The Alzheimer's Association California Southland Chapter is part of a larger, national organization headquartered in Chicago. The association is “the leading voluntary health organization in Alzheimer’s care, research, and support,” according to its website. It was founded in 1980 and is a vital resource for individuals and family caregivers.
More than 55 million people live with dementia worldwide. Over seven million older Americans have Alzheimer’s, and more than 11 million people provide unpaid care to patients. “The association addresses this crisis by providing education and support to the millions who face dementia every day, while advancing critical research toward methods of treatment, prevention, and, ultimately, a cure,” the website noted.
The association acknowledges and addresses the impact on caregivers and the community at large. The day-to-day support for families keeps Janie Bark, development manager of the California Southland Chapter, in high gear.
The tagline for the association is “Fighting for a Different Future.” The global toll of people diagnosed with dementia is staggering, and the United States struggles to cope with it. Many people know a loved one or someone in our orbit who was diagnosed with this devastating disease, and the ripple effects for a family and community can be overwhelming. As Baby Boomers age and people live longer, Alzheimer's kills more people than breast cancer and prostate cancer combined. Alzheimer's and dementia will cost the U.S. $360 billion in 2024, and these costs could rise to $1 trillion by 2050.
Bark – whose mother struggled with a dementia diagnosis – found a telephone number that was helpful to her family when her mom’s health declined. So, Bark was moved to work with the Alzheimer's Association. She found that the services, resources, and understanding the association offered were lifesavers. She wished to spare others some of the challenges she and her family had to navigate. Her family’s story illustrates a version of what many caregivers deal with.
“My mother was living alone in our childhood home, and as a good Midwestern gal – and to satisfy a sweet tooth – drove to the store to get her butter brickle ice cream,” Bark says. “She returned home with no car and we did not know who gave her a ride home. My siblings and I realized we needed to address this recent memory loss immediately, and I searched for resources. I discovered the 800 number for [the] Alzheimer’s Association, which operates 24/7 in 350 languages and has master-level clinicians available, all at no cost.
“My initial question was to inquire how to take my mother’s car away from her with dignity, assuming we would find her car. They then asked me other questions about her behavior and offered many useful suggestions, [including] … helpful tips on communication and resources [that are] available. They even sent a follow-up email with all the points … which we discussed. I am eternally grateful for the organization for following along the journey with my own mother for six years, and it is my honor to help others navigate their own unique journey.”
As a postscript, Bark says a street-sweeping ticket was the key to locating her mother's car. It was parked behind a fire station in a neighboring town, with half a gallon of butter brickle ice cream on the passenger seat. Her mom died 11 years ago at age 92. Bark says it was “a long goodbye.”
With non-profit, education, and volunteer experience – and armed with her own personal insights – Bark was perfectly poised to lead the charge. The California Southland Chapter offices are located in Palm Desert. The association offers, among many resources, peer-to-peer support, music and art classes, and field trips, and it seeks to create concern and awareness for the prevention and treatment of Alzheimer’s.
The lifetime risk for developing Alzheimer's at age 45 is one in five for women and one in 10 for men. Older Black Americans are approximately twice as likely to have Alzheimer's than their white counterparts, and older Latinx people are approximately one-and-a-half times as likely to have it. There are new drugs on the horizon, but there is no cure for the disease. Blood tests can be done to find out early if there is concern about cognitive decline in someone. It’s important to get a cognitive test from a neurologist to confirm a diagnosis, but signs include – of course – memory issues, wandering, anger and hostility, and more severe symptoms that can be challenging for both patients and caregivers.
Bark says much of the association’s work is twofold. First, it encourages a healthy brain/healthy body lifestyle. Avoiding processed foods is an important component for patients and caregivers; sadly, economic disparities make healthy cooking out of reach for many people. The sleep/exercise/sociability quotient is paramount for patients who are diagnosed with the disease, and ongoing support for caregivers is vital. So, the association also supports caregivers, who often take care of an ailing parent after work, and many struggle to cope. Unsurprisingly, women provide much of the caregiving for relatives suffering from Alzheimer’s and dementia.
“Thirteen percent of caregivers are diagnosed with illnesses themselves because they don’t go to the doctor, they don’t go to the dentist, [and] they can’t even get a haircut, let alone exercise,” Bark says. Isolation, the inability to provide self-care, and the lack of time for a fulfilling hobby or to find life’s joys add to these pressures. Caregivers suffer higher rates of depression and burnout post-pandemic, and the lack of resources in the U.S. for long-term care is at a crisis level.
More than 600 walks across the country are organized to raise funds and awareness of the disease. The 2024 Walk to End Alzheimer's – Coachella Valley occurred on Oct. 26. Hundreds of participants attended the annual event, which took place at the Palm Desert Civic Center Park.
Bark shared a touching story while she preparing for the event. “I answered the phone yesterday and it was a retired dentist who lives in town and wanted to participate in the walk and inquired how many miles the walk path is so he can participate,” she says. “He lost his wife of 71 years to Alzheimer's and said he is absolutely heartbroken. He is 95. These are the people with whom we walk with in the journey for a cure.”
The walk gives a “promise garden flower” to everyone who attends. The color of the flower represents one’s connection to the disease: yellow for caregivers, blue for someone living with Alzheimer's or dementia, orange for those who support the cause, and purple for those who have lost someone. A white flower on stage represents the next generation and a world without Alzheimer’s. Bark says it is stirring to see people in the community get involved, and the local energy fuels the mission.
To find more information about Alzheimer’s and the association’s services, or to donate and get involved, visit https://act.alz.org/.
