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Alzheimer's Disease (Transcript)
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ANNOUNCER: "SECOND OPINION" IS BROUGHT TO YOU BY BLUE CROSS/BLUE SHIELD, ACCEPTED IN ALL 50 STATES. BLUE CROSS/BLUE SHIELD -- LIVE FEARLESS.

 

ANNOUNCER: "SECOND OPINION" IS PRODUCED IN CONJUNCTION WITH U.R. MEDICINE,

PART OF UNIVERSITY OF ROCHESTER MEDICAL CENTER, ROCHESTER, NEW YORK.

 

>>DR. PETER SALGO: THIS IS "SECOND OPINION." I'M YOUR HOST, DR. PETER SALGO.

THIS WEEK'S MYTH OR MEDICINE -- "FLU SHOTS INCREASE YOUR RISK OF ALZHEIMER'S DISEASE"? AND SPECIAL GUEST JOANNE DeHOND. SHE WITNESSED HER MOTHER'S

STRUGGLE WITH ALZHEIMER'S.

 

>>JOANNE DEHOND: MY MOM WAS PROBABLY IN HER 60s WHEN WE FIRST STARTED TO NOTICE SOME CHANGES IN HER BEHAVIOR. SHE WAS COMING TO MY HOUSE. MY CHILDREN WERE SMALL. AND SHE KEPT GOING TO THE WRONG HOUSE.

 

>> DR. PETER SALGO: JOANNE IS HERE FOR A SECOND OPINION.

 

>> DR. PETER SALGO: THANKS SO MUCH FOR BEING HERE, JOANNE. YOU'VE GOT A LOT TO TELL US, I KNOW. SO WHAT I WANT TO DO IS GET RIGHT TO WORK AND INTRODUCE YOU TO YOUR "SECOND OPINION" PANEL. THEY'RE HERE TO HELP YOU, AND THEY'LL BE HEARING YOUR STORY FOR THE FIRST TIME. DR. JASON KARLAWISH IS HERE FROM THE PERELMAN SCHOOL OF MEDICINE AT THE UNIVERSITY OF PENNSYLVANIA. AND DR. MARK MAPSTONE FROM THE UNIVERSITY OF ROCHESTER SCHOOL OF MEDICINE.GENTLEMEN, THANK YOU FOR COMING.

 

>> DR. JASON KARLAWISH: IT'S A PLEASURE.

 

>>DR. PETER SALGO TELL US A LITTLE BIT ABOUT YOUR MOM, BECAUSE THIS STORY REALLY DOES BEGIN WITH THE STORY OF YOUR MOM.

 

>>JOANNE DEHOND: MY MOM WAS PROBABLY IN HER 60s WHEN WE FIRST STARTED TO NOTICE SOME CHANGES IN HER BEHAVIOR.

 

>> DR. PETER SALGO: TELL ME ABOUT WHO YOUR MOM WAS. WHAT WAS HER PERSONALITY LIKE?

 

>>JOANNE DEHOND: VERY SWEET, VERY HAPPY-GO-LUCKY. UM, NEVER HAD A HARSH

WORD TO SAY. WE CALLED HER "LOVELY," BECAUSE SHE USED TO SAY EVERYTHING WAS -- ANY, ANY ADJECTIVE WAS LOVELY.

 

>>DR. PETER SALGO: MM-HMM. HOW WAS HER MEMORY, AS A RULE?

 

>>JOANNE DEHOND: AS A RULE, IT WAS FINE.

 

>>DR. PETER SALGO: OKAY. SHE HAD A GOOD MEMORY FOR DATES AND FAMILY ANNIVERSARIES, AND THINGS LIKE THAT?

 

>>JOANNE DEHOND: OH, YEAH, HISTORY.

 

>>DR. PETER SALGO: BUT THINGS BEGAN TO CHANGE. WHAT HAPPENED?

 

>> JOANNE DEHOND: SMALL THINGS IN THE BEGINNING. I THINK ONE OF MY FIRST MEMORIES THAT I REMEMBER IS, SHE WAS COMING TO MY HOUSE. MY CHILDREN WERE SMALL. AND SHE KEPT GOING TO THE WRONG HOUSE -- ONE THAT WAS SIMILAR IN SHAPE OR

STYLE, BUT NOT COLOR, THAT WAS AT THE BEGINNING OF THE BLOCK, AND OURS WAS AT THE BACK OF THE BLOCK. AND SHE WOULD COME AND SAY, "OH, I WENT TO THAT HOUSE AGAIN," TO THE POINT THAT THE PEOPLE GOT TO KNOW HER [Chuckles] AND WOULD SAY, "OH, NO," AND I DIDN'T REALIZE AT THE TIME, BUT IT WAS PROBABLY THE BEGINNING OF SOME SIGNS.

 

>>DR. PETER SALGO: ANYTHING ELSE THAT YOU NOTICED, OTHER BEHAVIORS?

 

>>JOANNE DEHOND: LEAVING HER PURSE IN HER GROCERY CART ON MULTIPLE OCCASIONS. SHE WOULD PACK UP THE GROCERIES AND JUST LEAVE THE PURSE PART THERE.

 

>>DR. PETER SALGO: AND WE SPOKE BEFORE THE SHOW -- YOU SAID THAT WHEN YOU TELEPHONED, TYPICALLY IN THE PAST, YOU AND SHE WOULD HAVE A CONVERSATION ON THE PHONE, BUT THEN THAT CHANGED TOO.

 

>>JOANNE DEHOND: YEAH, MY MOM AND I USED TO TALK DAILY. AND NOT THAT I DIDN'T TALK TO MY DAD, BUT IT WAS, YOU KNOW, TALK TO MY MOM. AND I NOTICED MORE AND MORE SHE WOULD GIVE ME "HELLO, HOW ARE YOU," SOMETHING VERY SIMPLE, BUT THEN SHE WOULD HAND THE PHONE TO MY DAD.

 

>>DR. PETER SALGO: AND YOU NOTICED THESE CHANGES.

 

>>JOANNE DEHOND: MM-HMM.

 

>>DR. PETER SALGO: DID YOU ASK YOUR DAD ABOUT IT?

 

>>JOANNE DEHOND: WE DID. MY BROTHERS AND I DID.

 

>> DR. PETER SALGO: AND WHAT DID HE SAY?

 

>>JOANNE DEHOND: SHE WAS FINE, IT WAS PART OF GETTING OLDER, WE DIDN'T NEED TO WORRY.

 

>> DR. PETER SALGO: WERE YOU WORRIED?

 

>>JOANNE DEHOND: YEAH.

 

>>DR. PETER SALGO: OKAY. I MEAN, YOU HAVE SOME MEDICAL BACKGROUND. IT'S FAIR TO TELL OUR AUDIENCE YOU'RE A NURSE. BUT I SUSPECT -- CORRECT ME IF YOU THINK I'M WRONG – THAT MOST ANY FAMILY MEMBER WHO KNEW THE BASELINE CAPABILITIES OF A PARENT AND SAW THIS CHANGE WOULD WORRY ABOUT IT AS WELL. GENTLEMEN, DOES THIS WORRY YOU?

 

>>DR. JASON KARLAWISH: YES.

 

>>DR. PETER SALGO: IN TERMS OF WHAT? WHAT IS GOING ON HERE?

 

>>DR: JASON KARLAWISH: WHAT WORRIES ME IS THE CHANGE IN HER FUNCTIONAL ABILITY -- THAT, IN PARTICULAR, HER ABILITY TO DRIVE OR USE TRANSPORTATION TO GET FROM ONE PLACE TO THE OTHER. THAT, OF ALL THE THINGS YOU'VE NARRATED, THAT'S CONCERNING. AND YOU'RE RIGHT, IT WARRANTS A WORK-UP.

 

>>DR. PETER SALGO: BUT, I MEAN, COME ON! SHE'S GETTING OLD. SO SHE FORGETS A FEW THINGS HERE AND THERE. I MEAN, ISN'T THAT TRADITIONALLY WHAT OLDER PEOPLE DO?

 

>> DR. MARK MAPSTONE: WELL, SHE'S 60, OR IN HER 60s. AND THAT'S ON THE YOUNG SIDE FOR THESE SORTS OF CHANGES TO OCCUR. AND THERE ARE CERTAINLY OTHER THINGS THAT ONE MIGHT THINK ABOUT, BUT I'D BE WORRIED AT THIS POINT, GIVEN THE STORY THAT YOU'VE TOLD ME.

 

>> DR. PETER SALGO: WELL, LET'S GO FORWARD A LITTLE BIT MORE. NOW IT'S MARCH OF 2011. ALL RIGHT, HOW LONG HAVE THESE SYMPTOMS BEEN GOING ON WHEN YOU GET TO MARCH 2011?

 

>> JOANNE DEHOND: CLOSE TO 10 YEARS, PROBABLY.

 

>>DR. PETER SALGO: SO A DECADE. A DECADE -- WHATEVER IS GOING ON HAS BEEN HAPPENING GRADUALLY. BUT THEN THERE WAS AN EVENT. WHAT HAPPENED IN MARCH OF 2011?

 

>>JOANNE DEHOND: MY DAD BECAME ILL.

 

>> DR. PETER SALGO: OKAY.

 

>>JOANNE DEHOND: HE WAS DIAGNOSED WITH A BRAIN TUMOR.

 

>>DR. PETER SALGO: OKAY, AND YOU WEREN'T LIVING WITH YOUR PARENTS AT THE TIME.

 

>>JOANNE DEHOND: NO, MY PARENTS WERE AT THEIR WINTER HOME IN NORTH CAROLINA, AND I GOT A CALL -- I WAS WORKING. I GOT A CALL FROM THE NURSING STAFF AT THE HOSPITAL THAT THEY BROUGHT HIM TO, ASKING ME A LOT OF QUESTIONS ABOUT MY DAD, ASKING ME TO COME AS SOON AS I COULD. AND I WAS A LITTLE -- "WELL, WHERE IS MY MOM?" YOU KNOW, THINGS THAT MY MOM SHOULD HAVE BEEN ABLE TO ANSWER -- "IS HE ALLERGIC TO ANYTHING?" "DOES HE HAVE A PAST MEDICAL HISTORY?" AND THEY SAID, "IS YOUR MOTHER THE NICE LITTLE IRISH LADY WHO KEEPS BRINGING COOKIES UP TO THE FLOOR?" OR TO THE EMERGENCY ROOM?  [Laughs] I SAID, "YEAH, THAT WOULD BE MY MOM." SHE WAS COMPLETELY UNABLE TO BE OF ANY ASSISTANCE IN HIS HISTORY, IN A PLAN FOR HIM, IN WHAT TO DO. SHE JUST SEEMED TO HAVE STEPPED AWAY FROM THE WHOLE THING.

 

>>DR. PETER SALGO: SO THIS WAS A CLEAR BREAK.

 

>>JOANNE DEHOND: YES.

 

>>DR. PETER SALGO: SOMETHING SHEARED AT THIS POINT. I THINK YOU'VE TOLD ME THAT IT WAS LIKE SHE WAS OVER A CLIFF.

 

>>JOANNE DEHOND: YEAH.

 

>>DR. PETER SALGO: SO WHAT'S GOING ON HERE, IN YOUR EXPERIENCE? WHAT DO YOU THINK?

 

>>DR. MARK MAPSTONE: WELL, CERTAINLY, STRESSORS IN THE ENVIRONMENT CAN PRECIPITATE MORE RAPID DECLINE. PEOPLE FEEL OVERWHELMED WITH THESE SITUATIONS AND CAN'T REALLY RISE TO THE TASK THAT THEY WERE POSSIBLY ABLE TO DO BEFORE. IN ADDITION, THESE THINGS TEND TO BRING TO LIGHT COMPENSATION THAT WAS PROVIDED BY THE SPOUSE -- AND THAT'S WHAT WORRIES ME HERE, IS THAT IT'S POSSIBLE THAT HER HUSBAND, YOUR FATHER, WAS ACTUALLY SORT OF MANAGING THINGS AND THAT SHE WAS NOT AS COMPETENT AS SHE MAY HAVE BEEN BEFORE.

 

>>DR. PETER SALGO: IS THAT WHAT WAS GOING ON? WAS YOUR DAD COVERING ALL THESE YEARS AND PROPPING HER UP?

 

>>JOANNE DEHOND: YEAH.

 

>>DR. PETER SALGO: WHAT WOULD HE DO?

 

>>JOANNE DEHOND: WHEN WE TALKED TO HIM, WHEN HE WOKE UP IN THE NEXT FEW DAYS, HIS FIRST CONCERN WAS TO TELL US, "DON'T GIVE HER A CREDIT CARD. DON'T GIVE HER A CHECKBOOK."

 

>> DR. PETER SALGO: SO HIS FIRST THOUGHT WAS FOR HER.

 

>>JOANNE DEHOND: YES.

 

>>DR. PETER SALGO: OKAY.

 

>>JOANNE DEHOND: HE WAS, UM, HE -- HE STARTED GIVING US INSTRUCTIONS OF THINGS HE'D BEEN DOING. HE SAID, "SHE HASN'T HAD A CHECKBOOK IN A LONG, LONG TIME." WE TOOK HER TO THE GROCERY STORE TO TRY TO GET HER SOME GROCERIES WHEN MY DAD WAS HOSPITALIZED, AND, "WHAT CEREAL DO YOU LIKE?" "THE YELLOW BOX." SHE WOULD NOT ENGAGE IN CONVERSATIONS ABOUT HIS ILLNESS.

 

>>DR. PETER SALGO: OKAY. AND NOW, WE'VE BEEN TIPTOEING AROUND THIS, JUST AS YOUR FAMILY WAS, FRANKLY.

 

>>JOANNE DEHOND: MM-HMM.

 

>>DR. PETER SALGO: JUST AS SHE WAS. AND YOUR DAD. WHAT ARE WE TIPTOEING AROUND? IS THIS ALZHEIMER'S? IS THAT WHAT THIS IS SOUNDING LIKE?

 

>>DR. JASON KARLAWISH: IT'S, UH, CONCERNING FOR A CHRONIC PROGRESSIVE LOSS IN COGNITIVE ABILITIES IN SOMEONE WHO PREVIOUSLY WAS COGNITIVELY NORMAL AND FUNCTIONING IN THE WORLD. IT RAISES THE CONCERN CERTAINLY OF A DEMENTIA, AND IN THIS COUNTRY AT THIS TIME, THE MOST COMMON CAUSE IS ALZHEIMER'S. SO THAT'S HIGH ON THE DIFFERENTIAL, BUT IT'S NOT THE ONLY POTENTIAL CAUSE HERE.

 

>> DR. PETER SALGO: YOU'D HAVE TO RULE SOME OTHER STUFF OUT.

 

>> DR. MARK MAPSTONE: DEFINITELY. SO THERE ARE OTHER THINGS THAT CAN CAUSE A DEMENTIA. REMEMBER THAT ALZHEIMER'S IS A FORM OF DEMENTIA. SO IT'S ONE WAY THAT YOU CAN GET A DEMENTIA. SO THERE ARE OTHER THINGS TO LOOK AT.

 

>>DR. PETER SALGO: WHAT IS ALZHEIMER'SDISEASE?

 

>>DR. JASON KARLAWISH: ALZHEIMER'S DISEASE IS A DISEASE OF THE BRAIN. IT'S THE MOST COMMON CAUSE OF DEMENTIA. IT'S CHARACTERIZED BY TWO DIFFERENT PATHOLOGIES SEEN IN THE BRAIN -- AMYLOID PLAQUES AND TAU TANGLES. THE EARLIEST SYMPTOMS ARE TYPICALLY IN MEMORY, BUT ALSO YOU SEE EARLY CHANGES IN ATTENTION, CONCENTRATION. IT'S A CHRONIC AND PROGRESSIVE DISEASE LASTING OFTEN AS LONG AS 10 TO 15 YEARS.

 

>>DR. PETER SALGO: AND WHEN SOMEBODY COMES TO YOU WITH COMPLAINTS THAT MIGHT BE CONSISTENT WITH ALZHEIMER'S, HOW DO YOU NAIL THE DIAGNOSIS? "IT'S ALZHEIMER'S. IT'S NOT SOMETHING ELSE."

 

>>DR. MARK MAPSTONE: WELL, ALZHEIMER'S ULTIMATELY ENDS UP BEING A DIAGNOSIS OF EXCLUSION IN MANY RESPECTS, IS THAT YOU'VE GOT TO RULE OUT A LOT OF THESE OTHER THINGS THAT CAN CAUSE THESE SYMPTOMS -- MEMORY LOSS, DIFFICULTY COMING UP WITH WORDS -- IN AN OLDER ADULT, AND THAT LIST OF DIFFERENTIAL DIAGNOSES IS VERY LONG, AND SO THERE ARE A LOT OF TESTS THAT NEED TO BE DONE FIRST IN ORDER TO KIND OF COME TO THAT CONCLUSION THAT THIS IS ALZHEIMER'S AS OPPOSED TO SOMETHING ELSE.

 

>> DR. PETER SALGO: SO A DIAGNOSIS OF EXCLUSION IS FRUSTRATING.

 

>> DR. JASON KARLAWISH: IT IS. I MEAN, THE CORE THING IS HISTORY, HISTORY, HISTORY, FROM NOT JUST THE PATIENT, BUT A KNOWLEDGEABLE INFORMANT, SO THAT'S A BIT OF A CHALLENGE -- YOU NEED TO TALK TO TWO PEOPLE. CAREFUL NEUROLOGIC EXAM, AND THEN THAT GUIDES SOME FOCUSED TESTING, INCLUDING COGNITIVE TESTING AND BRAIN IMAGING, AND WITH THAT CLUSTER OF DATA, YOU CAN START TO ARRIVE AT A DECENT CERTAINTY THAT THIS PERSON, "A," HAS DEMENTIA, AND "B," THAT THE MOST LIKELY CAUSE IS ALZHEIMER'S.

 

>> DR. PETER SALGO: OKAY. NOW, WITHIN A MONTH OF YOUR DAD'S DIAGNOSIS, YOU HAD TO FIND A FACILITY FOR YOUR MOM. SHE WAS INCAPABLE OF CARING FOR HERSELF.

 

>>JOANNE DEHOND: MY DAD GOT SICK ON MARCH 7th. BY THE END OF THAT MONTH, BEFORE THE MONTH WAS OVER, MY MOM WAS IN MEMORY CARE -- IN KIND OF ASSISTED LIVING, MEMORY CARE, BECAUSE MY DAD HAD BECOME A FULL-TIME JOB, WAS ABOUT TO ENTER A LONG HOSPITALIZATION, AND IT WOULD BE IMPOSSIBLE TO LEAVE HER ALONE.

 

>> DR. PETER SALGO: THIS BEGS THE QUESTION, I GUESS -- YOUR DAD WAS AWARE. YOU GUYS AS A FAMILY WERE AWARE. HOW AWARE DO YOU THINK YOUR MOM WAS PRIOR TO THIS ACUTE BREAK THAT SOMETHING WAS WRONG?

 

>>JOANNE DEHOND: I THINK IN THE BEGINNING SHE WAS MORE AWARE. I DEFINITELY THINK AS TIME WENT BY, THE YEARS WENT BY, SHE WAS LESS FIGHTING IT AND MORE JUST FOLLOWING MY DAD'S PATH AND NOT REALIZING IT AS MUCH. I'M SURE THERE WAS A LONG PERIOD OF TIME WHERE SHE WAS CONSCIOUSLY HIDING IT.

 

>>DR. PETER SALGO: AND WHEN YOU FINALLY HAD TO FIND SOMEPLACE FOR HER TO LIVE THAT WASN'T HER HOME, DID SHE KNOW WHERE SHE WAS?

 

>>JOANNE DEHOND: NO.

 

>>DR. PETER SALGO: WHAT DID SHE TELL YOU?

 

>>JOANNE DEHOND: WE TOLD HER THAT MY DAD WAS GOING IN THE HOSPITAL, WE DIDN'T WANT HER TO BE HOME ALONE, AND THAT WE WERE GOING TO HAVE HER STAY AT A BED AND BREAKFAST.

 

>> DR. PETER SALGO: AND BY THE WAY, THEY HAD MADE THE DIAGNOSIS OF ALZHEIMER'S AT THAT POINT.

 

>>JOANNE DEHOND: YEAH, WE SAW A PHYSICIAN AS SOON AS WE GOT BACK TO ROCHESTER, WHO MADE THE DIAGNOSIS OF ALZHEIMER'S.

 

>>DR. PETER SALGO: NOW, YOU COULD HAVE SAID, "NO, MOM, YOU'RE NOT IN A BED AND BREAKFAST. YOU'RE IN A FACILITY." BUT YOU DECIDED TO GO THE OTHER WAY AND LIVE IN HER WORLD. IT WAS LESS PAINFUL FOR HER AND POSSIBLY EASIER FOR YOU?

 

>>JOANNE DEHOND: IT WAS THE ADVICE OF SOME PEOPLE THAT WE TALKED TO WHO HAD BEEN THROUGH THIS – SOME MEDICAL PEOPLE, THAT SAID, "YOU CAN'T BRING HER BACK TO YOUR WORLD. YOU HAVE TO LIVE IN HERS."

 

>> DR. PETER SALGO: AND THEN, SLOWLY, SHE BEGAN TO...FORGET EVEN HER FAMILY?

 

>>JOANNE DEHOND: YES. WHEN WE MOVED HER TO THE INDEPENDENT LIVING, I HAD BROUGHT HER DRESSER, HER PHOTOS, AND MADE IT HOMEY. AND THAT STILL DIDN'T CUE HER -- WHY WOULD THE BED AND BREAKFAST HAVE ALL HER FURNITURE IN IT?

 

>> DR. PETER SALGO: OKAY. AND BY CHRISTMAS OF 2012, WHAT HAPPENED?

 

>> JOANNE DEHOND: CHRISTMAS OF 2012, SHE WAS DIAGNOSED WITH SOME SIGNIFICANT G.I. ILLNESS.

 

>> DR. PETER SALGO: OKAY.

 

>> JOANNE DEHOND: AND SHE DIED NINE DAYS LATER.

 

>> DR. PETER SALGO: SO, FROM THE TIME, REALLY, THAT YOU MADE THE DIAGNOSIS UNTIL THE TIME SHE DIED WAS TWO YEARS. VERY RAPID. IS THIS A COMMON STORY? IT'S VERY SAD.

 

>>DR. JASON KARLAWISH: YES, IT IS, THAT THE TIME BETWEEN DIAGNOSIS AND DEATH IN POPULATION STUDIES IS ACTUALLY FAIRLY SHORT. AND THOUGH I THINK THE EXPLANATION FOR WHY WE SEE THAT IS JUST WHAT YOUR EXPERIENCE HAS BEEN, JOANNE, SADLY, AND I FEEL VERY BAD FOR WHAT YOU'VE BEEN THROUGH HERE AS A FAMILY -- WHICH IS THE DELAY TO DIAGNOSIS THAT YOU WITNESSED. ESSENTIALLY, YOUR MOTHER WAS DIAGNOSED IN THE MODERATE TO EARLY SEVERE STAGE OF THE DISEASE, SO SHE WAS LIVING THROUGH PROBABLY SIX YEARS OF UNDIAGNOSED ALZHEIMER'S DISEASE, AND YOUR FATHER IN THE ROLE OF A CARETAKER FOR ALL THAT TIME.

 

>>DR. PETER SALGO: IS IT TYPICALLY DIFFICULT FOR A PATIENT, FOR SOMEONE WITH THIS DIAGNOSIS, TO LIVE THROUGH THAT PERIOD?

 

>> DR. MARK MAPSTONE: IT CAN BE, CERTAINLY, AS YOU ALLUDED TO, IN THE EARLY STAGES, WHERE THE AWARENESS IS THERE, AND THE DEFICITS ARE PRESENT TO BOTH THE PATIENT AND THE FAMILY MEMBERS. IT'S A VERY DIFFICULT TIME. BUT YOU ALLUDED TO A UNIQUE FEATURE, WHICH IS SOMETHING WE CALL A GNOSTIC AGNOSIA, WHICH IS A LACK OF AWARENESS OF THE DEFICITS, AND THAT STARTS TO OCCUR IN THE MIDDLE STAGES OF THE DISEASE. SO AS THE DISEASE PROGRESSES, FOR THE PATIENT THE AWARENESS OF THE PROBLEM STARTS TO FADE AWAY. BUT IT'S STILL STRIKINGLY EVIDENT TO THE FAMILY AND THOSE AROUND.

 

>> DR. PETER SALGO: SO THE PAIN, FOR THE PATIENT, IS A BIT AMELIORATED, BUT THE FAMILY HAS TO STRUGGLE ON.

 

>>DR. MARK MAPSTONE: YES.

 

>>DR. PETER SALGO: AND WITH THAT, I'M GOING TO TAKE A LITTLE BREAK. I WANT YOU ALL TO STAY WHERE YOU ARE. WE'RE GOING TO BE RIGHT BACK TO HEAR MORE AND GET YOUR SECOND OPINION. BUT FIRST, HERE'S THIS WEEK'S "MYTH OR MEDICINE."

 

>> NARRATOR: ALZHEIMER'S DISEASE IS THE MOST COMMON FORM OF DEMENTIA. IT HAS NO CURRENT CURE, AND ITS CAUSES ARE NOT FULLY UNDERSTOOD. THIS HAS LED TO MANY THEORIES REGARDING ITS ONSET. ONE OF THEM HAS TARGETED THE FLU SHOT, CLAIMING THAT SOME OF ITS INGREDIENTS MAY INCREASE THE CHANCES OF DEVELOPING THIS DEBILITATING DISEASE. DO FLU SHOTS INCREASE RISK OF ALZHEIMER'S DISEASE? IS THIS MYTH OR MEDICINE?

 

>>DR. ROGER OSKVIG: "FLU SHOTS INCREASE THE RISK OF ALZHEIMER DISEASE" -- THAT IS A MYTH, AND I'M GOING TO TELL YOU WHY. I AM ROGER OSKVIG, PROFESSOR OF MEDICINE, UNIVERSITY OF ROCHESTER MEDICAL CENTER. INFLUENZA VACCINE DOES NOT INCREASE THE RISK OF GETTING ALZHEIMER DISEASE. IF ANYTHING, IT DIMINISHES THE RISK. THERE ARE A LOT OF INDIVIDUALS WHO WONDER WHETHER IMMUNIZATIONS ARE ASSOCIATED WITH NEUROLOGIC DISEASES, INCLUDING THE RISK OF GETTING ALZHEIMER DISEASE. SOME OF IT IS RELATED TO CONCERN ABOUT MERCURY AS A PRESERVATIVE IN OLDER FLU VACCINES. THERE HAVE BEEN AUTOPSY SPECIMENS OF INDIVIDUALS WITH ALZHEIMER DISEASE THAT HAVE NOTED OCCASIONALLY THERE'S INCREASED MERCURY. IN WELL-DONE STUDIES, HOWEVER, IT'S BEEN SHOWN THAT INDIVIDUALS WHO GET IMMUNIZATIONS HAVE A DECREASED RISK OF GETTING ALZHEIMER’S DISEASE. THAT HAS BEEN VALIDATED IN REPEAT STUDIES.

 

>> NARRATOR: A "SECOND OPINION" VIEWER ASKS, "IS IT TRUE THAT COOKING WITH ALUMINUM CAUSES ALZHEIMER'S?"

 

>>DR. ROGER OSKVIG: THE ALUMINUM ASSOCIATION WITH ALZHEIMER’S DISEASE HAS BEEN TOTALLY DISMISSED, AND THE EXPLORATION OF THE CAUSES AND ACCELERATION OF ALZHEIMER DISEASE HAVE GONE COMPLETELY DIFFERENT DIRECTIONS. COOKING WITH ALUMINUM, DRINKING FLUIDS FROM ALUMINUM CANS, ALUMINUM-CONTAINING DEODORANTS ARE NOT ASSOCIATED WITH ALZHEIMER DISEASE. AND THAT'S MEDICINE.

 

>> NARRATOR: NOT SURE IF IT'S MYTH OR MEDICINE? CONNECT WITH US ONLINE. WE'LL GET TO WORK AND GET YOU A SECOND OPINION.

 

>>DR. PETER SALGO WE'RE BACK WITH JOANNE, WHO'S BEEN TELLING US THE STORY ABOUT HER MOM AND HER MOM'S, EFFECTIVELY, 10- TO 12-YEAR STRUGGLE WITH ALZHEIMER'S, AND HER MOM PASSED AWAY AT LEAST IN PART DUE TO THE ALZHEIMER'S. AT THIS POINT, THOUGH, YOUR MOM IS GONE. AND YOU'RE GOING FORWARD. NOW IS YOUR CHANCE, I THINK, TO GET SOME SECOND OPINIONS. WHAT IS YOUR BIGGEST CONCERN? WHAT WOULD YOU LIKE TO ASK THESE EXPERTS?

 

>>JOANNE DEHOND: WHAT WOULD EARLIER HAVE TREATMENT MEANT FOR HER? WHAT COULD WE HAVE DONE SOONER?

 

>> DR. PETER SALGO: IF ANYTHING, RIGHT?

 

>>JOANNE DEHOND: YEAH, IF ANYTHING?

 

>>DR. MARK MAPSTONE: WELL, THAT'S A REALLY GOOD QUESTION, AND THAT'S ONE OF THE ISSUES THAT I THINK WE, AS A FIELD, ARE STRUGGLING WITH NOW, IS THIS NEED FOR EARLIER DIAGNOSIS, AND I THINK YOUR MOTHER'S CASE REALLY HIGHLIGHTS THIS, BECAUSE THERE MAY BE THINGS THAT COULD HAVE BEEN DONE EARLIER. WE HAD, UNFORTUNATELY, THE COMPLICATION OF YOUR FATHER SORT OF FACILITATING HER INDEPENDENCE AND SORT OF KEEPING THIS FROM THE FAMILY. BUT HAD SHE BEEN BROUGHT EARLIER, WE HAVE TO ASSUME THAT WE COULD DIAGNOSE IT EARLIER, AND THEN THE NOTION THAT WE COULD START TREATMENTS EARLIER IS, I THINK, OF THE MOST HELP.

 

>>DR. PETER SALGO: WELL, YOU'LL FORGIVE ME AND ALLOW ME TO BE MORE BLUNT THAN YOU WERE. SO WHAT? I MEAN, THAT'S THE QUESTION I HEAR EVERY DAY. SO WHAT? I GET THE DIAGNOSIS -- SO WHAT?

 

>>DR. JASON KARLAWISH: TWO THINGS -- NUMBER ONE, IT IS QUITE POSSIBLE EARLY IN THE DISEASE YOUR MOTHER WAS SUFFERING. I WOULD EXPECT, ACTUALLY, AND A GOOD CLINICAL ASSESSMENT FOR ANXIETY AND DEPRESSION AS WELL AS DIAGNOSTIC DISCLOSURE CAN HELP A PATIENT MAKE SENSE OF, "AM I GOING INSANE? WHAT'S WRONG WITH ME?" AND I'VE HAD PATIENTS AS RECENTLY AS YESTERDAY IN THE CLINIC TELL ME, "NOW THAT YOU'VE TOLD ME THAT WHAT I'VE BEEN GOING THROUGH IS BECAUSE OF A BRAIN DISEASE, I DON'T FEEL LIKE I'M CRAZY." SO THERE IS A COMPONENT OF THE PATIENT MAKING SENSE OF AN ILLNESS. THE SECOND, THOUGH, IS YOUR FATHER ESSENTIALLY WAS A PATIENT. AND WE HAVE GOOD DATA THAT IF YOU EDUCATE HIM AND TRAIN HIM ABOUT WHAT THIS IS, WHAT TO EXPECT IN THE FUTURE, AND HOW TO MANAGE PROBLEMS, HE DOES BETTER. AND IF HE DOES BETTER, SHE DOES BETTER.

 

>>JOANNE DEHOND: MM-HMM.

 

>>DR. PETER SALGO: BUT TYPICALLY WHEN WE HEAR ABOUT EARLY DIAGNOSIS, IT'S SO THAT WE CAN INTERVENE AND TREAT AND, IF NOT CURE, MAKE IT BETTER. CAN YOU MAKE ALZHEIMER'S BETTER? PHYSICALLY, PHYSIOLOGICALLY BETTER?

 

>>DR. JASON KARLAWISH: THE ANSWER RIGHT NOW IS, SO, PHYSIOLOGICALLY BETTER, INTERRUPTING THE PATHOLOGY? NO.

 

>>DR. PETER SALGO: OKAY. IT'S TYPICAL, AFTER I SPOKE TO YOU, THAT YOUR FIRST THOUGHT WAS ABOUT YOUR MOM.

 

>>JOANNE DEHOND: MM-HMM.

 

>>DR. PETER SALGO: AND CONSIDERING WHAT YOU MIGHT HAVE DONE TO MAKE HER BETTER, BUT HERE YOU ARE NOW. SHE'S GONE. WHAT ELSE ARE YOU AWARE OF? WHAT ELSE ARE YOU AFRAID OF?

 

>>JOANNE DEHOND: AM I GOING TO GET IT?

 

>> DR. PETER SALGO: THAT'S THE QUESTION, ISN'T IT?

 

>>JOANNE DEHOND: IT IS.

 

>>DR. PETER SALGO: WHAT IS HER RISK?

 

>>DR. MARK MAPSTONE: WELL, IT'S CERTAINLY HIGHER THAN THE GENERAL POPULATION WITHOUT A FIRST-DEGREE RELATIVE. DEPENDING UPON WHO YOU READ, BETWEEN 10% TO 15% HIGHER, PERHAPS.

 

>>DR. JASON KARLAWISH: THE YOUNGER THE AGE OF ONSET, THE MORE LIKELY IT SUGGESTS THERE MAY BE A GENETIC COMPONENT TO HER DISEASE, AND THEREFORE, OF COURSE, IN CONSANGUINEOUS RELATIVES.

 

>>DR. PETER SALGO: WHICH BRINGS US TO THE NEXT QUESTION. IF THEY COULD TELL YOU FOR CERTAIN THAT YOU WOULD DEVELOP ALZHEIMER'S AT SOME POINT IN THE FUTURE, WOULD YOU WANT THAT TEST DONE, AND WOULD YOU WANT TO KNOW?

 

>>JOANNE DEHOND: YES.

 

>>DR. PETER SALGO: YOU WOULD? WHY?

 

>>JOANNE DEHOND: WELL, WHAT INFORMATION! I THINK -- AND I THINK IT WOULD -- I THINK IT'S SOMETHING I WORRY ABOUT, AND, OF COURSE, KNOWING IF IT WAS "YES" WOULD

 SPIN ANOTHER LIGHT ON THINGS, BUT I MIGHT MAKE DIFFERENT DECISIONS IN MY LIFE. I MIGHT LIVE A LITTLE DIFFERENTLY. I MIGHT PREPARE MY FAMILY, AND I THINK THAT'S A BIG PIECE FOR ME, IS PREPARING MY CHILDREN... UM, OF HOW TO BETTER PLAN.

 

>>DR. PETER SALGO: IS THE TEST OF MORE VALUE RIGHT NOW TO THE RESEARCH COMMUNITY TO STUDY POPULATIONS, TO TRY TO FIGURE OUT WHERE THIS DISEASE IS GOING THAN IT IS TO THE PATIENT, POTENTIAL PATIENT WHO'S GETTING THE TEST?

 

>>DR. MARK MAPSTONE: YES, ABSOLUTELY.

 

>>DR. JASON KARLAWISH: I COMPLETELY AGREE.

 

>>DR. PETER SALGO: THERE ARE ETHICAL ISSUES WITH ALZHEIMER'S. I MEAN, WITHOUT AN EFFECTIVE CURE, WITHOUT AN EFFECTIVE TREATMENT PER SE, THE WHOLE -- THE WHOLE ASPECT ON THE HORIZON OF AN EARLY TEST FOR THE DEVELOPMENT OF ALZHEIMER'S GOING FORWARD RAISES THE QUESTION OF, "WHY? WHY WOULD YOU WANT IT?" IT'S GOOD FOR RESEARCHERS, MAYBE, ISN'T IT?

 

>>DR. MARK MAPSTONE: ABSOLUTELY.

 

>>DR. JASON KARLAWISH: VERY MUCH.

 

>>DR. PETER SALGO BUT FOR THE PATIENT WHO GETS THAT DIAGNOSIS, GOING FORWARD, IS THAT USEFUL?

 

>>DR. MARK MAPSTONE: WELL, ULTIMATELY IT WILL BE.

 

>>DR. PETER SALGO: IS IT NOW, THOUGH?

 

>>DR. MARK MAPSTONE: THERE'S A PERIOD, A DIFFICULT PERIOD WHERE WE ARE RIGHT NOW, WHERE DIAGNOSTIC TESTS FOR ALZHEIMER'S DISEASE IN THE PRECLINICAL PHASE ARE GOING TO BE MET WITH THE CRITICISM THAT THERE IS NO CURE. WHAT ARE WE GOING TO DO ABOUT THIS? AND THERE'S GOING TO BE THIS PERIOD OF TIME THAT, UNTIL WE DEVELOP A CURE, THAT WE'RE GOING TO HAVE TO STRUGGLE WITH THAT ISSUE. AND PEOPLE LIKE JASON DO THIS SORT OF WORK AND LOOK INTO THIS, BUT ULTIMATELY, HAVING THAT EARLY DIAGNOSIS IS GOING TO MOVE US AS A SCIENTIFIC COMMUNITY TO DEVELOP THESE CURES, THESE DISEASE-MODIFYING THERAPIES, THAT THEN WE WILL HAVE, AND THEN YOU NEED THE PRECLINICAL DIAGNOSIS.

 

>>DR. PETER SALGO: RIGHT, BUT IN THE MEANTIME, YOU'RE ENROLLING PEOPLE IN STUDIES, YOU'RE DOING THIS TEST ON THEM, WITH INFORMED CONSENT, BUT YOU REALLY DON'T HAVE MUCH TO OFFER THEM.

 

>>DR. JASON KARLAWISH: WELL, I WOULD ONLY USE THESE TESTS IN AN ASYMPTOMATIC PERSON WHO'S NOT SEEKING HELP FOR MEASURED COGNITIVE PROBLEMS -- THESE TESTS ARE ONLY USEFUL IN THE CONTEXT OF RESEARCH STUDIES WHERE THE GOAL OF THE RESEARCH STUDY IS TO ACTUALLY VALIDATE WHETHER THE TEST, IN FACT, MEASURES ALZHEIMER'S DISEASE OR NOT. AND SO THERE'S A WEIRD AND TOUGH LEAP TO MAKE HERE, WHICH IS THAT THE STUDIES ARE NOT JUST TO DEVELOP A TREATMENT BUT TO VALIDATE THAT THE TEST ACCURATELY MEASURES THE DISEASE.

 

>>DR. PETER SALGO:SO YOU'RE VALIDATING AND CALIBRATING THE TEST.

 

>>DR. JASON KARLAWISH: EXACTLY.

 

>>DR. PETER SALGO: SO IT'S NOT QUITE THE SAME AS IF YOU CAME IN FOR THE ALZHEIMER'S TEST.

 

>>DR. JASON KARLAWISH: IT ISN'T, AND THIS IS – SO CLINICAL TRIALS ON ALZHEIMER'S DISEASE ARE DOING TWO THINGS RIGHT NOW. THEY ARE DOING WHAT WE ALWAYS THINK CLINICAL TRIALS ARE SUPPOSED TO DO -- DEVELOP AN EFFECTIVE TREATMENT – BUT THEY'RE DOING SOMETHING ELSE THAT CLINICAL TRIALS OCCASIONALLY DO, AND IT'S EVEN MORE IMPORTANT THAN THE TREATMENT, WHICH IS VALIDATE THE VERY THING THE TRIAL MEASURES, NAMELY, THIS "TEST FOR ALZHEIMER'S."

 

>>DR. PETER SALGO: WHICH, OF COURSE, THE WAY YOU PHRASE THAT IS A BIT INTERESTING. "IT'S EVEN MORE IMPORTANT THAN THE TREATMENT." NOT TO THE PERSON WHO'S GOING TO GET SICK.

 

>>DR. JASON KARLAWISH: WELL, YOU KNOW, I'M ON BOTH SIDES ON THIS -- THAT IS TO SAY, I WILL GET ONE OF THESE TESTS SOMEDAY TOO, I WOULD HOPE. BUT YOUR EXACT -- BUT THE ODD THING ABOUT THESE KIND OF DISEASES IS HOW CLINICAL TRIALS ARE VERY IMPORTANT TO SEE IF WE EVEN KNOW WHAT WE'RE THINKING ABOUT AND TALKING ABOUT WHEN WE LABEL IT -- NOT JUST, "ARE WE EFFECTIVELY TREATING?" ONCE WE'VE ESTABLISHED THAT LINK BETWEEN DRUG AND DIAGNOSTIC TEST AND BENEFIT, THEN WE CAN START TO ROLL OUT MORE TREATMENT TRIALS, BUT A LOT OF THESE TRIALS ARE TO VALIDATE.

 

>>DR. PETER SALGO: SO IT'S REALLY IMPORTANT FOR OUR VIEWERS RIGHT NOW NOT TO TAKE AWAY THE WRONG MESSAGE -- THERE IS NO ALZHEIMER'S TEST, DEFINITIVE, CALIBRATED TEST FOR AN ASYMPTOMATIC PERSON GOING FORWARD, A BLOOD TEST OR WHATEVER.

 

>>DR. JASON KARLAWISH: THAT'S ACTUALLY RIGHT. THAT IS CORRECT. WE DO

NOT HAVE THE EQUIVALENT OF, IF YOU WILL, A BLOOD CHOLESTEROL TEST THAT TELLS YOU YOU MAY GET HEART DISEASE. WE DO NOT. THE TRIALS THAT WE ARE DOING NOW ARE TRYING TO VALIDATE AND CREATE THAT, AND IN THREE TO FIVE YEARS, WE MAY SEE THOSE RESULTS. BUT FOR NOW, WE ARE LIVING IN THE WORLD OF RESEARCH HERE.

 

>>DR. PETER SALGO: OKAY, WHICH LEADS ME TO WRAP THIS UP WITH, RIGHT NOW, IN SOMEONE WITH A DIAGNOSIS OF ALZHEIMER'S, WHAT IS THE CURRENTLY ACCEPTED BEST CARE, BEST THERAPY?

 

>>DR. JASON KARLAWISH: WITH ALZHEIMER'S DISEASE DEMENTIA?

 

>>DR. PETER SALGO: YEAH.

 

>>DR. JASON KARLAWISH: EDUCATION AND COUNSELING OF THE PATIENT AND THE FAMILY, SYMPTOMATIC TREATMENT OF THE DISEASE, AND LONGITUDINAL FOLLOW-UP AT LEAST EVERY SIX MONTHS TO ASSESS RATE OF PROGRESSION.

 

>>DR. PETER SALGO: ANY DIETARY INTERVENTIONS, EXERCISE, ANYTHING?

 

>> DR. JASON KARLAWISH: WHAT'S GOOD FOR THE HEART IS GOOD FOR THE BRAIN, IN TERMS OF DIET.

 

>>DR. PETER SALGO: SO THERE'S NO HARM IN GOING ON A HEART-HEALTHY REGIMEN.

 

>>DR. JASON KARLAWISH: NO, AT LEAST ONE ORGAN IS HAPPY.

 

>>DR. PETER SALGO: GREAT. WELL, THANK YOU SO MUCH FOR BEING HERE AND SHARING THE STORY. IT'S NOT AN EASY STORY TO TELL, NOR TO HAVE LIVED THROUGH.

 BUT I'M VERY GRATEFUL THAT YOU JOINED US.

>>JOANNE DEHOND: THANK YOU.

 

>>DR. PETER SALGO: GENTLEMEN, THANK YOU BOTH FOR BEING HERE AS WELL. LET US KNOW WHAT YOU THINK ABOUT TODAY'S DISCUSSION AND JOANNE'S SECOND OPINION BY TWEETING US OR COMMENTING ON OUR FACEBOOK PAGE. AND NOW, FOR THE LAST WORD ON ALZHEIMER'S, HERE'S THIS WEEK'S "SECOND OPINION 5."

 

>>DR. ANTON PORSTEINSSON: HELLO, I'M DR. ANTON PORSTEINSSON, AND I'M HERE TO SHARE FIVE WARNING SIGNS OF DEMENTIA. THE FIRST IS MEMORY LOSS THAT DISRUPTS DAILY LIFE. CHANGES IN MEMORY ARE A PART OF NORMAL AGING, ESPECIALLY RETRIEVING INFORMATION SUCH AS NAMES RIGHT WHEN YOU NEED IT. BUT WHEN FORGETFULNESS IS SO SEVERE IT STARTS TO DISRUPT DAILY LIFE, IT IS NO LONGER A TYPICAL PART OF AGING. THE NEXT SIGN IS IMPAIRED PROBLEM SOLVING AND DECISION MAKING. CHANGES IN REASONING AND JUDGMENT LEAD TO DIFFICULTIES IN MANAGING FINANCIAL MATTERS, TAKING LONGER TO COMPLETE TASKS OR CHORES, SUCH AS FOLLOWING A FAVORITE RECIPE. OFTEN THERE IS LESS ATTENTION TO PERSONAL APPEARANCE OR HYGIENE. THE THIRD IS NEW PROBLEMS WITH SPEAKING OR WRITING. IF YOU ARE NOT ABLE TO FIND THE RIGHT WORDS OR ARE CALLING THINGS BY THE WRONG NAMES SO FREQUENTLY THAT PEOPLE STOP ENGAGING YOU, THIS IS A PROBLEM. HAVING OCCASIONAL TROUBLE WITH VOCABULARY IS NORMAL WHEN AGING, BUT NOT TO THE POINT WHERE YOU ARE NO LONGER ABLE TO COMMUNICATE. ANOTHER SIGN IS DIFFICULTY COMPLETING FAMILIAR TASKS OR DAILY ROUTINES. EXAMPLES ARE FORGETTING THE ROUTE TO A FAMILIAR LOCATION, DIFFICULTY OPERATING APPLIANCES OR ELECTRONICS OR FIXING THINGS AROUND THE HOUSE. AND THE LAST SIGN IS CHANGES IN MOOD OR PERSONALITY. INCREASING ANXIETY AND WORRY WITH FREQUENT IRRITABILITY AND STUBBORNNESS IS COMMONLY SEEN IN PERSONS WITH COGNITIVE DECLINE, ESPECIALLY WHEN OUTSIDE THEIR COMFORT ZONE. THIS CAN PROGRESS TO DEPRESSION OR SUSPICIOUSNESS. AND THAT'S YOUR "SECOND OPINION 5."

 

>>DR. PETER SALGO: THANK YOU SO MUCH FOR WATCHING, AND REMEMBER – YOU CAN GET MORE SECOND OPINIONS AND PATIENT STORIES ON OUR WEBSITE AT secondopinion-tv.org. SEND US YOUR SHOW IDEAS. SHARE YOUR OWN STORY – MAYBE WE'LL INVITE YOU TO BE ON THE SHOW WITH US. YOU CAN CONTINUE THIS CONVERSATION ON FACEBOOK AND TWITTER, WHERE WE ARE LIVE EVERY DAY WITH BREAKING HEALTH NEWS. I'M DR. PETER SALGO. AND I'LL SEE YOU NEXT TIME FOR ANOTHER "SECOND OPINION."

 

>>ANNOUNCER: "SECOND OPINION" IS BROUGHT TO YOU BY BLUE CROSS/BLUE SHIELD, ACCEPTED IN ALL 50 STATES. BLUE CROSS/BLUE SHIELD -- LIVE FEARLESS.

 

>>ANNOUNCER: "SECOND OPINION" IS PRODUCED IN CONJUNCTION WITH U.R. MEDICINE, PART OF UNIVERSITY OF ROCHESTER MEDICAL CENTER, ROCHESTER, NEW YORK.