The Psychosocial Impact of HD on Patients and Caregivers

Opinion
Video

Daniel Claassen, MD, MS, emphasizes the utilization of social workers to reduce the psychosocial burden of HD on both the patient and their family.

This is a video synopsis/summary of a discussion involving Daniel Claassen, MD, MS.

Over the last decade, the evolving landscape of treating Huntington's disease (HD) has highlighted a profound psychosocial burden endured by both patients and their families. Contemporary clinics are adapting their focus, transitioning beyond merely addressing immediate symptoms to providing comprehensive care that encompasses the entire family unit. The caregiving role, which carries a weighty burden, necessitates a collaborative approach involving psychological counseling and support. In navigating the challenges of caring for a loved one with HD, caregivers often benefit from the assistance of dedicated social work teams, a standard feature in recognized centers of excellence.

Family-based care models confront a sensitive issue – the testing of children for Huntington's disease. Due to the lack of treatments altering disease progression in children, testing is avoided. Instead, counseling takes precedence, especially when children exhibit symptoms, aiming to help them cope with a parent's condition. Notably, instances arise where children find themselves in the unexpected role of caregivers, prompting collaboration with social work and expanded therapy teams to navigate the intricacies of the disease's impact on family dynamics.

Beyond addressing the psychological aspects, the management of symptoms related to HD necessitates a multidisciplinary approach. Speech therapy proves invaluable in addressing challenges such as difficulty swallowing and communication issues, employing techniques like swallow studies, dietary modifications, and nutritional support. Physical therapy plays a central role in managing gate instability and falls, focusing on core strength and balance to mitigate fall risks. Occupational therapy addresses the daily activities that become cumbersome, from drinking water to grooming.

The comprehensive approach at Vanderbilt is exemplified by its large multidisciplinary clinic, incorporating diverse specialties and expertise to deliver holistic therapy. Recognizing the extensive impact of HD on both the individual and their familial support network, this model underscores the importance of a collaborative and holistic approach to care. By integrating various disciplines, the clinic aims to provide not just symptom relief but a comprehensive and supportive framework for individuals and families affected by Huntington's disease.

Video synopsis in AI-generated and reviewed by NeurologyLive editorial staff.

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