There's no proven cure for Creutzfeldt-Jakob disease (CJD), but clinical studies are under way at the National Prion Clinic to investigate possible treatments.
At present, treatment involves trying to keep the person as comfortable as possible and reducing symptoms with 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 like clonazepam and sodium valproate.
Any pain experienced can be relieved using powerful opiate-based painkillers.
Many people with CJD draw up an advance directive (also known as an advance decision).
An advance directive is where a person makes their treatment preferences known in advance in case they can't communicate their decisions later because they're too ill.
Issues that can be covered by an advance directive include:
- whether a person with CJD wants to be treated at home, in a hospice, or in a hospital once they reach the final stages of the condition
- what type of medicines they'd be willing to take in certain circumstances
- whether they'd be willing to have 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 lose lung function, whether they'd 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.
If a person is thought to have CJD, they're referred to the National Care Team for CJD at the National CJD Research and Surveillance Unit in Edinburgh, or the National Prion Clinic in London, 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 for diagnosis and to offer clinical and emotional support to patients and their families, and work alongside the local care team.
A local care team may include doctors and nurses, occupational therapists, dietitians, continence advisers and social workers.
For more information about 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)
- dystonia (muscle spasms and stiffness)
- blindness or vision loss
As CJD progresses, people with the condition will need significant nursing care and practical support.
As well as help with feeding, washing and mobility, some people may also need help peeing. A tube inserted into the bladder to drain urine (a catheter) is often 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 someone with CJD at home, depending on the severity and progression of their 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.