Family members’ needs for support when affected by Huntington’s disease

Huntington’s disease is an inherited neuropsychiatric disease. The complex nature of the disease, with increasing symptoms of changes in behaviour, cognition and motor function, affects the family members of people with the disease both emotionally, socially and financially.

The aim of the study is to describe the situation, and the problems, of family members of people with Huntington’s disease, and to identify the family members’ needs for support. Data collection involving around 100 family members in Sweden has taken place through three surveys: (1) questions concerning the family members’ problems and need for support, (2) Sense of Coherence (KASAM) and (3) Total Functional Capacity (TFC), which indicates the stage of the Huntington’s disease. The material will be analysed using a quantitative approach. The results will form the basis for continued improvement work and research on the care of families affected by Huntington’s disease.