Palliative Care Needs in Patients With Early-Onset Alzheimer’s Disease: A Cross-Sectional Report

Abstract

Background

Early-onset Alzheimer’s disease is a rapidly progressing condition that severely disrupts quality of life. Early palliative care incorporation helps identify patients’ needs and facilitates family decision-making and advanced care planning for later stages.

Aim

The study aimed to assess palliative care needs, level of suffering, and most frequent symptoms in Early-onset Alzheimer’s patients.

Methods

We present a preliminary observational analysis as part of a larger, 18-month longitudinal study of patients with early-onset Alzheimer’s disease. Patients with the PSEN1-E280 A variant of Early-onset Alzheimer’s disease attending the Antioquia Neuroscience Group at the University of Antioquia in Medellín, Colombia, participated. Data were collected using NECPAL, Edmonton Symptom Assessment System Revised, Global Deterioration Scale/Functional Assessment Staging (GDS/FAST), Pain Assessment in Advanced Dementia (PAINAD), and a numeric rating scale. Regarding data analyses from visit 1 (V1), variables were described according to their nature. A Poisson regression was performed, and prevalence ratios, 95% confidence intervals, and P values were obtained. Statistical significance was defined with an alpha value of 5%.

Results

Thirty-six patients participated in V1. Median age was 53. Most of them were women and lived in urban areas. The prevalence of palliative care needs was 22.22%. Poisson regression showed an association between clinician-perceived need for palliative care and dysphagia, pressure ulcers, asthenia, insomnia, functional decline, resource utilization, positive surprise question in NECPAL instrument, and scores of the PAINAD and GDS/FAST scales.

Conclusion

Patients with Early-onset Alzheimer’s have palliative care needs associated with symptoms related to disease progression, prognosis, resource utilization, and pain.