Inside Dementia Care: Debbie Selsavage Shares Her Mission

 Inside Dementia Care: Debbie Selsavage Shares Her Mission

Navigating Dementia with Debbie Selsavage: Guidance and Support

In this episode of Open Forum in The Villages, Florida, host Mike Roth interviews Debbie Selsavage, President of Coping with Dementia, LLC. Debbie shares her personal experience as a caregiver for her husband, Albert, who had dementia, and explains the challenges and lack of resources available. After Albert's passing, Debbie became a certified assisted living administrator and launched her company to educate, train, and support families and individuals dealing with dementia. The discussion covers a range of topics including coping strategies, the importance of education, proper medication management, and the use of music to improve the quality of life for people with dementia. Debbie also highlights her involvement in crisis intervention training and her mission to change the way dementia care is approached in the community. The episode closes with information on how to access Debbie’s books and services for further support.

00:00 Introduction to Open Forum Season Seven
00:25 Meet Debbie Selsavage: Coping with Dementia
00:35 Debbie's Personal Journey with Dementia
01:47 Challenges and Solutions in Dementia Care
04:20 The Role of Tepa Snow in Dementia Care
07:52 Firearms and Dementia: A Critical Discussion
13:57 Workshops and Community Education
16:46 Personal Stories and Client Experiences
20:08 Understanding Dementia and Alzheimer's
23:37 The Power of Music in Dementia Care
26:04 Resources and Contact Information
26:56 Closing Remarks and Supporter Shoutouts

Have you heard about mature adults with Donna Hoover and Mike Roth? Yes. This is my second podcast and Donna and I are going to be addressing subjects which are significant for seniors, especially seniors living here in the villages.

The easiest way to hear the show is to look it up on Apple Podcasts. Look for mature adults with Donna and Mike. We'll be looking for you there. 

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Transcript

Inside Dementia Care: Debbie Selsavage Shares Her Mission

[00:00:00] Nancy: Welcome to Season seven of Open Forum in The Villages of Florida. In this show, we talk to leaders of clubs and interesting folks who live in and around The Villages. We also talk to people who have information vital to seniors. You will get perspectives of what is happening in The Villages, Florida area.

We are a listener supported podcast. There will be shout outs for supporters.

[00:00:22] Mike Roth: This is Mike Roth on open Forum in The Villages, Florida. Today I am here 

Debbie Selsavage. She's the president of Coping with Dementia, LLC. Thanks for joining me, Debbie. 

[00:00:34] Debbie Selsavage: Thanks for asking me. 

[00:00:35] Mike Roth: Debbie was a caregiver for her husband who passed away with dementia Like many others, in her situation, she found it almost impossible to find information, support, and resources to deal with her difficult and exhausting task. She believed there's gotta be a better way after her husband Albert passed away.

Debbie entered the field of memory care. In 2012, she became a certified assisted living administrator Today she's an independent, certified trainer and consultant with Tepa Snow .

She launched coping with dementia, company aimed at educating training and bringing awareness and support to the community of Alzheimer's and dementia. Her mission is to make life better for individuals and families with dementia. Debbie is a author.

How many books have you written?

[00:01:30] Debbie Delsavage: Maybe five. 

[00:01:30] Mike Roth: Today, in your own words, why don't you tell our listeners what you do for families dealing with a loved one.

[00:01:38] Debbie Delsavage: I was a caregiver for my husband Albert, from 2004 to about 2010. I was working full time and the resources were very limited. How do you deal with situations of possible aggression? What do you deal with for wandering?

What do you deal with just in general? Caregiver. Burnout. I didn't have those resources. After he passed, I had not a great time in placement in my caregiving role that didn't work out so well. So when we created the company with my partner Ed in 2014, we were looking for.

Resources to make that journey better. A journey living with dementia is probably about eight to 12 years. That's a very long time. 

[00:02:26] Mike Roth: you said you were working full time. What kind of work did you do? 

[00:02:29] Debbie Delsavage: I was working for the City of Inverness at that time, and he was retired, so I was about 22 years his junior.

I was going to work, but our folks with dementia sometimes lose the ability of time, so he'd forgotten how long I was gone, at that time we didn't have many. Props to be able to locate them. I had a bracelet on and the deputies brought him back several times, but once they a wander risk or an elopement risk, as they say, they'll do it over and over again.

[00:02:59] Mike Roth: Elopement 

[00:03:00] Debbie Delsavage: meaning, I'm gonna walk outside the house. Because he lost the ability of knowing how long I was gone. He had no language, and that goes back to certain types of dementias. He had a bike fall, a bike accident. And damage to the left side of his brain, which houses our language.

So he couldn't say his name, he couldn't tell people where he lived. He had it on the bracelet. the deputies brought him home. By the time the third time happened, he was probably almost a mile from the house. So permanent placement had to be done. There was a lot of unskilled caregivers professionally that said that they would be able to care for him and couldn't.

So in the professional arena, he was not treated as well as he should have. When he finally passed, I did have four months of a person that truly showed compassionate. Person centered care, which is now what I'm professionally trained in person centered positive approach to care for people living with dementia.

I'm a certified dementia practitioner, along with being an administrator. Once I had that experience of something that wasn't skilled and someone who was skilled. It showed me what can be done for those with dementia. 

[00:04:19] Mike Roth: A couple of questions have hit my mind. Many of our listeners might not know what Tepa Snow is.

[00:04:24] Debbie Selsavage: Tepa Snow is from North Carolina. She has 40 years in this career of dementia. She was an occupational therapist. She saw that people with dementia are there. We need to learn how to cue them. We need to help them with their sequencing to be able to do their task of daily living, which they can for a very long time.

I had been certified with her for probably about 12 years. So that was one of the first certifications I took to learn that we can't treat people with dementia the same way 

that we treat others and some of those things are, most people with dementia don't think the same way that we do. We're sitting here logically having a conversation, but with people with dementia, they're looking at how things make me feel. So it's all about building that relationship that really works. 

[00:05:16] Mike Roth: You said that there were people who said that they had experience or could handle people with dementia and couldn't. Was that in a professional memory care unit? 

[00:05:26] Debbie Delsavage: It was .

[00:05:27] Mike Roth: Really 

[00:05:27] Debbie Delsavage: In our hometown of Citrus County, he was asked to leave, was kicked three assisted livings. One of those was another part of what I deal with in the past 14 years is the Baker Act system, where we have now created a situation of this person being.

Labeled as a danger to himself and to others, which was untrue. But he was put into the Baker Act system twice and that is not a great way to treat a person living with dementia. So we're doing something very different in Citrus County now because of my interaction with the mental health providers.

Because of my interactions with deputies. I do crisis intervention training so that they have awareness of this is not a domestic, this is truly a dementia environment that walking into. 

[00:06:22] Mike Roth: Could you put notes into your husband's clothing in case he walked out a police officer might be able to read and understand who he was dealing with.

[00:06:31] Debbie Delsavage: At that point, they only had bracelets, He had a bracelet that stated that he did have memory issues. And it was registered through our Citrus County Sheriff's office.

Sometimes they look at that and sometimes they didn't. We have to educate everybody on this. Education is probably the hardest part of this journey of dementia educating people on what to do and how to do it. They can have a good quality of life. 

[00:06:57] Mike Roth: Did you have trouble with them not understanding how to deal with a person with dementia? 

[00:07:01] Debbie Delsavage: I didn't involve myself with in-home care. I started with a day program to have him in a secured environment in assisted living while I was working in then picking him up, eventually, because he was 21 years in the Navy, I could get some benefits for him if I permanently placed him as a resident. So I did that the last year. It didn't work out because of the Baker Act system, the labeling they had done because of the stay in hospitals in mental health

situation. I now had to find someone that would take him and it was about an hour and a half from home. But somebody did. And it was a very good experience for me because that's why I do what I do now, to educate people, how you can understand, have a better understanding of what's happening.

We talked earlier about memory. And I know you mentioned one of the books that we have is a dementia and firearms book that created your eyes to open up. 

[00:08:01] Mike Roth: Wow. You brought that in and I said, uhoh, this is something I didn't ever think about. We had so many people here in The Villages with firearms.

Many of whom have firearms training. and we also have many people in The Villages who developed dementia one man in shape or form. 

[00:08:19] Debbie Delsavage: in this case, it is about short term memory. It is about the time where maybe your husband or wife says, I'm gonna go next door and talk to Sherry and have a cup of coffee.

Most people with firearms know that they are for safety protection and hunting. What happens in the situation of short term memory is forgot that? Husband or wife went next door they're protecting their in the house, and the firearm becomes that protection.

It's not that they mean to cause any harm, most people with firearms are not there to shoot others. They're there for those particular reasons. 

[00:08:58] Mike Roth: In a case where someone has dementia, should the domestic partner put the firearm under lock and key and not give the key or the combination to the person with dementia? 

[00:09:10] Debbie Delsavage: That's a good way to protect it, a lot of times as we get older, we collect guns. We don't replace 'em like a vehicle. That's a really good suggestion. We're not here to take the guns away, but it's also a good education for that partner to know how to handle them and maybe get some snap caps or bullets that look like bullets, but not bullets.

And still have them available so that our person. Knows that it's there. It's a safety measure. What the options are. Sometimes our folks will gift them away to their family members, so let's think about gifting them away a little bit sooner so that you can teach them.

That's giving that person with dementia. A purpose to show them how to maintain them. 

[00:09:57] Mike Roth: So how do you educate the public? 

[00:10:00] Debbie Delsavage: it's way more than memory issues, having a gun in the house or having a car in the garage. It's about short term memory, it about getting lost, going to familiar places. It's about making rational choices.

Probably some of the biggest things that happen to us in the country now is fraud and scams. So now we have people that have accessibility to a cell phone. And how many potential spam calls do we get in a day? One of those times a person with dementia may pick that phone up and they're looking for their license number or they're looking for social security number.

I am astounded with how many people have their social security numbers in their wallets, It could be any number of things that they're doing. But also good judgment. We have a lot of people that donate to nonprofits when they donate how many other envelopes do you get in the mail once you've done it?

[00:10:59] Mike Roth: They resell the list. Correct. And then there are data brokers on the internet. That make it worse. 

[00:11:04] Debbie Delsavage: Now what happens is. they think they're bills, so they keep sending more money. And pretty soon have thousands of dollars gone to nonprofits and the list just grows.

 So they don't have any rational thinking skills, they don't have any safety awareness. They lose that ability to know what's right or wrong. They wanna build the relationship and they want to be with that person. And please that person. if they're asking them things that are very easy to give 'em, then I'm gonna give 'em 

[00:11:36] Mike Roth: Okay, I understand.

Let's take a short break and listen to an Alzheimer's tip from Dr. Craig Curtis.

[00:11:43] Dr. Craig Curtis: Amyloid is the spark, and tau is the fire. We have this spark barking for 20 years without symptoms. Once the spark causes the fire, the breakdown of tau inside the cell, we start to see symptoms. We are actively researching ways to stop tau as well. 

[00:12:00] Mike Roth: Is it possible to regrow new brain cells to replace the ones the tower was killed?

[00:12:05] Dr. Craig Curtis: That's a hot topic. Scientists for the most part, do not believe that we can regenerate any brain cells. There have been a few research papers published in the last four or five years that hint that there might be some brain cell regeneration specifically in a part of the brain called the hippocampus, which ironically is where Alzheimer's disease starts.

But it's really hard to prove that in humans.

[00:12:31] Warren: With over 20 years of experience studying brain health, Dr. Curtis's goal is to educate the village's community on how to live a longer, healthier life. To learn more, visit his website, craigcurtismd.com, or call 3 5 2 5 0 0 5 2 5 2 to attend a free seminar.

[00:12:47] Mike Roth: Thank you, Dr. Curtis. Debbie why did you create a company for this Alzheimer's education? 

[00:12:54] Debbie Delsavage: In 2010, after Albert had passed away, I got into the health field, became an administrator, understood that there is clearly a better way to. Interact with those folks living with dementia. You can educate the families on what is expected, what to do when they get there, so that their visits are going to be much better.

I met a new partner, Ed Youngblood in about 2013, and he could see that I was getting burnt out, trying to educate and create a better environment. he said, why don't we start a company and educate people? We created it and our main objective is to work with the lay caregivers. We are seeing a lot of people that are having issues that can be solved. So when Ed and I created the company, it transitioned into educating the caregivers that might have to use those long-term care communities or use a home health company.

Let's give them the tools to be more informed about what they're looking for. We do that with workshops. That's a two hour workshop that educates them on the symptoms and characteristics with the positive approach to care.

Is that a workshop 

[00:14:09] Mike Roth: that's done live in a hotel ballroom or something? 

[00:14:12] Debbie Delsavage: It's in person. Primarily we go to libraries because that's a safe place. Nobody's gonna sell them anything. And we do it in probably four or five counties. We go to their libraries. 

[00:14:23] Mike Roth: Do you charge for those seminars?

[00:14:25] Debbie Delsavage: No. No sir. 

[00:14:26] Mike Roth: So how do you guys make a living at it? 

[00:14:28] Debbie Delsavage: I partner with two research companies. And research is one of the things that we're not looking at in the whole picture of Alzheimer's and dementia when we're going through the journey.

I bring the two research companies in the geographic area. So if I'm in The Villages, I bring Charter in and they have a few minutes to talk to them. About the studies they have or the opportunities of studies and what we can do, they also offer. Free memory evaluations, that's a big deal because in your population right now that feel they're gonna get dementia, they'd like to know what's the baseline, what am I having those problems, it's very different than normal aging.

So offering free memory screening, so they pay me to be there. 

[00:15:18] Mike Roth: Why do you do what you do? 

[00:15:20] Debbie Delsavage: I know what I felt like being lost, not knowing that sometimes the professionals were the way to be able to care for my person. Taking personally the curse words or what people would call aggression. I didn't know any of that. So now I can go in and assess a situation.

I do one-on-one counseling or guidance, I'll go into some families and observe what's going on, help them not criticize them, help them that maybe we can do it differently. 

[00:15:56] Mike Roth: So these are families who have chosen to keep their loved one with dementia at home.

And you go in as a counselor. 

[00:16:02] Debbie Delsavage: If the assisted living or long-term care, nursing homes are having difficulties, let's see what's causing the problem. We always look as a society that this is the problem, but we have to look at what caused us to get here.

Because if we don't, as a caregiver change, we're always going to see this situation and the person that gets. Punished is usually the person with dementia, either by medications or like in my case, not being able to stay there any longer. 

[00:16:35] Debbie Selsavage: And you need support. People don't 

want to 

admit that they need support or help. They think that's weak or they can't handle it. But this is 24/7 

[00:16:45] Mike Roth: How do you make a difference in your client's lives? 

[00:16:48] Debbie Delsavage: I'll give you an example of someone I went to meet with last week. His wife has been diagnosed with dementia. He told me he was concerned about himself and he asked if I would come and talk with him. So I did. When I went there, he had to admit to me that he didn't remember calling me. He doesn't know how he got my number. I came inobserved some things and knew that they definitely needed some outside help. He could do a lot of things, but he needed some outside support.

I said to him, give me a week, and in fact I'm meeting him tomorrow, he looked at me and said, you're just an angel. Where did you come from? I said you don't have that answer. I don't have that answer. I just want them to be able to look at their person and know that their person is living with dementia.

They're not meaning to do the things that they are. I wanna give you back your person. Because they're in there. 

[00:17:46] Mike Roth:  Debbie how much does it cost to bring someone like you in for personal assistance to help in consulting?

[00:17:53] Debbie Delsavage: It's very minimal. $75 an hour. It usually takes about two hours for me to figure out what's going on. It may be medication, it may be a lot of things, but I can figure out, and most often when people are in a crisis, it's because they don't know what the resources are out there.

Okay so by you having information out there, they could make a phone call What's the resource? Who do I have here? What can I do? 

[00:18:21] Mike Roth: So you said medication and you have a lot of clients. On average, how many medications are these clients on each one? I'm 

[00:18:28] Debbie Delsavage: gonna say an average of 15 to 20. So there can be up to some that I've seen that are 35. And some that are very minimal. 

The medications they prescribe for forms of dementia.

Were not even designed for that. It was designed for bipolar and schizophrenia. 

So these are primarily psychotropic meds. 

They're not used to change the disease.

They're not used to necessarily slow down the disease. They're used to mask the symptoms making it easier for the care partners to redirect them. But psychotropic meds have a lot of side effects That could be detrimental to them. So

[00:19:10] Mike Roth: would suicide be a side effect?

[00:19:13] Debbie Delsavage: It was a couple of years ago where a gentleman was. In the service. His wife was in assisted living because we didn't really educate that person. He took a lot of things personally with what she was saying, and he did bring a gun in and shoot her and him.

People living with dementia are aware of something changing and they don't want to be a burden. We have to educate the families and the person with dementia. I meet a lot of people living with dementia.

They're not excluded from anything I do. Any workshop. Any conference we've done for 12 years and people with dementia are welcome. We make that environment okay for them, and 

they're aware the promise they made to their husband or wife is not something they can fulfill till the end of their. Days. So we have to make them understand we'll find something different for them. Everybody wants a purpose. 

[00:20:10] Mike Roth: Between dementia and Alzheimer's disease? 

[00:20:13] Debbie Delsavage: Dementia is not a diagnosis. It is an umbrella term of symptoms, short term memory, way finding, getting lost, going to familiar places, logical thinking, rational thinking, good judgment.

One of those symptoms we didn't mention is combative and aggressiveness. It happen in the journey. But it's not necessarily a symptom. The actual disease underneath this umbrella is Alzheimer's. Underneath that umbrella is about 125 types and forms of dementias to date. Vascular dementia, Lewy body, Parkinson's front, temporal dementia.

[00:20:52] Mike Roth: Robin Williams, was misdiagnosed for many years. 

[00:20:54] Debbie Delsavage: Lewy Body. And now Bruce Willis with front temporal dementia 

Created the aphasia. So he has no language. So many types of dementias are going to affect different people. When you meet someone that has a form of dementia, you've met a person with dementia. you could have a vascular dementia and I could have a vascular dementia, but we're going to interact very differently.

 If your person was a type A personality, if your person was we usually look at the people that were engineers and that's the nurses. 

[00:21:28] Mike Roth: I had a friend who was diagnosed with aphasia. Trouble with words. I watched him over a couple of years. In the beginning it was only one or two words. He couldn't get out. And then he went off the deep lost his driver's license, wound up a memory care unit.

And I went to visit him there. And there were times I was with him that he was perfectly lucid. And then there were other times where he had minor difficulties and other times where he became aggressive, but in his regular life before that, I wouldn't. Call him lovingly Bullwinkle moose.

Or Mr. Know-it-all? Correct. He was A type A personality 

[00:22:03] Debbie Delsavage: Boy, they're tough 

[00:22:03] Mike Roth: He knew everything about everything and everyone else was wrong. And he could prove it 

[00:22:07] Debbie Delsavage: So when you see something that you might not have liked so much before dementia, we say it's like being on steroids after dementia because it does get worse, Our left side of our brain houses our language, and that's usually damaged early. When I can't get the words out, I can actually see the word, but I can't retrieve it. That creates frustration.

My amygdala gets all excited and I'm now on defensive because I can't get the words out. 

What we don't focus on is what's in the right side of our brain. The right side of our brain is. Creativity, it's music, it's rhythm. But when I am frustrated and I can't get the words from the left side of my brain, I go directly over to the right side of my brain and that houses all of the bad words and language and ethnic racial problems when you hear a person start to curse, when I can't get that word, 

Hamburger. you're not understanding me. I may go over to the right side of my brain and pull out a curse word. Now, if I've never cursed before and you've never heard me curse and raise my voice, would that be something that you would say would be aggressive behavior? 

[00:23:24] Mike Roth: In my grandmother's case, I said it was very abnormal that it made me uncomfortable.

Yeah. 

[00:23:29] Debbie Delsavage: So that's a different way of placing it versus saying that they're aggressive. They're truly frustrated. 

They're looking at the mirror, seeing someone that shouldn't be in this state. 

[00:23:38] Mike Roth: Why don't you tell our listeners a little bit about music

[00:23:41] Debbie Delsavage: Music is embedded in your brain between eight and 20, 

'cause that's not what I was playing when I was eight years old and 20. So taking a person that might be 80, you're going back 50 years, or you're going back to a time where it's great music, But music is embedded in our brain in many different places. music is one of the most profound. Ways that we can change the environment, change a person's mood and calm them down. 

[00:24:10] Mike Roth: Caregivers should be using music That was around when the person under care was around 20 years of age. 

[00:24:18] Debbie Delsavage: Yeah. imagine playing the fifties again, or something from the sixties, 

[00:24:22] Mike Roth: Absolutely. Here in The Villages. they have channels, for sixties, seventies, 

Eighties, Nineties. 

[00:24:26] Debbie Delsavage: And that's stuff you wanna look at. My husband Albert loved classical. So when we travel, it really is an absolute wonderful . way that we can keep those folks calm in their seat without playing with the door handles or the glove box.

I 

put the iPod on him and he listened to classical music the whole time and we didn't have a problem traveling at all. he was in a zone. That was comfortable for him. 

[00:24:56] Mike Roth: It brought back positive memories. 

[00:24:57] Debbie Delsavage: It was comforting to him, right?

It was. People with dementia, can't express the fact that they're hot or cold. But what if you needed to use the restroom? And I couldn't say it. That becomes frustration. It becomes what we see a behavior. I look at all behaviors telling me a story.

They're a way of communicating. 

And so when we use music, there's different times of the day that we use music. Like we don't want to use music that makes me sing or want to get up and dance when we're dining. But we don't wanna use upbeat music maybe when we're getting ready for bed.

So we wanna use music in different avenues, and if it gets to be where they're too stimulating with the music, then we do no lyrics. And do instrumental There's some wonderful videos about what music does. It creates language that they didn't have. I've seen people that are in wheelchairs that can't walk and talk and they can be dancing and singing.

It's the rhythm, so I don't look at a person at what they're losing. I'm looking at what do they have left? Because that's how I can work with them, 

[00:26:03] Mike Roth: and that's a very positive way to look at it. If someone wanted to get a hold of your books, how do they do that? 

[00:26:08] Debbie Delsavage: We are on Amazon. You can just put in my name as an author, Debbie, Selsavage at . Deb@coping.Today, or even call me. I'll put some in the mail and get them out to people. 

[00:26:21] Mike Roth: How do they call you? What's your phone number? 

[00:26:22] Debbie Delsavage: 352 422-3663. Our gun books are in local gun stores. They go to all our deputies when they go through crisis intervention training.

We get any kind of first responder book, so we're doing education for them so that as a community, people don't fall through the cracks. When you said I was an author, we started in about 2014, we went to our local paper, the Citrus Chronicle, and we have had an article since then.

Called Coping with Dementia. 

[00:26:52] Mike Roth: You have a website too. 

[00:26:53] Debbie Delsavage: Coping.Today?

[00:26:54] Mike Roth: Debbie, thanks for being with us today on Open Forum in The Villages, Florida. I'm sure our listeners would be trying to find your books or picking up the phone and giving you a call. 

[00:27:02] Debbie Delsavage: I appreciate your time to let me come over and talk to you about dementia. 

[00:27:06] Mike Roth: Thanks a lot. 

Listeners, I'm thrilled to share with you this podcast, which is my passion project, to bring knowledge, inspiration, and things you need to know about the villages and the people living here. Be sure to hit the follow button to get the newest episode each week, or you can hit the purple supporter box.

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[00:27:44] Dolores: Remember, our next episode will be released next Friday at 9:00 AM Should you wanna become a major supporter of the show or have questions, please contact us at mike@rothvoice.com. This is a shout out for supporters, Tweet Coleman, Ed Williams, Duane Roemmich, and Dr. Craig Curtis at K 2 in The Villages. We will be hearing more from Dr. Curtis with short Alzheimer's tips each week. If you know someone who should be on the show, contact us at mike@rothvoice.com. The way our show grows is with your help. Text your friends about this show if you enjoyed listening or just tell your friends about the show. We thank everyone for listening.  

[00:28:24] Dolores: The content of the show is copyrighted by Roth Voice 2025, all rights reserved.