Huntington’s disease

Exemplar’s nurse-led specialist teams effectively manage the symptoms of Huntington’s disease to improve the lives of those living with the condition.

At Exemplar, people living with Huntington’s disease are supported to live a fulfilling life with regular social activities and hobbies. Our care home teams 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.

From changes in mood, lack of drive and behaviours that challenge to difficulties with speech, swallowing and involuntary movements, our experienced nursing teams 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, which are identified and put in place. Special care is given to food, with high calorie diets used effectively to prevent weight loss and modified diets developed to reduce the risks associated with swallowing.

“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

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Inherent: a Huntington’s disease story

The Huntington’s Disease Association worked with an award-winning photographer, Stephen King, to produce the ground-breaking photography project – Inherent: a Huntington’s disease story.

The project explores the lives of families living with Huntington’s disease – a devastating hereditary disorder of the central nervous system, which can be passed down the family line, from generation to generation, through a faulty gene in the DNA. Anyone whose parent has Huntington’s disease has a fifty percent chance of inheriting the condition.

This work is produced through a collaborative process and explores the hopes and resilience these families embrace in the pursuit of an everyday life. It aims to promote an increased awareness, knowledge and understanding of this little known, but devastating disease.

The project and exhibition was made possible thanks to the support of Exemplar Health Care.

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We understand that Huntington’s disease has a major impact on families. Our open-door policy means friends and family are welcome to visit and be part of daily life. We also offer a supportive place for loved ones to talk over their concerns.

Some Exemplar homes bring together NHS specialist consultant neurologists, psychologists, GPs and Huntington’s Disease Association experts at quarterly in-home HD 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. Extended pathways of care are available at several Exemplar homes. These individual houses and flats allow individuals to live independently while still accessing care and support when needed.

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
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