Pam Tripaldi's father, John Schatz, was an articulate man who retained his social and verbal skills long after his memory could not be trusted.
This created a problem that Tripaldi saw repeatedly during his hospital stays in his last years. Once, as she stood just outside his room in the emergency department, she heard a radiology technician preparing for an X-ray ask, "Are you diabetic?" This matters because insulin pumps can be damaged by X-rays.
"No," her father said.
"I yelled, 'Wait a minute,' " Tripaldi said. " 'He is diabetic.' "
Luckily, she saw only small lapses that caused no major harm, but, she said, "I could just foresee all the things that could go wrong."
Equally upsetting for her was the fact that poor communication in the hospitals meant that she was always having to point out her father's failings.
"The worst part of it was when I had to say, in front of him, 'He has Alzheimer's. He doesn't understand.' It broke my heart every time. I felt like I was constantly taking his dignity away."
Tripaldi's concerns reached a board member of the Pennsylvania Patient Safety Authority and led this month to a staff report on the danger of unrecognized dementia in hospitals.
Michelle Feil, a nurse who analyzed hospital data from January 2005 through December 2014, found 3,710 safety "events" involving patients with dementia or potentially unrecognized dementia. Seventy-two percent involved either falls or bed sores.
Feil found just 63 "near misses" stemming from hospital staff being unaware of dementia, but said these mistakes fell into just a few categories. She also said such events are likely underreported and reminded her of situations she witnessed while working in hospitals. Researchers estimate that doctors fail to recognize dementia in outpatient settings 19 to 67 percent of the time, she said.
In one case Feil discovered, an elderly man had said he had no hardware in his leg. During surgery to amputate the leg, his surgeon found a metal rod. It had to be cut. (The surgery went fine.)
Two cases Feil highlighted involved patients with dementia giving signed consent for surgical procedures when family members were legally designated to do so.
Feil said the mistakes fell into these five categories: failure to recognize the patient had dementia, failure to assess decision-making ability, failure to identify someone who could give a reliable history or make decisions, failure by the hospital to contact the surrogate when necessary and failure to tell all members of the care team about the patient's cognitive limitation.
Tripaldi, whose father died last September, would like to see patients wear a special wristband for dementia. Her dad already wore a yellow wristband to warn that he was at risk for falls. At first, Tripaldi suggested purple bands because purple is already associated with Alzheimer's disease. She found out that hospitals use it for people with Do Not Resuscitate orders, so now she thinks black would be better. She said she has approached hospitals in her area - she lives in Walnutport, outside of Allentown - with the idea and has made little progress.
"To me, it would make everybody aware without taking away the dignity of the patient," she said.
Gary LeBlanc, a Spring Hill, Fla., writer who founded the Alzheimer's/Dementia Wristband Project, promotes the idea of putting dime-sized purple-angel stickers on admission wristbands. He says it's important to combine that with staff education about how to deal with patients who are cognitively impaired.
During one admission, his father, who had dementia, kept ripping out his IV tubes. He told the nurses to write, "Do not remove" on his father's arm. They refused at first, but, after more bad behavior, they tried it. His father never touched the tubes again.
LeBlanc said four hospitals - two in North Carolina, one in Florida and one in Wisconsin - are now using the stickers. Interest is picking up, he said.
Feil isn't sold on using colored bracelets. One of the earlier studies the Safety Authority did was about confusion over what bracelets meant when nurses moved from one hospital to another. Since then, hospitals have made an effort to standardize colors, but Feil thinks the fewer of them the better.
"We at the authority aren't suggesting that people add another wristband," she said.
She thinks that hospitals should screen every new patient over 65 or so for dementia and then develop a system for communicating the results to the whole treatment team. They also need to determine whether the patient is capable of making decisions and, if not, who is.
James Ellison, a geriatric psychiatrist who chairs the Swank Memory Care Center at Christiana Care Health System, said using bracelets raises concerns about confidentiality laws and "labeling" patients.
Christiana has made it a priority for nurses to learn how to identify patients with dementia and to respond to them effectively, he said. The information is shared in the system's electronic medical record.
Delirium, a form of temporary confusion that is more common in patients with dementia but also occurs in others, is a huge problem in hospitals, he said. "It would be better to treat everybody with the same precautions," he said.