Families as Caregivers

1. Families as Caregivers A Historical Perspective

2. Locus of care for the mentally ill • Colonial Period (17th 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

3. Locus of care for the mentally ill • Latter part of 18th 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

4. Locus of care for the mentally ill • First quarter of 19th 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

5. 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)

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

7. 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

8. 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

9. 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)

10. 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

11. 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

12. 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

13. 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

14. 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

15. 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

16. 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)

17. 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)

18. 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.

19. 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

20. 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