Families as Caregivers A Historical Perspective

Locus of care for the mentally ill Colonial Period (17 th Century) Families on their own—no medication, doctors, support services Family devastated Predominant belief about etiology of mental illness: mentally ill people are being punished for their wickedness; they must deserve their fate Patients’ suffering aggravated by this societal belief

Locus of care for the mentally ill Latter part of 18 th Century Progressive forces lead to establishment of first general hospital in America (Pennsylvania Hospital) where mentally ill were treated Virginia built first asylum exclusively for the mentally ill

Locus of care for the mentally ill First quarter of 19 th Century Special institutions for “insane” established in 8 states Majority of mentally ill could not get into these institutions, wound up in poorhouses In mid-century, Dorothea Dix proposed public facilities for all states—to provide humane and enlightened care Facilities located in rural areas, far from patients’ families

Locus of care for the mentally ill By 1955 “deinstitutionalization” began, due to: Discovery of first anti-psychotic drug (Thorazine) Increasing attention to protecting the civil rights of patients Growing feeling that the environment in large institutions made the problems of the mentally ill worse (institutionalization)

Assumptions underlying deinstitutionalization Community care is better for mentally ill patients Communities could and were willing to assume responsibility for providing care

Results of deinstitutionalization Population of state hospitals was reduced from 558,002 (in 1955) to 193,436 (in 1976). Communities were not ready for the influx of so many severely and chronically mentally ill patients. Lack of planning Lack of clarity as to what level of government would be responsible

Results of deinstitutionalization Many mental health professionals resisted working with chronic patients Patients were not prepared for community living Services inadequate to cope with patient needs, lack of access to services Service fragmentation, lack of coordination Communities resisted Families experienced severe stress

Discharged patients 65% of patients returned home: 35-40% with parents 35-40% with spouses 20-25% went to live in boarding homes or SRO’s (single-room occupancy dwellings)

Result of deinstitutionalization for families Families replaced ward staff of state hospitals Families often destroyed by the stresses of caring for gravely disabled family members

Theories of etiology Schizophrenogenic mother Fromm-Reichmann (1948) theory: schizophrenia is due to unconscious rejection of mother for her child Double Bind Hypothesis Bateson (1956): Conflicting communication within the family creates schizophrenia, which is seen as a learned communication pattern

Theories of etiology Marital Schism and Skew Lidz (1965): Schizophrenia due to living in families in which there is severe emotional conflict Hierarchical Incongruity Haley (1980), Madanes (1981): Schizophrenia/bizarre behavior is attempt of young person to hold family together

Theories of etiology Transactional Thought Disorder Wynne (1978): Schizophrenia caused by communication problems in family Biological and Genetic Explanations Torrey (1983): Mental illnesses are brain diseases—structural or functional in nature Such explanations of mental illness relieve the family of guilt

Theories of etiology Stress Theories Brown, Birley, and Wing (1972), Vaughn and Leff (1981): Level of expressed emotion in family can influence course of mental illness Stress theorists usually assume that stress interacts with a biological predisposition to cause mental illness (stress-diathesis theory) Stress theories underlie most psychoeducational approaches to helping families

Consequences of mental illness to the family Families feel underprivileged and marginal, have need to conceal the mental illness (Clausen & Yarrow, 1955) Families find bizarre behavior most burdensome—hurting others, damaging property, drinking

Consequences of mental illness to the family Families feel: uncertain about how to deal with patient’s inactivity, confused about unpredictable behavior, worries about patient’s future, anxiety, guilt, depression, disappointment, frustration, anger (Creer and Wing, 1974) Burdens of caring for mentally ill are universal— regardless of social class, education, age, or sex of caregiver (Doll, 1976)

Consequences of mental illness to the family Families live under constant tension, always on guard, nervous; they worry about neglecting other children; parents’ marriage suffers (Hatfield, 1978)

Responsiveness of mental health practitioners to family situation Depends on practitioners’ beliefs about etiology Family therapy approaches that believe mental illness is caused by family dysfunction can worsen guilt and not give the practical help that is needed.

When families were asked what they needed, they responded: Hatfield, 1979 study Help in understanding patient’s symptoms Suggestions on how to cope with patient’s behavior Opportunities to meet with other families of mentally ill Respite care Different living arrangement for patient

More effective approaches to working with families: Supportive family counseling (Bernheim, 1982): Recognize that it’s stressful to live with mental illness Reduce sense of helplessness and build self- esteem Provide information Develop management skills Recognize that others in the family have needs too