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 the disease. Changes in emotion and thinking can bring strain to personal relationships. As the condition progresses over time a person living with Huntington's will need increased support and assistance. In our HD Information Booklet section the Handbook for Family and friends provides a useful overview. Understanding Behaviour gives a more in depth look at changes that may occur and strategies to support people living with Huntington's disease.
HSE Carer Supports
For HSE information on Carer Supports see: Carers Support - Whats Available - HSE.ie
Information resources include: Communicating effectively with Health Care Professionals - HSE.ie
Building Better Caregivers is a free online group programme provided by the HSE to support Caregivers. This participatory online course aims to build participants confidence in their ability to manage their care giving tasks and to maintain a fulfilling life.
This online course is open to anyone living in Ireland who is a carer
See information here: Building Better Caregivers
Huntington's Association Supports
Our Meetings and Events provide an opportunity to access information and meet other family members impacted by Huntington's disease.
The Huntington's Disease Association of Ireland provides access to counselling for people with Huntington's, family members and care givers. Contact us 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.
The generosity of our supporters and voluntary fundraisers allows us to offer financial assistance grants to support family care givers. Please contact us if you are caring for a loved one and wish to apply for assistance for supports including:
- 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 Liz@huntingtons.ie *Please note annual limitations per family apply
Other resources include