In Conversation with Lori La Bey, Founder of Advocacy Group – Alzheimer’s Speaks

In the podcast of the month, Affinity Senior Care CEO, Chris Z speaks with Lori La Bey.

Lori La Bey is a passionate and inspiring keynote speaker and the founder of Alzheimer’s Speaks, a Minnesota based advocacy group and media outlet making an international impact by providing education and support for those dealing with Alzheimer’s disease and other dementias. Her own mother struggled with dementia for over 30 years. Her radio show is also believed to be the first program dedicated to dementia in the world, along with the first webinar series called, “Dementia Chats™,” whose experts are those diagnosed with the disease.

La Bey ignited the fire that sparked the first Dementia Friendly Community in the United States, in Watertown, Wisconsin in 2013. In 2011, she launched what is believed to be the first Memory Café in the U.S. in Roseville, Minnesota and 2016, she was involved with developing the Dementia Caregivers Re-Entry Initiative.

La Bey is a highly sought-after speaker, trainer and advocate for new delivery systems and attitudes towards those with living and dealing with dementia. In November of 2013, she was appointed to be an International Ambassador for the Purple Angel Project, the new global symbol for dementia. La Bey is driven to provide a variety of FREE RESOURCES to connect family, friends, professionals, advocates, and those just interested in learning how to live positive, and purpose filled lives with dementia. Her goal is to continue to develop and provide unique delivery systems that have 24/7 access.

Read the edited transcript from the show, below.

Chris: Hello, Welcome to our show Coffee with Chris. Today we have a special guest. I am so honored to have Lori La Bey with me here. Welcome.

Lori: Well thanks Chris. I’m all ready to go!

Chris: Alright! Lori La Bey is a passionate person in the Dementia Organization here in the community. She’s an advocate and research for ways to shift our dementia care culture, from crises to comfort, and she was recognized by Sharecare and Dr. Oz, as the No.1 Influencer online for Alzheimer’s. As a professional speaker and daughter of a mother with Dementia for over 30 years, Lori understands about Dementia, the changes that need to be made in multiple levels. She also hosts Alzheimer’s Speaks radio, and a webinar series called Dementia Chats. Lori connects with people with best practices, who facilitate conversation that is needed around dementia care.

Welcome Lori! We appreciate you.

Lori: I’m thrilled to be here Chris. So, thanks for having me on.

Chris: So, living with your mom who has dementia, for so many years, first-hand personal experience, was this the motivation and purpose for creating the advocacy and information around Dementia Care?

Lori: Absolutely. I was a frustrated daughter who thought there’s got to be more people out there like me, more people like my mom, my family. And there’s sure got to be more resources. But where were they? We weren’t finding them, and no one was really introducing them to us. Even when my mom got diagnosed, we were notified through the mail. They didn’t even meet with us in terms of telling us about her diagnosis. So that was really interesting. But at least that part has improved now, the doctors meet with people. Yet there’s a lot of doctors out there that are not communicating the diagnoses because they don’t feel like there’s any hope or any resources out there. So yeah, I’m just out to change the world, move them from crisis to comfort, let them know that there’s lots of support out there, all over the world, and everybody can be a part of that, and that includes those living with dementia. They are full of knowledge of what their needs are and how they can help us care better.

Chris: What was the most rewarding part of this experience of working with your parents?

Lori: The intimate moments. My mom had dementia; my dad had brain cancer. Out of those 30 years of my mom with dementia, my dad had brain cancer for four and a half years. Just getting to know them on a more intimate and personal level, they both taught me to put down my phone, and back then my pager. That the world would still spin if I sat down with them. I remember when my dad died, I had all these stories that one day I am going to get into a book and I was sharing them with my brothers, and they were like, “Where did you get all these stories about mom and dad?”. And I remember my jaw just kind of dropping, going, “Well, I was there!”. And then I felt really sad for them because they weren’t there. And they missed out on all of these beautiful stories that to this day still melt my heart. My dad’s been gone since 2001 and my mom since 2014 and I still feel very closely connected to them. It allowed me to almost get to know them on a spiritual level, because it really was almost a religious experience of learning unconditional love at so many different levels as both their diseases progressed.

Chris: I commend you for that. Because we hear that being a caretaker now has become more difficult than it ever has been. They say that most family members tend to live out their entire life at home, but the caretakers then realize that some of these tasks are beyond me, such as to bathe, dress, and feed them, and they end up hiring caregivers. However, you went through the whole journey as a caregiver. So, did you tire out ever and thought that this is beyond me, and I need help?

Lori: I sold the real estate, and I had a team of people, so I was able to really step back and be there for them. I was extremely fortunate. And we missed the home care sector, one because I had that flexibility, but two, my dad had taken a fall. He went to go downstairs, and instead of taking the elevator, he fell down two flights of steps. And he was never able to return home again. And so, he had to go into a nursing home and the plan was always for my mom to come and live with myself and my family. And she was there probably 2 or 3 weeks, and I remember her waking up clear as a bell one morning, and this is so unusual, I have never heard of anyone this happening to. She woke up, this is a woman who couldn’t tell you if she should wear her flipflops or snow boots if she looked outside, but clear as a bell said, “I want to move to the nursing home with dad.” And I remember right away thinking, “What did I do wrong? Am I not good enough? Don’t you like it here?”, taking it all personally. And she said, “No, it has nothing to do with that Lori.” She’s like, “We’ve been together 49 and a half years, and I am not leaving him now.”

So we went from home, into the nursing home, and that was still a huge adjustment. More so for me than it was for either of them. And yet, getting that outside support, I don’t care if it is coming into your home through a homecare agency or if it gets to the point where someone is placed, there is a true value in that and a lot of times we overlook that thinking that we’re super mom or super daughter or whatever it might be, and that we can handle all that. But when you handle it all, things are going to get missed, like taking care of yourself and having balance.

Chris: Yaa. They did not prepare us in school for this. That’s for sure.

Lori: No. And it is nice to see they are having some conversations now in schools regarding care, because there are a lot of high school students, even middle school students and even younger caring for family members at home.

Chris: Education is so important, especially in the beginning stages. We all go through this cycle of life, and I don’t know if my parents one day if they are going to accept wanting me to shower them and do all their personal care. And even during their transferring, will we be able to do that visit. So, I wanted to ask you this, because I know that you are an expert at this, when someone is going through this whole journey of life, what would your advice be as a form of motivation or inspiration to anybody out there as a caretaker?

Lori: Connect! Connect with others going through this, reach out to resources, even if you don’t need them today, be prepared for tomorrow, coz it will make your decision-making process much easier, but know you are not alone. There are so many people like you out there, and just once you connect, that isolation, heaviness, burden, it lifts. And you feel like you have confidence, you can talk to them and understand. Coz a lot of times even with our own family, they don’t get it, they might not be around, or they show up every now and then, and so they show up and everyone is kind of perked up and doing fine, and then they leave after an hour or two, and things are right back to the way they always were, but the family members didn’t see it. One because they didn’t want to, and two because it was a short period of time.

A lot of times people with dementia and other chronic illnesses can kind of lift themselves up because they want to be independent, they don’t want anybody looking down on them, just like the rest of us, they want to fit in. So, they muster things up to engage. It can be a really hard battle, especially if you are working with siblings and family members that are in denial for various reasons and it is probably one of the most frustrating things that most care partners will talk about, is how do I get them to understand, how do I get them to see what’s really going on and connecting them with a homecare agency like yourself. And that can make the biggest difference in the world – just having somebody that understands the realities.

Chris: It is so hard in the beginning stages of having that connection with your mom and your dad, seeing them in this light, and it’s almost like going back to the stages of the beginning of life, and so it’s redirection and trying to figure out how can I still connect and give them that same quality of life. My main thing is, how much can I learn from my dementia patients, so that they can connect with me and feel safe with sharing the personal moments of their day.

I wanted to speak about Alzheimer’s Speaks. You have gone into this new education series to be able to go deeper after your experiences, you created this resource for the community. So, what is Alzheimer’s Speaks? What’s the purpose of it?

Lori: When I stepped into this in 2009, I was actually encouraged by senior housing communities to step in, because they said everything else was doom and gloom and I was about hope and connection. And in 2009 I decided to go all in, I put my life savings, my retirement everything on the platter and said I am at least going to sleep good at night and say that I tried to make a difference.
So, my goal was to be inclusive. I didn’t feel the care and the support systems that were out there were really inclusive. In fact, back then no one even talked to the person with dementia. There was a belief that you are old and senile, you were incontinent in a wheelchair, you weren’t mobile, couldn’t talk. And that’s not real life with dementia. There are people out there that are still driving, working, that have early onset or mild cognitive impairment – they keep coming up with different names and different categories all the time. So, I wanted to make sure that we included the person with dementia, and that we included the care partners. They have so many insights and they I know for a fact, our family was and many that I have talked to, just felt like we were pooh poohed, like ya, get out of here, we are the experts, we know. No! you are not in the trenches, and you don’t know what it’s like on a daily basis, and you are not listening to us. I wanted to give everybody a voice – those with dementia, their family, and friends, as well as the professionals, the academia, as well as the medical model, and the researchers. Because if we don’t all work together, there’s no way we are going to make sustainable changes. And I also wanted to use multimedia – so I started out with a blog, then I started the radio show, and I interview people all around the world, at all different levels, and then I started Dementia Chats where I facilitate a conversation with people living with the disease. They pick the topic, and they tell us what it is really like, and how can we help, what’s working and not working. Brought over the memory cafes from the UK, I never went over there and visited, I just talked with Norman McNamara, who is living with dementia. He connected me with people over there. Memory Cafes are a whole different concept from what we had here.

Chris: You have people speaking in other countries too, with dementia? And that’s called memory cafes!

Lori: Oh yeah! Memory Cafes are for people with dementia and their care partners. It’s a support group. But I learned about it through Norman McNamara who is over in the UK. And then he hooked me up with people over there. They actually rewrote all their guidelines and everything and they took their Ss out and put or Zs back in and said – “Here! Just take it.” And they didn’t want anything. But the big difference over there is that the government funds those groups. Our government doesn’t do any of that stuff over here.

So, it is on volunteer basis and there’s over a 1000 of them now. My partner with Dementia Map has a website called Memory Café Directory. That covers five different countries, and then there’s like a 1000 different groups. So, the one that I used to do, we used to meet in person, and through Covid we’ve been doing virtual. Now we have somebody from Vienna, from New Jersey, we are located in Minnesota, and anybody is welcome to join us.

Sometimes support groups can have a negative turn and people go there to complain, but I describe a memory café like a bowling league or a bridge club. You don’t show up for the equipment, you show up for the camaraderie. We laugh, cry, and support one another, and a lot of times we don’t really talk much about dementia, but everything else that’s going on. So, we know if they went to a grandchild’s ball game, if they got a flat tire, I mean we talk about everything, and dementia comes up as a topic just like it would with your friend. And they bring in resources, and they are filled with knowledge coz they are living with it every single day.

It’s really about building a community and teaching people to live graciously together and supporting one another. That’s what Memory Cafes are.

The Dementia Chats, that’s a video where people with dementia tell us what they want. We just launched a new program called Dementia in the Arts – that is a panel of people with dementia, and they show us their artwork, they tell us what they get out of it, and what it means, and it’s super powerful. I would love to get their artwork on exhibit. Started the first dementia friendly community in the United States, not a concept that we developed here, it was something from overseas. And I partnered with a Lutheran Home Association. I am in Minnesota, couldn’t get anybody in Minnesota to do it, so we ended up launching in Wisconsin, which worked out fine. Now pretty much every state has some Dementia friendly communities. They kind of went on a hiatus over Covid but hopefully that will pick back up.

Chris: You also have Dementia Map. You went and created something on top of all the things you already do. Tell us about Dementia Map.

Lori: Dementia Map, myself and my cofounder, Dave Wiederrich, who has Memory Cafes, pulled that together, and that’s been almost a 40-year dream of mine, from the day my mom got diagnosed, it was like where is the resources, there’s got to be resources, and no one had really pulled anything together. The way we work here in the US, typically we are not overly collaborative, people will tell you they are, but I can tell you we are not. We are not near to the point where we need to be. In fact, I got so frustrated at one point, I called the Executive Director of the Alzheimer’s Disease International when I first started out trying to get people to work together and he just laughed coz I said, “I might have to move.” And he’s like you don’t get it, people in the United States left here because they didn’t want to be about the greater good, they didn’t want to look at things that way. They wanted to be proprietary and that’s what you’ve built over there, and I was like Oh my gosh, that makes so much sense.

Dementia Map is a place where people can go and mine for resources, products, and tools for free. They don’t have to sign in, they don’t have to worry getting hacked or scammed – you are giving no personal information, there’s no pop-up saying, “Let’s Chat!” which can be really disruptive and disoriented. There are no moving parts on it. We have four different segments in the Map itself – one is a resource directory, we have a 150 different categories you can choose from, then we have a calendar of events that you can scroll over, there’s lots of free stuff, in summer are for a fee, but many of the events are for free. And then we have a glossary of terms coz you don’t know what you don’t know. And then we have a blog.

We are not putting any businesses in just to put them in, we want them to input and be in control of their messaging and we want people who are going to be responsive to the public, we want to directly connect them. So, no cost to the end user, and we have a free listing, or two enhanced listings, depending on if somebody wants extra exposure through banner ads, write more articles, a variety of different features. We are really excited about that and it’s growing all the time.

We are just starting an affiliate program that’s going to be launching here soon. To be able to help people with their own budgets and also get a discount at the same time. Again, our end goal is, we just want to draw people in, so that families and professionals, both can find the support they deserve because everything is not in our own backyard. We wouldn’t have the dementia friendly communities, or the memory cafes if we weren’t talking overseas.

Chris: And also, if you can’t have anyone else, it’s just your family members, the best thing is education. Educating everyone about this change that happens. And obviously change is difficult for some, everyone handles it in different ways, but if they can go out and utilize all these resources, they can make the change and redirect in a better, different way.

Lori: And we are thrilled that Affinity Senior Care is in there. We need as many resources in there as possible, and people can search by location. But what also businesses have to remind themselves of, and they get it probably less than families do – a care team isn’t all local. A lot of times, businesses say we have to stay local because this is who we serve. But if their son is in London and their daughter is in California, their nephew is in Minnesota, everybody is trying to help out, but they might not know sister communities, this system can really help with that, big time in terms of getting people connected. Same with businesses, even your staff to be able to give out the resource to families can save your staff time. And people like digging through that stuff, there’s all those authors, there are over 300 authors that have been through the experience of dementia, and they have written various works. There’s Soapbox TV which is a free online streaming service developed specifically for seniors, or the foot bar walker that was developed by two friends for two friends that allowed their loved ones to stay home for more years and reduce injury on both the man who needed the walker, George, and his wife Peggy.

It’s incredible the resources that people will find out there once they start browsing through. People are just shocked at the variety.

Chris: There is so much out there. This is the value of using Digital Media, and I would totally advice any business owner in the USA to connect with Lori and be part of the resources. And Lori did mention that Affinity Senior Care is part of her network. The only reason why is that, here in our office we have our own dementia support group on Facebook. It’s called Dementia Support Group. And our own podcast show, and educational series on YouTube. But it is not for our benefit or to get a client, it is to give resources to the family members that’s hurting. That’s why I am so happy to be connected to Lori and honored to have her on my show here.

If you could help us conclude the show with something motivational for families and people going through the hard time.

Lori: For one, if you are caring for someone, if it’s dementia or not – I came up with this tool called ‘Your Memory Chip’, and it switched for me going by my to-do list which was all about them and everything I had to do that day, to focusing on are they safe, happier, pain-free? And when you do that, you will find not everything on your task list you have to do. Sometimes we put it there to keep busy coz we don’t know what else to do, but it allows you to be that son or daughter or spouse or friend first. And it allows you to read their non-verbals. It allows you to breathe easier when you know they are content, happy, that we don’t always have to keep them busy. O maybe just sit next to them in silence. We don’t always have to fill air. And when we do that, when we are caring for them in that fashion, we are also caring for ourselves. And we are allowing ourselves to breathe.

And I would say for care partners, don’t disconnect from your own world. Still make time for your friends. Because you need your soul to be filled and I pushed that away too long and I didn’t know how empty I got until I finally decided to meet with my friends, not because I really wanted to go see them, but I wanted to get them off my back, because it was one more thing I had to do. I was only going to be there for like 10 minutes, like in, out, check, it’s done! Leave me alone. Coz they were calling me every week to have coffee. We laughed and we cried for two hours, and I never missed after that. Because I didn’t realize how much I needed to laugh, the support and friendship. Because you push it aside and we can’t do that. Because when we do, we can care as well.

Chris: What a great advice! Anyone who is listening to this show, please check out her resources. Go to www.AlzheimersSpeaks.com and also check-out www.DementiaMap.com.

And you can reach out to Lori anytime. She’s on all social media platforms.

Lori: Can I say one more thing. Because when you mentioned about the loss of parents and things like that, I would really encourage people to realize, when you are grieving that deeply and feeling that loss, flip the table on that, and realize you couldn’t feel that much pain and loss if you didn’t love them that deeply. And a lot of people never ever love that deeply. So that really is a gift.

Chris: That is deep, Lori. It’s a gift to even just experience that love from a parent or anybody in life. And that impact should be translated in the decision making. If your parents are independent now, savor that time.

Lori: The flip side is, we could have an accident and be incapacitated. It’s not necessarily an aging thing. Another thing that I will bring up is that a lot of my friends said to me over the years, “Gosh Lori, you have so many cool stories about your parents. And I don’t have those coz mine were independent, so we kind of left them alone.” And they are like, I need to get closer because I want your stories, and they might be on different levels, doesn’t make any difference – stories are stories, they are embedded in our hearts. Even as someone, if they progress to dementia or something else and they have less skill sets, they still have the ability to communicate, connect, and teach us lessons. Look at the lessons little kids teach us all the time about how to care, they don’t have the judgement. My mom got rid of her ego, that kind of went out the door. She was one of the safest people I could ever go see. Coz, she didn’t judge me. There was none of that. It was just total acceptance. Those things are gifts. But if you are scared to be around that, if you are scared to try, you are going to miss out on a lot.

Chris: Well, you and I – we can talk about this forever, we are completely connected on this topic for sure. But I thank you for being on our show and we appreciate you so much.

Lori: Thank you Chris. And keep up the good work. Appreciate it.

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