A Caregiver Guide for HD Families
The Caregiver Guide for HD Families includes discussion on the benefits of physical and occupational therapy and nutrition along the continuum of disease progression but also offers practical suggestions for unique home caregiving issues such as driving, the role of young adults as caregivers and managing JHD at home.
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Caregiver Guide for Mid to Late Stage Huntington’s Disease: For Long-Term Care Facilities and In-Home Care Agencies
2014, 116 pages. This guide will provide caregivers with the information and resources that they need to provide the best care to persons with HD — to work through the difficult symptoms to reach the person behind the disease, and to allow the person to function as well as possible each step of the way. The goal of care for the person with Huntington’s disease is to promote independence, freedom of choice, and ability to function within the confines of safety for the person, the family, and the care team.
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Understanding Behavior in Huntington’s Disease: A Guide for Professionals
Arik C. Johnson, Psy.D., Jane S. Paulsen, Ph.D., 2014, 66 pages. A must-read for anyone who deals extensively with an HD-affected individual, this book explains not only the behavior challenges created by HD, but their origin in the HD-affected brain. By understanding the basis of these behaviors, the authors are able to suggest effective ways of dealing with and preparing for them. The book also covers environmental, individual and health factors that contribute to behavior problems. Problem-solving tips and techniques are given for behaviors arising from communication difficulties, memory problems, cognitive break-down and emotional instability.
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A Physician’s Guide to the Management of Huntington’s Disease (3rd edition)
Martha A. Nance, MD, Jane S. Paulsen, PhD, Adam Rosenblatt, MD, Vicki Wheelock, MD, HDSA 2011. Includes in-depth information on principles of treatment, genetic testing, medications, management of cognitive and behavioral problems and a new section with case studies.
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Huntington’s Disease: A Family Guide
HDSA, 2016, 17-page booklet. This short booklet offers an overview of HD, including topics such as what HD is, inheritance of the HD gene, Juvenile Onset Huntington’s disease (JHD), clinical diagnosis, stages of HD, movement, cognitive and behavioral disorders as well as treatment options.
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