Hope and controversy

Chattanooga Alzheimer’s community reacts to new drug; doctor tempers expectations

“There’s so much suffering out there that a lot of caregivers wanted something, some hope.” – DR. BERNEET KAUR, ERLANGER NEUROSCIENCE INSTITUTE

Alzheimer’s disease is more than just a professional concern for Dr. Berneet Kaur. As a fellowship-trained behavioral neurologist, managing Alzheimer’s disease and other forms of dementia is a large part of Kaur’s practice at the Erlanger Neuroscience Institute, where she is the head of memory and aging services.

But the effects of the disease are also “deeply personal,” she said. Kaur recently lost her father to dementia, and his father died from the disease several years earlier.

Her family connection is just another reason why Kaur has closely followed the news surrounding aducanumab, also known by the brand name Aduhelm — which ignited both celebration and controversy last week after becoming the first Alzheimer’s drug to achieve approval from the U.S. Food and Drug Administration in nearly 20 years.

“My father would not have benefited from this drug with his dementia, but I know what it’s like to witness somebody dying of brain failure from dementia, and it’s heartbreaking,” Kaur said. “There’s so much suffering out there that a lot of caregivers wanted something, some hope.”

But Kaur is making sure hope comes with tempered expectations for her patients.

That’s because there’s little to no evidence the drug is effective in stopping the debilitating brain disease, and many other barriers — including aducanumab’s $56,000-a-year price tag and questions over whether insurance companies would cover it — that could limit access.

Officials from BlueCross BlueShield of Tennessee, the state’s largest health insurer, said via email it is studying the drug’s efficacy and determining future policies for coverage.

Kaur also wants people to know the drug is only for those with diagnosed Alzheimer’s, which is a specific type of dementia, and not other forms of dementia and memory loss.

“If you don’t have amyloid plaques and tau tangles, then you don’t have Alzheimer’s disease, and that’s important for people to know with this particular drug.” – DR. BERNEET KAUR, ERLANGER NEUROSCIENCE INSTITUTE

Alzheimer’s is distinct from other forms of dementia, an umbrella term used to describe a range of conditions resulting in a loss of cognitive function that impairs one’s daily life, such as memory loss, inability to control behaviors or poor judgment.

The hallmarks of Alzheimer’s are abnormal or dead brain tissue called amyloid plaques and tau tangles.

“If you don’t have amyloid plaques and tau tangles, then you don’t have Alzheimer’s disease, and that’s important for people to know with this particular drug,” Kaur said. “It’s very specifically targeted to use the body’s immune system to clear the amyloid from the brain, and the hope is that by doing that, we stabilize the brain so that the disease doesn’t progress.”

Of the two studies conducted on aducanumab, one showed patients didn’t improve while the other showed some slight improvement.

“Both studies did show that the amyloid plaques were cleared from the brain pretty effectively,” Kaur said. “But whether or not that actually improves somebody [with Alzheimer’s] — their memory loss and their ability to function independently — that’s yet to be seen.”

The drug also has some significant side effects, including an increased risk of brain swelling and hemorrhage.

“What I’m hopeful for is down the line by clearing those amyloid plaques from the brain, that they don’t get worse — that they’re less likely to end up in a nursing home, but they’re more likely to be able to stay at home, live longer and have more time with their families — that it slows or stops the progression of the disease,” she said. “But the honest truth is that we don’t know yet. We don’t have enough data to tell us that.”

Still, advocates such as Amy French, senior manager of programs and education at the Alzheimer’s Association Tennessee Chapter, say aducanumab’s approval is a major victory for the Alzheimer’s community despite its shortcomings.

“The thing that is absolutely the most exciting about this medication now being approved and now being made available is the buzz that it is creating in regard to research,” French said. “History shows that when a new drug, a new treatment is approved for any illness, that invigorates the field. It leads to accelerated research. It leads to more aggressive pursuit of effective treatments.”

There’s currently no cure for Alzheimer’s

— a disease with devastating ripple effects stretching far beyond those who are immediately affected — and few drug companies have been willing to risk investing in new treatments when so many prior attempts have failed.

It’s estimated that more than 6 million Americans are living with Alzheimer’s disease, according to the Alzheimer’s Association. In Tennessee, there are about 120,000 adults 65 and older living with the disease, and that number is expected to grow to 140,000 by 2025 as the population continues to age.

The association estimates that in 2020 there were around 357,000 caregivers in Tennessee providing 483 million hours of unpaid care. About 30% of those caregivers experience depression, according to a 2021 report from the Alzheimer’s Association Tennessee Chapter.

“For every one person who’s affected with Alzheimer’s, there’s a plethora of caregivers who are also affected directly and indirectly, so it is a huge burden,” French said. “And most of the care that is provided for people who have Alzheimer’s is provided by unpaid caregivers — family members, people in their village, in their circle — who often and usually sacrifice pretty much everything to be sure that person is cared for.”

French said it’s those caregivers who finally see some glimmer of muchneeded hope.

“Every single caregiver not only is consumed with concern for their loved one they are caring for, they are consumed with concern for future generations — for their children and for their grandchildren. We know that in many kinds of dementia, there are genetic links,” she said. “We know there’s much research to be done on that topic. But for caregivers, knowing that their children and their children’s children can have hope of managing this disease is huge.”

Patients, families and caregivers can access free Alzheimer’s and dementia support by calling the Alzheimer’s Association at 800-272-3900 or online at alz.org/tn, French said.