Huntington's disease: seldom seen--seldom heard?

Abstract

Objective: To ascertain the needs of people with Huntington's Disease (HD). HD is a complex disease which does not fit neatly into either physical or psychiatric service provision.

Design & methodology: Structured questionnaire interview of both affected individuals and carers. Participants were recruited through the Fife branch of the Scottish Huntington's Association and interviewed by an independent researcher. Fifteen affected individuals and sixteen carers were interviewed. Levels of stress were measured using validated questionnaires, HAD (Zigmond & Snaith, 1983) and PSS (Cohen et al, 1983).

Results: A range of perceived difficulties for both people with Huntington's Disease and carers were highlighted as were gaps in service provision. Services were at best ad hoc and mostly "reactive" in nature.

Conclusions: HD is a disorder of families and it is not unusual for more than one family member to be affected. There is therefore an increasing burden of care falling upon a small number of individuals who may themselves be at risk of developing the disease. Gaps in service provision need to be addressed proactively to facilitate a quality of life for individuals and carers. In the experience of the Scottish Huntington's Association, the results of this survey reflect the situation throughout Scotland.