We are all affected by Alzheimer’s disease—even if the condition isn’t stealing a loved one from us in slow motion. We’re affected financially (Alzheimer’s disease costs society billions of dollars each year), socially (most of us know someone struggling to help a sufferer) and emotionally (who isn’t frightened by the thought that one day this dreaded disease could be our fate?).
So we all owe a debt of gratitude to SharecareNow’s Top 10 Online Influencers in Alzheimer’s Disease. Every day, these caregivers, activists and educators lighten the burden with tips on how to make care more effective and ideas for society-wide change to make the experience of caregiving a less isolating one.
In honor of Alzheimer’s Disease Awareness Month, we bring you five of their most important lessons learned.
1. Caregivers: Tap into your optimism
Leeza Gibbons, #2 Online Influencer, has a mantra that helped her get through her days as a caregiver for her mother, who had Alzheimer’s disease: Breathe, believe, receive. Or as she puts it, BBR. “Just like CPR, I think BBR can save your life,” says the TV personality and creator of Leeza’s Place, a non-profit system of support centers offering free services. Take ten purposeful breaths to slow your heart rate and soothe your physiology, she counsels. Believe you can get through—“this is the time to believe in your higher power or your higher self, or to engage your optimism.” Finally: Receive. Ask for and accept help, she says. “This is not a path you should walk alone.”
2. Ignoring symptoms doesn’t pay
People who notice memory loss often resist seeing a doctor, says #8 Online Influencer Bob DeMarco, a caregiver and founder of the Alzheimer’s Reading Room. But getting a diagnosis is the first step in getting help. For one thing, a number of treatable conditions can cause memory problems, says DeMarco, who once “cured” a neighbor of Alzheimer’s disease by getting the man’s doctor a note asking that he be tested for thyroid and vitamin B12 problems. “After a few B12 shots, his dementia-like symptoms disappeared,” says DeMarco.
3. Rethink what constitutes “okay”
The job of an Alzheimer’s caregiver is frequently made harder by the confusion or resistance of the person being helped. Three small questions make a big difference, says caregiver and #1 Online Influencer Lori La Bey, founder of Alzheimer’s Speaks: Are they safe? Are they happy? Are they pain-free? “We shift our mindset by asking these questions,” says La Bey. “If a person with memory loss asks us the same question 45 times in ten minutes, it’s irrelevant—because they are safe, happy and pain-free.”
4. Employers: Stay loose
With the aging of the baby boom we’re facing a tsunami of need, says #4 Online Influencer Sherri Snelling, founder of The Caregiving Club and author of the forthcoming A Cast of Caregivers. That means a heavier burden for sandwich generation workers trying to balance the needs of children, older parents and job. Out of self-interest, employers need to get more flexible about flextime and other caregiver-friendly policies. “As our society embraced ‘going green,’ we need everyone to think about ‘going gray,’” says Snelling.
5. Let sibling squabbles go
It’s the question Lori La Bey hears most often: How do I make my siblings change? “So many people feel that their siblings aren’t helping enough,” says La Bey. “If there’s one thing I’ve learned from my 30-year journey with my mother and her dementia, it’s that the only thing I control is myself. What a gift that’s been.” Trying to change other people is worse than useless—it’s an energy drain, says La Bey. “Let it go, and lead by example. Just make sure you’re not hindering others by appearing to be perfect!”
