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NEWLIFEFORELDERS:BringingHopetoFamiliesSufferingfromtheRavagesofDementia/Alzheimer’sDisease.
NACCAnnualConference2016Chicago,Illinois
NEWLIFEFORELDERS:BringingHopetoFamiliesSufferingfromtheRavagesofDementia/Alzheimer’sDisease.
NACCAnnualConference2016Chicago,Illinois
Welcometothisday!!NewLife…..BringingHopetoFamilies!
Looktothisdayforitislife,InitsbriefcourselieallTherealitiesandtruthsofexistence,Thejoyofgrowth,thegloryofaction,Thesplendorofbeauty…
TodaywelllivedmakeseveryYesterdayamemoryofhappinessAndeverytomorrowavisionofhope.Lookwell,therefore,tothisday… -AncientSanskritProverb
Alzheimer’sDisease
IMAGE
feeling
WordPhrase
QUESTIONtoaskourselves…..
Inlifetoday,wherefearreignsfree,andthepaceofourdaytodaylivingrunsonthefasttrack,howdoweholdourfaithinplacewhentragedylikeAlzheimer’sDiseasetearsopenourworld?
ThreeStepProcess
u I.NEEDS/EXPECTATIONS-assessment
u II.PRACTICES-discoverthetoolsneededandusethem
u III.OUTCOMES-reviewtheresultsandmoveforward
PopeFrancis
“Theonlywayforindividuals,families,andsocietiestogrow,theonlywayforthelifeofpeoplestoprogress,isviathatcultureofencounter,acultureinwhichallhavesomethinggoodtogiveandallcanreceivesomethinggoodinreturn.”
Welcometothisday!!NewLife…..BringingHopetoFamilies!
Looktothisdayforitislife,InitsbriefcourselieallTherealitiesandtruthsofexistence,Thejoyofgrowth,thegloryofaction,Thesplendorofbeauty…
TodaywelllivedmakeseveryYesterdayamemoryofhappinessAndeverytomorrowavisionofhope.Lookwell,therefore,tothisday… -AncientSanskritProverb
FAMILIARPRAYER
33ScriptureVersesrevealingtousnottofear
Matthew6:34
1Peter5:6-7
Isaiah35:4
Luke12:22-26
Psalm27:1
Psalm55:22
Mark6:50
Deuteronomy31-6
Isaiah41:10
Psalm56:3
Phillipians4:6-7
John14:27
2Timothy1:7
1John4:18
Psalm23:4
Joshua1:9
Psalm46:1
Psalm118:6-7
Proverbs29:25
Mark4:39-40
Psalm34:7
1Peter3:14
Psalm34:4
Deuteronomy3:22
Revelation1:17
Mark5:36
Romans8:38-39
Zephaniah3:17
Psalm91:1-16
OverarchingGoalsofWorkshop
uAbletodescribeownexperiencesandemotionswithD/ADuAbletoidentifycommonthemes,tools,emotionsandpracticesusedintheirexperienceswithD/ADandwithfamilies
uAbletoanalyzeavarietyoftools,strategies,resourcesusedineffectiveaccompanimentoffamiliessufferingwithD/AD
uAbletodevelopahopefulapproachforworkingwithfamiliessufferingfromD/AD
WholeGroupGoalDevelopment
uWhatdoWEwanttoaccomplishbytheendoftoday?
u Takeresponsibilityforgettingyourneeds/expectationsmettoday.
QUESTIONtoaskourselves…..
Inlifetoday,wherefearreignsfree,andthepaceofourdaytodaylivingrunsonthefasttrack,howdoweholdourfaithinplacewhentragedylikeAlzheimer’sDiseasetearsopenourworld?
SmallGroupSharing-BestPractices
uWHATTOOLS/RESOURCES/SPIRITUALITIESdoyoudrawuponwhenyouworkwithpeoplesufferingfromDementia/Alzheimer’sDisease?
uSomeonetakenotestosharewithwholegroup.
ThereisaTimeforEVERYTHING…..Ecclesiastes3
u Thereisatimeforeverything,andaseasonforeveryactivityundertheheavens:
u Atimetobebornandatimetodie,u Atimetoplantandatimetouproot,u Atimetokillandatimetoheal,u Atimetoteardownandatimetobuildu Atimetoweepandatimetolaughu Atimetomournandatimetodance……..
.
Reisa Sperling, M.D. Center for Alzheimer Research and Treatment
Brigham and Women’s Hospital Massachusetts General Hospital
Harvard Medical School
Alzheimer’s Disease
• Typically manifests with insidious progression of memory loss and executive
dysfunction • Eventually affects language, visuospatial,
behavior • Accounts for 60-70% of all late-life dementia • Prevalence increases exponentially by decade
Good News / Bad NewsBAD NEWS FIRST • 1 out of every 9 individuals over 65 has AD! • 5.8 million AD patients currently in U.S., increasing
exponentially over the next 3 decades • Cost estimates - > $$ 203 billion/year • Several recent drug trials failed to show benefit GOOD NEWS • Multiple new mechanisms starting clinical trials • Long preclinical phase of AD to intervene!
Jost BC, Grossberg GT. J Am Geriatr Soc. 1996;44:1078-1081.
Agitation
Diurnal Rhythm
Irritability
Wandering Aggression
HallucinationsMood Change
Socially Unacceptable
Delusions
Sexually InappropriateAccusatorySuicidal
Ideation
Paranoia
Depression
100
80
60
40
20
0–40 –30 –20 –10 0 10 20 30
Months Before Diagnosis Months After Diagnosis
Prev
alen
ce (%
of p
atie
nts)
Anxiety
Social Withdrawal
Behavioral Symptoms: Common over progression of AD
Urgency and Opportunity• We have no successful disease-modifying
treatments for Alzheimer’s disease (yet….) • We have been running trials at the late stages of
a disease process that begins decade(s) before dementia
• We have 10,000 baby-boomers turning age 65 every day in the US entering the age of risk
• We have many challenges ahead but we have an incredible opportunity to inform the field and if we are successful… to fundamentally change the paradigm of AD treatment
Encouraging history from other fields• Cholesterol Wars in Cardiology
• Good vs. bad cholesterol • Secondary prevention trials in familial
hypercholesterolemia and in post-MI • Reduction of cholesterol estimated to have reduced
cardiac morbidity and mortality by 28% • Amyloid does not have to be “the” cause of AD, merely “a” critical factor to impact the disease • Ultimately will likely need combination therapy (COMBAT trial) to fully prevent AD dementia
SeeingDementia/Alzheimer’sDiseasewithNewEyes
The Inner & Outer World
PatienthoodtoPersonhood
ISEEYOU.
ISEEYOURUNIQUENESS.
ISEEOURCOMMONHUMANITY.Oasis2.0SusanWehry,MD2015
WHODOYOUSEE????
ApersonwithDEMENTIA
APERSONwithdementia
Oasis2.0SusanWehry,MD2015
Caregivers—whatdotheyneed??•1.Self-Care•2.Resources•3.Referrals
In2014alone,over15millioncaregiversprovidedanestimated17.9billionhoursofunpaidcaretofamilyandfriendslivingwithAlzheimer’s–acontributionvaluedat$217.7billion.
Making
Relationship
connections
ActivitiesthatsupportEncounter
• Reachingoutandconnecting• Environmentconducivetoencounter(i.e.arrangechairs)• Householdtasksthatprovidepurpose• Musicmemory• Plannedscheduledevents• Spontaneousactivitiesofsharing
TOOLStouseforselfandothers
• Presence• Positivity• DeepListening• EmbraceChange• MakeanAllyofDifficulties• Everyoneisright___partially!• RecognizeGrief
• Discipline (able to learn and change through experience of doing our best) • God, Divine principle, Higher
Power • Commandments
• Structure • Daily Practices
• Support— ask for help • Community, friend, professional
Practices/HabitstoDevelopovertimebydoingthemconsistently• SpiritualPractices:(namethem,listthem)
• Mental/EmotionalPractices:
• Physical
GOAL:SpiritualFitness(Bringingawarenesstobalancingbody,mind,andspiritdaily)
PracticingGratitude
Icannootheranswermakebutthanks,andthanks,andeverthanks. -Shakespeare
“Whenmyheartisoverflowingwithgratitude,thereisnoroomforFEAR.”
-KathyKendall
Whenweserve,especiallythepoorinbody,mindorspirit,weemptyourselvesandallowlovetohealus!
“Thevirtuesoftheinfirmaremeekness,humility,patience,resignationandgratitudeforhelpreceived.” -St.ElizabethAnnSeton
Allmyneedsforsecurity,affectionandcontrolaremet,andIletgoofmydesiretochangeanything.
WELCOMING(EVERYTHING)PRAYER-
Resourcesto
explore
MusicFacial expression
Touchsmile
Resources •Websites
• Alzheimer’sAssociation
• NationalInstituteofHealth
• Gratitudequotes• CaregiverActionNetwork
• Books• CatholicSpiritualPractices
• TheFourThingsThatMatterMost
• LastingWords• YouCanHealYourHeart
“Faithliftsthestaggeringsoulontheoneside,Hopesupportsitontheother…Experiencesaysitmustbeandlovesays…letitbe.” -St.ElizabethAnnSeton
SELF-CAREBefore you speak of peace, you must first have it in your heart…
We have been called to heal wounds, to unite what has fallen apart, and to bring home any who have lost their way.
-St. Francis
“Comethen,MyLove,come!Forsee,winterispast,therainsareoverandgone,theflowersappearontheearth,andtheseasonofgladsongshascome!
CANTICLESOFCANTICLES2:11-12
FAITH,HOPEandLOVE THEMOSTIMPORTANTISLOVE
GODISLOVE
TheMysteryofFAITH ThePaschalMystery
Life,Death,andResurrection
Life,Transition,Death,Transition,NewLife
Becomingfullyhumanisalife-longjourneyoffaith…..
• Beingpatientandkind• Notenviousorrude• Behavesappropriately• Seeksthebestinterestsofothers• Noteasilyprovokedtoanger• Keepsnoaccountofwrong• Butrejoicesinthetruth
• BEARSALLTHINGS• BELIEVESALLTHINGS• ENDURESALLTHINGS
• LOVENEVERFAILS!Adapted1Cor.13GODISLOVE….......
AllowingtheDivine tobreakthroughandloveus!
“Oh, when we are sick of ourselves, weakened on all sides, discouraged with repeated relapses, wearied with sin and sorrow, we gently, sweetly lay the whole account at His feet! Merciful Savior! Can there be any comparison to this blessedness?” -St. Elizabeth Ann Seton
“JoyandSorrow aretheshadeandlightoflife;withoutlightandshadenopictureisclear”
• HazratInayatKhan
“Icandoallthingsinhimwhostrengthensme.”
Philippians4:13
EmbracingNewLifewithIgnatius
uScripture-basedprayer
uDailyexamenuRegularjournaling
ArticlebyBarbaraLee-AgingwithIgnatius;AmericaMagazine3/28/16
“MaytheGodofhopefillyouwithalljoyandpeaceinbelievingsothatyoumayaboundinhopebythepoweroftheHolySpirit.”
ROMANS15:13
REVIEW
Makingallthingsnew:NewLifeforElders…
Co-creationTransformationResilienceHope
.