Increasing the Use of Formal Services by Caregivers of People with Dementia

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. …