>> GOOD MORNING, I'D LIKE TO WELCOME TO YOU DAY TWO. THERE'S A LARGE CONTINGENT MAKING THEIR WAY THROUGH SECURITY, THAT WILL NOT TAKE AWAY OR DETER OUR PANEL WHO WILL SPEAK OVER WHEN THAT HAPPENS. SO IT'S REALLY GOOD TO WELCOME YOU BACK TO DAY 2. WE HAD SUCH A GOOD DAY YESTERDAY. WE'RE EXCITED TO HAVE YOU HERE TODAY. WE'RE LOOKING FORWARD TO ANOTHER DAY, A FULL DAY, OF INTERESTING TALKS AND PANEL AND GOOD CONVERSATIONS. I WANT TO WELCOME YOU THOSE HERE TODAY AND ONLINE LISTENING IN. WE HAD LARGE GROUP OF YOU YESTERDAY, AND KNOW WE HAVE THE SAME TODAY. WE HOPE YOU HAD A GOOD DAY YESTERDAY FROM ALL THE COMMENTS I THINK THE ENTHUSIASM WAS STILL HIGH BY THE TIME WE FINISHED YESTERDAY. I NOTICED THIS MORNING IT APPEARS TO BE THE SAME. SO WELCOME BACK. WE -- I WOULD LIKE TO ONCE AGAIN ACKNOWLEDGE OUR PARTNERS IN THIS ENTERPRISE. WE HAD VERY STRONG SUPPORT FROM ACROSS THE NIH, OFFICES AND INSTITUTES, AND WE'RE EXCITED ABOUT THAT BECAUSE WE'RE OBVIOUSLY EXCITED ABOUT THE SUPPORT BUT IT'S REALLY AN INDICATION OF THE LEVEL OF INTEREST AND ENTHUSIASM AND INVESTMENT IN THIS PARTICULAR AREA WHICH WE FEEL IS SO IMPORTANT. JUST TO REMIND YOU WHO OUR PARTNERS ARE, THEY ARE PEPPERED THROUGHOUT THE PROCEEDINGS YESTERDAY AND TODAY. BUT THEY INCLUDE NATIONAL CANCER INSTITUTE, NATIONAL INSTITUTE ON AGINGS, EUNICE KENNEDY SHRIVER NATIONAL INSTITUTE OF CHILD HEALTH AND HUMAN DEVELOPMENT, NATIONAL INSTITUTE ON MINORITY HEALTH AND HEALTH DISPARITIES, NATIONAL CENTER FOR ADVANCING TRANSLATIONAL SCIENCES OFFICE OF RARE DISEASES, THE NIH -- THREE OFFICES FROM CENTRAL NIH, OFFICE OF DIRECTOR, OFFICE OF BEHAVIORAL AND SOCIAL SCIENCE RESEARCH, OFFICE OF DISEASE PREVENTION, AND THE OFFICE OF RESEARCH AND WOMEN'S HEALTH. SO THANK YOU, ALL OF YOU, FOR YOUR PARTNERSHIP. WE ALSO ARE PLEASED BECAUSE THESE ARE INSTITUTES AND CENTERS WHO ARE PARTICULARLY INTERESTED IN MOVING FORWARD IN PARTNERSHIP IN THE SIGH SCIENCE AREA, AS WE LOOK AT OUTCOMES. SOME AREAS REFLECTED ARE THE POSITIVE IMPACT, RESEARCH ON POSITIVE IMPACT OF CAREGIVER COMPETENCE, ALSO CAREGIVER EXPERTISE ON IMPROVING CARE OUTCOMES, DEVELOPMENT OF CAREGIVER INTERVENTIONS WITH INFORMAL CAREGIVERS. I'M NOT GOING TO USE THAT WORD ANYMORE. AND COMMUNITY STAKEHOLDERS. AND ALSO IMPLEMENTATION OF SOME OF THE CAREGIVER INTERVENTIONS THAT HAVE BEEN TESTED. SO WE'RE VERY EXCITED TO BE ABLE TO MOVE FORWARD IN A SUBSTANTIVE WAY WITH THESE PARTNERSHIPS. I WOULD LIKE TO ACKNOWLEDGE CONTRIBUTIONS MADE POSSIBLE BY THE FOUNDATION OF THE NATIONAL INSTITUTES OF HEALTH WITH GENEROUS SUPPORT FROM THE AMERICAN ASSOCIATION OF COLLEGES OF NURSING, ONCOLOGY SOCIETY, ONCOLOGY NURSING SOCIETY, AND BECKMAN RESEARCH INSTITUTE CITY OF HOPE DEPARTMENT OF POPULATION SCIENCES, DIVISION OF NURSING RESEARCH AND EDUCATION, AS WELL AS THE HONOR SOCIETY OF NURSING, SIGMA THETA TAU INTERNATIONAL. YESTERDAY WE HEARD A COMPELLING KEYNOTE ADDRESS FROM JUDY WOODRUFF ON HER PERSONAL EXPERIENCE, HER THOUGHTFUL COMMENTS AND SPECIAL INSIGHTS INTO THE MANY CHALLENGING ROLES OF CAREGIVING. ALSO GRACE WHITING FROM THE NATIONAL ALLIANCE FOR CAREGIVING, AND PANELS THAT PROVIDED AN OVERVIEW OF ISSUES AND CHALLENGES IN CAREGIVING AND ANOTHER DISCUSSING OPPORTUNITIES AND PROCESSES FOR CREATING CHANGE IN CAREGIVING INVOLVING RESEARCH AND EVIDENCE-BASED POLICY. AND THAT WAS PARTICULARLY INTERESTING TO US TO HEAR ABOUT SOME OF THE POLICY ISSUES THAT MAKE THIS AREA PARTICULARLY CHALLENGING. THESE DISCUSSIONS ALSO SHOWED US THE CHALLENGES THAT LIE BEFORE US DEMONSTRATED THE OPPORTUNITIES THAT ARE AVAILABLE, THAT WE MAY CAPITALIZE ON, AND TO BE ABLE TO MAKE A DIFFERENCE IN THE IMPROVING THE LIVES OF THE CAREGIVERS AND THE CARE RECIPIENTS. GIVEN THE EVER-INCREASING NUMBER OF PEOPLE REQUIRING A CAREGIVER WE KNOW WE HAVE NO TIME TO LOSE. THE PANELS TODAY AS WE MOVE THROUGH TODAY WILL FOCUS ON THE SCIENCE THAT FORMS THE BASIS OF OUR UNDERSTANDING OF CAREGIVING, CAREGIVERS, CARE RECIPIENTS AND HEALTH OUTCOMES AND QUALITY OF LIFE. WE WILL DO THIS BY FOCUSING ON THREE PARTICULAR ASPECTS OF CAREGIVING ACROSS THE LIFESPAN. THE FIRST PANEL FOCUSES ON CAREGIVING IN CHILDREN, TEENS AND YOUNG ADULTS. THE SECOND ON CAREGIVING OF INDIVIDUALS WITH ACUTE ILLNESSES AND CONDITIONS. AND THE THIRD ON THE CAREGIVING OF INDIVIDUALS WITH CHRONIC CONDITIONS AND DEMENTIA. OUR GOAL IS TO OBTAIN A BETTER UNDERSTANDING OF NEEDS AND CHALLENGES IN EACH OF THESE FORWARD IN USING SCIENCE TO ADDRESS THESE PARTICULAR CHALLENGES. SO HAVING DESCRIBED THE EXCITEMENT THAT WE'RE IN FOR LET'S GET STARTED. IT IS MY PLEASURE TO INTRODUCE OUR DIRECTOR OF CEREMONIES FOR TODAY, AND THAT IS DR. LAURA GITLIN, AN APPLIED RESEARCH SOCIALOLOGISTIST WHO HOLDS JOINT APPOINTMENTS IN THE SCHOOL OF NURSING AND MEDICINE AT JOHNS HOPKINS UNIVERSITY, THE FOUNDING DIRECTOR OF THE CENTER FOR INNOVATIVE AGING, INNOVATIVE CARE AND AGING AT THE HOPKINS SCHOOL OF NURSING, INTERNATIONALLY RECOGNIZED FOR RESEARCH ON DEVELOPING, EVALUATING AND IMPLEMENTING NOVEL HOME AND COMMUNITY-BASED APPROACHES, THAT IMPROVE QUALITY OF LIFE FOR PERSONS WITH DEMENTIA AND THEIR FAMILY CAREGIVERS. SHE'S ALSO THE AUTHOR OF CLOSE TO 300 SCIENTIFIC PUBLICATIONS WITH FORTHCOMING BOOK ON 2017 ON TRANSFORMING DEMENTIA CARE AND SERVICES. WE WELCOME DR. GITLIN. PLEASE JOIN ME IN WELCOMING LEER WELCOMING HER TO THE PODIUM AND LOOK FORWARD TO HER TODAY. >> THANK YOU. GOOD MORNING, EVERYBODY. AND THANK YOU SO MUCH, DR. GRADY, FOR THOSE VERY KIND REMARKS AND INTRODUCTION. AND THANK YOU TO THE NINR AND OTHER SPONSORS AND PARTNERS FOR THE HONOR OF BEING THE DIRECTOR OF CEREMONY. THAT'S THE FIRST TIME I'VE EVER HAD THAT TITLE, SO I HOPE IT WORKS OUT. I WANT TO WELCOME EVERYBODY IN THE AUDIENCE, AND I UNDERSTAND WE HAVE A LARGE CONTINGENCY OF PEOPLE ONLINE, SO WELCOME TO OUR ONLINE FOLKS. AS DR. GRADY INDICATED, WELCOME TO DAY 2, AFTER A VERY INTERESTING AND INSPIRING DAY 1 HEARING THE VOICES AND LIVED EXPERIENCE, IF YOU WILL, OF DIFFERENT KINDS OF CAREGIVING SITUATIONS. AND TODAY WE'RE GOING TO GO A LITTLE DEEPER AND LOOK INTO THE RESEARCH AS DR. GRADY INDICATED. AND AS A WAY OF STARTING THE DAY, I WANTED TO -- I PUT US ALL ON THE SAME PAGE, IF YOU WILL, AND I WANTED TO START BY CALLING UP THE WORDS OF FORMER FIRST LADY ROSALYNN CARTER. MARK GIBBONS ALLUDED TO THIS YESTERDAY. BUT MANY, MANY YEARS AGO, FORMER FIRST LADY ROSALYNN CARTER WAS ONE OF THE FIRST TO REALLY MAKE THE FAMILY CAREGIVER PROMINENT IN PUBLIC HEALTH, IN PUBLIC POLICY, AND IN THE EYES OF THE PUBLIC, AND SHE SAID THERE ARE ONLY FOUR KINDS OF PEOPLE IN THE WORLD. SO DO YOU KNOW WHO THEY ARE? THOSE WHO HAVE BEEN CAREGIVERS, RIGHT? SHOW OF HANDS. THOSE WHO CURRENTLY ARE CAREGIVERS. SHOW OF HANDS. THOSE WHO WILL BE CAREGIVERS. WE HAVE ALL TO RAISE OUR HANDS. AND THOSE WHO WILL NEED CAREGIVING. THIS REALLY DOES REFLECT THAT THIS IS A UNIVERSAL CONDITION, IF YOU WILL, THAT AFFECTS ALL PEOPLE ACROSS ALL RACES, ETHNICITIES AND CULTURES, AND SOCIOECONOMIC STATUS, BUT IN THE FACT THOSE CIRCUMSTANCES ARE CIRCUMSTANCES AND RESOURCES DO AFFECT OUR OWN HEALTH AS CAREGIVERS, HOW WE COME TO BE CAREGIVERS AND SOCIAL OUTCOMES. WE WANT TO PAY CLOSE ATTENTION TO ASPECTS THAT INFLUENCE ANY ONE OF THESE FOUR CATEGORIES THAT WE'LL ALL FIND OURSELVES IN. ALSO AS A WAY OF BEGINNING I WANTED TO BRING UP A QUOTE FROM THE NATIONAL ACADEMIES OF SCIENCE, FAMILIES CARING FOR AN AGING SOCIETY, AND WHILE THE TASK OF THIS PARTICULAR REPORT WAS TO FOCUS ON CAREGIVING OF OLDER ADULTS, I THINK THE STATEMENT RINGS TRUE AND REFLECTS WHAT WE LEARNED YESTERDAY, AND THE WAY WE WILL BE THINKING ABOUT IT TODAY. ALTHOUGH AN INTENSELY PERSONAL ISSUE, FAMILY CAREGIVING HAS BECOME AN URGENT PUBLIC POLICY ISSUE, LINKED TO IMPORTANT SOCIAL, HEALTH, AND ECONOMIC GOALS. SO IT'S BOTH PERSONAL AND UNIVERSAL, NOT JUST ABOUT THE FAMILY BUT ALSO ABOUT OUR COMMUNITY, OUR SOCIETY AND HEALTH POLICIES. I'M GOING TO RETURN TO THAT ISSUE IN A MOMENT, BECAUSE THE QUESTION OR ELEPHANT IN THE ROOM REALLY IS WHAT'S THE RIGHT BALANCE BETWEEN PERSONAL RESPONSIBILITY AND SOCIETAL RESPONSIBILITY? SO ALSO AS A WAY OF BRINGING US ALL ON THE SAME PAGE, I WANTED TO JUST REVIEW SOME OF THE CRITICAL DRIVERS AS TO WHY WE'RE HERE. WHY HAVE THAT CONFERENCE ON CAREGIVING SCIENCE NOW? WHAT'S DRIVING THE IMPETUS TO TAKE A DIFFERENT AND MORE CAREFUL AND SCIENTIFIC AND POLICY AND PRACTICE AND EDUCATION PERSPECTIVE ON FAMILY CAREGIVING? AND I THINK YOU ALL KNOW THIS BUT I THINK IT'S WORTH US REVIEWING IT TOGETHER. SO ONE OF THE FIRST MOST CRITICAL DRIVERSES IS THAT WE ARE AN AGING SOCIETY. THIS IS TRUE IN THE UNITED STATES OF COURSE AND ALSO GLOBALLY. SO CAREGIVING IS A UNIVERSAL AND GLOBAL ISSUE, AS WELL. SO PEOPLE ARE AGING THROUGH MEDICAL ADVANCES, SOCIAL ADVANCES, WITH VARIOUS CHRONIC CONDITIONS AND DISABILITIES AND WE'RE JUST LIVING LONGER. THAT HAS A PROFOUND AND WILL CONTINUE TO HAVE A PROFOUND EFFECT ON THE FAMILY CONSTELLATION. IN 2012 THERE WERE 43.1 MILLION ADULTS AGE 65, 13.7% OF THE U.S. POPULATION, INCREASING TO 20% OF THE U.S. POPULATION BY 2030. SO AS I'M SURE ALL OF YOU AR AWARE, WHO IS THE FASTEST GROWING SEGMENT OF THIS POPULATION? IT IS THOSE WHO ARE 80 YEARS OLD AND OLDER, AND WHY SHOULD WE THINK ABOUT THAT? WELL, THEY DO REPRESENT THE GROUP THAT IS MOST LIKELY TO NEED CARE. SO THIS IS A VERY IMPORTANT POINT. ALSO, AND THIS DOES COME FROM THE NATIONAL ACADEMIES OF MEDICINE REPORT, FAMILIES WE KNOW HAVE ALWAYS AND ARE TODAY AND WILL CONTINUE IN THE FUTURE TO PROVIDE LONG-TERM CARE SERVICES, PARTICULARLY IN THE UNITED STATES, WHETHER WE DO NOT HAVE A COMPREHENSIVE NON-FRAGMENTED SYSTEM OF LONG-TERM CARE. WE RELY ON FAMILIES FOR PROVIDING LONG-TERM SERVICES. AND WE CAN SEE FROM JUDY WOODRUFF'S OPENING REMARKS HOW CAREGIVING BEGINS VERY EARLY ON AND WILL CONTINUE THROUGHOUT THE LIFE COURSE OF CHILDREN AS WELL. ALSO, ANOTHER CRITICAL DRIVER FOR US TO CONSIDER, IN TERMS OF SCIENCE, HOW THE SCIENCE GETS TRANSLATED INTO EDUCATIONAL DIRECTIVES FOR HEALTH AND HUMAN SERVICE PROFESSIONALS AS WELL AS POLICY IS THAT OUR SOCIETY IS BECOMING INCREASINGLY DIVERSE. SO THAT MEANS THAT WE HAVE FAMILIES WITH VERY DIFFERENT VALUES AND CULTURES AND BELIEF SYSTEMS AND HOW THEY THINK ABOUT CAREGIVNG AND WHAT THEIR ROLE IS. AND THIS BECOMES VERY IMPORTANT IN TERMS OF HOW WE CAN SUPPORT FAMILIES AND THE PEOPLE THAT THEY ARE CARING FOR. OTHER CRITICAL DRIVERS INCLUDE POTENTIAL GROWING GAP BETWEEN THE DEMAND FOR AND SUPPLY OF FAMILY CAREGIVERS. IF WE'RE RELYING ON FAMILY CAREGIVERS, BUT THERE ARE LESS OF US, BECAUSE THERE'S LESS CHILDREN BEING BORN AND THERE'S FEWER FAMILY MEMBERS AVAILABLE, AND WE'RE MORE GEOGRAPHICALLY DISPERSED, WHAT DOES THAT MEAN? WHAT ABOUT THE WOMAN IN THE MIDDLE WHO REMAINS PRIMARILY THE CAREGIVER? SHE'S NOT ONLY THE MIDDLE IN TERMS OF CARING FOR YOUNG CHILDREN AND POSSIBLY AGING PARENTS, BUT SHE'S ALSO EMPLOYED. WHAT DOES THAT MEAN IN TERMS OF HOW WE'RE GOING TO ADDRESS HEALTH POLICY ISSUES? AND SO WE HAVE ENTIRELY DIFFERENT MIX OF WHO IS AVAILABLE FOR CAREGIVING, AND HOW CAREGIVING PLAYS OUT, AND THAT IS A CRITICAL DRIVER OF WHY WE'RE HERE AND WHAT WE NEED TO UNDERSTAND. AND THEN WE HEARD PRIMARILY FROM SUSAN REINHARD BUT ALSO FROM OTHERS AND SOME OF THE CAREGIVERS WHO INDICATED THEIR STORIES INCLUDING JUDY WOODRUFF, THE UNPRECEDENTED CARE DEMANDS ON FAMILIES. NOT ONLY ARE FAMILIES NEEDING TO PROVIDE EPISODIC CARE BUT TRANSITIONAL AND LONG-TERM CARE OVER THE LIFE COURSE OF A YOUNG CHILD, AS WELL AS AN OLDER ADULT. WE ALSO HEARD HOW THERE ARE DEMANDING AND COMPLEX CARE TASKS INCLUDING WOUND CARE, MEDICATIONS, COORDINATION. MY FORMER DEAN, DR. HILL, USED TO SAY SHE WAS SHOCKED AT WHAT FAMILIES ARE DOING NOW BECAUSE WHEN SHE WAS GROWING UP IN NURSING SCHOOL, THAT WAS REALLY JUST RESERVED FOR NURSING PROFESSION. FAMILIES, WE KNOW AND WE HEARD THAT YESTERDAY, DO NOT HAVE ACCESS TO THE KNOWLEDGE THAT THEY NEED. IT'S NOT ONE TIME. YOU NEED DIFFERENT KNOWLEDGE AT DIFFERENT POINTS ALONG THE ARC AND TRAJECTORY OF CAREGIVING. THE OTHER CRITICAL DRIVER IS CAREGIVING CAN POSE PHYSICAL AND FINANCIAL AND EMOTIONAL RISKS TO INDIVIDUALS ASSUMING THIS ROLE, THAT MAKES THIS A PUBLIC HEALTH ISSUE. THEN WE HAVE MANY OTHER TRENDS CHANGING THE DYNAMICS OF FAMILY CAREGIVING. WE HAVE ADVANCES MEDICALLY THAT ALLOW PEOPLE TO LIVE LONGER AND TO HAVE SHORTER HOSPITAL STAYS. AND THE EXPECTATION IS THAT WHEN A LOVED ONE, A PERSON WHO YOU'RE CARING FOR IS IN THE HOSPITAL, YOU WILL TRANSITION THEM HOME AS THE FAMILY CAREGIVER AND YOU WILL BE THERE TO TAKE CARE OF THEM DESPITE MAYBE LIVING SEVERAL HOURS AWAY OR WORKING IN ANOTHER STATE. THE OTHER TREND ALSO IS THAT THE EXPANSION OF THE ABILITY TO BE CARED FOR AT HOME HAS BEEN PLACED UNDUE BURDEN ON FAMILIES TO BE ABLE TO USE THOSE TECHNOLOGIES. AND THEN OF COURSE ALL OF US HAVE A PREFERENCE TO BE AT HOME, BUT WE HAVEN'T NECESSARILY CONSIDERED HOW AGING IN PLACE DOES IMPACT FAMILY CAREGIVING. AND IF YOU REFLECT ON ALL THE NEW MEDICAL MODELS THAT ARE INDEED EXTREMELY FASCINATING AND IMPORTANT AND ARE SHOWING TO HAVE GREAT IMPACTS ON PEOPLE, THEY ALL DEPEND ON THE FAMILY CAREGIVER, THE HOSPITAL AT HOME MODEL, THE COLLABORATIVE PRIMARY CARE MODELS, THE HOSPICE AT HOME. THEY ALL DEPEND ON HAVING A FAMILY MEMBER AT HOME. SO BY WAY OF INTRODUCTION OF THIS SESSION, WE ARE GOING TO THE FIRST -- IT'S THE FIRST SESSION TODAY BUT IT'S THE THIRD PLENARY OF THE TWO DAYS. WE'RE GOING TO LOOK AT WHO NEEDS CARE AND WHO IS PROVIDING CARE, AND I THINK THAT A LIFE COURSE PERSPECTIVE IS VERY IMPORTANT FOR US TO UNDERSTAND. THIS IS A TRADITIONAL LIFE COURSE PERSPECTIVE, INDICATING THE KINDS OF TASKS THAT EACH OF US HAVE GOING THROUGH THE LIFE COURSE AND KINDS OF SUPPORTS WE WILL NEED. THEN WE HAVE TO OVERLAY ON THAT THE ROLE OF BEING A CAREGIVER. SO IN PLENARY 3, WE'RE GOING TO BE FOCUSING ON CHILDREN, TEENS, AND YOUNG ADULTS. AND WE'RE GOING TO BE LOOKING AT IMPACT OF CARING FOR THESE INDIVIDUALS IN TERMS OF WHERE IT IS IN TERMS OF THE LIFE COURSE OF THE FAMILY CAREGIVER. AND THEN IN PLENARY 4, KIND OF CROSS-CUTTING, WE'RE GOING TO BE LOOKING AT ACUTE AND SERIOUS ILLNESS AND CONDITIONS THAT CUT ACROSS ALL AGES, AND, AGAIN, WE WANT TO THINK ABOUT THAT IN TERMS OF WHERE DOES THAT PLACE THE CAREGIVER ALONG THE LIFE COURSE, AS WELL AS THE PERSON WHO IS RECEIVING CARE. IN PLENARY 5 WE'RE GOING TO LOOK AT CHRONIC CONDITIONS AND DEMENTIA IN PARTICULAR THAT IMPACT ADULTHOOD AND OLD AGE. AND, AGAIN, HERE WE HAVE FAMILIES AT DIFFERENT LIFE COURSE -- DIFFERENT STAGES OF GOING TO SEE ALSO, AND WE HEARD YESTERDAY, WE HAD YOUNGER PEOPLE ALSO CARING FOR PEOPLE IN ADULTHOOD AND OLD AGE. WE WANT TO THINK ABOUT HOW -- WHERE ONE IS IN THE LIFE COURSE AFFECT THE KIND OF CARE ONE NEEDS AS WELL AS WHAT KINDS OF DEMANDS IT PUTS ON THE FAMILY CAREGIVER. SO SOME OF THE QUESTIONS WE'RE GOING TO BE ABLE TO LOOK AT BY HAVING THIS VERY IMPORTANT ALL-IN APPROACH AND ACROSS THE LIFE COURSE PERSPECTIVE THAT THIS UNIQUE CONFERENCE BRINGS IS WHAT IS SAME AND WHAT IS DIFFERENT WHEN CARING AT PERSONS ALONG DIFFERENT POINTS OF THE LIFE COURSE, WHAT ARE CUMULATIVE AFFECTS OF MULTIPLE CAREGIVING EXPOSURES, ARE THERE DIFFERENTIAL EFFECTS WHEN ASSUMING THE CAREGIVING ROLE AT DIFFERENT POINTS IN THE LIFE COURSE. THESE ARE JUST UNDERLYING QUESTIONS TO CONSIDER. AND THEN REFLECTING UPON THE WONDERFUL PANELISTS AND LOOKING AT THEIR SLIDES IN ADVANCE, THESE ARE SOME OF THE QUESTIONS THAT CAME TO MY MIND THAT I'D ASK YOU TO THINK ABOUT. WHAT DO WE KNOW AND WHAT DO WE NEED TO KNOW TO CLOSE THE GAPS THAT WE REALIZE ARE OCCURRING THROUGHOUT OUR RESEARCH TO POLICY TO PRACTICE TO EDUCATION. HOW DO WE TRANSFORM EDUCATION AND PREPARE A WORKFORCE TO EFFECTIVELY ENGAGE AND SUPPORT DIVERSE POPULATIONS, WHAT IS THE EVIDENCE THAT OUR HEALTH PROVIDERS AND STUDENTS NEED AND ADVOCACY GROUPS NEED TO SUPPORT FAMILIES? WHAT CAN WE RECOMMEND TO NINR IN TERMS OF RESEARCH DIRECTIVES TO MAKE A DIFFERENCE? AND THEN THE BIG QUESTION TO ME, AND MAYBE WE'LL HAVE AN OPPORTUNITY TO DISCUSS THIS, WHOSE RESPONSIBILITY IS IT ANYWAY? WHAT IS THE BALANCE BETWEEN @FAMILIAL AND SOCIETAL RESPONSIBILITY IN ASSURING THAT PEOPLE WHO NEED HELP GET THE HELP THAT THEY NEED? WHAT'S THE RESPONSIBILITY OF OUR HEALTH AND HUMAN SERVICE SYSTEMS IN SUPPORTING FAMILIES, AND THEN WHAT ARE THE ETHICAL CONSIDERATIONS IN CHANGING THE HEALTH CARE SYSTEM THAT ONLY LOOKS AT SINGLE INDIVIDUALS. SO WITH THAT, WHAT I'D LIKE TO DO IS INTRODUCE OUR PANEL 3. IT IS MY PLEASURE TO INTRODUCE THE MODERATOR FOR OUR FIRST PLENARY, DR. JOANNE WOLFE. DR. WOLFE IS THE DIVISION CHIEF OF PEDIATRIC CARE IN PALLIATIVE CARE AT THE DANA-FARBER CANCER INSTITUTE AND SHE'S ALSO THE DIRECTOR OF PEDIATRIC PALLIATIVE CARE AT BOSTON CHILDREN'S HOSPITAL, ALSO AN ASSOCIATE PROFESSOR OF PEDIATRICS AT HARVARD MEDICAL SCHOOL. DR. WOLFE'S PRIMARY INTEREST IS RELATED TO ELICITING CHILD REPORTED OUTCOMES USING INTERNET-BASED TECHNOLOGY AMONG CHILDREN WITH ADVANCED CANCER. SHE'S INVOLVED IN ADDITIONAL STUDIES ALSO ASSESSING PEDIATRIC PALLIATIVE CARE OUTCOMES. SO WITH THAT I'D LIKE TO INVITE DR. WOLFE AND THE ESTEEMED PANELISTS TO COME TO THE STAGE NOW. THANK YOU. [APPLAUSE] >> THANK YOU, DR. GITLIN. GOOD MORNING TO EVERYONE. WELCOME TO THE PLENARY ON CAREGIVING RESEARCH FOCUSED ON REALLY INFANTS, CHILDREN, TEENS AND YOUNG ADULTS. IT'S REALLY AN HONOR FOR ME TO BE HERE TODAY. SO AS WE EMBARK ON THIS PANEL, I THINK WE HAVE TO ASK THE QUESTION, WHAT IS IT LIKE TO BE THE PARENT OF A CHILD WHO IS AT RISK OR SERIOUSLY ILL. FOR MYSELF, EVEN AS A PEDIATRIC ONCOLOGIST AND PALLIATIVE CARE PHYSICIAN, IT WAS SIMPLY HARD TO IMAGINE, THAT IS UNTIL MY OWN CHILD GOT SICK, WHEN HE WAS IN HIGH SCHOOL. HE HAD FOUR MONTHS OF DEBILITATING FEVERS, OF UNKNOWN CAUSE, MULTIPLE LABS AND DIAGNOSTIC TESTS, LONG PERIODS OF WAITING AND WAITING, AND NOT REALLY KNOWING WHAT WILL BE, LIVING WITH UNCERTAINTY, MONTHS AND MONTHS OF HIGH DOSE STEROIDS, AND ALL ITS SIDE EFFECTS, TRANSITIONING TO EXPERIMENTAL THERAPY, MISSING SCHOOL, MISSING WORK, AND MISSING LOTS AND LOTS OF SLEEP. AND YET WE WERE SO, SO FORTUNATE. MY SON DID WELL, GOT HEALTHY AND BACK ON TRACK, AND WE WERE A MEDICAL FAMILY. WELL CONNECTED AND EXTREMELY WELL SUPPORTED. SO NOW I KIND OF UNDERSTAND, AND STILL DID NOT HAVE TO CONTEND WITH THE MORE TYPICAL EXPERIENCE FOR FAMILIES, AS THEY ENTER THE HEALTH CARE SYSTEM BEING MEDICALLY NAIVE, AND EVEN ILLITERATE. SEVERAL ARE SOCIOECONOMICALLY VULNERABLE, SOME WITH PREEXISTING PSYCHOLOGICAL VULNERABILITIES, ALMOST ALL WITH THEIR CHILD'S WELL BEING HELD AT THEIR HIGHEST POSSIBLE PRIORITY, THEIR BELOVED CHILD. THUS, STUDYING PARENT AND GUARDIAN CAREGIVER NEEDS IS CRITICALLY IMPORTANT, AND YET HIGHLY COMPLEX. AS DELINEATED BY THE AMERICAN PSYCHLOGICAL ASSOCIATION, THERE ARE NUMEROUS CHALLENGES. THINKING ABOUT THE CAREGIVERS THEMSELVES, WHO ARE THEY? THEY ARE MOTHERS, FATHERS. THEY ARE GUARDIANS, GRANDPARENTS, FOSTER PARENTS. OFTEN VERY YOUNG. OFTEN WITHOUT A LOT OF RESOURCES IN PLACE. THERE ARE PROBLEMS OF SMALL COHORTS. WE KNOW THAT THOUGH PEDIATRIC ILLNESS IS -- EVERYDAY ILLNESS IS COMMON, CHRONIC ILLNESS THANKFULLY IS RARE. TO STUDY THESE CHILDREN IS HARD, TO DEVELOP A LARGE COHORT AND THEN UNDERSTAND THE IMPACT ON THEIR FAMILY CAREGIVERS. THEY DIFFERENT FROM THE ISSUES RELATED TO CAREGIVERS OF, FOR EXAMPLE, LOVED ONES WITH DEMENTIA. AND OF COURSE THERE ARE NUMEROUS CHILD-SPECIFIC FACTORS. AGE AND DEVELOPMENTAL STAGE OF THE CHILD, THAT MAKE CAREGIVING BURDENS QUITE DIFFERENT FOR CAREGIVERS OF AN ILL INFANT, FOR EXAMPLE, OR FOR AN ILL TEENAGER OR YOUNG ADULT. THE DEGREE OF PHYSICAL IMPAIRMENT AND ITS CHRONICITY, EMOTIONAL DISTRESS, OR MENTAL ILLNESS, THE CHILD'S SOCIAL AND COGNITIVE FUNCTIONING, EDUCATIONAL ABILITIES, AND SCHOOL PLACEMENT. AND OF COURSE, THERE ARE COMMUNITY-SPECIFIC FACTORS THAT MAKE IT DIFFICULT AND DIFFERENT FOR CAREGIVERS IN DIFFERENT PLACE WHO IS MAY FACE SIMILAR STRESSES. FOR EXAMPLE, THE SOCIAL VALENCE OF A CHILD'S CONDITION, THINK WHAT HAPPENS WHEN A CHILD IS DIAGNOSED WITH CANCER AND OFTEN HAS A COMMUNITY MOBILIZED, COMPARED TO A CHILD WHO MAY HAVE ADVANCED NEUROLOGICAL IMPAIRMENT AND CEREBRAL PALSY AND YET THERE'S NOT AN OUTCRY FOR THE NEEDS OF THOSE CHILDREN. THE AVAILABILITY OF SOCIAL SUPPORT FROM THE COMMUNITY, FAMILIES, INTEREST AND ACCESS TO SPIRITUAL SUPPORT, THE PRESENCE OF EDUCATIONAL SUPPORTS IN THE SCHOOL AND OF COURSE AS WE JUST HEARD PRACTICAL RESOURCES AT HOME. THERE'S HIGHLY SPECIALIZED CARE OF MANY OF THESE CHILDREN, AND YET THEY DON'T NECESSARILY LIVE IN CLOSE PROXIMITY TO THE HEALTH CARE FACILITIES THAT DELIVER THEIR CARE. SO THERE ARE NUMEROUS CHALLENGES. HOWEVER, TODAY WE'LL HEAR FROM THREE HIGHLY SUCCESSFUL INVESTIGATORS WHO HAVE CIRCUMVENTED THESE CHALLENGES AND HAVE CONTRIBUTED GREATLY TO ADVANCING THE SCIENCE OF CAREGIVING FOR INFANTS, CHILDREN, TEENS AND YOUNG ADULTS. SO I'M DELIGHTED TO WELCOME OUR FIRST PRESENTER. DR. J. NEIL HENDERSON IS A MEDICAL ANTHROPOLOGIST WHO DOES BICULTURAL ANALYSES OF HEALTH AND DISEASE FROM A CROSS-CULTURAL PERSPECTIVE AMONG AMERICAN INDIAN, ALASKA NATIVE POPULATIONS, SPANISH SPEAKERS, AND AFRICAN-AMERICAN POPULATIONS. HE HAS REALLY CROSSED THOSE BARRIERS WELL. IN ADDITION TO HIS ROLE AT PROFESSOR, DR. HENDERSON IS THE EXECUTIVE DIRECTOR OF THE MEMORY KEEPERS MEDICAL DISCOVERY TEAM ON HEALTH DISPARITIES AT THE UNIVERSITY OF MINNESOTA MEDICAL SCHOOL, HIS INTEREST AREAS INCLUDE CULTURAL, SOCIOECONOMIC, AND POLITICAL FACTORS IN HEALTH STATUS, NEWLY EMERGING CHRONIC DISEASES, DEMENTING DISEASE AND CHRONIC DISEASE CAREGIVING. DR. HENDERSON DEVELOPED THE EARLIEST ETHNIC-SPECIFIC ALZHEIMER'S SUPPORT GROUPS FOR AFRICAN-AMERICAN AND LATINO COMMUNITIES. SO PLEASE JOIN ME IN WELCOMING DR. HENDERSON. [APPLAUSE] [SPEAKING IN A FOREIGN LANGUAGE] I SAID HELLO IN THE CHOCTAW LANGUAGE, AND ASKED HOW YOU WERE, AND ALSO STATED MY NAME AND I'M AN OKLAHOMA CHOCTAW. I SAY THAT BECAUSE THE DATA THAT I WILL PRESENT TODAY COMES FROM A RESEARCH PROJECT FUNDED BY THE NATIONAL INSTITUTE OF MINORITY HEALTH AND HEALTH DISPARITIES, THAT WAS DONE IN THE OKLAHOMA CHOCTAW NATION. AND THIS SLIDE SET HAS BEEN REVIEWED BY THE TRIBAL HEALTH BOARD, AND IRB, AND HAS BEEN APPROVED FOR PUBLIC USE. THIS IS THE AUTHOR SET THAT WAS INVOLVED IN THIS PROJECT. IT DOES INCLUDE BESIDES MYSELF PAT MAYER AT THE BOTTOM WHO IS A TRIBAL MEMBER ALSO, AND WAS INVOLVED IN HELPING TO IDENTIFY AND COMMUNICATE WITH RESEARCH PARTNERS. SO WHAT I WANT TO LOOK AT TODAY AS YOU CAN TELL FROM THE TITLE IS THE INTENSIVE CAREGIVING THAT TAKES PLACE FOR PARENTS THAT HAVE KIDS WITH TYPE 1 DIABETES. AND WE'RE GOING TO LOOK AT NOT THE PATIENT, NOT THE ONE THAT HAS THE CHART, BUT SORT OF THE SATELLITE OF THOSE AROUND THAT PERSON, IN THIS CASE A CHILD. WE'RE GOING TO ASK QUESTIONS ABOUT WHAT'S THE CULTURAL CONSTRUCTION OF THIS DISEASE. THE WAY TO ASK THAT QUESTION IS TO EXPLORE WHAT ARE THE PARENTS' LIVED EXPERIENCE OF DEALING WITH THE CHILD THAT HAS TYPE 1 DIABETES. AND WHILE THE PARENT DOES NOT HAVE THE CONDITION, OF COURSE, IN MANY CASE THE FORECAST FOR OUR LAST SLIDE IS THAT THEY LIVE IN MANY WAYS LIKE THEY DO. SO THE RESEARCH QUESTION HERE IS WHAT ARE THE BEHAVIORAL STRATEGIES THAT ARE ASSOCIATED WITH MITIGATING PARENTAL DISTRESS AT THE INTERFACE OF THE PARENT AND CHILD CAREGIVING ACTIVITIES? LETTER A IS NOT FROM AN ACCOUNTING VIEWPOINT. THAT IS WE DO HAVE QUANTIFIABLE STUDIES, DEPRESSION, SLEEP DISTURBANCE, BUT HERE WE'RE GOING TO ASK MORE THE QUESTION WHAT IS BEHAVIORALLY AND EMOTIONALLY DOMINANT FOR THE PARENTS DAY AFTER DAY AFTER DAY. IT -- YOU'LL SEE A MICROANALYSIS OF THE CAREGIVING THE PARENTS ENGAGE IN. WE HAVE MORE THAN 100 HOURS OF INTENSIVE INTERVIEWING. YOU SEE THE PHRASE EVOLVING INTERVIEW, THAT MEANS OVER THE 4 1/2 YEARS OF THE STUDY, EACH HOUSEHOLD THAT WAS PARTICIPATING IN THE STUDY WAS INTERVIEWED THREE TO FIVE DIFFERENT TIMES OVER THOSE 4 1/2 YEARS, SO WE THEN HAVE THE AGING OF THE CHILD, THE PHYSICAL GROWTH OF THE CHILD, SOMETIMES THROUGH PUBERTY, ALL OF THOSE FACTORS AFFECT THE MANAGEMENT OF THE DIABETES. AND THE PARENTS THEN CORRESPONDING EFFORTS TO EVOLVE ALONG WITH THE CHILD, AND MAINTAIN COPING. WE THINK THIS IS IMPORTANT, FIRST OF ALL, BECAUSE TYPE 1 DIABETES IN A CHILD, OR ANYONE, IS POTENTIALLY FATAL. AND WE'LL BE LOOKING AT THE NIGHTTIME HYPOGLYCEMIC EFFECTS THAT CAN HAPPEN THAT ARE VERY SCARY FOR THE PATIENT, FOR THE PARENTS. SOMETIMES THE PARENTS WILL AS A COUNTER-MEASURE LOAD THEM WITH HIGHER GLUCOSE LEVELS THAN YOU MIGHT WANT IN THE EVENING SO OVERNIGHT BY THE TIME THEY WAKE UP IN THE MORNING THEY ARE MANAGEABLE NUMBERS. THE PROBLEM WITH THAT IS THERE'S SOME LITERATURE SUGGESTING THAT IF THAT'S DONE CHRONICALLY, THAT THE HYPERGLYCEMIC CONDITION WITH INTRODUCE THE HIGHER RISK FOR VASCULAR TYPE DEMENTIA. HERE WE WANT TO CREATE A NEW SEMANTIC CUE FOR EASY IDENTIFICATION AND EXTREME PARENTAL DISTRESS THAT WE'RE CALLING DIABETES BY PROXY. WE HEARD YESTERDAY A NUMBER OF COMMENTS ABOUT THE IMPORTANCE OF NAMING A CONDITION, AND I THINK THERE WILL BE SOME EFFECT HERE TOO. WE THINK THERE'S UTILITY FOR THIS IN BEHAVIORAL MEDICINE, WHICH FOR ACROSS INDIAN COUNTRY, THROUGH INDIAN HEALTH SERVICE AND INDEPENDENT TRIBES, BEHAVIORAL MEDICINE IS THE CODE WORD FOR MENTAL HEALTH OR PSYCHOLOGICAL SERVICES. AND THESE PARENTS I THINK REALLY COULD BENEFIT FROM EXPERT CARE. IT'S NICE THAT PEOPLE IN A MEDICAL CLINIC WILL RECOGNIZE THAT THEY HAVE STRESS AND GIVE THEM SOME ADVICE LIKE GET SOME REST, BUT EXPERT CARE, FOR MENTAL HEALTH ISSUES, IS A DIFFERENT ANIMAL ALTOGETHER. SO WE'RE GOING TO JUMP IN HERE NOW. I WANT TO SHARE WITH YOU A MOTHER WHO IS TALKING ABOUT HER OWN CHILD, AND AN EVENT THAT WAS NEARLY KILLED, THE CHILD, AND THEN WE'RE GOING TO DISSECT THAT AND LOOK AT HOW WE ARRIVED AT THIS CONCEPT OF DIABETES BY PROXY. THIS IS THE FIRST, THERE'S FOUR SLIDES. THIS IS THE FIRST ONE. AND THIS IS A CASE WHERE I'M GOING TO READ THIS SO WE'LL ALL COGNITIVELY BE LITERALLY ON THE SAME PAGE. WE WERE IN BED ASLEEP IN THE MIDDLE OF THE NIGHT, HIS BLOOD SUGAR WASN'T SEVERELY LOW. HIS PUMP QUIT WORKING DURING THE DAY HIS BLOOD SUGAR HAD GOTTEN SO HIGH DURING THE DAY THE METERS COULDN'T EVEN READ IT. WE FINALLY GOTTEN IT DOWN TO AROUND 590 OR 580 WHEN I WENT TO BED, IT DROPPED DOWN INTO THE MID-30s IN LESS THAN AN HOUR. IT JUST THREW HIS BODY INTO LIKE A SHOCK. HE WOKE UP BECAUSE HIS BODY STARTED JERKING LIKE HIS LIMBS STARTED JERKING, HEAD WAS JERKING, YOU GO TO A TUNNEL VISION. HE COULDN'T SEE. HE SCREAMED. SO WE, MEANING THE PARENTS, WOKE UP TO LIKE A BLOOD CURDLING SCREAM IN THE MIDDLE. NIGHT. AND THEY CAN'T TALK AND TELL YOU WHAT'S WRONG. IT'S SCARY AS A PARENT. HE'S JERKING ON THE BED. YOU KNOW HE'S TRYING TO TALK BECAUSE YOU HEAR NOISES, THEIR MOUTH IS MOVING. THANK GOD I'M MARRIED BECAUSE I'M ABLE TO HAVE SOMEBODY WITH HIM WHILE I RUN TO GET SUPPLIES. SUPPLIES WITHIN THE HOUSE. YEAH, I RUN AND GET SUPPLIES BECAUSE I'M THE LEVEL-HEADED ONE, AS SHE LAUGHS. MY HUSBAND STAYED THERE LIKE TRYING TO TALK TO HIM AND KEEP HIM CALM, MAYBE A SOOTHING VOICE. I TRY TO STAY CALM. I WAS TOO TERRIFIED TO LET HIM BE IN BED THE REST OF THE NIGHT. WE HAD A BIG 12-YEAR-OLD KID IN BETWEEN US. AT WORK THE NEXT DAY, I BROUGHT HIM WITH ME. I COULD NOT LET HIM OUT OF MY SIGHT. I MEAN I WANTED HIM RIGHT THERE WITH ME. IF I WENT UPSTAIRS, HE WENT UPSTAIRS WITH ME E THAT NIGHT WHEN HE DID GO TO BED IN HIS OWN BED, I CRIED. 24 HOURS LATER I WENT TO BED AND I CRIED. I'M THANKFUL IT JUST WASN'T ANY WORSE THAN IT WAS BUT IT JUST, YOU KNOW, I FELL TO PIECES AND CRIED. I DID MY FALLING APART LATER. STAY CALM TO KEEP THE PERSON CALM, FALL APART AT A LATER TIME. THAT'S WHAT A LOT OF PARENTS DO. SO LET'S NOW LOOK AT THIS AND SEE WHAT'S GOING ON HERE IN TERMS OF MITIGATING STRATEGY. YOU CAN IMAGINE THIS IS EXTREMELY FRIGHTENING, EXTREMELY STRESSFUL. AND SO NUMBER ONE, THESE PARENTS ASSEMBLE A SET OF MICROBEHAVIORAL SURVEILLANCE TECHNIQUES TO CONSTANTLY MONITOR THE CHILD'S CONDITION. THEY WISH THEY COULD BE INSIDE THEIR SKIN, THE CHILD'S SKIN, BUT THEY CAN'T. ONE STRATEGY IS REARRANGE THE HOUSEHOLD LIVING SPACE AND THAT MEANS THE ENTIRE FAMILY MAY HAVE TO BE MOVED AROUND LIKE PUZZLE PARTS BUT THEY WANT THE CHILD WITH DIABETES TO BE AS CLOSE TO THE PARENTAL BEDROOM AS POSSIBLE SO THAT IF THERE ARE EVENTS LIKE THAT THAT HAPPEN, THEY CAN POSSIBLY PREEMPT OR AT LEAST RESPOND TO IT IN A QUICK WAY. WHY IS IT NECESSARY TO MOVE CHILDREN'S BEDROOMS CLOSER TO THE PARENTS? TURNS OUT THAT'S PART OF AN AMERICAN CULTURAL NORM. THE HYPER INDIVIDUALISM WHICH IS FOUNDATIONAL TO AMERICAN CULTURE CAUSES US TO SEPARATE FROM THE -- SEPARATE THE CHILDREN FROM THE PARENTS, AS SOON AS POSSIBLE AFTER BIRTH, TO INDIVIDUAL ROOMS WHERE THEY LIVE SEPARATELY FROM THE PARENTS, EVEN THOUGH IN THE SAME HOUSE. THAT'S JUST ALMOST STANDARD OPERATING BEHAVIOR IN THIS SOCIETY. SO IT MEANS THAT WE'RE GOING TO FOR INFANTS AND TODDLERS HAVE THEM SPEND QUITE A BIT OF TIME IN THE CAGE IN THEIR EARLY YEARS. WE SMOKE SCREEN THAT AND CALL THEM CRIBS AND PLAY PENS. THEY ARE A HUMAN PRIMATE CAGE. AND SO OBVIOUSLY THERE'S SOME GOOD REASONS. YOU DON'T WANT THEM WANDERING AROUND OUT OF THE HOUSE AND OUT INTO THE STREETS, ET CETERA. BUT THERE'S A DEEPER QUESTION. WHY IS IT THAT WE HAVE TO EMPLOY CAGES TO DO THAT? I'LL EXPLAIN THAT IN JUST A MINUTE. SO THESE FACTORS REINFORCE EARLY LIFE EXPERIENCE ABOUT INDIVIDUALISM, AND BY THE WAY BY CONTRAST THERE ARE OTHER PLACES AROUND THE WORLD AND WITHIN THIS COUNTRY IN WHICH INTERDEPENDENCY IN FAMILIES IS EMPHASIZED RATHER THAN SEPARATE INDIVIDUALISM. MITIGATING STRATEGIES AGAIN, NUMBER 2, THE MOTHER TYPICALLY ENGAGES IN PURPOSEFUL SLEEP DISRUPTION. SET AN ALARM OR MENTAL ALARM AND GET UP AND CHECK THE CHILD MULTIPLE TIMES THROUGH THE NIGHT INCLUDING POSSIBLE STICKS. NUMBER THROUGH, THEY WILL REMOVE AS MANY SOUND BARRIERS SEPARATING PARENTS FROM CHILD'S LOCATION AS POSSIBLE, SIMPLY DOORS, THE CHILD'S DOOR IS LEFT OPEN, THE PARENTS' BEDROOM DOOR IS LEFT OPEN, NEVER CLOSED. SO WHAT THIS DOES IS, NUMBER FOUR, DEVELOP AN AUDITORY COGNITIVE MAP FOR REMOTE SENSING. AND HERE IS HOW THAT WORKS. THE PARENT IS NOW ASLEEP IN THEIR BEDROOM, BUT EVEN WHILE ASLEEP STILL LISTENING FOR THE SMALLEST NOISE THAT INDICATES THERE MIGHT BE SOME PROBLEM. IF THERE IS A SOUND, THEY WILL INTERPRET THAT AS THEM PLAYING GAMES ON THE COMPUTER OR IS IT ACTUALLY DIABETES RELATED. LETTER C, IF THEY ARE CONSIDERED DIABETES RELATED THEN THE MOTHER BEGINS TO LISTEN ACUTELY FOR NOISES INDICATING THE CHILD IS TAKING THE CORRECT SELF-CARE STEPS AND SHE MENTALLY CHECKS THIS OFF. THIS IS FOR A CHILD OLD ENOUGH TO BEGIN TO MANAGE THIS. BUT ALSO, EVEN LISTENING TO WHAT'S NOT THERE. SO WHILE LYING IN THE DARK, LISTENING TO NOISES ACROSS THE HALL, THERE'S A TRACKING OF THE TIME INTERVAL BETWEEN STEPS 1, 2, 3, 4 OF THE SELF CARE. AND IF IT GOES TOO LONG, THEN MOM POPS UP AND NOW SHE IS AWAKE AND STANDING. NUMBER 5, THERE WILL BE OFTEN RESTRATEGIZED FAMILY DYNAMICS, PART IS THE MOVEMENT AROUND THE HOUSEHOLD, AND AS WE KNOW THE RELATIONSHIP FACTORS AMONG ALL OF THE CHILDREN AND ALL THE OTHER SIBLINGS CAN BE CHANGED, AND NEEDS TO BE CAREFULLY DONE. AVOIDANCE REDUCTION OF THE MARITAL RELATION DUE TO OPEN DOORS AND DISTRACTION CAME UP IN THE INTERVIEWS. SO FAR WE'VE TALKED JUST ABOUT THE NIGHTLY ROUTINE. NOW PUT THIS TOGETHER, BEING THEIR CHILDREN, WE'RE CALL DIABETES BY PROXY, THESE ARE LOVING, DEDICATED PARENTS. THEY HAVE BECOME MIRRORS TO THE CHILD'S LIFE. YOU SEE THE LETTERS OF ALL THE THINGS THEY HAVE TO DO TO KEEP TRACK OF NOT JUST DAILY BUT ON ALMOST A MOMENT BY MOMENT BASIS. THEY LIVE AS IF THEY HAVE TYPE 1 DIABETES. SO THIS PRODUCES A KIND OF CAREGIVING THAT'S HYPERVIGILANT, LOTS OF COMPASSION. THEY WANT TO LIVE THE DIABETES FOR THE CHILD, WISH THEY COULD BE IN THE BODY. NUMBER 5, THEY CAN'T. IT'S A FRUSTRATING THING. THEY TRY TO LOOK AT BEHAVIOR AND SAY IS THIS A SIGN THERE'S SOME GLUCOSE MANAGEMENT NEEDED? OR FINALLY RESORTING TO A STICK. PARENTS HAVE A SPECIAL CAREGIVING ROLE. IN THIS CASE IT'S NOT JUST SIMPLY TASKS, IT'S NOT JUST SIMPLY MAKING SURE THEY'VE GOT SUPPLIES. BUT THEY ARE LITERALLY ENGAGED IN A DEATH PREVENTION DUE TO THE LETHALITY FACTOR OF TYPE 1 DIABETES. THEY HAVE TO BE DILIGENT. DILIGENCE AND CAREGIVING CAN LEAD TO RISK OF BURNOUT AND ULTIMATELY CAREGIVER SYSTEM COLLAPSE. NUMBER 10, WE'RE WORRY IN THE INTERVIEWS PEOPLE DO NOT PERCEIVE THAT THE CLINICIANS DEALING WITH THE CHILD'S TYPE 1 DIABETES ARE VERY TUNED IN TO THE FACT THAT THE PARENTS ARE EXTREMELY STRESSED. KNOW THEY HAVE STRESS, YES. READ THE ARTICLES ABOUT IT, YES. DOING SOMETHING ABOUT IT IS A DIFFERENT STORY. SO, HERE THE CAREGIVING IS INTENSIFIED, NOT ONLY BY THE DISEASE BUT BY AMERICAN CULTURAL KINSHIP NORM. IT'S CALLED THIS. POST MARITAL NEOLOCAL RESIDENCE. WHEN A COUPLE GETS MARRIED, THEY LIVE WHEREVER THE PARENTS DON'T IS WHAT IT MEANS. THE EFFECT OF THAT IS THAT THE ACCUMULATION OF RELATIVES AND POTENTIAL CAREGIVERS IN A HOUSEHOLD IS THWARTED BY NOT BRINGING PEOPLE, MORE PEOPLE, INTO THE HOUSEHOLD BY MARRIAGE, WHICH IS ANOTHER -- TWO OTHER SYSTEMS, MATRILOCAL AND PATRILOCAL, ADDING MORE PEOPLE, THAT CAN ADD UP TO MORE POSSIBLE CAREGIVERS. IMAGINE JUST FOR A MINUTE IF CAREGIVING TASK DIFFUSION IN THIS CULTURE WAS CHANGED IN A WAY THAT MARRIAGES BROUGHT PEOPLE TO THE HOUSEHOLD RATHER THAN AWAY. HOW WOULD THAT CAREGIVING THEN BE BETTER DIFFUSED ACROSS A LARGER NUMBER OF PEOPLE, WHETHER FOR YOUNG KIDS OR WHETHER FOR OLDER INDIVIDUALS THAT NEED HELP? SO THIS NEAR DEATH EXPERIENCE OF THE CHILD CAN PRECIPITATE A VERY COMPASSIONATE AND STRONG ANXIOUS RESPONSE IT'S FROM PARENTS. THEY WANTS TO BE THEIR CHILD. THEY CAN'T DO IT. IN THE SHORT TERM THIS IS GOOD FOR THE CHILD. THIS DIABETES BY PROXY IS NOT A PATHOLOGICAL CONDITION. IT IS AN ALERT TO PEOPLE WORKING WITH THE FAMILY. SO THE PROBLEM IN THE LONG RUN WE MIGHT HAVE CAREGIVER BURNOUT. THE LOVING DEDICATED PARENTS TRY TO BE THE CHILD BUT THEY BECOME SORT OF HIDDEN PATIENTS. THE CAREGIVER TASKS ARE OVERSIMPLIFIED, STRESSED, LOSING SLEEP. THAT'S CORRECT. BUT THAT'S ALSO A HUGE GLOSS THAT CONCEALS A LOT OF DETAILS WE WERE JUST GOING OVER. SO WHO IS THE PATIENT IS THE WRONG QUESTION. WHO ARE THE PATIENTS? IT'S THE CHILD AND THE PARENTS THAT HAVE TYPE 1 DIABETES BY PROXY. THANK YOU. [APPLAUSE] >> THANK YOU, DR. HENDERSON, FOR YOUR REMARKS. WE'LL RESERVE QUESTIONS AFTER ALL THE SPEAKERS. I'D LIKE TO INTRODUCE DR. PAMELA HINES, DIRECTOR OF NURSING SCIENCE, PROFESSIONAL PRACTICE AND QUALITY FOR CHILDREN'S RESEARCH INSTITUTE AT CHILDREN'S NATIONAL HEALTH SYSTEM, A PROFESSOR OF PEDIATRICS AT GEORGE WASHINGTON UNIVERSITY SCHOOL OF MEDICINE AND HEALTH SCIENCES, DR. HINDS HAS LED RESEARCH RELATED TO THE PEDIATRIC CANCER EXPERIENCE AS WELL AS END OF LIFE COMMUNICATION AND DECISION MAKING, CURRENTLY SERVES ON THE NATIONAL ACADEMY SCIENCES ENGINEERING AND MEDICINE ROUNDTABLE ON QUALITY CARE FOR PEOPLE WITH SERIOUS ILLNESS, AND IS THE EDITOR IN CHIEF OF THE JOURNAL "CANCER NURSING," AN INTERNATIONAL CANCER JOURNAL. PLEASE JOIN ME IN WELCOMING DR. PAMELA HINDS. [APPLAUSE] >> GOOD MORNING. THANK YOU SO MUCH FOR YOUR INTEREST IN THIS TOPIC. I'M INCREDIBLY GRATEFUL TO DR. GRADY FOR LEADING THE DEVELOPMENT OF THIS ENTIRE SUMMIT AND FOR OUR SESSION, I'M VERY GRATEFUL TO THE LEADERS OF THE OFFICE OF END OF LIFE RESEARCH AT NINR. THEY HAVE MADE SUCH A DIFFERENCE IN OUR NATION. I BRING YOU WARM GREETINGS FROM CHILDREN'S NATIONAL, THE NATION'S ONLY FREE STANDING PEDIATRIC HOSPITAL, 300 STRONG, AND GREETINGS FROM THE STAFF RELATED TO PEDIATRIC END OF LIFE AND PALLIATIVE CARE AND RESEARCH. WE SPAN SEVEN STATES, THE DISTRICT AND THREE COUNTRIES. I HAVE NOTHING TO DISCLOSE RELATED TO CONFLICTS OF INTEREST, I AM PROFOUNDLY GRATEFUL TO THE FUNDERS OF OUR RESEARCH THAT I'LL BE SHARING WITH YOU TODAY. AND I AM ALSO INDEBTED TO THESE AMAZING COLLEAGUES WHO HAVE HAD THE COURAGE TO TAKE PART IN THIS KIND OF RESEARCH. DURING OUR MOMENTS TOGETHER, MAY I PLEASE TRY TO SHARE WITH YOU THE EVOLUTION OF A CONSTRUCT THAT HAS BEEN IDENTIFIED AND NAMED BY PARENTS OF SERIOUSLY ILL CHILDREN, THAT CONSTRUCT BEING, BEING A GOOD PARENT TO MY VERY ILL CHILD, AND MAY I ALSO SHARE WITH YOU A METHOD WE'VE IMPLEMENTED TO TRY TO DOCUMENT THE RISKS, THE BENEFITS, FOR ALL THE PARTICIPANTS IN END-OF-LIFE RESEARCH. SO FOR A LONG PERIOD OF TIME I'VE HAD THE PLEASURE AND PRIVILEGE OF STUDYING CHILDREN WHO HAVE INCURABLE ILLNESSES, AND DURING THAT TIME WE'VE BEEN ABLE TO DOCUMENT THEIR ABILITY FROM VERY YOUNG AGES, 5 YEARS OF AGE AND UP, TOXICITIES THAT ARE SECONDARY TO THEIR CANCER TREATMENT AND SYMPTOMS THAT THEY EXPERIENCE WHILE THEY ARE RECEIVING EXPERIMENTAL DRUGS WHEN THEY KNOW THAT THEIR DISEASE IS NOW INCURABLE. ALSO, IDENTIFYING SYMPTOM CLUSTERS, CHILDREN WHO ARE HIGH SUFFERERS, CHILDREN WHO ARE LOW SUFFERERS, AND THE CLINICAL QUESTION THAT HELPS US TO IDENTIFY WHICH GROUP A CHILD FALLS INTO. ALSO DOCUMENTING WISHES AND HOPES OF CHILDREN AND ADOLESCENTS RECEIVING TREATMENT FOR CANCER, DURING TREATMENT AND ALSO AT END OF LIFE. AND ALSO IDENTIFYING THEIR FACTORS THAT THEY REPORT INFLUENCING THEIR OWN END OF LIFE DECISION MAKING. WHAT I HADN'T COUNTED ON WAS THAT CHILDREN WITH VERY SERIOUS ILLNESSES WHO KNOW THAT THEY ARE NOW DYING WOULD ASK ME, PLEASE, WOULD YOU STUDY MY PARENTS TOO, I'M VERY WORRIED ABOUT THEM. SO HERE WE HAVE CHILDREN WHO ARE DYING, NOW TAKING CARE OF THEIR PARENTS. AND IN OUR DEDESCRIPTIVE, WE DOCUMENTED REASONS THEY CHOSE END OF LIFE DECISION ON BEHALF OF VERY ILL CHILD. IDENTIFYING, DESCRIBE, UNDERSTAND, BUT NOT SO THIS FACTOR IN RED, DECIDING AS A GOOD PARENT WOULD, EVEN THOUGH THIS FACTOR WAS THE MOST% FREQUENTLY REPORTED ACROSS ALL OF OUR DEDESCRIPTIVE STUDIES, OVER 84% OF PARTICIPATING PARENTS REPORTING IT. SO IMMEDIATELY WITH NINR SUPPORT WE DEVELOPED A STUDY JUST TO FOCUS IN ON THE CONSTRUCT OF BEING A GOOD PARENT TO A SERIOUSLY ILL CHILD, WITH PARTICIPATING PARENTS WE EXPLAINED DERIVATION OF THIS FACTOR AND WE ASKED THEM THIS QUESTION. PLEASE, WOULD YOU SHARE WITH ME YOUR DEFINITION OF BEING A GOOD PARENT TO YOUR ILL CHILD NOW. AND ACROSS STUDY GROUPS WE WERE ABLE TO INDUCE THIS DEFINITION, SO ACCORDING TO THE PARENTS OF A SERIOUSLY ILL CHILD, A GOOD PARENT IS ONE WHO IS ADEQUATELY KNOWLEDGEABLE ABOUT THE CHILD'S MEDICAL SITUATION, SO THAT THEY CAN HELP MAKING INFORMED MEDICAL CARE DECISIONS. HAS SUFFICIENT STRENGTH TO REMAIN AT THE CHILD'S SIDE, EVEN THOUGH YOU MIGHT PREFER TO BE ELSEWHERE. PROVIDES THE BASICS OF FOOD, SHELTER, CLOTHING AND POSITIVE HEALTH, EVEN AS THE CHILD IS DYING, TEACHES THE CHILD TO MAKE GOOD CHOICES, TO RESPECT AND HAVE SYMPATHY FOR OTHERS AND KNOW THEY WILL NOT BE ALONE, THERE IS A GREATER BEING WAITING FOR THEM. AND FINALLY, TO BE CERTAIN THEIR CHILD KNOWS THAT THE CHILD HAS BEEN WELL LOVED. WE'VE MOVED TO VALIDATE THIS CONSTRUCT, AND ITS DIFFERENT ELEMENTS IN TWO VERY DIFFERENT STUDIES. THE FIRST WAS LED BY DR. TESSIE OCTOBER IN THE PICU WITH PARENTS OF CHILDREN WITH LIFE-THREATENING CONDITIONS BUT NOT FATAL CANCER. WE WERE ABLE TO VALIDATE EVERY ELEMENT OF THE DEFINITION IN HER MUCH MORE ETHNICALLY DIVERSE SAMPLE. PLUS, WE LEARNED SOMETHING QUITE IMPORTANT TO US, AND THAT WAS THAT WHEN THERE WAS A COUPLE BEING INTERVIEWED, THEY HAD DIFFERENT TOP RANKED ELEMENTS OF THE DEFINITION. MOMS IN A COUPLE RANK AS MOST IMPORTANT TO THEM, THAT MY CHILD KNOWS THAT HE OR SHE WAS WELL LOVED. DADS, OR SPOUSES IN THE COUPLE REPORT HAVING RANKED MOST IMPORTANT BEING WELL INFORMED TO HELP MAKE GOOD MEDICAL DECISIONS. WE'VE GONE ON TO VALIDATE THIS CONSTRUCT IN A LARGER STUDY IN PHILADELPHIA WITH A TERRIFIC COLLEAGUE, DR. CHRIS FEWNEW, WITH 200 PARENTS RANK ORDERED THE ELEMENTS, SAME ELEMENTS OF THE CONSTRUCT. AND THE MAJORITY OF PARTICIPATING PARENTS RANKED MY CHILD KNOW ARE HE OR SHE WAS WELL INVOLVED, MAJORITY OF PARTICIPANTS WERE MARRIED WOMEN. BASED ON THAT WE INDUCED A MODEL THAT REPRESENTS PARENTS OF CHILDREN WHO ARE QUITE ILL, MOVING FROM ALL EFFORTS TO CURE THAT CHILD INTO RECOGNIZING THAT THE CHILD WILL NOW NOT BE CURED. AND OVER TIME, WE HAVE BEEN ABLE TO EXPAND THIS MODEL TO INCLUDE WHAT YOU WILL NOTICE NOW. WE ARE STUDYING WITH THE DOTTED LINES, IF WE KNOW HOW TO HELP PARENTS ACHIEVE THEIR DEFINITION OF BEING A GOOD PARENT, COULD WE POSITIVELY INFLUENCE THE HEALTH OF THAT PARENT AND THE WELL-BEING OF A FAMILY DURING THE CHILD'S DYING AND AFTER THE CHILD'S DEATH? COULD WE THERE BY THROUGH END-OF-LIFE RESEARCH DO PREVENTIVE HEALTH FOR THE WELL-BEING OF A FAMILY? IN OUR CURRENTY STUDY ALSO FUNDED BY NINR WE'RE DOING SUBSTANTIVE GROUNDED THEORY BUILDING TOWARDS FORMAL SUBSTANTIVE GROUNDED THEORY. ON YOUR LEFT THREE EXAMPLES OF FIRST LEVEL CODES, TRYING TO SEE THE BIGGER PICTURE, EVEN WHEN NOT LIKING IT. DOING WHAT IS BEST FOR MY CHILD, AND ASKING MYSELF, IS THIS WHAT MY CHILD NEEDS? ALL FIRST LEVEL CODES, MERGED INTO A SECOND LEVEL CODE, PUTTING MY ILL CHILD'S NEEDS ABOVE MY OWN. NOW, THIS IS A CODE THAT IS FROM A VERY SPECIFIC INTERVIEW, WE'RE DOING AN UNUSUAL DEEPER ANALYSIS FOR THIS GROUNDED THEORY APPROACH, IN ADDITION TO DOING TRADITIONAL ANALYSIS, WE'RE LOOKING AT COUPLES ANALYSES. AND SO WHAT I'M GOING TO SHARE WITH YOU NEXT ARE DATA MAPPINGS FROM A COUPLE AS AN EXAMPLE OF WHAT WE ARE FINDING, SO THIS IS A MAP FROM A MOM OF A 13-YEAR-OLD DAUGHTER WHO IS DYING OF CANCER. AND IN THIS MAPPING, YOU'LL NOTICE THAT EVERYTHING CENTRALIZES FOR HER AROUND BEING FULLY PRESENT FOR HER CHILD, BEING TRUSTED TO MAKE GOOD DECISIONS FOR THE CHILD, SENSING WHEN IN FACT SHE HAS DISAPPOINTED OTHERS BY HER DECISION MAKING, BUT NONETHELESS WORKING TO BE FULLY PRESENT FOR HER CHILD WHILE HIDING HER OWN SORROW. AND NOW I SHARE WITH YOU THE DATA MAPPING FROM THE FATHER OF THE VERY SAME DAUGHTER, A CLOSELY MARRIED COUPLE IN THIS MAPPING. NOTICE PLEASE THAT THE FATHER IS CENTRAL FOCUSED ON BEING OPTIMISTIC AROUND HIS DAUGHTER AND SHOWING STRENGTH AROUND HER, BECAUSE HE GATHERS HIS STRENGTH FROM HER AND HE IS CERTAIN SHE GATHERS HER STRENGTH FROM HIM. SO NOW WE ARE QUALITATIVELY INDUCING UP ALL MOMS WITHIN COUPLES AND ALL DADS WITHIN COUPLES, AND WHAT YOU'LL NOTICE IS ACROSS THE MOMS THE CENTRAL ORGANIZING CONSTRUCT IS BEING FULLY PRESENT FOR MY ILL CHILD, REGARDLESS OF THE CIRCUMSTANCES. AND RECOGNIZING THE IMPORTANCE OF BEING TRUSTED TO MAKE GOOD DECISIONS, REALLY VALUING THE SUPPORT FROM OTHERS WHO HAVE NOW RECOGNIZED THE SITUATION FOR WHAT IT IS. ALTHOUGH BEING TROUBLED BY OTHERS WHO CONTINUE TO WANT THEM TO FUNCTION IN ALL THEIR OTHER RESPECTIVE ROLES, WHILE THE CHILD IS DYING. AND FOR THE FIRST TIME, NOW RECOGNIZING THAT THE MOTHER DOES NOT HAVE CONTROL OVER THE CHILD'S ILLNESS. MAY I SHARE WITH YOU NOW THE MAPPING FROM THE FATHERS WITHIN EACH OF THESE COUPLES AND ACROSS THESE COUPLES. NOTICE THAT THE CENTRAL ORGANIZING CONSTRUCT IS PROTECTING MY CHILD, TO BE PRESENT IN ORDER TO PROTECT AND FEELING AS IF THEY ARE CHIEFLY RESPONSIBLE FOR BEING A GOOD ROLE MODEL FOR THE CHILD, FOR THE NUCLEAR FAMILY, FOR THE STAFF, AND FOR FRIENDS, A TREMENDOUS BURDEN OF TRYING TO BE THE ROLE MODEL WHILE LOSING THE CHILD. WE KNOW THAT WE HAVE MUCH WORK LEFT TO DO WITH THESE MAPS. ONE OF COURSE IS TO ASSESS THE COMPLEXITY OF THE MAPS, WHAT MAKES ONE MAP DIFFERENT FROM ANOTHER IS THAT THE TYPE OF CODE, THE NUMBER OF CODES, THE NUMBER OF RELATIONSHIPS THAT ARE DIRECT OR INDIRECT, WE ALSO KNOW THAT IT MUST TAKE THE COUPLE ANALYSIS FURTHER AND COMPARE A COUPLE ANALYSIS WITH A LONG PARENT ANALYSIS AS CLINICAL DATA AND RECENTLY PUBLISHED DATA LEADS US THERE MAY BE CLINICAL APPROACHES. WE NEED TO COMPARE MAPS FROM BEFORE THE CHILD DIES TO AFTER THE CHILD DIES, AS THIS IS OUR STUDY DESIGN IN THE CURRENT RO1. WE ARE, AS YOU CAN SEE, ASKING MUCH OF OUR PARENTS IN ORDER TO BE A PART OF OUR STUDY. AND FOR ALL OF OUR END-OF-LIFE STUDIES OVER THE PAST SEVERAL DECADES, WE HAVE BEEN TRYING TO ASSESS RISK AND BURDEN AND HARM TO OUR PARENTS, AND WE HAVE DEVELOPED THESE THREE INTERVIEW QUESTIONS THAT WE ASK FAMILIES, WITHIN 72 HOURS TO 3 WEEKS AFTER THEY HAVE BEEN A PART OF ONE OF OUR STUDIES, DEPENDING UPON THE NATURE OF THE DESIGN. SO WE PREPARE THEM THAT WE WOULD BE CONTACTING THEM FOR THIS FOLLOW-UP, THAT IT WOULD BE A MEMBER OF OUR TEAM WHO HAS NOT BEEN INVOLVED IN ANY OF THE DATA COLLECTION AND THAT EVERYTHING THEY SAY TO THIS PERSON WILL BE CONFIDENTIAL AND ANONYMOUS. AND THIS PERSON CALLS THEM AND ASKS THREE QUESTIONS. PLEASE TELL ME WHAT WAS GOOD ABOUT BEING IN THE STUDY. PLEASE TELL ME WHAT WAS BAD ABOUT BEING IN THE STUDY. AND IS THERE ANYTHING ELSE THAT YOU WOULD LIKE US TO KNOW? SO IN OUR CURRENT STUDY WE HAVE NOW MORE THAN 30 FAMILIES ENROLLED AND PARTICIPANTS, AND WE INTERVIEWED THEM JUST DAYS AFTER THEY HAVE MADE AN END-OF-LIFE DECISION ON BEHALF OF THIS VERY ILL CHILD, AND WE INTERVIEW THEM AGAIN 4 TO 6 MONTHS AFTER THE CHILD HAS DIED, AND WE ASK THEM THOSE SAME THREE QUESTIONS. AND I'D LIKE TO SHARE WITH YOU THE FINDINGS FROM THIS STUDY AND THEN RELATE THOSE TO THE FINDINGS FROM OUR PREVIOUS STUDIES, USING THE SAME INTERVIEW QUESTIONS. SO IN TERMS OF WHAT WAS GOOD ABOUT PARTICIPATING IN THE STUDY, THESE ARE THE MAJOR CODES THAT HAVE RESULTED SO FAR. SPEAKING ABOUT WHAT IS HARD CLEARED MY MIND. HOPING TO HELP OTHERS. REFLECTING ON BEING A GOOD PARENT GAVE ME CLARITY AND GUIDED MY BEHAVIOR. HELPED ME TO REFOCUS ON MY ILL CHILD'S NEEDS AND WANTS. IT HAS LED TO HEALING MYSELF AND GAINING PERSPECTIVES ON OTHERS. IT HELPED ME TO REALIZE THAT WHEN I DIDN'T THINK I WAS DOING WELL BY MY WHOLE FAMILY, I WAS IN FACT TAKING CARE OF THEM. IN RESPONSE TO THE SECOND QUESTION, PLEASE SHARE WITH ME WHAT WAS BAD ABOUT PARTICIPATING IN THIS STUDY, 100% OF THE PARTICIPATING PARENTS HAVE SAID NOTHING WAS BAD. SHARE WITH ME WHAT ELSE YOU WOULD LIKE US TO KNOW, THE RESPONSE HAS BEEN FROM ABOUT 50% OF THE PARENTS BEING HARD DOES NOT MEAN IT'S BAD BECAUSE BEING HARD MEANT BAD MEMORIES WERE BROUGHT UP, SIMILAR RESPONSES TO ALL OF THE PREVIOUS STUDIES WHERE WE HAVE ALSO USED THIS SAME METHOD. MAY I THANK EACH AND EVERY ONE OF YOU FOR THIS CHANCE OUR RESEARCH. [APPLAUSE] >> THANK YOU, DR. HINDS. NOW WE'LL HEAR FROM OUR THIRD PRESENTER, DR. KATHLEEN BAGGETT, ASSOCIATE PROFESSOR AT SCHOOL OF PUBLIC HEALTH AT GEORGIA STATE UNIVERSITY, DR. BAGGETT IS TRAINED AS AN APPLIED DEVELOPMENTAL PSYCHOLOGIST, AND IS A LICENSED PSYCHOLOGIST HEALTH SERVICE PROVIDER, RESEARCH IS ON EFFECTIVE PARENTING AND CAREGIVING INTERVENTIONS FOR IMPROVING THE SOCIAL AND EMOTIONAL HEALTH AND DEVELOPMENT OF VERY, VERY YOUNG CHILDREN. DR. BAGGETT IS PARTICULARLY INTERESTED IN ADAPTING EFFECTIVE INTERVENTIONS FOR MOBILE INTERNET DELIVERY TO IMPROVE ACCESS TO EVIDENCE-BASED INTERVENTIONS FOR THE MOST IN NEED. PLEASE JOIN ME IN WELCOMING DR. BAGGETT. [APPLAUSE] >> GOOD MORNING. I'M DELIGHTED TO BE HERE WITH YOU TODAY. I'VE BEEN SO EXPRESSED WITH THE QUALITY OF THE PRESENTATIONS. AND THE HEARTFELT THOUGHTFUL QUESTIONS THAT HAVE BEEN RAISED. SO I'M FEELING HONORED TO JOIN YOU IN THE CONVERSATION. I'M KATHLEEN BAGGETT, AND I DIRECT EARLY CHILDHOOD SOCIAL EMOTIONAL HEALTH PROMOTION RESEARCH AT GEORGIA STATE UNIVERSITY IN THE SCHOOL OF PUBLIC HEALTH, IN THE MARK CHAPIN CENTER FOR HEALTHY DEVELOPMENT. AND I'VE BEEN STUDYING WAYS THAT WE CAN MAKE INTERVENTIONS THAT HAVE BEEN SHOWN TO BE EFFECTIVE IN HOME VISITING, FOR STRENGTHENING CAREGIVING, CAREGIVING, MORE ACCESSIBLE TO PARENTS AND CAREGIVERS OF YOUNG BABIES AND PARTICULARLY THOSE WHO ARE MOST IN NEED. I'D LIKE TO BEGIN BY MENTIONING MY ESTEEMED COLLEAGUES WHO HAVE BEEN PARTNERING WITH ME IN THIS RESEARCH OVER THE PAST 10 YEARS. HERE THEY ARE. AND I'D ALSO LIKE TO TAKE A MOMENT JUST TO ACKNOWLEDGE THE SUPPORT FOR RESEARCH. I'M SO GRATEFUL FOR, FROM NIMH, NICHD, THE CENTERS FOR DISEASE CONTROL AND PREVENTION AND U.S. DEPARTMENT OF ED, AND THEN VERY RECENTLY HEALTH RESOURCES AND SERVICES ADMINISTRATION. AND I'D ALSO LIKE TO MENTION THE INDIVIDUALS WHO ARE NOT ON THIS LIST, THE FAMILIES, MOTHERS, CAREGIVERS, WHO REALLY HAVE TAUGHT MYSELF AND MY COLLEAGUES ABOUT THE ROARING RAPIDS WHICH ARE THE SOCIAL DETERMINANTS OF HEALTH THAT MANY FACE, AND WE WILL LOOK AT THOSE IN A MOMENT. ABOUT 17 YEARS AGO I BEGAN MY RESEARCH CAREER AS A POSTDOCTORAL RESEARCHER WITH THE CENTERS FOR THE PREVENTION OF CHILD NEGLECT STUDYING HOME VISITING INTERVENTION WHICH IS NOW IDENTIFIED ON U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES WEBSITE AS ONE OF THE INTERVENTIONS WITH THE STRONGEST EVIDENCE OF EFFECTIVENESS FOR CHANGING AND STRENGTHENING PARENTING AND CAREGIVING BEHAVIOR THAT'S THEN SHOWN TO IMPROVE SOCIAL, EMOTIONAL COMMUNICATION AND COGNITIVE OUTCOMES FOR BABIES, PLAY AND LEARNING STRATEGIES PROGRAM, AND THIS WAS A WONDERFUL OPPORTUNITY TO SEE HOW HOME VISITING INTERVENTIONS CAN DIRECTLY SUPPORT PARENTS IN HELPING TO BUILD THEIR CHILD'S SOCIAL EMOTIONAL LANGUAGE AND COMMUNICATION DEVELOPMENT, VERY EARLY. BUT IT ALSO REALLY OPENED MY EYES TO A SIGNIFICANT GAP IN RESEARCH AND MOREOVER IN PRACTICE, WHEREBY WHAT BECAME CLEAR AT THE END OF THIS PARTICULAR RO1 TRIAL WAS THAT THIS HOME VISITING INTERVENTION THOUGH WE SAW VERY NICE EFFECTS FROM WE KNOW WOULD REACH VERY, VERY FEW FAMILIES IN NEED OF SUCH INTERVENTIONS. FOR EXAMPLE, WE KNOW WITHIN EARLY HEAD START, WHICH IS THE LARGEST NATIONAL HOME VISITING PROGRAM, REACHES LESS THAN 4% OF ELIGIBLE PARENTS AND CAREGIVERS. AND WE ALSO KNOW THAT WHEN WE LOOK AT THE MIGRATION OF EFFECTIVE INTERVENTIONS THAT ARE SHOWN TO BE EFFECTIVE WITHIN RANDOMIZED CONTROL TRIALS, WITHIN EDUCATION AND SOCIAL SCIENCES, WE SEE A 20-YEAR LAG FROM IMPLEMENTATION WITHIN CLINICAL TRIALS TO IMPLEMENTATION WITHIN COMMUNITY PRACTICE. AND THAT'S A TERRIBLY LONG TIME TO WAIT FOR YOUNG MOTHERS. WHAT THAT MEANS ESSENTIALLY IS WE'RE MISSING POTENTIALLY TWO GENERATIONS OF CAREGIVERS. GIVEN WHAT WE KNOW ABOUT THE -- NOW KNOW ABOUT THE ROLE OF CAREGIVING PRACTICES FOR SHAPING AND SUPPORTING VERY EARLY BRAIN DEVELOPMENT, WHICH TRANSLATES TO DEVELOPMENT ACROSS THE LIFE COURSE, AND SO MY COLLEAGUES AND I SET OUT ON A JOURNEY TO THINK ABOUT HOW WE COULD BEGIN DEPLOYING INTERVENTIONS WITH STRONGEST EVIDENCE OF EFFECTIVENESS FOR IMPROVING CAREGIVING PRACTICES. THAT ACTUALLY HAVE SHOWN THE ABILITY TO THEN IMPROVE OUTCOMES, SOCIAL, COMMUNICATION, COGNITIVE, COMPETENCIES FOR VERY YOUNG CHILDREN AND TO THINK ABOUT HOW WE CAN BEGIN MAKING THEM ACCESSIBLE TO ALL CAREGIVERS, ESPECIALLY THE MOST VULNERABLE AND RIGOROUSLY EVALUATE THOSE. SO WITH THOSE SIMPLE GOALS, WE HAVE SET OUT ON OUR JOURNEY TOGETHER AND WHAT WE DID IS BEGAN PARTNERING WITH DR. SUSAN LANDRY AT THE UNIVERSITY OF TEXAS MEDICAL SCHOOL AT HOUSTON WHO HAD DEVELOPED A PLANNED LEARNING STRATEGIES PROGRAM, THINKING HOW WE COULD MOVE THAT TO AN INTERNET-BASED DELIVERY FOR PARENTS WITH REMOTE COACHING, WHICH IS A CORE PROCESS FOR DELIVERING INTERVENTION TO SUPPORT PARENTS. AND IN THAT PROCESS, WE STARTED THIS WORK IN THE MID-2000s, WHICH NOW SEEMS LIKE ANCIENT HISTORY BECAUSE AT THAT TIME WE DIDN'T HAVE -- THERE WERE NOT MOBILE PHONES LIKE WE HAVE NOW, NOT IPADS. WHAT WE DID WAS WE PUT A BIG OLD MAC LAPTOP IN HOMES WITH FAMILIES, WITH A BASE STATION THAT WAS ABOUT THIS BIG, FOR CELLULAR CONNECTIVITY, AND WORKED WITH SUSAN LANDRY TO BUILD A PROGRAM THAT WOULD ALLOW THE SESSIONS WHICH TEACH PARENTS HOW TO RECOGNIZE REALLY EARLY SIGNALS, POSITIVE AND NEGATIVE SIGNALS, FOR THEIR BABIES AND RESPOND TO THOSE IN SPECIFIC WAYS TO PROMOTE THEIR DEVELOPMENT. AND AS WE BEGAN THE TESTING PROCESS, WE TRANSLATED IN ENGLISH AND SPANISH THE MATERIALS WHICH ARE COMPLETELY NARRATED FOR THE SESSION, 12 WEEKLY SESSIONS THAT PARENTS PROGRESS THROUGH, WITH A WEEKLY COACH SUPPORT CALL. AND WE TESTED THIS IN A SERIES OF RANDOMIZED CONTROL TRIALS. AND WHAT WE DID INITIALLY WAS PUT LAPTOPS IN BOTH THE HOMES OF MOTHERS WHO WERE RECEIVING THIS INTERVENTION, AS WELL AS ATTENTION CONTROLLED CONDITION WHERE WE ALSO RECEIVED ACCESS TO PARENTING SUPPORTS AND MATERIALS VIA WEB AND REMOTE COACH WHO WOULD WORK WITH THEM, NOT ON THE SPECIFIC TARGETED SKILLS FOR PROMOTING EFFECTIVE STRATEGIES BUT FOR CONNECTING THEM TO THE SUPPORTS THAT THEY MAY NOT AND TO BE A LISTENING EAR EACH WEEK TO CHECK IN WITH THEM. SO THE GOALS OF THE THE BABY NET PROGRAM TO STRENGTHEN CAREGIVER PRACTICES, AS I MENTIONED, AND TO IMPROVE ACCESS FOR VULNERABLE CAREGIVERS AND INFANTS, AND THE IDEA WAS TO PROVIDE A SKILLS-BASED INTERVENTION THAT USED A PRACTICE, OBSERVATION, REFLECTION TO BUILD INTERACTION SKILLS BETWEEN MOTHERS AND THEIR BABIES WITH 24-HOUR MOBILE ACCESS AND SUPPORTIVE COACH RELATIONSHIP. SO AFTER PARENTS ARE NARRATED THROUGH THE SESSIONS THAT ARE SET UP TO LASTS ABOUT 15 TO 20 MINUTES USING VIDEO, MAINLY VIDEO-BASED MODALITIES OF DISPLAYING INTERACTION, BETWEEN MOMS AND BABIES, ASKING QUESTIONS, EVERYTHING IS NARRATED. THE PROGRAM IS WRITTEN AT ABOUT A THIRD GRADE LEVEL. THAT DOESN'T REQUIRE READING. SESSIONS ARE NARRATED. AND WHEN PARENTS COME TO THE END OF THE INDEPENDENCE SESSIONS THEY HAVE A WEEKLY CALL WITH THEIR COACH. AND THE PURPOSE OF THAT CALL IS TO CO-VIEW VIDEOS COLLECTED BY THAT PARENT, SO EACH SESSION THAT PARENTS COMPLETE, THEY CREATE A VIDEO WITH THEIR CHILD, TRYING OUT THE SKILLS IN THE SESSION. AND THEN THAT'S PLAYED BACK THROUGH A CALL THAT'S DONE WITH A REMOTE COACH, AND THAT'S REALLY THE FOCUS OF THE SESSION, IS WHAT'S GOING ON IN INTERACTION BETWEEN THE PARENT, THE MOTHER IN MOST CASES AND HER CHILD, AND THE PURPOSE OF THAT, LOOK AT. AND THE SEQUENCED INTERVENTION. SO THE SESSION STRUCTURE INVOLVES MOMS STARTING ONSHORE FLOW WITH A DISCOVERY, THEY ARE TRAINED AND SHOWN HOW TO USE AT THIS POINT WE'RE USING IPHONES. WITH MOTHERS IN OUR LATEST STUDIES, THESE ARE FAMILIES WHO ARE LEAVING NEONATAL INTENSIVE CARE UNITS WITH THEIR BABIES, OR OTHERWISE FAMILIES WHO HAVE BEEN RECRUITED FROM THE COMMUNITY WHO ARE ENGLISH OR SPANISH SPEAKING WHO ARE -- WILL LOOK AT MANY CHALLENGES THAT THEY FACE. BUT VERY LOW INCOME. SO THIS SESSION STRUCTURE, AGAIN, WHAT THIS LOOKS LIKE FOR PARENTS WHO ARE RECEIVING THE 12-WEEK SUPPORT SESSIONS ARE THEY BEGIN AND THEY COVER SESSION MATERIAL ON THEIR OWN. THERE ARE CHECK-IN QUESTIONS ABOUT WHAT THEY ARE LEARNING. THEY ARE VERY BRIEF AND MAINLY TO HIGHLIGHT THE CONCEPT. THEY PROVIDE IMMEDIATE, AND MAY ASK IN A VIDEO WHAT KINDS OF POSITIVE SIGNALS IS THE BABY SHOWING, AND WHAT DO YOU NOTICE ABOUT HOW THE CAREGIVERS ARE RESPONDING. AND STEP 3, GUIDED ACTION PLAN FOR PARENTS TO THINK ABOUT WHAT TO TAKE FROM THE MATERIALS THEY ARE LEARNING AND HOW TO USE THOSE. VIDEO CREATION AS I MENTIONED, AND THEN THE COACH CALL. THE SAMPLE -- THIS IS ACROSS SEVERAL STUDIES, DEMOGRAPHICS DISPLAY CHALLENGES THAT MOTHERS ARE FACING WITH THEIR CHILDREN, VERY LOW INCOME, MANY WITH NOT A HIGH SCHOOL DEGREE -- NOT A HIGH SCHOOL DEGREE, AND WE'RE ALSO SEEING VERY HIGH RATES OF MATERNAL DEPRESSION. WE'VE SEEN THE MEAN SCORE ON THE POSTPARTUM DEPRESSION SCREENING SCALE ABOVE CLINICAL CUTOFF, AND EXTRAORDINARILY HIGH LEVEL OF DEPRESSION IN PARENTS. SO ONE OF THE THINGS WE'VE BEEN LEARNING, WE STARTED IMPLEMENTING WITHIN COMMUNITY SAMPLES, FINDING THESE LEVELS OF DEPRESSION BECAME VERY CLEAR THAT WE NEED TO BE MUCH MORE ACTIVE IN THINKING ABOUT HOW WE SUPPORT CAREGIVERS, WHERE THEY ARE, AND BEGIN TO ASK THEM QUESTIONS ABOUT NOT ONLY THEIR HOPES AND DREAMS FOR THEIR BABIES BUT ALSO WHAT THEY NEED TO BE ABLE TO SUPPORT THEIR BABIES AS PARENTS, AND VERY IMPORTANTLY WHAT THEY NEED FOR THEMSELVES. AND SO WHAT WE'VE BEEN DOING IN THE LAST ROUND OF TRIALS AND CURRENTLY FUNDED RO1 WHICH WE'VE JUST BEBEGIN AND WE'RE FINISHING THE FIRST YEAR OF DEVELOPMENT IS TO BEGIN BUILDING INTO THIS CHILD FOCUSED PROGRAM FOR GENERAL PARENTING AND INTEGRATED TREATMENT, SELF-HELP PROGRAM FOR REDUCING MATERNAL DEPRESSION AND TO BEGIN THINKING ABOUT HOW WE START THE CONVERSATION WITH MOTHERS, WHERE THEY ARE. WE'VE BEEN REALLY ENCOURAGED BY THE RESULTS THAT WE'VE SEEN IN TERMS OF KNOWLEDGE CHANGE, ABOUT INFANT SIGNALS AND ABOUT EFFECTIVE STRATEGIES FOR PROMOTING AND MAINTAINING BABIES' ATTENTION, WITH INFANTS MANY TIMES YOU'RE STRUGGLING WITH MAKING EYE CONTACT WITH FOCUS ON A PARENT'S FACE. SMILING. AND SO THIS IS -- YOU KNOW, IT'S GOOD TO SEE THE GROWTH IN TERMS OF HOW PARENTS' KNOWLEDGE AND PROVIDERS ARE CHANGING. REALLY IMPORTANTLY WE WANTED TO KNOW WHAT DO THE INTERACTIONS LOOK LIKE BETWEEN MOTHERS AND BABIES, AND WE'VE DONE PRE AND POST ASSESSMENT AROUND INTERVENTION. AND SEEING SOME NICE CHANGE IN BOTH PARENT BEHAVIORS. THESE ARE REFLECTIVE, THESE GRAPHS HERE, ARE REFLECTIVE OF SKILLS-BASED INTERACTIONS THAT WERE RECORDED PRE AND POST-ASSESSMENT TO LOOK AT CHANGE IN BOTH MATERNAL AND CHILD BEHAVIOR. SO IN CONCLUSION, WE'VE BEEN REALLY PLEASED TO SEE PROGRAM COMPLETION RATES HAVE BEEN HIGH, AND WE'RE SEEING NICE EFFECTS, IN TERMS OF ADAPTING PLANNED LEARNING STRATEGIES PROGRAM FOR MOTHERS THROUGH REMOTE COACHING. AND THERE'S LOTS TO THINK ABOUT IN MOVING TOWARDS SCALABILITY, YOU KNOW, GIVEN THE CONTINUED DIGITAL DIVIDE WITH INTERNET SEEN AND ARE MOVING INTO ISE'VE THINKING ABOUT HOW IMPORTANT IT IS TO BE ABLE TO DELIVER VIA SMARTPHONE. AND REALLY BEGINNING TO THINK ABOUT WE NEED TO HAVE SYSTEMATIC WAYS WE ENGAGE IN GATED SCREENING PROCEDURES WITH FAMILIES ENTERING INTO THESE PROGRAMS TO MEET THEM RIGHT WHERE WE ARE, RIGHT NOW THERE'S A SUBSTANTIAL DIVIDE IN HOW WE APPROACH PARENTING IN GENERAL AND HOW WE APPROACH PARENT SUPPORT. AND WE REALLY NEED TO BRING THOSE TOGETHER IN THE NEXT 10 YEARS AND THINK ABOUT HOW IT IS WE BUILD OPPORTUNITIES FOR INTENTIONAL EMBEDDING OF CAREGIVER MENTAL HEALTH AND SOCIAL SUPPORT-FOCUSED INTERVENTION IN REDUCING DEPRESSION FOR SUPPORTING THEIR CHILDREN. THANK YOU. [APPLAUSE] >> WELL, THANK YOU TO OUR THREE WONDERFUL SPEAKERS WHO HAVE REALLY DESCRIBED INCREDIBLY IMPACTFUL WORK. SO WHAT HAVE WE LEARNED? JUST AT A BEGINNING OF THIS CONVERSATION, RELATED TO CAREGIVERS OF AT-RISK OR SERIOUSLY ILL CHILDREN, FROM DR. HENDERSON WE LEARNED ABOUT THE NOVEL CONCEPT OF DIABETES BY PROXY. I THINK THIS IS TREMENDOUSLY IMPORTANT. I THINK IN MY CLINICAL PRACTICE, WE KIND OF NOTICED THAT TRANSITION A LITTLE BIT, WHEN PARENTS STOPPED TALKING ABOUT WHAT THEIR CHILD IS EXPERIENCING AND THEY SAY, WE HAD A BAD NIGHT'S SLEEP, WE'RE HAVING ABDOMINAL PAIN, THIS MERGING AS WAS DESCRIBED WITH THEIR CHILD. AND ALSO IN MY CLINICAL EXPERIENCEs I NOTICED NOT ONLY ARE THERE CONSEQUENCES AS DR. HENDERSON DESCRIBED, BUT IT CAN BECOME PATHOLOGICAL WHERE WE GET INTO THE REALM OF MEDICAL CHILD ABUSE, AND HOW DO WE MITIGATE THAT AND PREVENT THAT EXTREME CAREGIVING IN A WAY THAT OBVIOUSLY PROMOTES THE BEST POSSIBLE WELL-BEING FOR CHILDREN AND THEIR FAMILIES. AND IN DR. HINDS' CREATIVE WORK AND COURAGEOUS WORK, SHE'S ASKING HIGHLY SENSITIVE QUESTIONS OF CHILDREN WITH CANCER AND THEIR PARENTS, AND IDENTIFIED THIS CRITICALLY IMPORTANT CONSTRUCT OF BEING A GOOD PARENT. AND UNDERSTANDING, AND THIS IS AN AREA THAT'S REALLY CHALLENGING, NOT ONLY TRYING NOT -- TRYING NOT ONLY TO STUDY MOTHERS BUT STUDYING FATHERS AS WELL, AND UNDERSTANDING THAT THERE ARE DIFFERENCES BY GENDER, FOR EXAMPLE, MOTHERS, MOST IMPORTANTLY, WANTING TO BE A LOVING PRESENCE. FATHERS WANTING TO PROTECT MY CHILD AND HOW DO YOU HARNESS THOSE DIFFERENCES AND AGAIN BRING THEM TOWARDS THE BEST POSSIBLE OUTCOMES FOR THEIR CHILDREN AND THEIR FAMILIES, AND DR. HINDS ALSO ASKING HIGHLY VALUABLE QUESTIONS ABOUT WHAT IS IT LIKE TO PARTICIPATE IN THIS RESEARCH. OF COURSE WE'VE ALL HAD SO MANY CHALLENGES IN GETTING OUR STUDIES THROUGH IRBs, AND UNDERSTANDING, AS WE'VE ALSO DONE IN OUR RESEARCH, THAT PARENTS REALLY WANT TO BOTH TELL THEIR STORIES BUT ALSO CONTRIBUTE TO THE ADVANCEMENT OF THE SCIENCE OF CAREGIVING, AND WE SHOULD NOT SHY AWAY FROM INVOLVING THEM IN THIS WORK. AND FINALLY, DR. BAGGETT, WHO IS AT THE INTERVENTION STAGE OF THIS WORK WHERE SHE'S TAKEN THE CONSTRUCT OF HOME VISITS WHICH WE KNOW FAMILIES TRULY APPRECIATE AND ACTUALLY ARE HIGHLY IMPACTFUL IN THE SENSE THAT THEY ARE MEETING FAMILIES WHERE THEY ARE TYPICALLY RESIDING, WHERE THEY ARE LIVING, WHERE THEIR COMMUNITY SURROUNDS THEM, PROVIDING REMOTE COACHING THROUGH MODERN TECHNOLOGY, GOING FROM WHATEVER YOU STARTED OFF WITH TO USING THE MOBILE APPS ON PHONES, FOR EXAMPLE. AND PROVIDING 24 ACCESS TO COACHING WITH WHAT WE'RE SEEING AS POWERFUL OUTCOMES THAT THOSE CHILDREN ACTUALLY ARE ATTAINING SKILLS AT A BETTER RATE AND THEIR PARENTS ARE ALSO HAVING IMPROVED WELL-BEING. AND TRYING TO CIRCUMVENT THAT LAG FROM DEVELOPING AND INTERVENTION TO IMPLEMENTATION STAGE OF 20 YEARS LATER. SO WE'VE LEARNED A LOT FROM OUR SPEAKERS TODAY. IT'S JUST THE BEGINNING. AND WE KNOW THIS SCIENCE OF CAREGIVING AS IT PERTAINS TO PEDIATRICS IS A HUGELY IMPORTANT FIELD, AND WHY IS IT SO IMPORTANT? WELL, WE ARE BRINGING UP THE NEXT GENERATION OF ADULTS. AND WE WANT THEM TO BECOME THE BEST POSSIBLE CONTRIBUTORS TO OUR SOCIETY, AND WE'RE TALKING ABOUT PARENTS WHO ARE OFTEN AT THE EARLY STAGES OF PARENTING, AND WE WANT THEM TO CONTINUE TO BE THE BEST POSSIBLE CONTRIBUTORS TO SOCIETY, WHETHER OR NOT THEIR CHILDREN SURVIVOR. WE WANT TO BUILD THEIR RESILIENCE. AND WE KNOW THAT RESILIENCE TRANSLATES INTO BETTER PERSONAL OUTCOMES, BUT ALSO LESS HEALTH CARE UTILIZATION, AND LOWER COSTS, AND HIGHER CONTRIBUTION TO MOVING OUR SOCIETIES FORWARD. SO FOR THAT WE JOIN TOGETHER IN AGREEING THIS IS A CRITICALLY IMPORTANT AREA OF INVESTIGATION. SO THANK YOU SO MUCH FOR YOUR WONDERFUL CONTRIBUTIONS. AND NOW WE WILL HAVE QUESTIONS FROM THE AUDIENCE. PLEASE REMEMBER TO IDENTIFY WHO YOU ARE AND TO USE THE MICROPHONES. I'LL TAKE A SEAT AND WE'LL ASK SOME QUESTIONS TOGETHER. >> GOOD MORNING. MY NAME IS MARGARET BEVINS, RESEARCHER AT THE CLINICAL CENTER, BUILDING 10, THE HOSPITAL OF THE NIH INTRAMURAL RESEARCH PROGRAM. I HAVE TWO COMMENTS. FIRST, THANK YOU FOR A WONDERFUL PRESENTATION. YOU STARTED THE MORNING OFF REALLY WELL. AND IT HAS MY MIND GOING CRAZY WITH IDEAS, I THINK IT'S FABULOUS. TWO COMMENTS AND THEN I'LL SIT DOWN AND LISTEN TO YOUR RESPONSES. THE FIRST ONE IS REALLY OUT OF THE PRESENTATION DR. HINDS THAT YOU GAVE WHICH IS TALKING ABOUT THE CONCEPT OF THE GOOD PARENTS. DOES THAT TRANSLATE TO JUST BEING THE GOOD CAREGIVER ACROSS OTHER SITUATIONS? BECAUSE WE OFTEN HEAR SO MY WORK IS IN INDIVIDUALS CANCER, SERIOUS ILLNESS, SO THEY ARE NOT CARING FOR CHILDREN BUT IT REALLY RESONATESSED WITH ME, SEEMED LIKE SOMETHING WE HEAR FROM ADULT CAREGIVERS OF ADULT PATIENTS AS WELL. AND THE SECOND IS IN THE PEDIATRIC WORLD, IT REALLY SEEMS LIKE IT'S A GREAT MODEL. YOU TALKED ABOUT MOTHERS AND FATHERS, MEN AND WOMEN, IT'S A GREAT MODEL FOR LOOKING AT HOW SEX MAY IMPACT OR HOW IT AFFECTS CAREGIVING EXPERIENCE AND HOW WE CAN LEARN FROM THAT. I DON'T KNOW THAT WE DO A GOOD JOB IN THE ADULT CAREGIVING WORLD WITH THAT AND WANTED YOUR THOUGHTS. HAVE YOU HEARD OF WORK BEING DONE TO LOOK AT NON-TRADITIONAL COUPLES, MALE/MALE, FEMALE/FEMALE, RAISING FAMILIES AND DEALING WITH THOSE WITH SERIOUS ILLNESS? SO THANK YOU AGAIN. >> THANK YOU SO MUCH FOR THE QUESTIONS. SO IN REGARD TO THE FIRST QUESTION, I ACTUALLY BELIEVE THAT THE CONSTRUCT OF BEING A GOOD PARENT IS EASILY TRANSLATED INTO THE EXPERIENCES OF OTHERS. SO WE'VE BEGUN WORK LOOKING AT THE CONSTRUCT OF BEING A GOOD DOCTOR, BEING A GOOD NURSE, AND BEING A GOOD PARENT AND BEING A GOOD CHILD. AND BEING A GOOD CHILD WORK IS BEING LED SO CAPABLY BY DR. MEGAN WEAVER, NOW AT NEBRASKA. WHAT WE HOPE TO DO IS TAKE FROM THE CONCEPTUAL LEVEL TO CLINICAL LEVEL WHERE WE'RE TALKING ABOUT THE SAME DECISION FOR THE SAME CHILD WITH ALL THE DIFFERENT PERSPECTIVES REPRESENTED, CONCEPTUALLY WE'RE ABLE TO MAKE, WE THINK, DISTINCTIONS AMONGST THESE. BUT WE WONDER WHAT REALLY HAPPENS IN AN ACTUAL CLINICAL CARE SITUATION. ISN'T THAT WHAT THE DISTINCTIONS MAY EMERGE, AND ISN'T THAT WHERE THE TENSIONS THAT CAN EMERGE AT END OF LIFE DECISION MAKING MIGHT BE BEST EXPLAINED? SO I WOULD AGREE WITH YOU THAT THAT IS LIKELY RELEVANT IN THE ADULT WORLD. I DON'T HAVE DATA FROM ADULT WORLD. I'M OLD BUT DON'T KNOW MUCH ABOUT ADULTS SO I CAN'T REALLY SPEAK WELL TO THAT GENERALIZABILITY. [ CHUCKLES ] SORRY. SECOND QUESTION? WOULD YOU REPEAT THE SECOND QUESTION? WE LIKED IT. [LAUGHTER] YEP, THANK YOU FOR THAT. WE ARE HOPING, BECAUSE WE WORK IN SUCH A DIVERSE HOSPITAL, THAT WE WILL HAVE THE PRIVILEGE OF WORKING WITH COUPLES THAT ARE MAN/MAN, WOMAN/WOMAN AND SO FORTH. WE'VE NOT YET HAD THAT PRIVILEGE BUT I'M SO HOPEFUL OF THAT. I THINK THE VERY IMPORTANT CLINICAL INDICATOR FOR THE LONE PARENT, WHICH IS ALMOST ALWAYS THE MOM IN OUR STUDIES, IS INTERESTING THAT THE MOM THEN MOST HIGHLY RANKED WITH THE FATHER IN A COUPLE REPORTED AS THE MOST IMPORTANT AND TOP RANKED, AND SO FOR THE LONE MOM IT HAS BEEN BEING SO WELL INFORMED THAT I CAN CONTRIBUTE WELL TO MEDICAL DECISION MAKING. SO WE'RE NOT SURE WHAT THAT MEANS. DOES IT MEAN THAT THE LONE MOM ASSUMES BOTH ROLES BECAUSE THE SECOND-RANKED ELEMENT IS MAKING SURE MY CHILD IS WELL LOVED, FEELS WELL LOVED? SO AT THIS POINT WE'RE VERY EARLY IN THE SCIENCE. WE DON'T HAVE THE DATA FOR THAT. BUT I THINK IT'S REALLY IMPORTANT TO ADDRESS WHAT YOU HAVE RAISED. SO THANK YOU. >> GOOD MORNING, EVERYONE. I ENJOYED EVERYONE'S PRESENTATION. MY NAME IS SHAHQUITA STARKS, STRICK NURSE PRACTITIONERS, ASSISTANT PROFESSOR AT UNIVERSITY OF TENNESSEE HEALTH% SCIENCE CENTER. I DID A STUDY WITH AFRICAN-AMERICAN CAREGIVERS OF PEOPLE WITH END STAGE RENAL DISEASE, AND IN THAT STUDY I FOUND THEY HAD LOW LEVELS OF DEPRESSION AND STRESS, BUT THEY HAVE PHYSICAL SYMPTOMS, SUGGESTED STRESS AND DEPRESSION. IN A LOT OF LITERATURE WE SEE STRESS AND BURDEN IS LOW IN AFRICAN-AMERICAN CAREGIVERS, I WANTED TO ASK DR. HENDERSON, I NOTICED YOU SAID SOME PARENTS IN YOUR STUDY HAD SOME HYPERVIGILANCE AND SLEEP DISTURBANCE AND THINGS LIKE THAT. AND THAT'S SCARY TO SEE YOUR CHILD, YOU KNOW, NEAR DEATH PRETTY MUCH EVERY DAY. I WANTED TO KNOW IF YOU TOOK A TRAUMA, WOULD YOU CONSIDER TAKING A TRAUMA-INFORMED APPROACH TO ADDRESSING CAREGIVERS NEEDS AND HOW YOU -- HOW WOULD YOU LEARN MORE ABOUT THEIR EXPERIENCE WITH STRESS AND DEPRESSION? >> ONE OF THE REASONS THAT WE WANTED TO DO THIS PARTICULAR STUDY WAS TO ASSIST THE BEHAVIORAL MEDICINE SECTION AT THE CHOCTAW HOSPITAL, WHICH IS IN TALAHENA, OKLAHOMA. AND SO WITH THE ANALYSIS STILL UNDERWAY, AND WE'RE BUILDING THAT DOCUMENT AND THAT TRAINING FOR THEM, SO IT HASN'T BEEN DELIVERED YET, BUT I DO THINK THAT IT IS VERY REASONABLE TO CONSIDER THESE PARENTS, AND THIS INCLUDED BY THE WAY GRANDPARENTS AND OCCASIONALLY OLDER SIBLINGS IF THEY WERE OVER 18. AND THE KIND OF CONTINUAL STRESS THAT THEY EXPERIENCE I THINK WOULD BE SOMETHING THAT A TRAUMA-BASED KIND OF APPROACH OR ASSESSMENTS WOULD MAKE SENSE. THE DURATION OF THE PARENTAL EXPERIENCE RELATIVE TO THEIR STRESS APPEARS TO BE CURVY LINEAR, HIGH AT FIRST, MOVES OUT AS THE CHILD GETS OLDER. BOTH PARENTS AND CHILD ARE MORE EXPERIENCED WITH MANAGING THIS. AS THE CHILD CONTINUES TO AGE, AND WE WOULD THINK AS EVEN MORE CAPABLE OF DILIGENT SELF-CARE, MAYBE LEAVES TO GO TO WORK OR COLLEGE, LEAVES THE HOME, THE PARENTS' STRESS INCREASES THEN. AND SO THERE'S NO REALLY REST FOR THE WEARY IN THIS. RELATIVE TO DEPRESSION AND ASSESSMENTS THERE I THINK THAT CERTAINLY MAKES SENSE. AND IT IS A KIND OF ALMOST AGITATED DEPRESSION, THAT YOU CAN'T FALL INTO SORT OF THE CLASSIC SYMPTOMS OF WITHDRAWAL AND PARALYSIS OF WILL. THAT JUST WON'T WORK. NONETHELESS, THERE ARE SOME OF THE MORE VEGETATIVE KIND OF SYMPTOMS AND SIGNS, AND SO THIS IS WHY I FELT LIKE THESE PARENTS, WHILE WE ALL KNOW THEY HAVE STRESS, NEED MORE ATTENTION THAN THEY ARE TYPICALLY GIVEN BECAUSE IT'S THE CHILD THAT MIGHT DIE IMMEDIATELY. NONETHELESS, IT'S A SYMBIOSIS THAT NEEDS TO BE MAINTAINED. >> THANK YOU. >> THIS IS ANOTHER QUESTION FOR DR. HENDERSON AND BUILDS ON THE PREVIOUS QUESTION FROM THE SIDE OF THE ROOM. I'M MARION GRANT, POLICY CONSULTANT WITH COALITION TO TRANSFORM ADVANCED CARE. SO I HAVE -- I'M ALSO A PALLIATIVE CARE NURSE PRACTITIONERS, FOCUSED ON OLDER ADULTS, THE IDEA OF ILLNESS BY PROXY, AND HIDDEN PATIENTS, I WOULD SAY MY CLINICAL AND MY POLICY EXPERIENCE IS THAT THE SAME SEEMS TO ME TO BE TRUE FOR ADULT CAREGIVERS. AND, AGAIN, I KNOW THAT'S NOT WHAT YOUR RESEARCH FOCUSED ON BUT COULD THOSE OF US IN THE ROOM WHO FOUND THAT INTERESTING AND MOTIVATING, COULD WE PERHAPS EXTRAPOLATE THAT TO THE ADULT POPULATION? >> I DON'T SEE WHY NOT. I DO THINK THAT SINCE WE'RE ON THE YOUTH TOPIC FOR THE MOMENT HERE, AND THAT IS THAT PEDIATRIC DISEASES DO HAVE A LETHAL COMPONENT TO IT, PROVOKE THIS, WHETHER IT'S TYPE 1 DIABETES OR SOMETHING ELSE. BUT FOR THE ADULT POPULATION, I THINK I DRAW -- THIS IS A BIT OFF THE TOP MUCH MY HEAD. I HAVE DONE A LOT OF ALZHEIMER'S SUPPORT GROUP AND WORK WITH CAREGIVERS THERE, AND THE ALZHEIMER'S OR DEMENTIA PERSON THAT'S EXPERIENCING THIS WILL EVENTUALLY HAVE A FATAL OUTCOME, IF SOMETHING ELSE DOESN'T INTERVENE. AND SO THERE IS A LETHAL COMPONENT TO IT. BUT IT I THINK IS THE IMMEDIACY OF WHAT COULD HAPPEN WITH THE TYPE 1 EXPERIENCE THAT'S DIFFERENT. SO THEY ARE BOTH -- BOTH CAREGIVING SITUATIONS ARE WEARING, STRESSFUL, AND YET I DON'T THINK THE ALZHEIMER'S CAREGIVER LIVES WITH THIS SENSE OF IMMINENT THREAT OF NOT WAKING -- THE PATIENT NOT WAKING UP THE NEXT MORNING. SO I THINK -- >> BUT CERTAINLY SOMEBODY WITH ANOTHER ILLNESS, SOMEBODY WHO IS IN THE END STAGE OF CANCER, WHO IS HAVING TREATMENT COMPLICATIONS OR SOMEBODY WHO HAS END STAGE HEART FAILURE OR TERRIBLE CARDIAC CONDITION, CAREGIVERS ARE WORRIED THEIR LOVED ONE ISN'T GOING TO WAKE UP EITHER, RIGHT? >> YES, AND THEN -- I THINK YOU'RE RIGHT, AND THEN WE MIGHT ADULT THE COMPONENT ON IT OF THAT MANY PEOPLE SEEM TO AUTOMATICALLY FEEL, AND THAT IS THE OLDER PERSON IN THEIR 70'S, '80s, '90s, THAT'S GOING TO PASS AWAY, THAT'S A FAIRLY NORMAL PHENOMENON, VERSUS A CHILD, BUT THE CASES THAT YOU'RE MENTIONING IN MID-LIFE, YOU KNOW, THAT STILL DOES FEEL LIKE A PREMATURE DEATH. >> YEAH. >> SO I THINK, YES, WITH MODIFICATIONS. >> THANK YOU VERY MUCH. >> HI, GOOD MORNING. MELINDA CAVANAUGH, UNIVERSITY OF MILWAUKEE, ALSO FOR DR. HENDERSON. I'M VERY INTERESTED IN THE IDEA OF REARRANGING OR KIND OF ALTERING ROUTINES AND HOUSEHOLD STRUCK FOR CAREGIVERS, PARTICULARLY CHILDREN AND YOUTH IN NEUROLOGICAL DISORDERS. I'M WONDERING IF YOU LOOKED AT THE ROLE OF THE CHILD AND REARRANGING WHETHER THEY WERE A CAREGIVER OR A SIBLING, WHAT ROLE THEY'VE THEY HAD IN REARRANGING THEIR ROUTINE AND THEIR LIVED ENVIRONMENT, BECAUSE I CERTAINLY KNOW FROM MY OWN RESEARCH THESE ARE CHILDREN WHO ARE HAVING DISRUPTIVE SLEEP TO GET UP AND PROVIDE CARE, MOVING WHERE THEY SLEEP, OFTEN SLEEPING ON THE COUCH TO BE EASILY ACCESSIBLE TO THE PERSON LIVING WITH AN ILLNESS. I'M JUST WONDER FIGURE YOU HAD INCLUDED A BROADER RANGE IN YOUR QUESTIONS AND IN YOUR STUDIED OR WAS JUST FOCUSED ON THE PARENT. >> WE ONLY WERE -- HAD CONSENT TO WORK WITH THE PARENTS. HOWEVER, THE PARENTS WERE TELLING US FROM THEIR PERSPECTIVE WHAT THE REST OF THE FAMILY DYNAMICS WERE LIKE AND WHAT THEIR CAREGIVING WAS LIKE. AND IT DID INCLUDE OF COURSE DESCRIPTIONS ABOUT A CHILD'S REACTION TO HAVING TO MAYBE NOT PLAY FOOTBALL, OR TO NOT BE ABLE TO GO TO A BIRTHDAY PARTY AND HAVE TO ALTER WHAT THEY EAT. AND SO THOSE KINDS OF FACTORS PROVOKED A NEGATIVE RESPONSE FROM THE CHILD ACCORDING TO THE PARENTS, BUT ALSO MAINLY COMPLIANCE. I THINK THE CHILDREN HAD THE SENSE THAT THEY REALLY HAD ACCEPTED THAT THIS HAS TO BE DONE, OR THERE WILL BE PROBLEMS. >> I'M ACTUALLY REFERRING TO OTHER CHILDREN IN THE HOME WHO MAY SERVE AS CAREGIVERS. >> I'M SORRY. >> NO, THAT'S FINE. YOU KNOW, BECAUSE IT'S OBVIOUSLY A VERY UNDERACKNOWLEDGED POPULATION, BUT WHETHER THERE'S A SIBLING IN THE HOME PROVIDING CARE FOR THAT OTHER SIBLING WITH DIABETES, OR IN THE RESEARCH I DO, IT'S A CHILD, A MINOR CHILD, PROVIDING CARE TO A PARENT OR GRANDPARENT WITH A CHRONIC DISORDER. AND I WAS WONDERING IF YOU INCLUDED THAT ASPECT. >> NO, THERE WASN'T. OCCASIONALLY WE WOULD HEAR A LITTLE DISCUSSION ABOUT THAT BUT NOT VERY MUCH, FOCUSED PRETTY MUCH ON THE PARENTS. BUT YOU'RE RIGHT, THAT'S A GROUP THAT IS PART OF THAT FAMILY REARRANGEMENT OF DYNAMICS. >> YEAH, YEAH. THANK YOU. >> MORE POWER TO YOU AND YOUR WORK. >> OH, THANK YOU. THANK YOU VERY MUCH. >> I'M GOING TO INTERJECT AND ASK A QUESTION OF DR. BAGGETT AROUND SINCE I'M VERY INTERESTED IN INTERVENTION DEVELOPMENT, AND IF YOU COULD DESCRIBE FOR US A LITTLE BIT ABOUT WHETHER OR NOT THERE ARE CHALLENGES WITH REGARD TO ADHERENCE TO INTERVENTION AND HOW YOU CIRCUMVENTED THEM. >> WERE THERE CHALLENGES? AREN'T THERE ALWAYS? YEAH. YOU KNOW, SO WHAT WE WERE -- WHAT WE'VE BEEN WORKING TO DO IS TO TAKE, YOU KNOW, THIS HOME VISITING MODALITY WITH A CORE INGREDIENT OF BUILDING A SUPPORTIVE COACH RELATIONSHIP, AND THEN THINKING ABOUT HOW IT IS THAT WE DO THAT REMOTELY, AND SO WHEN I FIRST STARTED WITH THIS IN ABOUT THE MID-2000s, I HAD SERIOUS DOUBTS ABOUT WHETHER OR NOT WE WOULD BE ABLE TO HELP OUR COACHES AND WHETHER COACHES AND FAMILIES, PARENTS, MOTHERS IN PARTICULAR, WOULD FEEL THE KIND OF CONNECTION, AND SOCIAL RELATIONSHIP THAT WAS BUILT THROUGH HOME VISITING. THAT WAS A HUGE EMPIRICAL QUESTION. AND SO -- WHAT WE DID IS WE COLLECTED -- WE COLLECTED DATA ON THAT, BOTH FROM OUR HOME VISIT, BOTH FROM OUR COACHES, MANY OF WHOM HAD BEEN HOME VISITORS, AND FAMILIES, TO LOOK AT THEIR PERSPECTIVES ON THAT. AND WHAT WE FOUND, WE LOOKED AT -- WE USED A MEASURE LOOKING AT THERAPEUTIC ALLIANCE. IT WAS ACTUALLY ADAPTED BECAUSE WHEN WE FIRST BEGAN THIS, IT WASN'T A CLINICAL POPULATION WE WERE WORKING WITH BUT VERY MUCH WANTED TO LEARN ABOUT THE CONNECTION FROM THE PERCEPTION OF BOTH THE COACH AND PARENTS. AND THE RATINGS ON THOSE, THERAPEUTIC ALLIANCE SCALES FROM PERSPECTIVE OF COACH AND PARENTS WERE VERY, VERY SIMILAR TO OUR HOME VISITING DATA COLLECTED. ANOTHER SORT OF INTERESTING THING, THE FIRST ROUND OF TESTING THAT WE HAD FROM A DEVELOPMENT STUDY FUNDED BY NIH, WE WERE IMPLEMENTING SO THE INTERVENTION -- THE REMOTE COACHES WERE LOCATED IN KANSAS CITY, MISSOURI. AND OUR PARTNERS WERE ON THE WEST COAST. AND WHAT WE REALLY WANTED TO SORT OF TEST THIS DISTANCE THING, AND SO WHAT -- THE ASSESSORS RECRUITED FAMILIES IN RURAL OREGON. AND THEN WE WERE WORKING WITH REMOTE COACHES IN THE MIDWEST. AND SO PART OF THE PROCESS IN TERMS OF THE ADAPTATION OF THE INTERVENTION INCLUDED RESOURCES WHICH WOULD HAVE BEEN AVAILABLE THROUGH THE HOME VISITING CONTEXT, BUT WE WORKED WITH OUR PARTNERS IN OREGON TO IDENTIFY LOCAL SORTS OF SUPPORTS FOR FAMILIES. THOSE WERE INCORPORATED INTO THE MATERIALS AS WELL. WHAT WAS SO INTERESTING TO ME IS THE COMMENTS THAT I WOULD GET FROM COACHES AFTER OUR PROJECT ENDED WITH MOTHERS WHO WOULD RECONNECT WITH THEIR COACH AND WOULD SAY, SO NOW I'VE GOT -- NOW, YOU KNOW, MY -- WAS MY BABY NOW -- IS NOW GETTING READY FOR PRESCHOOL AND STRUGGLING, I WANT TO KNOW ABOUT THE NEXT PARENTING PROGRAM LIKE THIS THAT I CAN DO. OR WOULD REACH OUT IN THOSE WAYS. AND SO THAT WAS SORT OF INTERESTING FACET. I DON'T KNOW IF IT QUITE ADDRESSES THE CHALLENGES, BUT THERE ARE MANY, AND -- YES. >> I GUESS WHAT YOU'RE SAYING IS THERE ARE MANY CHALLENGES AND YET IT STILL WORKS, IN THE REMOTE COACHING IT CAN BE VERY BENEFICIAL. >> IT CAN BE DONE, YES. >> YES, THAT'S GREAT. THANK YOU. >> HI, GRACE WHITING WITH NATIONAL ALLIANCE FOR CAREGIVING. THANK YOU FOR THE WONDERFUL PRESENTATIONS. I WAS STRUCK BY BABY NET AND DIABETIC WORK, IN PARTICULAR DISCUSSION ABOUT HOW IN THE UNITED STATES AT LEAST OUR FAMILIES KIND OF ISOLATE. I'M WONDERING WHERE THERE ARE CO-RESIDENT RELATIVES OR NEIGHBORS OR OTHERS LIVING IN THE HOUSEHOLD, DOES THAT ACTUALLY REDUCE BURDEN FOR THESE PEDIATRIC CAREGIVERS? BECAUSE WE KNOW IN ADULT CAREGIVING AT LEAST THAT CO-RESIDENTS CAN ACTUALLY MAKE THE BURDEN MORE INTENSE ON THE CAREGIVER, SO FOR EXAMPLE IF THERE WERE GRANDPARENTS OR AUNTS AND UNCLES OR A FRIEND WHO WAS INVOLVED. >> THE SIMPLE PRESENCE OF A LARGER NETWORK OF ANY SORT DOESN'T ALWAYS MEAN GOOD THINGS ARE GOING TO HAPPEN FROM IT. AND SO IN THIS CASE, WE DO NOT HAVE DATA THAT WOULD SUPPORT MY HYPOTHESIS THAT THESE -- THE KIND OF INTENSIVE CAREGIVING THAT WE SEE ACROSS THE AGE SPECTRUM IN THIS COUNTRY IS SOMETHING THAT'S TIED TO THIS POST-MARITAL NEOLOCAL RESIDENTS THAT SENDS PEOPLE AWAY FROM HOUSEHOLDS. I DO NOT HAVE DATA FOR THAT. CROSS-CULTURALLY IT COMES FROM CROSS-CULTURAL STUDIES IN WHICH FAMILIES THAT GROW UP WITH A ETHIC AND VALUE AND LIVED EXPERIENCE OF INTERDEPENDENCE AND CO-LIVING, CO-RESIDENCE WITH EACH OTHER, SAIL ALONG PRETTY WELL IN THIS REGARD. I THINK WHAT HAPPENS IN THIS SOCIETY, WE ARE EARLY ON SOCIALIZED INTO THIS HIGH INDIVIDUALISM, AND THEN LATER ON WE'RE TRYING TO LIVE TOGETHER AS A GROUP. WE DON'T HAVE EXPERIENCE WITH THAT. WE DON'T HAVE EXTREME HIGH VALUE FOR THAT. AND SO I THINK THAT MIGHT BE WHERE SOME OF IT COMES FROM. AND IT DOESN'T MEAN THE OTHER SOCIETIES THAT I'M TALKING ABOUT OR NATIVE AMERICAN POPULATIONS IN WHICH I COULD POINT TO AS WELL HERE IN THE UNITED STATES BOUNDARIES, IT DOESN'T MEAN THOSE ARE ALL PERFECT EITHER. BUT THERE MAY BE SOME REASONS WHY WE'RE HAVING THIS CONFERENCE THAT MAY HAVE CULTURAL ROOTS TO THEM, TO IT. I ALSO THINK I FAILED TO COME BACK TO THE BABY CAGES AND EXPLAIN THAT. BUT IT'S RELATED TO THIS POST-NEOLOCAL RESIDENCE, THAT YOU DON'T HAVE OTHER PEOPLE TO HELP YOU WATCH FOR THIS SO THE CAREGIVING INTENSIVELY FALLS ON ONE OR A COUPLE OF PEOPLE, AND OCCASIONALLY YOU NEED TO PUT THEM IN A CAGE. AS OPPOSED TO HAVING A NETWORK OF PEOPLE, MULTIPLE AGES AND CAPABILITIES, AROUND. SO IF WE LOOK AT OTHER POPULATIONS, I WAS IN AUSTRALIA, LUNA, AN OUTBACK COMMUNITY, THERE ARE NO CRIBS, THERE ARE NO PLAYPENS. THERE'S A BUNCH OF PEOPLE LIVING CLOSE TOGETHER WITH EACH OTHER. SO THAT'S WHERE I WAS PARTLY EXTRAPOLATING FROM THAT, YEAH. >> THANK YOU. >> YES, KAREN CARLOWITS, NORFOLK, VIRGINIA. I COULD PROBABLY ASK THE QUESTIO FOR ALL THREE SESSIONS. AFTER LISTENING YESTERDAY AND PRESENTATIONS THIS MORNING THE QUESTION I HAVE IS, I'M WONDERING ABOUT THE ETHICS OF A HEALTH CARE SYSTEMS THAT PUTS SO MUCH BURDEN ON FAMILY CAREGIVERS, AND WHAT ARE THE ETHICAL CONSIDERATIONS THAT WE NEED TO BE TAKING INTO ACCOUNT WHEN WE ASK A FAMILY CAREGIVER TO ASSUME MAJOR CAREGIVING RESPONSIBILITIES? >> FIRST THING THAT COMES TO MIND, I SEE THIS AS A PUBLIC HEALTH SITUATION. WE SAW THAT BROUGHT OUT YESTERDAY TOO. AND IT'S A POLITICAL-ECONOMIC PROBLEM. SOURCE OF THE PROBLEM AND SOLUTION TO IT IS POLITICAL AND ECONOMIC. SOMETIME IN THE 1980s I HAD A GRANT FROM ADMINISTRATION ON AGING TO DEVELOP ALZHEIMER'S SUPPORT GROUPS IN AFRICAN-AMERICAN COMMUNITIES IN SPANISH-SPEAKING COMMUNITIES IN TWO DIFFERENT CITIES TO SEE IF THE THING WORKED. AND I FELT LIKE IT WAS FUNDED BECAUSE IT WAS ANOTHER WAY TO DISPLACE THE BURDEN AND COST ONTO THE PRIVATE CITIZEN, OR TO KEEP IT THERE. AND THAT IS A MACROECONOMIC KIND OF CONCEPT THAT IS GENERATED FROM A CERTAIN KIND OF POLITICS THAT'S GOING ON. THAT'S MY INPUT ON IT. >> I VERY MUCH VALUE THAT QUESTION AND I'VE BEEN PONDERING THE SAME THING OVERNIGHT. WE HAD A FAMILY DISCUSSION AT THE DINNER TABLE. I THINK THERE ARE TIMES WHERE INSTRUMENTAL OBJECTIVE SUPPORT WOULD BE SO VALUED BY FAMILIES. BUT THERE ARE ALSO TIMES WHEN FAMILIES DO NOT WANT TO BE REPLACED. AND AT THE POINT OF CARE AS A NURSE, WHEN WE WILL SAY TO A FAMILY, WOULD YOU LIKE TO GO TAKE A SHOWER, I PROMISE I WON'T LEAVE YOUR CHILD, I PROMISE, AND THE PARENTS SAY NO, NO, I CAN'T LEAVE, IT'S PART OF WHAT I HAVE TO DO. SO IT'S NOT BECAUSE OF THIS SENSE OF OBLIGATION. IT'S THE SENSE OF TRULY WANTING TO BE THERE FOR EVERY BREATH. SO IT LOOKS TO ME CLINICALLY THAT THERE IS A CERTAIN TIME WHERE ANY EFFORT TO SUPPLANT SUPPORT IS SEEN AS AN EFFORT TO REPLACE, AND THAT IT'S ILL-TIMED. BUT LEADING UP TO THAT LOOKS TO ME LIKE THE TIME WHEN WE SHOULD BE GIVING OUR MOST SYSTEM SUPPORT FOR A FAMILY. >> I REALLY APPRECIATE THAT QUESTION, THINKING ABOUT MOTHERS WHO ARE TAKING ON THE ENORMOUS CHALLENGE OF LEAVING A NEONATAL INTENSIVE CARE UNITS WITH A NEW MAYBE, FRAGILE, WHAT ARE WE DOING, WHAT DO WE NEED TO DO AS A SOCIETY TO INVEST IN SUPPORTING MOTHERS WHO AT THAT POINT ARE REALLY HIGHLY MOTIVATED TO CARE FOR THEIR BABIES, AND WHO I ONLY ALLUDED TO THIS VERY BRIEFLY REALLY ARE IN THE MIDST OF ROARING RAPIDS WHICH ARE THE SOCIAL DETERMINANTS OF HEALTH FACTORS THAT REALLY MAKE IT CHALLENGING FOR THE MOST MOTIVATED CAREGIVERS TO SUPPORT AND NURTURE THEIR BABIES. AND IT JUST SEEMS TO ME THERE ARE TREMENDOUS ETHICAL IMPLICATIONS, NOT TO MENTION ECONOMIC AND POLITICAL RAMIFICATIONS OF NOT SUPPORTING MOTHERS IN THE FAMILIES IN THE WAY THEY NEED TO BE. >> IF I COULD JUST ADD ONE MORE POINT, YOU KNOW, I THINK ACTUALLY BECAUSE OF OUR INCREDIBLE ADVANCEMENT IN HEALTH CARE, WE ACTUALLY HAVE MORE AND MORE CHILDREN WHO ARE LIVING OUTSIDE OF THE HOSPITAL WITH HIGH MEDICAL COMPLEXITY, AND IN FACT THERE'S A PRESSURE TO HAVE THEM LEAVE THE HOSPITAL, AND COMMUNITIES AND FAMILIES ARE TRULY UNDERSERVED AND UNDERRESOURCED IN ORDER TO BEAR THAT RESPONSIBILITY LOVINGLY, BUT STILL THERE'S SUCH LIMITED RESOURCES AVAILABLE. WE HAVE TIME FOR ONE OR TWO MORE QUESTIONS, AND THEN WE'LL HAVE TO HAVE A BREAK. >> GOOD MORNING, ELIZABETH FROM UNIVERSITY OF PENNSYLVANIA. MY QUESTION IS FOR DR. HINDS. AND SOMETHING THAT'S COME UP THROUGHOUT THE CONFERENCE, THE IDEA OF CAREGIVER-FRIENDLY HEALTH SYSTEM. SO I'M WONDERING IF ANYTHING HAS COME OUT IN YOUR WORK ABOUT HOW CLINICIANS ENGAGE WITH PARENTS DURING DECISION MAKING AND END OF LIFE TO HELP THEM ACHIEVE THE CONSTRUCT OF BEING A GOOD PARENT. >> THANK YOU SO MUCH FOR THE QUESTION. SO WHEN WE FIRST DISCOVERED OR WERE TAUGHT ABOUT THIS CONSTRUCT, WE SHARED IT WITH OUR CARE SETTING. AND CLINICIANS TOOK THAT ON THEIR OWN, DID OR DID NOT, AND THEN CAME BACK TO ME TO TALK ABOUT THE PROFOUND CHANGE THAT IT BROUGHT TO THEIR RELATIONSHIP. AND I THINK SOME OF THE QUOTES ABOUT MY COLLEAGUES WHO WERE PHYSICIANS, SAYING I THOUGHT I KNEW MY FAMILIES WELL, I'VE BEEN THEIR LONG-TERM CARE PROVIDER, I FOLLOW THEIR CARING BRIDGE, AND WHEN I ASKED THE GOOD PARENT QUESTION TO THEM, IT CHANGED EVERYTHING THAT I THOUGHT I KNEW. SO CLINICALLY OF VALUE THEN. I'M ADD THE COMMENT WHEN WE DONE FOCUS GROUPS, CARE IN GENERAL, PARENT BEING A SUBGROUP, COULD YOU CREATE A CARE PATHWAY BECAUSE WE'RE AFRAID OF YOU GIVING US INFORMATION WE DON'T KNOW WHAT TO DO WITH, YOU THINK WE CAN HANDLE THIS WITH OUR OWN CLINICAL JUDGMENT MAKING BUT WE WOULD FAR PREFER HAVING GUIDANCE, IF THE PARENT SAYS THIS WE SAY THIS, IF THE PARENT THEN DOES THIS WE DO THIS. AND SO THE SCIENCE IS HEADING TOWARDS THAT BUT WE'RE NOT THERE YET. BUT IT'S INTRIGUING TO ME THAT OUR COLLEAGUES WHO REALLY ARE CLINICALLY EXPERT WOULD PREFER TO HAVE STRUCTURE TO HANDLING NEW INFORMATION LIKE THIS. >> OUR FINAL QUESTION. >> TERRY HAVVAS, UC-DAVIS. I WANT TO THANK THE PANEL FOR YOUR PRESENTATIONS AND ASK I THINK TO ALL OF YOU PERHAPS TO WHAT EXTENT DO DIFFERENCES IN THE CAREGIVERS' COMPETENCE INFLUENCE YOUR WORK AND YOUR INTERPRETATION OF WHAT YOU'RE SEEING, WHETHER IT'S GOOD PARENT OR THE DIABETES BY PROXY OR THE CAREGIVER WHO IS CARING FOR A VULNERABLE INFANT. I'M JUST CURIOUS FROM A HEALTH CARE PERSPECTIVE TO WHAT EXTENT DO CHANGES OR BOLSTERING OF COMPETENCE PERHAPS MAKE A DIFFERENCE IN YOUR WORK. THANK YOU. >> SO THANK YOU FOR THE QUESTION. JUST IN BRIEF, WHAT WE'VE LEARNED IS THAT EVEN FIRST-TIME PARENTS OF AN INFANT BORN WITH LIFE-ENDING CANCER HAS THIS DEFINITION, AND SO DOESN'T HAVE A LIFE EXPERIENCE BUT CERTAINLY HAS THE DEFINITION DRIVING CARE, AND IT IS FOR US THEN TO BE VERY RESPECTFUL OF THAT PERSON AT THIS POINT IN TIME IN THEIR LIFE, AND TO AVOID IN ANY WAY WHAT MIGHT BE SEEN AS REPLACING THEM OR SUBSTITUTING FOR THEM. >> I THINK IT REALLY BRINGS HOME THE IMPORTANCE OF MEETING PARENTS WHERE THEY ARE. YOU KNOW, I THINK ABOUT THE RELATIONSHIPS BETWEEN COACHES AND THE MOTHERS THAT THEY WORK WITH, AND SOMETIMES SUPPORTING THEIR SENSE OF COMPETENCE, THEY ARE ALREADY HIGHLY SKILLED AND REALLY WHAT THEY NEED IS SOMEONE TO SIT WITH THEM AND OBSERVE AND JUST HELP THEM TO SEE WHAT THEY ARE DOING DISCREETLY THAT'S WORKING WELL, AND THAT'S WHERE THEY ARE AND WHAT THEY NEED. AND THERE ARE OTHER PARENTS WHO NEED MORE SUPPORT THAN THAT. THEY HAVE NOT HAD THE KINDS OF EXPERIENCES WHERE THEY HAVE BEEN SUPPORTED OR BEEN ABLE TO SEE OTHER MODELS. AND THINKING ABOUT HOW WE DO THAT IN RESPECTFUL WAYS AND ENGAGE THEM WHERE THEY ARE IS HOW WE NEED TO BE THINKING >> AS WITH ANY POPULATION, THE TRIBAL GROUP WE WERE WORKING WITH, CHOCTAW NATION OF OKLAHOMA, HAS A VARIETY OF LEVELS SOCIOECONOMIC STATUSES AND FAMILY CAPABILITIES AND DYSFUNCTIONS. AND SO WE DID SEE IN OUR WORK A WIDE-RANGING WAY OF RELATING BY THE PARENTS TO THE CHILD THAT SOMETIMES WOULD BORDER ON WHAT ALMOST FELT LIKE NEGLECT, AND SO THIS DIABETES BY PROXY IS NOT SOMETHING THAT EVERY FAMILY AND EVERY PARENT GROUP CAN ENACT. THERE ARE EFFORTS, BUT TO BE THAT INTENSIVE ABOUT IT AS YOU HEARD IN THIS DESCRIPTION IS NOT UNIVERSALLY PRESENT. SO THERE DOES NEED TO BE INDIVIDUALIZING ASSESSMENTS. >> SO THANK YOU, EVERYONE, FOR YOUR VERY INSIGHTFUL QUESTIONS AND TO PANELISTS FOR THEIR VERY THOUGHTFUL RESPONSES, AND WONDERFUL PRESENTATIONS. [APPLAUSE] >> SO THANK YOU. THANK YOU SO MUCH FOR REALLY VERY POWERFUL PRESENTATION, INTRODUCING US TO NEW CONSTRUCTS AND ALSO METHODSOLOGIES, VERY IMPORTANT. AND, AGAIN, AUDIENCE QUESTIONS ABOUT WHAT'S THE SAME AND WHAT'S DIFFERENT, HOW DO WE STRETCH THE SCIENCE TO UNDERSTAND THAT. THANK YOU SO MUCH. WE'RE NOW GOING TO TAKE A SHORT BREAK, SO PLEASE RETURN PROMPTLY TO YOUR SEATS BY 10:40. AND FOR THOSE WHO ARE WATCHING ONLINE, PLEASE COME BACK AT 10:40. SO THANK YOU. WELCOME TO THOSE OF YOU WHO ARE BACK ONLINE WELCOME TO OUR MODERATOR AND PANELISTS. SO, IT'S MY PLEASURE TO INTRODUCE DR. CATHY MOONY. SHE IS A DISTINGUISHED PROFESSOR AND HOLDS THE LEWIS S PERRY AND JANET B PERRY, PRESIDENTIAL ENDOWED CHAIR IN THE COLLEGE OF NURSING AT THE UNIVERSITY OF UTAH. SHE CO-LEADS THE CANCER CONTROL AND POPULATION SCIENCES PROGRAM AT THE HUNTSMAN CANCER INSTITUTE, AND DR. MOONY IS ALSO CO-FOUNDER OF THE HOSPICE AT SALT LAKE. HER PROGRAM OF RESEARCH IS FOCUSED ON THE IMPROVEMENT OF CANCER PATIENT SYMPTOMS AND FAMILY CAREGIVER OUTCOMES AND SHE HAS DEMONSTRATED THE EFFICACY OF AN AUTOMATED TELEHEALTH HOME MONITORING AND COACHING SYSTEM THAT BENEFITS BOTH PATIENTS AND THEIR FAMILY CAREGIVERS. SO, PLEASE HELP ME WELCOME DR. MOONY AND THE PANELISTS WHO WILL BE FOCUSING ON ACUTE SERIOUS ILLNESSES AND CONDITIONS. THANK YOU. [ APPLAUSE ] >> THANK YOU VERY MUCH. GOOD MORNING, EVERYONE. AND WELCOME TO THIS PLENARY SESSION. AS SHE SAID, IT IS ON CARE GIVING RESEARCH FOCUSED ON ACUTE AND SERIOUS ILLNESS AND CONDITIONS. WE ADD OUR APPRECIATION FOR THE VISION AND LEADERSHIP IN BRINGING THIS SUMMIT TOGETHER AND ALL OF US EXCHANGING IDEAS. OUR PANEL SO ENJOYED THE LAST PANEL T BROUGHT US IDEAS WE HAVEN'T THOUGHT ABOUT AND WE HOPE WE ALSO WILL CONTRIBUTE TO EVERYBODY GETTING SOME NEW INSIGHTS IN THINKING ABOUT WHAT WE NEED TO DO IN THE CAREGIVER SPHERE. WE ALSO WANT TO ESPECIALLY THANK DR. KAREN WHO WAS A GOOD SHEPERD TO OUR PANEL IN GETTING US ORGANIZED. AND I AM HONORED TO BE THE MODERATOR, ESPECIALLY OF A PANEL OF SUCH LUMINARIES IN OUR FIELD. IN ORGANIZING THEIR REMARKS, WE HAD A CONFERENCE CALL OR TWO, AND WE HAVE A VERY INTERESTING DISCUSSION THAT DR. LEAFY GOT US GOING ON, ABOUT THE ASSUMPTIONS WE BROUGHT TO OUR RESEARCH AND HOW OFTEN WE FOUND THEY WERE FALSE ASSUMPTIONS AND WHAT WE DID WITH THAT. AND THE INSIGHTS THAT CAME, REALLY, FROM BEING SURPRISED ABOUT OUR FINDINGS. AND I THINK THAT IS SOMETHING WE WANT TO SHARE, AND THEY WILL SHARE A LITTLE BIT IN THEIR PRESENTATIONS ABOUT THEIR RESEARCH. BUT I THINK FOR THIS SUMMIT, IT'S ALSO HELPFUL FOR US TO BE FORWARD-LOOKING AND SAY, WE HAVE A BIG JOB TO DO IN TRYING TO CREATE THE EVIDENCE BASE FOR CARE GIVING, AND WE CERTAINLY WILL HAVE TO BE CREATIVE ABOUT IT. IT REQUIRES TRULY A PARADIGM SHIFT BECAUSE CAREGIVERS AREN'T IN THE HEALTH CARE SYSTEM. SO, WE ARE NOT ONLY TRYING TO PROVIDE EVIDENCE FOR GOOD SUPPORT OF CAREGIVERS AND IMPROVING THEIR CARE, BUT WE ALSO HAVE TO CHANGE OUR DIRECTIONS IN THE HEALTH CARE SYSTEM, IN FACT, TO SEE IS THIS AS PART OF OUR ROLE. SO WE HAVE A VERY LARGE JOB TO DO IN PROVIDING SCIENCE AND CHANGING POLICY AND IN MOVING THE FIELD FORWARD. SO, ONE TIDBIT TO TAKE HOME WAS OUR OWN DISCUSSION ABOUT HOW DO OUR ASSUMPTIONS RIGHT NOW IN THINKING WHAT YOUR NEXT RESEARCH PROJECT IS GOING TO BE, HOW MUCH MIGHT THEY HOLD YOU BACK IF WE ARE NOT WILLING TO ASSUME THAT PERHAPS SOME OF OUR ASSUMPTIONS ARE INCORRECT? AND WHILE WE'LL HAVE A LOT OF HYPOTHESIS THAT WE TEST IN STUDIES WHEN WE LOOK AT OUR FINDINGS, ASSUMPTIONS THAT AREN'T SUPPORTED, SHOULDN'T JUST BE SET ASIDE, THEY SHOULD BE AS FRUITFUL TERRITORY FOR NEW PATHWAYS THAT MAYBE WILL LEAD US MORE RAPIDLY TO WHAT WE REALLY NEED TO LEARN. SO, WITH THAT, I WANT TO MOVE FORWARD IN INTRODUCING OUR PANELISTS AND GAINING THEIR INSIGHTS ON THEIR WORK AND WHAT THEY THINK IS ADVICE TO US IN FUTURE RESEARCH AND DIRECTIONS WE SHOULD BE GOING. AND ONCE WE HEAR ALL OF THE PANELISTS, WE'LL HAVE A FEW QUESTIONS, AND THEN WE REALLY ARE INTERESTED IN DR. LEWIS -- HAS BEEN PULLING ON MY ARM THE WHOLE TWO DAYS, I WANT TO HAVE MORE IF I'M AND QUESTIONS WITH THE AUDIENCE. SO WE'LL MOVE QUICKLY TO YOUR QUESTIONS AND HOW YOU WANT TO JOIN THE DISCUSSION. SO, TO GET GOING, I NOW WOULD LIKE TO INTRODUCE OUR FIRST PANELISTS WHO IS DR. LEWIS. FRANCIS MARCUS LEWIS IS A PROFESSOR IN THE SCHOOL OF NURSING AT THE UNIVERSITY OF WASHINGTON AND SHE SITS AS THE UNIVERSITY OF WASHINGTON MEDICAL CENTER PROFESSOR OF NURSING LEADERSHIP, AND IS ALSO AN AFFILIATE OF THE PUBLIC HEALTH SCIENCES AND CLINICAL RESEARCH DIVISION OF THE FRED HUTCHINSON CANCER RESEARCH CENTER IN SEATTLE. DR. LEWIS, AS WE KNOW, IS AN ONCOLOGY NURSE CLINICIAN AND A BEHAVIORAL SCIENTIST WHO HAS SPENT HER PROFESSIONAL LIFE STUDYING AND IMPROVING CARE FOR FAMILIES IMPACTED BY CANCER AND OTHER SERIOUS CHRONIC MEDICAL ILLNESSES. HER RESEARCH PROGRAM HAS MOVED FROM DESCRIPTIVE TO MUSTY-PHASE II AND 3 RANDOMIZED TRIALS AND ALL OF WHICH ARE BUILT AROUND EVIDENCE AND THEORIES OF HUMAN BEHAVIOR, FAMILY SUBSES THEORY, BIOBEHAVIORAL ADJUSTMENT AND ILLNESS MANAGEMENT. AND THIS RESEARCH HAS BEEN CONTINUOUSLY FUNDED BY NINH AND NCI. SHE IS THE RECIPIENT OF NUMEROUS NATIONAL AND INTERNATIONAL AWARDS AND RECOGNITIONS, AND ONE THING I RECENTLY LEARNED THAT WAS SHE DID A TED TALK, A 14-MINUTE TO THE SECOND TED TALK, AND IT IS BRILLIANT. AND IT DESCRIBES HER RESEARCH AND FINDINGS OVER THE YEARS. SO, I HIGHLY RECOMMEND YOU GOOGLE HER TED TALK AND ENJOY WATCHING IT AFTER THIS SESSION. AND MAYBE IT WILL GIVE YOU SOME THOUGHTS ABOUT A NOVEL WAY TO DISSEMINATE RESEARCH FINDINGS. AND WITH THAT, FRAN -- [ APPLAUSE ] >> WHAT A JOY TO BE HERE AND SHARE THIS MOMENT WITH YOU. THERE ARE SO MANY OF YOU IN THE AUDIENCE WHOSE RESEARCH LITERATURE I HAVE STUDIED AND READ, INCLUDING THE PANEL. SO, I SIT ON THE SHOULDERS OF GIANTS. I WOULD LIKE TO ACKNOWLEDGE THAT THIS IS TEAM WORK, AND THESE ARE THE TEAM MEMBERS THAT ARE CURRENT AND WILL BE THOSE THAT ARE DOING THE RESEARCH THAT IS GOING TO BE REPRESENTED - THIS SLIDE. THESE SLIDES. AND I HAVE NO DISCLOSURES. THANKS TO DR. LEAFY, WE REALLY DID BEGIN WITH ASKING OURSELVES, WHAT WERE OUR BASIC ASSUMPTIONS? IN MY CASE IT WAS MY FIRST RESEARCH STUDY WAS NINR. IT WAS A STUDY OF 125 HOUSEHOLD FAMILIES AND WE FOLLOWED THEM OVER A 16-MONTH PERIOD, MULTIPLE MEASURES, MULTIPLE METHODS. AT THAT TIME WE WERE CASTING THE QUESTION NOT IN TERMS OF SPOUSE CAREGIVERS BUT HOW WERE FAMILIES RESPONDING TO SERIOUS MEDICAL ILLNESS IN THE DIAGNOSED MOTHER? WE AT THAT POINT, AND STILL DO THINK AND THOUGHT, BUT WE DON'T NOW THINK -- WE THOUGHT. THAT SPOUSE CAREGIVERS WOULD EXPERIENCE EARLY-STAGE CANCER AS A DELIMITED STRESSOR. THAT THEY WOULD MOBILIZE EFFECTIVELY TO COPE WITH THE CHANGING ILLNESS-RELATED DEMANDS, THAT THEY WOULD KNOW WHAT TO DO AND SAY TO BE SUPPORTIVE, AND THEY WOULD PUT HIGHEST PRIORITY IN MANAGING THE PATIENT'S SYMPTOMS. AND SOME OF THOSE ASSUMPTIONS CAME FROM THE LITERATURE AT THAT POINT, THE LITERATURE WAS CALLED "THE DEMANDS OF CARE GIVING." OR CARE GIVING BURDEN. WHAT WE DISCOVERED ARE THESE SETS OF STATEMENTS, AND I WILL WALK YOU THROUGH SLIDES THAT SHOW YOU DATABASE STUDIES INVOLVING THOUSANDS OF PEOPLE THAT SHOW THAT THE INITIAL ASSUMPTIONS WERE NOT TRUE. SO, EARLY ON, WE STARTED TO GET CLEAR MESSAGES FROM CAREGIVERS THAT THIS STAGE 0-3 BREAST CANCER STAGE OFTEN 0-2, A OR B WAS A HUGE, HUGE PROBLEM, EVEN THOUGH IT WAS POTENTIALLY CURABLE DISEASE. THEY FEARED THEY HAD NO CONTROL AND THEIR WORLDS WERE SHATTERED. THEY WERE NOT JUST SHAKEN. THIS WAS NOT JUST A SIMPLE DISLIMITTER STRESSOR. THEY WERE SHATTERED. THEY FEARED LOSING THEIR PARTNER TO THE ILLNESS EVEN THOUGH THE PEOPLE WE WERE STUDYING WERE IN THE BEST MEDICAL TREATMENT CENTERS IN THE PACIFIC NORTHWEST OR OTHER PARTS OF THE COUNTRY. 22-33% REACHED OR EXCEEDED CLINICAL CUT OFF SCORES ON STANDARDIZED MEASURES OF ANXIETY OR DEPRESSED MOOD OR BOTH IN ADDITION, ANOTHER PERCENTAGE ALSO HAD MALL ADJUSTED MARRIAGES NOT FOR A DISILLUSION OR DIVORCE BUT HIGH-TENSION IN THE MATERIAL RELATIONSHIP. AND I'LL GET TO THAT IN A LITTLE BIT MORE. AND THEY FELT SUBSTANTIALLY UNDER SERVED BY WELL-MEANING PARTNERS -- PROVIDERS. SO WHAT I'LL PULL NOW IS A STUDY WE DID AND GOT PUBLISHED IN THE JOURNAL OF CLINICAL ONCOLOGY NE2008. WHAT WE DID IS THERE, AND I'LL CALL OUT THE MAIN RESULTS, WE INTERVIEWED AND MEASURED, AND THIS IS QUANTITATIVE MEASURES, ABOUT 125 SPOUSE PATNERS. IN THAT, WE TESTED A SET OF THEORETICAL VARIABLES AS WELL AS EMPIRICAL VARIABLES, THAT WERE IN THE LITERATURE AND WHAT THEY SAID WOULD PREDICT DEPRESSED MOOD. DEPRESSED MOOD. AND WHAT YOU HAVE HERE ARE NOT ALL OF THE 11 THEORETICAL VARIABLES BUT THOSE THAT WERE SIGNIFICANT. BUT ONE OF THEM WAS, FOR EXAMPLE, CONCERN ABOUT HIS GIVING UP AND IN THIS CASE, IT WAS MALE PARTNERS. HIS GIVING UP HIS PRIVATE TIME OR HIS BOY TIME, OR RELINQUISHING OPPORTUNITIES FOR HIM TO DEVELOP AS A MAN. AND INSTEAD, WHAT HAPPENED WAS A STRONG PICTURE IN THE RED VARIABLES, THOSE THAT SIGNIFICANTLY PREDICTED HIS DEPRESSED MOOD. WHAT WE SEE IS ONE PROTECTIVE FACTOR THAT IF THEY ENTER THE DIAGNOSIS WITH A HIGH SCORE ON THE ADJUSTMENT SCALE OF 100 OR MORE, IT'S PROTECTIVE AGAINST DEPRESSED MOOD. BUT EVERY OTHER VARIABLE SHOWS THAT THOSE WERE THE STRESS PREDICTORS OF HIS DEPRESSED MOOD. JOB-RELATED CONCERNS WAS NOT ABOUT LOSING HIS JOB. JOB-RELATED CONCERNS WAS ABOUT HIS PREOCCUPATION AND WORRY WITH HER IN WORK, SUCH THAT EVEN THOUGH SHE WAS ACTIVELY BEING TREATED FOR HER DISEASE, HE WAS PREOCCUPIED AND WORRIED SHE WOULDN'T PULL THROUGH IT. OR SHE WASN'T GIVEN THE RIGHT MEDICINE, OR THE DOCTORS DIDN'T FIGURE IT OUT RIGHT. THOSE ARE THE MEASURES RELATED TO THE JOB WORRIES. CONCERN ABOUT WIFE WAS TOTAL CONCERN THAT SHE WAS GOING TO DIE FROM THIS DISEASE. EVEN THOUGH PROVIDERS CAREFULLY COMMUNICATED IT WAS EARLY-STAGE, TREATABLE, POTENTIALLY LIFE-TIME CURABLE DISEASE. EXCLUSION OF THE TEAM WAS THAT THEY WOULD IN INTERVIEWS EXPLAINED LATER, THEY FELT THE FOCUS WAS ONLY ON THEIR WIFE AND YET THEY WERE IMPACTED SERIOUSLY BY THE EXPERIENCE. THEY WEREN'T EVEN OFTEN BROUGHT INTO THE EXPERIENCE OF THE DISCUSSIONS WITH THE PROVIDERS. AND THEN THE ILLNESS-RELATED UNCERTAINTY WAS NOT THE UNCERTAINTY OF THE UNCERTAINTY THEORY. RACKETER IT WAS THE UNCERTAINTY OF THEIR FUTURE AS A COUPLE, THEIR LIFE PLANS, NOT COMING TRUE, NOT EVEN KNOWING SHOULD THEY REMODEL THE HOUSE. THOSE TYPES OF UNCERTAINTY. BUT WE WEREN'T STOPPING THERE. WE WANTED TO TEST THE FIT OF THOSE PREDICTORS AND THIS TIME THE FIT WAS TESTED NOT ON A CONTINUOUS VARIABLE BUT ON A CLINICAL SCORE TO SEE, COULD WE& PREDICT BY JUST THOSE FOUR VARIABLES, SIGNIFICANT DEPRESSION IN THE SPOUSE PARTNER AT ENTRY INTO PROVIDER SYSTEM. AND WHAT YOU SEE IS THE OVERALL CLASSIFICATION ACCURACY IS QUITE HIGH. WE ARE BETTER AT PREDICTING THOSE WHO WILL NOT GET DEPRESSED AND WE ARE PREDICTING 51.3% OF THOSE THAT DID GET CLINICALLY DEPRESSED. THEN WE TURNED TO ANOTHER EXAMPLE OF THE SLIDE WHERE THE ASSUMPTION OF A DELIMITED STRESSOR IS CHALLENGED. A NUMBER OF QUALITATIVE INTERVIEWS ALL OF WHICH THESE SLIDES EACH REPRESENTING ITS OWN PUBLICATION. THIS CHARACTERIZES THE EXPERIENCE OF A CAREGIVER OF FAILING THAT SOMEHOW HIS NOT BEING THERE OR PROTECTING HER, THE THEME OF PROTECTION THAT CAME FROM THE LAST PANEL AS WELL. I FEEL AS THOUGH I'M NOT NECESSARILY DOING THE JOB THAT I'M HERE TO DO TO HELP HER AND TO PROTECT HER. NONE OF THE SLIDES BY THE WAY, ARE EXTREME CASE DATA. WHAT ELSE DO WE DISCOVER? WHAT ELSE? REMEMBER ONE OF THE SLIDES ASSUMPTIONS WAS CAREGIVERS WOULD KNOW HOW TO COPE WITH THE ILLNESS-RELATED DEMANDS AND MOBILIZE. THAT WAS THE TRADITION OF THE EARLY STUDIES WE DID AND WE HAVE JUST CONFIRMED THAT AS A GOOD FIT WITH OUR DATA OVER AND OVER AND OVER AGAIN. WHAT HAPPENED WAS THAT THEY WERE ENGAGED IN COPING BEHAVIORS THAT WERE DISARTICULATE WITH THE ILLNESS-RELATED PRESSURES. AND THEIR BEHAVIOR WAS NOT ORGANIZED IN CAREGIVERS AROUND THE ILLNESS DEMAND, BUT AROUND THE TENSION THAT GOT GENERATED IN THE HOUSEHOLD BECAUSE OF THE ILLNESS. AND THIS CLASSICALLY, THIS WAS ONE OF OUR FIRST PAPERS WHERE WE WERE -- THIS IS 96. THIS WAS 125 HOUSEHOLDS WHERE THIS IS A FITTED MODEL WHERE I REDUCED IT FROM THE COMPLEX MODEL DOWN TO THE SIGNIFICANT PREDICTORS. AND WHAT WE SEE HERE IS THAT THERE IS NO RELATIONSHIP. AND THIS IS THE PATTERN OVER MANY STUDIES BETWEEN WHAT THE PRESSURES ARE IN THE ILLNESS REGARDLESS OF THE TYPE OF ILLNESS DEMAND MEASURE I HAVE GOT, AND THE BEHAVIOR OF THE HOUSE HOLD, INCLUDING THE SPOUSE REPORTED BEHAVIOR TO COPE WITH THAT ILLNESS. AND WHAT WE SEE INSTEAD, IS WHAT WE CONSIDER A TRIANGLE WITH DIFFICULTY WHERE, WE'LL GET TO THAT IN ANOTHER SLIDE. THE ILLNESS PRESSURES CAUSE THE SPOUSE PARTNER TO BEGIN TO BELIEVE HIS MARRIAGE IS NOT DOING WELL. IT'S NOT THAT HE'S NOT DOING WELL. HIS WHOLE RELATIONSHIP WITH HIS WIFE IS NOT DOING WELL. AND IF THAT HAPPENS, WHAT HAPPENS IS IT SIGNIFICANTLY IMPACT THE COPING BEHAVIOR OF THE HOUSE HOLD AGAIN AND SIGNIFICANTLY EFFECTS THE HOUSEHOLD FUNCTION. AND I HAVE CHECKED THIS PATH HERE USING CONFIRMATORY FACTOR ANALYSIS TO MAKE SURE THOSE MEASURES ARE ONLY LOADING ON THOSE CONCEPTS SO THERE IS NO CONTAMINATION BETWEEN THE MARRIAGE AND ADJUSTMENT VARIABLE AND THE FAMILY FUNCTIONING HOUSEHOLD MEASURES. AND SO, NOT WANTING TO RELIE ON ONE STUDY, WE DID FOUR USING DATA FROM DIFFERENT STUDY SAMPLES TO TEST WHAT WE CONSIDERED A CORE MODEL OF THE HOUSE HOLD'S FUNCTIONING WITH CANCER AND A DIAGNOSED MOTHER. AND WHAT YOU FIND IN THIS SLIDE IS THAT THERE ARE A NUMBER OF ARROWS THAT WOULD BE PREDICTED THAT HAD NO COLOR ON THEM. THAT IS THE WHITE ARROW DENOTES WHAT THE THEORY OR THE ASSUMPTIONS AND THE LITERATURE WOULD SAY AND THE COLORS OVER LINE THE WHITE ARE THOSE THAT WE FIND RESULTS. THAT SHOWED US AND CONFIRMED AGAIN THE TRIANGLE OF DIFFICULTY. SO THE ILLNESS DEMANDS CAUSE THE DEPRESSED MOOD, CAUSED THE MARRIAGE TO BE JUDGED AS IN TROUBLE, NEGATIVELY EFFECTS COPING BEHAVIOR, AND CAUSES THE FAMILY TO NOT FUNCTION AS WELL. BECAUSE THE FOCUS TODAY IS ON SPOUSE CAREGIVER RESEARCH, WE WILL NOT GO INTO THE EFFECTS ON THE CHILDREN AND THE RELATIONSHIPS. THAT IS ANOTHER PROGRAM OF OUR RESEARCH. SOMEBODY SAYS TO ME, I'M A CLINICIAN AS WELL AS A SCIENTIST. THEY'LL SAY, FRAN, JUST GIVE THE FAMILY TIME. THEY'LL FIGURE IT OUT. JUST GIVE THEM TIME. THEY NEED THEIR SPACE TO FIGURE OUT AS A HOUSEHOLD HOW TO OPERATE. AND ONE DAY I WAS WALKING DOWN THE SOUTH -- IN THE -- AND I'M GOING TO TEST THAT ASSUMPTION. SO WHAT THAT IS, IS A TEST OF THE ASSUMPTION. THIS IS PUBLISHED IN JAMA. AND WHAT HAPPENS IS, OVER TIME ANALYSIS WHERE YOU HAVE TIME 1, 2, 3 AT FOUR-MONTH INTERVALS AND ALL THESE ARE THE CORE VARIABLES IN THE MODEL I SHOWED YOU. WE HAD THIS CORE MODEL WE KEEP TRYING TO TEST AND GET RID OF OR JUST CONFIRM OR CONFIRM. AND WHAT HAPPENS OVER TIME IS, YOU DO HAVE CORRELATION OVER TIME SO ILLNESS DEMANDS ARE PRETTY STABLE OVER TIME. DEPRESSED MOOD VARIES ENORMOUSLY. MATERIAL ADJUSTMENT PRETTY STABLE OVER TIME. BUT THEN WHEN YOU LOOK AT CROSS LAG VARIABLES. COPING BEHAVIOR AT TIME 1 EFFECT ILLNESS PRESSURES SO THEY GET DIMINISHED? LOOK AT THE SLIDES. NO EFFECT. NO CHANGE ON HOW THEY ARE COPING TO DIMINISH, RECONFIRMING THE CAREGIVERS IN HOUSEHOLDS WERE NOT COPING WITH THE ILLNESS PRESSURES. WHAT DID WE DISCOVER? CAREGIVERS, WHEN GIVEN OPPORTUNITIES TO WORK ON ANY ELEMENT OF MANAGING THE ILLNESS, CHOSE TO WORK ON THEIR COUPLE RELATIONSHIP, AND THEY PRIORITIZED THAT OVER 27 OTHER CHOICES. THEY DID NOT KNOW WHAT TO DO OR SAY TO BE SUPPORTIVE EVEN IN LONG-TERM AND WELL-ADJUSTED MARRIAGE. MANY OF OUR STUDIES HAD STUDY SAMPLES THAT RANGE FROM SEVEN MONTHS AND ON BUT AVERAGE AGE OF MARRIAGE OR PARTNERSHIP WAS 15, 13-15 YEARS WITH A VERY SMALL STANDARD DEVIATION AND CAREGIVERS WANTED TO BE A COUPLE, AS A COUPLE, NOT JUST A COUPLE WITH A CANCER. SO WHAT YOU HAVE HERE ARE TWO STUDIES THAT SHOWED US EVIDENCE OF THE IMPORTANCE OF THE COUPLE RELATIONSHIP AS THEIR PRIORITY. AND AGAIN, I SAY THIS IS NOT ABOUT DIVORCE. THIS IS NOT ABOUT DISILLUSION. THIS IS ABOUT FAMILY SYSTEMS DYNAMICS WHERE TENSION AND THE DIE ADD SUPPORTS RESERB 8 IN THE SYSTEM WHETHER THERE IS NO SYSTEM FOR THAT. I'M NOT TALKING PSYCHOTHERAPY. I'M NOT A PSYCHOTHERAPIST. I'M A BEHAVIORAL SCIENTIT AND A MED SURGE CLINICIAN. SO, THIS STUDY SHOWED US IN INTERVIEWS, WHEN THEY WERE GIVEN CHOICES OF 28 TOTAL AREAS IN WHICH TO CHOOSE, COUPLES, SPOUSES CHOSE TO WORK ON THEIR RELATIONSHIP WITH A NURSE COACH IN THREE SESSIONS. 47% OF COUPLES -- AND THIS SEMINOLE STUDY WHERE WE LOOKED AT LOCAL RECURRENT BREAST CANCER, NOT METASTATIC. WHAT YOU WERE THEY DEALING WITH? AND OF THOSE, EVEN THOUGH THEY SAID THEY WERE DOING WELL, IN DIFFERENT WAYS OF THE ANALYSIS USING THIS THEORY, 47% REACHED OR EXCEEDED LEVELS OF MALL ADJUSTMENT ON EITHER THE DIE ADDIC ADJUSTMENT SCALE, ANXIETY OR DEPRESSED MOOD. ANOTHER STUDY JUST OUT RECENTLY -- 2010, COMING TO GRIPS WITH BREAST CANCER ROUNDED THEORY STUDY, SIX MONTHS OR LESS IN DIAGNOSIS WITH THE SPOUSE PARTNER AND WHAT IS HIS LIVED EXPERIENCE WITH THAT ILLNESS? THEY WERE OVERWHELMED WITH THE PATIENT'S EMOTIONS AND DIDN'T KNOW WHAT TO DO WITH THEM. THEY WANTED TO BE PRESENT FOR HER AND DIDN'T KNOW HOW. AND I'LL LET YOU JUST TAKE A MOMENT, PLEASE, TO READ THIS EXACT QUOTE FROM ONE OF THE CAREGIVERS. ONE COULD STEP BACK AND SAY, SHE DIDN'T HAVE A FRAME FOR THOSE EMOTIONS. DIDN'T KNOW HOW TO NEUTRALIZE THEM. DIDN'T HAVE THE BEHAVIORAL REPERTOIRE TO DO IT AND AGAIN THESE ARE LONG-TERM RELATIONSHIPS. TWO OTHER QUOTES: SO WE DESIGNED A TRIAL. IT WAS FUNNELEDDED BY NCI. WE ARE WRITING UP THE RESULTS OF THIS TRIAL RIGHT NOW. I HOPED TO HAVE IT IN THE JOURNALS BEFORE THIS TALK AND I HAVEN'T BEEN HAPPY WITH THE DISCUSSION OF THE RESULTS SECTION. FIVE SESSIONS, TWO-WEEK INTERVALS AND PATIENT EDUCATOR MANUAL AND FULLY SCRIPTED. WE WANTED TO V. AN INTERVENTION THAT COULD BE DONE WITHOUT DOING ASSESSMENT OF SYMPTOMS. WE WANTED IT TO BE ACROSS-THE-BOARD APPROPRIATE FOR SOCIAL WORKERS, CLINICAL PSYCHOLOGISTS AND ANY PROVIDER IN THE HEALTH CARE SYSTEM AND THAT IS WHAT THAT TRIAL IS. AND WE CALL IT HELPING OR HEAL. THE WORDS, HELPING OR HEAL, ARE COMING FROM INTERVIEW DATA WHERE IF WE WOULD OFFER A PROGRAM FOR CAREGIVER SUPPORT, THE MALE AND WILL FEMALE CAREGIVERS WANTED US TO FOCUS ON THE PATIENT SO WE USED THAT PHRASE TO BRING THEM IN BECAUSE THAT'S HOW THEY FRAME IT. THESE ARE THE SESSION NAMES. THESE WORDS OF THE SESSIONS ARE ALL BASED ON INTERPRETATIVE DATA WE HAVE FROM INTERVIEW STUDIES. AND THIS WAS A THEORETICAL MODEL OF THE INTERVENTION. SO WHAT YOU'LL SEE HERE IS, THE INTERVENTION HAS DIRECT EFFECTS ON THE COMMUNICATION SKILLS, QUALITY OF THE MATERIAL COMMUNICATION AND THE SPOUSE SELF CARE SKILLS AND DEPRESSED MOOD MANAGEMENT. AND THEN THERE ARE DIFFUSION EFFECTS AS A RESULT. BUT NOTICE RIGHT HERE, THAT WE ARE TRYING TO MEDIATE BY EQUIPPING THE SPOUSE CAREGIVER WITH COMPETENCY THAT HE OR SHE CAN PUT IN THEIR PACKAGE AND GO HOME WITH. WE ALSO EVALUATE THE OUTCOMES AND THE WIFE AND I'M GOING GIVE SOMEHOW EXAMPLE RESULT SLIDES THAT TYPIFY THE PATTERNS. ALL OUTCOMES IN THE SPOUSE-MALE CAREGIVERS WERE SIGNIFICANT AT EXIT FROM INTERVENTION AND WERE ASSESSED AT 3, 6 AND 9 MONTHS AND MOST BUT TWO WERE SUSTAINED AT 9 MONTHS, A SIGNIFICANTLY DIFFERENT THAN AN ALTERNATIVE TREATMENT CONTROL GROUP. NOT A TENSION-CONTROLLED GROUP BUT AN ALTERNATIVE TREATMENT CONTROL GROUP. AND WHAT YOU FIND HERE IS THE PATTERN. THIS IS SPOUSE ANXIETY. SIGNIFICANT TENDING TO DIMINISH IN SIGNIFICANCE ON OCCASION FOR BUT IMMEDIATELY DECREASED ANXIETY THAT NEVER GOES BACK UP AND THEN ALSO THE CONTROL GROUP DIMINISHING, STABILIZING AND FALLING DOWN. ALWAYS THAT DIFFERENTIAL IS DIFFERENT IN THE BENEFIT OF THE INTERVENTION ARM. THIS ONE IS HIS CAREGIVER SKILLS. I SAY HE, BUT WE RECRUITED FOR BOTH GENDERS AND WE DID NOT GET IN THIS PARTICULAR TRIAL, FEMALE CAREGIVERS. WE HAVE DONE OTHER STUDIES THAT INCLUDE FEMALE CAREGIVERS, SAME-SEX RELATIONSHIPS. THE CAREGIVERS SELF CARE SKILLS ARE SO HAPPY FOR US, BECAUSE THE WORLD SAYS YOU CAN NOT GET, FORGIVE ME, A MAN -- I HAVE FIVE SONS -- YOU CAN NOT GET A MAN TO CHANGE HIS SELF CARE BEHAVIOR. HE WILL PUT IT ON HOLD. AND WE HAVE DEVELOPED IN THE SESSIONS HOW TO HELP HIM GAIN THAT SELF-CARE BEHAVIOR. AND IT DOESN'T DIMINISH AT ALL. CONTROL GROUP BARELY PLATEAUS. NOW THE QUALITY EVER HIS MATERIAL COMMUNICATION SAME PATTERN. POSITIVE, SIGNIFICANT, OVER TIME. QUALITY IN THE SUBSCALE OF BEING ABLE TO LET HER EXPRESS SAD THOUGHTS WHICH IS A VERY HIGH THREAT FOR HIM, SIGNIFICANT. AND I WANT YOU TO SEE SOMETHING THAT MADE US CLINICALLY SAD WHICH IS IN THE ABSENCE OF INTERVENTION, THE CONTROL GROUP DOESN'T JUST STABILIZE, THEY DEGRADE AND THAT'S WHAT THE PATTERN WAS IN THE OUTCOMES FOR MANY OF THE VARIABLES. DIM NITION DIDN'T JUST HAPPEN. THE DEGRADING IN THE ABSENCE OF INTERVENTION HAPPENED. WHAT ABOUT THE WIFE'S VIEW OF HIS SUPPORT? NOW INTERPARTIAL SUPPORT IS LABELED BUT IT'S NOT GENATIONAL SUPPORT. IT ISN'T ABOUT SOCIAL NICETIES. IT'S ABOUT INTERACTIONAL, VERBAL, INTERACTIONAL SUPPORT OF A PARTICULAR SET OF BEHAVIORS. AND WE THINK NOW WE HAVE TESTED THOSE NOW ON FOUR OTHER TRIALS. THIS IS THE BIG ONE RIGHT NOW FUNDED. IT SEEMS TO BE THE CORE SET OF BEHAVIORS THAT IF WE CAN ASSIST THE CAREGIVER TO GAIN THOSE AND HOLD THOSE, IT IS PREVENTIVE OF PATHOLOGY LONG-TERM. I WANT YOU TO SEE IS THIS. SIGNIFICANT CHANGES AND THEY DO NOT DIMINISH IN THE WIFE AND WITH THE WIFE WITHOUT TREATMENT AND THE SPOUSE DEGRADING AGAIN. THE VERY THING THAT WE DON'T WANT TO SEE. SO WHAT HAVE WE LEARNED FROM THIS PARTICULAR ONE TRIAL? A FULLY MANUALIDES 5-SESSION INTERVENTION, A LITTLE HELP FROM MY FRIENDS DOSE D A LOT. YOU CAN SEE WHAT IT CHANGES ON THE VARIABLES, 5 SESSIONS SIGNIFICANT CHANGES ON ALL OF THOSE VARIABLES. AND THEN REGARDLESS OF LENGTH OF MARRIAGE, AGE, EDUCATION OR INCOME, SPOUSE CAREGIVERS WANT TO GAIN AND INTERACT AND DRAW OUT AND READ AND SUPPORT THEIR WIVES AND IN THE ABSENCE OF INTERVENTION, 19LONG-TERM MARRIAGES, THEY DON'T AND CAN'T DO IT. AND BY CHANGING SPOUSE CAREGIVER BEHAVIORS, WE HAVE BENEFITED -- I FORGOT TO SAY, THE INTERVENTION FOR HELPING OR HEAL IS ONLY GIVEN TO THE SPOUSE CAREGIVER. THE WIFE DOES NOT PARTICIPATE. HE ENGAGES IN SKILL ATTAINMENT AND COMPETENCE BUILDING AND TAKES THAT INTERACTION AND GOES HOME WITH TO HIS WIFE AND SHE BENEFITS BY HIM BEING PART OF HER HEALING. SO, WHAT DO I RECOMMEND? AND THIS IS WHAT DR. MOONY WAS ASKING US TO THINK ABOUT AND SO WE HUT SOME SLIDES FOR THIS. WE REALLY -- SLIDES BY, SAID THIS. WE HAVE GOT TO STOP PATHOLOGIZING THE CAREGIVER BEHAVIOR. AND MY POSITION IS, WE HAVE GOT TO STOP RELYING ON THERAPY. THERAPY FOR ME INCLUDES MANIFEST LATENT-MEANING FAMILY OF ORIGIN, INTERGENERATIONAL ISSUES. WE ARE TALKING ABOUT VERY SKILLED FOCUSED MANAGEMENT OF THE ILLNESS BEHAVIOR. WE NEED TO READ PAST THE PROBLEM AS SELF-MANAGEMENT AND ASSISTING THE DIE ADDS. WE NEED TO DEVELOP MINIMUM, MAXIMUM OR MOT RAD AND INTENSIVE INTERVENTIONS. ONE DOESN'T FIT ALL. WE HAD THREE SPOUSE CAREGIVERS COME INTO THIS TRIAL WHO NEEDED MORE AND WE KNOW THAT BECAUSE THEY TOLD US THAT. THEY NEEDED THEIR OWN THERAPY. HOW IS MY TIME? ALL RIGHT. SO I WILL STOP. AND THEN THE LAST SLIDE I'LL LET YOU JUST READ. THANK YOU VERY MUCH. I DIDN'T GET A BUZZER. I'M SORRY. THANK YOU. [ APPLAUSE ] >> WE COULD LISTEN TO YOU ALL DAY, FRAN. IT'S A JOY TO ALWAYS HEAR YOUR WORK. SO THANK YOU TO DR. LEWIS AND NOW WE WILL HEAR FROM OUR SECOND PANELIST, DR. LEVI WHO I MISPRONOUNCED HIS NAME INITIALLY. DR. BENJAMIN LEVI IS AN M.D., PH.D. AND A PRACTICING PRIMARY CARE PEDIATRICIAN AT THE PENN STATE COLLEGE OF MEDICINE CHILDREN'S HOSPITAL. IN ADDITION, HE HAS TAUGHT BIOETHICS COURSES AND CONDUCTED CLINICAL ETHICS CONSULTATIONS. HIS SCHOLARSHIP HAS FOCUSED ON CONCEPTUAL AND APPLIED ASPECTS OF RESPECTING PATIENT AUTONOMY AND MEDICAL DECISION-MAKING. DR. LEVI'S RESEARCH HAS BEEN FUNDED BY THE NATIONAL INSTITUTE OF NURSING RESEARCH, THE AMERICAN CANCER SOCIETY, THE GREEN WALL FOUNDATION AND THE NATIONAL INSTITUTED FOR CHILD HEALTH AND HUMAN DEVELOPMENT. DR. LEVI IS ALSO THE RECIPIENT OF NUMEROUS AWARDS IN ALL THREE OF THE TRIEFFECTED AREAS FOR HIS RESEARCH, FOR HIS CLINICAL WORK, AND AS A TALENTED EDUCATOR. DR. LEVI. [ APPLAUSE ] >> DR. LEVI: THANK YOU AND THANK YOU FOR YOUR INTEREST IN THIS. WE REALLY WANT TO HAROLD THE WORK THAT IS DONE AND THE SUPPORT FOR IMPORTANT RESEARCH. DID SOMEONE TAKE THE CLICKER? [ LAUGHS ] I'M KNOWN THAT I CAN BREAK ANY TECHNOLOGY BUT I COULD AT LEAST USE IT. I WANT TO BEGIN BY SAYING THAT WE -- I'M PRESENTING ON BEHALF OF MY LARGER TEAM. I HAVE WORKED CLOSELY ARGUING WITH MY COLLEAGUE, MICHAEL GREEN, FOR OVER 31 YEARS AND THIS IS VERY MUCH A TEAM EFFORT. MIKEAL AND I HAVE A CONFLICT OF INTEREST IN SO FAR AS WE ARE CREATORS OF THE DECISION AID I'M GOING TO TELL YOU ABOUT MAKING WISHES KNOWN AND HELPING TO DEVELOP A VERSION OF OUR DECISION-MAKING TO BE SCALED TO A BROADER POPULATION T IS AN INTERESTING QUESTION THAT PEOPLE MAY WANT TO GET INTO LATER BECAUSE IT RAISES SOME IMPORTANT QUESTIONS. SO BY WAY OF CONTEXT, JUST TO REMIND YOU, WHEN END OF LIFE DECISIONS NEED TO BE MADE, OVER 7-10 PEOPLE PATIENTS LACK DECISION-MAKING CAPACITY. WHILE BY CONTRAST, ONLY 3-10 PEOPLE CREATE ADVANCED DIRECTED I WAS. THERE ARE REASONS FOR THIS. CLINICIANS ARE HESITANT RAISE THE TOPIC OF ADVANCED CARE PLANNING. THEY FEEL IT TAKES TIME THAT THEY DON'T HAVE AND WORRIED IT WILL DECREASE HOPE OR ADVERSELY EFFECT ANG SIGHT WHICH SOME OF OUR WORK HAS SHOWN IT DOES NOT. AND THEY ARE OFTEN WAITING FOR THE PATIENT OR THE FAMILY TO RAISE THE ISSUE. THE PROBLEM IS THAT THE ALTERNATIVE TO EFFECTIVE ADVANCED CARE PLANNING IS TO RELY ON OTHER PEOPLE TO DECIDE, WHICH WE KNOW IS NOT NECESSARILY EFFECTIVE WHEN WE LOOK AT CLINICIANS AND FAMILY CAREGIVERS, WE FIND THAT TWO THIRDS OF CASES DO THEY ACTUALLY PREDICT WHAT PATIENTS WOULD WANT. SO, WE SET OUT TO CREATE AN EVIDENCE-BASED TOOL FOR ADVANCED CARE PLANNING AND TO EVALUATE IN TERMS OF EFFICACY, IF IT'S ACCURATE AND IS IT HELPFUL, AND WE BEGAN BY LOOKING AT, IS IT HELPFUL TO PATIENTS? I'LL SHOW YOU DATEDDA ON THAT IN A MOMENT. AND THEN WE TURN TO CLINICIANS. BUT WE ALSO EVENTUALLY CAME TO REALLY APPRECIATE THAT WE NEED TO LOOK AT FAMILY CAREGIVERS BECAUSE IT'S THE FAMILY CAREGIVERS THAT NOT ONLY THE PATIENTS THEMSELVES BUT CLINICIANS RELY ON AND TURN TO IN ORDER TO MAKE DECISIONS. SO, WHAT WE CREATED WAS A INTERACTIVE TOOL. IT STARTED ON CD AND NOW IT'S ON LINE. WHAT IT DOES IS IT IS INTENDED TO SIMULATE THE KIND OF INTERACTION THAT A PATIENT WOULD HAVE WITH AN INFORM CLINICIAN. IT'S MULTIMEDIA PROVIDES EDUCATION AND A LOT OF INTERACTIVE CONSIDERSES AND YOU CAN SEE IT ON LINE. IT'S AVAILABLE FOR FREE. IT'S INTENDED TO BRO MOAT REFLECTION AND TO ENCOURAGE COMMUNICATION. YOU SEE AT THE TOP OF THE VARIOUS TABS THERE ARE DIFFERENT SECTIONS. THIS IS ABOUT HOW TO CHOOSE A SPOKESPERSON AND USE THIS QUESTION AND ANSWER SCENARIOS. AND THEN IT GOES THROUGH OTHER COMPONENTS OF ADVANCED CARE PLANNING INCLUDING EXPLORING YOUR VALUES AND ALSO PARTICULARLY LOOKING AT MEDICAL WISHES. YOU SEE THAT ON THE LEFT MARGIN HERE IT IDENTIFIES THE DIFFERENT KINDS OF MODALITIES THAT ARE OFTEN INTRODUCED AT THE END OF LIFE. AND IT HELPS PEOPLE UNDERSTAND THROUGH VIDEOS AND INFORMATIVE NARRATIVES, ABOUT WHAT ARE THE IMPLICATIONS OF THESE DIFFERENT KINDS OF INTERVENTIONS BUT IT ALSO TALKS ABOUT THE MEDICAL CONDITIONS THAT PRECIPITATE THE NEED FOR THIS. SO, WE LOOKED IN PART FOR US TO SEE, DOES THIS HELP PATIENTS? THE PROGRAM ITSELF, WHEN THE USER IS COMPLETED IT, IT GENERATES FOR THAT USER AN ADVANCED DIRECTIVE DOCUMENT. IT HAS GENERAL AND SPECIFIC WISHES AND WHEN WE EVALUATED THOSE DOCUMENTS WITH OVER 1000 PATIENTS THUS FAR, AND THIS INCLUDES HEALTHY VOLUNTEERS, AS WELL AS MANY POPULATIONS WITH ADVANCED CANCER AND HEART DISEASE, LUNG DISEASE, ADVANCED KIDNEY DISEASE IS WITH ALS, THEY WERE VERY SATISFIED. THEY LIKED THE PROGRAM. THEY FOUND IT ENGAGING. WE FOUND THAT IT INCREASED THEIR KNOWLEDGE ABOUT END OF LIFE DECISIONS AND THEY REPORT TODAY HELPED PREPARE THEM FOR DISCUSSIONS WITH OTHERS. BOTH FAMILY MEMBERS AND CLINICIANS. AND ALSO WE SORT OF TO ADDRESS THE CONCERN ABOUT HOPE AND ANXIETY, WE PUBLISHED A PAPER A FEW YEARS AGO SHOWING THE INTERVENTION DID NOT DECREASE PATIENTS SENSE OF HOPE OR ADVERSE EFFECT OR ANXIETY. WE LOOKED AT WHAT DOES IT DO FOR CLINICIANS. IN ORDER TO DOE THAT, WE EXAMINED WHETHER A DECISION AID WOULD HELP CLINICIANS BETTER UNDERSTAND PATIENTS WISHES BY RECRUITING PATIENTS FROM A MULTI-DISCIPLINARY ALS CLINIC. WHERE THEY SEE VARIOUS PATIENTS COME IN EVERY THREE MONTHS AND THEY SEE CLINICIANS, A VARIETY OF CLINICIANS ACROSS THE MORNING AND THEN LATER IN THE AFTERNOON, THAT MULTIDISCIPLINARY TEAM COMES TOGETHER TO DISCUSS THE PATIENTS AND THE CARE PLAN FOR THEM. AT THESE MEETINGS, WHAT WE DID WAS INTRODUCED TO THE CARE TEAM SEVERAL SCENARIOS, HYPOTHETICAL SCENARIOS, AND WE ASKED THEM TO CONSIDER THESE SCENARIOS FOR EACH OF THE PATIENTS WHO WE RECRUITED TO OUR STUDY AND IMAGINE WHAT THAT PATIENT WOULD HAVE WANTED OR WOULD WANT SHOULD THAT SCENARIO COME TO PASS. THIS WAS DONE AT BASELINE AND THEN AGAIN THREE MONTHS LATER AFTER THE TEAM HAD -- AFTER THE PATIENT HAD COMPLETED A DECISION AID AND THE ADVANCED DIRECTIVE GENERATED BY OUR DECISION AID WAS SHARED WITH THE PATIENT. WE THEN LATER CAME BACK TO THE PATIENT AND ASKED THE PATIENT TO INDEPENDENTLY CONSIDER THESE SCENARIOS AND TO VOICE WHAT THEY ACTUALLY WOULD WANT FOR MEDICAL CARE IN THESE SCENARIOS. WHAT WE DID WAS COMPARED WHAT THE PATIENT SAID THEY WANTED WITH WHAT THE CLINICIAN TEAM THOUGHT THE PATIENT WANTED. AND WE FOUND THAT THE AGREEMENT BETWEEN WHAT THE PATIENT SAID THEY WANTED AND WHAT THE CLINICIAN WANTED AT BASELINE WAS 53% AND AFTER THE DECISION AID WAS IMPLEMENTED, ROSE TO 93%. SO, THE QUESTION BECAME, WHAT ABOUT FAMILY CAREGIVERS? WE WANTED TO KNOW PARTICULARLY NOT ONLY DID OUR INTERVENTION MAKE A DIFFERENCE BUT WHAT IS THE BEST PROCESS FOR CONDUCTING ADVANCED CARE PLANNING? SO WE DESIGNED A STUDY. IT WAS FUNDED BY NINR IN THE FINAL YEAR OF COMPLETION, COMPARING THIS EDUCATIONAL INTERACTIVE VIDEO-BASED ON LINE INTERVENTION WITH MORE BASIC ADVANCED CARE PLANNING BUT WE ALSO DIVIDED THE GROUPS TO LOOK AT WHAT HAPPENS WHEN PATIENTS DO THE ADVANCED CARE PLANNING INTERVENTION ALONE VERSE WHEN IS THEY SIT SIDE-BY-SIDE AT A COMPUTER AND THE GO THROUGH WITH THEIR LOVED ONE, THE PERSON THEY NAMED AS THEIR FAMILY CAREGIVER? OUR ASSUMPTIONS WAS THAT FAMILY CAREGIVERS PATIENTS WITH SEVERE ILLNESS ARE NOT PREPARED FOR THESE KINDS OF DECISIONS AND THAT THEY NEED TO MAKE THESE KINDS OF DECISIONS WITH SOME FREQUENCY. WE ALSO THOUGHT THAT THE AN INTERACTIVE ADVANCED CARE PLANNING TOOL WOULD INCREASE THEIR SENSE OF PREPAREDNESS AND WOULD IMPROVE THEIR KNOWLEDGE ABOUT THE PATIENT'S WISHES. AND PARTICULARLY, WE THOUGHT WHEN PATIENTS AND THEIR CAREGIVERS GO DO ADVANCED CARE PLANNING TOGETHER, YOU'RE GOING TO GET BETTER OUTCOMES. WHAT COULD BE MORE SENSIBLE THAN THAT? SO THIS IS A BUSY SLIDE. THIS IS OUR STUDY DESIGN. I WANT TO CALL ATTENTION TO A FEW THINGS AND I'LL COME BACK TO THIS A COUPLE OF TIMES. SO WE RECRUITED OR REFERRED OVER 2300 PATIENTS, AND IT'S HARD TO GET PEOPLE TO ENGAGE IN NON-THERAPEUTIC CLINICAL TRIALS. AND SO, OVER TWO,000 PEOPLE EITHER WERE NOT ELIGIBLE OR DECLINED AND WHAT WE RECRUITED WERE 285 PATIENT FAMILY CAREGIVER DIADS. WE DIVIDED THEM INTO GROUPS WHERE THE PATIENT WENT THROUGH THE DECISION-MAKING TOOL ALONE, ADVANCED CARE PLANNING PROCESS, OR THEY WENT THROUGH IT SIDE-BY-SIDE WITH THEIR FAMILY CAREGIVER. AND THEN WITHIN EACH OF THOSE GROUPS, WE SAID, EITHER THEY DO THE BASIC ADVANCED CARE PLANNING, EITHER ALONE OR TOGETHER, OR THEY DO OUR TOOL, ALONE OR TOGETHER. WE THEN BROUGHT THEM BACK IN ABOUT FOUR WEEKS LATER AND ADMINISTERED VARIOUS TOOLS AND INCLUDED THE KINDS OF VIGNETTES I MENTIONED IN THE ALS STUDY. AT THIS POINT, THE PATIENTS ARE DONE. WHAT WE DID WAS THEN FOLLOWED THESE FAMILY CAREGIVERS AND I'LL COME BACK TO THAT IN A MOMENT. AT THE SECOND VISIT, WHAT WE FOUND WAS THAT WE WERE MEASURING THEIR SENSE OF PREPAREDNESS AND WE ASKED THEM HOW CONFIDENT THEY WERE THAT THEY WOULD BE ABLE TO MAKE MEDICAL DECISIONS THAT ARE IN KEEPING WITH THEIR LOVED ONE'S VALUES AND KNOW WHAT TREATMENTS THEIR LOVED ONE WOULD WANT AND ACCURATELY REPRESENT THEIR VIEWS AND BE ABLE TO STAND UP AND SOMETIMES CHALLENGING SITUATIONS TO ADVOCATE FOR THEIR VIEWS. WE ALSO LOOKED AT THEIR CONCORDANCE. HOW WELL THE FAMILY CAREGIVERS UNDERSTOOD WHAT THE PATIENTS WANTED. AND THIS IS AN EXAMPLE SCENARIO. IMAGINE THAT THIS WAS ASKED OF THE PATIENT. IMAGINE YOU HAD A DESCRIBE COULD SURVIVE BUT YOU REQUIRED MECHANICAL VENTURE POLICE STATION HAD VARIOUS PHYSICAL AND MENTAL DEFICITS. WALK WITH A LIMP, COORDINATION PROBLEMS, MEMORY PROBLEMS, DIFFICULTY PAYING ATTENTION. WOULD YOU WANT TO BE ON A MECHANICAL VENTILATOR FOR UP TO A MONTH? WOULD YOU WANT A FEEDING TUBE IF YOU COULDN'T EAT BY MOUTHED? WOULD YOU WANT CARDIOPULMONARY RESUSCITATION IF YOUR HEART STOPPED? WOULD YOU WANT DIALYSIS AND A VARIETY OF THESE QUESTIONS. SO THE PATIENTS THAT SEPARATELY. AND THEN ALSO SEPARATELY, WE ASKED THE FAMILY CAREGIVER WHAT DO YOU THINK THE PATIENT WOULD WANT? SO WHAT WE FOUND WAS THAT REMEMBER OUR ASSUMPTION WAS PEOPLE ARE NOT WELL PREPARED AND 100 IS THE MOST PREPARED AND AT BASELINE, THEY REPORTED BEING VERY WELL PREPARED. SO THERE IS NOT A LOT OF ROOM TO GO UP HERE. BOTH INTERVENTIONS DID GO UP. YOU'LL NOTICE THAT THE BASIC ADVANCED CARE PLANNING WENT UP MORE THAN IN EDUCATIONAL INTERVENTION BUT MOST SURPRISINGLY TO US WAS THAT THERE WAS NO DIFFERENCE BETWEEN TOGETHER AND ALONE. THAT FAMILY CAREGIVERS WHO DID ADVANCED CARE PLANNING ALONGSIDE THEIR LOVED ONE, THE SICK PATIENT, THERE WAS NO IMPROVEMENT IF THERE WAS IS THAT FORCED COMMUNICATION. WHEN WE LOOKED AT CONCORDANCE, WE FOUND AS EXPECTED, THE EDUCATIONAL TOOL OUT PERFORMED BASIC ADVANCED CARE PLANNING BUT AGAIN, WE FOUND THAT THERE WAS NO DIFFERENCE BETWEEN PATIENTS WHOUENTS THROUGH IT TOGETHER WITH THEIR FAMILY CAREGIVER VERSUS THOSE WHO WENT THROUGH IT ALONE. AND WHEN WE PUT THESE DATA TOGETHER, WE FIND AN ODD FINDING WITH BASIC ADVANCED CARE PLANNING, THEY HAVE A LOWER UNDERSTANDING, OR KNOWLEDGE OF THEIR PATIENT'S WISHES, THE 23578LY CAREGIVER DOES, BUT MORE CONFIDENT. WHEREAS WITH THE EDUCATION AT INTERVENTION, THEY HAVE HIGHER ACKNOWLEDGMENT AND LESS CONFIDENCE. NO ONE POSSIBLE EXPLANATION COULD BE FOUND. IF YOU LOOK DEEP INTO THE LITERATURE AND DISCOVER WHAT WE FOUND HERE -- AND THIS IS NOT SURPRISING. MARK TWAIN AND LITTLER COMMENTED, EINSTEIN SAID THINGS SHOULD BE MADE AS SIMPLE AS POSSIBLE BUT NOT MORE SO. ONE OF THE THINGS IS THAT THE MORE YOU UNDERSTAND THE COMPLEXITY OF THINGS, SOMETIMES YOUR CONFIDENCE IN YOUR ABILITIES GO DOWN. THIS IS SAY BUSY SLIDE AND I WANT TO POINT A COUPLE OF THINGS OUT. THESE ARE THE VIGNETTES. AND MECHANICAL VENTILATION, FEEDING TUBE, CPR, DIALYSIS AND SO FORTH. AND THE GRAPH ON THE RIGHT SHOWS THE ODDS RATIO THAT IF YOU USE MAKING WISHES KNOWN, THEN PEOPLE WOULD ACTUALLY -- THERE WOULD BE GREATER CONCORDANCE BETWEEN FAMILY CAREGIVERS ASSUMPTIONS PATIENT WIDE AND THE PATIENT'S WISHES. AND EVERYTHING TO THE LEFT OF THAT OR THE RIGHT OF THAT LINE, DEMONSTRATES THAT AN EDUCATIONAL TOOL IS MORE EFFECTIVE. AND THAT IS PRETTY REASSURING FOR US BUT IT REALLY ONLY DEALS WITH HYPOTHETICAL VIGNETTES. ONE OF THE QUESTIONS IS, WHAT HAPPENS IN THE REAL WORLD? WHAT HAPPENS WITH REAL LIFE CONCORDANCE? THESE ARE OUR OTHER SURPRISES. AGAIN, GO BACK TO THE BUSY SLIDE. AT VISIT TWO, THE PATIENT WAS DONE. DONE WITH THIS INVOLVEMENT OF THE STUDY. WE CALLED UP THE FAMILY CAREGIVER EVERY 3-4 MONTHS AND SAID, SO, WHAT HAPPENED? HAVE YOU MADE ANY MEDICAL DECISIONS? WHAT WAS IT LIKE? AND IF THEY MADE A MEDICAL DECISION FOR THEIR LOVED ONE, OR THE PATIENT HAD DIED, WE BROUGHT THEM IN FOR A THIRD VISIT. AND IF YOU LOOK AT THE LITERATURE, THE LITERATURE WOULD SUGGEST AND BASED ON OUR STUDY DESIGN, THAT KIND OF PROCESS, THAT TRIGGERING IN THE THIRD -- STUDY VISIT, WOULD HAPPEN WITHIN 6-9 MONTHS. WHAT WE FOUND IS THAT WAS NOT SO. THAT IT WAS RIGHT NOW WE HAVE ON AVERAGE THREE YEARS BETWEEN VISIT TWO AND VISIT THREE. TWO-THREE YEARS AND WHEN VISIT THREE OCCURRED, TWO-THIRDS OF THE TIME, NO DECISION WAS EVER REPORTED. THE FAMILY MEMBER JUST OR THE PATIENT JUST DIED AND SO WE BROUGHT THEM IN. WHEN WE CALLED THEM UP, WHAT SURROGATES, FAMILY CAREGIVERS CONSIDERED TO BE A SURROGATE DECISION WAS DIFFERENT THAN WHAT WE THOUGHT. THEY WOULD SAY I CALLED 911 AND HE WAS ANTHIVELY OBJECTING ME TO DOING THAT. THAT WAS A SURROGATE DECISION. WE DON'T THINK OF THAT. BUT BY CONTRAST, WE HAD SOME WHO SAID, WHEN WE ASKED MORE QUESTIONS, THEY SAID, WELL, OH, YES, HE HAD A HEART TRANSPLANT. HOW DID THAT HAPPEN? THEY SAID WE WENT INTO THE HOSPITAL AND THE DOCTOR SAID HE NEEDED ONE SO I SAID OKAY. SO WASN'T THAT A DECISION? THEY SAID NO, THERE WAS NO CHOICE. NO REAL CHOICE. SO IT WASN'T A SURROGATE DECISION. AND WHAT CAME OUT IN THESE INTERVIEWS ON THE PHONE IS, AND SUBSEQUENTLY VISITS THAT WAS WHAT THEY WERE REALLY CONCERNED ABOUT IS THE MORAL DISTRESS APPEARED TO BE GREATER CONCERN THAN WHAT THEIR LOVED ONE WOULD WANT. SO OUR FINDINGS IN SUM ARE THAT FAMILY CAREGIVERS OF PATIENTS WITH SEVERE ILLNESS REPORT THAT THEY ARE VERY PREPARED FOR CERTAIN DECISION-MAKING BUT THAT THEY SELDOM NEED TO MAKE CERTAIN DECISIONS. AN ON LINE INTERACTIVE PROGRAM DID IN FACT IMPROVE THE KNOWLEDGE OF PATIENTS WISHES BUT IT DIDN'T MAKE ANY DIFFERENCE IN TERMS OF THEIR SENSE OF PREPAREDNESS. AND THAT SURPRISING TO US WAS HAVING PATIENTS AND FAMILY CAREGIVERS ENGAGE IN ADVANCED CARE PLANNING TOGETHER DID NOT IMPROVE OUTCOMES. AND ALSO ITS IDEA THAT WHAT COUNTS AS A SURROGATE DECISION IS PERHAPS OPEN TO TERMITATION. SO THE -- OPEN TO INTERPRETATION. I JUST TWO SLIDES LEFT. THE TOOLS AND RESOURCES THAT ARE EFFECTIVE FOR PATIENTS AND CLINICIANS MAY NOT WORK AS WELL FOR SPOKESPERSONS FOR FAMILY CAREGIVERS AND PATIENTS WITH SERIOUS ILLNESS. THAT IF WE ARE INTERESTED IN EVALUATING ADVANCED CARE PLANNING HELPS PREPARE FAMILY CAREGIVERS TO REPRESENT A PATIENT OR WHETHER DECREASES DECISIONAL DISTRESS, OR WHETHER IT PREPARES SOMEONE TO RESPECT A PATIENT'S WISHES, THESE ARE ALL PREDICATED ON BEING ABLE TO ACCURATELY IDENTIFY WHETHER SURROGATE HAS MADE A DECISION. SO THIS IS THE BASIC SCIENCE QUESTION THAT WE NEEDED TO ADDRESS. AND IN PART, BECAUSE WE FOUND THAT THEIR DISTRESS WAS MORE RELATED TO DISTRESS RATHER THAN NOT KNOWING WHAT A PATIENT WOULD WANT, WE REALLY NEED TO UNDERSTAND WHAT FAMILY CAREGIVERS NEEDS ARE IN TERMS OF ADVANCED CARE PLANNING. WHAT IS THE SCOPE OF THAT? AND IF THERE ARE THINGS THAT FALL OUTSIDE OF STANDARD ADVANCED CARE PLANNING, WHAT ARE THE OTHER FIELDS AND RESOURCES WE NEED TO PARTNER WITH TO MEET THOSE FAMILY CAREGIVER NEEDS AND HOW SHOULD WE MEASURE SUCCESS OF INTERVENTION? SO OUR STUDY WAS QUESTION WHETHER IT'S REPRESENTATIVE. WE BROUGHT IN OVER -- REFERRED 2300 PEOPLE TO RECRUIT 285. AND WE KNOW THAT MOST PEOPLE DON'T ACTUALLY DO ADVANCED CARE PLANNING. SO I THINK A QUESTION FOR THE FUTURE IS HOW DO WE GET MORE PEOPLE TO ENGAGE IN ADVANCED CARE PLANNING? AND HOW DO WE IN PARTICULAR GET THEM TO CHOOSE A SPOKESPERSON? BECAUSE MOST PEOPLE HAVEN'T DONE SO. SO WHAT WE NEED TO DO IS I THINK, TO DEVELOP EVIDENCE-BASED TOOLS THAT HELP FAMILY CAREGIVERS. WE NEED TO IDENTIFY THE NEEDS THAT CAN BE NET TERMS OF ADVANCED CARE PLANNING. WE NEED TO CLARIFY WHAT COUNTS AS A SURROGATE DECISION AND LAST DEVELOP ENGAGING WAYS TO INVOLVE PATIENTS AND FAMILY CAREGIVERS IN ADVANCED CARE PLANNING ACTIVITIES AND FINDING ENGAGING WAYS TO GET PATIENTS TO CHOOSE A SPOKESPERSON. SO THANK YOU VERY MUCH. [ APPLAUSE ] >> THANK YOU DR. LEVI. THAT'S AN EXCELLENT EXAMPLE OF GETTING INTO YOUR FINDINGS AND REALLY UNDERSTANDING WHAT IS THE REAL GEMS IN IT. NOT NECESSARILY HOW WE GO ABOUT IT BUT WHAT WE CAN LEARN FROM OUR RESEARCH. NEXT I'D LIKE TO INTRODUCE OUR FINAL PANELIST FOR THIS SESSION, DR. BETTY FERRELL. SHE IS THE DIRECTOR OF NURSING RESEARCH AND EDUCATION AND A PROFESSOR AT THE CITY OF HOPE MEDICAL CENTER AND ALSO THE BECK LANCANCER INSTITUTE. DR. FERRELL HAS BEEN IN NURSING FOR 40 YEARS. IT SEEMS JUST A FEW DAYS TO ME. FOCUS ORDER HER CLINICAL EXPERTISE IN RESEARCH AND PAIN MANAGEMENT, QUALITY OF LIFE AND PALLIATIVE CARE. SHE HAS A SUSTAINED PROGRAM OF RESEARCH FUNDED BY NINR AND NCI AMONG OTHERS AND SHE HAS BEEN A REAL MODEL FOR HOW TO DISSEMINATE EVIDENCE-BASED FINDINGS INTO CLINICAL AND EDUCATIONAL PROGRAMS FOR EXAMPLE, DR. FERRELL'S LEADERSHIP AND PI OF THE END OF LIFE NURSING EDUCATION CONSORT YUM OR ELNEC PROJECT AND THE DIRECTOR OF THE CAREGIVER CORE FOR THE PALLIATIVE CARE RESEARCH COOPERATIVE GROUP FUNDED BY NINR. AS YOU CAN IMAGINE, DR. FERRELL HAS A FLOOD OF AWARDS AND RECOGNITIONS INCLUDING ONE THAT IS AMONG THE 30 VISIONARIES IN THE FIELD BY THE AMERICAN ACADEMY OF HOSIS AND PALLIATIVE MEDICINE. AND I THOUGHT BEING CALLED A VISIONARY IS VERY APPROPRIATE FOR HER -- HOSPICE. DR. FERRELL. [ APPLAUSE ] >> DR. FERRELL: >> HELLO, EVERYONE. I'M HONORED TO BE HERE AND I WANTED TO SAY WHAT A GREAT DAY IT IS AFTER MY 40-YEAR CAREER TO FIND NIH HOSTING A CONFERENCE ON FAMILY CARE GIVING. SO CONGRATULATIONS TO ALL OF YOU WHO MADE THIS POSSIBLE. I'D LIKE TO SHARE THE KEY ELEMENTS OF MY RESEARCH IN FAMILY CAREGIVERRING WHICH HAS BEEN GOING ON FOR 33 YEARS AND I THINK THAT WE SEE SO MANY COMMONALTIES YESTERDAY AND TODAY REGARDLESS OF THE AGE OF OUR POPULATIONS OR DISEASE, THAT THERE IS SO MUCH THAT THE SYNTHESIS OF LITERATURE AND RESEARCH AND FAMILY CARE GIVING CAN TEACH US. SO WHAT I'D LIKE TO DO IS BRIEFLY SHARE WITH YOU A SYNTHESIS OF LITERATURE ABOUT FAMILY CAREGIVERS AND CARE OF CANCER PATIENCE AND DESCRIBE OUR MODEL OF SUPPORT FOR FAMILY CAREGIVERS, INCLUDING ASSESSMENT OF CAREGIVER NEEDS AND TEACHING BASED ON OUR MODEL OF FAMILY CAREGIVER QUALITY OF LIFE AND THEN TO END WITH ACKNOWLEDGING SOME RESOURCES THAT ARE AVAILABLE FOR ALL RESEARCHERS IN THE AREA OF FAMILY CARE GAVEING RESEARCH THROUGH THE COOPERATIVE. IN FEBRUARY OF THIS YEAR, JUST A FEW MONTHS AGO, WE PUBLISHED A SYSTEMATIC REVIEW OF LITERATURE FROM THIS LAST PERIOD OF 2010-2016 AND THIS WAS PUBLISHED IN THE JOURNAL CA CANCER JOURNAL. THERE YOU WERE 810 CITATIONS VE VIEWED FOR FAMILY CARE GIVING AND CANCER WHICH RESULTED IN 50RCTs. AND IT'S IMPORTANT TO ACKNOWLEDGE THESE 810 CITATIONS FAR EXCEEDED THE LASTS 26 YEARS IN THE ANALYSIS AND ALSO DOUBLE THE AMOUNT OF RCTs. SO THIS TELLS YOU THAT THEY ARE A FAMILY CARE GIVING ONCOLOGY IS REALLY INCREASING VERY SIGNIFICANTLY IN RECENT YEARS. THERE WERE 72 DIFFERENT INTERVENTIONS ACROSS THE 50RCTs AND THEY WERE PREDOMINANTLY EDUCATIONAL, SOME SKILLS TRAINING AND SOME THERAPEUTIC COUNSELING. BUT SOME IMPORTANT FINDINGS ONLY 11% OF THE INTERVENTIONS REQUIRED 3 HOURS OR LESS TIME SO WE ARE ALL REALLY BEING ASKED TO DEMONSTRATE EFFECTIVENESS OF INTERVENTIONS THAT HAVE PRACTICAL APPLICATION AND CLINICAL SETTINGS. 53% WERE COUPLES-BASED. MOST INVOLVED A COMBINATION OF IN-PERSON AND TELEPHONE CONTACT AND WERE OFTEN DELIVERED BY A NURSE OR PSYCHOSOCIAL PROVIDER. IN TERMS OF THE INTERVENTION CONTENT, YOU CAN SEE A LOT OF FOCUS ON CAREGIVERS INVOLVEMENT IN SYMPTOM MANAGEMENT, SELF CARE, 77% WERE SPOUSES. VERY PREDOMINANT CAUCASIAN POPULATION ACROSS THE STUDY AND MOST COMMON MEASURES WERE QUALITY OF LIFE, STRESS, COMMUNICATION AND INTIMACY AND CARE GIVING TASKS. SO, THERE IS A LOT OF WORK TO BE DONE BUT ALSO REALLY IMPORTANT TO SEE THE GROWTH OF THE FIELD IN THE LITERATURE. WHAT I'D LIKE TO DO IS SHARE THE RESULTS OF A 5-YEAR PROGRAM PROJECT FUNDED BY THE NATIONAL CANCER INSTITUTE. THE TITLE OF THE STUDY WAS PALLIATIVE CARE FOR QUALITY OF LIFE AND SYMPTOM CONCERNS IN LUNG CANCER. AND THE CITATIONS AT THE BOTTOM OF THE SCREEN ARE THE THREE KEY OUTCOME PAPERS FOR THIS STUDY. THE SECOND PAPER YOU SEE HERE IS THE PRIMARY OUTCOME PAPER FOR THE FAMILY CAREGIVERS PUBLISHED IN THE JOURNAL OF CANCER. SO IN THIS PROGRAM PROJECT FUNDED BY NCI, THERE WAS ONE PROJECT FOCUSED ON EARLY-STAGE CANCER PATIENTS, STAGES 1-3, ENTIRE PROJECT FOCUSED ON LATE-STAGE OR STAGE-4 LUNG CANCER BUT WE HAD THIS WONDERFUL OPPORTUNITY TO HAVE ONE ENTIRE PROJECT FOCUSED ON FAMILY CAREGIVERS SO THE AIMS OF THE PROJECT ARE LISTED HERE AND THEN YOU'LL SEE THE KEY OUTCOME VARIABLES HIGHLIGHTED IN RED SO WE ARE INTERESTED IN THINGS THAT -- SUCH A S CAREGIVER BUSHED EN, SKILLS PREPAREDNESS, PSYCHOLOGICAL STRESS, QUALITY OF LIFE. SELF CARE BEHAVIORS, RESOURCE USE AND ALSO IDENTIFYING WHICH BENEFIT OR GROUPS MIGHT BENEFIT MOST. SO WHAT IS THIS INTERVENTION? WE EVOLVED THIS INTERVENTION WHICH MEANS THAT THE TIME THE PATIENT IS THE NEW IN THE HEALTH CARE SYSTEM WHEN WE ARE FIRST SEEING THEM IN THE ONCOLOGY STUDY, WE BEGIN WITH THE ASSESSMENT OF THE PATIENT BUT WE ALSO DO A COMPREHENSIVE ASSESSMENT OF THE FAMILY CAREGIVER. HOW OFTEN IS IT WE ARE CARING FOR A PATIENT AND IT'S NOT UNTIL LATER WE REALIZE THE SPOUSE ALSO HAS CANCER OR DIABETES, ALZHEIMER'S, CARDIAC DISEASE, MULTITUDE OF DISEASES. AND SO, WE DO A THOROUGH ASSESSMENT OF BOTH PATIENT AND FAMILY CAREGIVER USING OUR QUALITY OF LIFE MODEL SO WE LEARN ABOUT PHYSICAL, PSYCHOLOGICAL AND SOCIAL AND SPIRITUAL ISSUES. THAT INITIAL ASSESSMENT IS FOLLOWED BY INTERDISCIPLINARY TEAM CONFERENCE TO PLAN BOTH PATIENT AND FAMILY CAREGIVER CARE AND THEN FOLLOWING THAT INPUT, THERE IS NURSE COORDINATION OF THE CARE BASED ON THE IDT INPUT, INCLUDING PATIENT AND SEPARATE FAMILY CAREGIVER EDUCATION WITH THE SUPPORT OF THE INTERDISCIPLINARY TEAM AND PHONE SUPPORT. OUR INTERDISCIPLINARY CONFERENCE IS HELD AFTER THE QUESTIONNAIRES ARE COMPLETED. ADVANCED PRACTICE NURSE WHO ASSESSED THE PATIENCE AND FAMILY, SHARE THE INFORMATION FROM THE STANDARDIZED TOOLS ABOUT THEIR QUALITY OF LIFE NEEDS. THE NEEDS ARE SUMMARIZED BY THE NURSE WITH THE OPPORTUNITY FOR EACH PROFESSIONAL TO MAKE RECOMMENDATIONS AND THEN WE CAN TAILOR THE INTERVENTION WITH THAT SPECIFIC PATIENT AND FAMILY MEMBER'S NEEDS. SO EVERY MONDAY MORNING AT 8:00, WE GATHER THE TEAM. THE NURSE THAT IS ASSESSED THE PATIENT TAKES THE RESEARCH QUESTIONNAIRES AND BASICALLY LOOKS THROUGH THE FACET, THE RESEARCH INSTRUMENTS AND WHAT HE OR SHE DOES IS SELECTED IN THE ITEM ON THESE INSTRUMENTS THAT THE PATIENT OR FAMILY CAREGIVER SCORED A MODERATE OR SEVERE SCORE AND TRANSPOSES THEM INTO THIS INTERDISCIPLINARY CARE PLAN. SO THEN WITH THE POWERPOINT PRESENTATION, WE CAN SIT AT THE TABLE AND IN 15 MINUTES, MAXIMUM WE DEVOTE EACH CARE PLANNING, WE CAN SEE USING THE EVIDENCE BASE MEASURES WHAT THE NEEDS ARE AND SO THE NURSE WILL REVIEW THE DATA AND IT RESULTS IN THIS CREATION OF CARE PLAN ACROSS THE PHYSICAL, PSYCHOLOGICAL, SOCIAL AND SPIRITUAL NEEDS. BUT WE ALSO THEN CAPTURE WHAT SHOULD WE KNOW ABOUT THE FAMILY CAREGIVER AND HOW DOES IT RELATE TO THE TREATMENT PLAN? WHAT IS PLANNED IN THE CARE FOR THE PATIENT? ALL OF OUR PROJECTS HAVE EXTENSIVE WRITTEN MATERIALS FOR PATIENTS AS WELL AS SEPARATE MATERIALS FROM FAMILY CAREGIVERS SO WHAT IS IT WE ARE DOING WITH FAMILY CAREGIVERS? THIS WILL BE A BRIEF SUMMARY BUT IN EACH AREA, WE INTRODUCED THE FAMILY CAREGIVERS SO WE WOULD SAY TODAY'S SESSION IS ON PHYSICAL WELL-BEING AND SO THE SESSION IS THEN DIVIDED INTO WHAT DOES THE CAREGIVER NEED TO KNOW TO TAKE CARE OF THE PATIENT? AND THEN HALF OF THE TIME IS DEVOTED AND WHAT DO YOU NEED TO KNOW TO TAKE CARE OF YOURSELF AS THE FAMILY CAREGIVER? THE PATIENT OR FAMILY DEPENDING ON THE TEACHING SESSION S GIVEN A LIST OF COMMON PROBLEMS BUT THEY SELECT THE TOP THREE CONCERNS. AGAIN, SO THAT WE CAN ALWAYS FOCUS ARE THEIR PRIORITY NEEDS. THE SESSION WENDS THE CREATION OF A SELF-CARE PLAN WHERE THEY DOCUMENT WHAT THEY PLAN TO DO TO BETTER CARE FOR THEMSELVES AS A CAREGIVER AND THEN THERE IS OTHER RESOURCES THAT CAN BE PROVIDED AS NEEDED. THE SECOND SESSION IS PSYCHOLOGICAL WELL-BEING AND AGAIN, HOW CAN YOU CARE FOR THE PATIENT'S ANXIETY AND DEPRESSION AND PSYCHOLOGICAL NEEDS AND HOW CAN YOU CARE FOR YOURSELF? WE REFINE THEIR SELF-CARE PLAN FROM THE PREVIOUS SESSION AND THEN CREATE SELF-CARE PLAN FOR THIS AREA OF PSYCHOLOGICAL WELL-BEING. THE THIRDS SESSION IS SOCIAL WELL-BEING AND SO, THIS HAS BEEN ONE OF GREAT INTEREST TO FAMILY CAREGIVERS. VERY INTERESTED IN SEXUALITY AND CHANGES IN RELATIONSHIP. AND THIS IS ALSO THE SESSION WHERE WE TALK ABOUT ADVANCED CARE PLANNING, THE FAMILY CAREGIVER AND THE FOURTH SPART SPIRITUAL WELL-BEING. SPIRITUALITY IS OFTEN NEGLECTED IN TERMS OF PATIENT AND FAMILY TEACHING AND WE HAD OVERWHELMING RESPONSE ACROSS OUR PROJECTS OF FAMILY CAREGIVERS VERY INTERESTED THAT WE WOULD GIVE ATTENTION TO THEIR OWN CARE GIVING, THEIR OWN WHAT IT IS LIKE TO LIVE WITH UNCERTAINTY, THEIR OWN INNER DISTRICTS HOW CAN WE CARE FOR THEIR OWN SPIRITUAL NEEDS. I'LL SUMMARIZE FOR YOU BRIEFLY. THIS IS FROM THIS PROGRAM PROJECT GRANT. WE HAD JUST UNDER 500 PATIENTS WHO PARTICIPATED IN THE STUDY AND 366 FAMILY CAREGIVERS. AND WE INCLUDED IN THE STUDY ALL STAGES AND SO AS YOU HEARD, ALSO I THINK FROM DR. LEWIS'S PRESENTATION, WE OFTEN THINK EARLY-STAGE PATIENTS PERHAPS HAVE FEWER NEEDS BUT THAT REALLY IS NOT THE CASE. AND SO ACROSS ALL STAGES OF DISEASE, PATIENTS AND FAMILIES REALLY NEED THE SUPPORT. THIS IS THE AVERAGE TEACHING SESSION IS THAT IS JUST ABOUT 30 MINUTES ABOUT 25 MINUTES FROM FAMILY CAREGIVERS. AND THIS IS THE SUMMARY OF THE MOST IMPORTANT TOPICS. AND SO, THE KEY ISSUE SHEAR THAT THERE IS DIFFERENCES BETWEEN EARLY AND LATE-PATIENTS AND ALSO THERE ARE DIFFERENCES BETWEEN WHAT CITIZEN PRIORITY OF THE PATIENT VERSUS THE FAMILY CAREGIVER. IN TERMS OF THE MAIN PATIENT OUTCOMES FROM THIS INTERVENTION, EVEN THOUGH WE ARE FOCUSING PRIMARILY ON THE FAMILY CAREGIVER TODAY, THE INTERVENTION IN THESE 491 PATIENTS DID RESULT IN IMPROVED QUALITY OF LIFE, SYMPTOM MANAGEMENT, SPIRITUAL WELL-BEING, AND PSYCHOLOGICAL DISTRESS. IN TERMS OF HEALTH CARE UTILIZATION, ALSO RESULTED IN PATIENTS GETTING REFERRED TO SUPPORTIVE CARE SERVICES AND ALSO UNSCHEDULED ENCOUNTERS HAVING ADVANCED DIRECTIVES COMPLETED AND IN TERMS OF FAMILY CAREGIVERS OUTCOMES, THE BENEFITS WERE IN THE AREA OF PSYCHOLOGICAL DISTRESS, SOCIAL WELL-BEING AND QUALITY OF LIFE. THOSE WERE KEY FINDINGS. SO PATIENT IMPROVED OUTCOMES FOR QUALITY OF LIFE SYMPTOMS IS STRESS AND SPIRITUAL WELL-BEING AND SOCIALITY AND SPIRITUAL WELL-BEING. OUR STUDY DEMONSTRATED A 6-MONTH SURVIVAL ADVANTAGE FOR PATIENTS RECEIVING THIS PALLIATIVE CARE INTERVENTION. THIS IS VERY CONSISTENT WITH WORK BY JENNIFER TEMEL AND ALSO MARIE WHO HAS ALSO DEMONSTRATED IN THERE IS A GROWING TREND IN THE LITERATURE OF PALLIATIVE CARE STUDIES DEMONSTRATING THAT NOT ONLY DOE WE HAVE QUALITY OF LIFE BUT PEOPLE LIVE LONGER. AND SIGNIFICANT IMPROVEMENT IN UTILIZATION AND QUALITY IMPROVEMENTS IN SUPPORTIVE CARE REFERRALS. IN TERMS OF WHERE WHY HAVE GONE FROM HERE, I WANTED TO MENTION A STUDY WE ARE BEGINNING THE FINAL YEAR AND THAT IS EVER DOING THIS PROGRAM PROJECT GRANT, WE BECAME AWARE THAT SME OF THE GREATEST NEEDS ARE IN FAMILY CAREGIVERS WHO ARE POOR, HAVE VERY FEW FINANCIAL RESOURCES. BECAUSE THEY SIMPLY HAVE NO OPTION. THEY'RE CAN'T HIRE HELP. THEY CAN'T TAKE TIME OFF. THEY HAVE SO FEW RESOURCES AND CHALLENGES. WE HAVE BEEN CONDUCTING AND REPLICATING THIS INTERVENTION IN A STUDY FOCUSED ON POOR AND UNDER SERVED FAMILY CAREGIVERS AND THIS STUDY WILL END IN 20INE. AND WE ALSO SEEN REALLY WONDERFUL BENEFITS. THE OTHER STUDY I WANTED TO MENTION IS FUNDED BY THE NINR AND THAT IS AS WE ALL KNOW ONCE WE TEST INTERVENTIONS, THE GOAL IS TO GET THEM OUT INTO THE COMMUNITY AND EVALUATE HOW CAN WE GET EVIDENCE? HOW CAN WE TRANSLATE INTO PRACTICE? SO THROUGH THIS RLO FUNDED BY NINR, I WORKED WITH MY COLLEAGUES IN THE KAISER-PERMANENTE SYSTEM WHERE WE ARE IMPLEMENTING THIS SAME INTERVENTION FOR PATIENTS AND FAMILIES WITH THREE LARGE KEISER HOSPITALS IS COMMUNITIES AND THAT STUDY WILL ALSO END NEXT YEAR. I WANTED TO JUST TAKE A LAST MINUTE OF MY PRESENTATION TO ALSO REMIND EVERYONE ABOUT THE RESOURCES OF THE PALLIATIVE CARE RESEARCH COOPERATIVE WHICH IS FUNDED BY NINR, THE PCRC FOUNDED IN JANUARY 2010 AND IT IS THE FIRST RESEARCH COOPERATIVE IN THE U.S. FOCUSED ON PALLIATIVE CARE AND END OF LIFE RESEARCH. THE INFRASTRUCTURE PROVIDES CENTRALIZED SUPPORT SERVICES AND IT IS BEING FUNDED THROUGH NINR. WHAT I WANTED TO BE SURE TO OF THE PCRC AND THERE ARE CORES WITHIN THE CRC AND SO THERE IS A SPECIFIC FAMILY CAREGIVER CORE WHICH WE LEAD AT THE CITY OF HOPE. SO THESE ARE THE KEY INVESTIGATORS OF THE PCRC AND IF YOU GO TO THE HOMEPAGE, SO IT'S JUST PALLIATIVE CARE RESEARCH.ORG, AND THEN YOU CAN CLICK ON CORES AND CENTERS AND THAT WILL TAKE YOU TO THE FAMILY CAREGIVER CORE WHERE WE COMPILED DIRECTORIES OF RESEARCH INSTRUMENTS USED IN FAMILY CAREGIVER RESEARCH, PROPOSALS, RESOURCES ON TOPICS SUCH AS SELECTING CONCEPTUAL MODEL OR DESIGNING RESEARCH FOR FAMILY CAREGIVERS. HOPEFULLY THIS WILL BE A BENEFIT. IN TERMS OF FUTURE DIRECTIONS, CERTAINLY THE SYSTEMATIC REVIEW AND OUR OWN WORK DEMONSTRATED THE IMPORTANCE OF INTERVENTION STUDIES FOR THE FUTURE. THAT I BELIEVE COLLUSION OF FAMILY CAREGIVERS IN PATIENT STUD CEASE A VERY IMPORTANT OPPORTUNITY. HEALTH SYSTEM AND RESOURCE OUTCOMES ARE VERY IMPORTANT FOR AND ALSO NEW STUDY POPULATIONS. THERE ARE SO MANY OPPORTUNITIES TO EXTEND THE WORK THAT HAS BEEN DONE IN A FEW SELECT GROUPS TO BE MUCH MORE BROAD. SO I THINK THERE IS GREAT OPPORTUNITY AND EXCITEMENT FOR THE WORK TO COME. AND CERTAINLY, THE FOCUS ON AGING. WE CERTAINLY SEE IS THIS IN OUR OWN STUDIES. ONE ADDITIONAL STUDY WE ARE CARRYING OUT NOW FUNDED BY THE NATIONAL CANCER INSTITUTE IS INTEGRATE PALLIATIVE CARE FOR ALL CANCER PATIENTS BEGINNING PHASE I CLINICAL TRIALS. AND THIS AGAIN IS SUCH AN IMPORTANT POPULATION THAT NEEDS SUPPORT AND EVEN IN THIS STUDY, PATIENTS GOING ON CLINICAL TRIALS, PHASE I CLINICAL TRIALS, I HAVE BEEN AMAZED AT THE OLDER PATIENTS AND OLDER FAMILY CAREGIVERS NAVIGATING THIS CARE. SO I THINK THE FOCUS ON AGING IS SOMETHING YOU HEARD THROUGHOUT THE CONFERENCE. SO THAT IS SAY QUICK SUMMARY OF MY WORK AND THANK YOU VERY MUCH. [ APPLAUSE ] >> THANK YOU DR. FERRELL. AND THANK YOU AGAIN TO THE ENTIRE PANEL FOR FRAMING THE DISCUSSION THAT WE ARE NOW GOING TO TURN TO. TO SUMMARIZE BRIEFLY, WHAT WE HAVE LEARNED FROM DR. LEWIS, I THINK THE FINDING OF DISTRESS, DEPRESSION AND WORRY IN EARLY-STAGE DISEASE FAMILY CAREGIVERS WE HAVE BEEN THEY ARE TOLD THAT THERE IS LIKELY TO BE THEIR FAMILY MEMBER'S DISEASE IS TOTALLY RECOVERABLE, THAT THERE IS A CASCADE OF WORRY AND CONCERNS THAT ROLES OUT TO THE ENTIRE FAMILY. THERE IS TENSION IN THE RELATIONSHIP EVEN IN THE MOST SOLID OF MARRIAGES. THAT THERE IS A SHATTERED ASSUMPTION OF THE LIFE THEY WOULD HAVE TOGETHER AND ABOUT HOW THE FUTURE LOOKS FOR THEM. AND THE DESIRE OF THE FAMILY CAREGIVER TO KNOW WHAT TO SAY AND HOW TO PROTECT THEIR FAMILY MEMBER. I THINK ALSO THERE ARE INTERESTING METHODOLOGIES THAT DR. LEWIS HAS BEEN A PIONEER TO USE WITH LONGITUDINAL DESIGNS AND WITH THE FACT THAT SHE ALWAYS EXAMINES THE MECHANISM AND PATHWAYS OF HOW THE EFFECT OF HAVING OR BEING A CAREGIVER HAS ON THE ENTIRE FAMILY. FROM DR. LEVI, WE HAVE THE VERY PROVOCATIVE FINDINGS IN LOOKING AT THE USE OF EVIDENCE-BASED ADVANCED CARE PLANNING TOOLS AND THE OUTCOMES THAT WHETHER IT WAS DONE WITH THE FAMILY CAREGIVER OR ALONE, DID NOT MAKE A DIFFERENCE IN THE OUTCOMES AND YET INVOLVING THE CAREGIVER WHO COMES IN CONFIDENT, WE FIND OUT THIS MAKES THINGS COMPLEX. SO THE COMPETENCE OF WHAT ONE NOW KNOWS THEY DIDN'T KNOW, HAS IMPACT IN THAT WAY. AND THEN I THINK WE SAW IN THE OTHER COMPONENT OF THE STUDY, THE FACT THAT AGAIN, WHAT WE AS HEALTH CARE PROVIDERS THINKS IS A DECISION LIKE SHOULD YOU HAVE A HEART TRANSPLANT OR NOT, HOW THE PROVIDER MAY HAVE SAID, HE NEEDS THIS AND THE REACTION WAS, OKAY. THAT WE MAY NOT ACTUALLY FRAME DECISIONS APPROPRIATELY FOR PATIENTS AND FAMILIES TO MAKE THOSE. THIS METHODOLOGY I THINK WAS ALSO VERY INTERESTING IN THAT IT WAS BOTH A LAB-BASED SIMULATION AND THEN APPLICATION INTO THE REAL WORLD. AND BOTH OF THEM RESULTED IN DIFFERENT FINDINGS. SO, LOOKING AT HOW WE APPROACH THOSE QUESTIONS WITH THE VERY SAME INTERVENTION, IDEA, I THINK HAD BOTH IMPORTANT INFORMATION WAS GAINED. AND FINALLY DR. FERRELL AND HER RESEARCH THAT HAD A VERY COMPREHENSIVE INTERVENTION THAT TRIED TO LOOK AT ALL THE DIMENSIONS OF QUALITY OF LIFE IN ORDER TO SUPPORT AND PREPARE THE CAREGIVER AND THE POSITIVE FINDING THAT RELATED TO IMPROVED QUALITY OF LIFE BUT THEN ALSO TO LOOK AT SURVIVAL ADVANTAGES IS VERY IMPORTANT COMPONENTS IN EVALUATING THE INTERVENTION. AND LOOKING AT METHODOLOGY. SHE USED A VERY INTERACTIVE STUDY GRANT MECHANISM CALLED PROGRAM PROJECT GRANT THAT ALLOWS ONE TO DO SEPARATE STUDIES AROUND THREE STUDIES THAT CAN BE INDEPENDENT BUT BECAUSE THEY ARE DONE TOGETHER, COMBINE RESULTS IN WAYS THAT OTHERWISE YOU WOULDN'T BE ABLE TO. SO AGAIN, A VERY NOVEL BUT I THINK IMPORTANT GRANT MECHANISM TO LOOK AT THE COMPLEXITY OF THE AREA OF CAREGIVER GIVING. SO NOW I'M GOING SIT DOWN AND WE ARE GOING TO OPEN TO QUESTIONS AND DISCUSSIONS FROM YOU. PLEASE COME TO THE MIC AND WE WILL TRY TO GET INTO A GOOD DISCUSSION. >> GOOD MORNING. I'M HEATHER FROM UC DAVIS SCHOOL OF NURSING. THANK YOU VERY MUCH FOR A WONDERFUL PANEL. DR. LEWIS, I APPRECIATE YOUR ELEGANT WORK OVER THE YEARS TO CONFIRM OR DISCONFIRM ASSUMPTIONS AND MODS ELSE BEHIND OUR WORK. AND AS I LOOK AT THE CARE GIVING WORK OVER THE LAST 30 YEARS OR SO, WE HAVE PREDOMINANTLY LOOKED AT DIE ADDS AND LOOKED IN MANY CAUCASIAN POPULATIONS AND I'M VERY CURIOUS TO HEAR FROM ALL OF YOU YOUR THOUGHTS ABOUT HOW WE ADVANCED THE FIELD TAKE INTO ACCOUNT MORE MULTICULTURAL PERSPECTIVES AND ALSO THE IDEA THAT IT'S OFTEN A NETWORK OF CAREGIVERS, PARTICULARLY IN CERTAIN CULTURAL GROUPS MORE THAN A DYADIC SPOUSESAL-TYPE APPROACH. I WORRY ABOUT THE ASSUMPTIONS UNDERLYING OUR MODELS THAT HAVE GUIDED OUR WORK FOR SO LONG. SO I'M CURIOUS TO HEAR YOUR THOUGHTS ABOUT THAT AND YOUR SUGGESTIONS AS WE GO FORWARD. >> I THINK THE ISSUES YOU RAISED ARE CRITICALLY IMPORTANT FIRST THE ISSUE OF RELATIONSHIP THAT AS OUR SYSTEMATIC REVIEW DOCUMENTED IN EACH OF US ALLUDED TO, TREMENDOUS AMOUNT OF RESEARCH IS FOCUSED ON THE DYAD AND THE SPOUSE. AND ACROSS ALL OF OUR STUDIES, ABOUT 30% ARE NOT SPOUSES. AND INTERESTINGLY, IN THIS STUDY, WE ARE NOW DOING FUNDED BY ACS ON LOW-INCOME FAMILIES, IT'S A MUCH HIGHER PROPORTION OF CHILDREN, GRANDCHILDREN, NEIGHBORS, FRIENDS, THAT ARE PRIMARY CAREGIVERS AND SO THERE IS A TREMENDOUS AMOUNT THAT WE DON'T KNOW ABOUT THE NON-SPOUSE CAREGIVER AND THEIR NEEDS AND SOME REALLY POWERFUL IMPLICATIONS OF CHILDREN, GRANDCHILDREN, DROPPING OUT OF COLLEGE AND REALLY COMPROMISING SIGNIFICANTLY SO THEY CAN TAKE ON THE CARE. I THINK THE CULTURAL ISSUE IS SOMETHING THAT IS VERY, VERY CLOSE TO OUR WORK BECAUSE WE HAVE A LARGE LATINO POPULATION AND ALSO A VERY DIVERSE COMMUNITY. AND EVERYTHING ABOUT FAMILY CARE GIVING IS SO SIGNIFICANTLY INFLUENCED BY CULTURE. WHAT DOES FAMILY MEAN? WHAT DOES IT MEAN TO BE A CAREGIVER? WHAT DOES ILLNESS MEAN? AND WE SAID OUT TO DO THIS STUDY ON LOW-INCOME BUT WHAT THAT ALSO CEMENT THAT WE HAVE OVER 50% ETHNIC DIVERSITY IN THAT STUDY. SO WE ARE LEARNING A LOT MORE ABOUT CULTURE. QUALITATIVE WORK TO BETTER UNDERSTAND THE CULTURAL ISSUES IN A STUDY WE ARE PLANNING NOW ON FAMILY CARE GIVING COMPLETELY IN THE LATINO POPULATION. WE TRIED TO REALLY BUILD IN MUCH STRONGER CULTURAL ASSESSMENT TO INTEGRATION IN EACH OF THESE FOUR MODULES. SO REALLY IMPORTANT WORK TO DO. >> THANK YOU. IT'S REALLY IMPORTANT POINT. IN OUR WORK WE TRIED TO INCLUDE DIVERSE POPULATIONS. I DIDN'T PROVIDE THAT DATA BUT FOR THE MOST RECENT STUDY THAT WE DID WITH THE DYADS, HAVE INVOLVED A SITE IN BOSTON SPECIFICALLY TO RECRUIT UNDER REPRESENTED MINORITIES. PART OF THE ISSUE THAT I THINK IS METHODOLOGICAL ONE FOR QUANTITATIVE ANALYSIS, YOU OFTEN NEED A SINGLE POINTED OF DATA. STUDY, WE SAID THAT THIS CAN BE A GROUP PROCESS BUT WE NEED ONE VOICE IN ORDER TO REPRESENT THAT GROUP. AND I THINK THAT FOR US, THE WAY THAT WE ARE EXPLORING THAT NON-DYADIC PROCESS, IS MORE WITH QUALITATIVE DATA AND THE NEXT SET OF STUDIES AND THE NEXT PORTION OF WHAT -- THE CURRENT STUDY LOOKS AT THE QUALITATIVE BECAUSE IT ALLOWS YOU TO GET MORE IN-DEPTH UNDERSTANDING OF PROCESS. AND OUR PUSH ALL ALONG WITH OUR TEAM IS THAT COMMUNICATION IS REALLY THE MOST IMPORTANT PART, THAT ADVANCED DIRECTIVE DOCUMENT IS JUST A PIECE OF PAPER. AND IT'S NOT PARTICULARLY VALUABLE IF IT DOESN'T SERVE AS A VEHICLE FOR DISCUSSION WITH THE BROADER GROUP OF RESPONSIBLE INDIVIDUALS. >> I WANT TO SALUTE BETTY THOMPSON IS WHO INTRODUCED ME TO TWO KEY PAPERS I JUST STUDIED WITH DR. BECKY WHO IS WORKING IN THE BORDER COMMUNITIES BECAUSE SEATTLE IS WHITE AND WE ARE ALWAYS THRILLED IF WE GET 15% OTHER THAN WHITES IN OUR STUDIES, EVEN THE HIGHEST PROPORTION IS 9% IN ONE COUNTY THAT MIGHT BE OTHER THAN WHITE. BUT THERE IS TWO PAPERS I RECOMMEND TO THE AUDIENCE THAT HAVE HELPED ME UNDERSTAND FORCEMENTAL WAYS TO THINK ABOUT CULTURAL WAYS -- FORMAL -- AND NOT INTERPRETING OR TRANSLATING BY A MAN NAMED CASTRO AND THEY ARE OFTEN AUTHORS CO-AUTHORED AND HE HAS ONE IN 2004, 2006 AND 2010. SO HE HAS EXAMINED SYSTEMATICALLY THE LITERATURE ON THIS PHRASE, CULTURAL ADAPTATION IN EVIDENCE-BASED INTERVENTIONS. EBIs. AND I SUBMITTED A GRANT THAT HE IS TRYING TO CULTURALLY ADAPT AND EVALUATE EFFICACY, NOT FROM A CAREGIVER TEAM PROJECT, BUT A PARENTING PROJECT SO I OFFER THAT. WE ARE ALL AT THE BEGINNING OF THE SCIENCE. IT'S NOT TRANSLATION OR INTERPRETATION. AND THAT GIVES FRAMEWORKS, ANYWAY. >> I'M ASHLEY SANFORD, A GRADUATE STUDENT AT PENN STATE AND FIRST I JUST WANT TO THANK YOU ALL FOR YOUR INTERESTING WORK AND YOUR PRESENTATIONS. THIS IS VERY EXCITING. I HAVE 2 QUESTIONS. FIRST MY QUESTION IS FOR DR. LEWIS. SO I THINK THAT IT IS REALLY EXCITING AND YOU THINK ABOUT THE MECHANISMS OF THE RELATIONSHIPS YOU'RE LOOKING AT. SO SPECIFICALLY YOU TALKED ABOUT MATERIAL COMMUNICATION BEING ONE OF THE MECHANISMS AND I'M WONDERING IF YOU ALSO THOUGHT ABOUT COMMUNICATION ABOUT THE ILLNESS AND KIND OF MAYBE MORE SPECIFICALLY WHAT THE MATERIAL COMMUNICATION MEASURE IS THAT YOU'RE LOOKING AT AND WHAT THAT IS FOCUSED ON. AND THEN I'LL JUST GO AHEAD AND ASK MY SECOND QUESTION FOR DR. LEVI. SO, I'M WONDERING IF YOU COME ACROSS THE SITUATION WHERE THE CAREGIVERS AND PATIENTS DON'T NECESSARILY MAYBE AGREE ON THE TYPE OF PLANNING THAT SHOULD BE HAPPENING OR WHAT THE PATIENT SHOULD GO THROUGH AND MAYBE THAT THAT KIND OF DISAGREE MIGHT BE A REASON WHY YOU'RE NOT SEEING MANY DIFFERENCES BETWEEN IF THEY WORK ON THE ADVANCED CARE PLANNING TOGETHER OR IF THEY WORK ON IT INDIVIDUALLY MAYBE IT'S BECAUSE THEY ARE UNCOVERING THAT FACT THAT THEY ARE NOT AGREEING? AND KIND OF WHAT THAT SITUATION HAS BEEN LIKE FOR YOU. >> FOR BETTER OR WORSE WE FIND WHEN THEY DON'T AGREE, THEY DON'T ENROLL. IT'S OFTEN THAT A FAMILY CAREGIVER REQUESTED US TO GO FORWARD WITH THE STUDY AND THE PATIENT SAID NO. OCCASIONALLY VICE VERSA. IN TERMS OF ONE OF THE THINGS WE HAVEN'T LOOKED NAT DEPTH IS THE ISSUE OF COMMUNICATION STYLE, THAT IS SOMETHING WE ARE EXPLORING WITH OUR QUALITATIVE DATA BUT IT'S A HUGE DISCONNECT BETWEEN SOMETIMES BETWEEN PATIENTS AND FAMILY CAREGIVERS AND HOW YOU BROKER THAT DISCUSSION MAKES A LOT OF DIFFERENCE. SO IS IF THERE ARE WAYS THAT INTERVENTIONS CAN ADAPT TO FIGURE OUT PERSONALITY TYPES OR COMMUNICATION STYLES, THAT I THINK CAN GO A LONG WAY AT BRIDGING THE DIFFERENCES. THAT IS NOT SOMETHING THAT WE ARE EXPERT ON BUT IN THE NEXT PHASE OF OUR RESEARCH, WE ARE LOOKING AT IN A SENSE THOSE PERSONALITY TYPES AND THAT IS SOMETHING THAT A COLLEAGUE OF MINE, LJ VAN SKY, DOING SOME REALLY FANTASTIC WORK VING GAMES FOR ENGAGING PEOPLE IN ADVANCED CARE PLANNING, SHE IS VERY PROLIFIC. SHE IS LOOKING AT THAT AS WELL. >> YOUR QUESTION IS ASTUTE BECAUSE WE ARE MEASURING MATERIAL COMMUNICATION AROUND CANCER COMMUNICATION THAT IS VERY SPECIFIC. SO WE DEVELOPED MUTALITY AND INTERPERSONALITY SENSITIVITY SCALE AND IT'S ALL ABOUT CANCER COMMUNICATION. SO IF WE GO BACK TO THE JCO PAPER IN 2008, THE MEASURE THAT WAS PROTECTED WAS A GENERIC MEASURE OF DYADIC ADJUSTMENT AND THAT'S THE SAME MEASURE WE HAVE BEEN USING IN THE PATH ANALYSIS MODELS BUT THAT WAS LIKE A BLACK BOX. WE NEEDED TO OPEN UP AND USE INTERPRETATIVE WORK TO DESIGN AND TEST A NEW MEASURE, HAPPY TO SHARE IT WITH YOU EXIT IS ALSO SIGNIFICANTLY PREDICTIVE -- IT'S A SIGNIFICANT INTERVENTION SENSITIVE MARKER OF CHANGES IN THE TYPE AND FORM THE COUPLE ALLOWS EACH OTHER TO HAVE THEIR DIFFERENT OR SIMILAR FRAMES OF REFERENCE ON THE CANCER. THEY ARE OPENLY ABLE TO TALK ABOUT IT IN TIMES WHEN BEFORE THEY WEREN'T ALLOWING EACH OTHER TO. SO MUTEDDALITY AND INTERPERSONAL SENSITIVITY MEASURE ABOUT CANCER COMMUNICATION. THANK YOU. >> THANK YOU VERY MUCH FOR YOUR PRESENTATIONS. I'M DENISE BROWN AND MY WEBSITE IS CARE GIVING.COM. MY FIRST QUESTION IS FOR DR. LEWIS. YOU TALKED ABOUT DIAGNOSIS DAY WHICH IS SAY DAY THAT EVERY FAMILY CAREGIVER REMEMBERS AND PRT OF WHAT THEY REMEMBER IS HOW UNHELPFUL AND UNSUPPORTIVE THE DOCTOR WAS WHETHER THEY DELIVERED THE NEWS. SO YOU MENTIONED IN YOUR TRAINING PROGRAM THAT THERE IS SCRIPTS AND I WONDERED IF THERE IS SAY SCRIPT FOR THE DOCTOR TO HELP THE DOCTOR BETTER DELIVER THE DIAGNOSIS? AND THEN MY SECOND QUESTION IS ABOUT THE TRAUMA OF CARE GIVING. EVERY FAMILY CAREGIVER HAS EXPERIENCED MULTITUDE OF TRAUMATIC EXPERIENCES. AND YOU DON'T HAVE TO WALK FURTHER THAN THE EMERGENCY ROOM TO SEE TRAUMATIC FAMILY CAREGIVERS. AND I WONDERED IF ANY OF YOU ARE AWARE OF ANY KIND OF RESEARCH AROUND INTERVENTIONS WITH EMERGENCY ROOMS OR JUST GENERALLY AROUND RESEARCH AND FAMILY CAREGIVERS AND PTSD. THANK YOU. >> I'LL COMMENT ON BREAKING BAD NEWS TOPIC AND THEN ALSO SORT OF TRAUMA ED. FIRST IN THE BREAKING BAD NEWS ISSUE, WHEN WE STARTED OUR ELNEC PROJECT 17 YEARS AGO, WE DID A REALLY EXHAUSTIVE REVIEW OF LITERATURE RELATED TO COMMUNICATION AND WE FOUND ABOUT 95% OF ALL LITERATURE IN COMMUNICATION AND PALLIATIVE CARE WAS ON ONE SINGLE TOPIC, BREAKING BAD NEWS. AND ABOUT 90% OF THAT WAS ONLY ABOUT THE PHYSICIAN COMMUNICATION. AND SO THAT HAS BEEN REALLY INFORMATIVE BECAUSE FIRST INVOLVED PHYSICIANS BREAK BAD NEWS BUT THEN THEY LEAVE. AND SOMETIMES THE WORSE THE NEWS THE QUICKER THEY LEAVE. SO WE THINK IT IS REALLY IMPORTANT THAT ALL MEMBERS OF THE TEAM ARE COACHED AND GIVEN SCRIPTS AND PRACTICE AND HOW TO BE WITH AND BE PRESENT AND LISTEN TO AND TALK WITH PATIENTS AND FAMILIES WHO RECEIVE BAD NEWS. AND THERE ARE MANY IMPORTANT CONVERSATIONS WE HAVE WITH PEOPLE BESIDES JUST BREAKING BAD NEWS BUT CERTAINLY HOW PEOPLE HEAR THAT INITIAL DIAGNOSIS OVER SHADOWS THE REST OF THEIR ILLNESS EXPERIENCE EVEN FOR DECADES. I DID A LOT OF WORK WITH WOMEN WITH OVARIAN CANCER AND TO THE DAY THEY DIED, THEY WOULD TALK ABOUT HOW THEY FIRST HEARD THIS NEWS. SO WE HAVE TO DO A BETTER JOB OF GIVING AND SUPPORTING PEOPLE WHO HAVE BAD NEWS. ON YOUR SECOND QUESTION ABOUT THE EMERGENCY ROOM, WHAT I WILL SAY IS THERE IS A GROWING BODY OF REALLY IMPORTANT WORK IN THE AREA OF PALLIATIVE CARE IN EMERGENCY ROOMS AND THAT IS OFTEN INCLUSIVE OF FAMILY CAREGIVERS. AND THE LEADING TEXT BOOKS IN THE FIELD OF PALLIATIVE CARE, THE OXFORD TEXTBOOKS AND JOURNALS, A GROWING BODY OF LITERATURE SO IF YOU'RE NOT IN THE PALLIATIVE CARE FIELD, I ENCOURAGE YOU TO LOOK IN THAT LITERATURE BECAUS THERE IS REALLY GOOD WORK HAPPENNG BY NURSES AND PHYSICIANS AND SOCIAL WORKERS AND OTHERS ON HOW WE CAN REALLY INTERVENE. SO, THE PERSON WHO HAD A STROKE IN THE NURSING HOME, THERE IS GOING TO BE THAT PANIC CALL BY THE NURSING HOME TO GET THE PATIENT TO THE ED BUT IF WE DON'T HAVE A PLAN OF PALLIATIVE CARE INTEGRATION ON ED, THE PATIENT WILL BE ON A VENTILATOR IN THE NEUROICU BEFORE WE KNOW IT, BEFORE WE CAN FIND THE DAUGHTER WHO LIVES THREE STATES AWAY. AND THE SAME IS TRUE FOR ONCOLOGY AND CARE GIVING AND HEART FAILURE. SO WE REALLY GO NEED WAY THAT IS PROVIDERS IN THE EMERGENCY DEPARTMENT CAN UNDERSTAND THE OPTIONS THAT HAVE TO BETTER CAUSE AT THAT POINT IN TIME, TO UNDERSTAND THE GOALS AND VALUES OF PATIENTS AND FAMILIES. >> OUR TIME IS GETTING SHORT SO ONE BRIEF QUESTION EACH. SO YOU'RE NEXT. >> JENNIFER EAST MAN FROM THE MARYLAND DEPARTMENT OF DISABILITIES. I HAVE A QUESTION FOR DR. LEVI AND I KNOW THIS WASN'T SOMETHING THAT WAS NECESSARILY LOOKED AT IN YOUR STUDY BUT I'M WONDERING WHAT THE IMPACT ON PATIENT RESPONSE -- WHAT THE IMPACT THAT CAREGIVER PRESENCE HAS ON PATIENT RESPONSES TO END-OF-LIFE CARE F IT CHANGES AS TO WHETHER THEY ARE WITH THE PERSON THAN WITHOUT. ARE. >> THAT'S NOT SOMETHING THAT WAS LOOKED AT. I GUESS THE ONE COMMENT I CAN MAKE IS THAT IT'S VERY CHALLENGING TO UNDERSTAND WHAT ACTUALLY HAPPENS IN THAT MOMENT OR IN THOSE MOMENTS. UNLESS A PATIENT IS GETTING THEIR CARE AT ONE FACILITY, THE DIFFUSION OF CARE AND THE DIFFICULTY OF FOLLOWING THAT CARE TO FIGURE OUT WHAT HAPPENED WAS CONSISTENT WITH WHAT THE PATIENT WANTED. WHAT WAS THE EXPERIENCE LIKE? I CAN SPEND A LOT OF TIME GIVING YOU OUR EXPERIENCE OF HOW CHALLENGING THAT IS. SO IT'S NOT SOMETHING I TOUCHED ON. I DON'T HAVE A LOT OF INFORMATION BUT FOR PEOPLE WHO ARE DOING RESEARCH LOOKING AT END OF LIFE OUTCOMES, PUTTING A LOT OF ATTENTION INTO FIGURING OUT HOW YOU ARE GOING TO REALISTICALLY OBSERVE AND GATHER DATA THAT ARE ACCURATE THAT IS REALLY A CHALLENGE. >> THANK YOU FOR PRESENTATION. MY QUESTION IS SIMPLE. I HAVE VERY DIFFICULT TIME TO RECRUITING CAREGIVER FOR RESEARCH AND MANY PATIENTS DO NOT IDENTIFY OR SAY -- I LIVE ALONE. DON'T HAVE ANY CAREGIVER. DO YOU HAVE ANY STRATEGY TO RECRUITING CAREGIVER FOR YOUR RESEARCH? >> I THINK IT IS REALLY HARD AND I THINK IT IS GETTING HARDER IN MANY WAYS BECAUSE AND PARTICULARLY AS WE TRY TO REACH OUT TO MORE DIVERSE COMMUNITIES IT BECOMES HARDER. FAMILY CAREGIVERS ARE SO OVERWHELMED BY ALL THE CIRCUMSTANCES OF THE CURRENT HEALTH CARE ENVIRONMENT. OLDER FAMILY CAREGIVERS HAVE SO MANY HEALTH PROBLEMS AND ISSUES OF THEIR OWN THAT THIS IS ONE MORE THING. AND THE MORE CULTURALLY DIVERSE THE STUDY THAT IS DEDICATED IN THAT AREA, WE FOUND OUR UNAVAILABLE. AND THEY ARE WORKING FULL-TIME AND TRYING TO SUPPORT THE FAMILY WHILE THEY ARE CARE GIVING AND NOT IN JOBS THEY COULD EVER TAKE A PHONE CALL IN THE DAYTIME, FOR EXAMPLE. SO I THINK AS RESEARCHERS WE HAVE TO AADAPT WHAT WE DO. WE ARE DOING MORE AND MORE TELEPHONE INTERVENTIONS TO ACCOMMODATE THEIR SCHEDULES. WE ARE DOING MORE AND MORE EVENING RESEARCH TO ACCOMMODATE THE BUSY CAREGIVER SCHEDULE AND I THINK WE ALL HAVE TO GO BACK AND REALLY LOOK AT THE BURDEN OF THE RESEARCH WE ARE DOING BECAUSE IN CARE GIVING AS YOU SEEN, WE IS ARE INTERESTED IN A LOT OF THINGS, SKILLS, PREPAREDNESS AND BURDEN AND QUALITY OF LIFE AND MOOD AND ALL KINDS OF VARIABLES, BUT IT REALLY DOES BECOME QUITE BURDENSOME. SO WE HAVE TO -- WE NEED TO BE MORE EFFICIENT IN OUR INTERVENTIONS, MORE EFFICIENT IN OUR OUTCOMES AND REALLY FLEXIBLE ABOUT THE WAYS WE INCLUDE FAMILY CAREGIVERS. >> I THINK THAT TRYING TO FIGURE OT IF WE CAN MEET A NEED THAT EXISTS THEY ALREADY HAVE IS IMPORTANT AND IN THAT REGARD, IT'S NOT EXACTLY MARKETING BUT IT IS MARKETING. BECAUSE YOU WANT TO TRY TO TOUCH PEOPLE IN A WAY THAT THEY SAY, IF I DO THAT, THAT'S SOMETHING THAT I ALREADY HAVE TO DO. AND IN OTHER STUDIES, I FOUND THAT TO BE PARTICULARLY EFFECTIVE. >> WE COULD GO ON BUT WE ARE IN FRONT OF YOUR LUNCH. SO AGAIN THANK YOU FOR ALL OF YOUR CONTRIBUTIONS TO THIS DISCUSSION AND AGAIN, THANK YOU TO OUR STELLAR PANEL. [ APPLAUSE ] >> THANK YOU. AND THANK YOU AGAIN DR. MOONY AND FOR ALL THE PANELISTS FOR VERY PROVOCATIVE PARADIGM SHIFTING AND ASSUMPTION-BREAKING RESEARCH. WE ARE NOW GOING TO TAKE A ONE-HOUR BREAK FOR LUNCH. WELCOME BACK, EVERYONE WHO IS ONLINE. I AM PLEASED TO INTRODUCE OUR MODERATOR FOR OUR FIFTH PANEL, THAT IS DR. RAIL NITKIN. DEPUTY DIRECTOR FOR THE NATIONAL CENTER FOR MEDICAL REHABILITATION RESEARCH LOCATED IN THE EUNICE KENNEDY SHRIVER NATIONAL INSTITUTE OF CHILD HEALTH AND HUMAN DEVELOPMENT. DR. NITKIN HELPED PROMOTE NIH RESEARCH INITIATIVES IN DIVERSE AREAS AS GENOMIC FACTORS THAT AFFECT REHABILITATION OUTCOMES. PROMOTION OF EXERCISE AND DIET IN CHILDREN WITH DISABILITIES, CLINICAL TRIAL DESIGN IN REHABILITATION, TECHNOLOGIES FOR HEALTHY INDEPENDENT LIVING AND RESEARCH WORK FORCE DIVERSITY. SO I WOULD LIKE TO INVITE DR. NITKIN, MODERATOR FOR PLENARY FIVE, CAREGIVING RESEARCH FOCUSED ON CHRONIC CONDITIONS, DEMENTIA AND ALTERATIONS IN COGNITION TO COME UP AS WELL AS ALL THE PANELISTS. THANK YOU. >> THANK YOU, DR. GITLIN. WELCOME TO THE PLENARY ON CAREGIVING RESEARCH TO US CANNED ON CHRONIC CONDITIONS FOCUSED ON CHRONIC CONDITIONS DEMENTIA AND ALTERATIONS IN COGNITION. I COME TO YOU FROM THE NATIONAL CENTER FOR MEDICAL REHABILITATION RESEARCH OBVIOUSLY PROVIDING NATURAL CONNECTIONS TO THIS WORKSHOP. WE'RE PLEASED TO HAVE A ROLE SPONSORING THIS. I THINK THE FACT NATIONAL SENT FOR RESEARCH RECOGNIZES A LOT OF MEDICINE AND SUPPORT HAPPENS IN THE HOME AND COMMUNITY. WE HAVE PARTICULAR INTEREST IN CAREGIVER -- IN THE NEEDS OF CAREGIVERS OPPORTUNITIES AND PRESENTATIONS THE LAST DAY AND A HALF TO IDENTIFY WHAT IS THE ACTIVE INGREDIENT SUPPORTING CAREGIVERS AND THE PATIENTS THAT WE'RE SUPPORTING. I ALSO WANT TO THANK ANY NURSING COLLEAGUE LOIS WHO HAS BEEN HELPING ME WITH THIS PANEL. SO THE FOCUS IS ON CAREGIVERS. ONE THING I SEE FROM THIS MEETING, TO REMIND YOU, PEOPLE ARE NOT CAREGIVERS BY CHOICE. OUT OF RESPONSIBILITY. THEY HAVE THE TAKE ON A SECOND CAREER EVERYONE IF LOOKING AHEAD TO OWN RETIREMENT. THE PEOPLE WHO ARE UNDERRESOURCED, UNTRAINED, UNAPPRECIATED AND IN ADDITION OUR HEALTHCARE SYSTEM IS FRONT LOADED FOR ACUTE CARE AND THEY TRY TO SUPPORT PEOPLE LONGER TERM IN MAINTENANCE PHASE IN THE HEALTH SYSTEM. A LOT OF THE SLIDES WE HAVE UP HERE SHOW SMILING FACES HEROIC PEOPLE, A LOT OF REAL STORIES ARE REALLY ISOLATED DEVOTION AND SURVIVAL. SO I'M HOPING THIS MEETING GIVES US A CHANCE TO DEFINE ESSENTIAL ROLE CAREGIVERS HAVE IN THIS PROCESS AND HELP EMPOWER THEM IN HAVING MORE VOICE IN THE WHOLE SUPPORT SYSTEM. SO OUR SESSION, THIS PARTICULAR SESSION FOCUSES ON GERIATRIC ISSUES, WE'RE SHIFTING TO MORE SPOUSE PEER CAREGIVING SUPPORT. WE HAVE THREE SPEAKERS, VERY BRIEFLY DEBRA MOSES WILL TALK ABOUT THE TOLL OF THIS ON CAREGIVERS THEMSELVES, PHYSICAL HEALTH CARDIO VASCULAR AND SO ON. JENNIFER WOLFF WILL TALK MODELS TO ENGAGE CAREGIVERS TO HELP UNDERSTAND THEIR NEEDS. AND PHILLIP STONE WILL TALK PARTICULAR ISSUES INVOLVED IN SUPPORT OF PATIENTS PATIENTS WITH DEMENTIA. I THINK ONE THING THAT IMPRESSED ME ABOUT ALL THREE PEOPLE THAT I HAVE THE HONOR OF SHARING, WHATEVER IT IS, THEY ALL HAVE TAKEN THE RESEARCH NOT ONLY TO UNDERSTAND ISSUES BUT TRANSLATE THEM INTO THINGS THAT REALLY SUPPORT THE CAREGIVERS AND SUPPORT THE PATIENTS SO THEY'RE REALLY TRYING TO TURN RESEARCH THEY'RE DOING INTO BETTER SUPPORT SHOWING THE NEEDS DEVELOPING PROGRAMS TO MAKE A DIFFERENCE. AS WE GO THROUGH THIS, THINK ABOUT THE DIFFERENCES IN THE IMPAIRMENT AND TREATMENTS THAT THE CAREGIVERS TRY TO SUPPORT. THE EXPECTATIONS OF PATIENTS, GOALS IN LIFE, DIFFERENCES IN ENVIRONMENTAL FACTORS THEY WORK IN AND ESPECIALLY DIFFERENCES IN RESOURCES. WE'RE GOING TO TALK ABOUT STRESSES, WORLD -- RURAL VERSUS URBAN ENVIRONMENT AND SO ON. SO THINK ABOUT THESE ISSUES AND LET ME GO AHEAD AND INTRODUCE FIRST SPEAKER, DEBRA MOSER. DR. MOSER IS PROFESSOR UNIVERSITY OF KENTUCKY, HER RESEARCH CONCENTRATE ON PREVENTING CARDIOVASCULAR DISEASE IN POPULATIONS WITH HEALTH DISPARITIES. SUCH AS CAREGIVERS OF WITH DISEASES RURAL INDIVIDUALS AND PRISONERS. CO-DIRECTOR FOR RESEARCH INTERVENTIONS FOR CARDIOVASCULAR HEALTH HEART PROGRAM. AND DR. MOSER IS STUDYING WAYS TO IMPROVE OUTCOMES IN QUALITY OF LIFE IN PEOPLE WITH HEART FAILURE. AND OTHER CARDIAC CONDITIONS. DR. MOSER DIRECTS THE CENTER FOR BIOBEHAVIORAL RESEARCH IN SELF-MANAGEMENT, CARDIO PULMONARY DISEASE AT THE UNIVERSITY OF KENTUCKY COLLEGE OF NURSING. DR. MOSER, PLEASE START US OFF. THANK YOU. >> REALLY SPECIAL THANKS TO NINR AGAIN, THANKS TO EVERYBODY ELSE FOR THIS WONDERFUL VISION IN CREATING THIS FORUM. I WOULD LIKE TO ACKNOWLEDGE SPUE POTENTIAL CONFLICTS IN SOME ACT KNOW LEMMENTS. THE COMMUNITY MEMBERS IN APPALACHIA TO GIVE EVERYTHING TO PARTICIPATE AND ALSO SINCE THEIR COMMUNITY BASED INTERVENTIONS GUIDE US IN DEVELOPING THE BEST INTERVENTIONS AND CENTER FOR EXCELLENCE RURAL HEALTH AND HAZARD AND THE FABULOUS FUNDING I RECEIVE TO DO THIS VERGE. RESEARCH. I WANT TO TALK DIFFERENT FROM OTHER SPEAKERS ABOUT THE IMPACT OF CAREGIVING ON PHYSICAL HEALTH. WE HEARD ABOUT IMPACT ON PSYCHOLOGICAL HEALTH, SOCIAL HEALTH BUT NOT SO MUCH ON PHYSICAL HEALTH. ONLY RECENTLY HAVE PEOPLE COME TO REALIZE THE DANGEROUS IMPACT ON THE CARDIOVASCULAR HEALTH OF CAREGIVERS THAT CAREGIVING EXERTS. EVEN THOUGH THERE HAS BEEN RESEARCH FOR A WHILE LEADING US TO THE KNOWLEDGE TODAY THERE ARE A LARGE DISPARITY IN CARDIOVASCULAR DISEASE IN CAREGIVERS COMPARED TO NON-CAREGIVERS, IT'S AN AREA OF BIG DISPARITIES. ONE STUDY TO DEMONSTRATE THIS IS CALLED THE CAREGIVER EFFECT STUDIES. STUDIES. THERE WERE 392 CAREGIVERS ENROLLED AND 427 NON-DARE GIVES WHICH IS A NICE CONTROL THEY DEVELOPED AND THEY WERE SPOUSAL CAREGIVERS AND THEY WERE FOLLOWED FOUR YEARS WHICH IS AN EXCELLENT WAY TO FOLLOW THESE OUTCOMES. SPOUSAL CAREGIVERS WHO HAD CAREGIVING STRAIN HAD MUCH HIGHER, 63% HIGHER MORTALITY THAN NON-CAREGIVERS. THAT WAS CONTROLLED FOR DEMOGRAPHIC FACTORS AND OTHER COMORBIDITIES THAT HAVE IMPACT ON THIS OUTCOME. INTERESTINGLY SPOUSAL CAREGIVERS WHO ARE PROVIDING CARE BUT WEREN'T STRESSED WERE SIMILAR IN MORE IT WILLTY SO WE SEE -- MORTALITY SO WE SEE MECHANISMS WHEREBY WE CAN SEE IMPACT ON CAREGIVING ON PHYSICAL HEALTH. A LATER STUDY, CAREGIVING AND CORONARY HEART DISEASE STUDY, WHICH MORE SPECIFICALLY TARGETED MORBIDITY FROM CARDIAC DISEASE WAS A PROSPECTIVE STUDY CONDUCTED WITHIN THE NURSES HEALTH STUDY WHICH I'M SURE MANY OF YOU PARTICIPATE IN. AND INCLUDES MORE THAN 54,000 NURSES, AGE 46-7 # WHO DID NOT -- 71 WHO DIDN'T HAVE CORONARY HEART DISEASE WHEN STARTED IN THIS SUBSTUDY. THEY WERE FOLLOWED FOR FOUR YEARS. CAREGIVERS WITH A HIGH LEVEL OF CAREGIVING RESPONSIBILITY, THAT WAS GREATER THAN NINE HOURS PER WEEK HAT 82% INCREASE RISK OF CHD COMPARED WITH NON-CAREGIVERS. THIS EXTENDED THE PREVIOUS ONE, BY CONTROLLING FOR NOT ONLY SOCIO DEMOGRAPHICS AND COMORBIDITIES BUT LIFESTYLE BEHAVIORS WHICH ARE REALLY IMPORTANT EXPLAINING CVD. BUT CONTROLLING FOR ALL WE SEE MARKED INCREASE IN DEVELOPMENT OF CORONARY HEART DISEASE IN CAREGIVERS VERSUS NON-CAREGIVERS. IN THE FINAL STUDY I WANT TO POINT OUT THAT WASN'T OUR OWN, IT WAS CALLED CAREGIVING AND ONSET OF CARDIOVASCULAR DISEASE, THIS WAS CONDUCTED WITHIN THE CONTEXT OF THE HEALTH RETIREMENT STUDY. SO THIS STUDY AS THE OTHER ONE HAS LOTS OF PATIENTS, WE HAVE THE POWER TO SEE DIFFERENCES AND THEY PROVIDE SOME POWERFUL EVIDENCE BECAUSE THERE'S ALSO COLLECTED WHICH CAN BE CONTROLLED IN THE ANALYSIS. THESE WERE ADULTS OVER AGE 50 AND SPOUSES FOLLOWED FOR EIGHT YEARS WHICH IS A NICE TIME BECAUSE IT TAKES A WHILE TO DEVELOP CHD. AND THESE STUDIES THAT ARE LONGER ARE IMPORTANT TO REALLY DECIDING THE IMPACT OF CAREGIVING ON CWD RISK. SPOUSAL CAREGIVERS WHO HAD HIGH CAREGIVER DEMANDS WERE 35% MORE LIKELY TO BE DIAGNOSED WITH STROKE OR HEART DISEASE THAN NON-CAREGIVERS. AND SPOUSAL CAREGIVERS WHO PROVIDED CARE FOR MORE THAN TWO YEARS HAD 95% HIGHER RISK. INTERESTINGLY YOU SEE COMPOUNDING OF DEPRESSION WE HEARD COMMON IN CAREGIVERS IN THIS NEXT POINT WHERE DEPRESSED SPOUSAL CAREGIVERS HAT 2.7 TIMES HIGHER CBD THAN NON-DEPRESSED CAREGIVERS SO MOST HAVE COME TO REALIZE DEPRESSION IS A SIGNIFICANT PREDICTOR FOR THE DEVELOPMENT OF ONSET OF CBD YET OFTEN STILL NOT LISTED AS ONE OF THE IMPORTANT RISK FACTOR AND OFTEN NOT ADDRESSED IN INTERVENTIONS AND THAT'S ONE OF THE THINGS WE TRY TO DO IN OUR INTERVENTIONS. LET ME POINT OUT THESE STRENGTH OF THESE DATA IN THE UNADJUSTED DATA, THE RISK IS ABOUT 1.9 TIMES. YOU CAN SEE THAT IT DECREASES A BIT BUT NOT SUBSTANTIALLY WITH THE ADDITION OF ALL OF THESE CO-VARIANT THAT WERE CONTROLLED SO WE STILL SEE A SIGNIFICANT INCREASE IN RISK EVEN WHEN STRONG PREDICTORS FOR THE DEVELOPMENT OF CBD ARE CONTROLLED. I WANT TO TALK ONE SLIDE ABOUT URBAN RURAL HEALTH DISPARITIES BECAUSE THAT'S THE CONTEXT WHICH WE CONDUCT STUDIES SO WE WORK IN APPALACHIA. I FORGET TO MENTION AT THE BEGINNING MY RESEARCH PARTNER, WHO IS INSTRUMENTAL IN ALL THE RESEARCH WE DO TOGETHER. SO IT'S A RURAL AREA AND THE MOST SINGLE MOST SOCIO ECONOMICALLY DISTRESSED AREA IN THE COUNTRY. IN APPALACHIA WE HAVE COUNTY THAT HAS THE WORST LIFE EXPECTANCY IN THE WHOLE UNITED STATES AND MANY PARTS OF THE WORLD. WE HAVE THE POOREST COUNTY IN THE ENTIRE UNITED STATES APPALACHIA, KENTUCKY. WE HAVE THE THE COUNTY WITH THE MOST CARDIOVASCULAR DISEASE RISK SO THE APPALACHIAN AREA IS VERY PERSISTENTLY SOCIO ECONOMICALLY DISTRESSED AND IS THE SITE OF HUGE HEALTH DISPARITIES. SO PUT THAT ON TOP OF PROBLEMS ASSOCIATED WITH CAREGIVING AND WE COMPOUNDED THE PROBLEMS OF CAREGIVING IN THIS AREA. SO WE SHOULD KNOW AS BACK GROWN URBAN RURAL HEALTH DISPARITIES INCREASED OVER TIME INSTEAD OF GETTING BETTER. THE LIFE EXPECTANCY GAP HAS INCREASED, IT'S WELL KNOWN PEOPLE IN RURAL AREAS HAVE POORER HEALTH, MORE PSYCHOLOGICAL DISTRESS AND INTERESTINGLY ENOUGH KENTUCKY AND SPECIFICALLY APPALACHIA. AS THE WORST EMOTIONAL HEALTH OF ANY AREA IN THE UNITED STATES. AND THEY HAVE LESS PHYSICAL ACTIVITY COMPARED TO URBAN COUNTERPARTS AND THESE RURAL URBAN DISPARITIES ARE RELATED TO THE SOCIO ECONOMIC DISTRESS AND DEPRIVATION THAT I TALKED ABOUT. AND THERE ARE A NUMBER OF ENVIRONMENTAL BARRIERS TO HEALTH AND UNEQUAL DISTRIBUTION OF HEALTH SERVICES. MANY PEOPLE DON'T EVER SEE A DOCTOR AND ONE OF THE AREAS WE HAVE STUDIED WE LOOKED AT PEOPLE WHO CAME TO US FOR CARDIOVASCULAR SCREENING AND THEIR PAST HERRY, 6% HAD NEVER, EVER SEEN A DOCTOR. THESE WERE ADULTS, OF ANY KIND. MORE THAN 60% DIDN'T HAVE A PRIMARY CARE PROVIDER. THE REMAINDER HAD ONE BUT DIDN'T SEE THEM VERY OFTEN AND IT HAS A LOT TO DO WITH POVERTY, BUT ALSO THE ACCESS AND THE DIFFICULTY IN ACCESS TO CARE AND THEN WHAT HAPPENS TO EPIPOOL WHEN THEY TRY TO GET CARE, THEY OFTEN FEEL DISMISSED IN THEIR PROBLEMS OR NOT UNDERSTOOD CULTURALLY. SO NOT JUST PEER ENVIRONMENT WE HAVE DONE A LOT OF WORK STUDYING CARDIO VASCULAR HEALTH AND STATUS IN IN THIS AREA AND ONE STUDY WE DID FROM INTERVENTION STUDY THAT WE DID, OF 640 INDIVIDUALS, THE PERCENTAGE WHO WERE CAREGIVERS IN THAT SAMPLE, WE DIDN'T RECRUIT TO FIND CAREGIVERS, WE DECIDED TO LET THEM COME AS THEY WOULD. 13% WERE CAREGIVERS AND WE COMPARED THAT TO NON-CAREGIVERS WITH AN ILL FAMILY MEMBER WHICH WE THOUGHT WAS A NICE WAY TO CONTROL FOR JUST THE PRESENCE OF WHETHER YOU -- IF YOU HAVE AN ILL FAMILY MEMBER, THAT'S WHAT CAUSES THE ISSUE OR IS IT ACTUALLY THE CAREGIVING AND MOST WERE NON-CAREGIVERS. YOU CAN SEE THE PERCENTAGE OF FEMALES AND THAT'S WHAT WE ALMOST ALL SEE I GUESS EXCEPT IN BREAST CANCER AREA. THAT WE HAVE FEMALE CAREGIVERS MOST COMMON. THEIR AVERAGE AGE IN THIS STUDY WAS 50. JUST WANT TO POINT OUT NOW COMPARISONS THAT WE DID AMONG THESE THREE GROUPS. NON-FAMILY CAREGIVERS FAMILIES WITH ILLNESS AND CAREGIVERS. ON THESE SLIDES AND THERE WERE SEVERAL REPEATS WHERE CAREGIVERS ARE YELLOW, FAMILIES WITH ILLNESS ARE BLUE. NON-CAREGIVERS ARE THE SCREEN. THIS IS DE-- GREEN. THIS IS DEPRESSION. WHAT I ALLUDED TO PROOFIOUSLY IS REALLY IMPORTANT OFTEN IGNORED RISK FACTOR FOR CVD. THE HIGHEST LEVELS WERE PRESENT IN CAREGIVERS COMPARED TO FAMILIES WITH ILLNESS AND NON-CAREGIVERS. 29% OF THAT SAMPLE. THE PERCENTAGE IN THE GENERAL POPULATION IS ACTUALLY ONLY ABOUT 3 TO 5% SO YOU CAN SEE IN THE NON-CAREGIVER THERE'S HIGH DEPRESSION REFLECTING THE PROBLEMS IN APPALACHIA. WITH REGARD TO OBESITY, KENTUCKY APPALACHIA, KENTUCKY, HAS THE FATTEST COUNTY IN THE ENTIRE UNITED STATES. THE PEOPLE THERE KNOW THAT. AND THEY TRY TO DO REALLY ARE INTERESTED IN CARDIOVASCULAR RISK REDUCTION EFFORTS. YOU CAN SEE THAT THIS PROBLEM IS HIGHEST IN CAREGIVERS COMPARED TO FAMILIES WITH AN ILLNESS AND NON-CAREGIVERS WHICH ARE SIMILAR TO EACH OTHER. WITH REGARD TO HIGH TRIGLYCERIDES, ONE LIPID WE FOLLOW WE DO ALL LIPIDS. THE HIGHEST LEVELS SEEN IN CAREGIVERS COMPARED TO FAMILY WITH ILLNESS AND NON-CAREGIVERS. I HAVE JUST SELECTED A FEW OF THE CARDIOVASCULAR RISK FACTORS IN THE INTEREST OF TIME. HYPERTENSION RATES ARE HIGHEST IN CAREGIVERS. YOU CAN SEE IN THE YELLOW, 58.3% COMPARED TO FAMILIES WITH AN ILLNESS AND NON-CAREGIVERS. I WANT TO SHOW ONE LAST SLIDE, REPRESENTATIVE OF ALL CHANGES THAT WE SEE IN THIS STUDIES THAT WE HAVE CONDUCTED. THIS WAS AS I SAID CONDUCTEDDED IN THE CONTEXT OF AN INTERVENTION TRIAL. I WANT TO SHOW THE IMPACT OF INTERVENTION IN CAREGIVERS NON-CAREGIVERS AN CAREGIVERS WITHOUT AN ILL FAMILY MEMBER. SO DECREASE OR SCORE GOING DOWN, THE GREATER THE DECREASE, THE OBVIOUSLY THE GREATER THE DECREASE IN DEPRESSION. THERE ARE SIGNIFICANT DIFFERENCES AMONG ALL THESE THREE GROUPS. THE GREATEST IMPACT OR DECREASE IN DEPRESSION SEEN IN CAREGIVERS COMPARED TO NON-CAREGIVERS WITH ILL FAMILY MEMBER AND NON-CAREGIVERS WITHOUT AN ILL FAMILY MEMBER. THIS DEMONSTRATES AN IMPORTANT POINT, OFTEN PEOPLE SAY THEY'RE SO DEPRESSED, SO OUT OF SHAPE, SO OVERWEIGHT, THEY'RE BAD HYPERTENSION, THIS REALLY IS NEVER GOING TO WORK AND THEIR CAREGIVERS ON TOP OF THAT, HOW CAN THEY ATTEND TO ANY LIFESTYLE CHANGE. THIS SLIDE DEMONSTRATES THE GREATEST BENEFIT SEEN IN THOSE WITH THE WORST DEPRESSION. PARTLY IT'S AN ISSUE OF THE WAY WE DESIGN INTERVENTION TO ADDRESS INTERVENTION OR DEPRESSION BUT ALSO AS PART OF RELATED TO THE NEED THAT PEOPLE HAVE, CAREGIVERS HAVE IN THESE AREAS. WHERE THEY -- I'LL GIVE SOME INFORMATION FROM OUR OTHER STUDIES ABOUT THAT IN A BIT, REALLY FEEL IGNORED BY, WE HAVE HEARD THIS BEFORE TOO, HEALTHCARE PROVIDERS, FAMILY MEMBERS, REALLY LIVING IN ISOLATION. THERE ARE HIDDEN CARE PROVIDERS BUT ALSO THE HIDDEN OR SILENT PATIENT IN MANY CASES. LET ME TALK ABOUT SOME RAISING BACK LITERATURE AND GIVE YOU GAPS AND THEN I WILL TALK MORE ABOUT MORE OF OUR RESEARCH. RURAL CAREGIVERS OF PATIENTS WITH CHRONIC CONDITIONS, THESE ARE A VARIETY OF CHRONIC CONDITIONS. SO PEOPLE TO BE IN THAT PRIOR STUDY, COULD BE ANY CONDITION. THEY INCLUDE CONDITIONS LARGELY CARDIAC DISEASE SOMEHOW BECAUSE WE'RE INTERESTED IN CARDIAC DISEASE, WE END UP WITH CAREGIVERS OF PATIENTS WITH CARDIAC DISEASE. AND HEART FAILURE IS A LONG INTEREST OF MINE, SO WE HAVE HEART FAILURE PATIENTS AND ALSO ALZHEIMER'S AND OTHER DEMENTIAS. PEOPLE WITH OTHER PARKINSON ECESES, OTHER NEURO-- DISEASES, NEUROMUSCULAR DISEASES AND SO WITH WIDE VARIETY OF CHRONIC CONDITIONS. WE KNOW THERE ARE EDUCATIONAL CONDITIONS TO IMPROVE CAREGIVER COMPETENCY, THIS IS PSYCHOEDUCATIONAL SUPPORT PROGRAMS TO REDUCE BURDEN AND DISTRESS. THERE AREN'T INTERVENTION PROGRAMS DEDICATED TO IMPROVING CARDIOVASCULAR HEALTH AND SELF-MANAGEMENT SKILLS AND REDUCING DEPRESSIVE SYMPTOMS FOR CAREGIVERS. SO WE WERE FUNDED DELIGHTFULLY BY NINR TO TESTING INTERVENTION, RURAL CAREGIVERS HEART HEALTH, RICSCHH, THAT'S A RIF ON OUR NAME AS RESEARCH GROUP. THIS IS A STUDY OF A TESTED INTERVENTION, HEART HEALTH INTERVENTION REFINED WITH COMMUNITY BASED PARTICIPATORY METHODS CONDUCTED A COUPLE OF TIMES TO FURTHER REFINE, MAKE IT CULTURALLY APPROPRIATE, IT IS BASED ON DELIVERING THE SKILLS AND THE KNOWLEDGE TO DO GOOD SELF CARE. SO WE ARE INTERESTED IN DETERMINING THE EFFECTS OF THE RICH INTERVENTION ON PRIMARY OUTCOMES OF CVD RISK FACTORS LANDS AND BODY MASS INDEX AND BLOOD PRESSURE AT 12 AND 24 MONTHS, IMPACT OF SELF-MANAGEMENT BEHAVIORS, DEPRESS RECEIVE SYMPTOMS AND WHETHER THESE OUTCOMES DIFFER BY GENDER. TO DO THAT WE HAVE STRATEGIZED -- STRATIFIED WE STRATEGIZE TOO BUT BY MALE AND FEMALE TO USUAL CARE OR INTERVENTION GROUPS AND SHORT TERM FOLLOW-UP AT FOUR MONTHS AND 12 MINUTE. -- 12 MONTHS. THIS IS A GROUP INTERVENTION. IT'S AN INDIVIDUALIZED INTERVENTION USING MANY iPADS AND ZOOM TO TALK DIRECTLY TO THE CAREGIVER. DELIVER THE INTERVENTION, WE DO IT OVER A PERIOD 12 WEEKS. BECAUSE THERE ARE THAT MANY MODULES. EIGHT BIWEEKLY BOOSTER SESSIONS AND SIX MONTHLY BOOSTER SESSIONS. LET ME TALK ABOUT OUR FINDINGS TO DATE. CAREGIVERS ARE RELIEVED THEY ACTUALLY FINALLY HAVE SOMEBODY WHO IS INTERESTED IN THEM, IN FACT, OUR -- WE HEAR OFTEN, I HEARD A PATIENT IN THE BACKGROUND ONCE WHEN I WAS WATCHING ONE OF THE INTERVENTIONISTS DO THE INTERVENTIONS, YOU MEAN THEY DON'T WANT TO ASK ME ANYTHING? I WANT TO ANSWER SOME QUESTIONS. TYPES OF PATIENTS WE INCLUDE ARE ALL SORTS OF PATIENTS, INCLUDING LVAD PATIENTS SO PEOPLE CARING FOR THEIR LOVED ONE WITH LVAD. STROKE, POST STROKE, MENTAL HEALTH ISSUES, TA VARIETY OF ISSUES. CARING FOR MULTIPLE PATIENTS, NOT JUST ONE PATIENT. OUR CAREGIVER PROFILE INCLUDES LARGELY ELDERLY POPULATION WITH MULTIPLE COMORBIDITIES, SOME DEPRESSION, MANY -- A LOT OF CAREGIVER BURDEN WHO SUFFER THROUGH THINGS AS THE DEATH OF A PATIENT. SO WE HAVE ONLY BEEN CONDUCTING THIS STUDY FOR SIX MONTHS. WE HAVE HAD PATIENTS DIE SOME ARE RELEED THOSE CAREGIVER BURDENS ARE OVER BUT THEN THEY'RE GUILTY ABOUT THAT. ACTUALLY ALL THE CAREGIVERS WHOSE PATIENTS HAVE DIED REMAINED IN OUR STUDY TO CONTINUE. OFTEN -- NOT OFTEN BUT WE HAVE HAD A COUPLE OF CAREGIVERS BECOME THE PATIENT AS THEY DEVELOP ILLNESSES WHICH WE SHOULD EXPECT AND THAT CREATED INTERESTING ISSUES. LAST SLIDE IS ABOUT OPPORTUNITIES FOR ADVANCING CAREGIVER HEALTH. WE REALLY NEED RESEARCH TARGETING POLICY, HEALTHCARE PROVIDER AND HEALTHCARE SYSTEM SUPPORT FOR PROMOTING TRUE FAMILY CENTERED CARE. EVERYBODY SAID THAT. WE NEED TO REALLY LOOK AT THE CONVERSION OF THE CAREGIVER TO THE PATIENT. THIS USUALLY HAS DEVASTATING CONSEQUENCES FOR THE ENTIRE FAMILY UNIT, THE PATIENT OFTEN ENDS UP IN EXTENDED CARE, PEOPLE HAVE TO LEAVE THE HOME. THERE ARE MANY STORIES OF PEOPLE WHO LOSE THEIR HOLMES WHO END UP IN TROUBLE. LONGITUDINAL STUDY OF THE IMPACT OF POOR CAREGIVER HEALTH ON HEALTH OF THE PATIENT AND FAMILY UNIT. FINALLY REALLY SOME INTERESTING USE OF STATE OF THE SCIENCE STATISTICAL METHODS TO DETERMINE IMPACT OF THE INTERACTION OF FAMILY MEMBER HEALTH; SOME PREVIOUS SPEAKERS ALLUDED TO THAT. BUT THERE ARE INTERESTING DIATIC ANALYSES THAT DIRECTLY DETERMINE THOSE INTERESTED IMPACTS. THANK YOU. [APPLAUSE] >> THANK YOU, DR. MOSER. I WOULD NOW LIKE TO INTRODUCE DR. JENNIFER WOLFF, OUR NEXT SPEAKER. DR. WOLFF IS HEALTH PROFESSOR OF HEALTH POLICY AND MANAGEMENT AT THE JOHNS HOPKINS BLOOMBERG SCHOOL OF PUBLIC HEALTH. JOINTLY APPOINTED IN DIVISION OF GERIATRIC MEDICINE AND GERONTOLOGY AT THE JOHNS HOPKINS SCHOOL OF MEDICINE. DR. WOLFF'S RESEARCH FOCUS ON LATE LIFE, FAMILY CAREGIVERRING AND INNOVATIVE MODELS OF CARE FOR OLDER ADULTS WITH COMPLEX HEALTH NEEDS. SHE SERVED ON THE NATIONAL ACADEMIES OF SCIENCES ENGINEERING AND MEDICINE COMMITTEE ON FAMILY CAREGIVING FOR OLDER ADULTS. DR. WOLFF. >> THANK YOU. THANK YOU FOR THE OPPORTUNITY TO PARTICIPATE IN THIS IMPORTANT SUMMIT. ON THE TOPIC OF FAMILY CAREGIVING THROUGHOUT THE LIFE SPAN. BEFORE I START I WOULD LIKE TO ACKNOWLEDGE FUNDERS OF MY WORK AS WELL AS MY VALUED COLLABORATORS AND COLLEAGUES, HIS NEEDS ARE LISTED ON THIS SLIDE. SO I THINK IT'S GREAT THAT NINR IS FRAMING FAMILY CAREGIVING THROUGH THE LENS OF LIFE COURSE PERSPECTIVE. THE WORLD HEALTH ORGANIZATION CHARACTERIZES FAMILY AS THE PRIMARY SOCIAL AGENT AND PROMOTION OF HEALTH AND WELL BEING, THAT IS CERTAINLY TRUE IN CHILDHOOD, ADOLESCENCE AS WE HEARD THIS MORNING BUT EQUALLY TRUE IN ADULTHOOD AND WITHIN THE CONTEXT OF CHRONIC DISABLING CONDITIONS. A NUMBER OF YEARS AGO I HAD THE OPPORTUNITY TO DRAFT THE BACKGROUND REPORT ON INSTITUTE OF MEDICINE RETOOLING FOR AGING AMERICA REPORT. IT WAS PARTICULARLY STRIKING WITHIN THE CONTEXT OF THAT REPORT TO CONTRAST PROFESSIONAL HEALTHCARE WORK FORCE WHO IS WELL EDUCATED AND CREDENTIALED TO FUNCTION WITHIN A CLEARLY DEFINED SCOPE OF PRACTICE AND PROVIDES CARE TYPICALLY IN HIGHLY REGULATED AND CONTROLLED DELIVERY SETTINGS WITH THE FAMILY CAREGIVER WORK FORCE WHO TYPICALLY FALLS INTO THE ROLE ACCIDENTLY WITHOUT FORMAL EDUCATION OR PREPARATION AND OFTEN IS DELIVERING CARE AND WILDLY VARIED HOME ENVIRONMENTS THAT WERE NOT DEVELOPED FOR CARE DELIVERY. HIVER, FAMILY CAREGIVERS ARE MANY WAYS AS WE HEARD THROUGHOUT THE TWO DAYS THE ULTIMATE IN INTEGRATED CARE. AND THEY SPAN DELIVERY SETTINGS FROM HOSPITAL TO POST ACUTE CARE BACK TO THE COMMUNITY, PATCHING TOGETHER OOH FRAGMENTED SERVICE DELIVERY ENVIRONMENT AND WIDE RANGE OF ACTIVITIES FROM PERSONAL CARE, HOUSEHOLD ACTIVITIES TO THE MEDICAL AND NURSING TASKS IN COORDINATION OF CARE WE HEARD DISCUSSED YESTERDAY BY SUSAN RYANHART AND OTHERS. THIS 2001 QUOTE FROM THE AMERICAN MEDICAL ASSOCIATION CATCHES THE IDEA THAT AMERICA OVERWHELMINGLY RELIES ON A SHADOW WORK FORCE OF FAMILY CAREGIVERS. THE MAIN POINT AS HEARD THROUGHOUT THESE TWO DAYS IS THAT FAMILY CAREGIVERS ARE NOW LARGELY INVISIBLE. IN CARE DELIVERY. FAMILY CAREGIVERS OPERATE OUTSIDE OF FORMALLY RECOGNIZED PROFESSIONAL PRACTICE ENHANCING REGULATORY ARRANGEMENTS. AS A RESULT THEIR PRESENCE ISN'T SYSTEMATICALLY CAPTURED IN A WAY THAT ALLOWS UNDERSTANDING OF HOW OFTEN FAMILY CAREGIVERS ARE PRESENT WHO THEY HELP WHAT THEY DO OR HOW INVOLVEMENT AFFECTS CARE DELIVERY OUTCOMES AND MOST IMPORTANT, WHAT BENEFITS MIGHT BE DERIVED FOR INDIVIDUALS FOR FAMILY CAREGIVERS THEMSELVES AS WELL AS FOR SYSTEMS OF CARE BY BETTER MORE PURPOSEFUL INEXPLICIT ATTENTION TO IDENTIFYING SUPPORTING AND PARTNERING WITH FAMILY CAREGIVERS AND CARE DELIVERY. IN THE PAPER LAST YEAR, PUBLISHED LAST YEAR IN JAMA INTERNAL MEDICINE, MY COLLEAGUES AND I PRESENTED FINDINGS FROM LINKED DISABILITY AND CAREGIVER VARY THE NATIONAL AGING TRENDS STUDY AND NATIONAL STUDY OF CAREGIVERS WHERE WE EXAMINED HOW CAREGIVER INVOLVEMENT IN HEALTHCARE OLDER ADULTS HEALTHCARE ACTIVITIES RELATES TO THE TYPES AND INTENSITY OF CAREGIVING ROLES SUPPORTIVE SERVICES USED IN CAREGIVING RELATED EFFECTS. IN THIS STUDY WE FOCUSED ON CAREGIVER WHOSE ARE HELPING WITH TWO WIDELY -- HIGHLY PREVALENT AND CLINICALLY IMPORTANT HEALTH MANAGEMENT ACTIVITIES. WE COMPARED CAREGIVERS WHO BOTH COORDINATED CARE WITH HEALTH PROFESSIONALS AND MANAGE MEDICATIONS WHICH WE DEFINED AS SUBSTANTIAL HEALTHCARE HELP AS -- WE COMPARED WITH CAREGIVERS WHO DIDN'T PROVIDE THIS HELP. WE HAD THREE MAIN FINDINGS. NEARLY 15 MILLION FAMILY UNPAID CAREGIVERS HELPING ABOUT 8 MILLION OLDER ADULTS IN A COMMUNITY WITH DISABILITIES, WE FOUND THAT ABOUT 45% OR 6 1/2 MILLION WERE PROVIDNG SUBSTANTIAL HEALTHCARE HELP. OF THIS GROUP ONE IN FOUR RATED THEIR HEALTH FAIR OR POOR, HALF WERE HELPING OLDER ADULT WITH DEMENTIA. SECOND, WE FOUND THAT CAREGIVERS WHO PROVIDED SUBSTANTIAL HEALTHCARE HELP PROVIDED SIGNIFICANTLY MORE HOURS OF CARE PER WEEK THAN CAREGIVERS WHO DIDN'T PROVIDE THIS HELP. ON THE ORDER OF 28 HOURS OF CARE, AS SHOWN IN DARK BLUE ON THE LEFT PANEL OF THE SLIDE. AS SHOWN IN THE RIGHT PANEL WE FOUND THAT JUST ONE IN FOUR OF THESE CAREGIVERS USED SUPPORTIVE SERVIES INCLUDING RESPITE CARE, ATTENDING SUPPORT GROUP, OR RECEIVING TRAINING OR EDUCATION HOW TO PROVIDE CARE FOR HEALTH PROFESSIONAL. OUR THIRD FINDING AND MOST IMPORTANT FINDING, WAS AFTER ADJUSTING FOR A RANGE OF OLDER ADULTS SOCIO DEMOGRAPHIC AND HEALTH CHARACTERISTICS WE FOUND CAREGIVERS WHO PROVIDED SUBSTANTIAL HEALTHCARE HELP SHOWN IN DARK BLUE WERE TWICE AS LIKELY TO EXPERIENCE SIGNIFICANT EMOTIONAL PHYSICAL AND FINANCIAL DIFFICULTY RELATED TO CAREGIVING, CAREGIVERS WHO DIDN'T PROVIDE THIS HELP. THERE ARE MORE THAN FIVE TIMES LIKELY TO EXPERIENCE REDUCE PARTICIPATION IN SOCIAL LEISURE ACTIVITIES SUCH AS ATTENDING RELIGIOUS SERVICES OR GETTING TOGETHER A FAMILY OR FRIENDS THEY IDENTIFIED AS BEING IMPORTANT TO THEM. WE FOUND RATES OF EMPLOYMENT DIDN'T DIFFER BY VIRTUE OF WHETHER CAREGIVERS WERE PROVIDING HEALTHCARE HELP. HOWEVER, WORK PRODUCTIVITY LOSS WAS THREE TIMES AS HIGH AMONG CAREGIVERS WHO PROVIDED SUBSTANTIAL HEALTHCARE HELP AS CAREGIVERS WHO DIDN'T PROVIDE THIS HELP. OUR STUDY IS IMPORTANT, IT ESTABLISHES THE HARD WORK OF MANAGING COMPLEX CARE EXTENDS WELL BEYOND HEALTHCARE PROFESSIONALS AND INDIVIDUALS TO FAMILIES AND FAMILY CAREGIVERS. ESTABLISHES THE ABILITY THAT THEORETICALLY BE ABLE TO IDENTIFY AT RISK CAREGIVERS WITHIN SYSTEMS OF CARE. SO WE KNOW CAREGIVING IS FAR FROM EVENLY DISTRIBUTED ACROSS SOCIETY. CERTAIN SUBGROUPS GREATER RISK FOR MEETING AND PROVIDING CARE. FOR EXAMPLE, WORK BY JUDY CASPER FINDS ABOUT 10% OLDER ADULTS WITH DEMENTIA ACCOUNT FOR ROUGHLY 40% OF ALL CAREGIVING HOURS. BECAUSE DEMENTIA AFFECTS COGNITIVE PROCESSES IN JUDGMENT, FAMILY CAREGIVERS OF OLDER ADULTS ARE PIVOTAL IN NOT ONLY HELPING WITH EVERY DAY ACTIVITIES BUT ALSO IN MANAGING HEALTH AND HEALTH SYSTEM INTERACTIONS. I WOULD LIKE TO READ THE WORDS OF STUDY PARTICIPANT WHO TALKED TO US ABOUT HER INTERACTIONS WITH PRIMARY CARE PROVIDERS WHO CARED FOR HER HUSBAND WITH MCI, MILD COGNITIVE IMPAIRMENT. SHE SAYS IF SOMEONE WANTS TO BE ALONE WITH HIM, IF A DOCTOR WANTS ALONE TIME THAT'S FINE BUT THE FACT OF THE MATTER IS HE'S NOT GOING TO REMEMBER WHAT WAS TALKED ABOUT. THAT'S A BIG PROBLEM. THE OTHER BIG PROBLEM IS DOCTORS ASK QUESTION AND DOESN'T KNOW THE ANSWER BUT I DO. WHAT MEDICATIONS ARE YOU ON AND FOR WHY? THOSE QUESTIONS HE CAN'T ANSWER. I CAN AND THEN ACTUAL HI SOMETIMES THE DOCTOR GETS ANGRY WHEN I ANSWER AND I SAY LET HIM ANSWER. THE FACT OF THE MATTER IS, HE'S NOT GOING TO REMEMBER WHAT TO ASK, IF I WRITE A NOTE HE MIGHT FORGET TO LOOK. SO THE MAIN POINT IS THE LACK OF DEFINED ROLE FOR FAMILIES WITHIN CARE DELIVERY PRESENCE NUMEROUS CHALLENGES WITH RESPECT TO ABILITY TO ENGAGE IN FACE TO FACE AND IN ELECTRONIC INTERACTIONS. AND OFTEN LEAVES THEM IN AN ADVERSARIAL POSITION WITH RESPECT TO BEING ABLE TO EFFECTIVELY ADVOCATE FOR THE PATIENT, BEING ABLE TO ACCESS INFORMATION THAT'S NECESSARY FOR APPROPRIATE CARE AND CARE COORDINATION, AND COMMUNICATING WITH OTHER HEALTH PROFESSIONALS. AS WE HEARD FROM GRACE YESTERDAY, FAMILIES AND FAMILY CAREGIVERS PLAY A PIVOTAL ROLE IN DELIVERING HIGH VALUE CARE THROUGHOUT THE SYSTEM. THE DEPARTMENT OF HEALTH AND HUMAN SERVICES NATIONAL QUALITY STRATEGIES SETS FORTH GUIDING VISION FOR HIGH PERFORMING HIGH VALUE CARE DELIVERY SYSTEM AND IT STATES A COMMITMENT TO MEASURING WHAT MATTERS TO PATIENTS AND FAMILIS. WITH PERSON AND FAMILY CENTERED CARE LISTED AS ONE OF SIX CENTRAL PRIORITY AREAS. THE DATA AND THE QUOTE I PRESENTED, SUGGESTS VAST ROOM FOR IMPROVEMENT WITH RESPECT TO SYSTEM RECOGNITION AND SUPPORT FOR FAMILY CAREGIVERS. IF WE ACCEPT THE PREMISE OF THE WORLD HEALTH ORGANIZATION THAT FAMILIES ARE THE FOUNDATION OF HEALTH THEN THE QUESTION, HOW CAN THE HEALTH SYSTEM DO A BETTER JOB EVALUATING SUPPORTING NOT JUST INDIVIDUALS BUT FAMILIES AND FAMILY CAREGIVERS WHO PLAY SUCH AN IMPORTANT ROLE IN THE CARE OF INDIVIDUALS WITH SOME OF THE MOST COMPLEX HEALTH NEEDS. SO I WOULD LIKE TO HIGHLIGHTED SEVERAL STRATEGIES THAT OUR TEAMS HAVE BEEN THINKING ABOUT THAT ARE FOCUSED ON PRAGMATIC CONSUMER ORIENTED STRATEGIES THAT COULD IMPROVE COMMUNICATION BETWEEN FAMILIES AND THE CARE DELIVERY SYSTEM THAT HAVE MORE MINIMAL IMPACTS ON PROVIDERS AND THEREFORE POTENTIALLY GREATER ABILITY POISED FOR WIDESPREAD DIFFUSION. WE HAVE HEARD COMMUNICATION THE LAST TWO DAYS AND IT'S DESCRIBED THE MAIN INGREDIENT OF MEDICAL CARE, THE PROCESS BY WHICH INDIVIDUALS EXCHANGE INFORMATION ABOUT INDIVIDUALS HEALTH, SYMPTOMS AND GOALS AND PRIORITIES. IN WHICH IT'S THE PROCESS THROUGH WHICH DELIBERATIONS ARE MADE HON CLINICAL COURSE OF ACTION. WE KNOW COMMUNICATION IS PARTICULARLY IMPORTANT IN CHALLENGING IN CARE OF INDIVIDUALS WITH COMPLEX HEALTH NEEDS WHO RELY ON FAMILY CAREGIVER. THOUGH A ROBUST LINE OF INTERVENTIONAL RESEARCH DESCRIBES THE BENEFIT OF PRE-VISIT AGENDA SETTING STRATEGIES QUESTION PROMPTS, AND COACHING INTERVENTIONS, TO ENGAGE PATIENTS MORE ACTIVELY IN CARE, THERE'S LITTLE ATTENTION DIRECTED AT INTERVENTIONS TO STRENGTHEN THE INDIVIDUAL FAMILY UNIT FOR THOSE WHO INTERACT WITH THE SYSTEM ALONG WITH FAMILY MEMBER. OUR GROUP HAS FOUND A PERSON FAMILY AGENDA SETTING ACTIVITY THAT'S SELF-ADMINISTERED BY OLDER ADULTS AND FAMILY MEMBERS IN THE WAITING ROOM BEFORE MEDICAL VISIT IS AN EFFECTIVE WAY TO IMPROVE THE PATIENT MEDICAL COMMUNICATION BY ELICITING ALIGNING INDIVIDUAL AND FAMILIES EXPECTATIONS AND CLARIFYING THEIR VISIT OBJECTIVES. WITH SUPPORT OF NATIONAL INSTITUTE ON AGING, WE'RE NOW TESTING THIS APPROACH IN PRIMARY CARE FOR OLDER ADULTS WITH COGNITIVE IMPAIRMENT WHO ATTEND MEDICAL VISITS WITH FAMILY MEMBER BUT THIS APPROACH COULD BE A RELEVANT TO A WIDE RANGE OF PATIENT POPULATIONS AND SETTINGS OF CARE. ANOTHER PROMISING DIRECTION RELATES TO ENGAGING FAMILY CAREGIVERS AND CONSUMER HEALTH INFORMATION TECHNOLOGY. FOR EXAMPLE, THE PROVIDER SPONSORED PATIENT PORTAL HAS BEEN WIDELY ENDORSED AS A STRATEGY TO ENGAGE ACTIVELY IN CARE BUT AS WE HEARD FROM SARA YESTERDAY, IT'S NOT ACCESSIBLE TO ALL. FUNCTIONALITY TO EXTEND FAMILY CAREGIVERS THEIR OWN IDENTITY CREDENTIALS TO SHARE ACCESS TO A PATIENT'S PORTAL ACCOUNT AS DESIRED BY THE PATIENT IS WIDELY AVAILABLE BUT UPTAKE TO DATE IS LIMITED FOR A RANGE OF REASONS. HOWEVER EMERGING EVIDENCE FROM OUR GROUP AND OTHERS FINDS SHARED ACCESS TO THE PATIENT PORTAL IS A STRATEGY THAT BOTH RESPECTS INDIVIDUAL PATIENT PREFERENCES FOR PROVIDING INFORMATION ACCESS TO FAMILY, WAND PROVIDES FAMILIES WITH GREATER LEGITIMACY INTERACTING ELECTRONICALLY WITH HEALTHCARE PROVIDERS AND FACILITATING TIMELY ACCURATE INFORMATION ABOUT THE PATIENT HEALTH AND TREATMENTS. AND IN PARTNERSHIP COLLEAGUES AT GUYSINGER HEALTH SYSTEM WE FOUND DELIVERING DOCTORS ELECTRONIC VISIT NOTES THROUGH SHARED ACCESS TO THE PATIENT PORTAL, LED TO IMPROVEMENT IN PATIENT AND FAMILY REPORTED COMMUNICATION WITH PROVIDERS AND INCREASED PATIENTS PERCEIVED CAPACITY TO MANAGE THEIR CARE. FINALLY, I WANT TO SAY THOUGH CONSUMER ORIENTED STRATEGIES ARE AN IMPORTANT WAY TO BETTER REACH FAMILY CAREGIVERS, THEY REALLY WILL ONLY GO SO FAR IN TERMS OF BEING ABLE TO MEET THE WIDE RANGE OF NEEDS OF FAMILY CAREGIVERS SO MORE BROADLY THERE'S A NEED FOR DEVELOPING A MORE COMPREHENSIVE INFRASTRUCTURE TO SUPPORT SYSTEMATIC IDENTIFICATION AND SUPPORT IN PARTNERSHIP OF FAMILY CAREGIVERS IN CARE DELIVERY. TO MOVE BEYOND ASSESSING THE NEAR AVAILABILITY OF HELP FOR PATIENTS WITH COMPLEX HEALTH NEEDS TOWARD ASSESSING NATURE AND QUALITY OF HELP INCLUDING UNDERSTANDING FROM FAMILY CAREGIVERS PERSPECTIVES, THEIR CAPACITY, THEIR NEEDS, THEIR STRENGTHS AND THEIR CHALLENGES TO FACILITATE INTERVENTION IN RISKY SITUATIONS AND ENSURE FAMILIES ARE NOT BEING ASKED TO DO TOO TOO MUCH, SUCH EITHER THEY OR PATIENT IS PLACED IN HARM'S WAY. SO WE HAVE HEARD A LOT ABOUT THE CONCERNS RELATED TO POPULATION AGING. AND HOW POPULATION AGING WILL AFFECT THE AVAILABILITY AND EXPERIENCES OF FAMILY CAREGIVERS. HOWEVER, INFORMATION REGARDING THE EXTENT TO WHICH SUCH CONCERNS ARE WELL-FOUNDED ARE STRIKINGLY SPARSE. OUR TEAM RECENTLY PUBLISHED A PAPER WHERE WE EXAMINED TRENDS ACROSS FOUR WAVES OF LINKED NATIONALLY REPRESENTATIVE DISABILITY AND CAREGIVER SURVEYS FOCUSING ON OLDER ADULTS RECEIVING HELP FROM A FAMILY OR UNPAID CAREGIVER WITH SELF-CARE OR MOBILITY ACTIVITIES FOR WHICH THE DISABILITY PROTOCOL WAS COMPARABLE ACROSS TWO DIFFERENT SURVEYS. IN FACT WE DIDN'T FIND EVIDENCE OF REDUCTIONS IN AVAILABILITY OF FAMILY CAREGIVER SUPPORT AND IN FACT, WE FOUND INCREMENTAL SHIFTS SHOWN ON THE SLIDES TOWARDS FEWER CAREGIVERS EXPERIENCING SUBSTANTIAL FINANCIAL DIFFICULTITY DUE TO CAREGIVING BETWEEN 1999 SHOWN IN WHITE ON THE LEFT AND 2015. SHOWN ON THE RIGHT. WE FOUND INCREMENTAL INCREASES IN USE OF RESPITE CARE A. SO THESE FINDINGS ARE SOMEWHAT COUNTER TO EXPECTATIONS AND ENCOURAGING BUT WE NOTED THESE TRENDS OCCURRED IN PARALLEL WITH OLDER ADULTS BEING YOUNGER, BETTER EDUCATED AND LESS IMPAIRED, CONSISTENT WITH BEING AT EARLY STAGES OF THE BABY BOOM AND IN FACT, THE BIGGEST REDUCTIONS IN DIFFICULTY WERE EXPERIENCED AMONG SPOUSAL CAREGIVERRINGS. THIS SPEAKS TO THE IMPORTANCE AGING OF POPULATION INTO 85 AND OVER AS POPULATION CONTINUES TO AGE AND POPULATION AGES 85 AND OLDER ROUGHLY DOUBLES IN THE COMING YEARS, IT WILL BE INCREASINGLY IMPORTANT TO DEVELOP MONITORING SURVEILLANCE SYSTEMS SO WE CAN BETTER ASSESS THE UTILITY OF OUR EFFORTS TO DEVELOP PROGRAMS AND POLICIES SUCH AS THE CARE ACT TO BETTER SUPPORT FAMILY CAREGIVERS. SO I WANT TO HIGHLIGHT THREE BROAD RECOMMENDATIONS RELATING TO EVIDENCE GAPS PARTICULARLY IMPORTANT AREAS FOR FUTURE RESEARCH. I SEE I'M OUT OF TIME SO I WILL BE BRIEF. THE FIRST AS I MENTIONED IS THE NEED TO DEVELOP DATA INFRASTRUCTURE TOE SUPPORT MONITORING AND SURVEILLANCE OF FAMILY CAREGIVERS. THIS RELATES TO BOTH POPULATION BASED SURVEILLANCE EFFORTS AS WELL AS SURVEILLANCE EFFORTS WITHIN CARE DELIVERY SO THAT WE CAN EXAMINE FOR EXAMPLE EFFECTS OF THE CARE ACT OR OTHER SYSTEMS APPROACHES SUCH AS ACCOUNTABLE CARE HOME HEALTHCARE. IN THIS INFRASTRUCTURE WILL NOT ONLY NEED DATA COLLECTION CAPACITY BUT MEASURES TO UNDERSTAND FAMILY CAREGIVER EXPERIENCES. THIS RELATES TO THE MEASURES WE HEARD ABOUT YESTERDAY THAT COURTNEY HAS BEEN DEVELOPING AROUND CAREGIVER EXPERIENCE OF CARE. ANOTHER IMPORTANT GAP IN PROMISING AREA RELATES TO BRINGING IMPLEMENTATION SCIENCE TO CAREGIVER INTERVENTION RESEARCH REALLY FOCUSING ON EMBEDDED DESIGNS AND INCLUDING DIVERSE STAKEHOLDERS IN THE DEVELOPMENT OF INTERVENTIONS AT THE OUTSET. FINALLY, THE FOCUS ON INTERPROFESSIONAL TEAM BASED CARE AND COMPETENCIES AND BRINGING ALL THAT NINR HAS TO BEAR ON THE DEVELOPMENT OF CURRICULUM AND THE DISSEMINATION OF CURRICULUM TO BETTER SUPPORT THAT PROFESSIONAL HEALTHCARE WORK FORCE TO DELIVER FAMILY CENTERED CARE AND PRACTICE. THANK YOU. [APPLAUSE] >> THANK YOU VERY MUCH, DR. WOLFF. OUR FINAL PANELIST TODAY SYSTEM PHILLIP STONE. DR. STONE IS PROFESSOR OF FAMILY MEDICINE AND GERIATRICIAN, UNIVERSITY OF NORTH CAROLINA WHERE HE HAS CO-DIRECTS RESEARCH PROGRAM ON AGING DISABILITY AND LONG TERM CARE. DR. SLOAN AS SERVED IN A NUMBER OF ROLES CO-FOUNDER OF DEMENTIA TRAINING SUPPORT NETWORK PHYSICIAN AND CONSULTANTN'T SO HE'S REALLY BEEN OUT IN THE COMMUNITY. HE'S CONDUCTED STUDIES IN NURSING HOMES AND ASSISTED LIVING FACILITIES AND WRITTEN SEVERAL BOOKS, DR. SLOANE RECEIVED THE PIONEERING AWARD FOR THE ALZHEIMER'S ASSOCIATION. DR. SLOANE. [APPLAUSE] >> I'M HAPPY TO BE HERE TO SPEAK TO YOU. THANK YOU FOR COMING. NOT NECESSARILY THAT YOU CAME TO HEAR ME. I KNOW WHAT YOU'RE THINKING. HOW MANY ARE THINKING MY BRAIN IS FULL, I HAVE NOTHING MORE THAT I CAN ACCOMMODATE. AND THE REST OF YOU ARE THINKING MAYBE LIKE THEY'RE ONLY A FEW THINGS SEPARATING ME FROM THE GLORIES OF WASHINGTON D.C. TRAFFIC. SO I GUESS I'LL TALK NOR A LONG TIME THEN. BUT SERIOUSLY, I'M HERE TO TALK ABOUT BODY OF WORK AROUND MANAGING CHRONIC ACUTE ILLNESS IN PERSONS WITH ALZHEIMER'S DISEASE RELATED DEMENTIA WHICH IS PARTICULARLY GROWING CAREGIVER CHALLENGE. I'M GOING TO FIGURE HOW TO MAKE THESE THINGS WORK GREAT. DISCLOSURE. RESEARCH FUNDING PROVIDED BY GRANT FROM NATIONAL INSTITUTE OF NURSING RESEARCH. AND I'M EDITOR OF A BOOK THAT CAME OUT THAT WE'LL TALK ABOUT CALLED THE ALZHEIMER'S MEDICAL ADVISOR. WE ALL KNOW THE LARGE GROWING SHADOW THAT ALZHEIMER'S DISEASE RELATED DISORDERS CAST ON SOCIETY AND FAMILIES. WHAT MANY DON'T REALIZE IS BECAUSE PEOPLE WITH COGNITIVE DISORDERS TEND TO BE QUITE ELDERLY, OFTEN IN THEIR '80s AND EVEN THEIR '90s, CAREGIVING INVOLVES NOT JUST MANAGING THE DISEASE BUT MANAGING A WHOLE HOST OF OTHER DISEASES AND SYMPTOMS. THIS IS RELATIVELY NEW INFORMATION FOR MANY PEOPLE INCLUDING POLICY MAKERS. THIS IS FROM WRP, 60% OF CAREGIVERS TAKE ON COMPLEX MEDICAL TASKS ONCE PERFORMED BY DOCTORS AND NURSES WHICH PLACES ENORMOUS BURDEN ON THEM PHYSICALLY, PSYCHOLOGICALLY AND SPIRITUALLY. WHAT THIS MEANS FOR CAREGIVER SOMEONE WITH DEMENTIA IS THAT THEY HAVE TO DEAL WITH THESE CO-MORBID CONDITION IT IS HIGHER ILLNESS BURDEN, GREATER RISK OF INJURY COMMON IN THE POPULATION. THEY HAVE TO MANAGE DE-- THEY HAVE TO MAKE DECISIONS BECAUSE THE PERSONAL WITH THE ILLNESS USUALLY ISN'T CAPABLE OF MAKING A DECISION. AND OUT IN THE WORLD OF THE INTERNET AND OTHER RESOURCES FOR PERSONS WITH ALZHEIMER'S DISEASE AND CAREGIVERS, THERE'S NOT MUCH OF ANYTHING ABOUT THE BEHAVIORAL MANIFESTATIONS OF DISEASE. SO THERE'S LITTLE GUIDANCE IN DECISION MAKING. SO THIS WAS AN AREA THAT WE WORKED ON I SHOULD MENTION THE IMPORTANCE OF COMORBIDITY IN ALZHEIMER'S DISEASE IS A RELATIVELY NEW THING. NINR WAS EARLY IN IDENTIFYING THIS AND THEY PUT TOGETHER SOME PROPOSALS AND FINANCING PROJECTS AROUND THIS TO HELP RAISE AWARENESS ABOUT THIS. HERE ARE THREE MAIN QUESTIONS WE ADDRESSED IN P OUR RESERVING. FIRST, IS THERE VALUE IN CATEGORIZING SYMPTOMS FOR EDUCATIONAL AND FOR ASSESSMENT PURPOSES INTO ORGAN SPECIFIC BEHAVIORAL AND NON-SPECIFIC? AND THE BEHAVIORAL WE HAD A COLLEAGUE IN OUR GROUP WHO IDENTIFIED THERE WAS A LOT OF INFORMATION ABOUT ACTIVE BEHAVIORS LIKE HITTING, AGITATION BUT PASSIVE ONES TEND TO GET PEOPLE IN THE HOSPITAL AND INDICATE ILLNESS SO WE LOOKED AT THOSE AS WELL. WHAT RESOURCES HELP FAMILY CAREGIVERS IMPROVE SKILLS AND CONFIDENCE IN ADDRESSING SIGNS AND SYMPTOMS IN PERSONS WITH DEMENTIA. FINALLY, CAN RESOURCES BE MADE AVAILABLE THAT EFFECTIVELY REACH A WIDE RANGE OF CAREGIVERS BECAUSE WE WERE INTERESTED IN DISSEMINATION. WHICH IS NOT TO SAY WE DIDN'T DO A LOT OF BACK GROUND RESEARCH SUMMARIES OF EVIDENCE BUT ALSO WANTED TO CARRY OUT TO DISSEMINATION. I CAN'T PUT FIVE YEARS OF RESEARCH INTO 15 MINUTES SO I WILL MANAGE THIS TO HIT THE HIGH POINTS. ONE THING I WANT TO TALK ABOUT IS RESEARCH WITH 143 FAMILY CAREGIVERS WHERE WE FOLLOW THEM SIX MONTHS TO SEE HOW OFTEN THEY HAD TO DEAL WITH NEW OR WORSENING SIGNS AN SYMPTOMS. WHAT WE FOUND IS 97% REPORTED AT LEAST ONE NEW OR WORSENING SIGN OR SYMPTOM TO DEAL WITH, THE AVERAGE WAS 7. 90% HAD TO DEAL WITH A MEDICAL, ORGAN SPECIFIC SIGN OR SYMPTOM, A BEHAVIORAL ONE AND A NON-SPECIFIC ONE. NOW, THAT CATEGORIZATION YOU CAN SEE THESE ARE THE TOP TEN, THE ORGAN SPECIFIC ONES DIDN'T FALL OUT WELL IN THIS BUT IT'S BECAUSE THERE WERE SO MANY OF THEM THEY WERE REALLY JUST ABOUT EQUALLY REPRESENTED TO THE OTHERS. BUT THE NON-SPECIFICS ARE PARTICULARLY BRIGHTENING BECAUSE IT COULD BE ANYTHING AND THE CAREGIVERS HAVE TO VIEW, HAVE TO MAKE DECISIONS AND THE DECISIONS ARE HAR TO MAKE. IN OUR RESEARCH WE WANTED TO EXPLAIN IMPACT OF INTERVENTION DEVELOPED ON CAREGIVERS SO WE HAD TO DEVELOP AND VALIDATE A MEASURE OF CAREGIVER CONFIDENCE IN THEIR ABILITY TO MANAGE SIGNS AND SYMPTOMS BECAUSE THERE WAS CONFIDENCE IN BEHAVIORAL SYMPTOMS BUT NOTHING ELSE SO THIS WAS PUBLISHED IN THE AMERICAN JOURNAL OF ALZHEIMER'S DISEASE AND DEMENTIA THIS YEAR. ANOTHER THING WE DID IS PUT TOGETHER AN ADVISORY GROUP OF CAREGIVERS, NINE WITH ALZHEIMER'S THEY WERE NOT RESEARCH SUBJECTS, THEY WERE MEMBERS OF OUR RESEARCH TEAM. THEY MET MONTHLY, WE WOULD COME TO THEM WITH IDEAS AND THEY WOULD COME BACK TO US AND TELL US WHAT WE SHOULD DO DIFFERENTLY. THE NEXT MONTH WE COME BACK WITH IDEAS AGAIN, IT WAS TREMENDOUSLY HELPFUL IN DEVELOPING OUR METHODS. SO AMONG THE THINGS THEY TOLD US WAS THAT WE SHOULD FOCUS ON HELPING CAREGIVERS KNOW WHAT TO DO, INCLUDING HOW TO ACT FAST, HOW TO MANAGE THINGS AT HOME. THEY WANTED GUIDANCE ON SKILLS THAT WOULD HELP THEM DO A BETTER JOB. AS WE WERE GOING ABOUT THIS WE THOUGHT FIRST WE COME UP WITH ALGORITHMS TO ADVISE CAREGIVERS HOW TO DEAL WITH SYMPTOMS. BUT WE HAD AN EYE OPENER AT THE CALL CENTERS, MEDICAL PRACTICES HOSPITALS ORGANIZE FOR CAREGIVERS. IF YOU LOOK AT THE PROTOCOL THEY TELL EVERYBODY TO GO TO THE DOCTOR. EXCEPT IF ADMINISTRATIVE LIKE NEEDING MEDICATION REFILL. SO THEY WEREN'T HELPFUL AND WE HAD TO THINK HOW TO ADVISE WITHOUT TELLING THEM TO GO TO THE DOCTOR AND WHAT WE HAVE DONE IS REALLY TRIED TO EMPOWER THE CAREGIVERS TO MAKE THE DECISION THEMSELVES, WE GIVE THEM THE TOOLS BUT DON'T TELL THEM WHAT TO DO. THAT SEEMED TO WORK. SO I WANT TO TALK MOSTLY IN THE REMAINING TIME ABOUT HOW WE USE THESE DATA TO TRY TO HELP CAREGIVERS. ANOTHER THEIR ADVISE WE DEVELOPED A WEBSITE WITH A NUMBER OF FEATURES THAT HELPED CAREGIVERS KNOW WHAT TO DO. LEFT-HAND SIDE YOU CAN SEE AREAS ON THE WEBSITE. I WANT TO HIGHLIGHT A COUPLE OF PAGES. THIS IS ONE OF OUR 50 SOME PAGES IN VARIOUS TYPES OF SIGNS AND SYMPTOMS. FOR EACH OF THESE, WE HAVE SECTIONS ON FACTS ABOUT IT, WRITTEN IN SIMPLE LANGUAGE AND THEN WE HAVE WARNING SIGNS THAT MIGHT INDICATE IT'S SERIOUS AND IF YOU NEED TO ACT FAST. JUST GO HERE AND WE HAVE VERY EXPLICIT INSTRUCTIONS WHAT TO DO. THEN WE HAVE PUT THE INFORMATION TOGETHER SO IF YOU CALL YOUR DOCTOR, CALL YOUR NURSE, OR YOUR DAUGHTER WHO IS A NURSE SAY IN ANOTHER CITY, HOW TO HAVE A CONVERSATION THAT WILL GET YOU THE ANSWERS YOU NEED. THEN A LARGE SECTION PROVIDING CARE YOURSELF. WE HAVE A BUNCH OF SECTIONS, I CAN'T HIGHLIGHT THEM ALL BUT WE HAD ONE ALSO WORKING WITH HEALTHCARE SYSTEM. WE HAVE GOT SECTIONS, WE HAVE PAGES ON WHAT TO DO WHEN SOMEONE WITH ALZHEIMER'S HAS TO GO TO THE MEDICAL OFFICE, WE HAVE CHECKLISTS WHAT TO BRING OR THINK ABOUT, HOW TO TALK TO STAFF ABOUT CERTAIN THINGS. AND THESE HAVE BEEN VERY HELPFUL TO OUR CAREGIVERS. WE ALSO DEVELOPED SOME VIDEO, TO HELP TRAIN, OBVIOUSLY I CAN'T SHOW ALL OF THEM, I HAVE A COUPLE OF FEW ON PAIN DETECTION AND MANAGEMENT. >> WELCOME TO ALZHEIMER'S MEDICAL ADVISERS TRAINING PROGRAM FOR FAMILY CAREGIVERS ON DETECTING AND DEALING WITH PAIN IN PERSONS WITH ALZHEIMER'S DISEASE AND OTHER DEMENTIAS. IN THIS VIDEO, YOU WILL LEARN THE COMMON CAUSES OF PAIN IN PEOPLE WITH DEMENTIA. THE DIFFERENT WAYS PEOPLE WITH DEMENTIA SHOW THEIR PAIN. AND TIPS FOR PREVENTING PAIN DURING DAILY HOME CARE. >> WE HAD CAREGIVERS USE, WE HAD ACCESS TO THIS WEBSITE, WE COULDN'T CONTROL WHETHER IT WAS USED BUT WE GAVE THEM ACCESS TO IT. WE FOUND THAT HAVING ACCESS TO THESE RESOURCES INCREASED THEIR CONFIDENCE AND REDUCED SUBSCALE BURDEN THAT HAS MOST TO DO WITH DAY TO DAY CAREGIVERRING TASKS. SO IT IS CLEAR CAREGIVERS WILL USE RESOURCES IF WE CAN GET TO THEM IN FORMATS THEY CAN USE. BUT ABOUT A THIRD DON'T USE THE WEB FOR MEDICAL INFORMATION SO ONCE AGAIN WE ASKED CAREGIVERS WOULD YOU LIKE AN APP FOR YOUR PHONE, WHAT WOULD YOU LIKE, THEY WANTED AK BOO. WANTED A BOOK. ONE THING WE LEARNED DEVELOPING THIS BOOK WHICH CAME OUT THREE WEEKS AGO, WE DISCOVERED THAT WHEN YOU HAVE A WEBSITE YOU HAVE NO LIMIT IN TERMS OF WORDS SO THE BOOK HAS A THIRD AS MANY WORDS AS THE WEBSITE AND WAY IT'S MUCH BETTER BECAUSE IT'S CONCISE, WE WORKEDDED WITH A GRAPHIC DESIGNER TO MAKE IT ATTRACTIVE, THIS IS A SAMPLE PAGE ON FALLS AND FALLING. EVERYONE OF THE SYMPTOMS IS TREATED THIS WAY, WE SHOW THE BASIC FACTS, IN A BULLETED MANNER. THEN WE TALK ABOUT WHAT TO LOOK FOR. WHAT ARE THE WARNING SIGNS, AN EMERGENCY OR OTHER SIGNS YOU MIGHT NEED TO TALK TO A DOCTOR ABOUT IT. THEN WE HAVE TIPS ON PROVIDING CARE AT HOME. AND FINALLY FOR EACH OF THESE WE HAVE A SECTION ON HOW THE CAREGIVER CAN MANAGE THEIR OWN SAFETY AND STRESS BECAUSE FOR THINGS LIKE DIARRHEA, WE HAVE SPECIFIC RECOMMENDATIONS HOW TO STAY SAFE. THERE'S A LOT MORE TO DO ABOUT THIS. SO I WANT TO TAKE THE LAST COUPLE OF MINUTES TO TALK IN GREATER DEPTH ABOUT THINGS THAT ARE PART OF OUR RESERVING AGENDA. FUTURE RESEARCH AGENDA. I THINK A MAJOR AREA IS BETTER UNDERSTANDING AND PROVIDING MORE GUIDANCE ON THE COMMON CHALLENGING SYMPTOMS BECAUSE MANAGING CERTAIN SYMPTOMS ARE SOMETIMES A STRAW THAT BREAKS THE BACK METAPHORICALLY IN TERMS OF CAREGIVER MANAGING SOMEBODY AT HOME. AND WE NEED RESEARCH ON SPECIFIC SYMPTOMS IN PERSONS WITH DEMENTIA. READING ABOUT IT IS DIFFERENT THAN KNOWING HOW TO MANAGE IT IF THE PERSON HAS COGNITIVE DISORDER. AND PARTICULARLY THOSE ASSOCIATED WITH HOSPITALIZATION OR EMERGENCY VISITS SUCH ADS NOT EATING OR DRINKING, AND WE HAVE IDENTIFIED WHAT THOSE ARE. ALSO THOSE CHALLENGING TO ASSESS AND MANAGE AT HOME. EXAMPLES. AMONG COMMON CHALLENGING ORGAN SPECIFIC SYMPTOMS, VOICE AND SPEAKING PROBLEMS YOU COULD SEE NOTICE THE PREVIOUS TABLE A FEW SLIDES EARLIER, IT WAS THE MOST COMMON ORGAN SPECIFIC SYMPTOM, I WAS TOTALLY SURPRISED. WHAT DOES THAT MEAN AND HOW CAN CAREGIVERS KNOW HOW TO DEAL WITH THAT? URINE INCONTINENCE IS A BIG ONE, ALWAYS A REASON FOR INSTITUTIONALIZATION, AND THE SUSPECTED URINARY TRACK INFECTION IS A BUG BOO THE MEDICAL PROFESSION PUT UPON THE CONSUMER THAT PULL IDEA THAT EVERYBODY CAN BE URINE INFECTION. IN FACT, WE'LL TALK IN A SECOND. ANOTHER AREA IS A NON-SPECIFIC SYMPTOM. THE ONES SO VAGUE AND COMMON LIKE DECREASED ACTIVITY, NOT EATING. CHANGE FROM DAY TO DAY AND WHEN IS IT TIME TO GET TESTS, DETERMINE WHETHER THEY'RE SICK, WHETHER YOU CAN WRITE IT OUT AND DO SOME VERY SPECIFI HOME MONITORING HOME CARE ISSUES. NIGHTTIME SLEEP PROBLEMS AND DEMENTIA, A BIG ISSUE. THERE'S SOME RESEARCH BUT IN TERMS OF MANAGEMENT AND HELPING FAMILIES, WE NEED MORE. THE OTHER THING I WANT TO TALK ABOUT IS FOCUS ON MENTAL STATUS CHANGE IN PRE-DELIRIUM. FROM THE DATA THE COMMON INDIVIDUAL SYMPTOM CAREGIVERS TALK ABOUT IS INCREASED CONFUSION. GO THE MEDICALCAL LITERATURE THEY TALK ABOUT INCREASED CONFUSION IS A WARNING SIGN OF PNEUMONIA, SERIOUS ILLNESS, BECAUSE IT'S THOUGHT OF AS DELIRIUM. BUT HOW DOES A CAREGIVER DEAL WITH THAT WHEN COGNITIVE STATUS FLUCTUATES ON A DAY-TO-DAY BASIS. WE KNOW THIS IS A BIG ISSUE BECAUSE IN NURSING HOMES AND OTHER RESEARCH, WE FOUND THE MOST COMMON REASON CULTURES ARE IN A NURSING HOME SETTING IS CHANGES IN COGNITION. OUR CAREGIVERS DON'T ASSOCIATE CHANGES IN COGNITION WITH HOSPITALIZATION. THEY SEE IT A LOT BUT DON'T HOSPITALIZE THEM FOR IT BECAUSE OF IT. NURSING DOESN'T DO A GOOD JOB. LEARNING HOW TO IDENTIFY PRE-DELIRIUM, THAT WILL HELP IDENTIFY CENSUS EARLY, THE AREA IS RIPE FOR MORE RESEARCH. FINALLY, SITES OF CARE LIKE EMERGENCY DEPARTMENT, SOMEBODY MENTIONED THAT EARLY, MORE WORK NEEDS TO BE DONE HOW CAREGIVERS MANAGE WITH THAT PARTICULARLY ABOUT WHAT SYMPTOMS NEED WHAT KINDS OF EVALUATION. LAST SLIDE IS ACKNOWLEDGMENTS. I NOTICED THAT NOWHERE IN THIS WHOLE SLIDE INCLUDING THE FIRST SLIDE, IS MY NAME. I CONCLUDED THAT IS PROBABLY OKAY BECAUSE MY STAGE, I'M MORE INTERESTED IN OTHER PEOPLE DEVELOPMENT THAN MY OWN. SO I HOPE THIS IS HELPFUL TO YOU AND HAPPY TO STAY FOR QUESTIONS AFTERWARDS. THANK YOU. [APPLAUSE] >> OKAY, AS THOSE WERE THREE GREAT TALKS. I APPRECIATED LISTENING TO DEBRA, JENNIFER AND PHILLIP ON SUPPORT FOR CHRONIC CONDITIONS. AND JUST TO SUM RIDES AS WE SHIFT GEARS AND BRING UP A LITTLE BIT OF DISCUSSION FROM THE AUDIENCE, DEBRA STARTED BY SHOWING SOME OF THE REAL IMPACT OF CAREGIVING STRESS PARTICULARLY CARDIOVASCULAR SIGNS AND SURROGATE MEASURES SHE'S STUDYING. SHE BROUGHT US TO THE ENVIRONMENTAL FACTORS OF RURAL PEOPLE IN RURAL ENVIRONMENTS AND COMPOUNDS AND ISSUES THEY DEAL WITH, EVEN APPROACHING CULTURAL DIFFERENCES WE HAVE IN THE POPULATIONS WE SUPPORT. SHE PROVIDES GOOD NEWS IN THE FACT THAT DESPITE STRESS ON CAREGIVER THERE'S ROOM FOR POSITIVE SPIRAL WHERE YOU CAN ACTUALLY IMPACT DEPRESSION AND PROVIDE SOME GOOD FEEDBACK AND SUPPORT FOR THEM AND SHE LEFT US WITH THE NOTION OF -- THAT THE CAREGIVERS TRANSITION TO PATIENTS THEMSELVES IN SOME WAYS. DR. WOLFF BROUGHT UP THE NUMBER OF HOURS THAT PEOPLE HAVE TO DEDICATE TO CAREGIVERRING AND THE BURDEN AND HOW PEOPLE THAT ARE MOST NEED OF DOING CAREGIVING ARE PROBABLY THE ONES WITH THE LEAST SUPPORT. TALK EMOTIONAL PHYSICAL AND FINANCIAL BURDEN AND THE FACT THOSE THAT HAVE THE MOST NEEDS AREN'T NECESSARILY THE ONE WHOSE ARE CONNECTING TO AVENUES OF PROVIDING CARE AND SUPPORT. SHE TALKED ABOUT UNIQUE ROLES IN HAVING PEOPLE DEALING WITH THE HEALTHCARE SYSTEM TRYING TO BE ADVOCATES FOR THEIR FAMILY, THEIR PATIENTS, ESPECIALLY COGNITIVE CONDITION. SOMETIMES BEING ADVOCATE UNFORTUNATELY THE SYSTEM PUSHES YOU INTO BEING AN ADVERSARIAL ROLE TRYING TO GET SUPPORT YOU NEED. DISCUSSING OPPORTUNITIES WITH INCREASE THE NEED FOR INCREASING COMMUNICATION. FOR MAKING THAT COMMUNICATION MORE PRODUCTIVE AND PROVIDING DIFFERENT WAYS OF PEOPLE ACCESS TO INFORMATION AND SHE PROVIDED SOME CHANGES IN DEMOGRAPHIC DATA OVER THE LAST COUPLE OF DECADES THAT ACTUALLY ARE ENCOURAGING NEWS. SHE FINISHED OFF MAKING RECOMMENDATIONS ABOUT TEAM BASED AND MORE COMPREHENSIVE SUPPORT FOR CAREGIVERS. FINALLY, DR. SLOANE TALKED ABOUT UNIQUE ISSUES IN THE REALM OF SUPPORTING PATIENTS WITH DEMENTIA. THE IDEA OF HAVING FOCUSING ON ORGAN SPECIFIC ISSUES VERSUS BROADER BEHAVIORAL ISSUES AND BEHAVIORAL ISSUES ACTIVE OR PASSIVE. THE IMPORTANCE OF HAVING A FAMILY UNDERSTAND WHAT IS HAPPENING IN DEMEMBER SHAH AND WAYS TO SUPPORT THEIR LOVED ONES. THE STRATEGIES NEEDED FOR THAT TO HELP THE FAMILY MANAGE AND SUPPORT THEIR PATIENTS AND EMPOWER THEM ADS CAREGIVERS. HE TALKED ABOUT WAYS TO WORK WITHIN THE HEALTHCARE SYSTEM. AND A WEBSITE THAT GIVES HEALTHCARE PROVIDERS MORE CONFIDENCE IN WHAT THEY'RE DOING. THOUGH INTERESTING TO PUSH THAT AND SAY WHAT IS THE ACTIVE INGREDIENT IN THE WEBSITE, FOR SOME PEOPLE WHO MAY NOT HAVE ACCESS TO WEBSITE OTHER MODES OF LEARNING, A BOOK MIGHT BE A USEFUL RESOURCE AND DISCUSS A BOOK THEY PUT OUT INVALUABLE SUPPORT FOR THAT IMMUNITY. AND HE FINISHED BY TALKING ABOUT SYMPTOM BASED SUPPORTS AND VERY PRAGMATIC WAY TO SUPPORT CAREGIVERS THOUGH THE LANGUAGE HOW YOU DEFINE THOSE ISSUES IS STILL A KEY HAVING CAREGIVERS BE AWARE OF CHANGE IN STATUS AND UNDERSTANDING THE HETEROGENEITY OF CONDITIONS THEY DEAL WITH. WITH THAT BRIEF SUMMARY, I HAVEN'T QUITE GIVEN TALKS JUSTICE BUT I WANTED TO PUT THAT AS A START AND WE WELCOME QUESTIONS FROM THE AUDIENCE. >> I'M DENISE BROWN CAREGIVING.COM. DR. WOLFF SOMETHING YOU MENTIONED TRIGGERED A THOUGHT IN MY HEAD. SO WE HAVE BEEN TRYING TO FIGURE OUT HOW DO WE MAKE FAMILY CAREGIVERS PART OF THE HEALTHCARE SYSTEM SO A FEW YEARS AGO ONE OF MY MEMBERS ON MY WEBSITE DESIGNED BADGES THAT INDICATE WHO HAD THE FAMILY CAREGIVER WAS, WE WOULD WEAR IT AS FAMILY CAREGIVERS, IT INDICATED WHO WE CARED FOR SO THE MEMBERS PRINT IT OUT AND WEAR TO DOCTORS APPOINTMENTS AND ONE, LARRY, WHO CARED FOR HIS MOM WORE IT TO THE DOCTOR APPOINTMENT AND THE DOCTOR OFFICE MADE HIM TAKE IT OFF BECAUSE THEY SAID IT VIOLATED HIPAA. DOES THAT -- ISN'T THAT -- SO HERE IS MY BIG THOUGHT. WHAT IF THERE WAS A RESEARCH PROJECT THAT LOOKED AT WHAT HAPPENS IF A FAMILY CAREGIVER IS GIVEN A LAB COAT LIKE A DOCTOR WEARS,NA HAS A BADGE ON THE ARM THAT SAYS FAMILY CAREGIVER HAS THE NAME AND THAT'S WHAT THEY WEAR TO DOCTOR OFFICES TO APPOINTMENTS, TO THE ER, TO HOSPITALIZATIONS AND THAT AUTOMATICALLY PUTS THEM ON THE CARE TEAM. WE WONDERED IF ANYBODY THOUGHT THAT WAS WORTH PURSUING. THANK YOU. >> I WILL DO MY BEST TO DO YOUR PROVOCATIVE QUESTION JUSTICE. I THINK THE ISSUE OF AFFORDING FAMILIES LEGITIMITE ROLE IN THE SYSTEM IS IS A INCREDIBLY IMPORTANT ISSUE. ONE CHALLENGE DISCUSSED YESTERDAY RELATES TO THE TERMINOLOGY OF FAMILY CAREGIVING AND ALSO ABILITY FOR INDIVIDUALS AND DESIRE TO SELF-IDENTIFY THIS COULD BE ON CAREGIVER SIDE AS WELL AS PATIENT SIDE. I THINK YOUR IDEA CERTAINLY IS INTERESTING AND MERIT CONSIDERATION BUT I THINK THAT THERE ARE SOME PRAGMATIC CHALLENGES. THERE ARE OARS APPROACHES THAT COULD BE STUDIED INCLUDING ABILITY TO INCLUDE STRUCTURED FIELD IN THE ELECTRONIC HEALTH RECORD TO HEALTHCARE PROFESSIONALS TO REPORT IDENTITY OF FAMILY CAREGIVER OR AS I ALLUDED TO IN MY TALK ABILITY OF PATIENTS TO IDENTIFY NOT NECESSARILY A FAMILY CAREGIVER BUT THE FAMILY MEMBERS AND FRIENDS, CAN BE MANY PEOPLE, THEY WANT TO HAVE ACCESS TO ELECTRONIC HEALTH INFORMATION GIVING THOSE PEOPLE THE ABILITY TO ELECTRONICALLY INTERACT WITH CLINICIANS AND BE ABLE TO ACCESS INFORMATION THEY NEED. WE TALKED ABOUT -- SUSAN RYANHART TALKED ABOUT THE CARE ACT THAT'S ANOTHER APPROACH FOCUS ON IDENTIFYING FAMILY CAREGIVERS. I THINK THERE ARE PROBABLY IS NO SILVER BULLET. THE REALITY IS WE PROBABLY NEED A RANGE OF STRATEGIES INCLUDING ADVANCED CARE PLANNING, PERHAPS INCLUDING BADGES AND LAB COATS BUT I THINK THAT CERTAINLY WE CAN DO FAR BETTER THAN WE ARE DOING NOW. >> SO THIS IS A LITTLE BIT OF A BROAD QUESTION BUT I'LL NARROW DOWN TO DR. MOSER. A LOT OF THE CONVERSATION THE LAST TWO DAYS HAS BEEN AROUND THE STRAIN AND STRESS THAT COMES WITH CAREGIVING. AND YET BOTH CARE AND GIVING HAVE A LOT OF POSITIVE CONNOTATION AND PEOPLE ARE MOTIVATED BY LOVE AND AFFECTION AND RESPONSIBILITY AND A LOT OF DIFFERENT -- OTHER KIND OF POSITIVE ASPECTS. PEOPLE DO GET REPETITIVE VALUE MAINTAINING THOSE CARING RELATIONSHIPS. I WAS ESPECIALLY THINKING THE CARDIOVASCULAR DISEASE POPULATION THERE IS EVIDENCE WHEREAS OFF COURSE DEPRESSION IS A HUGE RISK FACTOR BUT ALSO OPTIMISM, SHOWN TO HAVE CARDIO PRODUCTIVE FACTORS. HOW DO YOU INCORPORATE THOSE POSITIVE PIECES AND AMPLIFY THE POSITIVE PIECES OF CAREGIVING IN THAT CONTEXT SO THAT PEOPLE DON'T START GETTING THE MESSAGE WHAT THEY'RE DOING IS JUST AN EXHAUSTING NEGATIVE EXPERIENCE WHICH IS NOT HOW THEY MIGHT EXPERIENCE IT? >> GREAT POINT. ACTUALLY ONE THAT I'M OFTEN ASKED, EVERYBODY CONCENTRATES ON THE NEGATIVE SIDE, WHAT ABOUT THE POSITIVE SIDE. WE ACTUALLY INCLUDE THE BENEFITS OF CAREGIVING AS ONE OF THE FIRST THINGS WE DO. SO WE TALK ABOUT SELF-CARE FOR THE INDIVIDUAL, BUT WE THEN TALK ABOUT ISSUES SURROUNDING CAREGIVING AND ESPECIALLY THE POSITIVE BENEFITS FOR THE PATIENT, POSITIVE BENEFITS FOR THE PERSON AND WE ENGAGE IN INDIVIDUAL CONVERSATIONS ABOUT WHAT PEOPLE VIEW AS THE POSITIVES AND BEFORE WE EVER TALK ABOUT THE NEGATIVES. AND POTENTIAL NEGATIVES AND WE LEAVE THAT TO PEOPLE TO BRING UP, WE HAVE A SECTION ON SPECIFICALLY ON DEPRESSION BUT IT'S FOCUSED TOWARD THINGS THAT COGNITIVE BEHAVIORAL THERAPY MORE ABOUT REALIGNING WHAT YOU THINK MORE WITH THE REALITY MORE ACCEPTING MORE OPTIMISTIC. EMBEDDED WITHIN THE CONTEXT OF ALL THAT WE DO IS TRYING TO GET OUT THE BENEFITS AND EXCLUDE BARRIERS OR GIVE PEOPLE WAYS TO DEAL WITH THE BARRIERS. GREAT POINT. >> HI. THANK YOU FOR A GREAT TALK. MY NAME IS >> GIZELLE, MASSACHUSETTS GENERAL HOSPITAL, I'M A DEVELOPER RESEARCHER THERE. QUESTION FOR THE GROUP. THERE WAS TALK ABOUT CAREGIVER WHO BECOMES THE PATIENT, I WAS WONDERING IF YOU COULD SPEAK TO CAREGIVERS DIAGNOSED WITH TA DIAGNOSIS AND MANAGING AT THE SAME TIME MANAGING PERHAPS A CHILD WITH SMI OR A PARENT WITH DEMENTIA FOR INSTANCE. HOW WERE NEEDS AND CHALLENGING DIFFER AND WHAT RESOURCES, HOW DO YOU APPROACH THAT CONFLICT? >> THANK YOU. >> WE HAVE SEEN THAT JUST IN THE STUDY I TALKED ABOUT JUST BEGINNING, WE HAVE SEEN THAT ALREADY IN THAT THE HUGE NUMBER OF COMORBIDITIES WITH THE CAREGIVERS, AND I THINK WE NEED TO AS A HEALTHCARE SYSTEM AND WITH POLICY REFER BACK TO ASSESSING FAMILY OUTAND NOT JUST THE PATIENT WITHOUT CAREGIVER. WE HAVE SEEN MANY PROBLEMS THE CAREGIVERS ISSUES ARE UNADDRESSED BUT AS PART OF ANY INITIATIVE LIKE THE CARE INITIATIVE, NEEDS TO BE INVOLVED, SOME ASSESSMENT OF CAREGIVER TO TAKE CARE OF SOMEONE INCLUDING THEMSELVES. SO WE HAVE SELF-IDENTIFIED CAREGIVERS WHO REALLY ARE TEETERING ON THE EDGE. AND CAN BARELY TAKE CARE OF THEMSELVES. IT'S SORT OF TRAGIC. SO THERE HAS TO BE A METHOD OF ASSESSING THE CAPABILITY OF THE CAREGIVER TO BE ABLE TO INCLUDE -- BE ABLE TO TAKE CARE OF BOTH UNITS IN THE DYAD. THAT'S ONE THING WE'RE WORK, ON WITH REGARD TO THE SORT OF ASSESSMENTS THAT WE DO. >> THE OTHER THING TO ADD TO THAT, IS THAT WHEN YOU DEAL WITH HEALTHCARE OF OLDER PERSONS WITH SAY SPOUSES WHO WERE CAREGIVERS OLDER PERSONS WHO WERE CAREGIVERS THAT'S ALWAYS THE WAY IT IS. THEY'RE NEVER HEALTHY WITHOUT THEIR OWN ISSUES. THIS PROBABLY TRUE AT ANY AGE TELL YOU THE TRUTH. ANOTHER THING I WOULD ADD IS THAT FORTUNATELY MOST CAREGIVERS ARE NOT ISOLATED, THEY'RE PART OF A SYSTEM, THEY HAVE SIBLINGS, THEY HAVE CHILDREN, OTHERS WHO CAN HELP. AND SOMETIMES ONE THING THAT WE CAN DO INTERVENTION WISE IS GIVE PERMISSION AND HELP THEM ASK FOR THAT ASSISTANCE BECAUSE OFTEN THEY WON'T DO THAT. >> I WANT TO CHIME IN AND AGREE WITH BOTH OF THESE POINTS, AND ALSO SAY AS WE'RE DEVELOPING INTERVENTIONS, IT'S NOT JUST INTERVENTIONS THAT TARGET THE INDIVIDUAL PERSON FAMILY UNIT THAT WE ALSO NEED TO BE DEVELOPING BROADER APPROACHES LIKE THE INTERVENTION WE JUST HEARD AS WELL AS ADDITIONAL RESOURCES TO SUPPORT HEALTHCARE PROFESSIONALS BECAUSE WE EXPECT AN AWFUL LOT OF THE PRIMARY CARE SYSTEM AND WHEN PRIMARY CARE PHYSICIANS ENCOUNTER OLDER SPOUSAL DYADS WHICH ARE -- WHERE THERE ARE CLEARLY UNSAFE CONDITIONS, THEY OFTEN DON'T HAVE THE APPROPRIATE RESOURCES TO BE ABLE TO MAKE WARM REFERRALS TO THE COMMUNITY AND KNOW THAT THEY'RE GOING TO BE OKAY. >> HI. MY NAME IS MELISSA WILLIAMS, I'M WITH THE NATIONAL PATIENT ADVOCATE FOUNDATION. AND I THINK I CAN SPEAK MANY IN THIS ROOM WOULD AGREE THAT THE BEST PATIENT ADVOCATES ARE OFTEN CAREGIVERS. THEY DON'T OFTEN TAKE THE TIME TO ADVOCATE FOR THEMSELVES. SO THIS QUESTION IS FOR THE GROUP. IT SEEMS A LOT OF THE CENTRAL THEME I HAVE BEEN HEARING THE PAST TWO DAYS IS AROUND THE CAREGIVER BEING PART OF THE HEALTHCARE TEAM, AS WELL AS IMPORTANCE OF COMMUNICATION, SO I'M WONDERING WHY THEY HEARD DISCUSSION AND NOT A RECOMMENDATION YET IMPROVING ACCESS TO OR AWARENESS OF PALLIATIVE CARE SERVICES. IT'S TEAM BASED CARE AND INCLUDES SPECIALTY TRAINED DOCTORS NURSES SOCIAL WORKERS, CHAPLAINS. TO ME IT SEEMS IT WOULD BE THE PERSON OR FAMILY CENTERED SOLUTION THAT WOULD ADDRESS A LOFT THE CAREGIVER BURDEN SO I WAS WONDERING IF YOU CAN ADDRESS THAT. THANK YOU. >> THROUGHOUT MEDICINE THERE'S MORE EMPHASIS ON TEAM RATHER THAN INDIVIDUAL PROVIDERS. THE CHALLENGE IS REALLY THE FINANCIAL MODELS DON'T SUPPORT THAT VERY MUCH YET. SO IT'S EASIER TO HAVE A PALLIATIVE CARE TEAM IN HOSPITAL SETTING OVER THE CHRONIC ILLNESS LIKE CANCER BUT WITH MANY OTHER DISEASES LIKE DEMENTIA, IT'S MUCH HARDER. VERY HELPFUL, I THINK THE WHOLE IDEA THAT CONCEPT OF HOSPICE AND THE VERY STRICT REQUIREMENTS FOR ENTRY INTO HOSPICE MADE IT DIFFICULT FOR PEOPLE TO UNDERSTAND PALLIATIVE CARE EMBRACES ALL CARE. >> INTERESTING CONCEPT BECAUSE IN HEART DISEASE AND ESPECIALLY HEART FAILURE, AS YOU PROBABLY KNOW, THERE'S AN INCREASED INTEREST IN INTRODUCING PATIENTS WITH HEART FAILURE EARLY ON TO PALLIATIVE CARE BECAUSE THEY'RE SYMPTOMATIC THEIR ENTIRE LIFE, THEY HAVE A SHORTENED SURVIVAL, IF YOU GET LV ACTIOND REALLY DO THOUGH CONSIDERED LIFE SAVING. YET THERE'S STILL REMAINING THIS RETICENCE TO REFER PEOPLE, WE FIND THAT CARDIAC PATIENTS GET REFERRED TEN MINUTES BEFORE THEY DIE TO PALLIATIVE CARE. AND IT'S A RETICENCE BASED ON THOSE OLD ISSUES OF TAKING AWAY HOPE AND IT'S -- SO WE NEED TO REFRAME HOW WE TALK TO PEOPLE ABOUT PALLIATIVE CARE AS SYMPTOM RELIEVING. AS HELPING YOU ALONG, NOT AS YOU'RE ABOUT TO DIE ANY SECOND. SO HERE, HAVE THIS. VERY GOOD POINT. >> HI, MY NAME IS ILIA MULLER, I'M NURSE RESEARCHER. MOST RECENTLY THOUGH, I HAVE BEEN VOLUNTEERING MY CARE TO ALZHEIMER'S AND DEMENTIA PATIENTS, THUS MY QUESTION IS FOR DR. SLOANE SPECIFICALLY BUT CAN BE ACROSS THE SPECTRUM OBVIOUSLY. WHAT ARE THE BEST ORIGINS OF RESEARCH FOR CAREGIVING SUPPORT IN MAYBE THE INVISIBLE WAYS SUCH AS MAKING A PHONE CALL, ESPECIALLY FOR DEMENTIA PATIENTS, OBVIOUSLY WE FOCUS ON THE COGNITIVE AND MAYBE THE PHYSICAL NEEDS BUT CAREGIVERS NEED SUPPORT IN SMALLER WAYS TOO, JUST A PHONE CALL, GOING FOR ICE CREAM, JUST CERTAIN AREAS THAT CAN RELIEVE THE CAREGIVER, GIVE THEM A LITTLE RESPITE, BUT AREN'T NECESSARILY IDENTIFIED SPECIFICALLY FOR ALZHEIMER'S PATIENTS. >> HOW MANY HOURS DO YOU HAVE? >> I REALIZE THAT'S A BROAD QUESTION BUT SOME OF THE FAMILIES DON'T NECESSARILY QUALIFY FOR VOLUNTEER SERVICES AND PAID SERVICES ARE A LITTLE BIT MUCH FOR KIND OF THE UNIDENTIFIED SMALLER IF YOU WILL AREAS. >> YOU FRAME THE ISSUE VERY WELL. ANY SOLUTION WOULD HAVE TO BE SPECIFICALLY INDIVIDUAL CASE, DEPENDS ON WOULD IT BE FAMILY, WOULD IT BE SOME INFORMAL SUPPORT, FAMILIES IN GENERAL WILL RELUCTANT TO SPEND MONEY ON CAREGIVER SUPPORT UNTIL THEY QUALIFY FOR NURSING HOME WHICH IS COUNTER PRODUCTIVE FOR THINGS WE WANT TO DO. THERE'S OVER A HUNDRED EXPERTS IN THIS ROOM SO I INVITE OTHERS, AT LEAST OTHER THAN THE PANEL TO COMMENT. THIS IS A VERY TOUGH BUT NO FORMULAS. >> HELLO, THANK YOU FOR INFORMATIVE THOUGHT PROVOKING PRESENTATION THE PAST FEW DAYS. MY NAME IS BETTY, I WORK FOR HOLLY CROSS HEALTH IN SILVER SPRING IN THEIR FAITH COMMUNITY NURSE PROGRAM AS COORDINATOR. AND ONE OF OUR OBJECTIVES IS TO HELP SUPPORT CONGREGATIONS IN PROMOTING HEALTH WITHIN THEIR MEMBERS. BUT MORE SPECIFICALLY MY QUESTION HERE TODAY IS BASED ON ALL OF YOUR RESEARCH AND YOUR FINDINGS AND THE FACT THAT THE CARE HAS MOVED OUT OF THE HOSPITAL AND INTO THE HOME SOMETIMES ICU LEVEL CARE AT HOME HAS THERE BEEN ALSO ANY -- HAS YOUR RESEARCH PROVOKED ANY MOVEMENT IN POLICY TO GET THE PROFESSIONALS OUT OF THE HOSPITAL AND INTO THE HOME ON A PAID BASIS. NOT ONLY THAT BUT TO GET THE LESS SOPHISTICATED MAYBE NOT RN BASED CARE BUT THE CNA LEVEL BASED CARE ON A PAID, ON A COMPENSATED ARRANGEMENT IN THE HOME. AT THIS POINT, ALL IN HOME CARE IS WITH THE EXCEPTION OF HOSPICE , IS SELF-PAY AND NOT COVERED BY ANY INSURANCE. SO AS ACCESS TO CARE ISSUE, IT COMES DOWN TO THE ABILITY OF THE FAMILY TO SELF-HIRE. AND I WANT TO KNOW IF YOU'RE RESEARCH WILL HELP PUSH POLICIES TO GET THOSE KIND OF IN HOME SERVICES COMPENSATED AS THEY ARE IN OUR NURSING HOME SUBACUTE SETTINGS AND HOSPITAL SETTINGS. >> THANK YOU FOR YOUR TERRIFIC QUESTION. YOUR QUESTION HITS ON THE ELEPHANT IN THE ROOM IN TERMS OF UNFUNDED CARE RELATED TO LONG TERM SERVICE AND SUPPORT. YOU ARE ABSOLUTELY RIGHT WITH THE EXCEPTION OF MEDICAID AND FEW LESS THAN 10% INDIVIDUALS PRIVATE CARE FROM INSURANCE LARGELY HOME BASED CARE IS PAID OUT OF POCKET. I WOULD SAY THIS IS A DIFFICULT LONG STANDING ISSUE GONE DECADES WITHOUT A SOLUTION. THERE WAS THE CLASS ACT WHICH WAS PART OF THE AFFORDABLE CARE ACT. AND DIDN'T COME INTO BEING. I WOULD SAY THERE IS SOME REASON FOR OPTIMISM SEEING A SHIFT THE WAY CARE IS PAID MOVING FROM FEE FOR SERVICE CARE TOWARDS MORE EPISODIC OR BUNDLED CARE. THAT SETS INCENTIVE FOR PROVIDERS TO TAKE A HOLISTIC APPROACH SO THE EXTENT YOU CAN PROVE THAT DELIVER -- MEETING INDIVIDUALS NEEDS IN THE COMMUNITY BY SENDING CNAs OUT WILL KEEP THEM OUT OF THE HOSPITAL. THEN YOU CAN SET UP ARGUMENT FOR THAT KIND OF CARE BUT IT'S -- THERE'S AS WE HEARD YESTERDAY, THERE'S A LOT OF -- THERE ARE CHALLENGES IN THAT FAMILIES WILL DO WHAT THEY NEED TO DO TO KEEP THEIR -- TO BE ABLE TO KEEP A LOVED ONE AT HOME. SO SORT OF SETTING UP THE APPROPRIATE SUPPORTS TO WRAP AROUND FAMILY IS A DIFFICULT POLICY ARGUMENT TO MAKE. >> IN TERMS OF DEVELOPING RESEARCH AGENDA, MIGHT BE A CALL FOR MORE HEALTH ECONOMISTS IN THE DISCUSSION AS WELL BECAUSE OBVIOUSLY HAS A BENCH MAKING IT CLEAR TO THE POLICY MAKERS IMPACT AND OUTCOMES OF THOSE. >> I WOULD LIKE TO SEE THE OTHER SIDE OF THE ARGUMENT THOUGH, THAT IS COST EFFECTIVENESS IS NOT ALWAYS THE BEST ROUTE TO QUALITY. IN FACT, TOO MUCH EMPHASIS ON COST EFFECTIVENESS WILL DRIVE PEOPLE AWAY FROM SOLUTIONS THAT PEOPLE WANT BUT WILL AVOID IF THEY HAVE TO PAY FOR THEM. >> THANK YOU. I'M CONNIE SISCOWSKI FROM THE AMERICAN CAREGIVING ASSOCIATION OF CARE GIVING YOUTH. THANK YOU FOR YOUR FOCUS ON MOVING TOWARDS FAMILY CENTERED CARE. I WOULD LIKE TO COMMENT WE HAVE HEARD A LOT ABOUT PEOPLE AGING AND THOSE NEEDS BUT ALSO NOT A LOT ABOUT OUR HOUSEHOLDS CHANGING. AND TODAY HOW MANY MORE GRANDPARENTS ARE RAISING GRANDCHILDREN WHO ARE INCLUDED UNDER TITLE 3E FOR THE NATIONAL FAMILY CAREGIVER SUPPORT PROGRAM. BUT THEN THERE'S I THINK ABOUT WHAT HAPPENS WHEN THE GRANDPARENTS GET SICK. AND THE CHILDREN WIND UP CARING FOR THEM. SO THE ONLY NATIONAL SURVEY REGARDING CHILDREN AS CAREGIVERS, THOSE AGES 8 TO 18, WAS RELEASED IN 2005. SO THAT'S MORE THAN A DECADE OLD. YET A LOT OF RESEARCH HAS BEEN ON CAREGIVERS AND SO LET'S THINK WHAT ABOUT CHILDREN AND HOW CAN WE BE MORE EFFECTIVE IN DOING RESEARCH. AND RAISING LEVEL OF AWARENESS ABOUT THE ROLE OF THESE CHILDREN AND HOW PERHAPS THEIR SCHOOL IS EQUIVALENT TO WORKPLACE OF EMPLOYED FAMILY CAREGIVER. >> THANK YOU FOR YOUR VERY IMPORTANT QUESTION. DR. SLOANE AND I WERE COMMISERATING ON THE DIFFICULTY OF BEING ABLE TO ACTUALLY FIELD A SURVEY TO YOUNG ADULTS. BUT I THINK THAT YOUR IDEA OF TRYING TO REALLY UNCOVER THE CHALLENGES FOR YOUNG ADULTS TRYING TO BUILD THEIR LIVES AND HOW CAREGIVING MAY EFFECT THEM IS A VERY IMPORTANT ISSUE AND MERITORIOUS OF ADUGSAL WORK. >> WE DID A STUDY IN ASSISTED LIVING WHERE NURSING ASSISTANTS AND THE CAREGIVERS THERE IRB, THERE MIGHT BE SOMEBODY UNDER 18. YOU HAVE TO GET THE PARENT TO SIGN FOR THEM. IT GETS COMPLICATED. WHEN YOU'RE ENROLLING UNDERAGE CHILDREN AS SUBJECTS FOR SOMETHING LIKE THIS. NOT IMPOSSIBLE BUT MAYBE A BARRIER. >> SHOUT OUT AND WE'LL REPEAT IT. >> MAGIC. I'M MARY ANN STERLING, FAMILY CAREGIVER ADVOCATE AND ALSO ON THE ADVISORY COUNCIL FOR THE ALZHEIMERS PATIENT RESEARCH NETWORK FUNDED BY PCORI. MY HUSBAND AND I STRUGGLED BETTER THAN 20 YEARS NOW WITH THROUGH OF FOUR PARENT WHOSE HAVE ALZHEIMER'S OR OTHER FORM OF DEMENTIA. THREE OUT OF FOUR PARENTS ARE EXPERIENCE -- OUR EXPERIENCE HAS BEEN ANYTHING BUT POSITIVE. NOT ONLY PROVIDING CARE AND DEALING WITH OUR PARENTS BUT ALSO DEALING WITH THE HEALTHCARE AND SOCIAL SERVICES SYSTEMS. I HAVE INDEED BEEN AN EXTREMELY ISOLATED ADULT DAUGHTER AND THERE'S MILLIONS MORE LIKE ME IN THIS COUNTRY. MY QUESTION FOR YOU ALL NOW OVER THE PAST TWO DAYS WE HAVE HEARD SOME INTERVENTIONS THAT HOLD PROMISE. FOR FAMILY CAREGIVERS BUT WHAT I DON'T HEAR IS ANYBODY TALKING ABOUT HOW WE'RE GOING TO TRANSLATE THAT INTO THE MILLIONS OF HOMES THAT NEED THEM SO YOUR THOUGHTS WOULD BE VERY APPRECIATED. >> SO THANK YOU FOR YOUR REMARKS WHICH ARE WELL-FOUNDED AND EXTREMELY IMPORTANT. YOU'RE ABSOLUTELY RIGHT. THERE'S BEEN DECADES OF RESEARCH THAT HAS BEEN SUCCESSFUL IN DEVELOPING EVIDENCE BASED INTERVENTIONS THROUGH RANDOMIZED CONTROL TRIALS THAT HAVE BEEN PROVEN TO BE EFFECTIVE. THERE'S A GIANT GAP BETWEEN EVIDENCE DEVELOPED AND ARE SOURCES AND SERVICES AVAILABLE IN THE COMMUNITY. IT'S A REAL CHALLENGE FOR A RANGE OF ISSUES INCLUDING ISSUES RELATED TO THE ORGANIZATION AND FINANCING OF CARE DELIVERY AS WELL AS THE WAY WE GO ABOUT RESEARCH. WE DISCUSSED SOME THE LAST TWO DAYS. I THINK IF YOU'RE PART OF PCORI, THAT'S DOING RESEARCH IN A DIFFERENT WAY. THERE'S A GROWING RECOGNITION OF THE IMPORTANCE OF IMPLEMENTATION SCIENCE, DR. VAN HELP TALKED ABOUT THAT YESTERDAY AND IMPORTANCE IF WE'RE GOING TO TO BE WORKING AND DEVELOPING SYSTEM INTERVENTIONS TO IDENTIFY INDIVIDUALS IN CARE DELIVERY WHICH MAKES SENSE BECAUSE THAT'S WHERE PEOPLE RECEIVE CARE. THAT'S WHERE A CARE PLAN IS DEVELOPED. THESE FAMILIES ARE THERE, THEY ARE FACILITATING INTERACTIONS, NOT SAYING THAT'S THE POINT OF CONTACT WHERE THE INTERVENTION SHOULD BE PROVIDED BUT THEY -- THERE IS A CERTAINLY A -- THEY ARE IN THE FIELD AND THOSE PROFESSIONALS IN THE CARE DELIVERY LOVE REFERRALS AND LOVE TO BE ABLE TO MAKE A HOT HAND OFF TO COMMUNITY BASED ORGANIZATION ON THE RECEIVING END POISED TO DELIVER SERVICES TO MEET NEEDS OF FAMILY CAREGIVERS. RIGHT NOW THERE'S GAP SO THERE'S MULTIPLE PIECES, WE NEED THE EVIDENCE, BUT ALSO FINANCING AND WORK FORCE CAPACITY TO BE ABLE TO MEET NEEDS OF CAREGIVERS IN THE COMMUNITY. >> TWO BARRIERS TO THAT WE STRUGGLE WITH. ONE IS THAT RESEARCH LOOSES FUNDING, OFTEN WHATEVER IT IS DISAPPEARS. EVEN WITH WEBSITE WE STRUGGLE HOW TO MAINTAIN WHEN THE FUNDING RUNS OUT. IT'S A SIMPLE THING. THAT'S A REASON THE BOOK THE WAY IT'S MORE SUSTAINABILITY. THE OTHER THING ABOUT IT IS -- I FORGET WHAT I WAS GOING TO SAY. CASE AND POINT. >> I'M MARY BETH HAPP FROM THE OHIO STATE UNIVERSITY. AGAIN, THANK YOU FOR THIS EXTRAORDINARY TWO DAYS AND THIS PANEL RIGHT NOW. I WANTED TO FOLLOW-UP WITH A COMMENT ON THE EARLIER DISCUSSION ABOUT POLICY AND THE NEED FOR PAID CARE PROVIDERS IN THE HOME. THERE WAS THIS NOTION HOSPICE IS AN EXCLUSION, THIS IDEA THAT HOSPICE GETS MORE CARE PROVISION IN THE HOME. AND I JUST LIKE TO KIND OF CHALLENGE THAT AND SAY HOSPICE FAMILY CAREGIVERS RECEIVE NURSE VISITS, THREE TIMES A WEEK FOR 40 MINUTES TO AN HOUR. AND MAY RECEIVE CERTIFIED NURSE AIDS. NURSE AIDS FOR ONE HOUR MAXIMUM THREE TIMES A WEEK. THE REST IS LEFT TO FAMILY CAREGIVERS. WHO MAYBE AS WE SET ONE PERSON OR MORE THAN ONE PERSON AND THE PRECARETY IN ALL THAT. IS STARTLING. >> I SPENT FIVE YEARS IN A PACE PROGRAM, THAT'S A WONDERFUL ORGANIZATION FOR TO SUPPORT FAMILIES OF PEOPLE WHO WOULD QUALIFY FOR NURSING HOME CARE BUT WANT TO BE MAINTAINED AT HOME. SOME OF THE SAME ISSUES ARE THERE IN TERMS OF LIMITATIONS OF RESOURCES, A THIRD OF PEOPLE COME IN TO THE PROGRAM LIVE ALONE AND JUST THINK HOW DIFFICULT IT IS IN A PROGRAM CAN AFFORD 24 HOUR CARE. SO THE ISSUES, IT JUST EMPHASIZES A ROLE OF INFORMAL SUPPORT ADS HOW CRITICAL IN SUPPORTING IT. THE OTHER THING I REMEMBERED WHICH IS THAT THE HEALTHCARE SYSTEM DOESN'T KNOW THE RESOURCES SO THEY WON'T REFER BECAUSE THEY DON'T KNOW. >> WE HAD A GREAT DISCUSSION. LAST TWO COMMENTS. WE SHOULD BE DONE. >> I'M JOSE LOOKSNEER FROM COLUMBIA UNIVERSITY IN NEW YORK. I'M A RESEARCHER. MY RESEARCH IN CAREGIVERRING SUPPORTED BY NINR PCORI, GENERAL INTERNIST, PRIMARY CARE PHYSICIAN WHO DEALS WITH A LOT OF ISSUES. SO MY COMMENT IS THE FOLLOWING. IT SEEMS TO ME ON THE SURFACE THAT A LOT OF THE CAREGIVING RESEARCH PARTICULARLY IN ALZHEIMER' DISEASE AND DEMENTIA WHERE I DO WORK IS MORE FOCUSED ON SPOUSES. AND MORE RESEARCH IN ADULT CHILDREN PARTICULARLY DAUGHTERS IS NEEDED. SO WE FIND IN OUR COMMUNITY TWO-THIRDS OF THE CAREGIVERS OF PEOPLE WITH DEMENTIA ARE DAUGHTERS. AND OF COURSE THEIR REALITIES ARE DIFFERENT, THEY HAVE JOBS, THEY HAVE THEIR OWN CHILDREN, THEY HAVE THEIR OWN PROBLEMS. WE HAVE FOUND IN A CLINICAL TRIAL THAT WE HAD COMPARING CAREGIVER INTERVENTIONS THAT THERE WAS A DEFINITE EFFECT MODIFICATION BY ADULT CHILDREN STATUS. COUNSELING INTERVENTIONS HAVE STRONGER EFFECTS IN THE SPOUSE, CAREGIVERS THAN IN THE ADULT CHILDREN SO MY GENERAL QUESTION IS, IT MAYBE PERCEPTION BUT SEEMS TO ME MORE RESEARCH IS NEEDED IN ADULT CHILDREN, I THINK THE ISSUES ARE COMPLETED DIFFERENT, THEY MAY NOT HAVE COMORBIDITIES YET BUT THEY MAY HAVE -- MAYBE IN THE PRE-CLINICAL STAGE TO COMORBIDITIES. IN TERMS OF PHYSICAL HEALTH. SO SHOULD AS PART OF THE THE AGENDA SHOULD WE LOOKING A DIFFERENT BASKET, ONE THAT LOOKS AT ALL THEIR SPOUSE CAREGIVERS. AND ONE THAT LOOKS AT YOUNGER ADULT CHILDREN CAREGIVERS. THANK YOU. >> GREAT COMMENT. THANK YOU. >> YOUR COMMENT IS WELL TAKEN AND THERE ARE SOME VERY DIFFERENT -- BIG DIFFERENCES IN RELATIONSHIP CAREGIVER TO ADULT, CERTAINLY THE OLDEST AGE GROUPS MEDICAL COMPLEXITY IS GREATEST IN OLDER ADULTS ARE MORE LIKELY TO RELY ON ADULT CHILD CAREGIVER MANAGING COMPETING DEMANDS. SO CERTAINLY I THINK IT'S IMPORTANT WE AS RESEARCHERS BE ABLE TO ASSESS VALUE OF INTERVENTIONS, EFFECTS OF INTERVENTIONS IN A RANGE OF GROUPS, INCLUDING SPOUSES BUT ALSO ADULT CHILDREN CAREGIVERS IN OTHER CIRCUMSTANCES, CAREGIVERS IN RURAL AREAS, CAREGIVERS WHO HAVE FEWER RESOURCES, IT'S YOUR COMMENT TO ME DOESN'T NECESSARILY SPEAK TO THE NEED FOR DIFFERENT INTERVENTIONS FOR ALL THOSE GROUPS. INSTEAD ATTENDING TO THE UNDERSTANDING DEVELOPING INTERVENTIONS AND STUDYING IN DIVERSE POPULATIONS AND LARGE ENOUGH SAMPLES SO WE DISCERN AFFECTS ACROSS THE RAGE OF INDIVIDUALS WHO BENEFIT FROM INTERVENTIONS SO WHEN WE DIFFUSE THE INTERVENTION WE'RE CONFIDENT WE'RE REACHING ALL THE INDIVIDUALS WHO WE WOULD EXPECT AND WANT TO BENEFIT FROM OUR WORK. >> ANOTHER POPULATIONs SPECIALLY THE POPULATION WHICH WE WORK ARE REALLY LIVING IN PERSISTENT POVERTY, GENERATIONAL POVERTY, THERE'S MANY, MANY PEOPLE WHO DEPEND ON CARE OF NEIGHBORS AND UNIDENTIFIED WHEN THEY COME INTO THE HOSPITAL, WHEN THEY GO INTO THE DOCTOR'S OFFICE, THESE COMPLETELY UNIDENTIFIED. TOTALLY INVISIBLE CARE GIVES WE NEED TO EMPHASIZE IN THAT RESEARCH. >> THAT'S WHY I SAID GREAT COMMENT. SUBGROUP ANALYSIS IS NOT ENOUGH. TO IDENTIFY WHAT HELPS INDIVIDUALS SO IN TERMS OF RESEARCH AGENDA, MAYBE SPECIFIC RESEARCH STUDIES ON THESE SUBGROUPS, MAYBE HELPFUL, MAYBE NEEDED. >> FINAL COMMENT. >> THANK YOU FOR YOUR PATIENCE. >> THANK YOU, IT WAS VERY INTERESTING TO HEAR ABOUT THE PREDELIRIUM VERSUS DEMENTIA BEHAVIORS. SO I WANT TO TOUCH ON THAT, THE OBSERVATION THAT CAREGIVERS MAYBE PICKING OUT THESE DIFFERENCES MORE ACCURATELY THAN WHAT WE DO IN INSTITUTIONS OR OTHER PLACES, IS THERE -- THERE'S ALSO SOME EVIDENCE BEHAVIORS THAT CAREGIVERS FIND TROUBLING IN DEMENTIA, FOR EXAMPLE, AGGRESSIVE BEHAVIORS, SIMILAR BEHAVIORS THAT THEY DO SEEK OUT MORE PSYCHOTROPIC MEDICATIONS, SO ON, FOR THOSE BEHAVIORS. SO I DO WONDER IF WHAT ARE YOUR THOUGHTS AND IF THAT DIFFERS BY BEHAVIOR TYPE IF IT'S A CERTAIN BEHAVIOR, PICKING UP BEHAVIOR CHANGE VERSUS DELIRIUM, HOW WE CAN TEASE THAT OUT IN FUTURE RESEARCH. >> I THINK WE HAVE TO TALK ABOUT INDIVIDUAL BEHAVIOR BECAUSE THEY'RE SO DIFFERENT. AGGRESSION IS DIFFERENT IN APATHY FOR EXAMPLE. INDIVIDUAL BEHAVIORAL BASIS THERE OOHs A LOT OF INFORMATION ABOUT MANY BEHAVIORS BUT IT'S ALL ABOUT INDIVIDUALIZING WITH DEMENTIA, IT IS. THERE'S NOTHING THAT WORKS FOR 50% OF PEOPLE WITH DEMENTIA, WHEN IT COMES TO BEHAVIORAL MANAGEMENT. >> WITH THAT, I WANT TO THANK YOU FOLKS THE ONES HERE AND THOSE LISTENING IN. WE HAD A VERY INSIGHTFUL DISCUSSION. AND THIS CONCLUDES THE PANEL ON RESEARCH FOCUSED ON CHRONIC CONDITIONS, DEMENTIA, ALTERATIONS IN COGNITION. AS MORE AND MORE PEOPLE LIVING WITH CHRONIC CONDITIONS, RESEARCH IN THIS AREA IS CERTAINLY GOING TO CONTINUE TO GROW. NOW I WANT TO TURN IT BACK TO LAURA GITLIN TO BRING US HOME. THANKS AGAIN FOR THIS CONFERENCE. [APPLAUSE] >> THANK YOU DR. NITKIN AND PANELISTS. IF THE PANELIST CONSIST GO DOWNSTAIRS FOR PICTURES. I ALSO HAVE A SERVICE ANNOUNCEMENT THAT A BRACELET WAS FOUND AND WHOEVER LOST IT CAN GO TO THE REGISTRATION OR COME UP HERE AND PICK IT UP FROM ME. SO THANK YOU, VERY MUCH FOR YOUR ATTENTION. WE HAVE HAD I THINK AN AMAZING DAY TODAY DELVING DEEP INTO THE EVIDENCE. WE HAVE LEARNED A LOT AND I CERTAINLY CAN'T REPEAT ALL THE LESSONS EXCEPT WE HAVE BEEN INTRODUCED TO NEW CONSTRUCTS. THE IMPORTANCE OF CULTURE BOTH WITHIN THE FAMILY, THE COMMUNITY, HEALTH PROFESSIONS AND HEALTH SYSTEMS. WE HAVE LEARNED NEW METHODOLOGIES, WE HAVE TALKED THEE REAR DEVELOPMENT. WE HAVE TALKED ABOUT MECHANISMS AND WE HAVE ALSO SOME OF THE RESEARCH HAS BUSTED A LOT OF MYTHS. WHAT I THOUGHT I WOULD DO OR ASKED TO DO TO GIVE REFLECTIONS OVERALL OF WHAT IS ALL THIS ABOUT, MY COMMENTS ARE BROAD STROKES AND REPRESENT HIGH LEVEL REVIEW IF YOU WILL. I WANTED TO SAY THAT WHEN YOU LOOK AT THE WEALTH AND DEPTH AND EXCELLENCE OF THE RESEARCH, I WOULD CHARACTERIZE WHERE WE ARE NOW AS A GLASS HALF FULL. IN THINKING ABOUT THAT, I WAS PRIVY TO A SLIDE PRIOR TO COMING HERE, I WAS THINKING ABOUT THEM, I THOUGHT IT WAS WORTH THINKING HISTORICALLY WHERE WE HAVE COME. MANY OF YOU MAY NOT REALIZE BUT IN THE 1960s, THERE WAS A MYTH OLDER PEOPLE, THIS HAS TO DO WITH HISTORICAL VIEW, POINT OF VIEW OF FAMILIES AND OLDER ADULTS BUT OLDER ADULTS WERE NEGLECTED NOT CARED FOR AND FAMILIES WERE TOO BUSY TAKING CARE OF YOUNG CHILDREN AND WERE NOT INVOLVED. SO FROM HISTORICAL POINT OF VIEW, THE RESEARCH STARTING IN THE 1960s, WAS EXTREMELY DEFENSIVE. AND HAD TO BE NECESSARILY DESCRIPTIVE TO DEBUNK THAT MYTH. IT TOOK OVER 25 YEARS TO DO SO. SO WE HAVE COME A VERY LONG WAY AS YOU HEARD FROM THE LAST TWO DAYS, THAT FAMILIES ARE RECOGNIZED AS KEY AND LYNCH PEN TO THE HEALTH SYSTEM THOUGH STILL REMAIN HIDDEN, THAT MYTH WE DON'T HAVE TO CONTEND WITH. I'M NOT GOING TO SPEND THE WHOLE TIME HERE ON THE HISTORY LESSON. BUT REALLY OUR WHOLE FOCUS JUST TO SHOW YOU WHERE WE HAVE COME FROM IN TERMS OF HISTORICAL SCIENTIFIC PERSPECTIVE IS THAT WE STARTED WITH THAT VERY DESCRIPTIVE MYTH BUSTING APPROACH. YET I WAS STRUCK PARTICULARLY FROM SOME OF THE QUESTIONS IN THE -- FROM THE AUDIENCE FROM THIS LAST SESSION BUT EARLIER ON, HOW WE STILL NEED TO UNDERSTAND THE CHANGING PROFILE OF FAMILIES AND WHO ARE CAREGIVERS. AND THEY ARE INDEED CHANGING. WE NEED TO CONTINUE TO HAVE RESEARCH THAT IS DESCRIPTIVE. IN TERMS OF MARCHING IN TIME 19851990 WE WERE REALLY -- 1985, 1990, WE HAVE FOCUSING NOW ON MORE EXPLANATORY MODELS TRYING TO UNDERSTAND CONSEQUENCES OF CAREGIVING AND THE CORRELATES OF CAREGIVERRING. THIS IS WHERE IN 1990, ELAINE BRODY SOME OF YOU MAY REMEMBER COINED THE TERM THE WOMAN IN THE MIDDLE. THAT STILL STANDS AND IS AN IMPORTANT CONCEPT, WE HEARD OVER AND OVER TODAY. WHAT ALSO IS INTERESTING ABOUT CHARACTERIZING CAREGIVERS IS THAT WE NOW LEARNED TODAY AND YESTERDAY IS THERE'S A CHANGING DEMOGRAPHIC AND WE NEED TO UNDERSTAND THE CHARACTERISTICS OF NEW CAREGIVERS. WOMEN REMAIN PRIMARILY IN THE FOREFRONT OF CAREGIVING BUT PARTICULARLY WITH DEMENTIA CARE GIVING THERE'S A RISING PERCENTAGE OF MEN AND NOW WE HAVE GRANDCHILDREN TEENAGERS WHO ENTERED THE CAREGIVING. SO EVEN THOUGH WE HAD A VERY RICH EXPLANATORY SET OF STUDIES OVER THE LAST 30 YEARS WE NEED TO CHARACTERIZE WHAT CAREGIVING LOOKS LIKE. WHAT'S FLU THE HISTORY, IS THE HISTORY HAS BEEN DOMINATED BY DEFICIT AND STRESS PROCESS MODEL. SO WHAT WE DO KNOW HERE OVER AND OVER AGAIN IS FROM THE LENS OF STRESS PROCESS MODEL. WE HEARD TODAY AND FROM THE COMMENTS FROM THE AUDIENCE VERY IMPORTANT POINTS LOOKING AT CARE GIVENING ITS TOTALITY. IT'S NOT BAD AND NOT GOOD. IT'S COMPLEX. MUCH MORE COMPLEX THAN WE IMAGINED. SO IN TERMS OF THINKING THROUGH AND CHARACTERIZING CAREGIVERS TODAY AND THE DIFFERENT CORRELATES OF CAREGIVING, WE HAVE TO HAVE NEW MEASURES THAT PROVIDE A MUCH MORE NUANCED UNDERSTANDING OF THIS AREA. AND IN THE RECENT I WOULD SAY 20 YEARS, MAYBE MORE, WE HAD INTERVENTIONS, RIGHT? THAT HAVE BEEN PREDICTIVE, THE BEST INTERVENTIONS OBVIOUSLY BASED IN THEORY TO HELP US UNDERSTAND AS DR. NITKIN SAID, MECHANISMS BUT YET THAT'S STILL AN AREA OF GREAT RESEARCH NEED. THE VERY FIRST WAVE OF CAREGIVER INTERVENTIONS WERE NOT EFFECTIVE. SO WE HAVE COME A LONG WAY BECAUSE YOU HEARD THROUGHOUT THE DAY REALLY POWERFUL INTERVENTIONS. THE OTHER THING THAT'S NEW ABOUT THIS PROGRESSION HERE IS THAT WHEN WE FIRST STARTED AND IF YOU THINK ABOUT THE REACH OF INTERVENTIONS SUPPORTED BY THE NATIONAL INSTITUTE ON AGING AND THE NATIONAL INSTITUTE ON NURSING RESEARCH, NOT ONCE WERE WE ASKED TO THINK ABOUT THE IMPLICATIONS OF THE DESIGN OF OUR INTERVENTIONS IN TERMS OF IMPLEMENTATION. IN TERMS OF REALLY REACHING OF PEOPLE WHO WOULD NEED IT. SO IN TERMS OF WE HAVE A HISTORY HERE, HAVING INHERITED A HOST OF REALLY FANTASTIC INTERVENTIONS THAT REMAIN WITHIN THE RESEARCH REALM AND HAVE NOT MADE IT TO THE HEALTH SYSTEM. SO WHAT'S NEW HERE AND WE HEARD TODAY IN TERMS OF PUSHING THE RESEARCH IS THAT WE HAVE TO DO INTERVENTION RESEARCH DIFFERENTLY. WE HAVE TO DRAW ON AND WE'RE LUCKY NOW TO HAVE IMPLEMENTATION SCIENCE THAT CAN GIVE US THE SCIENTIFIC THEORIES AND TOOLS TO REALLY BEGIN TO LOOK AT DEVELOPING OUR INTERVENTIONS DIFFERENTLY. INCORPORATING MORE OF A USER AND END USER PERSPECTIVE INTEGRATING STAKEHOLDERS INCLUDING HEALTH SYSTEMS IN ORDER TO ADVANCE THE SCIENCE AND SUCH A WAY INTERVENTIONS CAN END IN THE HAND OF PEOPLE WHO USE IT. I THINK THIS -- WE HAVE TO UNDERSTAND WHERE WE CAME FROM AND WHERE WE ARE GOING AND AS WE MOVE FORWARD IN TERMS OF SCIENCE, EACH OF THESE BUCKETS REMAIN VERY IMPORTANT FOR US TO PURSUE. YET THEY TAKE A TOTALLY DIFFERENT FLAVOR. THAT'S WHY I WOULD SAY THE GLASS IS HALF FULL. SO WHAT IS A LITTLE DIFFERENT NOW THAN BEFORE? WE TALKED ABOUT THIS BEFORE AND I THINK YOU HEARD THAT HEALTH SYSTEMS AND MODELS OF CARE ARE BUILT AROUND THE EXPECTATION THAN FAMILIES WILL COORDINATE AND PROVIDE ALL DIFFERENT KINDS OF CARE YET REMAIN UNRECOGNIZED. AND WHETHER IT'S WEARING A WHITE COAT OR CHANGING THE ELECTRNIC RECORDS WE'RE GOING TO HAVE TO COME UP WITH MULTIPLE SYSTEMS AND APPROACHES THAT ARE TESTED, THERE'S NOT A SINGLE MAGIC BULLET HERE. WE TALKED ABOUT THE CHANGING PROFILE OF CAREGIVERS, I WON'T GO INTO THAT MUCH BUT WHAT'S DIFFERENT IS CAREGIVERS ARE INVOLVED IN MUCH MORE COMPLEX TASK, NOT ONLY ADL AND IADL BUT MEDICAL AND NURSING CARE RESPONSIBILITY AND WHAT WAS TOUCHED UPON A LITTLE BIT BUT NOT DISCUSSED, FAMILIES ARE IN THE FOREFRONT ASSURING HAPPINESS AND QUALITY OF LIFE AND THE PERSON THEY CARE FOR IS SAFE AND SECURE IN THEIR HOME. THOSE ARE ALL OTHER JOBS IF YOU WILL AND RESPONSIBILITIES. WE TALK ABOUT THE HETEROGENEITY OF FAMILIES AND FAMILIES IN THE BROADEST SENSE OF THE TERM. THINKING ABOUT THIS UNIQUE OPPORTUNITY TO LOOK AT CAREGIVING ACROSS THE LIFE COURSE, LOOKING AT CAREGIVERRING AND HOW IT'S THE SAME AND DIFFERENT WHEN FAMILY MEMBER IS CARING FOR A CHILD OR AN OLDER ADULT, CAREGIVING, THERE'S UNIVERSAL PRINCIPLES THAT WE COULD DRAW AND THESE ARE JUST SOME THAT I THOUGHT ABOUT. FIRST OF ALL REGARDLESS WHO IS RECEIVING THE CARE, IT SEEMS HEALTH SYSTEMS AND SOCIAL SERVICE SYSTEMS ARE -- THEIR EXPECTATIONS ABOUT FAMILIES WHAT THEY CAN DO EXCEEDS -- MAY EXCEED THEIR CAPACITY AND RESOURCES. WE KNOW FOR SURE IT EXCEEDS THEIR KNOWLEDGE BASE AND WHAT INFORMATION THEY HAD AND WHAT SKILLS THEY HAVE. WE ALSO SAW -- I THINK THIS IS A UNIVERSAL PRINCIPLE THAT CUTS ACROSS CONDITIONS CARED FOR AND AGE GROUPS CARED FOR, THAT CAREGIVING INVOLVES A RANGE OF TASKS THAT CHANGE AND POSSIBLY ACCUMULATE OVER TIME, I THINK JUDY WOODRUFF'S EXPERIENCES IN STORIES SHOW HOW HER FOCUS AND CHANGE, SHE AND HER FAMILY AND HUSKER AND SO FORTH, CHANGED OVER TIME. ALSO WHAT BECAME APPARENT TO ME OVER TWO DAYS THAT THE NEEDS OF CAREGIVERS VARY. AND THEY VARY BASED ON THE STAGE IN THE LIFE COURSE THAT CAREGIVING OCCURS AND THE HEALTH OF THE CAREGIVER WHETHER EMPLOYED OR NOT, THE REGION OF THE COUNTRY THEY LIVE, WHETHER THEY HAVE ACCESS TO CARE, AND WHAT KIND OF STATE POLICIES ARE SUPPORTING THEM. THERE ARE RESOURCES FINANCIAL SOCIAL EMOTIONAL AND PHYSICAL AND NOT ONLY THE CONDITION OF THE PERSON THEY'RE CARING FOR BUT THEIR SPECIFIC NEEDS. THAT SEEMS TO BE A UNIVERSAL PRINCIPLE. THE OTHER UNIVERSAL PRINCIPLE THAT I DREW WAS REGARDLESS OF THE CONDITION OR AGE OF THE PERSON BEING CARED FOR, THAT THE PERSON WHO IS TAKING ON THE RESPONSIBILITY OF CARE NEEDS ONGOING, DIFFERENT KINDS OF SUPPORT AND EDUCATION ON ONGOING BASIS. THEY ALSO NEED AS HAS BEEN SAID, ACCESS TO EVIDENCE BASED INTERVENTION. THAT DOESN'T MEAN THAT EVERY FAMILY MEMBER WHO TAKES ON THE ROLE OF CAREGIVING NEEDS EVERYTHING. BUT WE HAVE TO BE ABLE TO IDENTIFY AND ASSESS CAPABILITIES OF FAMILIES. THAT SEEMS TO BE ALSO A UNIVERSAL PRINCIPLE. SO FAMILIES NEED TO BE RECOGNIZED IDENTIFIED AND ASSESSED IN ALL SYSTEMS OF CARE REGARDLESS OF PLACE IN THE LIFE COURSE OR WHO THEY'RE DARING FOR. -- CARING FOR. SO I WAS BEGINNING TO THINK WHETHER THERE'S SOMETHING CALLED A MINIMUM VIABLE PRODUCT HERE. THAT'S A TERM SOME MAYBE FA YELL YARR WITH FROM THE STARTUP WORLD WHERE PRODUCTS AND TECHNOLOGY AND ELSEWHERE, IS TO DEVELOP WHAT IS A MINIMUM VIABLE PRODUCT. IF WE THINK ABOUT THOSE UNIVERSALITIES AND SOME OF ALL THE KEY CAREGIVING TASKS, I DON'T THINK THESE ARE EXHAUSTIVE. WE COULD HAVE GONE TO ANOTHER SLIDE BUT THIS IS KIND OF WHAT WE HEARD THE LAST TWO DAYS. IS THERE SOMETHING WE COULD OFFER FAMILIES AS MINIMUM VIABLE PRODUCT THAT GETS INTRODUCED WHEREVER THE FAMILY INTERCEPTS WITH THE HEALTH SYSTEM OR SOCIAL SERVICE. SO IT SEEMED TO ME WE TALKED ABOUT SOME OF THE CORE COMPETENCIES THAT FAMILIES BEGIN TO NEED TO KNOW. THEY NEED TO COMMUNICATION, EMPHASIZED QUITE A BIT. PROBLEM SOLVING WAS EMPHASIS SOD QUITE A BIT. ADVOCACY WAS DISCUSSED IN INTERVENTIONS AND IN MANY COMMENTS. CONFLICT MANAGEMENT BETWEEN OTHER FAMILY MEMBERS AND BETWEEN THE PERSON THAT CAREER THEMSELVES AND PERSON THEY'RE CARING FOR AS WELL AS HEALTH PROVIDERS. COORDINATING CARE ACROSS MULTIPLE CARE SITUATIONS. AND VERY, VERY IMPORTANTLY, TAKING CARE OF THEMSELVES AND DEPENDING UPON WHERE THEY ARE AT IN THEIR LIFE COURSE POSSIBLY TAKING CARE OF OTHER FAMILY MEMBERS TOO. SO THERE SEEMS TO BE ALMOST CO-COMPANY TESSIES THAT WE COULD -- CORE COMPETENCIES. IF YOU LOOK IN DEMENTIA WHICH IS MY AREA OF WORK AND PHYSICAL FRAILTY AND CARDIOVASCULAR HEALTH AND I ALSO HEARD THIS SOMEWHAT WITH CHILDREN AS WELL, THESE MAYBE THE CORE COMPETENCIES BUT IT'S NOT JUST ABOUT COMPETENCY, IT'S ABOUT KNOWLEDGE AND SKILLS AND I WAS VERY IMPRESSED THAT A NUMBER OF SPEAKERS SHOWED THAT IT'S NOT ABOUT -- THAT WE WANT TO REDUCE DISTRESS OR UPSET, IT'S ABOUT PROVIDING FAMILIES THE INFORMATION THEY NEED AND THE SKILLS THEY NEED. SO IT'S SKILL BUILDING. WHAT DO FAMILIES NEED? THEY OBVIOUSLY NEED DIFFERENT THINGS BASED ON WHO THEY ARE CARING FOR. THEY NEED DISEASE SPECIFIC KNOWLEDGE, THEY MAY NEED TO MANAGE DIFFERENT KINDS OF MEDICATIONS AND UNDERSTAND THEIR SIDE EFFECTS OR DOSING SO FORTH. SOME BUT NOT EVERYBODY MAY NEED SKILLS IN TERMS OF HOW TO PROVIDE HANDS-ON CARE. AND AVOIDING THEIR OWN BACK PAIN AND ACHES AND SO FORTH FROM DIFFERENT KINDS OF TRANSFERRING AND TECHNIQUES SO FORTH. SO THIS IS JUST A SNAP SHOT THAT WE SEE -- THERE SEEMS TO BE CONSISTENCY AND UNIVERSALITY, AT LEAST IN THE UNITED STATES IN TERMS OF WHAT WOULD MAKE LIFE BETTER FOR FAMILIES. SO ONE OF THE THINGS I WANTED TO SAY, BEFORE -- I WANT TO TALK ABOUT THE FAMILIES BUT I WILL COME BACK TO IT'S IN THE JUST FAMILIES ALONE, IT'S ALSO A BALANCE WHAT THE HEALTH SYSTEM NEEDS, I'LL RETURN TO THAT IN MOMENT. ONE THING THAT WE HAVE LEARNED IN OUR RESEARCH WITH DEMENTIA FAMILY CAREGIVERS IS DESPITE HAVING WONDERFUL WEBSITES AVAILABLE FROM THE NIH AND ALZHEIMERS ASSOCIATION, FAMILIES ROUTINELY DO NOT HAVE THE INFORMATION THEY NEED P. BASED ON SOME RESEARCH FUNDED BY NATIONAL INSTITUTE ON FUNDING NURSING RESEARCH, WE RAN A SERIES OF FOCUS GROUPS TO DETERMINE WHAT INFORMATION FAMILIES WANTED WITH REGARD TO A VERY SPECIFIC PROBLEM THAT IS UNIVERSAL IN DEMENTIA CAREGIVING. THAT IS MANAGING BEHAVIORAL SYMPTOMS NEUROPSYCHIATRIC SYMPTOMS, DR. SLOANE TOUCHED ON THAT. ONE OF THE THINGS THAT WAS VERY EVIDENT IN ALL OF OUR FOCUS GROUPS, AND MANY OTHER TRIALS I PARTICIPATED WITH MY TEAMS, IS THAT FAMILY CAREGIVERS PARTICULARLY WHEN YOU THINK ABOUT DEMENTIA OR ANY LONG TERM CAREGIVING SITUATION, IS THEY NEED WHAT THEY -- THEY NEED THINGS AT DIFFERENT TIMES IN THE JUNCTURE IN THE TRAJECTORY OF CARE. AND THEY WANT WHAT THEY NEED IN DIFFERENT FORMATS, DR. SLOANE TALKED ABOUT THAT IN TERMS OF WEBSITE AND THEN IN A BOOK. AND WHAT THEY NEED CHANGES OVER TIME SO HOW WE RESPOND TO PROVIDING FAMILIES WHAT THEY NEED, WHEN THEY NEED IT, WHICH IS REALLY GIVING THEM THE CONTROL. OF THEIR LIFE SPACE BECAUSE THEY ARE IN CONTROL. IMPORTANTLY IN THE HOME PROVIDING CARE. VERY IMPORTANT. HERE IS WHERE I THINK SOME OF THE BENEFITS OF TECHNOLOGY RESIDE AND WE HAVE HEARD SOME OF THAT YESTERDAY AND A LITTLE BIT TODAY. I WANTED TO SHARE WITH YOU ONE TECHNOLOGY WE HAVE BEEN WORKING ON, ONLINE PROGRAM CALLED THE WE CARE ADVISOR WHICH HAS A -- FOUR SECTIONS, A PEER NAVIGATOR THAT LOOK LIKE THE CAREGIVER BASED ON THEIR RESPONSE TO NUMBER OF QUESTIONS THAT HELPS THEM GO THROUGH THE ONLINE PROGRAM. IT OPERATIONALIZES WHAT'S CALLED THE DICE APPROACH, A VERY SYSTEMATIC EVIDENCE BASED APPROACH TO IDENTIFY BEHAVIOR AND UNDERLYING CAUSES WHICH THERE IS A PRESCRIPTION, WE CALL IT PRESCRIPTION, IT PROVIDES FAMILIES WITH A RANGE OF VERY IMPORTANT TESTED STRATEGIES FOR MANAGING THAT BEHAVIOR AS WELL AS WHAT WE CALL CAREGIVER SURVIVAL GUIDE WHERE FAMILIES GO AND GET INFORMATION ABOUT THE DISEASE, ABOUT THE BRAIN PATHOLOGY OF THE DISEASE BUT ALSO RESOURCES AVAILABLE TO THEM AND ALSO INVOLVES A DAILY MESSAGING WHERE FAMILIES GET ON THEIR PHONES, IF THEY PREFER OR THROUGH EMAIL, DIFFERENT KINDS OF MESSAGES TO REMIND THEM TO TAKE CARE OF THEMSELVES, TO REMINDS THEM TO TAKE BREAK, GET RESPITE, SO FORTH. SO WE HAVE BEEN TESTING THIS KIND OF ONLINE PROGRAM AND I JUST SHARE WITH YOU THIS PARTICULAR EXAMPLE AS THE PROMISE OF TECHNOLOGY TO PROVIDE CAREGIVERS THE THINGS THEY NEED WHEN THEY NEED IT AND WHAT THEY WANT SO THE FAMILY MEMBER CAN GO THROUGH THE DICE APPROACH TO GET A WE CARE PRESCRIPTION BUT IF THEY DON'T WANT TO, THEY CAN GO TO THE CAREGIVER SURVIVAL GUIDE AND GET A WHOLE HOST OF STRATEGIES THAT THEY CAN TRY THEMSELVES. SO WE'RE GIVING THEM THE EVIDENCE AND LETTING THEM DECIDE HOW THEY WANT TO PUT IT TOGETHER. WE FOUND AFTER ONE MONTH OF CONTINUOUS USE THAT WE WERE ABLE TO IMPROVE CONFIDENCE AND WHY CONFIDENCE IS IMPORTANT, WE SAW THAT IN SOME OF THE MODELS THAT WERE SHOWN EARLIER TODAY, IT IS CONFIDENCE CHANGING THE LEVEL OF CAREGIVERS CONFIDENCE THAT LEADS TO DECLINE IN DISTRESS. HERE ARE SOME OF THE QUOTE FROM FAMILY, DAILY TIPS ARE AWESOME. I GOT THE DAILY TIPS, AMAZED I WOULD GET THEM AND SAY HOW DO I THAT KNOW I WAS STRESSED THIS VERY MOMENT. I WISH I WOULD HAVE HAD THIS A LONG TIME AGO. I LEARNED A GREAT DEAL ABOUT DEMENTIA AND THE SKILLS TO USE IN DEALING WITH BEHAVIORS, THIS IS INTERESTING. WE HAD IMPACT ON A MEDICAL DECISION MAKING JUST LIKE DR. SLOAN WAS TALKING ABOUT HIS PARTICULAR TOOL. THIS WEEK MY HUSBAND HAD A UTI IN THE WE CARE ADVISOR TO TRIGGER IN MY MIND SOMETHING WAS WRONG AND HE SHOULD SEE A DOCTOR. WE GO TO SUPPORT GROUPS BUT I SEE THE VALUE HAVING THIS DAILY, THIS ADVICE EVERY DAY IS VERY IMPORTANT. AND THE USABILITY DATA IS VERY PROMISING. AND WHY? WE DEVELOPED THIS INTERVENTION BY INVOLVING THE STAKEHOLDERS, PROVIDERS, AND FAMILY CAREGIVERS AND PEOPLE AT EARLY STAGE DEMENTIA. SO WE SEE THE TOOL HAVING GREAT PROMISE. HERE I WON'T GO THROUGH ALL THE DATA BUT BASICALLY IT'S SHOWING THAT PEOPLE OVER 50%, CLOSE TO 70% IN SOME CASES, USED ALL THE COMPONENTS OF THE PARTICULAR -- OF THE ONLINE PROGRAM, IT WAS FOUND TO BE HELPFUL, IT PROVIDED NEW WAYS TO CARE, IT WASN'T DIFFICULT TO USE AND MOST WOULD RECOMMEND IT TO OTHER FAMILY CAREGIVERS. SO THERE'S A LOT OF PROMISE. WHAT ABOUT HEALTH AND HUMAN SERVICE STUDENTS AND PROFESSIONALS IN SYSTEMS OF CARE? SO THE -- WE HAVE TO GET THE RIGHT BALANCE HERE, IT'S NOT JUST ABOUT INTERVENTIONS THAT SUPPORT FAMILIES. DESPERATELY NEEDED BUT IT'S ALSO ABOUT HOW WE THINK ABOUT CHANGING OUR EDUCATION, AND OTHERS HAVE SPOKEN ABOUT THAT. I WON'T GO INTO DETAIL. BUT HOW IS A NURSE OR A DOCTOR OR HOW IS AN OCCUPATIONAL THERAPIST OR A PHYSICAL THERAPIST? SUPPOSED TO IDENTIFY A FAMILY CAREGIVER IS THAT THAT IS EDUCATION AND SYSTEMS LEVEL QUESTION. HOW CAN A HEALTH PROVIDER IN A VERY BUSY PRIMARY CARE HOSPITAL SETTING ICU SETTING IDENTIFY AND EVALUATE THE ABILITIES OF A PARTICULAR FAMILY OR EVEN A NETWORK OF FAMILIES IN ORDER TO DETERMINE WHETHER THE PLAN DISCHARGE PLANS ARE ACCURATE OR NOT. OR GOING TO BE EFFECTIVE OR NOT. FROM THESE ARE VERY IMPORTANT QUESTIONS THAT WERE RAISED AND HAVE TO BE ANSWERED. SO I WANTED TO SAY IN CLOSING, WE'RE GOING TO HAVE TO DEVELOP INTERVENTIONS DIFFERENTLY AND I THINK THE SOCIAL ECOLOGICAL MODELS GIVES US A BASIS FOR UNDERSTANDING AND IN WAY EVERYBODY SAID THIS. THE FOCUS OF INTERVENTIONS HAVE BEEN ON THIS INNER CIRCLE, THE INTRODUCTION OF SOME KIND OF INTERVENTION, VIS-A-VIS A PERSON WITH A CONDITION OR THROUGH THE FAMILY CAREGIVER OR NOW A DIATIC AND WE TALKED ABOUT HOW THIS CIRCLE HAS TO BE EXPANDED TO OTHER FAMILY MEMBERS AGAIN DEFINED IN THE BIGGEST TERM. WE HAVE TO CONSIDER LOTS OF FACTORS HERE. FOR TAYLORRING INTERVENTIONS BUT IF WE LOSE SITES OF THIS INTERVENTION AND WHERE IT'S EMBEDDED IN NEIGHBORHOODS OR COMMUNITY BASED AGENCIES OR HEALTHCARE ORGANIZES OVER THE WORKPLACE, -- ORGANIZATIONS OVER THE WORKPLACE AND HEALTH POLICY, INTERVENTIONS WE'LL NEVER MAKE -- WILL NEVER MAKE IT INTO LIGHT. SO WE HAVE TO MOVE FORWARD WITH OUR INTERVENTIONS, IN DEVELOPING THEM IN NEW AND DIFFERENT WAYS THAT UNDERSTANDS WHERE ARE THEY PLACED IN A SOCIAL ECOLOGICAL MODEL WHERE WE DO CONSIDER PLACEMENT IN EXISTING AND FUTURE HEALTHCARE SYSTEMS SO THAT MAKES HOUR WORK AS SCIENTISTS THAT MUCH MORE COMPLEX. BUT THAT MUCH MORE NECESSARY AND EXCITING BECAUSE WE HAVE USABILITY FRAMEWORKS, NEW IMPLEMENTATION THEORY FRAMEWORKS, AND WE HAVE AN IMPLEMENTATION SCIENCE THAT CAN HELP GET US THERE. SO I WILL LEAVE YOU WITH TWO THOUGHTS. HERE IN TERMS OF MOVING THE SCIENCE FORWARD, HERE ARE FIVE AREA AREAS, MAYBE MORE SPECIFIC TO INTERVENTION RESEARCH IF YOU WILL BUT I THINK IT HAS RELEVANCE THAT REALLY NEEDS TO OCCUR IN ORDER TO MOVE THE SCIENCE FORWARD. SO WE HAVE TO IMPROVE THE CLINICAL RELEVANCE OF TRIALS. IS A .10 ON A CONFIDENCE SCALE, CLINICALLY SIGNIFICANT, MEANINGFUL? WHAT IS THE SIGNIFICANCE OF MEASURES MEAN AND WHAT ARE THE NEW MEASURES THAT WE NEED? WE HAVE TO EVALUATE DOSE RESPONSE RELATIONSHIPS BECAUSE THE INTERVENTIONS WE HEARD AND INCLUDING MINE IS THREE, FOUR, FIVE MONTHS, THAT MAY NOT BE WHAT FAMILIES NEED BUT THE HEALTH SYSTEM IS PUSHING US TO ONE HOUR THREE HOURS FIVE HOURS SO WE HAVE TO TOLL TAKE A CLOSE LOOK AT FUTURE RESEARCH IN TERMS OF THAT RELATIONSHIP. COST IS VERY IMPORTANT AS WELL AS WILLINGNESS TO PAY. WHAT ARE FAMILIES WILLING TO PAY FOR DIFFERENT KINDS OF SERVICES AND WHAT IS THE HEALTH SYSTEM WILLING TO PAY? I WON'T GO THROUGH ALL IN DETAIL BUT HIGHLIGHT OUR INTERVENTIONS HAVEN'T NECESSARILY BEEN WELL ARTICULATED IN THE LITERATURE TO ALLOW REPLICATION. SO THAT IS SOMETHING WE NEED TO DO AS WELL AS IMPROVE OUR DESIGNS AND USE MORE PRAGMATIC TRIAL DESIGNS AND LOOKING AT MECHANISMS, WE DON'T KNOW WHY WHAT WE HAVE WORKS OR NOT AND WE NEED TO UNDERSTAND THOSE MECHANISMS IN TERMS OF PSYCHOSOCIAL MEDIATORS AS WELL AS BIOLOGICAL. I WOULD HAVE O TO SAY THE NEXT GENERATION OF RESEARCH HAS TO ADDRESS MORE CLOSELY AND BE ALIGNED MORE CLOSELY WITH CAREGIVING NEEDS AND HOW THEY ARE EVOLVING. AS THE DEMOGRAPHICS, AS WELL OF CAREGIVERS ARE CHANGING. A FINAL POINT PERHAPS IS FOR YOU TO GO BACK TO THE RECOMMENDATIONS FROM THE NATIONAL ACADEMY OF SCIENCES, BECAUSE RECOMMENDATIONS THERE I THINK ARE QUITE RELEVANT TO EVERYTHING WE DISCUSS, THIS IS THE REPORT FAMILIES CARING FOR AGING AMERICA THAT CAME OUT IN 2016. WHAT WE FIND HERE IS THAT ALTHOUGH THE COMMITTEE WAS CHARGED WITH LOOKING AT OLDER ADULTS, THEY'RE IN THE REPORT, THERE IS A CLEAR STATEMENT THAT MOST RECOMMENDATIONS ARE APPROPRIATE FOR CAREGIVERS OF ANY AGE GROUP. IT HAS TO BE A CHARGE TO NIH AND NINR, THAT WE DO NEED A BALANCE OF RESEARCH DOLLARS AND FOCUS, WE NEED ADS WE HAVE HEARD MORE ARE SEARCH IN TERMS OF MEASUREMENT AND INTERVENTION DEVELOPMENT AND EFFICACY TESTING BUT WE ALSO HAVE PROVEN APPROACHES AND THAT HAS TO BE PUSHED OUT, ADAPTED, CULTURALLY SO FORTH SO IMPLEMENTATION SCIENCE IN THAT IS VERY, VERY IMPORTANT. AND ALSO OUR NEW WAY OF THINKING IS AS WE MOVE FORWARD WITH IMPLEMENTATION SCIENCE WE WILL BE ASKING DIFFERENT KINDS OF BASIC RESEARCH QUESTIONS AND DESIGNING OUR INTERVENTIONS MORE THOROUGHLY. SO I WANT TO THANK YOU VERY MUCH FOR THE OPPORTUNITY THE DIRECTOR OF CEREMONY IS A NEW TERM FOR ME. THANK YOU. [APPLAUSE] >> WE ARE ALMOST DONE BUT I WANT TO INTRODUCE OUR NEXT SPEAKER BECAUSE IT IS MY PLEASURE TO TURN THE PODIUM OVER TO DR. MARGUERITE LITTLETON KEARNEY, SHE WILL PROVIDE FINAL REMARKS. DR. KEARNEY LEADS, MANAGES AND COORDINATES NINR'S EXTRAMURAL SCIENTIFIC PROGRAMS, GRANT MANAGEMENT, SCIENTIFIC REVIEW AND ADVISORY COUNCIL OPERATIONS. PRIOR TO JOINING NINR DR. KEARNEY WAS PROFESSOR ASSOCIATE DEAN FOR RESEARCH, GRADUATE SCHOOL OF NURSING OF THE UNIFORM SERVICES UNIVERSITY OF HEALTH SCIENCES. AND SHE'S BEEN ASSOCIATE PROFESSOR AT JOHNS HOPKINS SCHOOL OF NURSING AND MEDICINE AS WELL AS UNIVERSITY OF MARYLAND AND RUSH COLLEGE OF NURSING. DR. KEARNEY'S INTERDISCIPLINARY RESEARCH FOCUSED ON EFFECTS OF SEX HORMONES, ON CEREBRAL VESSEL, SORRY, RECOVERY, AFTER ISCHEMIC CEREBRAL INJURY. PLEASE WELCOME. DR. KEARNEY. [APPLAUSE] >> IT IS MY PLEASURE TO ROUND THIS UP. I THINK WE HEARD A LOT THE LAST TWO DAYS. ONE THING I SAID IS ALMOST EVERY ONE OF US IS CAREGIVER OR EXPOSED TO CAREGIVER, IF THERE'S A SPOUSE OR FRIEND, A CHILD. A PARENT. SO CAREGIVING IS REALLY DEAR TO MY HEART AND MOST OF US AND THE HEALTH OF CAREGIVERS OUR MOST PRECIOUS RESOURCE HAS TO BE HELPED OUT BY UNDERSTANDING ALL THE PRESSURES AND ISSUES THAT GO ALONG WITH CAREGIVING. I THINK WE HAVE DONE A GREAT JOB OVER THE LAST TWO DAYS POINTING OUT SOME OF NET ISSUES. SO AS WE BRING THIS SUMMIT TO A CLOSE, I WOULD LIKE TO THANK YOU ON BEHALF OF DR. GRADY AND STAFF AND NINR AND PARTNER ORGANIZATIONS TO THANK YOU FOR YOUR ATTENDANCE AND THOUGHTFUL QUESTIONS. I WANT TO THANK OUR PRESENTERS FOR THEIR INSIGHTFUL PRESENTATIONS AND OUR AUDIENCE FOR YOUR GREAT QUESTIONS THAT I THINK SPURRED MORE IDEAS FOR STUDIES. THE INFORMATION WE HAVE GAINED HERE WILL GUIDE RESEARCH IN CAREGIVING IN COMMUNITIES IN OUR HOMES AND HELP DEVELOP EVIDENCE BASED STRATEGIES THAT WILL ULTIMATELY IMPROVE THE HEALTH OF CAREGIVERS AND THEIR RECIPIENTS AS WELL. OVER THE PAST FEW DAYS WE HEARD CHALLENGES AND JOYS TOO BECAUSE WE DON'T WANT TO SAY ALL THE NEGATIVE, RIGHT? CAREGIVERS ARE FACED WITH NUMEROUS CHALLENGES AND WE HOPE THAT WE TALK ABOUT STRATEGIES AND AREAS WE NEED TO PURSUE IN ORDER TO IMPROVE THE LIFE OF CAREGIVERS. THEY ARE A PRECIOUS RESOURCE AND NOT UNLIMITED RESOURCE. WE LEARNED ABOUT THE INCREDIBLE WORK BEING DONE IN FIELD OF CAREGIVING SCIENCE RELATED TO CHILDREN AND ADOLESCENTS AND THOSE WITH ACUTE ILLNESS AND CHRONIC CONDITIONS INCLUDING DEMENTIA. SO WE CAN TAKE NEXT STEPS TO IMPROVE THE QUALITY OF CAREGIVERS, QUALITY OF LIFE OF CAREGIVERS AND HOPEFULLY OUR SUMMIT WILL GIVE US STEPPING POINTS FROM HERE. WE HAVE GOT A LOT OF WORK STILL TO DO IN CAREGIVING. THAT'S VERY, VERY OBVIOUS. AND ALL OUR PRESENTERS HAVE SORT OF GIVEN US THAT IDEA. I WANT TO THANK MS. JUDY WOODRUFF WHO GAVE A WONDERFUL KEYNOTE ADDRESS AND GAVE US SOME VERY INTENSELY PERSONAL INSIGHT INTO HER JOURNEY AS MOTHER AND CAREGIVER AND ADS PROFESSIONAL AND I THINK SHE'S GIVEN US A LOT OF FOOD FOR THOUGHT. FROM I WANT TO THANK MS. GRACE WHITING WHO WAS THE DIRECTOR OF CEREMONIES YESTERDAY AND DR. LAUREN GITLIN, DIRECTOR OF CEREMONIES TODAY WHO MOVED OUR TALKS ALONG AND HAVE GIVEN US A NICE SUMMARY MUCH FOOD FOR THOUGHT TO THINK ABOUT WHAT WE'RE GOING, WHERE WE GO NEXT IN OUR CAREGIVER JOURNEY, STUDIES OF CAREGIVERS. WE HAD WONDERFUL SUPPORT, ONE MORE TIME I WOULD LIKE TO ACKNOWLEDGE SUPPORT FROM THE OTHER INSTITUTES FROM THE NATIONAL CANCER INSTITUTE, NATIONAL INSTITUTE OF AGING, THE EUNICE KENNEDY SHRIVER NATIONAL INSTITUTE OF CHILD HEALTH AND HUMAN DEVELOPMENT, THE NATIONAL INSTITUTE OF MINORITY HEALTH AND HEALTH DISPARITY. THE NATIONAL CENTER FOR ADVANCING TRANSLATION OF SCIENCES OFFICE OF RARE DISEASE, THE NIH OFFICE OF BEHAVIORAL AND SOCIAL SCIENCE RESEARCH. THE OFFICE OF DISEASE PREVENTION AND THE OFFICE OF RESEARCH ON WOMEN'S HEALTH. I REALLY ALSO NEED TO CONCLUDE TO ACKNOWLEDGE THE CONTRIBUTIONS TO PROVIDE THE FINANCES FOR THIS TWO DAY SUMMIT. WE HAVE HAD GENEROUS CONTRIBUTIONS FROM THE AMERICAN ASSOCIATION OF COLLEGES OF NURSING. FROM THE ONCOLOGY NURSING SOCIETY AND THE BECKMAN RESEARCH INSTITUTE OF CITY OF HOPE, THE DEPARTMENT OF POPULATION SCIENCES DIVISION OF NURSING RESEARCH AND EDUCATION. AND NATIONAL HONOR SOCIETY THETA TAUO. I WANT TO THANK ALL THE STAFF FOR NINR AND SISTER INSTITUTES FOR PUTTING THIS PROGRAM TOGETHER. ONE FINAL THOUGHT, AS I WAS THINKING ABOUT DISCUSSIONS, IS THAT I WAS REMINDED OF JOHN DUNN'S QUOTE. HE SAID NO MAN IS AN ISLAND, I WANT TO CHANGE IT TO NO PERSON IS AN ISLAND. BUT WHEN YOU LOOK AT CAREGIVERS AND CAREGIVER WORK, NONE OF OUR CAREGIVERS ARE ISLANDS, THERE'S RAMIFICATIONS, THERE'S DOWNSTREAM EFFECTS TO FAMILY MEMBERS, TO CHILDREN, SPOUSES, FRIENDS, WE'RE PART OF FAMILY OF MAN AND WE ALL ARE INTERCONNECTED SO I HOPE FROM THIS SUMMIT WE HAVE GIVEN YOU SOME THOUGHTS AND SOME INTEREST. THANK YOU SO MUCH FOR ATTENDING AND YOUR INSIGHTS TO US AS WELL. [APPLAUSE]