Aims

The aim is to promote a psychological understanding of the lived experience of people affected by the Huntington’s disease gene and to develop and assess psychological interventions to improve psychological well-being.

Main goal
To conduct, promote and share quality research that increases our understanding of Huntington’s disease from a psychological perspective and to develop and test interventions to improve well-being and reduce distress.

Aims of the working group

  • To review the literature on existing interventions in HD and related disorders
  • To develop an evidence-base for psychological interventions for people affected by Huntington’s disease
  • To develop psychological guidance for family members, researchers and professionals.
  • To develop training materials for professionals to understand the value of psychological approaches to Huntington’s disease.

Projects

Ongoing projects:

  • A pilot RCT of mindfulness-based cognitive therapy for pre-motor symptomatic gene expansion carriers.
  • Development of a psychological treatment for anxiety among people affected by Huntington’s disease.
  • Minds & Movement – developing clinical guidance for a psychological approach to motor neurodegenerative disorders (section on HD), funded by British Psychological Society.
  • Literature review on psychological interventions used with HD and related disorders.
  • Mental health across Huntington’s disease populations. What is unique and what is familial? (data mining, NIHR funded)
  • Psychological resilience factors among an HD population
  • Adjustment to testing positive for Huntington’s disease – a qualitative study

Recent publications and conference abstracts:

Simpson J., Dale M., Theed R., Gunn S., Zarotti N., Eccles F. (2019). Validity of irritability in Huntington’s disease: A scoping review, Cortex, vol. 120, pp. 353-374

Zarotti, N., Simpson, J., Fletcher, I., Squitieri, F., & Migliore, S. (2019). Exploring emotional regulation and emotion recognition in people with presymptomatic Huntington’s disease: the role of emotional awareness. Neuropsychologia, 112, 1-9.

Theed, R., Eccles, F. J. R., & Simpson, J. (2018). Understandings of psychological difficulties in people with the Huntington’s disease gene mutation and their expectations of psychological therapy. Psychology and Psychotherapy: Theory, Research and Practice, 91(2), 216-231. https://doi.org/10.1111/papt.12157

Previous publications:
Maltby J., Dale M., Underwood M., Simpson J., and the REGISTRY investigators of the European Huntington’s Disease Network (2017). Irritability in Huntington’s Disease: Factor Analysis of Snaith’s Irritability Scale. Movement Disorders Clinical Practice.4: 342-348

Underwood M., Bonas. S, Dale M.,and the REGISTRY investigators of the European Huntington’s Disease Network (2017) Huntington’s disease: Prevalence and psychological indicators of pain. Movement Disorders Clinical Practice.4:198-204.

Maltby J., Dale M., Underwood M., Callaghan J., Rickards H., and the REGISTRY investigators of the European Huntington’s Disease Network. (2016) Exploring the structural relationship between interviewer and self-rated affective symptoms in Huntington’s disease. Journal of Neuropsychiatry and Clinical Neurosciences. 3:
236-238

Dale M., Maltby J.,Shimozaki S., Cramp R., Rickards H. (2016) Disease stage, but not sex, predicts depression and psychological distress in Huntington’s disease: A European population study. Journal of Psychosomatic Research, 80: 17-22.

Dale M., and van Duijn E. (2015) Anxiety in Huntington’s disease. Journal of Neuropsychiatry and Clinical Neurosciences.27: 262-71

Contact

Jane Simpson
j.simpson2@lancaster.ac.uk

Maria Dale
Maria.Dale@leicspart.nhs.uk