Lila Bear recently quit her full-time job to care for her paternal grandparents, who both suffer from Alzheimer’s disease. The dual diagnoses had crushed her family; it marked the third time they had been forced to confront the debilitating illness in just a few short years.
It had first affected Lila Bear’s maternal grandmother. On good days, the septuagenarian would be forgetful, a little spacey perhaps, but still emotionally and mentally present. On bad days, she would forget the death of her own child.
"When we told her she died, it was like my grandmother was hearing it for the first time," Bear, who lives in El Cerrito, said. "She would have to relive her daughter’s death over and over."
The thought of a similar fate befalling her other grandparents pushed Bear toward activism. Soon after, the 30-year-old joined the ranks of millions across the country who are pushing the government for increased funding for Alzheimer’s research. And on Saturday morning, she was one of several thousand people who marched in Walnut Creek to raise awareness as part of the Walk to End Alzheimer’s, a charity event that brought in more than $500,000.
"When people ask me what I want for my birthday, I ask them to walk with me or help sponsor my walk," Bear said.
Alzheimer’s Association, a nonprofit created in 1980, organized the Walnut Creek event and its 600 satellite walks. Dawn Jones, a volunteer with the planning committee, said it takes about 10 months to iron out all the details.
"It’s a big deal," Jones said. "We plan for it all year, but of course it all gets busier toward the end. Our goal is to raise money to help find a cure for treatments, and to help fund support groups for those who have the disease and for their families."
The Walnut Creek iteration kicked off at Heather Farms Park at 8 a.m with about 2,400 attendees. Despite the seriousness of the disease they were rallying against, the mood was jubilant. For many, the walk not only raises money for a good cause but also offers attendees a chance to commiserate with people who are familiar with the plight of Alzheimer’s.
"It’s sometimes shown in T.V. and movies as being sort of a running joke, like, ‘oh, the grandpa is forgetful and gets names wrong, and can’t remember where he is," said Sarah Johannson, whose mother suffers from Alzheimer’s."I’ve had to explain to really close friends and family that it’s actually the least funny thing you can imagine. It’s not a punchline."
Marchers waved color-coded plastic flowers to identify themselves: orange for supporters, yellow for caretakers, blue for sufferers, and purple to represent having lost a loved one to the disease.
The purple flowers appeared to outnumber all others. On average, one in three seniors dies with Alzheimer’s or some form of dementia. The Center for Disease Control reported in 2016 a 55 percent increase in Alzheimer’s-related deaths over the last 15 years.
"Millions of Americans and their family members are profoundly affected by Alzheimer's disease," CDC Acting Director Dr. Anne Schuchat said in a statement. "As the number of older Americans with Alzheimer's disease rises, more family members are taking on the emotionally and physically challenging role of caregiver than ever before."
Despite the rise, funding for Alzheimer's research pales in comparison to other serious, potentially fatal illnesses. As of 2016, federal funding for Alzheimer's and other dementias hovered around $412 million. Funding for AIDS and HIV research came in at about $2.9 billion, while cancer research totaled $5.5 billion, according to funding data from the National Institute of Health.
In addition to severe memory loss, people suffering from Alzheimer’s are prone to bouts of anxiety, depression, mood swings and hallucinations. About 35 percent of caregivers report that their health has also taken a hit since assuming caretaking responsibilities.
"More and more people are getting it, and there are so many people affected by it," said Paulette Hunt, whose husband suffers from the disease and lives in a care facility. "It’s really, really hard…. Alzheimer’s steals your personality."
According to the National Institute of Health, more than five million people are living with Alzheimer’s currently, a number that could reach as high as 16 million by 2050. The illness is also extremely expensive to treat and there is no cure; this year, Alzheimer’s and other dementias will cost the country an estimated $259 billion.
Families that can afford full-time care, like Hunt, often spend tens of thousands per year to cover the cost of treatment facilities. Others rely on government-subsidized healthcare, which may not cover the best treatment plans.
Bear, who will return to the walk next year, hopes for a future in which affluence doesn’t determine the quality of life for sufferers and their families.
"I will walk every single year until we have a cure and better treatment," Bear said. "I’ve made that promise to myself."
Find out more information about Alzheimer’s disease here.