Design and baseline findings of the NEODEM prospective cohort on early‐onset neurodegenerative dementia

Sophie Auriacombe, Emmanuelle Durand, Marion Kret, Leslie Cartz‐Piver, Frédérique Etcharry‐Bouyx, Mathilde Sauvée, Serge Belliard, Adrien Julian, Benoit Le Bail, Eric Frison, Vincent Planche
Alzheimer's & Dementia: Diagnosis, Assessment & Disease Monitoring. 2026-04-01; 18(2):
DOI: 10.1002/dad2.70361

Abstract

INTRODUCTION
Functional prognosis of early‐onset neurodegenerative dementia (EOD) remains poorly understood.

METHODS
The Neurodegenerative Early‐Onset Dementia (NEODEM) study is an ongoing prospective multicenter cohort study investigating factors associated with decline in daily activities in EOD. Detailed information on behavioral and psychological symptoms of dementia (BPSD) is collected as prognostic factor.

RESULTS
Between May 2020 and May 2023, 162 patients with EOD, including 111 patients with early‐onset Alzheimer’s disease (AD) and 40 with frontotemporal dementia (FTD) variants, were enrolled in seven tertiary memory clinics in France. The median time from symptom onset to diagnosis was 3 years. By design, Clinical Dementia Rating (CDR) scale score was 0.5 or 1 at inclusion. Baseline level of autonomy was similar in early‐onset AD and FTD, but MMSE scores were lower in AD. Baseline BPSD results are presented in the manuscript.

CONCLUSION
Four‐year longitudinal data, available from 2027, will help clarify the impact of baseline factors on future functional status, institutionalization, morbidity, and mortality.