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Palliative care in Creutzfeldt-Jakob disease: looking back, thinking ahead
  1. Kay De Vries1,
  2. Emily Cousins1 and
  3. Karen Harrison Dening2,3
  1. 1 Faculty Health & Life Sciences, De Montfort University, Leicester, UK
  2. 2 Research & Publications, Dementia UK, London, UK
  3. 3 De Montfort University, Leicester, UK
  1. Correspondence to Professor Kay De Vries, Faculty Health & Life Sciences, De Montfort University, Leicester LE1 9BH, UK; kay.devries{at}


Creutzfeldt-Jakob disease (CJD) is a rare and fatal neurodegenerative disease for which there is no cure. However, it is difficult to diagnose and is unique in that it is both a genetic and transmissible disease. The disease is characterised by symptoms of a rapidly progressive dementia. Palliation is the only treatment and early diagnosis is an important aspect in relation to gaining speedy access to palliative and end-of-life care services. People with CJD may be cared for in a diversity of settings including; general hospital wards, neurological units, hospices; care homes and in their own home. Management of physical and psychosocial symptoms and dealing with family bereavement is complex and challenging. Due to the complexity of the physical symptoms input from clinicians with palliative care expertise is an important consideration. Given transmission risk and the latent incidence of infection in the general population, following the emergence of variant CJD; plus the recent hypothesis of a potential relationship between immune responses to COVID-19 and the acceleration of preclinical or evident neurodegenerative disease, there is a need for renewed interest in research in this field. Over the past 20 years, many thousands of articles have been published on CJD. These have been predominately in the medical and science literature and very few publications have addressed the nursing care of persons and families dealing with CJD. There is a need for renewed interest in the management of the disease by supportive and palliative care services.

  • neurological conditions
  • symptoms and symptom management
  • clinical assessment

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  • Contributors The submission was conceptualised by the first author. All authors contributed to the literature review.The first draft was developed by the first author. All authors worked on iterations of the submission.

  • Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.

  • Competing interests None declared.

  • Provenance and peer review Not commissioned; externally peer reviewed.