A new study out of Indiana seeks to find better ways to support dementia patients and their loved ones in home care settings. Nearly half a million Hoosiers and their caregivers are affected by Alzheimer’s or dementia and many struggle with symptoms of anxiety and agitation. Indiana Public Broadcasting’s Jill Sheridan spoke with Dr. Greg Sachs from the Regenstrief Institute and Indiana University Center for Aging Research, who leads the trial to examine ways to alleviate some of these struggles.
Jill Sheridan: Talk a little bit about the background for this for this type of work. I mean, obviously, you saw a need, right?
Dr. Greg Sachs: My grandmother had Alzheimer’s disease. And she died in a nursing home. After repeated infections, trips to the hospital and having been restrained when she had behavioral problems, I have a very deep and abiding passion for wanting to improve the care of people with dementia and provide greater support to their families.
Sheridan: When you’re looking at what’s going on now in care as well. And we’ve seen you know, the situation is not ideal for caregivers, and for people with Alzheimer’s or dementia. What are the issues now that you want to tackle with this study?
Sachs: Despite there being greater recognition of Alzheimer’s disease and other dementia as being a serious medical problem, and one where there’s a lot of money devoted to research in terms of imaging and genetics and trying to find medical treatments, we still don’t have those.
We have millions of people with Alzheimer’s now, and millions more families that are affected by it, who need ways to manage until we have more effective treatments. And so it’s providing supportive care, education, ways for families to be able to better manage behavioral problems at home, and support when they have to make difficult decisions about various types of treatment as the disease progresses.
Sheridan: Oftentimes, people with dementia or Alzheimer’s are given medication to relieve some of these symptoms, but you’re hoping to achieve this without pharmaceuticals.
Sachs: Precisely, in fact, the medications that are used, especially to treat behavioral problems and psychiatric symptoms, the evidence that they actually help is really pretty thin. And we actually have fairly good evidence that there are some potential harms.
Sheridan: So talking about this study, we know it’s funded with a grant from the National Institute on Aging, what’s the name of the study and and how will it be built?
Sachs: It’s called IN-PEACE (Indiana Palliative Excellence in Alzheimer’s Care Efforts). The goal the study, as specific games that relate to improving the care of the patient with dementia, and helping to treat behavioral symptoms, as well as pain and other symptoms, goals relating to improving the wellbeing of the caregiver, the family members, so that they have less distress and less symptoms of depression. And then the final aim is by being able to provide that kind of care at home, and do so proactively, that we’re able to prevent hospitalizations and emergency room visits.
Sheridan: In the trial there’ll be a group that is receiving just information and a group that’s receiving actual support from a nurse or social worker.
Sachs: Right. So the group that’s randomized, the intervention will get what we call collaborative care, which is we’re bringing a nurse or social worker to regularly contact the patient family at home. And they’re assessing them on a regular basis to try and uncover unmet needs before they become more of a crisis.
Sheridan: Palliative care is something that I think a lot of people are not familiar with, and don’t really understand you know what it is.
Sachs: Most people in the United States don’t know what palliative care is. But when you explain it to them, they love it and wish that they and their families could have access to it.
So essentially, think of it as an added layer of support and care for anyone with a serious illness. And the notion is that it focuses specifically on trying to provide better symptom management for the patient, supportive care to the families who are dealing with the stress of caring for someone with a serious illness, and helping people make this difficult decisions along the course of the serious illness.
We think that it should be integrated into the ongoing care of patients and so that’s exactly what IN-Peace is trying to do for people with dementia.