Progressive supranuclear palsy 

Introduction 

Information on caring

If you or someone you know develops progressive supranuclear palsy then you may need more information about caring for people with a long-term condition.

The Carers Direct section on this website provides a wide range of useful advice on all aspects of caring for others as well as advice for carers themselves.

Progressive supranuclear palsy (PSP) is a rare and progressive condition in which increasing numbers of brain cells become damaged over time. This is known as neurodegeneration.

The causes of PSP are unknown, although current research suggests that it is caused by a combination of environmental and genetic factors. Most cases of PSP first develop in people who are 60-65 years of age, although the condition has been diagnosed in people as young as 40.

What are the symptoms of PSP?

As PSP is a progressive condition, the initial symptoms will become more severe over time, and new symptoms can develop. The rate at which the symptoms of PSP progress can vary widely from person to person but early symptoms can include:

  • progressive problems with balance and mobility
  • changes in behaviour, such as irritability or apathy (lack of interest)
  • an inability to control eye and eyelid movement, including focusing on specific objects or looking down at something (dystonia)

Later symptoms can include:

  • increasing difficulties with speaking and swallowing (dysphagia)
  • changes in thought, such as becoming increasingly forgetful or having difficulty concentrating

Although PSP itself is not life-threatening, it can lead to serious complications. One of the common complications of PSP is difficulty swallowing (dysphagia), leading to choking or inhaling food or liquid into the airways (aspiration). Aspiration can develop into pneumonia.

Problems with mobility can also make someone with PSP vulnerable to falls, which can lead to head injuries and fractures in severe cases.

Good care and assistance can help people with PSP to have better quality of life and more independence.

How common is PSP?

It used to be thought that PSP was a very rare condition, but research has found that, while PSP is rare, it is much more widespread than previously thought. A recent study estimated that five new cases of PSP are diagnosed each year in every 100,000 people who are over 50 years of age.

However, this figure may be higher because many cases may have been misdiagnosed. PSP is often misdiagnosed as Parkinson’s disease, which shares some of the same symptoms. Read more about diagnosing PSP.

The PSP Association says that the true figure for those with PSP may be much higher, and that more than 10,000 people are currently living with the condition in the UK.

Treating PSP

Although research into PSP continues, there is currently no cure for the condition. Treatment focuses on relieving symptoms while trying to ensure that someone with PSP has the best possible quality of life.

Treatment for PSP is provided by a team of health and social care professionals working together, as a person may be affected in many different ways. Specific symptoms of PSP might be treated with:

  • medication - to improve balance, stiffness and other symptoms
  • botulinum injections or special glasses - to help with eye problems
  • feeding tubes - to help manage dysphagia and avoid malnutrition or dehydration

Last reviewed: 12/12/2011

Next review due: 12/12/2013

Ratings

How helpful is this page?

Average rating

Based on 71 ratings

All ratings

Add your rating

NSF for long-term conditions

Read about the 10-year plan to raise standards of treatment and care for people with long-term neurological conditions.