The United Nations (U.N.) recently laid out a plan for addressing mental health issues and noncommunicable diseases, like heart attacks. And for the first time, the plan also mentioned neurological conditions, like dementia. That got us curious. What’s going on in Wyoming, where roughly 12,000 people experience dementia-like symptoms? And how can folks better navigate hard conversations around those conditions, especially as the state’s population gets older?
Wyoming Public Radio’s Hannah Habermann sat down with Kevin Jameson, the CEO of the Dementia Society of America, and Ross Schriftman, a Casper resident and dementia awareness advocate.
Editor’s Note: This interview has been lightly edited for length and clarity.
Hannah Habermann: Ross, you live in Casper. What's going on there when it comes to raising awareness about dementia?
Ross Schriftman: I met Kevin through the time that I was writing a book and about to produce a movie called “My Million Dollar Mom,” and I cared for my mom when she did get what appeared to be Alzheimer's.
I've done several presentations here in Casper, and my goal with this is to get people to understand what it's like from the perspective of the caregiver.
Before my mother got sick, I was doing long-term care insurance for twenty years and helping my clients, but until you're in it 24/7, you don't realize what goes into it. The little things that you have to watch for: making sure the person is safe, making sure the person is taken care of.
The insurance can help pay for the care, but you're still the primary caregiver, whether you're in the sandwich generation – the people between taking care of their kids and their parents – or just simply an old single guy taking care of his mom. It's difficult.
HH: Kevin, how would you define dementia and how would you define Alzheimer's, and what are some of the common misconceptions about those two terms?
Kevin Jameson: The first thing to understand is that dementia is not a disease. That's a really new concept to a lot of people.
Dementia is a term that we use to describe a set of symptoms, and the symptoms can include memory loss, which is what people oftentimes think of. It also includes changes in personality and behavior, changes to the way somebody moves, how they ambulate, their perception of time and space.
What causes those symptoms are diseases and disorders, and Alzheimer's disease happens to be one cause. But it's one of over 200.
HH: Back in December, the U.N. adopted, for the first time, a plan to address major neurological disorders like dementia. What is in that plan?
KJ: When you look at the United Nations and not only global organizations but U.S.-based organizations, it almost always starts with a need for caregiver support.
And even before that, recognizing what the extent of the need is. Because a lot of people think about dementia, but don't actually want to say the word.
There's a lot of taboo. There's a lot of stigma around it. And I think international and national organizations, by publicly stating that they're going to add neurocognitive conditions to the work that they do, that alone is raising the bar for awareness.
It used to be the “C word.” People wouldn't talk about cancer. Now you can find pink ribbons on milk cartons and on garbage cans and cookies. It's no different with dementia. Now it's the “D word.”
HH: Ross, what changes do you hope this announcement will have here on the ground in Wyoming?
RS: As Kevin said, more awareness. A lot of times, especially with us guys, we don't want to face the fact that we could have problems in the future. I've done life insurance too, and when people buy life insurance, they are admitting that they're not going to live forever.
It's the same with long-term care planning. We put it off, we think, “Well, that's down the road.” And when it happens, we're not prepared.
All of a sudden, the person that's been independent is depending on other people at the end of life. We go from childhood, when we're dependent on our moms and dads, to later on, when somebody else is going to have to take care of that role.
It's very difficult, because people don't want to give up their independence and they don't want to be fussed over. That's a Wyoming thing too, it really is. It's like, “get back up on the horse,” “don't ask for help,” “but I don't want any help.”
It's very difficult for the families when they go through that, because you're taking the car keys away or making sure they're okay.
All of these issues need to be addressed in an open forum, people thinking about it for their own family and having meetings with their family well ahead of time. Because when you're in crisis, [when] everybody's in crisis, you can make bad decisions.
HH: As Wyoming's population ages, it seems like we'll see more and more people experiencing dementia. What is the state doing and what could the state do more of in terms of supporting people living with dementia?
RS: Being a rural state, there's more money coming in now from Washington [D.C.] for rural healthcare, and I know the [state] Appropriations Committee is working on that.
We have a real problem here. There's not enough geriatric [providers]. There's some great people right here in Casper. The Wyoming Dementia Care Center does a great job in helping people plan.
They need to go to professionals to help them in their planning: the family dynamics, finding the right doctors to help, the right facilities or home care services. We all have to help each other with that.
But being rural is very difficult because we don't have enough specialists. Maybe with this new money coming in, that might help.
HH: Ross, as you've been sharing this story about your mom through this book and short film, “My Million Dollar Mom,” what has it been like to bring that story to people and share that story out?
RS: First of all, I'm honoring my mother's memory. She was my greatest inspiration in my life. What I'm trying to do is tell other people my story, and when I do that, they tell me their story and people will tell me what they're going through.
The conversations sometimes will last an hour after the presentation is done, where people come over and talk and appreciate feeling like they're not alone.
One of the things that also is very good and I know they do here in Casper, is groups getting together that are experiencing [caregiving for dementia] or have the other end, after their loved one dies.
There's the grief period and how they get over [that], because you feel like there's a sense, when your loved one dies, of relief, which leads to guilt. Why do I feel relief? That's a difficult thing to deal with because why should you be kind of happy that the person has passed?
HH: I'm curious if you might be able to share some lifestyle changes or tools that you all have come across in terms of reducing the risk of developing dementia?
KJ: Most importantly, what we know at the top of the pyramid of brain health are things like physical exercise, blood flow to the brain.
The brain, which is an energy hog, needs a lot of blood and that keeps neurons healthy. Stimulation, that is being in new social circles, learning new things. Pushing your brain to try things that you do one way, do them differently. That's called neuroplasticity.
Then there's a lot of little things that can be major things. Smoking, alcohol, isolation. Those all lead to some pretty dramatic changes in our brain health.
RS: Following up on what Kevin said, it's not only physical exercise. It’s brain exercise. As I'm getting older, I'm 73, I feel like my responsibility to my own health is to keep my brain active and to look at things and try to understand things.
I know people go to Casper College for adult courses. We have a wonderful senior center here. Also socializing, I have a lot of friends here in Casper. It’s a great community [and] that helps.
Isolation is a problem. People should exercise, even if it's just walking. Here we have trails, we have nice neighborhoods and parks. Get out, even in the fresh air. It can be cold and windy, but you get your exercise when it's windy here!
