The palliative care needs of people living with sporadic Creutzfeldt-Jakob disease (sCJD) – the EMBED-Care study

<h3></h3> sCJD is a rare, fatal, rapidly progressive dementia, research exploring the palliative care needs of this population is limited. To understand the physical, social, psychological, and spiritual needs of sCJD patients. Cohort study using validated measures (pain assessment in advanced dementia (PAINAD), symptom management at end of life in dementia (SM-EOLD), integrated palliative care outcome scale for dementia (IPOS-DEM), Walker’s measure of integrated care). Measures were completed with family carers of patients with sCJD. We present an analysis of study entry data collected between Feb22-Jan23 on 42 patients with sCJD. The mean age was 64.9 years, 98% Caucasian, 64% female/36% male. Nearly half (45%) of the patients presented pain during activity and 24% presented pain at rest (PAINAD). The most reported symptoms (measured by IPOS-DEM) were poor mobility (37%), communication (26%) and weakness (20%), as expected. The SMEOLD mean score of 32.7 (SD 8.3) indicates good symptom management, and measures of care integration were high (4.1, SD 1.1), indicating effective co-ordination between healthcare professionals. The expected impairments of sCJD were well managed, however pain reported was surprising as, analgesia is not part of standard treatment regimes. The high level of care integration suggests effective co-ordination between specialist and local services.