Find advice and support if you're caring for someone with Huntington's
If you are helping someone with Huntington’s to manage daily life, you may gradually be taking on the role of ‘carer’. Many people who look after a member of their family or a partner don’t see themselves as a carer because first and foremost they are a son, daughter, partner or parent to the person with Huntington’s. As the disease progresses, however, the person with Huntington’s will need increasing amounts of support and the caring role increases.
In addition, because of the genetic nature of the disease, some Huntington’s carers may have cared for others in their family, or may be at risk of the disease themselves.
How you feel about your caring role will vary greatly depending on your individual circumstances, but all carers are likely to find that there are times when they struggle practically and emotionally.
Support for carers
Living with Huntington’s disease can be very difficult, for you as a carer, as well as for those who have it. The right support can make a big difference and we’re here to help. Many carers have found it can help them to feel less isolated, and to get advice and support, by connecting with others in a similar situation, either in person or online.
Our advisers can help you navigate your role as a carer.
Our message board is a peer support forum for people to ask for advice and talk to one another on a wide range of topics.
Branch and support groups
These are a great way to talk to people in a similar situation.
Online carers groups
We host a monthly online group for carers. Please email us to find out more.
You can contact Carers UK via its advice line: 0808 808 7777.
Other forms of support
Your doctor is there to support you with your health problems (including mental health challenges such as managing stress), as well as those of the person you care for. You should tell your GP that you are a carer - this can be recorded on your medical records. Many GP practices hold a ‘carers register’ to give practical help, e.g. by offering more convenient appointment times or home visits if it is difficult to get to the surgery, or arranging for prescriptions to go direct to your local pharmacy, to make it easier to pick them up.
Your GP should be the gateway to other appropriate health and support services. She /he can refer you to services such as counselling, local services providing support to carers and/or social services. Try to visit your GP with problems before they get out of hand. She/he should also be able to arrange for you to have a free flu jab. This is important, not only to maintain your own health, but to ensure that the person you are caring for is not put at risk of infection.
A list of local counselling and psychotherapy services can be found on the British Association for Counselling and Psychotherapy (BACP) website. You can also ask your GP to refer you for counselling on the NHS.
- Carers centres
Carers centres are available across the country and the support offered varies depending on where you live (support could include days out, advice on benefits and form filling, complementary therapies, support groups, courses about caring, training on back care etc). Find your local carers agency by visiting www.carersuk.org
- NHS social care and support guide
There is a guide to social care and support on the NHS website, which provides guidance to people who may need social care, their families and carers. It offers clear information about social care to help people understand their options and where to go if they need help.
- Key reading resources
There are a number of helpful reading resources available. One noteable publication is The Selfish Pig's Guide to Caring by Hugh Marriott; a first-hand account of what it means to be a carer for a loved one. Hugh's book provides the advice he wished he'd been given when he first became a carer for his wife.
Stories from the community
For carers week 2021, we interviewed members of the community who were at different stages of caring and in different caring circumstances each offering their own piece of advice. Many people take solace in the fact that they are not alone and other people are navigating their own Huntington's journey. We also have really useful blog on care homes which was written by Trustee, Cathy Lyon who is a retired care home manager.
As a carer, it is important to do whatever you can to look after yourself. Many carers wait until they are at breaking point to seek help, but it is much better for the person you care for, as well as for you, to seek support before you reach that point.
You may need a range of emotional support to keep you going.
This could include:
- Friends and family
- Online communities, message boards and forums for carers, as well as for those living with Huntington’s
- Local Huntington’s Disease Association branches, groups and events for those affected by Huntington’s
- Expert support, for example our Specialist Huntington’s Disease Advisers, who are there to support you and the person you care for both emotionally and practically
- Telephone support, such as Carers UK’s adviceline
- Talking therapies such as counselling
- Taking a break from caring - either regularly (e.g. using a day centre two or three times a week) or for a longer break, perhaps once or twice a year.
'I have Huntington's disease' ID cards
Did you know that we provide 'I have Huntington's disease' ID cards that we can personalise with your loved one's name and emergency contact details? The card can be kept in their purse or wallet or put in a card holder on a lanyard (not provided). Please email email@example.com with the following information:
- Their full name
- Emergency contact name
- Emergency contact mobile number
- Emergency contact landline number
- Your address (to post the card to)
ID cards for England and Wales only.
Additional information for carers
Managing communication difficulties
When we talk about the symptoms of Huntington’s, we are talking about physical and movement changes, cognitive changes (difficulties with planning and thinking) and behavioural changes. All of these have an impact on the way someone with Huntington’s communicates.
People with Huntington’s can’t control the muscles used for speech as well as they could before. You might notice that their speech is a little slurred, or they are struggling with volume control.
Changes in the brain usually mean that people struggle to put their thoughts into words. Often they find it hard to start a conversation. They may become focused on one topic and not be able to move on from it (this is particularly common if there is a change to the normal daily routine e.g. if there is a clinic appointment and they are worried about getting there). They may repeat certain words that seem important to them.
They may become more apathetic; they simply don’t have the same ‘get up and go’ anymore, and this can affect their communication skills. If someone feels anxious or depressed, whether due to Huntington’s or another reason, it’s also likely to have an impact on their communication. They may find it hard to be in a group of people which may mean they avoid social situations, start to withdraw and feel socially isolated. This can create a cycle of decreasing communication.
How can we help the person affected?
When we break down the issues affecting communication like this, it can help us think about how we can support people to communicate.
Key tips around communication are:
- Talk about one thing at a time
Keep it simple and don’t overload the person you’re caring for with information. Sticking to a single topic helps people with Huntington’s to process information and respond. Use short sentences and even pictures or visual cues, such as showing them an item you’re offering them.
- Give more time
Remember it takes time for people with Huntington’s to process information and form a response. Ask a question, then wait for an answer – don’t interrupt the thought process by repeating your question or putting it another way.
- Avoid distractions
Try and focus on the conversation. Get the person’s attention and then tell them what you would like to say. Avoid talking to someone if the TV is on. Where possible, keep them away from noise and distractions when talking to them. Don’t expect them to walk and talk or eat and talk at the same time. This can be hard as we are used to using meals as a time for conversation. It may take a bit of time to see what works best for them: they may, for example, enjoy going for a coffee and a cake but want to chat first, then have a quiet time to eat and drink, then the conversation can be picked up again.
- Limit choices
Ask closed questions (i.e. ones that require a ‘yes’ or ‘no’ answer) so they don’t have to search for the answer. This may feel counterintuitive as we think of choice as being empowering, but for people with Huntington’s making a choice can often feel difficult and stressful. It’s the same for most of us; we would prefer a multiple choice test than having to write an essay - it’s much easier to respond when the answer is already there.
It can take a lot of effort for people with Huntington’s to speak, so try to listen to what they’re saying. This can become tricky if there is a lot of repetition.
A speech and language therapist (SALT) can also help with difficulties with communicating, as well as eating, drinking or swallowing. You can get a referral to a SALT through your GP or a specialist Huntington’s clinic.
For more information on managing communication difficulties, download our fact sheet.
Managing challenging behaviour
Most carers of people who have Huntington’s will notice behaviour changes in the person they’re caring for. This is due to changes in their brain and is not something they can do anything about. It can be difficult for the person themselves and also for the people around them.
- Although there are some common behaviour changes that we often see, everyone’s experience of Huntington’s is different. As a family member or carer of someone with Huntington’s, the best thing you can probably do is to find out what triggers certain behaviours and develop some coping strategies for managing them.
- The best way of managing a person’s challenging behaviour is often to learn to modify your own behaviour when you’re with them.
- It’s also important to know, however, that some behaviour change can be modified with medications. If behaviour is becoming a problem, it’s worth speaking to your clinician about this.
There are some really simple but key things to think about in relation to behaviour that apply to all of us, whether or not we have Huntington’s disease.
We all tend to be more grumpy or irritable if we are hungry, thirsty, in pain, tired etc. In the case of someone with Huntington’s, these changes may be more exaggerated and it may be harder for them to recognise there is a problem and do something about it.
You may also notice that if someone usually has involuntary movements (chorea), then if they are hungry, thirsty, tired or agitated, their movements may become worse. This can be an early sign that you should offer a snack or drink or look for another cause and solution from the following checklist.
Useful checklist for managing challenging behaviour
- Nutrition - is the person hungry? Hunger can lead to an increase in movements and bad moods. Managed hunger can improve movements, lessen frustration and fatigue and improve overall wellbeing.
Tip: Encourage eating and drinking little and often.
- Pain - someone with Huntington’s might not tell you how they feel or if they are in pain.
Tip: Always ask about pain.
- Temperature - are they too hot or too cold? People with Huntington’s sometimes have difficulty regulating their body temperature and this can affect their mood, motivation and overall wellbeing. They might not tell you.
Tip: Always ask and look for signs of heat or cold. Consider clothing, room temperature, ice packs, fans, blankets, etc.
- Communication - difficulty in communicating can increase anxiety and frustration and affect involuntary movements (chorea). People with Huntington’s communicate better when they are not hungry, not tired, not in pain, not too hot or cold, and when their moods are stable.
Tip: Speech therapy can provide useful advice and exercises. Also look at our article on Managing communication difficulties.
- Moods - what’s their mood like? Are they feeling depressed, frustrated, irritable, angry or more impulsive than usual? I
Tip: Go through a moods checklist; are they hungry, in pain, too hot or cold, tired, not sleeping, frightened, constipated, nauseous, or struggling to communicate? Has something changed in their routine?
- Mobility - are they falling more?
Tip: Check nutrition. Check for signs of infection.
- Sleep and fatigue - having Huntington’s can be hugely tiring. Poor sleep is quite common and can cause a drop in mood and overall wellbeing. Sometimes people with Huntington’s are more active at night and sleepy in the day, which can be difficult to cope with.
Tip: Encourage short power naps in the day. Follow the Simple rules for a good night’s sleep in Huntington’s disease.
- Medication - are they over- or under-medicated? This can affect nutrition, moods, communication and behaviour. Has there been a recent change in medications?
Tip: Ask for regular review of medications by GP or consultant. If their behaviour has worsened following a change in medications, consult the prescriber.
- Emotional support and life enrichment - do they have opportunities to enjoy themselves and feel loved? How is their self-esteem?
Tip: Recreation, exercise and family support can all help mood and behaviour. Look at our quality of life video for inspiration.
- Other health conditions - if none of the above factors apply, there might be another medical problem.
Tip: Consider if any other health conditions might be affecting the person with Huntington’s and explore this possibility with your GP.
Adjusting your own behaviour
In the longer term, there are many changes you can make yourself to stop or prevent challenging behaviour. This isn’t easy and it can be exhausting, but some things can become habits.
We know that most people with Huntington’s find it hard to make choices.
- Instead of asking “What do you want for dinner?” ask “Would you like fish and chips for dinner?”. Some people may even prefer it if you say “We’re having fish and chips for dinner”.
- If you are in a restaurant it can be overwhelming for someone with Huntington’s to see a large menu. If you know what they usually like, try suggesting that they have this. This may make the experience more enjoyable for them.
Ask yourself if something is a problem, and if so, who it’s a problem for. For example, someone with Huntington’s may not want to be around other people. This can be upsetting as you may feel that they are missing out on social interaction. However, the person themselves may find being in a group overwhelming and may be much happier in a quiet place by themselves.
- You might want to think about having fewer people in the home at one time or arranging things so the person you’re caring for has someone to talk to on a one-to-one basis, in a quieter place, away from the noise of a larger group.
- Don’t feel bad if the person you’re caring for takes themselves away when people come over. Perhaps check afterwards if they are OK and then let them catch up on all the news in a more peaceful environment.
There are many more strategies for managing behaviour in our fact sheet which looks at some common issues and solutions.
The book ‘Hurry up and Wait’ by Jimmy Pollard is very helpful in understanding why people with Huntington’s can behave in certain ways and offering useful solutions. It is available to purchase from our shop.
If your situation is more complicated and potentially abusive or putting anyone (including you) in danger, please look at our Carers Guide which gives advice on how to stay safe and protected.
Other sources of help
Alongside learning more about behaviour it can also be really helpful to talk to others in a similar position. Find out if there is a local Huntington's Disease Association branch, support group or carers group in your area or use our online message board to talk to other people facing similar challenges.
Your local SHDA will also be able to talk through behavioural issues with you and look at possible solutions.
If you are struggling with any aspect of managing behaviour, please do contact us. We’re here to help.
Financial help for carers
As a carer, you are likely to be affected financially in various ways by the costs of caring, and the impact of your caring responsibilities on your ability to work. There are a number of different benefits that are affected by being a carer and it is worth trying to find out what help you might be entitled to.
This is the main benefit for carers. You may be eligible if you are looking after someone for 35 hours a week or more.
Usually, you will not be able to receive Carer's Allowance once you receive your state pension. However, you will still have an ‘underlying entitlement’ to it, and this can help you qualify for other means-tested benefits and related payments, such as the carer premium.
Claiming Carer’s Allowance can affect the other benefits that you and the person you care for get, so it’s important to get detailed advice from an expert benefits advisor, such as a Citizens Advice adviser, to find out if you will be better off claiming it.
The carer premium is a payment included in the calculation of any means-tested benefits you get, and can mean you get more money if you're also paid Carer's Allowance or have an underlying entitlement to it.
If you are caring for someone for more than 20 hours a week, Carer’s Credit should ensure that your National Insurance contributions are still paid, just as if you were working during that time. This means your caring role will not affect your future right to a state pension.
To get Carer’s Credit, you need to complete this form.
If you provide care to someone with Huntington’s, you can be assessed by your local authority to find out if you are entitled to some financial and/or practical support. Local authorities now have a legal duty to assess any carer who asks for an assessment.
Local council / social services
As a carer you could be eligible for support from your local council. This could be money to pay for things that make caring easier, or for the cost of respite (care that would enable you to have a break). Local authorities have a legal duty to offer a Carers Assessment to any carer who requests one or who appears to need support. This assessment determines whether you meet certain criteria for support from your local council. If you do, your council should contact you to discuss what help might be available. Your local Specialist Huntington’s Disease Adviser can help with this process.
When social services assess the person you care for, they will look at what help they need with personal care (such as washing/dressing or going to the toilet) and whether external help is needed with this. If the person needs help with personal care, they may also be entitled to help with the shopping and housework. A financial assessment will be carried out and a decision made as to whether you have to pay the full cost of care or a contribution towards it. Most people are expected to make some contribution as benefits can be used for this.
Your social worker or GP can also arrange for a home assessment by an occupational therapist to see if adaptations could help, e.g. grab rails, a seat for the bath, a home care alarm, etc.
If you are entitled to financial assistance towards your care, your social worker may offer you the option of Direct Payments. These allow you to arrange your own care services.
Social workers can also advise and help on many social and care issues, such as sources of information on benefits and funding, care packages, respite services, residential and nursing homes. Contact your local council direct or ask your GP to refer you.
Carers of children and young people
You can find more information in the Juvenile Huntington's disease section.
Sources of advice and help
Carers UK has information about sources of financial help and benefits, including how to challenge a benefit decision if you feel it is wrong. Information is also available online from the Carers Trust.
The Government services and information website has an online benefits checker.
You can also get advice on how to apply for support and make your case as a carer of someone with Huntington’s from your local Specialist Huntington’s Disease Adviser.
Leisure, travel and help with costs
If you are caring for someone with Huntington’s, you may find your energy and mood low sometimes. It can help greatly if you are able to make time for activities that help you feel better, physically and mentally, such as exercise and hobbies or even seeing friends.
Depending on the stage of the illness, sometimes you might also be able to enjoy an activity together with the person you are caring for.
Many local authorities offer leisure cards which can help reduce the cost of activities you might like to do when you get a break from caring.
They're often available to people claiming benefits such as Carer's Allowance. They do vary between areas, but there's a good chance you'll qualify if you're a carer with a low income. There may be a small annual charge for the card, from £1 up to around £15. Discount leisure cards can give you discounts of between 10 and 50% on facilities such as local leisure centres, cinemas and theatres.
There’s more information available on the NHS website, including a section on accessible activities, breaks and day trips.
Concessions are available at many venues to a carer accompanying someone with Huntington’s, for example, free cinema or event tickets. Always ask at the time of booking if any concessions apply and mention any special needs such as wheelchair access.
The government services and information website Gov.uk has information about travelling on all different forms of transport for people with disabilities. It includes information on financial savings such as motability scheme (which can help with leasing a car), blue badges and railcards; it also offers advice on getting practical support at train stations/airports etc.
If you can’t find what you are looking for, contact us and we’ll try and help.
If the person you are caring for is an adult, they may at some point become unable to manage their own affairs, such as paying bills or legal matters.
The rules and options in the UK around managing someone’s affairs for them vary depending on whether you live in England, Scotland, Wales or Northern Ireland.
A key question is whether the person you are looking after is currently:
- able to make decisions for themselves (called ‘having mental capacity’)
- unable to make decisions for themselves (called ‘lacking mental capacity’).
If the person you look after is able to make their own decisions now, but may not be able to in future, you could discuss them granting you Lasting Power of Attorney (LPA). You can use this while they still have capacity, and continue to use this if they lose capacity.
There are two types of LPA:
- health and welfare
- property and financial affairs
You can choose to make one type or both.
In England and Wales, The Mental Capacity Act 2005 provides the legal framework for making decisions on behalf of people who lack the mental capacity to make decisions for themselves. The Mental Capacity Act Code of Practice explains how this works in more detail.
The Carers UK website has a lot more detail on this and related matters, including the different rules in different UK nations.
To help someone with benefits, you can apply to be an appointee for the person you are caring for. More information is available on the Government website and you can also contact the relevant benefit department to find out more.
There is also more information elsewhere on this site, including in our at risk section including information about financial matters, insurance and power of attorney.
In order to function as a carer, from time to time you need to have a break from your caring duties. A lot of people find regular respite, such as using a day centre two or three times a week, to be helpful. In addition, having a longer respite break once or twice a year gives both the carer and the person with Huntington’s something to look forward to.
Although awareness is improving, Huntington’s disease remains a very rare illness so respite services may not have experience of looking after other people with it. You could ask your Specialist Huntington’s Disease Adviser to make contact with them and provide information, advice or training.
Respite options that might be available to you include:
- Sitting services: this would involve someone who could come and sit with the person you care for in your own home, normally for a couple of hours a week, so you have the chance to have a short break. Your Social Worker should be able to advise you on the services available locally.
- Day centres: day centres vary greatly in the services they provide and the people who attend. They can offer suitable activities for people with Huntington’s and some have their own transport. It is worth considering different day centres in your area to see which one would best suit the person you care for. Some day centres will be free of charge and others will require a financial contribution. Your social worker should be able to advise you on day centres.
- Respite breaks in a care home: a carer’s assessment should highlight whether you are entitled to respite breaks from your caring role. This is normally a chance for the person you care for to have a week or two in a care home or specialist holiday centre, so you have a break from caring. You will be means-tested for this and may have to pay the whole amount of a respite break or make a contribution towards it.
- Holidays with help: there are a number of options for people with disabilities to have a holiday with help, either by themselves or with their partner or carer. Tourism for All has a number of options.
Getting the most out of life with Huntington's
Keeping active and doing things you enjoy can help you cope with the big challenges of Huntington’s, whether you have the disease yourself or you’re caring for someone who has it. It can help to combat feelings of anxiety and stress, provide opportunities to make new friends, and bring more joy and fun into your life.
Hobbies and sports
- Children and young people with Juvenile Huntington’s may find that activities such as sports, gymnastics, horse riding, dancing and music help them to feel independent and give them a sense of achievement. Contact a Family has a helpline giving information about leisure activities.
- Hydrotherapy can help to relieve certain symptoms such as stiffness, rigidity and muscular aches and pains. Your GP or physiotherapist can advise if it’s available in your area.
- Swimming is a great way to be more active if movement is becoming tricky, and can give a feeling of freedom and relaxation. It’s also good for keeping the muscles in the arms, shoulders, chest and back strong, as well as for developing stamina.
Having Juvenile Huntington’s doesn’t need to stop you from visiting places and going on holiday.
- You can get help and assistance from transport staff when travelling by train or plane. Find out what help you’re entitled to on the Transport if you’re disabled section of the government’s information website.
- The Motability Scheme can help you to lease a car if your child is aged three or over and is entitled to either the: higher rate of the mobility component of the Disability Living Allowance or the enhanced mobility component of the Personal Independence Payment.
- You may also be eligible for a Blue Badge if your child meets certain requirements. This allows you to park near to your destination, often for free. You can find some useful information about applying for a Blue Badge on the Citizens Advice website.
- Disabled people are usually entitled to free or discounted bus travel in the UK, although the offer and eligibility criteria vary slightly between UK nations. You can find out more information and apply online here: England; Scotland; Wales; Northern Ireland.
Some organisations provide holidays and short breaks for children with disabilities, either with or without their families. Your social services department, GP or health worker can give you a list and may be able to make a referral to some of the organisations for you.
Some useful organisations:
- The Calvert Trust runs outdoor adventure activities in the countryside for disabled children and their families. The trust has three purpose-built centres with full-board or self-catering accommodation around the UK, offering a range of sports and recreational activities designed to help people fulfil their potential.
- The Holiday Homes Trust provides affordable breaks in specially adapted accommodation at popular holiday sites for families, carers or groups who have a member with a disability.
- Contact a Family gives advice and information on getting charitable grants and other financial help towards the cost of a holiday. The charity has produced a useful guide called Holidays, play and leisure (PDF, 1.03Mb).
- The Disabled Holiday Directory is an online directory of organisations and venues that cater for children and adults with disabilities, both in the UK and abroad.
- Tourism for All is a national charity that provides information on accessible holiday venues and places in the UK and abroad for disabled people, their carers and family.
- Revitalise is a national charity that specialises in short breaks throughout the year for adults and children (aged six and older) with physical disabilities, dementia or sight impairment, and their carers. The charity has holiday centres around the UK, and also offers holidays in Spain and Germany. All Revitalise centres are registered as personal care centres and most are also registered as nursing care centres. However, the charity does not have the resources to provide holidays for people who are bed-dependent, or who have uncontrolled epilepsy, learning difficulties, or mental health problems.
- The Disaway Trust is a registered charity that organises group holidays internationally and in the UK for people with physical disabilities aged 16 to 80 years and their carers.
- Holidays for All is an umbrella website for various specialist tour companies and disability charities. It lists a range of holiday providers who specialise in breaks for people with sensory and physical disabilities, their friends and carers, around the UK and abroad.
Keeping active with Huntington's disease
Keeping active with Huntington's disease
This resource provides information and tips and hints on how to make a physical activity plan that is unique for a person with Huntington’s disease. The resource was developed by researchers at Cardiff University, the Huntington’s Disease Association of England and Wales, Carer’s Trust Wales and carers and people with Huntington's disease. You will need to download both the booklet and the cards.
The exercises are based on the 'Move to exercise' resource that you can find below.