Each year, researchers and caregivers across the globe pour precious time and energy into improving the lives of older adults living with Alzheimer’s disease — and though potential progress toward a cure commands a lot of attention, the role of caregivers and care programs deserves to be a larger part of the discussion.
That was among the takeaways from the “Disrupting Alzheimer’s” event in Chicago on Sept. 12, organized by The Atlantic magazine. The event included insights from leaders, stakeholders, researchers and advocates, including executives with Brookdale Senior Living (NYSE: BKD), the Alzheimer’s Association and a bevy of organizations devoted to solving or mitigating the effects of the memory disease.
On the top of everyone’s mind was just how prevalent the disease is, and how much worse it’s projected to get if left unchecked. An estimated 5.7 million Americans currently live with Alzheimer’s, the vast majority of which are age 65 or older, according to the Alzheimer’s Association. By 2050, the annual number of new cases of Alzheimer’s and other forms of dementia is projected to double.
Today, more than 16 million people currently act as unpaid or family caregivers for the U.S. Alzheimer’s population. Last year, that group provided an estimated 18.4 billion hours of unpaid assistance, an effort valued at $232.1 billion.
And yet, there simply aren’t enough caregivers to adequately look after all of the people living with memory diseases in the U.S., according to Sarita Gupta, co-executive director of Jobs With Justice and co-director of Caring Across Generations.
“The work is so undervalued. It’s very invisible,” Gupta said. “There is a growing home-based workforce that actually needs to be valued in our society with actual training and career pathways.”
Also among the hot topics: progress toward a cure.
While there are currently no treatments that prevent or cure Alzheimer’s disease, there are ongoing efforts to slow or even halt the disease — some of which seem promising, according to Johan Luthman, vice president and head clinical development of the Neurology Business Group at Japanese pharmaceutical company Eisai.
“We have very encouraging clinical trial data now,” Luthman said during a panel discussion regarding detecting the disease early or curing it. “We actually see effects of drugs that we haven’t seen before.”
Care and cure equally important
For all of the day’s optimism surrounding solving Alzheimer’s once and for all, there wasn’t as much discussion centered on caring for the population of older adults living with the disease — at least not until Juliet Holt Klinger, head of dementia care and programs for Brentwood, Tennessee-based Brookdale Senior Living, took the stage.
“Programming and care is the treatment for the symptoms. That doesn’t get talked about a lot,” said Klinger, who helps oversee the senior living operator’s approximately 520 memory care communities. “We’re always looking for a cure, but I think the program is the pill.”
What Klinger meant is that, even if researchers discover a miracle cure for preventing Alzheimer’s today, there will still likely be millions of older Americans who need memory care for the rest of their lives.
“There’s no reason why we can’t have both conversations at once,” Klinger told Senior Housing News after the event. “We can quest for the cure, but also quest for the best care and quality of life possible for people currently living with the disease.”
At Brookdale, person-centered care is a big part of the equation. For example, the company is working on a pilot with a digital platform for storytelling called MemoryWell, which helps families relay their loved ones’ life stories to their caregivers.
“The future of care may not be what we know senior living to be today,” Klinger said. “The future is going to require a tremendous amount of creativity and flexibility in our current model of care to reach more people, to become more affordable and more accessible.”
Simply talking about Alzheimer’s or other forms of dementia during a large-scale, industry-spanning event helps elevate the discussion, she added.
This wasn’t the first such event, either. Earlier this year, Klinger helped represent Brookdale in the first-ever Dementia Care Provider Roundtable, convened in Chicago by the Alzheimer’s Association. The event drew representatives from 16 different providers, including Brookdale and McLean, Virginia-based Sunrise Senior Living.
“There could be, and should be, intellectual collaboration through different levels of providers to come up with the solutions,” Klinger explained. “And the solutions won’t be one thing. It’s going to be a suite of options for people of various means, of various cultural beliefs, and of people who want to provide care in different ways.”
Written by Tim Regan