Dementia Dialogue: Behind the Mic

David Harvey’s voice was familiar to me — I had heard it many times on his podcast, Dementia Dialogue. But as I sat in front of my laptop and talked to him face to face, it was the sincere intensity in his eyes that captured my attention.

Harvey had spent nearly 12 years as a director of the Alzheimer Society of Ontario (ASO) working with a team in public policy and program development. You may recognize such programs as First Link, Minds in Motion and Finding Your Way — Harvey had participated in developing these, trying to improve ASO’s policy and provincially securing programs that would provide substantial support for both people living with dementia and their caregivers.

His continuing devotion to creating change is evident as he now prepares the educational and informative Dementia Dialogue.

What is Dementia Dialogue?

Dementia Dialogue is a podcast created in 2017 that focuses on amplifying the voices of dementia. Funded by the Public Health Agency of Canada and Lakehead University in Thunder Bay, Ont., the podcast enables people to understand those living with dementia and to dismiss the common myths and stigmas that have plagued dementia since the 1800s.

When asked what motivated him to work so ardently into his retirement years, Harvey’s answer was simple — social change. Having been committed to social justice for most of his life, Dementia Dialogue was just the next step for him.

"We thrive and grow on our abilities to communicate and be understood, even more so for people living with dementia who are slowly losing their abilities to communicate verbally."

– Rose Ong

Promoting effective communication

Harvey’s approach is one of building partnerships and this colours the way he works. He uses the term “othering”, meaning people often think of other people as being different than themselves, when in reality we are more similar in many ways. He said he wants to open the door and narrow that sense of difference by encouraging communication.

He chose the name “Dementia Dialogue” because human beings are very intimate creatures. We thrive and grow on our abilities to communicate and be understood, even more so for people living with dementia who are slowly losing their abilities to communicate verbally. But those closest to them know they feel like we do but must communicate using touch and smiles, or simply a look in the eyes. There is much more to effective communication than just using words.

Heeding the voices of lived experience

Photo courtesy of Canva.

Harvey has learned much from his interviews with people living with dementia. He said that they have had to imagine other ways to express themselves and is impressed by their creativity and perseverance: It’s like if you want to do something, you must stick with it, and sometimes you have to rearrange your thoughts to find new ways to do things. You just have to be easy on yourself, knowing there will be days when it works and days when it doesn’t.

He has learned to have compassion for all the dementia challenges that others are going through or watching their loved ones go through. People tend to keep to themselves, and you don’t always see that side of people struggling with the life changes dementia brings.

Harvey’s own mother had dementia and so has two of his close friends. With his mother, he didn’t experience her changes until the later stage, as her generation was so hesitant to disclose their symptoms out of shame and the stigma that dementia made you less of a person, when the opposite is true.

But Harvey’s experiences with his friends who live with dementia had eye-opening benefits. One of them was a very open and caring person who found himself in the hospital after an injury about 18 months ago. Harvey said he has learned so much from him. For example, the friend had been chatting with a roommate, though his language skills were limited. Surprisingly, the friend said to this roommate while leaving, “You’re a really good man.” This proved that although he could not say much, the friend was tapped into his roommate’s emotional needs.

The future of Dementia Dialogue

Harvey revealed the future of Dementia Dialogue will be more inclusive and embrace community-produced episodes:

Community-produced episodes are podcast episodes that Dementia Dialogue plans to produce in partnership with people with lived experience who are more active in planning and producing the episodes. It is especially aimed at the voices of more marginalized people, including people with dementia and communities of recently arrived Canadians. As well, people from Indigenous communities will be invited to participate in deciding topics, selecting guests, hosting interviews and finalizing the episodes. The target listeners include people from these communities, as well as listeners from mainstream society.

In closing, as the dementia inner circle is beginning to realize, dementia largely creates a communication issue. The lyrics of the song “Relate” by Australian band For King and Country comes to mind:

“I don’t know what it’s like to be you,

You don’t know what it’s like to be me,

What if we’re all the same in different kinds of ways?

Can you, can you relate?”