When patients are admitted to hospital to undergo various tests and a diagnosis of CJD is suspected the family will need professional assistance in making decisions as to whether to care for the patient at home, in a nursing home or whether to patient is ready for hospice or palliative care.

Physical dependency with the presence of psychiatric symptoms makes care management difficult on either medical or psychiatric wards. Due to a presentation of nonspecific psychiatric symptoms, many patients are initially given a psychiatric diagnosis and admitted to a mental facility which often angers the relative as they are aware of other physical changes that are starting to occur.

Most acute wards are unable to give the level of care and attention needed so transfer to a more appropriate care setting should be planned as soon as possible, involving the family at all stages.

Prior to discharge referral should be made to physiotherapist, occupational therapist, speech therapist, social services and palliative care and if patient is to be cared for at home community care services that provide allied health, nursing and respite services, counselling services and home based palliative care support.

Caring for a patient at home takes a lot of dedication and is not something easily achieved by just one or two care givers. It usually takes a family using a roster system with increased community care involvement. The rapid deterioration and ever increasing care needs require frequent and ongoing reassessment.

Patients often wander at night or try to leave the premises so doors need to be kept locked. Some patients become very aggressive towards the care givers, constipation or urine retention can cause agitation and falls are a constant concern. A severe fall often seems to increase the rapidity of the disease. As the patient loses mobility additional equipment will be required and medication will need to be monitored with care and careful consideration given to when palliative care services are required.

The family also needs accurate information and time to make informed decisions about consenting to an autopsy and deciding if a blood sample should be stored for future DNA testing to rule out or establish a genetic cause if CJD is eventually confirmed as the diagnosis. Family members often have differing views about these decisions and although it is the next of kin who has the final say it is better that there is time to discuss options together instead of facing these decision at the last moment which can led to confusion and conflict over arrangements after death.