Huntington's Disease (HD) is a progressive disorder of the brain that causes movement abnormalities, cognitive deterioration and affective disturbances. Symptoms typically begin around the age of 40 and patients become severely demented, motorially dilapidated, unable to care for themselves and eventually bedridden. There is no cure for Huntington's Disease and death occurs on average 15-17 years after onset. Moreover, HD is a genetic condition with each child of an affected person having a 50% chance of inheriting the gene.
Research has established that family caregivers experience considerable emotional distress in dealing with the depression, anxiety, reduced motivation and rapid mood swings of the HD sufferer (e.g. Johannes et al, 1993; Michie et al, 1997). As there is no known cure, increased knowledge on how to maximise carer quality of life is especially important. However, there is no disease specific measure to quantify quality of life experienced by family caregivers living with these unique and distressing symptoms. The aim of my research is to develop and validate a disease specific HD Quality of Life measure which can be applied to therapeutic intervention programmes in order to assess their efficacy on the quality of life of HD family caregivers.