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MRC Prion Unit
From fundamental research to prevention and cure


The ability to communicate at some point in the prion disease process will cease. We actively encourage patients to participate in the decision making process for the future for as long as possible. This decision making process must be started early in order to ascertain what the patient would want to happen in their care. Examples of this would include discussions around artificial feeding and end of life issues. We also employ many strategies in helping the patient communicate after their expression of speech is damaged but they are still receptively aware.

People with prion disease experience communication difficulties for a variety of different reasons. Communication difficulties resulting from prion disease can include difficulty forming whole sentences and difficulty recalling words or phrases. Communication difficulties can be particularly frustrating in the early stages of prion disease and can lead to feelings of depression and isolation.  In order to prevent a depressed mood state that results from communication difficulties it is important to be aware of the adverse effects that communication difficulties can have on a patient’s mood and employ as many strategies as possible to promote current levels of ability. Communication difficulties related to prion disease can also result in comprehension difficulties.  Such comprehension difficulties should be assessed as early as possible in order to maintain an optimum level of care. 

Communication difficulties involvedecreased, delayed, or absent ability to receive, process, transmit, and use a system of symbols (Nanda). The nursing staff at the NPC is able to recognise the broad spectrum of causes for communication difficulties in prion disease and work closely with local health care professionals to employ a number of strategies to improve transmission of information.

MRC Prion News