Background: Manifested by decline of cognitive, affective, and motor function, Huntington Disease (HD) is an autosomal dominant disorder with an average age of onset of 38 years. The course of illness extends 10–15 years after clinical diagnosis. The nature and extent of caregiving support for family members of persons with HD is unknown. Purpose: To identify the consequences of seeking caregiving help by family members of persons with Huntington Disease (HD) Methods: Seventy people, ages 14–81, who have a family member with a positive HD gene test or a clinical diagnosis of HD participated in focus groups in three US cities. These data are part of a larger project to identify health problems and strategies of persons who provide care to persons with HD. Data were audiotaped, transcribed, and analyzed by the research study team and common themes identified. Findings: Caregivers sought help from family, friends, health care providers, and established caregiving community-based services. Responses from all sources were mixed. When help was received, it was in the form of providing information, finding services, or listening to the caregiver. When help was denied, the denial was in the form of avoidance by family, ineligibility for financial assistance, or refusal of services from community-based agencies. Individual health care providers did not understand HD, or were unwilling to provide care, leading to inappropriate management or dismissal of caregiver concerns. In other instances, needed services were not available. Consequences for the caregivers were described as feeling hopeless, overwhelmed, and not knowing where else to turn. Conclusions: Responses to requests for help were highly variable. Understanding the etiology of this variable response is necessary for devising appropriate interventions. Supported by NINR R0107970 to J.K.Williams
Session #1219 - Poster Session I
The 29th Annual MNRS Research Conference (April 1-4, 2005)