The progressive nature of Huntington’s disease creates many different challenges for those living with the condition, so it is vitally important that the team of clinicians involved in Huntington’s care, work together to ensure all progressive needs of the individual are met.
Two common complications as Huntington’s progresses are dysphagia (swallowing difficulties) and communication impairment. So, in this article we look how Speech and Language Therapists (SLTs) and Dieticians work collaboratively within Elysium Neurological services to provide complex care that is adapted to changing needs. We explore the benefits of this approach for the person living with Huntington’s disease and their families, and how an expert team approach will ensure that every individual who uses our services receives the appropriate level of care they require.
Huntington’s disease and dysphagia
Dysphagia, changes in the nerves and muscles in the throat and face area that cause problems with eating and drinking, is a frequently identified complication of Huntington’s disease (HD). Over time these swallowing issues can cause significant weight loss and chest infections from food bacteria or liquid repeatedly entering the airway when trying to swallow. Impaired mouth and throat control also may cause issues with communication and it becomes increasingly difficult for the individual to express themselves.
Without appropriate knowledge and experience of these complications, delivering person-centred care for people with HD can be challenging. Therefore, sharing best practice between clinicians and teams is paramount so that everyone is working towards the same care goals, putting an individual’s best interests at the centre of all care decisions.
In particular, the close working partnership of Speech and Language Therapists (SLTs) and Dieticians, is vital in providing high-quality complex care. SLTs have specialised knowledge in communication and dysphagia, whilst dieticians can practise dysphagia assessment and management as well as offer clinical support for diet and nutrition related conditions.
Candida Ellis is an SLT from Badby Park, a specialist neurological care home in Daventry which provides rehabilitation, long-term care, respite and palliative care for people with progressive neurological illnesses, acquired brain injuries and spinal injuries. As Candida explains, through the collaborative working approach of the SLT and dietician, they are well placed to support someone with complex progressive needs.
She says: “SLTs and dieticians always work very closely together when providing care for HD patients or residents, covering a variety of different elements of care including communication, monitoring swallowing, incorporating the body’s positioning into that, and of course diet and nutrition.
“We focus on the whole person and so we prioritise understanding and learning as much as possible about the person we are supporting from the moment we start working with them. We always try to promote independence, whilst managing risk, and so it is important that we work quickly to establish effective communication methods and techniques.
“We need to know what the person likes and dislikes, what decisions they want to make about their care so that we can help that person to have as positive quality of life as possible. That isn’t always easy as HD is a progressive condition and care needs are continuously changing but when you work together as a team it has a much better impact.”
Empowering choice in Huntington’s disease
Understanding the ‘whole person’ in HD care and ensuring that care is personalised to each individual’s preferences also plays a significant role in diet and eating choices.
Shailini Ponnou is a dietician at St Neots Neurological Centre in Cambridgeshire and as she explains early assessment and regular reviewing of nutritional care plans are very important to maintain wellbeing and quality of life. At the heart of this planning, explains Shailini, must be the individual’s wishes – what the person’s wishes must be included in all decisions.
She says: “Good nutritional care is fundamental to the provision of quality care for individuals with HD, and it needs to be tailored to each stage of the disease. Plus, we need to take into account what the particular person needs depending on their weight and behaviour, for example their activity throughout the day and any feeding difficulties individuals may experience.
I tend to take a very in-depth approach to establishing what a person likes. We spend a lot of time working with different communication aids so we can discuss food groups, we talk through the spectrum of flavours, types of cuisines, even what restaurants they used to go to.
I believe that this level of information is important so that no matter what challenges are presented in the future we can respect the individual’s original choice. Even if they lose their ability to communicate as effectively, we have a record of their preferences and we can implement their choices.
When you empower choice for someone with HD, it can really help deescalate behaviour as the condition progresses and can help reduce stress and agitation. If you know that someone has a favourite flavour of drink or a taste of food that they like, you can make sure that even when diets become supplement-based they can still enjoy those flavours and will get comfort from their food at some level.”
Communication and future care planning
Supporting the communication needs of individuals with HD is an important part of the care we provide at Elysium Neurological. Our expert team work closely with each individual to identify their preferred communication method so their individual wishes can always be incorporated in their present and future care planning.
As Candida Ellis, SLT at Badby Park explains, knowing the most effective communication methods for an individual is essential so that personalised care can be provided at each stage of the disease.
She says: “As HD is progressive it is vitally important that we make sufficient plans for future care needs. We don’t want to wait until ‘crisis point’ so to speak. The best complex care looks ahead to see what likely scenarios the individual may face and how can we be prepared for them.
We try to involve the family in the decision-making process as much as possible and allow adequate time for the resident and family to understand each decision and consider it fully.
And that’s where collaborative working from other team members plays an important role. Behaviour, mood and physical abilities can change rapidly so noticing or monitoring changes in a person can happen throughout the day not just when an SLT or a dietician is with them. When an entire team is involved in monitoring and providing personalised care, then we can be prepared and provide the right level of care when it is needed.
That’s why specialist HD training is so important – everyone involved in HD care should have specialist knowledge of what complications can occur and what happens when they do. In this way we can always ensure the best outcome for the individual.”
Working collaboratively in Huntington’s care
As an individual’s care needs change over time, sometimes quite rapidly, a multidisciplinary team approach is essential to provide consistent quality care for those with HD.
Matt Street, Therapy Lead at Badby Park expands upon the importance of collaborative working, not only between the SLT and a dietician, but all clinicians involved in the delivery of quality complex care.
He says: “There are many experts involved in the provision of complex care, and in particular with Huntington’s care. Clinicians cannot work in isolation – it must be a genuine collaborative approach with the individual’s needs and choices prioritised.
For example, once an individual is diagnosed with dysphagia the SLT recommends the texture of food or fluid which will be most appropriate and safest. SLT’s will work together with occupational therapists and physios looking at posture, positioning, supportive aids such as cups and cutlery. They review the whole mealtime environment to make sure it suits the individual’s needs.
“Dietitians will look at meals and ensure all nutritional needs and calorific intake requirements are met, incorporating food and drink preferences and ensuring individuals are able to make appropriate choices about their diet. They’ll work with chefs on meals and snack options and together with the SLTs to ensure they meet the appropriate levels of texture modifications.
Then the care team that provide round-the-clock support must be informed and trained about each person’s unique requirements so we can deliver personalised care.
All the while the whole team must be flexible and creative in their support for changing and progressive care needs. They must make sure quality of life is maintained and monitoring the social and emotional impact of their work. A collaborative, multidisciplinary team approach is the only way to ensure each person has the expert care they need at every step of their care pathway.”
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