Adult daycare for persons with dementia: a viable community option.

Adult daycare is a viable option in the long-term-care continuum of care for persons with Alzheimer's disease and other dementias. Programs have flourished in the last few years as families trying to maintain their family member with dementia at home have looked to the community for help. They have looked for help in providing quality care for their family member and for some respite from their own difficult and stressful caregiving responsibilities. The experience of the state of New Jersey illustrates the components necessary for successfully developing and implementing adult daycare.

New Jerseys efforts to develop a continuum of care for Alzheimers disease date back to 1983 with the establishment of the New Jersey Alzheimer's Disease Study Commission. The commission estimated that approximately 180,000 New Jersey residents have a form of dementia. In its Final Report in 1986, the commission recommended that the state provide support for the development of a diagnostic center, an information and referral center, expansion of adult daycare programs, and training and educational materials for family caregivers and professionals.

As a result of the daycare recommendation, legislation was introduced, and an appropriation of $1.1 million was made to the Department of Health in July 1987 to develop a statewide program to provide adult daycare services for victims of Alzheimers disease.

Working closely with the Alzheimer's Association and the New Jersey Adult Day Care Association, a Request for Applications form was developed and mailed to all medical and social adult daycare centers statewide, totaling approximately one hundred at the time. Twenty-eight agencies are currently receiving letters of agreement for service.

To be eligible for the Dementia Day Care Program, an older adult must meet the following criteria:

1. Have a diagnosis, documented by a licensed physician, of Alzheimers disease or one of the related dementias.

2. Be routinely supervised by an informal caregiver.

3. Reside in the community, but not in a rooming house or boarding home.

4. Have documented evidence of eligibility according to income guidelines.

5. Be a resident of the state of New Jersey.

Aker a clients eligibility for service has been established, agency personnel complete further assessments and develop a treatment plan that identifies both immediate and long-range goals for both the dementia victim and his or her caregiver. Implementation varies from agency to agency, since some maintain totally separate programs for clients with dementia, some are partially integrated, and others are totally integrated. Within a safe, supervised environment, staff incorporate physical, social, cognitive, and functional activities to maximize remaining strengths and minimize deficits. Exercise, music, and forms of reminiscence, reality orientation, and remotivation are included in the daily routines of most of the programs. All provide a noon meal and snacks, and the majority furnish transportation. Services to caregivers include counseling, referral, educational programs, and support groups.

Clients are provided two to five days of service per week, depending on the need and availability of funds. From November 1987, when service began, through June 1992, a total of 999 clients have received 111,849 days of service. The average per diem cost to the state was $33.59 in fiscal year 1992. Currently, 198 persons throughout the state are receiving subsidized service. Given our present budget, we are unable to enroll additional clients until another client is discharged. Therefore, a waiting list for service exists.

Because most programs are relatively small with a high client/staff ratio, they are able to provide highly individualized care to clients and their family members. In ad&tion to providing actual daycare, one of the most significant components of adult daycare service is case management. In a community service setting that is involved with the client/caregiver dyad nearly daily, the professional staff (registered nurse, social worker or program director) assume the role of case manager for all services or needs of the client with dementia and his or her caregiver.

Daycare staff are well acquainted with client/caregiver needs as well as resources available in their communities. Thus, they are able to efficiently and effectively match needs and services. These include in-home chore or homemaker-home health aides to assist the client with personal care in the morning, transportation services, legal or financial assistance, and referrals for healthcare problems.

Daycare staff also provide families with information essential to caregiving tasks in the home and problem solving. Their knowledge of the client and his or her particular behaviors makes it possible for daycare staff to do this on a highly personalized level.

In addition, staff members provide emotional support through either telephone or direct contact as often as needed. Frequently, for overburdened caregivers, this means daily. In many instances, agency staff share their home telephone numbers with caregivers of dementia victims, so staff are accessible in the evenings and on weekends. Their sense of commitment to providing quality care and service extends beyond that which would generally be expected.

More formal support is provided through support groups, which most adult daycare programs sponsor. These support groups have an education/support or self-help/support format. They often have the additional benefit of facilitating communication and supportive relationships between caregivers.

One daycare program took the initiative of developing a countywide support group for Alzheimers caregivers in collaboration with other county agencies. In addition to sponsoring the support group, they opened the doors of their daycare facility on Saturday afternoons to provide respite care during the hours of the support group meetings so that caregivers might more readily attend. This service was provided free of charge.

Most professionals involved in providing daycare service to victims of Alzheimers disease and related disorders believe that adult daycare is beneficial to clients as well as caregivers. This has not been empirically validated through research studies, however. The Gerontology Program, in collaboration with Penn State and Kent State Universities, has recently received a five-year grant from the National Institute on Aging to determine whether caregiver stress is reduced by the provision of adult daycare services. The results of our study should offer directions for further improvement of this vainable set of services.

Marilyn Engstrom, R.N., M.S.N, C.S., is coordinator, Rickey Greene, M.S. W/., is program manager, and Mary Casey O'Connor, M.S.W., A.C.S.W., is public health consultant, social work, all in the Gerantology Program, New Jersey State Department of Health, Trenton.

REFERENCE

New Jersey Alzheimers Disease Study Commission, 1986. find Report. Trenton: New Jersey State Department of Health