Huntington disease : death, psychiatry and health services

Huntington Disease (HD) is a genetic, degenerative neurological illness that affects mood, cognition and motor movement. Complications from the disease result in death 10 to 15 years post-diagnosis. However, individuals may be aware that they have HD years before the development of the most severe effects. Drawing on in-depth, qualitative interviews with 20 individuals with HD and 10 informal caregivers, this thesis explores the salient experiences that occur outside of predictive genetic testing. Findings emerged in four areas; namely, attitudes towards death and suicide, experiences with psychiatry, interactions with health services and bureaucracies, and the needs and experiences of caregivers. Participant accounts also form the basis for a number of health services recommendations, including trajectory-specific support groups and the need for disability benefits that are sensitive to the realities of HD. The thesis also explores the numerous ambiguities that HD creates for conceptual categories, specifically in relation to diagnosis, death and illness experience.Arts, Faculty ofSociology, Department ofGraduat