We can talk endlessly about people living with dementia, but the conversation only becomes meaningful when they are active participants in the conversation. 

During the recent 2024 Validation World Congress: Connecting Heart to Heart with People Living with Cognitive Change, we heard from five individuals who shared their journeys with dementia. Their advocacy and insights, when we listen and act, are what forms change and make a real difference.

The result was an incredibly powerful and impactful experience that I will likely never forget.

Nothing about us without us

Steven Barbieri, a retired bank executive living with CTE dementia, talked about the frustration of being ignored or dismissed. He observed, “I want to be included in every decision while I am still capable of making decisions. I hate it when people have conversations about me in front of me. I want to be involved.”

Dona Denham, a retired accountant living with Lewy Body dementia, added, “Especially early in the diagnosis, make modifications, but don’t take over. I can still do a lot of things. Let me participate for as long as I can. That’s important to me.”

Krissan Moss, BSN, a retired nurse and educator living with dementia with Lewy Bodies, said, “We need a tribe of people to participate in our care and our lives, and we need to form this while we still are able.” She further noted, “I want them to partner with me and include me.” She advised, “Meet us where we are. Join our reality.”

Family as dementia care partners

Families, particularly spouses, play a key role in the lives of people living with dementia. However, it’s important to remember that they are family first before they become caregivers. 

Barbieri said, “I want my spouse to be my spouse for as long as possible.” Moss added, “It’s important to me that people who love me don’t let their own health suffer. I don’t want people to sacrifice themselves to care for me.” 

Barbieri agreed, noting that he encourages his wife to get away with her friends sometimes. When this happens, neighbors and others are available to help as needed.

Another valuable takeaway I learned from this event was the importance of remembering that everyone is constantly on a learning curve: spouses and other family members, care partners and the individual themselves. 

“We have to understand that our families love us, but they are still learning about dementia and what is happening with us,” said Moss. At the same time, Denham explained that families sometimes know more than anyone realizes. For instance, Denham told a story about an incident when she was in a noisy, crowded place but couldn’t express her anxiety. Her husband noticed that she was standing in a corner and was able to help her.

The power of peer connections for people living with dementia

Everyone agreed that peer support is helpful. As Barbieri said, “We share the language of dementia. We can understand and relate to each other.” Moss added, “Being part of a support group validates our losses and struggles. It’s very reassuring to know that others are feeling some of the same things we are.”

Connecting with others living with dementia also gives people an opportunity to share the positives as well as the negatives. “I try to count my blessings, not my challenges. I had to leave my job and retire five years early, but I have been able to spend more time with my family,” said Barbieri.

This is why I truly believe that organizations like The National Council of Dementia Mind are creating the future of dementia care. Anyone interested in understanding and improving the lives of people with cognitive change should actively consider reaching out 

Listening and empathizing

Denham stressed, “Don’t dismiss things happening to me because you don’t understand them. We may look and communicate fine, but there is much going on in the background. It may be tempting to try and make people feel better when they make a mistake or forget something by saying something like, ‘Oh, that happens all the time’ or ‘I do that too.’” 

However, Denham said, “It’s also frustrating when people do that — when they try to make things all sunshine and rainbows.” Instead, she suggested the value of striking a balance: “Don’t minimize things but don’t make a big deal of them either. I need you to be normal. Don’t over- or under-react.”

The group consensus was that if someone living with dementia says something is wrong, don’t rush to correct it, particularly if it’s not important. For instance, if they say it is 3:00 p.m., but it’s really 6:00 p.m., let it go if it doesn’t matter. “When we make simple mistakes, just close the door without saying anything,” said Moss.

Dying with memories, not dreams

People living with dementia still want to live, and they need their families and friends to encourage and not deter them. Barbieri said, “I want to die with memories, not dreams. The best thing you can do is help make things happen when they are possible. Quality of life is still very important to us.” Moss noted, “We also are creating memories for others to cherish after we’re gone.”

Listening to these individuals is the kind of experience that makes me more committed to my work than ever. We owe it to them to do everything we can to meet their needs, treat them with respect and dignity, help them create memories, and make sure there is quality of life in every day. 

Saving the most important for last, the event was an amazing tribute to the life and accomplishment of the “Godmother of Dementia Care,” Naomi Feil. She founded the Validation Training Institute to spread the use of the Validation Method. The energy, dialog and response to the event were incredible and make me deeply convinced that her work and legacy will carry on.

You can watch it here.

Charles de Vilmorin is the CEO and co-founder of Linked Senior, creators of the Life Story product.

The opinions expressed in McKnight’s Long-Term Care News guest submissions are the author’s and are not necessarily those of McKnight’s Long-Term Care News or its editors.

Have a column idea? See our submission guidelines here.