February 8, 2021 BARRON’S 25
FROM THE FRONT LINES:
A LEADING SPECIALIST
TALKS ABOUT THE FIGHT
AGAINST ALZHEIMER’S
T
op on the list of fears among older Americans: Alz-
heimer’s, a disease that is often misunderstood and
underdiagnosed. Dr. Jason Karlawish, co-director
of the Penn Memory Center, has spent decades
researching the disease and treating those with it,
giving him a front-row view of the challenges that face
the estimated six million Americans living with Alzhei-
mer’s, as well as millions more of their caregivers.
Karlawish, a professor of medicine, medical ethics,
and health policy and neurology at the University of
Pennsylvania, has tapped his experience to take some
of the mystery out of the disease in his new book,The
Problem of Alzheimer’s,out later this month.Barron’s
talked with Karlawish about where the U.S. took wrong
turns, reasons for optimism, and the changes needed
as the number of Americans living with Alzheimer’s is
expected to more than double to 13.8 million by 2050.
Here is an edited version of our conversation:
Barron’s:You have said Alzheimer’s should be
viewed as a humanitarian crisis. Please explain.
Jason Karlawish: Like all humanitarian problems,
multiple disciplines need to be brought to bear. One
of those is medicine, but we are not going to drug
our way out of this. Failure to see [Alzheimer’s] as
a complicated problem that needs better diagnosis
and treatment—but also care, not just in the medical
world—is why this will remain a crisis.
What is a major problem in the way the U.S.
approaches Alzheimer’s?
We have failed to fully recognize our need for long-term
care services and supports. Alzheimer’s isn’t just a cog-
nitive problem. It’s a disability that requires someone
else to step in. The caregiver is the accommodation. It’s
not until later in the disease that it’s those things we rou-
tinely associate with caregiving. For the first two-thirds
of the disease, it is about planning a day, staying social
and engaged, the ability to pay bills, manage finances,
and travel from one place to another.
We haven’t seen an Alzheimer’s drug approved in
18 years. Is anything changing on this front?
The National Alzheimer’s Project Act [in 2011] autho-
rized the necessary funding for research. So the money
is there, and there’s recognition of the disease as a dis-
ease, and you are starting to see a pickup in the result
of those investments [in drug development].
We have made spectacular progress in understanding
the biology of the disease, and also uncovered that it is a
very complicated and complex disease. We are begin-
ning to carve out identifiable and potentially druggable
targets, such that we should view this disease as we view
cancer or heart disease. And the progress in biomarkers
has been inspiring in its ability to detect diseases.
What should those who get an Alzheimer’s diagno-
sis expect?
In an otherwise healthy adult who I diagnose with mild-
stage dementia caused by Alzheimer’s disease, on aver-
age, they have 10 years of progressive cognitive decline.
How can we get a better handle on Alzheimer’s?
We need to listen to a story unfolding for the past four
decades: While there have been no proven treatments
to attack the pathology of the disease, we have seen a
decline in the risk of developing dementia.
That’s encouraging. What’s causing the decline?
Access and opportunity. If you at least get people be-
yond a high school education, give them access to
health care and to exercise, which helps maintain brain
health, you create healthier brains. The theory is they
are better able to withstand the pathologies that come
with aging. There are things we can do right now.
What should top the Biden administration’s
priority list to better prepare for Alzheimer’s?
We need to recognize that we all face the risk of becom-
ing a caregiver and look for how to provide some insur-
ance against that risk. A lot of solutions right now tin-
ker with the tax bill, like offering a tax credit. Other
democracies, like Japan and Germany, have instead said
let’s do a payroll tax to assure a common fund to pro-
vide some support for long-term care services for the
neither rich or poor but the vast middle class.
What else?
The pandemic revealed the challenge of providing care
where there is no adequate system, and it showed how
tenuous our system of institutional long-term care sup-
ports, like nursing homes and assisted living, is. Covid
showed we need to invest in institutional long-term care.
What concerns you about the current discussions
around Alzheimer’s?
We are going to enter into a very difficult conversation as
a society about when we are dying of this disease—and
how. The current way we talk about it suggests we need
to be more mature and thoughtful, rather than saying,
“The moment I can’t drive or feed myself, X happens.”
A child born with Down syndrome was often either
institutionalized or allowed to die of complications [in
the past]. Life span was 12 years. A lot changed, not
just in medicine but also in how we cared for [people
with Down syndrome] and deinstitutionalized them.
The struggle to create a self [for someone with
Alzheimer’s] has to respect that life changes.
Thanks, Jason. —R.K.
Photograph byMICHELLE GUSTAFSONDr. Jason Karlawish,
co-director of the
Penn Memory Center