By 2025, 7 million Americans will have Alzheimer’s disease, according to one recent estimate. Millions more will suffer from dementia caused by other diseases, such as Parkinson’s, frontotemporal dementia or just regular aging.
Together, these diseases may become the most expensive segment of the so-called “silver tsunami”—80 million baby boomers—that will be crashing into the American medical system over the next 10 years or so.
The cost of caring for Alzheimer’s patients alone is expected to triple by 2050, to more than $1 trillion dollars a year.
That huge cost doesn’t include the burden on caregivers like Maria Martinez. She visits her parents’ small apartment in San Rafael almost daily to care for her mom, Aurora, who has Alzheimer’s.
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.
A local day program, LifeLong Medical Care’s Marin Adult Day Health Center, has been a lifesaver for her family, Martinez says. But still, she is constantly checking up on things.
“Does [Aurora] have a doctor’s appointment? Are there enough diapers? Clothing? Laundry. Financial stuff, I manage that too,” says Martinez.
She bathes her mother, 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—Maria’s father—took to sleeping on the floor in front of the front 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.
Martinez says right now her family is managing well, all things considered. But there have been times when she couldn’t help but note the impact her mother’s illness has had on her own life.
“You can fall into that [state] where, ‘Oh my goodness, I’m feeling deprived,’” she says. “You have to snap out of it.”
The Second Patient
Bruce Miller, who directs the Memory and Aging Center at UC San Francisco, says for every person with dementia he treats, he finds himself caring for two patients: the one with dementia and the adult child or spouse who cares for them.
“You see it immediately when the patient walks in,” he says.
“Of caregivers, approximately 50 percent develop a major depressive illness,” Miller says. “Ten percent say that in the time they give care, they develop a serious medical problem because of the caregiving.”
Overburdened caregivers can make bad decisions about how to care for their sick parent or spouse, he says.
“We’re getting multiple calls around small problems,” Miller says. “The caregiver is so overburdened that they don’t know what to do next. This adds a huge burden to the medical system.”
Better, Cheaper Dementia Care
This spring, UCSF, along with the University of Nebraska Medical Center is beginning a $10 million study, funded by the federal government’s Centers for Medicare & Medicaid Innovation, to try and improve this situation.
UCSF and Nebraska researchers are using the money to develop a dementia “ecosystem,” which aims to ease the strain on caregivers while, reducing costs for caring for the growing number of dementia patients.
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. All care will be coordinated through an Internet “dashboard” developed by Salesforce.
Some patients will also receive a set of 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, conversely, when they’ve been inactive for too long.
A couple 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’s 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?
A Compromise Between Safety and Independence
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 in their minds,” 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—have what Katrin Schenk calls “face validity.” They make sense, for some cases.
But do they help in the long run?
That’s one question UCSF and the University of Nebraska Medical Center 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.
To learn more or to participate in the UCSF Care Ecosystem, please see tiny.ucsf.edu/CareEcosystem or contact Project Manager James Fraser firstname.lastname@example.org, (415) 353-4078