Story reposted with permission from The Times-Standard.
This column feels more personal than most because my father, who just turned 90, suffers from dementia. While he hasn’t been specifically diagnosed, we’re pretty sure it’s Alzheimer’s. I’m the child who lives too far away to be actively helpful, so I try to be supportive from afar while my mom, also pushing 90, and my sister serve as dad’s caregivers. He remains himself in many ways, but sans most of his memories and with a world that grows ever smaller.
For years, Alzheimer’s was something of a medical backwater. In the late 90’s, scientists developed a few drugs that tended to calm the symptoms. It wasn’t until 2021 that new drugs were designed to treat the underlying causes of the disease. They are not a cure, though they can slow the progress of the disease. Medicare did not cover them at that time. This is slowly changing due to strong advocacy by the Alzheimer’s Association, its many volunteers and the general public seeking similar coverage and research like those funded for cancer and heart disease.
Recently, new blood tests have been approved by the FDA, but Medicare coverage continues to lag. A bipartisan bill to change language that will allow Medicare to cover these tests is making its way through Congress. It has the acronym ASAP — Alzheimer’s Screening and Prevention Act — and the bill numbers of SB 3267/HR 6130 in case you want to contact your congressman and senator to push for their support.
“It’s our mammogram moment,” says Lynn McKenna, who helps organize Humboldt’s yearly Walk To End Alzheimer’s. She’s referring to women winning funding for mammograms, so that detection and treatment of breast cancer can begin earlier. As with that disease, early detection of Alzheimer’s proves to be exceptionally important.
New drugs that slow down the progress are available, but are only effective in the early stages of this disease. They are not a cure but can give people additional years with a decent quality of life.
“I compare Alzheimer’s to AIDS,” McKenna says. “There are still people who don’t want to admit they or a family member has it.”
It’s helpful that people like Bruce Willis, Ronald Reagan and Glen Campbell have been publicly known to have the disease. Over time, the stigma of Alzheimer’s has declined, though it hasn’t disappeared completely.
Currently, to delay or deal with Alzheimer’s, nothing matters more than a healthy lifestyle: choices we make about things such as diet, exercise, smoking and protecting our noggins.
“Healthy things for your heart will improve your brain,” Lynn says.
The Walk raises money, of course. All funds raised further the care, support and research efforts of the Alzheimer’s Association. The great majority of those dollars goes to Alzheimer’s care, support, education, advocacy and research — about 1,100 projects in 59 countries. Locally, funds support the 24/7 toll-free hotline, respite care and a variety of informational brochures in English and Spanish.
People with dementia and their caregivers attend the walk and are often overwhelmed by the number of people who come out to support them. Anyone can attend the opening ceremony; you don’t have to walk. (It is required for you to register if you want to walk. There’s no fee to register, and you’re not required to raise money, although of course that’s encouraged.)
Lynn adds that the group seeks community members to serve on the walk committee and on-the-ground volunteers to help with set up and event logistics on the day of the walk as well as the day before.
This year’s Walk to End Alzheimer’s is Saturday, Oct. 10, at the Adorni Center in Eureka. Check-in is at 9 a.m.; the opening ceremony starts at 10:30, and the walk itself begins at 11 a.m. There are two routes, a shorter one along the Bay Trail, and a longer one to the Old Town Gazebo and back.
Lynn stresses that “it’s really an upbeat, event” with vendors, activities and commemoration stations for people to leave pictures of their loved ones. You can find what you need to know here: https://tinyurl.com/2nsfwwx7.
All of this serves a simple and compelling vision, a world without Alzheimer’s and other dementias. Come out and participate in some way. My dad and I and many others would so appreciate it.
Consultant Michael Kraft writes the Good Work series, volunteering on behalf of the Northern California Association of Nonprofits (NorCAN). NorCAN, another DreamMaker project, supports connections between people and organizations that work every day to keep our communities strong by offering professional development, board support, networking connections and more. Learn more at https://norcal-nonprofits.org/. To nominate a deserving nonprofit organization to be profiled, email michael@kraftconsultants.com.