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Palliative care in Creutzfeldt-Jakob disease: looking back, thinking ahead
Kay De Vries1, Emily Cousins2, Karen Harrison Dening3,4
1Faculty Health & Life Sciences, De Montfort University, Leicester, UK kay.devries@dmu.ac.uk.
Insights
Creutzfeldt-Jakob disease (CJD) is a rare, fatal neurodegenerative disorder. Research emphasizes the need for improved nursing care and palliative services for CJD patients and families.
Area of Science:
- Neurodegenerative diseases
- Palliative care
- Infectious diseases
Background:
- Creutzfeldt-Jakob disease (CJD) is a rare, fatal, and transmissible neurodegenerative disorder characterized by rapidly progressive dementia.
- Diagnosis is challenging, and currently, only palliative care is available, highlighting the importance of early diagnosis for accessing end-of-life services.
- CJD management involves complex physical and psychosocial symptoms, family bereavement, and diverse care settings, necessitating palliative care expertise.
Purpose of the Study:
- To highlight the critical need for enhanced nursing care and supportive services for individuals and families affected by Creutzfeldt-Jakob disease.
- To underscore the importance of palliative care expertise in managing the complex symptoms of CJD.
- To advocate for renewed research interest in CJD, particularly concerning its nursing care and potential links to other conditions like COVID-19.
Main Methods:
- Literature review of existing publications on Creutzfeldt-Jakob disease.
- Analysis of the current landscape of medical and scientific research concerning CJD.
- Identification of gaps in the literature, specifically regarding nursing care and supportive services.
Main Results:
- Thousands of articles on CJD exist, predominantly in medical and scientific literature.
- Very few publications specifically address the nursing care of persons and families impacted by CJD.
- There is a significant gap in research and literature concerning the supportive and palliative management of CJD.
Conclusions:
- There is a pressing need for increased focus on the nursing care of individuals with Creutzfeldt-Jakob disease and their families.
- Supportive and palliative care services require renewed attention and research to adequately address the complexities of CJD.
- Emerging hypotheses regarding CJD's potential links to COVID-19 immune responses warrant further investigation.
Abstract:
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.
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