Journal Article

DZNE-2026-00770

http://join2-wiki.gsi.de/foswiki/pub/Main/Artwork/join2_logo100x88.png Multidisciplinary recommendations for palliative and supportive care in Creutzfeldt-Jakob disease and related disorders.

Ng, M. ; Grundy, A. ; Appleby, B. ; Awe, T. ; Carey, M. ; Chan, E. ; Chin, C. ; Diver, R. ; Hermann, P. ; Kovacevich, A. ; Kupeli, N. ; Marasigan, A. R. ; Marsh, B. ; Martin, J. ; Matsuzono, K. ; McDermott, E. A. ; McNiven, K. ; Miller, M. ; Pauli, L. ; Quibell, R. ; Ritchie, D. ; Ruck Keene, A. ; Sampson, E. L. ; Turner, G. ; Williams, R. ; Yamada, M. ; Zerr, I.DZNE* ; Bajorek, T. ; Doughty Herrera-Carrasco, K. ; Kennard, J. ; O'Donnell, V. ; Knight, R. ; Collinge, J. ; Mead, S. ; Bradley, V.

2026
Oxford Univ. Press Oxford

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Please use a persistent id in citations: doi:10.1093/ageing/afag206

Abstract: Prion diseases, of which Creutzfeldt-Jakob disease is the most common, are fatal neurodegenerative disorders and are often rapidly progressive. They are associated with a significant palliative care burden for patients and families, ranging from prognostic uncertainty to complex symptom management to caregiver distress. Healthcare professionals face unique pressures when caring for these patients, which can include a lack of familiarity with this rare diagnosis and rapidly evolving symptom needs due to accelerated clinical deterioration. We convened a multidisciplinary panel of experts from around the UK, including palliative care doctors, general practitioners, physician and nurse specialists in prion diseases, and a lived experience representative to compile practical, consensus-based recommendations for managing prion diseases, much of which can also be applied to other rapidly progressive dementias. In this article, we examine the available evidence base for managing various aspects of prion diseases. Where evidence is limited, we suggest best practices informed by decades of our collective experiences.

Keyword(s): Humans (MeSH) ; Creutzfeldt-Jakob Syndrome: therapy (MeSH) ; Creutzfeldt-Jakob Syndrome: diagnosis (MeSH) ; Creutzfeldt-Jakob Syndrome: psychology (MeSH) ; Creutzfeldt-Jakob Syndrome: physiopathology (MeSH) ; Palliative Care: standards (MeSH) ; Palliative Care: methods (MeSH) ; Patient Care Team: standards (MeSH) ; Consensus (MeSH) ; Disease Progression (MeSH) ; Interdisciplinary Communication (MeSH) ; Creutzfeldt-Jakob disease ; older people ; prion disease ; rapidly progressive dementia

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Contributing Institute(s):

1. Translational Studies and Biomarker (AG Zerr)

Research Program(s):

1. 353 - Clinical and Health Care Research (POF4-353) (POF4-353)

Appears in the scientific report 2026

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Database coverage:
; BIOSIS Previews ; Biological Abstracts ; Clarivate Analytics Master Journal List ; Current Contents - Clinical Medicine ; Ebsco Academic Search ; Essential Science Indicators ; IF >= 5 ; JCR ; Nationallizenz ; PubMed Central ; SCOPUS ; Science Citation Index Expanded ; Web of Science Core Collection

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