Five Steps to Becoming an Advocate for Those Who Have Alzheimer’s: Lori La Bey Shares Her Story

Lori La Bey was sick of all the negative information about Alzheimer’s Disease.
As a family caregiver for her mom, Lori didn’t appreciate the fear that surrounded the subject. 
 “I wanted to talk about hope and joy and the positive aspects that empower caregivers and those who are diagnosed with the disease.”  Lori says. 
Lori had a lot to share on the subject. Her mother had been dealing with dementia symptoms since the mid 1980’s and in 1996, she received a formal diagnosis of  Alzheimer’s disease. Lori, then age 37,  understood the challenges and stresses of being a working parent and a family caregiver. She understood the issues that her mom grappled with as she lived with Alzheimer’s. She also knew the feelings of joy, hope, and connection that she and her mother constantly shared. 
Stepping Out and Sharing
 “You have to tell your story,” friends told her. In 2009, Lori began to blog, focusing on the positive aspects of her experiences with her mom. 
“People were thrilled to hear the hope in my stories; they were tired of hearing all the doom and gloom,” Lori says.
Blogging led to speaking and speaking led her to training the staff who worked in her mom’s care facility and then to training in other care facilities, organizations and businesses. In 2011, Lori started her Internet radio program, Alzheimer’s Speaks. She recently launched a resource directory, which allows both professionals and the public to share information, and she is a leading resource in helping communities become more dementia-friendly. She has gradually eased out of her successful real estate career and has devoted herself to “Shifting Caregiving from Crisis to Comfort.”         
Five Foundations for Advocacy
Here are some of Lori’s tips for becoming a more effective voice for caregivers and for those who have Alzheimer’s. 
Rename Yourself
Consider yourself a “Care Partner” instead of a caregiver. “Caregiver sounds like you’re giving it all away and in reality, you’re sharing,” Lori says. “When you give, you receive.” 
Start the Conversation
Don’t be afraid to talk about your experiences with dementia. Often, you’ll learn friends, coworkers and even strangers are dealing with the same issues. 
Share Your Story, Your Feelings and Your Truth
Lori knew being vulnerable when sharing her own stories and authentically expressing her moments of sadness, triumph, anger, frustration, weakness, and happiness allowed others to feel comfortable  expressing their own emotions and stories.
 “Discussing all your feelings invites deep conversations and helps you build amazing relationships,” Lori says.  “Life is not perfect and we have to stop pretending it is.” 
Set Your Priorities
Give up trying to please everyone. “Focus on pleasing yourself and the person you’re caring for,” Lori advises. “Everyone else is secondary.”
Seek Involvement
Join a support group or start one to help others. Sign up for a dementia fund raiser, such as the Memory Walk.  Get to know people who have dementia. Start talking about the disease – share what you know. It doesn’t need to be complicated. Take dementia on as a cause.  
lori la beyTo learn more about Lori and to hear our conversation with her click here on Alzheimer’s Speaks Radio.
For more information, please visit Lori’s website:   Lori La Bey, CSA, COS, AOSAD, Radio Host
Recognized by Dr. Oz and Sharecare as the #1 Influencer Online for Alzheimer’s!

Kindling Holiday Magic During Seasons of Change

“There’s a story behind these butterscotch brownies,” I told our Thanksgiving guests, as my brother Dan served dessert. “Mom created the recipe when Dan was six and became allergic to chocolate.”

There was a collective gasp as people imagined the horror of being allergic to chocolate. Then there were satisfying sighs as they tasted the melting sweetness of the brownies; Dan had re-created the recipe when my mother, disabled by Alzheimer’s, could no longer bake. Fortunately, Mom enjoyed sweets all her life and we always shared the story of these treats with her, reminding her how much we loved and appreciated her.

These brownies were one way my brother and I honored our mother during the holiday season.

I recently reached out to several exceptional people for advice: how do we take care of ourselves and our loved ones who have Alzheimer’s during the holidays?
Here are their words of wisdom:

Let go of the Past and Embrace a Plan 

Linda Moore, PhD, psychologist and author of What’s Wrong With Me?, reminds us to separate our feelings from the facts. For example, a caregiver might think, “My mother’s Alzheimer’s is going to ruin my holiday,” instead of realizing,  “‘My mother’s Alzheimer’s may make my holiday different.”

“Once you can understand the holiday celebration may be different, you can plan and orchestrate a gathering that supports a person who may be less mobile, less verbal and less able to hear and understand,” Dr. Moore explains. “The planning helps diminish the emotionality in the situation.”

Tailor the Celebration

“Caregivers must be willing to adapt to the condition of the person with dementia,” says Dr. Ethelle Lord, a pioneer in Alzheimer’s coaching. “If people with dementia still enjoy opening gifts and seeing all the decorations, then go for it. If they no longer recognize the decorations/gifts, simplify their celebration.”

Tailor their holiday to meet their needs, while finding ways to honor your own holiday traditions.

Find Comfort in Memories

“Many people with Alzheimer’s can relate to the sights, sounds, and aromas of the holidays,” says health and lifestyle expert Stephanie Stephens. Stephens felt her mother, who had been diagnosed with Alzheimer’s, still knew that “something was special” during the holiday season.

For Stephens, the holidays brought forth a mixture of joyful and sorrowful emotions. She comforted herself by remembering the many Christmas mornings of her childhood. She reviewed old photos from holidays past and held on to the memories, cognizant that those days were gone and this was now.

“Cherish your memories and find comfort in the spirit of the season,” she advises.

Take the Party to Them

“If your relative with dementia is in a long-term care home and it’s difficult for them to move about, take the party to them,” suggests Eleanor Feldman Barbera, PhD, author of The Savvy Resident’s Guide.

Decorate their room in a festive manner. Reserve a private dining area or lounge in the care facility and invite friends and family over to celebrate.  Or encourage family members to visit in small groups over the holiday weekend, bringing food, stories and presents to enjoy.


Deborah Shouse is the author of Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey. For a signed copy, contact Rainy Day books:  913-384-3126

Please learn more from and about these wise people.

Dr. Ethelle Lord
Stephanie Stephens
Eleanor Feldman Barbera, PhD