Caregiver Thought Leader Interview:
Andy Carle is an award-winning professor, Executive-in-Residence and Founding Director of the Program in Senior Housing Administration at George Mason University in Fairfax, Virginia. The program offers the first curricula in the nation dedicated exclusively to the rapidly growing senior housing field. As part of his work in technology, he’s served as an advisor to the development of the first GPS shoe for individuals with Alzheimer’s at risk of wandering. His book, Moments, Memories and Missions: Stories from the Field of Assisted Living, received a Silver Award during the 15th Annual National Mature Market Media Competition. Mr. Carle was recognized by Senior Living Executive magazine as one of six people with influence for the senior living industry.
Gary: Let’s start talking about something that I think is such an incredibly important issue for caregivers of people whose loved ones have cognitive challenges, such as Alzheimer’s. Current statistics indicate that about 60 percent of people living with Alzheimer’s are going to wander. And, of those who are lost over 72 hours, only 20 percent survive. These are really sobering statistics.
Andy: It’s really exponential in terms of those that do wander. It’s something that the caregivers in particular are dealing with all the time. In fact, one study showed that the number one cause of stress for caregivers of people with Alzheimer’s related dementia, other than the disease itself, is the fear of that person wandering off and becoming lost.
Gary: And, once they get out of the bubble of security of your home or their home, that clock is really ticking for their survival.
Andy: If you think about it, these are typically older, frail adults. Whether it’s exposure or injury or dehydration, it’s not a good thing when they become lost. And then the compounding factor, Gary, is that they’re not easy to find. They will not respond to calling out their name. In fact, sometimes, they will actually hide from the people calling their name because of paranoia; they’re afraid that someone’s after them. They may not even recognize their own name and just keep wandering and walking. So, it’s not the same as looking for someone else. These folks often don’t respond.
Gary: Can you tell me about the GPS SmartSole that you helped create?
Andy: GTX Corp, the company that makes the GPS SmartSole, and Patrick Bertagna, who actually invented it, did two things that were unique. One, they were able to miniaturize it enough to fit inside of an insole, looking like an insole you’d buy at any pharmacy. But, the second component may be more important; it allows you to then hide it on the person. The two primary manifestations of Alzheimer’s related dementia are confusion and paranoia. In the early stages, they’re going to be confused and they will routinely remove anything placed upon them with which they’re not familiar. It doesn’t matter if it’s on their wrist or around their neck or even tagged onto their sweater. If they feel it and discover it, they’ll remove it. In the past, we’ve had these devices and the manufacturers will tell you to lock it onto their wrist or their ankle. That flies in the face of what clinicians know would be the appropriate thing to do with these folks because they will, in fact, hurt themselves up to the point of breaking their wrist to get that thing off. So, it is important that we’re able to hide it and, obviously, placing it in their shoe is the ideal place.
Gary: And, it doesn’t have to be new shoes. It could be their shoes that they’re comfortable with because, for the most part, if you’re running around outside, the last thing you’re going to take off is your shoes.
Andy: A lot of people don’t realize there are three types of memory. The one that’s most relevant with Alzheimer’s is procedural memory, also known as habitual memory. It retains things that we do out of habit, and getting dressed is one of those things. It’s actually the last type of memory that’s retained in individuals with Alzheimer’s. So, even into the later stages of the disease, even if their caregiver dresses them, they will typically stay dressed and that includes, of course, their shoes. They’ve owned dozens, sometimes hundreds of pairs of shoes throughout their life. Putting on their shoes is literally part of their procedural memory. They’re perfectly comfortable doing it.
Gary: So, the GPS SmartSole—how does it work? What happens?
Andy: It’s really pretty easy. You put it in their shoe. It uses the same technology as cell phone, cellular tracking GPS and cellular tracking. You place it on a little static charging pad overnight, the same way you charge your cell phone. In the morning, when they get dressed, you slide it into their shoes. The only one you need to charge is the one in the right shoe.
The caregiver or family member and authorized user has access to a website. These come fully activated with a web account and it allows you to log on at any time and check the status and charge of the shoe. But, most important, it allows you to locate them at any time simply by logging on to your smart phone or your computer and sending a signal. In about 30 seconds, it’ll locate them for you using GPS or cellular and, typically, within as little as ten feet from where they’re standing.
There is also another feature, which is called a geo-zone or a geo-fence. You go to the account and set up a perimeter. Drag and click the mouse and make a little circle. You can set that up anywhere from 200 to 300 yards in any direction around your home, your church, the daycare center or whatever. So, if they wander outside of that geo-zone, even if you didn’t notice they were gone, you will receive emails or text messages automatically with a link to a Google map showing you exactly where they are.
I don’t want to make an assumption that it’s only for people living with Alzheimer’s or dementia. This could be used for autistic children or developmentally disabled children. What’s the spectrum of people who can use this?
Really, anyone who’s at risk of wandering and becoming lost and does not have the abilities to essentially rescue themselves or locate themselves or respond to a typical search and rescue. So, obviously, people with Alzheimer’s related dementia, but also autistic children. It really applies to a lot of special needs groups.
As an expert in senior housing, this has to be very exciting for you because it opens a whole spectrum of housing options. Somebody doesn’t necessarily have to live in a locked-in environment; they can live safely at home.
You can set up the geo-zone around your loved one’s adult day center. They can continue to go see their friends and receive day care. Not all families want to move their mom or dad into memory care Alzheimer’s programs if they don’t need all of the services they offer. They’re very specialized and very expensive programs. Wearing these shoes, they can stay in assisted living and not move into that memory care unit and incur that expense until they really need all those services.
How do people get GPS SmartSole?
Go to www.gpssmartsole.com
. You buy them medium or large, small coming out later this year, and then cut them to size to fit into your shoe. You sign up for your monitoring service at that time.
What is the one most important piece of advice that, above everything else, you’d like to share with family caregivers?
The very first rule is, are they safe? We deal with a lot of things in regard to aging parents or other special needs populations, children or even young adults. I always tell families the same thing. Start with whether or not they’re safe. Make sure that they are in the safest environment for them. All of the other things can be addressed, but if they’re not safe, it doesn’t matter what else you’re doing, and it’s going to cause you stress. It’s going to put a lot of pressure on you to have to deal with that extra variable. Anything we can do to help bring peace of mind to the caregivers and help them with that burden, which we know statistically not only wears them down, but can make them physically ill from the stress. If we can help with that, then that’ll relieve the burden on them and all these other things that we know they have to work so hard to do every day.
Listen to the Audio Interview