The Generative Brain

Ng M et al. Multidisciplinary recommendations for palliative and supportive care in Creutzfeldt-Jakob disease and related disorders (Age and Ageing 2026)

This open access paper in Age and Ageing is a practical guideline for clinicians on palliative and supportive care in prion disease, written from UK practice, with comments on Japan, Germany and the US. It was led from the National Prion Clinic in London with palliative care departments in Oxford, Newcastle and Cambridge, and has 35 listed authors. The evidence is thin: the authors say no randomised trials exist for symptom management, so most advice rests on observational work and panel experience. It is meant for healthcare professionals, but also says patients and families may find it useful for advocating for good care and locating support. It is useful to the atlas because it sets out in one place what care looks like from diagnosis through bereavement. This entry reports the paper and is not medical or legal advice.

Key facts

  • The panel came from around the UK and included prion physicians, nurses and researchers, palliative care doctors, psychiatrists, a general practitioner, a clinical neuropsychologist and a lived experience representative; specialists were asked to comment on practice in Japan, Germany and the US.
  • Method was a hybrid workshop, drafting of sections by authors with interest in each area, a PubMed search on 26 January 2026 and a final workshop. The panel plans to reconvene in 5 years.
  • The authors recommend a multidisciplinary team: general practitioner, occupational therapy, physiotherapy, speech and language therapy, district nurses, geriatrics and old age psychiatry, palliative care, social work and the national prion services.
  • Future care planning should start as soon as possible, ideally at diagnosis, because capacity may be lost during the time taken to reach a diagnosis; early palliative care involvement is encouraged to guide these talks.
  • For families, the paper covers mistrust after a long route to diagnosis, anticipatory grief, stigma from BSE era misconceptions, and fast legal and financial demands. It says helpful steps include disease specific information about what to expect, skills training, and help reaching practical, respite, mental health and financial support.
  • A table gives suggested plain language answers to questions families often ask. For a relative of someone with a genetic form, it says first degree relatives carry a 50 percent risk, a blood test can show carrier status, the choice to test is personal, and counselling is usually offered first.
  • Families and staff should be told there is no evidence of person to person spread through regular social and clinical contact; people with prion disease, and those at increased risk from family or medical history, cannot be blood or organ donors and should tell their care teams before medical or dental procedures.
  • For neuropsychiatric symptoms, the paper treats challenging behaviour as communication of an unmet need, suggests looking for triggers and adjusting the environment first, and keeps medication for severe distress or risk. It notes such symptoms can resolve quickly, so watching and waiting is often justified.
  • Myoclonus that is infrequent may not need treatment, and distress for families watching it should first be met with explanation. The paper gives drug tables for prescribers, based on limited evidence and on other dementias; those tables are not reproduced here.
  • On feeding, the paper describes weighing the risk of aspiration against the benefit of food and drink by mouth. It reports that added survival from tube feeding falls in the akinetic mute period, and says decisions are individual and should be reviewed regularly.
  • UK cohort data in the paper put place of death at 28 percent home, 28 percent hospice, 23 percent residential or nursing home and 21 percent hospital.
  • Bereavement support is available from national CJD specialists, local services and charities, and the National Prion Clinic can offer follow-on care to at-risk relatives in inherited cases. A table lists UK and international resources, updated at the National Prion Clinic site.
  • Differences abroad: tube feeding is common in Japan, German access can depend on insurance processes, and US care is more dispersed, with no national care fund or routine specialist nursing service.
  • Funding came partly from the ESRC and NIHR Dementia Initiative 2018 (grant ES/S010327/1); workshops were funded by the NIHR UCLH Biomedical Research Centre and the MRC Prion Unit. Authors declared no conflicts.

Timeline

  1. 2026PubMed literature search run.
  2. 2026Manuscript received by the journal.
  3. 2026Manuscript accepted.
  4. 2026Issue date, volume 55 issue 7.
  5. 2026Published online.
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