Huntington’s Disease – NHS Lothian

About Huntington’s Disease (HD)

Huntington’s disease (HD) is a complex neurological condition with symptoms that typically begin to develop between the ages of 30 and 50.

In around 5-10% of cases HD symptoms develop before the age of 20 – this is known as Juvenile Huntington’s disease.

HD is hereditary, meaning it impacts upon entire families over generations rather than on individuals alone. Each child of a person with HD has a 50% chance of inheriting the condition.

As HD progresses it can affect a person’s:

Movement (or motor skills): People with HD can suffer from repetitive involuntary movements resulting in mobility, balance and coordination problems as well as difficulties with speech and swallowing.

Thinking processes (or cognition): People with HD can develop a type of early onset dementia, which affects their ability to process information, make decisions, solve problems, plan and organise.

Mental health: People with HD can also experience a decline in mental health. Depression, anxiety, irritability, obsessive pre-occupations and apathy are amongst the most common mental health problems experienced. Psychosis may also occur.

Symptoms generally progress slowly over a long period time. Those impacted may experience gradual loss of independence and require increasing care and support. Most people with the condition will eventually require 24 hour care.

A well coordinated multi-disciplinary approach to the care and support of people living with Huntington’s disease is essential.

The National Care Framework for Huntington’s Disease

The Scottish Huntington’s Association has published a National Care Framework which outlines the care and support that HD families should be entitled to receive throughout the country.

The National Care Framework is funded and supported by the Scottish Government and backed by all parties in the Scottish Parliament. It was developed by a multi-disciplinary expert group and has been supported and endorsed by the National Advisory Committee for Neurological Conditions, NHS Boards, Health and Social Care Partnerships, professional bodies, HD family members, academics and national and international third sector partners.

The Framework seeks to ensure that the care and support provided to individuals and their families living with Huntington’s disease takes account of their specific health & social care needs throughout their experience.

The National Care Framework for HD can be viewed at care.hdscotland.org.