Huntington’s-specific support
The Huntington’s Disease Association provides information for carers, Specialist Advisers, support groups and a telephone helpline.
HDA helpline:
0151 331 5444
For carers
Support for the person who supports everyone else
Caring for someone with Huntington’s disease can be physically exhausting, emotionally overwhelming and incredibly isolating. This page brings together honest experiences, practical information and trusted support for the people quietly holding everything together.
Explore carer supportYou are welcome here, whether you call yourself a carer or not.
Carer support
What do you need today?
Caring can bring different challenges on different days. Choose the area that feels most useful to you right now.
Someone who understands
Honest experiences from carers who understand the realities that can be difficult to explain.
You are not alone ›Practical advice
Everyday ideas for managing appointments, routines, equipment and the changing demands of caring.
Explore practical help ›Eating and swallowing
Lived experience and trusted guidance around meals, swallowing changes and difficult decisions.
Find information ›Money and benefits
Find trusted places to check what financial support, benefits and carer assistance may be available.
Find financial guidance ›Planning for changes
Information to help you think ahead while continuing to take one day at a time.
Look ahead gently ›Help in a crisis
Clear routes towards urgent professional help when you or the person you care for cannot safely wait.
Find urgent support ›
You do not have to read everything. Start with the
one thing that might make today a little easier.
Honest carer conversations
Life as a Huntington’s Disease Carer
Short, honest films about the thoughts, emotions and everyday moments that carers do not always say out loud.
Film 1
Yeah, I’m Alright
The familiar answer carers often give, even when there is far more happening beneath the surface.
Watch on YouTube ›
Film 2
Coping and Being OK
Why managing to keep going does not necessarily mean that somebody is genuinely doing okay.
Watch on YouTube ›
Film 3
The Person I Want to Talk To
When the person you most want to share your feelings with is also the person you are trying to protect.
Watch on YouTube ›
These films are shared to raise awareness, not to ask for
sympathy. If they reflect something you recognise,
you are not the only one.
Things carers don’t always say
Real carer scenarios
Some everyday. Some deeply personal. All too often unspoken.
These short cards reflect the hidden realities of caring for someone with Huntington’s disease, from cancelled plans and sleepless nights to isolation, difficult decisions and becoming an expert through lived experience.
Fifteen honest carer experiences
Created to raise awareness, not to ask for sympathy
A reminder that other carers understand
Steve and Sarah More than thirty years alongside Huntington’s disease
From one carer to another
I built this from lived experience
I don’t have every answer. I’m a husband caring for my wife, Sarah, through the later stages of Huntington’s disease.
Over the years, I’ve learned that caring is not only about medication, appointments and practical tasks. It can affect your sleep, friendships, finances, confidence and even how your own home feels.
This page isn’t here to tell carers how they should cope. It’s here to speak honestly about the things we often keep to ourselves and to help another carer realise they are not the only one.
I built this from lived experience, not because
I have every answer, but because carers deserve
somewhere that speaks honestly.
Visit Carer Voices
Where to find help
Practical help and trusted support
You don’t have to work everything out by yourself. These trusted organisations can help with Huntington’s disease, your caring role, finances and urgent concerns.
Ask for a carer’s assessment
A carer’s assessment looks at how caring affects your life and what support may make your role more manageable.
Depending on your circumstances and where you live, support could include practical help, advice, equipment or opportunities for a break.
Benefits and financial guidance
Caring can affect your income, employment and household costs. A benefits check can help identify support you may be entitled to.
Claiming one benefit can sometimes affect another, so obtain individual advice before making financial decisions.
When you need urgent help
If you or the person you care for needs urgent medical help but it is not an immediate emergency, contact NHS 111.
If someone is in immediate danger or a life is at risk, call 999.
What Is HD shares lived experience and general information.
It is not a replacement for individual medical, legal or
financial advice. If you are unsure what support is right
for you, speak to the appropriate professional or
Huntington’s Disease Association adviser.
One step at a time
Caring through changing needs
Huntington’s disease can bring difficult changes and decisions. You don’t have to prepare for everything at once, start with what feels most important today.
When eating and swallowing change
Changes to eating, drinking or swallowing can be frightening for both the person with Huntington’s disease and those caring for them.
A Speech and Language Therapist—SALT, dietitian, GP or specialist Huntington’s team can assess what is happening and offer individual advice.
Ask for professional advice if coughing,
choking or difficulty swallowing increases.
Keep the clinical team informed about weight
loss, dehydration or changes at mealtimes.
Discuss food texture, drink thickness and
positioning with the appropriate professional.
Don’t change prescribed food textures or drink
thickness without professional advice. What is
suitable for one person may not be suitable for
another.
Planning ahead—one step at a time
Planning ahead does not mean giving up. It can help protect the person’s choices and reduce uncertainty for everybody if their needs change.
Wherever possible, important conversations and legal arrangements should begin while the person can still understand and make the relevant decisions.
Record important wishes and preferences.
Consider Lasting Power of Attorney for health,
welfare, property and financial matters.
Keep medication, contact and emergency
information easy to find.
Ask about care assessments, equipment and home
adaptations before a crisis occurs.
Legal arrangements and care systems differ across
the UK. Use the official guidance for where you live
and seek professional advice when needed.
A simple but important precaution
What if something happens to the carer?
If you became ill or had an accident while away from home, would anyone know that somebody depends on you?
A carer’s emergency card is kept in your purse or wallet. It identifies you as a carer and provides information that can help someone contact your chosen emergency person or activate an emergency plan.
Carers Card UK is an independent paid service. Local emergency-card schemes and what they provide vary by area, so check with your council or local carers’ organisation first.