Understanding the importance of resources and support groups for individuals and families living with Huntington’s disease
Huntington’s disease (HD) deeply affects not only the lives of patients, but also those of their families and caregivers. In these panel discussion videos, four social workers share their perspectives on the resources and support groups available for patients with HD, their families, and caregivers.
Impact of HD on patients, families, and caregivers
HD is characterized by a combination of motor, cognitive, and behavioral symptoms, including involuntary movements, cognitive slowing, depression, irritability, and apathy.1 As the disease progresses, these symptoms can interfere with the patient’s ability to perform daily activities independently,2 which causes them to require more support from their family or professional caregivers.
Outcomes from two surveys reported that patients with HD and their caregivers highlighted the impact of cognitive and behavioral symptoms of HD, with caregivers observing more symptoms than those reported by patients.3 Family caregivers’ burdens include negative experiences with health and social care services, dissatisfaction with the caregiving role, feeling of role overload, and concerns over the inherited nature of HD.4 One study conducted in the US and UK indicated that a primary concern of family caregivers was the lack of knowledge about HD from physicians and the insufficiency of services to support them and the affected person.5
Resources to help physicians support patients, families, and caregivers
There are a number of resources on HD and support available for both patients and their carers, including written resources, support groups, and local community resources. The latter can provide useful information to help navigate common challenges, such as accessing disability allowance, long-term care, and housing in different states. In this panel discussion, four social workers encourage physicians to take the time to reach out to one of the many non-profit organizations and their continuing education programs to learn more about the disease and resources available for patients. They highlight the importance for physicians to first ask questions and build bridges with the patients or caregivers, and then assure them that there are resources available to help them navigate their future. It is important to make patients and families aware that there is a lot of inaccurate information available online and to direct them to the right resources. Additionally, physicians should emphasize that there are numerous clinical trials ongoing for HD and that if travel is a barrier to participation, trials may pay for patients’ transport and housing.
When you are talking to a person who is at risk, or has been tested positive or negative, or who is symptomatic, please leave them with a feeling of hope.
Click here to hear more from social workers on available HD resources to provide support and education to persons and families with HD
Benefits of support groups for patients, families, and caregivers
HD symptoms can lead to increased irritability and apathy of patients, even in the pre-manifest stage.3 It is therefore important to encourage patients and families living with HD to join a support group to connect with others with similar experiences. Everyone in the HD community can access a support group, including caregivers, those living with HD, and those at risk.6 These support groups can offer emotional support and guidance on challenging situations.6
In this panel discussion, the social workers discussed the benefits of support groups for both patients with HD and their families or caregivers. They highlighted the importance of encouraging individuals to try until they find the right professional- or peer-led group for them, as these can provide human contact and connections, making people feel less alone. They also noted that support groups are places for people to talk about their experiences. The social workers noted that there are sad moments during the discussions, but there is also laughter and sharing of experiences. This may help individuals feel empowered to move forward with and overcome challenges. Support groups may also be a way for caregivers to connect with other caregivers, providers, or resources in the HD community.
The panel emphasized that physicians should address the stigma around support groups. Physicians can help clarify with patients and caregivers that these are not therapy sessions, but rather places where people can share their experiences and feel part of a community. The panelists encourage relabeling the support groups as ‘meetings’ or ‘educational groups’ to potentially help overcome this stigma.
The idea behind it is to help people … feel connected to people that get what’s going on without words being spoken.
Click here to listen to the panel discuss the benefits of support groups. A list of available HD resources is also provided at the end of the video.
Bates GP, Dorsey R, Gusella JF, et al. Huntington disease. Nat Rev Dis Primers 2015;1:1–21.
Ross CA, Aylward EH, Wild EJ, et al. Huntington disease: natural history, biomarkers and prospects for therapeutics. Nat Rev Neurol 2014;10:204–16.
Simpson JA, Lovecky D, Kogan J, et al. Survey of the Huntington’s Disease patient and caregiver community reveals most impactful symptoms and treatment needs. J Huntingtons Dis 2016;5:395–403.
Domaradzki J. The impact of Huntington disease on family carers: a literature overview. Psychiatr Pol 2015;49:931–44.
Skirton H, Williams JK, Jackson Barnette J, Paulsen JS. Huntington disease: families’ experiences of healthcare services. J Adv Nurs 2010;66:500–10.
Huntington’s Disease Society of America. HDSA support groups. Available at: https://hdsa.org/find-help/community-social-support/hdsa-support-groups/ (Accessed April 2022).
