I had the good fortune to attend the Alzheimer’s Association Summit in San Diego. Four days of listening, learning, and interacting put my brain on extreme overload and I want to share some of this with you.
Each evening when I called Lynn to give him a daily briefing, he could hear the exhaustion in my voice. Not only was I gaining knowledge about this terrible disease, about potentially life-saving drugs that have passed through clinical trials, about how to recruit volunteers (you!) and ways to protect my caregivers and their loved ones, each moment led me close to tears as I thought about Mama and my sister Carole who died from this heart-wrenching disease.
Key concepts: connections; my story; empathy; trust; inclusivity; partnerships. I know you recognize how each term links to the next and how all of this ties together to a group effort to understand Alzheimer’s and other dementias as well as how we as a community, as tri-county allies, and as Nevadans can unite. Any time I am in unfamiliar territory, as in meeting new people, I survey the scene and seek like-minded partners. Being able to connect on common ground sets me into a flurry. Networking is simple at a conference such as this as we all are facing similar challenges and worries so I reject my nervousness and realize ease.
Next, we worked on “My Story”. This is the one-minute “elevator speech” as to why I am involved and dedicated to the Alzheimer’s Association. Readers know my many connections to this disease. My newest message is encouraging Medicare and Medicaid to approve payment for the latest drugs, Aducanemab and Lecanemab. Instead of masking side-effects these actually attack the biological underlying causes of Alzheimer’s. Early detection of dementia is essential as that’s when these drugs work. Pre-approved they are precursors of treatments to come.
Knowing my background with Alzheimer’s disease, you can sense the empathy I hold for caregivers and care recipients. I appreciate their moments of shared, sudden lucidity just as I sense their pain as day by day a loved one descends into the mighty grip and cruel ending ahead. With this comes trust. I have traveled this journey twice with family and multiple times with the dear members of our Winnemucca Alzheimer’s Support Group. Because they know I care, they are able to open up with honesty as they release the frustrations and worries of caring for someone with dementia. They also trust one another. Many of my attendees have lost a loved one and are able to share their “You Are Not Alone” story.
One of the goals of our support group as well as Age- and Dementia-Friendly Winnemucca and Humboldt County (as well as anyone else who would benefit from us) is inclusivity. Black and Hispanic Summit participants discussed how their families work together to care for loved ones in an all-inclusive, regardless of cognition, united front. I thought about this and thought about what happens in many other situations where the loved one with dementia is hidden away from prying eyes as interaction becomes confusing and hurtful. This operates in multiple directions as caregivers shelter loved ones from potentially embarrassing encounters by staying home and away from the public just as friends disappear because they are unsure of what to say and do. While there is no one-size-fit-all solution to either of these, kindness prevails.
Finally, partnerships. What are you willing to do to improve your community through the prior ideas. How do you connect? Age- and Dementia-Friendly meetings are one way. Have you created your dementia story? Perhaps you are one of the lucky few who have no direct connection to this, but most of us have seen it up front and personal.
How do you exemplify empathy that conveys trust? Volunteering is one way to make a difference. Email me to learn of opportunities that we’ll design together to meet your wants and needs. One idea for nclusivity? Do local restaurants, casinos, and public places offer Unisex bathrooms or are they willing to accommodate you as you guide your loved one to the restroom amid staring eyes (I almost said “ridiculing” eyes) as a male takes a female into the “wrong” bathroom? You can be the catalyst for change.
All of this can be done alone, but think about the power and productivity of a strong alliance, an enthusiastic partnership. It’s harder to say “No’ when a hundred voices plead “Yes, please.”
