Huntington’s disease care

Many of our care homes can provide specialist care and support for those with Huntington’s disease.

Huntington’s disease

Huntington’s disease is a hereditary disorder that can damage the nerve cells in certain areas of the brain and affects around 8,000 people in the UK.

It’s caused by a defective gene that can get passed down through generations. If one parent carries this defective gene, there is a 50 per cent chance a child will inherit it. But because symptoms often only appear when someone is in their 30s or 40s, it means the condition is unapparent in a person’s early years.

Those with Huntington’s disease may develop memory loss, confusion, aggression, difficulties with speaking or swallowing, weight loss, seizures and depression.

One of the characteristic traits of the disease is called ‘chorea’, a term used to describe involuntary movements which happen because muscles go into spasm of their own accord.

It can take 15 to 20 years for the disease to progress, which means there is often a need for long-term care. Although there is no cure, there is still much that can be done through good quality care and drug intervention.

For further information and advice contact The Huntington’s Disease Association on 0151 298 3298 or visit their website: www.hda.org.uk.

Specialist staff

Because of the variety and complex nature of symptoms, caring for Huntington’s disease patients requires specialist knowledge and skills.

Our carers undergo specific training to help deal with and understand the unique problems and challenges they may face. For example, one minute, a carer may be confronted with someone who is confused and anxious, the next it may be someone who has become physically and verbally aggressive.

It is essential that our carers have a combination of clinical knowledge, compassion, patience and understanding. We employ only those with these unique qualities in our Bupa care homes.

To ensure our standards are maintained, we work closely with the Huntington’s Disease Association, who make frequent visits to our homes. Staff are expected to achieve our high standards by completing the Association’s recommended courses.

Person-centred care

A crucial part of looking after those with Huntington’s disease is what’s known as ‘psychosocial care’ which describes the treatment of Huntington’s residents in the same way as any other in our homes, who enjoy normal social activities, contact with loved ones and a healthy interaction with those around them.

We ensure that social activities – such as a trip to the cinema, shops or zoo are arranged in the same way.

Because each person's needs and likes are so different, every resident has a Personal Care Plan which recognises their individual preferences and wishes. This plan helps us tailor the care and support we give to suit each individual resident.

It’s not just the residents that need attention when it comes to Huntington’s disease, however. A diagnosis can be devastating not just for the victim but their families too. Some children may choose to have a blood test to see if they carry the defective gene, whilst others will decline in the knowledge that there is no cure. Either way, it makes for an emotional roller-coaster and our staff are compassionate, sympathetic and understanding to all those affected.

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Huntington’s disease care