Huntington's Disease: Time to Care

Abstract

<p>Huntington's disease (HD) is a devastating, degenerative brain disorder for which there is, at present, no effective treatment or cure HD slowly diminishes the affected individual's ability to walk, think, talk and reason (Huntigton's Disease Society of America, 2007)</p> <p>Huntington's disease profoundly affects the lives of entire families-emotionally, socially and economically. Despite this impact, the predominant research focus is on finding a cure and the medical treatment of the disease. There has been very little research on the meaning of the illness experience for individuals with HD and families.</p> <p>This study explored six people's experiences, two people with HD, and four family-care providers, with the intent of representing their experience as intimately as possible. The following themes emerged from the analysis of the participants' narratives: the challenge to social identity; efforts to sustain social identity; and the mismatch between the needs of people with HD and the available formal care.</p> <p>Family members emphasized certain characteristics of good care: empathic, flexible, accessible and responsive to individual and family needs. Families in this study identified the moral dilemma they were faced with knowing that the care their relative with HD received was inadequate, yet there was limited community support such as home care to augment the significant emotional and physical demands associated with caring for the person with HD at home.</p> <p>Family members valued empathic care providers who recognized the person with HD was not culpable for his or her behaviour. Thus the provision of care requires better training, and institutional arrangements that allow for the time and flexibility that the person with HD requires.</p> <p>It is also apparent from this study that family members and individuals with HD can make a significant contribution to understanding the social and emotional implications of the illness.</p>