Can Technology Ease The Burden Of Caring For People With Dementia?
A doctor I interviewed for this story told me something that stuck with me. He said for every person with dementia he treats, he finds himself caring for two patients. That's how hard it can be to be a caregiver for someone with dementia.
The doctor is Bruce Miller. He directs the Memory and Aging Center at the University of California, San Francisco. According to Miller, 50 percent of caregivers develop a major depressive illness because of the caregiving. "The caregiver is so overburdened that they don't know what to do next," he says. "This adds a huge burden to the medical system."
This burden is going increase dramatically in the coming decade. By 2025, 7 million Americans will have Alzheimer's disease, according to one recent estimate. Millions more will suffer from other types of dementia.
Together these diseases may become the most expensive segment of the so-called "silver tsunami" — 80 million baby boomers who are getting older and needing more medical care. The cost of caring for Alzheimer's patients alone is expected to triple by 2050, to more than $1 trillion a year.
So UCSF, along with the University of Nebraska Medical Center, is beginning a $10 million study funded by the federal Centers for Medicare & Medicaid Innovation. Researchers plan to develop a dementia "ecosystem," which aims to reduce the cost of caring for the growing number of dementia patients and to ease the strain on caregivers.
That includes caregivers like Maria Martinez, 42, who visits her parents' small apartment in San Rafael, Calif., almost daily to help care for her mom, Aurora Martinez, who has Alzheimer's.
Maria Martinez is an only child with a partner and a full-time job as an occupational therapist. But nearly every day she spends at least a couple of hours with her parents, managing a long list of responsibilities that are critical to their ability to live independently.
"Does she have a doctor's appointment?" Martinez says. "Are there enough diapers? Clothing? Laundry. Financial stuff, I manage that too."
She bathes her mother, who is 78, manages upkeep on the apartment, does much of the shopping and fills prescriptions for both of her parents.
Especially in the early stages of Aurora's illness, practical concerns loomed large. Sometimes she would wander in the middle of night. Her husband, Arturo Martinez, 75, took to sleeping on the floor in front of the door, worried Aurora might end up falling in the street and being hit by a car.
Eventually, Martinez installed a lock at the top of the door where Aurora couldn't reach it, and a wind chime to serve as an alarm.
Though the Martinezes are not part of the study, they are the kind of family that the dementia ecosystem study is designed to help.
The study will enroll 2,100 patients at the two sites. Each patient will have a navigator, a nonmedical staff person who will coordinate care and triage calls, so minor issues don't land patients in the ER.
Some patients will also receive activity trackers and sensors, which will be placed around the house or worn on the patient's wrist. Much like Martinez's wind chimes, the idea is to see whether sensors can detect when a patient is wandering off or if they've been inactive for too long.
A few weeks ago, in a sunny conference room at UCSF, techies and doctors, almost all of whom have had family members with dementia, sat around a table, brainstorming other ways technology might be applied to dementia care.
"There are safety issues like leaving the stove on," suggests Katrin Schenk, who teaches physics at Randolph College in Virginia.
"You could easily put in a temperature sensor that knows they went in there and turned on that burner," Schenk says. "It's been on for two hours — someone needs to do something."
Or, she continues, what about the roughly one third of dementia patients who also have diabetes? Could Bluetooth-enabled blood-sugar monitors allow family members and medical staff to check up on them remotely?
If this all sounds intrusive, says Kate Possin, a neuropsychologist at UCSF, consider the alternative: anxious adult children, and parents who end up in nursing homes sooner than they want to.
"This may be a compromise for them," Possin says. "'If I use this system, then my son who lives three hours away feels comfortable and safe with me living at home a little bit longer.'"
A handful of tech start-ups are making the same case. In San Francisco, Lively markets a system of networked sensors and a watch that can pick up on activity around the house and let family members or care providers know if there's a worrisome change.
These kinds of products, which let doctors and caregivers check up on patients remotely, make sense for some cases, Schenk says.
But do they help in the long run?
That's one question researchers want to answer.
"I know for sure no one's gotten the data and proven that [this technology] works," Schenk says. "Proven that it improves peoples' health, improves caregiver burden."
"Reduces hospitalizations," adds Possin.
"Delays the entrance into a nursing home," finishes Schenk.
Researchers will also want to see whether sensors and other technologies are helpful for people in later stages of dementia like Aurora Martinez or whether they just create more hassle.
Possin says they hope to have some preliminary results next January.
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Transcript
RENEE MONTAGNE, HOST:
Now, let's turn to what's being called the silver tsunami. It's the nearly 80 million baby boomers in the U.S. who are getting older and in need of more medical care. Seven million of them will have Alzheimer's disease a decade from now, according to one estimate. And that means many other people will have to take on the role of caregiver. From member station KQED in San Francisco, Amy Standen reports on how technology might ease that burden and protect patients.
AMY STANDEN, BYLINE: A doctor I interviewed for this story told me something that stuck with me. He said for every person with dementia he treats, he finds himself caring for two patients. That's how hard it can be to be a caregiver for someone with dementia.
MARIA MARTINEZ: (Speaking Spanish).
STANDEN: Maria Martinez is helping her mom, Aurora, who is 78 and has Alzheimer's out of Maria's red Mini Cooper.
M. MARTINEZ: (Speaking Spanish).
AURORA MARTINEZ: (Speaking Spanish).
STANDEN: Aurora lives with Maria's father in a small apartment in San Rafael. Maria, their only child, comes almost every day.
M. MARTINEZ: I do the bathing, the shopping, medical care. I do the laundry just to help dad.
STANDEN: In the beginning, Aurora would sometimes wander at night. Her husband began sleeping on the floor in front of the front door to catch her.
ARTURO MARTINEZ: (Speaking Spanish).
STANDEN: "I was afraid she'd go out into the street while I was asleep," he says. So, Maria came up with a solution.
M. MARTINEZ: You hear these little wind chimes so we can hear when she opens the door and so forth.
STANDEN: Maria says right now, things are manageable. She and her dad can keep her mom living at home safely. But other families are emotionally and financially drained by this process. The cost for caring for Alzheimer's patients alone is expected to triple over the next 10 years to more than a trillion dollars a year. And that huge number doesn't include the burden on people like Maria and her dad.
BRUCE MILLER: Caregivers, approximately 50 percent, develop a major depressive illness.
STANDEN: This is Dr. Bruce Miller, who sees these problems daily at the University of California San Francisco Memory and Aging Center.
MILLER: Ten percent say that in the time that they give care that they develop a serious medical problem because of the caregiving. That's a cost as well.
STANDEN: This year, UCSF along with the University of Nebraska is beginning a $10 million study funded by the federal government to try and improve this situation and to find out whether technology can help.
(SOUNDBITE OF ARCHIVED RECORDING)
KATRIN SCHENK: You know, like the safety issues, like leaving the stove on.
STANDEN: A couple of weeks ago, in a sunny conference room at UCSF, techies and doctors sat around a table brainstorming. Almost all of them have family members with dementia. On the tech side, Katrin Schenk, who teaches physics at Randolph College in Virginia.
(SOUNDBITE OF ARCHIVED RECORDING)
SCHENK: You could easily put in like a temperature sensor and you know, well, they went in there and turned on that burner.
STANDEN: Oh, my gosh.
SCHENK: It's been on for two hours. Someone needs to do something.
STANDEN: Or for the roughly one-third of dementia patients that have diabetes, is there a way for doctors and family members to check those levels remotely?
(SOUNDBITE OF ARCHIVED RECORDING)
SCHENK: Yup, there are Bluetooth blood sugar meters. Very useful.
KATE POSSIN: I think we should enroll every patient with diabetes in our program into this.
STANDEN: If this all sounds intrusive, says Kate Possin, a psychologist at UCSF, consider the alternative - anxious adult children and parents who end up in nursing homes sooner than they want to.
POSSIN: This may be a compromise for them in their minds. If I use this system, then my son who lives three hours away feels comfortable and safe with me living at home alone a little bit longer.
STANDEN: Meanwhile, a handful of technology startups are making the same case.
(SOUNDBITE OF LIVELY AD)
UNIDENTIFIED WOMAN: Meet Mary. She's 88 years young and fiercely independent.
STANDEN: This is an ad for a San Francisco-based company called Lively.
(SOUNDBITE OF LIVELY AD)
UNIDENTIFIED WOMAN: Here's how Lively works. Lively centers are placed on objects in Mary's home, like her refrigerator, pillbox and keychain.
STANDEN: These kinds of products, which let doctors and caregivers check up on their patients remotely, make common sense, says Katrin Schenk. They should work, but do they in the long run? Back in that sunny UCSF conference room, Schenk and the others agree. That data just isn't there yet.
(SOUNDBITE OF ARCHIVED RECORDING)
SCHENK: I know for sure no one's gotten the data and proven that it works and proven that it improves people's health, improves caregiver burden. Reduces hospitalizations. Delays the entrance into a nursing home. Those companies don't have that data.
STANDEN: UCSF and the University of Nebraska also want to see whether sensors and other technologies could be helpful for people in later stages of dementia, like Aurora Martinez, or whether they'll just create more hassle. They're hoping to enroll 2,100 patients in the study and have some answers early next year. For NPR News, I'm Amy Standen in San Francisco. Transcript provided by NPR, Copyright NPR.
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