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Carers Support

Offering care and support to someone with Huntington’s Disease (HD) can be a rewarding experience but it can also be difficult at times because of the wide range of symptoms and the unpredictable nature of HD. Changes in emotion and thinking can bring strain to personal relationships.  As the condition progresses over time a person with HD will need increased support and assistance. In our HD Information Booklet section the Handbook for Family and friends provides a useful overview on HD. Understanding Behaviour gives a more in depth look at changes that may occur and strategies to support people with HD.

In addition to HDAI's Meetings and Events there are many advocacy and support groups, both national and international that can support you as a HD care giver. HDAI provide access to counselling for people impacted by HD. Counselling is available to people with HD, family members and HD carers. Contact HDAI if you would like to avail of counselling. It is important for carers to seek support and maintain their own well-being see Minding Your Mental Wellbeing.

Carers workshops focus specifically on the needs of those who live with and care for someone with HD. HDAI facilitate a carers workshop at our Annual Members Weekend in Cuisle, Co Roscommon and at other times throughout the year. As Huntington’s disease is a rare condition, isolation is often felt by those caring for a loved one. The workshops and support meetings allow carers to meet and share their struggles and concerns with others in similar situations. The Dates of upcoming workshops will be published in our news section and quarterly newsletters or you can phone us for information.

HD Seminars and our Annual respite weekend gives carers an opportunity to meet other carers, seek information and avail of peer support. HDAI's Family Support Officer is available to speak to you in confidence - call 1800 393939.

Thanks to the tremendous help we receive from voluntary fundraisers HDAI can provide financial assistance to support family care givers who care for loved ones affected by HD. Please contact us if you are caring for a loved one and wish to apply for assistance for supports including:

  • Counselling
  • Funding towards holistic therapies for yourself or a person with HD
  • Funding towards a short break or a family visit
  • Funding towards hospital visits and health appointments
  • Funding towards excessive heating bills

For further information please contact Liz, Family Support Officer on 1800 393939 or email  *Please note annual limitations per family apply

Other resources include

In order to maintain that caring role, you need to be feeling as good as you can... 

Dr Andrea Higgins

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