Huntington's disease

Huntington’s disease is a complex illness that requires specialist knowledge to ensure people receive the right care. Exemplar’s nurse-led specialist teams effectively manage the symptoms of Huntington’s disease to improve the lives of those living with the condition.

People living with Huntington's disease are supported to live a fulfilling life, with regular social activities and hobbies. Activity staff consider a person’s concentration span and tendency to fatigue when planning meaningful activities which make a real difference to life. We focus on restoring people’s choices wherever possible, ensuring those living with HD feel valued and happy.

"Huntington’s disease is a complex illness that requires specialist knowledge to ensure people receive the right care. The HDA is working closely with Exemplar to improve skills and care to ensure those with the illness have the best quality of life possible.”

Cath Stanley, Chief Executive of the Huntington’s Disease Association

From changes in mood, including lack of drive, to difficulties with speech, swallowing and involuntary movements, our experienced nursing staff work to reduce the impact of a person’s symptoms. Communication difficulties are overcome with support from community speech and language therapists, with assistive technologies and equipment for managing communication, safety and comfort - including communication aids - identified and put in place. Special care is given to food, with high calorie diets used effectively to prevent weight loss and modifi ed diets developed to reduce the risks associated with swallowing.

Management of complex behaviours

Our specialist staff work to understand why someone is demonstrating behaviours that challenge, and reduce their impact by addressing the triggers. Our staff:

  • reduce feelings of frustration by responding quickly to requests
  • leave extra time for comprehension and completion of tasks
  • encourage independence by offering assistance, without taking over
  • avoid confrontation by distracting attention and using de-escalation techniques
  • encourage choices and alternatives, and allow considered risk taking

Innovating for better care

Some Exemplar homes bring together NHS specialist consultant neurologists, psychologists, GPs and Huntington’s Disease Association experts at quarterly in-home clinics. Hosting clinics at Exemplar homes avoids changes in routine and the frustration of long hospital waits. Service users benefit from expert consultant care in a familiar environment.

Supporting families

We understand that Huntington’s disease has a major impact on families. We offer a supportive place for loved ones to talk over their concerns.