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Abstract #162112

Janet K. Williams, PhD, RN, FAAN¹, J. Jackson Barnette, PhD², Toni Tripp-Reimer, RN, PhD, FAAN¹, Jane S. Paulsen, PhD³, Elizabeth Penziner, MA, MPH³, and Meghan L. McGonigal-Kenney¹. (1) College of Nursing, University of Iowa, 338 Nursing Building, 50 Newton Road, Iowa City, IA 52242, (2) Department of Biostatistics, School of Public Health, University of Alabama at Birmingham, 140J Ryals Public Health Building, 1665 University Blvd., Birmingham, AL 35294-0022, 205-934-7781, barnette@uab.edu, (3) Roy J. and Lucille A. Carver College of Medicine, University of Iowa, 305 Medical Education Building, Iowa City, IA 52242

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.

Learning Objectives:

• Learn the relative frequency of emotional distress and potential for violence in homes where care is being provided to a person with Huntington disease
• Describe risk for emotional distress and family violence for caregivers of family members with Huntington disease living in the home
• Learn some of the coping strategies used and their perceived helpfulness to cope with these risks

Keywords: Domestic Violence, Caregivers

Presenting author's disclosure statement:

Any relevant financial relationships? No
Any institutionally-contracted trials related to this submission?

I agree to comply with the American Public Health Association Conflict of Interest and Commercial Support Guidelines, and to disclose to the participants any off-label or experimental uses of a commercial product or service discussed in my presentation.