2025 HDBuzz Prize: ACTing on HD: Exploring Acceptance and Commitment Therapy to Improve Mental Health in People with Huntington’s Disease and Their Caregiver

A group of researchers at the University of Pennsylvania, USA, has recently carried out an investigation to explore whether using a type of talking therapy, called Acceptance and Commitment Therapy (ACT), can help improve the mental wellbeing of people affected by Huntington’s disease (HD). The study, published in the Journal of Huntington’s Disease, combines a short review of earlier work on ACT with the detailed report on a person with HD who underwent an online caregiver-assisted ACT programme. The results showed promising effects of ACT on a number of psychological difficulties in both the person with HD and his caregiver.

Psychological Difficulties in HD

HD is associated with a heavy psychological load. Alongside the well-known movement and cognitive problems, people with HD often face psychological difficulties such as depression, anxiety, irritability, apathy, emotional dysregulation, obsessions, and ‘perseverative’ behaviours (i.e., getting stuck on the same thoughts or actions). These issues can be experienced even years before the onset of movement problems (i.e., at the ‘premanifest’ stage, HD-ISS stage 0) and have been linked with a risk of suicide which is two to seven times higher than in the general population. Growing up within an HD family has also been linked to increased experiences of childhood trauma.

In addition, since HD is inherited, taking a predictive genetic test can be exceptionally stressful from a psychological perspective and lead to difficult family dynamics, which may explain why less than one in four persons at risk worldwide choose to get tested. At the same time, caregivers of people with HD – often represented by partners, relatives, or friends – may also experience several psychological difficulties, including burnout, anxiety, depression, as well as social issues such as stigma and isolation.

What Support Can HD Families Get?

Although access to psychological support is often mentioned as a top priority by HD families, the current landscape of psychological interventions for this population is extremely limited, with very few studies carried out so far and no gold-standard recognised approach. In addition, the availability of psychological support tends to vary dramatically both between countries as well as even within the same country, as specific regions may have fewer opportunities and resources.

This limited availability is perhaps unsurprising when we consider how emotional and behavioural difficulties in people with HD have been traditionally seen under a purely biomedical lens, which means that common issues such as high levels of anxiety and low mood are often considered a consequence of brain degeneration, and not a reflection having to adjust to the fact that, you know, having HD really sucks. 

What is Acceptance and Commitment Therapy (ACT)?

Acceptance and Commitment Therapy (ACT) is a modern form of psychotherapy which, in a nutshell, aims to help people make room for difficult thoughts and feelings while moving towards what matters most to them. The approach is based on six main principles/skills:

1. Acceptance: making room for tough feelings instead of fighting them.
2. Defusion: noticing thoughts and separating oneself from them.
3. Being Present: paying attention to what is happening right now, without ‘replaying’ the past or jumping to the future.
4. Self-as-Context: remembering that one may have thoughts and feelings but is not defined by them.
5. Values: knowing what kind of person one wants to be and what matters to them.
6. Committed Action: taking small, steady steps that match one’s values, even when feelings are tough.

These skills are often taught and practised through metaphors and short exercises which can be carried out in person or virtually, as well as in one-on-one or group therapy sessions. 

Crucially, unlike some other forms of psychotherapy such as traditional Cognitive Behavioural Therapy (CBT), ACT does not ask people to challenge sad or difficult thoughts or to prove them wrong, but rather to change their relationship with them. This is particularly helpful for individuals affected by HD, as it acknowledges and respects the genuine losses, fears, and worries associated with the condition. 

A Review of Earlier ACT Work

ACT was developed in the late 1980s by the American psychologist Steven C. Hayes as an evolution of traditional Cognitive Behavioural Therapy (CBT). Since then, over 900 randomised trials have investigated the efficacy of this approach, including one from the World Health Organisation (WHO), which now formally distributes it as a form of therapy. 

ACT has shown benefits in tackling depression, anxiety, suicidality, and substance misuse across several chronic conditions – such as cancer, obesity, hearing loss, and chronic pain – as well as neurodegenerative illnesses more akin to HD, including Parkinson’s, multiple sclerosis, and amyotrophic lateral sclerosis. Despite this, no formal exploration of ACT with people with HD had been published until this study.

The Case Report

A 52-year-old white American man (whom we shall call ‘Alan’ in this article), living with HD as well as bipolar and obsessive-compulsive issues, was invited by the authors’ US clinic to undergo a six-session ACT programme adapted from earlier work in other chronic conditions (e.g., HIV, cystic fibrosis, and cancer). All meetings took place online between May and June 2022. Alan attended these alongside his ex-wife, who was also his main caregiver and close friend. Her presence was found to be especially helpful in calming Alan’s anxiety and facilitating exercises and homework between sessions. 

Each session was inspired by one of ACT’s six core principles/skills: 

Session 1 helped the pair list their top five values and notice obstacles – what did Alan stand for and what got in his way?

Session 2 introduced acceptance through metaphors showing how struggling to control feelings can make things worse – e.g., how did Alan try to avoid or push away anxiety, depression, and worries about HD?

Session 3 focused on committed actions – what small, yet consistent moves towards values could Alan take even on bad days?

Session 4 taught present-moment awareness and normalised acceptance of painful thoughts – how could Alan allow anxiety, depression, and fears about cognitive decline and life expectancy to be here now? 

Session 5 practiced defusion – how could Alan change his mind’s attachment to his thoughts?

Session 6 summarised previous sessions and explored the idea of self-as-context – how could Alan remind himself he was more than his own feelings or a diagnosis and create flexibility by changing his habits? 

Before and after therapy, Alan took a series of standardised questionnaires to measure anxiety, depression, defusion, and quality of life. 

What Changed After Therapy?

At the end of therapy, Alan’s depression score dropped from ‘moderate’ to ‘mild’, showing a clinically significative change. His quality of life scores also improved in physical function, general worries, and mood, and he was overall found to be less ‘hooked’ on troubling thoughts (i.e., higher ‘defusion’). On the other hand, Alan’s anxiety remained ‘moderate’, which may be due to his long history of obsessive-compulsive difficulties. Beyond these scores, Alan also mentioned that the sessions were enjoyable and useful, and his caregiver found them helpful in realising she had been neglecting her own self-care and to start finding some time for herself. 

What Does This Mean?

Since this was a single case study without a control group, we need to be careful not to overstate the significance of its results. However, Alan’s decrease in depression, increase in defusion, and improvement in quality of life after only six sessions do suggest that ACT may be a viable and helpful psychotherapy approach for people with HD. Randomised controlled trials (RCTs) are now needed to compare ACT with usual care or other psychotherapies, explore different delivery formats, and monitor efficacy across different HD stages.

TL;DR

• HD is associated with significant psychological challenges that can affect both people with HD and caregivers.
• Psychological care options for HD are scarce, especially due to biomedical perspectives that overlook the burden of adjusting to HD.
• Acceptance and Commitment Therapy (ACT) aims to help people accept difficult thoughts or feelings and unhook from them, stay present, identify values, and take value-guided actions.
• A team at the University of Pennsylvania explored the adoption of an online caregiver-assisted ACT program with a 52-year-old man with HD.
• The results showed improvements in the man’s depression, quality of life, and feeling ‘hooked’ on thoughts; his caregiver found the sessions helpful for her self-care.
• ACT looks promising for people with HD, but evidence is preliminary until more comprehensive trials are carried out.

Learn more

“Acceptance and commitment therapy with Huntington’s disease: A narrative review and case report of a caregiver-assisted intervention“, (open access).

Meet this 2025 HDBuzz Writing Competition Winner

Dr Nicolò Zarotti is an Academic and Clinical Psychologist working in Neuropsychology. He holds a BSc and an MSc in Psychology from the University of Trieste, a PhD in Health Research from Lancaster University, a Doctorate in Clinical Psychology (ClinPsyD) from the University of East Anglia, and a Postgraduate Diploma (PGDip) in Clinical Neuropsychology from the University of Glasgow. He is a Chartered Psychologist (CPsychol) and Associate Fellow (AFBPsS) of the British Psychological Society, an HCPC-registered Practitioner Psychologist, and a Fellow of the Higher Education Academy (FHEA). Dr Zarotti’s main research and clinical work, carried out between the Manchester Centre for Clinical Neurosciences and the University of Leeds, revolves around developing psychological approaches to mental health and cognitive difficulties in people with neurodegenerative conditions such as Huntington’s disease, Parkinson’s disease, motor neurone disease, and multiple sclerosis. 

This year, the HDBuzz Prize is brought to you by the Hereditary Disease Foundation (HDF), who are sponsoring this year’s competition.