Huntington's Disease care

Inspire's specialist nurses, Life Skills Facilitators, and therapists are skilled in providing care, medical support, and rehabilitation for individuals living with the impact of Huntington's disease.

Huntington's disease (HD) is a genetic, progressive disorder of the central nervous system. It leads to changes in the brain, which affect people's movement, mood, and understanding.

How does Huntington's disease affect people?

While symptoms may vary depending on each individual and the progression of the condition, people affected by Huntington's disease may experience:

• Difficulty concentrating
• Memory lapses
• Depression and mood changes
• Physical disabilities including problems with mobility, balance and movements
• Challenges with swallowing, speaking, and breathing
• Behavioural changes
• Communication difficulties
• Difficulty in recognising familiar faces or environments

As the disease progresses, symptoms may increase in severity, and often necessitates full-time care services and assistance with daily activities.

The impact on families

As a genetic disorder, Huntington's disease can have a devastating impact on individuals and the wider family. This impact is extensive, affecting the emotional, physical, and financial aspects of life, leaving families struggling with both the medical and emotional challenges.

Many people living with Huntington's disease may have seen the illness affect their close family members from the early stages, and as a result, people can become depressed and anxious as early symptoms become worse.

For those with Huntington's disease in the family, genetic testing can be carried out to confirm a diagnosis.

While there is no cure for Huntington's disease and no treatments to stop or reverse the condition, our specialist team supports people affected by the disease to manage their symptoms and live with independence.

Expert Huntington's disease care at Inspire Neurocare

Every member of our staff, from nurses to therapists, undergoes continuous training specific to HD. We stay updated with the latest research and techniques to ensure the best possible care for the people we support.

Our specialist team tailors a comprehensive care plan for each individual with Huntington's disease, to respond to their symptoms and provide the right expert support.

Regular health checks and adjustments to the care plan ensure that it continues to meet the evolving needs of the individual. The ultimate goal of our Huntington's disease care is to enhance the quality of life of those living with Huntington's disease, promoting independence and dignity at every stage.

Specialist nursing care

With a comprehensive understanding of the specialist services required to provide Huntington's disease care, our nurses provide care in areas like supported nutrition, encompassing PEG nutrition, feeding tube nutrition, and a high calorie diet where required. Inspire's nurses support people with medications management, posture management, addressing spasticity and mobility impairments, safeguarding skin integrity, and offering guidance on continence and personal care.

Through their dedicated and holistic approach, Inspire's specialist nurses ensure that every individual with HD receives the highest level of care, promoting well-being and the quality of day-to-day life

Read more about how our specialist teams support individuals with complex needs.

Psychology

Navigating the cognitive and emotional aspects of Huntington's disease care requires specialist knowledge and understanding. Inspire Neurocare's psychologists are experts in supporting these complexities, offering emotional support alongside evidence-based coping strategies tailored to individual needs. They address a range of areas, from wellbeing and cognitive function to behaviours of concern.

By providing thorough consultations and targeted interventions, our neuropsychologists play a pivotal role in ensuring that individuals with HD have the tools and resources they need to face the psychological challenges of the condition with resilience and optimism.

Physiotherapy

Inspire's physiotherapists are dedicated to aiding individuals with Huntington's disease, tackling the physical challenges that come with this condition. Through tailored exercise programmes, they work to enhance mobility, balance, and muscle strength.

Recognising the common physical challenges associated with HD, our physiotherapists offer techniques to mitigate involuntary movements and improve gait stability.

The interventions of our physiotherapy team aim not only to alleviate physical discomfort but also to boost overall functionality. The proactive approach allows people with HD to navigate daily life with greater confidence and reduced limitations.

Speech and Language Therapy

Inspire's speech and language therapists offer specialised support for people with Huntington's disease, addressing the unique communication challenges they face. Working to improve clarity of speech, voice strength, and strategies for understanding spoken language, speech therapy can help people to maintain effective communication skills.

Recognising the difficulties with swallowing that often arise in HD, the speech and language therapist provides techniques to minimise choking risks and promote safer eating experiences.

The approach of Inspire's speech and language therapists goes beyond just communication; they strive to keep individuals with HD confidently engaged with their surroundings and able to communicate their needs. Beyond these, therapists also provide family and friends with strategies to communicate more effectively with those affected, ensuring they remain connected and understood.

Occupational therapy

Inspire's occupational therapist provides support for people with Huntington's disease to make everyday tasks easier or more achievable, from dressing and eating to strategies to enhance memory and problem-solving. Problems with movement can be addressed with exercises to refine coordination and fine motor skills, and address safety concerns, from fall prevention to choking hazards.

The occupational therapy approach also helps those with HD remain socially active and enjoy a good quality of life, adapting hobbies and interests with alternative ways to continue to do the things they love.

A better quality of life and independence at Inspire Neurocare

For people living with progressive conditions, including Huntington's disease, staying independent and medically stable for as long as possible is a crucial part of living happy, fulfilled lives.

At Inspire Neurocare, we pride ourselves on providing a comfortable and welcoming environment. Our state-of-the-art care homes are designed with our residents' needs in mind, from spacious rooms and physiotherapy gyms to landscaped gardens.

Finding the right care home or nursing home for people with Huntington's can be a challenge, especially for young people. At Inspire, we recognise that younger people with Huntington's disease have unique needs that can vary from person to person.

At Inspire's care services, residents live alongside those who face similar challenges, in a community of mutual understanding that benefits the people we support. While many care homes and nursing homes support older people with Huntington's disease, Inspire offers specialised support for those aged 18 - 65.

We provide a stimulating and enriching environment with a variety of social activities and opportunities to maintain hobbies and interests. Family members are welcome to visit at any time and enjoy time together.

Huntington's disease respite care

At Inspire, we understand the challenges carers face when caring for those with Huntington's disease. Respite care for people with Huntington's disease provides temporary rest and relief for primary caregivers—typically a family member—looking after people with Huntington's.

At Inspire Neurocare, we deliver high-quality and bespoke respite care for each person we support.

Our compassionate and skilled team ensures that individuals with HD receive comprehensive and tailored care during their stay, allowing families and carers a vital break to rest, in the knowledge that their loved one is in expert hands.

Next steps

To discuss Huntington's disease care, advance care planning, respite care, and end-of-life care or to make an enquiry about our specialist neurocare, please contact the team via the form below. You can expect a response within one working day. 

We support every individual and family member, ensuring that families are supported to understand funding and financial matters, and we work alongside professionals including social services, funding bodies, social workers, and other care providers.

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Inspire Neurocare supports individuals with a range of neurological health conditions, progressive disorders, and brain and spinal injuries. Every Inspire Neurocare service has full wheelchair access. 

Support from charities

The Huntington's Disease Association is a national charity in the UK dedicated to offering assistance, support, and guidance to those living with and affected by Huntington's disease.

The association offers a wealth of knowledge and experience to assist patients, their families, and carers in navigating the challenges presented by the disease.

From support groups and research updates to fundraising initiatives, the association plays a key role in driving awareness and progress in the fight against Huntington's disease.