John Cagle: Older Adults With a Dementia Diagnosis in Long-Term Care

These conversations are about goals of care, advanced directives, and so these are advanced care planning type conversations. These conversations are really important when you've got people who have a progressive illness that will very likely eventually hinder their capacity to make decisions.

Associate Professor John Cagle, PhD, is focusing his multiple research projects right now on nursing homes, but mostly with one group of nursing home clients— older adults with a dementia diagnosis in long-term care.

"This clinical trial, a five-year R01 study funded by the National Institute on Aging, is designed to evaluate whether a model of care using a palliative care approach improves the quality of life and quality of care for patients in long-term dementia care in nursing homes,” explains Cagle. This work is taking place in 16 nursing home locations—eight in Maryland and eight in Indiana. Researchers are using an implementation model of care that uses a consultation approach. "Basically,” says Cagle, “we go in, educate members of the existing staff. We identify 2 people who are willing to serve as kind of internal champions within the nursing home to implement palliative care principles.” In addition, connections are made with outside palliative care experts. “So, if a patient who has cognitive impairment, likely dementia, is struggling with burdensome symptoms that can't be resolved. Typically, the internal folks will go in and do their best to resolve the issue, and if they're struggling to provide relief then they can contact the outside consultant to come in and address whatever symptoms are going on. At least another set of eyes and ears. Somebody who's got strong expertise in the field.”

While it is too early in the study for overall results, Cagle is discovering some important things. “We're finding that a lot of residents do not have good family support. We've been struggling to connect with families to get their opinions on quality of life, quality of care. Typically, the intervention is designed to address not only the resident's care concerns but also to help support the family members that are often providing their own kind of support. And in past projects, I found that if we do a better job of educating and supporting family members that the patients end up getting better care.”

A second project Cagle is working on is a collaboration with John Hopkins University and is an R15 five-year clinical trial focused on dementia care funded by the National Institute on Aging. "We are looking at patients earlier in the dementia care continuum,” says Cagle. He adds, “We're looking at working with families who are still receiving care. They're still going to clinics, typically living at home. The purpose of this project is to see if having conversations early in the dementia trajectory improves end-of-life outcomes. “These conversations are about goals of care, advanced directives, and so these are advanced care planning type conversations. These conversations are really important when you've got people who have a progressive illness that will very likely eventually hinder their capacity to make decisions.”

Now entering the fifth year of the study, Cagle, and others “We're surprised that people who have early signs of cognitive impairment can engage in conversations about future goals of care and preferences for care. We are finding that generally people can provide at least some indication of the kinds of things that they would want or not want later in their healthcare journey.” The results of the study will be shared with the nursing homes participating in the study and then to share the results nationwide.