What Dementia Taught Me About Building an Audience

Christian Taylor 0:00
But here is the part that is so awful, it's almost funny. My father had hitchhiked to church, as he told me. In actuality, he had caught a ride with an elderly woman living in the same building who has dementia, badly as he does, maybe worse, who somehow still has a driver's license and still out there driving.

0:19
If you make things and send them out into the world, films, podcasts, you have a small business that you're trying to keep alive, then this podcast is for you. Because there is one ingredient that I believe decides whether people stay with what you've made. And it's not some sort of trick and it's not a bigger budget. I ran into it twice this month. Once in a conversation with a Dutch filmmaker who made the most watched human interest documentary in his country's history. And once very close to home, in my own father's new apartment. By the end of this podcast, I think you'll see that they are the same thing. And I think it might change how you build an audience for whatever it is that you're trying to build. Now a few weeks ago, I sat down with Jonathan de Jong Jonathan is a filmmaker out of the Netherlands, and his documentary, Human Forever, is a wonder. It's about dementia. And as I said, it became the most watched human interest documentary in Dutch cinema history. I'm Christian Taylor, and today I want to talk about one of the things that Jonathan says matters most. And why I've become convinced it is also the quietest secret in filmmaking. But first let's take a listen to Jonathan.

Jonathan de Jong 1:35
That really makes us feel that we don't belong to anything or anybody anymore. And to have a sense of not belonging, I think this is the most dangerous thing when it comes to life.

1:46
Jonathan spent several years filming inside nursing homes all over the world. So when he talks about dementia, he is not talking about what he's learned from a book. He is talking about what he's learned from being up close and personal with people living with dementia. And here's the thing that surprised me. If you asked me what the worst part of dementia was before my conversation with Jonathan, I would have said that it's the memory loss, the forgetting, losing the people that you love while they're still standing right in front of you. But Jonathan taught me that the diagnosis is not the worst part. What he said, the people living with dementia told him was the worst part. Is how they feel they were treated once they have been diagnosed. You see, we get afraid. We don't know what to say. So we start disconnecting from our loved ones. We talk about them instead of with them. And slowly our loved ones, I guess, stop feeling like they belong anywhere or to anyone at all. This is how he put it. A sense of not belonging, he told me, is the most dangerous thing there is, because that is a moment a person starts to feel like there is no point to their life anymore.

3:07
I have been turning that over in my mind ever since our interview. The most important ingredient in caring for a human being is not medication. It's not a nicer building. It's not a bigger TV. It's a person still feeling like they belong, still feeling like they're one of us. Hold on to that word belonging because I'm going to come back to it in just a minute. Now I'm going to get personal for just a second. Because this month, this stopped being merely a podcast conversation for me. I've shared this before, my father has dementia. And a few weeks ago, I went to visit him in Mississippi. Now I was supposed to pick him up for church at 8 a.m. on a Sunday morning. The staff had gotten him dressed and fed him breakfast at seven o'clock, just like usual. And at 7 30, shortly before I got there, he walked right out the front door. And then I got there at eight, and he was nowhere to be found. And for two hours, we couldn't find him anywhere. Two hours. I cannot tell you what that felt like. But here is the part that is so awful, it's almost funny. My father had hitchhiked to church, as he told me.

4:26
In actuality, he had caught a ride with an elderly woman living in the same building who has dementia, badly as he does, maybe worse, who somehow still has a driver's license and still out there driving. The two of them just drove off to church together. He didn't even know what church they were going to. That morning made a decision for me that I had been dreading for a really long time. He wasn't safe. In regular assisted living, they couldn't stop him from walking out the door. So I didn't have a choice but to move him to a locked memory care unit. And I gotta tell you. I live far away from my dad, and making that call from a distance about your own father was one of the hardest things I have ever had to do. And having good reasons to do it did not make it hurt any less. But this is what I actually want to share because it's actually the whole point of this episode. Yesterday was move day, and it could not have gone any better. He ended the day with a huge grin on his face. And it worked because of the people that made it happen and the plan. Ashley, a social worker I bring in from time to time to help my dad, took him out for the whole morning to get him a haircut and a shave at his favorite barber shop and enjoy the massage chairs at the mall that he loves so much, Just so he would be happy and busy during the initial chaos of the move.

5:52
While he was gone, John from the facility where my dad lives, moved all of his furniture. Karen, my dad's brain therapist, packed up his clothes and all of his personal things. And James, who I call my brother from another mother, and who treats my father like his own dad, hung all the pictures, and he set up the ring camera I place in his room, which gives me a window into his world and keeps me close to my dad, even though we're states away. When Ashley had to leave at noon, James took over keeping my dad busy. And Karen took over the setup and beautification of his room. They decorated his room in his favorite Ole Miss colors - that was Karen's idea. They traded his little twin bed for a king. And when my father finally walked into what Karen had dubbed his "penthouse", he looked around and he said everything was amazing and perfectly in its own place. Later, when I called to check in, he told me he had moved into a penthouse with a big security door to keep the bad guys out and to keep him safe. Because that is just what Karen and James had told him. He was happy as a pig in mud, as they say in my home state of Mississippi. And I watched the whole thing from far away on my phone, thanks to the ring camera in his room.

7:13
I couldn't be there in person, but I was participating all day from the phone and on the ring camera. I could see it all happening. And I gotta tell you, he felt loved all day long. None of that worked because of the new red blanket or the Ole Miss pillows or the bigger bed. It worked because of a group of people still saw my father as a whole human being. And they made a plan that made him feel loved and like he belonged. It was the people and the plan. And that's Jonathan's ingredient playing out in my father's brand new apartment. Now, here's where this becomes about making things and not just about caregiving. Because when I went back and really looked at my conversation with Jonathan, I realized something. He does not just believe in belonging as a way to care for people. He used belonging as the way he built his entire film. Think about how most of us do it. We make the thing first, we finish the film or the first episode or the product, and then we go out looking for an audience, hat in hand. Jonathan did it the other way around. He built the belonging first. He built a whole movement.

8:31
And honestly, the film was almost the smallest part of it. He put a real human being at the center of it, a 21-year-old nurse, Teun Tobes. Then there were best-selling books out in the world before there was even a single frame of the movie shot. He and Teun created a play and discussions afterwards. So by the time the film actually came out, people already felt like they were part of something. They already belonged to it. And listen to how he talks about the work itself.

Jonathan de Jong 9:05
My work is all about connecting people, showing the beauty of humanity, making people aware of the importance of connecting, of the power of social connection.

9:13
He even said this to me and it made me laugh.

Jonathan de Jong 9:16
We made dementia sexy.

9:18
He got young people to buy tickets and sit in a theater for a documentary about dementia. Not by tricking them into it. He did it by making them feel like they belonged to something that actually mattered. That exact same ingredient that makes a care room work is the one that built his audience. He did not go out and reach people. He invited them to belong. There's an old idea that helps me understand why any of this works. A philosopher named Martin Buber wrote a little book back in 1923 called "I and Thou". And his whole idea is that there are two ways to be with another person. You can treat someone as an "it" an "it" is a thing you manage. A problem you handle, a body in a bed, a number on a list. Or you can treat someone as a "Thou". And a "Thou" is a whole person, someone you actually meet eye to eye. Dementia care goes wrong the very moment a person turns into an "it", a patient to be processed, instead of a father to be known. Jonathan's word for the answer is belonging. Buber's word is "Thou". but they are pointing at the very same thing.

10:37
See the person. And here is the part that is for us, the ones who make things. Filmmaking goes wrong the exact same way. The moment your audience becomes an "It", a view count, a click, a number to convert, you have stopped making something for people and started aiming something at them. And people can feel the difference. They can always feel it. We do it to people in our films too. We can point a camera at a person and quietly turn them into a prop for our argument. Or we can meet them. We can treat them like a "Thou". Jonathan and Teun met them. That is why it worked. So here is something to think about. It's simple, but I promise you, it is not easy. If you are trying to get something you made in front of the world, stop thinking about your audience as an audience. Build belonging before you build buzz. Invite people to feel like they are part of what you are doing, long before you ever ask them to watch it or buy it or share it. Treat the person in front of your camera and the person on the other side of the screen like a "Thou", like a whole human being, like someone who belongs. That is what Jonathan did with a film about dementia.

12:07
And in a much smaller way. And much more personal way. That is what a room full of people did for my dad yesterday. It was the people and the plan. So the question I want to leave you with is this. And the thing you're making right now, who have you been treating as an it? And what would change for them and for your work if you started treating them like a "Thou?" If something in this helped you today, do one thing for me. Send it to just one person. Maybe someone who is building something and can't quite figure out why it isn't working. Or maybe someone who is caring for a person they love and needs to hear that they are doing it right. Just one person. And if you're new here, follow or subscribe wherever you're listening or watching. It costs you nothing and it means the world to us. It would also be great if you would leave us a review on Spotify or Apple. If you would like to support the show, the link to our Patreon is in the show notes below. Belonging is the method. It is how you care for a person. It is how you build an audience. And near as I could tell, it is how you make anything that lasts.

13:26
I'm Christian Taylor and you've been listening to Documentary First, The Deep Dive. And I'll see you next time. Bye, everybody.