Progressive Supranuclear Palsy (PSP): A Care Staff Guide

Progressive supranuclear palsy (PSP) is a rare brain condition that is often mistaken for Parkinson's disease, depression or simply "getting older". It causes unexplained falls, problems with eye movement and swallowing, and changes in thinking and mood. Because it is uncommon, many care teams will meet only one or two people with it in a career, and the person and their family may have waited a long time for a diagnosis. This guide draws on the Progressive Supranuclear Palsy Association's professionals' guide (2024) to explain what staff should know. It sits alongside our guide to Parkinson's disease care.

What PSP is

The PSP Association describes PSP as a rare neurodegenerative disease and the most common parkinsonian disorder after Parkinson's disease. It involves progressive deterioration that affects eye movement control and causes muscle weakness. It is caused by the build-up of a protein called tau in certain areas of the brain, where it forms clumps known as neurofibrillary tangles that are believed to damage nerve cells.

How common is it?

The PSP Association states that 5 people per 100,000 in the UK have PSP. It typically starts between the ages of 60 and 65, although it can appear from around 40. The association also reports that approximately half of those affected are initially misdiagnosed with another neurodegenerative condition, which is one reason families often describe a long and frustrating route to an answer.

Outlook

According to the PSP Association, life expectancy is typically in the range of 5 to 7 years following the onset of symptoms, though individual health factors mean it can be shorter or longer. This makes early, unhurried conversations about care preferences important.

The main symptoms

• Movement and balance: unsteadiness, postural instability, backwards falls and progressive immobility.
• Eye movement: difficulty looking up and down, problems with focusing and double vision.
• Swallowing: the PSP Association says over 80% of people diagnosed will have difficulty swallowing at the moderate to severe stages of impairment.
• Thinking and mood: depression, apathy, difficulty making decisions and changes in behaviour.

A characteristic early feature is falling backwards, often without warning. Because people can also be slow to react and may lack insight into their risk, falls can happen even in someone who has been careful previously.

What this means for daily care

Falls and mobility. Falls are one of the biggest risks. Use a person-specific falls plan, keep floors clear, supervise transfers and walking, and make sure the physiotherapist has assessed equipment. Expect the plan to change as the condition progresses. Never assume that previous safe mobility remains safe.

Swallowing and mealtimes. Because difficulty swallowing is common and becomes more severe, watch for coughing, wet or gurgly voice, pocketing food, prolonged meals and weight loss. Refer promptly to speech and language therapy and follow the recommended textures and positioning; our guide to dysphagia and choking risk explains the basics.

Eyes and vision. Difficulty moving the eyes up and down can make eating, reading and walking hard. Place food and objects within the person's usable field of view, and avoid approaching from above or below.

Communication and decisions. Allow extra time, break information into small pieces, and avoid rushing. Apathy and slowed thinking can be mistaken for refusal or lack of interest. Document what the person can and cannot do so that the team treats symptoms as symptoms.

Mood. Depression and apathy are listed among the cognitive and behavioural changes. Report mood changes so they can be reviewed rather than assuming they are an inevitable part of the illness.

Planning ahead

Because the course is progressive, support early discussion of wishes about care, feeding, hospital admission and the end of life while the person can take part. Involve the family or carer, and involve specialists such as neurology, physiotherapy, occupational therapy, speech and language therapy and palliative care teams. The PSP Association provides professional and family resources that can help teams who have not met the condition before.

Mood, apathy and emotional wellbeing

The PSP Association describes depression and apathy as part of the picture for many people with PSP. Apathy can look like laziness or refusal, but it is better understood as a symptom of the condition. Staff who read it as unwillingness may withdraw encouragement, and the person can lose opportunities to take part in what they still enjoy. Offer short, structured activities, build in familiar routines, and give the person plenty of time to respond. Report any persistent low mood to the GP or specialist team so it can be assessed rather than assumed to be inevitable.

Slowed thinking and slowed speech can also make people seem less engaged than they are. Ask one question at a time, allow a long pause for the answer, and avoid finishing sentences unless the person wants you to. Record what works for each individual in the care plan so every member of the team uses the same approach, including agency and night staff.

Working with the wider team

Good PSP care is rarely delivered by one profession. Physiotherapy, occupational therapy, speech and language therapy, dietetics and the neurology or palliative care team may all contribute, and the care home or service is often the place where their advice is joined together. Make sure recommendations are written into the care plan in plain language, review them after any fall, chest infection or change in swallowing, and keep a single named person responsible for coordinating contact with specialists and family.

Supporting families and carers

Families may be coping with misdiagnosis, rapid change and exhaustion. Offer clear information, a named contact, and signposting to the PSP Association. Recognise that carers need breaks and emotional support.

Frequently asked questions

Is PSP the same as Parkinson's disease? No. According to the PSP Association it is a separate condition, though it is the most common parkinsonian disorder after Parkinson's, and it is often misdiagnosed initially.

Why do people with PSP fall backwards? The association lists backwards falls and postural instability as primary symptoms.

Where can staff train? Learnsignal's CPD courses for health and care staff include neurological conditions.