Four remarkable men and women courageously shared their personal journeys of living with young onset dementia (YOD) at the Expose Dementia Conference in Baltimore, Maryland. Their panel discussion, Speaking Our Truth, highlights the experiences of living with young-onset dementia (YOD) as they strive to foster meaningful connections, redefine their identities beyond their diagnosis, and focus on their abilities rather than limitations. Through open dialogue, mutual support, and a commitment to living meaningful, purpose-driven lives, they challenge stigma by reminding others that despite their diagnosis – as they said – “I AM STILL HERE”! Just like anyone else, they experience the full range of human emotions: happiness, sadness, fear, joy, and everything in between. Their feelings and lived experiences matter deeply, and this was their motive for “Speaking Our Truth”!
Guideposts for the Optimistics Support Group
The panelists who participated in the conference, along with others in their young-onset dementia community and Optimistic Support Group, have developed three main guideposts to outline their core values:
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- Living a Purposeful Life
Each emotion expressed by our panelists reflected their strong commitment to authenticity and their sincere intention to cultivate meaningful connections and a purposeful existence. They are focused on thriving rather than merely enduring, aspiring to create a lasting impact. By sharing their experiences of living with young onset dementia, they invite others to participate in the dialogue, fostering a collective understanding of what it feels like to receive their diagnoses in the prime of their lives.
Their weekly virtual Optimistic Support Group, coordinated by Daryl and Mike, both living with a diagnosis, and guided by all the members, provides a space to discuss challenges, share stories, build deep friendships, and foster mutual acceptance. Their openness enhances an awareness of a diagnosis that significantly affects many aspects of their lives while reminding them that they are not alone.
2. Redefining Identity Beyond Diagnosis: They Do No Want to be Defined by Their Diagnosis
The panelists shared a common determination to ensure that their diagnosis does not define them. They remain steadfast and shared their belief that dementia represents only one aspect of their lives and does not define the entirety of who they are.
Each panelist brought a distinct identity, a diverse array of interests, and vibrant passions that reach well beyond their medical condition. Despite the challenges they face, they are committed to living meaningful lives, pursuing opportunities for growth and fulfillment, and contributing to their communities with a sense of purpose.
3. Focusing on Abilities
Instead of dwelling on their limitations, the panelists intentionally direct their energy toward what remains within their reach. By adopting this optimistic outlook (hence, their name!) they empower themselves to embrace their strengths, adapt to new circumstances, and actively pursue activities that bring them both joy and fulfillment.
Shifting their perspectives does more than build resilience – it helps them recognize their successes, better navigate challenges, and continue finding meaning in their daily lives.
Reactions to the Panel
The following are a collection of reactions to the YES! panel and Expose Dementia conference as a whole from a child of a panelist and panelists themselves. As these quotes show, it meant a lot to be able to share their experiences.
“I was so proud to see my mom, Seena, speaking at the Expose Dementia conference. Teepa Snow being up there with her and the group was such an incredible bonus! The experience was something to look forward to with excitement, one that we now look back on as an honor and accomplishment. Huge thanks to the YES! Team for all they do and shout out to my mom for taking the mic and amplifying her voice!”
Daniel
“I have to say I don’t know how I would be if I hadn’t been introduced to the YES! group. It has truly been a blessing! I never imagined that I would ever speak on a panel in front of a group of people! After the panel, people came up to me to say thank you and asked if they could hug me! It helps me to share my story because it has been such a part of my life. It has brought sadness and pain to me watching my loved ones fade away. “The long goodbye”. I hate knowing that my kids have to watch me go through what they witnessed their grandparents go through.
I am trying so hard to stay positive and live my life as normal as possible and by staying active! I am hoping to have more time to enjoy the good things ahead. It gives purpose and hope.
Thank you so very much for your love, support and friendship. It truly means more than you may know!”
Tracy
“Being on the panel was powerful for me. It was my first time openly talking to others about my condition. Having my new friends next to me on stage who are going through the same thing was uplifting. Teepa Snow was an amazing speaker. I could feel her energy and passion. She made all of us laugh and find some lightness in what we’re dealing with. It was a great experience for me.”
Pat
