It’s hard to watch loved ones disappear. They begin to lose their memory, and then they can’t follow and respond to conversations. Finally, they can’t even take care of themselves.
My mom has moderate Alzheimer’s, and my 80-year-old dad takes care of her. He doesn’t get out of the house much, even to watch his grandchildren play baseball. He worries about leaving her alone — afraid she’ll put the kettle on and then wander out the front door.
When she leaves the house, she gets anxious, and it’s a production to get her ready. In the rare event she wants to go somewhere, her behavior is often too awkward for those who don’t understand her illness.
Alzheimer’s sufferers get confused easily. They tend to repeat questions and walk off — especially in the middle of the night. And taking care of them can be overwhelming. Not only to you have to be on guard 24-hours a day, you also have to live your life — work, take care of a family. Or, if you’re like my dad, take care of yourself as well.
To complicate matters, the different stages of Alzheimer’s have shifting challenges. For example, those with a mild case can still take medication and plan meals. Moderate stages need more supervision to help with basic tasks — and to make sure they don’t leave the house. That’s a bit like my mom. She doesn’t need 24-hour medical care yet, but she does need supervision. But it’s taking a toll on my dad. At a time when he needs community and family more than ever, he’s never felt more isolated. But technology can help.
GPS and smartphones, among other digital tools, can help ease the burden of those giving care. “We’re in the infancy of what technology can do for caregiving and it’s only going to grow,” Beth Kallmyer, vice president of the Alzheimer’s Association, told NBC News.
Some options connect caregivers, like my dad, to a support system, giving them advice during the frustrating time in their lives. The National Alzheimer Center, for example, released a $4 iOS app, called “Balance,” to help share the load with family members. Doctors often tell you to keep records of changes in habits, but with a couple taps, you can do it all on an iPhone.
Not only does it manage daily medications, dosing schedule and refill dates, it also organizes their schedule, giving you access to their calendars. You can connect and coordinate with family to split up tasks, or just tell them of the good and bad times to give you support. The diary feature is the most helpful, though. It records and shares changes in mood, and activities and memories with a doctor in real-time, so you don’t need to wait for the next visit to mention essential updates.
“We need to care for the caregiver too,” David Pomeranz, the app’s creator, said. “If the caregiver doesn’t have the proper supports, they simply can’t be a caregiver.” Balance goes well beyond just storing data, using mobile devices to lessen, and even share, the burden of dealing with the disease.
Into the Dark Night
Nearly 60 percent of Alzheimer’s victims have wandered off at least once, according to the Alzheimer’s Association. Not only is it dangerous, but it’s stressful for those taking care of them. More than four-in-five caregivers experience high levels of stress, the association added, and nearly half of them suffer from depression. They’re also more likely have anxiety disorders, substance abuse or dependence and even chronic diseases.
“They’re not getting enough sleep; they’re not eating right; they’re not getting enough exercise,” Kallmyer told CNN. Caregivers tend to lose touch with their world and that leads to isolation and depression.
Not long ago, my mom woke up and called 911 — she was at home, but she didn’t know where she was. When the paramedics raced to the house in the middle of the night, my dad had to explain everything. To discourage it from happening again, he disconnected the phone in her bedroom. If it happens again, he’s ready to unplug the lines in the house and sleep with his cell under his pillow.
Besides constant and strict supervision, he can’t do much — it’s impractical and exhausting. But that’s where GPS can help. For example, Securus is a compact and lightweight device that lasts up to a week on a single charge. Just strap it to a patient, and track their activity in real-time — with turn-by-turn directions over the Internet if you ever need to find them.
You can also set defined areas where they can roam, so if they wander beyond those “safe zones,” you’ll get a text or e-mail alert.
For more a robust tracking, the Alzheimer’s Association offers “Comfort Zone,” a $43 a month program. During early stages, a gadget is mounted on a car. When it worsens, a wristband is used for close monitoring. You can change devices as the disease progresses, so it’s a nice option if you want to extend their period of freedom without the inconvenience of bulky gadgets.
It’s hard to make sufferers them wear gadgets. Some are confused by clothing, like watches, and others are paranoid remove them completely. For those, sneakers with embedded GPS trackers are an ideal solution. Aetrex sells ones that cost from $200 to $300. A $20 a month fee is required for monitoring, which some insurance plans will cover it.
According to the Alzheimer’s Association, every 68 seconds someone is diagnosed with the disease, adding to the five million people already afflicted in the U.S. It’s the most common form of dementia. With no prevention, cure or slowdown on the horizon, those figures are expected to triple in 40 years.
But technology is making inroads. Theodore Berger, a biomedical engineer and neuroscientist at the University of Southern California in Los Angeles, envisions a day when patients with severe memory loss — from Alzheimer’s and stroke to other injuries — can receive electronic implants.
“We’re not putting individual memories back into the brain,” he told MIT Technology Review. “We’re putting in the capacity to generate memories.” His work builds on the idea that silicon chips can mimic the signal processing of normal-functioning neurons, which is how we recall experiences and knowledge for longer than a minute.
Restoring a form of cognition in the brain is far more difficult than similar breakthroughs, like Cochlear implants and robotic prosthetics for limbs. Still, he says he’s been working on the project for nearly two decades, and if he’s on the right track, brain prosthetics may soon be an option.
“In the early stages of Alzheimer’s, the eyes have a weariness, a veil of fear,” Patti Davis, Ronald Reagan’s youngest daughter, wrote about his worsening condition her book, “The Long Goodbye.” “I used to see my father’s eyes simultaneously plead and hold firm. Slowly, sometimes over months, sometimes over years, the eyes stop pleading.”
For any family dealing with the disease, those recollections ring true. But while we wait for more effective treatments, technology can help sufferers extend their independence and help those who love and care for them live more active lives. I’m just hoping caregivers, like my dad, can ease that burden and watch his grandchildren play baseball. ♦
Categories: Beyond Technology