independent variable's association with the outcome variable, and the Wald [chi square] statistic measures the relative impact of each independent variable (Selvin, 1991). Furthermore, the odds ratio provides a probability estimate of the relative effect that each independent variable had on willingness to be referred to an AA chapter.

Assessing the Impact of AA Chapter Referral on Use of Formal Services. To test whether referral to an AA chapter resulted in increased use of services over time compared with the control group, to whom the referral had not yet been made, outcome variables were analyzed using random effects regression models (RERMs) (Gibbons et al., 1993; Hedeker, 1995). Of primary interest in this study is the Condition x Time interactions from baseline to six weeks. Our RERM included adjustments for first-order autoregressive error terms, which indicate whether data collected during follow-up assessments were correlated with data collected during the previous period.

Results

Characteristics of the Caregivers

The average respondent was white, 60 years old, with at least some college education, and was the daughter of the person with dementia (Table 2). However, older and younger people, spouses, male caregivers, and people of diverse ethnicity were represented in the sample. Caregiving was very demanding for study respondents. More than 28 percent of respondents reported that their health was fair or poor, 51 percent reported that health limitations affected their ability to provide care, and 25 percent of respondents reported that caregiving had a negative effect on their health. The average caregiver in the study had been providing care for more than five years, more than 68 percent of the respondents lived with the care recipient, and more than 14 percent were caring for another family member with a disability. Results from the CMAI indicated that almost 25 percent of care recipients had exhibited physically aggressive behaviors such as hitting, 57 percent had exhibited physically nonaggressive behaviors such as wandering, and 50 percent had exhibited verbally aggressive behaviors such as yelling (Table 3). It is not surprising, therefore, that respondents reported high levels of OB (M= 10.4, SD = 4.8) and SB (M= 39.1, SD= 11.6) on the Screen for Caregiver Burden (Vitaliano et al., 1991; personal communication with P. Vitaliano, professor, University of Washington, Seattle, March 31, 1998).

Predictors of Willingness to Be Referred to an AA Chapter

Results of the logistic regression model are presented in Table 4. Twenty-three independent variables were entered into a logistic regression model and four were found to be significant predictors (at the .05 level) of willingness to be referred to an AA chapter. The addition of the odds ratios indicates that caregivers with a high school education or less were 63 percent more likely to want to be referred to an AA chapter; unmarried caregivers were 39 percent more likely to want a referral; caregivers who felt that more services would make it easier to provide care were 36 percent more likely to want a referral; and caregivers who believed more services would help ensure that the person with dementia remained at home were 30 percent more likely to want a referral. Using a less stringent significance level of .10, three other predictors emerged: (1) the person with dementia displaying verbal aggression (11 percent more likely to want to be referred), (2) the caregiver reporting OB (6 percent more likely), and (3) the caregiver lacking own transportation (23 percent more likely).

Impact of an AA Chapter Referral on Use of Formal Services

A sample of 203 caregivers who agreed to be referred to the AA chapter was accumulated over time. Their demographics were similar to those found for the overall sample of 608. However, they were more likely to be unmarried and to have a high school education or less. The 203 caregivers were randomly assigned to treatment (II) and wait-list control (WC) conditions. Demographic variables for the two groups were compared using Student's t and [chi square] tests and no significant differences were found. Participants in both conditions increased their use of human services over time, but the increase for the II condition participants was significantly greater than for the WC participants (Table 5). Caregivers in the II condition were using an additional 3.7 human services six weeks after referral to an AA chapter, whereas those in the WC condition increased their services use by 1.6 new human services. There were no significant group, time, or interaction effects for use of health services.

Understanding AA Chapters' Responses to Referrals

Respondents in the treatment condition were asked to specify what follow-up they received from the AA chapter as a result of the referral. Twenty-one percent indicated that they had no contact with the chapter. However, 74 percent reported receiving a telephone call from AA chapter staff, 79 percent received a mailed packet of information, 13 percent made calls to the chapter themselves, 5 percent visited the chapter office, and 3 percent reported that a staff member from the chapter visited them in their homes. Telephone interviews with AA chapter staff indicated that they had difficulty getting in touch with many of the caregivers by telephone. They also reported that, when contacted, a number of caregivers were uninterested in receiving services but expressed appreciation at being contacted and knowing where they could turn in the future for service needs.

Discussion

The long duration of caregiving and the objective and subjective burden reported by the respondents strongly suggest that caregivers of people with dementia are under strain and in need of additional assistance. Having access to a large representative sample of caregivers and the cooperation of all I 0 chapters of the Alzheimer's Association in New York State presented a unique opportunity to explore ways to increase caregivers' exposure to information about formal services and to investigate whether information and referral services actually led to increased services use.

The finding that caregivers with a high school education or less were more likely to want to be referred to an AA chapter suggests that local AA chapters should consider targeting outreach efforts to caregivers with less formal education. This might include, for example, making sure that the reading levels of brochures, posters, and other publicity materials are appropriate for people with little formal education. Local AA chapters may also use this information to educate referral sources about the types of families that are most likely to want a referral, and to tailor services to better meet the needs of families with less formal education.

Further investigation is needed on why those with a high school education or less are more likely than those with a college education to want to be referred to AA chapters. Perhaps those with a college education already have access to sufficient information about services and resources, feel better able to met their own needs and to contact needed resources themselves, have access to other resources, or assume that chapter assistance would not meet their needs. However, local AA chapter staff and social workers in hospital and family services settings should be careful not to assume that caregivers with a college education have more information than other caregivers. It is important for social workers to check that those who are not interested in help from local AA chapters make informed choices about services use.

The finding that unmarried caregivers are more likely to want a referral to an AA chapter may suggest that unmarried caregivers need more formal assistance to care for a person with dementia in the community. Not living with the person with dementia may also make it difficult to monitor the situation and provide care when it is needed. AA chapter staff and social workers from other agencies should identify the informal caregivers of unmarried dementia patients, and pay particular attention to helping them obtain needed community services.

The finding that spouse caregivers are less likely to request a referral may reflect the fact that they feel that it is their duty to provide care for their mate, and that nobody can provide the type of high-quality care that they provide. Social workers should be concerned that this is an informed choice, based on spouse caregivers having resources to maintain caregiving, as opposed to feeling that it is inappropriate to ask for help. There are important roles for social workers in helping spouse caregivers acknowledge needs for assistance, to increase appreciation of the potential benefits of a referral to a local AA chapter, to facilitate greater assistance from other family members, and to link caregivers to appropriate sources of formal assistance.

Willingness to be referred to a local AA chapter was also predicted by caregivers answering affirmatively to questions about whether more services would make it easier to provide care and whether more services would ensure that the person with dementia would remain at home. Social workers can offer support and education, help caregivers draw on other informal sources of support, help them obtain services from AA chapters and other formal community services, prepare service plans, coordinate services, and manage ongoing care plans for caregivers who respond affirmatively to these two questions. Combined, the two previously mentioned questions may form an effective, easily administered screening tool to identify caregivers who feel overwhelmed by their situation. Verbal aggression by the person with dementia, perceptions of objective burden by the caregiver, and lack of own transportation are less significant predictors of willingness to be referred. Absence of own transportation may limit a caregiver's ability to gain access to services or meet daily needs of the household such as grocery shopping. When lack of own transportation is noted, social workers should explore referrals that can help overcome this limitation, such as Meals on Wheels, home delivery services, and senior transportation programs.

The results of this study suggest that information and referral by AA chapters resulted in a significant increase in use of human services but did not result in significant changes in use of health care services. Caregivers may feel entitled to health care services and reach out to and obtain them on their own, or they may turn to their health professionals for referrals to additional health care services. Local AA chapters are human services rather than health services agencies and, therefore, may be more inclined to connect families with human services such as respite care and day care than with health care services. Increased use of human services rather than health care services may, therefore, be the expected outcome. It is important to consider that change in service use was measured over a six-week period. Medical appointments and referrals to specialized health care services may take more time to set up. Perhaps if the second questionnaire had been administered after a longer period, differences in health services use might have been found.

Additional research is needed to understand the time needed to properly assess the effectiveness of an AA chapter intervention. Nevertheless, it is an important finding that within six weeks a relatively low-cost information and referral intervention by AA chapters resulted in significantly increased services use. It is also noteworthy that caregivers in the WC condition also increased their services use. The interviewers reported that during administration of the first questionnaire many caregivers asked about particular human services and wanted to discuss their use. Thus, simply administering the questionnaire seems to have prompted some caregivers to seek services on their own.

Anecdotal reports from AA chapter staff also yielded information on another potential benefit of the intervention. Staff reported that some family members were satisfied that the AA chapter had contacted them, and that they would know whom to call in the future if problems arose. An overlooked benefit of intervention programs that provide information about how to gain access to community services is that they increase caregivers' feeling of confidence that they can manage the situation. Thus, information and referral services by AA chapter staff, as well as by social workers in other community agencies, can help reduce the strain and anxiety that result from lack of knowledge about services and who to call if caregiving problems arise.

Approximately 20 percent of the respondents reported that they were not contacted by an AA chapter. Communication between research staff and AA chapter staff about individuals who claimed not to be contacted, however, indicated that some families who reported no contact with AA chapter staff were contacted by the AA chapter but chose not to use services. Chapter staff also reported difficulty in contacting some caregivers by telephone. The research interviewers had similar experiences when trying to contact some caregivers to set up interviews. For example, an average of three to four calls were needed to complete each interview. Caregivers reported that they do not answer the telephone because they do not want to talk with telemarketers, and because they are occupied with caregiving responsibilities. This suggests that when social workers make referrals to AA chapters, it would be helpful to include information on good days and times to contact the caregiver. It also suggests that it would be helpful to have brochures and other materials on AA chapter programs available so that caregivers can initiate contacts themselves. AA chapters need to examine their means of responding to referrals. For example, more use of mailed materials, encouragement to families to visit the AA chapter offices, and exploration of opportunities to offer services in caregivers' homes should be considered.

Conclusion

As the number of people with dementia increases, there will be increased burden on family caregivers to maintain their loved ones at home with dignity. Social workers have an important role in assisting family caregivers in this important endeavor. Local AA chapters are an important resource for social workers and for caregivers of dementia patients. The findings reported here should help social workers make the best use of this important resource.

References

Adler, G., Kuskowski, M., & Mortimer, J. (1995). Respite use in dementia patients. Clinical Gerontologist, 15(3), 17-30.

Arno, P. S., Levine, C., & Memmott, M. M. (1999). The economic value of informal caregiving. Health Affairs, 18, 182-188.

Biegel, D., Bass, D. M., Schulz, R., & Morycz, R, (1993). Predictors of in-home and out-of-home services use by family caregivers of Alzheimer's disease patients. Journal of Aging and Health, 5, 419-438.

Brookmeyer, R., Gray, S., & Kawas, C. (1998). Projections of Alzheimer's disease in the United States and the public health impact of delaying disease onset. American Journal of Public Health, 88, 1337-1342.

Cohen-Mansfield, J. (1986). Agitated behaviors in the elderly, II: Preliminary results of the cognitively deteriorated. Journal of the American Geriatrics Society, 34, 722-727.

Cohen-Mansfield, J., Marx, M., & Rosenthal, A. (1989). A description of agitation in a nursing home. Journals of Gerontology: Medical Sciences, 44(3), M77-M84.

Cotrell, V. (1996). Respite use by dementia caregivers: Preferences and reasons for initial use. Journal of Gerontological Social Work, 26(3/4), 35-55.

Fillenbaum, G. (1978). Multidimensional functional assessment: The OARS methodology. Durham, NC: Duke University Center for the Study of Aging and Human Development.

Gibbons, R., Hedeker, D., Elkin, I., Waternaux, C., Kraemer, H., Greenhouse, J., Shea, M., Imber, S., Sotsky, S., & Watkins, J. (1993). Some conceptual and statistical issues in analysis of longitudinal psychiatric data. Archives General Psychiatry, 50, 739-750.

Gottlieb, G., Gur, R. E., & Gur, R. C. (1988). Reliability of psychiatric scales in patients with dementia of the Alzheimer type. American Journal of Psychiatry, 145, 857-860.

Hedeker, D. (1995, August). Longitudinal data analysis. Workshop, manual, and computer program offered at the John F. Kennedy School of Government, Harvard University, Cambridge, MA.

Idler, E., & Kasl, S. (1991). Health perceptions and survival: Do global evaluations of health status really predict mortality? Journal of Gerontology, 46, 55-65.

Kosloski, K., & Montgomery, R. (1992). Perceptions of respite services as predictors of utilization. Research on Aging, 15, 399-413.

Peak, T., Toseland, R. W., & Banks, S. M. (1995). The impact of a spouse-caregiver support group on care recipient health care costs. Journal of Aging and Health, 7, 427-449.

Reisberg, B. (1985). Alzheimer's disease update. Psychiatric Annals, 15, 319-322.

Reisberg, B., Ferris, S., DeLeon, M., & Crook, T. (1982). The Global Deterioration Scale for Assessment of Primary Degenerative Dementia. American Journal of Psychiatry, 139, 1136-1139.

Selvin, S. (1991). Statistical analysis for epidemiological data. New York: Oxford University Press.

Toseland, R. (1990). Long-term effectiveness of peer-led and professionally led support groups for family caregivers. Social Service Review, 64, 308-327.

Toseland, R., McCallion, P., Gerber, T., Dawson, C., Gieryic, S., & Guilamo-Ramos, V. (1999). Use of health and human services by community-residing people with dementia. Social Work, 44, 535-548.

Toseland, R., O'Donnell, J. C., Engelhardt, J. B., Hendler, S. A., Thomley, J. E., & Jue, D. (1996). Outpatient geriatric evaluation and management: Results of a randomized trial. Medical Care, 34, 624-640.

Toseland, R., Smith, G., & McCallion, P. (2001). Helping family caregivers. In A. Gitterman (Ed.), Handbook of social work practice with vulnerable and resilient populations (2nd ed., pp. 548-581). New York: Columbia University Press.

Vitaliano, P., Russo, J., Young, H., Becker, J., & Maiuro, R. (1991). The screen for caregiver burden. Gerontologist, 31, 76-83.

Wolinsky, F. D., & Johnson, R. (1992). Perceived health status and mortality among older men and women. Journal of Gerontology, 47, 155-170.

Philip McCallion, PhD, ACSW, is associate professor and director, Center for Excellence in Aging Services, School of Social Welfare, State University of New York at Albany, 135 Western A venue, Albany, NY 12222; e-mail: mcclion@albany.edu.

Ronald W. Toseland, PhD, is professor and director, Institute of Gerontology, School of Social Welfare, State University of New York at Albany. Todd Gerber, MS, is an anaylst, New York State Department of Health, Albany. Steven Banks, PhD, is associate professor of biostatistics, Department of Psychiatry, University of Massachusetts Medical School, Worcester. This research was supported by a grant from the Alzheimer's Association.

Original manuscript received May 16, 2001 Final revision received July 15, 2002 Accepted December 16, 2002
Table I

Health and Human Services

Type of Service

Health
  Outpatient health
  Inpatient health
  Home health aide
  Visiting nurse
  Emergency response system
  Outpatient mental health care
  Inpatient mental health care
  Alzheimer's Disease Assistance Center
  Personal medical alert system
  Nursing home
Human
  Homemaker
  Legal
  Information and referral
  Church, mosque, or synagogue
  Home modification assistance
  Library
  Transportation
  Alzheimer's Association
  In-home respite
  Agency on aging
  Adult day care
  Senior center
  Financial assistance
  Meals on Wheels
  Individual counseling
  Educational programs
  Support group
  Recreation
  Home energy assistance
  Out-of-home respite
  Telephone reassurance
  Family counseling
  Caregiver resource center

Table 2

Selected Characteristics of Participating Caregivers
of People with Alzheimer's
Disease (N = 608)

Variable                        %       M       SD

Age                                    60.6    13.3
Gender
  Female                       73.0
  Male                         27.0
Race or ethnicity
  White                        86.3
  Black                         8.6
  Hispanic/Latino               3.3
  Other                         1.8
Marital status
  Married                      75.5
  Single                        9.5
  Divorced/separated            8.3
  Widowed                       6.7
Education
  Some high school             10.5
  High school degree           27.8
  Some college                 26.0
  College graduate             35.7
Relationship to person with
    dementia
  Spouse                       37.0
  Adult child                  49.3
  Other                        13.7

Table 3

Selected Characteristics of the Caregiving Situation

Variable                        %         Variable        M      SD

Global Deterioration Scale
    (Person with dementia)            Caregiver burden
  Mild                         20.4      Subjective      39.0   11.6
  Moderate                     48.0      Objective       10.8    4.8
  Severe                       31.6
Cohen Mansfield Agitation             ADL impairments     5.4    4.3
    Inventory Subscales
  Physically aggressive        24.9
  Verbally aggressive          50.1
  Physically nonaggressive     57.3
Also caring for another        14.1
    family member

Note: ADL = activities of daily living.

Table 4

Logistic Regression of Willingness of Caregiver to Be Referred to a
Local AA Chapter (N = 608)

Variable                                    [beta]    SE   [chi square]

Caregiver age                                 .00    .00        .01
Caregiver caring for another family
  member                                     -.30    .26       1.40
Caregiver spouse of person with dementia      .12    .17        .48
Caregiver female                             -.05    .21        .05
Caregiver white                              -.42    .29       2.14
Caregiver married                            -.48    .24       4.29 *
Caregiver education
High school or less                           .49    .20       5.93 *
Caregiver health                              .04    .13        .11
Caregiver health limits caregiving            .06    .21        .08
Caregiving impacts caregiver health          -.22    .24        .86
Caregiver experiences subjective burden       .00    .01        .06
Caregiver experiences objective burden        .06    .03       3.12
Stage of dementia                             .01    .08        .03
ADL deficits                                  .01    .03        .20
Physically aggressive behaviors              -.17    .10       2.68
Verbally aggressive behaviors                 .10    .06       2.76
Physically nonaggressive behaviors           -.04    .05        .65
Has Medicare insurance                       -.03    .34        .01
Has Medicaid insurance                        .25    .24       1.13
Has own transportation                       -.31    .18       3.09
Access to public transportation              -.13    .23        .35
More services would not make care easier     -.44    .16       7.63 **
More services would not enable continued
  care at home                               -.36    .15       5.76 *

Variable                                   Odds Ratio      95% CI

Caregiver age                                 1.00       0.98, 1.02
Caregiver caring for another family
  member                                      0.74       0.44, 1.22
Caregiver spouse of person with dementia      1.12       0.81, 1.56
Caregiver female                              0.96       0.63, 1.45
Caregiver white                               0.65       0.37, 1.15
Caregiver married                             0.61       0.39, 0.97
Caregiver education
High school or less                           1.63       1.10, 2.42
Caregiver health                              1.04       0.81, 1.34
Caregiver health limits caregiving            1.06       0.70, 1.61
Caregiving impacts caregiver health           0.80       0.51, 1.28
Caregiver experiences subjective burden       1.00       0.98, 1.03
Caregiver experiences objective burden        1.06       0.99, 1.13
Stage of dementia                             0.98       0.84, 1.16
ADL deficits                                  1.01       0.96, 1.07
Physically aggressive behaviors               0.85       0.70, 1.03
Verbally aggressive behaviors                 1.11       0.98, 1.25
Physically nonaggressive behaviors            0.96       0.87, 1.06
Has Medicare insurance                        0.97       0.50, 1.88
Has Medicaid insurance                        1.29       0.81, 2.06
Has own transportation                        0.73       0.51, 1.04
Access to public transportation               0.87       0.56, 1.36
More services would not make care easier      0.64       0.47, 0.88
More services would not enable continued
  care at home                                0.70       0.52, 0.94

Model [chi square] (23, N = 608) = 102.8, p =.0000

NOTE: ADL = activities of daily living. AA = Alzheimer's Association.

* p < .05. ** p < .01.

Table 5

Changes in Services Use Over Six Weeks by Caregivers of
People with Alzheimer's Disease

                        Baseline       6 Weeks         Contrast

Variable                M      SD     M      SD

Human services use
  Treatment            3.3    2.4    7.0    2.9    Baseline to 6 weeks
  Control              4.0    2.8    5.6    2.6
Health services use
  Treatment            2.8    1.7    2.7    1.8    Baseline to 6 weeks
  Control              3.1    1.7    2.8    1.7

                                     F

Variable                Group      Time        Interaction

Human services use
  Treatment              1.18    200.68 ***     30.73 ***
  Control
Health services use
  Treatment              0.32      2.50          0.10
  Control

*** p < .001.
Gale Copyright: Copyright 2004 Gale, Cengage Learning. All rights reserved.