 Lakeland Currents, your public affairs program for North Central Minnesota, produced by Lakeland PBS with host Bethany Wesley. Production funding for Lakeland Currents is made possible by Bemidji Regional Airport, serving the region with daily flights to Minneapolis-Saint Paul International Airport for information available at memidjiairport.org. Closed captioning for Lakeland Currents is sponsored by Niswa Tax Service, tax preparation for businesses and individuals online at NiswaTax.com. Hello, welcome back to Lakeland Currents. I'm Bethany Wesley. There are more than 15 million Americans who provide unpaid care to people who have Alzheimer's disease or other dementias, according to statistics from the Alzheimer's Association. It is estimated that in 2016, those caregivers provided 18.2 billion hours of unpaid care, valued at more than $230 billion. Those figures are only expected to rise. The Alzheimer's Association reports that there are more than 5 million Americans living with Alzheimer's now, and that number could reach 16 million by 2050. In Bemidji, community members have been working in recent years to identify ways through which the greater region could become more dementia-friendly. Bemidji in 2014 was selected as one of the sites for Act on Alzheimer's, a statewide initiative that aims at better preparing the state for the impacts of Alzheimer's and dementias. Joining me for tonight's show are Carol Priest, the action team coordinator with Northwood's Caregivers, and Trisha Cowan, assistant professor of nursing at Bemidji State University, who has been doing her doctoral research project on Northwood's caregivers and Act on Alzheimer's. Together, we'll talk about what exactly Act on Alzheimer's is and how it is making a difference. Welcome. Thanks for coming. Thanks for having me. Thanks, Bethany. As we get started first, let's talk about dementia and Alzheimer's in general. We talked a little bit about these numbers rising nationally. Are they also rising then in the state as well? Yes. When we look at the state figures, one of the things that we talk about is that for people age 65 and older, one in nine people of that group has Alzheimer's or another type of dementia. For people 85 years and older, that number rises to one in three people. All of us all across the country, we're going to be experiencing an increase in the percentage of the population and the number of people who are 65 and older as the baby boomers age. That means an equivalent increase in the number of people living with dementia in our communities. When we talk about the number of people who have dementia or Alzheimer's, are those that are diagnosed or are those kind of based on general figures based on what they assume or where do those numbers come from? There are some assumptions in that. A lot of people who have signs of dementia are not diagnosed. In fact, some of the numbers from the Alzheimer's Association say that only 45% of people who have dementia have been told that by their doctors. One of the things that we are really emphasizing in Acton Alzheimer's is early diagnosis and treatment and supportive care. We want people to know what the 10 warning signs of dementia are and get in to see a doctor as soon as possible if they start seeing those. For one reason, because it may be something treatable, it may not be dementia. There's a lot of things that can look like that. But also then to get support for the person living with dementia and their caregivers as soon as possible. Is there something specific about dementia that is concerning more so obviously the numbers are going up. You're going to have an older population, so more people with it. But is there something about the care that they need or the care that they're getting or not getting that is concerning? Is there a reason that this in particular has a focus? There's a lot of things that people can do once they receive a diagnosis of Alzheimer's or another type of dementia. There are medications that can help to reduce the symptoms. It doesn't change the physical progression of the disease in a person's brain. And people have heard those names, Aricept, Namenda. There's a couple others that are being used. But even for people who choose not to use those medications, there's some things that are very important. And something that we see a lot of is that when a person is diagnosed with dementia, they start to isolate themselves. Because the symptoms and how it feels from inside can make it very uncomfortable for them to be in public places, in places where they would have socialized. And we still have a lot of stigma around dementia and Alzheimer's. And so the person and their caregiver may feel I don't know obvious or that's I'm not getting the right word. A little bit targeted or like this. Yeah, like people are looking at them funny. Okay. And if you think of 60% of the people with Alzheimer's, they're living at home still with support. And so they're in the community, they're going to the grocery store, they're going to the bank, they're going to the post office. So how do we support them where they are? So Act on Alzheimer's is a statewide initiative, correct? So who is administering it? Who kind of oversees it from a statewide perspective? There's a woman, Emily Farrah Miller, who is at the, what is it, the Metropolitan Area Agency on Aging. And she's the statewide coordinator for Act on Alzheimer's. But there are individual communities who have been part of this. There's about 35 communities in Minnesota who have applied and received funding to start this project. Interestingly enough, one of the first seven communities in the state was Walker. And so they started before we did. We applied for this grant in and received it in 2014, the initial grant from Act on Alzheimer's. So we were part of the second round of communities. And if I remember correctly, Walker was the only rural community, if I recall that correctly, from that first seven, but it's become a little bit more common now to reach out to the rural areas, correct? And if someone were to go on the Act on Alzheimer's website, there's a map that shows the distribution of communities around the state. And you know, it's considering population, it's pretty evenly distributed per capita throughout. So there's a lot of rural communities who have gotten involved in this. There's also cultural communities that have had started Act on Alzheimer's projects. One of the first ones was the St. Paul Neighborhood Churches, which was a coalition of African American churches. There's a Hispanic group in the cities that had an Act on Alzheimer's project. And there's been a Somalian group as well. So are you all able to share information back and forth and then learn from each other to see, I mean, what worked down there might not work here in vice versa. But is that an ongoing conversation? So working with Emily Farramiller out of the Metro Area Agency on Aging helps connect us and share those resources. And you just presented at a learning collaborative meeting, which they have those once or twice a year. Oh, okay. So people from all the different groups kind of come together. Okay, interesting. Share what they're doing. Take me back to 2014, Carol. Who first of all, who was asking for this? Who was it that was really driving this? Locally. I think at Northwood's caregivers, we provide in-home services for elders and people with disabilities. We do a lot of caregiver coaching. But we were working with a lot of people who were living with dementia and with their caregivers and seeing the stresses that are happening with those families. So you had seen people going through some difficulties while trying to go through this disease. Very difficult. Okay. And hearing about, like I was saying, ways that people have withdrawn from their communities because they feel conspicuous. And they feel people may not actually be placing the stigma on them, but they think it's there. Okay. And so we became aware of the grant opening with Act on Alzheimer's and applied for that. And so in May of 2014, we started in the four-step process that comprises Act on Alzheimer's. And at that time, our project was called Act on Alzheimer's Bemidji. So in the first step, we formed an action team. And that included people from more than what you would expect as the typical folks involved. Yes, elder service providers, healthcare providers. But also people from businesses, from banks, legal and financial planning, people from government agencies. Were these people you had to reach out to or that had their own, for whatever reason, personal interest, heard about it and got involved? Was it hard to drum up that kind of cross-section of support? Yes and no. We had some people that we reached out to initially who were our main supporters in getting the funding and becoming part of the action team. And that also included a woman living with Alzheimer's and her husband who was her caregiver. It is her caregiver still. And then some obvious places like adult day services of Bemidji where many people with dementia go for day support and care, Sanford Health Care, Calvary Lutheran Church. So we really reached out to faith communities as a place where people get support and have a sense of community. First National Bank, the 55 Connection Program, Linda Sten saying has been very active with us. Choice Therapy, one of their staff. So a lot of places, some not so obvious. So this was that first step, if I understand you correctly, this is when you started to form the team. So as you form this team and you start preparing for the assessment phase and moving forward, did you have set kind of expectations or goals as to what you were going to learn or were you guys wide open in terms of where this was going to lead you? We knew what our own thoughts were about it. We knew our estimation of what was available in the community and where the gaps were. But you never know how that's going to come out. So we did do an assessment with many different people in the community, businesses, organizations, about 30 different people with different, you know, different locations, compiled that information and analyzed it. And then in March of 2015, we had a community meeting over at Adult Day Services. And through that, we talked about what we found with the assessments and where the community wanted to go with that in terms of actual action steps for phase four. Okay. And now Tricia, I just want to kind of just pause for a second and tell me about how you got involved and at what stage in all this you kind of started to take an involvement as well? The, I believe all four phases were complete when I became involved. The action team was up and going and kind of in the community already working on initiatives to raise awareness. So I was connected with Carol through a colleague of mine. I was looking for a project to do with my doctoral research. And so I was connected with Carol and just talked about what the community needs and met with some people in the community and found that they really needed some education around dementia. Education was kind of the big focus from what you heard. Is that what you heard then as well then? Really, yes. What we focused on after the community meeting was education and awareness to get people in the community more familiar with what dementia really is and what maybe what people thought it was. And then support for caregivers and people living with dementia so that they can live as well as possible in the community and stay connected. Were you surprised at any kind of response from either those who were looking for more support or from business and community members who just wanted to learn more? Was there a good amount of people who took an interest in hearing not just during the action phase but during the action or not just during the assessment but during the action phase as you geared up to put things in motion? Yeah, we had a very, we had a sizeable group of people who were really involved. We had about 50 people at the community meeting and that really included a broad cross-section of folks and a lot of them proceeded on to stay involved with the action team through some of the things we were doing in terms of we had about 20 people who received training from the Alzheimer's Association in leading their two basic workshops. The first one is called the basics and it's you know simple things about dementia and Alzheimer's and then the second one is called know the 10 signs so the 10 warning signs of dementia. We developed a brochure originally it was labeled act on Alzheimer's Bemidji but the name has changed with time and with expanding our geographic area that we're looking at that compiles resources for people with dementia and Alzheimer's and the other idea behind this brochure is as much as it goes out to people in the community it's also something where if you get connected with one of the providers in here they will help connect you with everyone else that you may need so it's not like a person has to call every place to get a variety of resources. So you've been involved with Northwood Caregivers even before Act on Alzheimer's came so were there things that you learned either through the assessment or through the implantation of the actions that surprised you? I mean were there things about the community that you found gee I didn't know that we had a gap here? I think it was really it was a very good surprise that we really have a lot of services in Bemidji it's just a matter of getting people connected probably the biggest gap that we see is people realizing that they have these warning signs knowing the difference between what's normal aging and what is actually a sign of dementia which really has to do with with the disruption to someone's daily life all right I mean we all forget things a little more just like our bodies are becoming less flexible our minds are as well and I always say you know it's because there's so much in there by now you know so but for people to know when there's a good reason to be concerned and to go see their doctor and ask those questions even if they're afraid of the answers because the answers might be better than their worst fear okay and we've also come to I think the other piece of that then is as we moved the project out from Bemidji to a larger area including tribal communities we found how much the services don't go beyond Bemidji in many cases and how much of an issue transportation is for this population as well as many others so that you know there are some gaps that we have and we're doing what we can with that I want to talk a little bit about how that happened because you did initially start with Bemidji right and kind of that kind of focused on Bemidji at what point did you really realize you had to look beyond the city limits how did that come up I think that was that was always a goal okay act on Alzheimer's they encouraged us to stay small to start with you know until we got our feet wet and kind of knew what we were doing to limit it to like Bemidji and five miles around it starting January 1st of 2016 we received a dementia grant from the Minnesota Board on Aging which allowed us to greatly expand what we were doing in time both in terms of staff time and resources that we could make available to people at that point we began engage trying to engage people from other parts of the of the broader area so we worked quite a bit with the elder services at Minnesota Chippewa tribe which is host the Minnesota Indian Area Agency on Aging and also with Leech Lake elder services talking with folks at Red Lake with family and children services there and Red Lake Comprehensive Health Services and also in some of the smaller communities around our area um and so we renamed the project act on Alzheimer's Gawadinong Northland uh to represent that larger area and all the people in it okay so as you expanded your region you began kind of helping to really make sure we're reaching out to the tribes and including that population as well are the actions that were kind of put into or as you went through the plan does it splinter is it different for that for a different section or is it is it why is the actions across the greater region or are they targeted towards certain certain geographical images am i explaining that well okay i think it's so right now a lot of the the things that we do the basics the ten signs those are all really prescriptive so it's the same um same session that you offer whether it's in Red Lake or or in Bemidji or really anywhere else but we're working um to make some of those more culturally relevant for different populations so there's a lot of initiatives not just in the American Indian populations here up north but also with Hispanic communities and um West African communities and African American communities across the state oh okay so you're taking these trainings to people as well as just leaving them open and say come to Bemidji and come you're taking them to people as well right and how frequently are you doing those how how often are you going out we really do them as requested um when we had people trained in the Alzheimer's Association workshops that did include a number of people from Native American elder service providers um and so we've teamed with those folks to you know as part of our action team and the Gawadinon committee which is a subset of of our action team um to offer workshops in Cass Lake um you know as you were saying in Red Lake in a variety of locations that would attract more Native American people and one of the easiest ways to make it more culturally sensitive is to have a Native American person leading the workshop because they can add there are many places to add examples from your own experience and they add you know examples from their experience in their community and that's a big part of of what cultural sensitivity is about um there's also uh there's a really amazing woman um from Cherokee North Carolina and she is a gerontologist um her name is Blight Dr. Blythe Winchester and she has done um some a training webinar for the Minnesota Board on Aging that talks about cultural awareness in caring for people with dementia and she she brings up some connections that uh can apply to Native people all over the United States regarding traumatic experiences connected with boarding schools or adoption um or other things that may have happened in the person's past that may affect their um their progression through dementia and how they react to caregivers who are coming in to help them um so so tell me a little bit about your research in terms of what did you actually look into how did you do it and what happens with it next so the first thing I looked at was what does the community need and I found education which is connected to awareness I'm really connected to stigma so if we're using these words like demented when we describe people or we're saying things like suffering from dementia instead of living with dementia how that then is sort of a barrier to care people don't want to seek care if they're going to be called demented or suffer from dementia and then I with Carol's help found the dementia friends program which is an act on Alzheimer's initiative as well and that's a one-hour information session and I thought how can we use this to change people's attitudes toward dementia and that's what my project was looking at how do we change attitudes toward dementia connected with stigma and barriers to care and all of that so we implemented the dementia friend session and I used a pretest and then offered the dementia friend session and then did a post-test after to see if there was a change in people's attitudes toward dementia and we found out there was that after people participated in a dementia friend session they had more positive attitudes toward people with dementia so is dementia friends different than the 10 steps how does it how are they unique it is dementia friends talks about the warning signs normal signs of aging but it also talks about communication techniques some simple things about what dementia is versus Alzheimer's how are they different also helps people identify five key messages about dementia things like you can have a good quality of life with dementia people are more than just dementia things like that so is this something that's open more to like the wider public versus maybe targeted at a certain like a healthcare providing situation right you can offer it to any anybody we've we've offered it to nursing students it's been offered to middle school age students it can be offered to businesses okay all over oh we did a session at the community center downtown or no not the community senior activity yeah activity center yeah and so then your research obviously is being put toward your degree work but then is it also being shared then within the larger statewide group where they can also see those benefits yeah right so i have we're doing a webinar with there's eight states that are implementing dementia friends initiatives so i have a webinar scheduled it's called dementia friendly usa with them and dementia friends comes from the uk so i from the Alzheimer's society there so i have a webinar scheduled with the people in the uk as well okay interesting so carol with the stage that you're at now at some point does the does the work end do you think it continues into the future or at some point do you reach a point where you're like okay we've kind of we're dementia friendly well there's always more people to educate and in terms of caregiver support and support for people living with dementia we're going to have more people being diagnosed with dementia you know for a long time i don't expect to cure or prevention anytime real soon but more and more like trisha said we're focusing on how can people live well with dementia how do we maximize quality of life for that for the person with dementia and for their caregiver and we really have have found a lot of different ways to work with that and to make it to make a bad disease a little easier well listen ladies i want to thank you for joining us and telling us all about the history in terms of how you've got here and what could possibly be coming next anyone who's watching who might want to learn more either about act on alzheimer's itself or some of the materials that you guys have put together both locally and statewide you can visit the website here on the bottom of the screen i thank you for tuning in tonight and i hope you join us next time thank you