Offering care and support to someone with Huntington’s Disease (HD) can be difficult 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 the person will need increased support and assistance. HD Information Booklets provide tips on coping strategies.
It is important for carers to seek support and maintain their own well-being. There are many advocacy and support groups, both national and international (online) , that can support you as a HD care giver. Some are listed in Links and Resources and others are listed below.
HDAI provide services for people impacted by HD including: a National Helpline; Counselling; Support Group and Carer Workshops; HD Specific Publications; a respite weekend and HD Seminars. HDAI's Family Support Officer is available to speak to you in confidence - call 1800 393939.
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 quarterly newsletters or you can phone us for information.
Other resources include: