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

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.

Guided self-help for anxiety among Huntington’s disease gene expansion carriers (GUIDE-HD) compared to treatment as usual: a randomised controlled feasibility trial

“…Moreover, while we would argue that the provision of psychological interventions for people with HD is important from a health inequality perspective (see [41,42]), we also accept the limitations of individually-focused interventions. Improving psychological well-being, including reducing anxiety, for this group also involves a more radical approach to conceptualising psychological distress from all perspectives -individual and societal [43].…”

Using a Clinical Formulation to Understand Psychological Distress in People Affected by Huntington’s Disease: A Descriptive, Evidence-Based Model

“…The voice of pwHD is essential in HD research [ 20 ] and it has been recommended that formulations should be explored with client focus groups to identify how they feel about clinical formulations [ 117 ]. Therefore, gaining a perspective from HD families on the usefulness of the model and whether they consider their care has improved as a result of the formulation would be beneficial.…”

“…These may include aggression, screaming, repetitive actions or phrases, destructive or dangerous behaviours, removing clothes in public or other disinhibited behaviours [ 19 ]. While these are traditionally viewed as a function of neurological changes in pwHD, more psychologically informed frameworks have begun to conceptualise how psychological distress, unmet needs and social context may coalesce with cognitive and organic changes to lead to expressions of distress through behaviour [ 20 , 21 ].…”

The Potential Values of Riyadhoh Improving the Quality of Learning of Students

“…Islamic education can be understood as educational activities, elements, and components of the education system that are built to achieve maximum results and in accordance with the objectives and formulations of the implementation of education. Because the purpose of Islamic education will always develop dynamically according to the situation and conditions between students and the times (Marterre et al, 2022;Zarotti et al, 2022).…”