Caring for the carers: quality of life in Huntington's disease.
Huntington's disease (HD) is a dementia that is genetically inherited as an autosomal-dominant trait with a complete lifetime penetrance. For individuals who develop HD, it is generally the immediate family that take on the responsibility of caring. However, there is a paucity of research into the impact of HD on the quality of life (QoL) of the spousal carer and the possible benefits of quantifying the HD carer's experience. Therefore, the purpose of this article is to describe the experiences of family carers of HD patients, specifically in relation to their QoL and to introduce the Huntington's Disease Quality of Life Battery for Carers (HDQoL-C). This is a valid and reliable QoL measure that has been developed to quantify the care-giving experience in HD in order to implement and assess therapeutic interventions.
Aubeeluck
Aimee
A
Centre for Psychological Research in Human Behaviour, School of Education, Health and Science, University of Derby, Mickleover, Derby.
D001294:Attitude to Health; D017028:Caregivers / Q000523:psychology*; D017281:Cost of Illness; D005190:Family / Q000523:psychology*; D005799:Genes, Dominant / Q000235:genetics; D006301:Health Services Needs and Demand; D006701:Home Nursing / Q000523:psychology; D006801:Humans; D006816:Huntington Disease / Q000235:genetics / Q000451:nursing*; D009730:Nursing Assessment / Q000379:methods / Q000592:standards; D019683:Penetrance; D011594:Psychometrics; D011788:Quality of Life; D015203:Reproducibility of Results; D012380:Role; D011795:Surveys and Questionnaires / Q000592:standards