Caring for Family Members Affected by Huntington''s Disease

This study focuses on the issues faced by spousal carers of Huntington''s Disease (HD) sufferers, and explores the carer role in HD and defines the resources that are used by (or would be useful to) carers. The study uses unstructured, qualitative interviews of carers caring for their spouses in their own home. Topics explored during the interviews included: carers'' perspective on their care-giving role and how that role had changed their lives, carers'' motivations for caring and their doubts and problems, carers'' plans for caring for future generations of HD relatives and facilitating factors and barriers to providing effective care. Spousal carers provide a very valuable, cost-effective service that mainly draws upon their own resources.