By Pam McDonald

For over a decade, Lori La Bey has been educating the public about dementia and dementia care through her “Alzheimer’s Speaks” website, blog, and podcast, as well as through her writing and speaking across the nation. Oprah calls Lori “a health hero”. Marie Shriver says she’s an Architect of Change for Humanity, and Dr. Oz claims she’s the #1 Influencer Online about Alzheimer’s. We were pleased to have Lori as our guest for a recent podcast. Below are some takeaways from the episode; the entire interview is here.

Family Involvement Could Help Senior Living Dementia Care Improve

It’s really difficult to improve dementia care programs when you have high turnover, or you don’t have enough staff. And so, we’ve got to get to the root of that problem. And one of the things that I think a lot of organizations are missing out on is family volunteers or community volunteers. I’ve seen the power of embracing the families.

We don’t educate our staff enough on why families act the way they do. And so that’s a training session that I do. And, kind of in a nutshell, what it is, is getting staff to understand they’re there because they want to be there. If it’s for a paycheck, or they really like the work, it doesn’t make any difference. They have a choice. They get to go home. They have a job description that tells them what to do and guides them.

A family normally is entering any community on a crisis basis. This is not something they wanted to do. This is not where their loved one wanted to go. They envisioned their futures differently. Even if they come in saying they’re okay with it, it’s still very uncomfortable.

To Build Trust, Communities Must Tell Their Positive Stories

There’s a huge lack of trust no matter how wonderful your staff are because of negative stories. I think communities have to push out more positive pieces to make people feel more comfortable. And then they have to also understand that when a family moves somebody in, typically, they’re feeling really guilty. They want to check and make sure that life is going to be perfect for their loved one.

When they come, they are looking for problems because you can’t fix something that you don’t see. But if you’re only looking for problems, that’s all you’re going to see and that’s what they’re going to look for until they trust you. And so, it’s about how do you shift that level of trust. Once you do, they become your biggest advocates and donors, not just financially but in time and in contacts. In so many different ways, they can help and collaborate and be a spokesperson for you. You can turn your worst enemy into a huge spokesperson for you.

Let the Families Know the Reasons Behind the Choices You’ve Made

About three or four years ago, I had the best tour ever, and the reason it was good is because the person was actually passionate. They were authentic. It wasn’t scripted. And they told me the reason for everything they did. “We have this kind of chair, we have this kind of plate, we’ve chosen this type of lighting.”

Families don’t know all of the details and the choices that have been made that will really help their loved one. And when we educate them, those tours are an opportunity to not just look flashy and pretty and clean and active, but to show connections, to show the thought behind it.

Communities could take one thing and push it out every day. Make little videos of all these important little things. We lose those opportunities over and over again because people are so rushed, and they are so pressured to follow scripts.

I know some staff believe in the scripts heavily, but I can tell you, families know when someone’s talking to them on a script. And they want an authentic connection. They want someone to remember the details about them. They don’t want to be called every week at the same time because then it looks like it’s a task. People are getting really smart; we have to make it authentic and thoughtful.

It Comes Down to Knowing the Residents and Making Connections

I think the programming has to be personalized. I think the staff have to be able to really engage. They have to know their residents. I think some of the most powerful things are just a smile and not only engaging the resident but engaging the family too. It can be really simple like painting somebody’s nails and just holding their hand. It just has to be authentic and communicated with a smile, a giggle, a joke.

Granted, busy activity schedules are nice, but if an activity doesn’t take place and a family comes in, now you’re not doing your job. You’re also not allowing the fluidness that we need as people sometimes. I think we have to be careful not to over-schedule. One of my favorite sayings is by Harry Urban, who’s been living with dementia for 15 years and he’s still at home. He says, “You know, I liked to relax before I got dementia. I still do. Allow me to enjoy the moment, sit with me and relax, take in the breeze, smell the flowers, hold my hand. Just be at peace because I’m at peace.”

It’s Not What We Do, But How We Do It That People Remember

Even though dementia is not normal aging, we have to make it a normal thing to live with, something else to adjust to just like we have with heart disease and diabetes and cancer. We’ve got to take the fear out of it. We’ve got to remove fear and give hope.

We have to empower people to live their best lives. There’s way more that we have in common than we’re different. And when we focus on our differences, we are building those barriers instead of getting people to understand we’re all different. None of us are the same.

It’s not the things we do, it’s how we do them that people remember. And when we are understaffed and overstressed, people with dementia read all of that. Their other senses are heightened. People think, ‘Well, they don’t understand. They don’t know.’ They do. They’re taking it all in.

Really Being A Center of Kindness and Hope

It’s all about a sense of community and we have to communicate that sense of community. You want “positive speak” going on. Word of mouth is the best. When an employee is given a thank you note by a family or a call comes in, that needs to be celebrated within the community so that everybody knows good things are happening and other people are seeing it. And that kind of builds.

If it’s in your newsletter, whatever, then other families might go, ‘Well, you know, I should really speak up too and say something’ because they’ve seen that. So, it’s, training ourselves and our staff and our families and our communities to look for the positive, to look for the good, to really be that center of kindness and hope.