Caring for a person with Huntington’s Disease (HD) is many times not very different from caring for a person with Alzheimer’s or Parkinson’s disease. In fact, HD has often been described as having Parkinson’s, Alzheimer’s and ALS all in one disease. HD is progressive so your new resident will gradually become more impaired. But no matter how impaired the person may become, it is important to remember that the person is still able to hear and understand what you are saying; they do not lose their ability to understand. However, persons with HD will have slowed processing (click here for a short description on this condition) which means that though they understand what you are asking or saying, it takes them a few minutes for their brain to process what you are saying and to reply. So it is important for you to give the person with HD that extra time.
HDSA has resources and training materials for you and your staff to assist you in caring for your person with HD. HDSA also encourages you to contact the nearest HDSA social worker (click here for list) to set up an in-service for your staff. Please contact HDSA at 800-345-HDSA or email us at email@example.com.
HDSA also offers continuing education courses for your staff social worker, physical therapist, and occupational therapist. Social workers and occupational therapists can earn free CE units by taking one of HDSA’s courses while physical therapists can earn certificates of completion that can be used towards CE units. Click here for CE courses.
In Service Materials
HDSA In-Service for HD (recorded)
HDSA In Service for HD (Spanish recorded)
HDSA In Service for HD Spanish slide deck
HDSA In Service for HD slide deck
Caregiver Guide for Mid to Late Stage Huntington’s Disease for Long Term Care and In-home Care Agencies
A Physicians Guide to the Management of Huntington’s Disease (Third Edition)
Understanding Behavior in Huntington’s Disease
Family Guide to Nutrition and HD
Family Guide to Physical and Occupational Therapy and HD
Family Guide to Speech-Language and Swallowing Difficulties
Strategies for Managing Aggression
Swallow Function Impaired by HD
Denial and Unawareness in HD
When to Call a Speech-Language Pathologist