Alzheimer’s and dementia can make you feel depressed, alone and socially isolated. When ‘normal’ people don’t understand your need for human contact, what do you do? Lori La Bey is here today to share some incredible information about useful social interaction resources. Enjoy the show!

 

Margaret Manning:

My guest today is Lori La Bey who is an advocate for the discussion about dementia and Alzheimer’s disease. She spent 30 years of her life caring for her mother who suffered from dementia. Because of that, Lori has been educating people around the world, working hard to change the conversation about becoming more dementia friendly. Welcome to the show, Lori. It’s great to have you here.

Lori La Bey:

Thanks for having me. I’m excited to be here with you, Margaret.

Margaret:

I hope you don’t mind me mentioning your mother, but your personal experience with this disease gives you a very special and unique understanding of the support that is needed for somebody with dementia. I’m sure caregivers can also benefit from your knowledge, especially if they are looking for some help.

I wanted to take this opportunity and ask you to share with us some of the resources that are available out there. This includes support groups that could help a person feel less alone on this journey.

Lori:

This is a really exciting topic because things have changed dramatically over the past years. My mom had dementia for 30 years, and she’s been gone for two, now. When we first got into this, the only support groups out there were only for the care partner. There weren’t any for the person with dementia, and now that has expanded greatly.

One of my favorite support groups I’m going to mention is called The Memory Cafe. It actually started over in the UK. I learned about it through Norms McNamara who is living with Lewy Body. I was so excited about these groups because the person with dementia and their care partner would go together. The group pulls people together because of the disease, but the disease takes a back seat.

I tell people it’s like a bowling league or bridge club—you don’t show up for the equipment, you show up for the camaraderie. Everybody gets to be who they are, and couples get to have a circle of friends that understand the disease. There’s no embarrassment no matter what happened. Everybody understands. They share stories, but more importantly, they share all of themselves with each other.

It’s not just about getting together to complain about the disease. They celebrate birthdays and holidays; they talk about deaths and illness, car accidents and life. Their favorite topics are grandchildren, pets and hobbies. Basically, they talk about everything.

Every time we get together we all introduce ourselves so no one’s ever embarrassed of not remembering. Even for me it is useful because when we go around the table, I still might not remember everybody’s name. I’ve just never been good with names.

Margaret:

Me too.

Lori:

It certainly is a nice reminder. Then they talk about what we call bummers and blessings. Bummers are things that haven’t gone right in the last two weeks, and blessings are the things we are thankful for despite the disease. We make a point of sharing that.

People would sometimes bring books and resources in that they found and want to share. It’s also a great opportunity to share stories. I’ll never forget this one time — and I have permission to share this story — where a woman said, “We had rough night last night.”

She said, “We went to go to bed, and Bernie gave me this big hug and said, “You know, you are a really nice lady, but you have to leave because I’m married.” His wife, Mary-Anne, was so taken aback, needless to say, and the whole groups was like, “What’d you do? What’d you do?”

She told us, “I left, and I went into the guestroom. And I went to sleep.” Then she added, “No, I didn’t. I stayed up all night, praying that in the morning he would know who I was.” She said, “I went to bed knowing how much he loved me, even though he didn’t recognize me.”

Margaret:

Yeah, he wouldn’t cheat on her. How many people get together in these meetings?

Lori:

The ideal is between 11 and 15, but some of our groups have grown as big as 20 and 30; they ebb and they flow. Right now, we have three that all meet up at the same time. It’s cool that these kinds of groups are popping up all over the world now.

Again, everybody wants to know the criteria. They ask, “How do I do it?” But that’s not how you live your life. That’s not how you get together with friends. It’s not about an agenda. Initially, we thought we would do some programming, and then we’d have chit chat.

What we found was that people want the chit chat. They just want to develop friendships. With that story that I shared, the amazing thing was that everybody around the table then shared their own story. They all said, “We’ve never shared that with anybody before. That was an issue for us.”

Margaret:

It took it down a deeper level.

Lori:

Oh yes, they don’t talk about the weather and sports. They talk about real life and all the emotions that go with it. The groups are very powerful, and they don’t need to be costly. What we do here, in the US — because we don’t have funding for these, where other countries do have some funding — is, we just talk to people who are like minded; who want to make a difference.

There are companies we have approached, like Arthur’s Residential, which have been so gracious. They give us the space, they give us the treat, and they help us with other facilitators. I couldn’t ask for a more perfect partner.

Margaret:

That’s wonderful. You mentioned that those groups assemble all around the world, Lori. Is there a website that people could check out?

Lori:

If you go to alzheimersspeaks.com and then go to Initiatives and Projects, there will be a link on the left for Memory and Alzheimer’s Cafes. When you scroll down, there will be a big map for the US groups.

A company called Calendar Cards has now devoted their time to putting these in. This is really the best source to find a Memory Cafe here in the US. There is also another link there that will help you track groups in other areas and countries.

Margaret

Are most of the people who attend these memory cafes far along on the Alzheimer’s/Dementia spectrum?

Lori:

It really varies, but I would say early-to-mid stage. If they are further along they really can’t participate in the group. One organization wanted me to test everybody to see where they fit in the disease category. I said, “I’m not going to do that,” because they might have a bad day the day we test them.

We’ve had people with trouble speaking because of their dementia. We would clap if they could just get their name out when introducing themselves. They are totally following the conversation though, and they are thrilled to be sitting next to their spouse.

We had one man who used to be a deacon in his church and used to speak a lot. Now he just did gestures. He would be like, “Ohh!” and he would just add so much joy to the conversation through his gestures.

Margaret:

So that seems to cover memory cafes, Lori. What other resources are there? Obviously, there are your Alzheimer’s Speaks shows and the content you have available on your website, which is amazing.

Lori:

Yeah. We have the Dementia chats where we interview people with dementia and also, free videos that people can watch anytime. They give wonderful insights. We also do the radio show where we interview a little bit of everyone.

One of the groups I would really like to mention is called Dementia Mentors. This is fantastic for anybody who thinks they may have Dementia or has been diagnosed. It’s great to hook up with them and get a buddy who’s heard those words. They do amazing work together.

They do video conferencing, which allows, say, a US mentor to help someone who lives over in Sweden or Indonesia or wherever. They share stories and help people understand the disease and how to stay socially connected, which is really powerful.

There’s another group called Dementia Alliance International, DAI, and they do similar things. Both of them also do virtual memory cafes. One of the problems for care partners is that they can’t always leave the house; they stay with the person with dementia.

Both of these groups typically are for people with dementia only. The care partner can help get them setup on the computer if they need assistance.

Margaret:

And then let them be.

Lori:

Yes, exactly. They let them interact. Also, there are tons of groups on Facebook. If you want to learn more about Lewy Body just put in Lewy Body and you’ll get connected with people you can have a conversation with.

There’s Forget Me Not, which is run by Harry Urban, who has dementia. I marvel at him because he was one of the founding members of Dementia Mentors as well. He’s also a trouble shooter who maintains a lot of subgroups within his groups.

For example, he had a lot of Spanish speaking people who said, “We would love to participate in something like this, but we don’t understand English.” So Harry was like, “Well, I’m going to make a group up, and just get it translated. We are going to make it work.”

He would do anything so that they can communicate, and this is from a man who’s been living with dementia for 12 years. People have to understand that this isn’t necessarily a quick disease, and support groups are critical.

If you are a care partner, put in care partner or elder care; put in Dementia or Alzheimer’s. If it’s vascular, or affects the frontal or temporal lobe, or whatever it might be, put it in. Information will pop up with people that you can connect with. When you’re online though, keep in mind that just like anything else, it might not fit you, and that’s okay. It’s okay to step back to where you’re feeling comfortable.

Margaret:

I think a lot of times it doesn’t match your personality or values. You are your whole person; you are unique and you’ve got your own life experiences that brought you to this disease. Naturally, you are going to want to do the things that you feel comfortable with.

It sounds like there is a wide range of opportunities there now. I think Facebook is a really good option too because you can have conversations almost anonymously. You can talk about things with no one knowing the real you. In fact, we have really deep conversations on our Facebook page. We’ve created a safe place and people can come at the level they want to share.

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Lori:

Depending on how the Facebook page is created, some of them are private and information will never be seen by outsiders. Other groups are set up as public, so it’s important that you find those things out in advance.

The other thing I want to caution people about — and this goes for care partners, people who are interested in the disease as well as those with the disease — is, I’m sad to say, so many times people with dementia are being attacked by others. Some people tell them that they can’t possibly have the disease. Arguments follow, which saddens me because dementia looks different in every single case.

My mom’s dementia might look very different from the symptoms of somebody that you know. That doesn’t make it any less of a disease for the person going through it. In all our communications we have got to be respectful. Speaking our options is fine, but you should never put somebody else down. Instead, post questions to learn more about their case.

Margaret:

So when you say that people don’t believe someone has the disease, do you mean they base their opinion on how articulate the person is?

Lori:

Yeah, people are actually bullied, and it can get raw out there at times. The cool part about it is that everybody typically has a large group to protect them and to lift them up.

Margaret:

They stand up for each other. You’ve mentioned quite a few resources. We are going to put down links for all of them. Are they all on your site?

Lori:

They are not all on my site.

Margaret:

We’ll make a list then.

Lori:

Yeah, I’ll get those links to you.

Margaret:

That’s a really precious list to have because I think that many people don’t know about those resources at all. It just occurred to me as you were talking and I was dwelling on the community of Sixty and Me, we must have women in our community that have Alzheimer’s or dementia. The funny thing is, Lori, that I have never, ever heard anyone admitting it.

Lori:

Part of it is a safety issue. People think they would be looked at differently. But when you join these groups, you already know it’s okay. When people go to a Memory Café for the first time they are often resistant. Then they can’t wait to come back because it’s safe and fun. I’d like to mention two books that people rave about.

Margaret:

Yes, of course. Please do.

Lori:

One is by Mara Botonis, and it’s called “When Caring Takes Courage”. It’s a beautiful book with lessons on care in general, and dementia specific. The other one is Surviving Alzheimer’s by Paula Spencer Scott, and it’s an incredible book as well.

They’re easy reads. You can go back and reference them. They share stories, but they also give specifics. Both books focus on building tool kits to move forward with the disease cautiously.

Margaret:

I think it’s really important to have practical things that you can do. We will put both of those books up as they do sound wonderful. Of course, your site alzheimersspeaks.com is a good home base if you want to go there. We will put all of this information in the article. Is there anything we have missed? I want to make sure we share all the resources that are available out there.

Lori:

There are other things to find once people know that Facebook is an option. There are so many groups out there and so many sub groups within groups. Once you join a group, you will make significant connections because you’re going to be talking about serious, personal things.

One of the things that really threw people off in the past was that they didn’t believe they could create real relationships in there. I’m here to tell you, these will be very significant relationships in your life. I hear that over and over again from people who have joined in to try them and stayed.

Some people say, “I’m just going to see what the group’s like. I’m just going to read the comments.” What happens is, they learn from what they read. Then all of a sudden, one day they’ll be brave enough to write a comment. They’ll even say, “I’ve been here two years, and I haven’t’ felt comfortable enough. I do now, so I want to make a comment.” Others would jump in right away. There’s really no right or wrong way.

Margaret:

I love how you’re giving people a voice and lots of opportunities to talk about this, to actually engage in the real world. I think that is so important with all diseases, and Alzheimer’s in particular, because as you said, it could take years sometimes for people to be brave enough to share their stories; it has a shadowy side to it, and you can’t really define the problem by looking at the symptoms. So I think it’s really important to have people to bounce some ideas off and share your difficulties with.

Lori:

There are other groups, too, like the Alzheimer’s Association and the Alzheimer’s Society groups. Around the world, there are a lot of grasp groups and organized groups popping up, with different types of things to be able to participate in. You’re gonna hear and see more about Dementia Friendly if you were to tune into those words.

Margaret:

Dementia Friendly.

Lori:

Yes. You’ll be amazed at what you find and how often you find the information pop up.

Margaret:

All the information you’ve shared with us is so great we’ll have to get you back on in another year and get caught up. We will definitely stay in touch because I think what you’re doing is amazing, Lori. It’s really so valuable, and I’m grateful you’ve taken the time to share some of your knowledge.

Lori:

I’m happy to be able to speak to your audience. Actually, I just thought of this brand new group for care partners; it’s called The Dementia Caregiver Re-entry Program. It’s for people who have been on the journey for a significant period of time, are in the end stages or have already lost somebody. What this group does is help people go through the challenge of figuring out, “Who am I?”

That’s true in situations where they have to now place their care person in a day placement or someplace else to live. Maybe they have lost the ability to drive or do finances. Any of those things are huge losses, and the care partner has to figure out who they are all over again.

Sometimes they’ll have extra time or they’ll have home health come in for a few hours, and they don’t even know what they like to do for themselves anymore. So they have those discussions about finding yourself again and going through the grief and the loss and celebrating the new you.

Margaret:

That sounds like a fabulous group.

Lori:

Yes, it started here in Roseville, Minnesota. It hasn’t branched out anywhere else, but if anyone is interested in starting such a group, please get a hold of me. We have a lot of interest globally. People want to know more about this group because it’s just another phase to be dealt with.

Margaret:

It’s such a personal experience for everyone. You must have gone through this personally when your mom passed away. All the years you cared for her you were defined in a certain role. Now you have to reinvent yourself and enjoy your life. Question is, how do you do it? It’s really sad.

Lori:

Actually, I first went through it when my dad passed away. For a year I said, “I am going to start travelling once a month,” and “I’m gonna start taking different courses.” I had not a clue who I was. I just had such a void inside.

When my mom died several years later, I was a little more prepared, but you’re still never fully prepared for that void and how to fill it. Part of it has to do with being able to have a conversation that there is a void.

Grief counselling doesn’t help you fill that void; it just helps you understand the process. What care partners said — because we did a pilot program on this — is, “We don’t want it to be an eight-week program like grief class because then we are right back to where we were. We want it to be like a Memory Café where we meet new people and explore new things.”

Margaret:

Fantastic. Good luck with that wonderful initiative, Lori. It’s been really great talking to you on this topic. If anything new comes up just send me the details, and I can always add it to the article. Thanks again for your time and the amazing work you are doing.

Lori:

Thank you and keep up your work. I’ve been so impressed with how large your audience has grown. That’s wonderful.

Margaret:

It’s a large group, and they are engaged. They are talking and sharing, making friends and all the things you’ve talked about today regarding social engagement. We are pretty happy with our community, and we love our women. We love you so much, Lori. Thank you.

Have you ever attended a Memory Café? Would you think those gatherings are helpful for people with Alzheimer’s or dementia? Do you know of any such groups near you? Please join the conversation!

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