Long-term care (LTC) is a term used to describe medical and non-medical care that is provided over an extended period of time to people who have a chronic illness or disability. Individuals with Huntington’s disease often need LTC as the disease progresses.
Why & When Long-Term Care May Be Needed
Huntington’s disease is a hereditary brain disorder which leads to a wide range of physical and mental disabilities that increase over time. In the early stages of the disease, living independently with assistance from family and friends may be sufficient to meet the needs of the individual.
However, as the disease progresses and symptoms increase, a person with Huntington’s disease will need more and more assistance with the activities of daily living. This is when long-term care services may be indicated. The goal of long-term care services is to help maximize functioning and quality of life when the affected individual is no longer able to live independently.
There is no way to predict exactly when long-term care services will be needed. Initial symptoms usually appear between the ages of 30 and 50, but the disease may strike those as young as two or as old as 80, and the progression of symptoms is different for each individual with HD. Over time, symptoms typically include declines in physical functions such as eating, swallowing and walking, reduced cognition that affects the ability to learn and reason, and emotional.
HDSA Family Guide Series: Long Term Care Huntington’s Disease
HDSA, 2009, 24-page booklet. This guide is designed to help families facing the challenge of HD learn more about long-term care and to understand what may be involved in arranging this care for a loved one.