Talking helps: psychological support tailored to HD improves emotional well-being
– Written by the Moving Forward team on 24th September 2026
A new study, published in the Journal of Community Genetics, shows what the EHA Moving Forward program has learned about supporting the mental health of HD families.
This work shows why psychological support belongs in the standard care offered to families affected by Huntington’s disease. The support needs to address the specific emotional challenges that come with living in an HD family.
As part of the EHA Moving Forward program, two short-term psychological support programs were designed for people affected by HD, one in Spain and one in Romania. Both were built around the realities of HD.
- In Spain, the program used systemic therapy. It had a positive impact on the depression and anxiety levels of participants who were at risk of HD or had premanifest HD (they carry the gene but don’t have symptoms).
- In Romania, the program used cognitive behavioural therapy (CBT). It improved depression, anxiety and negative emotions in participants who were at risk of HD, had premanifest HD or had tested negative for HD.
The article describes some of the work done in Spain, but it focuses on the program developed in Romania. The research team in Romania summarised the main learnings:
1. CBT can help reduce depression, anxiety and negative emotions
Eight weekly online CBT sessions, followed by two group sessions, helped people affected by Huntington’s disease experience less depression, anxiety and negative emotions. However, the program did not significantly improve broader aspects of quality of life. This suggests that short-term CBT is particularly helpful for managing emotional difficulties, but it won’t change every aspect of a person’s life.
2. Psychological support can be important at every stage of Huntington's disease
Emotional difficulties can affect people throughout the HD journey, not only those who already have symptoms. People at risk may struggle with uncertainty about their future. People who carry the gene may worry about developing the disease. Even people who test negative can face difficult emotions, such as survivor guilt or pressure to make the most of their lives. This study included people from all three groups, and together they showed improvements after the program.
3. CBT needs to be adapted to the realities of living with Huntington's disease
Psychological support for people affected by HD needs to address the specific challenges they face. These include decisions about having children, work and career choices, caring for family members, grief, and coping with genetic testing results. This also means that therapists need specialist knowledge about HD and genetic counselling, so they can understand these challenges and provide appropriate support.
What comes next
Both studies were small, and neither had a comparison group, so the results are a first step to understand the impact of psychological interventions in these specific groups The authors are calling for larger studies to confirm the findings.
The message for HD care is clear: mental health support should be available earlier and to everyone across the HD spectrum.
📄 Read the full article (open access): Psychological interventions for individuals affected by Huntington’s disease: effects on depression, anxiety, and emotional well-being. Ciucă A., Trif Ș., Samoilă S., Radu M., Iruela F., Rodríguez Lopera M., Aguilera Vega C., Blanco R., Júlio F., Arnesen A., Moldovan R. Journal of Community Genetics, 2026.
If you want to learn more about Psychology and HD, check the EHA’s Huntington Academy e-learning platform.