National Alliance on Mental Illness
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Family Caregiving in Mental Illness

By Harriet P. Lefley, Ph.D.

May 1997

By Harriet P. Lefley, Ph.D.

Review by Dick Greer, David Seaman, and Marilyn Wedenoja, NAMI Literature Committee

NAMIís own Harriet Lefley has done it again! Sheís authored another balanced and compassionate book about families and mental illnesses--or brain disorders. It does not duplicate the few good books written for families on how to deal with a relative with mental illness, written mostly by top professionals who are also NAMI members, such as Hatfield, Lefley, Johnson, Burland, Walsh, Wasow, and Torrey. Neither does it duplicate the literature on families of persons with major mental illness directed to mental health professionals, again written largely by the same outstanding NAMI authors and intellectual leaders named above. Nor does it intrude on the literature for professionals drawn largely from the research on what Lefley calls psychosocial interventions with families. Names in this field include Hogarty, Falloon, McGill, Kuipers, and Leff.

Family burden is the centerpiece of this well-researched book. Despite many studies of family burden, Lefley, an AMI mother with a national reputation as a psychologist, writes that "the experiences of families of persons with long-term mental illness have rarely been mentioned in the caregiving literature." There has been simply too little notice and help from the treatment system for the emotional stress of caregivers dealing as they often must with disruptive, assaultive, self-destructive, and just plain incomprehensible behaviors. This is a gap this book is intended to fill.

Lefley offers family caregivers a good review of the research and theoretical perspectives that influence mental health professionals. Then she offers mental health professionals an opportunity to learn more about the struggles and experiences of families. To be creditable for this range of readers, she tries to balance the demands of readability and academic precision, the latter, one suspects, for the professional readers she is surely targeting.

Beginning with an overview of the history, theory, and research on family caregiving in mental illness, Lefley describes the trends in social and professional attitudes towards families. We all know now that mental health professionals have had a history of excluding and blaming the family and that these attitudes are changing too slowly in some quarters, faster in others. These changes can surely be traced to the scientific certitude that disabling mental illnesses are brain disorders as well as the growing awareness of what for many families is the debilitating stress that goes with caregiving.

Lefley unravels the mysteries of "burden"; e.g., violence in the household, the physical health of family caregivers, the impact of stigma, the mental health system as stressor. Perhaps the best part of the book is in Part III, where the author deals with the experience of mental illness from the perspective of the life cycle of the family and what Lefley calls the developmental stages of the illness. What are the effects of cyclical patterns of psychotic behavior on children, siblings, spouses, and aging parents? What does the family member think of his or her mental illness? What is there to help the family?

Cultural and ethnic differences, here and in other countries, come in for review in relation to cultural patterns in services use, residential caregiving, and appropriateness of services. Advocacyís place in all this--particularly NAMIís historic role and impact as well as that of consumers and their organized advocacy efforts--is dealt with sensitively. There is also a first-rate consideration of the family dilemma in a chapter titled "Patientsí Rights Versus Treatment Needs," in which all points of view are carefully weighted.

This is timely stuff. Itís clear that most of our mentally ill family members are destined to live in communities, with or without adequate services and support. What is less clear is the services issue: who provides and who pays. The issue of family involvement is a front-burner issue. Will service systems come to appreciate the familyís burden and help ease it?

We recommend that NAMI folks give this book to professionals who need the background on how families got blamed, the elements of the family burden and the phases of the family cycle, how professionals can help, what the research shows today, and much more. Itís also a good reference book, containing among other useful discussions, a comprehensive review, for example, of all the issues in patientsí rights and treatment needs from the point of view of all those involved.

Harriet Lefley, bless her, has again given us a useful book that provides the background for getting the questions right as well as what the right responses should be.

Family Caregiving in Mental Illness by Harriet P. Lefley, Ph.D., SAGE Publications, Inc., Thousand Oaks, CA, 1996. 259 pages.