Finding out you or a loved one has Huntington’s Disease (HD) can come as a huge shock. As an incurable, degenerative condition it can be mentally and physically challenging both for those who have been diagnosed and their loved ones. Living with the illness can mean constantly re adapting as the symptoms progress over time, and you may require additional support both medically and emotionally in order to deal with these changes. However, we know that remaining in familiar surroundings, amongst loved ones and home comforts, is an excellent way to positively cope with the challenges of HD and remain as comfortable and independent as possible.

WHATS IS HUNTINGTON’S DISEASE

Huntington’s disease is a degenerative disease that damages certain nerve cells in the brain and affects the wider central nervous system. In 97% of cases the condition is caused by a hereditary faulty gene. However, in approximately 3 % of cases there is no family history of the disease. This is commonly because the parents died at a young age. Men and women are equally affected by the illness. Despite symptoms usually beginning to surface during adulthood, 5 – 10% of people with HD develop it before the age of 20 – this is termed Juvenile Huntington’s disease. Recent research has uncovered that around 12 per 100,000 people are affected by the condition.

Personality changes such as mood swings, irritability and altered behaviour are commonly present in the early stages of the condition and can be the most distressing symptoms.  Huntington’s disease progressively worsens over a 10 – 15-year period; as the brain damage worsens it can affect movement, behaviour and cognitive functions including, perception, awareness, thinking and judgment. Difficulties with uncontrollable movement will become more prominent as the condition progresses. However, whilst many will suffer extreme muscle spasms, in the advanced stages of the illness a person’s movement may become slow, and their muscles rigid.

Damage to the nerve cells in the brain will progress over time, meaning symptoms can become increasingly severe making the illness progressively more debilitating. Eventually, a sufferer may find moving, communicating and swallowing extremely difficult, and become fully dependent on others. However, providing a person with the right support to make them content and compensating for the loss of bodily functions with medical equipment, whilst also providing psychological help, can ensure they maintain the best quality of life possible.

Huntington’s disease is a hereditary disorder of the central nervous system which usually develops in adulthood. This condition can affect movement, cognition and behaviour. Huntington’s disease is caused by a faulty inherited gene though in some cases there is no known family history link.

Some of the characteristics of HD can include psychiatric problems and difficulties with behaviour, feeding, communication and abnormal behaviour. People can develop these features at any age but most are known to develop problems between the ages of 35 to 55.

If you show signs of Huntington’s disease or it is known to run in your family, genetic testing can be performed to confirm the diagnosis of Huntington’s disease

Our Huntington’s Disease Care and Support

We understand that caring for a loved one with Huntington’s disease, dealing with the progressive nature of the symptoms, and trying to come to terms with the sufferer’s psychological struggles, can be a very upsetting time and put a strain on relationships. That is why our team members are fully trained to minimise the disruption being diagnosed with HD can cause, by providing the support patients, families and friends may need to help them cope. Together, we devise a support plan that revolves around your specific needs, enabling you to remain in the comfort of your own home, and continue to participate in activities you enjoy with dignity and independence.

Trained specifically to provide expert support to Huntington’s disease sufferers, our support assistants offer a wide range of assistance such as, help around the house, medication administration and personal care. From preparing nutritious, easy to eat meals to more sensitive issues – such as toileting, bathing and continence care home care preferred are there to carry out all the practical care aspects with empathy and discretion. We can help you monitor your medication, and signpost you to the best occupational therapists to help with common issues such as muscular discomfort and difficulty swallowing, to ensure you are comfortable and managing your symptoms. This gives family and friends the opportunity to spend more quality time with their loved one, creating special memories and boosting the patient’s morale.

Our support assistants understand that as the condition progresses some extremely difficult decisions may have to be made. They are there to offer emotional support and companionship, to both the patient and their loved ones. They are there to discuss your choices as symptoms begin to worsen over time, guiding you through potential options such as feeding tubes, with kindness and knowledge – always keeping your loved one’s specific needs and desires at the heart of everything we do. Commonly, those suffering with Huntington’s disease experience bouts of anxiety and depression, which is not only upsetting for them but their friends and families too. We understand that a chat about shared likes, dislikes and hobbies can really boost morale and improve quality of life for the patient, and provide everyone with some normality at a very disruptive and upsetting time. That is why we ensure you or your loved one is matched with a support assistant with a complementary personality, as well as the relevant skill set to make the entire family feel as at ease as possible.

Our Huntington’s disease care and support

It can be difficult to choose the suitable support for you or a loved one diagnosed with Huntington’s disease. It is natural to have many questions and reservations when deciding whether to let a support assistant into your home. Our friendly, highly experienced, team members are always on hand to explain all aspects of the HD care and support we offer, and provide quality, impartial advice and information.

• Support with personal care that is tailored to each individual
• Visiting care that can adapt as the Huntington’s disease progresses and your needs change, supporting complex medication regimes.
• Short regular visits through to longer visits, night care, respite or a full-time live-in carer.
• Specialist support assistants who are trained to help them understand the complexities of Huntington’s disease.
• Dedicated care team with over 25 years’ experience in the care sector
• Full assessment before care starts.
• Bespoke and flexible support plan
• Specialist support and expertise – 24 hours a day, 7 days a week
• Support with social activities that are important to each individual client, and lifestyle enhancement.

Contact us today for more information about Huntington’s care support services from our expert team.

Find out more about Huntington’s disease at the Huntington’s Disease Association