Corticobasal Degeneration (CBD): Care Staff Guide

Corticobasal degeneration, often shortened to CBD, is a rare, progressive brain condition that affects movement, speech, thinking and swallowing. It is also known as corticobasal syndrome. Because it begins in one limb and can resemble Parkinson's disease or a stroke, it is often misdiagnosed at first. People with the condition and their families need skilled, consistent and compassionate support. This guide, based on NHS information, explains what CBD is and how care staff can help. It links to our guides on progressive supranuclear palsy, dysphagia and choking risk and end of life care and advance care planning.

What is corticobasal degeneration?

The NHS describes it as a rare, progressive brain condition in which brain cells become damaged and die over time. The NHS explains that a protein called tau builds up and is not broken down properly, forming harmful clumps in brain cells. This affects the cortex and the basal ganglia, which are involved in movement and thinking. There are only weak genetic links, and the risk to relatives is low. It mostly affects adults aged 50 to 70.

Symptoms

The NHS says symptoms usually start in one limb and then spread, and that progression varies widely between people. They include:

• problems controlling a hand or limb, sometimes described as feeling useless or not belonging to the person
• stiffness, tremor, jerky movements and spasms
• balance and coordination problems
• slow, slurred or effortful speech
• memory and visual problems
• difficulty swallowing

Because an arm or hand may not work as expected, everyday tasks such as dressing, eating and using a phone can become very hard. Staff should avoid assuming that this is due to lack of effort.

Diagnosis

The NHS says there is no single test, and diagnosis is based on the pattern of symptoms after other causes, such as Parkinson's disease or a stroke, have been ruled out. Brain scans and tests of memory and language may be used, and a neurologist usually manages the diagnosis. Staff who support someone with an unexplained, one-sided movement problem should encourage a specialist referral.

Treatment and care

The NHS says there is no treatment that has been shown to stop the condition progressing, but many symptoms can be eased with team-based care:

• Medicines for stiffness, spasms, sleep, mood, pain and memory
• Physiotherapy for movement and balance
• Speech and language therapy for communication and swallowing
• Occupational therapy to help with daily living
• Palliative care and advance care planning

Outlook

The NHS notes that changes are usually slow. It states that the average life expectancy is about six to eight years from the start of symptoms, though this varies a great deal between individuals. Swallowing problems can lead to pneumonia, which the NHS says can be life-threatening. This is why swallowing assessments and following any recommendations are so important.

Practical support for care staff

• Support independence for as long as possible. Occupational therapists can suggest adapted cutlery, clothing and equipment.
• Take care with moving and handling. Stiffness, spasms and balance problems affect transfers, so follow the moving and handling plan.
• Follow swallowing advice. Make sure that food and drink textures and positioning follow the speech and language therapist's guidance, and know what to do if someone chokes.
• Allow time to communicate. Slow, slurred speech can be frustrating. Give time, ask yes or no questions where helpful and use communication aids.
• Reduce fall risk. Balance problems and a limb that does not respond increase the risk of falls.
• Plan ahead. The NHS says early planning with the GP and specialist helps with later decisions. Encourage conversations about preferences, advance care planning and lasting powers of attorney while the person can take part.
• Look after the family. Carers can feel isolated, so signpost carers' support and respite.

When to get help

Ask a GP or the specialist team to review any new swallowing problems, coughing during meals, chest infections, falls or sudden change. If someone is choking or has severe breathing difficulty, call 999. The NHS also notes that data about people with the condition is shared with a national rare disease registry, from which a person can opt out at any time.

Frequently asked questions

Is corticobasal degeneration the same as Parkinson's disease?

No. They share some symptoms, but they are different conditions. A specialist assessment is needed to tell them apart.

Is it hereditary?

The NHS says genetic links are weak and the risk to relatives is low.

Can it be cured?

No treatment has been shown to stop the progression, but the NHS says treatments can ease many symptoms.

Where can staff build their knowledge?

The health and social care learning available through Learnsignal CPD can help you support people with complex neurological conditions.

This article is general information for care staff, based on NHS information, and does not replace the advice of a person's own clinicians. If you are worried about someone's health right now, contact their GP, NHS 111 or, in an emergency, call 999.