More than Just a Brain Disorder: A Five-Point Manifesto for Psychological Care for People with Huntington’s Disease

Zarotti, Nicolò; Dale, Maria; Eccles, Fiona J. R.; Simpson, Jane

doi:10.3390/jpm12010064

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More than Just a Brain Disorder: A Five-Point Manifesto for Psychological Care for People with Huntington’s Disease

¹

Division of Health Research, Faculty of Health and Medicine, Lancaster University, Lancaster LA1 4YG, UK

²

Mill Lodge Huntington’s Disease Inpatient and Community Service, Leicestershire Partnership NHS Trust, Leicester LE19 4SL, UK

^*

Author to whom correspondence should be addressed.

J. Pers. Med. 2022, 12(1), 64; https://doi.org/10.3390/jpm12010064

Submission received: 25 November 2021 / Revised: 4 January 2022 / Accepted: 5 January 2022 / Published: 7 January 2022

(This article belongs to the Special Issue The Many Faces of Huntington Disease)

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Abstract

Huntington’s disease (HD) is a rare and complex condition where affected individuals, family members, caregivers, and clinicians face a number of both long-term and fluctuating challenges. The predominant biomedical framework adopted in HD to date has traditionally viewed it as a brain disorder first and foremost. As a consequence, one of the most challenging aspects of the condition—psychological difficulties and their care—is often not given the emphasis it deserves in everyday clinical practice. Here, we propose a manifesto outlining five points to address the quality, effectiveness, availability, and accessibility of psychological care in HD. These include (1) Listening to People with HD, (2) Reformulating Difficulties Psychologically, (3) Exploring New Interventions, (4) Increasing Psychological Provision, and (5) Learning from Other Conditions. As the search for a cure continues, we hope that this manifesto will create a new impetus towards refining the current approach to psychological difficulties in HD and ultimately improve the quality of life of the tens of thousands of families affected by HD worldwide.

Keywords: Huntington’s disease; psychological care; clinical psychology; psychotherapy; mental health

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MDPI and ACS Style

Zarotti, N.; Dale, M.; Eccles, F.J.R.; Simpson, J. More than Just a Brain Disorder: A Five-Point Manifesto for Psychological Care for People with Huntington’s Disease. J. Pers. Med. 2022, 12, 64. https://doi.org/10.3390/jpm12010064

AMA Style

Zarotti N, Dale M, Eccles FJR, Simpson J. More than Just a Brain Disorder: A Five-Point Manifesto for Psychological Care for People with Huntington’s Disease. Journal of Personalized Medicine. 2022; 12(1):64. https://doi.org/10.3390/jpm12010064

Chicago/Turabian Style

Zarotti, Nicolò, Maria Dale, Fiona J. R. Eccles, and Jane Simpson. 2022. "More than Just a Brain Disorder: A Five-Point Manifesto for Psychological Care for People with Huntington’s Disease" Journal of Personalized Medicine 12, no. 1: 64. https://doi.org/10.3390/jpm12010064

APA Style

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 Personalized Medicine, 12(1), 64. https://doi.org/10.3390/jpm12010064

Note that from the first issue of 2016, this journal uses article numbers instead of page numbers. See further details here.

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More than Just a Brain Disorder: A Five-Point Manifesto for Psychological Care for People with Huntington’s Disease

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