ABOUT JOANNA LAFLEUR:
Joanna LaFleur is the Founder of Memory Lane Foundation and a dementia care expert with more than 20 years of experience as both a family and professional caregiver. She has built a community of over 290,000 followers on social media, where she shares practical tips, dementia friendly activities, and compassionate communication strategies. Known for her animated style and hands-on training, Joanna’s mission is to make caregiving simpler, more joyful, and filled with dignity for both caregivers and their person with dementia.
RESOURCES:
Memory Lane Foundation Contact Info
Memory Lane Foundation on YouTube
TRANSCRIPTION:
David Fair: This is 89.1 WEMU, and on Washtenaw United today, we explore the matter of dignity and joy. We're going to do so against the backdrop of the heartbreak of dementia. I'm David Fair, and we thank you for joining us for our weekly conversation series that explores equity and opportunity in our community. Dementia has touched most all of us, be it a parent, relative or family friend. It's an affliction that exists without social or economic boundary. Dementia is a thief. It steals from its victim and robs from the caregivers and loved ones. How we approach and deal with the realities can make a big difference and expose us to some real moments and periods of joy. That's where our guest comes in. Joanna LaFleur is the founder of Memory Lane Foundation. Her more than 20 years' experience as both the family and professional caregiver has turned into a mission to help all of us better handle the encompassing challenges of dementia care. Thank you so much for making time today, Joanna! I appreciate it.
Joanna LaFleur: Yeah, thank you for having me! I appreciate it.
David Fair: If you don't mind, would you share with us the experience that brought you to this line of work?
Joanna LaFleur: Definitely! So, my grandma got diagnosed with Alzheimer's-type dementia about 22 years ago. And I was looking for a job. I was actually studying elementary education at the time. And I was looking for job. I got a job at a nursing home as an activity assistant and absolutely fell in love with elders. Like, I just realized that that was my calling, and what kind of put me over the edge of like needing to change my major, I would do music with the residents. I played the guitar. And I was playing one time in the evening, and there was this resident there who was very late stage Alzheimer's and did a lot of crying and couldn't do a lot talking. But whenever I would sing a song, she would know every lyric of every song. And at the end, when I was singing the song, "Good night, sweetheart! It's time to go," and she did this, "Da-da-da, da, da." And my jaw was like on the floor. I couldn't believe she not only knew every lyric, but even the musical notes of it. And I changed my major to recreational therapy with a focus on aging and never looked back. I've been doing it since.
David Fair: And do you love it today as you did in that moment?
Joanna LaFleur: Absolutely! I'm just as passionate today as I was then. It was something that just felt like this is my calling and it fueled me. And it still does.
David Fair: I want to explore some of the challenges and the difficulties of navigating the health care system, finding and accessing quality care, ensuring the care that is given is the care was promised. I'm taking this journey with my family right now, and it's really another full-time job, right?
Joanna LaFleur: Absolutely!
David Fair: I'm new to the process. Has it always been this difficult or is it becoming even more complicated than in the past?
Joanna LaFleur: I think, actually, there's more access now than there was because we know more about it, and there's more organizations that are fighting for the different types of dementia, not just the Alzheimer's type. But I mean, I think the problem is our health care system is very broken, and people are not trained enough in dementia care. Even doctors and nurses and the aides and everyone in the industry are not really trained well on how to handle someone with dementia or the appropriate medications to give or alternative medications or even just tips and tricks that they can give families. Most of the time, families will get, if they get a diagnosis, they get that and nothing. They get just sent home. And then, where do you turn? What do you do when your person with dementia is becoming a totally different person and you don't know how to handle it?
David Fair: There are new and sometimes amazing relationship dynamics that can come to the fore when you are going through the journey with someone in dementia. How do you give tips or educate both caregivers and family members on how to access those moments and not be consumed by the sadness and the grief?
Joanna LaFleur: Well, I think the thing is is a lot of people think, if there's a dementia diagnosis, life is over. And it's not. Life can still be okay. There's definitely going to be hard moments, but there's also going to great moments of connection and love and joy. And so, I think that's really important is to still see your person as your person, and they're not who they were. Well, they're who they are, but they're different now. The number one tip is do not argue with your person because they literally do not have the ability to reason and they're never going to be like, "Oh my gosh! I don't know what was wrong with me! I don't know why I said that! I don't know!" You know? They're always going to argue back with you because, in their world, that is true. And so, I try to help people understand that they have a broken brain. Sometimes you think, "Oh, you're just being mean," or "You're being rude or disrespectful," or "You're trying to annoy me," or something. And it's like, "No, they only have a broken brain," and they really don't most of the things that they're doing.
David Fair: It's kind of meet them where they're at.
Joanna LaFleur: A lot of acceptance. For sure.
David Fair: This is Washtenaw United on 89.1 WEMU, and today, we're talking dementia care with the founder of Memory Lane Foundation, Joanna LaFleur. So, in establishing the foundation, you've had these personal experiences. How did that play into the philosophy of the foundation itself?
Joanna LaFleur: Well, what I realized is that families need way more support than they're getting. I mean, I was really previously more serving like people that were in home care or in my communities that I had. But then, I realized that there are so many families doing this at home, and they're doing it alone. And I have so much knowledge to share--so many tips and tricks and ideas. And I just wanted to get that information in the world. And so, like last October, I started doing these little tips and tricks on dementia and social media, and within two months, one of my videos hit a million views. It was a video on Alzheimer's stages 1, 2, and 3. And I just realized that the need is even greater than I ever thought it was. And so, what I really want to do is be able to support family members where they're at, no matter what the situation is, both with consultation calls, my videos, and then a boot camp that we're creating, starting in October, which is a hands-on training conference for family caregivers.
David Fair: You know, I think so many people are looking for those answers online and have found you because one of the challenges is stigma.
Joanna LaFleur: Yup.
David Fair: Collectively, we still seem really invested in harboring some form of shame or embarrassment when it comes to intellectual and mental health. This is a learned behavior that has been socialized into our way of life. What are some tools you offer to help all involved ignore or at least get past any stigma associated with dementia?
Joanna LaFleur: Well, I think the thing is, I mean, it's here. It's happening. And it's happening more and more. Like, right now, the statistic is 50% of people over the age of 80 have a form of dementia. So, I think that thing is we need to just get over it, and we need understand that this is no worse than cancer, diabetes or any other illness. It's just an illness, right? And I think it's important to be communicative with the people in your life about what's happening because you need that support, right? And so, I think you know a lot of people don't want that diagnosis because they want to lose their independence. They don't want to lose things, they don't want to move and things like that. But the truth is it has to happen.
David Fair: Our Washtenaw United conversation with Joanna LaFleur continues on 89.1 WEMU. She is founder of Memory Lane Foundation and has developed a following of over 290,000 on social media who rely on her tips, suggestions, and compassionate care strategies. Another of the challenges: most people who are helping take care of a loved one with dementia need outside help, and there's a double-edged financial sword to all of this. For most families, it's cost prohibitive. In the old adage, "you get what you pay for" can apply. On the other side of the coin, the low pay, the hard work, the long hours can drive caretakers out of the business, and it makes it more difficult to attract people into the business. How do you at the Memory Foundation offer some help on guiding through that process and finding access to the care?
Joanna LaFleur: I mean, it's a tough one, for sure. But, I mean, at least what I provided a list of questions that you can act that you're actually going to get correct answers for. And my tips are if you're looking for like, say, a community going on opeth and the time when there's not a lot of staff there, like the evenings or the weekend. And not just talking to the salesperson--that's literally their job to tell you the company. Talk to the caregivers. Talk to the employees there, the admin staff. Ask them how long they've been there. And really ask about what are the ratios and make sure that they're being honest. Double-check things. And ask for references is also a really big one. Ask for references for people have to use that company before or have had a family member live in that community. Look for online reviews. I mean, you do have to do some digging for that, but definitely something that I can do is just provide the question to ask. And families--you don't know what you don't t know, right? So, it's really important to look past, especially when you're looking at a community, looking past the pretty chandeliers and the flush flowers and the three-piece bands and the chef that they have, because, ultimately, it all comes down to care and the caregivers. If you don't have good care, you have nothing. And that's in everything. And then, really asking them and grilling them on what kind of training do they do on dementia, because, really, these training regulations are so pathetic in the world, that most companies do have a memory care with completely untrained staff.
David Fair: Do you have hope and optimism for the future? Are we making the kinds of strides forward necessary to get us to a better place?
Joanna LaFleur: I really do feel we are because I'm meeting people in the industry now that have the heart like mine that are trying to help uplift the caregivers and the care industry of dementia care. I think there's people out there that really do care and love our elders and feel like I feel, you know? And then, also, there is also a new blood test for the Alzheimer's-type dementia that is going to become a lot more normalized to get because then, people can be a lot more prepared for what they may have and what they are going to be doing in the future.
David Fair: Well, we have made progress, and thanks to people like you, more is to come! So, thank you for sharing your time and your insights today, Joanna! I appreciate it!
Joanna LaFleur: Thank you so much for having me!
David Fair: That is Joanna LaFleur. She is founder of the Memory Lane Foundation and our guest on Washtenaw United. For more information on Joanna and the foundation and its work in dementia care, stop by our website at WEMU.org. Washtenaw United is produced in partnership with the United Way for Southeastern Michigan, and you hear it every Monday. I'm David Fair, and this is your community NPR station, 89.1 WEMU-FM Ypsilanti. Celebrating 60 years of broadcasting from the campus of Eastern Michigan University!
WEMU has partnered with the United Way for Southeastern Michigan to explore the people, organizations, and institutions creating opportunity and equity in our area. And, as part of this ongoing series, you’ll also hear from the people benefiting and growing from the investments being made in the areas of our community where there are gaps in available services. It is a community voice. It is 'Washtenaw United.'
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