Let This Be a Symphony

01/09/2026

It took Phyllis Fehr five years to receive an Alzheimer’s diagnosis. Now, her lived experience is helping change dementia diagnosis and care in Canada.

Last summer at in Toronto, we met Phyllis and The Brainwell Institute CEO Dr. Saskia Sivananthan on the very day their Mind the Gap report was released.

Together with the Brainwell team, they brought lived experience and research together to expose the gaps people living with dementia and their families face in navigating diagnosis, support and care — and to make the case for a more connected system.

A year later, that work has helped lead to real change, including the creation of an Ontario Dementia Task Force.

As World Alzheimer’s Month begins, we’re looking back at where this work started, and celebrating how far it has come.

Read Brainwell Institute’s Mind the Gap report: https://brainwellinstitute.org/mindthegap/

29/08/2026

“I’ve made the best of it that makes me want to live for tomorrow.” — Mark Roberts

Our dear friend Mark Roberts, co-founder of the National Council of Dementia Minds, passed away on August 14 after living purposefully with vascular dementia for 12 years.

We’ve had the privilege of filming many times with Mark and his wife, Brenda, at their home in Alma, Michigan. Mark trusted us and let us into his life with warmth, humor, and enthusiasm. He welcomed every opportunity to share his story in the hope that it might benefit others.

As Brenda recently wrote, “He wanted professionals, families, and communities to better understand dementia by hearing directly from people living with it.”

This clip is from an interview we filmed on their back porch in 2023. Later that day, Mark gave me incredibly useful advice on care partnering and, with characteristic humor, on how not to hold a camera :)

Thank you, Mark. We’ll carry your words and wisdom into our tomorrows.

11/08/2026

"Whatever our role is, right now, it matters."
- Susan Schneider Williams

When the legendary and much-loved actor Robin Williams died, 12 years ago today, no one knew what he had been living with. Only after his death did an autopsy reveal the devastating extent of Lewy body disease in his brain.

For his wife, Susan Schneider Williams, that discovery became the beginning of a quest to understand the litany of complex symptoms Robin had experienced.

She immersed herself in the science, spoke with leading researchers and clinicians, and then used her voice to bring attention to a disease still poorly understood by much of the public.

For his wife, Susan Schneider Williams, that discovery became the beginning of a quest to understand the disease behind the litany of complex symptoms Robin had experienced.

She immersed herself in the science, spoke with leading researchers and clinicians, and then used her voice to bring attention to a disease still poorly understood by much of the public.

Her advocacy helped families find language and community to better advocate for themselves. And it helped bring new attention to the urgent need for better recognition, diagnosis and research into Lewy body dementia.

Today, we're resharing the video we created with Susan last year. It celebrates the creativity she and Robin cultivated, and how that connection offered a way forward during some of their darkest moments.

Thank you, Susan. Thank you, Robin

Today, we're resharing the video we created with Susan last year. It celebrates the creativity she and Robin cultivated, and how that connection offered a way forward during some of their darkest moments.

Thank you, Susan. Thank you, Robin

As National Family Caregivers Month comes to a close, we spotlight ...

10/08/2026

“The not knowing is what was the scary part, where the memory would just fade out. Once I knew what was happening, then I understood, and so therefore I could move forward.” - Julie Chenault

The 19th recently published this story featuring three women living with Young-Onset Alzheimer’s, a great example of strengths-based reporting that reflects the agency and empowerment that can come with an early diagnosis.

"The first thing that I felt was relief because I had answers. Then came the terror and all the bad stuff. But once you go through that grieving process, I could make a decision about what I wanted the rest of my life to look like. And that decision was: I am going to live the rest of my life in the most beautiful way I can."
- Kerry Dennis

As more individuals receive earlier diagnoses, we hope to see more of their varied voices and experiences represented. And more reporting that reflects the full range of what it means to live with a dementia.

“My mom was diagnosed in 2003 — 20 years before I was. We just didn’t know what was going on then. There wasn’t much out there about Alzheimer’s. The organizations weren’t fully developed yet. They didn’t have the treatments they have now.” - LauraLee Denler

We love !

Read the full piece here:
https://19thnews.org/2026/07/women-alzheimers-early-diagnosis/

03/08/2026

"Stigma makes me feel angry because there is no need for it in this day and age."

Seventeen years ago, the Alzheimer's Society released this powerful video about dementia stigma.

Seventeen years later, people living with Alzheimer's and related dementias describe the same shameful discrimination.

Recently, a collaborator told us:
"Nothing has changed! We don't need dementia advocates. We need activists."

These quotes from the video say it all:

"People look at me and they say, 'You don't look as if you've got dementia.' I mean, how do you look when you've got dementia? Yes, I'm not stereotypical from the point that I'm not old or I'm not in the older person's bracket, but it does happen to younger people and you just have to accept it and make the best of it and get on with your life. It's not a death sentence."

"The name and the illness doesn't go together at all. I am not demented ... people should understand that we're not lepers. We're not people to be ignored. We still want to be talked to and treated just like any other human being could be treated with respect."

"I think with more awareness, more education, people would realize that it's not contagious."

"You get situations where automatically if I've got Dave [my care partner] with me, they will automatically talk to him and ignore me. And I have at times been sort of almost stood up and said, 'I'm here. It's me. Talk to me. I still can't talk to you. I still can't understand what's going on.' And that does make me angry, yes, when people just write me off. I'm not ready for that quite yet.

"Now that I've got dementia, I have to be very careful who I tell. Some people literally will drop me off a stone and walk away and I'll never see them again. It's
as if they can't cope with it. There's a lot that we can do to banish stigma and start from young children because they're far more adaptable than people think they are and they understand more."

https://www.youtube.com/watch?v=a5fXB0aHOVw

People with dementia speak out about the impact stigma has on their...

03/08/2026

“The relationship you build is as important as the food.”
— Chef Michael Jackson, Chefs for Seniors | Metro Detroit

This video is a special collaboration between filmmaker Michelle Memran, her mom Sue and partner John, and Chef Mike from Chefs for Seniors in Metro Detroit.

Over the last few years, Mike has become part of their family, preparing delicious, affordable meals with warmth, buoyancy of spirit, and hearty laughter.

During a recent visit to Ann Arbor, Michelle captured Mike in action to show how this service works, and how it can help support people who want to age in place.

After every visit, he sends Michelle a photo of the meals he made, along with a text update. Sometimes it's about the food. More often, it's about the connection:

"We had good conversations about growing up in Detroit. I always enjoy them."

“Really good visit with your mom and John today. They were able to sit and chat with me almost the entire time. Good people!"

We hope this story encourages more families to explore this kind of support, where nourishing meals are only part of what's shared.

Thank you Mike, Mom, John, and Chefs for Seniors for your enthusiasm and willingness to share this story!

29/07/2026

"The most meaningful support comes from people who have chosen to walk alongside me ... People walking alongside me, not in front of me and not behind me."

- Bill Yeates, ADI Board Member, presenting at

At this year's Alzheimer's Association International Conference in London, we had the privilege of walking (and filming) alongside Bill Yeates.

Since his diagnosis of young-onset Alzheimer's in 2019 at the age of 59, Bill has become a global advocate, ensuring that the voices of people living with dementia are heard and centered.

One of the most meaningful stories he shared was about his friendship and creative partnership with Kay Hughes, a musician, artist, care partner, and fellow advocate.

The two first met while speaking at the same event, when a lightbulb went off ('what if we combined our perspectives into one presentation!'). Now they co-design talks weaving Bill's lived experience with Alzheimer's together with Kay's music and perspective as a care partner.

"Kay is able to see me as a person, not as a person living with dementia," Bill shares. "I can sense that there's authenticity in what Kay's trying to do. And out of that has grown a really nice friendship."

“We normally walk next to each other, but occasionally I have to dart ahead, or dart back behind,” Kay says, as Bill chimes in, laughing: “You’re in front of me, you’re behind me!”

Their friendship and artistic collaboration bridge the all-too-common divide between perspectives of people living with a dementia and those of care partners. It’s a beautiful example of organic, authentic co-creation (a big buzz word at this year’s conference).

Thank you, Bill and Kay, for entrusting your stories with us. Stay tuned for more!

01/07/2026

"I don’t feel like it’s the end of my life. There’s work to do ... I want to just say, your life continues." - Danny Glover

Bravo to actor Danny Glover for choosing to share his Alzheimer's diagnosis on his own terms.

Bravo to his family and community for lovingly supporting that decision.

And bravo to The Guardian for leading with his words and perspective, rather than reducing his story to a clickbait headline.

Glover reminds us that a diagnosis is not the end of a person's identity, purpose, or voice. You can read the full piece here: https://www.theguardian.com/film/2026/jul/01/lethal-weapon-star-danny-glover-reveals-alzheimers-diagnosis

"Glover, 79, announced the news during an interview on The Today Show, during which he explained that he had been diagnosed “not long” after receiving an honorary Oscar in 2022. 'I could live with it, in a sense. I’m sure as it advances, things are going to be different and changing,' he said, adding that his movements, speech and memory have slowed. However, the support of his family, who he said 'have got my back,' was getting him through.

In the interview, Glover’s daughter Mandisa added that it was 'really important' for him to speak on his own terms. 'And the time is now. What better time but now for him to speak for himself? It’s important because people ask questions sometimes, and I don’t want to be a dishonest person and say, ‘Oh, yeah, everything is all right. It’s all great’,' she said.

Glover also spoke about his diagnosis with People, in which he said he was 'still not accepting in my mind all parts of it'. 'There are the moments that you keep remembering that validate the fact that you can remember stuff. And there are moments I’ll never forget,' he said. Glover added: 'I don’t feel like it’s the end of my life. There’s work to do. I still have my daughter, I have friends. I want to just say, your life continues.'”

21/06/2026

"We create ramps for people in wheelchairs. How do we create accommodations for people with changing cognitive abilities?" Dr. Allen Power

For decades, Dr. Power has challenged how society sees and understands changing cognitive abilities.

Through his seminal books, "Dementia Beyond Disease" and "Dementia Beyond Drugs," and in talks around the world, he has helped transform dementia care and advance human rights for those diagnosed.

“When you label someone as ‘less than,’ it doesn’t just shape attitudes,” he told us. “It shapes policies. It shapes care. It shapes the way we value their very humanity.”

Today we shared our video short with Dr. Power on YouTube, below. Join us there and subscribe to the channel (it's free!) https://www.youtube.com/

Thank you Al for being such a North Star and illuminating the way.

More on his work here: https://the-ria.ca/research/meet-our-researchers/allen-power/



https://www.youtube.com/shorts/fgAi-6PDsIo

We recently sat down with our friend Dr. Allen Power — geriatrician...

07/04/2026

This , neurologist David Brodie-Mends takes us inside West Africa’s first Stroke Unit at Korle Bu, the hospital he calls home.

Featuring interviews with Korle Bu's Stroke Unit Staff, this short documentary not only highlights the hospital's collaborative, multidisciplinary approach but also the incredible connection among colleagues who have become family.

At the same time, it offers an honest perspective on providing care within a healthcare system shaped by limited resources, revealing both the challenges and the resilience of those on the frontlines.

This year, the World Health Organization invites us to celebrate science in action by sharing stories, and this one feels particularly resonant.

With gratitude to Korle Bu Teaching Hospital, Dr. Brodie-Mends, and the entire Stroke Unit Staff for their warmth, trust, and generosity.

To view the film on YouTube, click below or visit: https://youtu.be/GTNPGEL6b0Y?si=py_fyHVmSfqLS6JC

For Atlantic Fellow and neurologist David Brodie-Mends, Korle Bu Teaching Hospital in Ghana isn’t just where he works. It’s home. This , he ta...