Diane Romano was diagnosed with early onset Alzheimer’s disease at the age of 52. In the nine years since, her husband, John, has taken care of her at their home on Long Island.

But he and other dementia caregivers have faced an added challenge the last couple weeks: extreme heat.

“It's difficult caring for someone who has Alzheimer's if you put the weather aside — just the normal day to day,” John Romano said. "When you add heat and weather, it impacts them in a number of ways.”

For many people, extreme heat is a nuisance. For Diane Romano and other dementia patients, it can be deadly.

About one in nine Americans over the age of 65 has dementia. It’s caused by degenerative neurological diseases like Alzheimer’s — and can impair thinking, reasoning, and memory.

People with dementia are also incredibly vulnerable to heat, researchers told Gothamist, in part because their patients have lost neurons in their brains. Changes to fluid levels in their bodies — like sweating and dehydration during a heat wave — can lead to less blood going to their brains, exacerbating the confusion already being caused by the neuron loss. They may take diuretic medications that can cause greater dehydration still.

“Her mind can't tell the body to adapt to the heat and she just kind of wilts,” John Romano said.

Dementia isn’t the only mental disorder that ERs see more of during heat waves. A June 2021 study by SUNY Buffalo tracked emergency room visits during heat waves that involved mental health crises across New York state.

John and Diane Romano

John and Diane Romano

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John and Diane Romano
Courtesy of John Romano

“We found a consistent pattern,” said Enki Yoo, a geography professor at SUNY Buffalo who co-led the study. “When the temperature increased over a certain level, there was an uptake of the emergency room visits due to mental disorder."

They saw spikes in anxiety disorders, mood disorders, schizophrenia, suicidal thoughts, and substance use. Yoo says one reason is hot weather makes it harder to sleep.

“People do not rest well,” she said, “and then they respond to whatever comes abruptly … they become more aggressive and violent.”

A study out of the U.K., released in May, estimated that the risk of someone with dementia going to the ER starts increasing at 17 degrees Celsius, or 63 degrees Fahrenheit. It goes up 4.5% for every degree Celsius. A 2019 Harvard study found a similar trend in New England “where long-term exposure to warmer climate and greater temperature variation significantly increased the risk of dementia-associated hospitalization.”

How to treat the mental heat

John Romano takes no chances in the summer months. He has technicians perform routine checkups on his air conditioning units and he installed a backup generator to power the central air during blackouts.

“I know in my situation that if it ever broke, I'd have to take my wife out and move her to a facility or a relative's house, or my son or daughter, somebody who does have air conditioning,” he said. “Because she couldn't survive.”

He explained that healthy people can adapt during a heat wave — go into the shade, turn on the A/C, have a drink of water. But a person with Alzheimer’s disease can’t make those decisions on their own.

Dr. Liron Sinvani is a geriatrician-hospitalist at Northwell Health. She said not all of these decisions are voluntary — a healthy brain can multitask.

“We're able to sweat when we're hot. We're able to feel thirst and then we're able to go get water to drink," she said. “We really need our brain to be working fully to balance all these things.”

People with dementia, however, might not feel thirsty, even when dehydrated. Sinvani said this happens across the board with people as they age, whether they have dementia or not. Brain cells and circuits don’t last forever.

But even if someone with dementia is thirsty, they might not be capable of getting a drink themselves or asking for one.

So how can you tell when someone with dementia is dehydrated?

It can be confusing because when you feel an older person's hand, it can actually be cold, but they can still be hot.

Dr. Liron Sinvani, Northwell Health

“It can be confusing,” Sinvani said, “because when you feel an older person's hand, it can actually be cold, but they can still be hot.”

She said instead of trying to gauge body temperature, look at their mucous membranes.

“Look inside their mouth, look at their eyes. Are their mucous membranes moist or are they dry? When they're dry, you know somebody's dehydrated.”

She recommended controlling the temperature of their living space with an air conditioner, if you have access to one. She said make sure water — or other beverages that they may prefer to water — are available, and be proactive about reminding them to drink.

Sinvini said there needs to be more awareness around dehydration and dementia. During heat waves, hospital staff receive way more visitors.

“We're seeing older people coming in with dehydration, with falls, with more confusion, urinary tract infections, which can happen when people get dehydrated,” she said.

Yoo said this problem is set to worsen with climate change. In parts of the country where extreme heat is currently less frequent, fewer people have air conditioning. That sets them up for danger as heat waves become more normal.

Studies show that the people who aren’t prepared are those who can’t afford air conditioning, who live on urban heat islands, and who are disproportionately minorities.

“So there is also the disparity of who's sent to the emergency room,” Yoo said.

The study from England estimated that if greenhouse gas emissions don’t go down, heat-related emergency room visits among people with dementia could increase by 300% over the next 20 years.

So what can people with no air conditioning do to make sure the heat doesn’t affect vulnerable loved ones?

Sinvani and John Romano both suggested cooling centers — libraries, senior centers, even Petcos — places the city makes sure are cool and open to the public.

“I know some caregivers who have, you know, thrown their spouse in the car and drove to the local mall on a hot day, just to walk the mall to be in cool air conditioning,” said John Romano.

The Alzheimer's Association has programs to help caregivers. And Sinvani said people can talk to a medical provider to find other forms of support.

Combined, their message is clear: don’t be afraid to lean on others to beat the heat.