Mara Botonis Video (Text Version)

PRARP Consumer Vignette

Title: A Caregiver's Perspective

Consumer: Mara Botonis, UsAgainstAlzheimer's

Alzheimer's is such a growing epidemic in our country, especially in the senior population. When you think about it, this was a population that didn't have seatbelts in cars; they didn't wear a helmet on a motorcycle, let alone a skateboard. And we've learned so much more now, and I wonder if some of the indicators that we're getting right now about how important it is to prevent traumatic brain injury, and how to treat a concussion, will maybe decrease the occurrences of Alzheimer's disease in the future.

At 14, I volunteered at a nursing home in Upstate New York. At 16, I became a certified caregiver; that's how I worked my way through college. And my career has been in healthcare ever since, in the senior living industry, specifically. So, in that context, I was always around residents that had varying degrees of dementia or cognitive decline, and it really hit home when the person that raised me started showing signs himself.

My dad died at an early age, so my father figure was my grandfather, and my grandfather was a military man his whole life and a career Air Force pilot. And so, the moment that he wasn't able to recognize me anymore, I realized that maybe all this professional training could be best used at home.

We lost him 2 years ago to Alzheimer's.

I think one of the best parts about the Congressionally Directed Medical Research Programs' Alzheimer's Peer Review Program is the different award categories. I don't know anywhere else that does an award category where they benefit researchers that are working on improving quality of life for persons living with dementia, but also taking a look at that caregiver burden, and I think that's incredibly unique.

For somebody to spend time and money and resources thinking about the wife, who is spending her whole day trying to take care of somebody that has no idea they ever dated let alone have been married for 50 years—are the parents of three or four wonderful children and grandchildren—that they're taking a look at how to lessen that heartache, I think matters, and for the adult children as well.

There are physical needs that increase over time as the person you love will gradually need more and more help with things like bathing, dressing, grooming, medication management, and toileting. But in the early stages, it almost hurts worse, because you're starting to see the person that you love, that you have all the shared history with, lose a little bit more of themselves every day. It's a whole family disease, and we talk about that a lot.

There's a lot of focus right now on finding a cure, and there isn't any better way to learn how to prevent, cure, or treat a disease than studying both those that are living with it and those that don't have it yet, so we can figure out “How do you avoid getting it?,” and if you've got it, “How do you live the best possible life?”

I think people have a lot of trepidation about a clinical trial. They don't maybe know what it is; they're not sure if it's going to be worth the time and effort. But, invariably, when I talk to folks that are actually participating in the trials, it's been incredibly empowering, because finding out where you are, finding out what your functional abilities are, finding out what your risk factors are, ultimately gives you more choices and gives you more control about what your future might be—what you can do to mitigate risk, and how you can get involved in maintaining your best possible health.

I just can't say enough about how grateful I am that the DoD has this program. I think when we think of the needs of Servicemen and -women and their families, I don't know that we always realize what's going on behind the scenes for their future. Some of those active Servicemen and -women right now might be caregivers for aging parents, so it affects them currently. But the fact that this program is really looking at the link between Alzheimer's and TBI, I think could be incredibly impactful.

Right now, we know that if you have high blood pressure or high cholesterol, you might be more likely to develop heart disease. But if we found out that folks with a traumatic brain injury, which we know is any injury that interrupts normal brain function—it could be a bump on the head, it could be a fall, it could be a motor vehicle accident, it could be a concussion that you don't even lose consciousness in—so many people fall into that category. And if we knew early on that if that occurred you might be more at-risk, and if so, how and when, and we knew how to prevent it, that would be huge. That would be huge, because there are things we can do to improve and protect our brain health. And it might alter the course of our future, and that's a big deal; because right now, there isn't an end in sight immediately for Alzheimer's, but with programs like this there could be—and there could be sooner.