Sarah is a Clinical Psychologist and university lecturer and has been working and undertaking research with people with Huntington’s disease for around ten years.

Sarah recently contributed to new guidance from the British Psychological Society on psychological interventions for people with Huntington’s. Sarah uses Acceptance and Commitment Therapy (or “ACT”) in her therapy with people with neurological and physical health conditions. She is currently developing an ACT-based course for those supporting people with Huntington’s. 

 

She recently gave a talk for the Huntington’s Disease Association on the subject of Acceptance and Commitment Therapy, so if you find this article interesting, you can watch it here. She will also be hosting an Acceptance and Commitment Therapy course in March. If this is something that you would be interested in, please email us and request to be added to the waiting list.

Below Sarah explains what Acceptance and Commitment Therapy is and how it could be beneficial for people impacted by Huntington's disease.

 

The unspoken assumptions of (some) therapies

Often, the unspoken purpose of psychiatric or psychological support is to fix a perceived “problem” within a person. The problem might be given a diagnostic label – such as depression, or anxiety – which is considered to describe the person’s experienced psychological difficulties. The person might be given medication to reduce those difficulties, or they might be offered some form of therapy. The purpose of the therapy will then be to support the person to change their thoughts and behaviours, such that these difficulties reduce (or ideally disappear entirely).

 

You can see how this sort of approach might be very helpful for someone who has, for example, a phobia of dogs. In this case, the “fix” is to address how the person responds to encountering a dog, including the thoughts they experience and how they behave. They might have frightening thoughts about how the dog might harm them, which cause them to understandably react with fear or panic. A therapist might support that person to gradually increase their exposure to dogs, pairing this with relaxation strategies. Over time, hopefully their anxiety would reduce, and the person might become more relaxed and comfortable around dogs. This type of therapy, for this type of difficulty, is generally pretty successful.

 

Mental health and Huntington’s

But when we think about Huntington’s disease, this sort of approach doesn’t work so well. For the person with a phobia, you can argue that changing their behaviour solves the “problem” – if they stop seeing dogs as a threat, they will no longer feel anxious. And since the risk of being harmed by a dog is usually very low, it benefits us not to let fear of dogs dictate how we behave.

 

But it’s not unreasonable to think of Huntington’s as a “threat”. It affects physical wellbeing, independence, and ability to walk and eat and drink. It changes how a person thinks and behaves. It changes families. It brings grief, loss, and changes in hopes and dreams for the future. And if you have Huntington’s disease or you live in an affected family, it’s completely reasonable to be scared, anxious, stressed or unhappy about that. Changing our thoughts and behaviours won’t stop Huntington’s from causing distress and difficulties (however much we wish it could).

 

"Offering good psychological support to people affected by Huntington’s looks a little different. It starts by acknowledging the circumstances that the person finds themselves in – acknowledging that it can feel distressing, scary and anxiety-provoking and that those are totally reasonable feelings in response to a tough situation. Therapy then instead focuses on helping people to live well, alongside a problem that can’t be solved."

 

Acceptance and Commitment Therapy (“ACT”)

This is where Acceptance and Commitment Therapy comes in. I use ACT to work with people who are struggling with problems that can’t be solved (long-term and/or life-limiting health conditions). And it starts from exactly what I said above: acknowledging and accepting what can’t be changed in our lives, and the pain and distress these difficulties can cause. ACT therapists talk about “clean” and “dirty” pain, which is an important distinction – “clean” pain is part of life (bereavements, health conditions, losses and disappointments) and everyone experiences their share. But “dirty” pain is the suffering we incur by battling against those difficulties, and that pain can be avoided or reduced with practice. 

 

"To that end, an ACT therapist would work with you to help you identify thoughts that are unhelpful or unhealthy, and to start to engage with them differently. They would support you to uncouple or “unhook” from difficult thoughts and emotions, to reduce their negative impact on you, as you learn to live a valued life alongside them instead of fighting against them. ACT also draws a lot on mindfulness techniques, increasing your awareness of the here-and-now and connecting with the present moment, which can also help you to step back from the pain associated with difficult thoughts and feelings."

 

After working with you to understand your situation and the distress you’re experiencing – which might take some time and discomfort, as you face difficult emotions and experiences head-on – an ACT therapist would support you to find ways to live a richer, meaningful life alongside those difficulties. They do that by guiding you to identify your values, the things that really matter to you – a bit like compass points, that guide you through life and help you make decisions. Quite often, we can find that living in a difficult situation leads to tough choices, and we might not always feel able to keep to those values that are important for us. Over time that can make life feel less rich and meaningful, so identifying what truly matters to you is a crucial step in therapy. Your therapist might help you do that by asking you to choose the values that feel most important to you from a list, giving you exercises to think about what matters to you, and asking you to reflect on important choices in your life.

 

"Once you’ve identified your values, an ACT therapist can then support you in taking “committed action” to align yourself with those values in your everyday life. That often revolves around developing goals for yourself that serve these values, over the short and longer term. What’s really helpful for people affected by Huntington’s disease is that ACT emphasises the adaptability of your values, compared to goals which are more concrete."

 

Consider the difference between the goal “I will find a new hobby” and the value “it’s important for me to keep my mind active”. Once you’ve found your new hobby, you have achieved that goal and can tick it off – but keeping your mind active is presumably still important to you, so you might then set a new goal to make sure that keeps happening (maybe to do something for your new hobby every week, or add another activity as well…). Your goal has been achieved, but the underlying value remains important to you.

 

For people affected by Huntington’s, that distinction is crucial. People who carry the gene, and the people who love and care for them, will notice changes in what they’re able to do over time. For example, a person who loves to run marathons might one day not be able to. If they are carrying the gene expansion, this might be because they have experienced changes in their mobility which make it difficult. If they are supporting a person with Huntington’s, it might be because they don’t have the time and flexibility they may have had before. But once we think of this in terms of values, it becomes possible to explore why running a marathon felt important to that person. Was it because of the sense of physical exertion, or maybe because they enjoy raising money for charity? Once you’ve dug into that, you can then start to think with your therapist about new goals which might also meet that value, but which perhaps fit better into your current situation. In that way, you can start to build (or rebuild) a meaningful, rich and valued life.

 

Useful information and resources

If you feel as if ACT might be a good option for you, there are a couple of places where you can start looking for an ACT therapist. It’s important to say that I’m not recommending any sites that would benefit me – I don’t practice privately, and these are just resources which I hope you may find helpful.

 

  • The Association for Contextual Behavioral Science keeps a searchable list of self-identified ACT therapists (almost 5,000 worldwide; hundreds in the UK). You can use the ‘Edit Search Criteria’ button to limit your search to the UK, or search more widely if you’d consider a therapist who practices online. Just bear in mind that all therapists are self-listing as ACT practitioners, so it’s worth scoping out their reviews online if you can, and/or having a chat with them about their approach and experience before commencing therapy.
  • The UK-based Counselling Directory keeps a list of verified professional ACT therapists, again searchable by location.

 

During the webinar, interest was expressed in the evidence base for the application of ACT with people with Huntington’s disease. This is a developing area of research, based in part on good outcomes with ACT for people affected by neurological conditions like multiple sclerosis. Here are a couple of examples:

 

 

For those who might want to access information about ACT, here are some great starting points: