Emotional distress and perception of risk for violent behaviors by adults caring for family members with Huntington Disease in their homes

Over 30,000 people with Huntington disease experience loss of motor, cognitive, and behavioral functions, with symptoms most often appearing in middle adult years. Behavioral manifestations of HD include depression, irritability, and aggressive behaviors. Most remain at home until care becomes impossible for family to provide. Many are spouses and parents with minor age children. This presentation describes emotional distress and perceived risk for physical, verbal, emotional, or violent behaviors by family caregivers of persons with HD cared for at home. Adult family members of persons with HD living in their homes were recruited through HD centers and clinics and surveyed. Concerns for behavioral symptoms were the person with HD: is difficult to deal with, is verbally hurtful, is emotionally hurtful, considers suicide, and is physically hurtful. Respondents rated highest frequency for two indicators of emotional distress, and three indicators of risk for violence. Forty-two percent of the respondents reported being sad one or more times a week and twenty-nine percent report feeling overwhelmed one or more times a week. Six-percent are frequently concerned the person will hurt children in the home, three-percent are frequently concerned that the HD person will hurt them, but less than one percent of the respondents consider hurting or killing themselves. Family members providing in home care to relatives with HD report mental health problems as well as risks for violence and mental abuse as a result of neuropsychiatric symptoms in persons with HD. Coping strategies used and their perceived helpfulness are presented.