As the Silent Generation is aging deeper into their 80s, and the oldest members of the Baby Boomer Generation are celebrating birthdays deeper into their 50s, elder care in the United States is becoming a more pressing and complicated issue by the day.
Yet, Karen.care Co-founder and CEO Paul Shustak told Karen Webster in a recent conversation that those huge costs and complexities are a bit on the invisible side to most people, because family members providing unpaid care for older family members is a massive and opaque part of the elder care system.
Those caregivers, he noted, tend to fit a pattern. Two-thirds of them are women, and generally fall between the age of 40 and 60 years of age. On top of their elder care responsibilities, they generally have children of their own to care for — and they work.
Shustak said that this group will often refer to themselves as the “sandwich generation” because they find themselves pressed between caring for the younger and older generations — for which they receive no pay and experience a lot of stress, depending on the situation of the elderly parent or relative. Shustak said they average about 22 hours a week managing and coordinating care, and in 70 percent of the cases, they are caring for someone that has either physical or emotional health issues.
Those costs, Shustak told Webster, can be measured in dollars and sense as well. On average, between professional opportunities lost due to time spent and the actual funds poured into caregiving, caregivers are losing about $350,000 dollars over a lifetime of caregiving. That, he notes, adds up to a total loss of $4 billion in collective lost productivity.
It’s a big loss — one Shustak realized was much larger than it had to be about eight years ago when his mom started falling unexpectedly and began experiencing the symptoms of dementia. At the time, he noted, she was based in New York, while Shustak was working as a technologist in Silicon Valley and his sister was living in Europe.
Suddenly and unexpectedly, they had a parent whose health was rapidly and seriously declining. There were two big problems: They had no roadmap to follow or any idea what to do, and they had no idea how they could manage any plan at all from thousands of miles away.
Shustak did what someone — who had spent most of their life as a product developer for large commercial software firms — does when they have a large, complex, expensive process to face with a lot of moving parts. He looked for a software platform that helps streamline and manage the process, and quickly learned that that program and platform didn’t exist.
So, the idea for Karen.care was born.
“We really started developing this idea, which really originated with me trying to solve this problem. But, what I discovered, I validated with other caregivers — and found out that everyone needed a platform that does three things: Helps them design a journey, connect to the right experts, and manage everything from scheduling to payments in one accessible touch point.”
The Care Journey
The problem with elder care for most people who find themselves entering its orbit is how disorienting it can be at first, particularly if one has found themselves there suddenly or unexpectedly. There can be a lot to do — and just sorting it all out can get overwhelming.
That is why Karen.care’s first priority, when it is working with new caregivers, is to help them develop a roadmap. And those roadmaps, he notes, can’t be generic if they are to be helpful. Every path through this terrain is going to be unique.
“The first thing we do is identify care needs, so that the caregiver can really start to get a sense of where this is headed. The way that works, at first, the user fills out a survey and, based on those answers, the base algorithm compiles a list of tasks for you, the user, that you will need to complete on that journey.”
That algorithm on its own, he noted, can take that data and extrapolate from its future needs. For example, Shustak noted, if the survey indicates that the patient is an 80-year-old with early and mild dementia, as it is tallying tasks, the system knows that dementia is a progressive condition and that it will likely become worse.
“And we have done various experiments to test our algorithms results against what doctors and medical professionals recommend — and we are at about an 80 percent success rate.”
As they system comes out of beta, and they reach a “critical mass of users,” they can further plug machine learning into that base algorithm — with the goal that they will have an even more accurate pathfinder tool.
It’s not meant to replace a human eye on the data, Shustak told Webster, even with the 90 percent or better accuracy rate for which they are shooting. When one is coming up with medical and lifestyle management journeys for actual people and patients to follow, there is always going to be a need for human oversight.
However, what automation and algorithms can do, Shustak said, is take a lot of the intellectual labor of just settling on a course for individuals and families helping manage care, which can take a great deal of stress and uncertainty out of the process.
Often, Shustak noted, the sort of health and wellness journeys patients and families go on is something of a team play that a lot of people need to be involved in.
On a macro level, he noted, that means build-in functions around things like messaging and setting custom tasks. The algorithm will do a good job of broadly outlining a task set for caregivers, but for every individual case there are going to be unique needs.
On a more micro level, Shustak notes, most of these areas come down to planning management — and among Karen.care’s goals is expanding the breadth of tools available for that goal.
“That means adding in things like a calendar, and a mechanism to divide up tasks between family members, and customize messaging and notifications around tasks. We also let people build in information like medication lists, emergency contacts and other custom features — because people need to be able to access day-to-day planning tools.”
That issues, he notes, can’t ever be wholly addressed by software, but a lot of effort can be just better directed and coordinated by it. And being able to coordinate, he noted, is especially important when things like geographical distance come into play.
“We also want to get people thinking about seeing problems before they start — and to be able to start thinking about how to solve them early,” Shustak told Webster.
That is why, he noted, Karen.care will soon open a marketplace where family members can reach out and tap into the professional services they need, before issues become huge problems.
Finding Expert Help
Designing care plans, Shustak noted, particularly when the relative being cared for has declining cognitive features, can get complicated — which is the reason for something like power of attorney, so that caregivers can directly manage finances for the care more easily.
“That is not the kind of thing most people are walking around thinking about until they need it — and it is not something that the average consumer can reliably do for themselves.”
What they need, he said, is an elder care attorney who specializes in that care. But again, that is not an easy thing to hire for someone you care about, particularly at a distance. The same is true when one is looking for in-house medical care, or around-the-clock private care, or even something as simple as a cleaning service. Elder abuse and elder fraud are both endemic problems, and the consequences of hiring the wrong “expert” can often be catastrophic.
Karen.care provides direct access to experts they’ve already vetted to make sure they are suitable platform partners — and leaves those professionals’ profiles open with reviews for potential customers to see.
“The way this will work, for the user, they will have the opportunity to directly message and ask as many preliminary questions as they need before engaging a service. It is a way for families and experts to build a relationship before a formal transaction.”
As for how payments will move around the marketplace? Shustak told Webster that, as the service is still in beta, it is a question they are still working through.
A subscription model for consumers makes some sense, particularly as the platform becomes a more robust care management tool. Conversely, charging the transaction on the platform also has a certain performance-based appeal.
That decision, he told Webster, will be informed by how well, coming out of beta, they are able to build toward their larger goal of being the trusted arbiter in this space — and the natural starting point for anyone who is trying to figure out the first few steps on an elder care journey.
“In the past,” Shustak told Webster, “this question about elder care and managing it has been mostly medical. We are saying there is more opportunity than that, and that by being more commercial and offering a better marketplace to access service, we can really improve quality of life and care all around. And not just for older patients, but also for the people who are providing care.”