Research findings on psychological self-care in people with pre-manifest Huntington's disease
In October 2025, researcher Niamh Duffy from Bangor University got in touch asking for help with her research exploring how people with pre-manifest Huntington’s disease have adapted their psychological self-care.
This saw nine adults with a genetic diagnosis of Huntington’s disease, but no symptoms yet, from across the UK and Ireland share their personal stories. This research aimed to deepen the understanding of the experiences and needs of people in this position and to hear what support would be most beneficial.
We can now share the results of this research:
- Psychological wellbeing meant different things to different people. The participants’ stories showed that psychological wellbeing was closely linked to their identity, relationships, and life experiences.
- Psychological wellbeing changed over time. Participants told stories about caring for themselves differently at different stages of their lives. They also found ways to keep feeling like themselves, even while their lives changed.
- Psychological wellbeing was affected by family experiences and wider social attitudes about Huntington’s disease. This could mean how other people, such as professionals and the media, talk about Huntington’s.
- Many participants balanced community and connection with Huntington’s disease (for example, through support groups or advocacy) and taking breaks from thinking about it. This balance helped participants to stay well.
- When accessing support, like therapy or groups, it was important that this was the right type of support and at the right time for that person.
- Hope helped participants look after their psychological wellbeing. Hope meant different things to different people. For example, it could mean hope for future treatments, being able to do the things that matter even with Huntington’s disease, or feeling in control of what lies ahead.
Overall, these findings suggest there is no “one-size-fits-all” approach to supporting people with premanifest Huntington’s disease. Psychological or emotional support should therefore fit with an individual’s identity, family situation, preferences, and stage of life.
Findings also suggest that supporting hope, choice, and opportunities is important for people to feel in charge of their own stories about living with Huntington’s disease, helping them to stay well.
Thank you to Niamh for sharing the results of her study with us.
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