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With Alzheimer’s, the phone can be both a lifeline and a danger

Should you take away the phone? Dementia makes people more vulnerable to scammers.

John McInerney, 61, was diagnosed with early-onset Alzheimer's disease in 2017.  He is shown here with his wife, Susan, in a May 2018 photo.
John McInerney, 61, was diagnosed with early-onset Alzheimer's disease in 2017. He is shown here with his wife, Susan, in a May 2018 photo.Read moreCourtesy of Susan McInerney

Now that he knows his mother has Alzheimer’s, Jim Klunder realizes he should have worried more about a ubiquitous American tool — her phone — when she first showed signs of cognitive decline.

He later learned that his widowed mother, now 85, was an easy mark for scammers in the early stages of the disease, which often affects decision-making capacity as well as memory. The disease, he said, “took her ability to say no and to process things. She was ripe to be taken advantage of.”

She decided to make some unnecessary repairs to her home in California, said Klunder, who is active in the online community. She bought seven cell phones and cosigned a car loan for a man he thinks did some repair work for her.

Klunder, whose mother now lives with him and his wife in Berwyn, doesn’t know what role the phone played in the initiation of these scams, but it definitely kept the exploitation going. She donated money on the phone, and the guy who got her to buy those phones “used to call her all the time.”

Cars are a well-known danger to people with dementia and those who share the roads with them. One of the toughest decisions families face is when to take away the car keys.

Dangerous phone use is an emerging issue as members of a generation more familiar with smart phones develops dementia. Like computers, cell phones can make it easier to make bad shopping and investing decisions. But several area caregivers said they actually worry more about landlines. Most incoming calls nowadays seem to come from sleazy telemarketers who prey on the elderly and unsophisticated. Phones of any type can become a problem when anxious people with dementia call family members or businesses like banks dozens of times a day because they don’t remember earlier calls.

At the same time, phones are a lifeline. They’re a way for family members to check on relatives who insist on living at home but need support. Cell phones are also a way to track people with dementia who are at risk for wandering and getting lost. Klunder’s mother, for example, rarely even hears her cell phone ring anymore, but she keeps it in her purse, which she always carries. “We keep it as a tracking device,” Klunder said.

John McInerney, 61, who was diagnosed with early-onset Alzheimer’s disease in 2017, is a nurse who transitioned into IT work. The Cinnaminson man has largely stopped using his computer because it’s too frustrating. His wife, Susan, who still works as a nurse, sometimes sits with him so he can read emails from their daughter, an opera singer in Germany, or Skype with her.

He’s finding it harder to use the phone now, too. Susan said he can’t text or retrieve messages, but he answers when she calls. He finds the phone comforting even though he’s not sure he could figure out how to use it in an emergency. He knows strangers might try to take advantage of him so said he answers calls only from people he knows.

» READ MORE: Penn and Drexel experts see hope for better lives with dementia

At a recent Alzheimer’s Association support group meeting for caregivers at Daylesford Crossing, a senior residential facility in Paoli, Gretchen Kierman said her house in Devon was flooded with “magazines galore” her husband had apparently ordered on the landline. “I finally just said, ‘Don’t answer the phone.’ ” He recently moved to Daylesford, where he doesn’t need a phone.

Eric Hofer, of Exton, whose wife has frontotemporal dementia and whose 104-year-old mother had a stroke at 99, said it’s hard enough for him to avoid phone and computer scams. He worries about his mother, wife, and “anybody that’s even slightly aging.” Hofer said his mother sometimes answers robocalls at the retirement center where she lives because she’s too nice. “I said, ‘Mom, just hang up,’ ” Hofer said.

Klunder is sure his mother would answer a landline — if he had one.

“My recommendation would be not to have a landline,” he said. “That should not be the way you communicate with them.”

Cynthia Clyburn, a social worker who runs two support groups connected with Penn Memory Center, said cell phones most often come up in her group for people with early memory loss. At that point, people are experiencing problems operating their phones but also rely on them. Many use their phones to keep track of appointments and stay organized.

Caregivers like them because they can use apps like Life360 and Find My Friends to track family members with dementia.

While we might think of calls as a prime source of scams, Clyburn said one patient recently fell for a scam on Facebook that said the VA was giving out grants worth $10,000. He gave his Social Security number and address to apply. A common phone scam involves telling older people they need to pay off a grandchild’s student debt.

People with frontotemporal dementia, which affects executive function, are especially vulnerable because their judgment is impaired and they make impulsive decisions.

She encourages patients to let a “trusted partner” check their phone history occasionally.

Sometimes the solution to phone misuse is a simpler phone, like a Jitterbug. There are also simple phones that have photo phone directories. The Alzheimer’s Store online has some examples.

Caregivers can also make smart phones simpler and less dangerous by deleting apps. If the person with dementia notices, she suggests “loving deceit.” Tell him, “I can’t pull it up any more, but we’ll re-install it later.”

People with dementia can learn new things if they practice enough. That means it can help to tell them repeatedly not to answer the phone unless they know the caller and to never give out personal information.

It can be tough to take the phone away completely, said Silvia Toscano, who leads support groups for the Alzheimer’s Association. “It’s kind of hard to take something away from someone who has dementia. They’re losing a lot of control,” she said. “Sometimes a cell phone is a sense of control and security and they’re able to talk to loved ones.”

The problem often works itself out as the disease progresses, Clyburn said. Eventually most people just get so frustrated with the phone that they stop using it, but that may leave families with a new problem. If their loved one is still at home and can’t call 911 if there’s a fire or an emergency, that’s a sign, Clyburn said, that the person needs more supervision.