Richard Holden, PhD, Research Scientist at Regenstrief Institute and Professor/Department Chair at Indiana University talks about a new app that helps caregivers.
Interview conducted by Ivanhoe Broadcast News in 2024.
We’re here to talk about this new app that you are creating, and developing, called Brain CareNotes. Just briefly tell us what that is, how it works, and what are the main features of this app.
Holden: Brain CareNotes is meant primarily for caregivers of people with dementia, usually family members. Sometimes it could be a neighbor friend, but very often somebody who’s related and providing care to that person who has dementia from Alzheimer’s disease or other conditions. Now the app is meant to be used by a caregiver to both become a better caregiver for their loved one, the person with dementia, and to be able to improve their health. It is around-the-clock technology that a person can use in their home or wherever they are. It also importantly connects them to a caring coach who provides them with the support they need to be a better caregiver and to take care of themselves.
And you had some caregivers involved in the process of creating and testing this app, right? Tell me about that and why you wanted that to be a big importance of this.
Holden: Yes, we went through many steps to develop the app. At almost every step, we were looking for input from people who knew what it was like to be a caregiver from one of two directions. Either they were a caregiver themselves and were in the middle of it or had been a caregiver in the past and the person they were caring for passed away. Or they were someone who was providing care to those individuals. We worked with social workers, nurses, program directors, and many others. They sat at the same table as us and developed the app with us. It’s what we call co-design or participatory design. They had a direct say in what the app looked like, how it functioned, and what it didn’t have. They didn’t want to have too much, which was very important that it was not overwhelming. But at every stage, we not only got input, but we also tested. We did several rounds of testing. From testing usability to testing in the home to see if it would work, and testing if we work on different phones. Then we did a test with 61 participants, caregivers, and patients to make sure that we were doing a good job when we put it in their hands for six months. We completed large pilot tests with dementia caregivers and found that it was easy to use, it was usable, and it was acceptable. That’s the only way that we would move forward is if caregivers approved.
You don’t want to add any more stress, right?
Holden: In fact, we also found out things that weren’t working that needed to be fixed and that was important. I think speaking of stressors, one of the things that almost everybody did not like was having to remember passwords. Having to both write them down, which they didn’t feel was safe, or store it in their memory and try to type it in on their phone with their thumbs. In the most recent version, we went to face recognition and thumbprint, which saved all sorts of frustration for people who didn’t want to remember passwords.
There are other apps like this, and when you were doing your research, you looked at them, but they were lacking things. How does this one better meet the needs of caregivers compared to other apps that might be available?
Holden: In fact, we did a systematic evaluation of what was out on the market for caregivers, and we looked at every single one of those apps, used it, ourselves, and had multiple people using it. Took each through their paces. What we found is that most of those applications for dementia caregivers are meant for education. They provide information which is great but it’s not enough. Our technology, and very few others on the market, provides support by a coach, assessment of how you are doing, using valid assessments for symptoms so that caregivers know where their care recipient is every step of the way. If things change, they know that they change. They’re not using a textbook to try to understand the general, they’re using the app to understand specifically what is happening. The other apps also don’t have that connection to someone who can either be a clinical or a coach type of individual who supports the caregiver. We thought that was important. We based our app on a clinical program that has been successfully running for about 20 years now. We wanted to make sure that there was some way that caregivers would connect to the outside world.
Let’s say I’m a caregiver and I get on this app, give me three examples of things that are common that they might use and that would be very beneficial to them.
Holden: The first thing you would do once you log on is you’d get a request to assess what are the symptoms that your care recipient is experiencing. You would go through a validated clinical assessment. Many questions and you might be wondering to yourself, could all those things happen to the person that I’m caring for and they can? You would complete the assessment, and that would tell you where your care recipient is in terms of their cognitive, behavioral, and functional status. You would know whether it’s severe, whether it’s moderate, or whether it’s mild, you would have an indication of where they are. You could look historically in terms of where they were versus where they are today, and you would get advice. The other feature you would get is what we call the CareNotes. And the CareNotes are these bite-size, easy-to-consume pieces of advice that are generated based on what your assessment was. If you have an assessment that shows that hallucinations are frequently occurring, you will get support on how to address hallucinations.
Talk about that and how that can help someone with using this app and just the importance of them focusing on their own health as well.
Holden: Yeah, the caregiver is what we call the invisible patient. They are themselves at risk for health, physical, and mental crises. They are more likely to end up in the hospital, they’re more likely to develop a disease. Just being a dementia caregiver, it’s stressful- it can be stressful and it’s also hard work that takes you away from your own goals, and your health. We know that. We address that because we are also aware that if you have a strong caregiver then you have a stronger likelihood that the patient will be well, we talk about this like putting on your oxygen mask before taking care of a loved one on an airplane. That is exactly what we designed the app to do, which is to both provide help for the care recipient and the caregiver. We assess the caregiver just like we do the care recipient. We want to know their stress levels. We want them to track it over time.
What do you think are some of the most common struggles and stresses that a caregiver faces on a day-to-day basis?
Holden: Patients with dementia often face what we call psychological and behavioral symptoms of dementia, or sometimes neuropsychiatric symptoms. Those range from depression to wandering, to hallucinations, to anxiety and agitation, repetitive behavior, and difficulty doing functional activities. All those things are land mines that at any point one could land on. So at any point in their trajectory, a person with dementia is going to be experiencing at least one of those symptoms, and throughout their life, 98 percent will experience any of those symptoms, but often they’ll experience multiple and those might change.
Where does the app currently stand in development?
Holden: We have two parallel paths. The first is to develop additional features and to commercialize the products so that anybody can use them. The other path is the research path, where we need to make sure that the application is effective, and that it’s doing what we say it’s going to do. Then we can make a case that it might save money, it might improve quality of life, it improve caregiver outcomes, and improve outcomes for the patient. The research is done in parallel so that we can make a stronger case for why others should adopt this. Why caregivers should use this. Why insurance companies should pay for this. The commercialization part is moving forward very fast because the app is fully developed, and it can be used today. If you were enrolled in one of our studies, you could use it today. If you’re not enrolled in one of our studies, you could use it, it’s not a problem. But we’re still working on making sure that you have the support that you need, the technological tech support that you have, as well as the coaching support that individuals will need. The app could be used today by anyone. Currently, it’s being used by participants that we’ve enrolled in our research study. Of course, we enroll new participants all the time and so more and more people are using it, but we are working with our commercial partners to make sure that it becomes available to pretty much anybody in the US.
When people use it, how does it work? Is there a fee to use it? Is that what you’re trying to get to work with insurance companies to cover that? And then how would they access it?
Holden: There’s a cost related to every user and right now, we’re thankful to have funding from the federal government, from the National Institutes of Health to conduct our studies and to pay for the expenses associated with using the app by people in our study. When it goes outside of that, we of course have some considerations around storage, security, development, upkeep, and all these other things. We don’t know what it will cost. I would love for it to be free to consumers because it benefits other parties. I talked about insurance companies potentially being interested in this because, for them, they would save money on the people they insure. Fewer hospitalizations, fewer other costs, fewer illnesses. As a result, there’s a good reason to invest in this app and to make it freely available to your consumers. Now we do that all the time with other things like Fitbit and other wearables. Insurance companies, and health systems, we’ll give them away knowing that they will make health better for the individual, and in the long run, it will not only save money but improve outcomes for the health system or the insurer or the company who has employees. That’s our goal, is to make sure that the people who stand to benefit the most from this, the caregivers themselves and the patients, are not paying for this product. But we also know that sometimes people want to pay for something good.
END OF INTERVIEW
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