Stages of HD

Publications for Download

The progression of Huntington’s disease (HD) can be divided into three stages, although some health care professionals divide it into five stages.  Below is a generalization of the stages of HD.  As HD affects everyone differently, including members of the same family, people will go through the stages at different times throughout the disease.  If you have any questions about the stages of HD, contact the HDSA National Helpline at (888) HDSA-506 or via e-mail at hdsainfo@hdsa.orgYou can also find your local HDSA social worker here.

Early Stage

In the early stages of HD, people see subtle changes in mood, movement, and cognition.  The person with HD may still be able to drive and hold down their job, but might require a little extra help throughout the process. 

Mid Stage

During this stage, people with HD will lose the ability to work, drive, and need help performing Activities of Daily Living.  This is the stage that people tend to apply for disability.  The movement disorder will lead to difficulties with balance, swallowing, and voluntary motor tasks.  Individuals will have increased difficulty organizing and prioritizing information.  The behavioral symptoms will affect everyone differently, but irritability, aggression, depression, and apathy at this stage can lead to personal and family issues, as well as involvement by Law Enforcement. 

Late Stage

In the late stage of Huntington’s disease, people require help in all Activities of Daily Living.  During this time, the person with HD may lose the ability to speak and respond, but is still able to comprehend what is happening around them.  Chorea can be severe or may be replaced by other movement symptoms, including rigidity, dystonia, and bradykinesia.  During this stage, many people enter into a Long Term Care facility, which can provide 24/7 care.

Publications for Download

Behavior

Behavioral and Sexual Problems in Huntington's Disease
Understanding Behavior in Huntington's Disease

Caregiving

A Caregiver's Handbook for Advanced-Stage Huntington's Disease
Huntington's Disease at Mid-Stage

Nursing Approaches for Clients with Huntington's Disease

Long Term Care: A Guide for Families

Nutrition and Swallowing

Coping with Speech and Swallowing Difficulties in Huntington's Disease
Managing Swallowing Difficulties Associated with HD

Nutrition and Huntington's Disease: A Guide for Families

Nutrition Intervention in Huntington's Disease

Occupational Therapy

Occupational Therapy in Huntington's Disease
Physical and Occupational Therapy for Huntington's Disease: A Guide for Families

Physical Therapy

Physiotherapy for Huntington's Disease Patients
A Physical Therapy Program for HD Patients