A tool that was once used to examine the intensity and frequency of pain in dementia patients following their death has been revamped to help skilled nursing facilities deliver palliative care to residents with moderate to severe dementia.
A team of researchers reconstructed the End-of-Life Dementia-Comfort Assessment in Dying, or EOLD-CAD, after a multifacility study showed that caregivers could adequately and reliably address a host of pain symptoms seen in end-of-life dementia patients. Often, this population is cognitively incapable of advocating for themselves, lead researcher Kathleen T. Unroe told _McKnight’s Long-Term Care News_ on Friday.
“This is the outcome measure we chose for a large 16-facility clinical trial on palliative care intervention,” said Unroe, a research scientist at the Regenstrief Institute. “It was designed initially after someone with advanced dementia had died, to look back at those last weeks of their life and ask about these symptoms. We most adapted it to be less about the instrument and more about the characteristics of the population.”
When clinicians working in the SNFs that were part of the trials used the EOLD-CAD, they were able to detect patterns in more than 600 residents that fell into four categories: physical distress, symptoms of dying, emotional distress, and well-being. Common symptoms observed across these categories were restlessness, shortness of breath, choking, gurgling, difficulty in swallowing, fear and anxiety.
The [researchers](https://pubmed.ncbi.nlm.nih.gov/39743326/) who repurposed the EOLD-CAD are part of a group known as UPLIFT-AD – Utilizing Palliative Leaders in Facilities to Transform care for people with Alzheimer’s Disease. Some of them come from US institutions, such as Indiana University and the University of Maryland.
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Such a tool is critically necessary for SNFs that care for individuals with an array of needs, from minute to severe, Unroe said.
But measuring symptoms to determine pain and to influence subsequent care, particularly for those who are cognitively impaired, has long been quite challenging.
[Research](https://www.mcknights.com/marketplace/addressing-cognitive-impairment/) from _PubMed_ found that up to 72% of long-term care patients have some degree of cognitive impairment. Yet during the course of her decades-long career as both a clinician and researcher, Unroe said information on a resident’s symptoms isn’t always available or isn’t collected often enough to ascertain appropriate next steps. This tool could change that.
“It can be difficult and burdensome to try and ask people with dementia questions. There are very clear, practical challenges with that and the validity of those measures,” Unroe said. “Detailed data is not consistently captured in the electronic health record. So, having reliable instruments is important so that we can have a structured way to assess the experience of people living with dementia.”