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Copyright © 2011 Health and Aging Program, Horizon Health Network, Rhynold, Hurley & Hobbs. This publication may be reproduced, in whole, by any means, without charge or further permission for education of patients, caregivers, students and staff. No profits may be made from the reproduction of this publication. Excerpts may be reproduced provided that this publication is cited as the source information.

This is a Canadian resource about dementia. The following email address is ONLY for comments about this booklet. It is not for patient specific questions. You will not receive a response from a healthcare professional.

Email: dementiacompass@HorizonNB.ca

Cover & Interior Design: Sheena Dougan, Multimedia, Horizon Health Network

ISBN 978-0-9881014-2-5E-book ISBN: 978-0-9881014-9-4

Dedicated to all the people we have met whose lives

have been touched by dementia. It has been our privilege to learn with you.

Cette publication est également disponible en français.ISBN 978-0-9881014-5-6E-book ISBN: 978-0-9881014-6-3

6 7

Introduction ..........................................9 • Whattoexpectinthe

laterstagesofdementia .......................10

PART 1: Where people with late stage dementia live ..................... 13 • Movingtoanursinghome .................... 14 • “24hourcare”athome ........................ 21 • Avoidingcrisis:Therisksofvisits

totheemergencyroomand admissiontohospital ............................23

PART 2: Making comfort the priority....27 • Medications .........................................28 • Foodandnutrition ................................29 • Paincontrol ..........................................32 • Skinirritation .........................................34 • Constipation .........................................35 • Shortnessofbreath ..............................37 • Comfortfromspiritualcare–

Contributor Rick Benson B.A. B.Ed. M.A. ......39 • Whattoexpectaslatestagedementia

progresses:Endoflifewithdementia ....40

Contents

8 9PART 3: Decision-making .................43 • Whomakesthedecisions? ....................43 • Whatdecisionswillneedtobemade? ...45

-Livingarrangements ............................45-Cardiopulmonaryresuscitation(CPR) ....46-Goalsoftreatment ..............................48-Autopsy ..............................................49

PART 4: How life changes for the caregiver ................................53 • Whatisyourrolewhensomeoneelse

isdoingtheday-to-daycaregiving? .......53 • Theemotionalroller-coasterofthe

laterstagesofdementia ........................57 • Whatsupportisavailableforcaregivers

inthelaterstagesofdementia? .............62

PART 5: Additional information ...........66

Appendices ........................................69 • Appendix1LifeStory–

Contributor Tracy McGrath BPE ..................69 • Appendix2SensoryPreferences–

Contributor Tracy McGrath BPE ..................73

Introduction

“When life sends you down a path you don’t expect, it’s okay to stop and ask for directions.”

Dementiaisanameforbraindiseasesthatgetworseovertimemakingitdifficulttofunctionwithouthelpfromothers.

Thisbookletwaswrittenforpeoplehelpingsomeonewith“latestage”or“endoflife”dementia.Therearemanysourcesofgeneralinformationaboutdementia.Pleaseconsiderreadingtheothertwobookletsinourdementiaseries:

• AnIntroductiontoDementia

• TheDementiaCompass

10 11• Gettingcleaninthetub,showerorwitha

spongebath.

• Movingfromthebedtoachairorstandingupfromachair.

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What to expect in the later stages of dementia

Late stage dementiaTheAlzheimerSocietyofCanadadefineslatestagedementiaas“thetimeatwhichthepersoneventuallybecomesunabletocommunicateverballyorlookafterthemselves.Careisrequired24hoursaday”.

Peoplewithlatestagedementiawillneedhandsonhelpwithsomeorallofthefollowing:

• Gettingfoodfromtheplatetotheirmouths.

• Puttingclothesonandtakingthemoff.

• Changingpadsorincontinencebriefsifbowelandbladderaredifficulttocontrol.

• Thoroughlycleaningafterusingthetoilet.

12 13

PART 1: Where people with late stage dementia live

Itisverycommonforapersonwithdementiatoneedmorehelpthancanbeprovidedbyfamilymembersathome.Someofthechallengeswhencaringforsomeonewithlatestagedementiacaninclude:

• Lossofbowelandbladdercontrol.

• Lackofbalanceandfalling.

• Difficultyclimbingstairs,walking andstandingup.

• Notcooperatingwithbathinganddressing.

• Angeroutbursts,suspiciousnessandsleepdisruptionatnight.

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14 15• Twenty-four hour staffing: Becausethere

arepaidstaffmembersaroundtheclocktheremaybemoreactivitiesthroughoutthedayandmoresupervision,especiallyovernight.

• Prevention of caregiver burn-out: Thereisresearchthatshowsthatbeinga24-hourcaregivercanbehardonthecaregivers’physicalandemotionalhealth.Staffatthenursinghomeworkinshiftstodecreasethiskindofstress.Amovetoanursinghomecanoftenavoidacrisissuchasthecaregiverbeingadmittedtohospital.

Eventhoughtheremaybeadvantagestonursinghomes,manypeoplehelpingsomeonewithdementiaareslowtoinvestigatenursinghomeoptions.Hereisalistofsomeofthereasonspeopleworryaboutmovingapersonwithdementiatoanursinghome.

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• Healthissuesthatrequireatrainednurse.

• Poorcaregiverhealthordeathofthecaregiver.

Peoplewithlatestagedementiausuallyliveinoneoftwoenvironments:homewith“24hourcare”orinanursinghome.Thegoalofbothoftheseoptionsistohelpthepersonwithdementiabeascomfortableaspossibleandavoidprolongedstaysinhospital.

Moving to a nursing home Althoughweoftenfeel“there’snoplacelikehome”,thepersonwithdementiaissometimeshealthierandmorecomfortablelivinginanursinghome.Threeofthethingsthatnursinghomescanoftenprovideinclude:

• A regular routine:Hopefullythisroutinewillbetailoredtothepersonwithdementia.Aregularroutineisoftencalmingforpeoplewithdementia.

16 17whatishappeningathome.Althoughitmay behard,itisimportantthateveryoneknowswhat is“happeningbehindcloseddoors”.

• Maybethereisalackofunderstandingaboutthediagnosisofdementiaorhowdementiachangesovertime.IfthisisthecaseitmaybehelpfulforthemtoreadaboutdementiaorcontactthelocalAlzheimerSociety.

Reluctance to be the one who makes the decision.• Oftenthepersonwithdementiaaskedsomeoneto

maketoughdecisionsontheirbehalf.Thisis likelybecausethepersonwithdementiavalued thedecision-maker’sopinion.

• Itisoftenhelpfultothinkaboutdecisionsthepersonwithdementiawouldhavemadeforthemselvesif theyknewwhatlifewithdementiawouldbelike. Thepersonwithdementiamayhaveassumedtheywouldgrowoldanddiesuddenlyintheirsleep.

A promise, in the past, “never to move to a nursing home”• Manyfamiliestalkaboutplansforthefuture

andthisisgenerallyagoodthingbutoftenwedon’tknowwhatthefuturewillbring.Atthetimepromisesweremadeitmayhavebeenimpossibletoimaginethepersonwithdementianeedinghelp24hoursadaytostaysafe.

• Likelythepersonwithdementiawouldnotholdyoutoapromiseiftheyknewthatitmightputbothofyouatrisk.

The feeling that other family members or friends want the person to stay “at home”.• Sometimesanopendiscussionamongfamily

membersmayrevealthateveryoneagreesitistimetoconsideranursinghome.

• Perhapsthepeoplewhofeelthatanursinghomeisnotnecessarydonotknowexactly

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18 19• Ifpossible,itisveryimportantthattheperson

makingthedecisionbesupportedasthisisoftenaverystressfultime.

Media reports of neglect or poor care in nursing homes.• Justasmedicalcarehaschangedoverthe

years,sohavenursinghomes.Therearestrictregulationsthatnursinghomesmustfollow.

• Itisimportanttotaketoursandaskquestionsaboutnursinghomesinyourarea.

• Bycontinuingtovisitthepersonwithdementiayoucanbereassuredthatthepersonisgettingthebestpossiblecare.

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Stories about a person with dementia getting worse after moving into a nursing home.• Themovetoanursinghomeisamajorlife

change.Thisisoneofthereasonsthatitisbetterifthemovedoesnotoccurduringacrisis.

• Becausethemoveisatimeofchangeitcanleadtosomeadditionalconfusionoragitation.Usuallyittakessomeonewithdementiathreemonthstosettleintoanewenvironment.

• Onethingtokeepinmindisthatwhensomeonewithdementianeedsthehelpavailableatanursinghometheyareusuallyinaphaseofdementiathatprogressesmorequickly.Asthedementiacontinuestogetworsewalking,talkingandeatingwillbecomemorechallenging.Thisisnotbecausethenursinghomewasabadchoice.Instead,itisbecausethepersonhasadiseasewhichcontinuestogetsworseovertime.

20 21Somepracticalthingstoconsideraboutamovetoanursinghomeinclude:

• Pets living with the person with dementia: Oftenthepetscannotmovewiththeperson.Itmayreassurethepersonwithdementiaifthereisasafeandhappyplanforthepets.

• Some nursing homes cannot let people smoke:Itmaybeimportanttotalktothefamilyphysicianabout“stop-smokingoptions”includingthenicotinepatchorinhalersthatlookandfeellikecigarettes.Ifthepersonwithdementiacanstopsmokingbeforemoving,thismaymaketheirtransitionmorecomfortable.

• Some decision-makers state they will not move the person with dementia to a nursing home until they are unable to recognize family. Thismayevenhavebeenaninstructionleftbythepersonwithdementiaearlierinlife.Itis,unfortunately,notalways

possibletowaituntilthepersonisnotawareoftheirsurroundings.Dementiaaffectseveryonedifferently.Sometimestheriskoffallsorsleepdisruptionoccursearlierthanproblemswithrecognition.

• Anotherthingtoconsideristhatthetransitiontoanewenvironment(anursinghome)mayactuallybebetterifitoccurswhilethepersoncanstilllearntorecognizesomeofthestaffandroutines.

“24 hour care” at home Itissometimespossibleforapersonwithlatestagedementiatoremainathomeormoveinwithanotherperson(perhapsafamilymember)untildeath.Oftenthisisonlypossibleifthepersonwithdementiaisrelativelycalmanddoesnotrequirealotofphysicalassistance.

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22 23Someofthethingstoconsiderwhenplanningtohavesomeonewithlatestagedementialiveathomeinclude:

• Helpwillberequired24-hoursaday,7daysaweek.Thiswillbeessentialtokeepthepersonwithdementiasafeandhealthy.

• Mostfamiliescannotprovideallthehelpthatisneededtokeepthepersonwithdementiacleanandhealthy.Paidemployees(homecareworkers)willoftenbeneededtohelpcleanthepersonafterabowelorbladdermovementandhelpthepersonmovearoundsafely.

• Everyprovinceisdifferentbutthereisoftenasignificantcostinvolvedinkeepingapersonwithdementiaathome.Inadditiontohiringpeopletohelp,specialequipmentisoftenrequired.Hospitalbedsandequipmentforthestairsmayneedtobepurchasedorrentedasthegovernmentoftenwillnotprovidethese.

• Dependingwhereyoulive,itisoftenhardtofindhomecareworkerswhoarewillingtoworkovernight.Itisimportanttorememberthatthehomecareworkerswilloccasionallycallinsickorgetstuckintraffic.Youwillhavetomakearrangementstoensurethepersonwithdementiagetsthehelpneeded.

Avoiding crisis: The risks of admission to the hospitalInmanyprovincestherearelongwaitinglistsforgettingassessedforhelpathomeandformovingtoanursinghome.Ifthereisnotenoughhelpathomeorifthepeopleprovidingthathelp“burnsout”theonlyoptionmaybeatriptothelocalhospital.

Visitstothehospitalareparticularlyhardonpeoplewithdementia.Ofcoursesometimestripstothehospitalcannotbeavoided.Someofthechallengestoprovidingcaretopeoplewithdementiainthehospitalinclude:

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24 25• Changesintheirday-to-dayroutine

• Rigidtimesforbathing,eatingandtakingmedications

• Loudroomswithmultiplestrangers

• Lessaccesstowaterwhichcanleadtodehydration

• Beinggivensleepingpillsorbeingtieddownsothattheydon’twalkaroundtheunit

Someoftheseproblemswiththehospitalenvironmentcancontributetoamajorchangeinaperson’sthinking.Thisiscalleddelirium.Someofthesymptomsofdeliriuminclude:

• disorientation

• difficultyconcentrating

• beingdrowsy

• seeingthingsthataren’tthere.

Deliriumoftenresultsinlongerstaysinhospitalandcanevenincreasetheriskofdeath.TheCanadianCoalitionforSeniors’MentalHealthhaswrittenabookletcalled“Delirium in Older Adults: A guide for seniors and their families”.Thisisavailableontheirwebsite:www.ccsmh.ca/en/default.cfm#.Thesectioncalled“WhatcanIdotohelpmyfamilymember?”hassomespecificsuggestionsthatareveryhelpfulifahospitalizationdoesoccur.

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26 27

PART 2: Making comfort the priority

Regardlessofwhereapersonwithdementiaisliving,everyone’sgoalisusuallythehappinessandcomfortoftheindividualwithdementia.Asthepersonentersthelatestageofdementia(beingdependentonothersforeating,toiletingandbathing)itmaybetimetoreassessthewaysinwhichwetacklefactorsthatimpacthealthandhappiness.Someofthesefactorsinclude:

• medications • constipation• foodandnutrition • shortnessofbreath• paincontrol • spiritualhealth• skinirritation.

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28 29pillshavebeenstopped.Medicationsthatimprovecomfort,includingthoseforpain,shortnessofbreath,constipationandanxietyshouldlikelybecontinued.

Food and nutritionEatingchallengesareverycommoninlatestagedementia.Peoplewithlatestagedementiawilloften:

• losetheirappetites

• beunabletofeedthemselves

• chokeonfood.

Difficulty swallowing and choking on food usually signals that the person has entered the final phase of their disease. There are a number of things that can be done when eating becomes difficult.

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MedicationsMostpeoplewithlatestagedementiaareonmanymedications.Thesemedicationsandvitaminswerelikelystartedyearsagotohelptreatorpreventspecificdiseasesandprolonglife.Thesemedicationsmaynolongerbeneededandmaybecausingsideeffects.Commonsymptoms,suchasdecreasedappetiteandgenerallyfeelingunwell,areoftenthoughttobepartofgettingolderbutmaybecausedbypills.

Itcanbecomplicatedtosortoutwhichmedicationsarecausingsideeffects.Decisionsaboutchangesinmedicationsshouldalwaysbediscussedwithyourhealth-careteam.Inpeoplewithlatestagedementiaitisreasonableformostofthemedicationstobestopped.Interestingly,thepersonmayactuallyfeelbetterafter

30 31• Medication adjustments:Itiscommonfor

medicationstocauseswallowingproblemsorpoorappetite.Inthelatestageofthedementia,itissometimeshelpfultogiveonlymedicationsthatareneededforcomfort.Youcanrequestareviewofmedicationsbyyourhealth-careteam.

• Continuing to eat: Mostpeoplewithlatestagedementiagetpleasurefromeatinganddrinking.Yourinvolvementcanbeveryhelpful.

- Youcanidentifyfavoritefoods(icecreamforexample).Thesemayincludefoodsthathavebeenavoidedinthepast.Perhapsitisnolongernecessarytobeonarigiddietbecauseofhighcholesterol,bloodpressureordiabetes.

- Patientswithlatestagedementiausuallyneedtobefedbysomeoneelse.Sometimesifyouplanavisitatmealtimeyoucanoffertohelpthestaff.

- Snackscanbeprovidedbetweenmealsanddrinksshouldbeofferedregularlythroughtheday.

- Sometimesadecisionismadetominimizethechanceofchokingbychangingthetextureofthefood.Forexample,thefoodmaybemincedandfluidsmightbethickened.Ifyounoticethatthepersonwithdementiaseemstostronglydislikethechangeintextureitmightbeworthdiscussingthiswithyourhealth-careteam.

• Artificial feeding:Iffoodisnotswallowedproperly,itcangetstuckinthewindpipeorcausepneumonia.Inthistypeofsituation,caregiverssometimesaskabout“feedingtubes”.Thesearetubesinsertedthroughthenoseorthroughtheskinintothestomach.Inpatientswithlatestagedementia,studiesshowthatfeedingtubesdonotprolonglife,improvecomfortorpreventpneumonia.

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32 33Feedingtubesareusuallynotrecommendedastheyhavenotbeenshowntohelpandcancauseharm.Oneofthemostseriousconsequencesoffeedingtubesistheneedtotiedownthepersontopreventthetubefrombeingpulledout.

Pain control Painisnotalwayswellmanagedintheolderadult.Thereisagreaterchancethatpainmaygountreatedforolderadultswithdementia.Oftenthisisbecausethepersonwithdementiacannottellyoutheyareinpain.Signsofpaincaninclude:

• rubbingthepainfulbodypart

• anincreaseinrestlessnessoragitation

• inabilitytosleep

• decreaseorlossofappetite

• stayinginbedornotwantingtowalk

• decreasedabilitytodothingsindependently

• facialgrimacing

• crying,groaningorscreaming.

Someofthetimesduringwhichpainismorecommoninclude:

• firstthinginthemorning

• duringthemorningroutineofbathing,groominganddressing

• aftersittingforlongperiodsoftime

• duringawalk.

Ifyoususpectthepersonwithdementiaisexperiencingpainitisimportanttocontactyourhealth-careteam.Itisgenerallysafetotryahotorcoldpackifsupervised(remember,thepersonwithdementiamaynottellyouthetemperatureistooextreme).Therecanberisksassociatedwithsomeoverthecounterpainmedications.Generally

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34 35• Helpthepersonwithdementiashiftposition

regularlyiftheyareunabletomovethemselves.

• Elevatetheheelsoffthebedbyrollingasoftblanketunderthefeet.

• Bringanynewskinrednessorsorestotheattentionofyourhealth-careteam.

Insomecasesanoccupationaltherapistmaybeaskedtoassessthesituation.Therearemanydifferentskinprotectionproductsavailableincludingspecialcushions,chairsandmattresses.

Constipation Constipationiscommon.Peoplewithdementiamaybeveryuncomfortablefromconstipation.Inseverecasesconstipationcanleadtopain,vomiting,deliriumandsometimesblockage!Factorsthatcanleadtoconstipationinclude:

acetaminophen(TylenolTM)issaferthananti-inflammatorymedicationslikeibuprofen(AdvilTM)orASA(acetylsalicylicacidorAspirinTM)butagain,youshoulddiscussuseofthesemedicationswithyourhealth-careteam.

Skin Irritation Formanyreasons,agingskinismorefragilethanskinonyoungerpeople.Skinrashes,bruising,tearsandsorescanallbeveryuncomfortable.Thereareseveralthingsyoucandotoprotecttheskin:

• Usealcohol–freelotionsfordryandflakeyskin.

• Ensurethatboneypartsofthebodydonotrubagainsthardsurfaces.

• Promptlychangewetorsoiledincontinenceproducts.

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36 37• inadequatefiberinthediet

• notdrinkingenoughwater

• decreaseddailyactivity

• commonlyusedmedications.

Peoplewithdementiamaynotrecognizetheneedtohaveabowelmovement.Thereareanumberofthingsyoucantrytohelpapersonwithdementiahaveregularbowelmovements.

• Takethepersontothebathroomandhelpthemgetreadyforthetoiletfirstthinginthemorningandrightaftereachmeal.

• Watchforsignsthatthepersonmayneedtogotothetoilet.

• Givethepersonaglassofwaterorothernon-caffeinatedbeveragewitheverymealandbetweenmeals.

• Increasethefruit,vegetablesandwholegrainsinthedietifthepersonwithdementiawilleatthem.

• Ifpossible,trygoingforawalktogethertoencouragethebowelstogetmoving.

• Ifbowelmovementsarelessthaneveryotherdayyoushouldlikelytalktoyourhealth-careteamaboutlaxativeoptions.

Shortness of breath • Peoplewithshortnessofbreathworkharderto

breatheandoftenbreathefaster.Therecanalsobesomecoughingoranincreaseinphlegm.Therearemanycausesofshortnessofbreath.Sometimesthereisatreatablecause.Ofteniftheshortnessofbreathkeepscomingbackorisnotgettingbetterwithtreatmentthiscanbeasignthatthepersonisnearingtheendoflife.Itisimportanttotalktoyourhealthcareteamaboutshortnessofbreath.

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38 39Thingsthatmayhelpcomfortsomeonewithshortnessofbreathinclude:

- directingacoolfantowardstheirface

- openingawindow

- changingtheirpositioninbedregularly

- proppingtheirheaduponpillows

- consideringtheuseofahospitalbedwhichcanbeadjustedtoraisetheperson’shead.

Oftenwhenpeopleseesomeonewithshortnessofbreaththeythinktheyneedoxygen.Unlessthereisaspecificlungorheartproblem,oxygenisgenerallynothelpful.Evenwhenthebody’soxygenlevelislow,manypeoplewithdementiawillnotkeeptheoxygenmaskon.

Iftheshortnessofbreathisverydistressingthepalliativecareteammaybeaskedtogivesomeadvice.Palliativecareisaspecialarea

ofmedicinethatfocusesonhelpingseriouslyillpeoplebemorecomfortable.

Comfort from spiritual care Spiritualcareoftenincludesfaithorreligion.Peoplewithdementiahaveaspiritualsidetothemthatoftenreflectspreviousexperiences.Spiritualhealthcanoftenbesupportedby:

• singingorhearinghymns

• attendingreligiousservices

• hearingandsayingfamiliarprayers

• havingfamilyorfriendsvisit

• beinginaquietspace

• holdingorviewingspiritualobjects (forexampleprayerbeads)

• experiencingnature.

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40 41What to expect as late stage dementia progresses: End of life with dementia Currentlythereisnocurefordementia.Dementiaisaterminaldiseasewhichmeansthatitwilleventuallyleadtodeath.

Therearemanyreasonswhyitisdifficulttopredicthowlongsomeonewillliveafterbeingdiagnosedwithdementia.Someofthefactorsthatpredicthowlongsomeonewillliveinclude:

• Duration of dementia symptoms and stage of dementia at the time of diagnosis:Peoplewhoneedhelpeating,bathinganddressingwilllikelynotliveaslongafterdiagnosisaspeoplewithmildersymptomsatthetimeofdiagnosis.

• Type of dementia:Somekindsofdementiagraduallygetworseinarelativelysmooth

decline.Thisrateofdeclinediffersamongkindsofdementia.Otherkindsofdementiacanstaythesameforaperiodoftimethengetworserelativelysuddenly.Forfurtherinformationaboutspecifictypesofdementiatalktoyourhealthcareteam.

• Other medical problems:Peoplewithdementiamayhaveotherdiseasesincludingheartandlungdiseasesthatleadtoanearlierdeath.

Someofthesignsthatapersonwithdementiaisnotexpectedtolivemuchlongerinclude:

• notbeingabletogetoutofbed

• chokingwhenswallowingoreatingverylittle

• repeatedhighfeversorinfectionsincludingpneumoniaorurinarytractinfections

• beingdrowsymoreofthedayandbeinghardertowakeup.

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42 43

PART 3: Decision-making

Who makes the decisions?Peoplewithlatestagedementiaarenolongerabletomakedecisionsabouttheirhealthcare.Althoughthespecificsmayvaryslightlydependingonwhereyoulive,therearesomecommonthingsthatapplytodecision-makingforpeoplewithdementia:

• Themedicalteamwillasktheappointeddecision-makertomakeimportantdecisionsonbehalfofthepersonwithdementia.Thiswilllikelyincludemedicaldecisionsaswellasdecisionsaboutwherethepersonwithdementiashouldlive.

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44 45What decisions will need to be made:

• Living arrangements:Asdiscussedearlier,therecomesatimewhendecisionsneedtobemadeaboutthemostcomfortableandsafestlivingarrangementspossibleforthepersonwithlateandendstagedementia.Peoplewithlatestageandendoflifedementiaarenotabletomakedecisionsforthemselves.Thereareseveraldifferentscenariosthatcanariseatthistime:

- Mostofthetimethepersonwithdementiawillbewillingtoco-operatewiththeplansthatthedecision-makerandthehealth-careteamfeelaremostappropriate.

- Ideally,allthefamilymembersandpeopleinterestedintheperson’swell-beingwillalsoagreewiththeplan.

- Ifthereisdisagreementamongfamilymembersorifthepersonwithdementia

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• Ideally,thepersonwithdementiawillhavehadsomediscussionswiththepersonmakingdecisionsontheirbehalf.

• Somepeoplewithdementiawillhaveanadvancedhealthcaredirectiveor“livingwill”.Thiswilllikelyhelpguidethedecision-making.

• Thedecision-makerissupposedtomakedecisionsthatthepersonwithdementiawouldhavechosen.Thisisnotalwaysthechoicethedecision-makerwouldmakeforthemselves.

• Decision-makingcanbedifficult,especiallyifpeopledisagree.Ifthissituationoccurs,afamilymeetingwiththehealthcareteamisoftenhelpfulsothateveryonehasthesameinformationandunderstandsthesituation.

46 47refusestogoalongwiththeplansbutcannotmakesafedecisions,theofficialdecision-makerwillbeaskedtofinalizethedecision.Thepersondesignatedtomaketheseimportantdecisionscandifferdependingontheprovinceinwhichyoulive.

- Rarely,aformalassessmentwillneedtobedonetodetermineifthepersonwithdementiaissafetomakedecisions.

- Unfortunately,sometimes,whenthepersonwithdementiahasnotsignedofficialdocumentsearlierinlife,itmaybenecessarytogotocourttodecidewhoshouldbemakingthedecisions.

• Cardiopulmonary resuscitation (CPR): Whenapersonisadmittedtoahospitalornursinghome,thedecision-makerisusuallyaskedtodecideaboutCPR.Iftheheartstopsorthepersonstopsbreathing,theteamwillstartCPRunlessthedecisionhasbeenmade

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beforehandtoletnaturaldeathoccur.CPRinvolvesuseofinjectiondrugs,electricshocksandabreathingmachinetoattempttorestarttheheart.Despiteheroiceffortsmostpeoplewithlatestagedementiacannotberevivedormayneverbeabletocomeoffthebreathingmachineintheintensivecareunit. IfthedecisionismadenottoperformCPRwhentheheartstopsbeating,thisdoesnotmeanallmedicaltreatmentwillbedeniedforothermedicalsituations.Forexample,ifthepersonhasaninfection,theywillstillbeofferedantibioticseventhoughtheydonotwantCPR. TherearemanyphrasesusedinthemedicalsystemtodescribethesituationwhereCPRisnotdesiredincluding:

- allownaturaldeath(AND)

- donotresuscitate(DNR)

- nocode.

48 49ThedecisiontoforegoCPRcanalsobechosenforpeoplelivinginaprivatehome.Adoctorcansignanote,whichisoftenputontherefrigeratordoor,tostatethepersondoesnotwantCPR.If“911”iscalled,theambulanceattendantswillneedtoknowthatCPRisnotdesiredassoonaspossible.

• Goals of treatment:Mostpeoplewithdementia,admittedtoanursinghomeorlivingathomesupportedatanursinghomelevelofcare,areinthefinalstagesoftheirlives.Atthisstageitisexpectedthatthepersonmaynaturallydieinthenext6to18months.Atthetimeofadmissionandperiodicallyduringanursinghomestayyoumaybeaskedtodecideonthe“levelofcare”desiredforafewspecificsituationsincluding:

- artificialnutritionandhydration (SeeArtificialfeedingpage31)

- transfertohospitalifanewmedicalconditiondevelops

- antibioticsforinfections.

Regardlessofwherethepersonwithdementiaisliving,youmaywanttoconsiderifthepersonwithlateorendstagedementiawouldhavewantedthefocustobe“comfortcare”ormoreaggressivemedicaltreatmentatthisstageoftheillness.Thehealth-careteamshouldbeabletoprovideyouwithanopinionaboutwhetheradditionalmedicaltestsandtreatmentsarelikelytopromotecomfortorprolonglife.Insomesituations,thepalliativecareteammaybeabletohelpdiscusscaredecisions.

• Autopsy:Anautopsyistheprocessoflookingattheinsideofapersonaftertheydie.Thisisdonebyspeciallytraineddoctorscalledpathologists.Sometimespeoplewith

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50 51dementiawillhaveanautopsyofthebrainandthepathologistwillnotneedtolookattherestofthebody.Someofthereasonswhyanautopsymaybedoneinclude:

- Requestbythepersonwithdementiaearlierinlifeorarequestfromthefamily.

- Ifthereissomedoubtaboutthetypeofbraindiseasethatcausedthedementiaandthereisinterestfromthefamilytoclarifythediagnosis.

- Participationinaresearchstudyeitherbeforedeathoraninterestindonatingthebraintoacollectionofbrains(calleda“brainbank”)fortheuseofresearchersworkingtobetterunderstanddementia.

- Sometimesifdeathisunexpectedorifdeathoccurswithin24hoursoftransfertohospital,thefamilymaybeaskedtoallowanautopsytobedone(thisvariesamongprovinces).

Ifyouorthepersonwithdementiaisinterestedinanautopsyofthebrainitisoftennecessarytomakethesearrangementsaheadoftime.Oftensignatureswillbenecessaryonconsentformstoallowtheautopsytobedone.Everyprovinceandcommunityisdifferent.Theremaybeafeeassociatedwiththeautopsy.Notallcommunitieshaveaccesstobrainbanksfortheuseofresearchers.Ifyouhavefurtherquestionsaboutbrainautopsies,talktoyourhealthcareteam.TheAlzheimerSocietyalsohassomeinformationaboutautopsyonitswebsite: www.alzheimer.ca.

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52 53

Part 4: How life changes for the caregiver

What is your role when someone else is doing the day-to-day caregiving?• “Person-centered care” -Formal(orpaid)

caregiversareoftenveryknowledgeableabouthelpingpeoplewithdementia.Thatbeingsaid,theywillnothavethebackgroundknowledgeyouhaveaboutthepersonwithdementia.Herearesomesuggestionsabouthowyoucanpassonimportantinformationtothecareteam:

- Createalifehistoryposter–Ifyouhavetime,useapieceofposterboardtoorganizesomepicturesandfactualinformationabouttheperson’slifehistory.Thepostercanbe

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54 55

placedonthewallathomeorcanmovewiththepersonintoanursinghome.Thiscangivetheformalcaregiversinformationtoimproveconversationand“person-centeredcare”.

- OutlineabriefLifeStory–Onpages69-72wehaveprovidedquestionsthatcanbecompleted.Thepurposeofthisinformation

istohelppeopleprovidingcaretoseetheapersonasawhole-notasa“dementiapatient”.

- CompleteaSensoryHistory–Onpages73-77wehaveprovidedquestionsaboutpersonalpreferences.Weallknowthethingswelikeandthethingsthatreallyirritateus.Somepeoplelovethesmellofcinnamon;itmakesthemthinkofbigfamilyholidays.OtherpeoplesmellcinnamonandthinkitsmellslikeauntThelma’scat.Byknowingthisinformationaheadoftime,formalcaregiverscanmakechoiceswhicharemorelikelytobeenjoyedbythepersonwithdementia.

• Advocacy–Mostofthetimecaregiverspaidtocometothehomeorworkinginanursinghomearetryingtheirbesttoprovidegoodcare.Oftentheywillaskforyouropinionabouthowthepersonwithdementiacanbemade

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56 57morecomfortable.Itisimportanttorememberthatyoucontinuetohaveavoice.Somevenuesforexpressingyouropinionsinclude:

- scheduledfamilyconferences

- residentandfamilycouncils

- informaldiscussionswithstaff.

• Education – Youwilllikelyhavelearnedalotaboutdementiathroughyourexperiencesoverthelastfewyears.Ifyoufeelable,youmayfinditrewardingtosharesomeofyourknowledgeandexperiencewithotherpeopletryingtohelpsomeonewithdementia.Thereareanumberofwaysinwhichyoumaysharethisimportantinformationincluding:

- Peoplewhoknowaboutyourjourneymayaskyouquestions.Inadditiontoanypersonalsuggestionsyoumayhave,itisoftenhelpfultosuggesttheycontactthelocalAlzheimerSocietyofficeorgotothewebiteatwww.alzheimer.ca.

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- Ifyoufeelcomfortablesharingyourexperienceswithothers,youcouldconsidercontactingyourlocalAlzheimerSocietyofficetoseeiftheyhavevolunteeropportunities.Peoplewithreal-lifeexperience,areespeciallyhelpfulintheAlzheimerSocietysupportgroups.(Remember,theAlzheimerSocietyhelpspeoplewithallkindsofdementia!)

The emotional roller-coaster of the later stages of dementiaNoonecanpredicthowtheywillfeelasthepersonwithdementiamovesthroughthelaterstagesofdementia.Thisisalmostalwaysatimeofdramaticchangesforeveryoneinvolved.Thesechangesmayhaveseemedgradualormayhavehappenedmorerapidlythanexpected.Nomatterhowmuchyouattemptedtoprepareforthefuturebyreadingorattendingeducationsessions,

58 59thereareboundtobethingsyoudidn’texpect.Thiscancausequiteavarietyofmixedemotionsincluding:

• Anger-Itisnotuncommontohaveperiodsduringwhichyoumaybeangry.Thisangermaybefocusedonaspecifictarget,suchasanegativeincident,ormaybemoregeneral.Oftenitisimportanttoconsciouslythinkaboutwhatismakingyouangrysothatitdoesn’ttakeoveryourlife.

• Relief -Theremaybetimes,duringthelaterstagesofdementia,whenyouexperienceasenseofrelief.Thisisnotinappropriateorunusual.Bothyouandthepersonwithdementiahavebeenthroughalong,hardjourney.Othersmaynotunderstandorhavethesamereaction.Thatdoesnotmakeyourfeelings“wrong”.

• Boredom -Ifyourlifehasbeenvery“tiedup”withactivitiestokeepthepersonwith

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dementiacomfortableandsafe,youmaynowhavesometimeinyourschedulethatyouhavenothad,perhapsforyears.Ifthisisthecaseyoumaywanttoconsideractivitiesavailableinyourcommunity.Exercisingthemindandbodycanhelpyouadapttochangesinyourlife.

• Loneliness–Overtheyears,yoursocialnetworkmayhavechangeddramatically.Sometimesfriendsandfamilyhave“pulledaway”becausetheywereuncomfortablebeingaroundthepersonwithdementiaor“didnotwanttobotheryou”.Youmayhavebecomeveryinvolvedwithsupportgroupsandyourcontactwiththesegroupsmaybewindingdown.Youmayloseyourcloserelationshipswithhomecareworkersorwithnursinghomestaff.Youwillbethebestjudgeofhowmuchtimeyouwanttospendwithothersbutthismaybeatimeforyoutoreachouttofriendsandsayyouareinterestedingettingtogether.

60 61• Grief-Manypeoplefeelasenseofgrief,

evenwhilethepersonwithdementiaisstillalive.Thiscanstartatanystageofdementiabecausegriefisthewayweexperiencewhatwehavelost.

• Sadness–Itisperfectlynormaltohaveperiodsoftimeduringwhichyouaresadanditisnotunusualtocryduringthesetimes.Unfortunately,it’snotalwayspossibletoschedulethesetimesofsadnesstooccurintheprivacyofyourownhome.Don’tbealarmed.Thepeoplearoundyouarelikelytobeveryunderstandingiftheyknowaboutthedramaticchangesthathavebeenoccurringinyourlife.

• Depression -Thereisatimewhengriefandsadnesstakeoverandthisisatimewhenitisimportanttotalktoyourownhealth-careteamabouttheemotionsyouareexperiencing.Someofthesymptomsofdepressioninclude:

- lossofappetite

- dramaticchangesinsleep (toomuchortoolittle)

- lossofinterestandenjoyment

- wishingyoucoulddie.

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62 63What support is available for caregivers?Asdescribedabove,someofthechangesthatoccurinthelaterstagesofdementiacandramaticallychangethesupportsystemsyouhavereliedoninthepast.Thesupportsavailablemaydifferdependingonwhereyoulivebutthereisalwaysacombinationofcasualandformalsupportavailabletohelpyouthroughthistimeoftransition.Herearesomesuggestions:

• Friends and family–Regardlessoftheirinvolvementupuntilnow,friendsandfamilymaybejustwhatyouneed.Moreoftenthannotfriendsandfamilyarehappywhenyoucallbecausetheyhavebeenthinkingofpickingupthephonethemselvesbutdidn’tknowwhattosay.

• Alzheimer Society of Canada– TheAlzheimerSocietyofCanadaprovidesface-to-faceandtelephonesupporttoanyonewhomakescontactwiththem.Theyhelpwithallkindsofdementia.“It’snotjustforAlzheimer’sdisease!”Dependingonwhereyoulive,theremayalsobesupportgroupsorganizedbythelocalAlzheimerSocietyforpeoplewhoknowsomeonewiththelaterstagesofdementia.Youcancallyourlocalofficetofindoutwhattheyofferorgoonlineatwww.alzheimer.ca.

• Online communities–Thesedaysoneofthemostpopularwaystogetsupport,intheprivacyofyourownhome,istojoinanonlinesupportgroup.Thisisoftendonewithoutsharingpersonaldetailslikenamesandaddresses.Youshouldneverhavetoshareanyfinancialinformationsuchascreditcardnumbersorsocialsecuritynumbersto

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64 65

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join.Theseonlinesupportgroupsmaybeparticularlyhelpfulifyouliveinaruralareaorifyouwantmoreinformationaboutoneoftherarerformsofdementia.

• Nursing home family councils –Ifthepersonwithdementiahasmovedtoanursinghometheremaybeagroupthatgetstogethertodiscussvarioustopics.Thesegroupsmaybeawaytogettoknowthepeopleyouarepassinginthehallswhenyouvisit.Askthestaffatthenursinghomeifsuchagroupexists.

• Spiritual care-Somepeopleareconnectedtoaspiritualorreligiouscommunity.Itmayhavebeensometimesinceyouwerelastabletoregularlyattendactivitieswithyourfaithcommunity.Thismaybeatimetoreconnectwithyourspiritualsideorperhapsthiswouldbeanewventureforyou.Regardlessofthedegreetowhichyouareinterestedin

participatinginorganizedactivities,addressingyourspiritualneedsmayhelpyouadjusttothedramaticchangesthathavebeenoccurringinyourlife.

• Your health-care team–Therearetimeswhenfriends,familyandsupportgroupscanhelpyouadjusttothechangesoccurringinyourlife.Itisimportanttorememberthatyoumayneedtoinvolveyourhealth-careteam.Ifyouarefeelingunwell,areexperiencingsymptomsofdepression(seepage60)orhavenotmadetimeforyourown“check-up,”itisimportantforyoutoscheduleanappointmentwithyourfamilyphysicianorprimaryhealth-careteam.

66 67

Part 5: Additional information

Therearemanyonlinesourcesofinformation.Wehighlyrecommendthese:

• The Alzheimer Society of Canada

- www.alzheimer.ca

• Lewy Body Dementia Association

- www.lbda.org

• National Institute on Aging: Caring for a Person with Alzheimer Disease

- www.nia.nih.gov/Alzheimers/Publication

• Comfort Care AT THE END OF LIFE FOR PERSONS WITH ALZHEIMER’S DISEASE OR OTHER Degenerative Diseases of the Brain

- www.expertise-sante.com/guide_arcand_caron

• Encouraging Comfort Care: A Guide for Families of People with Dementia Living in Care Facilities

- www.alzheimers-illinois.org/pti/comfort_care_guide.asp

• The Canadian Coalition for Seniors’ Mental Health: “Delirium in Older Adults: A guide for seniors and their families”.

- www.ccsmh.ca/en/default.cfm#.

Otherwrittenresourcesrecommendedinclude:

• Caring for your loved one. An education guide for caregivers of persons with dementia. BaycrestCenterforGeriatricCare.2ndCanadianEdition.

• The 36-Hour Day.NancyMaceandPeterRabins.WarnerBooks,2006.

• A Caregiver’s Guide to Lewy Body Dementia. WhitworthandWhitworth.demosHEALTH2010

• Caring for a Loved One with Alzheimer’s Disease. A Guide for the Home Caregiver. JohnsHopkinsMedicine,2010.

68 69Thefollowingwereusedinthepreparationofthisbooklet:

• Reaching Out to the Spiritual Nature of Persons With Dementia www.baylor.edu/content/services/document.php/60623.pdf

• Caring for Patients with terminal Alzheimer’s Disease. LadislavVolicer.TheCanadianReviewofAlzheimer’sDiseaseandOtherDementias.

• PATH: A New Approach to End-of-life Care. MoorhouseandMallery.TheCanadianReviewofAlzheimer’sDiseaseandOtherDementias.

• Counseling the Alzheimer’s Caregiver. AResourceforHealthCareProfessional.Mittelmanetal.AMAPress,2003.

• New Brunswick Association for Spiritual Care. www.nbasc.ca

Appendix 1 Life Story (Fillinthepartsthatareapplicable.)

Mynameis....................................................................................

Mostofmy friendscallme..............................................................................

Iwasbornon..................................in.........................................

Igrewupin.....................................................................................

andcamefromafamilyof..................................................

Imetmyspouse.........................................................................

Imarried..................................on.....................................................

Ihave.................children.Theirnamesare:.....................

...................................................................................................................

...................................................................................................................

..................................................................................................................

Ihave.................grandchildrenand.................greatgrandchildren.Theirnamesare:....................................

...................................................................................................................

...................................................................................................................

..................................................................................................................Website addresses current as of March 2013.

70 71 PeopleIregularlyseeortalkaboutinclude:.........

...................................................................................................................

...................................................................................................................

...................................................................................................................

IwouldlikeyoutoknowIhadmanyinterestswhichincludedthefollowing:...........................................

...................................................................................................................

...................................................................................................................

Myfavoritethingstodoinmychildhoodwere:...................................................................................................................

...................................................................................................................

Myfavoritethingstodoasanadult(includehobbies):..........................................................................................

...................................................................................................................

...................................................................................................................

Myfavoritetypesofbooksandmusicare:..........

...................................................................................................................

...................................................................................................................

ThisiswhatIliketodotorelax:.....................................

...................................................................................................................

...................................................................................................................

Myfavoritethingsare:..........................................................

...................................................................................................................

..................................................................................................................

Iworkedmostofmylifeas:..............................................

...................................................................................................................

......................................................................................................

Ibelongedtovariousgroups,committees,volunteerwork,thatincluded:......................................

...................................................................................................................

..................................................................................................................

Myspiritualbeliefsincluded:.............................................

...................................................................................................................

...................................................................................................................

Threeaccomplishments/successes/achievementsthatIammostproudofare(considerincludingeducation,certificates,coursesetc.):.............................................................................

...................................................................................................................

..................................................................................................................

Ihavehadthesepetsovertheyears:........................

...................................................................................................................

..................................................................................................................

72 73Otherthingsyoushouldknowaboutmeinclude:(Pleaseconsiderincludingmilitaryservice.Isyourmilitaryservicesomethingyouliketotalkabout?)....................................................................

...................................................................................................................

...................................................................................................................

...................................................................................................................

...................................................................................................................

...................................................................................................................

...................................................................................................................

...................................................................................................................

Pleaseindicatebelow:

r YES,Igiveconsentforthisinformationtobesharedwiththepeoplearoundmesotheyknowmoreaboutme.

r NO,Idonotgiveconsentforthisinformationtobesharedwiththepeoplearoundme.

Signatureofpatientorsubstitutedecision-maker:

......................................................................................................................

Date: ........................................................................................................

Appendix 2 Sensory Preferences

Favorite smells:examplesincluderoses,pine,seaair,foods,soapsandperfumes,laundrydetergent.......................................................................

...................................................................................................................

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Disliked smells:examplesincludespecificfoodscooking,soapsandperfumes ..........................

....................................................................................................................

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Favorite foods:examplesincludesweets,saltysnacks,coldorwarm(icecreamvs.oatmeal).............................................................................................

...................................................................................................................

...................................................................................................................

Disliked foods:examplesincludespecificflavorslikecurry,cinnamon,fish ....................................

...................................................................................................................

...................................................................................................................

Favorite food textures:examplesincludecrunchy,chewy,drinkingthroughastraw,drinkswithorwithoutice,milkshakethickness...................................................................................................................

...................................................................................................................

74 75I like to have something in my mouth: examplesincludechewinggum,peppermints,toothpick,strawofhay,cigarette..................................

...................................................................................................................

...................................................................................................................

.........................................

Preferred background noise:examplesincludefavoritetypesofmusic,naturesounds,quiet,talkradio ............................................................................

...................................................................................................................

..................................................................................................................

What volume is preferred? ...........................................

...................................................................................................................

...................................................................................................................

Favorite TV/radio shows: ..............................................

...................................................................................................................

...................................................................................................................

Disliked background noise:examplesincludespecifictypesofmusic,television,quiet...................................................................................................................

...................................................................................................................

Room temperature preference: ..............................

...................................................................................................................

What clothes are usually worn inside: examplesincludeT-shirt,vest,long-sleeveshirtwithbuttonsorwithout,sweater,shoes,slippers ...............................................................................................

...................................................................................................................

Favorite fabrics: (wool,silk,cotton,polyester,roughtextures,fuzzytextures) ...............

...................................................................................................................

...................................................................................................................

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Disliked fabrics: ......................................................................

...................................................................................................................

...................................................................................................................

Other: .................................................................................................

...................................................................................................................

...................................................................................................................

76 77Level of personal contact:(pleasecircle)

Enjoyholdinghands orapatonshoulder? .....................................Yes No

Havinghairbrushed? ......................................Yes No

Havingfaceorhandlotionputon? .....Yes No

Massage? ...............................................................Yes No

Favorite resting position:examplesincluderockinginachair,reclininginaLazyBoy,sittinginafirmchair,lyingdowninbed...................................

...................................................................................................................

...................................................................................................................

Preferred level of activity:walking,dancing,rocking,beingstill,changingposition .......................

...................................................................................................................

...................................................................................................................

Something in the hands? examplesincludearosary,cigarette,cellphone...................................................................................................................

...................................................................................................................

...................................................................................................................

Night time routine:

Normalbedtime...........................................................................

...................................................................................................................

Beforebedroutine....................................................................

...................................................................................................................

Pajamas/nightdress/other.................................................

...................................................................................................................

Sheetstuckedinorloose ...................................................

Weightofblankets ....................................................................

Morning routine: Timeofwaking............................................................................

Timeofgettingoutofbed ..................................................

Breakfast? Yes No

Bathing routine: Shower,bath,other ..................................................................

Preferredsoapsorotherproducts .............................

...................................................................................................................

AdaptedfromLifeHistoryandSensoryPreferenceSurvey,

TracyMcGrathBPE,Recreationtherapist

78 79

80

Ifyouhavenoticedgradualchangesinmemoryandthinking,itmaybehelpfultoreadaboutdementia.Astimegoesbyyouwilllikelyhavenewquestions.TheDementiaTrilogyisasetofthreebookletsaboutdementia.

Feedback about The Dementia Trilogy— “Most noteworthy is the manner in which they were written: in simple language made easy to understand… the information provided has given us the power we need to face the future together.” Marie C.

Later in the Dementia Journeyprovideshelpfulyetsensitiveinformationtohelpfocusoncomfortinthelaterstagesofdementia.

The Dementia Compassofferssometipstohelpapersonwithdementiawiththeirday-to-dayactivities.Italsodescribessomepersonalitychangesthatcanbesymptomsofdementia.

An Introduction to Dementialiststheearliestsignsofdementia.Ithelpsanswersomeofthemorecommonquestionslike,“WhatisthedifferencebetweendementiaandAlzheimer’sdisease?”