Life-Course and Severe Mental Illness: Implications for Caregiving within the Family of Later Life

Abstract

Life-Course and Severe Mental Illness: Implications for Caregiving Within the Family of Later Life* Judith A. Cook**, Bertram J. Cohler, Susan A. Pickett, and Jeff A. Beeler This analysis applies a life-course perspective to the study of family caregiving for persons with severe and persistent mental illness in later life. This involves understanding how family caregiving is impacted by changing socio-historical trends as well as recent discoveries about the course and treatment of serious mental illness. Application of new research on aging and psychiatr-ic disability as well as results from studies of caregiver burden and satisfaction in older families.s can enrich the study of both familial coping and life-course social science. Key Words: family caregiving, life-course social science, mental illness. A staggering number of social and scientific changes have impacted persons with severe mental illness and their families over the past five decades. These changes include the widespread availability of drug treatment with neuroleptics, deinstitutionalization and the closing of state mental hospitals, greater access to societal resources such as public education and legal protections of civil rights, and the rise of selfhelp movements for both families and their affected members. As a result, families and their ill relatives now have opportunities to interact with one another as never before and to transition through the life-course together in the community. Because of this, life-course social science presents a rich theoretical framework with which to view these social changes and their effects on families and family caregiving. At the same time, such study can enrich life-course scholarship by challenging traditionallyheld notions about the existence and power of age norms, the orderly sequencing of life transitions, and the interaction of lifecourse and illness course in family caregiving. This analysis applies a life-course perspective to research on societal trends, discoveries about the course of mental illness, new findings about aging and psychiatric disability, and studies of family burden and satisfaction, in order to better understand the implications of caregiving for a relative with major mental illness in later life. Social and Historical Forces Impacting People with Mental Illness and their Families In the last half of the 20th century, significant improvements in psychotropic medication for schizophrenia, depression, and bipolar mood disorders, along with shifts in financial reimbursement policies for care, enabled many persons to reside outside of hospitals and pursue life goals such as a career or higher education (Brown, 1985). Deinstitutionalization led to the movement, beginning in the 1950's and 1960's, of large cohorts of inpatients from state facilities to a community-based system of mental health care that was underfunded, undermonitored, and largely ineffective (Goldman, Regier, Taube, Redick, & Bass, 1980; Gronfein, 1985a, 1985b). A continuing emphasis on community care has involved periodic modification of this system despite its patchwork quality and vulnerability to political and economic manipulation (Lamb et al.,1993; Mechanic, 1989). Due to a paucity of housing options and lack of residential services designed to establish and maintain independent community living (Blanch, Carling, & Ridgway 1988), many former inpatients returned home to live with families or in board and care facilities. Service system inadequacies forced many families to assume the role of de facto therapist (Thompson & Doll 1982, p. 379) charged with case management-like responsibilities that were demanding and unrelenting (Cook,\. Recently, introduction of managed care into the public mental health arena has created additional uncertainty and instability for clients and families by erecting barriers that prevent access to appropriate levels of care (Malloy, 1995). …