Social Impacts 

The genetic aspect of Huntington’s disease does have a profound impact on family relationships which can lead to complex emotional and psychological dynamics within a family unit. The experience of feelings of guilt, fear, and uncertainty is common as family members grapple with the impact of the disease on themselves and their children.  Living with this set of circumstances can strain relationships and lead to heightened stress levels amongst family members.

The responsibility of caring for someone with Huntington’s disease is often carried out by family members, particularly spouses or young adult children. Family members assume the role of caregivers, providing physical, emotional, and financial support to their loved ones with Huntington’s disease. As the disease progresses the primary carer often find themselves juggling multiple roles, from a partner, child, or sibling into a carer, advocate, and source of emotional support. Whilst the role of carer is extremely rewarding it does take an emotional toll as the carer will focus on the needs of those they are caring for often at the expense of your own. This can lead to carer burnout which can be exhibited through feelings of isolation, experience of disrupted sleep patterns, and feeling emotionally drained. Carer burnout is a serious concern that needs to be addressed through seeking professional help to put proactive steps in place to prioritise self-care.

Due to a lack of overall community knowledge individuals with Huntington’s disease may experience discrimination, lack of understanding, and social isolation. This can lead to feelings of loneliness, depression, and anxiety, as well as limited opportunities for social engagement and participation in activities. Advocacy efforts, support groups, and educational initiatives are important for increasing awareness, fostering understanding, and providing a network of support for those affected by Huntington’s disease.