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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:[email protected]
• 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:[email protected]: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:[email protected] - 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)