At CareProvide, we believe in sharing the real stories of those who live with and advocate for dementia awareness. Today, we are proud to introduce Mary Beth Wighton and Jessica Luh Kim, two inspiring women who are at the forefront of this movement. This article, accompanying the launch of our video series “The Faces of Dementia Advocacy: Mary Beth Wighton & Jessica Luh Kim,” aims to introduce their personal journeys and advocacy work, setting the stage for the deeper conversations to follow in the full discussion.
Mary Beth Wighton’s journey with dementia began over a decade ago, though the signs were present for several years before her diagnosis. She was diagnosed with probable frontotemporal dementia, a behavioural variant, at the age of 45. Now, 57, she continues to live well with her condition, challenging the disheartened prognosis she received.
When Mary Beth first heard the diagnosis, her doctor advised her to go home, put her affairs in order, and prepare for life in long-term care. It was an unimaginably tough moment, but Mary Beth and her partner, Dawn, chose a different path. Rather than succumbing to fear, they sought out support and education. This determination to live well with dementia led her to connect with Jessica Luh Kim in 2012.
Reflecting on that difficult time, Mary Beth says, “They told us to pack our bags and prepare for the worst. But thankfully, we didn’t take that advice. That’s when we got introduced to Jessica, and everything changed.”
Jessica, at the time, was working for the Murray Alzheimer Research and Education Programme (MAREP), focusing on involving people living with dementia and their care partners in research and education. Her mission was clear: to ensure that the voices of those living with dementia were heard and that their lived experiences guided the development of dementia care practices.
In 2012, Jessica first met Mary Beth and Dawn at their home, where the two sat at the kitchen table and discussed how they could work together. From that moment on, Mary Beth and Jessica forged a powerful partnership that has reshaped dementia care and advocacy in Canada. As Jessica describes it, “Mary Beth has been my best teacher, my best ally, and one of my closest friends. Together, we’ve achieved so much in our advocacy efforts.”
A Partnership Built on Respect and Collaboration
One of the most important messages Mary Beth and Jessica share is the power of collaboration. In many cases, individuals living with dementia are seen as passive recipients of care, but Mary Beth and Jessica challenge that notion. “When you flip it into collaboration, you change the whole dynamic,” says Mary Beth. “It’s not just about me and my family, it’s about Jessica and her family too. We’ve learned from each other and grown together.”
Jessica echoes this sentiment, emphasizing the importance of learning directly from people living with dementia. “It would be pointless to say that we are dementia experts because, no matter how much we study, we aren’t living with dementia. People like Mary Beth are the true experts. They know what they need, what they fear, and what will help them live well.”
This mutual respect has driven their efforts to advocate for change, whether it’s ensuring that people living with dementia are given platforms to speak at conferences or shaping national policies on dementia care.
Achievements in Dementia Advocacy
Together, Mary Beth and Jessica have accomplished much. Their partnership has led to:
- Advocacy for public speaking opportunities: Mary Beth has been featured as a keynote speaker at dementia conferences, a practice that was uncommon before their work.
- Documentary series: Collaborating with filmmaker Chris Wynn, they created a video series that highlights the stories of people living well with dementia, sharing real experiences and insights into the different stages of the journey.
- Shaping long-term care practices: Their work has influenced how long-term care and retirement facilities operate, always pushing for care practices that reflect the real needs of those living with dementia.
- Influencing policy: Their advocacy has helped shape national standards and policies on dementia care, always with the focus on giving voice to those living with the condition.
Living Well with Dementia: A Message of Hope
Mary Beth and Jessica’s story is one of hope and resilience. While a dementia diagnosis is life-changing, it doesn’t mean the end of a meaningful life. With the right support, collaboration, and advocacy, people living with dementia can continue to thrive, contribute, and live well.
For Mary Beth, living well with dementia means embracing each day and continuing to advocate for others. For Jessica, it means listening to those who live with the condition and ensuring their voices lead the conversation about dementia care.
As we launch our video series, we invite you to hear from Mary Beth and Jessica themselves in “The Faces of Dementia Advocacy: Mary Beth Wighton & Jessica Luh Kim.” This is only the beginning of a deeper discussion that we hope will inspire more people to get involved in dementia advocacy.
To sum up, the strength of Mary Beth Wighton and Jessica Luh Kim’s partnership has shown us that living well with dementia is possible. It’s not just about care, but about collaboration, respect, and advocating for a better world for people living with dementia. We hope their story inspires you, as it has inspired us, to see the faces of dementia advocacy not just as people needing care but as powerful individuals with voices that deserve to be heard.
Stay tuned for the full discussion and learn how we can all be part of this journey to make life better for people living with dementia.