An Alzheimer's Disease Research Center
New research shows a unique strain on a generation of Americans caring for both adult parents and children in their home as they start their prime earning years.
The report comes from the National Alliance for Caregiving (NAC) in partnership with Caring Across Generations, dubbing the group of 11 million Americans “the “sandwich” generation of caregivers for their responsibilities juggling work, parenting, and caregiving, adding often unsupported financial and emotional strain.
Editor’s Note: The following is an excerpt from a column authored by Penn Memory Center Co-Director Jason Karlawish for statnews.com.
In histories written about Alzheimer’s disease, 2019 will turn up as a landmark year, one in which researchers, clinicians, patients, and their families were whipsawed from crushing despair to giddy optimism.
The year unfolded with a string of disappointments. One of the biggest came on March 21 when Boston-based Biogen announced it had pulled the plug on two clinical trials of aducanumab, a promising treatment for individuals with Alzheimer’s disease. The drug had failed a “futility analysis,” meaning it would not be able to achieve its objectives. More bad news came in the weeks and months to follow. An entire class of drugs called BACE inhibitors (pronounced “base” as in baseball) had failed.
By the annual international meeting of Alzheimer’s investigators in Los Angeles in July, a pervasive disappointment was enmeshed with embarrassment, heightened by the meeting’s timing on the 50th anniversary of the successful Apollo mission to the moon. A half a century ago, we were able to send someone to the moon, have him walk about, and return home but, despite all our time and effort and money since then, despite all the advances in genomics, proteomics, and other “omics,” despite precision medicine, we haven’t been able to make a dent in this disease.
Five months later, at the Clinical Trials in Alzheimer’s Disease (CtAD) conference on Thursday, December 5, I and other Alzheimer’s researchers gathered once again in California. This time the mood was giddy. The crowd in the Indigo ballroom at the San Diego Bayfront Hilton behaved more like a gathering at an awards ceremony than an early morning session at a scientific meeting. There were hugs, laughter, and backslaps.
Why the change? Biogen had somehow flipped the switch on aducanumab. According to its reanalysis of the clinical trial data, aducanumab wasn’t a flop but a success, and the company had decided to ask the FDA to approve aducanumab for the treatment of Alzheimer’s disease.
Early in 2020, Biogen will re-open study of aducanumab, a drug that targets brain amyloid, for the treatment of Alzheimer’s disease.
On December 5, at the Clinical Trial in Alzheimer’s Disease (CTAD) meeting in San Diego, California, Biogen scientists discussed the data supporting their reversal of March 2019 announcement to end study of aducanumab. The decision was driven by results from late-study changes in dosing in the ENGAGE and EMERGE studies (see reporting from STAT).
Penn Memory Center (PMC) Executive Director Felicia Greenfield appeared on NBC10 recently for an interview with PMC patient and former Temple University professor Jeff Draine.
The two discussed his early-onset Alzheimer’s disease and the importance of positivity after receiving a diagnosis.
“Improving a person’s quality of life is the best thing we can do right now, not only for the person with the diagnosis but also for their family members,” Greenfield said.
All adults, regardless of cognitive status, should be a brain-healthy diet (“the more colors on your plate, the better,” Greenfield said) and should seek an evaluation if memory problems go beyond ordinary.
Bill Lyon, the romantic, finally found his sunset.
It was the fall of 2017 when I went out to visit Bill at his home, not as “the man in the white coat,” as I’d been dubbed in his columns, but as an interviewer looking to understand what made him so fearless.
Fearless, not just to accept the Alzheimer’s diagnosis I had given him four years earlier, but to shout it out from the tallest tower he could scale.
Fearless, not just to live with the loss of his cognitive abilities, but to put them on display to a world that had so treasured his mind for decades.
Fearless, to celebrate the circle of life and acknowledge his place in it.
“You pass along the baton, and you hope you’re leaving behind you somebody who can pick up and follow,” he told me that day.
A contest from the National Institute on Aging (NIA) has pushed app creators to focus on ways technology can improve the care and management of Alzheimer’s patients.
The Eureka Prize from the NIA awarded three teams on their efforts to create new apps and software designed to improve dementia care and care coordination. The contest, launched in 2018 to drive innovation in the dementia care space, fielded 33 applicants with submissions ranging from mobile apps to software platforms to pick the three winners to share $400,000 in prize money.
Ken Ford, 93, travels an hour from his home to the Perelman Center for Advanced Medicine. He meets annually with his ABC coordinators and clinicians, saying “yes” to MRIs, PET scans and lumbar punctures. He has done this for 13 years, showing up for his appointments and and rescheduling when conflicts arise. Why? Ford is motivated, not by a family history of dementia, but a pure love for science.
“Anything I can do that will contribute to research, I’m happy to do, as long as it’s not too intrusive or too time consuming for me,” Ford said. “I just do my duty. Anything for science.”
Credit: reneechenaultfattah.com
A new documentary from Renee Chenault-Fattah exploring the struggles of families affected by Alzheimer’s disease will have its television premiere 7 p.m. Nov. 30 on NBC10.
Chenault-Fattah, a former anchor for NBC10, told Philadelphia Magazine she began to see her friends either become caregivers or start to experience cognitive issues themselves shortly after turning 60. Then she came across an article detailing the disproportionate toll the disease takes on the African American and Hispanic communities. African-Americans are twice as likely as white people to develop Alzheimer’s disease or other dementias, while Hispanics are 1.5 times as likely.
“That spoke to me and said this is the story you need to do,” she said in the interview.
Chronic systemic inflammation has been associated with both age-related cognitive decline and depression, leading researchers to study it further.
Jordan Weiss, a PhD candidate in demography and Healthy Brain Scholar at the University of Pennsylvania, co-authored two studies with collaborators from the National Institute on Aging that examined associations between systemic inflammation, Alzheimer’s disease (AD), and depression. One study examined cytokines and their relation to cognitive health, and the other study examined the association between systemic inflammation and depression.
Medicare’s open-enrollment period for 2020 is already a month underway and many older Americans are weighing plans ahead of the December 7 deadline. But outside of normal year-to-year increases in out-of-pocket costs and premiums is a staggering difference for Medicare beneficiaries with dementia.
Last April, Health Services Research published a study that used 20 years of Medicare expenditures to estimate that Medicare spends nearly $16,000 more on patients with dementia than other Medicare beneficiaries.