Quality in Practice Committee

Dementia: Diagnosis and Management in General PracticeAUTHORSDr Tony Foley Professor Greg Swanwick

Original Publication: 2014

Next Review Date: 2017

DISCLAIMER AND WAIVER OF LIABILITYWhilsteveryefforthasbeenmadebytheQualityinPracticeCommitteetoensuretheaccuracyoftheinformationandmaterialcontainedinthisdocument,errorsoromissionsmayoccurinthecontent.ThisguidancerepresentstheviewoftheICGPwhichwasarrivedataftercarefulconsiderationoftheevidenceavailableattimeofpublication.

Thisqualityofcaremaybedependentontheappropriateallocationofresourcestopracticesinvolvedinitsdelivery.Resourceallocationbythestateisvariabledependingongeographicallocationandindividualpracticecircumstances.Thereareconstraintsinfollowingtheguidelineswheretheresourcesarenotavailabletoactioncertainaspectsoftheguidelines.Thereforeindividualhealthcareprofessionalswillhavetodecidewhatisachievablewithintheirresourcesparticularlyforvulnerablepatientgroups.

Theguidedoesnothoweveroverridetheindividualresponsibilityofhealthcareprofessionalstomakedecisionsappropriatetothecircumstancesofindividualpatientsinconsultationwiththepatientand/orguardianorcarer.

Guidelinesarenotpolicydocuments.Feedbackfromlocalfacultyandindividualmembersoneaseofimplementationoftheseguidelinesiswelcomed.

EVIDENCE-BASED MEDICINEEvidence-basedmedicineistheconscientious,explicitandjudicioususeofcurrentbestevidenceinmakingdecisionsaboutthecareofindividualpatients.

Inthisdocumentyouwillseethatevidenceandrecommendationsareattributedalevelofevidence(Level1–5)usinganadaptationoftherevisedOxfordCentre2011LevelsofEvidence.

LEVELS OF EVIDENCELevel 1: Evidenceobtainedfromsystematicreviewof

randomisedtrials

Level 2: Evidenceobtainedfromatleastonerandomisedtrial

Level 3: Evidenceobtainedfromatleastonenon-randomisedcontrolledcohort/follow-upstudy

Level 4: Evidenceobtainedfromatleastonecase-series,case-controlorhistoricallycontrolledstudy

Level 5: Evidenceobtainedfrommechanism-basedreasoning

ICGP QUALITY IN PRACTICE COMMITTEE 2014• DrPaulArmstrong• DrPatriciaCarmody• DrMaryKearney• DrSusanMacLaughlin• DrNiamhMoran• DrMariaO’Mahony• DrMargaretO’Riordan• DrBenParmeter• DrPhilipSheeranPurcell• DrPatrickRedmond

ACKNOWLEDGMENTSGPleadauthorDrTonyFoleywouldliketothank:

• DrMicheálHynes,GP,Kinsale,andMemberofKinsaleCommunityResponsetoDementia(KCoRD).

• DrMariaO’MahonyoftheQIPCommittee.• MembersofKCoRD.• Genio,theAtlanticPhilanthropiesandtheHSEfor

supportingKCoRD.• HiswifeJoanneandchildren,Lucy,JennyandDan

© ICGP May 2014

QUALITYINPRACTICECOMMITTEE–Dementia: Diagnosis and Management in General Practice

TABLE OF CONTENTS

1 Introduction 1

1.1 Background1.2 AimsoftheDocument1.3 KeyPoints

2 Diagnosing Dementia 2

2.1 TypesofDementia2.2 Thehistory2.3 Physicalexamination2.4 Investigations2.5 MedicationReview2.6 Cognitiveassessment2.7 SpecialistInput&MemoryClinics

3 The Initial Management of Dementia 5

3.1 Disclosure3.2 Educationalsupport3.3 Community-basedhealthservices3.4 Community-basedsocialservices3.5 Pharmacotherapy3.6 RegularReview

4 Behavioural and Psychological Symptoms of Dementia (BPSD) 8

4.1 TheAssessmentofBPSD4.2 TheManagementofBPSD

5 Driving and dementia 10

6 Legal Issues 11

6.1 Capacity6.2 Enduringpowerofattorney6.3 Wardofcourt6.4 Advancecaredirectives

7 Advanced dementia 13

7.1 Thenursinghome7.2 Palliativecare

References 15

Appendix 18

1: DementiaResources

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Section 1: Introduction

1.1 BackgroundDementiaisasyndromecharacterisedbyprogressivecognitiveimpairmentandisassociatedwithimpairmentinfunctionalabilitiesandinmanycases,behaviouralandpsychologicalsymptoms(1).

Theremaybememorylossusuallyrelatedtoshorttermmemory,communicationdifficulties,changesinpersonalityormoodandproblemswithspatialawareness.Theabilitytoperformactivitiesofdailylivingindependentlymayarise,withinstancessuchasforgettingthenamesofcommonobjects,timesandplaces,missedappointmentsandissuesarounddrugadherence.

Dementiaprevalenceisrising.IrelandispredictedtohavethelargestgrowthintheolderpopulationofallEuropeancountriesinthecomingdecades(2).In2009,therewereanestimated41,700peoplelivingwithsomeformofdementiainIreland.Itisexpectedthatthisfigurewillriseto147,000by2041(3).TheaverageGPdiagnosesoneortwonewpatientswithdementiaeachyearandwillhave12to15patientswithdementiainanaveragelistsize(4).Primarycaredementiaworkloadwillinevitablyincreaseasourpopulationages.

Fromaglobalburdenofdiseaseperspective,dementiacontributestoagreaternumberofyearsspentlivingwithadisabilityinpeopleovertheageof60yearsthanstroke,cardiovasculardiseaseorcancer(5).

CalculationssuggestthatthecurrentcostofdementiacareinIrelandis€1.69billionperannum(3).Thereisasignificantsocialcostforfamiliesandcarerstoo.Dementia,however,continuestolagbehindotherchronicdiseasesintermsofbudgetallocationandintheshareofresourcesdevotedtoresearchonthetopic,particularlyrelativetodiseaseburden(3).

GeneralPractitionersareoftenthefirsthealthcareprofessionalstobeconsultedwhendementiaissuspectedbypatientsortheirfamilies.Earlyrecognitionisnoteasybecauseoftheinsidiousandvariableonsetofsymptoms.Confirmationofthediagnosiscantakeupto4years(6).IrishGPsexperiencedifficultyindiagnosinganddisclosingadiagnosisofdementiatotheir

patientscitingdifficultiesdifferentiatingnormalageingfromsymptomsofdementia,lackofconfidenceandconcernsabouttheimpactofthediagnosisonthepatient(7).

StudiesofGPlearningneedshavehighlightedtheneedfordementiaeducation,inparticulararoundareasincludingthediagnosis,assessmentofcarers’needs,qualitymarkersfordementiacareingeneralpractice,andassessmentofmentalcapacity(7).

Currentnationalandinternationaldementiapolicyadvocatesapatient-centredapproachenablingpersonswithdementiatostaylivingathomeforaslongaspossible(6).

TheIrishGovernmenthasgivenacommitmentintheProgrammeofGovernmentfor2011-2016todevelopandimplementaNationalStrategyforDementia.Thiswillbepublishedin2014.

1.2 Aims of the DocumentTheaimofthisdocumentistoprovideanoverviewofcurrentguidelinesandclinicalevidenceinthemanagementofdementiaingeneralpractice.Morespecifically,itsobjectivesaretoexplorethekeyareasarounddementiadiagnosis,disclosure,managementandsupportofpatientsandtheirfamilies.

1.3 Key Points • Dementiaprevalenceisrisingwithresultantincreasein

generalpracticedementiaworkload.• Timelydiagnosisandearlyinterventionisadvocatedby

clinicalguidelinesandnationalstrategies.• Amultidisciplinaryapproachtothediagnosisand

managementbenefitspatientswithdementia.• Educationofpatients,familiesandcarersandactivation

ofsocialsupports,voluntaryandnon-voluntaryagenciesshouldfollowdiagnosis.

• Antipsychoticsshouldbeusedwithcautionanduseshouldbereviewedatregularintervals.

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Section 2: Diagnosing Dementia

TimelydiagnosisofdementiahasbeenrecognisedaskeyintheimprovementofdementiaservicesandissupportedbyclinicalguidelinesandnationaldementiastrategiesacrossEurope(8)(9).Timelydiagnosisenablesplanningforthefuture,theinvolvementofrelevantsupportorganisationsandmayhelptorelievethepsychologicaldistressexperiencedbycaregivers(10).InpatientswithdementiawhohaveAlzheimer’sdiseasethereisthepotentialforusingcholinesteraseinhibitorstomodifysymptomsanddelaytheneedtoseeknursinghomecare.Earlydisclosureofthediagnosisseemstobewhatpeoplewithdementiawanttohave(11).

However,thehazardsofearlyrecognitionarewellrecognizedtooandmayincludeanincreaseinfalsepositiverates,patienttraumaonreceivingthediagnosis,stigmatization,overloadingofspecialistservices,under-treatmentofconditionssuchasdepressionandconflictwithinfamilies(12).Thereisalsoariskthatthisfocusonearlydiagnosisignoresthelackofcapacitywithinprimarycaretodealwiththedemandsgeneratedbythispolicy.

Dementiaisaclinicaldiagnosismadewhenacquiredcognitivedeficitsinmorethanoneareaofcognitioninterferewithactivitiesofdailylivingandrepresentadeclinefromapreviouslyhigherleveloffunctioning(13).Dementiaisoftenprecededbyaperiodofmildcognitiveimpairment(MCI)inwhichtherearecomplaintsandobjectiveimpairmentsinoneormorecognitivedomainsbutwithpreservationofactivitiesofdailyliving(14).Young-onsetdementiaisconventionallyconsideredtoincludepatientswithonsetofdementiabefore65yearsofage(15).

2.1 Types of DementiaThetermdementiareferstoagroupofsyndromescharacterizedbyaprogressivedeclineincognitivefunction.Over200subtypeshavebeendefined.

Themainsub-typesofdementiaincludeAlzheimer’sDisease(AD),VascularDementia(VaD),DementiawithLewyBodies(DLB),fronto-temporaldementia,andMixedDementias.ThesearebrieflydescribedinTable1.

Othersub-typesincludeParkinson’sDiseaseDementia,AlcoholRelatedDementia,Huntington’sDiseaseandPrionDisease(includesClassicalCreutzfeldt-JakobDisease).

Identificationofdementiasub-typeisimportantbecausedifferenttypesofdementiawillhavedifferentcourses,withdifferentpatternsofsymptoms,andcanresponddifferentlytotreatments.

Table 1: Summary of the Main Subtypes of Dementia (13) (16)

ALZHEIMER’S DISEASE:

Estimated50%ofcasesofdementia.

Symptomsinclude,

1. Cognitivedysfunction-includesmemorylossandlanguagedifficulties,

2. Behaviouralandpsychologicalsymptoms-e.g.apathy,depression,hallucinations,delusions,agitation

3. Difficultieswithperformingactivitiesofdailyliving

Theaveragesurvivalperiodforpatientsfollowingdiagnosisis8to10years.

VASCULAR DEMENTIA

Estimated25%ofcasesofdementia.Onsetmaybeabruptortheremaybeperiodsofsuddendeclinefollowedbyrelativestability.Patientsmaypresentwithsignsofstrokeorothervascularproblems,forexample,ischaemicheartdiseaseorhypertension.Physicalproblemssuchasdecreasedmobilityandbalanceproblemsaremorecommonlyseeninpeoplewithvasculardementia(VaD)thaninpeoplewithAlzheimer’sdisease.

DEMENTIA WITH LEWY BODIES

Estimated15%ofcasesofdementia.Characterizedbyfluctuationofawarenessfromday-to-dayandsignsofparkinsonismsuchastremor,rigidityandslownessofmovementorpovertyofexpression.Visualhallucinationsordelusionsoccurfrequently.Fallsarealsocommon.ApproximatelythreequartersofolderpeoplewithParkinson’sdiseasedevelopdementiaafter10years.

FRONTO-TEMPORAL DEMENTIA

Representsasignificantproportionofpeoplewhopresentwithdementiaundertheageof65.Pick’sdiseaseisincludedinthissubtype.Changesinbehavioursuchasdisinhibition,lossofsocialawarenessandlossofinsightaremuchmorecommonthanmemoryproblems.Disturbanceofmood,speechandcontinencearefrequent.Theremaybeaninsidiousdeclineinlanguageskills,knownasprimaryprogressiveaphasia.Apositivefamilyhistoryofdementiaisnotuncommon.

MIXED DEMENTIAS

Mixturesoftwoormoreoftheactivedementiascanbefoundinthesameperson,withoneorotherusuallydominating.Rigidboundariesbetweensubtypesofdementiamaybeundulyartificial.

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Thetimebetweensymptomdevelopmentanddiagnosisischaracterizedbyuncertaintyforpeoplewithdementiaandtheirfamilies.TheaccuratediagnosisofdementiaisachallengeforbothGPsandspecialists.Inapan-Europeanstudy,theaveragelengthoftimebetweensymptomrecognitionandformaldiagnosisbeingmadeis20months(17).

Recognitionofanemergingdementiasyndromeisdependantupon:

• HistoryTaking-includingthepatient’sreportandacollateralhistory

• PhysicalExamination• AppropriateInvestigations• MedicationReview• CognitiveAssessment• Specialistinput–forcomplexcases(e.g.uncertaintyabout

diagnosis,risktoselforothers,comorbidities,complexpsychopharmacology)

2.2 History TakingSpecificattentionshouldbepaidtomodeofonset,courseofprogression,patternofcognitiveimpairmentandpresenceofnon-cognitivesymptomssuchasbehaviouraldisturbance,hallucinationsanddelusions.Acollateralhistoryfromarelativeorcarerisessentialasapersonwithdementiamaynotbeabletogiveafullyaccuratehistory.

Thedifferentialdiagnosisneedstobeconsidered.Treatablecausesofcognitiveimpairmentincludedepression,hypothyroidismandcertainvitamindeficiencies.

Delirium,atransientusuallyreversibleacuteconfusionalstate,developsoverashortperiod(hourstodays)andfluctuates;insuchcasesasearchforanacutemedicalcauseisrequired.

2.3 Physical ExaminationThefocusofthephysicalexaminationshouldbeoncardiovasculardisease,neurologicalsigns,sensoryloss,andtheexclusionofanypossiblereversiblecausesofcognitivedeclineordelirium.

2.4 Appropriate InvestigationsRelevantinvestigationstoperformareincludedinTable2.

Table 2: Investigations for Dementia (18)

INVESTIGATIONS IN PRIMARY CARE

Bloods–FBC,ESR,U&E,TFTs,Glucose,Lipids,Calcium&B12:(todetectco-morbidconditionssuchasanaemiaduetoB12deficiencyorrenaldisease)andtoexcludereversiblecauses(e.g.hypothyroidism).SyphilisserologyandHIVtestingisnotroutinelyrecommended,unlesspatientsareconsideredatrisk.

Generalmedicalinvestigations:

• ChestX-RayandMSUifclinicallyindicated• ECG(Cholinesteraseinhibitorsmayinducesinus

bradycardiaandaggravatepre-existingsinusnodediseaseandAVblock)

INVESTIGATIONS IN SECONDARY CARE

• CTScan(toexcludeintracraniallesions,cerebralinfarctionandhaemorrhage,extraandsubduralhaematoma,normalpressurehydrocephalus)

• MRIScan(asensitiveindicatorofcerebrovasculardisease)

• Single-photonemissiontomography(toassessregionalbloodflow)anddopaminescantodetectLewyBodydisease.

• Carotidultrasound(iflargevesselatherosclerosissuspected)

• EEGsarenotpartofroutineworkup.

2.5 Medication ReviewManydrugsmaycausecognitiveimpairment.Inavulnerablepatient,somemedicationsaremorecommonlyassociatedwithconfusion.SeeTable3.

Table 3: Medications Associated with an Increased Risk of Confusion (19)

• Anticonvulsants–allanticonvulsantsimpaircognitivefunction

• Antidepressants–riskshighestintricyclics.Withdrawaldeliriumalsooccurs

• Antipsychotics–thosewithconsiderableanticholinergicactivitymayworsendelirium

• Anti-parkinsonian drugs–riskhighestinthosewithanticholinergicactivity

• Cardiac drugs–includingdigoxinandcalciumantagonists

• Corticosteroids–riskisdoserelated• Hypnotics/Sedatives–morecommonwithlong-acting

benzodiazepines• Opioid analgesics–riskhighestwithpethidine

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2.6 Cognitive AssessmentCognitivefunctiontestingaddsfurtherevidencetotheclinicalassessmentandinvestigations.Thereareanumberofvalidatedcognitivescreeningtoolsusedingeneralpractice.Apatient’sperformancemaybeaffectedbyeducationalability,language,hearingandculture.Resultsoftestingshouldbeincludedinreferralstosecondarycare(20).

Over50%ofGPsusetheMMSEbecauseofavailabilityandprofessionalhabit.AbriefoverviewofcommonlyusedscreeningtoolsisgiveninTable4.

Table 4: Cognitive Screening Tools in Primary Care (21) (22) (23)

Mini-Mental State Examination (MMSE)–DevelopedbyFolstein,itisthemostcommonlyusedtoolinGeneralPractice.TheMMSEmeasuresorientation,immediatememory,attentionandcalculation,recall,variousaspectsoflanguageandvisuo-spatialskills.However,scoresmaybedifficulttointerpretanditshowsage,culturalandeducationalbias.Scoredoutof30,ascoreof<24suggestsdementia.Itmaytakeupto20minutestocompleteandsomaybelesspracticalforprimarycare.TherearecopyrightrestrictionsontheuseoftheMMSE.TheMMSEcanbepurchasedfromPAR,Inc.bycalling(813)968-3003.

*General Practitioner Assessment of Cognition (GPCOG)–Thisisa6-itemcognitivescreeningtool,specificallydesignedforuseinprimarycare.Taking5minutestocomplete,itappearstoperformwellwithintheprimarycaresettingandispsychometricallyrobustandfreeofeducationalbias.Itincludestimeorientation,aclockdrawingtask,reportofarecenteventandawordrecalltask.http://www.patient.co.uk/doctor/general-practitioner-assessment-of-cognition-gpcog-score

**Mini-Cognitive Assessment Instrument (Mini-Cog)-Abriefscreeningtooldesignedforprimarycareuse,itassesses2aspectsofcognition–short-termrecallandclockdrawing.Ittakes3-5minutestocompleteandperformscomparablytotheGPCOG,alsobeingfreeofeducationalbias.http://geriatrics.uthscsa.edu/tools/MINICog.pdf

***Memory Impairment Screen (MIS)–Thisisa4-itemassessmenttestthattakesapproximately4minutestocomplete.TheMISisespeciallyappropriateforusewithethnicminorities,asitdoesnotshoweducationalorlanguagebias.http://nationalmemoryscreening.org/secure/12/nmsd/Screening%20Tools/2012-MIS.pdf

Abbreviated Mental Test Score (MTS)–Thisisawell-established10-itemscreenthatsamplesvariouscognitivedomains.Thereareonlyverbalitems.Orientation,long-termmemory,recognitionandshort-termmemoryareassessed.http://www.patient.co.uk/doctor/abbreviated-mental-test-amt

Six Item Cognitive Impairment Tool (6CIT)–Designedforprimarycareuse,thistakesapproximately5minutestocomplete.Allitemsareverballybased.Orientation,short-termmemoryandattention/concentrationareassessed.http://www.patient.co.uk/doctor/six-item-cognitive-impairment-test-6cit

Threewell-conductedsystematicreviewsofcognitivescreeningtestsinprimarycarehavecomparedthepropertiesofscreeningtoolsinuse.Theyconcurredthatthebestthreetoolsforuseinprimarycarewerethe*GPCOG,the**Mini-Cogandthe***MIS(21)(22)(23).Theywerefoundtobepractical,feasible,havewideapplicabilityandwerepsychometricallyrobust.

2.7 Specialist Input & Memory Clinics Thediagnosisofdementiausuallyresultsfollowingseveralconsultationsandtheassemblyofcorroborativeevidence.GPshavebeenfoundtobeasproficientasmemoryclinicsatmakingthediagnosis(24).However,identifyingthesub-typeofdementiaremainsataskforamultidisciplinarygroup.Furthermore,structuralimagingshouldbeusedintheassessmentofpeoplewithsuspecteddementiatoexcludeothercerebralpathologiesandtohelpestablishthesubtypediagnosis.ThisaccuratediagnosisandsubtypinghasbecomemoreimportantwiththeadventoftreatmentsspecificallyforAlzheimer’sDisease,andbecauseoftheneedtoavoidthepotentiallyseriousside-effectsofantipsychoticuseinpeoplewithLewybodydementia.

Whereavailable,referraltoaspecialistservicesisthereforepreferableforconfirmationofthediagnosis,exclusionofotherpathologies,subtypingofthedementiaandtailoringoftreatmentstothespecificdementiasubtype(16).ThedecisiononwhethertoreferforaspecialistopiniontoOldAgePsychiatry,Gerontology,NeurologyoradedicatedMemoryClinicisdependantuponresourcesthatareavailablelocally.

Memory Clinics Assessmentofcognitionisusefulinboththeinitialanddifferentialdiagnosisofdementia.Furtherneuropsychologicalassessmentperformedbyspecialistmultidisciplinaryteamsshouldbeusedinthediagnosisofdementia,especiallyinpatientswheredementiaisnotclinicallyobvious(13).Memoryclinicsareincreasinglybeingestablishedasspecialistcentresforsuchassessments.

Neuropsychologicaltestingalsoaidsinthedifferentialdiagnosisofdementia.Theprovisionofneuropsychologyservicesisvariableandinplacesnon-existent.NeuropsychologicaltestinghelpstodistinguishbetweenADandotherage-associatedneurodegenerativedisorders(25).

NationalDementiaStrategiesinEnglandandFrancehavehighlightedtherolethatMemoryclinicsplayintheearlydiagnosisofdementia(26)(27).MemoryClinicsinIrelandarenotavailableineveryHSEarea.Thereisconsiderablevariabilityacrosstheseclinicsinrelationtothetypeofserviceonofferandhowsuchservicesareresourcedandfinanced.Someemployafullcomplementofalliedhealthprofessionalswithemphasisbothondiagnosisandfollow-upsupports,whilstothersdonot.Afewemploytheirownneuropsychologists,whilstmanydonothaveimmediateaccesstothisservice.Thesespecialistservicesappeartobehighlyvaluedbybothpatientsandfamilycaregiversbecauseoftheopportunitiestheyaffordforin-depthdiscussionabouttheillnessandprognosis(28).

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Section 3: The Initial Management of Dementia

3.1 DisclosureThemajorityofpeoplewithmilddementiawishtoknowtheirdiagnosisanditisgenerallyrecommendedthatallGPsdiscussthediagnosiswiththepersonwithdementia,unlessthereareclearreasonsnottodoso.Thedisclosureofthediagnosisofdementiarequiresasensitiveindividualizedapproach.GPsfindthisdisclosuredifficult,however,notconveyingthediagnosisandtheuseofeuphemismaddstouncertaintyforpatientsandtheirfamilies.IrishdisclosureratestopatientsrankpoorlywithdisclosurepracticesadoptedincountriessuchastheUKandNorway(7).Considerabletimeisneededwiththepersonwithdementia,andifthepersonconsents,withtheirfamily.Bothwillneedon-goingsupportandthismayneedtobeachievedoveranumberofconsultations.Thereisanincreasedriskofdepressioninnon-professionalcarersofpeoplewithdementia(29).

Manyquestionsariseforpatientsandfamilymembersfollowingthediagnosisofdementia.KeyareastobeconsideredareincludedinTable5.

Table 5: Information Needs Arising from Diagnosis (18)

Offer the person with dementia and their family information about:

• Signsandsymptoms,courseandprognosis• Localcareandsupportservices,localinformationand

voluntaryorganisations• Pharmacotherapy• Medico-legalissues,includingsourcesoffinancialand

legaladviceandadvocacy• Driving

TheAlzheimer’sSocietyofIrelandproducesusefulpublicationsforpatientsandcarersaboutfinancial,legalandcareplanningaswellaspracticaltipsforcopingwithmemoryloss;http://www.alzheimer.ie/About-Us/Publications.aspx.

Patientsandtheircarersmayalsobeentitledtoarangeofbenefits,suchasCarer’sBenefitandRespiteCareGrants.InformationisavailablefromtheHSEonthese;http://www.hse.ie/eng/services/list/4/olderpeople/benefitsentitlements/

Detailsonfurthereducational,legal,financial,andserviceresourcesareavailableinAppendix1,attheendofthisdocument.

3.2 Educational SupportAcquiringadiagnosisofdementiaissometimessaidtoexposea‘caregap’,wherepeopleareleftwithaclinicaldiagnosisbutwithlittletonousefulsupport(12).Thisisrecognizedasoneofthehazardsofearlydiagnosis.Onceadiagnosisisreceivedpeoplewithdementiaandcarersindicatetheirdifficultyinaccessinginformation,navigatingthehealthandsocialcaresystemandthelackofsuitableservicesandsupports(30).

GPsarewellplacedtoprovideeducationandtosignpostsupportsavailabletopersonswithdementiaandtheirfamilies.

Informationshouldnotonlyincludeissuesconsideredrelevantbyclinicians,butshouldbetailoredtomeettheemergingneedsofpatientsandcarers(10).

Manypeoplewithearlydementiaretainsomeinsight,canunderstandtheirdiagnosisandshouldbeinvolvedindecision-making.Patientsandcarersshouldbeprovidedwithinformationabouttheservicesandinterventionsavailabletothematallstagesofthepatient’sjourneyofcare.

Educationalmaterialisavailablefromanumberofsources,listedinAppendix1.

3.3 Community-Based Health Services GPsarehighlyregardedbyfamiliesofpeoplewithdementiabecausetheyprovidecontinuityofcare,haveestablishedrelationshipsoftrust,actasadvocatesandproblem-solversandtheyopenthegatestoothersourcesofhelp(29).GPsarecrucialinthedevelopmentofcarepathwaysastheyareusuallythefirstpointofcontactfortheindividualorforfamilymembersworriedaboutthesignsandsymptomsofdementiaandarewellplacedtoreferpatientsandfamiliestosuitablesupportsandservices.

However,GPshaveidentifiedalackofknowledgeoflocalhealthandsupportorganisationsasakeylearningneedintheircareofpatientswithdementia(31).Theuncertaintyaboutreferralcriteriaandtheinsufficientsupportsandservicesforthosewithdementia,greatlyaffectpost-diagnosticcareprovision.Servicesofferedmaybefragmented,poorlycoordinated,inflexibleandinequitable.Thisprovisionofinformationaboutavailablesupportsiscrucial.

AVisionforChange,thereportfromtheexpertgrouponmentalhealthpolicy,advocatesthatprimarycareteamsshouldplayamajorroleintheintegratedcareofpatientswithdementiaandshouldworkinacoordinatedmannerwithGPsandspecialistteamstoprovidehighqualitycareafterdiagnosis(32).KeymembersoftheprimarycareteamwhomaycontributetothecareofapatientwithdementiaareincludedinTable7.

InformationoncommunitybasedhealthservicesincludingDayCareCentres,CommunityHospitals,CommunityInterventionTeams,TheHomeCarePackageandTheNursingHomeSupportSchememaybefoundontheHSEwebsite;http://www.hse.ie/eng/services/list/4/olderpeople/tipsforhealthyliving/dementia.html

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Table 7: The Primary Care Team and Dementia (3)

Public Health Nurses (PHNs) ThePHNmayhavearoleintheassessmentandmanagementofpeoplewithdementiaandreviewingtheneedforsupports.Theyactasthegatekeeperstoothercommunitycareservicessuchashomehelp,mealsonwheels,day-careandotherrespitecare.

Occupational Therapists (OTs) OTsareconcernedwiththecareofthewholeperson;theiremphasistendstobeonactivitiesofdailyliving,includingdressing,eatingandgrooming.Theirmainaimistorestoreandreducethedeclineintheperson’sfunctionalability.Theymayalsohavearoletoplayinassessingsuitabilityforassistivetechnology.

Physiotherapists Theirmainaimistomaximisetheperson’sabilitiesregardingmobilitytoallowthegreatestlevelofindependencepossible.Theyhaveanimportantroletooinfallsrisk-assessment.

Speech and Language Therapists (SALTs) SALTsfocusonimprovingqualityoflifebymaximisingcommunicationabilityandcognitivefunction.Theyalsoassessswallowandadviseregardingfoodanddrinkconsistency.

Social Workers Theyhaveanimportantroletoplayinneedsassessment,inadvisingpeopleabouttheirserviceentitlement;inprotectingtherightsofpeoplewithdementiaandsafeguardingthehealthandwelfareofprimarycaregivers.

3.4 Community-Based Social Services TheAlzheimerSocietyofIreland(ASI)isamajordementia-specificserviceproviderinIreland.Itprovidesarangeofservicesandsupportsthroughoutthecountry,includingtheAlzheimernationalhelpline,adementiaadvisorservice,familycarersupportgroups,socialclubs,Alzheimercafesandrunstrainingcoursesforfamilymembers.FurtherASIsupportsincludehomecareservices,respitecentresandday-carecentres.TheASIisinvolvedindementiaadvocacy,fund-raisingandresearch,detailsatwww.Alzheimer.ie.

TheCarersAssociationisavoluntaryorganisationforfamilycarersinthehomeandadvocatesonbehalfofcarers.Italsoprovidesinformation,educationandsupportforfamilycarers,detailsatwww.carersireland.ie.

Thereareanumberofprivateserviceprovidersofferinghomecareandnursingcare.TheHSEprovidesalistofpreferredprovidersontheirwebsitewww.HSE.ieorontheirhelpline1850241850.

Arangeoffinancialsupportsmaybeavailabletopatientswithdementiaandtheirfamilies.TheCitizensInformationServiceprovidesfulldetailsofthesepaymentsandhowtoapplyforthem,on1890777121orontheirwebsitewww.citizensinformation.ie.

3.5 PharmacotherapyMedicationmanagementindementiausuallyfocuseson2keyareas.

1. DrugsforAlzheimer’sDisease.

2. Themanagementofbehaviouralandpsychologicalsymptomsofdementia(BPSD)

Ofparticularimportanceistheregularreviewandmonitoringofallmedications,asindicatedinTable3.

Drugs for Alzheimer’s Disease:a. Cholinesterase Inhibitors

InADtherearemultipleneurotransmitterabnormalitiesbutmostprominentarecholinergicwithreducedactivityofcholineacetyltransferase,AChEIsactbyincreasingcholinergictransmissionviainhibitionofthebreakdownofacetylcholine.

TheNICEGuidelinerecommendsthethreeAcetylcholinesteraseinhibitors(AChEIs)donepezil,rivastigmineandgalantamine,asoptionsformanagingmildtomoderateAlzheimer’sdisease(18).EvidencehasshownthatAChEIsareofsomebenefitintermsofimprovementsincognition,ADLandbehaviouralsymptoms(33).Effectsizesaremodest.

SeverityisfrequentlydefinedbyMiniMentalStateExamination(MMSE)score:

• MildAlzheimer’sdisease:MMSE21–26• ModerateAlzheimer’sdisease:MMSE10–20• ModeratelysevereAlzheimer’sdisease:MMSE10–14• SevereAlzheimer’sdisease:MMSElessthan10

However,theNICEguidelinefurtherexplainsthatwhenassessingtheneedforAChEItreatment,cliniciansshouldnotrelyoncognitionscoresaloneincircumstancesinwhichitwouldbeinappropriatetodoso(18).Thesecircumstancesincludeifthecognitionscoreisnotaclinicallyappropriatetoolforassessingtheseverityofthatpatient’sdementia.Adecisionontheinitiationandmaintenanceofmedicationsshouldbemadeontherapeuticandclinicalgrounds.

ThemostcommonadverseeffectsofAChEIsaregastrointestinal,involvingnausea,vomiting,diarrhoeaandabdominalpains.Theseeffectsoccurmostcommonlyoninitiationandup-titrationofthedosageandareusuallytransient.Adverseeffectsmaybereducedoravoidedbyincreasingthedoseslowlyorbytakingthemedicineafterfood.PatientswhodonottolerateoneAChEImaytolerateanother.

RandomizedcontrolledtrialshaveshownbenefitsofAChEIsindementiawithLewybodies(DLB)andParkinson’sdiseasedementiaalso(33).AChEIsarenotrecommendedforthetreatmentofcognitivedeclineinVascularDementiaormildcognitiveimpairment(18),howevermanypatientsinclinicalpracticehavebothAlzheimer’sdiseaseandcerebrovascularpathology(34).

Treatmentshouldbecontinuedonlywhenitisconsideredtobehavingaworthwhileeffectoncognitive,global,functional

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orbehaviouralsymptoms(18).Theuseofanticholinergicsandcholinomimetics(e.g.neostigmine,pyridostigmine)shouldbeavoided(19).

Discontinuingcholinesteraseinhibitorsmayleadtoworseningofcognitivefunctionsandgreaterfunctionalimpairmentascomparedtocontinuedtherapy(35).Whenadecisionhasbeenmadetodiscontinuetherapybecauseofaperceivedlackofeffectiveness,thedoseshouldbetaperedbeforestoppingthetreatmentandthepatientbemonitoredoverthenext1-3monthsforevidenceofobservabledecline.Ifitoccursconsiderationshouldbegiventoreinstatingtherapy(35).

b. Memantine

Memantineisanon-competitiveN-methyl-D-aspartatereceptorantagonist(NMDA).OverstimulationoftheN-methyl-D-aspartate(NMDA)receptorbyglutamateisimplicatedinneurodegenerativedisorders.

Memantinemaybeconsideredastheperson’sdementiaprogresses.ItisrecommendedforthemanagementofmoderateAlzheimer’sdiseaseforpatientswhoareintolerantoforhaveacontraindicationtoAChEIsandforsevereAlzheimer’sdisease(18).Itmaybeusedaloneorincombinationwithcholinesteraseinhibitors(36).Itisgenerallywelltoleratedalthoughcommonundesirableeffectsaredizziness,headache,constipation,somnolenceandhypertension(37).

WhenprescribingbothAChEIsandmemantineguidelinesadvisethattreatmentshouldbeinitiatedandsupervisedbyaphysicianexperiencedinthediagnosisandtreatmentofAlzheimer’sdisease(18).

3.6 Regular ReviewNeedsandmanagementstrategieswillchangeasthedementiaprogresses.Themediansurvivalofpeoplewithdementiadiagnosedataged60-69yrsis6.7years(interquartilerange3.1-10.8years),fallingto1.9years(interquartilerange0.7-3.6years)forthosediagnosedatage90yrsorover(38).Oncethe

diagnosisismade,thesupportneedsofpatientsandcarersshouldbecarefullyassessed.Thiswillneedtoberepeatedoverintervalsasneedschange.Thequalityofcareprovidedtopatientswithdementiacanbeimprovedbyfocusingonkeyareasatthisregularreview(39).ThesearelistedinTable6.

Table 6: Areas for Discussion at Regular Review (18) (39)

• Medications–includinguseofantipsychotics• MentalHealth–includingscreenfordepression• SocialCare• AssessmentofCarer’sNeeds

Regularphysicalexaminationshouldfocusonhearing,vision,nutrition,bowelandbladderfunction(40).

Inthelaterstagesofdementiadentalhygienemaybepoor,leadingtogumdisease,toothdecay,infectionanddifficultyeating.Dentalreviewbothearlyandthroughouttheillnessmayhelptoaddresstheseproblems(41).

Immunisationguidelinesrecommendfluvaccineadministrationforresidentsofnursinghomesandlongstayinstitutions,aswellasinpersonsaged65yearsandover(42).

Alongwiththisregularreview,ariskassessmentshouldbeperformed,inordertodetectrisktoselforothers.Thismayincludeassessmentof:

• Inadvertentself-harme.g.kitchenaccidents,medicationmistakesetc.

• Deliberateself-harm.• Riskstootherse.g.driving,gunownership,aggression,

child-mindingwhenlosingabilitytodososafelyetc.• Elderabuseandvulnerability-Abusivebehaviourbyfamily

carerstowardspeoplewithdementiaiscommon,withathirdreportingimportantlevelsofabuseandhalfsomeabusivebehavior(43).

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Section 4: The Behavioural and Psychological Symptoms of Dementia (BPSD)

BPSDisageneraltermusedtodescribearangeofbehaviouralandpsychologicalsymptomsexperiencedbypatientswithdementia.

BPSDmaybegroupedinto

• Behaviouralsymptomsidentifiedbypatientobservation,suchasaggression,agitation,wandering,sexualdisinhibitionandrestlessness.

• Psychologicalsymptomsassessedoninterviewingpatientsandcarers,includinganxiety,depression,hallucinationsanddelusions.

PeoplewithdementiaaremorelikelytobereferredforspecialistassessmentwhenBPSDisidentified.ThemajorityofpeoplewithdementiawillexperienceBPSDatsometime,particularlyinthemiddle andlaterstages(44).

4.1 The Assessment of BPSDTheassessmentofBPSDshouldincludeathoroughhistoryfromthepatient,familyandcarerswithcarefulconsiderationofthefollowing(45)(18):

• theperson’sphysicalhealth,includingpain,infectionandconstipation.Needtoconsiderandruleoutdelirium.

• theperson’smentalhealth,includingdepressionandanxiety• side-effectsofmedication(especiallythosewitha

psychotropiceffect)• premorbidpersonality,individualbiography,including

religiousandculturalidentity• psychosocialfactors• physicalenvironmentalfactors

4.2 The Management of BPSDGuidelinesurgenon-pharmacologicalmanagementforBPSD(18).Inpractice,completeresolutionofBPSDmaybeverydifficulttoachievewithnon-pharmacologicalinterventions,asavailabilityoftherapiesmaybelimitedandthephysicalenvironmentmaynotbeoptimal.ArecentIrishstudyfoundthat32%ofpatientsinanursinghomewereonanantipsychoticmedicationwhichisbroadlyinlinewithsimilarstudiesintheUK(46).

a. Non-Pharmacological Management of BPSD (45)(18)

• DefineBPSDtreatmenttargets,e.g.reliefofpsychoticsymptoms,safecontainmentofwandering

• Educatepatients,familiesandcarers• Optimisetheenvironment• Treatpain,infection,constipation• Considernon-medicationtherapies,dependingon

availability:• PhysicalactivityandRecreationalactivities• Multisensorystimulation,e.g.aromatherapy,massage,

lighttherapy,musictherapy

• Realityorientationtherapy• Validationtherapy

b. Pharmacological Management of BPSD

(i) Antipsychotics

TherehasbeenincreasingconcernregardingthesafeuseofantipsychoticsforBPSD,withsignificantlyincreasedriskofstrokeanda1.7timesincreasedriskofall-causemortality,comparedwithplacebo(47).AntipsychoticsarefrequentlyprescribedforthemanagementofBPSD;however,themainlicenseduseforantipsychoticsisforthetreatmentofschizophreniaorbipolardisorderwherethereisapsychosis(48).AreviewoftheevidenceshowsthatantipsychoticshavealimitedpositiveeffectinthemanagementofBPSDandmaycauseconsiderableharm(48).

Adverseeffectsofantipsychoticsincludeover-sedation,acceleratedcognitivedecline,gaitdisturbance,involuntarymovements,Parkinsonism,neurolepticmalignantsyndrome,cardio-toxicityandotherthromboembolicevents.

Olderpeoplewithdementia,especiallythosewithcoexistentcomorbidities,aremoresensitivetotheadverseeffectsofantipsychotics.Researchhasshownthatantipsychoticscanbesafelywithdrawninpeoplewithdementiawhohavetakenthemforprolongedperiods(49).Antipsychoticprescribingshouldbetime-limitedandreservedforsevereanddistressingsymptomsaftercarefulassessmentoftherisksandbenefitsoftheiruseandconsiderationofthetypeofdementia(16).

InseverecasesofBSPD,whenallothermanagementoptionshavebeenexhaustedandwhenthesafetyofthepatientorcaregiverisatrisk,antipsychoticusemaybejustified.Thelowestpossibletherapeuticdoseshouldbechosen,withslowtitrationandregularreviewandaplanmadetoreviewandconsiderdiscontinuingtreatmentwherepossible,aftersixweeks(45).Theriskofadverseeffectsshouldbediscussedanddocumentedwithpatients,familiesandcarers.

Risperidoneistheonlyantipsychoticmedicationlicensedforuseinpatientswithdementia(50).Itslicenseindicatesthatitshouldbeusedfornolongerthansixweeksbeforerevieworspecialistreferral.Acardiacriskassessmentisrecommendedpriortoinitiation,asantipsychoticsmayprolongtheQTcintervalleadingtoarrhythmia,evenattherapeuticdoses.Astartingdoseof0.25mgbdisrecommendedtitratingslowly,toamaximumdosageof1mgbd.Side-effectrisksareincreasedonhigherdoses.Theevidencebaseforalternativeantipsychoticsincludingquetiapine,aripiprazoleandolanzapineislimited(50).

(ii) Other medications for BPSD (46)(51)

• Antidepressants–shouldbeconsideredifevidenceofdepressionoranxiety.Tricyclicsshouldbeavoidedasantimuscarinicactivitymayleadtoaworseningofcognitiveimpairment.

• CholinesteraseInhibitorsandMemantine–MaybeofsomebenefitforthesymptomsofBPSD.

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• Hypnotics–Maybeoflimitedbenefit,especiallyfornight-timedisturbance.Howeverincreasingtoleranceandadverseeffectsincludingoversedation,confusion,agitationandrisksoffallsneedstobeconsidered.

• ValproateandCarbamazepine–Insometrialscarbamazepinehasbeenfoundtoreduceagitation,restlessnessandanxietyhowevertheefficacyandtolerabilityoflongtermuseofthisdrugisyettobeestablished(52).

PsychoactivemedicationprescribedtotreatBPSDshouldbereviewedatregularintervalsandattemptsmadeatdrugwithdrawalwhenclinicallyappropriate.

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Section 5: Driving and Dementia

Drivingisanimportantlifeskilltomostpeopleenhancingindependenceandfreedom.Itisacomplicatedtaskthatrequiresacombinationofcomplexthoughtprocessesandmanualskills.

Someonewhoisdiagnosedwithmildcognitiveimpairmentorearlydementiamaybeabletocontinuedrivingsafelyforsometime,retaininglearnedskills.Howeverdementiamayaffectdrivingabilitybyimpactingonperception,attention,judgmentandimpulsiveness.Certainmedicationsincludingsedativesandantidepressantsmayaffectdrivingabilityalso.

ArecentlypublisheddocumentbytheRoadSafetyAuthorityprovidesguidanceonmedicalfitnesstodrive(53).Italsooutlinestherolesandresponsibilitiesforpatients,healthcareprofessionalsandtheDrivingLicenseAuthority.ThedementiaspecificguidelinesaresummarizedinTable8.

UpondiagnosisofdementiathedrivermustnotifytheDrivingLicenseAuthority.Theyarealsoobligedtonotifytheircarinsurancecompany(53).

Healthcareprofessionalshaveanethicalandpotentiallylegalobligationtogiveclearadvicetopatientsincaseswhereanillnessmayaffectsafedrivingability(53).Ifindoubtaboutthepatient’sabilitytodrive,referraltoafurtherspecialistandassociatedmulti-disciplinaryteam(i.e.physiotherapy,occupationaltherapy,psychology,optometrist)and/oron-roadtestingwithadrivingassessorqualifiedtoassessdrivingamongthosewithdisabilitiesmaybeofassistance.

Table 8: Dementia and Driving Guidelines (53)

MILD COGNITIVE IMPAIRMENT (MCI)

WherethereisnoobjectiveimpairmentoffunctionMCIdoesnotneedtobenotifiedtoDrivingLicensingAuthority.WherethereisobjectiveimpairmentoffunctionorspecifictreatmentisrequiredthenthedoctorshouldclarifythecauseandapplytherelevantsectionofSláinteagusTiomáint.

DEMENTIA OR ANY ORGANIC BRAIN SYNDROME

Itisextremelydifficulttoassessdrivingabilityinthosewithdementia.Thosewhohavepoorshort-termmemory,disorientation,lackofinsightandjudgmentarealmostcertainlynotfittodrive.Thevariablepresentationsandratesofprogressionareacknowledged.Disordersofattentionwillalsocauseimpairment.Adecisionregardingfitnesstodriveisusuallybasedonspecialistmedicalassessment,furtherassessmentbyoccupationaltherapyand/orneuropsychology,withalowthresholdforanon-roaddrivingassessment.Inearlydementiawhensufficientskillsareretainedandprogressionisslow,alicensemaybeissuedsubjecttoannualreview.Aformaldrivingassessmentmaybenecessary.Driver must notify Driving Licensing Authority

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Section 6: Legal Issues

Oneoftheadvantagesoftimelydiagnosisisthatitmaygiveanindividualtheopportunitytomakeplansforthefuturewhilehe/sheretainsthecapacitytodoso.ForGPsthemostcommonlegalundertakingindementiacareinvolvesassessmentofthepatient’slegalcapacitytomakeawill(testamentarycapacity).GPsarealsoaskedtoassesspatients’capacitytograntanenduringpowerofattorney(EPA).

6.1 Capacity TheGovernment’sAssistedDecisionMaking(Capacity)Bill2013waspublishedinJuly2013proposingamodernlegalframeworkforpeoplewithimpairedcapacityinIreland(54).IfenactedinitscurrentformitwillreplacetheLunacyRegulationActof1871.

Seehttp://www.oireachtas.ie/documents/bills28/bills/2013/8313/b8313d.pdf.

TheBillseekstointroducetheconceptofdecision-assistanceandco-decisionmaking,whichwillrequiretheinvolvementofanotherperson(a‘decision-makingassistant’ora‘co-decision-maker’).Themostlikelypersontofulfilltherolewillbeacarerorfamilymember.Thiswillprovideaccessforpersonswithimpairedcapacitytothesupporttheymayrequireinexercisingtheirlegalcapacity.Animportantprovisionfromacarer’sperspectiveistheallowanceforan“informaldecision-maker”tomakedecisionsinrespectof‘personalwelfare’(includinghealthcareandtreatment)(55).

Capacityreferstoaperson’sabilityinlawtomakeadecisionwithlegalconsequences,andtherelevanttestdependsonwhatdecisionthepatientistryingtomake.

Allpersonsareconsideredtohavecapacity,unlessprovenotherwise.Peoplemaysufferfromtransitorylossofcapacity.The“test”shouldberevisitedandreconsideredasappropriate.Theassessmentofcapacityistaskspecific.Itfocusesonthespecificdecisionthatneedstobemadeatthespecifictimethedecisionisrequired.Oneoftherelevantfactorstobeconsideredistheeffectofthedecisionbeingmade.Forexampleifasignificantirrevocabledecisionisbeingconsideredtheresultingresponsibilityattachingtothepractitionerinassessingcapacityisgreater.Incapacitytomanageone’sfinancialaffairsdoesnotnecessarilyimply,forexample,incapacitytoconsenttoclinicaltreatment.

Apersonisconsideredunabletomakeadecisionforhimselforherselfifoneormoreofthefollowingcriteriaaremet.He/sheisunableto:

• Understandtheinformationrelevanttothedecision• Retaintheinformation• Useorweightheinformationaspartoftheprocessof

makingthedecision• Communicatehisorherdecision(whetherbytalking,

usingsignlanguageoranyothermeans)(56)

Testamentarycapacityrelatestoaperson’scapacitytomakeawill.Anoldandtestedlegalauthorityontestamentarycapacity

isthejudgmentinthecaseofBanksvGoodfellow.ThetestfortestamentarycapacityisoutlinedinTable9.

Table 9: Assessing Testamentary Capacity: The Tests (56)

What the testator (the person making the will) must be capable of understanding:

• Thenatureandeffectofmakingawill• Theextentofhisorherestate• Thefactthatthosewhomightexpecttobenefitfrom

thetestator’swill(boththosebeingincludedin,andbeingexcludedfrom,thewill)mightbringaclaim

What the testator should not have:

• Amentalillnessthatinfluencesthetestatortomakebequests(dispositions)inthewillthatheorshewouldnototherwisehaveincluded

BeforeassessingtestamentarycapacityaGPshouldinsistonaletterofinstructionfromthepatient’ssolicitorconfirmingthatthepatienthasconsentedtoexaminationbytheGPanddisclosureoftheresultstothesolicitor(57).

Anexplanationshouldbegiventothepatientthatthisisanexaminationforlegalpurposes,nottheusualdoctor-patientconsultation.Findingsofamentalstateexaminationincludingthepatient’sappearance,behaviour,mood,formandinsightmayberecorded.AnMMSEmaybeperformedandrecordedbutthisisformedicalrecordsanddoesnotneedtoappearonyouropinionforthesolicitor,butitwillinformyouropinion(58).AnswerstothequestionsmentionedaboveinTable9,shouldberecordedinasdetailedafashionaspossible.

OtheressentialcomponentsofacertificateofmentalcapacityareincludedinTable10.

Table 10: Information to include in a Certificate of Mental Capacity (57)

• Identificationofself• Identificationofthesubject• Thedate,timeanddurationandbasisfortheexamination• Thediagnosis• Theopinionandthegroundsfortheopinion• Thepart/partieswithwhomtheopinionwillbeshared/

passed

Ifindoubtaboutcapacity,asecondopinionshouldbesoughtfromanoldagepsychiatristorotherrelevantlyexperiencedprofessional.Wherecapacitytomakeawillislacking,thismayleadtoreversiontoanearlierwillorthepatientdyingintestate.

AsummaryoftheprocessofassessingtestamentarycapacityisgiveninTable11.

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Table 11: Process for Assessing Testamentary Capacity (57)

• Getaletterfromthesolicitordetailinglegaltests• Setasideenoughtime• Assess(inthestandardway)whetherthepatienthas

dementia• CheckthatthepatientunderstandseachoftheBanksv

Goodfellowpoints(Table9)• Recordthepatient’sanswersinasdetailedamanneras

possible• Checkfacts,suchastheextentoftheestate,withthe

solicitor• Askaboutandreviewmaterialchangesfromprevious

wills,suchaswhypotentialbeneficiariesareincludedorexcluded

6.2 Enduring Power of Attorney (EPA). APowerofAttorneyisadocumentappointinganagent.AnOrdinaryPowerofAttorneyisautomaticallyrevokedduringtheperiodofincapacityofthedonor(andisobviouslyrevokedcompletelyonthedeathofthedonor).

AnEnduringPowerofAttorneyisonemadebyapatientatatimewhentheyhavefullcapacityappointingsomeperson,usuallyamemberoftheirfamilybutsometimestheirsolicitor,tomanagetheiraffairs.TheformofPowerofAttorneyisastatutoryformandrequiresthedonor’ssolicitoranddoctortoconfirmthattheyaresatisfiedthatthepatienthascapacity.AnEnduringPowerisnoteffectiveuntilithasbeenregisteredanditcannotberegistereduntilthepatienthaslostcapacity.Itisthereforelessopentoabuseandthedutyofcaretoassesscapacityisatthelowestendofthescale.IdeallythestatementofcapacityshouldbesignedassoonaspossibleafterthesigningoftheEnduringPowerbythepatientbutmustbesignedwithin30days

ThelegaltestforanEPAisthatthedonorunderstandsthattheAttorneywillbeabletoassumeauthorityovertheiraffairs

• oncethedonorbecomes“incapable”and• oncetheEPAisregistered,thereafterthepoweris

irrevocable.

AnAttorneyhasthepowertomakedecisionsrelatingtoproperty,financialandbusinessaffairsofthedonor,ordecisionsregardingthepersonalcareofthepatient.Theycannotmakedecisionsinrelationtomedicaltreatment.TheAssistedDecisionMaking(Capacity)Bill2013seekstoaddressthisdeficiency.

AGPmaybeaskedtoevaluatewhethertheirpatienthasthecapacitytomakeanenduringpowerofattorney.ThepatientmustnotifyatleasttwopersonsoftheEPA.Whenthedonorbecomes“incapable”theAttorneyappliestohavetheEPAregisteredsothatitcancomeintoforce.

6.3 Ward of Court. TheproceduresdescribedbelowregardingWardshipwillbechangediftheAssistedDecisionMaking(Capacity)Bill2013isimplemented.

IfitistoolateintheadvancementofdementiaforapersontograntanEPA,thenanapplicationtotheHighCourtmightbeconsideredtohavethepersonmadeaWardofCourt.Ifthepersonhasbeendeclareda“Wardofcourt”thenallconsentissuesmustbedirectedtotheOfficesoftheWardofCourtandinatimelymanner.

Thewardofcourtprocedureallowsforthefinancialaffairsandpropertyofapersonwithoutcapacitytobedealtbyanappropriate“committee”.

Thisisanexpensive,cumbersomeandlengthyprocess.Ittendstobeusedonlywherethepersoninvolvedhassubstantialfinancialassets.

FurtherinformationonWardshipisavailablefromTheOfficeofWardsofCourts@www.courts.ie

6.4 Advance Care Directives• Researchindicatesthatadvancecareplanningmay

improveendoflifecare,patientandfamilysatisfaction,andalsoreducesstress,anxiety,anddepressioninsurvivingrelatives(59).GPsmayhavearoleindiscussingadvancedecisionsbeforebeingdrafted,explainingtheadvantagesanddisadvantagesofrefusingorchoosingmedicalproceduresinadvance.

• Anadvancecaredirective/livingwillseekstopermitapatienttoparticipate/informinclinicaldecisionmakingaftertheyhavelostthepowertocommunicatetheirpreferencesorviewsand/orhavebecomeclinicallyincompetent(60).Itmayemergeinthecontextofmentalillnessorend-of-lifedecisionmaking.

• TheLawReformCommissionhasrecommendedthatadvancecaredirectivesbemadelegallybindinginIreland(61).TheAssistedDecisionMaking(Capacity)Bill2013ifenacted,willaddressthisarea.

• Tobeeffectiveanadvancedcaredirectivemustbeinwriting,signed,dated,witnessedandcertifiedbyamedicalpractitionerthatthepatienthasthecapacitytodrafttheadvancedirective.

FurtherusefulinformationonadvancecaredirectivesforpatientsisavailablefromTheIrishHospiceFoundationatwww.thinkahead.ieandinthepublication‘LetMeDecide’(62).

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Section 7: Advanced Dementia

7.1 The Nursing HomeDementiaiscommoninpatientsinnursinghomes,thoughislikelytobeunder-diagnosed(3).ADepartmentofHealthandChildrenreportstatedthat26%ofthesepeopleinresidentialcarewerereportedashavingdementia(63).Thisislikelytobeagrossunderestimation(3).IntheUSAandEurope,betweenone-halfandtwo-thirdsofnursinghomesresidentsaresaidtohavedementia(64).ArecentstudyintheDublinareatoassesscognitiveimpairmentfoundthat89%ofparticipantssurveyedwerecognitivelyimpaired,ofwhom42%wereseverelyand27%moderatelyimpaired.However,onlyonethirdoftheparticipantssurveyedhadarecordedclinicaldiagnosisofdementia(65).

Studieshavefoundthatoveraone-yearperiodhavingaco-residentcaregivermadeadmissiontoresidentialcaretwentytimeslesslikelyforapersonwithdementia,thusemphasisingthepivotalroleplayedbyfamilycaregivers(66).

Irishresearchhasshownthatthekeyfactorsinfluencingfamilycaregivers’decisiontomovetheirrelativeswithdementiaintoresidentialcarearecomplexandinterrelated(67).Professionalswerefoundtoplayakeyroleinpromptingthisdiscussionaboutplacementwithcarers.

Reasonsforchoosingplacementincluded:

• Theexcessivedemandsofcaring,especiallynight-timecaringandcontinenceissues

• Adeclineinphysicalandmentalhealthofboththecarerandthepersonwithdementia

• Lackofformalandinformalsupport• Conflictingrolesandresponsibilities,especiallyforadult

childrencarerswithconflictingdemands• Financialsacrificeandhardshipofcarers

ManyoftheNationalDementiaStrategiesinothercountries(NorthernIreland,England,France,ScotlandandAustralia)havetargetedtrainingforhealthserviceprofessionalsandhaverecognisedthatqualityofcareforpeoplewithdementiainresidentialcaresettingscanbeenhancedthroughtraining,knowledgeandcommitmentofstaff(3).

Suggestedstrategiestoimprovethequalityofcareinnursinghomesincludethefollowing(26):

• Identificationofaseniorstaffmemberwithinthecarehometotaketheleadforqualityimprovementinthecareofpersonswithdementiainthecarehome.

• Developmentofalocalstrategyforthemanagementandcareofpeoplewithdementiainthecarehome,ledbythatseniorstaffmember.

• Onlyappropriateuseofanti-psychoticmedicationforpeoplewithdementia.

• Thecommissioningofspecialistin-reachservicesfromolderpeople’scommunitymentalhealthteamstoworkincarehomes.

• Thespecificationandcommissioningofotherin-reachservicessuchasprimarycare,pharmacy,dentistry,etc.

Internationalconsensusondesignfeaturesthatunderpinbestpracticeindementiacareinclude(3):

• Smallscale• Familiar,domestic,homelyinstyle• Plentyofscopeforordinaryactivities(unitkitchens,

washinglines,gardensheds)• Unobtrusiveconcernforsafety• Differentroomsfordifferentfunctions• Age-appropriatefurnitureandfittings• Safeoutsidespace• Singleroomsbigenoughforlotsofpersonalbelongings• Goodsignageandmultiplecueswherepossible,e.g.sight,

smell,sound• Useofobjectsratherthancolourfororientation• Enhancedvisualaccess• Controlledstimuli,especiallynoise

HIQA(HealthInformationandQualityAgency)hasdevelopedspecificstandardsfortheoperationofnursinghomesandresidentialcentres(68).SomeoftheareasspecificallyrelatedtoGPcareinclude:

• Medicationmanagement• Medicationmonitoringandreview• Useofpsychotropicmedication• Endoflifecare

7.2 Palliative CareThemajorityofpeoplewithdementiadieinnursinghomes,onlyaround2%dieinahospice(20).Earlyrecognitionoftheadvancedstagesofdementiawithtimelyreferraltoacommunitypalliativecareteamanduseofendoflifecarepathways,mayimprovequalityofcare.TheneedtoaddressendoflifecareforpeoplewithdementiaandthelackofresourcesavailablehasbeenexploredinBuildingConsensusfortheFuture2012,producedbyTheIrishHospiceFoundationandTheAlzheimerSocietyofIreland(69).

Advancecareplanningandpalliativecareplansforpatientswithendstagedementiamayhelptoreduceinappropriateinterventions,suchasantibioticsforfever,artificialfeedingandcardiopulmonaryresuscitation(70).

Guidanceforthepalliativecaremanagementofpatientswithdementiaisgivenintable13.

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Table 13: Dementia Palliative Care (18)

• Dementiacareshouldincorporateapalliativecareapproachconsideringphysical,psychological,socialandspiritualneedsofthepatient.

• Advancecareplanningshouldbeutilizedbyhealthandsocialcareprofessionals

• Palliativecareservicesshouldbeavailabletopeoplewithdementiainthesamewaytheyareavailabletopeoplewhodonothavedementia.

• Peoplewithdementiashouldbeencouragedtoeatanddrink bymouthforaslongaspossible.Specialistassessmentandadviceconcerning swallowingandfeedingindementiashouldbeavailable.Nutritionalsupport,includingartificial(tube)feeding,shouldbeconsidered ifdysphagiaisthoughttobeatransientphenomenon,butartificialfeedingshouldnot generallybeusedinpeoplewithseveredementiaforwhomdysphagiaordisinclinationtoeatisamanifestationofdiseaseseverity.Ethical andlegal principlesshouldbeappliedwhenmakingdecisionsaboutwithholdingorwithdrawing nutritionalsupport.

• Policiesinhospitalsandlong-stayresidential,nursingorcontinuingcareunitsshouldreflectthefactthatcardiopulmonaryresuscitationisunlikelytosucceedincasesofcardiopulmonaryarrestinpeoplewithseveredementia.

• Ifpeoplewithdementiahaveunexplainedchangesinbehaviourtheyshouldbeassessedtoseewhethertheyareexperiencingpain,potentiallybytheuseofanobservationalpainassessmenttool.

Examplesofpainassessmenttoolsforpatientswithdementiainclude:

• TheAbbeyPainScale:http://www.bcf.nhs.uk/docs/19354_8582738196.pdf?_ts=1&_ts=1

• DOLOPLUS2Scale:http://prc.coh.org/PainNOA/Doloplus%202_Tool.pdf

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Appendix:

(1) Dementia Resources a. Information about Dementia

• The Alzheimer Society of Ireland• ContacttheAlzheimerNationalHelplineMondayto

Friday,10am-4pm.Freephone1800341341.Email:helpline@alzheimer.ieVisitwww.alzheimer.ie

• Alzheimer Society UKprovideanonlineforumforcarerscalledTalkingPointathttp://forum.alzheimers.org.uk

• The Scottish Dementia Working Groupisrunbypeoplewithdementiaandprovidesinformationforpeoplewithdementiaatwww.sdwg.org.uk

• The Dementia Advocacy & Support Network International (DASNI)providesanonlinesupportnetworkforpeoplewithdementiaatwww.dasninternational.org

Primarily For Healthcare Professionals• The Dementia Services Information and Development

Centre (DSIDC)@StJames’sHospital,isaNationalCentreforexcellenceindementia,offeringservicesin(1)EducationandTraining,(2)InformationandConsultancy,(3)Research.Phone:014162035,email:dsidc@stjames.ieorseewebsite:http://dementia.ie.

• Living with Dementia,TrinityCollegeDublin.HostedbyTheSchoolofSocialWorkandSocialPolicy,TCD,ithasresearch,educationandinformationdisseminationcomponents.Phone:018962914,visitwebsite:http://livingwithdementia.tcd.ie

• Bradford Dementia Group runsundergraduateandpostgraduatecoursesondementiaforhealthcareprofessionals:http://www.brad.ac.uk/health/career-areas/bradford-dementia-group/

• The Dementia Centre at Stirling UniversityDSDCisaninternationalcentreofknowledgeandexpertiseindementiacare:http://dementia.stir.ac.uk

b. Service Providers

• The Alzheimer Society of Ireland Fordementia-specificspecialistservicessuchasdaycare,homecare,socialclubs,familycarersupportgroupsandtrainingacrossIrelandcontact:AlzheimerNationalHelplineFreephone1800341341,Email:helpline@alzheimer.ieorvisitwww.alzheimer.ie - AlzheimerCafés:

TheAlzheimerCaféisasafeandrelaxedplacewherepeoplewithdementiaandtheirfamiliescanmeettoshareexperiencesandtalkaboutdementia.www.alzheimercafe.ieAlzheimerSocietySocialClubs:Drop-incentresforcarersandpeoplewithdementia.AlzheimerSocietyofIrelandHomeCareServiceSpecialisthomecare/homesupportservicethatusetraineddementiacareworkerstoprovidesupportandcareinapersonshomeforadesignatednumberofhoursperweek.

• Private Home Care Agencies Severalagenciesnowprovidehomecareservices.Listsofapproved,fullyinsured,agenciesareavailablefromLocalHealthCentre’sandSocialWorkTeams.Costsmayvary.

• The Carer’s Association• Forservicessuchashomerespite,carertrainingand

supportgroupsaroundIreland;Call1800240724/visitwww.carersireland.ie

• Caring for Carers Ireland Contact0656866515/www.caringforcarers.ie

• The Health Service Executive (HSE) TofindoutwhereyourlocalHSEHealthCentreisortoaskaboutservicesthatmaybeavailableinyourarea;Call1850241850,visitwww.hse.ie

c. Legal Services

• The Law Society of Ireland• ForalistofsolicitorsworkinginIreland,call016724800or

visithttp://www.lawsociety.ie TheLawSocietyistheeducational,representativeandregulatorybodyofthesolicitors’professioninIreland.

• The Legal Aid Board Theboardprovideslegalaidandadviceonmattersofcivillaw.Thereisameanstesttoaccessthisservice.Alistoflawcentresoperatingaroundthecountryisavailableat1890615200orwww.legalaidboard.ie

• FLAC – Free Legal Advice Centres Voluntaryorganisationwhichprovidesinformationandreferralonlegalissuesoverthephoneandatanumberofpart-timeclinics.Thereisnomeanstestfortheservicebuttheydonotprovidelegalrepresentationorundertakelegalwork.ContacttheInformationandReferralLineat1789035025orvisithttp://www.flac.ie

d. Information about Financial Grants and Entitlements

• The Citizen’s Information Service ThisisastatutorybodyandprovidesinformationaboutpublicservicesandtheentitlementsofthecitizensofIreland.Forinformationaboutgrantsandincomesupports,howtoapplyforthesesupportsortolocatethenearestofficetoyou;Phone:0761074000orLoCall:1890777121orVisit:www.citizensinformation.ie.

• The Department of Social Protection TheDepartmentchargedwiththedeliveryofincomesupportssuchastheCarer’sAllowance,tofindoutaboutthesesupportsandwhereyourlocalwelfareofficeisvisithttps://www.welfare.ie

(Much of the information in the appendix is adapted from leaflets from Dementia Services Information & Development Centre http://www.dementia.ie & The Alzheimer Society of Ireland www.alzheimer.ie)