Blog Section

“Understanding Behavior in Huntington’s Disease: A Guide for Professionals” by Arik C. Johnson and Jane S. Paulsen

An update to the review of “Understanding Behavior in Huntington’s Disease” by Jane S. Paulsen (1999)

Published: 2014

Length: 66 pages

This book, written for health care professionals caring for those affected by Huntington’s Disease(HD), is an update on Paulsen’s first book “Understanding Behavior in Huntington’s Disease” published in 1999. A review on the earlier edition of this text can be found here. Since the first publication, much has been learned about the physiological and behavioral aspects of HD. One major research update is on individuals at-risk for, but not yet diagnosed with, HD. In the last 15 years, studies of this group of pre-diagnosis (also referred to as preclinical or prodromal) individuals have resulted in a better understanding of how early stages of the disease affect behavior. More information about the stages of HD can be found here.

Within this book the authors provide an overview of HD, including genetics, neurodegeneration, and the stages of HD — from those at-risk to post-diagnostic stages. In Chapter 3, the authors detail common behavioral issues of those with HD. Topics covered include: communication, learning and memory, perception, executive functions, depression, suicide, anxiety, psychosis, sexuality, and sleep disturbances. For each behavioral concern, the authors provide an explanation of how the behavior may be altered in those with HD as well as hypothetical examples of how this behavior may manifest in different patients. In addition, the authors provide common medical treatments as well as an extensive list of behavioral strategies for caregivers to consider implementing at home. The book also provides considerations for other factors that could influence behavior, such as underlying medical conditions, fatigue, or grief. The authors close with a general 7-step approach to working with HD-related behavioral problems.

Overall, this book serves as a good resource for physicians making recommendations to caregivers and patients, as well as for caregivers, who are typically the first to identify behavioral issues. In addition, the focus on behavioral interventions, as opposed to medications, makes this a more readily usable resource for caregivers.

This publication is available through the Huntington’s Disease Society of America’s website here.

CJE 6/30/2015