Living with Huntington's disease: need for supportive care

Abstract

Huntington's disease is a genetic, neurological disorder characterized by mid-life onset, involuntary movements, cognitive decline, behavioral disturbance, and inexorable progression. The impact of Huntington's disease is devastating for individuals and their families as it is a disease with a long trajectory; many young people are aware that they may develop the illness for years before there are obvious symptoms. There is therefore ample opportunity to plan and choreograph the care and supportive services for people with Huntington's disease and their families. The present study was conducted to explore the needs for palliative (supportive) care service provision of people with Huntington's disease and their families/informal carers. Six people with the disease, 19 informal carers and seven health care workers with specialized knowledge took part in individual, semistructured interviews, which were analyzed thematically. Themes were: (i). adjusting to the impact of the illness; (ii). surviving the search for essential information; (iii). gathering practical support from many sources; (iv). bolstering the spirit; (v). choreographing individual care and; (vi). fearing the future. Our findings demonstrate that palliative care services for people with Huntington's disease and their informal carers need to provide expert psychological and practical support and perhaps most importantly, be flexible, adequately planned and choreographed.