Family caregivers role implementation at different stages of dementia

Purpose: The purpose of this study was to explore family caregivers role
implementation experiences at different stages of dementia.Patients and
methods: Forthiscrosssectional,exploratorystudy,176dyadsoffamilycaregivers
andtheircommunitydwellingelderlyrelativeswithdementiawererecruitedfromthe
neurologicalclinicsofamedicalcenterinTaiwan.TheFamilyCaregivingInventorywas
usedtoassessfamilycaregiversforcaregivingactivities,rolestrain,rolepreparation,and
helpfromothersatdifferentstagesofcarereceiversdementia.
Results: Familycaregiverscaregivingactivitieswererelatedtopatientsstagesof
dementia. For patients with mild dementia, caregivers provided more assistance in
transportationandhousekeeping.Inadditiontothesetwoactivities,familycaregiversof
patientswithmoderatedementiaprovidedmoreassistancewithmobilityandprotection.
For patients with severe dementia, family caregivers provided more assistance with
personal care, mobility and pro tection, transportation, and housekeeping. Overall,
familycaregiversreportedhavingsomepreparationtoprovidecare;themostdifficult
caregivingactivitywasidentifiedasmanagingbehavioralproblems.
Conclusion: Thisstudysresultsprovideaknowledgebasefordesigningdementia
stagespecificinterventionsinclinicalpracticeanddevelopingcommunitybased,long
term care systems for families of patients with dementia.Keywords: behavioral
problem,illnesstrajectory,rolestrain,caregivingactivity,preparedness

Introduction
Asthenumberofpersonswithdementiaincreasesworldwide,alongwiththecosts
oftheircare,theimportanceoffamilycaregivingwillincrease.Theusualcourse
ofdementiaisfrom3toover9years,withdementiasymptomscharacterizedby
changesatdifferentstages.13 Forexample,instrumentalselfcaredeficitsbegin
early in dementia, basic selfcare deficits increase as dementia advances, and
manydistressingbehavioralsymptomsdecreaseinlatedementia. 4 Thus,family
caregiversneedsandhowtheyimplementtheirrolesmightchangeduringthe
carereceiversillnesstrajectory.
Overtheillnesstrajectory,theaffectedperson,his/herfamily,andhealthprofes
sionalsmustcombinetheireffortstodeterminetheeventualoutcome,manageany
symptoms, and handle illnessassociated disabilities. 5 In terms of the illness
trajectory of dementia, its stages and severity are important to understand as
factors influencing the coping and wellbeing of family caregivers. 4,6 Indeed,

family caregivers of patients with dementia were found to have a very time
consuming decisionmaking process, especially during the phase of exploring
optionsafterdiagnosis,andtheiracceptanceofthediseasewasveryimportantin
decreasingthepatientsanxietyandresistancetocare. 7 Suchfamilycaregivers
were also found to have high levels of burden associated with patients low
cognitivelevels,behavioralproblems,andnutritionalproblems. 8 However,few
studieshavedescribedandcomparedcaregivingexperiencesatdifferentstagesof
thedementiaillnesstrajectory.Inparticular,nostudieshavefocusedonChinese
orAsianfamilycaregivers.
Duringtheillnesstrajectory, theinterpretationandmanagementofdiseaseare
influencedbythepatientsandfamilysculture.9Taiwandifferssubstantiallyfrom
Westerncountriesnotonlyinethnicity,butalsoinhealthcaresystems,clinical
practice, culture, and social organiza tion. For example, 66.5% of Taiwanese
elders live with their children,10 whereas only onefifth and onequarter of the
elderlylivewithanadultchildintheUnitedStatesandEurope, 11 respectively.
StudiesoncaregivingexperiencesconductedinWesterncountriesarenotlikelyto
explain caregiving phenomena in Taiwan. For instance, family caregivers
commitment to care in other countries may be influenced by different
socioculturalfactorsthaninTaiwanandotherAsiancountries,wherethefamilyis
thefirstlineofsupportforelderlypersonswithdementiaduetotheculturalvalue
offilialresponsibility.Adultchildrenareexpectedtotakeontheresponsibilities
ofcaringfortheiragingparents.12Indeed,theseadultchildcaregiverswerefound
tocarefortheirparentswithdementiaanaverageof43monthsandspenton
average 13.45 hours per day caregiving. 13 Under the current national health
insurancereimbursementsysteminTaiwan,homeservicesarenotsufficientto
supportthecaregivingtasksoffamilycaregiversoftheelderlywithdementia. 14
Thus,manycaregivers(34.9%)hirecareaides,whoaremostlyforeign. 13 Family
caregiversnotonlyhavetotakedirectcareoftheirolderrelativewithdementia,
but also supervise the care activities of foreign aides. Thus, caregiv ing
phenomenainTaiwanmightdifferfromthoseinothercountriesandneedtobe
furtherexplored.
A perspective on how caregivers actually carry out their caregiving role is
providedbytheinteractionistapproachtoroletheory,whichproposesthatthe
caregiverroleiscreatedbycaregivercarereceiverinteractionsandcaregivercare
receiverdyadinteractionswithothers. 15,16 Intheinteractionistapproachtorole
theory, the concept of role implementation is emphasized, ie, the tasks and
behaviors comprising the role, how role implementation is influenced by
interactions between role partners, and role preparation.16 In caregiv ing, role
implementationisthereforedefinedbycaregivingactivities(caregivingdemand),

mutualitybetweencaregiversandcarereceivers,andpreparednessforcaregiving.
Theseroleimplementationvariableswerefoundtopredictmultiplecaregiving
specificandgenericoutcomes,17,18giving
healthcareprofessionalsnewinsightsabouthowtoassistfamilycaregiversto
effectivelyimplementtheircaregiverrole. 15,19,20 Althoughfamilycaregivingfor
patients with dementia has been well studied, few studies have focused on
implementationofthecaregivingroleduringthestagesofdementia.Therefore,
thepurposeofthisstudywastoexplorefamilycaregiversroleimplementation
experiencesatdifferentstagesofdementia,includingcaregiverexperiencesof
caregiving activities, role strain, preparedness, and help from others. We
hypothesizedthatcaregivingactivities,rolestrain,preparedness,andhelpfrom
otherswouldchangeatdifferentstagesofdementia.Wefurtherhypothesizedthat
caregiver activities, role strain, and help from others would increase, and that
preparednesswoulddecrease,asthestagesofdementiaprogressed.Understanding
the roleimplementation experiences of caregivers during the dementia illness
trajectorycanprovideabasisfordevelopingspecificinterventionsforfamiliesof
patientsatdifferentstagesofdementia.

Materials and methods

study design
Acrosssectional,exploratorydesignwasusedtoexplorethecaregivingactivities,
rolestrain,rolepreparation,andhelpfromothersoffamilycaregiversforpatients
atdifferentstagesofdementia.

study setting and participants

A convenience sample of family caregivers and patients with dementia was
recruitedfromtheneurologicalwardsofa3,800bedmedicalcenterandalocal
hospitalinNorthernTaiwan.Patientswithdementiawereincludediftheymet
these criteria: 1) 65 years, 2) diagnosed with dementia by a neurologist or
psychiatrist,and3)caredforinahomesetting.Carereceiverscharacteristicsare
presentedinTable1.Familycaregiverswereincludediftheymetthesecriteria:1)
18 years and 2) having primary responsibility for the care of the elder with
dementia.Overall,therefusalratewas15%,primarilyduetonothavingtimeto
give informed consent during the clinic visit or not being interested in
participating. Of 250 family caregivers enrolled in the study, 176 (70.4%)
completedthequestionnaires.Familycaregiverscharacteristicsarepresentedin
Table2.

Procedures
The study was approved by the Institutional Review Board of Chang Gung
University,Taoyuan,Taiwanandappropriatereviewboardsatthemedicalcenter
(no 94891). Families who met the inclusion criteria were identified by clinic
neurologists,whoobtainedfamilymemberspermissionforaninvestigatorto
contact them. Families who expressed an interest were contacted by research
assistantswhofurtherexplainedthestudyandgavethemaquestionnairepacketto
complete at home and return by mail. Research assistants then contacted
participantsbytelephonetoansweranyquestionstheymighthaveandtoremind
themtosendthequestionnaireback.

MeasuresClinical

Dementia rating (CDr) scaleTheseverity

ofdementiawasdeterminedbyaneurologistusingtheCDRscale, 21 whichwas
routinelyusedtocollectclinicaldata.TheCDRscaleusesasemistructuredinter
view with both the patient and a reliable informant to assess performance of
cognitivefunctionsinsixdomains:memory,orientation,judgmentandproblem
solving,communityaffairs,homeandhobbies,andpersonalcare.Eachdomainis
ratedforlevelofimpairment:none(0),questionable(0.5),mild(1),moderate(2),
andsevere(3).Thetransculturalfeasibility,reliability,andvalidityoftheCDR
havebeenestablishedinaChinesepopulation,22 andtheCDRhasbeenusedin
dementiastudiesinTaiwan.23,24

Caregiving activities
Caregivingactivities,ie,whatandhowmuchthefamilycaregiverhastodoto
assistthecarereceiver,weremeasuredusingtheCaregivingActivitiesScaleof
theFamilyCaregivingInventory(FCI).19,25,26 This87itemscalemeasurestasks
relatedtopersonalcare(15items),mobilityandprotection(sevenitems),illness
relatedcare(19items),bankingandlegalissues(fouritems),transportation(five
items),housekeeping(threeitems),emotionalsupport(12items),managingsymp
tomsofdementia(13items),andarrangingcare(sixitems).Foreachitem,the
scoreiseither0(no)or1(yes). Thescoreforeachsubscale iscalculatedby
summing the item scores and dividing by the number of caregiving tasks the
familycaregiverindicatedthathe/sheneedstoperform.Forthisstudy,theFCI
wastranslatedandbacktranslatedtoestablishthevalidityoftheChineseversion
FCI.Reliabilityestimatesrangedbetween0.80and0.90. 19,25,26 Inthisstudy,the
internalconsistencyreliabilityoftheCaregivingActivitiesScale,assessedusing
theKuderRichardsonFormula20,rangedfrom0.60to0.90.

role strain

Rolestrain,thefeltdifficultyinfulfillingtheroleobligationsoffamilycaregiver,19
was measured by the 87item Role Strain Scale of the FCI as the degree of
difficultyperceivedbyfamilycaregiversinadministeringdifferenttypesoffamily
caregiving tasks. For each item, the score ranges from 0 (easy) to 4 (very
difficult).ThereliabilityoftheRoleStrainScaleoftheFCIhasbeenreportedto
exceed 0.70 (usually 0.80 to 0.90).19,25,26 Cronbachs alpha for the Role Strain
ScaleoftheFCIinthisstudyrangedfrom0.70to0.90.

Preparedness
Preparedness,whichreferstoacaregiversselfassessmentofhis/heradequacyfor
providingcare,wasmeasuredbyselfreportonaneightitemPreparednessScale
that rates how well caregivers think they are prepared for seven domains of
caregiving.19,25 Afinalquestionaskscaregiverstogiveanoverallratingofhow
wellpreparedtheyaretocareforthecarereceiver.Scorescanrangefrom0to32,
with0representingleastpreparedand32representingmostprepared.Cronbachs
alphasrangedfrom0.86to0.92instudiesonfamilycaregivingoffraileldersin
theUS.19,2729 ThePreparednessScalewastranslatedandbacktranslatedinthis
studytoestablishthevalidityoftheChineseversion,andCronbachsalphawas
0.92.

Amount of help from others

Amountofhelpfromothers,ie,whatandhowmuchotherpeoplehelpfamily
caregiversindeliveringcaregivingactivities,wasmeasuredusingtheHelpfrom
OthersscaleintheFCI.19,25,26Thisthreeitemscalemeasuresamountofhelpfrom
relatives,hiredaides,andfriendsandneighbors.Foreachitem,responseoptions
arenoneatall(0),alittle(1),some(2),quiteabit(3)andagreatdeal(4).The
amountofhelpfromothersiscalculatedbysummingthescoresofthethreeitems.
Scorescanrangefrom0to12,with0representingnohelpfromothersand12
representingagreatdealofhelpfromothers.Thisscalewastranslatedandback
translated in this study to establish the validity of the Chinese version, and
Cronbachsalphawas0.50.Thelowinternalreliabilitycouldhaveresultedfrom
thesmallnumberofquestions.30,31

Characteristics of elderly persons with dementia

Selfcareabilityofelderlypersonswithdementiawasmeasuredbycaregivers
reportsontheChineseBarthelIndex,whichassessesperformanceofactivitiesof
dailyliving(ADLs),32,33andtheInstrumentalActivitiesofDailyLivingIndex. 34
Elderly persons were categorized as indepen dent; only instrumental ADLs
impaired;onetotwoADLsimpaired;threetofourADLsimpaired;orfiveor

more ADLs impaired.35,36 The number of comorbidities was collected from

patients medical charts. Cognitive functioning was measured by the Chinese
versionoftheMiniMentalStateExamination(MMSE).37

Data analysis
familycaregiversofpatientswithseveredementia,moreassistancewasprovided
forpersonalcare,mobilityandprotection,transportation,andhousekeepingthan
forothercaregivingactivities.
Comparison of amount of care activities performed by caregivers at different
stagesofdementia(CDRrating),aftercontrollingforfamilycaregiversyearsof
education,showedthatcaregiversofpatientswithmoderateandseveredementia
providedsignificantlymoreoverallcareactivities(F10.21, P0.001),personal
care(F35.87, P0.001),andmobilityandprotection(F8.52, P0.001)than
caregiversofpatientswithmilddementia.Atthesametime,aftercontrollingfor
fam ily caregivers years of education, caregivers of patients with moderate
dementia provided significantly more illnessrelated care (F4.25, P0.05),
housekeeping (F3.85, P0.05), and care activities related to symptoms of
dementia(F3.72,P0.05)thancaregiversofpatientswithmilddementia.

role strain
Familycaregiversaveragerolestrainfromdoingninetypesofcareactivitiesfor
personswithmild,moderate,orseveredementiaisshowninFigure2andTable
S2.Caregiversdifficultyassociatedwithmosttypesofcaregivingactivitiesfor
patients with mild dementia ranged from easy (mean [M] 0.39, standard
deviation[SD]0.49)tonottoohard(M 0.88,SD0.67),exceptforactivities
relatedtomanagingsymptomsofdementia(M 1.23,SD 0.76),whichranged
fromnottoodifficulttosomewhatdifficult.Mosttypesofcaregivingactivitiesfor
patientswithmoderatedementia
Data were analyzed using SPSS 19.0 software. Statistical sig nificance was
determined at P0.05. Sample characteristics were analyzed by descriptive
statistics.Amonggroupdifferencesincontinuousvariablecharacteristicswere
examinedbyonewayanalysisofvariance(ANOVA).Amonggroupdifferences
incategoricalcharacteristicswereexaminedbychisquaretests.Differencesin
caregivingactivities,rolestrain,preparedness,andamountofhelpfromothers
wereexaminedbyanalysisofcovariance(ANCOVA)amongdifferentdementia
severity groups (mild, moderate, or severe dementia) after controlling for
caregivers years of education. For outcome variables that were significant in

ANCOVA,groupdifferenceswerefurtherexaminedbyScheffposthoctests.
Groupdifferencesinsingleitemsrelatedtopreparednessandamountofhelp
fromotherswerefurtherexaminedbysequentialapplicationoftheKruskal
WallisandMannWhitneyUtests.

Results
Caregiving activities
Intermsofcaregivingactivities(Figure1,TableS1),familycaregiversofpatients
withmilddementiaprovidedmoreassistancewithtransportationthanwithother
caregivingactivities.Inadditiontotransportation,familycaregiversofpatients
withmoderatedementiaprovidedmoreassistancewithmobilityandprotection
thanwithotheractivities.Forrangedfromnottoodifficult(M1.19,SD0.85)to
somewhatdifficult(M 1.65,SD 0.96),exceptforhelpingwithbankingand
legalissues(M0.58,SD0.73)andhousekeeping(M0.72,SD0.74),which
rangedbetweeneasyandnottoodifficult.Forcaregiversofpatientswithsevere
dementia,alltypesofcaregivingactivitiesrangedfromnottoodifficult(M0.99,
SD0.99)tosomewhatdifficult(M1.99,SD1.02).Themostdifficulttypeof
caregivingactivityreportedforpatientsatallthreestagesofdementia(severity
level)wasmanagingsymptomsofdementia.
Comparisonamongpatientsatdifferentstagesofdementiashowedthatcaregivers
of patients with moderate and severe dementia experienced more role strain
relatedtooverallamountofcareactivities(F12.69, P0.001)andmorerole
strainrelatedtoalltypesofcaregivingactivities,exceptforrolestrainrelatedto
managingbankingandlegalissuesandarrangingcare,thancaregiversofpatients
withmilddementia.Formanagingbankingandlegalissues,morerolestrainwas
reported by caregivers of patients with severe dementia than by caregivers of
patientswithmildandmoderatedementia(F3.43,P0.05).Forarrangingcare,
morerolestrainwasalsoreportedbycaregiversofpatientswithseveredementia
thanbycaregiversofpatientswithmoderatedementia(F14.06,P0.001).

Preparedness
Overall, familycaregivers reported being somewhat prepared forthe caregiver
role (for caregivers of patients with mild dementia, M 2.10, SD 0.70; for
caregivers of the moder ate dementia group, M 2.05, SD 0.80; and for
caregiversoftheseveredementiagroup,M 1.77,SD 1.02).Intermsofitems
measuring preparedness, the overall sample felt less prepared to make care

activitiespleasantforbothcaregiverandpatient(M1.90,SD1.0)andtoget
helpandinformationfromhealthcaresystems(M1.90,SD0.97)thanforthe
otheritems(M2.01to2.14).Althoughfamilycaregiversofpatientswithsevere
dementiafeltlesspreparedthancaregiversofpatientswithmildandmoderate
dementia,preparednessdidnotdiffersignificantlyamongthethreegroups.

help from others

Intermsofoverallhelp,familycaregiversreceivedalittlehelpfromothers(M
3.19, SD 2.59). Caregivers of patients with moderate and severe dementia
received more overall help (M 3.46, SD 2.75 and M 4.04, SD 2.77,
respectively)fromothers(F3.88,P0.05)thancaregiversofpatientswithmild
dementia(M 2.76,SD 2.35).Inparticular,caregiversofpatientswithsevere
dementiareceivedmorehelpfrompeopletheypaid(M 2.22,SD 1.59)than
caregiversofpatientswithmilddementia(SD1.00,SD1.51).Thethreegroups
of caregivers didnot differ significantly in amountof helpfrom relatives and
friends/neighbors.

Discussion
This study is the first to characterize the roleimplementation experiences at
different stages of dementia in a Taiwanese sample of family caregivers. We
found that caregivers caregiving activities were related to patients stages of
dementia.Caregiversofpatientswithmilddementiaprovidedmoreassistancein
transportationthancaregiversofpatientswithmoderateandseveredementia.This
difference might be due to persons with more advanced dementia being more
difficulttoengageinoutsideactivities,easilyresultinginfrustratingexperiences
and shame for caregivers.38,39 Caregivers provided more assistance with
housekeepingandmobilityandprotectionforpatientswithmoderatedementiaand
more assistance with personal care for patients with severe dementia than
caregivers of patients with mild and moderate dementia, respectively. These
differences might be due to increasing impairment in instrumental ADLs and
ADLs with more advanced stages of dementia, as shown in Table 1. This
possibilityissupportedbypriorreportsthatinstrumentalselfcaredeficitsbegin
earlyindementiaandbasicselfcaredeficitsincreasewithdementiaseverity. 4,40
Ourresultsalsoechoareportthattheamountandassociatedeconomiccostof
informalcaretopatientswithdementiaincreaseddramaticallyastheircognitive
impairmentprogressed.41 Familycaregiversofpatientswithmoderateandsevere
dementiaexperiencedmoredifficultyassociatedwithmosttypesofcaregiving
activities overall than caregivers of patients with mild dementia. Perceived

difficulty associated with the caregiving role in terms of the care receivers
dementiastagehasnotpreviouslybeenstudied,butonestudyfoundthat,when
spousalcaregiversoftheelderlytransitionedtoheavycaregivingover5years,
theyhadmoredepressivesymptomsandpoorerperceivedhealth. 42 Inparticular,
our study found that managing symptoms of dementia was the most difficult
caregivingactivityatallstagesofdementia.Thisresultissupportedbyareview
ofthedementiacaregivingliterature 32 thatshowsthatfamilycaregiversmental
and physical morbidity was associated with patients problem behaviors.
Similarly, family caregiver burden was associated with dementiarelated
symptoms, an association that became stronger over time, 6 and was inversely
associatedwithlowMMSEscoresandbehavioralproblems.8
Thefamilycaregiversinthisstudyreportedbeingsomewhatpreparedfortheir
role, which is less prepared than reported by US family caregivers of elderly
persons after hospital discharge19 and patients with cancer.16 Whether these
differences are due to taking care of patients with different conditions or to
cultural differences needs to be further explored. Assessing family caregivers
acceptanceofandpreparationforthecaregiverrole isimportant, since accep
tanceiscriticalindecreasinganxietyandresistancetocare. 7Itisworthnotingthat
familycaregiversinourstudyreportedfeelingonlysomewhatpreparedtoprovide
careregardlessofpatientsdementiaseverity,especiallyinmakingcareactivities
pleasantforbothcaregiverandpatientaswellasingettinghelpandinformation
fromhealthcaresystems.
Mostofthehelpreceivedbyfamilycaregiverswasfromhiredhelpers,andthe
amountofhelpincreasedastheseverityofdementiaincreased,fromonethirdof
familycaregiversofpatientswithmilddementiatooveronehalfofthefamily
caregivers of patients with severe dementia. These results are consistent with
previousfindingsthataround30%ofTaiwanesefamilycaregiversofpatientswith
dementiahadpaidassistance.43,13DespitethedifficultiesforTaiwanesefamiliesin
caringfortheirdisabledolderfamilymembersathome,duetosmallerfamilies
andtheinfluenceofindustrialization,44 mostfamilycaregiversofpatientswith
dementiastillbelievedthathomecareisthebestmethodofcare. 45 Inthepresent
study,66(37.5%)familycaregiverswereassistedbyaforeignworker,andonly
two(1.1%)hadassistancefromaTaiwaneseworker.Thesepercentagesarelower
thanthoseinapreviousreport,whichstatedthat18.7%to60%ofUSfamily
caregiversofpatientswithdementiahiredforeignworkers. 46 Hiringpaidhelpers,
especiallyfemaleforeignworkersfromSoutheastAsiancountries,isonewayfor
caregiverstomeetthecareneedsofdisabledfamilymembersinTaiwan. 44

Conclusion

Our study findings have several implications for clinical practice and policy
making.First,differentservicesandinterventionsneedtobedesignedforfamilies
ofpatientswithdementiaaccordingtotheirspecificneedsatdifferentstagesof
dementia.Forexample,communityservicesshouldbeavailabletohelppatients
with mild dementia with transportation and housekeeping. For patients with
moderate to severe dementia, services and devices are needed to help family
caregiversprotectpatientsandassistwithmobility,suchasinhomehelpers,night
helpers,andsafetymonitoringdevices.Forpatientswithseveredementia,more
intensivehelpshouldbeconsideredtoprovidepersonalcare.
Second, support and consultation programs need to be provided for family
caregiversofpatientswithdementiaatallstages,sincethesecaregiversareallless
thanoptimallypreparedregardlessofdementiastage.Inparticular,consultations
should address how to make care activities pleasant for both caregivers and
patients,aswellashowtogethelpandinformationfromhealthcaresystems.
Last,attentionneedstobepaidtothehighpercentageofhiredforeignhelpers.
Thelanguageandknowledge/skillsofforeignhelperswithregardtotakingcareof
patientswithdementianeedtobeassessed,withtrainingoffered,ifnecessary,so
thatqualitycarecanbeprovidedtoelderlypersonswithdementia.
The generalizability of our study results are somewhat limited by using a
convenience sample. The impact of this sampling, however, may have been
minimizedbythesimilaritybetweentheprofilesofoursampleandthesample
fromanearlierstudyoffamilycaregiversofpatientswithdementiainTaiwan. 4749
Thissimilarityaddstoourstudyscredibilityandimprovesthegeneralizabilityof
theresults.Asecondlimitationisthatwedidnotmeasuretheexacttimespenton
each caregiving activity, preventing a precise estimation of the amount of
caregivingactivities.Athirdlimitationwasthelimitedrangeofdementiastages.
Predementia, verysevere, andterminal stages of dementia were notassessed,
limiting understanding of the roleimplementation experiences of family
caregivers tak ing care of elderly persons with dementia at these stages. To
illuminate these phenomena, future studies should use random sampling to
representallfamiliesofpatientswithdementiaatallstagesandtoobtainamore
comprehensiveassessmentofcareactivities.
Despiteitslimitations,thisstudyexpandstheresultsofpreviousstudiesonfamily
caregivers of elderly persons with dementia by describing caregivers role
implementation experiences at different stages of dementia in Taiwan. This
informationcanprovideaknowledgebasefordevelopingcommunitybased,long
termcareservicestosupportfamiliesofelderlypersonswithdementiaandserves
asaguidefordevelopinginterventionsandfuturestudies.Asthepopulationof

AsianeldersisrapidlygrowinginWesterncountries,thisstudysresultsmaybe
applicable to other countries wherein health care providers have to take into
accounttheneedsofChinese/Taiwaneseimmigrants.

Acknowledgments
Wewouldliketothankthenursesanddoctorsintheneurologicalclinicsof
ChangGungMemorialHospitalforreferringparticipantsinthisstudy.Wewould
alsoliketothankProfessorsPatriciaGArchboldandBarbaraJStewartfortheir
assistance in developing the instruments, designing the study, and providing
insightduringtheresearchprocess.Aspecialthankstothepeoplewithdementia
and their fam ily caregivers for participating in this study. This study was
supportedbytheNationalScienceCouncil,Taiwan(NSC932314B182068and
NSC952420H182002KF); Chang Gung Medical Foundation
(CMRPD1B0332); and Ministry of Education, Republic of China (Taiwan)
(EMRPD1D0261).

Author contributions
HueiLing Huang was responsible for study concept and design, instrument
development,dataentryandanalysis,interpretationofdata,andpreparationofthe
manuscript.

YeaIngLShyuwasresponsibleforstudyconceptanddesign,
interpretation of data, and preparation of the manuscript. Min Chi Chen was
involvedinanalysisandinterpretationofthedataanalysisandpreparationofthe
manuscript.ChinChangHuang,HungChouKuo,SienTsongChen,andWen
Chuin Hsu were involved in recruitment of subjects, data collection, and
preparationofthemanuscript.

Disclosure
Theauthorsreportnoconflictsofinterestinthiswork.