Huntington's disease: Therapy strategies.

Abstract

Case reports are offered to illustrate a modified psychoeducational approach to single-family therapy and multiple-family therapy with families with Huntington's disease. Single-family therapy was especially helpful in solving problems related to specific family developmental crises and to shifts in family roles and hierarchies resulting from the progressive worsening of Huntington's symptoms. The mobilization of hope and altruism and a lessening of the sense of isolation and helplessness in coping with the illness were better facilitated by the multiple-family group. The participation of families at different stages of the illness in a process of emotional exploration, however, tended to threaten defenses, such as partial denial, which were useful in coping with the progressive course of the illness. The recent discovery of a genetic marker for the disease dramatically increases the need to attend to these issues in Huntington's disease families.Huntington's disease (Huntington's chorea) is a neuropsychiatric disorder genetically transmitted in a fully penetrant autosomal dominant manner to 50 percent of the offspring of afflicted patients (5). Manifestations of the disease result from loss of neurons in certain brain areas, especially the basal ganglia and cortex (8); often, the loss of neuronal cells appears as atrophy of these areas on computerized axial tomographic scans of the patient's brain (4). The clinical presentation includes steadily worsening abnormal involuntary movements (which may involve the limbs and trunk in violent spasms), a progressive dementia, and a variety of psychiatric symptoms. Of 30 patients studied by Caine and Shoulson (2), 28 had psychiatric conditions

Ambiguous Loss and Disenfranchised Grief: The Impact of DNA Predictive Testing on the Family as a System

“…These families, for generations had experienced the kind of ambiguous loss described by Boss in which affected relatives, in the terminal phases of HD, were physically present but psychologically absent. Their family history and its cumulative affects on family dynamics that often resulted in conflict, alcoholism, physical abuse, and suicide (Murburg et al, 1988) poorly prepared them to cope with the information revealed by the test.…”

“…Understandably, families with a long history of loss because of inherited diseases that were misdiagnosed or unexplained, as was the case for HD, are predisposed to particular difficulty (Byng‐Hall, 1991; Murburg, Price, & Jalali, 1988; Rolland, 1999). Whatever their prior explanations for the death of relatives, their fates are now intertwined.…”

Multiple family therapy: an overview

“…In this way the multiple family paradigm has inspired more traditional therapeutic activities in general mental health services, such as relative support and carer groups, and it is now a well-established ingredient in the work with people with schizophrenia (Kuipers et al, 1992). Multiple family therapy is now also practised in many other presentations and conditions (O'Shea and Phelps, 1985), including drug and alcohol abuse (Kaufman and Kaufman, 1979), chronic medical illness (Gonsalez et al, 1989;Steinglass, 1998), Huntingdon's disease (Murburg et al, 1988), child abuse (Asen et al, 1989), eating-disorder patients (Dare and Eisler, 2000;Scholz and Asen, 2001;Slagerman and Yager, 1989), and more specifically bulimia nervosa (Wooley and Lewis, 1987), and a mixture of in-and outpatient children and adolescents presenting with a variety of problems (Wattie, 1994). It is likely that its cost-effectiveness in times of dwindling resources does explain in part the increasing popularity of the multiple family therapy approach.…”

Living with Huntington's disease: Illness perceptions, coping mechanisms, and patients' well‐being

“…The distress patients experience when being diagnosed with HD is believed to be partly related to their previous experiences of others with the disease, including the effects that HD has had on their lives of their own parents or other close relatives (Tyler, 1991). If they have children, the guilt they experience for possibly having transmitted the gene to them, further contributes to their distress (Hayden et al, 1980;Murburg, Price, & Jalali, 1988). If they have children, the guilt they experience for possibly having transmitted the gene to them, further contributes to their distress (Hayden et al, 1980;Murburg, Price, & Jalali, 1988).…”