Estudio Palidem: cuidados al final de la vida en pacientes con demencia avanzada institucionalizados

Abstract

Objective: To develop a specific care plan for institutionalized patients with advanced dementia based on symptom control and including joint decision making with the primary caregiver as well as psychological and spiritual support. Method: A descriptive 1-period study at Centro Txara 1, from July 1 2014 to December 31 2016, which identified residents with advanced dementia and geriatric failure-to-thrive syndrome. Symtom control extent was quarterly assessed using the Symptom Management at the End-of-Life in Dementia (SM-EOLD) scale, and the PAINAD scale for pain; comfort at the end of life was assessed daily with the Comfort Assessment in Dying with Dementia (CAD-EOLD) instrument, and decisions were made jointly with the primary caregiver based on the goals of palliative care. After the death of the patient a satisfaction survey was administered to the caregiver (Satisfaction with Care at the End-of-Life in Dementia, SWC-EOLD), who was also provided with regular contact with the pastoral care team for spiritual support. Results: A total of 74 residents were assessed with a mean age of 87 years; 79% were females, mean number of drugs was 4.6, and Alzheimer’s disease was the primary cause of dementia. Stable-phase symptom control identified no relevant phisical or behavioral instability, but pain was found in 5% of the sample. Of 50 residents who passed away, 94% died in the hospice; in 67% comfort degree could be collected, and the presence of shortness of breath and dysphagia stood out, as aspiration-induced respiratory infection was the primary cause of death. Spiritual care was provided for 66% of the study population. In all, 30% of primary caregivers responded to the satisfaction survey showing a high percentage of acceptance of level of care. Conclusions: Identifying patients with advanced dementia at the end of life allows the development of a hospice care plan considering symptom needs, comfort degree and wellbeing, and involving consensus decisions about care proportionality with the family. Should an acute decompensation occur, coordination with the available social and healthcare resources is key for implementing the decisions agreed between the healthcare team and the primary caregiver.