Huntington's disease

Huntington’s disease is a very complex genetic condition which requires specialist care.

Exemplar Health Care is equipped with nurse-led specialist teams, who understand Huntington’s disease and are skilled in methods to effectively manage the symptoms. This specialist knowledge allows Exemplar to improve the lives of people living with the condition, and ensure they remain as independent as can be for as long as possible.

As an individual’s experience with Huntington’s disease progresses, Exemplar provides varying methods of care and support. Exemplar’s new OneCare pathway provides various levels of support within a service user’s own home. For instance, an individual may simply require support to take medication while their condition is still self-manageable, and as the condition progresses, so can their level of care until they feel it is necessary to move into the care home itself.

How else do we approach independence and stimulation?

  • Regular social activities and hobbies. Meaningful activities, hobbies, volunteering and educational opportunities are built around an individual and their unique needs. Huntington’s disease and other neuro-disabilities can have a significant impact on a person’s energy levels so our Service User Engagement Teams consider an individual’s concentration span and tendency to fatigue.
  • Restoring individual choices where possible, ensuring everyone feels 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

Our specialist care team have expertise in the many complex behavioural and physical difficulties associated with Huntington’s disease. Staff work to reduce the impact of people’s symptoms, including

  • changes in moods
  • reduction in someone’s willingness to be involved in daily life
  • difficulty in speaking and swallowing

Difficulties in communication are overcome with support from speech and language therapists; assistive technologies and equipment for management of communication are identified and put into place. Special care is also given to nutrition; calorie management is effectively used to prevent excessive weight loss, and diets can be modified to reduce risks associated with swallowing.

More complex behaviours associated with Huntington’s disease are reviewed, and the triggers associated with them are addressed. Our specialist teams:

  • Reduce an individual’s feelings of frustration, by responding quickly to requests
  • Create additional time for comprehension and completion of tasks
  • Encourage independence by offering assistance; but do not take over
  • Avoid confrontation through de-escalation techniques
  • Encourage a variety of choice, allowing considered risk taking 

Many of our care homes bring together specialist consultant neurologists, psychologists and Huntington’s Disease Association experts at in-home clinics. Hosting these clinics prevents distress in changes to routine, and the frustration of long hospital waiting times. Service users and families benefit from expert consultant care in a familiar, friendly environment.