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Februar y8,2 021BARRON’S 17
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24 BARRON’SFebruary8,2 021
residentsarelivingwithAlzheimer’s or
someotherformofdementia.Even
thosewhohavebeensafefromthe
virushave suffered;70%ofc aregivers
surveyed by UsAgainstAlzheimer’s
thispastfallreportedadeclineintheir
lovedones’memoryorb ehaviors.Resi-
dentsinl ong-termcarefacilitieshave
beenisolatedfromrelativesandfriends
whosupplementtheircare,provide
extraeyesthatspotchangesinhealth
conditions,andtapintoreservoirsof
memoriestokeepthemengaged,while
unpaidcaregiverslik eRosannehave
beencutofffromsupportservices.
Thepandemichascastaharshlight
ontheinadequac iesoftheU.S. care-
giving systemandtheenormous
emotionalandeconomicburden
on families—andultimatelythe
economy—bringingthefight against
Alzheimer’s toaninflectionpoint.It
comesastheoldestbabyboomersenter
theagerangewhereAlzheimer’s is of-
tendiagnosed,andagainstabackdrop
wheresciencecouldbeonthecuspof
sorelyneededvictories—inc ludingthe
possibilityofthefirstnew drug ap-
provalin18years,andprogressinbio-
markerstoenableearlierdetection.
Alzheimer’s isaprogressive brain
diseasethatist hemos tcommoncause
ofdementia.Ofthetop10causesof
deathgloball y, it’s theonl yonethat
can’t becured,sloweddown,orpre-
vented,at leastnotyet.Thedisease
manifestsindifferentways,withsome
patientsliving20yearsafterdiagnosis,
thoughit’softenclosertofourtoeight
years.A lthough80% ofthosewiththe
diseaseare75 orover, Alzheimer’s typ-
icallyemergesinm idlife,20to30years
beforesymptomslikememorylossor
troubleswithlanguage appear.
Withthe worldint hemidstofan
agingboom,thenumberofpeopleliv-
ingwithAlzheimer’s orsomeformof
dementiaisexpectedtotripleby 2050
to152million—abit morethanthepop-
ulationofRussiatoday. That isbringing
recognitiontothescaleoftheproblem,
withnonprofits,acade mics,businesses,
andgovernmentsinJanuarycreating
aglobalinitiative,DavosAlzheimer’s
Collaborative,aimedat speedingup the
glob alresponsetothedisease,inp art
by usingtheroadmap offeredby the
discoveryofCovid-19vaccines.
“Alzheimer’s is a disease of greater
prevalence and greater lethality than
Covid -19,”says George Vradenburg,
who co-founded theadvocacy and
research groupUsAgainstAl-
zheimer’s. “This is an ongoing pan-
demic. Its cost to America in terms of
direct medical costs is significantly
higher than cancer.”
Cost estimatesvary, but a 2020
paper in AmericanJournal ofMan-
aged Care put the total health-care
cost of the diseaseat $305 billion—
and projectedit would hit $1 trillion
by 2050. With few treatmentsavail-
able, most of the direct costs come
from skilled nursing care, paid home
health care, and hospice.
While some of this is covered by
Medicaid for low-income Americans,
most ofit is not covered by Medicare,
leavingfamilies to foot the bill.The
total lifetime cost of care for someone
with dementia is estimatedat
$357,000 in 2019dollars, according to
the Alzheimer’s Association.The bulk
of those costs are borneby family
caregivers, often in the form of unpaid
caregiving—not to mention the psy-
chological and emotional toll.
ForStephanieMonroe,theuncer-
tainty ,confusion,andfeararoundher
parents’careduringthepastyearha ve
beentheworstexperiencesofherlife.
Monroe,whoretiredfromthefederal
governmentandno wworks onequity
andaccess-relatedissuesat UsAgainst-
Alzheimer’s,hasagonizedover
whethertofindalternative housingfor
herparents.TheBaltimore-arealong-
termcarefacilitytheylive inhad
spottycommunicationsaboutCovid-
outbreaksandprotocols,andthere
weresignsthatherfather,whohas
Alzheimer’s,wasdeterioratingasso-
cialactivitieslikechoirandmah-jongg
weresuspended.Amove,though,
wouldseparateherparentsfromher
aunt wh olivesinthecommunity,as
wellasnearby chu rchfriends.“There’s
nogooddecision,” Monroesays.“It’s
allaboutweighingtheconsequences,
costs,andbenefits—and feelingguilty
aboutan ydecisionyoumake.”
Thecostscanripplethroughgenera-
tions,andnotjustduetolostwagesor
timeoutoftheworkforceforcare-
givers.Studiesshow thatspousalcare-
giverswhoreportstrainfacea63%
highermortalityriskinf ouryearsthan
noncaregiverswhoarethesameage.
Smallerstudiesalsofoundthatsome
caregiversha ve compromisedimmune
systemsandincreasedneedformedi-
cations,andhave seentheirown
health-carecostsincreaseinthe
aggregate by anestimated$9.7 billion.
“The financialcostsareunderesti-
mated.Theemotional,psychological,
andevenph ysicalcostsareunderesti-
mated,”says AmyFlorian,CEOofCor-
genius, whichhelpsfinancialadvisors
navigatetheseissueswiththeirclients.
“Itaffectspeopleineveryrespect.”
A
lzheimer’s was recognized as the
most common cause ofdementia
in 1976. In the 45 years since, prog-
ress in fighting the disease has
been glac ial, in partdue to mispercep-
tions about the disease thatdelayed
funding and scientific research and
created an inadequ ate care system in
its ear ly days.
“As a nation,we struggled to see
the disease as a disease,”says Dr. Ja-
son Karlawish, co-director of thePenn
Memory Center.For decades, cultur-
ally, Alzheimer’s symptoms—memory
loss, confusion, or forgetting to pay
bills—were brushed aside as just the
natural course ofaging, and problems
that could be handledby family, al-
most always wives and daughters,
Karlawish sa ys (see Q&A, page 25).
With limited funding in the first 20
years, researchwas restricted primar-
ily to how a brain with Alzheimer’s
changed, rather than to themultifac-
eted pathways that contribute to the
disease, thefactors that influence a
person’s risk, and devising cutting-
edge clinical trials.Research talent
was lost to diseasesattracting more
investment, says Dr. Maria Carrillo,
chief science officerat the Alzheimer’s
Association.Even today, much of what
is currentlyavailable isshort-term
palliati ve therapies thatdon’t address
the underlying biology of the disease.
Thecomplexityofthebrainaddsto
thechallenge. Becausethereisn’t yeta
solidunderstandingofwhymemory
changes,theclinicaltrialsforAlzhei-
mer’s takelonger ,often18 to
months,becauseresearchersneedto
seeifthedrugsmove memory, rather
thanjustlookat under lyingchangesin
thebiology. Earlytrialswereopento
thosewhohad aclinicalAlzheimer’s
diagnosis.Butnow,trialsinclude peo-
plewithbiomarkerslik etheam yloid
plaquesandtautangles(bothareforms
ofproblematicproteindepositsinthe
brain)thatareno wseenashallmarks
ofAlzheimer’s disease,andha ve been
thetar getofm anyoft hedrugsint rial.
The past decade has brought
change, partly due to theadvocacy
of organizations like the Alzheimer’s
Association andUsAgainstAlzhei-
mer’s. Funding for Alzheimer’s and
dementia researchat the National
Inst itutes ofHealth has increased to
roughly $3 billion,about half ofwhat
is spent on cancer, butfar higher than
the $448 million allocated in 2011.
Drug development is also looking
more promising; there are now more
than 100 ongoing trials.More recent
clinical trials for Biogen’s much-
anticipatedaducanumab and Eli
Lilly’s antibodydonanemab incorpo-
rated biomarker tests that earlier trials
lacked. The near-termattention is
on Biogen’s monoclonal antibodyadu-
canumab, wh ich is awaiting adecision
from theU.S. Food and DrugAdmin-
istration, expectedby June. It has been
a bumpy road for the treatment, with
an advisory panel of the FDAques-
tioning the merits ofaducanumab last
fall (see related article, page 28).
If ap proved, even with conditions,
experts onaging sa yitw ill ser ve as a
signal and bring inarushofi nvest-
ment. Alack of approvalcould have
the opposite impact in the near term,
but researchers note several other
treatments on the horizon, including
drug sfrom Roche’sGenentechand
Japan’s Eisai. Even more encouraging
is the diversification of treatments
deeper in the pipelines thatgob eyond
amyloidand ta utangles—important
because scientists think Alzheimer’s
will ultimatelybet reated much like
heart disease,withamix of therapies
and interventions, or possiblyacombi-
nation therapy.
There has also been progress
around biomarkers and blood tests
that could help with early de tection—
crucial since the disease can emerge
decades beforesymptoms. “Ten years
ago, we would ha ve said it’s science
fiction:There’s no way we can mea-
sure tiny proteins in the brain in
blood,”Carrillo says. But C2N Diag-
nostics introduced a test lastfall that
has been tested on a small group, and
Lilly andRoche Holdings also have
tests, with trials possibly completed
by su mmer and more information
about whether they can be mass pro-
duced also forthcoming.“That would
be game-changing,”Carrillo says.
With recent researchsugg esting
that about 40% ofdementia is modifi-
able, scientists are also testing how
inter ventions around cognitive en-
gagement, diet,sleep, and exercise
could affect riskfactors for Alzhei-
mer’s. That’s another reason there’s a
push fordoctors to make cognition
tests part of theirstandard protocol:
Currentl y, less than half of primary-
care physicians in asurvey by the
Alzheimer’s Association saidit’s part
of theirstandard practice.Technology
could alsofacilitate earlierdetection,
A Costly
Disease
Most costs
associated with
Alzheimer’s
disease are
caretaking-
related and
not covered by
insurance.
$3 57 ,0 00
Thetypical total
lifetime cost,
in 2019 dollars,
for someone with
dementiaover the
rest of their lives,
according to the
Alzheimer’s
Association
Estimatedtotal
health-care
costs of the
diseasevary.
$3 05
billion
One cost estimate
from a 2020 paper
in the American
Journal of Man-
aged Care, and
that number is
expected toreach
$1 trillionby 2050