Neuropalliative home care for sporadic Creutzfeldt-Jakob disease: a case report using validated multidimensional assessment tools

Abstract

Abstract Creutzfeldt-Jakob disease is a rare, fatal prion disorder characterised by rapid progression and profound suffering for patients and their families. In this context, neuropalliative care plays a critical role. The use of standardised, disease-specific assessment tools for rapidly progressive low-prevalence disorders can facilitate care planning and support the delivery of timely, proportionate interventions that adapt to the evolving needs of patients and their caregivers. Case presentation We report the case of a 71-year-old woman with a 4-month history of vertigo, dysphagia, and rapidly progressive cognitive and behavioural decline. Diagnostic evaluation was consistent with sporadic Creutzfeldt-Jakob disease (sCJD). Given her substantial palliative care needs, she was enrolled in a home-based palliative care program for comprehensive assessment and management. Care was guided by the patient’s previously expressed advanced care directives and supported by validated tools to monitor symptom control and clinical progression. The patient died at home 69 days after diagnosis. Conclusions Early integration of a home-based neuropalliative care approach, supported by validated tools for clinical follow-up and symptom control, enabled the delivery of proportionate care consistent with the patient’s advanced care directives and facilitated a comfortable end of life at home.