Serving primary caregivers of persons with Alzheimer's disease : an integrated service delivery model

Abstract

IAlzheimer's disease (AD) is the most COllIIlon form of nontreatable dementia, a syndrome which reflects a progressive and global impairment of memory, intellect, and other cognitive abilities. This devastating condition directly touches the lives of as many as 10 million Americans, including not only persons suffering from the 2 disease but their primary caregivers and other family members as well. At present the course of AD cannot be halted or reversed, and no cure is known. 'Ihe problem, then, is how to most effectively respond to the psychosocial needs of primary caregivers in order to help them provide the best possible care for a loved one with AD.Research into the pathology of AD suggests that three types of brain tissue lesions are related to develoµnent of the disease. and (e) self-help organizations and materials. Conmen elements of these approaches reflect the need for caregiver education, training, counseling, and support services. However, current services are generally reactive in that they focus on crisis intervention rather than on primary prevention. 1he proposed Integrated Service Delivery Model responds to the need for an interdisciplinary approach to AD by offering a new conceptual framework for providing comprehensive services to primary caregivers. 1he medical care, psychoeducational, and social support service elements of the model reflect the assertion that AD is a biological, psychological and social phenomenon. They suggest a holistic approach to a complex problem, and take into consideration the many interdependent needs of primary caregivers and care receivers. 1he overall goals of the Integrated Service Delivery (ISD) Model are (a) integration of a variety of services for clients and (b) enhanced ability of clients to provide in-home care in an effort to delay or prevent institutionalization of persons with AD. 1he first goal is achieved through the coordination of interventions designed to meet the needs of AD caregivers and care receivers. 1he second goal is achieved as a result of coordination and integration, and results in the outcomes of reduced stress and burden and improved care management skills for primary caregivers.Implementation of the Integrated Service Delivery Model is recommended. However, several factors must be considered including (a) an appropriate setting for such a system; (b) the costs involved to provide daily care, the responsibility usually shifts to an adult child. In some families an adult sibling of the person with AD, a grandchild, or some. other family menber becomes the primary caregiver (Cantor, 1983;Ory et al., 1984).The burdens of caregiving are often overwhelming. Zarit et al. Powell & Reifler, 1983;Woods et al., 1985;Zarit et al., 1985; Zinmer & Mellor, 1982) have discussed the needs of AD primary caregivers. They can be sumnarized as follows:1. Information about the nature and prognosis of Alzheimer's disease.2. Permission to acknowledge and express intense emotions such as grief, anger, fear, guilt, helplessness, and loneliness. Zarit et ...