Therapists play a vital role in meeting the biopsychosocial needs of community-residing people with dementia and their family caregivers. For example, hospital therapists frequently work with caregivers when a crisis occurs and when care needs exceed caregivers' capacities. Therapists 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, or 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.
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 reponsibilities--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, Becket, & 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.
Predictors 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).
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 10 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 therapists 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 therapists 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 therapists 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. Therapists 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 therapists 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. Therapists 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, therapists 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 therapists 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 therapists 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.
- McCallion, Philip; Toseland, Ronald W.; Gerber, Todd; Banks, Steven; Increasing the Use of Formal Services by Caregivers of People with Dementia; Social Work; Jul2004; Vol. 49 Issue 3
Reflection Exercise #3
The preceding section contained information
about increasing caregivers’ use of external support. Write three case study examples
regarding how you might use the content of this section in your practice.
In McCallion’s study, what four factors most influenced a caregiver’s desire to be referred to an AA chapter?
Record the letter of the correct answer the