Huntington’s Disease

Huntington’s affects approximately 8000 people in the UK. It is passed on through families, and usually symptoms start to show in those who have it when they are aged between 30 and 50 years old.

It is a life-shortening, progressive illness and because it is fairly rare, not many people understand it fully.

Huntington’s Disease is most often associated with Chorea – irregular, unpredictable movements – but this is just one of the symptoms of this neurological degenerative disorder.

In my role as an educator working with care settings across the Borough, including nursing and residential homes, supported living and Learning Disability teams, it is one of the topics I am educating staff about, so that if they have a resident or patient with Huntington’s they are better prepared to support them.

Across palliative care our aim is to help people experience the best quality of life possible.

Advance Planning

That includes doing things early on, such as writing an Advance Care Plan to state preferences and wishes at the end of life, before their condition deteriorates. At the end of life – generally thought of as the last 12 months of life – as with any other life-limiting illness, we are looking at controlling symptoms and making sure the patient is pain-free, comfortable, and being treated with dignity.

It’s also important to think about what we can do to support the family, who may have Huntington’s themselves or may not have found out.

Regrettably, it is a genetic disorder passed on by either mum or dad and, if a parent has it, there is a 50% chance it will be passed onto their child. Genetic testing is available to find out for sure.

Symptoms and diagnosis

For those who aren’t aware of a family history, there may be a delay in diagnosis because the initial symptoms, which include clumsiness and stumbling; difficulty concentrating; low mood and depression; mood swings and personality changes, could apply to other illnesses. Sadly the disease is progressive – symptoms get worse over time – and it can progress for up to 20 years. Over time, symptoms can include difficulty in communicating, issues with eating and drinking and impaired mobility.

Fortunately, the Huntington’s Disease Association have some excellent resources and for those with juvenile Huntington’s, the ‘Huntington’s Disease Youth Organisation’ is there for support and information.

As yet there is no cure, but research is ongoing to find treatments, and several clinical trials are currently in progress. There is also hope that the disease progression can be slowed down by ‘switching off’ the faulty gene.

One of the care homes we are working with, currently has a resident with Huntington’s Disease and the Clinical Lead Nurse will be speaking about her experience in caring for this person. The session will also feature the story of a lady who has Huntington’s Disease and her granddaughter Charlotte, who works in the care home where her Grandma lives. Once her shift has finished her Grandma hugs Charlotte for hours. She told me: “My Nan may have lost the ability to speak, walk and talk, but she will never lose the ability to love and she does that so well”.

Please email: hiych@wlh.org.uk to find out more about the team.