Arches. Photo by Daniel Chia
HOPES: Huntington's Outreach Project for Education, at Stanford
May
21
2013

“A Caregiver’s Handbook for Advanced-Stage Huntington’s Disease” by Jim Pollard

Published: 1999

Length: 69 pages

Summary: This handbook gives key information for families and nursing home staff that are taking care of patients with late-stage Huntington’s disease. It begins with a description of what HD looks like, particularly in late stages, and then focuses on important issues especially important for these patients. This includes communicating wants and needs, nutrition, difficulties swallowing, falling, cognitive changes, and other medical issues that are specific to advanced HD. The book takes on a caring, understanding tone and organizes the large quantity of information into lists, tables, and steps to follow. Short stories are included every few sections to demonstrate what actions to take in various situations. The end of the handbook contains contact information for organizations that lend support and sell assistive devices specific to Huntington’s disease.

CMB 05/21/2013