Lonely no more: The dementia expert bridging the care divide

“It takes two people to create an environment where our personhood emerges between us. But it only emerges if there’s a certain environment in place, in the same way a plant only flowers if there’s water and sunshine. What we have now are plants languishing in a dark closet. 

“We have experts that will teach you what to do for languishing plants. Or we could go to the closet, move the plant to the windowsill and add water. There’s water and sunshine that people with cognitive impairment are not receiving. 

“We’re spending more time trying to crack the code on languishing plants and fewer action steps of moving plants from the closet to the windowsill.”

American writer, speaker, documentary producer and teacher Michael Verde has spent the better part of the last 20 years peeling back the layers of judgement, assumption and stigma that society has placed on people living with dementia. 

His work with Memory Bridge, the organisation he founded, doesn’t teach a specific method or model of care. It brings people together to discover what they can learn from each other and about communicating.

When you listen to Michael talk, even for a short amount of time, there’s passion as he explores the ways to bridge the gap between people with and without dementia. This includes aged care settings, where even the best intentions in dementia care can ultimately be lost to task-oriented care. 

“If you’re not careful you have two people –  one trying to accomplish X in a way that has the least amount of self-exposure and the other trying to survive in an environment – presenting themselves at a level that’s not emotionally fulfilling. It can be at best transactional if it’s not toxic. This dynamic can be very difficult to break,” Michael shared with Hello Leaders.

“What’s not happening is a fulfilling interaction that both people need to feel like they belong or to receive the recognition that enables us to feel like a person. There’s an unconscious assumption that a person does not have a deep presence there and until that changes, the person with cognitive impairment will not feel like you’re looking at them or listening to them.”

Michael returns to Australia this month for his Lonely No More tour, bringing his Memory Bridge workshops down under with the support of Dementia Support Australia, Community Home Australia and Dahlia Dementia Guidance and Support. 

He will present multiple-hour workshops and a 90-minute presentation. The workshop topics are “Dementia without Loneliness” and “Dementia and the Meaning of Life.” The 90-minute presentation topic is “Dementia and Community.”

Screenings of Michael’s new documentary, Love Is Listening: Dementia without Loneliness” will also be hosted in select cities throughout Australia.

These workshops will explore effective communication that can help overcome the often unconscious assumptions individuals make when supporting people with dementia. Michael will also dig deeper into an understanding of person-centred care based on Tom Kitwood’s learnings around personhood, a status one person bestows on another in the context of their relationship. 

“For Tom Kitwood, person-centred care meant you were caring for a person’s personhood. Personhood is not something that I have inside me. It’s not something that you have inside you. Personhood is something that you bestow on me and that I bestow on you,” Michael explained.

“If that person with cognitive impairment is not getting emotional nourishment and is consequently acting out, you wouldn’t say, ‘What is it that I’m not providing?’ The logic chain would be, ‘Look at that dementia and how terrible it is. Joe must be in his aggressive stage.’

But if you can take the time to consider what it means to bestow personhood, Michael said you will start having educational and transformational conversations about what person-centred care is.

“We’re talking about things that we know how to do, we just don’t imagine it’s possible with people with cognitive impairment. I have to learn how to be myself, the same way I am with a friend, and realise that can be in play in this context.”

One such example can be found in Michael’s documentary Love is Listening where volunteer Darcy Weir builds a bridge between herself and an often non-verbal aged care resident named Harris.

Harris unfortunately had developed a bit of a reputation for inappropriately touching staff or making comments towards female staff. But after Darcy began spending time with him and bridged the gap between them, she bestowed a sense of personhood and helped him overcome those labels. 

“If you had asked the staff there what kind of care they provide, I promise you they would have said person-centred care. Had Darcy not come into Harris’s life, I would bet anything that Harris was going to live and die in that place a ‘dirty old man’ and no one would have ever imagined that there was something that Harris wasn’t getting,” Michael said. 

“Darcy had no other aged care training. She had three days of the ‘I am a Bridge’ experience. She told herself, ‘I’m not going to react in my typical ways when this man is doing or saying this, I’m going to choose to go against my instincts’ so she could see a side of Harris that wasn’t a dirty old man.”

As Darcy said herself in the documentary, “He’s saying things people think but he doesn’t have the filter. Am I going to reject him for not having a filter? The best solution is to reach across the divide… and I began realising Harris is a lot more than those things I had been told about. He was a very real human.”

More information about Michael’s upcoming visit is available at lonelynomore2024.org.