Steve Johanson had a fierce and knowledgeable advocate at his side when he visited a hospital recently: his wife, Judy. In the six years since Steve had been diagnosed with early-onset Alzheimer’s disease, she had immersed herself in understanding the illness and preparing for its consequences.
But even so, the hospital stay to adjust Steve’s Alzheimer’s medication was a nightmare. In the emergency room, nurses briskly took his vital signs, oblivious to his confusion. When he became upset, the staff didn’t seem to understand why.
“I felt like we were aliens that had just landed in a place that had no idea of the language we spoke and no concept of the disease my husband had,” Judy Johanson said.
By the end of his four-week stay, Johanson said, her husband had lost the ability to walk and could not return to their Watertown home.
People with Alzheimer’s and other forms of dementia frequently need hospital care, yet few hospitals are prepared for them. Nearly every aspect of that environment — beeping machines, frenetic activity, rigid schedules — runs contrary to the needs of patients who arrive confused and fearful.
“Hospitals were never designed to accommodate people with dementia,” said Susan Antkowiak, vice president of the Massachusetts/New Hampshire Chapter of the Alzheimer’s Association.
With an estimated 120,000 Massachusetts residents suffering from Alzheimer’s disease, and 150,000 expected by 2025, an effort is underway to improve patients’ experiences in a place one advocate calls the last frontier of dementia care: hospitals.
A committee established in 2016 by the Legislature recently called on hospitals to develop, within three years, a comprehensive plan for addressing the needs of patients with dementia, about 60 to 80 percent of whom have Alzheimer’s. Composed of elder-care specialists, government officials, and patients’ caregivers, the committee recommended establishing protocols for identifying people with dementia, training staff, and changing the surroundings, such as creating quiet areas.
The recommendations are voluntary, and hospitals face big challenges adapting their fast-paced, high-tech environment to the needs of fragile minds. But the Massachusetts Health & Hospital Association, which had a representative on the committee, said hospitals are committed to addressing the problem.
A hospital was not an ideal environment for Steve Johanson, who was diagnosed when he was 59 — among the 5 percent of Alzheimer’s patients who are stricken before age 65.
When Steve began experiencing terrifying hallucinations that caused him to strike out defensively, his doctor advised a hospital visit to adjust his medications. Judy took him to the emergency room at a hospital she declined to name.
“I thought we were going to a safe place,” she said. “I found out they were really not prepared.”
After hours of waiting, Steve began hallucinating and grabbed his wife. As the staff rushed to subdue him, they kept asking him why he was attacking her.
To Judy, that was like asking a person having a seizure why he’s thrashing about. Didn’t they understand that Steve is a gentle man in the grip of a disease he cannot control?
Soon the Johansons were moved to a separate area, with a guard at the door. Sedated, Steve lay with his wrists tied to the bed rails above his head. Judy made sure the restraints were removed within a half-hour, but the couple stayed in the emergency room for four days, until they found a bed in a geriatric psychiatry unit at another hospital.
The problems persisted at the second hospital, as miscommunications and misunderstandings led to Steve being restrained again. Judy insisted on staying at his side for 24 hours to ensure every staff member on every shift understood her husband’s condition.
“Every single person had empathy. They were skilled in their professions — just not educated in Alzheimer’s,” she said.
Judy Johanson, 55, is a board member of the Alzheimer’s Association’s local chapter. If someone like her had such a struggle, she worries, how excruciating must it be when the patient’s spouse is frail and elderly, or when there is no advocate at all?
Dr. Mark Messenger, a Lynn internist who specializes in home care for elderly people, said a hospital stay can be disorienting for anyone but becomes traumatic for a person who’s already confused. When patients become agitated, the hospital’s response is often to sedate them, with inevitable side effects, Messenger said.
Many people with Alzheimer’s are accustomed to walking a great deal, he said. In the hospital, they’re required to stay put, frustrating them and speeding their decline. People often lose the abilities they had before admission, such as how to dress themselves.
Messenger tries to keep his patients out of the hospital whenever possible. “When they come home, they’re not the same person as when they went in,” he said.
Barbara Meehan of Wareham witnessed that phenomenon with her late partner, Faye Miles, who was diagnosed with Alzheimer’s in 2008.
Miles was hospitalized three times for urinary tract infections. Each time, she returned home less able to take care of herself.
After the final visit, Miles had to move into a nursing home. She died in 2015 at age 75.
Like the Johansons, Meehan and Miles said they encountered hospital clinicians who were well-meaning but ill-informed. At one hospital, when Meehan left Miles overnight, she returned to find her with one hand bruised and the other tied to a railing. Miles had been pulling out the intravenous line.
“If they called me, I would have come to hold her hand,” said Meehan, who had been with Miles for 35 years.
Even though she told staffers that Miles had Alzheimer’s, Meehan said, a social worker interviewed the patient, heedlessly inscribing Miles’s skewed responses.
State law requires police officers and staff at nursing homes to receive training in dementia. But hospitals remain one of the last frontiers of dementia care, said Daniel Zotos, director of public policy and advocacy for the Alzheimer’s Association’s local chapter.
Although every state has an Alzheimer’s disease plan, Massachusetts is alone in establishing a committee focused solely on hospitals, according to the national Alzheimer’s Association.
The committee’s September report provided 70 pages of resources and suggestions. Patricia M. Noga, vice president for clinical affairs at the Massachusetts Health & Hospital Association, said the association has formed a working group to identify ways hospitals can change and share knowledge about practices that are known to work.
“Everybody is on board with it,” Noga said.
Emerson Hospital, in Concord, has already taken steps to accommodate patients with dementia, said Margaret Foley, director of care management. The staff works to help patients maintain the abilities they arrived with, she said. Trying to avoid sedating medications, the hospital seeks other ways to soothe, such as a family photo or a familiar blanket.
Zotos said many hospitals have instituted beneficial practices, “but these efforts are in no way a standard, are often piecemeal, and would certainly lack the comprehensive approach outlined in the report that is necessary for success.”
Many effective measures “are not a heavy lift,” said Alice Bonner, Massachusetts secretary of elder affairs and cochairwoman of the legislative committee. She recalled a daughter telling the committee how merely placing her mother near a window had eased the ordeal. And other changes, such as lowering noise levels, benefit all patients, Bonner said.
Bonner expressed confidence the committee’s work will reap results, because dementia stirs such deep concern. She sees it at every talk she gives: When she mentions dementia, people are riveted and line up afterward to talk with her.
“Everyone has a story,” Bonner said. “Dementia just strikes a chord with people. This is a disease that is about families.”
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