Experience of late stage Huntington's disease: clinical implications

Huntington's Disease (HD) is an inherited neurodegenerative disorder that causes a progressive decrease in motor, cognitive, and psychiatric functioning. HD typically presents between the third and fifth decade of life, with an average duration of ten to twenty years. As individuals begin to display symptoms, they become less independent and more reliant on others for daily needs. Due to the progressive nature and extended duration of HD, clinicians play a key role in assisting patients and their families through changes and preparing them for challenges that may be faced in the later stages of the disease. Knowledge of the common challenges, opinions regarding care, and sources of hope throughout the difficult later stages of the disease can help guide healthcare professionals, including genetic counselors, to address the specific issues for affected individuals and their families and provide more comprehensive and supportive care.