Support for carers

If you are looking after someone with Huntington’s, it is very important to do what you can to look after yourself, as well as the person you are caring for. It is common for carers to ‘burn out’ mentally and physically from the demands of looking after someone with high care needs and challenging symptoms, day after day.

Caring for someone with Huntington’s, especially during the later stages of the disease, is very demanding. You are likely to need support, if not now, then in future.

Carers of children and young people

Much of the information here is relevant to you, but also see Getting help with Juvenile Huntington’s.

Sources of support

  • Specialist Huntington’s Disease Advisers (SHDAs)
    We have people throughout England and Wales who run this specialist service - people who understand and know about Huntington’s and have backgrounds in either health or social care. They are there to support you and the person you are caring for. This could be just having someone to chat and off-load to, or it could be telling you what other support services are out there and how to access them.
    Contact your local Specialist Huntington’s Disease Adviser.
  • HDA Membership
    You can join the Huntington Disease Association. Membership is free for people with Huntington’s and their friends and families. By subscribing you will receive a twice yearly newsletter to keep you up to date with our events and research.
    Contact us if you’d like to become a member.
  • Branches and support groups
    We have branches and support groups across the country, run by volunteers who have a link to Huntington’s. They all evolve in their own way to meet the needs of the people who use them. Branches are slightly more formal than support groups, as they have a committee, but the main aim of both is to bring together people who are affected by Huntington’s.
    Contact us for details of Huntington’s Disease Association branches or groups in your area.
  • Message board
    Our association has an online message board where you can find support from people in similar situations. You can also share information and ideas. This is a great way of getting support if you find it difficult to get to a group or if you prefer to remain anonymous.
  • Events
    Each year we hold an AGM and family weekend. There is normally a mix of speakers and workshops. Most people who attend find the topics useful but they most appreciate the opportunity to talk to other people in a similar situation.
    If you would like to get information about the next conference, keep an eye on our events section or contact us to register your interest.
  • 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 (SHDA) 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.
  • GP
    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.
  • Counsellors
    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.

Emergencies

If you are the main carer for someone with Huntington’s, you may feel concerned about who would look after them if something happened to prevent you from looking after them, e.g. you have to go into hospital.

Carers UK has good advice on planning for an emergency. In some areas there are emergency card schemes, often managed by the local council or carers centre. The schemes usually offer a 24-hour response service. Carers carry a card with the scheme's telephone number and a unique identification number. In the event of an emergency, you or someone with you would call the scheme. An operator would look up your emergency plan and make arrangements for replacement care. Check with your local carers' organisation to see if such a scheme operates in your area.

Respite

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 Advisor (SHDA) 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. Holidays for All has a number of options. You can find more information about holiday centres in our section Getting the most out of life with Huntington’s.

Caring for someone with Huntington’s disease can be very difficult. The right support can make a big difference and we’re here to help. You may also wish to contact an organisation specifically for carers, such as Carers UK, which lots of free information online and runs an advice line tel: 0808 808 7777.