Abstract
Background: Long-term care of people with Huntington’s disease (HD) rests mainly with family or partner carers, and HD care presents burdens not seen in other disorders. Identifying factors that affect HD carer QoL may provide insights into easing carer burden. Aim: To describe the quality of life (QoL) of carers of people with HD. Methods: Thirty one HD carers completed the 34-item Huntington’s Disease Quality of Life Battery for Carers (HDQOL-C) questionnaire. Results: Fifty five per cent of the participants indicated a mid-level QoL. The number of hours spent caring inversely correlated with QoL. The number of times a carer socialised per month was positively related to QoL. Participants reported that access to affordable care programmes for the HD-affected person, more time for themselves, and social support would improve their QoL. Conclusions: Providing respite may improve HD carer QoL. Research on interventions to improve HD carer QoL is warranted.
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