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 collate, distribute and evaluate evidence on new psychological interventions for people affected by HD and related disorders.
- To carry out research to increase the evidence base on the efficacy of psychological interventions.
- To collate and conduct research promoting a psychological understanding of the issues affecting people affected by HD.
- 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.
- To provide a supportive and facilitative resource for all those interested in advancing psychological research to improve the lives of people affected by HD.
Projects
Completed projects:
We have recently completed a number of projects relevant to the group’s overall aim.
- Our initial study on whether mindfulness could help people with low mood has now been completed and two publications (Eccles et al., 2020 and Eccles et al., 2021 – see Recent Publications below) have resulted. We found that participants considered the intervention acceptable and reported benefits. Difficulties were also reported, however, with recruitment, study measures and effectively measuring change.
- Our major project, funded by the British Psychological Society, on reviewing the evidence on psychological therapies for people affected by Huntingdon’s disease is free to download from here. A fuller version is also available here. The study highlighted the lack of research conducted to date and hence the difficulty in making clear recommendations.
- Development of a guided self help treatment for anxiety among people affected by Huntington’s disease. This project was funded by the Gossweiler Foundation (PI: Maria Dale), has completed recruitment and data have been analysed. Publications will be available here shortly.
- Understanding the experiences of people at risk of HD but who have chosen not to have the predictive test. A study has been completed and published. The link is here:https://pubmed.ncbi.nlm.nih.gov/39252438/
- Reviewing the experiences of young people growing up ‘at risk’. This has been completed and the link is here: pubmed.ncbi.nlm.nih.gov/38469914/
- Understanding the experience of ‘irritability’ from the perspective of people diagnosed with HD. A study has been completed and published. The link is here: tandfonline.com/doi/full/10.1080/08870446.2025.2474010
- Understanding the value of psychological formulation in working psychologically with people affected by HD. A paper has been published and is available here: pubmed.ncbi.nlm.nih.gov/35893316/
Ongoing projects:
- Mapping the provision/availability of mental health/psychological support internationally. Work has just started on this so please get in touch if you would like to be involved.
- Understanding the partners’ of people affected by Huntington’s experience of confirmation of gene positive status
- Analysing the parenting narratives of non-affected partners of individuals with HD
Recent publications and conference abstracts:
- Cooper H, Simpson J, Dale M, Eccles FJR. Experiences of young people growing up in a family with Huntington’s disease: A meta-ethnography of qualitative research. J Genet Couns. 2025 Feb;34(1):e1886. doi: 10.1002/jgc4.1886.
- Cooper H, Simpson J, Dale M, Eccles FJR. Maintaining psychological well-being when living at risk of Huntington’s disease: An interpretative phenomenological analysis. J Genet Couns. 2025 Apr;34(2):e1965. doi: 10.1002/jgc4.1965.
- Dale M, Wood A, Zarotti N, Eccles F, Gunn S, Kiani R, Mobley A, Robertson N, Simpson J. Using a Clinical Formulation to Understand Psychological Distress in People Affected by Huntington’s Disease: A Descriptive, Evidence-Based Model. J Pers Med. 2022 Jul 27;12(8):1222. doi: 10.3390/jpm12081222.
- Wieringa, G., Dale, M., & Eccles, F. J. R. (2022). The experience of a sample of individuals in the United Kingdom living in the pre-manifest stage of Huntington’s disease: An interpretative phenomenological analysis. Journal of Genetic Counseling, 31, 375– 387. https://doi.org/10.1002/jgc4.1497
- Zarotti, N. Dale, M., Eccles, F.J.R. & Simpson, J. (2022). More than just a brain disorder: a five-point manifesto for psychological care for people with Huntington’s disease. Journal of Personalised Medicine, 12(1), 64.
- Ovaska-Stafford, N., Maltby, J., & Dale, M. (2021). Literature review: psychological resilience factors in people with neurodegenerative diseases. Archives of Clinical Neuropsychology, 36(2), 283-306.
- Anestis, E., Eccles, F. J.R., Fletcher, I., & Simpson, J. (2021). Neurologists’ current practice and perspectives on communicating the diagnosis of a motor neurodegenerative condition: a UK survey. BMC Neurology, 21, 1-9.
- Eccles, F.J.R., Craufurd,D., Smith,, A., … Simpson,J. (2021). Experiences of mindfulness-based cognitive therapy for premanifest Huntington’s disease. Journal of Huntington’s Disease. 10.3233/JHD-210471
- Simpson, J., Eccles, F.J.R., & Zarotti, N. (2021). Psychological interventions for people with Huntington’s disease, motor neuron disease, Parkinson’s disease and multiple sclerosis: evidence-based guidance. Leicester: BPS.
- Gunn, S., Maltby, J., & Dale, M. (2020). Assessing Mental Health Difficulties of Persons With Huntington’s Disease: Does Informant Presence Make a Difference? The Journal of Neuropsychiatry and Clinical Neurosciences, 32(3), 244-251.
- Zarotti, N., Eccles, F.J.R., … Simpson, J. (2020). Psychological interventions for people with Huntington’s disease: a call to arms. Journal of Huntington’s Disease, 9, 231-243.
- Eccles, F.J.R., Craufurd, D., Smith, A…. Simpson, J. et al. (2020). A feasibility investigation of mindfulness-based cognitive therapy for people with Huntington’s disease. Pilot and Feasibility Studies, 6, 90. https://doi.org/10.1186/s40814-020-00631-z
- Anestis, E., Eccles, F.J.R., Fletcher, I., French, M., & Simpson, J. (2020). Giving and receiving a diagnosis of a progressive neurological condition: A scoping review of doctors’ and patients’ perspectives. Patient Education and Counselling, 103, 1709-1723.
- 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.
- Zarotti, N., Simpson, J., & Fletcher, I. (2019). “I have a feeling I can’t speak to anybody”: A thematic analysis of communication perspectives in people with Huntington’s disease. Chronic Illness, 15, 61-73. https://doi.org/10.1177/1742395317733793
- Zarotti, N., Fletcher, I., & Simpson, J. (2019). New perspectives on emotional processing in people with symptomatic Huntington’s disease: impaired emotion regulation and recognition of emotional body language. Archives of Clinical Neuropsychology, 34, 610-624.
- 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
- Regan, L., Preston, N. J., Eccles, F. J. R., & Simpson, J. (2018). The views of adults with Huntington’s disease on assisted dying: A qualitative exploration. Palliative Medicine, 32(4), 708–715. https://doi.org/10.1177/0269216317741850
- Maltby, J., Dale, M., Underwood, M., & Simpson, J. (2017). Irritability in Huntington’s Disease: Factor Analysis of Snaith’s Irritability Scale. Movement Disorders Clinical Practice, 4(3), 342–348. https://doi.org/10.1002/mdc3.12424
- Regan, L., Preston, N. J., Eccles, F. J. R., & Simpson, J. (2017). The views of adults with neurodegenerative diseases on end-of-life care: a metasynthesis. Aging & Mental Health, 1–9. https://doi.org/10.1080/13607863.2017.1396578
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
Maria Dale
Associated EHDN Language Area Coordinator:
, EHDN Lanco, U.K.
last update 4 September 2025
