Optimizing the quality of life of individuals with Huntington Disease

Huntington Disease is a genetically inherited neurological disorder that most often strikes adults in mid-life (between 30 and 55 years of age). Each child of a parent with Huntington Disease is at 50% risk of inheriting the disease themselves. While genetic testing has been available to determine the presence of the mutant gene since 1993, those at risk struggle with the decision whether or not to be tested as there is no cure or treatment capable of stopping the progression of the disease. The purpose of this paper is to examine how some individuals who have Huntington Disease are able to live lives of high quality while others, similarly affected by the disease, spiral downward emotionally, cognitively and physically with some even taking their own lives. The researcher sought to identify themes, characteristics, supports, services and resources, as well as examine the common variables amongst those who were thriving despite living with ever-advancing Huntington Disease. The exploratory research was conducted through the use of focused interviews with Huntington Society of Canada professional staff from across Canada who work with individuals with Huntington Disease and their families. Findings from this research suggest social determinants of health, clients’ degree of self-awareness, family history with the disease, stigma associated with the disease and the availability of supports and services in their area all contribute to clients’ well-being. Research participants suggested clients’ social connectedness and their own attitudes towards the disease, their personalities and their receptiveness to support and assistance are likely the greatest factors impacting clients’ quality of life.