In celebration of World Alzheimer’s Day, we’re launching a special video discussion featuring Mary Beth Wighton and Jessica Luh Kim. Together, they share their personal journey and expertise on living well with dementia, a message of hope and connection that we believe will resonate with many. Here, we summarize the key insights from their inspiring conversation.
The Power of Partnership
Mary Beth, who was diagnosed with frontotemporal dementia over a decade ago, emphasizes that her life did not follow the grim path initially predicted by her doctors. Instead of isolating herself, she sought connections and became an advocate for those living with dementia. Her collaboration with Jessica, a passionate advocate and educator, has been pivotal in reshaping the narrative around dementia.
One of the most powerful messages they share is the importance of partnership. Mary Beth and Jessica highlight the importance of ensuring that the voices of people living with dementia are heard and always included. This partnership isn’t just about caregiving, it’s about collaboration. “When you flip it into collaboration, you change the whole dynamics of the relationship,” says Mary Beth. Instead of being passive recipients of care, those living with dementia become equal partners in shaping their care, their surroundings, and their futures.
Challenging Myths About Dementia
A major theme in the discussion is dispelling the common myths surrounding dementia. One of the biggest misconceptions is that people with dementia cannot make decisions or lead meaningful lives. As Jessica points out, “People with dementia can still make choices and contribute in many ways.” It’s about adjusting how we offer choices and support. Instead of overwhelming a person with too many options, simple alternatives can make all the difference. For example, instead of asking, “Would you like to go out on Monday, Tuesday, or Friday?” simplifying the choice to “Would you like to go out on Monday or Friday?” can make decision-making easier and more empowering.
Another myth they challenge is the belief that people with dementia are fading away. Mary Beth shares, “I feel more colourful, more alive. I have memories that make me laugh.” She talks about the vibrancy of life even with dementia, where music, art, and meaningful engagement play a huge role in staying connected to oneself and the world. Jessica adds that many people living with dementia are still deeply aware of their surroundings and emotions, and can remain engaged with proper support.
Redefining Living Well with Dementia
Living well with dementia doesn’t mean living without challenges, but it does mean finding new ways to adapt and thrive. Both Mary Beth and Jessica emphasize creativity in this process. People with dementia often find new forms of expression. Mary Beth, for instance, turned to writing, something she had never done before her diagnosis. Others may discover talents like painting or music, which helps them stay connected to their emotions and communicate in different ways.
Technology has also become a powerful tool in this journey. Mary Beth shares how she uses technology to stay connected and manage daily life, while Jessica highlights examples of people living with dementia who use digital assistants like Alexa and Siri to help with everyday tasks.
Family Support and Hope
Family plays a crucial role in helping people with dementia live well. However, it’s important for families to recognize that their loved one with dementia is still capable of making choices and living a meaningful life. Mary Beth talks about the importance of having open and honest conversations, where family members actively ask how they can help in specific ways, rather than assuming what’s best.
Equally important is the concept of hope. At the time of diagnosis, hope is often taken away, with many being told to simply prepare for the worst. But as Mary Beth points out, “We need to change the medical model to a human rights model—one where hope is not stripped away.” There are many people, like Mary Beth, who have been living well with dementia for many years, showing that a diagnosis is not the end of life, but the beginning of a new chapter.
Conclusion: A Message of Empowerment
As we celebrate World Alzheimer’s Day, we are reminded of the importance of empowering people living with dementia. The insights shared by Mary Beth and Jessica encourage us all to challenge misconceptions, offer support in meaningful ways, and always approach dementia with hope and understanding. Every individual’s experience with dementia is unique, but with the right support, they can continue to live vibrant and meaningful lives.
To dive deeper into Mary Beth’s personal journey and advocacy for those living with dementia, we encourage you to explore her powerful book, Dignity & Dementia: Carpe Diem. In this book, Mary Beth shares her story with courage and honesty, offering invaluable insights into living with dignity in the face of dementia. It is a must-read for anyone seeking a deeper understanding of dementia from the perspective of someone who lives with it every day.
You can find Dignity & Dementia: Carpe Diem here.
This article, along with the full video discussion, invites you to learn, connect, and take part in creating a more compassionate and inclusive world for those living with dementia.
Additional Resources:
For those interested in exploring further, here are some valuable resources related to dementia.
- Paul Lea’s Website – Insights and experiences from Paul Lea.
- Dr. Allen Power of Research Institute for Aging – Research and perspectives on aging and dementia.
- By Us For Us Guides – Practical tips and strategies from people living with dementia and their care partners.
- In the Moment – A resource for family members supporting loved ones with dementia.
- Christine Bryden’s Website – Christine Bryden’s journey and insights on living well with dementia.
- Alzheimer Society Landmark Study Report 2 – Comprehensive research on dementia in Canada.
- Dementia Action Alliance: Calling All Voices Project – Includes podcasts and white papers on diverse perspectives in dementia care.
For more information on how we can support you and your loved ones through every stage of dementia care, explore our Care Services. Our dedicated team is here to offer compassionate and comprehensive support tailored to your needs.