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New Ulm, Minn., 18 years ago: The bus from the nursing home moves through the below-zero snowy prairie to the clinic where a freshly minted young doctor has just started practicing. The bus attendant unloads the elderly patients in their wheel chairs and rolls them, one by one, into the clinic.
The doctor, a Mayo resident in psychiatry, feels well equipped to handle this, newly armed with a prescription pad and an abundance of optimism. The attendant quickly scampers away, and the doctor approaches the patients, who are in various stages of dementia. Each one has an envelope, attached by a pin, to their sweaters.
The doctor opens the first envelope and the note says: “Always gets agitated in the early afternoon.” The next envelope: “Cries out in the night.” A few short words about each patient, and that’s it.
Without anyone ever saying a word to her, the doctor understood the expectation: Fix this with a pill.
And Dr. Tracy Tomac said to herself: “This is not going to work.”
What she intuitively knew then, and what she now knows with considerable experience, is that you rarely “fix” an elderly person with dementia with a pill. Medication obviously has a place, but it’s not the be-all and end-all. And as she would soon see firsthand, it can often hurt more than it helps. Just as giving antibiotics at the first sign of a cold could be overreacting, so could giving antipsychotics or antidepressants at the first sign of agitation.
“But back then,” Dr. Tomac says, “this was just how medicine was practiced on nursing home patients.”
Early on, she decided it was not how she was going to practice. When she started rounding at a nursing home for elderly nuns, she started to understand her options. This was a close, supportive community able to give her lots of information about each patient. She was learning that truly knowing patients and their history could be a more powerful tool than the prescription pad.
Dr. Tomac soon moved to Winona, Minn., and her new job allowed for even more rounding at nursing homes — something she loved. Also, she was fascinated by the culture of caregiving in small-town Minnesota. Everyone knew everyone. Nurses and other caregivers were taking care of their friends and neighbors, and the background they had about each patient gave the doctor rich diagnostic information. Caregivers were like extended family, and Dr. Tomac was beginning to see how crucial “knowing the patient” as an individual is to practicing psychiatry the way she wanted to do it. She saw how important relationships were to the patients. Connecting on a personal level had a healing power all its own.
Dr. Tomac was captivated by the remarkable life stories of these determined, courageous people who had struggled through the Great Depression and World War II, and she saw how relevant these stories were as dementia progressed and communication skills declined. Dementia patients often were more connected to the past than the present, and behavioral episodes often were directly related to a person’s history. For example, patients who walked incessantly around the nursing home may have had careers requiring constant on-the-job walking.
The patients’ many engaging stories of hardship and triumph reminded Dr. Tomac of her Great-Grandmother Flo who had come to America from Wales in 1920 — with nothing — and carved out a vibrant, productive life. When Grandma Flo was in her 80s, Tracy was just a kid and would travel from Texas to visit her in Pasadena, Calif., during the summer. Grandma Flo was the “original little old lady from Pasadena,” always on the go. “She was a role model for active aging,” Dr. Tomac says.
Grandma Flo never regarded herself as old and was a serial volunteer at local nursing homes. As an octogenarian, she would say without a trace of irony, “Hey, Tracy, let’s go visit the old people.” Even then, Tracy loved going to the nursing homes. As the cute little kid, she was the center of attention.
And now, in rural Minnesota, Tracy Tomac, the psychiatrist, was still the center of attention in the nursing home — now because she had the prescription pad. The nurses called all the time asking the doctor to give patients something to help them sleep, something to calm them down, something to stop their outbursts. “Give them something” was a constant refrain.
What Dr. Tomac started to do was give them close attention. Like the time an elderly woman with dementia was screaming in the night, every night, that there were “baby heads” flying around in her room. Give her something, please, the nurse asked.
Dr. Tomac went into the room, sat on the bed and tried talking to the woman. And something caught her eye. She left the patient, went to the nurse, and offered this prescription: “Change the bedspread.”
While in the room, she noticed that the bedspread had a vivid design of “peach cabbage roses.” The head-like design could easily transform into “baby heads” to a person with dementia, with limited sensory input. “With dementia, the mind does the best it can with the sensory input it has,” she explains. “The mind takes whatever input it gets and tries to fill in the blanks.”
Removing the bedspread worked. Sure, a sedating drug may have worked too — but most likely with unnecessary side effects.
And there were more situations like this— enough to make Dr. Tomac think medication should not always be the first tactic. She was convinced, but the nurses weren’t. She knew she needed to some way persuade them, since they were the “boots on the ground” who she depended on for crucial diagnostic information.
So Dr. Tomac tried the educational approach. She would hold seminars at care centers over lunch and talk to staff about how to analyze the cause of behavioral outbursts and manage difficult behaviors without drugs. But this was slow going. Really slow.
“Once I was in a place for about two years, people would start to trust me,” she recalls. “Then I would begin to notice that the approaches I was advocating started to be fed back to me. Nurses would start telling me about a patient’s issues, then would say: “But I don’t think medication is necessarily called for in this situation.”
Dr. Tomac was now working at St. Luke’s Hospital in Duluth and rounding at nursing homes in the area. In 2008, while visiting what is now Ecumen Scenic Shores in Two Harbors, Minn., she met an Ecumen nurse manager named Eva Lanigan. They were “kindred spirits.” Eva had attended a workshop about the dangerous side effects of antipsychotic drugs on elderly people. When she looked around the care center, she saw too many patients in a drug-induced fog and wanted to do something about it.
Dr. Tomac was just the doctor to see about that. Together, they started going through residents’ charts, one by one. What drugs were they on? Were all the drugs necessary, given the diagnosis? What could they do to slowly wean the patients off the drugs?
This was the beginning of the Ecumen Awakenings program — two women determined to give elderly dementia patients a better quality of life. They went to work creating a collaborative program with the patients, the doctors, the care team and the family to replace sedation with an integrated, holistic program of care. They just did it—patiently and systematically with a clear vision of the outcome they wanted—but with no blueprint from official sources and with no certainty that it would work.
As their collaboration progressed, Eva began to formalize the program. The entire staff of Ecumen Scenic Shores — including housekeepers, cooks and dining room servers — received training in methods to calm residents when they became agitated, using non-pharmaceutical techniques like redirection, exercise, activities, music, massage and aromatherapy. The staff was taught how to listen to residents and enter their reality, responding to them without insisting on facts that those with dementia can’t grasp or won’t recall.
They started in the early spring of 2009 and by early fall that year, ALL inappropriate antipsychotics were discontinued and antidepressants were reduced by 30 percent. Ecumen Scenic Shores was no longer a quiet place. It had literally come alive. Residents who had been immobile began participating in balloon volleyball. People who had not spoken in years were becoming more verbal. Residents were smiling and participating in sing-alongs.
The dramatic results prompted Ecumen to start exploring ways to make Ecumen Awakenings more widely available. Laurel Baxter, RN, an Ecumen quality improvement nurse now retired, was appointed to formalize the program so that it could be replicated in all 15 of Ecumen’s nursing homes. The State of Minnesota awarded Ecumen a performance incentive grant — essentially venture dollars to support innovation in long-term care— which financed the implementation. Carefully monitored results showed dramatic reductions in the use of antipsychotic medications and dramatic increases in alertness, mobility, and laughter, more restful sleep, fewer falls, enhanced verbal ability, singing, ability to exercise, and reductions or eliminations of erratic mood swings, hallucinations and outbursts.
On March 17, 2014, Ecumen received national recognition for Awakenings, winning the LeadingAge Excellence in Dementia Care Award.
Coming out of this Awakenings collaboration, Dr. Tomac is now a medical consultant to Ecumen, helping nurses and other caregivers stay abreast of the latest developments in care and helping Awakenings continue to grow and evolve as it is expanded to assisted living communities. The consultancy is a way for Dr. Tomac to stay in touch with her geriatric interests, now that she has made a career change and moved to Regions Hospital in Saint Paul, Minn.
She currently works as an inpatient hospital psychiatrist treating adults. She finds surprising similarities in treating hospitalized patients and nursing home patients, particularly in an institutionalized setting with patients who have perhaps experienced many losses — particularly loss of control over their environments. All age groups are struggling to make sense of their worlds, she says, and their perceptions may be altered by mental illness or dementia.
She finds that the elderly are in a way easier to diagnose since they have a long history. If you can understand that biography, treatment options are much clearer. Younger patients' lives are more of a "work in progress,” she says, “and we have the opportunity to try to help the patient change the trajectory.”
"An elderly person with dementia or a psychiatrically ill inpatient is just trying to make sense of the world and get their needs met, just like all of us." says Dr. Tomac.
Regardless of age, Dr. Tomac’s approach is this: Accept people where they are. Talk with them, not to them. Try to put yourself in their place. Figure out what’s causing their fear and anxiety. Look at the entire environment, not just at the person. And look for the unmet needs. Yes, sometimes a drug is the answer. In cases of severe mental illness, prescription drugs can give people their lives back. But dementia is something else entirely . Rather than see the behavior of dementia as purposeless and disease-driven activity to be managed with drugs and restraints, we can see it as an attempt to cope with real problems that often can be dealt with by changing the patient’s environment.
Looking way back to those early days in New Ulm, Dr. Tomac says she knows everyone was just trying to do the best they could with the tools and knowledge they had at the time. Like everything else, the practice of medicine and the culture of care evolve. Ecumen’s nurses now frequently recite the mantra: “When we know better, we do better.” They now know a much better way of care than using chemical or physical restraints.
Likewise, new doctors coming to rural Minnesota now will be practicing on a whole different landscape.
Last year, the American Psychiatric Association issued an advisory saying anti-psychotic medications should not be the first treatments doctors think of when dealing with dementia in elderly persons, and this year the American Geriatrics Society issued a similar one. Plus, the Centers for Medicare & Medicaid Services now have a national campaign focused on reducing the use of antipsychotics in nursing homes.
Doctors, nurses and patients all have experienced awakenings.
Read The New York Times 2011 story on the beginnings of Awakenings at this link.