Creutzfeldt-Jakob Disease (CJD): A Care Staff Guide

Creutzfeldt-Jakob disease (CJD) is a rare, fatal brain condition that many care workers will never meet, which is exactly why it causes anxiety when it does arrive. Staff worry about catching it, families worry about what they are told, and teams worry about getting infection control wrong. This guide explains what CJD is, how it is and is not spread, and what good everyday care looks like. It sits alongside our guide to young-onset dementia, because CJD can look like a rapidly progressing dementia.

What CJD is

CJD is caused by prions, abnormally folded versions of a normal brain protein. NIDirect describes how a normal protein "misfolds" into a prion, which then damages the brain. Prions are unusually tough: they are resistant to heat, radiation, antibiotics and antiviral medicines, which is why infection control for CJD has some special features.

NIDirect describes four types:

• Sporadic CJD is the most common. It arises without a known cause, usually in adults aged between 45 and 75, and most often in the early 60s.
• Variant CJD (vCJD) is linked to eating meat from cattle with bovine spongiform encephalopathy (BSE). It has also been transmitted through blood transfusion, which NIDirect says happened four times in the UK.
• Familial CJD is inherited through a mutation in the prion protein gene, with symptoms typically starting in the early 50s.
• Iatrogenic CJD is passed on accidentally through medical or surgical treatment. It is now very rare because of synthetic growth hormones and improved cleaning of surgical instruments.

How common is it?

NIDirect says sporadic CJD affects one or two people in every million each year in the UK, and familial CJD about one in nine million. The National CJD Research and Surveillance Unit in Edinburgh reported an annual sporadic CJD mortality rate of 2.07 cases per million in 2023 in its 32nd annual report. By the end of 2023 it had identified 178 definite or probable cases of variant CJD in the UK since surveillance began.

Symptoms care staff may notice

NIDirect lists loss of intellect, memory and balance, personality changes, slurred speech, vision problems and abnormal jerking movements, followed by progressive loss of brain function and mobility. Because the decline is usually fast, families often describe the person changing week by week. Anyone showing rapid cognitive change should be escalated to their GP or specialist team promptly. Care staff do not diagnose CJD, and other treatable causes of sudden change, such as infection or delirium, must always be considered first.

Can staff catch CJD from a resident?

The infection prevention policy published by the Infection Prevention Control service for general practice (version 4.00, March 2026) is clear that isolation is not required, and that a person with CJD can be cared for at home or in a health and social care setting and can take part in normal activities. It states that there is no evidence of person-to-person transmission through close contact. A Leicestershire Partnership NHS Trust policy makes the same point: patients with suspected CJD are not an infection risk to other patients or staff and do not need source isolation. In practice, you can hug, wash, feed and sit with the person.

Everyday infection control

Standard infection control precautions apply to everyone. The policies we reviewed say to:

• wear disposable aprons and gloves when handling tissues or body fluids, and use facial protection if there is a splash risk;
• use single-use equipment where possible when it will come into contact with body fluids;
• decontaminate reusable equipment that touches only intact skin using normal detergent and water;
• report any sharps injury to occupational health or the emergency department so a consultant microbiologist can review it.

The tissues that carry the greatest risk in sporadic CJD are the brain, spinal cord, eye and cerebrospinal fluid, which is why surgical and invasive procedures need specialist advice rather than routine handling. Our guide to infection prevention and control in care homes covers the standard precautions that every team should already have in place.

Telling other services

The infection prevention policy asks staff to contact the local community infection prevention and control team or the UK Health Security Agency (UKHSA) before any clinical or surgical procedure. It also says to inform receiving providers, such as the ambulance service, a hospital or another social care provider, of the CJD status before any transfer, and to complete a patient passport or inter-agency transfer form. Funeral directors should be told of the infection status after death. This is information sharing for safety, not a reason to treat the person differently.

Care, comfort and the end of life

There is no cure. NIDirect says treatment focuses on relieving symptoms with antidepressants, painkillers and nursing care, and that most people die within a year, typically from infection linked to immobility. That makes the quality of nursing care central: skin care, positioning, nutrition and hydration, mouth care, and managing involuntary movements and distress. Early conversations about advance care planning matter because capacity is likely to be lost quickly; see our guide to end of life care and advance care planning. After death, one NHS policy says the body should be placed in a body bag before transfer to the mortuary and that embalming should be avoided in confirmed or suspected cases, so tell the mortuary and funeral director in advance.

Supporting the family and the team

Families may be frightened by the speed of the illness and by stories about "mad cow disease". Offer plain explanations, give them the name of a specialist contact, and tell them they can touch and sit with their relative. Staff may also be anxious, so offer a briefing from the infection prevention team and a chance to ask questions.

A note on local policy

The documents we drew on are NHS and infection prevention service policies, and they reference national guidance from the Advisory Committee on Dangerous Pathogens and UKHSA. Always follow your own organisation's current policy and take advice from your local infection prevention and control team, as arrangements for a particular person can vary.

Frequently asked questions

Can CJD be caught from sitting with or washing someone? The policies above say there is no evidence of spread through close contact, and standard precautions are enough.

Does the person need their own room? No. The infection prevention policy states that isolation is not required.

Where can staff learn more? Learnsignal offers CPD courses for health and care staff covering infection control and neurological conditions.