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Bring dying at home: What facilitates and hinders home-based end-of-life care for people living with dementia?-A systematic review and meta-ethnography protocol.
PLoS One
January 2025
Nursing Studies, School of Health in Social Science, University of Edinburgh, Edinburgh, United Kingdom.
Background: Although home-based end-of-life care is more in line with the preferences of people living with dementia, operationalizing this ideal remains challenging. Many people living with dementia are still unable to die at home or receive end-of-life care at home. This review aims to apply meta-ethnography to synthesize existing qualitative studies, to identify the facilitators and barriers of home-based end-of-life care for people living with dementia.
View Article and Find Full Text PDFA Psychometric Evaluation of the Staff-Reported EOLD-CAD Measure Among Nursing Home Residents With Cognitive Impairment.
Int J Geriatr Psychiatry
January 2025
Regenstrief Institute, Inc, Indianapolis, Indiana, USA.
Objectives: The End-of-Life Dementia-Comfort Assessment in Dying (EOLD-CAD) scale is one of the few outcome instruments designed to capture symptom burden and well-being among nursing home residents with dementia; however, psychometric evaluations of the EOLD-CAD are limited. Although the instrument is often used to assess outcomes prospectively, it was originally developed and tested as a postmortem assessment. The purpose of this study is to evaluate the instrument properties of the EOLD-CAD using staff reports from a large sample of nursing home residents with cognitive impairment prior to death.
View Article and Find Full Text PDFBeauvoir, Ernaux, and Me: On Age, Disability, and Dying Well.
Cult Med Psychiatry
December 2024
Department of Political Science, Seattle University, Seattle, USA.
Can the fraught relation between disability and aging ever become untangled? What is the place of the catastrophically disabled in a time when giving voice and being seen are significant lodestars of political activism? And what becomes of the caregivers, who often labor in silence, and who hope to work well enough just to get through another day? This essay draws on the memoirs of Simone de Beauvoir, Annie Ernaux, Amy Bloom, and my own experiences to show the complicated imbrications of age, disability, and caretaking. I attempt to demonstrate through these experiences that age and disability, which appear to be intimately woven together, are oftentimes misleadingly connected. I suggest that an ethic of vulnerability, rather, is a more useful heuristic that avoids collapsing the categories of age and disability together.
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