THANK YOU FOR JOINING US TODAY.
ON BEHALF OF OUR FEDERAL
PARTNERS I WOULD LIKE IS TO
WELCOME YOU TO OUR WEBINAR
SERIES.
I WILL BE YOUR MODERATOR TODAY.
THIS WEBINAR IS A SERIES -- IS A
JOINT FEDERAL PROJECT OF FEDERAL
AGENCIES THAT SUPPORTS HEALTH
AND WELLNESS IN OLDER ADULTS
ACROSS THE UNITED STATES.
THE PARTNER AGENCIES ARE THE
ADMINISTRATION FOR COMMUNITY
LIVING, THE AGENCY FOR HEALTH
CARE AND RESEARCH QUALITY.
THE OFFICE OF THE ASSISTANT
SECRETARY FOR PLANNING AND
EVALUATION.
THE CDC.
THE CENTERS FOR MEDICARE AND
MEDICAID SERVICES, THE INDIAN
HEALTH SERVICE, THE NATIONAL
INSTITUTE ON AGING WITHIN THE
NIH AND THE DEPARTMENT OF
VETERANS AFFAIRS.
YOU'LL SEE THE LOGOS ACROSS THE
BOTTOM OF THE SCREEN.
NEXT SLIDE, PLEASE.
OUR DISCUSSION TODAY WILL BE ON
RESILIENCE IN CAREGIVING.
I'M NOT GOING TO READ OUT ALL OF
THE NAMES OF THE PRESENTATIONS
THAT WE'RE GOING TO HEAR TODAY
BUT I WANT TO INTRODUCE YOU TO
OUR PANELISTS.
WE HAVE LORETTA VENEY.
ENTITLED FROM DECEMBER SPARE TOO
RESILIENCE.
DR. YUANJIN ZHOU.
DR. FAWN COCHRAN AND DIANA
SHULLA COSE.
JUST A COUPLE OF HOUSEKEEPING
ITEMS.
WE'RE GOING TO HAVE A
QUESTION-AND-ANSWER SESSION
AFTER ALL OF THE PANELISTS HAVE
COMPLETED THEIR PRESENTATIONS.
IF YOU WOULD LIKE TO SEND IN A
QUESTION PLEASE SEND IN ON THE
CLICK LIVE FEEDBACK BUTTON.
THAT WILL GET THE QUESTION TO US
AND THEN WE'LL BE ABLE TO ANSWER
AS MANY AS WE CAN AT THE END OF
THE PRESENTATIONS.
WITH THAT, LET'S GET TO OUR
FIRST SPEAKER.
I'D LIKE TO INTRODUCE LORETTA
VENEY.
>>THANK YOU SO MUCH, ERIN FOR
HAVING ME TODAY AND FOR
INTRODUCING ME.
I'M ABSOLUTELY THRILLED TO BE
HERE WITH YOU ALL TODAY TO TALK
ABOUT FROM DESPAIR TO
RESILIENCE.
AND I HOPE YOU'RE GOING TO ENJOY
FOUR OF THE GREATEST LESSONS I
LEARNED FROM BEING MY MOM'S MOM.
I WANT TO INTRODUCE YOU TO
MS. DORIS.
WE'RE DOING A SELFIE AND ONE OF
THE FAVORITE THINGS THAT I LOVE
TO REMEMBER IS SHE IS LOOKING AT
THE SCREEN AND SHE IS SAYING HOW
DID WE GET INTO THAT BOX?
JUST LIKE THAT AND TO THIS DAY I
LAUGH ABOUT THAT.
SHE DIED IN JANUARY OF LAST
YEAR.
2022.
FIRST LESSON: LEARN EVERYTHING
YOU CAN ABOUT THIS DISEASE AND
ADVOCATE, ADVOCATE, ADVOCATE FOR
YOUR LOVED ONE.
THOSE ARE THE FACTS AND FIGURES
AND WHEN I TELL YOU I LEARNED
EVERYTHING I FELT LIKE I WAS
BACK IN GRADUATE SCHOOL.
IT WAS MY NUMBER ONE GOAL TO
LEARN EVERYTHING ABOUT IT.
AND ALSO ABOUT MULTIPLE
SCLEROSIS.
MY SISTER WAS DIAGNOSED TWO
WEEKS AFTER MY MOM WAS DIAGNOSED
WITH DEMENTIA.
MY MOM WAS 77 YEARS OLD WHEN SHE
WAS DIAGNOSED.
SO 16 YEARS FOR US WITH THAT
CRAZY DISEASE.
IT'S ABOUT READING EVERYTHING
THAT YOU CAN GET YOUR HANDS ON.
THIS IS AARP PREPARE TO CARE.
IT HAD CHECKLISTS.
ADDRESSES, PHONE NUMBERS AND
WEBSITES.
I WROTE IN AND DID EVERYTHING I
COULD DO.
AND THE OTHER THING THAT WAS
INTERESTING FOR ME IS IN 2013 WE
WERE WELL INTO THE DISEASE I
DECIDED TO WRITE THIS BOOK ABOUT
MY JOURNEY.
IT ALSO HELPED TO PAY FOR HER
CARE BECAUSE I WAS TERRIFIED AT
77 THAT SHE WOULD OUT LIVE MY
MOMMY SO I WANTED TO MAKE SURE
WE HAD THAT.
BUT I WAS HOPING TO AND SHE
BEING THE FIRST ONE IN OUR
FAMILY TO BE DIAGNOSED WITH THIS
DISEASE I WANTED TO MAKE SURE
OTHER FAMILIES WERE NOT AS
UNPREPARED AS WE WERE.
WE ENDED UP ON THE "NEW YORK
TIMES" AND I WAS SO PROUD TO
HAVE OUR BOOK RECOMMENDED AS
SOMETHING FOR OLDER CARE THAT
WAS REALLY HELPFUL.
NOW, HERE IS THE ADVOCACY PART.
MY MOTHER BROKE HER CLAVICLE
DURING A FALL AND THEY WANTED
HER TO COME TO THE HOSPITAL IN A
WHEELCHAIR AND THAT REQUIRED
MEDICAL TRANS SPORT.
DURING COVID I CALLED TO SEE HOW
MUCH IT WOULD COST.
$400.
WE WERE NOT GOING TO DO $400.
AND SO I ADVOCATED FOR HER.
ITSELF WAS UPSET ABOUT IT AND I
GOT A RIDE WITH THE GROUP HOME
WHERE SHE LIVED.
THEY TOOK US ON THE ACTIVITY BUS
BUT I WROTE ALL KINDS OF LETTERS
ABOUT THAT.
THEY SAID IT WAS THE CLEANING
FEE.
I COULD HAVE CLEANED THE ENTIRE
CITY I LIVED IN FOR $400 BUT
THAT IS ANOTHER STORY.
PLEASE NEVER BE AFRAID TO FIRE A
DOCTOR IF NECESSARY.
MY MOTHER'S FIRST NEUROLOGIST
SAID YOU ARE IN THE BEGINNING
STAGES OF DEMENTIA.
HE NEVER MADE EYE CONTACT OR
ANYTHING.
SHE DIDN'T WANT TO TAKE ANOTHER
MEDICINE AND SHE WAS TRYING TO
PRESCRIBE AND PUSH THE
PRESCRIPTION ACROSS THE TABLE
AND BY THE THIRD TIME SHE SAID I
DON'T WANT TO TAKE THAT.
HE SAID THAT IS WHAT IS WRONG
WITH YOU PEOPLE.
Z YOU JUST WANT TO COMPLAIN.
WE NEVER SAW HIM AGAIN.
SO SWITCH DOCTORS IF YOU FEEL
THAT YOU'RE NOT BEING HEARD.
GO WITH SOMEBODY WITH WOMAN YOU
CAN FEEL COMFORTABLE WITH.
THAT IS LESSON NUMBER ONE.
NUMBER TWO, PREPARE FOR
EVERYTHING.
YEAH.
BE READY FOR ANYTHING.
THE PHOTO ON THE LEFT MY MOTHER
IS ON THE BACK ROW WITH MY
GRANDPARENTS.
SHE WAS 13.
I PUT AT LEAST 700 PHOTOS ON MY
PHONE FROM WHEN HE WAS BORN
UNTIL 1949.
I USED THOSE PHOTOS TO KEEP HER
CALM IN THE CAR.
DC, TRAFFIC.
THINK THAT.
AND TOLD HER HOW TO SWIPE AND
THE PICTURES WOULD SCROLL BY.
IT WAS AMAZING.
SHE WOULD NAME PEOPLE I NEVER
HEARD OF AND IT WAS A WONDERFUL
WAY TO KEEP HER CALM AND
RELAXED.
THIS IS FUNNY.
THIS WAS EASTER YEARS AGO.
MY GRANDDAUGHTER WAS -- 11 AND
THIS WAS THE FIRST PICTURE THAT
WE TOOK WHEN MY MOM WAS GETTING
FEISTY ABOUT FOOD.
SHE SAID I WOULD LIKE A PIECE OF
CAKE AND WE SAID I WANT A PIECE
OF CAKE.
SHE JUST HAD A PIECE OF CAKE.
SO WHATEVER IT TAKES.
EVERY TIME WE TOOK A PICTURE --
WHILE SHE WAS EATING AND THEN
AFTER THE EATING AND AN EMPTY
PLATE AND WE WOULD SHOW HER THE
PICTURE.
SHE WOULD LOOK -- SHE HAS THE
SAME OUTFIT ON AND SHE WOULD SAY
I GUESS I DID HAVE CAKE.
WELL DID I LIKE THE CAKE SO YOU
HAVE TO LEARN THOSE KIND OF
TRICKS TO KEEP THE ARGUING DOWN
AND COME UP WITH STRATEGIES THAT
WORK FOR YOU.
NOW I'M A REALIST.
ONE OF THE HARDEST THINGS IS NOT
ONLY WHEN THEY FORGET WHO YOU
ARE BUT BARELY REMEMBER WHO THEY
ARE.
THAT IS ONE OF THE SADDEST
MOTHER'S DAY PICTURES EVER.
SHE HAS NO IDEA WHERE SHE IS.
THAT IS HEARTBREAKING BUT IT IS
PART OF THE PROCESS.
SHE DID COME AROUND A LITTLE BIT
AND KEPT READING HER MOTHER'S
DAY CARD OUT LOUD.
SO WAIT FOR THOSE BAD TIMES TO
PASS BUT BE READY BECAUSE IT
DOESN'T FEEL GOOD.
WHO KNEW MY MOTHER WOULD RUN
OFF?
WE WERE BORN AND RAISED IN
WASHINGTON, D.C.
BUT BECAUSE I COULD NOT AFFORD
ANYTHING I MOVED TO PRINCE
COUNTY GEORGE'S MARYLAND.
SHE TRIED TO RUN BACK.
MY MOTHER WON'T RUN OFF.
THEY NEVER WONDER UNTIL THEY DO
SO BE READY.
NOW, SAME LESSON BUT LOOK AT THE
LAST SLIDE.
HAVE A PLAN AND A BACK UP PLAN.
THAT MAN IN THAT PICTURE -- THAT
WAS MOTHER'S DAY OF 2016.
IT WAS THE LAST PICTURE OF THE
THREE OF US TOGETHER.
AND WHILE WE WERE ON VACATION IN
NEW YORK MY HUSBAND DIED VERY
SUDDENLY.
THE MOST SHOCKING THING EVER.
WHO WOULD THINK YOUR SPOUSE
WOULD OUT LIVE YOUR PARENT.
FOR WHOM MY HUSBAND DID ALMOST
EVERYTHING.
SHE WAS A RETIRED DC COP.
HE WOULD DRIVE MY MOTHER TO THE
DOCTOR AND THEN THEY WOULD RUN
OFF TO LUNCH AND SHOPPING.
THEY WERE IN SEPARABLE.
AND I DID NOT HAVE A BACK UP
PLAN.
THANKFULLY MY CHURCH STARTED UP
A SUPPORT GROUP FOR ME.
EACH OF THEM TOOK A THING.
SO PLEASE HAVE A VILLAGE.
NOT TRYING TO DO EVERYTHING BY
YOURSELF AND KNOW WHO YOU CAN
CALL IN YOUR VILLAGE.
MY SISTER DIED FROM MS ON
JULY 17th OF 2011 AND FIVE
YEARS LATER MY HOUSE HUSBAND
DIED ON THE SAME DAY.
THIS IS A GPS FOR THE SHOE.
MY MOTHER KEPT RUNNING SO THE
SECOND TIME I HAD TO PUT A GPS
IN HER SHOE.
INVESTIGATE WHAT YOU'RE GOING TO
NEED NEXT.
YOU MIGHT HAVE EVERYTHING THAT
YOU NEED BUT SOMETHING ELSE IS
COMING SO WE PUT THAT THING IN
HER SHOE.
BUT IT WAS AMAZING AND IT TRACKS
YOU TO THE INCH OF WHERE THEY
ARE STANDING.
SO YOU SET IT UP AND IF THEY
CROSSOVER THE THRESHOLD.
AND SHE WENT OUTSIDE AND THEY
HADN'T CALLED TO SAY THEY WERE
GOING OUT FOR ICE CREAM YOUR
PHONE WOULD VIBRATE.
KIND OF PRI PRICE -- PRISE.
BUT I CREPT WELL.
IT MUST HAVE A FABULOUS CELL
PHONE SERVICE.
THIS WAS A HEARTBREAKING THING.
MY MOM'S 92nd BIRTHDAY.
IT WAS SAD.
THAT WAS DURING COVID.
I TURNED 92 IN A QUARANTINE AND
NONE OF YOU ARE INVITED TO MY
PARTY SO SHE IS READING THE CARD
AND I WATCHED THEM EAT CAKE FROM
OUTSIDE.
IF I HAD KNOWN THAT WAS MY MOM'S
LAST BIRTHDAY PROBABLY NOT MUCH
I COULD CHANGE BUT I DID
EVERYTHING I COULD.
SO PLEASE REMEMBER TO HAVE A
PLAN AND A BACK UP PLAN.
LESSON NUMBER TWO.
ALL RIGHT.
LESSON NUMBER THREE ... FOCUS ON
WHAT THEY CAN STILL DO.
AND ALL OF THE SUPPORT GROUPS
THAT I HELP MODERATE, MY MOM
CAN'T DO THIS ANY MORE OR HE
USED TO BE ABLE TO DO THAT.
YOU WILL DRIVE YOURSELF
ABSOLUTELY CRAZY.
COUNTING ALL OF THE THINGS THEY
CAN NO LONGER DO.
I CHOSE TO FLIP THAT AROUND AND
CHOOSE WHAT SHE COULD STILL DO.
ONE OF THE FUNNEST THINGS --
THIS IS FROM MY MOM'S HIGH
SCHOOL YEARBOOK.
SHE IS ON THE RIGHT WITH THE
DARK SWEATER.
THE "NEW YORK TIMES" HAD COME TO
INTERVIEW US AND THEY WANTED TO
SEE MY MOTHER WAY AFTER SHE
FORGOT WHO I WAS.
SHE IS NAMING BECKY AND SUSIE
AND JOANNE.
IF YOU LOOK CAREFULLY THERE IS A
BOY.
SO SHE SKIPS HIM.
THE "NEW YORK TIMES" GUY SAYS
WHO IS THAT?
SHE SAID I DON'T KNOW.
WE WERE NOT FRIENDS.
YOU KNEW THE REST OF THEM BUT
YOU DON'T KNOW HIM.
SHE SAID NO.
I DON'T KNOW WHY HE WANTED TO BE
IN A CLUB WITH ALL GIRLS.
THIS IS SELECTIVE DEMENTIA SO
SHE CLEARLY NEW THE BOY IN THE
BACK BECAUSE THAT BOY IS MY
FATHER.
SO SHE GORE GOT ALL ABOUT BEING
MARRIED AND HAVING KIDS.
AARP SITE.
THEY GIVE NAMES TO ALL OF THEIR
CARE GIVER PROFILES.
THEY NAME ME THE ENTERTAINMENT
DIRECTOR.
BECAUSE I WAS NOT GOING TO TAKE
THAT BLANK SLATE OF DEMENTIA.
I GOT ONE OF THE PICTURE GAMES.
AND FOR HER 90th BIRTHDAY WE
PUBLISHED A COLORING BOOK.
WHO PUBLISHES A COLORING BOOK
BUT THERE WE ARE.
SHE WAS FEISTY.
YOU CAN SEE THE CHAIR LIFT.
BUT SHE WAS LIKE I WANT TO GO UP
BY -- MYSELF.
SO WHEN THEY SENT ME THAT
PICTURE -- WE WERE GETTING READY
TO GO TO A DOCTOR'S APPOINTMENT.
I WAS HAVING A BAD DAY AND I
WATCHED HER PULL HERSELF UP AND
WE NAMED HER WONDER WOMAN.
SHE WAS SUCH A THING AND YOU CAN
SEE HER WRITING HER NAME.
THAT WAS TWO MONTHS BEFORE SHE
DIED.
IT TOOK HER 45 MINUTES BUT SHE
COULD STILL DO IT.
LOOK AT HER FACE.
HOLDING IT UP AND LOOKING AT HER
NAME.
I'M A LEGO FACILITATOR.
THAT IS A LONG STORY.
I MADE HER A LOT OF LEGO PUZZLES
AND SHE WAS MATCHING THEM UP AND
WE HAD A LOT OF FUN.
FOCUS ON WHAT THEY CAN STILL DO.
THIS LAST PIECE I THINK IS SO
INTERESTING AND PEOPLE ALWAYS
ASK ME TO EXPLAIN IT AND WHAT DO
I MEAN BY HAVING NO
EXPECTATIONS.
WHO KNEW OUR JOURNEY WAS GOING
TO BE 16 YEARS?
RIGHT?
SO WHEN I SAY HAVE NO
EXPECTATIONS WHAT DOES THAT
MEAN?
WE HAVE TO PACE OURSELVES
BECAUSE IF YOU DO TOO HIGH WHEN
THINGS GO WELL.
YOU CAN CELEBRATE SOME BUT DON'T
GET WAY TO HIGH OR REALLY TOO
LOW WHEN THINGS GO BAD.
KEEP YOURSELF ON THIS EVEN KEEL.
STAY WITHIN SOME CONFINES.
AND SO YOU CAN IMAGINE WHERE
THIS SLIDE IS GOING.
THE POLICE CAR IS IN FRONT OF
THE GROUP HOME.
SHE RAN OFF.
TIME NUMBER THREE.
AND SHE GOT ABOUT A MILE.
AND ONE OF THE DEADLIEST
HIGHWAYS.
MY MOTHER GOT ACROSS ALL FOUR
LANES WITHOUT GETTING HIT BY A
CAR AND FAMILY FOUND HER.
AND SHE GETS IN THEIR CAR AND
THEY ASK HERITABLE NAME.
SHE KNEW HER NAME.
CAN WE CALL SOMEBODY FOR YOU?
I DON'T KNOW.
SO THEY GAVE HER SOME WATER AND
A COOKIE AND FOR THE FIRST TIME
IN FIVE YEARS.
MY MOTHER SAYS LORETTA.
WHO IS LORETTA.
I DON'T KNOW.
THE YOUNG GIRL WHO WAS WITH HER
MOM SHE GOOGLES LORETTA IN
MARYLAND AND LOOK AT WHAT SHE
GETS.
THIS IS THE WASHINGTON POST
ARTICLE.
THAT IS THEM RIGHT THERE.
SO MY WHOLE NAME IS ON THERE.
SO SHE SENDS ME A FACEBOOK
MESSAGE.
I THINK I'VE GOT YOUR MAMA.
WHO KNEW YOU COULD GET YOUR
MAMMA BACK ON FACEBOOK?
SO WE JUMPED AROUND AND THAT WAS
THE LAST TIME SHE RANA WAY.
IF I TOLD YOU THIS WAS A *
LIFETIME MOVIE YOU WOULD SAY I
MADE IT UP.
BUT THAT IS WHY I HAVE NO
EXPECTATIONS.
I HAD LOST MY MOTHER ONCE OR
TWICE IN WALMART.
IF YOU TURNED YOUR HEAD MY
MOTHER WAS SO FAST SHE WOULD
DASH OFF.
PACE YOURSELF.
SO SHE IS.
ICE CREAM WAS HER FAVORITE FOOD.
AND WE NAMED HER WONDER WOMAN
BECAUSE IN MARCH 2021 THEY TOLD
ME SHE HAD DAYS TO LIVE.
SHE WAS STILL HERE FOR MOTHER'S
DAY SO WE NAMED HER WONDER
WOMAN.
SHE LIVED 10 MONTHS SO I WAS SO
PROUD OF THAT.
THIS IS THE DAY SHE DIED.
WE PUT THOSE WONDER WOMAN SOCKS
ON HER.
SHE EARNED THOSE SOCKS AND SHE
WAS THE BEST MOM EVER SO IT WAS
ABOUT PACING OURSELVES TO THE
END BUT IT WAS AMAZING.
SO WHAT I REALLY WANT TO LEAVE
YOU WITH AND I HOPE YOU ENJOYED
OUR FAMILY STORY.
WE WENT FROM A DESPAIR TO
RESILIENCE TO MAKING THE MOST OF
EVERY DAY WE HAVE.
NEVER FORGET YOU'VE GOT THIS.
THANK YOU SO MUCH.
>>THANK YOU, SO MUCH, LORETTA.
NEXT WE'RE GOING TO HEAR FROM
DR. ZHOU.
>>HI, EVERYONE.
IT'S MY GREAT HONOR TO JOIN THE
GREAT PANEL TODAY AND MEET YOU
ALL.
THANK YOU LORETTA FOR SHARING
YOUR EXPERIENCES AND GIVING US A
GREAT DEMONSTRATION.
AND TODAY I WOULD LIKE TO
INTRODUCE OUR RESEARCH TEAMS.
DURING THE LAST SEVEN YEARS AGO.
WHAT RESILIENCE MEANS FOR THE
DEMENTIA CARE PARTNERS AND HOW
WE SHOULD DEFINE AND MEASURE IT.
I'VE LEARNED SO MUCH WITH THE
CARE PARTNERS I'VE WORKED WITH
AND I CONTINUE LEARNING FROM
THEM AND I WOULD LIKE TO SHARE
MY MESSAGE AS WELL.
I HAVE NO COMMERCIAL
RELATIONSHIPS TO DISCLOSE AND
THIS IS THE MEMBERS OF THE OUR
RESILIENCE TEAM.
SO FIRST I WANT TO TALK ABOUT
WHY OUR TEAM STARTED TO FOCUS ON
RESILIENCE FOR THE DEMENTIA CARE
PARTNERS.
WE'VE HEARD A LOT ABOUT HOW MANY
CHALLENGES THEY HAVE TO HANDLE
EVERY DAY.
THEY'VE PROVIDED SO MUCH: THEY
HAVE PROVIDED DIRECT CARE AND
HEALTH MANAGEMENT FOR PEOPLE
LIVING WITH DEMENTIA.
THESE EFFORTS CAN MAKE A
POSITIVE IMPACT.
HOWEVER, THERE ARE MANY STUDIES
SHOWING THAT CAREGIVING CAN BE
VERY TAXING AND MIGHT AFFECT THE
HEALTH AND WELL-BEING OF THE
CARE PARTNER.
PEOPLE LIVING WITH DEMENTIA
SUFFER AT THE SAME TIME.
CURRENT INTERVENTIONS FOR
DEMENTIA CARE PARTNER MANY FOCUS
ON THE STRESS OR THE BURDEN.
HOWEVER THERE ARE LIMITATIONS.
THEY OFTEN REACH A CRISIS POINT.
THE SERVICES TEND TO BE
SHORT-TERM RELIEF SUCH AS RESPID
CARE, COUNSELING AND THIS
APPROACH HAS LIMITED EFFECTS IN
PREVENTING OR RELIEVING THIS
LONG-TERM BURDEN.
THERE IS A GROWING INTEREST IN
DEVELOPING INTERVENTIONS.
AND WHILE RESILIENCE.
A FOCUS ON THE STRENGTHS AND AND
THE ABILITY FOR THEM TO RECOVER
FROM STRESSFUL SITUATION.
THERE ARE MANY STUDIES THAT SHOW
THAT RESILIENCE HAS STRONG
PROTECTIVE FACTORS.
RESILIENCE COULD BE A NEW
INTERVENTION TARGET TO
DEVELOPING SUPPORT.
IN THAT WAY WE MAY BE ABLE TO
PREVENT THEM FROM VARIOUS
NEGATIVE IMPACT OF CAREGIVING
RATHER THAN ADDRESSING THEM WHEN
IT'S TOO LATE.
WE FIRST NEED TO UNDERSTAND WHAT
IT MEANS IN A CONTEXT OF THE
CAREGIVING.
THERE ARE MANY MEASURES THAT CAN
INDICATE STRESS AND BURDEN.
THE LACK OF RESILIENCE MEASURED
AND VALIDATED.
ALTHOUGH -- THIS WAS A CONSTRUCT
SUCH AS BEING PERSEVERANT.
BUT IT MAY REQUIRE DIFFERENT
THINGS.
SOME CAREGIVERS TOLD ME THEY
WERE FOCUSED ONLY ON PROBLEM
SOLVING AND THAT CAN MAKE THEM
BURN OUT AND MAKE IT HARDER TO
ASK OR RECEIVE SUPPORT.
SO WHAT RESILIENCE MEANS IS A
CONTEXT OF THE DEMENTIA
CAREGIVING.
THIS IS THE FIRST QUESTION OUR
TEAM TRIED TO ADDRESS.
SO TO BETTER UNDERSTAND HOW TO
CONCEPTUALIZE AND MEASURE OUR
TEAM HAS CONDUCTED A SCOPING
REVIEW AND PROPOSED A UNIFYING
MODEL TO RESILIENCE.
INSTEAD OF THINKING ABOUT THE
INDIVIDUAL TRAITS WE THINK ABOUT
IT AS A PROCESS THROUGH WHICH
THE CARE PARTNER UTILIZE THIS
AND ACHIEVE RESILIENCE OUTCOME.
THIS OUTCOME -- IS RELATED TO
ADVERSITY AND ALSO PERSONAL
GROWTH AND DEVELOPMENT.
HOW CAN WE DEVELOP
INTERVENTIONS?
THIS PROCESS IS ESPECIALLY
CRITICAL AS IT IS MULTIPLABLE.
AND PROMOTING POSITIVE OUTCOMES.
TO CAPTURE THIS PROCESS ONE
POSSIBLE WAY IS TO CAPTURE WHAT
I DO.
THE CARE GIVER'S BEHAVIOR CAN BE
USED AS A GOOD TARGET FOR
INTERVENTION.
HOWEVER WE DID NOT KNOW WHAT
BEHAVIOR CAN INDICATE RESILIENCE
IN THE FIRST PLACE.
SO IDENTIFY THE INDICATORS WE
CONDUCTED A LITERATURE REVIEW
TRYING TO FIGURE OUT.
THERE ARE FOUR TYPES.
FIRST IS WE FOUND THE RESILIENCE
MEANS CARE PARTNER TAKES
APPROPRIATE ACTION.
SOMETIMES YOU FOCUS ON SOLVING
THE PROBLEM BUT OTHER TIMES IT
IS BETTER TO DISTANCE THEMSELVES
FROM THOSE PROBLEMS WHEN IT IS
OVERWHELMING.
HELP IS IMPORTANT.
ACCESSING OR ACCEPTING SUPPORT
FROM OTHERS.
SOMETIMES IT'S HARD FOR THEM TO
DO IT.
BESIDES THAT WE FOUND IT
REQUIRED THEM TO ADOPT BEHAVIOR
TO MAINTAIN OR IMPROVE THEIR OWN
HEALTH AND WELL-BEING.
THROUGH CONNECTING WITH OTHERS
INCLUDING MORE SELF-CARE
ACTIVITIES, DEVELOPING AND
MAINTAINING MEANINGFUL SOCIAL
RELATIONSHIPS AND PARTICIPATING
IN SPIRITUAL ACTIVITIES AND
THOSE ARE VERY IMPORTANT FOR THE
HEALTH AND WELL-BEING.
IN THE END WE FOUND LEARNING
RELATED BEHAVIORS ARE
FUNDAMENTAL FOR CARE PARTNERS.
THIS IS THE FIRST THING LORETTA
MENTIONED.
NOT ONLY TO LEARN FROM OTHERS
BUT THEY HAVE TO REFLECT ON
THEIR OWN EXPERIENCES AND
APPLYING THEM IN CAREGIVING AND
SEE HOW IT WORKS.
I'M VERY EXCITED ABOUT THIS
INITIAL FRAMEWORK BECAUSE IT CAN
INFORM THE DEVELOPMENT OF
MEASURES, RESEARCH AND
INTERVENTION AND POLICIES FOR
THE DEMENTIA CARE PARTNER.
HOWEVER, THERE ARE LIMITATIONS.
SO NONE OF THE REVIEW STUDIES
HAVE EXAMINED THEIR BEHAVIORS SO
WE ARE LIKELY TO MISS SOME.
WE CONDUCTED ANOTHER STUDY TO
VALIDATE AND EXPAND THIS
BEHAVIOR FRAMEWORK.
SO WE INTERVIEWED 27 CARE
PARTNERS AND ASKED THEM WHAT
THEY'VE DONE TO DEAL WITH THE
CHALLENGES.
AND WHAT BEHAVIOR THEY FOUND
HELPFUL.
SO THIS IS A CRITICAL TIME
POINT.
THEY PROVIDE A LOT OF USEFUL
INFORMATION AND INSIGHTS THAT I
WOULD LIKE TO SHARE WITH YOU.
WE VALIDATED AND EXPANDED OUR
REGIONAL FRAMEWORK.
WE DID MISS SOMETHING IMPORTANT
AND I WOULD LIKE TO POINT THEM
OUT TO YOU.
FIRST WE FOUND A NEW DOMAIN OF
BEHAVIOR.
WE MISSED IT IN THE BEGINNING.
CALLED COMPASSION RELATED
BEHAVIOR.
THEY USED TO RESPOND TO --
RELIEVE OTHER'S SUFFERING.
A LOT OF TIMES THOSE BEHAVIORS
ARE VIEWED AS BEING HARMFUL FOR
CAREGIVERS.
BUT CARE GIVER TOLD ME NO.
BE ABLE TO SACRIFICE THEMSELVES
AND SHOWING LOVE AND COMMITMENT
AND CARING FOR THE PEOPLE WITH
DEMENTIA AND MANY OTHER FAMILIES
IS NOT ONLY CRITICAL FOR THE
WELL-BEING OF THE PEOPLE LIVING
WITH DEMENTIA BUT ALSO PROVIDE
GREAT SATISFACTION FOR
THEMSELVES.
THEY FEEL THEY ARE CAPABLE OF
TAKING CARE OF PEOPLE LIVING
WITH DEMENTIA AND OTHER FAMILY
MEMBERS THAT SUFFER AS WELL.
WE ALSO FOUND THAT THEY HAVE
GREAT WISDOM.
BESIDES SOLVING OR AVOIDING THE
PROBLEMS IT IS VERY IMPORTANT TO
BE ABLE TO STOP AND WATCH,
OBSERVE HOW THE PROBLEMATIC
SITUATION EVOLVED AND CHANGED
AND THEN MAKE DECISIONS.
IT IS IMPORTANT TO ACCEPT THINGS
THAT ARE OUT OF CONTROL AND MOVE
ON TO OTHER THINGS THAT THEY ARE
ABLE TO IMPROVE.
THIS NONJUDGMENTAL -- EXPERIENCE
IS SHOWING TO BE CRITICAL FOR
CARE PARTNERS TO MAKE THE RIGHT
DECISIONS FOR THEMSELVES AND THE
PEOPLE THAT THEY CARE FOR.
IN THE END WE FOUND THAT
RESILIENT CAR PARTNERS KNOW WHAT
THEY WANT AND DON'T WANT.
SOMETIMES IT CAN BE DISTURBING,
BURDENSOME AND INTRUSIVE.
CARE PARTNERS HAVE TO BE ABLE TO
SAY NO IN THESE SITUATIONS.
THEY ARE COMPETENT AND
KNOWLEDGEABLE EXPERTS AND THEN
RECOGNIZE THEIR RIGHT TO CHOOSE
OR REJECT UNWANTED OR INTRUSIVE
HELP.
ALSO VIEWED AS OPPORTUNITY FOR
OTHER FAMILY AND FRIENDS AND
CARE PROVIDERS TO REASSESS WHAT
IS NEEDED.
I WOULD LIKE TO SHARE AN EXAMPLE
FROM AN INTERVIEW ABOUT A
RESILIENT CARE PARTNER AND JASON
IS A 20-YEAR-OLD BLACK MAN WHO
HAS BEEN CARING FOR HIS FATHER
FOR FOUR YEARS.
HE WAS NOT DIAGNOSED OR WAS NOT
SHARED WITH JASON UNTIL THE
HEALTH CRISIS.
THE MAIN CHALLENGES IS FIRST
NAVIGATING THE HEALTH CARE
SYSTEM.
THEY HAVE TO ACCESS THE SERVICES
FROM LONG DISTANCE AND HE
STRUGGLED WITH HOW TO
COMMUNICATE.
HE ALSO FACED THE CHALLENGES OF
MANAGING HIS OWN FEARS.
LET'S SEE WHAT JASON HAS DONE.
FIRST HE EMPHASIZED HE DECIDED
TO PUT HIS DAD'S CARE OVER
EVERYTHING ELSE.
HE TRIED TO BE STRONG NOT ONLY
FOR HIMSELF AND HIS DAD BUT ALSO
FOR THE REST OF THE FAMILY WHO
ARE ALSO VERY SAD AND WORRIED.
HE TRIED TO SOLVE THE PROBLEM BY
LOOKING FOR A CLOSER SERVICE
PROVIDER.
HE ASKED FOR HELP IN TRYING TO
LEARN HOW TO CARE FOR HIS
FATHER.
HE ALSO RECEIVED HELP OFFERED BY
OTHER FAMILY MEMBERS.
HE FELT REALLY OVERWHELMED.
HE WOULD GO OUT FOR A WALK AND
HE PRAYED AND TALKED TO GOD
ABOUT HIS FEAR.
THROUGH TALKING WITH SERVICE
PROVIDERS HE LEARNED HOW TO
MONITOR AND PREVENT UTI.
HE ALSO REFLECTED ON HOW HIS DAD
TAUGHT HIM ABOUT LIFE AND FIND
PEACE.
JASON SHOWED HOW THESE BEHAVIORS
-- MADE HIM FEEL GROWN UP.
HE FELT HE WAS ABLE TO TAKE CARE
OF HIS FAMILY AND HE FELT HE WAS
A LESS SELFISH PERSON.
NOT EVERYONE WAS LIKE JASON.
WE DEFINED CARE PARTNERS THAT
ONLY ADOPTED SOME BEHAVIORS AND
NOT OTHERS.
THEREFORE DIFFERENT CARE
PARTNERS MAY REQUIRE DIFFERENT
RESILIENCY -- OVER-ALL OUR
FINDINGS PROVIDE A COMPREHENSIVE
MODEL FOR BEST MEASURE.
AND THE MEASURE CAN GUIDE FUTURE
RESEARCH FOR US TO EXPLORE
FACTORS SHAPING BEHAVIORS.
WE HAVE WANT TO UNDERSTAND WHO
IS RESILIENT AND WHY AND PEOPLE
FROM DIFFERENT CULTURE
BACKGROUNDS AND DIFFERENT
SOCIOECONOMIC STATUS MAY HAVE
DIFFERENT BEHAVIORS.
THE NEED TO DEVELOP
INTERVENTIONS SUCH AS
MINDFULNESS AND COMPASSION.
ALSO THE IMPORTANCE TO
COLLABORATE WITH A CAR PARTNER
TO CO-DESIGN SUPPORT PROGRAM.
THEY ARE VALUABLE TO THE
PROGRAM.
AND THIS IS THE PREFERENCES FOR
MY PRESENTATION AND THANK YOU
VERY MUCH AND PLEASE REACH OUT
TO ME IF YOU HAVE ANY QUESTIONS
OR FEEDBACK ON OUR WORK.
THANK YOU VERY MUCH.
>>THANK YOU, VERY MUCH.
NEXT WE'LL HEAR FROM DR. COTHRAN
>>THANK YOU FOR THE INVITATION
TO JOIN TODAY'S AMAZING PANEL OF
SPEAKERS.
I'M DELIGHTED TO SPEAK TO YOU
TODAY.
ALTHOUGH WE'RE IN A VIRTUAL
FORMAT I WANT TO ACKNOWLEDGE THE
NATIONAL ALLIANCE FOR CAREGIVING
IS PHYSICALLY HOUSED ON THE
TRADITIONAL LANDS OF THE --
PEOPLE.
WE ARE A MEMBERSHIP BASED
ORGANIZATION ESTABLISHED IN
1996.
FOCUSING ON BUILDING HEALTH,
WEALTH AND EQUITY FOR AMERICA'S
53 MILLION FAMILY CAREGIVERS
ACROSS LIFE-SPAN AND CONDITION.
WE'RE COMPRISED OF MORE THAN 60
ORGANIZATIONS AND A NETWORK OF
MORE THAN 80 STATE AND LOCAL
CAREGIVING COLLISIONS AND
CAREGIVING ADVOCATES.
WE HAVE FOUR CORE STRATEGIES.
OUR RESEARCH STRATEGY THROUGH
YESTERDAY CALL, TRANSFORMATIVE
ORIGINAL RESEARCH, AND LEADING A
NATIONAL NET WORK.
RESILIENCE TODAY IS THE CAPACITY
TO ADAPT AND PERSEVERE IN THE
FACE OF STRESS AND WITH THIS
DEFINITION I WANT TO HIGHLIGHT
SIX ATTRIBUTES.
FOR THE FIRST ATTRIBUTE,
REFRAMING.
DESPITE MANY CHALLENGES A SENSE
OF PURPOSE, SATISFACTION AND
OPPORTUNITY TO RESOLVE CONFLICT
AND STRENGTHEN RELATIONSHIPS.
A WAY OF GIVING BACK AND
ACKNOWLEDGE SPECIAL MOMENTS OF
BREAKTHROUGH RECOGNITION OR
LAUGHTER.
DRAWING FROM OUR 2017 REPORT THE
NEXT ATTRIBUTE IS ASKING FOR AND
ACCEPTING HELP.
WHEN WE COMPARE 62% OF DEMENTIA
CAREGIVERS SHARE CAREGIVING.
THEY ARE NOT THE SOLE CARE
GIVER.
45% OF DEMENTIA CAREGIVERS
RECEIVE HELP AND THEY ARE TWICE
AS LIKELY TO USE RESPID.
ADDITIONALLY 37% OF DEMENTIA
CAREGIVERS ARE REQUESTING
FINANCIAL HELP.
THE THIRD ATTRIBUTE USING
RESOURCES 45% OF DEMENTIA
CAREGIVERS ARE MODIFYING THEIR
HOMES.
AND 32% ARE USING TRANSPORTATION
SERVICES FOR THEIR CARE
RECIPIENT.
FOR THE FOURTH ATTRIBUTE.
WORKING.
ALTHOUGH INDIVIDUAL REASONS WILL
VARY SIX IN 10 CAREGIVERS ARE
EMPLOYED AND 57% ARE FULL-TIME.
ALONG THE LINES OF WORKING BUT
REPRESENTING THE 5th ATTRIBUTE
THEY ARE SPEAKING UP, 70% OF
MAKING THEIR SUPERVISORS AWARE
OF THEIR CAREGIVING ROLE.
44% ARE ALSO SPEAKING UP WHEN
BEING ASKED ABOUT WHAT THEY NEED
TO PROVIDE CARE FOR THEIR CARE
RECIPIENT.
THE FINAL ATTRIBUTE THAT I SEE
IS PLANNING FOR THE FUTURE.
WITH 56% OF DEMENTIA CAREGIVERS
HAVE BEEN FINANCES AND LIVING
ARRANGEMENTS IN PLACE.
NOW WHILE I'VE HIGHLIGHTED SIX
ATTRIBUTES THERE ARE TWO
IMPORTANT RESEARCH CHALLENGES TO
HIGHLIGHT.
ONE IS THAT THERE IS LIMITED
OBJECTIVE DATA ON CARE GIVER
RESILIENCE AND THE SECOND IS
THAT PROXY MEASURES ARE THE
CLOSEST ALTERNATIVE.
FROM A RESEARCH PERSPECTIVE
WITHOUT RESILIENCE MEASURES OR
DATA WE DON'T HAVE AN ACCURATE
PICTURE OF CARE GIVER
RESILIENCE.
WE DON'T KNOW WHAT WE DON'T
KNOW.
AND FURTHER RESEARCH IS NEEDED
AND THIS IS WHERE THE WORK OF
DR. ZHOU AND HER TEAM ARE
HELPING TO FILL THE GAP.
I DO HAVE A FEW WORDS OF
CAUTION.
FIRST WHILE STRESS IS A NORMAL
FUNCTION OF LIFE WE MUST BE
CAREFUL NOT TO OVERLOOK THE
LONG-TERM NATURE OF DEMENTIA
CAREGIVING AND THE PHYSICAL AND
MENTAL HEALTH CONSEQUENCES A
ASSOCIATED WITH CHRONIC STRESS.
SECOND, GIVEN THE IMPACT PLUS
THE LIMITED DioGUARDI GRAPHIC
ACCESSIBILITY OF RESEARCH
CENTERS DEMENTIA CAREGIVING DOES
NOT AFFECT EVERYONE EQUALLY.
FOR EXAMPLE, ALMOST ONE THIRD OF
CAREGIVERS IN OUR REPORT SAY IT
IS DIFFICULT TO FIND AFFORDABLE
SERVICES WHERE SOCIAL
DETERMINANTS OF HEALTH ARE ONE
ASPECT THAT PLAY A CRITICAL ROLE
IN THE CAREGIVING CONTEXT.
CAREGIVERS WHO ARE WOMEN,
LGBTQ+, BLACK, INDIGENOUS OR
PEOPLE OF COLOR PLUS THE WIDER
DIVERSITY WITHIN ALL OF THESE
COMMUNITIES -- EXTENDS THE
NUANCE COMPLEXITY AND
INEQUALITY.
FINALLY THE FRAMING OF
RESILIENCE ESPECIALLY IN THE
CONTEXT OF CAREGIVING
CONTRIBUTES TO THE INVISIBLE,
UNDER VALUED AND UNSUPPORTED
LAYER OF CAREGIVERS IN OUR
SOCIETY.
EVEN WHILE CELEBRATING WE CANNOT
NORMALIZE THE WORK CAREGIVERS
UPHOLD IN OUR SOCIETY AND IGNORE
THE NECESSARY OF ADEQUATE
SUPPORT.
DEMENTIA CAREGIVERS ARE MAKING A
WAY IN STRESSFUL AND CHALLENGING
CIRCUMSTANCES.
CAREGIVERS NEED PAID FAMILY
MEDICAL LEAVE -- THEY NEED
REFUNDABLE TAX CREDITS AND
SOCIAL SECURITY CREDITS ADDED TO
A PERSON'S CAREER EARNINGS.
IN ADDITION EQUITABLE EMPLOYMENT
POLICIES AND PROTECTIONS ARE
NEEDED GIVEN THAT OUR DATA
HIGHLIGHTS THAT THEY HAVE
SLIGHTLY LESS WORKPLACE BENEF
BENEFITS.
CAREGIVERS OFTEN RELY ON THE
DIRECT CARE WORKFORCE INCLUDING
RETENTION AND TRAINING --
ABSOLUTELY CRITICAL.
WE MUST RECOGNIZE AND INCLUDE
CAREGIVERS AS INTEGRAL MEMBERS
OF THE HEALTH CARE TEAM THAT
THEY ARE.
USING OUR DATA WHEN 56% ARE NOT
BEING ASKED WHAT THEY NEED TO
PROVIDE CARE FOR THEIR CARE
RECIPIENT THIS IS A MISSED
OPPORTUNITY TO ENSURE CONTINUITY
OF CARE AND THE POSITIVE
OUTCOMES THAT ARE DESIRED.
SO AS I WRAP UP THIS IS OUR
REPORT THAT I USED TO GUIDE MY
DATA THAT I PRESENTED AND SHARED
WITH YOU TODAY.
IT CAN BE FOUND ON OUR WEB SIZE
WWW.CAREGIVING.ORG IF YOU ARE
INTERESTED IN READING FURTHER.
THANK YOU.
AND HERE IS MY CONTACT
INFORMATION AND OUR WEBSITE
AGAIN.
>>THANK YOU VERY MUCH, FAWN.
NEXT WE'RE GOING TO HEAR FROM
DIANA SHULLA COSE.
>>THANK YOU, ERWIN, ELIZABETH
AND TEAM -- FOR INVITING ME TO
SHARE PIECES OF MY OWN PERSONAL
STORY AND TO SHARE LIGHT ON
LORENZO'S HOUSE AND ALSO HONORED
TO BE ON THE PANEL.
THE SORT OF THEME OR PHILOSOPHY
OR PRACTICE THAT I WILL BE
SHINING LIGHT ON IS THIS IDEA OF
SHIFTING OUR MINDSET AS A CARE
PARTNER AND THE IDEA CAN SHIFT
OUR OWN NARRATIVE OF HOW WE LIVE
HOW WE WALK AS A FAMILY WITH
YOUNGER ON SET DEMENTIA.
SO I GOT LUCKY WITH LOVE.
I FELL MADLY IN LOVE WITH
LORENZO WHO IS HERE WITH OUR TWO
SONS.
THIS IS A COUPLE OF YEARS BEFORE
WHAT I CALL OUR FAMILY
DIAGNOSES.
WHEN LO -- LORENZO WAS DIAGNOSEE
WORE THIS NEW IDENTITY AS A
YOUNGER FAMILY WALKING WITH
DEMENTIA AND WE LEARNED QUICKLY
THAT THERE ARE REALLY SO FEW
PLACES FOR US TO LAND AND FEEL
COMMUNITY.
SO MY RESPONSE TO THIS WAS THAT
MAYBE I NEED TO FIRST FIGURE OUT
HOW I'M GOING TO RESPOND IN OUR
HOME AS A MOMMAS A WIFE AND ALSO
AS A WOMAN WHO WAS A FULL-TIME
CAREER PERSON AND BRED WINNER
AND * I ALSO THOUGHT MAYBE SINCE
THERE IS SO LITTLE IN THIS SPACE
MAYBE WE COULD BUILD SOMETHING,
A PLACE WHERE FAMILIES LIKE MINE
WHO WERE YOUNGER WALK WITH
DEMENTIA COULD GO.
SO THE IDEAS ARE THE RESPONSE IS
TWOFOLD.
HOW WE WALKED IN OUR HOME AND
THE LOVE THAT -- IS AT LORENZO'S
HOUSE.
I WILL OPEN BY SAYING THAT THIS
IS LORENZO AND DIANA'S PERSONAL
JOURNEY AND WE KNOW THAT THIS
EXPERIENCE BRINGS SO MUCH
SUFFERING AND DEVASTATION AND
DARKNESS AND WE KNOW THIS AND
I'M GRATEFUL FOR THE OPPORTUNITY
WHEN ERIN SAID LET'S SHED LIGHT
ON WHAT WE CAN DO.
AND WHEN I THOUGHT ABOUT OUR TOP
FIVE ... GRATITUDE IS SELF-CARE.
AS A CARE PARTNER WAKING UP
EVERY DAY I WAS ALWAYS LOOKING
FOR BITS OF LIGHT.
HOW I SET MY CUP OF COFFEE IN
THE MORNING.
HOW I WOULD SIT ON THE TERRACE
IN THE MORNING AND THAT WAS MY
MOMENT OF RESPID.
AND WE TALK ABOUT A WEEKEND AWAY
OR A MASSAGE THAT WAS NOT WHAT I
WAS LOOKING FOR.
I WAS LOOKING FOR THE SWEET TEXT
FROM A FRIEND OR THE MOMENTS OF
BEING GRATEFUL FOR ANYTHING AND
EVERYTHING AND THOSE HELPED TO
SUSTAIN ME.
GRATITUDE IS SELF-CARE.
THE NEXT IS MUSIC CHANGES
EVERYTHING.
FOR JUSTIN AND LUCAS -- OUR SONS
WERE 11 AND 13 UPON DIAGNOSIS.
MUSIC CHANGES EVERYTHING.
WHEN MY HUSBAND WAS NOT
EXPERIENCING JOY TURNING ON
EVERYONE FROM STEVIE WONDER TO
ELTON JOHN TO JAY-Z THEY WERE
ALL CAREGIVERS.
MUSIC IS KING IN OUR FAMILY.
CANNOT UNDERSTAND ESTIMATE HOW
IMPORTANT INVESTING IN ALEXIS
WAS FOR OUR FAMILY.
THE NEXT PIECE IS ABOUT METHODS
OF LOVE.
WE FELL IN LOVE WITH A PERSON
AND THEN THIS BRAIN CONDITION
AND THIS BRAIN CHANGE CHANGES
HIM.
THE IDEAS OF HOW THAT LOVE LOOKS
CHANGES.
AND SOMETHING LORETTA SAID IS
WHAT I THINK THIS NEW METHODS OF
LOVE IS ABOUT.
WE CAN SHOW OUR LOVE THROUGH
LEARNING EVERYTHING ABOUT THIS
CONDITION.
WE CAN SHOW OUR LOVE BY SEEING
BEHAVIORS AND EXPERIENCING
BEHAVIORS AND SEEKING OUT THE
RESOURCES TO RESPOND TO THESE
BEHAVIORS WITH AS MUCH PATIENCES
AND LOVE AND INFORMATION AS
POSSIBLE.
SO WHEN WE THINK ABOUT
RETHINKING HOW LOVE LOOKS
BECAUSE IT DOES LOOK DIFFERENT
IT'S NOT GONE.
IT'S JUST SHIFTED.
AND I THINK AGAIN THAT WHOLE
CONCEPT OF THE SHIFT, THE
NARRATIVE LAYS IN -- IN THIS
CASE MY SPOUSE, HOW ARE WE GOING
TO UNCOVER LOVE TODAY AND
SHIFTING HOW WE LOOK AT LOVE.
IT'S STILL THERE.
IT'S A LIVE IF WE'RE ABLE TO
FIND THE GRATITUDE, PULL BACK
THE SHADE AND SEE THE BITS OF
LIGHT AND THE ONE KEY DRIVING
PIECE IS UNDERSTANDING AS MUCH
AS WE CAN WHAT OUR LOVED ONE IS
EXPERIENCING AND HOW TO RESPOND
TO IT WITH LOVE.
ANOTHER BIG PIECE WAS RETHINKING
OUR HOME DESIGN.
THIS WAS -- I OFTEN WOULD SAY
THAT OUR HOME TURNED INTO
MUSEUM.
I'VE GOT A BISTRO ON THE TABLE.
WE WENT EVERY MORNING FOR
BREAKFAST.
THE TV WOULD BE ON DURING THE
DAY BECAUSE MY HUSBAND LOVED TO
BE INTERVIEWED AND THAT BECAME
AN IMPORTANT PART OF HIS
EXPERIENCE THAT HE WAS ENGAGING
WITH SOME KIND OF A NEWS REPORT
THAT WAS ON THE TV.
WE SWAPPED OUT OUR DINING ROOM
TABLE AND PUT A POOL TABLE IN
THE HOME.
WE TRIED TO RETHINK HOW THE
STRUCTURE AND THE DESIGN OF OUR
HOME LOOKED SO THIS IS A PLACE
THAT MET LORENZO'S NEEDS AND
ALSO A PLACE THAT THE FAMILY
COULD ALSO HAVE A SENSE OF
OWNERSHIP IN AS WELL SO BRINGING
MY SONS INTO THE EXPERIENCE.
THIS IS NOW A NEW PART OF OUR
IDENTITY AND GETTING THE FAMILY
TO BE PART OF THAT.
I SAY THAT THIS IS A DIAGNOSIS
OF THE FAMILY.
RIGHT?
AND EVERYONE INVOLVED IN THAT
AND ALWAYS AT DIFFERENT DEGREES.
BUT EVERYTHING TOGETHER AND THE
LAST ONE WAS THE POWER OF
CONNECTION AND CONNECTING WITH
GOOD FRIENDS, BEAUTIFUL, FAMILY
WHO UNDERSTAND BEAUTIFUL.
WHO IS ABLE TO UNDERSTAND YOUR
JOURNEY.
AND THAT IS THE PERFECT SEGUE TO
LORENZO'S HOUSE.
WHY LORENZO'S HOUSE.
THIS SHIFT FROM -- TWO AND A
HALF YEARS AGO I FOUNDED
LORENZO'S HOUSE IN THIS BEDROOM
-- THIS WAS MY SON'S BEDROOM.
AND THERE WAS A REASON WHY.
IS THAT YOUNGER FAMILIES LIVING
WITH DEMENTIA YOUNGER FAMILIES
ARE UNSEEN AND MISUNDERSTOOD AND
UNDER RESOURCED.
THE STIGMA IS THAT IT'S AN OLDER
PERSON'S DISEASE.
IT IS NOT.
AND THAT WAS A STUDY ACROSS BLUE
CROSS BLUE SHIELD IN 2013.
WHEN THEY DON'T HAVE IT -- --
YOUNGER IS BEFORE THE AGE OF 65
THERE ARE A UNIQUE SET OF FAMILY
CHALLENGES.
FORCED TO LEAVE CAREERS EARLY.
INCOME LOSS.
RAISING YOUNGER CHILDREN.
BECOMING A SINGLE PARENT.
THERE ARE UNIQUE CHALLENGES TO
THE PROFILE OF THE YOUNGER
FAMILY.
OUR MODEL, WE ARE FOUNDED IN
CHICAGO BUT WE ARE AN
INTERNATIONAL ORGANIZATION IN
TWO AND A HALF YEARS.
WE'RE FOCUSED ON YOUNGER
FAMILIES LIVING WITH ANY FORM OF
DEMENTIA.
OUR TAG LINE IS WE BRING LIGHT.
A LABOR OF LOVE.
OVER 400 FAMILIES ARE RECEIVING
OUR SERVICES.
OUR CAR PARTNER SPACES IS FOR
THE PRIMARY CARE PARTNER.
OUR YOUTH INITIATIVES AND MEMORY
ACADEMY.
FOR THOSE LIVING WITH THE
DIAGNOSIS.
I'M GOING TO SHINE LIGHT ON OUR
YOUTH INITIATIVES.
BECAUSE THIS IS THE WAY THAT
WE'VE BEEN STARTING TO BUILD OUT
OUR ORGANIZATION IS THROUGH THE
LENS OF OUR YOUTH.
THIS IS GOING TO BE A VIDEO CLIP
FROM LUCAS.
WE PROVIDE SAFE BRAVE SPACES FOR
OUR YOUTH TO CONNECT WITH OTHER
YOUTH WHO ARE WALKING THE
SIMILAR JOURNEY.
THERE ARE, WE JUST HAD OUR
FAMILY NIGHT IN CHICAGO.
WE HAD OVER 100 YOUTH, YOUNG
PEOPLE AND THEIR PARENTS AT
FAMILY NIGHT ON FRIDAY NIGHT AND
IT WAS -- THERE WAS SO MUCH LOVE
IN THE ROOM.
IT WAS ELECTRIFYING BECAUSE WE
DON'T GET TO SEE EACH OTHER.
WE'RE A SIZEABLE NICHD GROUP AND
WHEN YOU CAN SEE YOUNG PEOPLE
HAVING THIS BROTHERHOOD AND
SISTERS HOOD BECAUSE THEY HAVE
FOUND SOMEBODY WHO GETS THEM IT
IS THE MOST PROVOCATIVE AND
EMPOWERING THING.
WE'RE SHARING THIS WITH YOU AND
HE IS ONE VOICE OF MANY WHO
FEELS SAFE ENOUGH TO SHARE
PIECES OF OUR STORY.
OUR YOUTH HAVE IT THE HARDEST
AND YET THEIR VOICE IS THE
SOFTEST AND KEEP IN MIND THAT
EVERY YOUTH IS A YOUTH WHO'S
WALKING WITH A PARENT DIAGNOSED.
A MOM OR DAD OR THE GUARDIAN WHO
HAS RAISED THEM DIAGNOSED.
SO THIS IS LUCAS AND THANK YOU
FOR LISTENING.
>>WHEN MY DAD WAS DIAGNOSED
WITH YOUNGER ONSET ALZHEIMER'S I
WAS ELEVEN.
I DIDN'T REALLY UNDERSTAND SO I
TOOK TIME FOR GRANTED.
I HAD NO IDEA OF THE DAMAGE IT
WAS GOING TO CAUSAL OF US.
MY MOM KEPT US STRONG BUT ON THE
INSIDE WAS SAD.
ME AND MY BROTHER DID NOT WANT
TO TALK ABOUT IT.
I REMEMBER MY DAD.
HE BECAME QUIET AND LOW SPIRITED
WHEN HE WAS USUALLY PLAYFUL AND
POSITIVE.
AT FIRST IT SEEMED LIKE THINGS
STAYED THE SAME.
MY DAD WAS STILL DRIVING ME TO
PRACTICE AND WALKED ME TO SCHOOL
AND ASKED ME A BUNCH OF
QUESTIONS BUT AT THE END OF MY
7th GRADE YEAR I SAW A BIG
DIFFERENCE.
HE TOOK ME TO HIS CHILDHOOD
HOME.
WE WOULD PLAY BOARD GAMES AS A
FAMILY H HE WOULD GET CONFUSED.
WE DON'T PLAY ANY MORE.
HE WOULD ACCUSE MY BIG BROTHER
OF TAKING HIS CLIENTS.
WE STARTED TO STAY HOME.
STOPPED HAVING PEOPLE OVER.
LIFE BECAME BORING.
I FEEL ANNOYED AND EMBARRASSED.
MY DAD IS SICK AND CAN'T HELP
IT.
BUT ONE OF THE THINGS I SUFFER
WITH IS THAT I'LL REMEMBER HIM
AS SOMEBODY I DIDN'T KNOW.
SOMEBODY THAT I TOOK CARE OF.
I THINK ABOUT HOW HE COULD HAVE
IMPACTED ME AND MADE ME A BETTER
PERSON.
I KNOW IF I KEEP ON THINKING
ABOUT IT WILL BRING ME MORE PAIN
SO I TRY NOT TO.
OTHER YOUNG PEOPLE HAVE A
SIMILAR STORY AND KNOWING THAT
I'M NOT ALONE GIVES ME HOPE.
THIS IS WHY LORENZO'S CAMP IS
GOING TO BE A GOOD THING.
WE ARE EMPATHIZE TOGETHER AND
BUILD RELATIONSHIPS WITH PEOPLE
WHO UNDERSTAND AND SUPPORT EACH
OTHER ALONG THE WAY.
TODAY THINGS ARE BETTER IN MANY
WAYS BECAUSE WE'RE STRONGER AS A
FAMILY.
WE UNDERSTAND HOW TO MANAGE
THINGS AND HAVE SOME FUN AGAIN.
A NOT NORMAL BUT IT'S BETTER.
I'LL TAKE CARE OF MY FAMILY.
TRY TO BE AS NORMAL OF A
TEENAGER AS I CAN AND DEAL WITH
THE DECK I'VE BEEN DEALT.
I'M WILLING TO ACCEPT THINGS.
I KNOW THAT I'LL COME OUT OF
THIS STRONGER AND MOST OF THE
DAYS I THINK MY DAD WOULD BE
PROUD OF ME.
>>NEXT SLIDE, PLEASE.
>>SO JUST TO REFLECT ON LUCAS
AND I DON'T KNOW WHAT WORDS WE
CAN SHARE AFTER HEARING THIS
PIECE.
THERE ARE DOZENS OF KIDS WHO ARE
WALKING THIS JOURNEY WITH THEIR
PARENTS WHO DO NOT HAVE THE
WORDS TO DESCRIBE THE
COMPLEXITIES OF THIS DISEASE THE
LAYERS OF CONFUSION THAT IT CAN
BRING.
AND THE ISOLATION THAT THEY
EXPERIENCE.
BUT WHEN OUR KIDS FIND EACH
OTHER AT THE LIGHT CLUB WHICH IS
A SUPPORT GROUP.
THEY DIDN'T WANT TO CALL IT A
HAVE YOU REPORT GROUP.
IT'S A VIRTUAL HANGOUT ON
WEDNESDAY NIGHTS.
THEY FIND COMMUNITY.
THEY ARE BUILDING AN APPLIANCE.
AND IT IS INCREDIBLY POWERFUL
AND A HEALING PLACE FOR OUR KIDS
AND SO CRITICALLY NEEDED.
OUR YOUTH SUMMIT IS COMING UP.
OUR FIRST YEAR WE HAD 20 YOUTH.
LAST YEAR WE HAD 43 AND THIS
YEAR WE HAVE OVER 80.
AND COUNTING.
AND IT IS ON JUNE 17th.
A DAY WHERE WE BRING PARTNERS
IN.
OUR YOUTH LEAD THESE SESSIONS.
THEY DECIDE THE SESSION TOPICS
AND THEY LEAD THEM WITH A
PROFESSIONAL IN THE SPACE BUZZ
REALLY THEY ARE THE * ONE THAT'S
ARE GUIDING.
AND OUR FAMILIES THEIR VOICES
ARE DRIVING AND BUILDING
LORENZO'S HOUSE.
OUR BE THE SPARK CAMPAIGN CAME
ABOUT BECAUSE WE HAVE YOUNGER
PROFESSIONALS WHO ARE ADVOCATES.
INCREDIBLY POWERFUL.
THE STIGMA ROUND NOT BEING ABLE
TO TALK.
WE CAN TALK ABOUT CANCER.
WHY NOT ABOUT DEMENTIA AND YET
SO PEOPLE ARE SO INSPIRED.
THERE IS AN INTERNATIONAL BOARD
AND NOW THE BE THE SPARK
CAMPAIGN TO HAVE A CHAPTER IN
YOUR OWN TOWN.
HOW DO WE SHIFT THE NARRATIVE
AND SHINE THE LIGHT ON STIGMA.
YES I WANT TO DO SOMETHING IN MY
HOME AND BE INFORMED BUT I ALSO
WANT TO BE SOMEONE WHO'S
ACTIVELY DISMANTLING THE STIGMAS
THAT SURROUND MY FAMILY, MY DAD
OR MY MOM OR EVEN MYSELF.
THESE ARE A FEW OF THE EARLY
SHOTS OF LIGHT THAT OUR KIDS ARE
BUILDING AS A WAY TO BOTH
SUSTAIN THEMSELVES AND BUILD A
COMMUNITY WHERE THEY CAN FIND
DIRECTION AND SUPPORT AND TO
BUILD THIS PATH FOR THOSE WHO
COME BEHIND THEM UNTIL A CURE IS
FOUND.
AND THEN THESE ARE OUR VALUES
AND LORENZO'S HOUSE IS A
BEAUTIFUL PLACE.
IT'S HEALING ME AND I'M SO
GRATEFUL.
FOLLOW US ON SOCIALS.
THERE IS -- THERE WAS A FLITCH H
HERE.
IT SHOULD BE INFO@LORENZO'S
HOUSE.ORG.
THANK YOU EVERYONE FOR THE
OPPORTUNITY.
THAT. THANKS TO EACH OF YOU FOR
THE AMAZING PRESENTATIONS THAT
YOU BROUGHT.
WE REALLY HAVE BEEN ABLE TO
DISCUSS RESILIENCE IN CARE
GIVING FROM A BROAD SPECTRUM
TALKING FROM THE PERSPECTIVE OF
CAREGIVERS, THE ISSUE OVER-ALL
AS WELL AS THE ADVANCES -- IN
RESEARCH.
WE HAVE SOME QUESTIONS THAT WE
HAVE RECEIVED FROM THE
ATTENDEES.
AND I'M GOING TO THROW THEM OUT
THERE.
IF I KNOW WHO IT IS THEN IT
MIGHT BE LOGICAL TO START WITH.
IF NOT I'LL LET YOU ALL GO -- IT
WILL GO ORGANICALLY BECAUSE
YOU'RE THE EXPERTS.
THE FIRST QUESTION IS -- HOW DO
YOU FIND RESILIENCE IN RESOURCES
FOR LATE STAGE ALZHEIMER'S WHEN
MY SPOUSE IS JUST STARING AHEAD
AND NOT WANTING TO BE TOUCHED?
I THINK LORETTA THIS MIGHT BE A
GOOD ONE FOR YOU TO JUMP IN AND
THEN WE CAN MOVE FROM THERE.
>>YEAH.
THANKS SO MUCH.
I WAS LUCKY IN ONE SENSE THE
LEGO BRICKS.
WE HAD BEEN DOING THAT MY WHOLE
LIFE SO WE KEPT THAT GOING AND
EVEN ON THE DAY THAT SHE DIED
SHE HAD LEGO BRICKS IN HER
HANDS.
SO ONE THING IS SEE IF YOU CAN
GET A RESPONSE FROM HIM IN
SOMETHING THAT YOU ALL USED TO
DO ALL THE TIME.
AFTER MY MOM LEGO DID HELP HER
FIND A LOT OF HER WORDS AND EVEN
AT THE END.
I WOULD START WITH THAT AND WE
CAN TALK OFF-LINE ABOUT SOME
ACTIVITIES.
I'VE BEEN TO PEOPLE'S HOUSES
WITH ACTIVITIES.
IT IS THE HARDEST THING BUT I
THINK KIND OF LIKE DIANA WAS
SAYING MUSIC WAS ALSO WONDERFUL
FOR US.
THANK YOU ALEXA.
BECAUSE WE PLAYED EVERYTHING IN
THE CAR.
HER FAVORITE STATION WAS FRANK
SINATRA.
THEY ARE IN THERE.
ONE OF THE HARDEST THINGS FOR US
WHEN IT GETS TO THE LAST PIECE
IS TO BRING THEM OUT.
AND ROBIN ROBERTS SAID IT BEST
-- YOU KNOW YOU SPENT SO MUCH
TIME TRYING TO BRING YOUR MOTHER
OUT.
I DID.
I THOUGHT THAT WAS MY THING.
EVEN ON THE LAST DAY.
I TOLD MANY PEOPLE I SHOWED THE
LAST PICTURE OF HER -- AND I
PROMISED HER THAT WE WOULD DO --
WE WOULD HAVE JOY EVERY DAY AND
NOW WE KNOW -- YOU FIND ONE
MOMENT.
SO I STUCK WITH THAT.
SO MY ONLY REGRET IS THAT SHE IS
NOT THERE.
BUT I UNDERSTOOD THE ASSIGNMENT.
I GAVE HER JOY EVERY DAY.
BUT THE HARDEST PART IS JUST
TRYING TO ERASE THE STARE.
SEE IF YOU CAN TRY DIFFERENT
THINGS.
START WITH THE MUSIC AND SEE IF
HE COMES AROUND.
A GLIMPSE OF A SMILE THAT WILL
MAKE YOU REMEMBER TIMES THAT I
USED TO SHARE.
THAT IS A LOT BETTER THAN
NOTHING.
>>DOES ANYBODY ELSE HAVE
ANYTHING THAT THEY WOULD LIKE TO
FOLLOW-UP ON WITH LORETTA'S
ANSWER
>>I WOULD LIKE TO ADD ONE --
WHEN THINGS ARE REALLY
CHALLENGING THE IMPORTANCE IS
HOW TO ACCEPT THE SITUATION AND
TRY TO FIND MEANING FROM THE
PROCESS.
MAYBE IF THERE ARE OTHER
FAMILIES OR FRIENDS THAT IS
IMPORTANT FOR YOUR LOVED ONES
YOU CAN INVITE THEM AND
CONNECTING WITH THEM AND SHARE
YOUR MEMORIES AND SORROW AND JOY
WITH THEM AND THAT PROCESS WILL
ALSO BRING MEANING TO THE
PROCESS.
>>I WAS ON MUTE.
SORRY ABOUT THAT.
ANYBODY ELSE?
IT'S CLEAR THAT THERE IS A NEED
FOR MUCH MORE RESEARCH ON
RESILIENCE AND CAREGIVING.
DO YOU HAVE ANY SUGGESTIONS ON
WAYS TO ADVANCE THE RESEARCH ON
RESILIENCE AND CAREGIVING.
I THOUGHT OTHERS MIGHT -- HAVE
SOMETHING TO ADD.
>>I'M HAPPY TO GET US STARTED.
ONE THING AS I MENTIONED IT'S
FOR DEVELOPING THE MEASURE.
IF WE DO NOT HAVE A GOOD MEASURE
TO CAPTURE THE EXPERIENCES,
THERE ARE RESILIENCE MEASURES
THAT CAN BE USED -- HAVE TO
START SOMEWHERE AND DO
QUALITATIVE RESEARCH.
BACKGROUNDS AND EXPERIENCES.
WHAT DOES RESILIENCE MEAN TO
THEM BECAUSE IT CAN BE
DIFFERENT.
THERE ARE SO MANY INNOVATIONS.
SO MUCH INNOV INNOVATIVE PRACTI.
RESEARCHERS -- COLLABORATE AND
LEARN FROM THEM AND THEIR WISDOM
AND DEVELOP A PROGRAM WITH THE
PRACTITIONERS AND CARE PARTNERS
AND CONTINUE DEVELOPING THE
RESEARCH ON RESILIENCE
CAREGIVING.
>>I'LL JUST SAY I DON'T HAVE
ANYTHING FURTHER TO ADD BUT
THANK YOU FOR HIGHLIGHTING THE
IMPORTANCE OF THE QUALITATIVE
ASPECT.
CORRELATING WITH THE LIVED CARE
GIVER.
ONCE WE HAVE THAT PERSPECTIVE
AND THE CONTINUED USE OF
MEASURES THEN WE CAN CERTAINLY
MOVE FORWARD.
PLEASE JUMP IN LORETTA.
>>IS SUCH AN IMPORTANT
QUESTION.
IF I COULD CHANGE ONE THING I
MIGHT CHANGE ONE THING.
I MENTIONED BRIEFLY THE
FACILITATOR -- LEGO SERIES PLAY
AND I'M A TRAINED FACILITATOR IN
THAT METHODOLOGY.
IT DOES JUST WHAT WE HEARD.
IT HELPS PEOPLE BUILD MEMORIES.
SO WHAT I TRY TO DO I STARTED MY
FOCUS WAS JUST SELFISH THING
BECAUSE IT WORKED VERY WELL.
I STARTED DOING IT AT ADULT DAY
PROGRAMS.
MEMORY CARE FACILITIES.
AND DURING COVID JOHNS HOPKINS
WAS MY LARGEST PARTNERS.
CAN YOU DO SOMETHING WITH THE
CAREGIVERS.
SO I STARTED BUILDING WITH THE
CAREGIVERS ON-LINE HOPE AND JOY
AND RESILIENCE.
AND THE WHOLE THING ALL DAY.
LAST WEDNESDAY WITH THE STAFF
AND IT'S STUNNING WHAT I HAD
THEM BUILD A BRIDGE TO
RESILIENCE WHEN YOU'RE FEELING
DOWN AND THE WHOLE PREMISES IS
EVERYBODY AGREES TO BUILD AND
SHARE.
LEGO CREATED IT AS A WAY TO GET
THEIR OWN BUSINESS TO
COMMUNICATE MORE EFFECTIVELY AND
TO LISTEN AND THAT ALL VOICES
ARE HEARD AND THAT IS PERFECT
FOR PEOPLE WITH DEMENTIA.
THAT WAS A WINNER FOR ME.
I WAS NOT OVERLOOKING THE
CAREGIVERS INTENTIONALLY.
HAVE I EVER TRACKED PEOPLE WITH
DEMENTIA BEFORE.
I COME WHO HAD NOT TALKED IN
YEARS TALKED AFTER I HAD THEM
BUILD THEIR FAVORITE VACATION.
AND PEOPLE WENT BIZERK AND FOR
THE CAREGIVERS IT'S SO
EMOTIONAL.
THEY WILL BUILD THIS LEGO BOX.
AND NOBODY IS GOING TO JUDGE YOU
BECAUSE THEY FELT LIKE THEY WERE
IN A BOX TOO.
SO EVERYBODY SHARES AND YOU FEEL
SAFE.
DIANA DID SUCH A GREAT JOB OF
TALKING ABOUT LORENZO'S HOUSE
AND THAT SPACE.
EVERYBODY IS BUILDING THIS THING
AND THE EMOTIONAL IS WHEN THEY
POINT TO THE DIFFERENT PIECES.
WHEN I ASKED MY MOM TO BUILD HOW
SHE FELT WITH HER DEMENTIA
DIAGNOSIS AND SHE POPPED THE
HEAD OFF AND SAID SHE FELT LIKE
SHE WAS LOSING HER HEAD.
THE THING WE HAVE TO REMEMBER --
-- THE ONE THING DIFFERENTLY
WOULD BE TO NOT ONLY TRACK HOW
MY MOTHER PROCESSED MEMORIES,
SHE WAS ALWAYS BUILDING THAT
HOUSE THAT SHE GREW UP IN 1929.
I'M TALKING ABOUT THE HOUSE I
GREW UP IN.
SO THEY GO WAY BACK AND BUILD
THESE AMAZING THINGS.
SO WHEN THE "NEW YORK TIMES"
CAME AND SAID HOW CAN SHE DO
THAT.
BECAUSE SHE HAD THE BLANK STARE.
AND AT THE END HE SAID LET ME
SEE THE LEGO BRICKS.
SHE CAME RIGHT BACK TO LIFE.
OH, HELLO.
LIKE HE HAD JUST WALKED IN.
AND WHY CAN SHE DO THAT AND I
SAID I DON'T KNOW.
AND I DIDN'T CARE.
I WAS TOO BUSY TRYING TO BRING
THE JOY.
I WOULD LOOK AT HOW IT WORKS SO
HOW IT GOT -- BRINGS OUT THOSE
KIND OF MEMORIES THAT WE CAN
TRACK SO NOW WHEN I GO AND WORK
WITH PEOPLE WITH DEMENTIA
ESPECIALLY IF THEY TALK AGAIN
TRACK WHAT WE WERE DOING AT THE
TIME BUT THAT IS THE BEST THAT I
COULD DO.
THANKS.
>>AND CAN I ADD SOMETHING THAT
IS DIFFERENT -- I LOVE YOUR
ENERGY.
LET'S HAVE LUNCH.
AND EVERYBODY HERE -- A PLUG FOR
YOUNG PEOPLE WHO ARE WALKING
WITH THEIR PARENTS.
SO MANY OF THEM DON'T WANT TO BE
SEEN AS CAREGIVERS.
SO I SAY THAT WITH LOVE.
WE NEED RESEARCHERS WHO ARE
LOOKING SPECIFICALLY AT OUR
YOUNG PEOPLE.
WHO HAVE A PARENT BECAUSE THEY
ARE GOING TO KNOW THE DIAGNOSIS.
THEY ARE GOING TO UNDERSTAND
THIS BETTER THAN ANY OF US.
I'VE BEEN INTRODUCED TO THREE,
TWO IN THE UK AND ONE HERE WHO
ARE LOOKING AT YOUNGER CHILDREN
AND THAT KIND OF RESEARCH.
>>ABSOLUTELY AMAZING.
IT'S SO GOOD TO BE HERE AND YOUR
ENERGY.
I'M GETTING GOOSE BUMPS OVER
HERE.
SO THE NEXT QUESTION WE HAVE IS
WHAT PRACTICAL SUGGESTIONS DO
YOU HAVE FOR HEALTH CARE STAFF
TO SUPPORT AND ENHANCE
RESILIENCE IN THEIR PATIENCE OR
THE PEOPLE THAT THEY WORK WITH
NOT NECESSARILY PATIENTS.
>>WHO WANTS TO START WITH THAT
ONE?
WELL, I WILL TELL YOU WHAT
HAPPENED ON WEDNESDAY WHEN I
WENT.
IT USUALLY TAKES BETWEEN 90
MINUTES AND TWO HOURS SO THEY
CALL AND SAY -- I ONLY HAVE 30
MINUTES TO GIVE YOU FOR EACH
GROUP.
WE WENT TO EVERY FLOOR AND
WHOEVER WAS AVAILABLE THE CHEF,
THE PHYSICAL THERAPISTS, THE
HOUSEKEEPER.
WE THROUGH THEM AT TABLES AND
THEY WERE BUILDING TEAM
RESILIENCE.
THEY DIDN'T FEEL THAT SOME OF
THE PEOPLE BOUNCE BACK AFTER
COVID SO THEY WANTED TO LOOK AT
HOW THAT FELT.
SOME WAS STUNNING.
I HAD TO COME HOME AND
DECOMPRESS.
TWO DAYS LATER I GOT A NOTE FROM
THE CEO SAYING THEY ARE STILL AT
THEIR DESK BUILDING.
A STRESS REDUCER.
I THOUGHT IT WOULD BE GOOD.
THE RESULTS -- IT'S BEEN
STUNNING.
THE WHOLE BUILDING WAS BUZZING.
I CALLED IT SPEED LEGO AND WE
DID NINE SESSIONS WITH 92 PEOPLE
AND IT WAS ONE OF THE MOST
UNBELIEVABLE.
I NEVER MOVED THAT FAST IN MY
LIFE BUT IT WAS WORTH EVERY
SECOND TO SEE THEM CHEERING FOR
EACH OTHER.
THEY LEARNED STUFF FROM THAT
LEGO BUILD THAT THEY WOULD NEVER
SHARE IN A REGULAR CONVERSATION.
I'M HAVING THEM BUILD AND THAT
WAS YOUR POINT.
WHAT IS THE DEFINITION OF
RESILIENCE?
ONE PERSON HAD A THING -- TO
KEEP THEM FROM JUMP OFF THIS
BRIDGE.
IT WAS OUT THERE.
SO, THAT IS HOW I USE IT.
>>THANK YOU.
ANYBODY ELSE HAVE THOUGHTS ABOUT
PRACTITIONERS?
>>I HAVE A THOUGHT ACTUALLY I
HAVE TWO.
AND I WOULD LOVE TO ENCOURAGES E
DIANE AND LORETTA.
ONE IS ASK CAREGIVERS.
ACKNOWLEDGING THEM AND I HEAR
YOU DIANA ABOUT THE YOUNG
CAREGIVERS OR THOSE WHO DON'T
IDENTIFY THEMSELVES AS
CAREGIVERS ONE BECAUSE OF THEIR
AGE AND IN GENERAL THIS IS STILL
A CHALLENGE.
EVEN ASKING CAREGIVERS HOW THEY
ARARE.
ACKNOWLEDGING THEM.
SO, THAT IS THE FIRST THING.
AND THE SECOND THING IS I WOULD
ENCOURAGE THE NORMALIZATION OF
CAREGIVERS AND I'M USING THAT
TERM FOR NOW BUT TO CARE FOR
THEMSELVES.
IF YOU HEAR IT FROM YOUR
PROVIDER WHO IS LIKE WHEN WAS
THE LAST TIME YOU HAD A DOCTOR'S
APPOINTMENT OR WHEN DID YOU GET
YOUR TEETH CHECKED OUT AND
SAYING IT'S OKAY TO TAKE SOME
TIME FOR YOURSELF BECAUSE YOU
CANNOT POUR FROM AN EMPTY CUP.
NORMALIZES THOSE PIECES AND HOW
IMPORTANT IT IS FOR THE
CAREGIVERS TO FIND WAYS TO CARE
FOR THEMSELVES.
THOSE ARE MY THOUGHTS BUT I LOOK
TO YOU LORETTA AND DIANA FOR
YOUR EXPERIENCE AND WISDOM.
>>I THINK YOU HAVE CRUSHED IT
BY SAYING BY BEING ABLE TO STATE
IT.
ASK THE QUESTION AND I'LL ALWAYS
USE THAT LANGUAGE.
IT'S A DIAGNOSIS OF THE FAMILY.
USUALLY USE THE WORD CONDITION.
WE'RE A PART OF THIS AND WE'RE
-- WE HAVE NO IDEA THIS NEW
SPACE THAT WE'RE ENTERING INTO.
WE ARE IN SHOCK BUT THERE IS A
SENSE OF RELIEF SOMETIMES.
THERE IS AN ANSWER.
THE NEXT STEP IF SOMEONE TOLD ME
THE NEXT STEP IS NOT JUST ABOUT
LORENZO THAT WOULD HAVE SAVED ME
TIME.
YOU BECOME THIS MEDIOCRE
EVERYTHING.
-- I NEEDED MY OWN MOTHER TO SAY
DIANA KEEP AN EYE ON JUSTIN
BECAUSE YOU'RE SO FOCUSED ON
YOUR HUSBAND.
I THOUGHT I WAS STILL GIVING THE
LOVE BUT I GUESS IF WE CAN COME
UP WITH SOME MODEL SOME
UNIVERSAL WAY OF SAYING WITH
DEMENTIA AND I CAN ONLY SPEAK TO
THE DISEASE OF ALZHEIMER'S.
THE FAMILY WALKS THIS.
YES LORENZO WILL TAKE THIS PATH
BUT YOUR SONS AND YOU HAVE OTHER
CARE PATHS AND RECOGNIZE THAT.
I THINK THAT IS HUGE.
AND THE MODEL OF CARE TEAMS IS
BRILLIANT.
ABOUT THE NEUROLOGIST THAT CAME
IN.
HOW MANY -- DO YOU HAVE WHERE
YOU SAY YOU'RE NOT MY
NEUROLOGIST.
WE'VE GOT SO MANY FAMILIES
COMING FROM RURAL KENTUCKY AND
OKLAHOMA AND UTAH.
BUT THAT IDEA OF THAT CARE TEAM.
SO A DR. AND THIS TEAM WAS A
UNIT THAT CLOSED IN OURS AND I
HAD TO LOOK FOR THAT AND I AM IN
A CITY WHERE I HAVE THOSE
RESOURCES AND I'LL STOP.
I TALK TOO MUCH
>>THERE IS NO TALKING TOO MUCH.
>>I WOULD ADD TO THAT GETTING
CAREGIVING INTO CURRICULUM OF
WORKFORCE AND MAKING SURE THAT
THEY THEY THE SAME LANGUAGE.
I'M NOT THE EXPERT THAT YOU ARE
BUT I'VE LIVED THIS TOO AND NOT
MY MOTHER WAS OLDER.
BUT MY GRANDMOTHER HAD THE EARLY
ONSET SO I GET IT AND WHAT WE DO
AT ACL GETTING IT INTO THE
WORKFORCE DEVELOPMENT AND THE
WORKFORCE IS SUPER IMPORTANT.
LET'S SEE ... SO DO ANY OF YOU
HAVE ANY THOUGHTS ON THE IMPACT
OF SUPPORT GROUPS ON CARE GIVER
RESILIENCE OVER TIME?
THAT QUESTION CAME IN FROM OUR
WATCHERS.
>>THEY FEEL CAMARADERIE IN THE
GROUP.
SO I CO-MODERATE A FACEBOOK
SUPPORT GROUP AND AGAIN PEOPLE
KNOW AND THE AARP FAMILY CARE
GIVER DISCUSSION GROUP TOO.
YOU SEE PEOPLE PUT IN ACTUAL
TRUTH BECAUSE THEY KNOW, TODAY
WAS THE WORST DAY EVER.
I CAN'T BELIEVE YOU SAID THAT
OUT LOUD BUT YOU HAVE TO SAY
THAT.
HOW ARE YOU DOING?
I WAS NOT FINE AND I WAS NOT
GOING TO SAY I WAS.
WE HAVE TO BE HONEST AND THEN
PEOPLE REALLY RESPECT THAT.
THANK YOU FOR SHARING THAT.
I FEEL LIKE I CAN TALK TO YOU.
NOT JUST HELPFUL.
THEY CAN BE LIFESAVING IN SOME
CASES.
WE'VE MADE SOME CALLS WHERE WE
THOUGHT -- I USED TO GET UP AT
4:00 IN THE MORNING AND GO TO
WORK -- A WOMAN IN CANADA WHO
WAS IN A HA -- A SUPPORT GROUP O
SAID SOME THINGS THAT CONCERNED
US AND THE RO -- ROYAL CANADIAN
POLICE WE GOT TO GO TO HER
HOUSE.
THEY WANT DAD TO COME SEE THEM
PLAY B-- PLAY BASKETBALL LIKE HD
TO.
EVERYBODY LOOKS GOOD.
NOBODY LOOKS LIKE THEY ARE ABOUT
TO GO OVER THE CLIFF.
I FELT LIKE THAT WAS MY
RESPONSIBILITY TO SEE HOW PEOPLE
WERE.
>>YOU KNOW AT LORENZO'S HOUSE
WHAT HAS HAPPENED ORGANICALLY --
AND AGAIN YOU'VE GOT NOW WE HAVE
SOMETHING CALLED OUR BRIGHT
BRUNCH.
WHERE WOMEN HANGOUT.
IT'S A FORMAT WHERE THERE MIGHT
BE 50 OF US AND WE BREAK INTO
GROUPS OF 10 AND THEN CARES
GUIDE THAT.
THAT HAS BECOME A WOMEN'S GROUP.
THIS IS WHERE WE ARE TODAY AND
THEN A COUPLE OF GUYS AND THEY
SAID -- AND NOW A LIGHT LOUNGE
FOR MEN.
TWO MEN.
ONE FROM CALIFORNIA AND ONE FROM
MICHIGAN.
THEY CREATED THIS AND NOW THERE
ARE OVER 40 MEN AT THE LIGHT
LOUNGE.
THIS IS THE BEST 90 MINUTES OF
MY MONTH.
>>THAT IS SO COOL AND THEY ARE
ALL THERE TALKING ABOUT IN THEIR
MALE -- IT'S A MALE CARE GROUP.
I DON'T KNOW HOW YOU MEASURE ALL
OF THAT AND WHAT THAT DOES.
BUT THESE KINDS OF GROUPS AND
WHAT I'M FINDING IS THAT WHEN
YOU'RE GETTING PEOPLE NARROWING
DOWN INTO YOUR PROFILE.
YOUNGER KIDS WHO HAVE A PARENT.
AND SOMEBODY WHO'S YOUNGER WITH
KIDS.
I CAN'T SAY ENOUGH -- AND I'M
NOT A BIG JOINER.
I WOULD RATHER DO THE ONE-ON-ONE
THING BUT YOU BEGIN TO JOIN IN
AND LEAN IN AND BECOME A PART OF
THE SISTERHOOD.
IT'S A BROTHERHOOD.
IT IS FAMILY.
THERE IS SUCH A VISUAL DEEP,
LIKE I GOT YOU * BECAUSE THE
JOURNEY IS SO HARD.
THERE IS SO MUCH GOING ON.
OKAY.
I GOT YOU.
IT CONNECTS US AND IT'S GOING
BACK TO THE POWER OF CONNECTION.
IF YOU DO NOTHING BUT THAT WE
CAN BREATHE BETTER.
AS PEOPLE WALK IN THIS.
>>I'M CLOSER TO SOME OF THOSE
PEOPLE THAN TO SOME PEOPLE IN MY
OWN FAMILY.
THAT IS ABSOLUTELY TRUE.
I WOULD DRIVE FOR MILES AND
MILES TO SEE SOME OF THESE
PEOPLE IN PERSON.
YOU ARE SISTERS BY THEN.
SO, ITS AMAZING.
>>YEAH.
>>TALK ABOUT SILVER LINING.
THERE IT IS.
YOU'VE GOT A NEW FAMILY.
>>THIS HAS BEEN GREAT.
THANK YOU SO MUCH FOR YOUR TIME
FOR YOUR HONESTY.
GOT A LITTLE RAW FOR ME AT
LEAST.
I DON'T KNOW IF IT GOT A LITTLE
RAW FOR YOU.
WE SO APPRECIATE YOU BEING
WILLING TO SHARE YOUR
EXPERIENCES AND YOUR WISDOM WITH
US.
WE DO HAVE THIS SERIES JUST FOR
THIS.
THE WEBINAR WAS RECORDED SO IT
WILL BE POSTED ON THIS LAST
SLIDE IT SHOWS WHERE IT'S
POSTED.
IF YOU DON'T SEE THE SLIDE HIT
FOCUS ON AGING IN YOUR GOOGLE
AND IT WILL COME RIGHT UP
BECAUSE NIA MUST DO AN AMAZING
JOB IN THEIR SET UPS FOR
AWARENESS.
I WANT TO THANK EACH AND EVERY
ONE OF YOU FOR BEING WITH US.
AND TAKING THE TIME TO SHARE
THIS WITH OUR GROUP.
I DON'T HAVE ANYTHING ELSE TO
SAY.
BUT THANK YOU, THANK YOU.
HOPEFULLY WE'LL CONTINUE TO
LEARN.
MAYBE WE SPARKED A LITTLE BIT OF
RESEARCH DEVELOPMENT AND SOME OF
IDEAS IN SOME RESEARCHERS HEADS
ABOUT WHO NEEDS TO BE THINKING
ABOUT WHO AND TALKING ABOUT WHO.
AND GETTING SOME ANSWERS FOR
WORKING WITH YOUTH AND GETTING
THAT RESILIENCE FRONT AND
CENTER.
SO THAT EVERYBODY SURVIVES.
>>YES.
THANK YOU SO MUCH FOR HAVING ME.
I PUT MY INFORMATION IN THE CHAT
BOX.
>>I HOPE YOU ALL HAVE A GREAT
REMAINDER OF YOUR DAY.
IF YOU HAVE ANY QUESTIONS FOR
ANY OF US ON THE FEDERAL
PARTNER'S TEAM PLEASE REACH OUT
TO US.
WE WILL GET BACK TO YOU AS SOON
AS WE CAN.
IF YOU HAVE ANY OTHER QUESTIONS.
THANK YOU SO MUCH.
EVERYONE HAVE A GREAT DAY.