Architect of Change of the Week: Lori La Bey

This week, we honor Lori La Bey as our Architect of Change of the Week.

Lori is a woman who is truly moving humanity forward. She is the founder of Alzheimer’s Speaks, a company known for providing cutting-edge and accessible platforms for individuals to connect on the issue of Alzheimer’s and learn valuable information to support them and their families.

We spoke with her this week for our Sunday Paper Q&A to learn more.

1.) What does Alzheimer’s Speaks do?

Alzheimer’s Speaks is a Minnesota-based advocacy group that raises awareness and provides multiple platforms to educate and support those dealing with Alzheimer’s disease and other dementias.

Here are a few of our initiatives:

Alzheimer’s Speaks Radio: Talk radio dedicated to raising awareness and highlighting services, products, tools and concepts to shift our dementia care culture. The show is believed to be the first radio show in the world focused on dementia.

Memory Cafés: Memory Cafés are social gatherings for people with early memory loss and their care partners. They provide a supportive community in which to develop deep friendships. We played a major force in launching Arthur’s Memory Café in Roseville, MN, and in helping others throughout the county start their own.

Dementia Chats™: Dementia Chats are video conferences that elevate the voices of the true experts of this issue: those diagnosed with dementia.

Dementia-Friendly Communities: We ignited the spark that launched the first dementia-friendly community in the United States: Watertown, WI. This was a collaboration with the Lutheran Home Association. We provide continued support and consulting to help other communities in becoming dementia-friendly.

Purple Angel Project: We became an International Ambassador for the project, which is a new global symbol for dementia.The goal is for this symbol to be as well-known as the pink ribbon for breast cancer. It is free of charge and accessible to individuals and companies alike.

His Neighbor Phil: We are a platinum sponsor of this Hollywood dementia film, which highlights a wide range of emotions families struggle with, as well as the great depths of simple joys while on their path with dementia.

 

2.) What motivated you to become such a passionate advocate for Alzheimer’s and caregivers?

I lived more than half of my life trying to figure out how to live gracefully with my mother’s dementia. For 30 years, we walked hand in hand with Alzheimer’s disease as my mother taught me life lesson through the disease process that enhanced my life. I made a commitment to my mom to share what she taught me to help other families avoid the struggles we faced. Now I speak, train and consult both families, professionals and companies to connect on deeper levels. Through my emotional-based training, I believe others can see and feel the gifts wrapped in this unusual package called dementia.

 

3.) You speak about shifting dementia care from “crisis to comfort.” Explain what that means.

We are a nation that has leveraged fear to scare people to raise funds and buy products, thus projecting a mode of crisis. This year, fear was used front and center in our presidential election.

I believe we need to shift how we care for one another and ourselves from crisis to comfort. We need to assist families and professionals alike, by giving hope and support to live life fully.  We can do this by having open conversations, sharing life stories and lessons learned. We can shift the verbiage we use which will shift our expectations and outcomes. For example, we can use the words Care Partners and Care Companions, which projects a team effect based on relationships vs. caregivers, which projects a one-sided care model. We need to educate people that caring is a natural state of being and not one of crisis. That caring cannot be avoided, but can be improved.

I believe, we need to start having open and honest conversations about our “Care Culture.”  Most people aren’t even aware that we have a care culture or what it means. We need to start “Consciously Caring,” becoming highly attuned to our power of one. The power we each hold that affects others. The ripple effect of our actions and reactions; be it verbal or nonverbal.  We need to break the rule of separating people by diagnosis, position, race… getting all people together to share and be in touch with both their conscious and unconscious choices and how that reflects how they care for themselves and others.

When we can come together to provide a safe place for honest and respectful conversations we can begin to understand not only ourselves but others; bringing all together to focus on meeting the true needs of individuals, businesses and communities.

 

4.) Why do you think everyone should get involved with this important issue?

Dementia is not a disease of one, but of society. It knows no boundaries and all minds are fair game in it system’s eyes. The United States is way behind other countries in meeting the needs of those diagnosed and those caring for them. Every three seconds someone is diagnosed with dementia in the world, yet this is a very under diagnosed disease. Part of this is due to the stigmas attached to the disease and part due to the lack of doctors being trained to look for it.

Dementia alone can break not only our healthcare system, but our federal and county budgets along with our family structures and personal finances. We must work together to take aggressive action raising awareness of the dementia, utilizing the people’s language, putting support services in place and increase funding for research.

 

5.) What is one thing you want people to know?

I want people to know there is beauty in life even when disease and aging hits. I believe people only remember three things in life and that they will find only what they are looking. The three things are: Tears, Fears and Joy. Tears are for our grief and what we feel we have lost as we look through our review mirror into the past.  When we could choose gratitude for what we had. Fears are what we worry about as we project into the future.  Even though we all know much of what we worry about never happens. Joy is only available to us in the current moment of time. It is the only place you can find joy or create it.  If we spend too much time in the past or projecting into the future, we lose the opportunity to look for and find joy.

So, to all I say, “What do you want in your life?  What are you going to consciously chose to look for?  Know you are the only one in control of what you will find in life and what you will have left to remember.”

For more information on Alzheimer’s Speaks, go here.

This Q&A first appeared in Maria’s Sunday Paper newsletter. Sign up now to receive her reflection on the week that was and inspiration for the week ahead.

 

About the Author

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Lindsay Wilkes-Edrington is Shriver Media's digital director. She’d love to hear your ideas and feedback for the Architects of Change digital community! Connect with her here.

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