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HCQUCARES

In this Issue:Introduction 2ChokingandAspiration 3Constipation 6Dehydration 9Seizures 11Conclusion 14

Fall 2018Special Edition

ThePennsylvaniaOfficeofDevelopmentalPrograms(ODP),theMassachusettsDepartmentofDevelopmentalServices(DDS),TheAmericanNetworkofCommunityOptionsandResources(ANCOR),andotherstateandfederalagencieshaveidentifiedfourmedicalconditionsthatcommonlypresentinpeoplewithintellectualanddevelopmentaldisabilities(I/DD)andhaveledtoseriousillness,injury,andevendeath.Theseconditions–choking/aspiration,dehydration,constipation,andseizures–areknownasTheFatalFour.Complicationsfromtheseconditionsareconsideredpreventable,andeducationaboutthefatalfouriskeytoincreasinghealthandsafetyforpeoplewithI/DD.

Richardwasa33-year-oldyoungmanwithDownsyndrome.In2012,Richarddiedfromunmanagedconstipation,andhissisterwroteanarticledescribingwhatoccurred.CaregiversreportedthatRichardwaswithdrawnanddistressed;bothhispsychiatristandgeneralpractitionerevaluatedhimandattributedhischangeinbehaviortoamentalhealthconcern.However,Richardwasinneedofmedicalattentionforcomplicationsrelatedtoconstipation.Beforehedied,over22poundsofstoolwasremovedfromRichard’sbowel.Treatmentwasnotenoughtosavehim,astheimpactionpersisted.Heeventuallyaspiratedstomachcontentsanddied.Followinghisdeath,anautopsyrevealedRichard’sbowelwas18cm(7inches)indiameter–morethandoubletheaveragediameterofalargeintestine,whichis7.6cm(3inches).Hissisterwrote,“When Richard left home, assessment reports by professionals said very clearly that his constipation would always need close monitoring and support and that constipation should always be considered as a potential cause, when his mental health deteriorated. Somehow, this knowledge was lost over the years.”

Whileconstipationisknownasacommonproblemthatcausesdiscomfort,hemorrhoids,andchangesinbehavior,itisrarelythoughtofasacauseofdeath.Sadly,allofthefatalfourconditionscanleadtosevereconsequences,includingdeath,whennotrecognizedandtreated.

ThisspecialeditionoftheHCQUCARESnewsletterprovidesinsightastowhypeoplewithI/DDareatriskforthefatalfourconditionsandhowtopreventrelatedcomplications,includingdeath,fromoccurring.Itoffersinformationandtoolstoassistcaregiverstorecognizethesignsofeachoftheconditions,learnpreventionstrategies,andknowwhattodoifitissuspectedthatsomeonehasoneoftheseconditions.

Introduction

Reference:

Handley, E. (2016, October 10). Richard’s story: unmanaged constipation in people with learning disabilities. Retrieved from https://www.kingshealthpartners.org/latest/739-richards-story-unmanaged-constipation-in-people-with-learning-disabilities

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Chokingandaspiration(breathingfluidsintothelungs)oftenarecausedbydifficultywithswallowingandhaveledtoillnesses,infections,andsometimesdeath.ThefollowingfactorsincreasetheriskofchokingandaspirationinpeoplewithI/DD:

• Disordersofthebrainandnervoussystem,suchascerebralpalsy,braininjury,dementia,seizures• Polypharmacy(multiplemedications),withsideeffectsand/orinteractionsthatmightcause

○ Drymouth○ Changesinmusclemovement○ Extrapyramidalsyndrome(amovementdisorder)○ Changesinthenervoussystem○ Irritationofissuesintheesophagus

• Lowmuscletone• Gastroesophagealrefluxdisease(GERD)• Decayedormissingteeth(Klaehn,n.d.)• Feedingtube• Tracheostomy(personbreathesthroughaholeinthethroat)(Cherpes,2018)• Pooreatinghabits

○ Eatingquickly○ Placinglargeamountsoffoodinthemouth○ Eatingnon-fooditems(pica)○ Choosingnottoweardentures○ Poorpostureduringmeals○ Inducingvomitingduringoraftermeals

• meals

Commonsignsapersonhasdifficultywithswallowingandisatriskforchokingandaspiration:

• Coughingorexcessivedroolingwhileeating• Frequentthroatclearingwhileeating• Hittingchest• Shortnessofbreathwhileeating,noisybreathing

The Fatal FourCHOKING AND ASPIRATION

• Personstatesthe“foodisstuck”or“wentdownthewrongpipe”

• Complaintofpainwhileswallowing• Decreaseinappetiteandweightloss

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Signsofchoking

• Anxiousoragitatedstate• Redface• Difficultybreathing• Noisybreathing• Severecoughingorgagging• Handsonthroat• Unabletotalkorbreathe• Skin,lips,andnailsappeargrayorblue• Lossofconsciousness(Cherpes,2018)

Choking is a medical emergency!Thereisnoneedtoobtainapprovalfromasupervisortocall911inthisemergency.(Cherpes,2018)

• Immediatelybeginabdominalthrusts.• Call911.(Ifanotherpersonispresent,directhimorhertocall911.)• Ifthepersonlosesconsciousness,

○ Lowerthepersontothefloor.○ Call911immediately!(Ifanotherpersonispresent,directhimorhertocall911.)○ BeginCPR.

• Afterward,notifytheperson’sphysicianofchokingevent.(Klaehn,n.d.)

Beproactivebyhelpingtoidentifywhoisatriskforchoking.Ifapersonshowssignsofhavingdifficultywithswallowing,notifyothercaregiverssostrategiestodecreasetheriskofchokingcanbeputintoplaceimmediately.

ACTIVESUPERVISIONisimportantduringallmealsandsnacks.Activesupervisionislookingattheperson’sfaceandwatchingthemchewandswallowtoidentifysignsofchokingordifficultyswallowing.Beforeservingfoodsandfluids,checktheperson’scareplanandfollowinstructionsforspecificconsistency.Never leave the person alone with food or fluids that are of a different consistency.

Additional strategies for caregivers to prevent choking and aspiration• Offer30-minuterestperiodsbeforemealsandsnacktimestofosteracalmermoodwhileeating.• TurnofftheTVwhileeatingtoallowthepersontofocusonchewingandswallowing• Encouragethepersontositatanupright90-degreeangle,unlessotherwiserecommended.(This

includespeoplewhoeatinbed.)• Assistwithuseofadaptiveutensilsduringallmealsandsnacks,accordingtocareplan.• Ensuredenturesareinplaceandfitproperly.• Encouragesmallbitesoffood;considerofferingasmallersizeforkorspoonforapersonwhoplaceslarge

amountsoffoodinmouth.• Encouragesipsoffluidsbetweenbitesoffood.• Offergentlereminderstoeatataslowerpace.• Scheduleadequatetimeforeatingsothepersondoesnotfeelrushedfinish• Encouragethepersontoswallowfoodbeforespeaking• Reportsignsofdifficultywithswallowingtotheperson’shealthcareprovider(Klaehn,n.d.).

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Strategies for feeding individuals unable to feed themselves• Sitdownfacingtheperson;donotstandwhilefeeding.• Offersmallbitesoffoodandsipsoffluids.• Askthepersonquestionsaftertheyswallowfood.• Carefullyplacefoodintheperson’smouthinawaythatminimizesdifficultywithswallowing.Proper

placementisdeterminedbythecauseofthedifficulty.Forexample,ifapersonhasweaknessontherightside,foodshouldbeplacedintheleftsideofthemouth.

Whensupportingapersonwhohasafeedingtube,assistthepersontomaintainanuprightpositionof30-45degreesduringandforonehourfollowingfeedingtopreventformulafromflowingupandintothelungs(AmericanGastroenterologicalAssociation,1994).

Choking and the ElderlyPeoplewhoareelderlyhaveagreaterriskforchokingandaspirationduechangesthatoccurwithaging.

• Decreaseinmusclestrengthandcoordinationcaninterferewithproperchewingandswallowing.• Teethoftenbecomeweakorareabsent.• Decreaseinsalivainmouthandthroatcaninterferewithswallowing(KEPROHCQUDysphagia

presentation).

Be proactive and provide ACTIVE SUPERVISION especially for this population.

One single choking event may be a warning sign for future choking events. Choking may lead to aspiration, infection, and possibly death.

TheKEPROHCQUoffersavarietyoftrainingstoassistcaregiverstolearnmoreabouttherisksofchokingandaspirationinpeoplewithI/DD.

• Aging:PhysicalChangesandCare• AspirationPneumonia• CerebralPalsy• Dementia• DigestiveDisorders:LowerGI

References:Klaehn, B. (n.d.). Clinical practice guideline: Assessing risk of dysphagia and choking. Retrieved from https://mfprac.com/web2018/07literature/literature/Gastroenterology/Dysphagia_Klaehn.pdfCherpes, G. (n.d.). Health Alert Choking: A Medical Emergency. Pennsylvania Department of Human ServicesAmerican Gastroenterological Association. (n.d.). Retrieved from http://www3.us.elsevierhealth.com/gastro/policy/v108n4p1280.html

• DownSyndrome/Trisomy21• Dysphagia• EatingDisorders• GeneticSyndromes• NeurologicalDiseases

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Constipationisdefinedashavingfewerthanthreebowelmovementsaweek.Thisisageneraldefinitionandmaybedifferentfrompersontoperson.Itisimportanttoidentifynormalbowelhabitsinthepeopleyousupportandtoknowyouragency’sdefinitionandpolicies.

Thereareanumberofcausesforconstipationsuchas:

• Lackoffiberinthediet• Notdrinkingenoughfluids• Lackofexercise• Sideeffectofmedications• Medicalconditionssuchasdiabetes,stroke,spinalcordinjures

Inadditiontothecauseslistedabove,peoplewithI/DDaremorelikelytobecomeconstipatedduetofactorsspecifictotheirdisability,suchas:

• Lowmuscletone,especiallyintheabdominalmusclesthathelpmoveintestinalwaste• Immobility,whichreducesmovementandpreventsgravityfrommovingstoolthroughtheintestine• Medicationswithsideeffectofconstipation• Inabilitytochewandswallowfibrousfoods• Notenoughtimetousethetoilet,whichmaydecreasetheurgetogo• Noestablishedbathroomroutine;apersistentdelayinusingthebathroomdecreasestheurge• Changesinroutine,suchasanewresidence,dayprogram,orjob• Painordiscomfortmakingitdifficulttogettobathroomintimeorsitcomfortablyonthetoilet

Commonsignsofconstipationareadecreaseinnumberofstools,small,hardstools,straining,andsometimesrectalbleeding.InpeoplewithI/DD,thesignsmightbesubtleordifferentfromthoseusuallyassociatedwithconstipationsuchas:

• Lackofappetite;refusalofmeals• Frequentand/orextendedtripstothebathroom• Avoidingattemptstousethebathroom• Crying,grimacing,gruntingwhileattemptingtomovebowels• Rectaldigging• Hittingabdomen• Hard,protrudingabdomen• Refusingtoparticipateinactivities

The Fatal FourCONSTIPATION

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Ifnotaddressed,constipationcanhaveseverecomplications,likebowelimpactionorobstruction.Symptomsofcomplicationsare:

• Firm,largerthannormalabdomen• Seepingwaterystoolfollowingaperiodofseveraldayswithnobowelmovement• Lackofenergy• Vomiting,whichmaysmelllikefeces• Severeabdominalpain• Possiblebackpain• Sweating,rapidpulse,lowbloodpressure(ifuntreatedmayresultinshock)

If these symptoms are noticed, a healthcare provider should evaluate the person immediately.

Simplestepscanbetakentohelppreventconstipation,including:

• Providingandencouragingfluidsthroughouttheday,especiallytothosewhocannotobtainfluidsontheirown• Documentingandreviewingfluidsconsumedonadailyrecordifunsureoftheamountoffluidsthe

personistaking• Increasingdietaryfiber,whilealsoincreasingfluids

○ Thearticle,“Top10SourcesforFiber”,canbefoundontheWebMDwebsiteatthefollowingaddress:https://www.webmd.com/diet/features/top-10-sources-of-fiber

• Consultingwithadieticianformealandsnacksuggestionswhenthepersonisonafluidrestrictionorlowfiberdiet

• Encouragingphysicalactivitymostdaysoftheweek• Offeringtheopportunityfortoiletingonaroutinebasis,allowingampletimeandprivacy• Providingasmallstooltoproptheperson’sfeetandelevatethekneestohelprelaxmuscles,asnotedin

thepicturebelow,toaidinfacilitatingabowelmovement

• Usingabowelmovementrecordthatindicatesthesizeandconsistencyofeachbowelmovement○ TheBristolStoolChartidentifiesnormalvs.abnormalstools.SearchtheBristolStoolChartontheInternetforaPDFhandout

• DocumentingeachbowelmovementASAPinsteadofwaitinguntiltheendofyourshiftwhenitmaybeforgotten• EnsuringordersforPRNmedicationsforconstipationindicatehowmanyconsecutivedayswithnobowel

movementmustoccurbeforemedicationshouldbegiven,whatactiontotakeifthemedicationisnoteffective,andwhentonotifythephysician.

• CheckingthebowelmovementrecorddailytodetermineifaPRNmedicationisneeded• DocumentingtheeffectivenessofPRNmedication

Consider that many people with I/DD are at risk of constipation. Be proactive and employ preventative strategies for everyone, regardless of whether they are identified as being at risk.

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Constipation and the ElderlyTheelderlyareatgreaterriskforconstipationduetomedicalconditionsthatareprevalentinthisagegroup,suchasthefollowing:

• Diabeticneuropathy• Dementia• Parkinson’sdisease• Irritablebowelsyndrome• Hemorrhoids

PeoplewithI/DDoftentakemanymedicationsthatcauseconstipation,andbythetimetheyreachadvancedyears,theirmedicationlistusuallygrowslonger,increasingchancesforthesideeffectofconstipation.Beproactiveandfollowtipstodecreaseriskforpainandcomplicationscausedbyconstipationforthisagingpopulation.

Constipationcanbeveryseriousandleadtoasevereimpactionthatmayneedtobetreatedsurgically.Afecalimpactionmayalsoteartheintestinalwall,seepstoolintotheabdomen,enterthebloodstream,andcausesepsis.

CaregiverswhoareinterestedinlearningmoreabouthowconstipationaffectspeoplewithI/DDandwaysitcanbepreventedmaywanttoconsiderthefollowingtrainingscontaininginformationrelatedtothissubjectofferedbytheKEPROHCQU.

• Aging:PhysicalChangesandCare• BehavioralManifestationsofPain• BowelManagement• Dementia• DownSyndrome/Trisomy21• EatingDisorders• EmergencyCare:WhentoSeek• GeneticSyndromes• NeurologicalDiseases• PainManagement• SurgeryCare• ThyroidDisorders

References:

Cateora, D. (n.d.). Self-study program -0723C: Constipation. Retrieved August 8, 2018, from https://www.oregon.gov/DHS/SENIORS-DISABILITIES/PROVIDERS-PARTNERS/Documents/0723C-Constipation-Modified.pdf

De Giorgio, R., Ruggeri, E., Stanghellini, V., Eusebi, L. H., Bazzoli, F., & Chiarioni, G. (2015). Chronic constipation in the elderly: a primer for the gastroenterologist. BMC Gastroenterology, 15(1). doi:10.1186/s12876-015-0366-3

KEPRO HCQU Bowel Management presentation

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The Fatal FourDEHYDRATION

Dehydrationmeansthatthebodydoesnothaveenoughwatertofunctionproperly.Therearemanycommoncausesofdehydration,suchas:

• Diarrheaandvomiting• Sweatingexcessively• Fever

PeoplewithI/DDareatanincreasedriskfordehydration,especiallythosewho:

• dependonotherstofeedthemduringmealandsnacktimes• usewheelchairs,relyingonotherstoobtainfluidsforthem• cannotcommunicateverbally,oraredifficulttounderstandandunabletocommunicateclearlythat

theyarethirsty• takemedicationsthatcanleadtodehydration,suchasthoseusedtocontrolseizures,bloodpressure,

andbehavior.(Itisimportanttoreadthesideeffectsofmedicationsbeforeadministeringthem.Sideeffectsofmedicationcanbefoundontheinformationinsertthatisgivenwitheachprescriptionorinamedicationhandbook.)

Commonsignsofdehydrationaredrymouth,headache,dizziness,lethargy,muscleweakness,decreasedurination,anddarkconcentratedurine.Dehydrationmayalsobeindicatedwhenapersonisdifficulttoarouse.Severedehydrationsymptoms,suchaslowbloodpressure,rapidheartbeat,andlackofsweat,mayindicateamedicalemergency.

Drinkingrapidly,takingdrinksfromothers,anddrinkingdirectlyfromthefaucetmaybesignsofdehydrationinpeoplewithI/DD,especiallyiftheycannotcommunicatetheyarethirsty.

Beproactivetopreventdehydration!

• Giveeachpersonawaterbottleduringtothecommunity,especiallywhenoutsideonahotandsunnyday• RemindpeoplewithI/DDtodrinkfluidsbetweenmeals,throughouttheday• EducatepeoplewithI/DD,totheirabilityofunderstanding,abouttheimportanceofdrinkingenough

fluideveryday• Suggestthe8x8rule(eight8ozglassesperday),unlessotherwisespecifiedbytheperson’sphysician• Offerflavored,nocaloriewaterforthosewhodonotliketodrinkwater(pleasenotethatplain

waterispreferred)• Discouragesodaduetothesugarandpossiblecaffeinecontent• Discouragecaffeinatedbeveragessuchascoffeeandtea

• Largeburns• Medicationsthatincreaseurination• Undiagnosedoruncontrolleddiabetes

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References:Klaehn, R. (n.d.). Persons with a developmental disability are at risk for dehydration! Retrieved from https://des.az.gov/sites/default/files/qaunewsletter_dddpreventionseries_1.pdfOppewal, A., Schoufour, J. D., Van der Maarl, H. J., Evenhuis, H. M., Hilgenkamp, T. I., & Festen, D. A. (2018). Causes of Mortality in Older People With Intellectual Disability: Results From the HA-ID Study. American Journal on Intellectual and Developmental Disabilities, 123(1), 61-71. doi:10.1352/1944-7558-123.1.61Schols, J. M., Groot, C. P., Cammen, T. J., & Olde Rikkert, M. G. (2009). Preventing and treating dehydration in the elderly during periods of illness and warm weather. The Journal of Nutrition, Health and Aging, 13(2), 150-157. doi:10.1007/s12603-009-0023-z15 Foods That Help You Stay Hydrated. (2017, June 28). Retrieved from https://www.health.com/health/gallery/0,,20709014,00.html#grapefruit-1

• Increasefruitsandvegetableswithahighwatercontent,suchas○ Cucumbers,iceberglettuce,celery,tomatoes,greenpepper,cauliflower,spinach○ Watermelon,strawberries,grapefruit,cantaloupe,oranges

• OfferalternativetypesoffluidssuchasJell-O,Popsicles,andsoup• Offerfluidsfrequentlywhenthepersonisoutsideinthesunandbefore,during,andafterexercise• Increasefluids,astolerated,whenthepersonisexperiencingfever,diarrhea,andvomiting• Contactthephysicianaskiffluidamountshouldbeincreasedwhenthepersonisill• Offerfluidsthroughoutthedaytopeoplewhocannotfeedthemselves,accesswaterindependently,and

askfordrinks.• Useafluidrecordtorecordtheamountandtypeoffluidtakeneachday,whenuncertainhowmuchthe

persondrinks

One of the best ways to prevent dehydration is to be a role model and drink fluids throughout your shift!

Dehydration and the ElderlyTheHealthyAgingandIntellectualDisabilitiesstudyreportsthatdehydration/malnutritionwasthesecondmostcommoncauseofdeathinolderadultswithintellectualdisabilities.(Oppewaletal.2018).PleasekeepthisinmindaspeoplewithI/DDarelivinglongerthanever.

Theelderlyareatriskfordehydrationbecausetheymayhaveseveralchronicmedicalconditions,maybetakingmanymedications,andmaybeinfrailcondition.Alsoaspeopleage,theirbodies’change,increasingtheirriskfordehydration.Forinstance,

• Totalbodywaterpercentagedecreases• Senseofthirstisreducedandbecomesanunreliableindicatorofthebody’sneedforwater• Decreasedkidneyfunctioninterfereswiththebody’sabilitytoretainwaterandsodium

Itisimportanttomonitorfluidintakeintheelderlytopreventdehydration,especiallyduringillnessandwarmweather.Keepinmind,thepersonmaynotfeelthirstyandaskforadrink.Amorereliableindicatorofproperhydrationistocheckthecoloroftheperson’surine.Clearorlight-coloredurineisasignthepersonishydrated.

Remember, dehydration can lead to serious medical complications including death.

ManyKEPROHCQUtrainings,suchasthoselistedbelow,provideinformationabouthowtopreventdehydrationinpeoplewithI/DD.

• Aging:PhysicalChangesandCare• BowelManagement• Dementia• DigestiveDisorders:LowerGI• Dysphagia• EatingDisorders

• EmergencyCare:WhentoSeek• FoodborneIllnesses• InfectiousDiseases:GeneralInfections• InfectiousDiseases:ResistantOrganisms• SurgeryCare• UrinaryTractInfections(UTI)

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The Fatal FourSEIZURES

Seizureactivityoccursfromabnormalelectricalactivityinthebrain.AccordingtotheNationalInstituteofHealth,“Epilepsyismorecommoninpeoplewithintellectualdisabilitiesthaninthegeneralpopulation.”

The characteristics of seizures vary depending on the area of the brain the disturbance occurs. Such characteristics may include:

• Staring,rapideyeblinking,unresponsiveness• Twitchingofface/extremities,lipsmacking• Changeinbreathingpattern• Odd,repetitivebehavior• Shaking,rigid,jerkingofextremities• Bodystiffening• Suddenaggressivebehavior• Bladderorbowelincontinence

Seizuresoccurformanyreasons,butsomepeoplemayhavespecifictriggersthatproduceseizureactivity.Caregiverscanlookforapatternoftriggerswhenseizuresoccur.Considerthesequestions…

• Wheredidtheseizureoccur?• Whatwasthepersondoingbeforetheseizure?• Wasthepersonsick?• Dotheseizuresoccuratcertaintimesofthedayormonth?• Isthepersonnotsleepingwell?• Wasthepersonexperiencingstress?

Ifthetriggerforseizureactivityisidentified,beproactiveandavoiditasmuchaspossible.Common triggers for seizures are:

• Lateormissedseizuremedication• Highorlowbloodsugar• Dehydration• Highfever• Severeconstipation• Fluctuatinghormonesaroundawoman’smenstrualcycle• Inadequatesleep• Stress• Photosensitivity(brightflashingorflickeringlights)• Auditorytriggers(loudsounds,suddensoundsthatstartle)

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Specificrecordsanddocumentation,suchasthoselistedbelow,mayhelpcaregiversandthephysicianunderstandwhatcantriggerseizureactivity.

• Bowelmovementrecordtoidentifyifthepersonisconstipated• Fluidrecordtohelpensurethepersonishydrated• Foodrecordtohelpkeepbloodsugarstable• Menstrualrecordtoidentifyifseizuresoccurnearwoman’smenstrualperiod• Sleeprecordtoexploreiflackofsleepisatrigger

Taketimetoreviewtherecordsandtakethemtotheperson’sdoctorappointmentswhenapatternisnoticed.

Considerthisscenario:

Karen was reviewing the seizure record of one of the people in her group home. She then gathered the person’s sleep record, blood sugar document, menstrual record, and bowel movement record and compared them to the times the person had seizure activity. She was surprised to find that the person had seizure activity on the day before and the day of receiving a suppository for constipation. She wrote a plan with strategies to prevent constipation as the person was already taking a stool softener. When this was not successful, she informed the PCP and the person was ordered a different stool softener. Afterward, the person was no longer constipated, and her seizure activity significantly decreased.

Other ways to prevent seizures and keep the person safe include:

• Speakingtotheneurologistforspecificordersonwhattodoifseizuremedicationsaremissedoradministeredlate.Thiswilleliminatetimespentcontactingtheagencynurseand/orthephysician.

• Encouragingnutritiousmealsandsupportingahealthylifestyle,includingpropersleep• Monitoringthepersonduringshowersandbathsbystandingoutsidethebathroom• Encouragingthepersontotakeashower,usingashowerchair,insteadofabath

Always stay with the person throughout the seizure and keep the person safe by:

• Helpingthepersonliedownonthefloororbedifnecessary• Looseningclothingaroundtheperson’sneckandremovingglasses• Placingthepersononhisorhersidetoallowsalivatodrain(thisalsopreventsaspiration

ifthepersonvomits)• Notputtinganythingintheperson’smouth(theycannotswallowtheirtongue)• Notrestrainingtheperson(theseizurecannotbestopped)• Providingpaddingundertheperson’sheadtopreventaheadinjury• Notmovingthepersonunlessheorsheisinanunsafearea• Checkingforbreathingthroughouttheseizureactivity

Aftertheseizure,thepersonmaybeverylethargic.Allowthepersontorestorsleepasneededandcheckonhimorherfrequently.Donotadministermedication,orfeedorprovidefluids,untilthepersonisfullyawake.

Most seizures need little intervention; however, there may be times to call 911, such as when:

• Itistheperson’sfirstseizure• Thepersonisnotbreathing• Theseizurelastsover5minutes• Seizurescontinueoneafteranother• Aheadinjuryorotherbodilyinjuryoccurredduringtheseizure

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• Theseizureoccursinwater

Documentingspecificseizurecharacteristicsisimportantbecausetheinformationcanassistthephysiciantoidentifythetypeofseizurethepersonexperiencedandprovidepropertreatmentandmedications.Usingadetailedseizurerecorddesignedtodocumentseizureactivityismoreeffectivethanwritinginsentenceformwhatoccurredduringtheseizure.TheEpilepsyFoundationprovidesaseizurerecordcontainingacheckofflistofseizurecharacteristicsthatmightbenotedduringseizureactivity.Itmaybefoundathttps://www.epilepsy.com/sites/core/files/atoms/files/event_calendar.pdf

Seizures and the ElderlyAccordingtotheCentersforDiseaseControlandPrevention(CDC),seizuresaremorelikelytooccuraspeopleageduetoriskfactorssuchas:

• Strokes• Headinjuries• BrainandnervoussystemsdisorderssuchasAlzheimer’sdisease• Braintumors

TheCDCreportsthatapproximatelyhalfofolderpeoplewhoexperienceseizuresdonotknowthecauseoftheirseizures.Seizuresmayalsogoundetectedwhenoccurrenceslikefalls,confusion,memoryloss,orsensorychangesareattributedtoaging,andmayreallybesignsofepilepsy.SeizuresoccurringinpeoplewithI/DDareoftenunrecognizedbecausethechangeintheperson’sbehaviorisblamedontheirintellectualdisability.

Documentandreportanychangeinbehaviortothephysician,especiallyasindividualsage,toensureaproperevaluation.

Seizures may be life threatening if the person stops breathing, has an irregular heartbeat during a seizure, or falls and sustains a severe injury.

MoreinformationaboutseizureactivityinpeoplewithI/DDcanbefoundinthefollowingKEPROHCQUtrainings:

• CerebralPalsy• DownSyndrome/Trisomy21• EmergencyCare:WhentoSeek• GeneticSyndromes• MedicalFacilities:AppropriateUse• NeurologicalDiseases• SeizureOverview

References:

Robertson J, et al. (n.d.). Prevalence of epilepsy among people with intellectual disabilities: A systematic review. - PubMed - NCBI. Retrieved from https://www.ncbi.nlm.nih.gov/pubmed/26076844

State of New Jersey Department of Human Services. (n.d.). Retrieved from https://www.state.nj.us/humanservices/news/publications/DDD%20seizures%20bulletin.pdf

Centers for Disease Control and Prevention. (2018, May 15). Epilepsy and Older Adults. Retrieved from https://www.cdc.gov/features/epilepsy-older-adults/index.html

Kepro HCQU Seizure Overview presentation

The Fatal Four (August 1, 2018) Pennsylvania Department of Human Services ppt.

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Improving the Life Expectancy of People with I/DDTheKEPROHCQUhopescaregiverswillreviewthisinformation,understandtheharmtheFatalFourcancause,andfollowthestrategiesprovidedtopreventFatalFourconditionsfromoccurring.However,theremaybepeoplenotyetidentifiedasbeingatrisk.Caregiversandagenciesshouldconsiderasking:

• IsthereamethodtoidentifypeopleatriskfortheFatalFour?• Areprecautionsorstrategiesinplacetoeliminateorreducetherisk?• Arecaregiverseducatedonthesestrategies,especiallyaspeopleintheircareareaging?• Isappropriatedocumentationbeingcompletedtoaddressthesafetyandhealthconcernsrelated

totheFatalFour?• Areprocessesinplaceforemergencyresponseandcalling911?

RecognizingandpreventingthedangersofthesefourcommonconditionsthatcanjeopardizethelifeofpeoplewithI/DDisoneofthemostimportantwayscaregiverscanimprovethehealthandwelfareofpeopletheysupport.ThepopulationofadultswithI/DDage60andolderisgrowingdramaticallyandisestimatedtoincreasefrom850,600inthecommunity,basedonthe2010UScensus,toanestimated1.4millionby2030,duetoincreasinglifeexpectancyandtheagingofthebabyboomergeneration(Factoretal.,2012).Thesefourconditionsmaybeseenmorefrequentlyaspeopleage.Thetakehomemessageisthatthecomplicationsandpooroutcomesthatcanarisefromthesefourconditionsarepreventable.Caregiverswhounderstandthesefourconditionsandarealerttotheirsignsandsymptomsarewellpreparedtopositivelyimpactthehealthandsafetyofthepeopletheysupport.

Conclusion

References:

Factor, A., Heller, T. & Janicki, M. (2012). Bridging the aging and developmental disabilities service networks: Challenges and best practices. Chicago: Rehabilitation Research and Training Center on Aging with Developmental Disabilities, Lifespan Health and Function, University of Illinois at Chicago. Retrieved from: http://www.acf.hhs.gov/sites/default/files/aidd/bridgingreport_3_15_2012.pdf

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