ArticlePDF AvailableLiterature Review

Keeping People with Dementia or Mild Cognitive Impairment in Employment: A Literature Review on Its Determinants

MDPI
International Journal of Environmental Research and Public Health (IJERPH)
Authors:

Abstract

Background: Approximately 10–20% of people with early onset dementias (EOD) or mild cognitive impairment (MCI) are aged under 65 and, due to extended working life and increasing prevalence of dementias, they more and more frequently will be present in the active workforce. This review aimed to synthesize the available information about the ability of people with EOD or MCI to retain their participation in the labor workforce. Methods: We searched SCOPUS and EMBASE for peer-reviewed papers that reported studies assessing work ability in employees with EOD or MCI that were published in the period of January 2010 to August 2019. Results: We selected four publications, in which 1012 participants with EOD or MCI were enrolled (41.2% males). Cognitive difficulties rather than motor dysfunction were found to reduce patients’ ability to work. Two main themes emerged: management of dementia in the workplace and the impact of symptoms on working status. Conclusions: EOD and MCI impact on workforce participation by determining problems in executive functions. Although this review was based on a small sample of studies, it can be shown that support in the workplace may act as a facilitator to enhance workforce participation, and occupational health professionals can help patients with EOD or MCI continue working as much as possible.

Int.J.Environ.Res.PublicHealth2020,17,842;doi:10.3390/ijerph17030842www.mdpi.com/journal/ijerph
Review
KeepingPeoplewithDementiaorMildCognitive
ImpairmentinEmployment:ALiteratureReviewon
ItsDeterminants
FabiolaSilvaggi1,*,MatildeLeonardi1,PietroTiraboschi2,CristinaMuscio2,ClaudiaToppo1
andAlbertoRaggi1
1UOCNeurologia,SalutePubblicaeDisabilità,FondazioneIrccsIstitutoNeurologicoCarloBesta,
20133Milan,Italy;matilde.leonardi@istitutobesta.it(M.L.);claudia.toppo@istitutobesta.it(C.T.);
alberto.raggi@istitutobesta.it(A.R.)
2UOCNeurologia5Neuropatologia,FondazioneIrccsIstitutoNeurologicoCarloBesta,
20133Milan,Italy;pietro.tiraboschi@istitutobesta.it(P.T.);cristina.muscio@istitutobesta.it(C.M.)
*Correspondence:fabiola.silvaggi@istitutobesta.it;Tel.:+390223943105
Received:5December2019;Accepted:27January2020;Published:29January2020
Abstract:Background:Approximately10–20%ofpeoplewithearlyonsetdementias(EOD)ormild
cognitiveimpairment(MCI)areagedunder65and,duetoextendedworkinglifeandincreasing
prevalenceofdementias,theymoreandmorefrequentlywillbepresentintheactiveworkforce.
ThisreviewaimedtosynthesizetheavailableinformationabouttheabilityofpeoplewithEODor
MCItoretaintheirparticipationinthelaborworkforce.Methods:WesearchedSCOPUSand
EMBASEforpeerreviewedpapersthatreportedstudiesassessingworkabilityinemployeeswith
EODorMCIthatwerepublishedintheperiodofJanuary2010toAugust2019.Results:Weselected
fourpublications,inwhich1012participantswithEODorMCIwereenrolled(41.2%males).
Cognitivedifficultiesratherthanmotordysfunctionwerefoundtoreducepatients’abilitytowork.
Twomainthemesemerged:managementofdementiaintheworkplaceandtheimpactofsymptoms
onworkingstatus.Conclusions:EODandMCIimpactonworkforceparticipationbydetermining
problemsinexecutivefunctions.Althoughthisreviewwasbasedonasmallsampleofstudies,it
canbeshownthatsupportintheworkplacemayactasafacilitatortoenhanceworkforce
participation,andoccupationalhealthprofessionalscanhelppatientswithEODorMCIcontinue
workingasmuchaspossible.
Keywords:employment;dementia;workperformance;workengagement;publichealth
1.Introduction
Dementiaisabroadtermreferringtoanumberofneurologicaldisordersthatcausea
progressivedeclineincognitivefunctioning[1]andcanbeassociatedwithseveralneurological
conditions,suchasParkinson’sdisease(PD),Huntington’sdisease(HD),Alzheimer’sdisease(AD)
andADrelateddisorder(ADRD),Lewybodiesdementia(LBD),frontotemporaldementia(FTD),or
vascularconditions[2].
Thevastmajorityofdementiacasesarediagnosedamongpeopleaged70orolder,andfeware
diagnosedinadulthood,thatis,beforetheageof65—theseconditionsarereferredtoasearlyonset
dementia(EOD).EODincidencehasbeenestimatedat13.4/100,000personsperyearinthe30–64year
oldagegroup[3],whileitsprevalenceinthelast15yearswasreportedbetween42.3and81.0per
100,000cases[4–6].
Inadditiontothis,dementiacanbeprecededbymildcognitiveimpairment(MCI),whose
prevalenceis3–22%inpeopleaged65orolderandcanalsobediagnosedbeforeaged65inaportion
ofthepopulationwhereinitprogressesintodementiain5–10%ofcasesperyear[7].
Int.J.Environ.Res.PublicHealth2020,17,8422of11
Thus,thereisaportionofworkingpeoplethatmayexperiencedifficultieswithworkrelated
activities,orhaveareducedworkability,duetoEODorMCI;worldwide,itisinfactestimatedthat
10%ofthe35.6millionpeoplelivingwithdementiaareagedunder65[8].
SomeworkerswithEODorMCIcontinuetowork,thankstotheadjustmentstotheiractivities
madebycompanies,whereasothershavetoquitbecauseofimpairedperformance[9,10].
Symptomsofcognitivedeclineareinfactfrequentlyfirstnoticedbycaregiversorrelevant
others—employedpeople,coworkers,clients,andemployersmaynoticethepresenceofcognitive
difficultiesbecausetheyinterferewithanindividual’sabilitytowork,expressedasbeingeasily
distractedbybackgroundnoise,poormemory,andinabilitytoperformmultitaskingactivities[11].
Ithastobenotedthatthesesymptomsalsoaffectolderadultswithoutdementiaandmaycause
areductionintheirworkperformance.Olderworkersareoftenconsideredlessflexible,withalower
abilitytolearnandwithmoredifficultytotrain,duetoanormaldeclineofcognitiveabilityand
motorfunctioning[12,13].Organizationalpracticesoftendissuadeolderemployeesfrom
participatingintraining[14,15],withimplicationsbeingontheassignmentofjobtasks.Older
workersarenotalwaysdeemedsuitablefortasksthatarecommonlyassociatedwithyounger
workers,andmaycauseareductionofselfesteemandmotivation,aswellasdifficultyinremaining
inthelabormarket[16].
DementiasandMCIareexpectedtoincreaseinprevalenceduetopopulationageing[17],early
diagnosisduetotheincreasinguseofbiomarkers[18,19],aswellasduetoincreasedriskofhigher
prevalenceofconditionsthatincreasetheriskofdementiasuchastype2diabetesmellitus[20,21].
Paralleltothis,workinglifewillbeextendedinthenearfutureduetheageingpopulation,less
replacementfromyoungerworkers,andnationalwelfarepoliciesencouragingolderworkersto
remaininthelaborworkforce,delayingretirement[10,22].Thejointeffectofthesethreephenomena
willlikelydetermineahigherpresenceintheworkplaceofpeoplewithcognitiveimpairments,MCI,
orEOD.
Itisimportantinanyworkplacetoconsideranddecidewhatkindofinterventionscouldlead
tobetterworkperformanceforpeoplewithbraindisordersassociatedwithcognitivedeterioration
[23].Worksiteinterventionsarefeasibleiftheytakeintoaccountthebalancebetweenthejob
demandsononesideand,ontheotherside,thementalandphysicalresourcesofworkersthat,in
thiscase,areimpairedasaconsequenceofcognitivedifficulties[24].
Therelationshipbetweenjobdemandsandworkers’resourcesisknownas“workability”[22],
andisdeterminedbyprofessionalknowledgeandskills,values,attitudes,motivation,andfeatures
ofworkitself[23].Helpingworkerstomaintaintheirworkabilityisbeneficialtocompanies,asithas
thepotentialtoenhanceworkers’productivityandstrengthentheirmentalandphysicalresources
[25,26].
Tokeeponworkinghasseveraladvantagesforpeoplewithcognitiveimpairments,MCI,or
EOD.Beyondeconomicbenefits,socialandpsychologicalbenefits,includingselfesteem,personal
identity,qualityoflife,andfullparticipationinsocietyareofimportance[27].
Manystudies,whichhavefocusedontheproblemsassociatedwithanunplannedearlylabor
marketexit,haveevidencedseveralnegativeconsequences,includingincreasedincidenceof
depression[28],lossofpersonalidentity[29],andlossofsocialnetworks[30].
Forthisreason,itisimportantthattheworkerscollaboratewithHumanResourcesstaffin
planninginterventionsaimedatfosteringtheirworkability[31].Inplanningworkplacesupport
activities,theyshouldconsidertheseverityofworkers’cognitiveimpairmentandmanageitsrelated
stigmathroughclearandinclusivepraxesinwhichcolleaguesareinformedonthepotentialbenefits
ofsupportingpeoplewhodevelopcognitiveimpairment[32].
Insum,EODandMCIareconditionswhosetypicalageofonsetisaroundtheperiodof
retirement,andlittleresearchhasaddressedtheworkrelatedexperienceofpeoplewiththis
symptomatology[21,33],aswellasthesocialandeconomicconsequencesoftheirexitfromthelabor
force[34–36].
Int.J.Environ.Res.PublicHealth2020,17,8423of11
Forthisreason,understandingthecapacityofpeoplewithEODandMCItokeeponworking,
thatis,understandingtheirworkability,aswellasunderstandingwhatcanbedoneintheworkplace
andhowtodealwithfactorsassociatedwithjobloss,willbeofimportanceforpublichealthpolicies.
Assuchapieceofinformationhasnotyetbeensynthesizedinaliteraturereview,theaimofthe
presentstudywastoprovideupdatedinformationabouttheabilityofpeoplewithEODandMCIto
keeponparticipatinginthelaborworkforce.
2.MaterialsandMethods
2.1.SearchStrategy
WeperformedacomprehensivesearchonSCOPUSandEMBASE,coveringtheperiodof
January2010toAugust2019toidentifyprimaryresearchpapersreportingeitherrandomizedclinical
trials(RCTs)orobservationalstudiesthatassessedworkabilityinworkerswithEODorMCI,orthe
factorsassociatedwithjobloss.
Thefollowingcombinationsofkeywordsweresearchedwithinthetitles,abstracts,orkeywords:
(dementiaOR“mildcognitiveimpairment”ORMCI)AND(“workperformance”OR“workability”
OR“performanceappraisal”ORemployment).
Oursearchwaslimitedtooriginalstudies,publishedinEnglishandwithanabstract,whichhad
tobeindexedbySCOPUSorEMBASE.PleaseseetheSupplementaryMaterialsforthedetailedsearch
strategy.
2.2.Articles’InclusionandExclusionCriteria
Wespecificallysearchedforclinicaltrialsandobservationalstudies,eithercrosssectionalor
longitudinal,andexcludedreviews,commentaries,letterstotheeditors,editorials,qualitative
studies,andcasereports.
Thecontentofpapershadtoenabletheextractionofinformationonworkability,definedas
workperformanceorperformanceappraisal,inworkerswithEODassociatedwithdifferent
neurologicalconditions(i.e.,PD,HD,AD,ADRD,LBD,FTD,orvascularconditions)orMCI.
StudiesdrawingfrompopulationswhereinthepresenceofEODorcognitivedifficultieswas
chieflyaddressedasasymptominthecontextofothergeneralmedicalconditionswereexcluded.
Finally,studiesthatwerebaseduponcaregivers’reportsonlywereexcludedaswell.
2.3.PaperSelectionandDataExtraction
Abstractsofpaperswerescreenedbyajuniorresearcher(F.S.).Toensurequalityand
consistencyofdataextraction,20%oftheabstractsandoffulltextswererandomlyselectedfora
secondcheckbyaseniorresearcher(A.R.)whowasblindtothedecisionofthefirstcheck.We
determinedtheoverallagreementratebetweenresearchers—ifitwasbelow70%,eachofthedouble
checkedabstractormanuscriptwasrereviewedagainbythetworesearcherstogettoafinaldecision
byconsensus,andanadditional20%setofabstractsandfulltextswasdoublecheckedagain.
Extractedinformationincludedhealthconditions—broadlydefinedasunspecifiedEOD;EOD
duetoaspecificunderlyingcondition,i.e.,PD,HD,AD,ADRD,LBD,FTD,vascularconditions;
MCI—andthemaincharacteristicsofpatients,whichincludedsamplesize,genderdistribution,age,
andpercentageofemployedsubjectsforeachstudy.
Aswehadforeseenthatlittleliteraturewasavailableonthistopic,wedidnotorganizethemain
contentsonworkabilityintooverarchingcategories.Rather,availableinformationonworkability
wasdescriptivelyreportedandwereliedonabottomupapproachfortheorganizationofreview’s
results,thatis,wedescribedliteraturefindingsconsistentlywiththewayinwhichresultswere
reportedineachpaper.
Whetheranyissueassociatedwithordeterminantofworkabilitywasfound,thecontentofthe
manuscriptwasincludedunderatopic,andthesameprocedurewasfollowedincasethesametopic
wasaddressedinotherstudies.
Int.J.Environ.Res.PublicHealth2020,17,8424of11
3.Results
Theinitialsearchreturned1675records.Followingabstractscreeningandfulltextassessment,
fourpublicationswereselectedforinclusioninthisreview[37–40].Therateofagreementbetween
reviewerswas99.8%attheabstractcheckand100%atfulltextevaluation.
Figure1showstheflowdiagramofoursearchprocessandTable1presentssummaryfindings
ofthepublicationsincludedinthisreview.
Recordsretrievedin
SCOPUS
Recordsexcludedatabstract
check(n=1655):
Noabstract(n=0);
Notdealingwiththetopic(n
=1130);
Casestudies(n=6);
Editorial/letter(n=0);
Primarydata(n=308);
Psychometricdata(n=211)
RecordsretrievedinEMBASE
withoutMedline
(
n=125
)
Selectedforfulltextanalysis
(n=20)
Totalresearchresult
(n=1680)
Duplicates
(n=5)
Recordsscreenedafter
duplicatesremove
(n=1675)
Fulltextnonfound(n=0)
Fulltextanalyzed
(
n=20
)
Fulltextsexcluded(n=16):
Datanotadequateforextraction
(n=16).
Fulltextsincludedinthe
qualitativeandquantitative
synthesis
(
n=4
)
Int.J.Environ.Res.PublicHealth2020,17,8425of11
Figure1.Flowchartofpapers’selection.
Table1.Maincharacteristicsandmainoutcomesoftheincludedstudies.
IDDementia
Type
Sample
SizeAge
Male
Gender
(%)
Employed
(%)MainResults
Robertsonetal.,
2013[37]EOD757.5
(50–65)b
4
(57.1%)
7
(100%)
Appropriatesupportprovidedinthe
workplaceisassociatedwithimprovement
oftheworkabilityinpatientswithEOD.
Jacobsetal.,
2018[38]HD22046.6
(19–75)b
96
(43.6%)
114
(52%)
Apathyandcognitiveimpairments
(informationprocessingspeedand
cognitiveflexibility)aredeterminants
ofunemploymentinpatientswithHD.
Sakataetal.,
2017[39]EOD14353
(48–57)a
19
(13%)
143
(100%)
Atotalof14%ofpatientswithEODlefttheirjobs
withinoneyearaftertheirdiagnosis
(7.3%amongthosewithoutEOD).
Watkinsetal.,
2018[40]HD64218–65298
(46%)
305
(44%)
Cognitivesymptomsandmotorsymptoms
haveasignificantinfluenceondeclineof
workabilityandonthedecisiontoleave
workinpatientswithHD
Notes:amedianandinterquartilerange;bagerange.EOD:earlyonsetdementia,HD:Huntington’sdisease.
Acrossthestudies,1012participantswithadiagnosisofneurologicalconditionsassociatedwith
dementiawereenrolled,withmenbeingaminorpart(41.2%oftheentiregroup)—twostudies
involvedsamplesofpatientswithunspecifiedEOD,andtwowithEODduetoHD.
Onestudyaddressedthemanagementofpatientsintheworkplace[37],andthreeprospectively
addressedworkingstatuschange—oneaddressedjoblossafterunspecifiedEODdiagnosis[38],and
thesecondandthirdevaluatedthenegativeimpactofneuropsychiatricsymptomsinpatientswith
EODduetoHD[39,40].
3.1.ManagementofDementiaintheWorkplace
OnestudyaddressedthemanagementofpatientswithunspecifiedEODintheworkplace[37].
ThepaperdescribedademonstrationprogramcalledSidebySidetoevaluatethepossibilityof
engagingpatientswithEODthroughworksiteinterventions.TheprogramstartedinAugust2011
andwasstillongoingwhenthepaperwaspublished.
TheprograminvolvedsevenpeoplewithmildEODagedbetween50and65years.Theyworked
onedayperweekinahardwarestorewiththesupportprovidedbyworkbuddiesandprogramstaff.
Theparticipantsthemselveschosetheareaofthestorewheretheywishedtoworkandundertook
theworkdutiesrelatedtothatspecificarea.
TheworkdaystartedwithanappointmentinacottageofLifeCare’scommunity,whereall
participantsweresubjectedtosafetychecksandbriefingandthentravelledtotheirworkplaceina
minibus.
Inahardwarestore,theparticipantsworkedfora4hourshiftwithamidshiftmealbreak.
Endofdayactivitiesincludeddebriefingtoidentifyanddiscussanydifficultiesencountered
duringtheworkshift,journalingtoprovideamonitoringoftheworkexperienceforeachparticipant,
andsocializationwiththegroup.
Allparticipantswereabletoworkandenjoyedtheirworkplaceexperience,showinginterest
andanimprovementofselfesteem,asreportedbyfamilycarers.
3.2.TheimpactofSymptomsonWorkingStatus
Threestudiesaddressedworkingstatuschange.SakataandOkumuraconductedamatched
cohortstudytoshowtheincidenceofjoblossamongpatientswithunspecifiedEOD[38].
Thestudyinvolved220participantswithEODaged40–59,and1100ageandgendermatched
controlswithoutEOD.Thedatashowedthatby2andahalfmonthsafterEODdiagnosis,therewas
anincreasedlikelihoodinleavingone’sjob.After6months,9.1%ofparticipantswithEODand3%
ofnonEODcontrolslefttheirjob.After1year,thesamefigureswere14%and7.3%,respectively.
Int.J.Environ.Res.PublicHealth2020,17,8426of11
ThesecondstudyevaluatedwhichHDrelatedsignsareassociatedwithunemployment[39]in
patientswithEODduetoHD.Thestudyinvolved220HDmutationcarriersthatwerecategorized
asemployed(n=114)andunemployed(n=106).Inthemultivariateanalysis,thesignsthatwere
significantlyrelatedtounemploymentstatewereapathy,cognitiveflexibility,andexecutive
functioningdomains,withapathybeingthestrongestsignrelatedtounemployment.
Thethirdstudyevaluatedtheassociationofcognitivedecline,comparedwithmotordecline,
withthedecisiontoleavework[40]inpatientswithEODduetoHD.Thestudyinvolved642patients
withHDaged18–64,recruitedfromtheEnrollHDobservationalstudyof2015.Resultsshowedthat
everyyearofdelayincognitivesymptomonsetcorrespondedtoapproximately0.8yearsofdelayin
retirementage(approximately0.5aftercorrectingforconfounders).
Paralleltothis,everyyearofdelayinmotorsymptomonsetcorrespondedtoapproximately0.8
yearsofdelayinretirementage(approximately0.4aftercorrectingforconfounders).
Moreover,posthocanalysisrevealedthatpresenceofbothmotorandcognitivesymptomswas
associatedtoahigherlikelihoodofquittingwork.
4.Discussion
Withthisreview,weaimedtoidentifyandsynthesizetheavailableknowledgeregardingthe
abilityofpeoplewithEODandMCItoremaininthelaborworkforce,aswellasthefactorsassociated
withjobloss.TheresultsstrengthentheideathatpatientswithEODhaveanincreasedlikelihoodto
leavetheirjobduetotheimpactofsymptomsontheabilitytowork,aswellasduetotheworkplace’s
inabilitytoadapttotheperson’sneeds.Thesymptomsthathavebeenreportedasreducingpatients’
abilitytoworkaremostlyrelatedtocognitiveandbehavioraldeficits,suchasapathyandcognitive
impairment,ratherthantomotordysfunction.Onestudyreportedtheresultsofaworkparticipation
programdedicatedtopatientswithEODthat,althoughbasedonaverylimitednumberof
participants,showedsomepositiveresults.Finally,ourstudypointsoutthelimitedattentionthatis
giventosuchatopicsofar;infact,ourresultsarebasedonaverysmallamountofmanuscripts,
whichrepresentapproximately0.2%ofalltheretrievedrecords.
Ithastobenotedthattheparticipantsofthestudieshereinincludedweremostlywomenofan
olderage,whichbasicallycorrespondstothetypicalpresentationofdementia.Apreviousreporthas
moreovershownthatwomenwithdementiahaveamorerapiddeclinecognitivecomparedtomen
[41].Thissituationimpactstheirparticipationintheworkforce.Ourreviewhighlightsthefactthat
womenweremorelikelythanmentoleavetheirjobwithin1yearaftertheirdiagnosis.Thisevidence
issimilartotheresultsofpriorstudiesexaminingtheincreasedriskofjoblossassociatedwithhealth
problems[42].
ApathyisacommonlyreportedsymptominpatientswithdementiasandMCI[39],anditcan
haveamajorimpactonhealthrelatedqualityoflife[41].Itisconnectedtoadeclineingeneral
functioningdefinedaslossofautonomyinperformingactivitiesofdailylivingandexecutive
dysfunction[43],andithasbeenfoundtoberelatedtounemploymentinpeoplewithEODdueto
HD[37].However,apathycanbedifficulttomeasureasaconsequenceoftheabsenceofaclear
definition—wheredifferentconceptssuchaslackofinterest,abulia,affectiveflattening,social
withdrawal,andindifferencecoexist[44]—andthuscanbemisinterpretedinworkplacecontextsand
takenaslaziness.
Conversely,depressionwasnotassociatedtounemploymentstatus[38].Sucharesultsisatleast
unexpectedbecausedifferentstudies,includingclinicalstudiesandpopulationsurveys[45,46]found
theoppositeassociation.ItshouldmoreovertobenotedthatinthesampleofthestudybyRobertson
[37],theoveralllevelofdepressionwasmoderatetosevere,withhalfoftheparticipantsreferring
depressivesymptoms.Cognitivedifficulties,suchasvisualattention,processingspeed,and
cognitiveflexibility,i.e.,executivefunctions,havebeenfoundtobeassociatedwithunemployment
[38].
Executivefunctionsincludeplanning,organization,cognitiveflexibility,andbehavior
regulation.Thus,patientswithexecutivefunctiondeficitsmayfailinunderstandingwhatisneeded
tocompleteataskandmaybeunabletofocustheirattentiononmorethanonethingatatime.
Int.J.Environ.Res.PublicHealth2020,17,8427of11
Theassociationbetweendeficitsinexecutivefunctionsandunemploymentistherefore
expectable,asthesefunctionsconstitutethesoftskills,thatis,theclusterofpersonalitytraitsand
personalhabits,includingworkethic,courtesy,teamwork,selfdiscipline,selfconfidence,
conformitytoprevailingnorms,andlanguageproficiency[47],thatareneededtocomplywiththe
vastmajorityofjobtasks.Previousresearcheshavehighlightedtheimportanceofsoftskillsin
workplacecontexts;infact,ithasbeendemonstratedthat75%–85%oflongtermjobsuccessdepends
onpeople’sabilitytoutilizesoftskills,andonly15%–25%isdeterminedontechnicalknowledge
[48,49].
Softskillsareconsideredextremelyimportantinmanyoccupationsandindustries[50,51],and
impairmentoftheseskillsduetoemergingcognitivedifficultiesmakesitdifficultfordementia
workerstocontinuetowork.ThisisconfirmedbyWorachKardasandKostrzewski,whofoundthat
anyimpairmentinmentalhealthcanresultinunemployment[52].
Thedecisionorneedtoleaveworkisinfluencedbytheonsetandpresenceofbothcognitiveor
motorsymptoms,andsuchaconceptwasaddressedinonestudyinwhichpatientswithEODdue
toHDwereenrolled[39].
Apreviousstudyhasrevealedthattheparticipantswithhigherbaselinecognitivescoreshad
slowerdeclineinfunctionalcapacity,demonstratingamarkeddeclineofbothcognitivesymptoms
andmotorsymptoms[53].Itis,however,difficulttodistinguishtheimpactofmotorvs.cognitive
symptomsinpatientswithHD,astheyarecloselyinterlinked—thisisconsistentwiththeideaof
corticalloopssubservingthecoordinationofmotor,cognitive,andemotionalfunction,integratedin
thebasalganglia[54].
Ontheotherhand,somepatients,inthemildstageofdementia,retaintheabilitytowork,
providedtheadjustmentstotheiractivitiesmadebyemployers,asshowninarecentqualitative
report[55].Thisisconsistentwithworksiteinterventionsthatprovideanopportunityforpeople
withEODtoundertaketailoredactivities,withtheconstantpresenceofstaffsupervisors[37,56–60].
Takingintoconsiderationthetrendstowardsincreasingworkingage[19,20]coupledwith
increaseintheprevalenceofneurologicalconditionsassociatedwithdementiaandcognitivedecline,
alsoduetoearlydiagnosticability[12–16],itisreasonabletoexpectariseinthepresenceofpeople
withEODorMCIinthelaborforce.Suchaphenomenonhasimplicationsbothforemployeesand
employers,aswellasforthoseworkingindependently.
Bykeepingonworking,peoplemaygaininoverallfunctioningandqualityoflifeandpreserve
positivehealthoutcomesandwellbeing,whereasthelattermaybenefitfromavoidingimmediate
lossofskilledpersonnelandmayenhancethegeneralworkplaceenvironmentandthecompanies’
socialresponsibility,forexample,inhelpingtoreducingstigmaandpromotingsocialinclusion[62].
However,thereareintrinsicdifficultiesthatdealwiththeimpairmentsinbothtechnicalandsoft
skillsduetodementiasorMCI,whichcallforcounsellingandprofessionalsupportintheworkplace
forworkersandformanagers.
ItisouropinionthatsuchservicesshouldberoutinelyprovidedtoworkerswithEODandMCI
toextendtheirprofessionallivesasmuchaspossible.
Occupationalhealthprofessionalscanhelppatientscontinueworking[59].This,besidesthe
aforementionedpositiveeffectsforworkersandemployers,mayinturnimpactontheindirectcosts
ofdementias,thatis,thoseconnectedtoprematureretirement,whichaccountforapproximately36%
to60%oftotaldementiacost[61].
Tomaximizetheoutcomeintermsofpreservedworkability,itisouropinionthatsupport
servicesforemploymentshouldbeintegratedwithinthecarepathway,andthatlegaldisposition
encourageolderworkerstoremaininthelaborworkforcetothemostprolongedperiodpossible.
Onelimitationofthisreviewneedsbeacknowledged.Eventhoughoursearchwasquite
extensive,wecannotbesurethatallrelevantarticleswerefound.Inadditiontothis—althoughthis
isnotaproperlimitation—anoverallcautionisneededwiththeinterpretationofourresultsin
considerationofthefactthatonly0.2%ofretrievedrecordswerefinallyincludedinourreview.
Int.J.Environ.Res.PublicHealth2020,17,8428of11
5.Conclusions
Thisreviewpointsout,asafirstresult,thepaucityofliteratureaddressingtheworkabilityand
factorsassociatedwithjoblossinpeoplewithEOD,alongwiththeabsenceofstudiesaddressingthe
sameissuesinpeoplewithMCI.
Suchafactcallsforaction,asitislikelythatincomingyearsmoreandmorepeoplewithsuch
conditionswillneedinformationonhowthesesymptomsshouldbehandledintheworkplace,as
wellaspatients’associationsneedingevidencetodeveloprecommendationsfortheworkingsector
soastoavoidprematureleavingofjobsofpatientswithmildsymptomsofdementia.
Keepinginmindthesmallamountofstudies,wecancautiouslyconcludethatEOD,associated
withHDorofanunspecifiedorigin,impactsuponworkforceparticipation,mostlydueto
neuropsychiatricsymptomsthatmaydetermineproblemswiththesocalled“softskills”.
However,oneexperiencethatwasfoundwasthatsupportintheworkplacemayactasa
facilitatorinenablingpatients’abilitytocarryoutdailyworktasks.
Suchworksiteinterventionsmaycontributetopreservepatients’overallhealthoutcomesand
wellbeing,reducestigma,promoteparticipationandsocialinclusion,and,inturn,mightimpacton
societalcostsofdementiasthroughacontainmentofindirectcosts.
Futurestudiesshouldtaketheseaspectsintoaccountandinvestigatewhichsignsandsymptoms
aremostlyconnectedtojoblossacrossdifferentkindofEODandMCI,sothatstrategiesaimedat
enhancingworkretentioninthesepatientscanbeplanned.
SupplementaryMaterials:Thefollowingareavailableonlineatwww.mdpi.com/xxx/s1.
AuthorContributions:Conceptionanddesign:F.S.andA.R.;dataacquisition:F.S.;dataanalysis:F.S.;
interpretationofresults:F.S.andA.R.;manuscriptdrafting:F.S.andA.R.;criticalrevisionofthemanuscript:
M.L.,P.T.,C.M.,andC.T.;approvalofthefinalversion:alloftheauthorsrevisedandapprovedthefinalversion
ofthemanuscript.Allauthorshavereadandagreedtothepublishedversionofthemanuscript.
Funding:Thisresearchreceivednoexternalfunding.
ConflictsofInterest:Theauthorsdeclarenoconflictofinterest.
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... Limited research exists on Cog-Dys developed at young ages (as would be the case for TC survivors) and relationships with employment (75). A review of 26 studies, including older cancer survivors, evaluated these associations, with the majority finding that Cog-Dys persisted long after cancer treatment, with deleterious effects on work performance and return to work (76). ...
... Here, TC survivors on disability had significantly higher odds of Cog-Dys than employed survivors in age-adjusted multivariable analyses. Cog-Dys can affect employment by affecting executive function (75), which includes planning, organization, cognitive flexibility, and behavioral regulation (75). ...
... Here, TC survivors on disability had significantly higher odds of Cog-Dys than employed survivors in age-adjusted multivariable analyses. Cog-Dys can affect employment by affecting executive function (75), which includes planning, organization, cognitive flexibility, and behavioral regulation (75). ...
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Background: There is limited information focussing on the perspectives of persons with younger onset dementia (YOD) in employment. This poses challenges for supporting this demographic within the workplace and during their transition to retirement. Objective: The aim of this scoping review is to address the identified need to ascertain what is known about the perspectives of employees with YOD. Methods: Records were included if they: considered working-aged persons who received a diagnosis of YOD whilst employed or soon after ceasing employment; considered the perspective of the person with YOD; and were published in English. Four databases (CINAHL, PubMed, Embase, Cochrane Library) were systematically searched, and grey literature was sought using the Google Scholar search engine. Using PRISMA-ScR guidelines, two reviewers screened the title/abstract then full text of identified documents. Disagreements were resolved with a third reviewer. Research papers were narratively synthesised, thematically analysed, and critically appraised. Results: Fourteen peer-reviewed research papers, and nineteen grey literature items were included in the review, with research papers found to be of reasonably high methodological quality. Five themes were identified, describing the experiences of employees with YOD: (1) Trying to manage difficulties prior to diagnosis; (2) Disclosure at the point of diagnosis; (3) Reasonable adjustments; (4) Employment cessation; and (5) Regaining meaningful roles following retirement. Conclusion: Findings revealed evidence for an emerging understanding of the lived experience of developing YOD within the workplace; however, further research is needed regarding the capabilities and support needs for persons with YOD to influence workplace policies and practices.
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Hope is an important but overlooked phenomenon in dementia studies. Few studies have examined how people with dementia experience or perceive hope, possibly because it is seen as a diagnosis without hope. In this article, we report on a doctoral study, the aim of which was to examine the phenomenon of hope from the perspective of younger people with dementia to generate new understanding and enable community-based healthcare professionals to support well-being. The study was conducted in the Midlands, England, and used a modified diary-interview method. Six participants were given a camera and asked to take pictures of whatever made them feel hopeful. During a post-diary semi-structured interview, a conversation about hope took place. Interviews were transcribed and interpreted using the ‘Voice-Centred Relational Method’. Findings show that hope is important to younger people with dementia. Sources of hope were the surrounding environment, keeping connected, taking action, and drawing on internal resources. An over-arching theme was ‘defying dementia’ and participants demonstrated resistance to negative stereotypes. Living with dementia did not curtail hope, although it could be weakened when participants felt ‘cast adrift’ by services. The In vivo codes generated were fear of dementia, threats to identity, disconnection from others, and frustrations and restrictions. It is concluded that hope should be a more central part of practice-based conversations with people with dementia.
Article
Objectives: Young-onset dementia (YOD) symptoms often first present in the workplace, resulting in work performance challenges and eventually loss of employment. This study aims to investigate the experiences, work values, and support needs of employees with YOD and their relatives. Method: Semi-structured interviews were conducted to explore the experiences, work values, and support needs of (former) employees with YOD and their relatives. Subsequently, separate focus group discussions were conducted for employees and relatives to review and prioritize interview findings. Inductive thematic analysis was applied to both datasets. Results: A total of 15 interviews (six employees; nine relatives) and four focus group discussions (ten employees; six relatives) were conducted. Six themes emerged, with five revolving around the central theme: desire to work. The other themes represent essential contributing factors, including importance of receiving a YOD diagnosis; knowledge, awareness, and understanding regarding YOD; open communication, joint decision making, and collaboration; work adjustments, involvement, and support; phasing out work and future perspectives. Conclusion: The findings highlight a strong desire to work post-YOD diagnosis, serving as a foundation for developing workplace support tools and guidance. This has the potential to help individuals with YOD preserve their self-confidence and identity while working within their capabilities.
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Background: Huntington's disease (HD) presents with motor, cognitive, and behavioral symptoms that impair functional capacity and the ability to maintain employment. The relative contribution of cognitive decline to work disability remains controversial. Objective: To evaluate the association of cognitive decline, compared with motor decline, with the decision to leave work. Methods: Data from the Enroll-HD observational study were analyzed. The correlation of age of cognitive symptom onset and age of motor symptom onset with age at leaving work was assessed. The association of the Stroop Color Naming Test (SCNT) cognitive assessment and the Total Motor Score (TMS) assessment (reverse scored) with the Total Functional Capacity (TFC) assessment was also assessed. Results: For every year delay in cognitive symptom onset, there was a 0.806 year increase in age at leaving work (SE = 0.030, p < 0.001, adj-R2 = 0.628). For every year delay of motor symptom onset, there was a 0.814 year increase in age at leaving work (SE = 0.031, p < 0.001, adj-R2 = 0.603). For every additional correct SCNT response given and for every unit increase in TMS, there was a 0.105 unit increase (SE = 0.006, p < 0.001, adj-R2 = 0.315) and a 0.104 unit decrease in TFC (SE = 0.003, p < 0.001, adj-R2 = 0.640), respectively. Conclusions: Cognitive symptoms have a significant association, comparable to that of motor symptoms, with occupational functioning and the decision to leave work, suggesting that development of therapies for both cognitive and motor decline would be important for allowing people with HD to remain in the workforce longer.
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Objective: The objective of this study was to develop and validate a practical computerized prognostic model that uses baseline psychometric and imaging data, including results of PET imaging of amyloid deposition, to predict the progression to dementia in patients at risk for Alzheimer's disease (AD). Patients and methods: Data from patients in a phase II trial of [F]flutemetamol for PET imaging of brain amyloid and from the Alzheimer's Disease Neuroimaging Initiative were used to train the prognostic model to yield a disease state index (DSI), a measure of the similarity of an individual patient's data to data from patients in specific diagnostic groups. Inputs to the model included amyloid PET results, MRI measurements of hippocampal volume, and the results of psychometric tests. The model was subsequently validated by using data from a prospective study of an independent cohort of patients with mild cognitive impairment. Results: In total, data from 223 patients of the 233 enroled were suitable for analysis. The DSI predicted by the model and the risk of progression to AD dementia within 3 years were higher for patients with amyloid deposition and neurodegeneration than for patients with amyloid deposition without neurodegeneration. Rates of non-AD dementia among patients with neurodegeneration at baseline were consistent with the results of other studies. The results were consistent with the Jack model of AD progression. Conclusion: The DSI from the model that included psychometric, MRI, and PET amyloid data provides useful prognostic information in cases of mild cognitive impairment.
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Early-onset dementia (EOD) affects the employment of patients and family members. To demonstrate how likely employees are to leave their jobs after an EOD diagnosis for themselves or a family member, we conducted a matched cohort study of 143 employees and 77 family members diagnosed with EOD using a claims database. We matched these participants to 5 controls each, and followed them for approximately 600 days. In the employee cohort, patients with EOD were more likely to leave their jobs than were controls (hazard ratio: 2.26). This suggests that healthcare providers should offer employment support to patients just after diagnosis.
Article
The purpose of this article is to analyse the available literature describing the economic burden of dementia and to compare costs between studies examining cost drivers. To shed light on this field, a systematic review is performed using PubMed, the Cochrane Library and Web of Science. An eight-year retrospective horizon was considered until 25 May 2018. Several papers were obtained from the database search (n = 23), being others (n = 3) identified through other sources (hand-searching) because we did not detect it through the three databases. The cost estimates were compared between three perspectives: state/publicly funded health services, third-party/private sector/not-for-profit organisations and patient and family and/or societal. The estimated total annual cost per person with dementia in Europe is on average €32,506.73 (n = 10), whereas for the United States, it gets €42,898.65 (n = 2). Furthermore, differences are appreciated by type of costs. Besides, differences by severity groups are also considered. Overall, the higher the severity the higher the associated costs. Dementia imposes a huge economic burden. The figures here presented provide a good framework to quantify these costs for both, economic experts and researchers, and policy decision makers.
Article
Importance Retinal structures may serve as a biomarker for dementia, but longitudinal studies examining this link are lacking. Objective To investigate the association of inner retinal layer thickness with prevalent and incident dementia in a general population of Dutch adults. Design, Setting, and Participants From September 2007 to June 2012, participants from the prospective population-based Rotterdam Study who were 45 years and older and had gradable retinal optical coherence tomography images and at baseline were free from stroke, Parkinson disease, multiple sclerosis, glaucoma, macular degeneration, retinopathy, myopia, hyperopia, and optic disc pathology were included. They were followed up until January 1, 2015, for the onset of dementia. Exposures Inner retinal layer thicknesses (ie, retinal nerve fiber layer [RNFL]) and ganglion cell–inner plexiform layer (GC-IPL) thicknesses measured on optical coherence tomography images. Main Outcomes and Measures Odds ratios and hazard ratios for incident dementia per SD decrease in retinal layer thickness adjusted for age, sex, education, and cardiovascular risk factors. Results Of 5065 individuals eligible for optical coherence tomography scanning, 3289 (64.9%) (mean [SD] age 68.9 [9.9] years, 1879 [57%] women) were included in the analysis. Of these 3289 individuals, 41 (1.2%) already had dementia. Thinner GC-IPL was associated with prevalent dementia (odds ratio per SD decrease in GC-IPL, 1.37 [95% CI, 0.99-1.90]). No association was found of RNFL with prevalent dementia. During 14 674 person-years of follow-up (mean [SD], 4.5 [1.6] years), 86 individuals (2.6%) developed dementia of whom 68 (2.1%) had Alzheimer disease. Thinner RNFL at baseline was associated with an increased risk of developing dementia (hazard ratio per SD decrease in RNFL, 1.44 [95% CI, 1.19-1.75]), which was similar for Alzheimer disease (hazard ratio, 1.43 [95% CI, 1.15-1.78]). No association was found between GC-IPL thickness and incident dementia (hazard ratio, 1.13 [95% CI, 0.90-1.43]). Conclusions and Relevance Thinner RNFL is associated with an increased risk of dementia, including Alzheimer disease, suggesting that retinal neurodegeneration may serve as a preclinical biomarker for dementia.
Article
Background: Unemployment is a risk factor for impaired mental health. Based on a large population-based sample, in this study we therefore sought to provide detailed information on the association between unemployment and depression including information on (i) differences between men and women, (ii) differences between different types of unemployment, and (iii) on the impact of material and social resources on the association. Methods: We studied 4,842 participants (18-65 years) of the population-based LIFE-Adult-Study. Depression was assessed using the Center for Epidemiological Studies Depression Scale. Employment status was divided into three groups: being employed, being unemployed receiving entitlement-based benefits, being unemployed receiving means-tested benefits. Multivariate logistic regression models were applied to assess the association between employment status and depression. Results: Statistically significantly increased depression risk was solely found for unemployed persons receiving means-tested benefits. Adjusting for differences in sociodemographic factors, net personal income and risk of social isolation, comparable associations of being unemployed and receiving means-tested benefits with elevated depression risk were found for men (Odds Ratio/OR = 2.17, 95%-CI = 1.03-4.55) and women (OR = 1.98, 95%-CI:1.22-3.20). Limitations: No conclusions regarding causality can be drawn due to the cross-sectional study design. It was not possible to assess length of unemployment spells. Conclusion: Unemployed persons receiving means-tested benefits in Germany constitute a risk group for depression that needs specific attention in the health care and social security system. The negative impact of unemployment on depression risk cannot be explained solely by differences in material and social resources. Contrasting earlier results, women are equally affected as men.
Article
Unemployment is common for those with Huntington's disease (HD), a genetic neurodegenerative disorder, and affects patients' quality of life. HD is characterized by motor disturbances, cognitive dysfunction, and psychiatric symptoms. The purpose of this article was to determine which clinical signs of HD are predictive of unemployment. Data for employed (N=114) and unemployed (N=106) HD mutation carriers were used to investigate group differences. Univariate logistic regression analyses, adjusted for age and gender, were performed to determine individual predictors of unemployment. Subsequently, a multivariate logistic regression analysis was performed, entering all significant results from the univariate analyses into one fully adjusted model to determine the strongest predictors. HD mutation carriers with lower cognitive performances and higher apathy scores were more likely to be unemployed than were HD mutation carriers with higher cognitive scores and no signs of apathy. Motor functioning was an independent predictor of unemployment but was not associated with unemployment in the fully adjusted model. Cognitive impairments, especially in the executive domain, and apathy were independent determinants of unemployment in HD mutation carriers. Motor disturbances, the clinical hallmark of HD, did not appear to be the most important predictor for work cessation. These results should be taken into consideration in clinical practice when evaluating HD patients' ability to work.
Article
Objective: To investigate whether (1) phosphorylated α-synuclein (p-syn) deposits in skin nerves could be useful in differentiating dementia with Lewy bodies (DLB) from different forms of dementia and (2) small fiber neuropathy (SFN) is associated with DLB. Methods: We studied 18 well-characterized patients with DLB (11 with autonomic dysfunction), 23 patients with nonsynucleinopathy dementia (NSD; 13 with young-onset Alzheimer disease dementia, 6 frontotemporal dementia, and 4 vascular dementia), and 25 healthy controls. All participants underwent skin biopsies from proximal (i.e., cervical) and distal (i.e., thigh and distal leg) sites to study small nerve fibers and deposits of p-syn, considered the pathologic form of α-synuclein. Results: No p-syn was detected in any skin sample in patients with NSD and controls but was found in all patients with DLB. SFN was found in patients with DLB and the autonomic denervation of skin was more severe in patients with autonomic dysfunctions. Conclusions: (1) In autonomic skin nerves, p-syn is a sensitive biomarker for DLB diagnosis, helping to differentiate DLB from other forms of dementia, although this needs to be confirmed in a larger, more representative sample; and (2) skin autonomic neuropathy is part of the DLB pathology and may contribute to autonomic symptoms. Classification of evidence: This study provides Class III evidence that p-syn in skin nerve fibers on skin biopsy accurately distinguishes DLB from other forms of dementia.
Article
Mild cognitive impairment (MCI) occurs along a continuum from normal cognition to dementia. A roadblock to earlier diagnosis and potential treatment is the lack of consistency with screening for MCI. Universal screening would be ideal, but is limited. Once a diagnosis of MCI is made, it is important for the clinician to evaluate for reversible causes. At present time, there are no pharmacologic treatments proven to slow or cure progression of MCI to dementia; nonetheless, there is evidence that lifestyle modifications including diet, exercise, and cognitive stimulation may be effective.
Article
Background Apathy, characterized by diminished motivation, is a highly prevalent neuropsychiatric symptom in dementia. However, there is a substantial knowledge gap with regard to prevalence rates, neurobiological underpinnings, and effective treatments for apathy in pre-dementia states, including mild cognitive impairment (MCI) and mild behavioral impairment (MBI). Methods We conducted a comprehensive literature search using MEDLINE, Embase, and PsycINFO databases to identify available research on apathy in prodromal dementia. Results Apathy has consistently been detected in individuals with MCI with varying prevalence rates, and only recently has literature discussed the prevalence of apathy in MBI. Few pharmacological treatments have been utilized for apathy, with galantamine and risperidone showing mild reductions in apathetic behaviors. Non-pharmacological interventions in prodromal dementia are beginning to be explored and show promise, but few studies have replicated those results. Discussion More comprehensive guidelines for diagnosing apathy and further research investigating neurobiological mechanisms of apathy in MCI and MBI are required in order to effectively treat apathetic patients in prodromal dementia.