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

Zarotti, Nicolò and Dale, Maria and Eccles, Fiona and Simpson, Jane (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). ISSN 2075-4426

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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.

Item Type:
Journal Article
Journal or Publication Title:
Journal of Personalized Medicine
Subjects:
ID Code:
165675
Deposited By:
Deposited On:
07 Feb 2022 16:30
Refereed?:
Yes
Published?:
Published
Last Modified:
04 May 2022 02:42