RANCHO SANTA FE — Since September, the RSF Library Guild has held a monthly series focusing on the health and caregiver issues surrounding Alzheimer’s.
The free gatherings have afforded people the opportunity to learn more about the disease, the advances being made, and the support present for both patients and caregivers.
The San Diego and Imperial chapter of the Alzheimer’s Association has partnered with the RSF Library Guild to help raise awareness of this disease.
In San Diego County alone, nearly 60,000 individuals are afflicted with dementia and the leading disease under this umbrella diagnosis is Alzheimer’s.
The guest speaker for the afternoon meeting was Michael Rafii, MD, Ph.D. A neurologist at UCSD, his hope was to present an informal dialogue, answering a variety of questions from the audience.
First, Rafii shared a bit about himself.
“I see patients who have memory complaints, memory concerns, and our job is to figure out whether these memory concerns are just age-related changes, an illness or a disease, a medication side-effect, or something else that we really need to address and potentially treat,” Rafii said. “Unfortunately, we find that memory problems which are due to Alzheimer’s disease is a progressive disease that gets worse over time and really leads to an inability for an individual to take care of themselves.”
Alzheimer’s is an epidemic. Every 67 seconds another person is plagued by it.
While Rafii discussed how Alzhiemer’s impacts patients and families, talked about new research, therapies, and diagnostics, he voiced something else.
“Unfortunately people with Alzheimer’s disease don’t have advocates and you could become advocates,” he said, looking at the attendees. Rafii continued, “A person with Alzheimer’s disease has no voice.”
Rafii wanted people to know that a person with Alzheimer’s disease may not even think they have a problem and sometimes family members are in denial, as well.
This disease needs a champion to “voice” how big of a problem it really is.
According to Rafii, in 2010 the number one expense to the U.S. economy published by the Rand Corporation was dementia at $203 billion. Following after was heart disease at $109 billion, then by cancer at $71 billion.
“If you take number two and number three which affects so many more millions of people, it does not add up to the same expenses for Alzheimer’s disease. I don’t mean to only talk about the finances,” he said. “Certainly, there’s a huge societal and emotional cost to this disease. But just looking at numbers, it’s the most expensive disease to our society.”
Rafii explained the skyrocketing price tags have nothing to do with cutting-edge cardiac defibrillators, cardiac intensive care units, early cancer screenings and advanced cancer treatments.
The cost goes directly to caregivers. The tiring work of a caregiver does not enable them to have a “voice,” either.
“So it’s a very unique situation because this disease has no voice,” Rafii said.
Next, Rafii addressed the budgets.
He wanted people to know that the budget for all Alzheimer’s disease research in this country was $500 million per year. At first, someone might think that’s a generous amount.
But the bigger picture states otherwise.
The annual budget for cancer, he said, is $5 billion per year.
That type of financial cushion allows for extraordinary research and testing which invariably further helps patients and families.
“What we need is a champion, and there are folks out there that are trying to corral resources, but unfortunately it’s not enough. And many ideas go untested because there’s no funding and are just put aside,” Rafii said.
Following Rafii’s presentation, Lynn Mullowney, associate director for the Alzheimer’s Association in the western region shared a few words.
The advances in Alzheimer’s research have slowed down due to a lack of volunteers for research. She also told the crowd that the Alzheimer’s Association is actually one of the largest private funders of Alzheimer’s research.
“As Dr. Rafii pointed out, it’s pennies on the dollar, and all we really need to do is look at cancer and heart disease to see that this investment pays off,” she said, referring to funding and volunteering for clinical trials. “So we need to make that investment in Alzheimer’s.”
To learn more visit alz.org/sandiego
