Hospitals and care homes

What applies to ordinary nursing care?

Standard precautions. Body secretions and body fluids including saliva, blood, cerebrospinal fluid and excreta are all classified as low risk for CJD in the UK guidance, so the majority of samples taken and procedures performed are low risk. Contact with small volumes of blood, including an inoculation injury, is considered low risk, while transfusion of large volumes is the route known to have transmitted variant CJD.

Blood and body fluid samples from patients with or at increased risk of CJD are handled with standard precautions as for any other patient: disposable gloves and eye protection where splashing may occur, avoidance of sharps injuries and other parenteral exposure, safe disposal of sharps and contaminated waste under local arrangements, and single-use disposable equipment wherever practicable. Samples should be marked to say that a sample is being sent.

The Australian support network puts the same point to clinicians more directly, describing CJD as a transmissible disease and not an infectious disease and stating that there is no need for any protective clothing in routine care. It also asks that classical CJD never be referred to as mad cow disease, and notes that being at risk of CJD does not mean the patient has CJD.

Which tissues and procedures change the picture?

High infectivity tissue. The CDC lists brain, spinal cord and eyes as high infectivity, and cerebrospinal fluid, kidneys, liver, lungs, lymph nodes, spleen and placenta as low infectivity. The Australian guidance lists brain, dura mater, pituitary gland, spinal cord and posterior eye as the high infectivity tissues that change instrument handling.

For invasive interventions involving medium or high risk tissue, UK guidance requires control measures to prevent iatrogenic transmission and states that only trained staff who are aware of the hazards should carry out such procedures. Instruments used on high or medium risk tissue in a definite or probable case are either incinerated or quarantined for exclusive re-use on the same patient, and instruments used on patients in whom the diagnosis is pending are quarantined until the diagnosis is settled. Where a procedure involved low risk tissue only, instruments are reprocessed according to best practice and returned to use. The CDC reproduces the WHO decontamination methods for heat-resistant instruments, which combine soaking in sodium hydroxide or sodium hypochlorite with autoclaving, and advises keeping instruments moist during surgery instead of letting them air dry.

Where someone at increased risk of CJD needs surgery, the Australian guidance asks staff to contact the infection control nurse or consultant immediately for advice.

Can someone be refused dental treatment, or admission?

UK guidance states that there is no reason why any patient with or at increased risk of CJD should be refused routine dental treatment, and that such people can be treated in the same way as any member of the general public. Dental instruments used on these patients can be handled in the same way as those used in any other low risk surgery and returned to use after reprocessing, with the standing rule that anything labelled single-use is never re-used.

Admission refusals are not addressed in the guidance text. The 2026 UK palliative care recommendations describe stigma in prion disease as linked to misconceptions carried over from the BSE epidemic, with inaccurate concerns about transmission creating unnecessary fear, and note that carers may feel isolated and may find themselves having to educate others. Where a care home or ward raises concerns, the infection control team and the national specialist services are the route to a written answer.

What does a care home or community team need to have in place?

Those caring for a patient at home should be advised of the standard infection prevention and control practices that would apply to any patient, and should be provided with disposable gloves, paper towels, waste bags and sharps containers as appropriate. Provision should be made with the local authority for removal and disposal of clinical waste and sharps from the home. No special measures beyond standard precautions are generally required for care in the community, because it is unlikely that procedures will be adopted that lead to contact with high or medium risk tissue.

Spillages in the community are assumed to be low risk material such as blood and urine. They should be cleared as quickly as possible, keeping contamination to a minimum, with disposable gloves and an apron worn, and the surface then washed thoroughly with detergent and warm water. Absorbent material is used for large volumes, and the guidance notes that proprietary absorbent granules, including those containing sodium dichloroisocyanurate, do not deactivate TSE agents. Waste including mop heads and used personal protective equipment is disposed of as normal clinical waste.

For bed linen the guidance notes that in the interests of general hygiene it may be preferable to wash fouled linen separately, and that a commercial laundry service can be used instead and can be of great help to carers where someone is incontinent. Pressure sores in late stage disease should be dressed regularly using standard precautions, with contaminated dressings disposed of as normal clinical waste. Pregnancy in a patient with or at increased risk of CJD needs no additional infection control precautions.

Who coordinates the care?

UK guidance describes a named professional with good knowledge of local health and social services who coordinates care in either a hospital or a community setting, identified as soon as possible after a diagnosis of CJD seems likely, providing continuing support, acting as the primary source of advice and information to the patient and family, and acting as an advocate for necessary resources. Guidance from the vCJD Clinical Governance Advisory Group is cited as recommending that general practitioners act as clinical guardian and anchor, supported by consultant neurologists and the specialist national centres.

Nursing attention at the end of life goes to skin and corneal integrity, mouth care, continence and upper airway secretions, with external or indwelling catheters considered if frequent nursing care becomes distressing. Anticipatory medicines are usually prescribed subcutaneously or intravenously because swallowing is often unsafe.

What financial help exists for care costs?

In the UK the CJD Support Network offers care grants of up to 500 pounds for care-related expenses where there is financial hardship due to CJD, with repeat grants not ordinarily given because funds are limited. Applications are usually accepted from pre-approved referral partners, named as clinicians from the National Prion Clinic, the CJD National Nursing Service in Edinburgh and the National CJD Diagnostic Advisory Service.

What applies after a death?

The UK guidance set includes a separate annex on care after death covering post-mortem examinations, transport of bodies and advice for undertakers on embalming, funerals and cremations, together with an information sheet for funeral directors, relatives and others following a CJD death. The CDC states that bodies of suspected or confirmed patients that were not autopsied or traumatised may be embalmed under standard precautions, and advises that where the patient was not autopsied there is no need to discourage family contact including touching or kissing the face.

The criteria that drive the risk classification used here are in diagnostic criteria, the reference laboratories are in testing labs by country, and the plain-language page for families is care settings. The section index is for clinicians.