Use of Health and Human Services by Community-Residing People with Dementia

This article reports on the use of and need for health and human services by community-residing people with dementia. Telephone interviews were conducted with a sample of 608 caregivers of such individuals who were randomly selected from a dementia registry. Caregivers reported using an average of 3.2 health services and 3.7 human services to assist them in the care of the person with dementia. Despite the high level of services use, 73 percent of the caregivers indicated a high need for at least one additional service, and 72 percent indicated that additional services would reduce the likelihood of institutionalization of the recipient. Although services use was more frequent than expected, many caregivers lacked knowledge about services, a fact that suggested that social workers have a vital information and referral role to play. Key words: Alzheimer's disease; caregiving; community care; dementia; frail elderly people It has been projected that there will be 2.3 to 5.8 million older people with Alzheimer's disease and other dementias residing in community settings in the United States by 2000 (Brookmeyer, Gray, & Kawas, 1998; Evans et al., 1990; Khachaturian & Radebaugh, 1996). The number of people with Alzheimer's disease alone is expected to quadruple by 2050, at which time it will affect one in 45 Americans (Brookmeyer et al.). When family members are available, they provide most of the support and supervision needed by cognitively impaired older adults (Gwyther, 1996). But many community-dwelling cognitively impaired older adults need support and assistance from health and social services agencies because they do not have family caregivers. Also, as dementia progresses, professional health and human services often are needed to supplement and support the care provided by family members. Many social workers already play a vital role in meeting the biopsychosocial needs of community-residing people with dementia. Because social workers work in an array of public, private, and voluntary health and human services agencies, they serve in intake, assessment, and intervention capacities. For example, hospital and nursing home social workers frequently work with caregivers when a crisis occurs and when increasing care needs exceed caregivers' capacity. Similarly, social workers in family services agencies and employee assistance programs often are called on to work with caregivers of people with dementia. Although some social workers have played an important part in the development of services and service options for people with dementia and their families, there is increasing concern that not enough social workers are involved in these efforts. Indeed, many social workers report a need for more knowledge and skills in aging services (Klein, 1996; Peterson & Wendt, 1990). With support from the John A. Hartford Foundation, several organizations recently undertook initiatives for faculty, field education, and curriculum development to respond to these needs and to encourage social work leadership (O'Neill, 1999). Consistent with these initiatives, the present study was undertaken to develop a more complete picture of services use by people with dementia and their family caregivers and to explore areas for additional social work intervention. Although there is a growing body of literature on the use of formal health and human services by community-residing, cognitively impaired older adults and their family caregivers, a review of the literature for this study failed to yield a comprehensive picture of services use. Most of the studies that have been conducted have asked caregivers about their use of particular services, such as home care or respite care (Adler, Kuskowski, & Mortimer, 1995; Cotrell, 1996; Cox, 1997; Gill, Hinrichsen, & DiGiuseppe, 1998; Ginther, Webber, Fox, & Miller, 1993; Gonyea & Silverstein, 1991; Kosloski & Montgomery, 1992; Penning, 1995). …