Alzheimer’s, or some­thing dif­fer­ent?

New tools may help doc­tors dis­tin­guish be­tween de­men­tia’s forms to im­prove care.

Los Angeles Times - - CALIFORNIA - MELISSA HEALY melissa.healy@la­times.com Twit­ter: @LATMelis­saHealy

New tools may help physi­cians dis­tin­guish be­tween de­men­tia’s forms to im­prove care.

Alzheimer’s dis­ease now af­fects an es­ti­mated 5.5 mil­lion Amer­i­cans, and af­ter decades of fever­ish work, re­searchers have failed to find a treat­ment that halts or re­verses the in­ex­orable loss of mem­ory, func­tion and think­ing abil­ity that char­ac­ter­ize this feared ill­ness.

But re­searchers have been quite suc­cess­ful at de­vis­ing ways to di­ag­nose Alzheimer’s ear­lier and ear­lier. And that ca­pa­bil­ity has emerged along­side ev­i­dence of a tan­ta­liz­ing pos­si­bil­ity: that if you can catch the dis­ease early enough — ide­ally when symp­toms of con­fu­sion or mem­ory loss are just emerg­ing, or be­fore — some ther­a­pies al­ready in hand might es­sen­tially halt its progress.

For any­one who de­tects some men­tal slip­page and won­ders, “Is it Alzheimer’s?” the state of de­men­tia re­search raises a very real, and very wrench­ing, dilemma: If I can know, do I want to know?

That is, if it’s Alzheimer’s dis­ease, would I do any­thing dif­fer­ently? Would there be some ben­e­fit in know­ing, for my loved ones, for my­self?

Doc­tors and in­sur­ers, in­clud­ing the fed­eral gov­ern­ment, which ad­min­is­ters Medi­care, are ask­ing vari­ants of the same ques­tions: If an ef­fec­tive test, which costs $3,000 to $5,000, can di­ag­nose de­men­tia early and dis­tin­guish Alzheimer’s from other forms of de­men­tia, should it be rec­om­mended to pa­tients with cog­ni­tive con­cerns who are rou­tinely cov­ered by their in­sur­ance? Would it make pa­tients’ lives bet­ter and per­haps lower the cost of their care?

Newly un­veiled re­search is bring­ing some clar­ity to such de­lib­er­a­tions. And other new re­search, pub­lished last month in the jour­nal Neu­rol­ogy, pro­poses a new di­ag­nos­tic tool that may be able to de­tect Alzheimer’s and dis­tin­guish it from an­other form of de­men­tia more sim­ply and cheaply.

At the Alzheimer’s Assn. In­ter­na­tional Con­fer­ence in Lon­don last month, re­searchers re­ported their pre­lim­i­nary find­ings from a trial that is test­ing the im­pact of di­ag­nos­tic test­ing for Alzheimer’s dis­ease on nearly 19,000 Medi­care ben­e­fi­cia­ries.

All of these study par­tic­i­pants — largely peo­ple in their 70s, all with a di­ag­no­sis of ei­ther “mild cog­ni­tive im­pair­ment” or atyp­i­cal de­men­tia — are liv­ing with the un­con­firmed sus­pi­cion that they have Alzheimer’s. The study is un­der­writ­ten by the Cen­ters for Medi­care and Med­i­caid Ser­vices and the Alzheimer’s Assn. It set out to find whether know­ing — get­ting the costly test that would of­fer ei­ther con­fir­ma­tion or re­prieve — would change the way that pa­tients with cog­ni­tive trou­bles are treated, or the way that they plan their lives.

The pre­lim­i­nary re­sults sug­gested it did. Af­ter get­ting the re­sults of a PET brain scan to de­tect and mea­sure amy­loid de­posits, which are the key hall­mark of Alzheimer’s dis­ease, about two-thirds of the sub­jects saw their med­i­ca­tion reg­i­mens changed or were coun­seled dif­fer­ently by their doc­tors about what to ex­pect.

That new in­for­ma­tion may have guided fam­ily care­givers in plan­ning their own futures, or prod­ded pa­tients to make fi­nan­cial de­ci­sions and power-ofat­tor­ney as­sign­ments sooner. Some who learned that they did not have Alzheimer’s dis­con­tin­ued med­i­ca­tions that can have un­pleas­ant side ef­fects. Others learned they do have Alzheimer’s and de­cided to en­roll in clin­i­cal tri­als that will test new drugs.

A sec­ond study pre­sented in Lon­don an­a­lyzed data from sev­eral stud­ies and found that in a large pop­u­la­tion of re­search par­tic­i­pants with cog­ni­tive con­cerns, brain amy­loid PET scans led to a change in di­ag­no­sis in about 20% of cases.

“Peo­ple should know what’s com­ing,” said Dr. Maria Car­rillo, chief science of­fi­cer for the Alzheimer’s Assn. The Cen­ters for Medi­care and Med­i­caid Ser­vices has given amy­loid scans a pro­vi­sional ap­proval, mean­ing it does not rou­tinely pay for them. The re­sults may guide the agency to re­think its po­si­tion, she added.

The PET scan bore bad news for Ken Lehmann, who en­rolled last year in the IDEAS trial, short for Imag­ing De­men­tia — Ev­i­dence for Amy­loid Scan­ning. Af­ter his long, slow de­cline that had flum­moxed doc­tors, Lehmann’s brain scan clearly showed he has Alzheimer’s dis­ease.

The cer­tainty that has brought has been a long time com­ing. When Lehmann be­gan with­draw­ing from friends, for­get­ting to pay bills and hav­ing trou­ble fol­low­ing con­ver­sa­tions, he was just 58. Now, he’s 80.

Lehmann had al­ways been con­sid­ered a “Re­nais­sance man” — a fur­ni­ture com­pany ex­ec­u­tive who re­built Porsches, played bas­ket­ball and loved to en­ter­tain friends, said his wife, Mary Mar­garet Lehmann. But as years passed, his judg­ment seemed off. He would lose track of points he was mak­ing, and some­times of where he was at.

It would take the loss of their home and a busi­ness bank­ruptcy for the Lehmanns to de­mand an­swers to what was go­ing on. In 2009, they moved from Sacra­mento to Ed­ina, Minn., to live with a daugh­ter. And there, at last, they found a neu­rol­o­gist who, de­spite ini­tial skep­ti­cism (“But he presents so well!” the doc­tor pro­claimed), di­ag­nosed de­men­tia.

For the Lehmanns and many pa­tients and fam­i­lies like them — as well as for neu­rol­o­gists — that di­ag­no­sis is of­ten just the be­gin­ning of a deeper mys­tery.

Alzheimer’s dis­ease is the most feared and most com­mon form of de­men­tia, ac­count­ing for 60% to 80% of all de­men­tia cases di­ag­nosed. But at least seven other forms of de­men­tia, and de­men­tia linked to the move­ment dis­or­der Parkin­son’s dis­ease, can cause loss of mem­ory, rea­son­ing, judg­ment and the abil­ity to speak, com­pre­hend and care for one­self.

To the es­ti­mated 16 mil­lion Amer­i­cans liv­ing with some form of cog­ni­tive im­pair­ment, telling the dif­fer­ence could have a sig­nif­i­cant ef­fect. De­men­tia forms with dif­fer­ent ori­gins progress dif­fer­ently — or some­times not at all. They re­spond best to dif­fer­ent med­i­ca­tions and will come to re­quire dif­fer­ent lev­els of care and treat­ment. Some, though not Alzheimer’s, can even be re­versed with treat­ment.

Be­ing able to dis­tin­guish which form of de­men­tia a pa­tient has should help doc­tors and care­givers make bet­ter choices.

But it’s a ques­tion that un­til re­cently could be an­swered only af­ter death. At that point, a post­mortem ex­am­i­na­tion of the brain could be done to look for the built-up clumps and tan­gles of beta-amy­loid pro­teins, the over­all shrinkage, and the loss of neu­rons in the brain’s hip­pocam­pus that are col­lec­tively the hall­marks of Alzheimer’s.

No more. Im­proved med­i­cal imag­ing tech­nolo­gies de­vel­oped over the last decade have made it pos­si­ble to peer in­side the brain of a liv­ing pa­tient, de­tect and mea­sure the ac­cu­mu­la­tion of beta-amy­loid, and make a de­fin­i­tive di­ag­no­sis.

In 2012, the Food and Drug Ad­min­is­tra­tion took a first step in mak­ing such imag­ing pos­si­ble, giv­ing its bless­ing to the imag­ing agent flor­be­tapir F18, which binds to amy­loid ag­gre­gates in the brain and al­lows a PET scan to make the di­ag­no­sis. In 2013, two new imag­ing agents won FDA ap­proval.

Re­search pub­lished in the jour­nal Neu­rol­ogy last month sug­gested that tran­scra­nial mag­netic stim­u­la­tion, a tech­nique that can se­lec­tively turn up or down ac­tiv­ity in dif­fer­ent parts of the brain, could prove use­ful in dis­tin­guish­ing Alzheimer’s dis­ease from fron­totem­po­ral de­men­tia.

In many ways, Ken Lehmann’s symp­toms fit neatly into a di­ag­no­sis of fron­totem­po­ral de­men­tia. A form of cog­ni­tive im­pair­ment that typ­i­cally be­comes ev­i­dent ear­lier than most cases of Alzheimer’s, FTD of­ten af­fects judg­ment, per­son­al­ity and ver­bal com­mu­ni­ca­tion. This form of de­men­tia pro­gresses as in­ex­orably as does Alzheimer’s. But its typ­i­cal course dif­fers slightly.

As an en­rollee in the IDEAS trial, Lehmann was pre­pared to learn what it was he had.

“I had come to the con­clu­sion they just don’t know,” Lehmann said from his home in Min­nesota. “In seven years, my jour­ney of de­cline has been very minis­cule, and they don’t know why.”

It turns out, he added, “I have all the biomark­ers of Alzheimer’s dis­ease.”

Once he and his wife learned that, they stepped up their prepa­ra­tions for fur­ther de­cline. And they re­dou­bled their ef­forts to do things that bring joy, and that may slow Ken’s de­cline as well.

They fol­low a diet rich in fatty fish, health­ful fats and fruits and veg­eta­bles, and Ken does wood­work­ing.

He also sings in a Min­neapo­lis cho­rus, Giv­ing Voice, with other de­men­tia pa­tients. He has re­gained a long-lost abil­ity to read mu­sic.

“Just not know­ing is very dis­con­cert­ing,” said Mary Mar­garet, who is her hus­band’s prin­ci­pal care­giver. “I don’t know what the time­line is, but I now know what the needs are, in terms of fi­nan­cial and le­gal needs and end-of-life is­sues. Those all need to be planned for ahead of time, and now we have all of that in place. To me, that’s a safety net.”

Matt Rourke As­so­ci­ated Press

FOR ANY­ONE who de­tects men­tal slip­page and won­ders if it’s Alzheimer’s, the state of de­men­tia re­search raises a dilemma: If I can know, do I want to? Doc­tors and in­sur­ers are ask­ing vari­ants of that ques­tion.

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