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Today my guest is Scott Tolan, he joined Open Arms in August 2019 as the Dementia Program Director. Prior to Open Arms, Scott has held various positions in the aging field including work in home care, assisted living and skilled nursing, case management, and adult protective services. His dementia experience includes leading different dementia residences on both the assisted living and skilled nursing sides. Scott enjoys providing education and assistance to clients and their families as they navigate the journey of dementia.
He has a passion for serving seniors with dementia and assisting them and their loved ones navigate the journey of the disease process while helping them maintain the best quality of life possible.
Hanh Brown: [00:00:00] Today. Scott Tolan joined the open arms in 2019 as the dementia program director. He has served in the older adult in-home care, assisted living, skilled nursing case management and adult protective services. It is his passion to help families and loved ones as they navigate the journey of dementia.
[00:01:36] Hi Scott, very nice to connect with you today. So can you start off by telling me a little bit about your journey and how you got started into dementia care and caring for the baby boomers?Scott Tolan: [00:01:47] Absolutely. So my journey is like a lot of folks, fairly lengthy one into the aging field. But my experience with older adults growing up really made me very interested in working with seniors as an adult.
[00:02:04] And I actually started out in the marketing research fields, got a master’s degree in gerontology and eventually gravitated, full time into work. With older adults. My interest has always been and personal passion has always been working with individuals with dementia specifically, and I’ve had the opportunity now to do that on several fronts, I’ve run several different dementia, residences or floors. [00:02:36] And have worked with various other dementia clients over the years. And my current role is as the memory care program director at open arms solutions home care, which has based in North Brookdale, Illinois, just outside of Chicago.Hanh Brown: [00:02:53] That’s great. So let’s look at dementia, 2020 and beyond what is your take on the current state of affairs?
[00:02:59] As far as dementia research and program development is concerned.Scott Tolan: [00:03:04] So there are numerous studies still being conducted right now in the area of dementia. A lot of the research historically has been based around some kind of set concepts, things like plaques and tangles and people’s brains as a cause of Alzheimer’s.
[00:03:22] A lot of money has been put into that research and unfortunately, over a number of years, There has not been significant progress made in addressing dementia. So a lot of the research focus now is taken off of that and is being placed. Other areas such as the role of diet. For example, as a preventative measure.[00:03:48] And other aspects of people’s lifestyles that can kind of be singled out if you will, and pinpointed to provide early detection of possible memory impairment.
Hanh Brown: [00:04:01] Yeah. Lifestyle is huge. We’re talking in terms of slowing down, deferring dementia, as long as possible lifestyle is the biggest contributing factor in it consists of many components.
[00:04:13] Your food choices exercise can reduce your stress.Scott Tolan: [00:04:16] stress. Absolutely keeping things like not smoking, keeping alcohol consumption, if you drank into fairly moderate levels. So all of those factors definitely play into And social engagement, more there’s a recognition that social engagement does play a significant role.
[00:04:36] People who tend to have even just a few closer contacts with whom they communicate on a regular basis is much better than someone who is more isolated and basically just to him or herself.Hanh Brown: [00:04:50] Yeah. I wholeheartedly believe that we are humans and we need not only the technology interaction, but very much we need that face-to-face physical contact.
Scott Tolan: [00:05:04] You know that nowadays we’re very limited to that’s particularly relevant right now. Because in the general public, we’re already being physically distanced or isolated. And then you add dementia on top of that, particularly people in long-term care or memory impairment communities. And that becomes as we’ve seen in various reports, a huge,
Hanh Brown: [00:05:24] yeah.
[00:05:25] And as the world reopened folks in nursing home will slowly ease into the reopening with much caution. For the rest of the world as you and I were easing into socialization before the elderly is going to be a much longer.Scott Tolan: [00:05:42] Yeah. That’s definitely what we’re finding in terms of working with our long-term care communities on the home care side is that we have no sense of when our personnel, I mean, we do have caregivers that go into those buildings, but aside from that, when our other personnel will be able to go in, is anybody’s guess at this point.
Hanh Brown: [00:06:01] Right. You know, we touched a little bit on the impact of COVID that will have on dementia. So, what do you see as possible future impact of Corona virus as it relates to dementia?
Scott Tolan: [00:06:12] Yeah, that’s a very, very good question. I think the overall concern, and I’ve been talking with some of my colleagues and dementia professionals about this.
[00:06:21] I think the overall concern as always in long-term care communities is infection control. And I think quite frankly, having worked in that side and in those communities before, I think that the number of communities were really understandably caught completely off guard, even though they do their best to provide that protection on an ongoing basis. [00:06:46] I think with COVID they were just taken completely off guard. And then you magnify the problem with the PPE shortages and things like that. So going forward, long-term really, I suspect that there will be a lot more focus through our governmental regulatory agencies that oversee the long-term care industry, that they will likely place a lot more focus on infection control going forward. [00:07:13] And, you know, it’s very difficult from the consideration of people with dementia, because if they’re living together, they don’t necessarily understand the implications of COVID and most likely don’t. And so to keep them isolated somehow or away from each other, I think is going to be highly impractical. [00:07:34] So we’ve got to find a means for through infection control or otherwise. Through just making sure they’re as safe as we possibly can.Hanh Brown: [00:07:43] I agree, depending on what stage of dementia the one is in, it can be very difficult to get them to eat, let alone understand the concept of COVID.
Scott Tolan: [00:07:55] Let me add, I mean, I have tremendous respect for my colleagues professionals out in the field who are working in those long-term care communities, because I really do believe that they were.
[00:08:06] Not receiving the attention and the focus that they should have, and that’s not to take anything away from the hospital personnel, but I am one of those people who believe that kind of the underappreciated people, at least initially were those in those long-term care communities. And so the work that they do and will continue to do is, is of utmost importance to all of us really.Hanh Brown: [00:08:31] Absolutely hats off to them. It’s a shame because I think the industry faces three key challenges. One of which is to keep the residents and the staff safe from COVID. And the second is the financial stability. When they have to pay exorbitant prices to get the PPEs and the testing equipment, some of them are marked up to a hundred percent or more in the PPE were not as available to senior living as they were to hospitals.
[00:08:58] So it’s more difficult to move in new residents, which certainly will hurt the revenue. And then of course, the negative press around the long-term care facility. People who’ve had a bad experience at a skilled nursing and the use it experience and extrapolate that to be all of the care and housing for the rest of the industry. [00:09:18] So the press lumps, everything under senior housing into one category. I think it’s important that folks within the industry speak to each other, but I think it’s even more important that we educate folks outside the industry.Scott Tolan: [00:09:30] I too think you were asking me about what the future holds I’ve been talking to colleagues about.
[00:09:35] I think that a lot of research needs to be done after we hopefully stabilize the situation about why certain communities had such high death rates. Relative to other communities that were able to contain COVID. So I think we’ll learn a lot if we can get some really good quality studies looking at the differentials between various communities and why rates varied so tremendously.Hanh Brown: [00:10:04] Very true. I think we need to think about the variation in the test results, faulty of the test in, and of course the availability. Because there are so many moving parts that you can’t really pinpoint or measure. And that’s why I believe the number of deaths should not be the only metric in measuring how well the senior living communities respond to the pandemic.
Scott Tolan: [00:10:27] That’s going to make those studies. Presumably when they come along, going to be very complicated to isolate those various factors. But. I really think we’re going to need to pick this apart, so to speak and figure out going forward. If we, I say yes, hopefully it’s a, if we ever have a situation in our lifetimes like this, again, we can be better prepared for dealing with it.
Hanh Brown: [00:10:51]Very true. Again, I just don’t believe in measuring success by the number of debts you hear that often. I believe it’s like 40% plus of deaths were linked to nursing homes. Yeah, it was about 40 plus percent. But my point is I wholeheartedly believe that death should not be the only metric in assessing how well the community responded to the pandemic.
[00:11:15] You could have two communities in the same region, following all the CDC guidelines and doing their very best to care for the residents. The one that follows the guideline, the strongest could have more deaths in the ones that didn’t have enough. PPE could somehow have less deaths.Scott Tolan: [00:11:32] Yes. And another factor that of course we have to take into account is the sickness of the individuals in those communities prior to COVID.
[00:11:41] So one community may have a relatively low situation where other people have other chronic issues. And another community may have people that were very much nearing the end of life anyway. So how do you factor that into those totals?Hanh Brown: [00:11:58] I think there are more that were COVID impacted as opposed to COVID because many of them, like you say already have some underlying health issues, compounding that with COVID is obviously not a good thing.
[00:12:12] It’s going to be an interesting study. So with regard to the role of home care in dementia, What is your take? What are some of the changes underway in home care services and for those with dementia?Scott Tolan: [00:12:24] Yeah. I appreciate you asking that. So I do think that the home care agencies as a rule will see a significant uptick.
[00:12:34] In client business. Having said that if I can sort of do a brief commercial here, if you will, for what we are doing at open arms, we are actually starting a specialized dementia based program for our clients called embrace. And we’re going to be starting at in about the next month. And that really focuses on the individual as what we refer to as sort of the whole person, a lot of home care work historically has been very task-based. [00:13:07] If you will. In other words, home care person is in the home to provide help with those activities of daily living that we think about bathing, grooming, dressing, and making sure those get done, which are very important. But what we really have recognized is that that’s not looking at the person, as I said earlier as a whole person. [00:13:30] So we want to focus on other aspects of that person’s life, such as the engagements or activities that he or she may have been involved with over time and really continue to. Keep them as purpose driven if you will, in their life as possible. So we’re very excited about this and I think other home care agencies, especially with the increasing levels of dementia we see will likely sort of take that man all up as well.Hanh Brown: [00:14:02] I see, So what services come with the home care agency? Is it 24 seven care?
Scott Tolan: [00:14:07] Our agency is focused on a wide variety of care. We right now, honestly, because of COVID are limiting our minimum hours to eight hours per day. But in the past, prior to COVID, we would even be able to provide services at two and four hour increments, whether we’ll be able to get back to that.
[00:14:28] I don’t know, but oftentimes we have, like I say, eight hour a day shifts, sometimes 12 hour a day shifts, or in some cases we provide live in services as well. So. It really runs the gamut based on what the needs are.Hanh Brown: [00:14:44] And how is it covered in terms of Medicaid and Medicare?
Scott Tolan: [00:14:47] Yeah. Unfortunately, private home care services typically are not covered.
[00:14:54] By Medicaid or Medicare, I will tell you having worked in a previous program, that there are what are referred to as Medicaid waiver programs in the various States that do provide home care services at the person qualifies. But typically people, if they need home care services are paying for it out of pocket.Hanh Brown: [00:15:16] Right? Okay. So let’s talk about the techniques use well, working with those with dementia in terms of communicating and relating to them. How are your associates engaging with the residents in your home?
Scott Tolan: [00:15:31] Good question. So, one of the things that I’m doing right now to prepare for our new embrace program is training caregivers specifically in the area of dementia.
[00:15:42] And as you say, communication is a big part of that. There are a couple techniques which actually individuals can use as well that we are practicing or using right now. One of those is called the technique of validation, which is basically an opportunity to provide reassurance and reaffirmation to people with dementia. [00:16:06] So let me give you an example. One situation that someone with dementia may express is the need to, for example, see their mother. And we recognize that most likely that person’s mother has been gone for some time. So they may use a repetitive behavior. Like I want to see my mother. I want to see my mother. [00:16:27] I want to see my mother. Now in the traditional training, people or caregivers specifically were taught, you can try and basically change the subject. Or you can essentially tell us what’s called a therapeutic lie to the person. And say, Oh, well, your mom will be here in a little bit. She’ll be here in a little bit. [00:16:50] And the problem with that is even someone in somewhat more advanced stages of dementia, ultimately may realize that that’s not the case. They may come to the realization that their mother no longer insists. And what that does is it breaks that trust relationship between for example, the caregiver and the person with dementia. [00:17:11] So validation is really a better way of addressing that. So if the person says, I want to see my mother, I want to see my mother. I want to see my mother, you paraphrase and you say, yes, I’m sure you do want to see your mother. And then you use the word and, and say something along the lines of, and why don’t you tell me about your mother? [00:17:33] What is most important to you about her? So the idea is that you’re continuing the conversation. You’re not lying to the person and you’re allowing an opportunity to kind of redirect them in a positive way. So that’s one example of a communication technique, then not just caregivers, but others can use as well.Hanh Brown: [00:17:51] I think too often, we don’t know how we should respond and it’s just easier to come up with something to fabricate something. But ultimately you’re somewhat lying because they might not be aware that it’s a lie. I think what’s most important is that you give them affirmation and validation. So it would be like, Hey, you know what?
[00:18:12] I’m sure that you want to see that person. Yes. But what is it about the person that you miss? What is it that you want to do with that person? When you see them? So, what you’re doing is you roll along with a story. And I think that’s really important as a family. There’s 10 of us in, we all had to learn how to communicate with my mom, who was a very painful process. [00:18:33] Ultimately, we learned that we should never correct my mom and that we had to roll with her stories and encourage her to speak further. You gotta be in the moment to enjoy her because often there is no logic, rhyme or reason it just is. And you have to accept that.Scott Tolan: [00:18:51] That’s correct. And that’s a great story.
[00:18:54] So I just want to add one other technique to that. I think your audience here will appreciate one of the other techniques that’s been popularized. Now, if you will, in the dementia field over, maybe the last five to 10 years is actually pulling in some techniques from improv theater or improv comedy troupes. [00:19:15] Here in Chicago. We have second city, which is naturally known, I think. And we’re finding that caregivers who understand those concepts of improv really, really work much better with individuals with dementia. So the idea is that you basically go with whatever the person says. There are several rules behind that. [00:19:38] But essentially you are continuing to add to the conversation, but just essentially going with whatever that person says. So if they say something that is wildly off the Mark, you act as though, and you communicate as though you understand completely, and you continue down that line until it’s no longer productive, and then you go down another line.Hanh Brown: [00:20:03] You just continue. You let their imagination go. As far as they want, they need help. In many regards in their world. It’s very limited in if there’s anything that allows them to go as far as they can, it’s their imagination. Although it might be disoriented at times, but you just have to let it go and just allow them to imagine, like I said, I have my own story and my own journey, having 10 people in our family.
[00:20:30] The dynamics sometimes will add to the problem. But I think overall as a family, you go through a process. You don’t know how to respond, you’re in denial. And then you go through all the wrong ways to go about it. And then you realize you end up crying and crying, and then you just accepted everyone in the family now has to see your loved one, whether it’s mom or dad, where they are and be in the moment. [00:20:53] And I really think that’s key. Be present and just appreciate that they’re still here.Scott Tolan: [00:20:59] That is excellent way to put it, meet people where they’re at. For sure.
Hanh Brown: [00:21:03] So let’s shift gear a little bit. So let’s talk about awareness of elderly abuse and neglect, especially for those with dementia. So can you give us some examples and how to detect that?
Scott Tolan: [00:21:15] Yeah. So prior to my work at open arms, as their memory care program director, I had an opportunity to. Work for an agency here in the Chicago land area that handles abuse and neglect cases. And so I saw firsthand with older adults, what they go through in those abuse type situations. And specifically those with dementia who are exposed to elder abuse.
[00:21:46] With elder abuse. I think of it almost like, and dementia, almost like two cars headed for a head-on collision. So you’ve got a situation where seniors with dementia living alone, which is anywhere from, I believe like a quarter to a third of people with dementia nationally, live alone, and then you’ve got this other car, had it toward dementia. [00:22:10] So you’ve really got a car wreck, major car wreck. If you can picture that there, where those two are colliding and they are just ripe for victimization from a variety of different sources. You know, the irony is however that most of users are actually people that the individual knows. So I think in almost maybe up to 60% of. [00:22:36] Elder abuse and neglect incidents. The perpetrator is a family member. And I think if I’ve got my figures right here, roughly two thirds of perpetrators are adult children or spouses, even though you think of that mythology of a lot of the elder abuse scams, which do occur coming from telephone, scammers or salespeople. [00:22:58] Who the person doesn’t know the reality is unfortunately that most of that abuse occurs among people. The individual does know. And so that’s why people with dementia are especially vulnerable to abuse and neglect,Hanh Brown: [00:23:12] and that can get very tricky. When does it become necessary for them to go into a community where they’re cared for by a licensed professional and that a monitored.
[00:23:22] So all of those are key components. No one can really make that decision. Other than the family members themselves, from my own mom, she stayed at home at my sister’s home, as long as she possibly could. And we’re all believers that you need to be in your own home as long as they are well cared for and provided and safe. [00:23:42] But there comes a time when it is unsafe. The doors are not always locked. And if you were in a community, you know, they have gate, the doors at home should be locked, but sometimes they still can unlock it. So there are some safety reasons where home might not be the safest anymore.Scott Tolan: [00:23:58] It is a very tough one. And that’s oftentimes where really helps to have professionals intervene. Whether that’s a private pay care manager, geriatric care manager, or even a home care agency coming in. Or in the case of someone who is suspected of being abused, even someone in the role that I played as an elder abuse worker who comes in and can help make an assessment about whether that person’s situation is safe at this point or not.
[00:24:30] And one of the roles that I played was to kind of assess that person’s situation and determine how their alternatives such as long-term care or other services that could be put in place that would make this person in a safer situation. Right.Hanh Brown: [00:24:46] So before we wrap this up, do you have any last comments to the audience?
Scott Tolan: [00:24:50] I guess I would just say, since we’re on the topic of elder abuse here, that I would encourage people who suspect cases of elder abuse and neglect either have a loved one or friend to search out information on the internet about their particular stay. And there usually is a number that you can call and make a report.
[00:25:14] If you feel that’s necessary. A lot of times, if you feel strongly enough, you can make the report anonymously. So your name never has to be attached to the report. Don’t worry about well, is it’s really a case of abuse or not let the investigator who handles that case, figure that out. So when in doubt, make a report, that is just the advice I would give to anybody out there because that’ll help protect our seniors who are most at risk.Hanh Brown: [00:25:44] Well, thank you so much. I appreciate you taking the time to share your wealth of knowledge. Yes. I think it’s important to raise awareness of dementia. Seriously people don’t think about it until they have to face it. And when they do, they spend a whole lot of time learning, maybe denying, and then it can be a very heart-wrenching process.
[00:26:06] So I think the sooner that you learn about it and have a brain healthy lifestyle and encourage your loved ones to do the same, but what I’m seeing is people do live longer and dementia is becoming more common. Well, thank you so much, Scott.Scott’s Links:
LinkedIn: https://www.linkedin.com/in/scott-tolan-79661196/
Open Arms Solutions: https://openarmssolutions.com/
