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Alzheimer’s&AfricanAmericans

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Na;onalBrainHealthCenterforAfricanAmericans

@brainhealthaa

VisitourwebsiteandsubmityourlocalcogniDvehealthevents!

h?p://brainhealthcenterforafricanamericans.org

UpcomingBrainHealthTrainings•  Friday,July22–Pi?sburgh,PA•  August20–Indianapolis,IN•  August27–Cleveland,OH•  September10–Dallas,TX

•  September17–Bal;more,MD•  Thursday,September22–LasVegas,NV

•  September24–Phoenix,AZ•  September24–Atlanta,GA•  October8–Petersburg,VA•  October22–Boston,MA

•  IfinterestedinlearningmoreaboutthesetrainingopportuniDes,pleaseemail:[email protected].

GoalsforToday’sWebinar•  PurposeoftheNa;onalBrainHealthCenterforAfricanAmericans

•  Whatiscogni;vehealth?

•  UnderstandingthechallengesofAlzheimer’s

•  Whatcanwedoascaregivers?

•  Howtolivewithlovedoneswithdemen;a?

•  Calltoac;on–what’snext?

Dr.PernessaSeeleFounder&CEO,TheBalmInGilead,Inc.

Moderator

•  Raiseawarenessoftheissuesofcogni;vehealth

•  Cogni;vehealthistheabilitytothink,tolearn,reason,think,judge,plan,organize….

•  Servesasaninforma;onhubonthehumanbrain

•  ThreefocusareasfortheBrainHealthCenter:•  BrainHealthEduca;on•  Mobiliza;on&Advocacy•  Network

•  BrainHealthEduca;on•  Alzheimer’s•  Stroke•  Epilepsy•  Trauma;cBrainInjury(TBIs)

•  Mobiliza;on&Advocacy•  Caregivingandclinicalresearch

•  Networking•  Jointhefight!

USAgainstAlzheimer’sNetworkDirector,AfricanAmericansAgainstAlzheimer’s

StephanieMonroe

ChallengesofAlzheimer’sintheAfricanAmericanCommunity

WhatWeCanDotoStopIt

LifeExpectancyatBirthbyRaceandGender,UnitedStates,1900-2010

Source:1900-1969:Na;onalCenterforHealthSta;s;cs,Na;onalVitalSta;s;cs,“UnitedStatesLifeTables,2008”,Vol.61,No.3,Sept12,2012,tab46;1970-2010:Na;onalCenterforHealthSta;s;cs,Na;onalVitalSta;s;csReports,“Deaths:FinalDatafor2010”,Vol.61,No.4,May8,2013,tab80*DataforBlackbetween1900-1969areshownasnon-white

WhatisAlzheimer’s

Alzheimer’sdiseaseisanirreversible,progressivebraindiseasethatslowlydestroysmemoryandthinkingskills,andeventuallyeventheabilitytocarryoutthesimplesttasks.

Itisthemostcommoncauseofdemen3ainolderpeoplebutisnotanormalpartoftheagingprocess.

Thegreatestriskfactorsareadvancingage,certainillnesses(diabetes,highbloodpressure,heartdisease),physicalinac;vityandfamilyhistory.

One1outofevery8individualsoverage65hasAlzheimer’s.Nearlyhalfofindividualsoverage85hasAD

WhatarethesymptomsofAlzheimer’s?

! Memoryimpairment! Languageskillsanddecisionmaking.

! Personalityandbehavioralchanges! Inabilityrecognizefamilyandfriends

! Unusualirritabilityandaggression! Eventualcompleterelianceuponothersforbasicac;vi;esof

dailyliving.

Alzheimer’s:ACancer-SizedProblem

Anew8yearstudysuggestsAlzheimer’sdeathsmaybemorethanhalfamillionlivesayear–placingitjustbelowheartdiseaseandcanceronthelistofAmerica’stopkillers.

–  Source:RushUniversity,Chicago.–  Publishedinthepeer-reviewedjournalNeurology

AD-NumbersAreGrowing

"  5.4millionpeoplearelivingwithAD

"  15.2millionfamilyandfriendsaretheircaregivers

"  17.2billionhoursofcareisuncompensatedatavalueof$210.5billion

"  44%ofLa;nosand34%ofBlacksreceivehome-basedfamilycaregiving(Weissetal2005)

"  WomenaremostlikelytodevelopAlzheimer’sandalsomostorentheonescaringforsomeonewithADoranotherdemen;a

HowDoesAlzheimer’sImpactAfricanAmericans?

! AfricanAmericansaretwotothreeBmesmorelikelytodevelopAlzheimer’sdiseasethannon-HispanicWhiteAmericans.

! Alzheimer’sdiseaseisthe6thleadingcauseofdeathforallAmericansandthe4thleadingcauseofdeathforolderAfricanAmericans.

WhyThisImpactonAfricanAmericans?

# Denialofsymptoms

# AcceptanceofDiseasesymptomsasnormal

# DelayedDiagnosis(ifatall)

# Lowresearchpar;cipa;onrates

DisparateImpactonWomenandTheirFamilies

Source:Authors’calcula;onsbasedonthe2010MEPS,the2010&2012Alzheimer’sDiseaseFacts&FiguresandtheCensusBureauData.

DisparateRegionalImpacts

Source:Authors’calcula;onsbasedonthe2010MEPS,the2010&2012Alzheimer’sDiseaseFacts&FiguresandtheCensusBureauData.

DisparateRacialImpacts

•  WhileAfricanAmericansmakeuponly13.6percentoftheU.S.popula;on,theybearover33percentofthecostsofADandotherdemen;as.

•  Caregivingrepresents60%ofthesecosts

•  WomenwithADorcaringforapersonwithADbearmorethan60%ofthesecostsofAD.

•  Indirectcostsofunpaidcaregivingarealsosignificant-17.4billionhoursworth$43.6billion.

•  AfricanAmericansbetweentheagesof40and64lost$6.1billioninlabormarketproduc;vityduetoAlzheimer’s-mostlyfromlostwages.

•  Source:TheCostsofAlzheimer’sandOtherDemen;aforAfricanAmericans,September2013.

ImpactonWorkingFamilies

•  Morethan50%ofAfricanAmericancaregiversfindthemselvessandwichedbetweencaringforanolderpersonandapersonunder18.

•  66percentofAfricanAmericancaregiversareemployedeitherfullorpart-;me.50%havetochangetheirworkschedule.

•  Source:Caring.com

ThankYou

StephanieMonroe

[email protected]

www.AfricanAmericansAgainstAlzheimers.org

DemenDaCoachUniversalDemenDaCaregivers

Dr.PaulaDuren

Caregivers Passage Through Dementia

Paula Duren, Ph.D.

Universal Dementia Caregivers

WhowouldhaveeverthoughtthatmomwouldpassfromAlzheimer’sanddadfromVasculardemen;awithin9monthsofeachother.

UNIVERSALDEMENTIACAREGIVERS

…UDCisanon-profitorganiza;on

…educa;ngcaregivers,familiesandcommuni;essuppor;nglovedoneswithAlzheimer’sandotherdemen;arelateddiseases.

…strivetoofferrealbenefitstocaregiversespeciallythoseinneedbasedcommuni;es.

…beatrustedresourcehelpingcaregiversmanagethesocial,spiritual,emo;onalandprac;calneedsofthosesufferingwiththedisease.

DEMENTIA…ageneraltermthatreferstoadeclineinmentalability…symptomsincludingmemoryloss,personalitychange,andimpairedintellectualfunc;oning…thatimpactsdailyfunc;oning….resul;ngfromdiseaseortraumatothebrain…connec;onsarelostandneuronseventuallydie

WHAT WE KNOW 1in9seniorshasAlzheimer’sbuthalfdon’tknowit•  Insomecommuni;esofcolorthedevelopmentofAlzheimer'sis2to3;mesmorelikely

•  Diseaselesslikelytobediagnosed•  Lesslikelytohaveopendiscussionsabout“mentalillness”•  Personalissuesorentakentothechurch

WHAT WE KNOW •  Over16millionAmericansprovideunpaidsupporttofamilyandfriends

•  Mostcaregiversarewomen

•  Caretypicallyoccursinthehome•  Mostreportfeelingburdenedandstressed

•  51%ofcaregivershaveotherjobs•  Mostarenotpreparedforthisnewrole•  CaregiversareorenreferredtoastheSecondSilentPa3ent

CAREGIVER HEALTH

Your LIFE moves with the disease progression of your LOVED one

Donotbeanxiousforanything….

universaldemenDa

LEARNING MODULES:

•  IAmACaregiver?•  WhatDoesADiagnosisofDemen;aMean?

•  Demen;a–StagesandBehaviors•  “MyLightsAreGoingOutButIt’sNotDarkInHere”–7keyskills(2)

•  Demen;a–EndofLife

1. RememberforMe

2.TalktoMeNotAboutMe

3.IHearandFeelYourEnergy

4.SurroundMeWithHappyPeople5.ComfortMeWithTouch

6.Don’tBeAshamedofMe

7.HelpMeFeelSafe

SEVEN STEPS TO CARE

ThoughourouterselfiswasDngaway,ourinnerselfisbeingreneweddaybyday.

STRESS INDICATORS • Anger and anxiety • Denial • Social withdrawal • Guilt and feeling trapped • Depression • Helplessness • Never any time • Health problems Blessed to be a blessing to others.

CAREGIVER HEALTH

•  Acceptroleofcaregiver•  Getorganized•  Beagooddetec;ve•  Givethempermission•  Adjustexpecta3ons•  Allowotherstohelp•  Increasehealthybehaviors•  Takeonedayata;me•  Connecttothewholeperson

CAREGIVER HEALTH

Thoughourouterselfiswas;ngaway,ourinnerselfisbeingreneweddaybyday.

•  Interac;veMaterials-DVD;CD;Journal;Book

•  SpeakingEngagements

•  Familycoaching

•  SupportGroups•  Homeassessments

Contact: 248.509.HELP (4357)

Email: [email protected] www.universaldementia.org Please support our work – donate.

#brainhealthaa

Na;onalBrainHealthCenterforAfricanAmericans

@brainhealthaa

VisitourwebsiteandsubmityourlocalcogniDvehealthevents!


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