Up to fifty per cent of nursing home residents suffer from cognitive impairments, rendering them unable to verbally communicate their experiences of pain or anxiety to the staff and healthcare professionals responsible for their care. Consequently, the essential data for assessing these symptoms and making informed treatment decisions is often absent from nursing homes’ electronic health records (EHRs).
A recent scholarly article discusses an innovative approach to adapting a widely used symptom assessment tool to gather this elusive data more effectively. The aim is to broaden the scope of palliative care services in nursing homes and better address the symptoms experienced by the residents.
Detailed in the article is a component of the extensive, multi-state, multi-facility UPLIFT-AD study—standing for Utilizing Palliative Leaders in Facilities to Transform Care for People with Alzheimer’s Disease. This study involves a collaboration among researchers from the Regenstrief Institute, the Indiana University School of Medicine, and the University of Maryland School of Social Work. They have innovatively retooled and validated a symptom assessment tool that is globally utilized. Initially designed for use by family members to report post-mortem symptoms of individuals with dementia, the UPLIFT-AD researchers have modified this tool to enable current assessments by nursing home staff and family members of residents suffering from moderate to severe dementia.
Kathleen T. Unroe, M.D., MHA, M.S., and John G. Cagle, PhD, spearheaded the project. The findings of the peer-reviewed study indicate that the refined tool effectively captures both physical and emotional distress, overall well-being, and symptoms that typically precede death. This validation is crucial as the team works to develop protocols for enhancing symptom recognition and management across nursing homes. Utilizing standardized instruments facilitates direct comparison of research findings.
Dr. Unroe, Dr. Cagle, and their colleagues, including Wanzhu Tu, PhD, from the Regenstrief Institute and the IU School of Medicine, are nearing the completion of the UPLIFT-AD clinical trial. This trial aims to improve the quality of care for individuals with dementia by fostering the integration of palliative care within nursing home settings.
Dr. Unroe, who also serves as a Regenstrief Institute research scientist and an IU School of Medicine professor, noted the challenges of measuring symptoms in cognitively impaired nursing home residents. Despite her two decades of experience as a clinician and researcher in nursing homes, Dr Unroe highlighted the inconsistency and insufficient frequency of data collection, which complicates the evaluation of treatment programs and methods. She explained that the most reliable method to assess if a resident is experiencing a symptom like pain or anxiety is to ask them directly, an approach that is often not feasible with cognitively impaired individuals. By validating the adapted assessment tool in a broader demographic—residents currently living with cognitive impairments—the researchers aim to fill this gap in data collection.
Moreover, while hospice care remains accessible, there is a recognized need for more comprehensive palliative care in nursing homes. However, a clear framework for effectively providing such care remains challenging. Dr. Unroe and her team are hopeful that the final results of UPLIFT-AD, expected in 2026, will offer a replicable model for implementing essential palliative care in these facilities, thus significantly enhancing the quality of life for these vulnerable populations.
More information: John G. Cagle et al, A Psychometric Evaluation of the Staff-Reported EOLD-CAD Measure Among Nursing Home Residents With Cognitive Impairment, International Journal of Geriatric Psychiatry. DOI: 10.1002/gps.70037
Journal information: International Journal of Geriatric Psychiatry Provided by Regenstrief Institute
