Huntington’s disease can have significant impacts on mental wellbeing for everybody in affected families. While the physical and cognitive impacts of Huntington’s for people who carry the gene expansion are perhaps more well recognised, those who have Huntington’s or support somebody with the condition will also be well aware of its emotional impacts throughout families.
The physical changes linked to Huntington’s commonly begin at 35-45 years of age, but difficulties with mental wellbeing may develop as much as 15 years earlier. These struggles often profoundly affect people who carry the gene expansion that causes Huntington’s, and they also affect family members, impacting on relationships and mental health for everyone. Psychological wellbeing difficulties are painfully common, with many people in Huntington’s families experiencing understandable low mood, anxiety, grief, anger and irritability.
This will not be news for members of Huntington’s families, who are often very aware of these challenges already. However, there is little research into these difficulties, which means they are not always well understood by healthcare workers and researchers. There is also very limited support available which recognises the complexities that come with Huntington’s, in terms of mental health and overall wellbeing.
A new Wellcome funded project “Advancing Support and Care for Emotional Needs and Distress in Huntington’s Disease” (ASCEND-HD) aims to change this. Dr Sarah Gunn (a Lecturer in Clinical Psychology at the University of Leicester, UK, and a clinical psychologist) has been working with people affected by Huntington’s disease for around 13 years.
Sarah’s work focuses on improving understanding and support for people who are affected by Huntington’s, through a wide range of research projects in collaboration with colleagues internationally.
She has developed therapeutic interventions tailored for people affected by Huntington’s, which are freely accessible in the UK through a collaboration with the Huntington’s Disease Association of England and Wales, and which are showing positive outcomes for people who carry the gene expansion and for their caregivers.
Sarah’s Career Development Award of £1.96 million provides funding for her team to focus on three important priorities over the next eight years:
This is the first time, to our knowledge, that a grant of this size has been awarded to investigate mental wellbeing in Huntington’s families and to develop new resources to support families and healthcare workers in managing these sorts of difficulties. It provides a real opportunity to change the way that we understand mental health for people coping with this challenging condition, and to develop meaningful ways forward to improve routes to mental wellbeing in future. This award from Wellcome demonstrates that they also recognise the importance of addressing psychological wellbeing in Huntington’s, a topic which has not always been given the attention it deserves. As the project progresses, Sarah intends to share findings with the European Huntington’s Association and other collaborators internationally, ensuring that findings and resources can be taken and used for the benefit of the Huntington’s community worldwide.
