This article is sponsored by Dementia By Day. In this Voices interview, Senior Housing News sits down with Dementia By Day founder Rachael Wonderlin to learn her specific techniques for teaching dementia care, why improvisational theater is a valuable teaching tool for dementia care and why she believes in — and trademarked — the phrase “Embracing Their Reality.”
Senior Housing News: Rachael, you’ve become a leading voice in dementia care and innovation. How did you enter this space?
Rachael Wonderlin: I always knew I wanted to work in aging. When I was 15, a friend of mine and I started volunteering in a local skilled nursing facility in New Jersey, where I grew up, and I took to it immediately. I loved the residents. Something clicked for me and I pretty much stuck with this goal of wanting to work in aging.
I also had a personal story around aging. My maternal grandmother had a glioblastoma when I was 16. She died when I was 18. This is a brain cancer that completely changes the way your brain operates. I think that made it pretty real for me, watching somebody go through these neurological changes. I was and am very close with my grandparents, and that made it more clear to me that I wanted to work in aging.
I don’t know when I specifically decided on dementia care — probably some time in college, or when I started on my master’s in gerontology. My first job outside of graduate school was in a Brookdale Senior Living community, as the dementia care program manager. I absolutely loved it. I created a blog called Dementia By Day and started sharing stories about my residents — all anonymous, of course. People were responding really well to it and friends were telling me, “Rachael you should put this into a book.” I pitched my book concept to a number of places and Johns Hopkins University Press picked it up.
After working in three different care communities and waiting on my first book to come out, I decided to go out on my own. Working as a dementia care consultant would give me the ability to reach a bunch of organizations at once and help them build their programs.
You consult with senior living organizations to help create their dementia care programs and to help train staff. What makes you different from others who are crafting these programs and solutions?
Wonderlin: I’m asked this question all the time and it’s something that organizations need to know before they invest in me. First, I teach a different approach than others in dementia care. I teach a concept around what I call “Embracing Their Reality,” which is something that I’ve come up with and developed.
Second, I help companies develop their own dementia care programs. Most times when an organization hires a dementia care consultant, they license the consultant’s program, who then applies whatever they’ve already created to the company. I actually help and guide organizations to develop their own program. I don’t think one size fits all when it comes to dementia care. I really want to help companies build what they believe fits best for them.
Third, I would say that the books and the family resources I’ve developed really helped me stand out in this world because I know what families need to know. I know their struggles.
I’ve been a dementia care director in three different communities and, even now, I speak with care partners every single day. I’ve seen it all. I’ve heard it all. I’m able to speak to the direct caregiver in a really unique way.
You mentioned direct caregiver, and a lot of those are family members who want to know, “How do I work with Mom? How do I keep her happy and safe?” Who is your audience: Are you more targeting care staff or the family care partner?
Wonderlin: The end users of anything and everything I do is the family caregiver and the person living with dementia, but that then creates benefits for the senior living community, too. The audience that keeps me in business are the senior living organizations, the home care companies, the assisted living companies, the long-term care communities that hire me to help them build their programs. At the end of the day, the person benefiting from this really is the individual living with dementia, and that individual’s loved ones.
Take Capital Senior Living, for instance. We’ve seen some amazing results by implementing a brand new dementia care program there. They’ve hit 100% occupancy in one of the buildings where we’re rolling out their new program, Magnolia Trails, and even started a wait list. Benchmark Senior Living is another example where an organization is finding creative ways to help families. They bought 700-plus copies of my first book and provided it to their residents’ families. The feedback that they have been getting is all overwhelmingly positive. The fact that the families are able to learn from me about what it means to have a loved one with dementia and what it means to choose a dementia care community for that person helps the community.
Inevitably you have families going, “You know what, maybe this is the best choice for me. Maybe it is okay that I want to move mom into a dementia care community.” Whereas before they’re thinking, “Oh, I have to keep her home forever. It’s not right for me to move her,” or, “I shouldn’t even be thinking about moving her.” My first book gives people the guidance and the okay that they need to go ahead and make that transition into senior living.
You mentioned your first book. I know you’ve got a second book, but your third book is on the way, and I understand that it helps families find a senior living community for their loved one. Tell us about the book.
Wonderlin: We have a few working titles, and we’re just calling it Dementia Care Communities for short right now. It is also with Johns Hopkins, it will be out in January 2022 and it’s a culmination of both my previous works and everything else I’ve learned being in this field. It’s a guide, a manual, a handbook for considering a dementia care community for a loved one: what that means for the family, what it means for the community and adding information, of course, about COVID and disaster relief in general.
What do you think are the top areas where operators can improve their dementia training?
Wonderlin: It has to be relatable. Dementia education and training has to be relatable for the caregiver, for the direct care staff at the community or the direct caregiver in a home-care situation. The formal approach of, let’s bring in a group to just explain what dementia is and how it works in the brain, is not going to help or stick with the caregiver. I try to keep my approach as fun and engaging and relatable as possible through storytelling. I share information about my experiences working with people living with dementia, and I find that that’s a much easier way to do it.
I also think that the train-the-trainer model is “been there, done that.” I feel like it’s old, it’s outdated and we’re doing so much online now. Why isn’t there more one-to-one online training where a caregiver can log on to their own training and go through it and get a certificate? That’s what I offer through my program. It just makes more sense for the individual caregivers to get information that they need and really feel like it’s built to work for them in the end.
You talked about storytelling and that fits nicely with the fact that you do improv comedy and that you use it as a teaching tool. What is the connection between improv comedy and working with someone with dementia?
Wonderlin: Improv is about getting on stage, typically with at least one other person or a team of people, and creating a play based on a suggestion from the audience. While there are rules and structure, what you’re creating is totally made up and it’s going to be new to you, and it’s going to be new to the audience and to your scene partner.
In dementia care, it’s really the same thing. The person living with dementia may say something to you that you didn’t see coming. The rule that we teach new improvisers is, “Yes, and…” meaning to take what your scene partner is telling you, accept it as truth and add something to it. It’s the same thing that dementia caregivers should be doing: accepting what the person living with dementia is saying as truth in their reality, and then living that truth and agreeing with them and moving forward in that world. You’re living in their universe.
I think that fits with one of the several phrases you’ve trademarked, which is “Embracing Their Reality.” What is the significance of that concept to you?
Wonderlin: Embracing Their Reality is all about, how do you live in the world of someone living with dementia, wherever that is? I’ve found that other dementia approaches tend to keep things very black and white. “You can say this, but you can’t say that. You can do this but you can’t do that.” I like to throw away the word “lying” or “therapeutic lies” or, something I heard recently, “compassionate deception.” I throw all of that away and I replace it with this idea that if you’re embracing someone’s reality, you’re really telling the truth. You’re doing what’s true for the person.
When someone living with dementia asks, “Where is my mom?” you’re not going to say, “Sounds like you miss your mom.” You’re not going to try to distract her with something, you’re going to instead say, “Where do you think she is?” Whatever this person tells you is the right answer and you’re going to go with that reality. You’re going to really live in that world.
Dementia care is not black and white. It’s a gray area, it’s an art form, it’s a dance. I think when we teach people about dementia care that way, it’s much easier to understand than to say, “Here’s a formula that you absolutely have to follow and that you can’t divorce yourself from.”
There were a lot of challenges in 2020, to say the least. What makes you hopeful about senior living in 2021?
Wonderlin: I think organizations are finally starting to see the value in providing great dementia care. They’re starting to look beyond “more heads in beds” and “getting the state-mandated training done” and seeing the value in actual, true-to-life dementia education for staff and families. I’m talking to more and more company heads who see what I bring to the table as a major benefit to what they can offer in the industry. I’m also loving how quickly senior housing overall adapted to the major disrupter of everything in 2020: COVID. I think this says a lot about what we can do to change how older adults receive care when we put our minds to it.
Editor’s note: This interview has been edited for length and clarity.
Rachael Wonderlin’s Dementia By Day helps senior housing communities build dementia care programs that are tailored to their residents’ needs. To learn more, visit rachaelwonderlin.com.
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