Due to the inherited nature of Huntington’s disease, the death of one individual does not necessarily mean the end of Huntington’s for a family.

Support after death

After someone has died and the funeral is over, you and your family need time to adjust. You may struggle with losing the person combined with possible guilt, possible relief that their suffering is over and then guilt about the relief.

Where to go for support

  • Local bereavement counselling via your GP
  • Local carers groups who may offer support
  • Cruse bereavement care provides support and runs a helpline so that you don't have to go through it alone.

    Visit Cruse website

  • Local hospices often offer bereavement counselling if the person with Huntington’s has used their services. Hospice UK, the national charity for hospice care, has a ‘find a hospice’ search online where you can find local services.

    Visit Hospice UK website

  • GriefChat bereavement councellors

If you need help and don’t know where to turn, contact us and we’ll try to find what you’re looking for or put you in touch with the right person.


We are delighted to partner with GriefChat bereavement counselling, to offer our supporters a safe place to talk about their experiences and to get the support that they need. GriefChat provides emotional support for bereaved people, access to trained bereavement counsellors and referral into other specialist bereavement services.

GriefChat was created by bereavement experts and by clicking on the GriefChat box (bottom right), you can chat directly to a specially trained bereavement counsellor. GriefChat counsellors are experienced in supporting bereaved people and will listen to your story, explore how your grief is affecting you and help you to find any additional support you might need. GriefChat is a completely free service and is available Monday-Friday,9.00am-9.00pm (excluding Bank Holidays). 

Support for carers

If you were the main carer, you are not just losing the person, but also your role. Many carers have given up work to care for someone and may have lost friends and their social life along the way. You may also go from having a wide range of professionals around you to that coming to an end. People might find it difficult to know what to say to you. Your Specialist Adviser is still there to support you.

Carers UK also provides very good information and support on caring, grief and bereavement. 

Visit the Carers UK website

Practical matters

After the death of a loved one there will be many practical matters to deal with. The official UK government website has information on what to do if someone dies, including registering a death, reporting a death to a coroner, arranging a funeral, dealing with tax and benefits, bereavement allowances and bereavement payments.

Visit the UK Gov website