In the later stages of Huntington’s disease, many people can no longer be cared for safely at home. That’s where our care homes come in.
Our Huntington’s disease care supports adults living with complex care and health needs following a diagnosis, including those over 18 with juvenile Huntington’s disease.
We support people to live well, manage the changes that come with the disease, and continue doing the things they love for as long possible.
Our care goes beyond traditional residential care. As well as supporting people’s mental and physical health needs including cognitive impairment, psychiatric disorders and progressive motor dysfunction, we recognise people’s individual spiritual, emotional and sexual needs.
As the disease progresses, our Nurse-led teams are trained to support people’s additional care needs, such as if they need a PEG feeding tube or tracheostomy.
We're proud that Dearnevale, Greenside Court and Kavanagh Place have achieved the 'Quality Assured' accreditation from the Huntington's Disease Association.
Our approach to Huntington’s disease care
We work with individuals, their loved ones and professionals to ensure a safe, smooth transition from admission to discharge.
This involves a detailed clinical needs assessment, a community fit assessment, and input from Exemplar Health Care clinical experts.
Thanks to our high staffing levels that are based on individual need, we can adapt our approach and care to meet every person’s needs.
Together with loved ones and fellow professionals, we design individual care plans that reflect a person’s holistic needs.
We also work in partnership with local authority partners, NHS services and other support partners including the Huntington’s Disease Association and The Neurological Alliance.
Huntington’s disease friendly environments
We design our environments to help people with Huntington’s disease stay independent and reduce their distress and frustration.
Our homes offer supportive, familiar environments that make it easy to get around, support meaningful engagement in daily activities, and ensure safety, security and comfort.
We consider:
lighting
décor
furnishings
signage
noise and distraction
outdoor space.
Care from a multidisciplinary team
Our Huntington’s disease care homes have a dedicated clinical, therapy and support team which includes trained Health Care Assistants and Registered Nurses.
People also have the support of Exemplar Health Care clinical experts, who work together to share learnings and best practice, and facilitate continued care pathways.
They include:
Behaviour Support Practitioners
Huntington’s Disease Lead Nurse
Neurological and Rehabilitation Services Consultant
Speech and Language Therapist
Lead Therapist
Consultant Psychiatrist (in times of crisis).
Therapy led interventions
We offer community-based and in-house therapy-led interventions such as:
community involvement
daily living skills development
educational programmes
falls prevention
fatigue management
financial management training
mobility support
pain management
sensory strategies
social skills development
strength building.
Technology and communication aids
Huntington’s disease can make it difficult for people to speak clearly and coherently.
As well as support from our Speech and Language Therapist, we find individual solutions to help people live more independently and reduce frustration, including:
augmentative and alternative communication (AAC) devices
introduction cards
mood charts
virtual reality headsets
visual schedules
voice alerts and voice recognising technology.
Positive behaviour support
Many of the people we support with Huntington’s disease are considered to display behaviours that are ‘too complex’ for mainstream care providers.
At Exemplar Health Care, we help them manage, reduce, and even eliminate these behaviours.
Our Exemplar Health Care clinical experts, including our Behaviour Support Team and a Consultant Psychiatrist, are available in times of crisis, and all colleagues complete Exemplar Positive Behaviour Support (EPBS) training (certificated by Bild ACT).
By understanding the causes and implementing management strategies, we aim to reduce the frequency and intensity of behaviours of concern within 12 weeks of admission.
Nutrition and diet
Common complications of Huntington’s disease include problems with eating and swallowing (dysphagia) and risks of choking, particularly as the disease progresses.
Due to involuntary movements and metabolic changes, managing weight can also be challenging.
We understand that food is more than just fuel for our bodies – it’s a meaningful social event. We promote choice and involvement at meal times, as much as possible.
Our Cooks are trained in producing a range of modified diets, including pureed and liquidised food.
As the disease progresses, we facilitate advanced care planning discussions about alternative feeding methods, such as PEG feeding tubes.
End of life care
Whilst it may upsetting to think about, having important conversations and planning ahead means people can make decisions about their care in the final stages of their lives.
Educating our care home teams helps staff recognise early signs of decline, allowing us to better meet their needs in the final stages of life.
We support people to make choices about their future care including their:
physical needs including pain management
emotional needs including distress management
relationships with others
environmental needs
cultural, spiritual and religious beliefs and practices.
Explore over 50 care homes across England, supporting adults living with complex needs.
Join over 100 ICBs and local authorities in choosing Exemplar Health Care for complex care placements.
Discover rewarding careers in care with stable roles and plenty of opportunities to grow.
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