Evolving Needs, Evolving Care: Adapting Psychological Support Across Different Stages of Huntington’s Disease

A recent collaboration between researchers at the University of Leiden and the Huntington Expertise Center Topaz Overduin in the Netherlands has focused on an important yet often overlooked part of Huntington’s disease (HD) care: psychological support and what psychologists are doing in real clinical practice to help people with HD.

More specifically, the study aimed to explore which psychological interventions are being used for people with HD in the Netherlands, and how these approaches change across different stages of the condition. The researchers also sought to identify the main barriers that make psychological care difficult, as well as the factors that help psychologists provide better support.

These topics are especially important for HD family members, as affected individuals often experience complex symptoms, and psychological care must be adapted to their evolving needs.

How the Research Was Carried Out

The study used a qualitative research method, which means it focused on people’s experiences, opinions, and professional knowledge rather than numbers or test results. The researchers interviewed 13 psychologists from specialised HD care centres in the Netherlands.

Psychologists typically hold a doctoral degree in psychology (such as a PhD, PsyD, or DClinPsy) and focus on talk therapies and behavioral interventions. They cannot usually prescribe medications, but they may work with medical professionals who can, such as neurologists or psychiatrists. These psychologists had at least four years of experience with HD, and on average they had nearly 15 years of general clinical experience. 

The interviews were semi-structured, meaning the researchers had a list of key questions they wished to cover but also allowed the discussion to develop naturally and be led by the participants. After carrying out the interviews, the researchers analysed the data with Thematic Analysis, a qualitative technique which allowed them to identify recurring themes and ideas that appeared repeatedly across the interview conversations.

Different Views of Psychological Interventions

One of the first things the study found was that psychologists do not all have the same definition of a psychological intervention. Some of them defined this broadly, believing that almost anything a psychologist does to support someone may count as an intervention, including informal conversations. 

Others used a narrower definition and thought that interventions need to be more structured and based on formal therapy approaches or treatment protocols.

This difference is important because people with HD often need both formal psychological treatment and informal emotional support, and no one approach or model of therapy is likely to fit neatly everyone’s needs.

Psychological Care in the Early Stages

The study found that, in the Netherlands, early psychological support often focuses on people who are at risk, people who have tested positive but do not yet show symptoms (‘premanifest’), and people who are beginning to develop early symptoms (‘early manifest’).

For these individuals, psychologists often provide genetic counselling and emotional support, which can help them deal with uncertainty, fear, and difficult choices around testing or family planning. For example, some people may want to know whether they have the gene before deciding to have children, while others may struggle with anxiety about the future.

Early psychological care can also help people manage low mood, work-related stress, and worries about whether small changes in thinking or behaviour might be early signs of HD.

EMDR for Trauma

Another important finding was that some psychologists used Eye Movement Desensitization and Reprocessing (EMDR) during the early stages of HD. EMDR is a type of trauma therapy based on rhythmic and repeated activities (e.g., following the therapist’s finger) performed while bringing painful memories to mind, with the aim to help the brain ‘file them away’ differently.

In these psychologists’ experience, EMDR could help people process painful memories or emotional stress linked to the risk of HD, the diagnosis itself, or difficult life experiences.

However, the researchers also found that EMDR was used less often in later stages of  HD because the cognitive (thinking) symptoms can make this type of therapy more difficult to adapt and deliver effectively.

Some psychologists also mentioned using or considering ‘flashforward’ techniques (i.e., helping people process scary ‘what if’ images in their mind) for people who feared future decline, but this was not common and had limited reported success.

ACT and CBT in the Middle Stages

As HD progresses to the middle stage, acceptance and commitment therapy (ACT) and cognitive behavioural therapy (CBT) appeared to be the most popular psychotherapy approaches.

CBT is a therapy that helps people change unhelpful thinking and behaviour patterns so they can feel and function better, while ACT focuses on helping people accept difficult thoughts and feelings while encouraging them to live a meaningful life based on their core values. 

According to the psychologists in the study, ACT was especially useful to help people manage anxiety, depression, grief, uncertainty, obsessive-compulsive behaviours, relationship problems, and changes in family life.

CBT was also used to help with depression, anxiety, passivity, and unhelpful thought patterns. However, psychologists highlighted that CBT works best when people with HD still have strong thinking skills, because it often requires reflection, planning, and the completion of homework between sessions. As HD progresses and cognitive skills decline, CBT may become harder to use effectively.

Care in the Late Stages

In the later stages of HD, people become more dependent on care and may lose awareness of their own challenges. At this point, the psychologists in the study mentioned a need to move away from direct therapy with affected individuals and instead adopt interventions mediated by family members, nurses, and care teams.

For example, psychologists may teach caregivers how to respond to aggression, anxiety, irritability, depression, or obsessive behaviours in ways that prevent situations from getting worse.

The study also mentioned the use of ‘signalling plans’ – preventive strategies developed to identify early signs of severe psychological difficulties which help caregivers decide what steps to take before problems escalate.

All-Stage Support

The psychologists in the study agreed that some forms of psychological support are helpful at every stage of HD. Two of the most important ones identified are psychoeducation (teaching people with HD and families about the disease, its symptoms, and how it can affect the brain and behaviour) and supportive and structuring conversation techniques (SST).

These help reduce fear and confusion because people can begin to understand some of their experiences in more detail and may feel heard, understood, and less alone. Notably, these techniques are not only useful for people with HD, but also for their caregivers who often need additional guidance and support as the disease changes over time.

Main Barriers to Psychological Care

The study also identified several barriers which can make psychological care more difficult. Among these, the biggest was cognitive decline; as memory, planning, self-awareness, and other thinking abilities become weaker, psychological therapies that depend on reflection and learning become harder to use.

Another key barrier is anosognosia, which is when a person with HD may not be fully aware of their own illness or symptoms. This can make therapy difficult because the person may not believe they need help in the first place. 

The use of avoidant coping strategies was also a commonly reported barrier, as some people with HD may ‘deal’ with their condition by developing a tendency to avoid care, deny their symptoms, or refuse to talk about important issues such as driving or future planning.

Finally, the current lack of guidelines designed specifically for mental health care in HD was perceived to be a major barrier. ‘Evidence-based guidelines’ are recommendations for care that are developed for particular conditions and are grounded in the best available research. Without this formal resource, psychologists must adapt treatments from what is used with the general population, rather than follow clear HD-specific indications.

What Makes Psychological Care Better

Beyond identifying the challenges, this study also found several factors that can improve psychological care in HD. Flexibility and creativity were especially important because psychologists often need to change their methods depending on a person’s stage of illness and level of understanding.

Preventive work was seen as another strength: by meeting people early and following them over time, psychologists can build trust and teach coping skills before serious mental health problems develop that can exacerbate the challenges of HD. 

Assertive outreach, such as staying in contact with people and visiting them at home, was also seen as helpful for people who resisted care. Finally, the multidisciplinary approach which characterises the Dutch healthcare system was seen as a major benefit. Psychologists worked closely with neurologists, psychiatrists, physiotherapists, nurses, social workers, and genetics specialists, which made it easier to provide well-rounded and stage-specific support.

Assertive outreach, such as staying in contact with people and visiting them at home, was also seen as helpful for people who resisted care.

Conclusion

This new study shows that psychological care for HD needs to be flexible, personal, and matched to the stage of the illness. In the early stages, care often focuses on counseling, prevention, and trauma support. In the middle stages, therapies such as ACT and CBT may be useful. In the later stages, support often shifts toward helping families and teams to care for the person with HD. 

The article also makes it clear that psychologists need more research, better training, and stronger guidelines to feel fully confident in the care they provide. Even so, the study suggests that experienced psychologists in the Netherlands have already developed thoughtful and useful ways to support people with HD and their families throughout the course of the disease. 

Summary

• This study explored how psychologists in the Netherlands support people with HD at different stages of the disease. 
• The researchers interviewed 13 experienced psychologists working in specialised HD care centres.
• In the early stages, psychological care often focuses on genetic counseling, emotional support, and trauma therapy such as EMDR.
• In the middle stages, therapies such as ACT and CBT are often used to help with anxiety, depression, grief, and coping with change. 
• In the late stages, psychologists often work more with family members and care teams because people with HD may have serious cognitive decline.
• Psychoeducation and supportive conversations are important at every stage of Huntington’s disease.
• The biggest challenges are cognitive decline, lack of awareness, avoidant coping, and the limited number of HD-specific treatment guidelines.