Linda Colozzi Alzheimer for NACC · Self-Care •2. Resources •3. Referrals In 2014 alone, over...

LindaColozzilindacolozzi@me.com

NEWLIFEFORELDERS:BringingHopetoFamiliesSufferingfromtheRavagesofDementia/Alzheimer’sDisease.

NACCAnnualConference2016Chicago,Illinois

LindaColozzilindacolozzi@me.com

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

.