Trips to the emergency room aren’t usually due to joyous circumstances.
Yet most people find ways to cope with the anxiety of such a visit.
But for people with Alzheimer’s or dementia, a visit to the emergency room often devolves into a bout of delirium.
The inability to logically process what’s going on creates an additional layer of concern for the doctors, nurses, and technicians who are caring for these people.
I saw this firsthand when my father visited the emergency room with severe stomach pain. It turned out he had pancreatitis due to gallstones.
He also has Lewy body dementia, which means he has Parkinson’s-like symptoms well as memory loss.
He was admitted to the hospital and from the get-go, it was clear his stay was going to be a challenge for him and for the people who would care for him.
He couldn’t answer questions about his pain and within hours of being admitted he was convinced he’d been kidnapped. This lasted for almost his entire stay.
The challenge with people with dementia
My father’s reaction was textbook, according to Margaret Dean, RN, CS-BC, NP-C, MSN, FAANP, Texas Tech Health Sciences Center, Geriatric Division, and a member of the Alzheimer's Foundation of America's Memory Screening Advisory Board.
What’s more, she said, it showed the challenges that healthcare providers face when caring for people with dementia.
Even simple procedures like taking blood pressure or administering a shot can be confusing or scary to someone with dementia.
“They tend to get confused when things are happening so fast,” she told Healthline.
More than 5 million people living in the United States have Alzheimer’s disease. By 2050 that number is expected rise to 16 million.
As modern medicine continues to make advancements and humans live longer, Dean noted that hospitals can expect to see more patients with memory loss disease.
She said in a few years, experts say that by the age of 85 at least 1 in 2 people will have some type of dementia, mainly Alzheimer’s.
Dean believes that the healthcare industry needs to play catch up if wants to properly care for people with these conditions when they come to the emergency room.
She said it’s not uncommon for these healthcare workers to have little experience with people with dementia or Alzheimer’s. Her mission is to educate the masses on caring for geriatric patients in general.
“Healthcare workers need to learn how to deal with these people, how to talk to them,” she said. “It’s like with pediatrics. You’re not just dealing with the patient; you’re dealing with all of the other people around them.”
What medical workers should do
One of the most glaring issues is that dementia or Alzheimer’s doesn’t reveal itself in blood work.
Nor does it show up on the patient’s face.
The two diseases also don’t follow a structured path of symptoms.
One person may not be able to remember names while another may not remember how to complete simple tasks such as tying their shoes.
Dean said by nature the emergency room is chaotic.
At any given time, patients have multiple people completing different tasks. But that environment can only exacerbate the anxiety someone with dementia is experiencing.
“They do that because they are in a hurry,” she said. “I get that, but they have to limit the amount of things that are going on at once.”
Healthcare providers should also take a moment to reassess their bedside manner when assessing dementia and Alzheimer’s patients.
“When you talk to them, speak very simply,” she said.
What family members should do
The best advocates for a person with Alzheimer’s or dementia are family members, according to Ruth Drew, MS, LPC, director of Family and Information Services at the Alzheimer’s Association.
Family members need a game plan for when or if a hospital stay in required. First and foremost, all important documents must be copied and readily available.
“Advanced directive, power of attorney,” she said. “Like an emergency kit that’s ready to go.”
Secondly, she says that family members need to take a proactive approach, particularly in the early stages of an emergency room visit.
“I think we expect that everyone knows more than we do,” she said. “But not everybody who works in the healthcare field understands the impact of the disease.”
On the first night my father was admitted, I had to remind every single person who entered his room that he had dementia.
His Alzheimer’s diagnosis was buried in his electronic file and didn’t pop up as soon as they entered his name into their system.
Drew said it’s important to be specific.
Let the nurses, doctors, and technicians know what your family member likes and doesn’t like.
Maybe loud noises are too distracting. Maybe they respond better when the nurse speaks close and with constant eye contact.
The subtle differences can make a world of difference.
“Be a spokesperson, ask a lot of questions about the medicine, procedures,” she said. “Ask, ‘how can we get this in the chart?’”
Training medical personnel
Dean said many of the issues that I faced with my father’s hospital stay could be resolved if geriatrics, including dementia and Alzheimer’s care, were considered mandatory rotations for all healthcare providers.
“It needs to be a required track, at the baccalaureate level, grad level, medical school, residency, PT, OT, pharmacy,” she said.
A rotation would provide proper training in “what to say, what not to say, how to understand where they are at,” she said. “What is their reality, because often their reality isn’t present day.”
She mentioned a time she was talking to a someone with Alzheimer’s who was at the nurse’s station, and asked him what year was it.
“He said 1936. And I asked him, ‘Where are you?’” she said. “He told me ‘I’m on my farm … and I have these mules and these people owe me money.’”
“Welcome to the world of Alzheimer’s,” she said.