5 Tips for Including a Person with Dementia in Important Events: Lessons from the Cleveland Cavalier
My hometown basketball team, the Cleveland Cavaliers,’ won the 2016 NBA Finals. Unless you come from Cleveland, you have no idea how important this is to Clevelanders. We have not won a major sports championship in 52 years!! Cleveland has never been able to outrun its’ label of “mistake on the lake,” and people are always joking about how terrible Cleveland is. However, those of us who were born and raised there know how great our city is and we really want everyone else to know how wonderful Cleveland is too. The Cavaliers’ win is an important way for our overlooked city to be seen by the country and be taken seriously.
No one knows this more than local Cleveland couple Luanne and Bob Becker. I met Luanne and Bob on Luanne’s Facebook page, Too Young For Alzheiemer’s, which reflects on her journey with her husband, Bob, who was diagnosed with young onset Alzheimer’s disease in 2012. Eventually Luanne and Bob started coming to the Montessori based art program I ran through the Carolyn L. Farrell Foundation for Brain Health and we became friends.
On the day of the Cleveland Cavaliers’ Championship Parade, I was overjoyed to see photos on Facebook of Luanne and Bob at the parade. Luanne and Bob spent their career focused on filming documentaries about Cleveland, and many of them were about sports. Their documentary, “Home Team,” a PBS Documentary (Public Broadcasting System), was about baseball and it won Luanne and Bob their first Emmy together. Bob and Luanne dedicated much of their work in documentaries to sports in Cleveland. When they were doing research for their documentaries, much of what they saw was from the 1948 World Series, which the Cleveland Indians won. Luanne said; “There was a huge parade and I remember looking at the newspaper articles with Bob and saying ‘Wouldn’t that be amazing? Do you think we will ever see that in our lifetime?’”
On June 22, 2016, they were able to see such a parade in their lifetimes, even though Bob is living with dementia and has a lot of limitations. Luanne said she considered not taking Bob to the parade. Going alone would have been easier, but going together meant they could share an event they had always dreamed about.
One of the things that accidentally happens with people with dementia is that we make their world smaller and smaller by not including them in life events- going out to dinner, community events, the theater, church, etc… However, there are a lot of care partners, in all different kinds of situations, that do take their loved one with dementia to as many events as possible, like Luanne did with Bob.
So, how did Luanne do it? Luanne did say that if Bob had been in a wheelchair or unable to walk, she is not sure this could have happened. However, she was able to find a way and here are a few tips that she shared with me:
1. Think of the common issues your loved one may have at the event in order to create a plan. The day before the parade, Luanne said her goal was to get gear for the parade to avoid some of the common issues that happen at events with Bob. Bob does not do well in crowds, and he is easy to lose because he will follow people whom he thinks look interesting. He will just turn around and walk away. Also, Bob is pretty much non-verbal so he can not ask for help or respond to questions people might ask him. Bob can still walk well, but he does get tired easily. He may or may not like large events on any given day and want to leave. The event could also possibly be very hot and sunny.
2. Create a plan with gear and logistics. Luanne’s kit for the parade included Cavs Finals shirts (of course!), two small lightweight folding chairs (for when Bob gets tired), a few cooling towels, and Gatorade. Luanne also got a reflective running vest for Bob so that she could see him easily if he walked away, and if she needed to describe him to others in case he got lost, the reflective vest would be easy to describe. Since Bob wanders away, Luanne also found an exercise band that had loops on both ends that each of them could hold onto to keep them connected to each other. She researched a driving route using back roads and found parking that was accessible for them.
3. Try and keep your day as routine as possible. Wake up at a usual time. Try and get to the event around the same time that you would do other activities during a normal day (even if that means being late or early for an event). Try and be home at the usual time you would get home for the day. Luanne was also able to help Bob know that an event would be happening by making the Cavs Finals part of their normal routine for days leading up to the parade. Bob and Luanne had watched the game a few days earlier and had been talking about the Cavs’ win, so this repetitive focus on the Cavs and the game may have allowed Bob to stay connected with the event enough for him to have continuity and excitement about the parade. Luanne was also able to ask Bob if he wanted to go to the parade beforehand, and he said “yes.”
4. Don’t let other people’s perceptions deter you. When you take your loved one with dementia out, people may feel free to comment on how you care for them. For example, a few people commented and laughed about Luanne having her “husband on a leash.” She said to them: “He has Alzheimer’s and I am glad he can be here.” The cord was also a support for him because it made him feel safer in a crowd because he always knew he was with Luanne. The cord also got rid of the need for any “nagging” by Luanne of turning around and asking if he was okay, telling him to follow her, and reminding him to keep near her. This made the event more enjoyable for both of them.
5. Know their limits and don’t push them too far. Luanne gave Bob as many choices as possible by asking him where he would like to sit, asking him if he still wanted to stay, and generally checking in with him. When he was ready to go and got really tired, they left. You need to know their limits and when to leave. You do not want to get to the point when you have pushed them over the edge and they are agitated and/or unable to function.
All of this preparation created a great event. Luanne said Bob was smiling, especially when she was excited about when the team went by. He really understood what was going on and he was smiling and laughing.
When I asked Luanne what it meant for them to be able to go together she said: “It means we are still together. We are still doing what we do. If I had gone alone there would have been a wistfulness that he was not there. I would have been at something that I could not have described later to him because he does not understand words that well. It would have been empty not experiencing it together.”
“Many of the documentaries Bob chose for us to do during the 15 years of our production business were sports documentaries. We are life-long Clevelanders. I told Bob, ‘Your grandkids will say ‘Grandpa were you there?’ And I will say ‘Yes. He was there. And it was an amazing, once-in-a-lifetime event for both of us!'”