BSE - Treating Creutzfeldt-Jakob disease

There is no proven cure for any type of Creutzfeldt-Jakob disease (CJD), although clinical studies are under way at the National Prion Clinic to investigate possible treatments.

Instead, treatment involves trying to keep the person as comfortable as possible and reducing symptoms through the use of medicines.

For example, psychological symptoms of CJD (such as anxiety and depression) can be treated with sedatives and antidepressants and muscle jerks or tremors can be treated with medicines such as clonazepam and sodium valproate

Any pain experienced can be relieved using powerful, opiate-based painkillers

Advance directive

Many people with CJD draw up an advance directive (also known as an advance decision). This is where they make their treatment preferences known in advance, in case they can't communicate their decisions later because they are too ill.

Issues that can be covered by an advance directive include:

• whether they want to be treated at home, in a hospice or in a hospital once they reach the final stages of CJD
• what type of medications they would be willing to take in certain circumstances
• whether they would be willing to use a feeding tube if they were no longer able to swallow food and liquid
• whether they're willing to donate any of their organs for research after they die (the brains of people with CJD are particularly important for ongoing research)
• if they have respiratory failure (loss of lung function), whether they would be willing to be resuscitated by artificial means, for example by having a breathing tube inserted into their neck

Your care team can provide more advice about making an advance directive.

Specialist team

When somebody is diagnosed with CJD, they are referred to the National Care Team for CJD in the National CJD Research and Surveillance Unit, or the National Prion Clinic, for diagnosis and care.

A doctor and nurse from these services will be assigned to liaise with local services, including the person's GP, social worker, physiotherapist and occupational therapist.

Specialist teams are available to diagnose and offer clinical and emotional support to patients and their families, and to work alongside the local care team. A local care team may include doctors and nurses, occupational therapists, dietitians, incontinence advisers and social workers.

Treating symptoms of CJD

For more information on how some of the specific symptoms of CJD may be treated see:

• treating ataxia (loss of physical co-ordination)
• treating urinary incontinence (loss of bladder control)
• treating bowel incontinence (loss of bowel control)
• treating dysphagia (swallowing difficulties)
• treating dystonia (muscle spasms and stiffness)
• help and support for visual impairment

Care and support in the advanced stages of CJD

As the condition progresses, people with CJD will need significant nursing care and practical support.

As well as help with feeding, washing and mobility, some people may need help with urinating. Often, the use of a catheter (a tube that is inserted into the bladder and used to drain off urine) is required.

Many people will also have problems swallowing, so they may have to be given nutrition and fluids through a feeding tube.

It may be possible to treat people with CJD at home, but this will depend on the progression and severity of the condition.

Caring for someone with CJD can be distressing and difficult to cope with, so many carers prefer to use the specialist services of a hospital or hospice.

Read more about end of life issues, end of life care and your own emotional wellbeing if you are caring for someone else.