The struggle against a devastating disease can have a profound impact on the lives of loved ones.
Greg Sachs, MD, professor of medicine and neurology at Indiana University School of Medicine and an investigator in the Regenstrief Institute and IU Center for Aging Research, remembers the agony his maternal grandmother faced when her life was unfortunately interrupted by Alzheimer’s disease in her early 60s. Sachs recalls being a teenager and witnessing his grandmother spend her final months in a nursing home battling infection after infection and either being physically restrained or receiving medications to combat agitation and other behavioral symptoms.
“I have vivid memories of my mom crying because of how distressing it was for her to see her mother like that,” Sachs recollects.
Once Sachs began a career in medicine, he was able to look back at his grandmother’s experience as a driving force to enable change for others with dementia.
“In my medical training, I learned how my grandmother’s final months were typical for people dying from dementia,” Sachs wrote in an article published in 2009 in the New England Journal of Medicine.
While restraints and anti-psychotic medications in nursing homes have been reduced, palliative care remains under-utilized for patients with dementia, especially in home care settings, even 40 years since the death of Sachs’ grandmother.
A better way to care
After he attended medical school at Yale University, Sachs moved back to his hometown to pursue a residency in internal medicine at the University of Chicago in 1985. Under the mentorship of Christine Cassel, MD, Sachs was drawn into fellowship training in both geriatrics and ethics, seeing these as areas in which he could practice clinically and conduct research aimed at solving some of the challenges in care for patients and families affected by dementia.
While palliative care fellowship recognition and board certification was not available until 2008, Sachs’ work in Chicago sought to improve palliative care for dementia throughout the course of illness, not just at the end of life, by enhancing advance care planning, symptom management and decision-making. Not only did this area of medical treatment correlate with Sachs’ passion in medicine, but it also seemed to provide answers to what would have comforted his grandmother when she needed it the most.
“In this area of medicine you’re able to make a difference,” Sachs stated. “It’s gratifying to make a difficult time that much easier for patients and their loved ones.”
Through his training in Chicago, Sachs was able to see how palliative care had profound impact on patients regardless of their prognosis.
Greg Sachs, MD with patient. Provided by the Regenstrief Institute.
Not just for dementia care
Sachs, who also serves as co-director at Indiana University’s Research in Palliative and End-of-Life Communication and Training (RESPECT) Center alongside Joan Haase, PhD, RN, FAAN and Susan Hickman, PhD, believes that palliative care isn’t reserved for improving the care of dementia patients but can be applied to all areas of medicine. Palliative care offers the chance to change how medical experts approach serious illness care, especially patient symptoms on account of disease— from pediatrics to geriatrics, cancer to heart failure, Alzheimer’s to other related dementias—in all hospital and caregiver settings.
“The center elicits why palliative care across age and disease spectrums matters,” Sachs said. “I’m confident that our research will show people palliative care can make an important difference.”
Lasting research
In addition to the RESPECT center, Sachs is actively pursuing research to better understand how applying palliative care both empowers caregivers and improves their quality of life alongside the patient’s.
“When someone with dementia comes in for an appointment alongside their caregiver, it’s important to approach that session as though there are two patients in the room,” Sachs mentioned.
Indiana Palliative Excellence in Alzheimer’s Care Efforts (IN-PEACE) is a five-year study funded by the National Institute on Aging (grant number 5R01AG057733) where Sachs and his team at IU and the Regenstrief Institute in Indianapolis test the use of an intervention that integrates palliative care into the ongoing care of people with dementia. The approach provides patient-caregiver pairs with a dementia care coordinator (nurse or social worker) who can help identify patient symptoms and address patient and caregiver needs before they become more severe or emergencies.
Over the past two decades, palliative care has quickly grown in both patient awareness and in accessibility. Once an unheard area of medicine, today 75-90 percent of patients are able to locate palliative care options in their nearby hospitals. This, alongside future research, opens doors for patients in need of symptom-focused care. Sachs continues to connect research advances to patients in need of better care, cultivating a lasting memory of his grandmother.
Learn more about current research in palliative care in Indianapolis and fellowship programs in palliative care IU School of Medicine.
