Length: 88 pages
This handbook, written by Dr. Martha Nance and published by the Huntington’s Disease Society of America, is a comprehensive overview of the typical issues faced by caregivers of those at-risk for or with Juvenile Huntington’s disease (JHD). A total of eight chapters, the book goes through the progression of care for everything from before the diagnosis of a child to end-of-life care.
Chapters One and Two begin with a description of the process of diagnosis of a child with JHD, which is typically longer for children than adults due to variation in symptom presentation as well as ethical barriers to genetic testing in minors. The authors also provide advice and guidelines for caregivers to use as they begin assembling a team of health care professionals for their child’s care. Chapter Three is an overview of medical care, including what to expect with regards to the behavioral, cognitive, and movement components of the disease as it progresses. Chapter Four provides considerations for daily life of someone with JHD such as school, meals, transportation, and hygiene. Chapter 5 explains how the later stages of the disease will affect both the patient and caregiver(s) and provides a functional scale for assessing JHD using school attendance, academic/developmental performance, chores, activities of daily living, and living situation as metrics.
A major challenge for many JHD families is navigating and accessing the financial, legal, and social services needed in order to care for someone with JHD. Chapter 6 provides an introduction to these issues and information on relevant resources, including planning for disease progression, Supplementary Security Income (SSI), Medicaid, and disability. Chapter 7 proceeds with a discussion about the importance of caring for caregivers, including parents, professionals, and siblings. The final chapter offers hope on research efforts being made as well as a realistic explanation of the research pipeline.
This book offers guidance in all of the above topics as well as an extensive appendix of different resources for JHD families, including HDSA Centers of Excellence, legal resources, publications, and other HD organizations.
Available through the HDSA website here.