Huntington’s and Seating - What To Consider
Many people who have a Huntington’s go on to have depression; this is partly around the diagnosis but also the implications of the impact on the brain, which affects motivation, self esteem and the ability to undertake new tasks.
A rare hereditary disease marked by degeneration of the brain cells which affects movement, cognition and behaviour. In 3% of cases there appears to be no family history of the condition. Its prevalence is around 12 people per 100,000. Most people with this diagnosis develop symptoms between the ages of 35-55.
Signs and symptoms
These vary enormously between each individual and there is no typical pattern, some of the signs and symptoms are highlighted below:
These are often the first symptoms observed and noted and include:
- Lack of emotions and not recognising the needs of others.
- Altering periods of depression, aggression, elation and anti-social behaviour.
- Difficulty concentrating.
- Difficulty multi-tasking.
- Irritability and reluctancy to undertake tasks, as the brain is not functioning effectively
Initial symptoms usually present themselves in the form of uncontrollable movements in the face, such as jerks and flicks, as time progresses this will affect all four limbs and cause stumbles and falls.
As the disease progresses these movements become more uncontrollable, frequent and extreme.
In the advanced stages these uncontrolled ataxic movements can change to a more ridged presentation.
Clients with Huntington’s Disease, lose weight due to the amount of uncontrolled movements they make which combine with loss of appetite, due to poor muscle control in the mouth and throat which affects swallowing.
Communication becomes difficult as the muscles around the face, throat and voice box begin to be affected, and this can lead to less responsiveness and if not addressed withdrawn behaviour.
Sitting someone with Huntington’s disease needs to allow for adaptability as the condition changes and also needs to take account of the powerful ataxic movements and deteriorating cognition.
Due to the deteriorating nature of the conditions and the fact that the conditions affect each person in a unique way, there are no set rules about suitable seating. However the chair should enable the user to:
- Be comfortable.
- Be seated in a position that promotes good posture.
- Avoid the impact of their ataxic movements e.g. through appropriate padding.
- Reduce risk of any pressure damage
- Continue to allow them to carry out normal activities whilst in a seated position.
- Want to use the chair, by meeting their own aesthetic needs and by matching in with their décor.
It is vital to remember that different chairs may be required at different stages of the client’s condition and regular reviews are recommended.
Considerations when looking for a suitable chair:
- The height of the seat must allow the user to sit with their feet on the floor.
- Any form of harness or belt should be avoided, they should only be considered if the client becomes a danger to himself or herself. If considering a harness or belt we would recommend requesting a referral to the local social services department for them to undertake a Deprivation of Liberty assessment and provide a clear care plan of its use.
- The seat width needs to provide enough support to prevent a user slumping in the chair and be adaptable to enable it to be reduced if weight loss becomes a issue.
- The seat depth should be long enough to support the femur but not too long to cause pressure problems behind the knees.
- The arm rests should be at a suitable height to enable a resting position that does not push the shoulders upwards and far enough forward to support effective sit to stand transfers.
- The back should be high enough to support the upper limb and avoid pressure points.
- The material used should allow for ease of washing/wiping incase of continence problems.
- The front of the seat should be higher than the back so that when the person is sitting the knees are higher than the hips to prevent an individual from slipping out of the chair, even due to ataxic movements. This can be aided by choosing an adjustable seat angle to manage changing needs.
Below we have linked to some of the chairs in the Repose range that might be considered. Others in the range may be suitable, but this will depend on the clients conditions.