The Psychology of Huntington's Disease: Therapies, Irritability, and Living with a Progressive Neurodegenerative Condition

Overview

The episode centers on Huntington's disease (HD) from a psychological perspective, highlighting how living with an incurable neurodegenerative condition affects mood, cognition, and daily life. Dr Sarah Gunn discusses how psychological therapies, particularly acceptance and commitment therapy (ACT), can help people adapt to HD, despite the disease's progression and lack of a cure.

Key themes include the shift from a purely biomedical view to a biopsychosocial understanding, the importance of community support, and the ongoing conversation about death, caregiving, and end-of-life care within HD contexts.

Introduction: HD through a psychological lens

This Psych Crunch episode features Doctor Sarah Gunn, a Leicester-based lecturer and HD psychology specialist, discussing Huntington's disease not just as a medical condition but as a psychosocial experience for those affected, including their families and caregivers. Gunn outlines the disease as a genetic, progressive disorder with onset typically in the 30s to 40s, followed by a multi-decade trajectory of motor, cognitive, and psychiatric changes that culminate in dementia and death. The conversation emphasizes that many psychological difficulties historically framed as biomedical consequences may also arise from the systemic context surrounding HD, including social, financial, and healthcare gaps.

Adopting a biopsychosocial approach and ACT

A central thread is the move toward understanding HD in a broader context, where psychological distress is not simply a result of neural degeneration but also of people’s lived environments. Gunn highlights acceptance and commitment therapy (ACT) as a practical framework for helping individuals relate to HD in more flexible ways. This involves changing how people relate to the problem rather than trying to eliminate the problem itself, thereby freeing cognitive resources for meaningful activities and self-care. "not losing hope that things can be better" is presented as a guiding principle in therapy, recognizing the realistic limits of HD while promoting improved well-being.

"not losing hope that things can be better" - Dr Sarah Gunn

Illness experiences: irritability, ‘the tyranny of HD’, and resilience

The interview delves into everyday challenges such as irritability, mood shifts and social friction. Gunn discusses qualitative work led by trainees that reveals irritability is experienced and interpreted differently by patients and families, with one trainee describing HD as a form of tyranny that intrudes on relationships and identity. Yet the research also uncovers resilience, self-compassion, and community supports as people adapt to living with HD, choosing to live alongside the condition rather than fighting an unwinnable battle. A key point is that irritability and mood changes must be understood within the person’s life story and ongoing context, not simply labeled as a personal defect or unattributed behavior.

"There are loads and loads of blocks to good end of life care in Huntington's" - Dr Sarah Gunn

Community, recruitment and representation in HD research

The Leicester HD network, launched with NHS HD services and local researchers, demonstrates the value of grounding research in local communities. Gunn describes early meetings drawing around 60 attendees, illustrating robust community interest in HD research and care. The network collaborates with charitable organizations such as the Huntington's Disease Association and engages national networks to share findings with families and clinicians. The discussion also covers efforts to address underrepresentation in research by partnering with local organizations and training through the Centre for Ethnic Health Research in Leicester to promote inclusive recruitment and research design.

"60 people for the first meeting" - Dr Sarah Gunn

Biopsychosocial factors, culture and access to care

The conversation underlines the financial and policy-related barriers HD patients face, including welfare cuts and disability benefits. Gunn notes that Leicester's diverse, multicultural environment is a strength but also points to gaps in representation within psychology services and HD-related events. The need for culturally informed recruitment and inclusive care pathways is emphasized, with ongoing collaborations to improve access for minoritized groups through local research centers and charities.

End-of-life and caregiving: conversations, capacity and hopes

End-of-life planning is highlighted as a pressing but under-addressed issue in HD. Two PhD projects are exploring how best to support HD patients and families in end-of-life decision-making, noting numerous barriers such as patient reluctance to initiate conversations and clinicians avoiding difficult topics. Anosognosia, where patients lack insight into their own symptoms, complicates caregiving and safety decisions, adding emotional strain for partners and families who must navigate safety versus autonomy.

"There are loads and loads of blocks to good end of life care in Huntington's" - Dr Sarah Gunn

Closing messages: hope, support, and community

In closing, Gunn encourages not only hope for cures but more importantly practical improvements in daily life, urging listeners to seek support from HD communities and healthcare teams. The episode ends with a reminder that better living with HD is possible through therapy, social connection, and caregiver support, even as the disease progresses.

"not losing hope that things can be better" - Dr Sarah Gunn