SUPPORT INGINFORMALCAREG IVERSTHROUGHTHEDEMENT IA JOURNEY : APR IMARYCAREAPPROACH by AmandaL .M cKn igh t BS cN ,Un iv e r s i tyo fth eF r a s e rV a l l ey ,2004 PRO JECTSUBM ITTEDINPART IALFULF ILLMENTOF THEREQU IREMENTSFORTHEDEGREEOF MASTEROFSC IENCEIN NURS ING :FAM ILYNURSEPRACT IT IONER UN IVERS ITYOFNORTHERNBR IT ISHCOLUMB IA Jun e2016 ©Am and aM cKn igh t ,2016 i i   Ab s t ra c t In fo rm a lc a r eg iv e r so fp e r son sw i thd em en t i ao f t enexp e r i en c es ign i f i c an ts t r e s so r s wh i chm ayr e su l tind e t r im en t a lphy s i c a l ,p sy cho log ic a l ,so c i a l ,andf in an c i a lcon s equ en c e s . Ino rd e rfo rp r im a ryc a r ep rov id e r stoad equ a t e lysuppo r tth i sbu rg eon ingg roupo f c a r eg iv e r sag r e a t e rund e r s t and ingo fth e i rexp e r i en c e sandn e ed si se s s en t i a l .Th i sl i t e r a tu r e r ev i ews e ek stod e t e rm in ehowp r im a r yc a r ep rov id e r sc anb e s tsuppo r tin fo rm a lc a r eg iv e r s o fp e r son sw i thd em en t i ath roughth ed em en t i ajou rn ey .S tud i e sw e r ein c lud edth a t ex am in edth en e ed so rexp e r i en c e so fin fo rm a lc a r eg iv e r so fp e r son sw i thd em en t i a . Add i t ion a l ly ,s tud i e sth a tex am in edpr im a ryc a r e b a s edin t e rv en t ion sa im eda timp rov ingth e c a r eg iv ingexp e r i en c efo rth e s eind iv idu a l sw e r ea l soin c lud ed.Fou rth em e sem e rg edf rom an a ly s i so fth el i t e r a tu r e :th eh e a l thsy s t em ;f am i lyandcommun i ty ;r e l a t ion sh ipw i thth e c a r er e c ip i en t ;andp e r son a ljou rn ey .F ind ing sf romth el i t e r a tu r ea r ed i s cu s s edand r e comm end a t ion sm ad einth econ t ex to fc r e a t ings t r a t eg i e stoin c r e a s eaw a r en e s sandc a r e fo rin fo rm a lc a r eg iv e r so fp e r son sw i thd em en t i a .Imp l i c a t ion sfo rp r im a ryc a r ep rov id e r p r a c t i c ein c l ud een su r ingt im e lyd i agno s i s ,co l l abo r a t ingw i thamu l t id i s c ip l in a ryt e am , condu c t ingin fo rm a lc a r eg iv e ra s s e s sm en t s ,p rov id ingedu c a t ion ,r a i s ingpub l i caw a r en e s s , andp rov id ingan t i c ip a to rygu id an c e .Fu r th e rr e s e a r chi sn e ed edtoexp lo r eth eexp e r i en c e s o fm a l eandcu l tu r a l lyd iv e r s ec a r eg iv e r s .I ti sth roughth eid en t i f i c a t ionandv a l id a t iono f in fo rm a lc a r eg iv e r ’ sn e ed sth a tapp rop r i a t ein t e rv en t ion sc anb ed ev e lop edand imp l em en t ed ,thu sp rov id ingcomm en su r a t esuppo r tfo rin fo rm a lc a r eg iv e r so fp e r son sw i th d em en t i ath roughth e i rd em en t i ajou rn ey s . K e ywo rd s : in fo rm a lc a r eg iv e r ,d em en t i a ,p r im a ryc a r e ,suppo r t ,jou rn ey i i i   A cknow l edg em en t s Iwou ldl ik etoexp r e s smys in c e r eg r a t i tud etoth etwom emb e r so fmysup e rv i so ry comm i t t e e ,C a th a r in eS ch i l l e rRN ,BS cN , MS c ,JD ,PhD ( c )andH e l enBou rqu eRN ,BS cN , MSNNP (F ) .Th ecomp l e t iono fth i sp ro j e c twou ldno th av eb e enpo s s ib l ew i thou tyou r unw av e r ingsuppo r t ,p a t i en c e ,andexp e r t i s e .Youh av ebo thb e enin c r ed ib lyg en e rou sw i th you rt im eande f fo r t sinh e lp ingm etoa ch i ev emygo a l .You rgu id an c eth roughou tth e w r i t ingo fth i sr ev i ewh a sh e lp edm etoa ch i ev ewh a tId idno tth inkw a spo s s ib l e .Iwou ld a l sol ik etos endah e a r t f e l tth ankyoutomyf am i lyandf r i end swhoh av es a c r i f i c edsomu ch tosuppo r tm eth roug hou tth i sjou rn ey .Icou ldno th av edon eth i sw i thou tyou .L e e ,th ank youfo rb e ingbymys id e ,k e ep ingm eg round ed ,andm ak ingm el aughev e ryd ay . Mom ,you h av egon eabov eandb eyondtoh e lpm eth roughth ep rog r am .Youa r e ,anda lw ay sw i l lb e , myg r e a t e s tin sp i r a t ion .E l l a ,youa r eth esh in ings t a rth a th a sk ep tm emo t iv a t edtocomp l e t e myg r adu a t es tud i e s .Ilov eyoutoth emoonandb a ck . iv   TABLEOFCONTENTS Ab s t r a c t i i A cknow l edg em en t s i i i T ab l eo fCon t en t s iv L i s to fF igu r e s v i i In t rodu c t ion 1 Ch ap t e rOn e B a ckg roundandCon t ex t 5 Th eC a r eg iv ingJou rn ey 5 D em en t i a :Th eImp e tu so fth eJou rn ey 9 G e t t ingtoKnowth eT r av e l e r s : Whoa r eTh eC a r eg iv e r sandWh a ti sth e Ro l eo fE a chTyp e ? 13 Th eRo adL e s sT r av e l ed :Th eImp a c to fC a r eg iv ingonIn fo rm a l C a r eg iv e r s 18 S t r e s so rs 18 Phy s i c a lImp a c t s 19 P sy cho log i c a lImp a c t s 21 So c i a lImp a c t s 23 F in an c i a lImp a c t s 23 Bu rd en 24 Ch ang ingW e a th e rA longth eJou rn ey :F a c to r sth a tIn f lu en c eBu rd en 25 E thn i c i ty 26 Ag eandG end e r 27 R e l a t ion sh ipB e tw e enth eC a r eg iv e randC a r eR e c ip i en t 28 C a r eg iv e r s ’OwnT r a i t s 29 S ev e r i tyo fD i s e a s eandC a r eR e c ip i en tB eh av iou r s 29 So c i a lSuppo r t 30 S e rv i c eU t i l i z a t ion 32 Th eT r av e lGu id e :Ro l eo fth ePCPinSuppo r t ingICPWD 34 E f f e c t iv e lyGu id ingICPWDTh roughth e i rJou rn ey s :AnApp ro a chto C a r e 35 A s s e s sm en to fICPWD :D e t e rm in ingN e ed sTh roughth eJou rn ey 39 P rov id ing“Ro ad s id eA s s i s t an c e ” :Int e rv en t ion sandE th i c a lI s su e s 40 Ch ap t e rTwo S e a r ch M e thod In c lu s ionandEx c lu s ionC r i t e r i afo rL i t e r a tu r eCon s id e r a t ion R e su l t sandS e l e c t iono fA r t i c l e sfo rR ev i ew 44 45 47 Ch ap t e rTh r e e F ind ing s Th eC a r eg iv e rJou rn ey :F romth eB eg inn ingtoth eEnd Pu l l ingOu to fth eD r iv ew ay :Th eB eg inn ingo fth eJou rn ey 49 49 49 v   Onth eRo ad :Th ejou rn eyCon t inu e sTh roughth eM idd l eS t ag e s 53 R e a ch ingth eEndo fth eRo ad :N e arth eEndo fth eJou rn ey 64 In fo rm a lC a r eg iv e rN e ed sTh roughou tth eC a r eg iv ingJou rn ey 65 In fo rm a lC a r eg iv e rA s s e s sm en t 69 P rov id ing‘Ro ad s id eA s s i s t an c e ’ :HowE f f e c t iv eA r eP r im a ryC a r eB a s edIn t e rv en t ion s ? 70 P sy cho so c i a lIn t e rv en t ion s 71 Edu c a t ion a lIn t e rv en t ion s 74 Co l l abo r a t iv eC a r eIn t e rv en t ion s 78 C l in i c a lP r a c t i c eGu id e l in e s 82 Ch ap t e rFou r   Ch ap t e rF iv e D i s cu s s ion 87 N e ed sandExp e r i en c e so fICPWD :Th eImp a c to fth eC a r eg iv ing Jou rn ey 88 Th eH e a l thSy s t em D i agno s i s 88 Edu c a t ion 90 Commun i c a t ionB e tw e enPCP sandICPWD 91 T r an s i t ion a lC a r e 91 Suppo r tS e rv i c e s 92 F am i lyandCommun i ty 93 R e l a t ion sh ipw i thth eC a r eR e c ip i en t 95 P e r son a lJou rn ey 96 Po s i t iv eA sp e c t so fC a r eg iv ing 97 “Ro ad s id eA s s i s t an c e ” :Th eE f f e c t iv en e s so fSuppo r t iv eIn t e rv en t ion s98 C l in i c a lP r a c t i c eGu id e l in e s 101 Th eRo l eo fth eNPandImp l i c a t ion sfo rNPP r a c t i c e 102 R e comm end a t ion s R e comm end a t ion sfo rC l in i c a lP r a c t i c e T im e lyD i agno s i s Endo fL i f eP l ann ing Suppo r tDu r ingO f f i c eV i s i t s Th eU s eo fAn a log i e s Imp rov ingExp e r i en c e sDu r ingT r an s i t ion a lC a r e Co l l abo r a t iv eC a r e                                                                               F am i lyC en t r edApp ro a chtoC a r e F am i ly M e e t ing s R e comm end a t ion sfo rEdu c a t ion Edu c a t ionfo rICPWD An t i c ip a to ryGu id an c e Edu c a t ionfo rPCP s Edu c a t ionfo rth ePub l i c R e comm end a t ion sfo rR e s e a r ch 111 111 111 112 113 115 116 117 118 119 119 119 120 121 121 122 Con c lu s ion 124   v i R e f e r en c e s 126 App end ixA : Mo s tCommonTyp e so fD em en t i a 152 App end ixB :D em en t i aS t ag ingS c a l e s 153 App end ixC :Ex amp l eo fTop5S t r a t egy :G r andp a ' sB iog r aphy 155   App end ixD :A‘Ro ad M ap ’fo rth eD em en t i aJou rn ey :K eyR e comm end a t ion sfo rNP P r a c t i c e 15 6 App end ixE:S e a r chS t r a t egyD i ag r am   158 v i i   L i s to fF igu r e s   F igu r e1 .Commonsubtyp e so fd em en t i a F igu r e2 .Th ep rog r e s s iono fc a r edu r ingth ep rog r e s s iono fd em en t i a   F igu r e3 .So c i a le co log i c a lmod e lfo rp r im a ryc a r eb a s edsuppo r t iv es t r a t eg i e sfo r ICPWD 11 14 107 1   In t rodu c t ion Fo rm e rF i r s tL adyRo s a lynnC a r t e ron c es t a t ed ,“ th e r ea r eon lyfou rk ind so fp eop l e inth i swo r ld :tho s ewhoh av eb e enc a r eg iv e r s ;tho s ewhocu r r en t lya r ec a r eg iv e r s ;tho s ewho w i l lb ec a r eg iv e r s;andtho s ewhow i l ln e edc a r eg iv e r s ”(C a r t e r&Go l an t ,1994 ,p .3 ) .Th i s s t a t e m en ta cknow l edg e sth es ign i f i c an c eo fth ec a r eg iv ingro l e ,a sw e l la sth eimpo r t an c eo f r e cogn i z ingandsuppo r t ingind iv idu a l swhop rov id eth i sc a r e .Po l i cym ak e r s ,r e s e a r ch e r s , andh e a l thc a r ep rov id e r sa r ein c r e a s ing lya cknow l edg ingth ev a lu eandb en e f i to fin fo rm a l c a r ep rov i s iontobo thc a r er e c ip i en t sandtoso c i e tya sawho l e(P e a co cke ta l . ,2010 ;Ro s ae t a l . ,2010 ;S chu l t z& M a t i r e ,2004 ) .How ev e r ,S a l f i ,P lo eg ,andB l a ck(2005 )r epo r t edth a t in fo rm a lc a r eg iv e rn e ed sa r eo f t enun a r t i cu l a t edandunm e t .Fu r th e r ,ev id en c eb a s ed in fo rm a t ionabou tth eapp l i c a t iono fbo thin fo rm a lc a r eg iv e rn e ed sa s s e s sm en t sand suppo r t iv ein fo rm a lc a r eg iv e rin t e rv en t ion sinth ep r im a ryc a r es e t t ingi sno t ab lyl a ck ing (F e inb e rg ,2002 ;S chu l z& M a t i r e ,2004 ) . P eop l eo fa l lag e sandw i thd iv e r s eh e a l thc a r en e ed sw i l lpo t en t i a l lyr equ i r ec a r ea t som epo in tinth e i rl iv e s ;how ev e r ,i ti so ld e radu l t swhop r edom in an t lyp rov id eandr e c e iv e in fo rm a lc a r e .A sth enumb e ro fo ld e radu l t sinou rpopu l a t ioncon t inu e stor i s e ,th en e edfo r in fo rm a lc a r eg iv e r sw i l lcon cu r r en t lyin c r e a s e .Th eag ingpopu l a t ioni s ,inf a c t ,th ef a s t e s t g row ings e c to ro fou rpopu l a t ion(K an e ,2011 ) .Th ein c r e a s einth enumb e ro fs en io r sinou r commun i t i e sm e an sth a tth enumb e ro find iv idu a l sw i thd em en t i aw i l lcon t inu etor i s ea s w e l l .Th eGov e rnm en to fC an ad a(2016 )r epo r t sth a tapp rox im a t e ly395 ,000C an ad i an sov e r th eag eo f40l iv ew i thd em en t i a ,andth enumb e ro fp eop l ed i agno s edw i thd em en t i ai s p r ed i c t edtodoub l eby2030andmo r eth ant r i p l eby2050(C an ad i anIn s t i tu t e so fH e a l th R e s e a r ch[C IHR ] ,2015 ) . 2   H e a l thcond i t ion ssu cha sd em en t i a ,wh i cha r emo s to f t ena s so c i a t edw i thsu chan ag ingpopu l a t ion ,a r ec au s inganin c r e a s edd em andfo rr e s id en t i a lc a r eb ed sandfo rm a lc a r e s e rv i c e s(C an ad i anIn s t i tu t efo rH e a l thIn fo rm a t ion[C IH I ] ,2010 a ) .Th i sth enr e su l t sina n in c r e a s edn e edfo rgov e rnm en t fund edh e a l thc a r eexp end i tu r e s .Th esu s t a in ab i l i tyo fth e h e a l thc a r esy s t emi sd ep end en tonan e two rko fin fo rm a lc a r eg iv e r swhop rov id ec a r eand s uppo r ttos en io r sa thom eino rd e rtoavo idth ep ro sp e c to fin s t i tu t ion a l i z a t ionfo ra slonga s po s s ib l e(C IH I ,2010b ) .H e a l thc a r esy s t em sw i th inC an ad aa r ecu r r en t lysh i f t ingth efo cu s aw ayf romr e s id en t i a landa cu t ec a r etow a rdcommun i ty b a s edc a r efo rs en io r sino rd e rto en su r easu s t a in ab l eh e a l thc a r esy s t emfo rC an ad i an s(C IH I ,2010 a ) .How ev e r ,th i ssh i f th a s th es imu l t an eou se f f e c to fp l a c ingin c r e a s ingp r e s su r eonin fo rm a lc a r eg iv e r s ,in c lud ing in fo rm a lc a r eg iv e r so fp e r son sw i thd em en t i a( ICPWD ) ,top rov id ec a r efo rth e i rlov edon e s fo rlong e rp e r iod so ft im einth ehom eenv i ronm en t . A l thoughc a r ep rov i s ionbyICPWDmo s to f t enb en e f i t sbo thth ec a r er e c ip i en tand so c i e tya sawho l e ,th en eg a t iv ee f f e c t so fc a r eg iv ingonICPWDc ana l sob econ s id e r a b l e andshou ldno tb ed i s coun t ed(S chu l t z& M a t i r e ,2004 ) .Thu s ,th e r ei sac ru c i a ln e edtof ind th emo s te f f e c t iv ew ay sbywh i chtosuppo r tth e s ein fo rm a lc a r eg iv e r s(Dugg l eby ,Sw ind l e , &P e a co ck ,2014 ;W in t e r&G i t l in ,2006 ) .F ind ingw ay stom e e tth en e ed so fICPWD th roughou tth e i rc a r eg iv ingjou rn ey si sac r i t i c a lcon t r ibu t ionth a tp r im a ryc a r ep rov id e r s (PCP s )mu s tend e avou rtoa ch i ev e . I s su e sth a tICPWDf a c ea r eo fp a r t i cu l a rimpo r t an c einp r im a ryc a r e(N i cho l se ta l . , 2009 ) ,a sm o s tind iv idu a l sw i thd em en t i aandth e i rf am i lym emb e r sr e c e iv ec a r ev i ap r im a ry c a r ec l in i c s(Au s t rome ta l . ,2004 ) .PCP s ,su cha sF am i lyPhy s i c i an sandNu r s eP r a c t i t ion e r s (NP s ) ,a r eo f t enth ef i r s tandr e cu r r en tcon t a c tfo rICPWD(B e l l ee ta l . ,2006 ;F i l l i t , 3   Knopm an ,Cumm ings ,&App e l ,1999 ;G r e enwood ,P e lon e ,&H a s s enk amp ,2016 ) .PCP s a r emo s to f t eninanid e a lpo s i t iontoconn e c tw i thin fo rm a lc a r eg iv e r s ,id en t i fyth ech ang ing n e ed so ftho s ec a r eg iv e r s ,andtod ev e lopandimp l em en tsuppo r t iv ein t e rv en t ion sth a ta r e mo s tapprop r i a t efo re a chind iv idu a lc a r eg iv e r .Th i si sap ro found lyimpo r t an ttop i cfo r PCP stocon s id e rs in c em a in t a in ingth ew e l lb e ingo fin fo rm a lc a r eg iv e r si sno ton ly b en e f i c i a ltoth ec a r eg iv e r ,a si tg en e r a t e sf avou r ab l eou t com e sfo rth ec a r er e c ip i en tw i th d em en t i a ,bu ti ta l somo r eb ro ad lysuppo r t sasu s t a in ab l eh e a l thc a r esy s t em .Fo rin s t an c e , th ew e l l b e ingo fth eICPWDi so f t enfund am en t a ltoth ec a r er e c ip i en tb e ingab l etor e c e iv e suppo r t iv es e rv i c e sinth ecommun i tyin s t e ado fb e ingp l a c edinr e s i d en t i a lc a r e(F am i ly C a r eg iv e rA l l i an c e ,2003 ) .W i l z ,S ch inkö th e ,andSo e l ln e r(2011 )ag r e e ,s t a t ingth a ti ti s“ a so c i a ln e c e s s i ty ”(p .115 )top rov id esuppo r ttoICPWDino rd e rtom a in t a inagoodqu a l i ty o fl i f e(QOL )fo rbo thICPWDandth e i rc a r er e c ip i en t s .ICPWDwhosu c c e s s fu l lym an ag e th ec a r eg iv e rro l eno ton lyp rov id eb e t t e rc a r etoth ec a r er e c ip i en tbu tth eya l soa c ta sa v a lu ab l esou r c eo fin fo rm a t ionfo rth ePCPandc anth e r ebya s s i s tinmo r ee f f e c t iv e ly gu id ingth ec a r eo fth ep a t i en tw i thd em en t i a .Fo rex amp l e ,con t r ibu t ion sbyICPWDo f t en p rov id eth ein f r a s t ru c tu r euponwh i chd em en t i ac a r ep l an sfo rp a t i en t sa r ebu i l t(And e r son& J eh a an and an ,2011 ) .B e r th e l s enandK r i s t en s son(2015 )ag r e e ,s t a t ingth a tICPWDa r enow f r equ en t lya c t inga sane s s en t i a lr e sou r c etoth ep a t i en ta sw e l la stoth eh e a l thc a r e p rov id e r s . Th epu rpo s eo fth i sin t eg r a t iv el i t e r a tu r er ev i ewi stoan sw e rth er e s e a r chqu e s t ion : howc anPCP sb e s tsuppo r tICPWDth roughth ed em en t i ajou rn ey ?Ino rd e rtoan sw e rth e abov equ e s t ion ,l i t e r a tu r ew a sid en t i f i edth roughanex t en s iv es e a r chth a tadd r e s s ede i th e r th el iv edexp e r i en c e sandn e ed so fICPWDo rth ep r im a ryc a r e b a s edin t e rv en t ion sa im eda t 4   imp rov ingth ec a r eg iv ingexp e r i en c e sfo rICPWD( i ti stob eno t edth a t ,a l thoughno ta fo rm a la c ronym ,ICPWDw a scho s enfo ru s etoaddb r ev i tytoth er ev i ew ) .Th ef ind ing so f th el i t e r a tu r ew i l lb esyn th e s i z edandd i s cu s s ed .Fo l low ingth ed i s cu s s ion ,r e comm end a t ion s fo rp r a c t i c e ,edu c a t ion ,andr e s e a r chw i l lb edo cum en t ed . Th efo l low ingch ap t e rs e ek stop rov id ein s igh tin toth ep e r son a l ,so c i e t a l ,andh e a l th sy s t emch a l l eng e sth a tICPWDc anf a c eth roughou tth e i ro f t enlonganda rduou sc a r eg iv ing jou rn ey s ,a sw e l la sth ech a l l eng e sth a tPCP sm ayen coun t e rwh i l es t r iv ingtosuppo r tth i s un iqu eg roupo fc a r eg iv e r s .F i r s t ,myownf am i lym emb e rs ’exp e r i en c e sa sICPWDw i l lb e sh a r edtop rov id eanex amp l eo fin fo rm a lc a r eg iv inginaC an ad i ancon t ex tandtojux t apo s e th e i rexp e r i en c e sw i tho th e rICPWDf romd i f f e r e n tg eog r aph i c a la r e a s .L i t e r a tu r ew i l lth en b ed i s cu s s edth a ti l lu s t r a t e sth ec a r eg iv ingro l eandth eimp a c tth a tc a r eg iv ingc anh av eon ICPWD .T h efund am en t a lro l ePCP sp l ayinsuppo r t ingICPWDinth ecommun i tyw i l lb e p r e s en t ed .Th en,th ee f f e c t s th a tsu ppo r t iv ein t e rv en t ion sfo rICPWDm ayh av eonth el iv e s o fICPWDw i l lb eh igh l igh t ed . 5   Chap t e r1 :Ba ckg roundandCon t ex t Th eCa r eg iv ingJou rn ey Anody s s eyc anb ed e f in eda s“ alongs e r i e so fw and e r ing so radv en tu r e s ,e sp e c i a l ly wh enf i l l edw i thno t ab l eexp e r i en c e s[o r ]h a rd sh ip s… ”( “Ody s s ey ” ,2016 ) .Th ec a r eg iv e r ’ s exp e r i en c e sinc a r ingfo rap e r sonw i thd em en t i ac anc e r t a in lyb eequ a t edtoth i styp eo f jou rn ey .I ti sth etyp eo fjou rn eyth a tnoon ebook sinadv an c e ,noon ep a ck sfo r ,andnoon e w i sh e stot ak e ,bu ti ti sanadv en tu r enon e th e l e s s .Fo rsom e ,i ti safo rmo fsp i r i tu a ljou rn ey , a sv i r tuou ss t ep sa r et ak endownanun ev enp a thw i thth een t i c em en to fp e r son a l en l igh t enm en tsh in inga tth ed e s t in a t ion .How ev e r ,i tc ana l sob each a l l eng ingand s e e m ing lyun r e l en t ingt r ekfo ro th e r sa sth eyend e avou rtoju s tm ak ei tth roughtoth eendin on ep i e c e .A l thoughth ejou rn eym ays e emfo rm id ab l ea tt im e s ,s ev e r a lf a c to r s ,in c lud ingth e l ev e lo fso c i a lsuppo r tav a i l ab l e ,p r ev iou sc a r eg iv ingexp e r i en c e s ,andth ec a r eg iv e r ’ sown p e r son a lch a r a c t e r i s t i c s ,c anh e lpc a r eg iv e r stom ak ei tth roughy e tano th e rd ayo fth e c a r eg iv e rody s s ey . M emb e r so fmyownf am i lyh av eemb r a c edth ec a r eg iv ingjou rn eyino rd e rto suppo r tmyp a t e rn a lg r and f a th e r ,whow a sd i agno s edw i thd em en t i aa tth eag eo f82 . G r andp aw a sd i agno s edw i thA l zh e im e r ’ sd i s e a s eandv a s cu l a rd em en t i a(m ix edd em en t i a ) in2010 ,app rox im a t e lytwoy e a r sa f t e rp rob l em sw i thh i sm emo ryf i r s tb e c am eapp a r en tto myG r andm a .Ju s tp r io rtomyg r andp a r en t smov ingou to fth e i rhom eo f42y e a r sin toan ap a r tm en t ,G r andm ab eg anno t i c ingsm a l lno t i c e ab l ecogn i t iv ech ang e sinG r andp a . A l thoughG r andp a ’ sphy s i c a lfun c t ion ingd e t e r io r a t edf a i r lyr ap id lys in c e2014 ,h i s cogn i t iv eimp a i rm en ts t e ad i lyd e t e r io r a t edf romd i agno s i stod e a th .H esu f f e r edf roms ev e r a l f a l l sa thom e .H esu r r end e r edh i sd r iv e r ’ sl i c en s eandb e c am ein c r e a s ing lyd ep end en tonmy 6   G r andm a .Ov e rth ey e a r s ,h eb e c am eun ab l etom an ag eh i sf in an c e so rm ed i c a t ion . G r andm a ’ sro l e sandr e spon s ib i l i t i e sin c r e a s eda sG r andp a ’ sn e ed sr eg a rd ingm an ag em en to f th ehou s eho ld ,f in an c e s ,shopp ing ,m ed i c a t ionm an ag em en t ,t r an spo r t a t ion ,andp e r son a l c a r ein c r e a s ed .G r andp ad idno tw i l l ing lya c c ep thom esuppo r ts e rv i c e sdu etof r equ en t ch ang e sinsuppo r ts t a f f ;th e r e fo r e ,a f t e ra c c ep t ingh e lpfo rasho r tp e r iodo ft im e ,th e s e rv i c e sw e r ec an c e l l ed .G r andm asu f f e r sf romh e rownh e a l thi s su e s ,in c lud ingh e a r t f a i lu r e ,a s thm a ,an em i a ,ch ron i cp a in ,andf a i r lyr e c en t ly ,af r a c tu r edc e rv i c a lsp in ea f t e r t r ipp ingandf a l l inga tasho pp ingc en t r e .A l thoughmyG r andm ah a saw a r r io rsp i r i t ,h e r owna i l ingh e a l thm e an tth a tsh ew a sun ab l etop rov id ec a r etoG r andp as ing l e h and ed ly . My Aun tth enm ad eth ed e c i s iontomov eaw ayf romh e rg rownch i ld r eninOn t a r ioino rd e rto a s s i s tmyg r andp a r en t sw i thth e i rn e ed s .Sh eandmyUn c l eso ldth e i rhou s einOn t a r ioand mov edtoahou s ew i th intwob lo ck so fmyg r andp a r en t s . MyAun tb eg anwo rk ingsoona f t e r a r r iv inginB r i t i shCo lumb i aandcon t inu edtowo rkwh i l ea l sop rov id ingc a r etomy g r andp a r en t s .Th efo l low ingi sanex c e rp tf romth el iv edexp e r i en c eo fmyG r andm aand Aun tabou tth e i rexp e r i en c e sw i thmyG r andp aa f t e rh eh adb e end i agno s edw i thd em en t i a . Th er ep e t i t iv en a tu r eo fth efo l low ingan e cdo t e sr e f l e c t sth er ep e t i t iv en a tu r eo fh i s b eh av io u r sandth ei s su e sth a tth eyw e r er equ i r edtocon f ron tonana lmo s td a i lyb a s i s . Y e tano th e rda yo flaugh t e r ,a sth e yr em in i s c eabou tCa r ibb eanho l ida y sw i thth e i r fam i l yandgoodt im e sw i thf r i end s .O lds to r i e stha tha v eb e ento ldaga inandaga in .S to r i e s tha t ,a sh et e l l sth em ,o f t enb e com econ vo lu t edo rt ra i lo f fw i thou tanend inga sd i s t ra c t ion s e t sin .Y e tano th e rda yo fa rgu inga sG randmaa s k sh imth esam equ e s t ionr ep ea t ed l y ,and a f t e rm inu t e so fs ea r ch ingth ed ep th so fh i sm emo r y ,h ecan ’ tf indth ewo rd sh ei ss ea r ch ing fo r ,th enfo rg e t sth equ e s t ionen t i r e l y .Y e tano th e rda yh ei sawa k ea tth r e ea .m .ma k ing   7 co f f e e ,g e t t ingd r e s s ed ,b e l i e v ingtha th ei sonh i swa ytowo r k .Y e tano th e rda yo fb ro k en s l e ep ,o fongo ingfa t igu e .Y e tano th e rda yo ff ru s t ra t ionandag i ta t iona sh et i r e l e s s l ycomb s th roughh i sf inan c ia ls ta t em en t s ,c e r ta intha tth eban k sa r es t ea l ingf romh im .Y e tano th e r da ytha tm yAun tm i s s e swo r ktod r i v eth emtoappo in tm en t s ,wh e r eth e ys i tandt r ytoma k e s en s eo fin c r ea s ing l ycomp l i c a t edd iagno s e sandt r ea tm en tp lan s .Y e tano th e rda ya s G randmal ea v e stop i c kh imupf romh i sr e sp i t eda yp rog ram ,andsh et e l l sm e“dono tca l l i tda y ca r e ,o rh ew i l ln e v e rgoaga in” .“Som eda y sh el i k e si t ,som eda y sh edo e sn ’ t ”.“H e do e sn ’ tl i k eth efood ”.“ If e e lgu i l t ys end ingh imwh enh edo e sn ’ twan ttogo” ,sh esa y s .Y e t ano th e rda ytha tG randmaha st ea r sinh e re y e s ,un su r ei fh ew i l lr em emb e rth enam eo fh i s g rand ch i ld r enwh enth e yca l l .Y e tano th e rda yinwh i chG randmac lamp sth elo c konth e s t e e r ingwh e e lo fth eca rfo rf ea rh ema yfo rg e th ecannolong e rd r i v eanda t t emp ttog e t b eh indth ewh e e l .Sh ef e e l stha tsh ecan ’ tta k eh i sk e y sawa y ,can ’ tta k eawa ywha tl i t t l e ind ep end en c er ema in s .Y e tano th e rda ywh e r eG randmai sa tasp e c ia l i s tappo i n tm en tfo r h e rownh ea l thi s su e s .Y e tano th e rda ywh e r esh es ign sh e r s e l fou to fth eho sp i ta l p r ema tu r e l yino rd e rtog e thom etoca r efo rh e rhu sband .Y e tano th e rda yinwh i chh ei sin th eba c ko fanambu lan c ew i ths e v e r eh ypog l y c em iaa f t e rinad v e r t en t l ym i x inguph i slong andsho r ta c t ingin su l in .Y e tano th e rda ywh enth e ys i tinth eho sp i ta lf e ed ingh imfoodf rom hom etoen su r eh eea t s .Y e tano th e rda ywh e r eh ei sh ea v i l ys eda t eda f t e rth enu r s ings ta f f adm in i s t e r edm ed i ca t iontod ea lw i thh i sag i ta t ion .Y e tano th e rda ytha tm yAun ta im l e s s l y wand e r sa roundh e rhom e ,soo v e rwh e lm edw i thg row ingr e spon s ib i l i t i e sands t r e s stha tsh e i sunab l etocomp l e t eth es imp l eta s ktha tsh eo r ig ina l l ys e tou ttodo .Y e tano th e rda ytha t th e ys t rugg l etona v iga t eth eh e a l thca r es y s t em ,jugg l ingp e rp e tua lm ed i ca lappo in tm en t s , a s s e s sm en t s ,andcommun i t ys e r v i c e s .Y e tano th e rda yinwh i ch ,a l thoughh ei sph y s i ca l l y 8   p r e s en t ,th e yg r i e v eth elo s so fth ehu sbandandfa th e rth e yon c ekn ew .Y e tano th e rda yin wh i chth e ye xp e r ien c eu t t e rlon e l in e s sa sf r i end sandfam i l ys topv i s i t ingb e cau s ep eop l edo no tknowhowtoh e lpo rwha ttosa ytoth e“ c ra z yo ldcoo t” .F i f t y f i v ey ea r o ldf r i end sh ip s ha v ed i s s ipa t ed ,w i thon l yfad ingm emo r i e stoc l ingtonow .“ I fsom eon ei sd iagno s edw ith can c e r ,p eop l eb r ingca s s e ro l e sandhug s . Wh ensom eon ei sd iagno s edw i thd em en t ia , p eop l es topcom ing ”.Tha t ’ sth eha rd e s tpa r to fth i sd i s ea s e”sh et e l l sm e ,“ f e e l ingso a lon e” . Th eev en t sp r e s en t edabov ei l lus t r a t eju s tsom eo fth em anych a l l eng e sth a tmyown G r andmo th e randAun tf a c edinth econ t ex to fb e ingth ein fo rm a lc a r eg iv e r so fmyG r andp a . How ev e r ,su chexp e r i en c e sa r eno tun commonfo rm anyICPWD .Th ec a r eg iv ingexp e r i en c e i sdyn am i candcomp l ex ,y e td em en t i ac a r eg iv e r so f t enf a c esu chd a i lys t rugg l e se i th e ra lon e o rw i thm in im a lou t s id esuppo r t .Th i so f t enl e ad stoth ec a r eg iv e rt ak ingth ec a r er e c ip i en tto th eho sp i t a la safo rmo fr e sp i t ewh enth ein fo rm a lc a r eg iv e rb e com e sun ab l etocop ew i th th et r em endou sd em and so fth ec a r eg iv ingro l eo rw i thana cu t ech ang einth ec a r e r e c ip i en t ’ sh e a l ths t a tu s .Ro s eandLop e z(2012 )ag r e e ,s t a t ingth a tind iv idu a l sw i th d em en t i aexp e r i en c emo r eho sp i t a landnu r s inghom es t ay scomp a r edtoo th e re ld e r lyadu l t s . Th roughou tmy12y e a rc a r e e ra saR eg i s t e r edNu r s e ,Ih av ew i tn e s s edm anyp a t i en t s w i thd em en t i aadm i t t edtoth eho sp i t a lw i thav agu ed i agno s i so f“ f a i lu r etoth r iv e ”o r “ c a r eg iv e rbu rnou t ” .Io f t enf e l th e lp l e s sw a t ch ingexh au s t edc a r eg iv e r scon t endw i thth e d em and so fth e i rr e spon s ib i l i t i e s ,a sw e l la sw a t ch ingp a t i en t sth em s e lv e ss t rugg l ew i th b e inginanun f am i l i a randov e r s t imu l a t inga cu t ec a r eenv i ronm en t .Th e s ep a t i en t s con s i s t en t lyexp e r i en c edp ro long edho sp i t a ladm i s s ion s ,ev en tu a l lyfo l low edbyat r an s f e rto ar e s id en t i a lc a r ef a c i l i tya sth e i rc a r eg iv e rb e c am ee i th e run ab l eo runw i l l ingtoh av eth e 9   p a t i en tr e tu rnhom e .Su chl eng thy“ so c i a ladm i s s ion s ”no ton lyh av en eg a t iv eimp l i c a t ion s fo rth ep a t i en t sandc a r eg iv e r s ,bu ta l sop l a c eas ign i f i c an te conom i cbu rd enonth eh e a l th c a r esy s t em(Ax am ,H a sn ip ,&Lux fo rd ,2013 ) . Th roughou tmynu r s ingc a r e e r ,Ih av ew i tn e s s edth e s e“ so c i a ladm i s s ion s ”inbo th ru r a landl a rg eu rb anc en t r e sinAu s t ra l i a ,Eng l and,andC an ad a .A l thoughin fo rm a l c a r eg iv e r sinru r a ls e t t ing sm ayf a c ech a l l eng e sw i thr eg a rd stomo r el im i t edav a i l ab i l i tyfo r r e sou r c e sandsuppo r t iv es e rv i c e s ,m anyo fth ech a l l eng e sa s so c i a t edw i thc a r eg iv inga r e s im i l a rtotho s eexp e r i en c edbyc a r eg iv e r sinu rb ans e t t ing s(B ed a rd ,Ko ivu r an t a ,&S tu ck ey , 2004 ) .Fo rex amp l e ,ru r a lc a r eg iv e r sinB ed a rde ta l . ’ s(2004 )s tudyr epo r t eds im i l a rh e a l th s t a tu s ,l ev e l so fbu rd en ,andunh e a l thyb eh av iou r scomp a r edtou rb anc a r eg iv e r s .L i l lye ta l . (2012 )a rgu edth a t ,a l thoughch a l l eng e sa s so c i a t edw i ths e rv i c ep rov i s ionini so l a t ed commun i t i e sdoex i s t ,h e a l thsy s t emr a t ion inginu rb ana r e a sh a sa l soa f f e c t edth e i r suppo r t iv es e rv i c e sandh a ss im i l a r lyl edtod e t r im en t a limp a c t sonc a r eg iv e r s(W i l e s ,2003 ) . Ov e r a l l ,a l thoughICPWDf romd i f f e r en tg eog r aph i c a la r e a sm ayb econ f ron t edw i th p a r t i cu l a rch a l l eng e sr e l a t edtos e rv i c ep rov i s ion ,m anyICPWDsh a r es im i l a rexp e r i en c e sin th ec a r eg iv ingcon t ex t . D em en t ia :Th eImp e tu so fth eJou rn ey Ac l e a rund e r s t and ingo fd em en t i aa sad i agno s i sp rov id e sin s igh tin toth ew ay sin wh i chsymp tomm an i f e s t a t ion sc ana f f e c tth ein fo rm a lc a r eg iv ingexp e r i en c eandc an con t r ibu t etoch ang ingc a r eg iv e rn e ed s .F i r s t ,i ti simpo r t an ttor e cogn i z eth a td em en t i ai sno t asp e c i f i cd i s e a s eini t s e l fbu ti sin s t e adag roupo fsymp tom sc au s edbyd i so rd e r sth a ta f f e c t th eb r a in(A l zh e im e rSo c i e tyo fC an ad a ,2015 ) .Sp e c i f i c a l ly ,d em en t i ap r e s en t sa s“ an a cqu i r edp e r s i s t en tandp rog r e s s iv eimp a i rm en tinin t e l l e c tu a lfun c t ion ,w i thcomp rom i s eo f 10   m emo ryanda tl e a s ton eo th e rcogn i t iv edom a in ”(H a rp e r ,John s ton ,&L and e f e ld ,2014 ,p . 56) .Th efou rdom a in so fd em en t i aa r eo f t enr e f e r r edtoa sth e“ fou rA ’ s ”(A l zh e im e r ’ s Found a t iono fAm e r i c a[AFA ] ,2016 ) .Th e s efou rk eyt e rm sa r ed e f in edb e low : •  Amn e s ia:sho r tt e rmo rlongt e rmm emo rylo s s ,a l thoughsho r tt e rmm emo ryi s p r im a r i lya f f e c t edf i r s t(AFA ,2016 ) ; •  Apha s ia :th ein ab i l i tytocommun i c a t ec ap ab ly ,e i th e rth roughth ein ab i l i tyto und e r s t andw r i t t eno rspok enl angu ag e ,o rth ein ab i l i tytofo rmspok enwo rd s(AFA , 2016 ) ; •  Ap ra x ia:th ein ab i l i tytoc a r ryou tinh e r en tmo to rsk i l l ssu cha sb ru sh ingon e ’ st e e th , du eton eu ro log i c a ldy s fun c t ioninth eb r a in(N a t ion a lIn s t i tu t eo fN eu ro log i c a l D i so rd e r sandS t rok e[N INDS ] ,2015 ) ; •  Agno s ia:a l t e r a t ion sins en so ryp e r c ep t ion ,c au s ingpoo rr e cogn i t iono fs ign a l s ,su ch a sp a ino rafu l lb l add e r(AFA ,2016 ) . Ind iv idu a l sw i thd em en t i am ayb ea f f e c t edbyanyo ra l lo fth e s efou rcond i t ion sdu r ing d i f f e r en ts t ag e so fth e i rd i s e a s e ;how ev e r ,th eya r emo s to f t enev id en tinth el a t e rs t ag e sand h av eb e enfoundtod ev e lopmo r er ap id lyintho s ed i agno s edw i thA l zh e im e r ’ sd i s e a s e(AD ) comp a r edtoo th e rfo rm so fd em en t i a(W e in e r ,2009 ) . A l thoughAD ,v a s cu l a rd em en t i a ,andd em en t i aw i thL ewybod i e stog e th e rcomp r i s e upto90%o fd em en t i ad i agno s e s(Sh e eh an ,2012 ) ,s ev e r a lo th e rd i so rd e r sc ana l soc au s e d em en t i a .L e s scommonc au s e so fd em en t i am ayh av er ev e r s ib l ee t io log i e s ;how ev e r , d em en t i ai smo s to f t eni r r ev e r s ib l e ,p rog r e s s iv e ,andc au s edbyd eg en e r a t iv eo r n eu rod eg en e r a t iv ep ro c e s s e s .D eg en e r a t iv ed em en t i ac anb er e l a t edtoin f e c t iou sp ro c e s s e s ( su cha sC r eu t z f e ld t J a cobd i s e a s e[C JD ] ,po s t en c eph a l i t i cd em en t i a ,andhum an 11   immunod e f i c i en cyv i ru s ) ,v a s cu l a rd i so rd e r s( su cha sin f a r c t s ,v a s cu l a rd em en t i a ,amy lo id ang iop a thy ,andB in sw ang e rd i s e a s e ) ,o rn eu rod eg en e r a t iv ed i so rd e r s( su cha sP a rk in son d i s e a s e ,Hun t ing tond i s e a s e ,P i ckd i s e a s e ,f ron to t empo r a ld em en t i a ,d em en t i aw i thL ewy bod i e s ,andAD )(Bo s s ,2010 ) .Fu r th e rd e s c r ip t ion so fth emo s tcommonfo rm so fd em en t i a l i s t edabov ec anb efoundinApp end ixA .Fo rth epu rpo s e so fth i sr ev i ew ,th et e rmd em en t i a w i l lb eu s edinr e f e r en c etoth emo s tcommonfo rm so fp rog r e s s iv ed em en t i a :AD ,v a s cu l a r d em en t i a ,m ix edd em en t i a ,f ron to t empo r a ld em en t i a ,andd em en t i aw i thL ewybod i e s( s e e Figu r e1 ) . F igu r e1.Commonsubtyp e so fd em en t i a .Ad ap t edf rom “Cogn i t iv eImp a i rm en tR e cogn i t ion ,D i agno s i sand M an ag em en tinP r im a ryC a r e ” ,byTh eGu id e l in e sand P ro to co l sAdv i so ryComm i t t e e ,2014,BCGu id e l in e s . ca,p a r a .3 .Copy r igh t2016by P rov in c eo fB r i t i shCo lumb i a . R eg a rd l e s so fth etyp eo fp rog r e s s iv ed em en t i ath a tap e r sonh a s ,c l in i c a l m an i f e s t at ion ssu cha sm emo rylo s s ,e r ron eou sex e cu t iv efun c t ion ing ,poo rcon c en t r a t ion , poo rjudgm en t ,moodch ang e s ,emo t ion a ll ab i l i ty ,agg r e s s iv eb eh av iou r s ,l angu ag ed e f i c i t s , o rd e c r e a s ingmob i l i ty ,m ayb e com eev id en tov e rt im e(Bo s s ,2010 ) .Add i t ion a l ly ,p rob l em s w i thsu c c e s s fu l lya c comp l i sh inga c t iv i t i e so fd a i lyl iv ing( ADL s) ,su cha sd r e s s ing ,b a th ing , andto i l e t ing ,o rin s t rum en t a la c t iv i t i e so fd a i lyl iv ing( IADL s ) ,su cha sg ro c e ryshopp ing , 12   b ank ing ,c l e an ing ,m ed i c a t ionm an ag em en t ,o rd r iv ing ,f r equ en t lyo c cu r(Bo s s ,2010 ) .I ti s v a lu ab l efo rc a r eg iv e r stound e r s t andth esymp tom sth a tth e i rlov edon em ayexp e r i en c e ,a s w e l la sth eb eh av iou r sth eym ayexh ib i t ,ino rd e rtob e s tan t i c ip a t eandp r ep a r efo rth eo f t end i s t r e s s ingsymp tomo logy .Th ep rog r e s s iv ena tu r eo fth ed i s e a s em e an sth a tth eh e a l thc a r e andfun c t ion a ln e ed so fth ea f f e c t edind iv idu a l st endtoe s c a l a t eth roughou tth ed i s e a s e p rog r e s s ion ,mo s to f t enr equ i r ingcon s t an tsup e rv i s ionanda s s i s t an c ew i tha l lADL sand IADL sbyth eendo fth ed i s e a s et r a j e c to ry . Ro s eandLop e z(2012 )a s c e r t a in edth a t ,a l thoughth er a t eo fp rog r e s s ionand symp tom so fth ed i s e a s edo e sv a ryb e tw e enp a t i en t s ,th e r ea r es ev e r a lch a r a c t e r i s t i c t r an s i t ion sth a to c cu ra sp a r to fth ed em en t i ap a thw ay .P rov id ingac l e a rund e r s t and ingo fth e s t ag e so fd em en t i atoICPWDm ayh e lpth emtob e t t e rund e r s t andth eexp e c t edp rog r e s s ion o fd em en t i aandtoan t i c ip a t eth et r an s i t ion sth a tth eym ayf a c e .D e sp i t ed i f f e r en tc l in i c a l m an i f e s t a t ion sb e tw e enth etyp e so fp rog r e s s iv ed em en t i a ,cogn i t iv eandfun c t ion a l d e t e r io r a t iona r eh a l lm a rks ign so fa l lo fth em .V a l id a t edd em en t i as t ag ings c a l e sh av e th e r e fo r eb e end ev e lop edtoh e lpgu id em an ag em en tandt r e a tm en tinp r im a ryc a r ep r a c t i c e , in c lud ingth eC l in i c a lD em en t i aR a t ing(CDR )(Mo r r i s ,1993 ) ,Fun c t ion a lA s s e s sm en t S t ag ing(FAST )(S c l an&R e i sb e rg ,1992 ) ,andth eG lob a lD e t e r io r a t ionS c a l e(GDS ) (R e i sb e rge ta l . ,1982 ) .Nol i t e r a tu r eh a sb e enfoundd e s c r ib ingwh e th e rth e s es c a l e sa r eu s ed mo r eo f t eninp r im a ryc a r es e t t ing scomp a r edtosp e c i a l i s ts e t t ing s .How ev e r ,th eu seo fth e GDSi ssugg e s t edinth eBCGu id e l in e sfo ru s einp r im a ryc a r es e t t ing stoh e lpw i th d i agno s i s(Gu id e l in e sandP ro to co l sAdv i so ryComm i t t e e ,2014 ) .Th es t ag e so fd em en t i a l i s t edinth e s es t ag ings c a l e sc anb eapp l i edtoa l lp rog r e s s iv ed em en t i a san dc anb eu s edto d e s c r ib eth ed i f f e r en ts t ag e stoICPWD .Th es c a l e sa r es im i l a r ,d e s c r ib ingth ed eg r e eo f 13   cogn i t iv eandfun c t ion a ld e c l in eine i th e rf iv es t ag e s(CDR )o rs ev ens t ag e s(GDSand FAST )ina c co rd an c ew i thth ed eg r e eo fcogn i t iv eandfun c t ion a ld e c l in e .Ino rd e rto i l lu s t r a t eth es t ag e so fd em en t i a ,th eth r e es c a l e sd e s c r ib edabov ea r ecomp a r edinApp end ix B . Som eau tho r s(Mon tgom e ry&Ko s lo sk i ,2000 ;W a ld ,F ahy ,W a lk e r ,&L iv ing s ton , 2003 )sugg e s tth a th igh l igh t ingth es t ag e so fc a r eg iv ingr a th e rth anth es t ag e so fd em en t i a w i l lb e t t e rp r ep a r ePCP stocon c en t r a t eonth en e ed so fICPWD .Ro s eandLop e z(2012 ) d i s ag r e e ,a rgu ingth a tth econ s id e r a t iono fth es t ag e so fd em en t i aa l low sPCP stop rov id e an t i c ip a to rygu id an c e ,a sw e l la so th e rsuppo r t iv ein t e rv en t ion s ,toth eICPWDa t app rop r i a t ejun c tu r e so fth ed i s e a s ep ro c e s s(Ro s e&Lop e z ,2012 ) .Am a lg am a t ingbo thth e s t ag e so fc a r eg iv ing ,su cha sth eE l i z zF iv eL i f eS t ag e so fC a r eg iv ing(E l i z z ,2015 ) ,w i thth e s t ag e so fd em en t i am ayp rov ev a lu ab l efo rbo thICPWDandPCP s .Th ef iv es t ag e so f c a r eg iv ingp rog r e s sth roughth eh e lp ings t ag e ,invo lv eds t ag e ,in t en s iv es t ag e ,a l l en comp a s s ings t ag e ,andc lo s ings t ag e .D ev e lop ingacon so l id a t edund e r s t and ingo fth e d i s e a s ep ro c e s sandan t i c ip a t edt r a j e c to ryw i l lh e lpPCP stochoo s eth eapp rop r i a t e suppo r t iv ein t e rv en t ion s ,andc anh e lpbo thICPWDandc a r er e c ip i en t ssu c c e s s fu l ly t r an s i t ionth roughth ed i f f e r en ts t ag e so fth ed em en t i ajou rn ey . G e t t ingtoKnowth eT rav e l e r s : Whoa r eTh eCa r eg iv e r sand Wha ti sth eRo l eo fEa ch Typ e? P a t i en t sw i thd em en t i aw i l lin ev i t ab lyr equ i r ec a r ep rov i s ionf rome i th e rin fo rm a lo r fo rm a lc a r eg iv e r s ,o rbo th .Th et e rm“ fo rm a lc a r eg iv e r s ”r e f e r stop a idh e a l thc a r e p ro f e s s ion a l s ,su cha sc a r ea id e s ,nu r s e s ,andPCP s ,whofu l f i l lth ev i t a lro l eo fp rov id ing c a r etoc l i en t sinr e s id en t i a lc a r ef a c i l i t i e s ,a cu t ec a r ef a c i l i t i e s ,ho sp i c e s ,o rw i th inth e   14 c l i en t ’ shom e(G a l l agh e r Thomp sone ta l . ,2009 ) .Th e s efo rm a lc a r eg iv e r sm ayb eh i r edand p a idbyap r iv a t ecomp any ,byapub l i cb odysu cha sap rov in c i a lH e a l thAu tho r i ty ,o rbyth e c l i en td i r e c t ly .Incomp a r i son ,in fo rm a lc a r eg iv e r sa r emo s to f t enf am i lym emb e r s ,u su a l ly th espou s eo ranadu l tch i ldo fth eind iv idu a la f f e c t ed ,a l thoughsu chc a r eg iv e r sm aya l sob e th ec a r er e c ip i en t ’ sf r i end so rn e ighbou r s .In fo rm a lc a r eg iv e r sa r eg en e r a l lyunp a id ; how ev e r ,th eym ayr e c e iv eagov e rnm en tsub s idy ,t axb en e f i to ro th e rcomp en s a t ionin ex ch ang efo rp rov id ingc a r e .Inth ee a r lys t ag e so fth ed i s e a s einp a r t i cu l a r ,th em a jo r i tyo f c a r ep ro v id edtop eop l ew i thd em en t i at end stob ed e l iv e r edbyin fo rm a lc a r eg iv e r s(D a ly , M cC a r ron ,H igg in s ,& M cC a l l ion ,2012 ;Ro s e&Lop e z ,2012 )whoo f t enh av el i t t l eo rno p r io rexp e r i en c eind em en t i ac a r eg iv ing(S avv a&B r ayn e ,2009 ) .Bo thfo rm a landin fo rm a l c a r eg iv e r sc anp l aye s s en t i a lro l e sina s s i s t ingtho s einn e edo fc a r eandbo thtyp e so f c a r eg iv e r sw i l lo f t encon cu r r en t lyp rov id ec a r etoind iv idu a l sw i thd em en t i a ,e sp e c i a l lyin th el a t e rs t ag e so fth ed i s e a s ep ro c e s s .F igu r e2i l lu s t r a t e sth ecommonp rog r e s s ionf rom in fo rm a ltofo rm a lc a r ew i th inth econ t ex to fd em en t i a . F igu r e2 .Th ep rog r e s s iono fca r edu r ingth ep rog r e s s iono fd em en t ia .Adap t edf rom “Th eFou rS t ep so fLongT e rmC a r eP l ann ing ” ,byTh eN a t ion a lC a r eP l ann ingCoun c i l , 2013 ,Th eA c c iden ta lCa r eg i v e r ,p a r a .13 .Copy r igh t2016byTh eN a t ion a lC a r eP l ann ing Coun c i l . 15   Bo thtyp e so fc a r eg iv e r sm ayho ldv a r i edr e spon s ib i l i t i e s ,in c lud ingc l e an ing ,m e a l p r ep a r a t ion ,runn inge r r and s ,d r iv ing ,m ed i c a t ionsup e rv i s ion ,p e r son a lc a r e ,andemo t ion a l suppo r t(F a s t ,N i eh au s ,E a l e s ,&K e a t ing ,2002 ) .How ev e r ,inadd i t iontoth eexp e c t a t iono f su chrou t in etyp e so ft a sk s ,c a r eg iv e r so ftho s ew i thd em en t i amu s to f t encon t endw i thth e c a r er e c ip i en t ’ sd i s e a s e indu c edr e a c t ion stoc a r e ,su cha sc a r er e s i s t a n c e ,ad im in i sh ed ab i l i tytocommun i c a t e ,andfu r th e rcon c e rn ssu cha sw and e r ing ,p e r s ev e r a t ion ,ag i t a t ion , p a r ano i a ,s ign i f i c an tp e r son a l i tych ang e s ,andin somn i a(Au s t rome ta l . ,2004 ;F am i ly C a r eg iv e rA l l i an c e ,2015 ) .In fo rm a lc a r eg iv e r sm ayf indm an ag ingth e s eb eh av iou r smo r e d i f f i cu l tth anfo rm a lc a r eg iv e r s ,a sth eyo f t enl a ckth eknow l edg e ,sk i l l s ,andexp e r i en c ein d em en t i ac a r eth a tfo rm a lc a r eg iv e r spo s s e s s(S ad avoy& W e s s en ,2012 ) .Th i scon t en t ioni s suppo r t edbyC z a j ae ta l .(2013 )whofoundth a tm anyin fo rm a lc a r eg iv e r sr epo r tf e e l ing in su f f i c i en tcomp e t en c etoe f f e c t iv e lyfu l f i l lth ec a r eg iv ingro l e .In fo rm a lc a r eg iv e r s( i fa spou s eo radu l tch i ld )mu s to f t enl e a rntoad ap tandp rov id ec a r ew i th inacomp l i c a t ed emo t ion a lenv i ronm en t ,r e su l t ingi nsu chf e e l ing sa sapp r eh en s ion ,lon e l in e s s ,andg r i e f .In con t r a s t ,fo rm a lc a r eg iv e r sm ayno texp e r i en c esu chemo t ion a lcon f l i c tb e c au s eo fth el a ck o fap r e ex i s t ingr e l a t ion sh ipw i thth eind iv idu a lr equ i r ingc a r e(S ad avoy& W e s s en ,2012 ) . Fu r th e r ,m anyICPWDf a c eth er e spon s ib i l i tyo fh av ingtop rov id ec a r e24hou r sp e rd ay , s ev end ay sp e rw e ek ,w i thl im i t eda c c e s stor e sp i t ec a r e ,andcon f in em en tw i th inth ehom e wh enth ec a r er e c ip i en ti sun ab l etob el e f ta lon e . L ev in e(2006 )add sth a tth eb igg e s tch al l eng esh ef a c eda sanin fo rm a lc a r eg iv e rw a s no twh a tsh eh adtodobu tr a th e rl a ck ingad equ a t et im einwh i chtodoi t .Fo rex amp l e ,sh e o f t enfoundh e r s e l fc l e an ingo rp ay ingb i l l sl a t ea tn igh ts in c esh eh adnot im edu r ingth ed ay top e r fo rmth e s et a sk s .Sh efoundi tf ru s t r a t ingth a ta s s e s sm en t sfo rfo rm a lc a r es e rv i c e s 16   in c lud edqu e s t ion sabou tth ep e r son a la c t iv i t i e sw i thwh i chh e rhu sb andn e ed edh e lp ,bu t th eyf a i l edtoa skabou tm anyo fth ea s so c i a t edi s su e s ,su cha sth ed i f f i cu l tya s so c i a t edw i th su c ht a sk s ,h e rownr e su l t ings l e epd ep r iv a t ion ,andhowsh ew a sab l etocomp l e t ea l lo fh e r r e spon s ib i l i t i e sdu r ingth ed ay .L ev in e(2006 )r e c a l l sth a tmu cho fh e rt im ea sac a r eg iv e r w a ssp en tw a i t ing ,“ ju s tb e ingth e r e ,w a i t ingfo rth en ex tt im etodosom eth ing ,th en ex tt im e th e r ei sac a l lfo rw a t e r ,ch ang ingth eTVch ann e l ,f ix ingth ep i l low ,o ranyo fcoun t l e s s un c a t ego r i z ab l er equ e s t s ”(p .9 ) . I ti so f t enth ep e r s i s t en td em and so fc a r e ,su cha stho s einth eabov eex amp l e s ,a s w e l la sh av ingtop rov id eongo ingc a r eev e rym inu t eo fev e ryd ay ,th a tp r ed i spo s ec a r eg iv e r s tod i s t r e s s ,poo rad ap t a t ion ,o rp l a c em en to fc a r er e c ip i en t sinr e s id en t i a lc a r e(G aug l e r , K an e ,K an e ,C l ay ,&N ew com e r ,2003 ;P inqu a r t&So r en s en ,2003 ) .Exp e r i en c e ssu cha s L ev in e ’ s(2006 )h igh l igh tsom eo fth ed i f f i cu l t i e sth a tin fo rm a lc a r eg iv e r sf a c e .Thu s ,th e impo r t an c eo fin fo rm a lc a r eg iv e rn e ed sa s s e s sm en t sb e com e sin c r e a s ing lyev id en ti faPCP i stochoo s eandimp l em en tth emo s tapp rop r i a t ein t e rv en t ion sfo rag iv enc a r eg iv e r . Inadd i t iontog a in inganund e r s t and ingo fth et a sk sinvo lv edw i thin fo rm a l c a r eg iv ing ,i ti su s e fu lfo rPCP stoh av eanund e r s t and ingo fin fo rm a lc a r eg iv e r d emog r aph i c sino rd e rtomo s tapp rop r i a t e lyt a i lo rin t e rv en t ion stoind iv idu a l sandto p ro a c t iv e lyid en t i fyanyh ighr i skg roup s .S ad avoyand W e s son(2012 )h av eid en t i f i edth a t , inC an ad a ,97%o fp e r son sw i thd em en t i ah av ea tl e a s ton ein fo rm a lc a r eg iv e r ,w i th50%o f tho s ec a r eg iv e r sb e ingov e rth eag eo f65 .Th em a jo r i tyo fth e s ein fo rm a lc a r eg iv e r sa r e wom en(S ad avoy& W e s son ,2012 ;S inh a ,2012 ) .Th eA l zh e im e r ’ sA s so c i a t ion(2016 ) r epo r t sth a t75%o fICPWDh av eb e enp rov id ingc a r efo ra tl e a s ton ey e a rwh i l e33%h av e b e enp rov id ingc a r efo rf iv eo rmo r ey e a r s . 17   A l thoughf em a l ein fo rm a lc a r eg iv e r sou tnumb e rm a l e s(59%wom encomp a r edto 41%m en ) ,th e r ea r eas ign i f i c an tnumb e ro fm a l ec a r eg iv e r sinC an ad a(E a l e s ,K im ,&F a s t , 2015 ) .Th i sm ay ,inp a r t ,b er e l a t edtoth ef a c tth a tmo r ewom en(72% )a r ed i agno s edw i th d em en t i ath anm enannu a l ly ,andth e s ewom ena r eo f t enth enc a r edfo rbyth e i rhu sb and s (A l zh e im e rSo c i e tyo fC a lg a ry ,2013 ) .Th eg r e a t e rnumb e ro ff em a l ec a r eg iv e r sov e r a l li s l ik e lydu etoth enumb e ro fwom enp rov id ingc a r etoe ld e r lyp a r en t so ro th e rr e l a t iv e sin add i t iontoth e i rspou s e s .Comp a r edtoth e i rm a l ecoun t e rp a r t s ,i th a sa l sob e enfoundth a t w iv e sandd augh t e r ssp endmo r et im eonc a r eg iv ingr e spon s ib i l i t i e sp e rw e ek(F am i ly C a r eg iv ingA l l i an c e ,2011 ;S inh a ,2012 ) .S inh a(2012 )p ropo s e sth a tth eg r e a t e rnumb e ro f c a r eg iv inghou r sth a twom enp rov id em ayp a r t lyb er e l a t edtoth etyp eo ft a sk srou t in e ly p e r fo rm ed . Wom ena r emo r el ik e lytoh e lpw i thth ep rov i s iono fp e r son a lc a r e ,d r e s s ing , to i l e t ing ,m ed i c a lt r e a tm en t s ,andhou s ewo rk ,wh e r e a sm ena r emo r el ik e lytoa s s i s tw i th ou tdoo rwo rko rm a in t en an c e(S inh a ,2012 ) . At r endtow a rd sd e l ay edch i ldb e a r ing ,a sw e l la sth ein c r e a s ednumb e ro fwom enin th ewo rk fo r c e ,sugg e s t sth a tanin c r e a s ingnumb e ro fwom ena r ea l soinvo lv edinth e “ s andw i chg en e r a t ion ”whop rov id ec a r efo rch i ld r enande ld e r lyr e l a t iv e swh i l e s imu l t an eou s lywo rk ingou t s id eth ehom e(A l zh e im e r ’ sA s so c i a t ion ,2015b ;D ang ,B ad iy e , &K e lk a r ,2008 ) . MyAun ti sanex amp l eo fap e r soninth i ss i tu a t ion ,a ssh ew a ssub j e c t ed tonum e rou sco mp e t ingandcon cu r r en temp loym en t ,f am i ly ,andc a r eg iv ingd em and s .Sh e f r equ en t lyh adtor equ e s tt im eo f fo fwo rktoa t t endtoth en e ed so fmyg r andp a r en t s . Add i t ion a l ly ,sh ewou ldh av etof lyb a cktoOn t a r iofo ro th e rf am i lycomm i tm en t sfo rh e r son so rhu sb and ’ sf am i ly .Aw(2013 )r epo r t sth a tth r e el a rg es c a l ewo rk l i f esu rv ey sw e r e condu c t edbyDuxbu ryandH igg in s(2012 )ov e rth ep a s t20y e a r s .Th er e s e a r ch e r sfound 18   th a tth enumb e ro fC an ad i an sinth ewo rk fo r c ep rov id ingc a r etoe ld e r lyr e l a t iv e s s ign i f i c an t lyin c r e a s edf rom5%in1991to73%in2012 .On einth r e er e spond en t stoth e s e su rv ey sb e long edtoth es andw i chg en e r a t ion ,o fwh i ch21%r epo r t edf e e l ingov e rwh e lm ed a tl e a s tw e ek ly .On c eag a in ,th i sw a si l lu s t r a t edinmyAun t ’ sexp e r i en c e sw i thc a r eg iv ing , a ssh eo f t enf e l tov e rwh e lm edw i thth es i tu a t ion sth a tsh ef a c eda sp a r to fth ec a r eg iv e r exp e r i en c e . Th eRoadL e s sT rav e l ed :Th eImpa c to fCa r eg iv ingonIn fo rma lCa r eg iv e r s Fo rICPWD,th ed em en t i ajou rn eyc anb ecomp a r edtot r av e l ingdownas t e ep , w ind ing ,bumpyro adw i thnof i rmid e ao fth ed i r e c t ioninwh i chon ei sa c tu a l lyh e ad ed . In fo rm a lc a r eg iv ingfo rind iv idu a l sw i thd em en t i ac anb ech a r a c t e r i z edbyun iqu ech a l l eng e s andp ro l i f i cs t r e s sth a to f t enin c r e a s eov e rt im edu etoth ep rog r e s s iv en a tu r eo fth ed i s e a s e (Co t r e l l ,1997 ;C z a j ae ta l . ,2013 ;D av i s ,H end r ix ,&Sup e rv i l l e ,2011 ) .As ign i f i c an tamoun t o fr e s e a r chh a sd emon s t r a t edth a tin fo rm a lc a r eg iv e r sm aysu f f e radv e r s ephy s i c a land m en t a lh e a l thou t com e s(B e l l ee ta l . ,2006 ;B lome ta l . ,2015 ;C roog ,Bu r l e son ,Sud i lov sky , &B aum e ,2006 ;D i amond ,G l eu ck au f ,&Loom i s ,2003 ;F e r r e i r a ,Agu i a r ,& M en e s e s ,2014 ; S imon ,2001 ;T r emon t ,2011 ) ,a sw e l la sn eg a t iv eso c i a landf in an c i a lcon s equ en c e s ,a sa r e su l to fc a r ingfo rp a t i en t sw i thd em en t i a(L a i ,2012 ) .As tudybyS chu l zandB e a ch(1999 ) r epo r t edth a tmo r t a l i tyr e l a t edtop sy cho log i c a ls t r a inw a sfoundtob e63%h igh e rin in fo rm a lc a r eg iv e r sth aninnon c a r eg iv e r s .Fu r th e r ,as tudybyS cho enm ak e r se ta l .(2010 ) foundth a tICPWDinth ecommun i tye xp e r i en c emo r ebu rd en ,bo thp sy cho so c i a land phy s i c a l ,th anin fo rm a lc a r eg iv e r so find iv idu a l sw i tho th e rch ron i cd i s e a s e s . S t r e s so r s .I ti sw e l lknownth a tch ron i cs t r e s sc anl e adtophy s i c a landemo t ion a l con s equ en c e s ,s ign i f i c an t lyimp a c t ingth eh e a l thandw e l l b e ingo fanind iv idu a l .Kh a l s a 19   (2010 )r epo r t sth a t ,“ c a r eg iv e r sa r etw i c ea sl ik e lytor epo r tphy s i c a ls t r a inandh ighl ev e l so f emo t ion a ls t r e s sa sad i r e c tr e su l to fc a r eg iv ingr e spon s ib i l i t i e s ”comp a r edtonon c a r eg iv e r s (p .1025 ) .S chub e r te ta l .(2008 )r epo r t edonan a t ion a lsu rv eycondu c t edinth eUn i t edS t a t e s th a tin c lud edov e r1 ,500in fo rm a lc a r eg iv e r s .Th e s eau tho r sd e t e rm in edth a t ,incomp a r i son toin fo rm a lc a r eg iv e r so ftho s ew i thphy s i c a ld i s ab i l i tybu tno td em en t i a ,mo r ein fo rm a l c a r eg iv e r sd e s c r ib edth e i rro l ea s“ ex c e ed ing lys t r e s s fu l ” . A sth ed i s e a s et r a j e c to ryo fd em en t i ac anb el eng thy ,ICPWDo f t enb e com eh igh ly vu ln e r ab l etov a r iou ss t r e s s fu lo c cu r r en c e s(Coh en&L e e ,2007 ) .P r im a ryands e cond a ry s t r e s so r sm ayl e adtofu r th e rc a r eg iv e rd i s t r e s s ,a f f e c t ingbo thh e a l thandw e l l b e ingand imp ed ingth ein fo rm a lc a r eg iv e r ’ sab i l i tytoe f f e c t iv e lyp rov id ec a r etoano th e rp e r son . P r im a ry(ob j e c t iv e )s t r e s so r sth a ta r ep a r t i cu l a r lyr el ev an ttoad em en t i ad i agno s i swou ld in c lud ephy s i c a lc a r eg iv ingd em and sth a tb e com emo r ech a l l eng inga sth ed i s e a s e p rog r e s s e s .R e l ev an ts e cond a ry( sub j e c t iv e )s t r e s so r swou ldin c lud ef in an c i a lbu rd en th roughlo s so fw ag e s ,f am i lycon f l i c t s ,r e l a t ion sh iph a rd sh ip s ,andin c r e a s ingso c i a l i so l a t iona sth en e ed so fth ec a r er e c ip i en tin c r e a s e(Em l e t ,1996 ;F a r cn ik&P e r syko ,2002 ; S avv a&B r ayn e ,2009 ) .Fu r th e r ,a sd em en t i ai san eu rod eg en e r a t iv econd i t ionw i thnocu r e , un c e r t a in tyabou twh a tth efu tu r eho ld sa f t e rd i agno s i sc anb eex c e ed ing lys t r e s s fu l .I fth e in fo rm a lc a r eg iv e rb e com e sun ab l etocop ew i thth ech ron i cs t r a inands t r e s sa s so c i a t edw i th c a r eg iv ing ,h eo rsh em ayb e com ed i s t r e s s edandun ab l etocon t inu etop rov id ec a r efo rth e p e r sonw i thd em en t i a . Phy s i ca limpa c t s .A l thoughm anyin fo rm a lc a r eg iv e r sm ayr a t eth e i rh e a l tha sgood o rev enex c e l l en t ,th es t r e s sinvo lv edw i thd em en t i ac a r eg iv ingh a sb e ena s so c i a t edw i th num e rou sn eg a t iv eimp l i c a t ion sr eg a rd ingphy s i c a lh e a l th ,in c lud ingf a t igu e ,w e ig h t 20   ch ang e s ,andin somn i a(G a l l an t&Conn e l l ,2003 ;K r a ch&B rook s ,1995 ;S an son ie ta l . , 2004 ) .Add i t ion a l ly ,i th a sb e enhypo th e s i z edth a tc a rd iov a s cu l a rp rob l em s ,su cha s hyp e r t en s ionandco ron a rya r t e ryd i s e a s e ,a r ea s so c i a t edw i thc a r eg iv ing(V i t a l i anoe ta l . , 2002 ) .Phy s io log i c a l ly ,ch ron i cs t r e s s“…imp a i r sh ippo c amp a l d ep end en tcogn i t iv e fun c t ion ,supp r e s s e sn eu rog en e s i s ,andc au s e sd end r i t i csh r ink ag e ,wh i chs e rv e sa sa m e ch an i sminth ep a thog en e s i so fhum and ep r e s s iv ei l ln e s sandcogn i t iv ed e c l in e ”(Kh a l s a 2010 ,p .1025 ) .Th i sc anm an i f e s ta spoo rd e c i s ion m ak ingandc a r ep rov i s ionbyth e in fo rm a lc a r eg iv e r(Kh a l s a ,2010 ) .Am e t aan a ly s i scondu c t edbyV i t a l i ano ,Zh ang ,and S c an l an(2003 )foundth a tc a r eg iv e r sc anh av ed e c r e a s edan t ibodyr e spon s e sincomp a r i son tonon c a r eg iv e r s ,a sw e l la sg r e a t e rl ev e l so fc i r cu l a t ings t r e s sho rmon e s .In c r e a s edl ev e l s o fs t r e s sho rmon e ssu cha sco r t i so l ,ad r eno co r t i co t rop in(ACTH ) ,8 l ipo t rop inand3 endo rph in ,a sw e l la sc a t e cho l am in e sr e l e a s eddu r ingp ro long eds t r e s s ,c anl e adtod am ag ing sy s t em i ca f f e c t s(R an ab i r&R e e tu ,2011 ) .Ch ron i cs t r e s sc ana l soc au s ea l t e r edendo c r in e r e spon s e s ,su cha sin c r e a s edd i s s em in a t iono fv a sop r e s s in ,gon ado t rop insupp r e s s ion , supp r e s s edthy ro idfun c t ion ,ad e f i c i en cyo fg row thho r mon es e c r e t ion ,ch ang e sinp ro l a c t in l ev e l s ,andd e c r e a s edin su l ins e c r e t ion(R an ab i r&R e e tu ,2011 ) . Ch ron i cs t r e s sc anl e adtoth ed ev e lopm en t ,o rex a c e rb a t ion ,o fnum e rou sd i s e a s e s t a t e sandc anadv e r s e lya f f e c timmun eandin f l amm a to ryr e spon s e s(Fo r sh e e ,C l ay ton ,& M cC an c e ,2010 ) .Inth e i rs tudyinv e s t ig a t ingth er e l a t ion sh ipb e tw e enc a r eg iv e rs t r e s s , immun esy s t emsupp r e s s ion ,andsymp a th e t i cn e rvou ssy s t ema c t iv a t ion ,M i l l se ta l .(2004 ) con c lud edth a timmun i tyw a ssupp r e s s edina t r i skc a r eg iv e r s ,a sd emon s t r a t edbyth e i r d e c r e a s edb e t a 2ad r en e rg i cr e c ep to rs en s i t iv i tyandd en s i ty .E ld e r lyin fo rm a lc a r eg iv e r s m ayb ea tev enh igh e rr i skfo rpoo rad ap t a t iontos t r e s sdu eton eu roho rmon a l ,c e l lu l a r ,and 21   immun ech ang e swh i cha r eco l l e c t iv e lyr e f e r r edtoa s“ s t r e s s ag esynd rom e ”(Fo r sh e ee ta l . , 2010 ,p .365 ) . A sd em en t i ap rog r e s s e s ,th el ev e lo fr equ i r eda s s i s t an c ew i thADL sandIADL sby th eind iv idu a lw i thd em en t i ao f t enin c r e a s e s ,r e su l t inginth ein fo rm a lc a r eg iv e rt ak ingon ev e r g r e a t e rr e spon s ib i l i t i e s(Nguy en ,2009 ) .Th e s ephy s i c a ld em and sa longw i thth e in c r e a s edmo rb id i tya s so c i a t edw i thag ingp l a c e se ld e r lyc a r eg iv e r sa tp a r t i cu l a rr i skfo r poo rphy s io log i c a lou t com e s(Aue ta l . ,2010 ;P inqu a r t&Sö r en s en ,2006 ;S chu l z& P a t t e r son ,2004 ;V i t a l ianoe ta l . ,2003 ) .Inadd i t iontoth er i skfo rin ju ryth a ti sr e l a t edtoth e phy s i c a l lych a l l eng ingt a sk sinvo lv edinc a r eg iv ing ,ICPWDm aya l sob ea tr i sko fin ju ry f romagg r e s s iv eandimpu l s iv eb eh av iou r sin f l i c t eduponth embyth ec a r er e c ip i en t .Th e r e l a t ion sh ipb e tw e enlong t e rmc a r eg iv ing ,ch ron i cs t r e s sandd e t r im en t a lphy s i c a le f f e c t s h av eimpo r t an tc l in i c a ls ign i f i c an c ea si tc anp rov id eon em e a su r ebywh i chtoid en t i fya t r i skICPWDa sw e l la stogu id eth echo i c eo fapp rop r i a t ein t e rv en t ion s(S chu l z&P a t t e r son , 2004 ) . P sy cho log i ca limpa c t s .Inadd i t iontoth ephy s i c a le f f e c t so fch ron i cs t r e s sr e l a t edto th ed i f f e r en ta sp e c t so fc a r eg iv ing ,m en t a landemo t ion a le f f e c t sc ana l sog r e a t lyimp a c t ICPWD ,l e ad ingtod i s t r e s sandpoo rad ap t a t iontoth ec a r eg iv e rro l e .N eg a t iv e p sy cho log i c a le f f e c t sr e l a t edtop e r son a ls a c r i f i c e ,h av ingtop e r fo rmth em anyt a sk s invo lv edw i thc a r eg iv ing ,in c r e a s ingr i sko fso c i a li so l a t ion ,andf e e l ing so fbu rd en ,bu rnou t , gu i l t ,f ru s t r a t ion ,andf e a r( r e l a t edtoe i th e rp e r son a ls a f e tyo rth es a f e tyo fth ec a r e r e c ip i en t ) ,m aym an i f e s tinth ec a r eg iv e ra sd ep r e s s ion ,anx i e ty ,ang e r ,andbu rd en (M cK ibb in ,W a l sh ,R ink i ,Ko in ,&G a l l agh e r Thomp son ,1999 ;S chu l z&P a t t e r son ,2004 ) . Th e r ei sfo rm id ab l econ cu r r en c eth roughou td emen t i ac a r eg iv ingl i t e r a tu r e ,ind i c a t ingth a t 22   p rov id ingc a r efo rap e r sonw i thd em en t i ac anl e adtoth e s etyp e so fn eg a t iv eimp a c t sonth e in fo rm a lc a r eg iv e r(S chu l z&P a t t e r son ,2004 ) .In c r e a s edl ev e l so fs t r e s sandanx i e tym ayb e exp r e s s edbyICPWDwh ent h e r ea r er epo r t so fs l e epd ep r iv a t ion ,f r equ en ts l e ep in t e r rup t ion sa tn igh t ,o rv e rb a lo rphy s i c a labu s e(Du ry ,2014 ) . Th es t r e s sinvo lv edw i thc a r eg iv inga l sop l a c e sICPWDa tin c r e a s edr i skfo rm en t a l h e a l thi s su e s ,p a r t i cu l a r lyd ep r e s s ion(Cu i jp e r s ,20 05 ;Ep s t e in Lubow ,D av i s ,M i l l e r ,& T r emon t ,2008 ;Ow ene ta l . ,2002 ;S cho enm ak e r se ta l . ,2010 ;S chub e r te ta l . ,2008 ) . Num e rou ss tud i e sh av efoundth a td ep r e s s iont end stob econn e c t edtos ev e r a lf a c to r s invo lv edinc a r eg iv ing ,in c lud ingd eg r e eo fp e r c e i v edbu rd en ,l ev e lo fh e a l th ,in com eo fth e c a r eg iv e r ,andd eg r e eo fl i f es a t i s f a c t ion(Cu i jp e r s ,2005 ;S chub e r te ta l . ,2008 ;Ow ene ta l . , 2002 ) .Th ein c id en c eandp r ev a l en c eo fd ep r e s s ioni sg r e a t e rinICPWDcomp a r edtonon c a r eg iv e r s(Cu i jp e r s ,2005 ;Ngu y en ,2009 ;S chub e r te ta l . ,2008 ) .S im i l a r ly ,S cho enm ak e r s e ta l .(2010 )foundth a tICPWDh av emo r ed i agno s e so fd ep r e s s ionth ano th e r so fth e i rag e , w i thc a r eg iv e rr a t e sr ang ingf rom30%to80% . Aw(2013 )s t a t e sth a tin fo rm a lc a r eg iv e r sinth es andw i chg en e r a t iona r ea l soa t p a r t i cu l a rr i skfo r“ comp a s s ionf a t igu e ” .Comp a s s ionf a t igu er ep r e s en t sasynd rom eth a tw a s o r ig in a l lyu s edtod e s c r ib eth ephy s i c a landemo t ion a lexh au s t ionexp e r i en c edbym e d i c a l p ro f e s s ion a l swhop rov id eag r e a td e a lo femp a thyandc a r eg iv inginth ewo rkp l a c e . R e s e a r chh a snowd emon s t r a t edev id en c eo fcomp a s s ionf a t igu einICPWD(D ay ,And e r son , &D av i s ,2014 ) .Th esynd rom ei sch a r a c t e r i z edbyphy s i c a l ,emo t ion a l ,andsp i r i tua l co l l ap s er e l a t edtocon s t an tc a r eg iv ingandc anl e adtof e e l ing so fanx i e ty ,ap a thy , d ep r e s s ion ,r e s en tm en t ,andh e lp l e s sn e s s(Aw ,2013 ;D aye ta l . ,2014 ) . 23   So c ia limpa c t s .Inadd i t iontoth ephy s i c a l ,m en t a l ,andemo t ion a limp a c tth a t c a r eg iv ingc anh a v eonICPWD ,su chc a r eg iv e r sa l sor epo r tf r equ en tf e e l ing so fi so l a t ion andp r e s su r e .Th e s en eg a t iv ef e e l ing sc anr e su l tinf in an c i a landso c i a limp l i c a t ion sa sw e l l (S cho enm ak e r se ta l . ,2010 ) .Co t r e l landEng e l(1999 )con cu r ,s t a t ingth a t ,a sc a r eg iv ing d em and sa c cumu l a t e ,th ein fo rm a lc a r eg iv e rc ans imu l t an eou s lyb e com ein c r e a s ing ly so c i a l lyi so l a t edf romou t s id er e so u r c e sandsuppo r t s .Fu r th e rmo r e ,lon e l in e s sinsu ch s i tu a t ion si scommonandh a sap rov ena s so c i a t ionw i thin c r e a s edmo rb id i tyandmo r t a l i t y (Ch a r l e swo r the ta l . ,2008 ) .M anyadu l tch i ld r enp rov id ingc a r etoane ld e r lyp a r en tf indth a t th eymu s td e c r e a s eth enumb e ro fwo rk inghou r sth a tth eyc anp e r fo rmp e rw e ekino rd e rto con t inu etop rov id ec a r e .Th er e su l t inglo s so fin com em aya f f e c tth e i rf am i lyandb e com ea s ign i f i c an tadd i t ion a lsou r c eo fs t r a in . F inan c ia limpa c t s .Th ee conom i cimp l i c a t ion sr e l a t edtoc a r eg iv ingc anb e d e t r im en t a ltom anyICPWD .Th eco s t sa s so c i a t edw i tha cqu i r ingsuppo r t iv es e rv i c e s ,o r p l a c ingaf am i lym emb e rinar e s id en t i a lc a r ef a c i l i ty ,c anb eexo rb i t an tandp roh ib i t iv e .Th e f in an c i a lco s t so fc a r ingm aya l soin c lud ed i r e c tnon r e imbu r s ab l eh e a l thc a r eco s t sfo rth e c a r er e c ip i en t ,a sw e l la sth eco s to ffo rgon ew ag e s(L a i ,2012 ) .Th ef in an c i a limp a c ton young e rICPWDwhor em a ininth ewo rk fo r c ec anb econ s id e r ab l ea sm anyin fo rm a l c a r eg iv e r sf indth a tth eymu s tn e c e s s a r i lyd e c r e a s eth eamoun to fhou r sth a tth eya r eab l eto wo rke a chw e ek .F a r cn ikandP e r syko(2002 )s t a t eth a tasub s t an t i a lnumb e ro fin fo rm a l c a r e g iv e r sa r ea c tu a l lyfo r c edtoqu i two rk ingen t i r e lyino rd e rtot ak eonth ec a r eg iv ingro l e . Th ef in an c i a limp a c to fc a r eg iv ingc ana l sob ep a r t i cu l a r lys ign i f i c an tfo re ld e r lyspou s e s whoa r enolong e rinth ewo rk fo r c eo rwhoa r er e c e iv ingl im i t edp en s ions . 24   Bu rd en .Em l e t(1996 )d e s c r ib e sbu rd ena sacomp l exph enom enoninvo lv ing num e rou sob j e c t iv eandsub j e c t iv ef a c to r s .S im i l a r ly ,T ebb(1995 )s t a t e sth a tbu rd en ,“o rth e in ab i l i tytob er e s i l i en t ,i sth eex t en ttowh i chth ec a r eg iv e rp e r c e iv e sth a th i so rh e rphy s i c a l , so c i a l ,m en t a l ,andsp i r i tu a ls t a tu si ssu f f e r inga sar e su l to fp rov id ingc a r e ”(p .88 ) . D e t e rm in ingac a r eg iv e r ’ sl ev e lo fp e r c e iv edbu rd eni se s s en t i a l ,no ton lyfo rth epu rpo s eo f en su r ingth eh e a l thandw e l l b e ingo fICPWD ,bu ta l sotoi d en t i fyanyn eg a t iv eimp a c ton th ec a r er e c ip i en t .Ino rd in a t ec a r eg iv e rbu rd enh a sb e ena s so c i a t edw i thn eg a t iv e imp l i c a t ion sfo rth ec a r er e c ip i en t ,in c lud inganin c r e a s edr i sko fr e s id en t i a lc a r ep l a c em en t a sw e l la sah igh e rpo t en t i a lfo re ld e rabu s e(E m l e t ,1996 ;Y a f f ee ta l . ,2002) . S ev e r a lfo rm so fbu rd en ,su cha sphy s i c a l ,p sy cho log i c a l ,so c i a l ,emo t ion a l ,and f in an c i a lbu rd en ,m ayb eexp e r i en c edbyICPWD(Don a ld son&Bu rn s ,1999 ;Em l e t ,1996 ) . Su chc a r eg iv e r so f t enexp e r i en c eamu l t i f a c e t edr e spon setonum e rou ss t r e s so r sa s so c i a t ed w i thth ec a r eg iv ingexp e r i en c e(Ep s t e inLubowe ta l .2008 ;K a suy a ,Po lg a rB a i l ey ,& T ak eu ch i ,2000 ) .C a r eg iv e rbu rd enc anb efu r th e rin f lu en c edbyo th e rf a c to r s ,in c lud ingth e ICPWD ’ sp e r c ep t iono ff am i lyr e l a t ion sh ip s ,cu l tu r e ,andso c i a limp a c t s(E t t e r s ,Good a l l ,& H a r r i son ,2008 ) .Th ecu l tu r a lb a ckg roundo fth eind iv idu a l sinvo lv edc anin f lu en c ea c a r eg iv e r ’ sp e r c ep t iono ff am i l i a lob l ig a t ion sandcon s equ en t lyi n f lu en c eth e i rp e r c ep t iono f th ebu rd enth eyc a r ryr e l a t edtoth ec a r eg iv ingro l e(E t t e r se ta l . ,2008 ) .Fo rex amp l e ,f i r s t g en e r a t ionCh in e s eC an ad i an sw i thas t rongs en s eo ff i l i a lr e spon s ib i l i tym ayp e r c e iv el e s s bu rd ena s so c i a t edw i thc a r eg iv ingth ana na c cu l tu r a t edth i rd g en e r a t ionCh in e s eC an ad i an who s eexp e r i en c e sh av eb e enin f lu en c edby W e s t e rncu l tu r e(M iy aw ak i ,2015 ) .I ti sc r i t i c a l fo rPCP stoa cknow l edg eth a tac a r eg iv e r ’ sp e r c ep t iono fbu rd eni sam a jo rr i skf a c to rfo r 25   poo rad ap t a t iontoth ec ar eg iv e rro l eandmo s to f t enp r e s en t sinp r im a ryc a r ea spoo rh e a l th andd ep r e s s ion(Don a ld son&Bu rn s ,1999 ;Ep s t e in Lubowe ta l . ,2008 ) . Num e rou ss t r e s so r s ,su cha sch a l l eng ingb eh av iou r sbyth ep a t i en tw i thd em en t i a , co r r e l a t ew i tha l lf a c e t so fc a r eg iv e rbu rd en ,wh e r e a sin c r e a s ingl im i t a t ion so fADL sand IADL sinth ed em en t i ap a t i en tco r r e l a t ew i thg r e a t e rp e r son a lbu rd enfo rth ein fo rm a l c a r eg iv e r(D iw an ,2004 ) .A sth ed i s e a s ep rog r e s s e sandc a r en e ed sin c r e a s e ,sodo e sth e l ev e lo fc a r eg iv e rbu rd ens i n c eth ein fo rm a lc a r eg iv e rw i l ln e c e s s a r i lyh av el e s sab i l i tyand t im etoadd r e s sth e i rownn e ed sandp e r son a lh e a l thr equ i r em en t s(Nguy en ,2009 ) .C rooge t a l .(2006 )s t a t eth a th igh e rl ev e l so fp e r c e iv edbu rd enm aym an i f e s ta sanx i e ty ,ang e ro r r e s en tm en ttow a rd sth ec a r er e c ip i en tinadd i t iontof e e l ing so fcon s t r a in t ,f e e l ing so f in ad equ a cyinc a r ep rov i s ion ,andf e e l ing so fso c i a lr e s t r i c t ion . W i thou tad equ a t esuppo r t ,sub s equ en tro l es t r a inandbu rd enc anl e adtod i s t r e s s , g en e r a t ingpoo rou t com e sfo rth ein fo rm a lc a r eg iv e ra sw e l la sfo rth ec a r er e c ip i en t (Fow l e r ,H an ey ,&Ru t l edg e ,2014 ) .Agg a rw a le ta l .(2003 )ag r e e ,s t a t ingth a tin ad equ a t e c a r eg iv e rsuppo r tc anadv e r s e lya f f e c tth equ a l i tyo fc a r eth a tICPWDa r eab l etop rov id e . Fu r th e rmo r e ,i fICP WDb e com ein c ap ab l eo fcon t inu ingth e i rro l edu etod i s t r e s s ,th e r ei san in c r e a s edr i skfo rin s t i tu t ion a l i z a t ion ,con c e iv ab lyfo rbo thth ec l i en tandth ein fo rm a l c a r eg iv e r(C IH I ,2010b ) .Con s equ en t ly ,th ee f f e c t so fc a r eg iv ingonth eh e a l tho fICPWD “ con t inu etob eimpo r t an ta tbo thth eind iv idu a landso c i e t a ll ev e l ”(Gon z a l e z ,Po l an sky , L ipp a ,W a lk e r ,&F eng ,2011 ,p .528 ;S chub e r te ta l . ,2008 ,p .1737 ) . Chang ing W ea th e rA longth eJou rn ey:Fa c to r stha tIn f lu en c eBu rd en Und e r s t and ingtho s ef a c to r sth a tin f lu en c eanin fo rm a lc a r eg iv e r ’ sl ev e lo fbu rd en , w e l lb e ing ,andad ap t a t ionh a ss ign i f i c an timp l i c a t ion sfo rPCP s ,p a r t i cu l a r lyw i thr e sp e c tto 26   th eid en t i f i c a t ionandu t i l i z a t iono fac a r eg iv e r ’ sownr e sou r c e stop rov id esuppo r tandd i r e c t in t e rv en t ion s .Th e r ea r es ev e r a ld e t e rm in an t sth a tm aypo s i t iv e lyo rn eg a t iv e lyin f lu en c e c a r eg iv e rbu rd en ,w e l l b e ing ,andad ap t a t ioninICPWD .D emog r aph i cf a c to r sin c lud e c a r eg iv e rag e ,g end e r ,l iv inga r r ang em en t s ,r e l a t ion sh ipw i thth ep a t i en t(Don a ld son& Bu rn s ,1999 ;Em l e t ,1996 ) ,andcu l tu r a lch a r a c t e r i s t i c s(E t t e r se ta l . ,2007 ) .Impo r t an t con t ex tu a lf a c to r sin c lud ec a r eg iv e rch a r a c t e r i s t i c s(Don a ld son&Bu rn s ,1999 ;Em l e t , 1996 ) ,a c c e s s ib i l i tyo rr e t en t iono fso c i a lsuppo r t ,andb eh av iou r a li s su e sth a tm ayb e d em on s t r a t edbyc a r er e c ip i en t s( Co t r e l landEng e l ,1999 ;Don a ld son&Bu rn s ,1999 ;Em l e t , 1996 ;T r emon t ,2011 ) .Th e s ef a c to r sw i l lb ed i s cu s s edinmo r ed ep thinth efo l low ing s e c t ion s . E thn i c i ty. I ti simpo r t an ttocon s id e re thn i c i tyandcu l tu r einanyd i s cu s s iono fth e exp e r i en c e so fICPWDa si tc anb ein f lu en t i a lth roughth een t i r ed em en t i ajou rn ey .Cu l tu r a l v a lu e s ,su cha sf i l i a lr e spon s ib i l i tyandf am i l i smc ane i th e rpo s i t iv e lyo rn eg a t iv e lyimp a c t th ec a r eg iv ingexp e r i en c e so fcu l tu r a l lyandl i ngu i s t i c a l lyd iv e r s e(CALD )ICPWD (Bough twood ,Ad am s ,Sh an l ey ,S an t a lu c i a ,&Ky r i a zopou lo s,2011 ;M iy aw ak i ,2015 ) .Fo r ex amp l e ,f i l i a lr e spon s ib i l i tyh a sb e enid en t i f i eda sap r ev a i l ingcop ingm e ch an i sm (Bough twoode ta l . ,2011 ) ;how ev e r ,as t rongs en s eo ff am i l i sm( acu l tu r a lv a lu e“… in wh i chth en e ed so fth ef am i lya sag roupa r emo r eimpo r t an tth anth en e ed so fanyind iv idu a l f am i lym emb e r ”[ “F am i l i sm ” ,2016 ] ) ,h a sb e ena s so c i a t edw i thn eg a t iv eimp a c t son in fo rm a lc a r eg iv e rh e a l thandh igh e ra c coun t so fbu rd enandd i s t r e s s(Kn igh te ta l . ,2002 ) . In t e r e s t ing ly ,no ta l ls tud i e sh av efoundas ign i f i c an tconn e c t ionb e tw e enf am i l i sm andh e a l thou t com e s .As tudybyKn igh tandS ay egh(2010 )foundnoev id en c etosuppo r tan a s so c i a t ionb e tw e enf am i l i sm ,bu rd en ,a ndh e a l thou t com e sinanyo fSp an i sh ,Ko r e an , 27   A f r i c anAm e r i c an ,C au c a s i anAm e r i c an ,o rKo r e anAm e r i c ans i tu a t ion s .I tw a sin s t e ad foundth a tind iv idu a lcop ings ty l e s ,wh i chadm i t t ed lyc anb ein f lu en c edbycu l tu r e ,h ada g r e a t e rimp a c tonbu rd enandh e a l thou t com e s .   S tud i e sh av efoundth a tth ep e r c ep t iono fbu rd eni sin f lu en c edbye thn i c i ty .Th e s tudybyKn igh te ta l .(2002 )d e t e rm in edth a tA f r i c anAm e r i c anc a r eg iv e r sr epo r t edl e s s bu rd enth anth e i rC au c a s i ancoun t e rp a r t s .Th i sf ind ingi sfu r th e r suppo r t edbyD i lwo r th And e r sone ta l .(2002 ) ,whofoundth a td ep r e s s ionandbu rd enw e r eh igh e ramong s t C au c a s i anc a r eg iv e r sth anamong s tA f r i c anAm e r i c anc a r eg iv e r s .Th el a t t e rau tho r ss t a t e th a tth i sm ayb ea t t r ibu t edtoth ecu l tu r a lso c i a l i z a t ionw i th inA f r i c anAm e r i c an commun i t i e sth a tsh ap eexp e c t a t ion sandf e e l ing stow a rd sc a r eg iv ing(D i lwo r th And e r sone t a l . ,2002 ) ,su cha sth ed ev e lopm en to fin t e rd ep end en c eandexp e c t edr e c ip ro c i tyw i th in f am i lym emb e r s(F r ank l in ,1997 ) .A f r i c anAm e r i c anf am i l i e sm aya l soid en t i fymo r ew i th t r ad i t ion a lv a lu e sth a ten cou r ag ec a r ep rov i s ionfo rd ep end en tr e l a t iv e s(L aw ton ,R a j agop a l , B rody ,&K l eb an ,1992 ) .L ik ew i s e ,as tudybyRo f fe ta l .(2004 )po s i t sth a tA f r i c an Am e r i c anin fo rm a lc a r eg iv e r sexp e r i en c emo r epo s i t iv ea sp e c t so fc a r eg iv ingth anth e i r C au c a s i ancoun t e rp a r t sa sw e l la slow e rr epo r t edl ev e l so fanx i e tyandd i s t r e s sinr e spon s eto b eh av iou r a landp sy cho log i c a lsymp tom so fd em en t i a(BPSD )inth ec a r er e c ip i en t . Ag eandg end e r .A l thoughas tudybyC IH I(2010b )foundth a tth eg end e randag e o fth ein fo rm a lc a r eg iv e rd idno tg r e a t lyimp a c tth el ev e lo fth e i rd i s t r e s s ,p r ev iou sr e s e a r ch h a sshownag r e a t e ra s so c i a t ionb e tw e enbu rd enandd i s t r e s sinf em a l ein fo rm a lc a r eg iv e r s comp a r edtoth e i rm a l ecoun t e rp a r t s .Fo rex amp l e ,along i tud in a ls tudybyG r a f s t romand W inb l ad(1995 )foundth a td augh t e r sr epo r t edmo r ebu rd enandn eg a t iv ephy s i c a le f f e c t s f romc a r eg iv ingth anson s .Don a ld son ,T a r r i e r ,andBu rn s(1998 )a l sofoundth a tf em a l e 28   ICPWDexp e r i en c eg r e a t e rd i s t r e s sandsu b j e c t iv ebu rd enth anm a l eICPWD .S im i l a r ly ,ina s tudybyB rod a tye ta l .(2014 ) ,f em a l eICPWDr epo r t edh igh e rl ev e l so fbu rd enth anth e i r m a l ecoun t e rp a r t s .Th i si ssuppo r t edbymo r er e c en tr e s e a r chbyPöy s t ie ta l .(2012 )who foundth a tm a l eICPWDexp e r i e n c el e s sbu rd enth a tf em a l eICPWDr eg a rd l e s so fth e s ev e r i tyo fth ec a r er e c ip i en t ’ sd em en t i a .Comp a r edtom a l ein fo rm a lc a r eg iv e r s ,f em a l e in fo rm a lc a r eg iv e r sh adin c r e a s edr epo r t so fpoo rp sy cho so c i a lh e a l thandw e l l b e ing (Ch iou ,Ch en ,& W ang ,2005 ;S ch u l z&B e a ch ,1999 ) ,h igh e rl ev e l so fs t r e s s(M e l l e r ,2001 ) , andh igh e rr a t e so fd ep r e s s ion(Ch ioue ta l . ,2005 ;Du r a ,S tuk enb e rg ,&K i e co l t G l a s e r , 1991 ;Fudg e ,N eu f e ld ,&H a r r i son ,1997 ) .H igh e rr epo r t so fbu rd eninyoung e rf em a l e ICPWDm ayinp a r tb er e la t edtoth enum e rou scomp e t ingd em and sm anysu chwom enf a c e , s in c eth eym ayb ec a r ingfo rane ld e r lyr e l a t iv e ,b eth ep r im a ryc a r eg iv e rfo rth e i rown ch i ld r en ,b em a in t a in ingahou s eho ld ,andho ldemp loym en tcomm i tm en t s . R e la t ion sh ipb e tw e enth eca r eg iv e randca r er e c ip i en t .Th en a tu r eo fth e r e l a t ion sh ipb e tw e enth eICPWDandc a r er e c ip i en th a sa l sob e enfoundtoco r r e spondto l ev e l so fs t r e s sinth ein fo rm a lc a r eg iv e r .A scou ldb eexp e c t ed ,apoo rr e l a t ion sh ipb e tw e en th ein fo rm a lc a r eg iv e randc a r er e c i p i en tp r io rtoth ecomm en c em en to fc a r eg iv ing co r r e l a t edw i thin c r e a s edc a r eg iv e rbu rd en(R in a ld ie ta l . ,2005 ) .Ac ro s ss e c t ion a ls tudyby C ampb e l le ta l .(2008 )id en t i f i edth a tapoo rr e l a t ion sh ipb e tw e enth ein fo rm a lc a r eg iv e rand c a r er e c ip i en t ,a sev i d en c edbypoo rcommun i c a t iono ral a cko fa f f e c t ionandr appo r t ,tob e as ign i f i c an tp r ed i c to ro fbu rd en .Spou s e sh av ea l sob e enfoundtob ea tin c r e a s edr i skfo r bu rd encomp a r edtoo th e rin fo rm a lc a r eg iv e r s(Em l e t ,1996 ) .A ssuppo r tfo rth i sa s s e r t ion , C IH I(2010b )foundth a ti ti smo r el ik e lyfo rspou s e stoexp e r i en c ed i s t r e s sandbu rd enth an 29   o th e rin fo rm a lc a r eg iv e r sfo rs ev e r a lr e a son s :th eyo f t enl iv ew i thth ec a r er e c ip i en t ,p rov id e mo r ec a r e ,a c ta sth ep r im a ryc a r eg iv e r ,anda r eo f t ene ld e r lyth em s elv e s . Ca r eg iv e r s ’ownt ra i t s .I th a sh i s to r i c a l lyb e ena s sum edth a ton lyth ecogn i t iv e ch ang e sandin c ap a c i t i e so fth ep a t i en tw i thd em en t i awou ldimp a c tth el ev e lo fbu rd enand s t r e s sexp e r i en c edbyth e i rin fo rm a lc a r eg iv e r s .How ev e r ,r e c en tl i t e r a tu r eh a sexp lo r edth e w ay sinwh i chth ec a r eg iv e r ’ sowna t t r ibu t e sandt r a i t sc ana f f e c tth e i rp e r c ep t ion so fbu rd en (Don a ld son&Bu rn s ,1999 ) .Aue ta l .(2010 )s t a t edth a tth eimp a c to fc a r eg iv ingth a th a s b e enc au s edbyth ec a r er e c ip i en t ’ sd i s e a s em aya c tu a l lyb emodu l a t edbyanin fo rm a l c a r eg iv e r ’ sownp e r son a lch a r a c t e r i s t i c s .As tudybyG aug l e r ,K an e ,andN ew com e r(2007 ) sugg e s t sth a tc a r eg iv e rr e s i l i en c e(m e a su r edbyh ighc a r eg iv ingd em and sa s so c i a t edw i th lowbu rd en )i sapo s i t iv ef a c to rinad ap t a t ion ,w i thg r e a t e rp ro f i c i en cyinth ec a r eg iv ingro l e andw i thd e l ay ednu r s inghom ep l a c em en to fth ec a r er e c ip i en t .Add i t ion a l ly ,C ampb e l le t a l .(2008 )d e t e rm in edth a td e c r e a s edcon f id en c einth ein fo rm a lc a r eg iv e ri sp r ed i c t iv eo f in c r e a s edbu rd enandd i s t r e s s .Incomp a r i son ,tho s ein fo rm a lc a r eg iv e r swhod emon s t r a t ea mo r epo s i t iv ecop ings ty l eandah igh e rl ev e lo fp e r c e iv eds e l f e f f i c a cyw e r emo r el ik e lyto exp r e s sar edu c edl ev e lo fc a r eg iv ingbu rd en(V anD en W i jng a a r t ,V e rnoo i j D a s s en ,& F e l l ing ,2007 ) . S ev e r i tyo fd i s ea s eandca r er e c ip i en tb ehav iou r s .C IH I(2010b )foundth a t cogn i t iv eimp a i rm en tandth enumb e ro fin fo rm a lc a r ehou r sr e c e iv edw e r einv e r s e lyr e l a t ed toc a r eg iv e rd i s t r e s s .Inf a c t ,C IH I(2010b )foundth a ttho s ec a r er e c ip i en t swhor e c e iv ed21 o rmo r ehou r so fin fo rm a lc a r ep e rw e ekw e r efou rt im e smo r el ik e lytoh av eanin fo rm a l c a r eg iv e rind i s t r e s sth antho s ewhor e c e iv edl e s sth an10hou r sp e rw e ek .Th i si sl ik e ly r e l a t edtoth eth ef a c tth ec a r er e c ip i en ti sinal a t e rs t ag eo fd em en t i a ,p l a c ingg r e a t e rs t r a in 30   onth ec a r eg iv e rint e rm so fphy s i c a lc a r eandm an ag ingBPSD ,wh i chin c r e a s e sth roughou t th ed i s e a s et r a j e c to ry .F e e l ing so fbu rnou tr e l a t edtoc a r eg iv ingd em and sp l a c ec a r eg iv e r sa t h ighr i skfo rbu rd en .How ev e r ,S chub e r te ta l .(2008 )a rgu eth a tth ec a r er e c ip i en t ’ sd e c l in e incogn i t iv efun c t iondo e sno tcon t r ibu t etoc a r eg iv e rbu rd ena smu cha sBPSDdo e s .A co r r e l a t ionh a sb e enfoundinnum e rou ss tud i e sb e tw e enth ef e e l ingo fc a r eg iv e rbu rd enand th ein c id en c eo fch a l l eng ingb eh av iou r sexh ib i t edbyth ec a r er e c ip i en t ,su cha sr e s i s t an c eto p e r son a lc a r eo rphy s i c a labu s eo fth ein fo rm a lc a r eg iv e r(B rod a tye ta l . ,2014 ;C IH I ,2010b ; Y a f f ee ta l . ,2002 ) . So c ia lsuppo r t .So c i a lsuppo r t ,o rl a ckth e r eo f ,c ana l socon s id e r ab lyimp a c tth e exp e r i en c e so fICPWDth roughth ed em en t i ajou rn ey .I tc anb ed iv id edin toth r e ee l em en t s : ( a )asuppo r tn e two rkcomp r i s edo fr e sou r c e s ;(b )fun c t ion a lsuppo r t ,a sinhom esuppo r t s ; and( c )p e r c e iv edsuppo r t ,a sinth ec a r eg iv e r ’ ss a t i s f a c t ionw i th ,andsub j e c t iv eev a lu a t ion o fth esuppo r tav a i l ab l etoh im /h e r(B a r r e r a ,1986 ;Hou s e ,Umb e r son ,&L and i s ,1988 ; V aux ,1988 ) .O fth eth r e e ,th el ev e lo fp e r c e iv edsuppo r th a sb e ensugg e s t edtob eth e g r e a t e s tmod e r a to ro fc a r eg iv e rh e a l thou t com e s(Lubb en ,1988 ;Tu rn e r& M a r ino ,1994 ) .A s tudyby W i lk sandC room(2008 )foundth a tso c i a lsuppo r tno ton lya f f e c t sh e a l th ou t com e s ,bu tl ik e lya l socon t r ibu t e stor e s i l i en c einICPWDdu r ings t r e s s fu lt im e s .Th e au tho r sfoundth a tin fo rm a lc a r eg iv e r sw e r e“4 .9t im e smo r el ik e lytoexp e r i en c eh igh r e s i l i en c ew i thh ighf am i lysuppo r t ;1 .8t im e smo r el ik e lytoexp e r i en c eh ighr e s i l i en c ew i th h ighf r i endsuppo r t ;and3 .8t im e smo r el ik e lytoexp e r i en c eh ighr e s i l i en c ew i thh ighov e r a l l so c i a lsuppo r t(p<0 .01 ) ”(p .361 ) .Th eICPWD ’ sp e r c ep t ion so fin fo rm a t iond i s s em in a t ion ands e rv i c ep rov i s ionm aya l soin f lu en c eth e i ra c c ep t anc eo fsuppo r t ,andcon s equ en t lyth e amoun to fsuppo r tth eya c tu a l lyr e c e iv e . 31   M emb e r so fth ep r im a ryc a r et e am ,in c lud ingPCP s ,a r ef r equ en t lyth ep r in c ip a l fo rm a lc a r ep rov id e r sanda r eo f t enth ef i r s tconn e c t ionfo ra c c e s stosuppo r ts e rv i c e sfo r bo thc a r er e c ip i en t sandth e i rin fo rm a lc a r eg iv e r s(M c In to sh ,Sw an son ,Pow e r ,&R a e , 1998 ) .PCP smu s tth e r e fo r emov eb eyonds imp lyp rov id ingc a r etoth ep a t i en tw i thd em en t i a andin s t e ada l socomm i ttosuppo r t ingth eICPWD(Agg e rw a le ta l . ,2003 )anda s s i s t ing th emtob e t t e rund e r s t andandn av ig a t eth eh e a l thc a r esy s t em(H e rk lo t s ,2015 ) . A l thoughth ec a r ecoo rd in a t ionb e tw e enPCP sandsuppo r t iv es e rv i c e s“ i sad e f in ing ch a r a c t e r i s t i co fp r im a ryc a r e ”(Ro thm an& W agn e r ,200 3 ,p .256 ) ,m anysu chs e rv i c e sa r e o f f e r edinaw ayth a ti sf r agm en t edandpoo r lycoo rd in a t ed ,o f t enl e ad ingtod i s s a t i s f a c t ion among s tin fo rm a lc a r eg iv e r s(G i l l ,Ku lu sk i ,J a akk im a in en ,Up shu r ,& Wod ch i s ,2013 ) . R e inh a rd ,G iv en ,P e t l i ck ,andB em i s(2008 )s t a t eth a t ,inadd i t iontof r agm en t edh e a l thc a r e s e rv i c e s ,in fo rm a lc a r eg iv e r sh av eh i s to r i c a l lyr e c e iv edin ad equ a t esuppo r tf romh e a l th p ro f e s s ion a l sw i thr eg a rd stom an ag ingth e i rcon cu r r en tc a r eg iv ingd em and sando th e r r e spon s ib i l i t i e s .In fo rm a lc a r eg iv e r sa r eo f t enl e f tun aw a r eo fav a i l ab l ecommun i tys e rv i c e s andsuppo r t swh enth ein fo rm a t ionsh a r ingbyPCP s ,andth ed i r e c t ionf romth em ,a r e in su f f i c i en ttom e e tth er equ i r em en t so fth ec a r eg iv e r ’ ss i tu a t ion(Agg e rw a le ta l . ,2003 ; Rob in son ,Bu ckw a l t e r ,&R e ed ,2013 ) ;th i sc anb eam a jo rb a r r i e rtos e rv i c eu t i l i z a t ion (S t r a in&B l and fo rd ,2002 )andm ayp r e c ip i t a t eunm e tn e ed sfo rbo thth ec a r er e c ip i en ta s w e l la sth ein fo rm a lc a r eg iv e r(D iw ane ta l . ,2004 ) .Fu r th e r ,H in tone ta l .(2007 )po s i tth a t suppo r t sa r eo f t enno tpu tfo rw a rdun t i li s su e ssu cha sBPSDb e com eunm an ag e ab l e ,a ph enom enonknowna s“ r e a c t iv ec a r e ”(p .1489 ) .Ap ro a c t iv e ,r a th e rth anr e a c t iv e ,app ro a ch th a ti sah a l lm a rko fp r im a ryc a r ep r a c t i c ec anb eapp l i edtoth ep rov i s iono fsuppo r tto 32   ICPWD ,u t i l i z ingth es t ag e so fd em en t i aa sagu id ea longw i thth es t a t edn e ed so find iv idu a l c a r eg iv e r s . S e rv i c eu t i l i za t ion .R e su l t so fas tudybyRob in sone ta l .(2013 )foundth a th igh e r l ev e l so fbu rd enandd ep r e s s ion ,a sw e l la sl im i t edso c i a lsuppo r t ,w e r er epo r t edbyICPWD c a r eg iv e r swhod idno tu s eav a i l ab l es e rv i c e s ,su cha sr e sp i t eo rsuppo r tg roup s .A l though ICPWDwhor em a ininth ewo rk fo r c eandpo s s e s smu l t ip l ero l e sc anf e e lcomp e l l edto u t i l i z eth e s etyp e so fs e rv i c e sino rd e rtom a in t a inth e i rr e spon s ib i l i t i e s(Rob in sone ta l . , 2013 ),ICPWDg en e r a l lyt endno ttou s eth em ;su chat end en cyi sw e l l do cum en t ed th roughou tth ec a r eg iv e rl i t e r a tu r e(Chodo she ta l . ,2006 ;Jo l inge ta l . ,2008 ;P lo ege ta l . , 2009 ;Rob in son ,2005 ) .Wh enICPWDdoac c e s ss e rv i c e s ,th eyw i l lo f t enh av ecommon ly w a i t edun t i ll a t einth ed i s e a s ep ro c e s stoa skfo ra s s i s t an c e(Rob in sone ta l . ,2013 )o rwh en c a r er e c ip i en t sh av eo f t enb e com etoof r ag i l etob en e f i tf romth em(Z a r i t ,S t eph en s , Town s end ,G r e en e ,&L e i t s ch ,1999 ) .W a i t ingtoa c c e s sfo rm a ls e rv i c e ssu cha shom e suppo r t ,r e sp i t e ,o radu l td ayp rog r am sc ana l soimp a c tICPWDa s ,byth et im eth eya c c e s s th e s es e rv i c e s ,th eym aya l sob eexp e r i en c ingtho s en eg a t iv ee f f e c t so fth ec a r eg iv ingro l e th a tc anl e adtod i s t r e s sandbu rnou t .Fu r th e r ,i fICPWDw a i tun t i lac r i s i so c cu r stoa c c e s s s e rv i c e s ,th es e rv i c e sm ayno tb er e ad i lyav a i l ab l e ,po t en t i a l lyl e ad ingtoth ec a r eg iv e r tu rn ingtosuppo r tf romana cu t ec a r ef a c i l i tywh enth eyc annolong e rcop e . Ac ro s ss e c t ion a ld e s c r ip t iv es tudyp e r fo rm edbyP lo ege ta l .(2009 )foundth a t c a r eg iv e r swhod idpu r su eadd i t ion a lh e lpsough tth i sa s s i s t an c ef romf am i ly ,f r i end s ,hom e h e a l ths e rv i c e s ,commun i tysuppo r ts e rv i c e s ,and /o rth e i rphy s i c i an s .In t e r e s t ing ly ,th e h igh e s tnum b e ro fs tudyp a r t i c ip an t s(37 .2% )n am edth e i rphy s i c i ana sth e i rf i r s tsou r c eo f suppo r t(P lo ege ta l . ,2009 ) .Inf a c t ,PCP sa r emo s to f t enth ef i r s tr e sou r c eth a tin fo rm a l 33   c a r eg iv e r scon t a c ta sasou r c eo fn e ed edsuppo r t(A l zh e im e r ’ sA s so c i a t ion ,2001 ;F il l i te ta l . , 1999 ).A l thoughin fo rm a lc a r eg iv e r sr epo r t eda c c e s s ingh e a l thc a r esuppo r tbyw ayo fth e i r phy s i c i an ,P lo ege ta l .(2009 )a l sono t edth a tm anyc a r eg iv e r sind i c a t eanapp r eh en s ion abou tu s ingcommun i tys e rv i c e sdu etoin con s i s t en tc a r ep rov i s io n ,th esub s t an t i a lco s t a s so c i a t edw i ths e rv i c e s ,in f l ex ib l et im ef r am e sfo rs e rv i c ep rov i s ion ,andal a cko fcoh e s ion b e tw e enhom eandcommun i tys e rv i c e s .Ro thm anand W agn e r(2003 )a l soa cknow l edg ed th a tc a r ecoo rd in a t iont end stob ein ad equ a t eb e tw e enco mmun i tys e rv i c e sandp r im a ryc a r e sy s t em s . Inas tudybyRob in sone ta l .(2013 ) ,mo s to fth eICWPDp a r t i c ip an t sp rov id edth e m a jo r i tyo fth en e ed edc a r ea lon e ,u s inganav e r ag eo fon lyn in ehou r sp e rw e eko f add i t ion a lin fo rm a lh e lp ,su cha sth ea s s i s t an c eo fano th e rf am i lym emb e r ,andfou rhou r so f p ro f e s s ion a lh e lpp e rw e ekf romfo rm a lsuppo r t iv es e rv i c ep rov id e r s ,su cha shom esuppo r t . Rob in sone ta l .(2013 )foundth a tth eu s eo fth e s es e rv i c e sw a sr e l a t edtoth er e l a t ion sh ip b e tw e enth ec a r eg iv e randc a r er e c ip i en t(p=0 .001 ) ;c a r eg iv e r swhocho s eno ttoa c c e s sth e s e rv i c e sw e r emo r eo f t enspou s e so fth ec a r er e c ip i en tr a th e rth anadu l tch i ld r en .Th i s r e l a t ion sh ipw a sr e f l e c t edinth es tudya si tw a sfoundt h a tc a r eg iv e r swhosough tsuppo r t iv e s e rv i c ep rov i s ionandr e sp i t es e rv i c e sw e r emu chyoung e rth antho s ec a r eg iv e r swhou s ed n e i th e r(p=0 .010 )(Rob in sone ta l . ,2013 ) . O ld e rICPWDa r eo f t enspou s e sandth eyw i l lp r edom in an t lyh av eh adlong e r r e l a t ion sh ip sw i thth ec a r er e c ip i en t .A sar e su l t ,th e s ec a r eg iv e r sm ayf e e lth a tth ec a r eg iv e r ro l ei sbo thacu s tom a ryandexp e c t edp a r to fth er e l a t ion sh ipt r a j e c to ry(Rob in sone ta l . , 2013 ) .On c ein fo rm a lc a r eg iv e r sh av ee s t ab l i sh edth em s e lv e sinac a r eg iv e rro l e ,th eyo f t en b eg intof e e lth a tth eya r eth eon lyon e scomp e t en tenoughtop rov id eth ec a r e ;th eyth en 34   o f t enb e com eunw i l l ingandf r igh t en edtosh a r ec a r ep rov i s ionw i tho th e r s(Bo l andand S im s ,1996 ;Rob in sone ta l . ,2005;Z a r i te ta l . ,1999 ).Add i t ion a l ly ,s e rv i c eu t i l i z a t ionc an h av eemo t ion a limp l i c a t ion sfo rth ec a r eg iv e r ,su cha sf e e l ing so fgu i l ti fth ec a r er e c ip i en ti s r e s i s t iv etos e rv i c e s ,o rf e e l ing so fw e akn e s si fth ec a r eg iv e rdo e sno tf e e lc ap ab l eo f fu l f i l l ingth ec a r eg iv ingro l e(Rob in sone ta l . ,2005 ) .Du etoth e i remo t ion a lt i e stoth e s i tu a t ion ,th espou s a lc a r eg iv e rm ayno tev enr e cogn i z eth epo t en t i a lb en e f i t so f f e r edby s e rv i c eu t i l i z a t ion(Rob in sone ta l . ,2005 ) .Th i sc anth enl e adtoani so l a t edc a r er e c ip i en t / c a r eg iv e rdy ada sth ec a r eg iv e rb e com e sl e s sl ik e lytoa c c ep ta s s i s t an c e ,r eg a rd l e s so fth e po t en t i a ld e t r im en ttoth e i rownh e a l th(Bo l and&S im s ,1996 ) . Th eT rav e lGu id e :Ro l eo fth ePCPinSuppo r t ingICPWD In fo rm a lc a r eg iv e r sexp e r i en c ech ang ingn e ed sov e rt im eandth i sb e co m e sev id en t th roughou tth ec a r eg iv ingp ro c e s sandjou rn ey(S a l f ie ta l . ,2005 ;W a lde ta l . ,2003 ) . A l thoughth en e ed so fICPWDv a ryb e tw e enind iv idu a l sandth es i tu a t ion sth eyf a c e ,m any n e ed sc ana l sob ean t i c ip a t eda sth ec a r er e c ip i en tp rog r e s s e sth roug hth ed i s e a s ep ro c e s s . Su chc a r eg iv e rn e ed sm ayin c lud eemo t ion a lsuppo r t ,edu c a t ion ,adv i c e ,f a c i l i t a t iono f suppo r ts e rv i c ep rov i s ion ,r e f e r r a l stocommun i tysuppo r t sandp rog r am s ,anda s s i s t an c e w i thh e a l thc a r esy s t emn av ig a t ion(Down se ta l . ,2006 ;S al f ie ta l . ,2005 ) .PCP sh av ea c r i t i c a lro l einm e e t ingth en e ed so fICPWDandth e i rc a r er e c ip i en t s .Th i si sp a r t i cu l a r ly impo r t an tfo rPCP sfo rth r e er e a son s :1 )p r im a ryc a r ep r a c t i c ei son eo fth ea c c e s spo in t sfo r commun i tys e rv i c e s ;2 )PCP sa r eo f t enth ep r e f e r r edsou r c eo fh e a l thandr e sou r c e in fo rm a t ionfo rICPWD(Down se ta l . ,2006 ) ;and3 )PCP sc anadvo c a t efo rch ang einth e po l i cya r en a .Th e r e fo r e ,PCP sando th e rm emb e ro fth ep r im a ryc a r et e ama r einap ivo t a l po s i t iontoe f f e c t iv e lysuppo r tICPW Dandtom ak ead i f f e r en c einth e i rou t com e s 35   (Don a ld son&Bu rn s ,1999 ;K a tb amn a ,Bh ak t a ,Ahm ad ,B ak e r ,&P a rk e r ,2002 ;S imon , 2001 ) . Th ero l eo fth ePCPm ayb el ik en edtoa‘ t r av e lgu id e ’ ,a sPCP sc anh e lpth e s e c a r eg iv e r stomo r ee f f e c t iv e lyn av ig a t eth e i rc a r eg iv ingjou rn ey .Fu r th e r ,PCP sc anp rov id e ane s s en t i a l‘ ro adm ap ’toh e lpd i r e c tICP WDind i r e c t ion sth eyn e edtot r av e l du r ingth e i r jou rn ey ,a sw e l la sap l antod e a lw i thd e tou r swh enc a r eg iv e r scom eupag a in s tob s t a c l e s a longth ew ay ,su cha sana cu t ed e c l in einth ec a r er e c ip i en t ’ sfun c t iondu etoi l ln e s s .Fo r ex amp l e ,PCP sc angu id eICPWDtow a rd ssp e c i f i cr e sou r c e sth a tc anh e lptoa l l ev i a t eth e s t r e s sandbu rd enth eym ayb eexp e r i en c ing( Jo l inge ta l . ,2008 ;S cho en m ak e r s ,Bun t inx ,& D eL ep e l e i r e ,2010 ) .PCP sc ana l sou s ea s s e s sm en tandc e r t a inin t e rv en t ion stoh e lpICPWD p r ep a r efo ri s su e sth a tm aya r i s edu r ingth ec a r eg iv ingjou rn ey .Th e s ein t e rv en t ion sm ayb e s imp l e ,su cha sl end inganemp a th e t i ce a rtoth ec a r eg iv e rdu r ingano f f i c ev i s i t ,o rth eym ay b emo r ecomp l ex ,su cha sr e comm end ingaco l l abo r a t iv ec a r ep rog r am .Cu r r anand W a t t i s (2004 )s t a t eth a tin fo rm a lc a r eg iv e rsuppo r to f t enr equ i r e sco l l abo r a t iv ee f fo r t sb e tw e en h e a l thc a r eo rg an i z a t ion sands e rv i c ep ro v id e r s .Th e r ei san e edtoe s t ab l i shandan a ly z e s t r a t eg i e s ,su cha sd id a c t i cin t e rv en t ion sandsyn e rg i s t i cmu l t id i s c ip l in a ryco l l abo r a t ion s ,to h e lpPCP ss t r eng th enth econn e c t ion sb e tw e enin fo rm a lc a r eg iv e r sandav a i l ab l esuppo r t s e rv i c e s(P lo ege ta l . ,2009 ) . E f f e c t iv e lyGu id ingICPWDTh roughth e i rJou rn ey s :AP e r sonC en t r edApp roa chto Ca r e Ap e r sonc en t r edph i lo sophyi sr e comm end edind em en t i ac a r ea si ten su r e s ind iv idu a l sw i thd em en t i aa r et r e a t edw i thr e sp e c tandd ign i ty ,wh i l ep romo t ing und e r s t and ingo fth e i rp r io rl i f eexp e r i en c e sandth ed ev e lopm en to fm e an ing fu l 36   r e l a t ion sh ip sb e tw e enc a r ep rov id e r sandc a r er e c ip i en t s(A l zh e im e rSo c i e tyo fC an ad a , 2013 ) .P e r son c en t r edc a r efo cu s e sont a i lo r ingc a r etoe a chind iv idu a l ’ sn e ed s ,w i sh e s , v a lu e s ,an db e l i e f s(A l zh e im e rSo c i e tyo fC an ad a ,2013 ) .Th eu s eo fap e r son c en t r ed app ro a chw i thICPWDm ayp rov eb en e f i c i a lfo rbo thICPWDandPCP sa si ten cou r ag e s PCP stog a ing r e a t e rund e r s t and ingo fth en e ed sandexp e r i en c e so fICPWD;th i sknow l edg e andund e r s t and ingc anb eu s eda sth efound a t iononwh i chtobu i ldr e l a t ion sh ip sandgu id e th echo i c eo fsuppo r t iv ein t e rv en t ion s . Rog e r s ’(1979 )p e r sonc en t r edapp ro a cha f fo rd sc a r eb a s edonth ec a r eg iv e r ’ s sub j e c t iv eund e r s t and ingo fth e i rexp e r i en c e sr a th e rth anj u s tth eop in iono fth ePCP .Rog e r s (1979 )m a in t a in sth a tind iv idu a l sr e a c ttoth e i rexp e r i en c e sb a s edonth e i rownp e r c ep t ion s o fth es i tu a t ion ,ana s s e r t ionwh i chi sex t en s iv e lyr e f l e c t edandsuppo r t edinc a r eg iv ing l i t e r a tu r e .Fo rin s t an c e ,S cho enm ak e r se ta l .(2010 )s t a t edth a t ,“ th ew ayc a r eg iv e r sp e r c e iv e th e i rc a r ingro l eandd e a lw i thp rob l em a t i cs i tu a t ion smo r ec lo s e lyp r ed i c t sth ec a r ebu rd en ” (p .44 ) . S e l fcon c ep ti sac en t r a lid e ao fth ep e r son c en t r edapp ro a chandi sin t e r conn e c t ed w i thc a r eg iv e r s ’p e r c ep t ion so fth e i rexp e r i en c e s(M cL eod ,2015 ) .Ac a r eg iv e rm ayno tv i ew th em s e lv e sa sap a r t i cu l a r lyp ro f i c i en tc a r eg iv e r ,y e tth eym ayb ev i ew eda ssu chbyth ePCP i fth ec a r er e c ip i en td emon s t r a t e sgoodh e a l thandw e l l b e ing .Conv e r s e ly ,th ec a r eg iv e rm ay p e r c e iv eth em s e lv e stob eacomp e t en tc a r eg iv e r ,y e tev id en c eo fn eg l e c tinbo thth ec a r e r e c ip i en tandc a r eg iv e rm aysugg e s to th e rw i s etoth ePCP .Insu chas i tu a t ion ,th e invo lv em en to fso c i a lwo rkandhom eh e a l ths e rv i c e s ,p rov id edinco l l abo r a t ionw i thth e PCP ,b e com e so fp a r amoun timpo r t an c e . 37   Rog e r s ’(1979 )th eo ryi sb a s edonth r e ep r in c ip l e s :cong ru en c e(g enu in en e s s ) ; un cond i t ion a lpo s i t iv er eg a rd(m a in t a in ingapo s i t iv ea t t i tud etow a rd sth ec a r eg iv e r ) ;and emp a thy .I faPCPv i ew sth ein fo rm a lc a r eg iv e ra sa“po t en t i a l lycomp e t en tind iv idu a l ” ,th i s c anh e lptoin c r e a s eth ec a r eg iv e r ’ sf e e l ing so fs e l f wo r thandf e e l ing so fm a s t e ryinth e c a r eg iv ingro l e(M cL eod ,2015 ) .Fu r th e r ,i fth ePCPt r e a t sth ec a r eg iv e ra sap a r tn e rinc a r e , th enth ec a r eg iv e rm ayf e e lth a tth e i rknow l edg eandsk i l li sb e ingmo r eexp l i c i t ly r e cogn i z ed .App ly ingth e s ep r in c ip l e sdu r ingo f f i c ev i s i t sw i l lh e lpen su r eth a tth eICPWD f e e l ssuppo r t ed ,thu sm e e t ingth en e ed sexp r e s s edbym anyo fth ec a r eg iv e r sinth el i t e r a tu r e (K a r l s sone ta l . ,2015 ;P ro rok ,Ho rg an ,andS e i t z ,2013 ;Sh an l ey ,Ru s s e l l ,M idd l e ton ,& S imp sonYoung ,2011) . Anex amp l eo fap e r sonc en t r edin t e rv en t ionth a th a sb e end ev e lop edtoimp rov e commun i c a t ionb e tw e enfo rm a lc a r ep rov id e r sandin fo rm a lc a r eg iv e r s ,andimp rov e inp a t i en tc a r eo fc a r er e c ip i en t sw i thd em en t i ai sth es t r a t egyc a l l ed“Top5 ”(C l in i c a l Ex c e l l en c eComm i s s ion,2016 ) .   Top5i sana c ronymu s edtogu id eth ec a r eo fp e r son sw i th d em en t i a .Uptof iv es t r a t eg i e sc anb edo cumen t edonaTop5fo rmth a tc anb esh a r ed b e tw e enh e a l thc a r ep rov id e r sinbo tha cu t ec a r es e t t ing sandth ecommun i ty .Top5invo lv e s ad i s cu s s ionb e tw e enac l in i c i anandth eICPWDinwh i chth es t r a t eg i e sa r ed e t e rm in edto p e r son a l i z eandgu id eth ep a t i en t ’ sc a r e(Lux fo rde ta l . ,2015 ) .U s eo fth es t r a t eg i e sc anh e lp tod e c r e a s eag i t a t ionandch a l l eng ingb eh av iou r sth a tm ayb ed emon s t r a t edbyth ep e r son w i thd em en t i a .Top5s t and sfo r : Ta lktoth ec a r e r ; Ob t a inth ein fo rm a t ion ; Pe r son a l i z eth ec a r e ;and 38   “5 ”s t r a t eg i e sd ev e lop ed(C l in i c a lEx c e l l en c eComm i s s ion ,2016 ) . TheTop5s t r a t egyw a sd ev e lop edbyth eC a r e rSuppo r tUn i tandC en t r a lCo a s t Lo c a lH e a l thD i s t r i c t(CCLHD )inN ewSou th W a l e s ,Au s t r a l i a .Top5w a sf i r s t imp l em en t edin21ho sp i t a l sw i th inC CLHD ,fo l low edbyimp l em en t a t ioninr e s id en t i a lc a r e f a c i l i t i e s .Th es t r a t egyd r aw suponth ein fo rm a lc a r eg iv e r ’ sknow l edg eandexp e r t i s eabou t th ec a r er e c ip i en tandi sa im eda td e c r e a s inganx i e tyandd i s com fo r tfo rbo thth ec a r e r e c ip i en tandth eICPWDw h enth ec a r er e c ip i en tt r an s i t ion sb e tw e enhom e ,a cu t ec a r e ,o r longt e rmc a r ef a c i l i t i e s(C l in i c a lEx c e l l en c eComm i s s ion ,2016 ) .     On eex amp l eo faTop5s t r a t egyi s :Th ePCPt a lk sto M a ry(whoh a sb e enp rov id ing c a r efo rh e rhu sb andJ a ckfo rth r e ey e a r s )abou tJ a ck ’ su su a lrou t in ea thom eino rd e rto co l l e c tin fo rm a t ionabou twh a tm ayc au s eJ a cktob e com eag i t a t edo rexh ib i tch a l l eng ing b eh av iou r si fh emu s tb eadm i t t edtoth eho sp i t a l .M a ry s t a t e sth a tth eya lw ay sl e tth e i rdog M i t zyou tin toth ey a rda t4 :00p .m .I fJ a cki sadm i t t edtoth eho sp i t a lh em ayb e com e ag i t a t eda tth i st im eo fd ay ,th ink ingth a tth i srou t in ei sno tb e ingfo l low edwh enh ei sno ta t hom e .S t a f fshou ldre a s su r eJ a ckth a tM a ryh a sl e tM i t zyou tandh ew i l ls e t t l e .Th i ss t r a t egy c anb edo cum en t edands en ttoth eho sp i t a lw i thJ a ckfo rs t a f ftofo l low .Th i sex amp l e d emon s t r a t e sth e‘why ’( J a ckm ayb e com eag i t a t ed ) ,th es t r a t egy ,andth e in t end edou t com e , a l la sr e comm end edfo rTop5(C l in i c a lEx c e l l en c eComm i s s ion ,2016 ) .   Ev a lu a t ionofth i slow co s ts t r a t egyd emon s t r a t edno ton lypo t en t i a lh e a l thsy s t em co s ts av ing s ,bu ts ign i f i c an timp rov em en t sinICPWD ’ sexp e r i en c e s ,p a t i en tou t com e s ,and s a t i s f a c t ionbys t a f fc a r ingfo rp a t i en t sw i thd em en t i a(C l in i c a lEx c e l l en c eComm i s s ion , 2016 ) .   Fo rex amp l e ,89%o fc l in i c i an sfoundth a tu t i l i z a t iono fth eTop5s t r a t egyimp rov ed r e l a t ion sh ip sw i thICPWD(Lux fo rde ta l . ,2015 ) .Fu r th e r ,ICPWDfoundth a tu s ag eo fth e 39   Top5s t r a t egym ad eth emf e e lr e sp e c t edbyc l in i c i an swh i l e88 .5%r epo r t edf e e l ingmo r e eng ag edinth ep a t i en t ’ sc a r e(Lux fo rde ta l . ,2015 ) .R eg r e t t ab ly ,nol i t e r a tu r eh a sb e enfound sugg e s t ingth a tTop5o ras im i l a rs t r a t egyh a sb e end ev e lop edo rimp l em en t edinC an ad a ; how ev e r ,i t su s eh a sth epo t en t i a ltog r e a t lyimp rov eou t com e sfo rbo thICPWDandp a t i en t s w i thd em en t i ainC an ad a . I fICPWDf e e la te a s ew i thth ec a r eth a tth ec a r er e c ip i en ti sr e c e iv inginah e a l th c a r e f a c i l i ty ,th enth eya r el ik e lytoexp e r i en c el e s ss t r e s sandbu rd en .MyG r andp a ’ sb iog r aphy w a sd ev e lop edinl in ew i thTop5s t r a t egyandw a ssu c c e s s fu l lyu s eddu r ingh i sl a s ta cu t e c a r es t ay .On c eth eb iog r aphyw a sin t eg r a t edin toG r andp a ’ sch a r t ,th equ a l i tyo fc a r e p rov id edtoh imimp rov edd r am a t i c a l ly ,thu spo s i t iv e lyi mp a c t ingno ton lyG r andp abu tmy G r andm aandAun twhop rov id eda l lo fh i sin fo rm a lc a r e.Th i s b iog r aphyi sp r e s en t edin App end ixC. A s s e s sm en to fICPWD :D e t e rm in ingN e ed sTh roughth eJou rn ey As ign i f i c an tamoun to fl i t e r a tu r een cou r ag e sPCP stot r e a tp a t i en t sw i thd em en t i a andth e i rICPWDa sdy ad s ,wh i chin c lud e sp e r fo rm ingcomp r eh en s iv ea s s e s sm en t sw i thth e c a r eg iv e r stoadd r e s sth e i rn e ed sandimp l em en t ingin t e rv en t ion sino rd e rtom e e tth e s e n e ed s(F am i lyC a r eg iv e rA l l i an c e ,2006 ;K a r l s sone ta l . ,2015 ;S ad avoy& W e s son ,2012 ) . Th eF am i lyC a r eg iv e rA l l i an c e(2006 )sugg e s t edth a tag lob a la s s e s sm en t ,gu id edbya con c ep tu a lf r am ewo rk ,shou ldb ep e r fo rm eda tth eb eg inn ingo fac a r eg iv ingjou rn eyand wh en ev e rt r an s i t ion so c cu rth roughth ec a r eg iv ingjou rn ey .I th a sb e enp ropo s edth a t c a r eg iv e ra s s e s sm en t sth a ta r econdu c t edu s ingw e l l d e s ign ed ,w e l l t e s t ed ,comp r eh en s iv e , ands t ru c tu r eda s s e s sm en ttoo l sbyPCP sm aycon t r ibu t etoth ep rov i s iono fcon s i s t en t , qu a l i tyh e a l thc a r efo rp a t i en t sandth e i rin fo rm a lc a r eg iv e r s(F am i lyC a r eg iv e rA l l i an c e , 40   2012 ) .Th eF am i lyC a r eg iv e rA l l i an c e(2012 )h a scomp i l edanex t en s iv el i s to ftoo l sth a t m ayb eu s edtoa s s e s sc a r eg iv e r s ;how ev e r ,D e ek ene ta l .(2009 )s t a t eth a ta l though num e rou stoo l sh av eb e end ev e lop ed ,f ewa r eac tu a l lyu s edinth ep r a c t i c es e t t ingtoa s s e s s th en e ed so fc a r eg iv e r s .Th i sm ay ,inp a r t ,b edu etoth el im i t ednumb e ro fsu i t ab l e , comp r eh en s iv etoo l sd ev e lop edsp e c i f i c a l lyfo ru s einth ep r im a ryc a r es e t t ing . Mo r eov e r , twotoo l sth a th av eb e end e s ign edandr e s e a r ch edtoadd r e s sth esp e c i f i candun iqu en e ed so f ICPWDa c tu a l lyh av enoev id en c esuppo r t ingth e i ru s einc l in i c a lp r a c t i c es e t t ing s(C z a j ae t a l . ,2009 ;K e e f ee ta l . ,2009 ) . Inadd i t iontoth el a cko fsu i t ab l ea s s e s sm en ttoo l sfo ru s einp r im a r yc a r es e t t ing s , p e r fo rm inganin d ep tha s s e s sm en ti sno tar e a l i s t i cex e r c i s einm anyp r im a ryc a r ep r a c t i c e s , a scomp l e t ingacomp r eh en s iv en e ed sa s s e s sm en ti smo r eth anmo s tPCP sp r e s en t lyh av eth e t im etop e r fo rm(R i ch ,L ip son ,L ib e r sky ,&P a r ch em an ,20 12 ) .Mo r eov e r ,i fth ein fo rm a l c a r eg iv e ri sno tap a t i en to fth ePCP(wh i chi so f t enth ec a s e ) ,th en th ePCPw i l lb eun ab l eto t r e a tth ec a r eg iv e ra ssu ch .Toadd r e s sth ech a l l eng e sth a tPCP sm ayf a c einth i sr eg a rd , app l i c ab l ec l in i c a lp r a c t i c egu id e l in e sandar epo r tbyth eF am i lyC a r eg iv e rA l l i an c e(2006 ) w i l lb ean a ly z edinCh ap t e rTh r e eands t r a t eg i e sfo ra s s e s sm en tw i l lb ed i s cu s s edinCh ap t e r Fou r . P rov id ing“Road s id eA s s i s tan c e” :In t e rv en t ion sandE th i ca lI s su e s B a rn a rdandY a f f e(2014 )s t a t eth a te th i c a li s su e sa r el ik e lytob ep r e s en tinm any in fo rm a lc a r eg iv e r / c a r er e c ip i en tc a s e s .A l thoughsuppo r t ingth ein fo rm a lc a r eg iv e ri so f c r i t i c a limpo r t an c e ,th ep a t i en t ’ sn e ed sandw i sh e smu s tb et ak enin toa c coun tbyth ePCP . Th i sc anl e adtod i f f i cu l tandcomp l exs i tu a t ion sfo rth ePCP .I fth ep a t i en tdo e sno tw i shto comm en c es e rv i c e ssu cha shom esuppo r t s ,y e tth ein fo rm a lc a r eg iv e rf e e l sth a tth e s e 41   s e rv i c e sa r en e ed ed ,howshou ldth ePCPb e s ts t ru c tu r eandimp l em en tar e spon s eand suppo r t iv ein t e rv en t ion s ?Th i squ e s t ionr a i s e sth etho rnyi s su eo fp a t e rn a l i smi fth ePCP f e e l sth a tth ep a t i en t ’ sw i sh e stor e fu s ehom esuppo r t sshou ldb eov e r r idd enfo rh i so rh e r b e s tin t e r e s t(B a rn a rd&Y a f f e ,2014 ) .Th ePCP ’ sob l ig a t ion sr e l a t edtocon f id en t i a l i tymu s t a l sob et ak enin toa c coun ti fth ePCPf e e l sth a ti ti simpo r t an ttoh av ead i s cu s s ionw i thth e c a r eg iv e rr eg a rd ingsuppo r t ,y e tth ep a t i en tdo e sno tw i shth ePCPtoeng ag einsu cha d i s cu s s ion . B a rn a rdandY a f f e(2014 )sugg e s tth a tv i ew ingth i styp eo fqu es t ionth roughth el en s o fc a r eg iv e rbu rd enc anb ee s s en t i a lind ev e lop inganund e r s t and ingo fbo thth epo s i t iv e a sp e c t so fc a r eg iv ingandi t sa s so c i a t edch a l l eng e s .A l thoughth ep a t i en t ’ sau tonomyshou ld a lw ay sb er e sp e c t edbyth ePCP ,i th a sb e ensugg e s t edinth el i t e r a tu r eth a ti ti sapp rop r i a t e fo rth ePCPtosuppo r tICPWDi fi ts e rv e stob en e f i tbo thth ec a r eg iv e randc a r er e c ip i en t (B a rn a rd&Y a f f e ,2014 ) . Mo r eov e r ,B a rn a rdandY a f f e(2014 )po s i tth a ti ti se th i c a l ly r e spon s ib l efo rPCP stosu ppo r tin fo rm a lc a r eg iv e r sinp rov id ingc a r efo rth e s ep a t i en t sand toadvo c a t efo rtho s eso c i a lpo l i c i e sth a tm ayimp rov eth el iv e so fin fo rm a lc a r eg iv e r s . Th en eg a t iv eimp a c tth a tc a r eg iv ingc anh av eonICPWDh a sp rop ag a t eds ign i f i c an t in t e r e s tinth eh e a l thc a r ea r en a .Th i sh a sl e adtoanin c r e a s ing lyfo cu s ede f fo r ton condu c t ingr e s e a r chth a th a sex am in edsuppo r t iv ein t e rv en t ion sfo rICPWD(B e l l ee ta l . , 2006 ) .E t t e r s ,Good a l landH a r r i son(2007 ) ,a sw e l la sT r emon t(2011 ) ,s t a t edth a t ,w i thth e imp l em e n t a t iono fjud i c iou s lyd e s ign edin t e rv en t ion s ,th ew e l l b e ingandh e a l tho fbo th p a t i en tandc a r eg iv e rc anv e ryo f t enimp rov e .How ev e r ,i tmu s tb eemph a s i z edth a tsu ch in t e rv en t ion smu s tb es e l e c t edandimp l em en t eda c co rd ingtoc a r eg iv e r s ’sp e c i f i cn e ed s ( D ah lb e rg ,D em a ck ,&B amb r a ,2007 ;E t t e r se ta l . ,2008 ) . 42   Wh i l easy s t em a t i cr ev i ewo fth eimp a c to fp sy cho so c i a lin t e rv en t ion sfound ev id en c esuppo r t ingth eimp rov em en to fICPWD ’ sw e l l b e ingth roughth eu s eo fbo thg roup andind iv idu a ls e s s ion s ,ind iv idu a ls e s s ion sd emon s t r a t edg r e a t e re f f i c a cyfo rmo r eo fth e c a r eg iv e r s(Ro s ae ta l . ,2010 ) .In t e r e s t ing ly ,anex am in a t iono ff i f t e ensy s t em a t i cr ev i ew sby S a l f ie ta l .(2005 )foundth a tsuppo r tg roup s ,r e sp i t e ,coun s e l ing ,andedu c a t ions e s s ion s ,a l l o fwh i cha r ein t e rv en t ion sth a tm ays imp lyb ea s sum edtob eh e lp fu ltoin fo rm a lc a r eg iv e r s , d idno ta c tu a l lyl e adtoanimp rov em en tinr epo r t so fin fo rm a lc a r eg iv e rbu rd en .Th i si s impo r t an tb e c au s e ,a sno t edp r ev iou s ly ,ah igh e rd eg r e eo fp e r c e iv edbu rd enonth ep a r to f th ec a r eg iv e rc ann eg a t iv e lyimp a c tc a r eg iv e rw e l l b e ing . M anys tud i edin t e rv en t ion sh av ep rov entob eb en e f i c i a lfo rin fo rm a lc a r eg iv e r s .Fo r ex amp l e ,s tud i e sth a tex am in edyog aandm ind fu ln e s st r a in ingfo rICPWDr ev e a l edth a t d a i lym ed i t a t iv es e s s ion simp rov eds t r e s sl ev e l s(B l a cke ta l . ,2013 ;Hu r l ey ,P a t t e r son& Coo l ey ,2014 ;J a in ,N a z a r i an ,&L av r e t sky ,2014 ;Ok ene ta l . ,2010 ;W a e ld e ,Thomp son ,& G a l l agh e rThomp son ,2004 ) ,cogn i t iv efun c t ion(W a e ld ee ta l . ,2004 ) ,m en t a lh e a l th ,and d e c r e a s edd ep r e s s ionl ev e l s(Hu r l eye ta l . ,2014 ;L av e t r skye ta l . ,2013 ;W a e ld ee ta l . ,2004 ) . S a l f ie ta l .(2005 )foundth a tat e l ephon ein t e rv en t ion ,inwh i chah e a l thc a r ep ro f e s s ion a l p rov id edsuppo r ttoICPWDov e rth et e l ephon e ,p rov id edb en e f i c i a lemo t ion a ls uppo r tand edu c a t ion .T e l ephon ein t e rv en t ion sm ayb ep a r t i cu l a r lyu s e fu lfo rtho s ec a r eg iv e r swho r e s id einru r a lo rr emo t ea r e a sw i thl im i t edav a i l ab l es e rv i c e s( G lu e ck au fe ta l . ,2007 ) . On l in ein t e rv en t ion sm aya l sop rov es im i l a r lyu s e fu lfo rind iv idu a l sr e s id inginru r a lo r r emo t ea r e a s .As tudybyG l eu ck au fandLoom i s(2003 )foundth a tanon l in esuppo r t p rog r amimp rov edbo thc a r eg iv e rsub j e c t iv ebu rd enandth e i rl ev e lo fs e l f e f f i c a cy . P sy cho so c i a lsuppo r tp rog r am sth a to f f e rs e rv i c e ssu cha ssuppo r tg roup s ,edu c a t ion ,and 43   coun s e l ing ,h av ep rov enu s e fu lind e l ay ingin s t i tu t ion a l i z a t iono fc a r er e c ip i en t sw i th d em en t i a(D rö e s ,M e i l and ,S chm i t z ,&v anT i lbu rg ,2006 )andd e c r e a s ingd ep r e s s ionin ICPWD(Chue ta l . ,2011 ) . D e sp i t eth eb en e f i t sr epo r t edinsom es tud i e s ,i ti simpo r t an ttor e cogn i z eth a t b a r r i e r stosu c c e s s fu limp l em en t a t iono fin t e rv en t ion sdo ,un fo r tun a t e ly ,ex i s t .Su ch po t en t i a lb a r r i e r sin c lud et r an spo r t a t ioni s su e s ,l a cko ff am i l i a lsuppo r t ,in su f f i c i en t know l edg eo fav a i l ab l ein t e rv en t ion sbyPCP s ,a sw e l la scu l tu r a landso c io e conom i cf a c to r s th a tm ayl im i ta c c e s s ib i l i tytosu chs e rv i c e sandth e r ebyd e c r e a s ep a r t i c ip a t ionbysom e c a r eg iv e r s(C z a j ae ta l . ,2013 ) .Fu r th e rmo r e ,th en e c e s s a rytyp e so fin t e rv en t ion sa r eno t a lw ay scon s id e r edf o rimp l em en t a t ionbyPCP sandm ayno tev enb eav a i l ab l einm any commun i t i e s .Fo rtho s ep a t i en t sw i thd em en t i aandth e i rin fo rm a lc a r eg iv e r swhodoh av e a c c e s stoaPCP ,p r im a ryc a r e b a s edin t e rv en t ion sm ayh e lptoe l im in a t esom eo fth e s e id en t i f i edb a r r i e r sandimp rov esuppo r ts e rv i c ea c c e s sandup t ak e ;how ev e r ,r e s e a r chon in t e rv en t ion simp l em en t edw i th inp r im a ryc a r es e t t ing si ssu rp r i s ing lys c a r c e(Bu rn se ta l . , 2003 ) .Th i sl a cko fr e s e a r chm ay,inp a r t ,b er e l a t edtot im econ s t r a in t so fc l in i cv i s i t s ,l a ck o fPCPknow l edg eo fr e sou r c e so rqu a l i tyd em en t i ac a r e ,l a cko ff in an c i a lr e imbu r s em en t (B ro tm an&Y a f f e ,1994 ) ,o rp e r c e iv edun r e a l i s t i cexp e c t a t ion so fin fo rm a lc a r eg iv e r s . Th epu rpo s eo fth i sl i t e r a tu r er ev i ewi stoex am in eth esp e c i f i cw ay sinwh i chPCP s c anb e s tsuppo r tICPWD .Ink e ep ingw i thap e r son c en t r edapp ro a chtoc a r eg iv e rc a r efo r ICPWD ,Ch ap t e rTh r e ew i l lexp lo r eexp e r i en c e sandr epo r t edn e ed so fICPWD ,a sw e l la s p r im a ryc a r e b a s eda s s e s sm en tandin t e rv en t ion s ,w i thth ea imo fd ev e lop ingfu r th e r know l edg eandr e comm end a t ion sinwh i chtogu id eth ep r a c t i c eo fPCP sinth ep r im a ryc a r e s e t t ing . 44   Chap t e r2 :S ea r ch M e thod     Th ein t en to fth i sl i t e r a tu r er ev i ewi stod e t e rm in eth ew ay sinwh i chPCP sc an f a c i l i t a t ead ap t a t ionandw e l l b e inginICPWD .M e thodo log i c a ls t r a t eg i e sd ev e lop edby Wh i t t emo r eandKn a f l(2005 )w e r eimp l em en t edino rd e rtos t r eng th enth er igou ro fth e r ev i ewp ro c e s sandtoe f f e c t iv e lyan sw e rth er e s e a r chqu e s t ion .Th eu s eo f Wh i t t emo r eand Kn a f l ’ smod i f i edr ev i ewf r am ewo rkw a ssp e c i f i c a l lycho s ena si ta f fo rd sg r e a t e rr igou rw i th th eu s eo fd i sp a r a t er e s e a r chm e thod s ,a sw e l la sw i thbo themp i r i c a landth eo r e t i c a l l i t e r a tu r e(Wh i t t emo r e&Kn a f l ,2005 ) .Th ef i r s tp a r to fth es e a r chs t r a t egyfo rth i sp ro j e c t in c lud edth ed ev e lopm en to fas e a r chp l an .Aw r i t t ent ab l ew a sc r e a t edinwh i chtot r a ck e a chs e a r chandth esub s equ en tnumb e ro fr e su l t sfo re a cho fth es e a r ch e s .Endno t eB a s i c w a su t i l i z eda sth er e f e r en c em an ag em en tp rog r amtot r a ckando rg an i z etho s er e f e r en c e s th a tw e r eapp l i c ab l etoth er e s e a r chtop i c . D a t ab a s e sw e r ea c c e s s edth roughth eUNBCl ib r a ryw ebp ag eandF r a s e rH e a l th l ib r a ryw ebp ag eino rd e rtoob t a injou rn a la r t i c l ec i t a t ion s .Th e s er e sou r c e sa l low edth e s e a r chfo ra r t i c l e su s ingCumu l a t iv eInd exo fNu r s ingandA l l i edH e a l thL i t e r a tu r e (C INAHL )Comp l e t e ,Ov id M ed l in e ,P sy chIn fo ,A c ad em i cS e a r chComp l e t e ,So c i a l S c i en c e sAb s t r a c t s ,andB iom ed i c a lR e f e r en c eCo l l e c t ion :Comp r eh en s iv e .V a r iou styp e so f l i t e r a tu r ew e r econ s id e r edfo rth i sr ev i ew :qu a l i t a t iv e ,qu an t i t a t iv eo rm ix ed m e thods tud i e s , sy s t em a t i cr ev i ew s ,n a r r a t iv er ev i ew s ,in t eg r a t iv er ev i ew s ,c l in i c a lp r a c t i c egu id e l in e s , ed i to r i a l s ,andg r eyl i t e r a tu r esu cha sr epo r t sandcon f e r en c ep ro c e ed ing s . Tob eg in ,th efo l low ing M ed i c a lSub j e c tH e ad ing s(M eSH )h e ad ing sr e l a t edtomy qu e s t ionw e r eu s ed :d em en t ia ,ca r eg i v ing ,ca r eg i v e r ,ca r e r ,in fo rma lca r eg i v e r ,adap ta t ion , t ran s i t ion s ,p r ima r yca r e ,p r ima r yca r ep ro v id e r ,nu r s ep ra c t i t ion e r ,ca r eg i v e rn e ed s , 45   a s s e s sm en t ,andin t e r v en t ion sino rd e rtoexp lo r ewh a ttyp e so fa r t i c l e swou ldr e su l t .Th eu s e o fth e s eb ro adh e ad ing sr e su l t edinthou s and so fa r t i c l e s .Byu s ingth eBoo l e anop e r a to r ‘ and ’ino rd e rtom a r ryt e rm ssu cha sadap ta t ion‘ and ’ca r eg i v e r s‘ and ’d em en t iao r d em en t ia‘ and ’ca r eg i v e r‘ and ’p r ima r yh ea l thca r e‘ and ’in t e r v en t ion s ,th efo cu so fth e s e a r ch e sw a sn a r row edandth i sr e su l t edinmo r er e l ev an tc i t a t ion s . Th es e a r chfo ra r t i c l e sa l soin co rpo r a t edth eu s eo fGoog l eS cho l a r ,T r ipD a t ab a s e( a c l in i c a ls e a r cheng in econ t a in ingh ighqu a l i tyev id en c e b a s edl i t e r a tu r e ) ,andth eAg en cyfo r H e a l thC a r eR e s e a r chandQu a l i tyw eb s i t e ,a si tcon t r ibu t e sbo thr e s e a r chsyn th e s e sand o r ig in a lr e s e a r cha r t i c l e s .On c eth e s ed a t ab a s es e a r ch e sw e r eexh au s t ed ,andino rd e rto comp l e t eacomp r eh en s iv es e a r ch ,g r eyl i t e r a tu r ew a sex am in eda sw e l lu s ingth eN ewYo rk A c ad emyo fM ed i c in eG r eyL i t e r a tu r eR epo r t .Th eIn s t i tu t eo fH e a lthE conom i c sw eb s i t e andth e Wo r ld W id eW ebs e a r cheng in e sw e r ea l soexp lo r ed .D a t ab a s eandg r eyl i t e r a tu r e s e a r ch e sw e r ea l lcondu c t edv i aon l in em e ch an i sm s . In c lu s ionandEx c lu s ionC r i t e r iafo rL i t e ra tu r eCon s id e ra t ion S in c eth er e s e a r chqu e s t ioni squ it eb ro adw i thr e sp e c ttoth ew ay sinwh i chPCP s m ayf a c i l i t a t ead ap t a t ionandw e l lb e inginc a r eg iv e r s ,m anytyp e so fa r t i c l e sa ro s eou to f th ein i t i a ls e a r chandw e r ein i t i a l lyin c lud edinth er e su l t s .Fo rex amp l e ,anyemp i r i c a l s tud i e sth a tex am in edin t e rv en t ion sr e l a t edtoICPWDw e r ein c lud ed ,a sw e r enon exp e r im en t a la r t i c l e sp e r t a in ingtobu rd en ,r i skf a c to r sfo rbu rd en ,s e rv i c eu t i l i z a t ion , r e l a t ion sh ip sb e tw e enc a r eg iv e r sandp r im a ryc a r ep rov id e r s ,andc a r eg iv e r ’ sexp e r i en c e sin th econ t ex to fd em en t i a .Qu a l i t a t iv es tud i e sw e r ea l soin c lud edth a tex am in edth en e ed so r exp e r i en c e so fc a r eg iv e r sp rov id ingc a r efo rind iv idu a l sw i thd em en t i a ,inth ein t e r e s to f g a in inganund e r s t and ingo fth ec a r eg iv ingjou rn eyinth econ t ex to fd em en t i a .Th ehop ew a s 46   th a tth ein c lu s iono fqu a l i t a t iv ed a t awou ldaddd ep thtoth eov e r a l lr ev i ewth a tex am in ing qu an t i t a t iv ed a t aon lywou ldno ta f fo rd .Fu r th e r ,th eadd i t iono fqu a l i t a t iv es tud i e sp rov id ed in s igh tin totho s en e ed sth a tPCP sn e edtoadd r e s sino rd e rtoe f f e c t iv e lyf a c i l i t a t ead ap t a t ion andw e l l b e inginICPWD .How ev e r ,du etoamy r i ado fl i t e r a tu r efounddu r ingth es e a r ch , th ein c lu s ionc r i t e r i aw e r esub s equ en t lyn a r row edtoin c lud eon lyc a r eg iv e rn e ed s , exp e r i en c e s ,a s s e s sm en t ,andp r im a ryc a r e b a s edin t e rv en t i on sth a tcou ldb ep e r fo rm edby PCP so ro th e rm emb e r so fanin t e rd i s c ip l in a ryp r im a ryc a r et e aminco l l abo r a t ionw i th PCP s .Anys tud i e sth a tex am in edp r im a ryc a r eb a s edsuppo r t iv e ,p sy cho so c i a l ,edu c a t ion a l , o rmu l t i compon en tin t e rv en t ion sa im eda timp rov i ngICPWD ’ sw e l lb e ingo rad ap t a t ionto th ec a r eg iv ingro l ew e r ein c lud ed .O th e rin c lu s ionc r i t e r i afo rth es e l e c t eda r t i c l e sfo rth i s l i t e r a tu r er ev i ewin c lud edafo cu sonunp a ido rICPWD ,su cha saspou s e ,ch i ld ,o th e rf am i ly m emb e r ,f r i end ,o rn e ighbou r ,i r r e sp e c t iv eo fag e ,e thn i c i ty ,l ev e lo fedu c a t ion ,o c cup a t ion , o rg end e r . S tud i e sin c lud edinth i sl i t e r a tu r er ev i eww e r er equ i r edtoh av eb e enp e e rr ev i ew ed . In c lud eds tud i e sa l son e ed edtoh av eb e enw r i t t eno rt r an s l a t edin toEng l i shino rd e rto en su r ecomp r eh en s iono fth ewo rk .S tud i e sw e r econ s id e r edfo rin c lu s ioni fth ein t end ed v a r i ab l eou t com e sw e r er e l a t edtoICPWD ,in c lud ing :d ep r e s s iv esymp tom s ,anx i e ty ,s t r e s s , bu rd en ,s t r a in ,c a r eg iv e rad ap t a t ion ,cop ing ,know l edg e ,so c i a lsuppo r t ,o rw e l l b e ing . S tud i e sfo cu s ingonou t com e s ,su cha sd e l ay ednu r s inghom eadm i s s iono ravo id an c eo f ho sp i t a ladm i s s ion so fth ec a r er e c ip i en t ,w e r ea l soin c lud edinth er ev i ew . Asumm a ryl i s to fin c lu s ionandex c lu s ionc r i t e r i ai sp rov id edinT ab l e1 . 47   T ab l e1 .Inc lu s ionandEx c lu s ionC r i t e r i a In c lu s ionC r i t e r ia : Qu a l i t a t iv e ,qu an t i t a t iv e ,o rm ix edm e thods tud i e s Sy s t em a t i cr ev i ew s ,m e t aan a ly s e s ,in t eg r a t iv er ev i ew s ,n a r r a t iv er ev i ew s Ed i to r i a l s ,r epo r t s C l in i c a lp r a c t i c egu id e l in e s ICPWDo fanyag e ,g end e r ,e thn i c i ty ,so c io d emog r aph i cp ro f i l e P r im a ryc a r eb a s edin t e rv en t ion so ra s s e s sm en tinvo lv ingICPWD N e ed so rexp e r i en c e so fICPWD S tud i e sw r i t t eno rt r an s l a t edin toEng l i sh S tud i e sf romanycoun t ry Anyd a t eo fpub l i c a t ion P e e rr ev i ew eda r t i c l e s E x c lu s ionC r i t e r ia : Ab s t r a c t s ,s tudyp ro to co l s ,d i s s e r t a t ion s A cu t ec a r eb a s eds tud i e s S tudyw r i t t enon lyinal angu ag eo th e rth anEng l i sh S tud i e sinvo lv ingon lyp a ido rfo rm a lc a r eg iv e r s In fo rm a lc a r eg iv e rin t e rv en t ion so ra s s e s sm en t sth a tw e r eno tp r im a ryc a r e b a sed In fo rm a lc a r eg iv e rin t e rv en t ion so ra s s e s sm en t sth a tcou ldno tb ep e r fo rm edd i r e c t lyby , o rinco l l abo r a t ionw i th ,aPCP C a r eg iv e r so fp a t i en t sw i thd i s e a s ep ro c e s s e so th e rth and em en t i a R e su l t sandS e l e c t iono fA r t i c l e sfo rR ev i ew Th ecomp l e t el i t e r a tu r es e a r chr e su l t edinato t a lo f5 ,369a r t i c l e so rgu id e l in e s .A f t e r 812dup l i c a t e sw e r ed e l e t ed ,4 ,557t i t l e sand /o rab s t r a c t sr em a in edfo rr ev i ew .Upon comp l e t iono fab r i e fr ev i ewo fth e s ea r t i c l e sanda f t e rth eapp l i c a t iono fin c lu s ionand ex c lu s ionc r i t e r i a ,4 ,245w e r eex c lud edl e av ing312a r t i c l e sfo rfu l lr ev i ew .A f t e rt h e s e a r t i c l e sw e r er ev i ew ed ,282w e r ed i s c a rd edfo rr e a son ssu cha sfo cu s ingonth en e ed so r exp e r i en c e so fth ec a r er e c ip i en tr a th e rth anth ec a r eg iv e r ,no tb e in gr e l a t edtop r im a ryc a r e , o rin t e rv en t ion sno tb e ingad m in i s t e r edbyaPCP .Ov e r a l l ,30ind iv idu a ls tud i e s ,sy s t em a t i c   48 r ev i ew s ,r epo r t s ,andc l in i c a lp r a c t i c egu id e l in e sw e r efoundtob esu i t ab l efo rin c lu s ionin th i sr ev i ew .S e eApp end ixEfo rad i ag r amo fth el i t e r a tu r es e a r chs t r a t egy . 49   Chap t e r3 :F ind ing s Inth i sch ap t e r ,qu a l i t a t iv el i t e r a tu r ew i l lb eexp lo r edf i r s tino rd e rtog a inan und e r s t and ingo fth eexp e r i en c e sandn e ed so fICPWD .N ex t ,th eev id en c ep e r t a in ingto p r im a ryc a r eb a s edc a r eg iv e rin t e rv en t ion sw i l lb eex am in edino rd e rtoh e lptod e t e rm i n e howe f f e c t iv eth e s ein t e rv en t ion sa r ea timp rov ingth ec a r eg iv ingjou rn eyfo rICPWD . F in a l ly ,c l in i c a lp r a c t i c egu id e l in e sw i l lb eexp lo r edtoinv e s t ig a t ecu r r en tp r a c t i c e r e comm end a t ion sinwh i chtop rov id esuppo r ttoin fo rm a lc a r eg iv e r s .Th es e a r chm ethod ou t l in edinCh ap t e rTwop rodu c ed30a r t i c l e sth a tm e ta l lo fth es e a r chc r i t e r i aandthu sw e r e in c lud edinth el i t e r a tu r er ev i ew . Th eCa r eg iv e rJou rn ey :F romth eB eg inn ingtoth eEnd L i t e r a tu r ew a sexp lo r edth a tp e r t a in edtoc a r eg iv e rexp e r i en c e sandn e ed sino rd e rto p rov id ein s igh tin tobo thth ech a l l eng e sandth epo s i t iv ea sp e c t sa s so c i a t edw i thc a r eg iv ing . H av ingaw a r en e s so fth e s eexp e r i en c e sind i f f e r en ts t ag e so fd em en t i am ayh e lptop romo t e w ay stob e s tsuppo r tICPWD .G a lv in ,Tod r e s ,andR i ch a rd son(2005 )s t a t eth a t“ th i s ‘ in s id e r ’v i ewi sab l etof a c i l i t a t eemp a th i cund e r s t and ingino th e r sandthu sempow e ra d e ep e rl ev e lo fp a t i en t c en t r edc a r e ”(p .9 ) . Pu l l ingou to fth ed r iv eway :Th eb eg inn ingo fth ejou rn ey .Twos tud i e sinth i s r ev i ewd e s c r ib edth eexp e r i en c e so fICPWDinth ee a r lys t ag e so fd em en t i a .Inth ef i r s t s tudy ,T e e landC a r son(2003 )u s edaqu a l i t a t iv eapp ro a chtoexp lo r eth eexp e r i en c e so f ICPWDwhosough td i agno s i s ,c a r e ,andt r e a tm en tbyPCP s .Fou r t e enin fo rm a lc a r eg iv e r s b e tw e en45and83y e a r so fag ew e r er e c ru i t edf rom11sm a l lu rb ano rru r a lcommun i t i e s a c ro s sK an s a s ,USA .P a r t i c ip an t sund e rw en ts em i s t ru c tu r edin t e rv i ew sl a s t ing app rox im a t e lyon ehou re a ch . 50   W i thr e sp e c ttoob t a in ingad i agno s i s ,mo s to fth ec a r eg iv e r sinth eT e e landC a r son (2003 )s tudyr epo r t edh av ingb e entos ev e r a lsp e c i a l i s t sandPCP sb e fo r ead i agno s i sw a s a c tu a l lym ad e ,du etoar e lu c t an c eo fth e i rPCPtom ak ead e f in i t iv ed i agno s i s .Fo l low ingth e in i t i a lch a l l eng e so fob t a in ingad i agno s i s ,m anyc a r e g iv e r sf e l tth a tth e i rPCP sl a ck ed exp e r t i s einsuppo r t ingbo thin fo rm a lc a r eg iv e r sandth ec a r er e c ip i en t s .Th eh e s i t a t ionby PCP stod i agno s ed em en t i ad emon s t r a t e showd i f f i cu l ti ti sf romth ePCP s’p e r sp e c t iv eto in fo rmth ep a t i en tandICPWDabou tsu chal i f e ch ang ingd i agno s i s .PCP sm ayno td i agno s e d em en t i afo rs ev e r a lo th e rr e a son s ,in c lud ing :al a cko ft r a in ingind em en t i ac a r e ;al a cko f know l edg eabou tr e sou r c e sinwh i chtop rov id eon c ead i agno s i si sm ad e ;symp tom sm ay no tb eno t i c eddu r ingo f f i c ev i s i t s ;andth eym ayno tw i shtod i s c lo s ead i agno s i sth a tw i l l c au s ed i s t r e s stot h e i rp a t i en tand /o rin fo rm a lc a r eg iv e r(A l zh e im e rSo c i e tyo fB r i t i sh Co lumb i a ,2012 ) . No ton lyisth ed i agno s i so fd em en t i aad i f f i cu l ton etoab so rbbu ts tudyp a r t i c ip an t s a l sod e s c r ib edc au s e so fs t r e s sa r i s ingf roma s so c i a t edf in an c i a l ,phy s i c a l ,ande mo t ion a l f a c to r s .Th eco s to fm ed i c a t ion s ,fo rm a lsuppo r t iv es e rv i c e s ,andr e s id en t i a lc a r ea r enow th ing sth a tth ec a r eg iv e rn e ed stoth inkabou twh en ,p e rh ap s ,th i sh adno tp r ev iou s lyev en b e enp a r to fth e i rthough tp ro c e s s e s .Th es tudyp a r t i c ip an t sd e s c r ib edun c e r t a in tyandf e a r abou twh a tth efu tu r eh e ldfo rth em s e lv e sandth ec a r er e c ip i en t . As en s eo flon e l in e s sandl a cko fsuppo r tf romo th e rf am i lym emb e r sandPCP sw e r e p rom in en tth em e sinth es tudy .Al a cko fedu c a t ionp rov id edtoth ec a r eg iv e r sbyPCP sw i th r e sp e c ttoa sp e c t so fc a r eg iv ing ,su cha sp rov id ingp e r son a lc a r e ,w a sano t edf ru s t r a t ion . On ec a r eg iv e rs t a t edth a t“ th eys aynobodyc anp r ep a r eyoufo ri t .W e l l ,Ith inkth eyc an ” (T e e l&C a r son ,2003 ,p .49 ) .A l thoughc a r eg iv e r sf e l tal a cko fsuppo r tf romPCP sinth i s 51   r eg a rd ,mo s ts tudyp a r t i c ip an t sr epo r t edth a ta t t end ingsuppo r tg roup sh e lp edtom e e ttho s e p a r t i cu l a rl e a rn ingn e ed s .No tsu rp r i s ing ly ,wh ena sk edwh a tth eyw an t edPCP stoknow ov e r a l labou tth e i rexp e r i en c e sa sf am i lyc a r eg iv e r s ,th es tudyp a r t i c ip an t scon s i s t en t ly r epo r t edth e i rd e s i r etof e e lsuppo r t edbyPCP s .Ov e r a l l ,th eexp e r i en c e so fth eICPWDin T e e landC a r son ’ s(2003 )s tudysugg e s tth a tPCP sn e edtob eaw a r eo fth epo t en t i a ls t r e s so r s th a tICPWDm ayf a c edu r ingth e i rc a r eg iv ingjou rn eyandb eop entoh e a r ingabou t ICPWD ’ sexp e r i en c e s . A l thoughth ef ind ingth a tICPWDf e l tth a tth e i rl e a rn ingn e ed sw e r em e tth rough suppo r tg roup s ,r a th e rth anth roughth e i rPCP ,w a scon s i s t en ta c ro s ss tudyp a r t i c ip an t s ,th e au tho r ss t a t edth a tth ep a r t i c ip an t sw e r er e c ru i t edth roughsuppo r tg roup sandth a tth i s p a r t i cu l a rf ind ingshou ldth e r e fo r eb ein t e rp r e t edw i thc au t ion .Th e r e fo r e ,ano t ab l e l im i t a t iono fth es tudyw a sth eund e r r ep r e s en t a t iono fc a r eg iv e r swhod idno ta t t endsuppo r t g roup s(T e e l&C a r son ,2003 ) .Ano th e rl im i t a t iono fth es tudyw a sth ehomog enou ss tudy s amp l ea sa l lo fth es tudyp a r t i c ip an t sw e r eC au c a s i anandth em a jo r i ty( 64%)w e r ef em a l e . A l thoughth i sm ayb ear ep r e s en t a t iv es amp l eo fth ec a r eg iv ingpopu l a t ioninKan s a s ,th e f ind ing sm ayno tb eg en e r a l i z ab l etomo r emu l t i cu l tu r a lcommun i t i e s . Inth es e conds tudy ,Ad am s(2006 )u t i l i z edaph enom eno log i c a lapp ro a chand g round edth eo rym e thodo logytoexp lo r eth eexp e r i en c e so fICPWDdu r ingth ee a r lys t ag e s o fd em en t i aandhowth eyad ju s t edtoth en ewc a r eg iv ingro l e .Tw en tyspou s eo radu l tch i ld ICPWDw e r er e c ru i t edth roughth eUn iv e r s i ty M emo ryandAg ingC en t r einC l ev e l and , Oh io ,USAandund e rw en tind ep thin t e rv i ew sl a s t ingon ehou re a ch .S ev e r a lth em e sand sub th em e sw e r eev id en tinth es tudyf ind ing s .Th ef i r s tth em e ,‘ f am i lym emb e rt a sk s ’ , invo lv edth ec a r eg iv e rt ak ingonn ewro l e sandt a sk sth a tth ec a r er e c ip i en tcou ldnolong e r 52   p e r fo rmands t rugg l ingw i thth ed e c i s iono fhowmu chtoa l lowth en ew lyd i agno s edp e rson todo ,su cha sp ay ingb i l l s ,m an ag ingth e i rownm ed i c a t ion ,o rd r iv ingac a r . Th es e condth em einth eAd am s(2006 )s tudyinvo lv ed‘ ch ang e sinth er e l a t ion sh ip ’ (p ro t e c t iv en e s sandcon c e rn ,lo s so fcon f id an t ) .S ev e r a lo fth es tudyp a r t i c ip an t sd e s c r ib e d howth eyt r i edtom a in t a inin t im a cyanda sp e c t so fth e i rr e l a t ion sh ipth a tth eyh ada lw ay s v a lu ed ,su cha shumou r ;how ev e r ,th ec a r eg iv e r sr epo r t edexp e r i en c ingf e e l ing so flo s sa s th ec a r er e c ip i en t ’ scogn i t iond e t e r io r a t ed . Th eth i rdp rom in en tth em einth i ss am es tudyadd r e s s edn eg a t iv eemo t ion s .Ad am s (2006 )s t a t edth a t19ou to f20s tudyp a r t i c ip an t sr epo r t edh av ingexp e r i en c edn eg a t iv e imp a c tf romc a r eg iv ing .Th ec a r eg iv e r sexp r e s s edf e e l ing so fang e r ,f ru s t r a t ion ,and imp a t i en c etow a rd sth ec a r er e c ip i en tandsom er epo r t edf e e l ing so fr e s en tm en t . Suppo r tf romo th e r s( in fo rm a landfo rm a l )w a sth efou r thth em e .C a r eg iv e r svo i c ed f e e l ingso c i a l lyi so l a t eddu etoth ef e a ro fs t igm ao rbu rd en ingo th e r s .M anyc a r eg iv e r s r epo r t edf e e l ingh e s i t an ttoa c c e s sfo rm a lsuppo r tdu etof e e l ing so fgu i l to rf e e l ingth a tth ey w e r et ak ingaw ayth ec a r er e c ip i en t ’ sind ep end en c e . Th el a s tth em efoundinth es tudyw a sth a to f‘ though t so fth efu tu r e ’ ;i tinvo lv ed f e e l ing so fun c e r t a in tym ix edw i thhop eth a tth ec a r er e c ip i en twou ldno td e t e r io r a t equ i ck ly (Ad am s ,2006 ) . As t r eng tho fth i ss tudyw a sth einvo lv em en to fm a l ec a r eg iv e r sino rd e rtog a inth e i r p e r sp e c t iv ea sp a r t i c ip an t sinmo s tc a r eg iv ings tud i e sa r ep r edom in an t lyf em a l e ;how ev e r , th esm a l l ,p r im a r i lyC au c a s i ans amp l ea l lpu l l edf romas ing l eg eog r aph i c a la r e am ay p r ev en tb ro ad e rg en e r a l i z ab i l i tyo fth ef ind ing s . 53   Onth eroad :Th ejou rn eycon t inu e sth roughth em idd l es tag e s .O ’Sh aughn e s sy , L e e ,andL in t e rn(2010 )condu c t edaph enom eno log i c a lqu a l i t a t iv es tudytoinv e s t ig a t eth e c a r eg iv ingexp e r i en c e sandp e r c e iv edm e an ing sth a tspou s ec a r eg iv e r sg av etoth e s e exp e r i en c e s .Th i ss tudycon s i s t edo fs ev enin fo rm a lspou s ec a r eg iv e r s( f iv ew iv e sandtwo hu sb and s ,a l lov e rth eag eo f59 )whow e r ep rov id ingc a r efo rap e r soninth em id s t ag e so f d em en t i a .Th e s es tudyp a r t i c ip an t sw e r er e c ru i t edf romA l zh e im e r ’ sSo c i e t i e sinth eUn i t ed K ingdom .E a chp a r t i c ip an tw a sin t e rv i ew edind ep end en t lyw i the a chin t e rv i ewl a s t ing45to 75m inu t e s . Th ef ind ing so fth eO ’Sh aughn e ssye ta l .(2010 )s tudyr e su l t edinfou rov e r a r ch ing th em e s .Th ef i r s tth em ew a sconn e c t edn e s sands ep a r a t en e s s ;spou s e ss t a t edth a tth eys t i l l f e l tconn e c t edtoth ec a r er e c ip i en tinsom ew ay s ,y e tf e l tacon cu r r en ts ep a r a t ionf romth e p e r sona sth ed em en t i ap rog r e s s ed .Th es e condth em ein c lud edt en s ionb e tw e enm e e t ingth e n e ed so fth ec a r er e c ip i en twh i l es t i l lm e e t ingth e i rownn e ed s .Th ec a r eg iv e r sinth es tudy r epo r t edf e e l inggu i l tyandov e rwh e lm edw i thth ec a r eg iv ings i tu a t ion .On ec a r eg iv e r r epo r t edf e e l inga si fh e rn e ed sw e r en ev e rm e t ,in c lud ingth er equ i r em en t so fh e rown h e a l thcond i t ion s .Th eth i rdth em einvo lv edc a r eg iv e r ’ sun c e r t a in tyabou tth efu tu r ea s c a r eg iv e r sr epo r t edo s c i l l a t ingb e tw e ena c c ep t an c eabou twh a tw a stocom eandun c e r t a in ty abou tth efu tu r e .Th efou r thth em einvo lv edan e edtom a in t a incon t ro linth e i rl iv e sand imp l em en te f f e c t iv ecop ings t r a t eg i e s . L i l lye ta l .(2012 )condu c t edaqu a l i t a t iv ed e s c r ip t iv es tudyth a ttookp l a c einth r e e commun i t i e sinth eSou th e rnIn t e r io ro fB r i t i shCo lumb i a .Tw en tyth r e eind iv idu a l sw e r e r e c ru i t edfo rth es tudy ,in c lud ingICPWD ,p e e rsuppo r tvo lun t e e r s ,andPCP swhosuppo r t ed ICPWDa sap a r to fth e i rro l e( so c i a lwo rk e r s ,fo rex amp l e ) .Th es tudyp a r t i c ip an t stookp a r t 54   inth r e efo cu sg roup s .T h ep a r t i c ip an t sw e r ep r im a r i lywom en(n=20 )ande ld e r ly ,l iv ingin e i th e rsm a l lu rb ana r e a s(21 )o rru r a la r e a s(n=2 ) . An a ly s i so fth ef ind ing sr e su l t edintwoth em e s :1 )ICPWDf e e l ingfo rgo t t en ,a lon e andab andon ed ;and2 )h e a l thc a r ep rov id e r sh av ingun r e a l i s t i cexp e c t a t ion sfo rc a r eg iv e r s e l f c a r e(L i l lye ta l . ,2012 ) .Th eICPWDinth eL i l lye ta l .(2012 )s tudyr epo r t edth a t , a l thoughth eyw e r eaw a r eo fth eb en e f i t so fs e l f c a r e ,m anyfoundth i sch a l l eng ingto a c comp l i sh .Fu r th e r ,th eICPWDr epo r t ed ap e r c ep t ionth a tPCP sexp e c t edth emtob eab l e top e r fo rms e l f c a r eandth i sp l a c edadd i t ion a lb u rd enandr e spon s ib i l i tyonth eICPWDto m e e ttho s eexp e c t a t ion s. W i thr e sp e c ttof e e l ingfo rgo t t en ,ICPWDr epo r t edf e e l inga si f th eyw e r eb e ingt ak enfo rg r a n t edbyth ec a r er e c ip i en t ,f am i lym emb e r s ,PCP s ,and r ep r e s en t a t iv e so fth eh e a l thc a r esy s t em .S ev e r a lICPWDf e l ta sthoughth eyh adtof igh tfo r r e cogn i t iono fth e i rwo rkandtoh av eth e i rownsuppo r tn e ed sm e t .ICPWDexp r e s s edan e ed fo rr e f e r r a l sandin fo rm a t iona roundd em en t i aandav a i l ab l es e rv i c e s ,in c r e a s edoppo r tun i t i e s fo rr e sp i t e ,anda s s i s t an c edu r ingth et r an s i t iono fc a r er e c ip i en t stor e s id en t i a lc a r e .M any s tudyp a r t i c ip an t sr epo r t edth a tth eICPWDw a i t edtoolongb e fo r er equ e s t inga s s i s t an c e f romfo rm a ls e rv i c ep rov id e r s .L i l lye ta l .(2012 )s t a t edth a tth i sw a sno tasu rp r i s ingf ind ing con s id e r ingth ep e r c e iv edexp e c t a t ion so fPCP sr e l a t edtoc a r eg iv e r s ’r e spon s ib i l i tyand ab i l i tyfo rs e l f c a r e ,a sw e l la sth el im i t edamoun to ffo rm a lsupp o r ts e rv i c e sa c tu a l ly av a i l ab l e . Th eau tho r sno t edth a ts ev e r a lm e thodo log i c a ll im i t a t ion sex i s t ed .F i r s t ,th es amp l e s i z ew a ssm a l landhomog enou s .Th eexp e r i en c e so fm enw e r eno tw e l l r ep r e s en t edinth e s amp l e .Th ee thn i c i tyo fth ep a r t i c ip an t sw a sno tdo cum en t ed .S t r eng th so fth es tudyno t ed byth eau tho r sin c lud edh av ingPCP sandvo lun t e e r sinvo lv edinth efo cu sg roup s ,wh i ch 55   add edd i f f e r en tp e r sp e c t iv e sabou tth eexp e r i en c e so fICPWD .How ev e r ,th i sm ayh av ea l so a c t eda sal im i t a t iona sth ec a r eg iv e rr e spon s e sm ayh av eb e enin f lu en c edbyth ep r e s en c eo f PCP s . G a lv in ,Tod r e s ,andR i ch a rd son(2005 )p e r fo rm edas ing l ec a s en a r r a t iv es tudyabou t on ec a r eg iv e r ’ sexp e r i en c e so fp rov id ingc a r etoh i sw i f ew i thd em en t i a .Th eau tho r scho s e th i sn a r r a t iv einqu i ryino rd e rtop rov id ead ep thandm e an ingtoth ecomp l exjou rn ey ICPWDf a c e .P r in c ip l e sth a ts t emm edf romh e rm en eu t i cph enom eno logyw e r eu s edto o rg an i z eandan a ly z eth ein fo rm a t ionob t a in edth roughth es ing l etwo hou rin t e rv i eww i th th es tudyp a r t i c ip an t(G a lv ine ta l . ,2005 ) . Th r e eth em e sem e rg edf romth i sin t e rv i ewr eg a rd ingth ec a r eg iv ingjou rn ey .Th e f i r s tth em eth a tw a sd i s cov e r edw a sth econ c ep tth a t‘ som e th ingi sw rong ’ .M r .M .d e s c r ib ed th ec r i s i sinvo lv edw i thm emo rylo s sinh i sw i f edu r ingth ee a r lys t ag el e ad ingupto d i agno s i s ,th eso c i a li so l a t ion ,t ry ingtoe s t ab l i shan ewr e l a t ion sh ipw i th inth e i rex i s t ing on e ,andc r e a t iv e lyad ju s t ing“ sh a r edl i f eth a ti spo s s ib l e ”a sth ed em en t i ap rog r e s s ed (G a lv ine ta l . ,2005 ,p .6 ) . O th e rsh a r edexp e ri en c e sf e l lund e rth es e condth em eo f‘ th ech a l l eng ingsh a r ed jou rn ey :b e ingth ec a r e r ’ ,wh i chin c lud edch a l l eng e sr e l a t edtophy s i c a lc a r e ,m ed i c a t ion m an ag em en t ,r e spond ingtos id ee f f e c t sf romm ed i c a t ion s ,andb e ingv ig i l an ttono t i c ingand a c t inguponch ang e sinh i sw i f e ’ scond i t ion .Animpo r t an td i f f i cu l tya s so c i a t edw i th c a r eg iv ingth a tw a sr epo r t edby M r .M . ,an dw a ss im i l a rtoth ef ind ing so fL i l lye ta l . ’ s (2012 )s tudy ,w a sth ech a l l eng ea s so c i a t edw i thac a r eg iv e r ’ ss e l f c a r e .Fo rex amp l e ,M r .M . foundth a ts e l f n eg l e c to c cu r r eda tt im e s ,andh etu rn edtor e sp i t ewh enh er e cogn i z edth i s 56   o c cu r r ing .How ev e r ,a l t hough M r .M .f e l tr e l i e fa s so c i a t edw i thu t i l i z ingr e sp i t e ,h ea l so d e s c r ib edexp e r i en c ingf e e l ing so fgu i l twh enh ed ids e ekou tth i ss e rv i c e . Th ef in a lth em einvo lv ed‘ cop ingth roughm e an ingm ak ing :advo c a cy ’ .M r .M . d i s cu s s edth eimpo r t an c eo fcon t inu i tyo fc a r e ,andh av ingtol e a rnabou td i f f e r en tl ev e l so f fo rm a lsuppo r tandwh entoa c c e s sth em ,s in c e“ su chanin t eg r a t ed‘m ap ’w a sno tp rov id ed fo rh im ”(G a lv ine ta l . ,2005 ,p .7 ) .Fu r th e r ,M r .M .d e s c r ib edhowt ak ingonth ero l eo f advo c a t ew a sap a r amoun tw ayfo rh imtom ak em e an ingou to fth e i rd i f f i cu l tc i r cum s t an c e s . Ano t ab l ew e akn e s so fth eG a lv ine ta l .(2005 )s tudyw a sth a ti ton lyin c lud edth e l e a rn edexp e r i en c e so fon ep a r t i c ip an t .How ev e r ,th eth em e sth a tem e rg edf romth en a r r a t iv e w e r es im i l a rtom anyo th e rc a r eg iv e r ’ sexp e r i en c e sandp rov id edv a lu ab l ein s igh tin toth e w ay sth a tth e s eexp e r i en c e sc anh e lptod r iv ec l in i c a lp r a c t i c ed ev e lopm en tand imp rov em en t(G a lv ine ta l . ,2005 ) .Th eth em e sth a th av eem e rg edinth i ss tudya r e con s i s t en tw i thth eo th e rqu a l i t a t iv es tud i e sth a th av eb e enr ev i ew edthu sf a r . K a r l s sone ta l .(2015)p e r fo rm edaqu a l i t a t iv es tudyu s ingfo cu sg roupm e thodo logy . Inth i ss tudy ,137ICPWDandth e i rc a r er e c ip i en t sp a r t i c ip a t edinfo cu sg roupin t e rv i ew sin e igh tEu rop e ancoun t r i e s .Th epu rpo s eo fth es tudyw a stoinv e s t ig a t eth ev i ew so fth e s e p a r t i c ip an t sr eg a rd ingin t e r p ro f e s s ion a lin fo rm a t ion ,co l l abo r a t ion ,andcommun i c a t ion th roughth ed em en t i at r a j e c to ry .Pu rpo s iv es amp l ingw a su s edino rd e rtoc ap tu r ea r ep r e s en t a t iv es amp l eo ftyp e so fc a r ea c ro s sth ed i s e a s et r a j e c to ryands t ag e so fd em en t i a . F ind ing sf romth efo cu sg roup sr e su l t edinth ed ev e lopm en to fth r e eth em e s in c lud ingth en e edfo rap r im a rycoo rd in a to r ,av a i l ab i l i tyo find iv idu a l i z edc a r eands e rv i c e s , andad equ a t ecoo rd in a t iono fc a r eb e tw e enfo rm a lsuppo r t s .Th en e edfo rac en t r a l i z ed i n fo rm a t ionpo in to rp e r sonw a sa l soemph a s i z ed .On ec a r eg iv e rs t a t edth a t“ th e r ei sno 57   coo rd in a t ion !B e c au s eth a ti sno tth ero l eo ftho s ea s so c i a t ion s .Th e r eshou ldb eon ec en t r a l po in twh e r eev e ryon eshou ldb eab l etogoandg e tin fo rm a t ion… ”(K a r l s sone ta l . ,2015 ,p . 1412 ) . Th eICPWDp a r t i c ip an t sa l sono t edanapp r e c i a t ionfo rtho s eo c c a s ion sonwh i ch PCP sa cknow l edg edth e i rknow l edg eandsk i l l ,y e tcon t inu edtop rov id ecoun s e l ingand edu c a t iontoth em .Th ec a r eg iv e r sexp e c t edPCP stob ev e ryknow l edg e ab l ew i thr eg a rd sto d em en t i a .E a r lyd i agno s i s ,con t inu i tyo fc a r e ,andad equ a t ein t e r s e c to r a lin fo rm a t ion sh a r ingw e r ea l socon s id e r edimpo r t an tbyth es tudyp a r t i c ip an t ssoth a tth eywou ldno tb e r equ i r edtor ep e a tth es am ein fo rm a t iontonum e rou sh e a l t hc a r ep rov id e r s .S t ag e r e l a t ed d em en t i ac a r ew a scon s id e r edgoodp r a c t i c ebysom eo fth es tudyp a r t i c ip an t s . B a s edonth es tudyf ind ing s ,K a r l s sone ta l .(2015 )sugg e s t edth eu s eo fco l l abo r a t iv e c a r eo rc a s em an ag em en tin t e rv en t ion s .How ev e r ,s tud i e sbyConno re ta l .(2008 )andJ an s en e ta l .(2011 )th a tex am in edc a s em an ag em en tin t e rv en t ion sd emon s t r a t edth a tth e r ei s in su f f i c i en tev id en c etosuppo r tth eu s eo fc a s em an ag em en ttoimp rov ein fo rm a lc a r eg iv e r w e l lb e ing .S tudys t r eng th sin c lud edanad equ a t es amp l es i z eandth ein c lu s iono fnum e rou s quo t a t ion sth a temph a s i z edth em e an ingo fth ec a r eg iv e r s ’exp e r i en c e s . J enn ing se ta l .(2015 )condu c t edac ro s s s e c t ion a lob s e rv a t ion a lcoho r ts tudyto inv e s t ig a t eth eexp e r i en c e so fICPWDo fp a t i en t sr e f e r r edtoad em en t i ac a r ep rog r am (DCP ) .Th eau tho r ssough ttod e t e rm in eth er e l a t ion sh ipb e tw e enc a r eg iv e rs t r a in , d ep r e s s iv esymp tom s ,ands e l f e f f i c a cyfo rm an ag ingc a r eg iv ingi s su e s ,andth etyp eo f r e f e r r ingPCP .S tudyp a r t i c ip an t sw e r een ro l l edinth eUn iv e r s i tyo fC a l i fo rn i aandLo s Ang e l e sDCPa longw i thth ec a r er e c ip i en t .Ato t a lo f307ICPWDw e r esu rv ey edov e ra 58   p e r iodo fon ey e a r .Th ec a r eg iv e r sw e r emo s t lyf em a l e(67% )ande i th e ranadu l tch i ld (49% )o rspou s e(41% )o fth ec a r er e c ip i en t . V a l id a t edtoo lsw e r eu s edtom e a su r ec a r eg iv e rou t com e s .D ep r e s s iv esymp tom s w e r em e a su r edu s ingth en in ei t emP a t i en tH e a l thQu e s t ionn a i r e(PHQ 9 )(K ro enk e ,Sp i t z e r , &W i l l i am s ,2001 ) .Th e13i t em Mod i f i edC a r eg iv e rS t r a inInd ex(MCS I )(Tho rn ton& T r av i s(2003 )w a su s edtom e a su r ec a r eg iv e rs t r a in ,andth eN eu rop sy ch i a t r i cInv en to ry Qu e s t ionn a i r e(NP IQ )(K au f e r ,Cumm ing s ,&K e t ch e l ,2000 )w a su s edtom e a su r eth e c a r eg iv e r ’ sl ev e lo fd i s t r e s sr e l a t edtoth e i rp e r c ep t iono fBPSDs ev e r i tyinth ec a r er e c ip i en t . An in ei t e msu rv eyw a sa l sou s edtod e t e rm in eth ec a r eg iv e r ’ sp e r c ep t iono fs e l fe f f i c a cyo f c a r eg iv ing ,th e i rPCP ’ sr e cogn i t iono fth ee f f e c to fth ec a r er e c ip i en t ’ scogn i t iv eimp a i rm en t onth ec a r eg iv e r ’ sh e a l th ,andwh e th e ro rno tth ec a r eg iv e rh adr e c e iv ededu c a t ionr eg a rd ing d em en t i aandc a r eg iv ing . S tudyf ind ing sd emon s t r a t edth a t,onav e r ag e ,c a r eg iv e r sexp e r i en c edm i ld d ep r e s s iv esymp tom s ,and15%r epo r t edmod e r a t etos ev e r esymp tom s .Th em e an MCS I s co r ew a s11 .5wh i chr e f l e c t edmod e r a t el ev e l so fs t r a in ,an d38%o fc a r eg iv e r sr epo r t ed h ighl ev e l so fs t r a in .Onth eNP I Q ,c a r eg iv e r sr epo r t edag i t a t iono ragg r e s s ionbyth ec a r e r e c ip i en tandn igh t t im eb eh av iou r sa smo s td i s t r e s s ing ,l e ad ingtocop ingd i f f i cu l t i e s .Th e m e ans e l fe f f i c a cys co r ew a slowa t2 .8 .T h e r ew e r enos t a t i s t i c a l lys ign i f i c an td i f f e r en c e s b e tw e enc a r eg iv e r swhow e r er e f e r r edtoth eDCPbyth e i rg e r i a t r i c i an ,in t e rn i s t , p sy ch i a t r i s t ,n eu ro log i s t ,o rf am i lyphy s i c i an .W i thr e sp e c ttoin fo rm a t ionf romth ec a r e r e c ip i en t ’ sPCP ,on ly25%o fc a r e g iv e r sr e coun t edb e ingm ad eaw a r eo fsuppo r t iv es e rv i c e s byth e i rPCPwh i l e39%r e c e iv edadv i c eonm an ag ingd em en t i ar e l a t edi s su e s ,and35% r e c e iv edadv i c eabou tpo t en t i a ld em en t i a r e l a t edi s su e sth eym ayf a c e .Th el a s tth r e er e su l t s 59   a r ep a r t i cu l a r lyin t e r e s t ing ,a smo r eth anh a l fo fth er e f e r r ingphy s i c i an sw e r eg e r i a t r i c i an s w i thex t en s iv eknow l edg er eg a rd ingd em en t i ac a r e( J enn ing se ta l . ,2015 ) . B a s edonth es tudyf ind ing s ,J enn ing se ta l .(2015 )con c lud edth a tmo r esuppo r ti s n e ed edfo rICPWDa sm anyh av eunm e tc a r eg iv ingn e ed swh i chm ayb e ,inp a r t ,du etoth e cu r r en tp r im a ryc a r emod e lin su f f i c i en t lyadd r e s s ingcomp l exd em en t i ac a r ea sar e su l to f t im econ s t r a in t s ,fo rex amp l e .J enn ing se ta l .(2015 )sugg e s tth a tth ed ev e lopm en tand imp l em en t a t iono fcomp r eh en s iv ed em en t i ac a r emod e l sm ayh e lptoadd r e s ssu chunm e t n e ed so fICPWD . Ano t ab l es t r eng tho fth es tudyw a sth ead equ a t es amp l es i z e .How ev e r ,s ev er a l s tudyl im i t a t ion sw e r ea l soid en t i f i edbyth eau tho r s .F i r s t ,a sth es tudyp a r t i c ip an t sandc a r e r e c ip i en t sw e r er e f e r r edtoth eDCP ,th ec a r eg iv e r ’ sl ev e lo fs t r a inandd em en t i as ev e r i tyo f th ec a r er e c ip i en tm ayh av eb e enh igh e rth anth eav e r ag eICPWD .S e cond ,th es tudym ay no tb eg en e r a l i z ab l edu etoth ep a r t i c ip an td emog r aph i c s(mo s t lyf em a l e ,C au c a s i an ,and m ed i c a l lyin su r ed ) . On lyon es tudyex am in edth eexp e r i en c e so fe thn i c a l lyd iv e r s eICPWD .Inth i s qu a l i t a t iv es tudy ,Bough twoode ta l .(2011 )u s edamod i f i edg round edth eo ryapp ro a chto ex am in eth ep e r c ep t ion sandexp e r i en c e so fCALDICPWD .On ehund r edandtw en tyon e f am i lyICPWDw e r er e c ru i t edf romA r ab i c sp e ak ing ,Ch in e s e sp e ak ing ,I t a l i an sp e ak ing , andSp an i sh sp e ak ingcommun i t i e sinAu s t r a l i a .Th es tudyp a r t i c ip an t sw e r ep r im a r i ly f em a l e(n=88 )andadu l tch i ld r eno fth ec a r er e c ip i en t( n=93 ) .S tudyd a t aw a sob t a in ed f rom16fo cu sg roup s ,con s i s t ingo fapp rox im a t e lye igh tp eop l ef rome a chg roup . Fou rth em e sem e rg edf romth ed a t a ,in c lud ingc a r eg iv ingdu t i e s ;f am i lyr e l a t ed i s su e s ;emo t ion a landp e r son a lcon c e rn s ;andd em en t i a r e l a t edcon c e rn s .ICPWDf roma l l 60   CALDb a ckg round sw e r einvo lv edw i thphy s i c a landemo t ion a lc a r e ,anda s s i s t an c ewh en v i s i t ingPCP s .W i thr e sp e c ttoc a r eg iv ingdu t i e s ,on lyth eI t a l i an sp e ak ingandSp an i sh sp e ak ingc a r eg iv e r sr epo r t eda c t inga sadvo c a t e swh i l eth ec a r er e c ip i en tw a sinth eho sp i t a l . M anyo fth ec a r eg iv e r sp e r c e iv edth eho sp i t a ls t a f ftob eun ab l etom e e tth en e ed so fth ec a r e r e c ip i en t ,o f t enl e ad ingtoth ec a r eg iv e rsp end inglongp e r iod so ft im einth eho sp i t a lto suppo r tth ec a r er e c ip i en t .Th ei mpo r t an c eandimp l i c a t ion so fen cou r ag ingICPWDto p rov id eb a ckg roundp a t i en tin fo rm a t iontotho s eh e a l thc a r ewo rk e r swhoa r eun f am i l i a r w i thth ec a r er e c ip i en tw i l lb ed i s cu s s edfu r th e rinth efo l low ingch ap t e r . Exp e c t edg end e rro l e sandf am i lycon f l i c tsw e r ed i s cu s s edbySp an i sh sp e ak ingand I t a l i an sp e ak ingc a r eg iv e r s .Fo rex amp l e ,th ewom enw e r eexp e c t edtop e r fo rmsp e c i f i c t a sk s ,su cha sp e r son a lc a r efo rth ec a r er e c ip i en t ,wh i chm ayh av eb e enp e r c e iv edinth e cu l tu r ea sin app rop r i a t efo rm a l e stod o .W i thr eg a rd stof am i lycon f l i c t s ,twopo t en t i a l r e a son sfo rcon f l i c tw e r eb rough ttol igh tinth es tudy .Th ef i r s tcon f l i c tr e l a t edtor e fu s a lo f f am i lym emb e r stop a r t i c ip a t einc a r e ,andth es e condw a sr e l a t edtocon f l i c tb e tw e enadu l t ch i ld r enc a r eg i v e r sandth e i rspou s e sdu etoth ed em and sinvo lv edinc a r ep rov i s ionwh i ch tookt im eaw ayf romth ec a r eg iv e r ’ sf am i ly .W i thr e sp e c ttoemo t ion a landp e r son a l con c e rn s ,a l lo fth es tudyp a r t i c ip an t sr epo r t edcon c e rn sr e l a t edtog r i e fandlo s s ,l a cko f t im efo rs e l f ,anx i e tyabou tth efu tu r e ,andd e t e r io r a t iono fth e i rh e a l th .Und e rth eth em eo f d em en t i a r e l a t edcon c e rn s ,Ch in e s e ,I t a l i an ,andSp an i sh sp e ak ingp a r t i c ip an t sno t edBPSD a sacon c e rn ,wh e r e a sA r ab i c ,I t a l i an ,andSp an i sh sp e ak ingp a r t i c ip an t sr ep o r t eds a f e ty i s su e sandc a r er e c ip i en t scon fu s ingf am i lym emb e r sw i tho th e rm emb e r so fth ef am i lya s con c e rn s . 61   Bough twoode ta l .(2011 )foundth a tf am i l i smandcu l tu r a lp i e tyimp a c t edth e d e c i s ion sth a tCALDICPWDm ad e .Th e s et r a i t sshou ldb econ s id e r edbyPCP swh en in c lud ingICPWDind em en t i ac a r ep l ann ing .Add i t ion a lcu l tu r a lcon s id e r a t ion sfo rPCP s in c lud eth epo s s ib i l i tyo fnum e rou sin fo rm a lc a r eg iv e r sb e inginvo lv edind e c i s ionm ak ing , th es t r e s sth a tCALDICPWDm ayexp e r i en c er e l a t edtoth epo t en t i a ln e edtot r an s l a t e m ed i c a lin fo rm a t iontoth ec a r er e c ip i en t ,andth ee th i c sandch a l l eng e sa s so c i a t edw i th u s ingc a r eg iv e r sa st r an s l a to r s(Bough twoode ta l . ,2011 ) .Bough twoode ta l .(2011 )a l so s t a t edth a tPCP swhoin t e r a c tw i thICPWDf romCALDcommun i t i e smu s tr e f l e c tupon th e s ec i r cum s t an c e sandcon s id e rpo s s ib l ew ay sinwh i chtosuppo r tsu chc a r eg iv e r sdu r ing p r im a ryc a r ev i s i t s . Th ecomp a r i sono ffou rd i f f e r en tcu l tu r a lg roup s ,r a th e rth anju s ton eo rtwo ,i sa no t ab l es t r eng tho fth es tudy .Th i sb ro ad e rp i c tu r ep rov id e sPCP sw i thab e t t e r und e r s t and ingo fth epo t en t i a ln e ed so fm emb e r so fd i f f e r en tCALDcommun i t i e s . Twol im i t a t ion so fth es tudyw e r eid en t i f i edbyth er e s e a r ch e r s .Th ef i r s tl im i t a t ion w a sth eex c lu s iono fAng lophon ep a r t i c ip an t sinwh i chtocomp a r eexp e r i en c e s .Th es e cond l im i t a t ionw a sth ein c lu s iono fon lyth ed i r e c tc a r eg iv e r sinth es tudyr a th e rth ano th e rf am i ly m emb e r sa sw e l l .I twou ldh av eb e env a lu ab l etocomp a r eth ep e r c ep t ion so fo th e rf am i ly m emb e r sw i ththo s eo fth ed i r e ctc a r eg iv e r sr eg a rd ingf am i lycon f l i c tandd e c i s ion sabou t th ec a r er e c ip i en t ’ sc a r e(Bough twoode ta l . ,2011 ) .Bough twoode ta l .(2011 )con c lud edth a t c a r eg iv ingexp e r i en c e sw e r ed e ep lyin f lu en c edbycu l tu r e ,andth a tPCP smu s tb eaw a r eo f cu l tu r a lcon t ex twh enp rov id ingc a r etop a t i en t sw i thd em en t i aandth e i rin fo rm a lc a r eg iv e r s . Twor e s e a r chs tud i e sin c lud edinth i sr ev i ewsough ttoid en t i fyth epo s i t iv e exp e r i en c e so fICPWDth roughou tth ec a r eg iv ingjou rn ey .Inth ef i r s ts tudy ,Coh en , 62   Con an ton i a ,andV e rn i ch(2002 )d e s c r ib eth eexp e r i en c e so f289ICPWDwhow e r ep a r to fa s amp l eo fc a r eg iv e r sd e r iv edf romth eC an ad i anS tudyo fH e a l thandAg e ing(L ind s ay , 1994 ) .In fo rm a t ionw a sco l l e c t edth roughp e r son a lin t e rv i ew sw i thth ec a r eg iv e r s .Th e r e su l t sd emon s t r a t edth a tth em a jo r i tyo fth ec a r eg iv e r sinth es tudyexp e r i en c eda tl e a s ton e po s i t iv ea sp e c to fc a r ingdu r ingth e i rc a r eg iv ingjou rn ey .Twohund r edande l ev en(73% ) cou ldf indon epo s i t iv ea sp e c t ,wh i l e6 .9%exp r e s s edmo r eth anon e .Sp e c i f i cpo s i t iv e f ind ing sa s so c i a t edw i thth ec a r eg iv ingro l ein c lud edcomp an ion sh ip(22 .5% ) ,fu l f i l lm en t (21 .8% ) ,en joym en t(12 .8% ) ,fu l f i l lm en to fas en s eo fdu ty(10 .4% ) ,imp rov edQOL(7 .3% ) , andf ind ingas en s eo fm e an ing(5 .9% ) .U s ingNoon anandT enn s t ed t ’ s(1997 )con c ep tu a l mod e l ,Coh ene ta l .(2002 )u s edas t ag eds t epw i s emu l t ip l er eg r e s s ionapp ro a chwh i ch in co rpo r a t edcon t ex tu a lv a r i ab l e s(d emog r aph i c s ) ,s t r e s so rv a r i ab l e s( c a r er e c ip i en t ’ sADL l im i t a t ion s ) ,m ed i a to rv a r i ab l e s( s e rv i c e su s ed ,andpo s i t iv ea sp e c t so fc a r ing ) ,andou t com e v a r i ab l e s(bu rd en ,s e l f a s s e s s edh e a l thm e a su r e s ,andd ep r e s s ion ) .B a s edonth es tudy f ind ing s ,th eau tho r ssugg e s tth a tc l in i c i an sa skabou tpo s i t iv ec a r eg iv ingexp e r i en c e sin o rd e rtob e t t e rund e r s t andth ein fo rm a lc a r eg iv e rexp e r i e n c eandp rov id ea s s i s t an c etotho s e whon e edi t . P e a co cke ta l .(2010 )p e r fo rm edas e cond a ryan a ly s i so faC an ad i anm ix edm e thod s tudy(Fo rb e se ta l . ,2008 )ino rd e rtog a ing r e a t e rin s igh tin toth eov e r a l lexp e r i en c e so f ICPWD .Th eau tho r su s edas t r eng t hb a s edp e r sp e c t iv e ,wh i cha cknow l edg e sbo thn eg a t iv e andpo s i t iv eexp e r i en c e s ,ino rd e rtoan a ly z eth ed a t a(P e a co cke ta l . ,2010 ) .ICPWDf rom bo thru r a landu rb ancommun i t i e sinOn t a r io ,M an i tob a ,andS a sk a t ch ew anw e r er e c ru i t ed f romcommun i tysuppo r tp r og r am s ,su cha sth eA l zh e im e rSo c i e tysuppo r tg roup sfo r c a r eg iv e r s .Th i r ty s ixICPWDp a r t i c ip a t edinfo cu sg roup sandth r e eund e rw en tind iv idu a l 63   in t e rv i ew s .Th eu s eo fop en end edin t e rv i ewqu e s t ion sw a sano t ab l es t r eng tho fth es tudya s i ta l low edfo ranou tpou r ingo fr e f l e c t ionandf e e l ing so fth eICPWD(P e a co cke ta l . ,2010 ) . Th es tudyf ind ing sp rodu c edf iv eth em e s :r e c ip ro c i ty ;p e r son a lg row th ;d i s cov e ryo f inn e rs t r eng th sbyconn e c t ingw i tho th e r s ;d ev e lop ingas en s eo fcomp e t en c ea sac a r eg iv e r ; andanoppo r tun i tytobu i lds t rong e rr e l a t ion sh ipw i thandacomm i tm en ttoth ec a r e r e c ip i en t(P e a co cke ta l . ,2010 ) .Fo rex amp l e ,inth es tudym anyadu l tch i ld r enandhu sb and s vo i c edf e e l ing so fr e c ip ro c i ty ;how ev e r ,w iv e sd idno t .Th i sm ayb eexp l a in edbyth ef a c t th a tm anywom enm aycon s id e rc a r eg iv ingfo raspou s etob eju s tacon t inu an c eo fth ero l e th eya lw ay sh e ldw i th inth ef am i lycon t ex twh e r e a s ,fo radu l tch i ld r eno rhu sb and s,adu l t c a r eg iv ingm ayb eanen t i r e lyn ewexp e r i en c e . B a s edonth ef ind ing so fth es tudy ,P e a co cke ta l .(2010 )po s i tth a tPCP sand r e s e a r ch e r sa l ik eshou ldno ta s sum eth a tICPWDa r eeng ro s s edinon lyn eg a t iv ec a r eg iv ing exp e r i en c e s .Id en t i fy ingth epo s i t iv ea sp e c t so fth ec a r eg iv ingexp e r i en c ec anh e lptobu i ld po s i t iv er e l a t ion s h ip sb e tw e enbo thPCP sandICPWD ,andb e tw e enICPWDandr e c ip i en t s . Fu r th e rmo r e ,fo cu s ingonpo s i t iv eexp e r i en c e sm ayen cou r ag eICPWDtov i ewch a l l eng e sa s oppo r tun i t i e sr a th e rth anob s t a c l e s .Animpo r t an tcon s id e r a t ionno t edbyth eau tho r si sth e n e edtoavo idp l a c ingtoomu chemph a s i sonpo s i t iv ea sp e c t so fc a r eg iv ing ,wh i chr i sk s pu sh ingth eICPWDb eyondth e i rc ap ab i l i t i e s . Ano t ab l el im i t a t iono fth es tudyid en t i f i edbyth eau tho r si sth a tmo s to fth es tudy p a r t i c ip an t sw e r eu s e r so fcommun i tysuppo r t i v es e rv i c e s .W e l l suppo r t edc a r eg iv e r sm ay r epo r tmo r epo s i t iv ea sp e c t so fc a r eg iv ingcomp a r edtotho s ewhodono tu s eth e s es e rv i c e s , th e r ebypo t en t i a l lyin f lu en c ingth es tudyr e su l t s . 64   R ea ch ingth eendo fth eroad :N ea rth eendo fth ejou rn ey .On lyon ear t i c l einth e r ev i ewp e r t a in edtoICPWDexp e r i en c e sdu r ingth eends t ag e so fd em en t i a .Asm a l l qu a l i t a t iv es tudybySh an l eye ta l .(2011 )exp lo r edth eexp e r i en c e so f15spou s eo radu l t ch i ldICPWDth roughin d ep th ,s em is t ru c tu r edin t e rv i ew s .F iv eth em e se m e rg edf romth e d a t a :ob t a in ingfo rm a landin fo rm a lsuppo r tin c lud ingr e sp i t e ;h av ingtot ru s to th e r sw i th c a r e ;m an ag ingth elon e l in e s so fb e ingac a r eg iv e r ;w i tn e s s ingalov edon ef ad eaw ay ; an t i c ip a t ingandexp e r i en c ingd e a th ;andr e e s t ab l i sh ingl i f ea f t e rth efun e r a l .C a r eg iv e r sin th es tudyexp r e s s edf e e l ing so fex t r em elon e l in e s sandth en e edfo remp a thy ,y e tm anyd id no texp e r i en c eth i sf romfo rm a lc a r ep rov id e r so rf am i ly .Th el a cko femp a thyandsuppo r t f romPCP scou ldb er e l a t edtoth ef a c tth a td em en t i ai smo s to f t enno tv i ew eda sap a l l i a t iv e d i agno s i s .PCP sm ayno tr e cogn i z eth en e edfo rp a l l i a t iv esuppo r tdu etoth el eng thyd i s e a s e t r a j e c to rys e eninp a t i en t sw i thd em en t i a .V i ew ingd em en t i aa sap a l l i a t iv ed i agno s i sf rom th ein i t i a ld i agno s i sm ayh e lpPCP stob e t t e rp r ep a r eICPWDfo rth eendo fth ejou rn eyw i th th ec a r er e c ip i en tandb eyond . B a s edonth eexp e r i en c e so fICPWDinth es tudy ,Sh an l eye ta l .(2011 )s t r e s s edth e impo r t an c eo fp rov id ingund e r s t and ing ,emp a thy ,ands en s i t iv i tytoICPWD ,p a r t i cu l a r ly du r ingth eends t ag e so fd em en t i a .Add i t ion a l ly ,d e sp i t eth ef a c tth a tPCP smo s to f t en en cou r ag eind iv idu a l stom ak eth e i rownh e a l thc a r ed e c i s ion s ,Sh an l eye ta l .(2011 ) sugg e s t eden cou r ag ingc e r t a inc a r eg iv e r stoa c c e s ssuppo r t iv es e rv i c e si fn e ed ed . Ano t ab l el im i t a t iono fth i ss tudyi sth esm a l ls amp l es i z e,wh i chl im i t s g en e r a l i z ab i l i ty . 65   In fo rma lCa r eg iv e rN e ed sTh roughou tth eCa r eg iv ingJou rn ey D e sp i t eongo ingimp rov em en t sw i thr e sp e c ttoin fo rm a lc a r eg iv e rr e cogn i t ionand suppo r t iv eg roup s ,al a cko fund e r s t and ingo fin fo rm a lc a r eg iv e rn e ed sandth ew ay sin wh i chPCP sc anad equ a t e lym e e ttho s en e ed si sev id en c edbyr e cu r r en tho sp i t a ladm i s s ion s r e l a t edtoc a r eg iv e rbu rnou tandr ep e a t edc a r eg iv e rr epo r t so fro l es t r a inandpoo rcop ing . Rob in sone ta l .(2013 )con cu r ,s t a t ingth a t“ e f fo r t stom e e tc a r eg iv e r s ’n e ed sr em a inp i e c e m e a linap a t chwo rkc a r ed e l iv e rysy s t emth a th a simp rov edl i t t l eov e rth ep a s ts ev e r a l d e c ad e s ”(p .502 ) .I ti simp e r a t iv eth a tPCP send e avou rtoid en t i fyth e s en e ed so fin fo rm a l c a r eg iv e r sino rd e rtop rov id ecomp r eh en s iv e ,e f f e c t iv e ,ho l i s t i c ,p e r son c en t r edc a r e . Inam ix edm e thodexp lo r a to r ys tudy ,S t i r l inge ta l .(2010 )comp a r edm e a su r e so f c a r eg iv e rbu rd enw i thunm e tn e ed sandsuppo r ts e rv i c e sr e c e iv ed .Tw en ty fou rICPWD w e r er e c ru i t edf romth eHob a r tch ap t e ro fth eA l zh e im e r ’ sAu s t r a l i aO rg an i z a t ion ;20o f th e s ec a r eg iv e r scon s en t edtos tudyp a r t i c ip a t ion .Th ec a r eg iv e r sinth es amp l ew e r e p r im a r i lyf em a l e(90% ) ,aspou s eo fth ec a r er e c ip i en t(70% ) ,anda l lw e r eov e r66y e a r so f ag e .Th es tudytookp l a c eov e r12w e ek sands tudyp a r t i c ip an t scomp l e t eds e l f r epo r t ed m e a su r e sdu r ingw e ekon e ,fou r ,e igh t ,and12th a ta s s es s edbu rd enands t r e s s(no rm a t iv e n e edm e a su r e s )ands e rv i c ew an t s( f e l tn e edm e a su r e s ) .Th es tudyp a r t i c ip an t sa l sologg ed th e i rs e rv i c eu s ag eov e rth e12 w e ekp e r iod( exp r e s s edn e edm e a su r e s )andp a r t i c ip a t edin th r e es em i s t ru c tu r edin t e rv i ew sl a s t ingb e tw e en30and90m inu t e se a ch . Ob j e c t iv ec a r eg iv e rbu rd enw a sa s s e s s edbym e a su r ingfun c t ion a ld ep end en cyand d em en t i as ev e r i tyo fth ec a r er e c ip i en tu s ingth eD em en t i aR a t ingS c a l e 2(DSR2 )(Mon s ch e ta l . ,1995 )andB ay e rADLS c a l e(BALDS )(H indm a r ch ,L e h f i e ld ,d eJohgh ,&E r z igk e i t , 1998 ) .Sub j e c t iv ec a r eg iv e rbu rd enw a sm e a su r edu s ingth eC a r e r s ’Ch e ck l i s t(Hodg son , 66   H igg in son ,&J e f f e ry s ,1998 )andG en e r a lH e a l thQu e s t ionn a i r e(GHQ30 )(Go ldb e rg& W i l l i am s ,1988 ) .S tudyr e su l t sd emon s t r a t edar e l a t ion shipb e tw e ens t r e s sinth eICPWD andunm e ts e rv i c en e ed s(p=0 .05 )andin fo rm a t ionn e ed s(p=0 .01 ) .Ov e r a l l ,th es tudy f ind ing ssugg e s tth a twh encon s id e r ings e rv i c en e ed so fICPWD ,h av inganund e r s t and ingo f f e l tn e edm ayb emo r eu s e fu lth a tno rm a t iv en e e da sf e l tn e edh a sas ign i f i c an tr e l a t ion sh ip w i thc a r eg iv e r ’ sm en t a lh e a l ths t a tu s . As ign i f i c an tl im i t a t iono fth es tudyw a sth esm a l ls amp l es i z e .S tud i e sw i thl a rg e r s amp l es i z e sa r en e ed edtosuppo r tth ef ind ing so fth i ss tudy .Th eau tho r scon c lud edt h a t g a in inganund e r s t and ingo fwh a ts e rv i c e sth eICPWDw an ti smo r eimpo r t an tth an m e a su r ingp e r c e iv edl ev e l so fbu rd enands t r e s s .F e l tn e edm aya l sob ear e l ev an t‘ r edf l ag ’ o fc a r eg iv e rbu rnou t ,ev enw i thou tth econ sp i cuou s‘ r edf l ag s ’c au s edbyd e c l in einth ec a r e r e c ip i en t(S t i r l inge ta l . ,2010 ) .Th e r e fo r e ,th eau tho r sr e comm endmov ingaw ayf rom no rm a t iv en e ed sa s s e s sm en tinc l in i c a lp r a c t i c eandfo cu s ingmo r eonvo i c edn e ed so f ICPWD . Inaqu a l i t a t iv es tudybyL eong ,M ad j a r ,andF iv e a sh(2001 ) ,th er e s e a r ch e r s id en t i f i eda r e a so funm e tp e r c e iv edn e edo fICPWDinanAu s t r a l i ancommun i ty .S tudy p a r t i c ip an t s(n=94 )w e r er e c ru i t edf romcommun i tynu r s ings e rv i c e sandlo c a ld em en t i a suppo r tg roupm e e t ing s .Ov e rtwoth i rd so fc a r eg iv e r sw e r ee ld e r lyandf em a l e .Pu rpo s iv e s amp l ingw a su s edtoob t a inav a r i eds amp l eth a tin c lud edc a r eg iv e r sw i thd i f f e r en t b a ckg round sp rov id ingc a r etop e r son sind i f f e r en ts t ag e so fd em en t i a .Qu a l i t a t iv e in t e rv i ew sandasu rv eyw e r eu s edfo rd a t aco l l e c t ion .Th esu rv eycon s i s t edo ftwo ,f iv e i t em L ik e r ttyp es c a l e sfo re a cho fth e42n e edi t em sonth el i s t .T enc a r eg iv e r sinth es tudya l so p a r t i c ip a t edins em i s t ru c tu r edqu a l i t a t iv ein t e rv i ew s . 67   S ixunm e tn e ed sw e r eid en t i f i edbys tudyp a r t i c ip an t sin c lud ing :know ingth a t som e on ew i l lp rov id ec a r ewh enth eICPWDi sun ab l etodoso ;a24 hou rt e l ephon e in fo rm a t ionl in e ;r e sp i t e ;in fo rm a t ionabou tw ay stod e a lw i ths t r e s s ;t im efo rphy s i c a lr e s t ; andedu c a t ionabou tw ay stod e a lw i thf e e l ing so ff e e l ingt r app ed( ro l ec ap t iv i ty ) .In r e spon s etoth e s es tudyf ind ing s ,L eonge ta l .(2001 )r e comm end edth a tPCP sho ldf am i ly con f e r en c e sw i thICPWDando th e rf am i lym emb e r so rp e r son sinvo lv edw i thc a r eo fp a t i en t w i thd em en t i aino rd e rtoo rg an i z er e sp i t eandd ev e lopana l t e rn a t ep l ano fc a r ei fth e p r im a ryICPWDi st empo r a r i lyo rp e rm an en t lyun ab l etop rov id ec a r e .L eonge ta l .(2001 ) a l sosugg e s t edt ak ingm e a su r e stor a i s epub l i caw a r en e s sabou td em en t i aino rd e rto d e c r e a s eso c i a li so l a t iono fICPWDandc a r er e c ip i en t s . Ro s ae ta l .(2010 )condu c t edam ix edm e thod ss tudyino rd e rtod e t e rm in eth eunm e t n e ed so fICPWDwhow e r ep rov id ingc a r efo rind iv idu a l sw i thmod e r a t etos ev e r ed em en t i a . On ehund r edandtw e lv eICPWDw e r er e c ru i t edf romam emo ryc l in i cinI t a ly . Qu e s t ionn a i r e sw e r eu s edtoid en t i fyp a t i en tn e ed s .C a r eg iv e r ’ sbu rd enw a sa s s e s s edu s ing th eC a r eg iv e rBu rd enInv en to ry(CB I )(Nov ak&Gu e s t ,1989 ) .D ep r e s s ionandanx i e tyw e r e ev a lu a t edu s ingth eC en t r efo rEp id em io log i c a lS tud i e sD ep r e s s ionS c a l e(R ad lo f f ,1977 ) andS t a t e T r a itAnx i e tyInv en to ry(Sp i e lb e rg e re ta l . ,1980 ) ,r e sp e c t iv e ly .In t e r e s t ing ly ,Ro s a e ta l .(2010 )foundth a tth ec a r eg iv e r sd idno texp r e s sag r e a tn e edfo remo t ion a land p sy cho log i c a lsuppo r t ;how ev e r ,d e sp i t eth ef a c tm anyo fth ec a r eg iv e r sh adb e enp rov id ing c a r efo ras ign i f i c an tamoun to ft im e ,th eys t i l ld emon s t r a t edas ign i f i c an tn e edfo rob t a in ing d i agno s i s(65% ) ,edu c a t ionabou td em en t i a(78% ) ,know l edg eabou tph a rm a co log i c a l t r e a tm en t(75% ) ,c a r eg iv e r / c a r er e c ip i en tcommun i c a t ion(83% ) ,andnon ph a r m a co log i c a l m an ag em en to fcogn i t iv e(77% )andb eh av iou r a lp rob l em s(81% ) .B a s edonth e s ef ind ing s , 68   Ro s ae ta l .(2010 )sugg e s t edu t i l i z ingamu l t id i s c ip l in a ryp r im a ryc a r et e amwhoc an p rov id eth e i rexp e r t i s einadd r e s s ingth ed i f f e r en ta r e a so fn e ed . Ino rd e rtoexp lo r eexp e r i en c e so fp a t i en t sw i thd em en t i aandth e i rin fo rm a l c a r eg iv e r sinp r im a ryc a r es e t t ing s ,P ro roke ta l .(2013 )p e r fo rm edasy s t em a t i cr ev i ewand e thnog r aph i cm e t a syn th e s i so f46qu a l i t a t iv eandm ix edm e thods tud i e s .F iv eth em e s r e l a t edtoth e s eexp e r i en c e sw e r eid en t i f i ed .Th ef i r s tid en t i f i edth em ew a s‘ s e ek inga d i agno s i s ’ .Th es e condth em ew a s‘ a c c e s s ingsuppo r t sands e rv i c e s ’ .Th eth i rdw a s ‘ add r e s s ingin fo rm a t ionn e ed s ’ .Th efou r thw a s‘d i s e a s em an ag em en t ’andth ef i f thth em e w a s‘commun i c a t ionanda t t i tud e s ’ .P ro roke ta l .(2013 )d ev e lop edacon c ep tu a lf r am ewo rk th a td e s c r ib e sth ep rog r e s s iono fICPWD ’ sexp e r i en c e sinh e a l thc a r eth roughph a s e s s e ek ingund e r s t and ingandin fo rm a t ion ,id en t i fy ingth ep rob l em ,ro l et r an s i t ion sfo l low i ng d i agno s i s ,andl iv ingw i thch ang e . B a s edonth er e su l t so fth er ev i ew ,P ro roke ta l .(2013 )con c lud edth a t ,ov e r a l l ,th e h e a l thc a r eexp e r i en c efo rICPWDi ssub s t and a rdandp a r t so fc a r eg iv e r s ’exp e r i en c e scou ld b eimp rov edupon .Th eau tho r ss t a t eth a timp l em en t ingc e r t a inin t e rv en t ion s ,su cha sth eu s e o fc a r em an ag e r sandp sy cho edu c a t ion ,m ayb en e f i tICPWD .Th eu s eo fm e t a e thno logyto an a ly z eth el i t e r a tu r ei sas t r eng thr e cogn i z edbyth eau tho r s ,a si ta l low sfo rsupp l em en t a ry an a ly s i sandth ed ev e l opm en to ff r am ewo rk ssu cha sth e“ con c ep tu a lf r am ewo rkfo rth e h e a l thc a r eexp e r i en c eo fp eop l ew i thd em en t i aandth e i rc a r eg iv e r s ”(P ro roke ta l . ,2013 ,p . E675 ) . Th eexp e r i en c e so fmyG r andm aandAun ta r er e f l e c t edinm anyo fth es tudy f ind ing sd i s cu s s edthu sf a rinth i sch ap t e r .S im i l a rtoICPWDinth eBough twoode ta l . (2011 )s tudy ,myG r andm aandAun tbo thsp en ts ign i f i c an tamoun t so ft im einth eho sp i t a l 69   wh enmyG r andp aw a sadm i t t ed ,a sth eyo f t enf e l tth a th i sn e ed sw e r eno tb e ingm e t .In m anyc a s e s ,h i sn e ed sw e r eno tm e t ,b e c au s es t a f fw e r eno tf am i l i a rw i thh i sh i s to ryo rhow toin t e rp r e th i sb eh av iou r s .Th er epo r t edf e e l ingo flon e l in e s sw a sc e r t a in lysh a r edbymy G r andm aandAun tw i tho th e rICPWDinth es tud i e s .Th ecommonandsh a r edexp e r i en c e s o fmyf am i ly ’ sl iv edexp e r i en c eandICPWDinth er ev i ew eds tud i e sd emon s t r a t e sth a tth e ch a l l eng e sandn e e d sr epo r t edinth el i t e r a tu r ea r e ,inf a c t ,ar e a l i tyfo rC an ad i anICPWD . Th i sr e a l i tyemph a s i z e sth en e edfo rag r e a t e rund e r s t and ingo fth e s el iv edexp e r i en c e sby PCP sino rd e rtob e s tsuppo r tICPWDinp r im a ryc a r eu s ingap e r sonc en t r edapp ro a ch . In fo rma lCa r eg iv e rA s s e s sm en t O fth e30a r t i c l e sandgu id e l in e sr ev i ew ed ,on econ s en su sr epo r tp e r t a in edto c a r eg iv e ra s s e s sm en t .Th eF am i lyC a r eg iv e rA l l i an c e(2006 )a s c e r t a in edth a t“ e s t ab l i sh ing c a r eg iv e ra s s e s sm en ta sab a s i ccompon en to fp r a c t i c ea c ro s sc a r es e t t ing s w i thfo rm a l r e cogn i t iono fc a r eg iv ingf am i l i e sandth ego a lo fs t r eng th en ingth em c a l l sfo ra fund am en t a lch ang eo fth ink inginpo l i cyan dp r a c t i c e ”(p .1 ) .Ino rd e rtoen cou r ag ec a r e p rov id e r stoin co rpo r a t ea s s e s sm en to fin fo rm a lc a r eg iv e r sin top r a c t i c eandn a r rowth e r e s e a r ch p r a c t i c eg ap ,th eF am i lyC a r eg iv e rA l l i an c e(2006 )d ev e lop edacon s en su sr epo r t onc a r eg iv e ra s s e s sm en tb a s edonexp e r top in ion so fnum e rou sh e a l thc a r el e ad e r s .Th e r epo r tp rov id e sbo thp r in c ip l e sandgu id e l in e sth a th e a l thc a r ep rov id e r sc ana s s im i l a t ein to th e i rp r a c t i c e .Inth egu id e l in e s ,th eF am i lyC a r eg iv e rA l l i an c e(2006 )r e comm end s a s s e s s inga l lid en t i f i edc a r eg iv e r s ,con s id e r ingp a t i en t sandc a r eg iv e r sa sdy ad s ,t a i lo r ing a s s e s sm en tandin t e rv en t ion stoth ec a r eg iv ingcon t ex t ,andc l e a r lycommun i c a t ingth e r e a son sfo ra s s e s sm en ttoth ec a r eg iv e r .Fu r th e r ,i ti ssugg e s t edth a tag lob a la s s e s sm en t , 70   gu id edbyacon c ep tu a lf r am ewo rk ,shou ldb ep e r fo rm eda tth eb eg inn ingo fe a chc a r eg iv ing jou rn eyandwh en ev e rt r an s i t ion so c cu ra sp a r to fth ec a r eg iv ingjou rn ey . Th egu id e l in e sinth er epo r tw e r eno tg r ad edfo rqu a l i ty .A l thoughsuppo r t ing l i t e r a tu r ew a su s edth ro ughou tth er epo r t ,r e comm end a t ion sinth egu id e l in e sa r ein fo rm ed bycon s en su so fop in ionandth e r e fo r eth es t r eng tho fth er e comm end a t ion si sd im in i sh ed . D e sp i t eth es t a t edl im i t a t ion s ,th er epo r tp ropo s e ss a l i en tp r in c ip l e sandc l e a r r e comm end a t ion sth a tPCP sc anu s etoadd r e s sin fo rm a lc a r eg iv e rn e ed sandgu id eth e s e l e c t iono fsuppo r t iv ein t e rv en t ion s . P rov id ing‘Road s id eA s s i s tan c e ’ :HowE f f e c t iv eA r eP r ima ryCa r eBa s ed In t e rv en t ion s? In t e rv en t ion b a s edr e s e a r chs tud i e scon t r ibu t etoth efound a t iono fev id en c e b a s ed p r a c t i c ebysub s t an t i a t ingth ee f f i c a cyo fsp e c i f i cin t e rv en t ion s(G rov e ,Bu rn s ,&G r ey , 2013 ) .S id an iandB r ad en(1998 )con s id e r edin t e rv en t ion stob e“ t r e a tm en t s ,th e r ap i e s , p ro c edu r e s ,o ra c t ion simp l em en t edbyh e a l thp ro f e s s ion a l stoan dw i thc l i en t s ,ina p a r t i cu l a rs i tu a t ion ,tomov eth ec l i en t s ’cond i t iontow a rdd e s i r edh e a l thou t com e sth a ta r e b en e f i c i a ltoth ec l i en t s ”(p .8 ) .P r im a ryc a r e b a s edin t e rv en t ion sfoundinth el i t e r a tu r e a im eda timp rov ingth eh e a l tho fin fo rm a lc a r eg iv e r sa r ev a r i ed .Su chin t e rv en t ion sr ang e f romen su r ingknow l edg e sh a r ingb e tw e enth ePCPandth ec l i en tr eg a rd ingav a i l ab l e commun i tyr e sou r c e stoth einvo lv em en to famu chmo r ecomp l exco l l abo r a t iv emod e lth a t in c lud e samu l t id i s c ip l in a ryh e a l thp ro f e s s ion a lt e amandcommun i tys e rv i c ep a r tn e r s . D e sp i t eth er e l a t iv eabund an c eo fc a r eg iv e randd em en t i ac a r el i t e r a tu r eav a i l ab l e ,th e r ea r e al im i t ednumb e ro fs tud i e sp e r t a in ingsp e c i f i c a l lytop r im a ryc a r e b a s edin t e rv en t ion s . S in c ePCP so f t enh av ef r equ en tcon t a c tw i thICPWD ,ac r i t i c a ls t epinan sw e r ingth e 71   r e s e a r chqu e s t iono fth i sl i t e r a tu r er ev i ewinvo lv e sr ev i ew ingandc r i t i c a l lyan a ly z ings tud i e s th a th av einv e s t ig a t edp r im a ryc a r e b a s edin t e rv en t ion s .Fo rth epu rpo s eo fth i sr ev i ew ,th e s e a r t i c l e sw i l lb eo rg an i z edandd i s cu s s eda c co rd ingtoth etyp ein t e rv en t ions tud i ed : p sy cho so c i a l ,edu c a t ion a l ,andco l l abo r a t iv ec a r e . P sy cho so c ia lin t e rv en t ion s .Ou to fth e10in t e rv en t iona r t i c l e sr ev i ew ed ,two ind iv idu a lr andom i z edcon t ro l l edt r i a l s(RCT s )andon esy s t em a t i cr ev i ewex am in edth e e f f e c t so fp sy cho so c i a lin t e rv en t ion sonspou s a lICPWD .Inth ef i r s ts tudy ,amu l t i c en t r e RCT ,Rod r igu e zS an ch e ze ta l .(2012 )a t t emp t edtod e t e rm in ewh e th e rap sy cho log i c a l in t e rv en t ioninth econ t ex to fp r im a ryc a r eimp rov edth em en t a lh e a l tho fICPWD .Th es tudy tookp l a c eb e tw e enJu ly2008andNov emb e r2009a ttwop r im a ryc a r es i t e sinS a l am an c a , Sp a in .U s ingcon s e cu t iv es amp l ing ,125c a r eg iv e r sw e r er andom i z eda f t e rs c r e en ingto e i th e rth ein t e rv en t iong roup(whop a r t i c ip a t edine igh tcogn i t iv eb eh av iou r a lg roup s e s s ion s )o rcon t ro lg roup s(whor e c e iv edu su a lc a r e )a ta2 :1r a t io .U su a lc a r econ s i s t edo f m ed i c a lc a r e ,edu c a t ionabou tb a s i cc a r e( i . e .f a l l sp r ev en t ion ,nu t r i t ion ) ,andcoo rd in a t iono f sp e c i a l i s tc a r eandso c i a ls e rv i c e swh i chw a sp rov id edbyg en e r a lp r a c t i t ion e randnu r s e sin p r im a ryc a r ec en t r e s .I tw a sno t edth a tICPWDd idno tcommon lyr e c e iv ead equ a t esuppo r t w i th inth ep r im a ryc a r ec l in i c ,p a r t i cu l a r lyi fth eICPWDw a sno tap a t i en to fth ePCP .Th e in t e rv en t ion sw e r ed e l iv e r edbyap sy cho log i s ta sw e l la sag en e r a lp r a c t i t ion e ro rnu r s ef rom th ep r im a ryc a r ec l in i c . Ano t ab l es t r eng tho fth es tudyin c lud edth eu s eo fv a l id a t eds e l fr epo r t ed qu e s t ionn a i r e stoob t a inou t com ed a t a ,wh i chenh an c edth econv e rg en tv a l id i tyo fth es tudy . Th ev a l id a t edandr ep l i c a t ed12i t emv e r s iono fth eG en e r a lH e a l thQu e s t ionn a i r e(GHQ 12 ) (Mon t a z e r ie ta l . ,2003 )w a su s edtom e a su r eth ec a r eg iv e r ’ sp e r c ep t ion so fth e i rm en t a l 72   h e a l tha sap r im a ryou t com e .S e cond a ryou t com e s(d y s fun c t ion a lthough t s ,QOL ,and bu rd en )w e r em e a su r edu s ingth eDy s fun c t ion a lThough t sabou tC a r eg iv ingQu e s t ionn a i r e (Mono to r io ,Lo s ad a ,I z a l ,& M á rqu e z ,2009 ) ,Ru i zandB a c a ’ s(1993 )Qu e s t ionn a i r e ,andth e Sho r tZ a r i tBu rd enIn t e rv i ew(B éd a rde ta l . ,2001 ) ,r e sp e c t iv e ly .S t a t i s t i c a l lys ign i f i c an t imp rov em en t sw e r efoundinr e l a t iontody s fun c t ion a lthough t sabou tc a r eg iv ing(p=.01 ) , a sw e l la sw i th intwodom a in so fth eGHQ 12 :cogn i t ionandphy s io log i c a l(p=.04 )and g en e r a lw e l f a r e(p=.01 ) .How ev e r ,nos ign i f i c an timp rov em en t sw e r ed emon s t r a t edin r e l a t iontoQOLo rbu rd en .A sar e su l to fth e s ef ind ing s ,th i sin t e rv en t ionc anno tb e r e comm end edini so l a t iontoimp rov eth eg en e r a lw e l l b e ingo fin fo rm a lc a r eg iv e r s (Rod r igu e z S an ch e ze ta l . ,2012 ) .Anoth e rl im i t a t iono fth i ss tudyi sth eab s en c eo ffo l low upa f t e rth es tudy ’ scomp l e t iontod e t e rm in eanylong t e rme f f e c t iv en e s so fth ein t e rv en t ion . AG e rm anRCTby M enne ta l .(2012 )comp a r edth r e ecoun s e l l ingandsuppo r t in t e rv en t ion so fd i f f e r en tin t en s i t i e stoth ep rov i s iono fu su a lc a r eino rd e rtod e t e rm in e wh e th e rth ein t e rv en t ion simp a c t edt im ingo fnu r s inghom ep l a c em en to fp a t i en t sw i th d em en t i a .Th i sth r e e a rmc lu s t e r RCTinvo lv edal a rg es amp l es i z eo f390ind iv idu a l sw i th d em en t i aag ed65y e a r so ro ld e ra sw e l la sth e i rin fo rm a lc a r eg iv e r s .Th ein t e rv en t ion in c lud edth et r a in ingo ff am i lyphy s i c i an sind em en t i ac a r eandth e i rsub s equ en tin o f f i c e coun s e l ingandr e f e r r a l stosuppo r tg roup sfo rc a r eg iv e r s .Th elongt e rme f f e c t so fth e in t e rv en t io nw e r ea s s e s s edov e rafou r y e a rp e r iod ,am a rk eds t r eng tho fth es tudy .A f t e rtwo y e a r s ,12%o fth ep a r t i c ip an tp a t i en t sh adb e ent r an s f e r r edtor e s id en t i a lc a r ewh i l e66%s t i l l l iv eda thom e .Fou ry e a r sl a t e r ,24%o fth ep a r t i c ip an tp a t i en t sh adb e enin s t i tu t ion a l i z edand on ly39%r em a in eda thom e(M enne ta l . ,2012 ) .Th e s ef ind ing ssuppo r te a r l i e rcon t en t ion s th a tth ein ab i l i tyo fth eICPWDtocon t inu ec a r ingfo rth ec a r er e c ip i en ti scong ru en tw i th 73   th ebu rd ena s so c i a t edw i thth ep rog r e s s iv en a tu r eo fd e m en t i asymp tom s . Ov e r a l l ,M enne ta l .(2012 )foundnos ign i f i c an td i f f e r en c e sb e tw e enth ein t e rv en t ion andcon t ro lg roup sr eg a rd ingth et im ingo fr e s id en t i a lc a r ep l a c em en ta ttwoandfou ry e a r s (p=0 .25andp=0 .71 ,r e sp e c t iv e ly ) .S im i l a r ly ,d e sp i t ead j u s t ingfo rcon found ing d emog r aph i cv a r i ab l e s ,s e cond a ryou t com e ssu cha scogn i t iv efun c t ion ingandADL so fth e p a t i en t s ,c a r eg iv e rbu rd en ,andQOL ,nos ign i f i c an td i f f e r en c e sw e r ed emon s t r a t edb e tw e en th ein t e rv en t ionandcon t ro lg roup sa tth etwoandfou ry e a rm a rk s .How ev e r ,i ti simpo r t an t tono t eth a tth er e su l t so fth i ss tudym ayh av eb e enin f lu en c edbys ev e r a lcon found ing va r i ab l e s .Fo rex amp l e ,th e r ew e r eah ighnumb e ro fp a t i en t sinth ee a r lys t ag e so fd em en t i a a tth eb eg inn ingo fth es tudy ,l ik e lya f f e c t ingp r im a ryands e cond a ryou t com e ssu cha s c a r eg iv e rbu rd enandIADLfun c t ion inga sth ec a r er e c ip i en t ’ sn e edfo ra s s i s t an c ei sl e s s . Fu r th e r ,incon t r a s ttoo th e rs tud i e sr ev i ew ed ,in fo rm a lc a r eg iv e rp a r t i c ip an t sinth i ss tudy vo lun t a r i lycho s ewh e t h e ro rno ttou s eth esuppo r t iv ecompon en t so fth ein t e rv en t ion ,su ch a scoun s e l ingandsuppo r tg roup s .A l low ingth es tudyp a r t i c ip an t stochoo s ewh a t in t e rv en t ion sth eyr equ i r e dmo r ea c cu r a t e lym i r ro r edr e a l i s t i cp r im a ryc a r eand t r an s f e r ab i l i tytop r a c t i c e ,thu sp rov id inge l ev a t edex t e rn a lv a l id i tyo fth es tudyf ind ing s (M enne ta l . ,2012 ) . Du r ingth ecomp r eh en s iv el i t e r a tu r es e a r ch ,on lyon esy s t em a t i cr ev i eww a sfound th a tex am in edp r im a ryc a r e b a s edp sy cho so c i a lin t e rv en t ion ssp e c i f i c a l ly .Du etoth ed e a r th o fl i t e r a tu r ew i thr eg a rdtop r im a ryc a r e b a s edc a r eg iv e rin t e rv en t ion s ,th esy s t em a t i cr ev i ew condu c t edbyG r e enwood ,P e lon e ,andH a s s enk amp(2016 )in c lud edon lyfou rr e s e a r ch s tud i e sth a tsyn th e s i z edev id en c efo rth eu s eo fp sy cho so c i a lin t e rv en t ion sfo rin fo rm a l c a r eg iv e r so find iv idu a l sw i the i th e rd em en t i ao rs t rok eing en e r a lp r a c t i c e .A l though 74   c a r eg iv e r so find iv idu a l swhoh adexp e r i en c edas t rok ew e r ein c lud edinth es e a r ch ,th efou r s tud i e sth a tf i tth ec r i t e r i ao fth er ev i ewinv e s t ig a t edICPWDon ly .Twoo fth e s es tud i e s w e r eRCT s .Th eth i rds tudyw a sanonequ iv a l en tcon t ro lg roupt r i a landth efou r thw a s d e f in eda san“un con t ro l l edb e fo r eanda f t e rs tudy ”(G r e en woode ta l . ,2016 ) .Th eau tho r s u s edKm e t ,L e e ,andCook ’ s(2004 )qu a l i tya s s e s sm en tc r i t e r i atoa s s e s sth em e thodo log i c a l qu a l i tyandfoundth a ton lytwoo fth es tud i e sw e r er a t eda s“good ” ,w i thas co r eo f85%o r mo r e(G r e enwoode ta l . ,2016 ) .S tud i e sinc lud edinth er ev i ewm e a su r edc a r eg iv e rou t com e s o fd ep r e s s iv esymp tom s ,emo t ion a landphy s i c a lh e a l th ,c a r eg iv ingch a l l eng e s ,d em en t i a know l edg e ,bu rd en ,so c i a lsuppo r t ,QOL ,andw e l l b e ing .Av a i l ab l eev id en c esugg e s t sth a t th eimp l em en t a t iono fp sy cho so c i a lin t e rv en t ion sinp r im a ryc a r es e t t ing sm ayimp rov e c a r eg iv e rw e l l b e ingandm en t a lh e a l th .How ev e r ,c au t ionw a ssugg e s t edbyth eau tho r s con s id e r ingth a tth er e su l t so fth es tud i e sa sth ee f f e c t sons ev e r a lou t com e sw e r ee i th e rno t s t a t i s t i c a l lys ign i f i c an t(bu rd en ,QOL ,andh e a l ths t a tu s )o rw e r econ t r ad i c to ry(d ep r e s s ion , know l edg eo fd em en t i a ,andc a r eg iv ingcomp e t en c e ) ,andth eon lys tudyth a td id d emon s t r a t es ign i f i c an tr e su l t sw a so fpoo rm e thodo log i c a lqu a l i ty .Th ein s t rum en t su s edto m e a su r eou tcom e sa l sov a r i ed ,m ak ingi td i f f i cu l tfo rth er ev i ewau tho r stocomp a r ea c ro s s s tud i e s .Ano th e rimpo r t an tc au t iontocon s id e ri sth a tth es tud i e sd idno tsp e c i fyth eid e a l t im ingo fth ein t e rv en t ion sw i thr e sp e c ttoth es t ag eo fd em en t i a .D e sp i t eth el im i t a t ion so f th er ev i ew eds tud i e s ,th eau tho r scon c lud edth a t ,ov e r a l l ,p sy cho so c i a lin t e rv en t ion sin g en e r a lp r a c t i c es e t t ing sm ayp rov etob eb en e f i c i a linimp rov ingth ew e l l b e ing ,p e r c ep t ion s o fbu rd en ,andl ev e l so fd ep r e s s ioninICPWD . Edu ca t iona lin t erv en t ion s .Th r e es tud i e sin c lud edinth i sr ev i ewinv e s t ig a t edth e e f f e c t so fp sy cho edu c a t ion a lin t e rv en t ion sonin fo rm a lc a r eg iv e rou t com e s .Inth ef i r s t 75   s tudy ,Bu rn se ta l .(2003 )comp a r edtwo24 mon thp r im a ryc a r eedu c a t ion a lin t e rv en t ion s fo cu s ingone i th e rb eh av iou rm an ag em en to ronb eh av iou rm an ag em en ttog e th e rw i th c a r eg iv e rs t r e s s cop ingm an ag em en t .Inr e spon s etoth el im i t ednumb e ro fp r im a ryc a r e - b a s edin t e rv en t ion sinu s e ,andi s su e sth a tPCP sh av er eg a rd ingd em en t i ac a r eth a th av eb e en d i s cu s s edinth el i t e r a tu r e ,th er e s e a r ch e r sd ev e lop edb r i e fin t e rv en t ion sth a ttookin to a c coun tth et im econ s t r a in t sinh e r en tinPCPp r a c t i c eandth a tc angu id ePCP sc a r eo f p a t i en t sw i thADandth e i rin fo rm a lc a r eg iv e r s .Inth i ss tudy ,167p a t i en t / in fo rm a lc a r eg iv e r dy ad sw e r er e c ru i t edf romth e i rphy s i c i an s ’o f f i c e sandr andom i z edf romp r im a ryc a r es i t e s in M emph i s ,T enn e s s e e ,USA .Bo thg roup sr e c e iv ededu c a t ion a lm a t e r i a l s ,f a c e to f a c e edu c a t iondu r ingp r im a ryc a r eo f f i c ev i s i t sl a s t ing30 60m inu t e s ,tw i c emo n th lyt e l ephon e c a l l sfo rth ef i r s ts ixmon th sandth enmon th lyc a l l sfo rato t a ldu r a t iono f24mon th s .Th e phon ec a l l sw e r em ad etomon i to rth ee f f e c t iv en e s so fc a r eg iv ings t r a t eg i e sth a tw e r e d i s cu s s eddu r ingo f f i c ev i s i t sfo rimp rov ingb eh av iou rm an ag e m en to fth ec a r er e c ip i en t’ s p rob l emb eh av iou r sands t r e s sr edu c t ioninth eICPWD .Anedu c a to r in t e rv en t ion a l i s tw i tha m a s t e r ’ sd eg r e ec a r r i edou tth ein t e rv en t ion s .Ou t com ev a r i ab l e sw e r em e a su r eda tb a s e l in e andth enag a ina ts ixmon th lyin t e rv a l sun t i lato t a ldu r a t iono f24mon th sh ade l ap s ed .Ov e r t im e ,s t a t i s t i c a l lys ign i f i c an tpo s i t iv ech ang e sw e r efoundinr e l a t iontobo thc a r eg iv e rw e l l b e ingandc a r eg iv e rd ep r e s s ion .How ev e r ,asm a l ls amp l es i z eandah igha t t r i t ionr a t e(28% lo s ttofo l lowup )w e r el im i t a t ion so fth i ss tudyr e cogn i z edbyth eau tho r s . Ino rd e rtoev a lu a t eth ee f f e c to fa12 mon thNPgu id edd em en t i ac a r ein t e rv en t ion inap r im a ryc a r es e t t ing ,Fo r t in skye ta l .(2014 )condu c t edasm a l lRCTth a tin c lud ed31 p a t i en t sw i thd em en t i aandth e i rf am i lyc a r eg iv e r sa tth r e ep r im a ryc a r es i t e sinConn e c t i cu t , USA .Tw en tyon ep a r t i c ip a t ingdy ad sw e r er andom lya s s ign edtoth ein t e rv en t iong roup 76   wh i l e10dy ad sw e r er andom lya s s ign edtoth econ t ro lg roup .A l lc a r eg iv e r sinth es tudy und e rw en tf a c e to f a c ein t e rv i ew sa tb a s e l in e ,a ts ixmon th s ,anda t12mon th stoco l l e c t ou t com em e a su r em en t s .Th ein t e rv en t ionu s edd i f f e r sf romo th e rco l l abo r a t iv ec a r emod e l s a sth eNPw a sr equ i r edtoa s s e s ss tudyp a r t i c ip an t sinmon th lyhom ev i s i t sr a th e rth anina c l in i cs e t t ing .Th eNPp rov id edm ed i c a t ionm an ag em en tinco l l abo r a t ionw i thth ePCP , mon th lyhom ev i s i t sfo rth ein t e rv en t iong roup ,andedu c a t ionp e r t a in ingtos t r e s s m an ag em en t ,ex e r c i s ep l an s ,commun i c a t iont e chn iqu e s ,f in an c i a landl eg a lin fo rm a t ion , p r ev en t ionandm an ag em en to fd ep r e s s ionandanx i e ty ,b eh av iou rm an ag em en t ,mob i l i ty m an ag em en t ,p rov id ingp e r son a lc a r e ,andm an ag ingp a r ano i a ,d e lu s ion s ,h a l lu c in a t ion s . Upd a t e sw e r es en tbyth eNPtoth ePCPa f t e re a chv i s i tw i thth es tudyp a r t i c ip an t s .Th e con t ro lg roupr e c e iv edu su a lc a r einth ec l in i cf romth e i rPCP sTh ecompon en t so f‘u su a l c a r e ’inth econ t ex to fth i ss tudyw e r eno tid en t i f i edbyth eau tho r s . M e a su r edc a r eg iv e rou t com e sinth es tudyin c lud edd ep r e s s iv esymp tom s ,wh i ch w e r em e a su r edu s ingth e20 i t emC en t e rfo rEp id em io log i cS tud i e s D ep r e s s ion(CESD ) inv en to ry(R ad lo f f ,1977 ) ,s e l f e f f i c a cy ,m e a su r edw i thth eu s eo ftwoqu e s t ionn a i r e s ,and c a r eg iv e rbu rd en ,m e a su r edw i thth eZ a r i tBu rd enIn t e rv i ew(B éd a rde ta l . ,2001 ) . S ev e r a ll im it a t ion so fth es tudyw e r er e cogn i z edbyFo r t in skye ta l .(2014 ) .F i r s tth e s amp l es i z ew a ssm a l l .S e cond ,th ef a c ton lyon eNPw a sinvo lv edinth ein t e rv en t ionm ay h av ein f lu en c edth er e su l t so fth es tudydu etopo s i t iv er e l a t ion sh ip sth a td ev e lop edb e tw e e n th eNPandth es tudyp a r t i c ip an t s .Th i rd ,th el eng tho fth es tudyw a sno tlongenoughto d e t e c tm e a su r ab l ed e c l in einth ec a r er e c ip i en t sandth e r e fo r eth ee f f e c t iv en e s so fth e in t e rv en t ionth roughs ev e r a ls t ag e so fd em en t i acou ldno tb eev a lu a t ed . 77   A l thoughth ef ind ing so fth i ss tudyd idno tsuppo r timp rov em en tinp a t i en to r c a r eg iv e rou t com e scomp a r edtotho s einth econ t ro lg roup ,bo thth es tudyp a r t i c ip an t sand th ePCP sinvo lv edr epo r t edah ighl ev e lo fs a t i s f a c t ionw i thth ein t e rv en t ion ,b a s edon r e s u l t so fs a t i s f a c t ionsu rv ey s .Th er e s e a r ch e r ss t a t edth a tNP sw i thg e r i a t r i cknow l edg ea r e id e a lh e a l thc a r ep rov id e r stoimp l em en tin t e rv en t ion sa im eda timp rov ingd em en t i ap a t i en t s andth e i rin fo rm a lc a r eg iv e r s .Fu r th e rr e s e a r chw i thl a rg es c a l et r i a l sa r en e ed edtomo r e comp r eh en s iv e lyev a lu a t eth eimp a c to fNP l edp sy cho so c i a lin t e rv en t ion s(Fo r t in skye ta l . , 2014 ) . Inr e spon s etoal a cko fav a i l ab l efo rm a lc a r efo rd em en t i ap a t i en t sandth e i rin fo rm a l c a r eg iv e r sinRu s s i ancommun i t i e s ,G av r i lov ae ta l .(2009 )imp l em en t edas ing l eb l ind p a r a l l e lRCTin Mo s cow ,Ru s s i ath a tex am in edwh e th e rap a r t i cu l a rc a r eg iv e rin t e rv en t ion wou ldimp rov ec a r eg iv e rou t com e ssu cha sQOL ,bu rd en ,andp sy cho log i c a ld i s t r e s s .S ix ty c a r er e c ip i en t / c a r eg iv e rdy ad sw e r er andom i z edtoe i th e rth ein t e rv en t iona rmo fth es tudy(n =30 )o rtoth econ t ro la rm(n=30 ) .N ew lyt r a in edphy s i c i an simp l em en t edth ein t e rv en t ion , wh i chcon s i s t edo ff iv ew e ek lyedu c a t ions e s s ion s ,e a chl a s t ing30m inu t e s .Th er e s e a r ch e r s r e cogn i z edth ein exp e r i en c eo fth ephy s i c i an sa sapo t en t i a ll im i t a t iono fth es tudyg iv enth a t phy s i c i an sh adl im i t edt r a in ingind em en t i ac a r e . Du r ingth ef i r s ts e s s ion ,th ephy s i c i anfo cu s edonc a r eg iv e ra s s e s sm en t .Th e fo l low ingfou rs e s s ion sth encon s i s t edo fedu c a t iona bou td em en t i a ,fu tu r eimp l i c a t ion so f th ed i s e a s e ,t r e a tm en top t ion s ,andt r a in ingonch a l l eng ingb eh av iou r s .Bu rd enw a s m e a su r edu s ingth eZ a r i tC a r e rBu rd enIn t e rv i ew(B éd a rde ta l . ,2001 ),d i s t r e s su s ingth e SRQ20c a r e rp sy cho log i c a ld i s t r e s stoo l(M ar i& W i l l i am s ,1985 ) ,QOLu s ingth e WHOQOLBREFtoo l(Th e WHOQOLG roup ,1998 ) .BPSDandQOLw e r em e a su r edin 78   th ep e r sonw i thd em en t i au s ingth eNP I Q(K au f e re ta l . ,2000 )andth ed em en t i asp e c i f i c h e a l thr e l a t edQOL(DEMQOL ,Sm i the ta l . ,2005 )s c a l e s .Th er e s e a r ch e r sr epo r t eda s t a t i s t i c a l lys ign i f i c an tr edu c t ioninc a r eg iv e rbu rd enandanin c r e a s einc a r eg iv e rQOLin th ein t e rv en t iong roup ;how ev e r ,i tshou ldb eno t edth a tth epo s i t iv ef ind ingw i thr e sp e c tto bu rd enm ayb ear e su l to fatyp eIe r ro r( f a l s epo s i t iv er e su l t )(G av r i lov ae ta l . ,2009 ) .Asa l l o th e rou t com e sd idno th av epo s i t iv er e su l t ss in c eth es tudyw a s“no ts t a t i s t i c a l lypow e r edto d e t e c td i f f e r en c e sinth i ss i z e ”(p .352 )( l e ad ingtotyp eI Ie r ro r s ) ,y e tth ebu rd enou t com e w a spo s i t iv ede sp i t es ev e r a ls t a t i s t i c a lcomp a r i son s ,t h er e s e a r ch e r sf e l tth a tth etyp eIe r ro r m ayh av eo c cu r r ed(G av r i lov ae ta l . ,2009 ) . Co l labo ra t iv eca r ein t e rv en t ion s .Fou rs tud i e sinth i sr ev i ewinv e s t ig a t edth e imp a c to fco l l abo r a t iv ec a r ein t e rv en t ion sonc a r eg iv e rou t com e s .Inth ef i r s ts tudy ,B a s se t a l .(2013 )imp l em en t edaRCTth a tev a lu a t edth ee f f e c t iv en e s so fac a r e coo rd in a t ion p rog r amonimp rov ingin fo rm a lc a r eg iv e rou t com e sov e ra12 mon thp e r iod .Th e in t e rv en t ioncon s i s t edo fanin i t i a la s s e s sm en t ,a c t ionp l an ,andongo ingmon i to r ingand r e a s s e s sm en tund e r t ak enbyah e a l thc a r ecoo rd in a to rwhow a sp a r tn e r edw i thacommun i ty s e rv i c ec a r ecoo rd in a to rf romth eA l zh e im e r ’ sA s so c i a t ion .Th eh e a l thc a r ecoo rd in a to r ’ s p ro f e s s ion a lt r a in ingw a sno tsp e c i f i edinth es tudy .Th ec a r ecoo rd in a to r sa s s i s t edbo thc a r e r e c ip i en t sandc a r eg iv e r sw i thm ed i c a landnon m ed i c a li s su e s ,su cha ss t r a in ,in fo rm a t ion s e rv i c e s ,a c c e s s ingsuppo r t ,m ed i c a t ionm an ag em en t ,andd i s e a s em an ag em en t .A s t and a rd i z edp ro to co lw a sfo l low edw i thcoo rd in a to r scon t a c t ingp a r t i c ip an t sa tl e a s t mon th lyv i at e l ephon e ,m a i l ,o rem a i l .Th es tudys amp l ew a sr e c ru i t edov e r36mon th sf rom D ep a r tm en to fV e te r anA f f a i r s(VA )f a c i l i t i e sa c ro s sth eUSA .Th es amp l ein c lud ed v e t e r an sag ed50y e a r so ro ld e rw i thad em en t i ad i agno s i swhor e c e iv edp r im a ryc a r ef rom 79   th eVA ,whol iv edn e a rach ap t e ro fth eA l zh e im e r ’ sA s so c i a t ion ,andwhoh adanin fo rm a l c a r eg iv e r .S e v enin fo rm a lc a r eg iv e rou t com e sw e r em e a su r ed ,in c lud ing :unm e tn e ed s ;th r e e typ e so fc a r eg iv e rs t r a in( r e l a t ion sh ips t r a in ,phy s i c a ls t r a in ,andro l ec ap t iv i ty ) ;d ep r e s s ion ; andth eu s eo fsuppo r tr e sou r c e s(numb e ro fo th e rin fo rm a lc a r eg iv e r sth a ta s s i s t edth e p r im a ryin fo rm a lc a r eg iv e randu s eo fr e sp i t eo rc a r eg iv e rsuppo r ts e rv i c e s )(B a s se ta l . , 2013 ) .D ep r e s s ionw a sm e a su r edu s ingth eEp id em io log i cS tud i e sD ep r e s s ionS c a l e(Kohou t e ta l . ,1993 )wh i l ea l lo th e rou t com e sw e r em e a su r edu s ingqu e s t ionn a i r e s .S t a t i s t i c a l ly s ign i f i c an td i f f e r en c e sw e r efoundb e tw e enth ein t e rv en t iong roupandcon t ro lg roupfo ra l l s ev enou t com e sa tbo ths ixmon th sanda t12mon th s .B a s edonth epo s i t iv ef ind ing so fth i s s tudy ,th er e s e a r ch e r sh av ep ropo s edth eu s eo fac a r ecoo rd in a t ionp rog r amino rd e rto imp rov eh e a l thou t com e sfo rbo thin fo rm a lc a r eg iv e r sandind iv idu a l sw i thd em en t i a . S in c em anys tud i e sh av efoundth a tc a r eg iv e r sa r ed i s s a t i s f i edw i thin fo rm a t ion r e c e iv edinphy s i c i ano f f i c ev i s i t s ,ands in c emo s tp r ev io u s ly s tud i edc a r eg iv e rin t e rv en t ion s f a i l edtoin c lud ep r im a ryc a r ep rov id e r sa sco l l abo r a to r s ,Fo r t in sky ,Ku l ldo r f f ,K l epp ing e r , andK enyon P e s c e(2009 )condu c t edas tudytot e s tth ee f f i c a cyo fad em en t i ac a r e con su l t a t ionin t e rv en t ionfo rICPWD .Th er e s e a r ch e r sh adhypo th e s i z edth a tf ew e rc a r e r e c ip i en t sinth ein t e rv en t iong roupwou ldb et r an s f e r r edtoar e s id en t i a lc a r ef a c i l i tyth an f romth econ t ro lg roup .Fo r t in skye ta l .(2009 )a l sohypo th e s i z edth a tc a r eg iv e r swou ld exp e r i en c epo s i t iv eou t com e s ,in c lud ingin c r e a s eds e l f e f f i c a cyinb eh av iou rm an ag em en t ands e rv i c eu t i l i z a t ion ,r edu c edbu rd enandd ep r e s s iv esymp tom s ,andd e c r e a s edadv e r s e phy s i c a lh e a l thsymp tom s .Th ein t e rv en t ioninvo lv edana s s e s sm en tth a tin co rpo r a t eda s t and a rd i z eda s s e s sm en ttoo la sw e l la smon th lycon t a c to fth ec a r eg iv e rbyth ec a r e con su l t an t .C a r ep l an sw e r etob ed ev e lop edbyth ec a r econ su l t an tf romth e s et im e so f 80   con t a c t .Th ephy s i c i anwou ldr ev i ewth ep ropo s edc a r ep l an sw i thbo thth ein fo rm a l c a r eg iv e randth ep a t i en tw i thd em en t i adu r ingfo l low upv i s i t s .Th ein t e rv en t ionw a s comp a r edtoth eu su a lc a r econ t ro lg roup .Ov e r a l l ,a l thoughth er e s id en t i a lc a r eadm i s s ion r a t ew a s33%inth econ t ro lg roupcomp a r edto16%inth ein t e rv en t iong roup ,ov e ra12 mon thp e r iodth er e s u l t sd idno tr e a chs t a t i s t i c a ls ign i f i c an c e(p=0 .10 ) .S im i l a r ly ,th es tudy f ind ing sd emon s t r a t ednos t a t i s t i c a l lys ign i f i c an tr e su l t sonanyo fth ef iv es e cond a ry ou t com ev a r i ab l e s . C a l l ah ane ta l .(2006 )imp l em en t edaRCTtot e s tth ee f f e c t iv en e s so faco l l abo r a t iv e c a r emod e ld i r e c t edbycomp r eh en s iv ed em en t i ac a r egu id e l in e stoimp rov eth equ a l i tyo f c a r efo rp a t i en t sw i thADandth e i rin fo rm a lc a r eg iv e r s .P a t i en t sandth e i rc a r eg iv e r sw e r e r andom i z edtoe i th e rth ein t e rv en t iong roup(n=84 )con s i s t in go fon ey e a ro fco l l abo r a t iv e c a r em an ag em en t ,o rtoth econ t ro lg roup(n=69 )whor e c e iv edaugm en t edu su a lc a r ein p r im a ryc a r ep r a c t i c e sin10p r im a ryc a r ec en t r e sinInd i an apo l i s ,Ind i an a ,USA .Th e in t e rd i s c ip l in a ryc a r em an ag em en tt e amw a sl edbyaf am i lyphy s i c i anandanNPw i th exp e r t i s eing e r i a t r i c s .Th eNPa c t eda sth ec a r em an ag e randimp l em en t edth eedu c a t ion a l , b eh av iou r a l ,andg roupex e r c i s ecompon en t so fth ein t e rv en t ion ,a sw e l la sph a rm a co log i c a l t r e a tm en ttot r e a tp rob l emb eh av iou r sinco l l abo r a t ionw i thth ephy s i c i an .Ap sy cho log i s t p rov id edc a r eg iv e rsuppo r tg roups e s s ion sincon jun c t ionw i tho th e rin t e rv en t ion compon en t s . V a r i ab l eou t com e sw e r em e a su r edv i at e l ephon ein t e rv i ew sa tb a s e l in e ,a ts ix ,a t12 , anda t18 mon thfo l lowup .Th er e s e a r ch e r sd emon s t r a t edth a tth ecomp r eh en s iv e co l l abo r a t iv ec a r ein t e rv en t ionr e su l t edins ign i f i c an tb e t t e rm en t sinBPSD ,wh i ch su c c e s s iv e lyd e c r e a s edc a r eg iv e rs t r e s s .Nod i f f e r en c e sw e r efoundb e tw e enth eg roup sin 81   th et im ingo fnu r s inghom ep l a c em en t ,imp rov em en to fp a t i en tcogn i t ion ,o rADL s . How ev e r ,i tmu s tb eno t edth a tbo thg roup sw e r et r e a t edw i thcho l in e s t e r a s einh ib i to r s , cogn i t iv ea s s e s sm en t sw e r ep e r fo rm edov e rth et e l ephon e(wh i chm ayb el e s ss en s i t iv eth a t f a c etof a c ea s s e s sm en t s ) ,andth eh e t e rog en eou ss amp l eh admu l t ip l ecomo rb id i t i e swh i ch m ayh av ea f f e c t ede f f i c a cyo fth eph a rm a co log i c a lt r e a tm en tcho s en(C a l l ah ane ta l . ,2006 ) . As ign i f i c an tf ind ingo fth es tudyw a sth a t ,a t12mon th s ,82 .8%o fth ec a r eg iv e r sinth e in t e rv en t iong roupr a t edth ep a t i en t ’ sp r im a ryc a r ea sgoodo rex c e l l en tcomp a r edtoon ly 55 .9%o fth eu su a lc a r eg roup(p=0 .002 ) .How ev e r ,a t18mon th s( s ixmon th sa f t e r in t e rv en t ioncomp l e t ion ) ,on ly70%o fth ec a r eg iv e r sr a t edth equ a l i tyo fp r im a ryc a r ea s “good ”o r“ ex c e l l en t ”comp a r edto62%inth eu su a lc a r eg roup(p=0 .27 ) .Th i sf ind ing i l lu s t r a t e sth a tco l l abo r a t iv ec a r ein t e rv en t ion sc animp rov eth equ a l i tyo fc a r eand r e l a t ion sh ip sb e tw e enc a r eg iv e r sandPCP s ,s in c eth es a t i s f a c t ionw i thc a r ed e t e r io r a t edon c e th ein t e rv en t ionw a scomp l e t e .Th i si sac ru c i a lcon s id e r a t iona spoo rr e l a t ion sh ip sb e tw e en c a r eg iv e r sandPCP sc anb eas ign i f i c an tb a r r i e rtop rov i s iono fe f f e c t iv esuppo r t .Ano th e r po s s ib l eexp l an a t ionfo rth i sf ind ingi sth a t ,a st im ego e sonandth ed i s e a s ep rog r e s s e s ,th e c a r eg iv e r ’ sp e r c ep t iono fs a t i s f a c t ionw i thth e i rr e l a t ion sh ipw i thth ePCPm aych ang ea sth e c a r eg iv e r ’ sl ev e lo fbu rd enin c r e a s e s . L a s t ly ,V i ck r eye ta l .(2006 )ex am in edth ee f f e c to fad em en t i ac a r em an ag em en t p rog r amonc a r equ a l i ty ,a sw e l la sp a t i en tandc a r eg iv e rou t com e s ,inac lu s t e rRCTov e r12 mon th s .E igh t e enp r im a ryc a r ec l in i c sinS anD i ego ,C a l i fo rn i aw e r er andom i z edtoe i th e ran in t e rv en t iono rcon t ro lg roup .Into t a l ,408p a t i en t sw i thd em en t i aandth e i rin fo rm a l c a r eg iv e r sw e r ein c lud edinth es tudy ,w i th238dy ad sp a r t i c ip a t inga sp a r to fth e in t e rv en t iong roup .Th ein t e rv en t ioncon s i s t edo fac a r em an ag e rp rov id ings t ru c tu r ed 82   a s s e s sm en t s ,d ev e lop ingc a r ep l an s ,r e f e r r a l s ,c a r ecoo rd in a t ionb e tw e enh e a l thc a r e s e rv i c e s ,r egu l a rt e l ephon eo rin hom efo l lowupv i s i t s ,andedu c a t ion a ls em in a r s . C a r eg iv e r sf romth ein t e rv en t iong roupr epo r t edin c r e a s edcon f id en c einc a r eg iv ing a tth e i r12and18 mon thfo l lowup ,wh i l eso c i a lsuppo r tandm a s t e ryinth i sg roupw e r e s ign i f i c an t lyimp rov edcomp a r edtoth econ t ro lg roupa t18mon th s .Fu r th e rmo r e ,d e sp i t e r edu c edr epo r t so fh e a l th r e l a t edQOLinth ein t e rv en t ionandcon t ro lg roup s ,l e s sd e c l in e w a sev id en tinth ein t e rv en t iong roup . C l in i ca lP ra c t i c eGu id e l in e s C l in i c a lP r a c ti c eGu id e l in e sa r eev id en c e b a s eds t a t em en t sandr e comm end a t ion s d ev e lop edth roughsy s t em a t i cr ev i ew so fr e l ev an tl i t e r a tu r e ;th eya r ein t end edtosuppo r t p r a c t i t ion e r sinth e i rd e c i s ion m ak ingandtoenh an c ep a t i en tc a r e(Th eN a t ion a lA c ad emyo f S c i en c e s ,2011 ) .Un fo r tun a t e ly ,th el i t e r a tu r es e a r chfo rth i sr ev i ewf a i l edtop rodu c eany gu id e l in e ssp e c i f i ctoin fo rm a lc a r eg iv e r s ;how ev e r ,fou rgu id e l in e sr e l a t edtod em en t i ac a r e w e r eid en t i f i edth a te a chcon t a inas e c t iononc a r eg iv e rsuppo r tandin t e rv en t ion s .Th e gu id e l in e sa r esumm a r i z edandan a ly z edco l l e c t iv e lys in c em anyo fth er e comm end a t ion s w e r es im i l a randin c lud edbo tha s s e s sm en tandin t e rv en t ionr e comm end a t ion s .A l lfou r gu id e l in e sb a s edth e i rr e comm end a t ion sonasy s t em a t i cr ev i ewo fc a r eg iv e rl i t e r a tu r e , fo l low edbyexp e r tcon s en su s .Th eg r ad eands t r eng tho fsuppo r t ingev id en c ew a sc l e a r ly s t a t edina l lfou rgu id e l in e s .Un fo r tun a t e ly ,du etoth el im i t edamoun to fh ighqu a l i ty ev id en c eav a i l ab l eth roughw e l l ex e cu t edRCT sandsy s t em a t i cr ev i ew s ,th es t r eng tho fth e r e comm end a t ion sinth egu id e l in e si sno ta ss t ronga sth eym igh tb eo th e rw i s e . Th ef i r s tgu id e l in er ev i ew edi sano ld e rC an ad i angu id e l in e ,pub l i sh edin1999byth e C an ad i an M ed i c a lA s so c i a t ion(CMA ) .Th i sgu id e l in ew a sd ev e lop edw i thp a r t i cu l a r 83   con s id e r a t iono fth ep r im a ryc a r econ t ex t .R e comm end a t ion sin c lud eth ep rov i s iono f con t inu i tyo fc a r efo rbo thth ep a t i en tandc a r eg iv e rf romd i agno s i stod e a th .Add i t ion a l ly , PCP sa r een cou r ag edtoen su r eth a tr egu l a rc l in i cappo in tm en t sa r esch edu l edw i thbo thth e p a t i en tandc a r eg iv e rtog e th e r ,inadd i t iontoappo in tm en t sfo rth ec a r eg iv e ra lon e .Th e r e comm end edf r equ en cyo fsu chappo in tm en t si sno tid en t i f i edhow ev e r ,l e av ingth ePCP w i thar a th e rnonsp e c i f i cr e comm end a t ion .Th eCMAsugg e s t sa s s e s s ingc a r eg iv e r sfo r so c i a lsuppo r tn e ed sandav a i l ab i l i ty ,cop ings t r a t eg i e s ,f in an c i a landl eg a li s su e s ,and o f f e r ingh e a l thp romo t ion ,t r e a tm en t ,andr e f e r r a l sa sn e c e s s a ry .U t i l i z a t iono fapp rop r i a t e commun i tys e rv i c e sfo rth ep a t i en tw i thd em en t i ai sr e comm end ed . Th eSp an i shN a t ion a lH e a l thS e rv i c e(SNS )pub l i sh edth es e condgu id e l in eonth e Comp r eh en s iv eC a r eo fP eop l ew i thA l zh e im e r ’ sD i s e a s eandO th e rD em en t i a sin2011 .Th e SNS(2011 )id en t i f i e sana f f i l i a t edA l zh e im e r ’ sd i s e a s esuppo r to rg an iz a t iona sav a lu ab l e r e sou r c etowh i chPCP sc anconn e c tc a r eg iv e r sfo rapp rop r i a t ecoun s e l ing ,edu c a t ion ,and suppo r t iv es e rv i c e s .Ar e comm end a t ioni sm ad etoe s t ab l i sha“w e l com ep rog r am ”fo r p a t i en t sw i thd em en t i aandth e i rc a r eg iv e r s ,tob eo f f e r edbya nin t e rd i s c ip l in a ryp r im a ry c a r et e amina s so c i a t ionw i thana f f i l i a t edsuppo r t iv ed em en t i ao rg an i z a t ion .Du r ingth eend s t ag eo fd em en t i a ,th eSNS(2011 )sugg e s t sco l l abo r a t ingw i thp a l l i a t iv ec a r es e rv i c e sin o rd e rtop rov id ec a r eg iv e r sw i thg r i e fanden do fl i f esuppo r t iv ein t e rv en t ion s .Th e s e r e comm end a t ion sexp l i c i t lysuppo r tth ef a c i l i t a t iono fad ap t a t iondu r ingt r an s i t ion sf a c ed th roughou tth ec a r eg iv ingjou rn ey ,ak eys t r eng tho fth e s ep a r t i cu l a rgu id e l in e s . Th eth i rdgu id e l in ew a sw r i t t enin2006byth eS co t t i shIn t e r co l l eg i a t eGu id e l in e s N e two rk(S IGN ) .Inadd i t iontoth eon er e comm end a t ionth a tedu c a t ionshou ldb ebo th p a t i en t -andc a r eg iv e r c en t r ed ,S IGN(2006 )o f f e r sp r a c t i c epo in t sth a tw e r eb a s edonth e 84   c l in i c a lexp e r i en c eo fth egu id e l in es t e e r ingcomm i t t e e .Th r e ep r a c t i c epo in t sw e r ep rov id ed , in c lud ingm a in t a in inge f f e c t iv ecommun i c a t ionw i thc a r eg iv e r s ,o f f e r ingin fo rm a t ionto c a r eg iv e r sinadv an c eo fth en ex ts t ag eo fth ed i s e a s e ,ando f f e r ingsuppo r tandin t e rv en t ion s th roughou tth ec a r eg iv ingjou rn ey .A l thoughth e s esugg e s t ion sa r eop in ion b a s ed ,th eydo r e f l e c twh a th a sb e ensugg e s t edino th e rl i t e r a tu r e(Ro s e&Lop e z ,2012 ) .Th eu t i l i z a t iono f an t i c ip a to rygu id an c einaf a i r lyp r ed i c t ab l ed i s e a s ep ro c e s sm ayd emon s t r a t es ign i f i c an t b en e f i ttoc a r eg iv e r so fd em en t i ap a t i en t sinas im i l a rf a sh iontoth eb en e f i ti tp rov id e sto p a r en t sth roughth e i rch i ld r en ’ sd ev e lopm en t . Th efou r thandf in a lgu id e l in er ev i ew edw a saco l l abo r a t iv ee f fo r tb e tw e enth e N a t ion a lCo l l abo r a t iv eC en t r efo rM en t a lH e a l thandth eN a t ion a lIn s t i tu t efo rH e a l thand C l in i c a lEx c e l l en c e(N ICE ) .Th i sgu id e l in ei sen t i t l ed :D em en t i a :AN ICE–SC IEGu id e l in e onSuppo r t ingP eop l ew i thD em en t i aandTh e i rC a r e r sinH e a l thandSo c i a lC a r e( N ICE , 2011 ) .On es e c t ioninth i sgu id e l i n ep e r t a in stoth eimp l em en t a t iono fc a r eg iv e r in t e rv en t ion ssp e c i f i c a l ly .R e comm end a t ion sin c lud ea s s e s s ingc a r eg iv e r sth roughou tth e d i s e a s ep ro c e s sandth enth roughou tc a r eg iv ingt r an s i t ion s ,in c lud ingr e s id en t i a lc a r e p l a c em en to fth ep e r sonw i thd em en t i a .Ag a in ,th ep a r t i cu l a rf r equ en cyo fr e comm end ed a s s e s sm en ti sno tid en t i f i ed .Th ein c lu s iono fv a r iou st a i lo r edin t e rv en t ion sinc a r eg iv e rc a r e p l an si sa l sor e comm end edinth egu id e l in e ,in c lud ingar e comm end a t ionth a td i r e c t invo lv em en to fth ep e r sonw i thd em en t i ashou ldb econ s id e r edwh enid en t i fy ingapp rop r i a t e suppo r t iv ein t e rv en t ion s .Th i sr e comm end a t ioni ssuppo r t edbyth eSNS(2011 )gu id e l in e , wh i chs t a t e sth a tmu l t i compon en tin t e rv en t ion st endtob emo s te f f e c t iv einsuppo r t ingand m e e t ingth en e ed so fc a r eg iv e r s .A sar e su l t ,th eyr e comm endimp l em en t ingsk i l l st r a in ing , edu c a t ion ,andp sy cho so c i a lsuppo r tw i th inth ec a r eg iv e rc a r ep l an . 85   Th ea s s e s sm en to fth el ev e lo fp e r c e iv edbu rd en ,andth eimp l em en t a t iono f app rop r i a t ein t e rv en t ion s ,i sr e co mm end edintwogu id e l in e s(CMA ,1999 ,SNS ,2011 )w i th th eSNSsugg e s t ingth eu s eo fv a l id a t eds c r e en ingtoo l ssu cha sth eZ a r i tBu rd ens c a l e (B éd a rde ta l . ,2001 )toqu an t i fybu rd en .Th e s eCMA(1999 )andSNS(2011 )gu id e l in e sa l so r e comm endedu c a t ingth ec a r eg iv e rabou tm an i f e s t a t ion so fd em en t i aino rd e rtob e t t e r p r ep a r ec a r eg iv e r sfo rth efu tu r e .A l lfou ro fth egu id e l in e sr e comm endt a i lo r ingin fo rm a t ion andin t e rv en t ion stoth ep e r c e iv edn e ed so fc a r eg iv e r s .Inadd i t ion ,th r e egu id e l in e ss t a t eth a t th eid en t i f i c a t iono fm en t a lh e a l thi s su e sandsub s equ en tt r e a tm en tw i thp sy cho th e r apy , ph a rm a co log i c a lth e r apyo rsp e c i a l i s tr e f e r r a l sshou ldb econ s id e r ed(CMA ,1999 ;N ICE , 2011 ;SNS ,2011 ) . Insumm a ry ,a l lfou ro fth egu id e l in e sa cknow l edg eth eimpo r t an c eo fr e cogn i z ing c a r eg iv e rn e ed sa longw i ththo s eth ep a t i en tw i thd em en t i a .Th einh e r en tn e edfo rad equ a t e commun i c a t ionb e tw e enPCP sandc a r eg iv e r si ss im i l a r lyh igh l igh t ed .Th eimp l em en t a t ion o fc a r eg iv e rsuppo r tth rougha s s e s sm en t ,edu c a t ion ,andp e r son a l i z edin t e rv en t ion si s r e comm end edina l lo fth egu id e l in e s ;how ev e r ,th et im inginwh i cha s s e s sm en t sand in t e rv en t ion sshou ldb eimp l em en t edth roughth ec a r eg iv ingjou rn eyi sl a ck ingina l lfou r gu id e l in e s .Ino rd e rtod ev e lopcomp r eh en s iv e ,u s e fu l ,ande f f e c t iv ec l in i c a lp r a c t i c e gu id e l in e ssp e c i f i ctoICPWD ,th e r ei sacomp e l l ingn e edfo rth eimp l em en t a t ionand pub l i c a t iono ffu r th e remp i r i c a lc a r eg iv ingr e s e a r chw i thex c e l l en tm e thodo log i c a lqu a l i ty . Th equ a l i t a t iv eandqu an t i t a t iv er e s e a r chh a sb e enr e v i ew edandan a ly z edino rd e rto an sw e rth er e s e a r chqu e s t ion .S in c ePCP sa r einap r im epo s i t iontop rov id esuppo r tto in fo rm a lc a r eg iv e r s ,ev id en c ew a sex am in edth a tp e r t a in edtom e ch an i sm so fsuppo r tth a t   c anb ep rov id edw i th inap r im a ryc a r es e t t ing .Thefo l low ingch ap t e rw i l ld i s cu s sth e f ind ing sind e t a i l . 86 87   Chap t e r4:D i s cu s s ion Th en eg a t iv ephy s i c a l ,p sy cho log i c a l ,f in an c i a l ,andso c i a le f f e c t sa s so c i a t edw i th in fo rm a lc a r eg iv ingc anb e com eov e rwh e lm ingfo rICPWD .L i l lye ta l .(2012 )s t a t edth a t ,a s th eh e a l thc a r esy s t emg r e a t lyd ep end sonth ec r i t i c a lcon t r ibu t ion so fICPWD ,anin c r e a s ed fo cu sonth e s ec a r eg iv e r s ,andonc a r eg iv e rsuppo r tbyPCP sandh e a l thsy s t em s ,n e ed sto o c cu r .Afo cu sonICPWDm ays an c t ionsuppo r t swh i chp romo t ec a r eg iv e rw e l lb e ing “ r a th e rth anr e so r t ingtoco s t lyp a t i en tc a r efo rc a r eg iv e r swhoh av er e a ch edth epo in to f bu rnou tandc a r er e c ip i en t swhoh av eb e enin s t i tu t ion a l i z ed ”(L i l lye ta l . ,2012 ,p .103 ) .In o rd e rtob eab l etop rov id eth emo s tapp rop r i a t esuppo r tandin t e rv en t ion stoICPWD ,PCP s n e edtomo r ec l e a r lyund e r s t andth e s ec a r eg iv e r s ’n e ed s .Inp a r t i cu l a r ,th eyn e edtob eaw a r e o fwh a td r aw sc a r eg iv e r stop rov id ec a r e ,wh a tch a l l eng e sth eym ayf a c e ,andwh a ts e rv i c e s a r econ s id e r edn e c e s s a rywh i l ec a r ingfo rap e r sonw i thd em en t i a .Byid en t i fy ingc a r eg iv e r s ’ n e ed sandexp e r i en c e s ,r e l ev an tande f f e c t iv ein t e rv en t ion sc anb ee s t ab l i sh edtob e t t e r suppo r tth em(K a r l s sone ta l . ,2015 ;L eonge ta l . ,2001 ) . D i s cu s s iono fth ef ind ing sf romCh ap t e rFou rw i l ls e rv etoin fo rms t r a t eg i e sth a t PCP sc animp l em en tw i th inp r im a ryc a r es e t t ingsino rd e rtop rov id esuppo r ttoICPWD . Th ero l eo fNP ssp e c i f i c a l lyw i l lb ed i s cu s s edw i thav i ewtoh igh l igh tth eun iqu ero l eo f NP sandth econ t r ibu t ion sth eyc anm ak etoICPWD ,th e i rc a r er e c ip i en t s ,andh e a l thc a r e sy s t em sa l ik e(S ang s t e r Go rm l ey ,2014 ) .R e comm end a t ion sfo rPCPp r a c t i c e ,edu c a t ion , andr e s e a r ch ,w i thap a r t i cu l a rfo cu sonth eNPro l e ,w i l lb ed i s cu s s eding r e a t e rd e t a i lin Ch ap t e rS ix . 88   N e ed sandExp e r i en c e so fICPWD : Mapp ingth eCa r eg iv ingJou rn ey A l thoughth es tud i e stookp l a c eind i f f e r en ts e t t ing sandfo cu s edonth ec a r eg iv e r ’ s exp e r i en c e sdu r ingd i f f e r en ts t ag e so fd em en t i a ,s ev e r a lr e cu r r ingth em e sandsub th em e s w e r eid en t i f i edinth el i t e r a tu r e .Twoo fth er ev i ew eds tud i e sfo cu s edonpo s i t iv ea sp e c t so f c a r eg iv ing ;how ev e r ,th em a jo r i tyo fth el i t e r a tu r ed i s cu s s edn eg a t iv eexp e r i en c e sandunm e t n e ed s ,thu sh igh l ig h t ingg ap sinc a r eg iv e rc a r eandth en e edtod ev e lopinnov a t iv eand e f f e c t iv ein t e rv en t ion sinp r im a ryc a r es e t t ing s(H in ton ,Ch amb e r s ,V e l á squ e z ,Gon z a l e z ,& H a an(2006 ) .Fou rm a jo rth em e sands ev e r a lsub th em e sem e rg edf romsyn th e s i so fth e l i t e r a tu r einth i sr ev i ew .Th efou rm a jo rov e r a r ch ingth em e sw e r e :th eh e a l thsy s t em ;f am i ly andcommun i ty ;r e l a t ion sh ipw i thth ec a r er e c ip i en t ;andp e r son a ljou rn ey .Th e s eth em e s w e r ead ap t edf romth em e sth a tem e rg edf romas tudyby W i e r sm a ,S am e sh im a ,andDupu i s (20 14 ) . Th eh ea l thsy s t em.Th ef i r s tth em eadd r e s s e si s su e sth a tICPWDr a i s edinth e r ev i ew eds tud i e sr eg a rd ingd i agno s i s ,edu c a t ion ,commun i c a t ionb e tw e enPCP sand ICPWD ,t r an s i t ion a lc a r e ,andsuppo r ts e rv i c e s . D iagno s i s .AnICPWDinK a r l s sone ta l . ’ s(2015)s tudys t a t edth a te a r lyd i agno s i si s th emo s timpo r t an ta sp e c to fth ec a r eg iv ingjou rn ey . Wh end i agno s i si sw e l l t im ed , t r e a tm en tc anb ecomm en c edandsuppo r t spu tin top l a c ee a r lyinth et r a j e c to ry ,p r ep a r ing bo thth eICPWDandc a r er e c ip i en tfo rth eup com ingjou rn ey .AnICPWDinK a r l s sone t a l . ’ s(2015 )s tudys im i l a r lyno t edth eimpo r t an c eo fane a r lyd i agno s i sandd e s c r ib edh i s s a t i s f a c t ionwh enh i smo th e rr e c e iv edad i agno s i sp romp t ly :“Sh ego td i agno s ed[d em en t i a ] v e ryqu i ck ly...andth enev e ry th i ngh app en edl ik eth i s( sn ap sw i thh i sf ing e r s ) .V e rysoon 89   th eycon t a c t edhom e c a r e .Hom ec a r ec am ein .W eh adam e e t ing ,w en tth roughh e rn e ed s . Ev e ry th ingwo rk edp e r f e c t ... ”(p .1413 ) . Un fo r tun a t e ly ,du etod en i a lo fth esymp tom so fd em en t i a ,o ranin abi l i tyto r e cogn i z etho s esymp tom s ,m anyin fo rm a lc a r eg iv e r sdono ts e ekd i agno s i sun t i lac r i s i s s i tu a t iono c cu r s ,i . e .wh enth ed eg r e eo fcogn i t iv eo rfun c t ion a limp a i rm en to fth ec a r e r e c ip i en tc annolong e rr em a inigno r edo ra t t r ibu t edtoinno cuou sc au s e s(Ad am s ,2006 ; G a lv ine ta l . ,2005 ) .M anyICPWD whoh adr e a ch edth i spo in tth envo i c edf e e l ing so f f ru s t r a t ion(P ro roke ta l . ,2013 )andm i s t ru s t(T e e l&C a r son ,2003 )tow a rd sth e i rPCPd u e toth ep ro c e s so fob t a in ingad i agno s i sfo rth ec a r er e c ip i en t .Th e s ef e e l ing sw e r ea s so c i a t ed w i thth ep e r c ep t ionth a tPCP sw e r er e lu c t an ttod i agno s ed em en t i a ,c au s ingth eICPWDand c a r er e c ip i en ttos e e ,andr e l ayth e i rs to ryto ,num e rou sPCP sb e fo r ead i agno s i sw a sm ad e (T e e l&C a r son ,2003 ) .Fo rp a t i en t sinru r a lcommun i t i e swhoh av ea c c e s stol im i t edP CP s andsp e c i a l i s t s ,th i sc anh av emu l t ip l eadd i t ion a limp l i c a t ion sfo rbo thth ep a t i en tand ICPWD .Fo rin s t an c e ,th eco s tandemo t ion a landphy s i c a lch a l l eng e sa s so c i a t edw i th t r av e l ingou to ftowntos e esp e c i a l i s t sm ayb et ax ingonbo thth ec a r er e c ip i en tandICPWD . Con s equ en t ly,th eimpo r t an c eo fw e l l t im edd i agno s i sw a ss t r e s s edbyICPWDa sc r i t i c a l s in c ee a r lyd i agno s i sc anl e adtomo r esu c c e s s fu lt r an s i t ion sfo rbo thth eICPWDandth e c a r er e c ip i en t(P ro roke ta l . ,2013 ) . P rov id ingad i agno s i so fap rog r e s s iv eandt e rm in a ld i s e a s em ayp rov ech a l l eng ing fo ranyPCP ,e sp e c i a l lya si timp a c t sno ton lyth ep a t i en tbu ttho s ewhow i l lin ev i t ab ly p rov id ec a r efo rth a tp e r son .Th e con s id e r ab l eimp a c to fad em en t i ad i agno s i si sev id en t w i thK e l so ’ s(2016 )s t a t em en t :" Wh end i agno s inganA l zh e im e r ' s /d em en t i ap a t i en tyoua r e notju s td i agno s ingth eind iv idu a lw i thth ed i s e a s e ;youa r einon es t rok e ,a s s ign inga 90   r em a rk ab lych a l l eng ingn ewl i f e s ty l etoa tl e a s ton em emb e ro faf am i ly ”(p a r a .6 ) .L e a ch andH i ck s(2013 )s t a t eth a tch a l l eng e sa s so c i a t edw i thd e l ay edd i agno s i sh av ea r i s enf rom s ev e r a lf a c to r s ,in c lud ingin f lu en c e sf romPCP s(d em en t i ac a r et r a in ing ,a t t i tud e s ,and con f id en c eind i agno s ing ) ,th ein fo rm a lc a r eg iv e r sth em s e lv e s(d i f f e r ingcu l tu r a lb e l i e f sand poo rr e cogn i t iono fth em an i f e s t a t ion so fd em en t i a ) ,andth es t r u c tu r eo fp r im a ryc a r e .Th e d i f f i cu l tya s so c i a t edw i thp rov id ingsu chad ev a s t a t ingd i agno s i sm ayn ev e rg e te a s i e rfo r PCP s .How ev e r ,edu c a t ionfo rPCP sr eg a rd ingd em en t i ac a r eandd i agno s i s ,a sw e l la s pub l i cedu c a t iona roundsymp tom so fd em en t i a ,m ayimp rov et im e lyd i agno s i s(T e e l& C a r son ,2003 ) . Edu ca t ion.P inqu a r tandSö r en s en(2006 )s t a t eth a timp rov ingth eedu c a t ion p rov id edtoICPWDabou td em en t i aandm a n ag ingsymp tom so fd em en t i aw a sfoundtob e e f f e c t iv einimp rov ingw e l l b e ingandd e c r e a s ingd e p r e s s iv esymp tom sandbu rd en .ICPWD l i s t ededu c a t iona sth emo s ts ign i f i c an tunm e tn e edth eyh adth roughou tth een t i r ec a r eg iv ing jou rn ey(H in tone ta l . ,2006 ;J enn ing se ta l . ,2015 ;K a r l s sone ta l . ,2015 ;L eonge ta l . ,2001 ; L i l lye ta l . ,2012 ;P ro roke ta l . ,2013 ;T e e l&C a r son ,2003 ) .M anyICPWDs t a t edth a tal a ck o fin fo rm a t ionf romPCP sr eg a rd ingd em en t i a ,b eh av iou rm an ag em en t ,ph a rm a co log i c a l m an ag em en t ,p e r son a lc a r e ,andav a i l ab l esuppo r t iv es e rv i c e sw a sacommonexp e r i en c e ; som ec a r eg iv e r sev enr ep o r t edb e ingth eon e swhoh adtoin i t i a t ed i s cu s s ion sw i thPCP s abou tth e i rcon c e rn sandabou td em en t i am an ag em en t(P ro roke ta l . ,2013 ) . M anyICPWDexp e c tth ePCPtoh av eexp e r t i s eabou td em en t i ac a r eandcu r r en t r e sou r c e s( J enn ing se ta l . ,2015 ;K a r l s sone ta l . ,2015 ;P ro roke ta l . ,2013 ) ,y e to f t en p e r c e iv edth ePCPtob el a ck ingknow l edg eo rf e l tth a tin fo rm a t ionp rov i s ionw a sno tc l e a r (P ro roke ta l . ,2013 ) .Th e r ei sad i s t in c tpo t en t i a ltoc lo s eth i sg apbyen su r ingth a tcu r r en t 91   andfu tu r ePCP sa r eed u c a t edonth e s ei s su e sandb e com emo r ep ro f i c i en ta tedu c a t ingand coun s e l ingICPWDabou td em en t i a ,c a r eg iv ing ,andth er e sou r c e sav a i l ab l etoICPWD (H in tone ta l . ,2006 ) . Commun i ca t ionb e tw e enPCPandICPWD .K a r l s sone ta l .(2015 )foundth a t “ in fo rm a t ion ,commun i c a t ion andco l l abo r a t ionw e r econ s id e r edtob ed ep end en ton e s t ab l i sh i ngat ru s t ingr e l a t ion sh ip[w i thPCP s ] ”(p .1413 ) .Ad equ a t ecommun i c a t ion b e tw e enICPWDandth ec a r er e c ip i en t ’ sPCPi simpo r t an ta ta l ls t ag e so fth ec a r eg iv ing jou rn ey .Poo rc ommun i c a t ionc anl e adtoin e f f e c t iv er e l a t ion sh ip sb e tw e enPCP sand ICPWDandap e r c ep t iono fin ad equ a t ep a t i en tc a r e .P e rh ap sth emo s timpo r t an tf ind ingin th el i t e r a tu r ei sth ef a c tth a tmo s tICPWDs imp lyw an ttof e e lsuppo r t edbyPCP s ,f e e lth a t th e i rh a rdwo rkands a c r i f i c ei sb e ingr e cogn i z ed ,andp e r c e iv eth a tth e i rf e e l ing sandn e ed s a r eb e ingv a l id a t ed(L i l lye ta l . ,2012 ,O ’Sh aughn e s sye ta l . ,2010 ;P ro roke ta l . ,2013 ; Sh an l eye ta l . ,2010 ) .O ’Sh aughn e s sye ta l .(2010 )s t a t edth a t ,inth i sr e sp e c t,suppo r tg roup s c ans e rv ea sak eysou r c eo fv a l id a t ionfo rICPWDandc ansupp l em en tth ee f fo r t so fth e PCP sinth i sr eg a rd .Wh a ti smo r e ,ICPWDinth eSh an l ey(2011 )s tudyf e l tth a tsuppo r t g roup sw e r ep a r amoun ttom e e t ingth e i rn e ed s .Suppo r tg roup sa l l ow edICPWDtocomp a r e th e i rownexp e r i en c e sw i tho th e r sandtog a th e rb en e f i c i a lin fo rm a t ionf romo th e rICPWD ( O ’Sh aughn e s sye ta l . ,2010) .Mo s to fth ep a r t i c ip an t sinth i ss tudyr e c e iv edag r e a td e a lo f a s s i s t an c ef romaw e l l f a c i l i t a t edsuppo r tg roupandf e l tth a tth eg roupw a son eo fth emo s t impo r t an tw ay sinwh i chth e i rn e ed sw e r em e t . T ran s i t iona lca r e .Ac a r er e c ip i en t ’ ss t ayinana cu t eo rlongt e rmc a r ef a c i l i tyc an c au s ein c r e a s eds t r e s sfo rbo thth ec a r er e c ip i en tandICPWD .Th en e edfo radvo c a cyfo rth e c a r er e c ip i en ti scommon .Th eICPWDinK a r l s sone ta l . ’ s(2015 )s tudyr epo r t edth a tm any 92   ho sp i t a ls t a f fs t rugg l edw i thd em en t i ac a r e ,l e av ingICPWDf ru s t r a t ed .S im i l a r ly , Bough twoode ta l .(2011 )foundth a tm anyCALDICPWDsp en tlonghou r sinth eho sp i t a l tot r an s l a t eandtoen su r eth e i rf am i lym emb e rr e c e iv edad equ a t ec a r e .U t i l i z a t iono fth eTop 5S t r a t egy(C l in i c a lEx c e l l en c eComm i s s ion ,2014 )b e fo r eac a r er e c ip i en ti st r an s f e r r edtoa f a c i l i tym ayp r ev en tth ef ru s t r a t ionr epo r t edbyICPWDandc r e a t eab e t t e rexp e r i en c e du r ingt r an s i t ion sinc a r e .Th eTop5S t r a t egyp romo t e sr e cogn i t ionanda cknow l edg em en t o fICPWD ’ sknow l edg eandsk i l l sbyf a c i l i tys t a f fw i thr e sp e c ttoth ec a r er e c ip i en tandc a r e p rov i s ionfo rth ec a r er e c ip i en t(C l in i c a lEx c e l l en c eComm i s s ion ,2014 ;S t rudw i ck ,2009 ) . S e eApp end ixCfo ranex amp l eo fanad ap t a t iono fth eTop5s t r a t egy . Suppo r tS e r v i c e s .M anyc a r eg iv e r sh av er epo r t edas ign i f i c an tn e edfo rs e rv i c e r e f e r r a l s ,y e tth eyo f t ent r av e l eddownalongp a thb e fo r eob t a i n ingth esuppo r tth ey r equ i r ed .J enn ing se ta l .(2015 )s t a t edth a tbu syPCP so f t ena r eno taw a r eo fav a i l ab l e suppo r ts e rv i c e sinth e i rcommun i t i e sno rdoth eya lw ay sh av eth et im etop rov id ein o f f i c e suppo r t iv ein t e rv en t ion s ,su cha scoun s e l l ingo redu c a t ionp rov i s ion .Fu r th e r ,th el i t e r a tu r e sugg e s t sth a tc a r eov e r a l linth i spopu l a t ionr em a in sf r agm en t edandpoo r lycoo rd in a t ed (B a s se ta l . ,2013 ) .On eICPWDr epo r t ed ,“m anyt im e syoun e edat e ame f fo r t ,bu tth e r ei s no tth econn e c t ionb e tw e enth eso c i a lwo rk e r ,th eHom eC a r e ,th edo c to r ,th ewh a t ev e r . Th e r e ’ sno tsom ebodyth a tc anpu ti ta l ltog e th e rfo rth eind iv idu a l ”(Sh an l eye ta l . ,2011 ,p . 330 ) . L i l lye ta l .(2012 )po s i t edth a tc a r eg iv e r so f t enon lyr e c e iv es e rv i c e son c eth eya r e onth ev e rg eo fb e com ingp a t i en t sth em s e lv e sb e c au s eo fth es t r e s sa s so c i a t edw i than un suppo r t edc a r eg iv ingro l e .Th eimpo r t an c eo ft a i lo r ingin t e rv en t ion sands e rv i c e stoth e a r t i cu l a t edn e ed so fICPWDandth ec a r er e c ip i en t ’ sn e ed sw a ss t r e s s ed(K a r l s sone ta l . , 93   2015 ;L il lye ta l . ,2012 ;S t i r l inge ta l . ,2010 ) . Mo r eov e r ,S t i r l inge ta l .(2010 )emph a s i z ed th a tfo cu s ingonICPWD ’ sf e l tn e edandp e r c e iv edn e edi smu chmo r ep r ed i c t iv eo fth e i r t ru en e edfo rs e rv i c e sth anno rm a t iv en e ed .No rm a t iv en e edc anb ev i ew eda sp a t e rn a l i s t i c , wh e r ebyth ePCPr e f e r sth eICPWDfo rs e rv i c e sb a s edonth e i rop in iono fth ec a r eg iv e r s n e ed . R e sp i t ew a sh e r a ld eda sth emo s tv a lu ab l efo rm a ls e rv i c efo rm anyICPWD (K a r l s sone ta l . ,2015 ;L eonge ta l . ,L i l lye ta l . ,2012 ;Sh an l eye ta l . ,2011 ) ;o f t en ,th e suppo r tn e ed edbyICPWDi sno tfo ra s s i s t an c ew i thth ec a r er e c ip i en t ’ sADL so r hou s ewo rk ,bu tr a th e rt im eaw ayfo ran e ed edb r e ako rtoa t t endtor e spon s ib i l i t i e sou t s id e th ehom e(Sh an l eye ta l . ,2011 ) .D e sp i t eth en e edfo rr e sp i t ec a r e ,th i sr e sou r c ei ss c a r c e , w i thICPWDo f t enun ab l etoa c c e s si tf rome i th e rfo rm a lo rin fo rm a lsou r c e s(Sh an l eye ta l . , 2011 ) . Ino rd e rtop rov id emo r ee f f e c t iv ep e r son c en t r edco l l abo r a t iv ec a r e ,J enn ing se ta l . (2015 )r e comm endth eimp l em en t a t iono fac a r ed e l i v e rymod e lth a tin c lud e sa comp r eh en s iv ec a r ep l anfo rth ec a r er e c ip i en t ,coun s e l ing ,edu c a t ion ,an t i c ip a to rygu id an c e , co l l abo r a t ionw i thcommun i tys e rv i c e s ,conn e c t iontor e sp i t e ,24 hou rsuppo r tem e rg en cy suppo r t ,andh e lpw i thadv an c edc a r ep l ann ing .Anin t e rd i s c ip l in a ryt e amo rNP /phy s i c i an t e amm aysu c c e s s fu l lyimp l em en tth i sc a r emod e lth a ti sa im eda tmo r ecomp r eh en s iv e ly m e e t ingth en e ed so fbo thICPWDandc a r er e c ip i en t s . Fam i lyandcommun i ty .Th i sth em einvo lv edth er e l a t ion sh ip sb e tw e enICPWD ando th e rf am i lym emb e r sa sw e l la sm emb e r so fth ecommun i ty .Con c e rn sabou td i s c lo su r e o fd i agno s i sdu etos t igm af romf am i ly ,f r i end s ,ando th e rm emb e r so fth ecommun i tya l so f e l lund e rth i sth em e .ICPWDinth el i t e r a tu r er epo r t edan e edfo rongo ingsupp o r tf rom 94   f am i lyandf r i end s(T e e l&C a r son ,2003 ) .Fo rm anyICPWD ,f am i lyandf r i end sa r epo s i t iv e sou r c e so fsuppo r t .R eg r e t t ab ly ,con f l i c to f t eno c cu r sb e tw e enICPWDando th e rf am i ly m emb e r sa sth er e su l to fth es t r e s so fp rog r e s s ingd em en t i a ,l e ad ingtoanev e r in c r e a s ing l a cko fou t s id esuppo r t(Bough twood ,2011 ) .C a r eg iv e r sinth eBough twoode ta l .(2011 ) s tudyfoundth a tcon f l i c tm aya r i s eb e tw e ens ib l ing sfo rex amp l e ,i fon er e fu s edtoa s s i s t w i thc a r e ,o rb e tw e enspou s e si fc a r eg iv ingfo rane ld e r lyp a r en tw a st ak ingt im eaw ayf rom anadu l tch i ld ’ simm ed i a t ef am i ly .Conv e r s e ly ,i fm anyp eop l ea r einvo lv edinp rov id ing c a r etoth es am eind iv idu a lw i thd em en t i a ,con f l i c tm aya r i s eou to fa t t emp t stom ak esh a r ed o rcon s en su sd e c i s ion m ak ingar e a l i ty(B ough twoode ta l . ,2011 ) . Du etoth ef e a ro fs t igm ao remb a r r a s sm en t ,ICPWDm ayavo idso c i a ls i tu a t ion s , th e r ebyg iv ingr i s etofu r th e rso c i a li so l a t ion(P ro rok ,2013 ) .Fo rin s t an c e ,twoICPWDin T e e landC a r son ’ s(2003 )s tudyno t edan e edfo rb e t t e rpub l icaw a r en e s sabou td em en t i a . On eICPWDs t a t ed ,“ som anyt im e swh enItookmyhu sb andou tinpub l i c ,p eop l ewou ld com eov e randa ckno w l edg em eandt a lktom eandto t a l lyigno r eh im… Youc an’ tju s t to t a l lyigno r eth emo f fth ef a c eo fth ee a r th ! ” .Ano th e rp a r t i c ip an tno t ed ,“ mayb ei t ’ smy im ag in a t ion ,bu twh enI ’v et ak enh e rou t ,a ro undg roup so fp eop l e ,th eyk indo fa c tl ik ei t ’ s acon t ag i ou sd i s e a s e ”(T e e l&C a r son ,2003 ,p .51 ) . F ind ing sinth el i t e r a tu r ed emon s t r a t edth a tcu l tu r es ign i f i c an t lyimp a c t sth e c a r eg iv ingexp e r i en c e .Fo rex amp l e ,th eno t iono fs t igm ac ans ign i f i c an t lya f f e c tCALD ICPWD .M iy aw ak i(2015 )foundth a tth ed i agno s i so fd em en t i ai so f t enno td i s c lo s eddu eto s t igm a .S t igm aw a sa s so c i a t edw i thsh am einsom eCh in e s eC an ad i anandCh in e s e Am e r i c anICPWD ,i so l a t ingth emf romo th e r sinth e i rcommun i tyandp r ev en t ingth emf rom s e ek ingsuppo r t iv es e rv i c e s(M iy aw ak i ,2015 ) .W i thr e sp e c ttoimp l i c a t ion sfo rPCP s , 95   In c r e a s edpub l i caw a r en e s swou lds e rv etoadd r e s sno ton lys t igm a ,bu tth ed e l ay ed d i agno s i si s su eid en t i f i edandd i s cu s s edp r ev iou s ly . Ino rd e rfo rPCP stop rov id esuppo r t iv ec a r etoICPWDf romCALDcommun i t i e s , th ecu l tu r a lcon t ex tandpo t en t i a ld i f f i cu l t i e st h eym ayf a c emu s tb econ s id e r edinth e p r a c t i c es e t t ing(Bough twoode ta l . ,2011 ;M iy aw ak i ,2015 ) .PCP sc anp rov id ecu l tu r a l ly s en s i t iv ec a r ebyob s e rv ingth eb eh av iou r so fICPWDinth ehom eo rc l in i cs e t t ing ,and exp lo r ingwh a ta sp e c t so fc a r eg iv ingi sim po r t an ttoth em(L ehm an ,n .d . ) .Mo r esp e c i f i c a l ly , h av inganund e r s t and ingo fcu l tu r a ls en s i t iv i tyi sc r i t i c a lwh ent e a ch ingm ino r i tyin fo rm a l c a r eg iv e r sabou tsk i l l stoimp rov eth e i rw e l l b e ing(Coh en&L e e ,2007 ) .Wh i l ei ti s e s s en t i a ltor e cogn i z eth a tno ta l lCALDICPWDa r een t r en ch edins im i l a rcu l tu r a lv a lu e s , “ know l edg eo fcommonp a t t e rn sandcu s tom sp rov id e safound a t ionfo rsp e c i f i ca s s e s sm en t o fth ec a r eg iv e randc a r er e c e iv e rexp e r i en c e ”(L ehm an ,n .d . ,p .6 ) . R e la t ion sh ipw i thth eca r er e c ip i ent .M anyo fth eICPWDinth el i t e r a tu r e d e s c r ib edth e i rexp e r i en c e so fhowth e i rr e l a t ion sh ipw i thth ec a r er e c ip i en tch ang eda sth e d em en t i ap rog r e s s ed .Th ech ang ingro l eo fth ec a r er e c ip i en tf romspou s eo rp a r en tto d ep end en tw a sfoundtob ev e ryd i f f i cu l tfo rbo thth ec a r er e c ip i en t sandICPWD (O ’Sh aughn e s sye ta l . ,2010 ) .ICPWDinBough twoode ta l . ’ s(2011 )s tudyr epo r t ed p e rp e tu a ld i f f i cu l tytoa c c ep tth i sch ang edr e l a t ion sh ip .R e l a t ion sh ip sth a ton c econ s i s t edo f lov eandin t im a cyw e r ed e s c r ib eda so f t envo l a t i l eandd i s t an t(Bough twoode ta l . ,2011 ) . Fo rex amp l e ,ac a r eg iv e rinO ’Sh aughn e s sye ta l . ’ s(2010 )s tudyr epo r t ed ,“ sh e ’ sb e com e v e rys e l fc en t e r ed ,sh en ev e rw a sth a tso r to fp e r son …sh ew a sv e ryou tgo inga sIw a s t a lk ingtosom eon eth a tIh av eknownfo raf ewy e a r sandsh ew a ssu chabubb lyp e r son , sh e ’ slo s tth a t... ”(p .243 ) .Conv e r s e ly ,som eICPWDr epo r t edan ew lyd e f in edr e l a t ion sh ip 96   th a tin c lud edg r e a t e ra f f e c t ion .On eICPWDs t a t ed ,“ th ankh e av en sth a tsh e ’ sa f f e c t ion a t e tow a rd sm e ,th a t ’ swond e r fu lr e a l ly .Sh es t i l lshow sm ea f f e c t ionandth el i t t l es igni sth a t sh e ’ scom eupandsh e ’ l lrubmya rm so rrubmyb a ck .Th a t ’ sh e ra f f e c t ions ign… ”(O ’ Sh aughn e s sy ,2011 ,p .243 ) .Acommonandp a r t i cu l a r lyadm i r ab l ef ind inginth el i t e r a tu r e wa sth a tm anyICPWDend e avou r edtom a in t a inth ec a r er e c ip i en t ’ sf e e l ingo fs e l f wo r th andh app in e s s(Ad am s ,2006 ;K a r l s sone ta l . ,2015 ;O ’Sh aughn e s sye ta l . ,2010 ) . O ’Sh aughn e s sye ta l .(2010 )s t a t eth a ten cou r ag ingICPWDtofo cu son‘wo rk ingtog e th e r ’ w ithth ec a r er e c ip i en t ,e sp e c i a l lydu r ingth ee a r lys t ag e so fd em en t i a ,c and e c r e a s es t r e s s andimp rov eth ed em en t i ajou rn eyfo rbo thinvo lv ed .Th i ss t r a t egyc anb esugg e s t edby PCP stoen cou r ag emo r epo s i t iv ec a r eg iv ingexp e r i en c e s . P e r sona ljou rn ey .A sICPWDt r av e lth ed em en t i ajou rn eyw i thth ec a r er e c ip i en t , th eyemb a rkuponth e i rownp e r son a ljou rn eya sw e l l .ICPWDr epo r t edh av ingexp e r i en c ed m anyemo t ion s .Ev eninth ee a r lys t ag e so fth ec a r er e c ip i en t ’ sd i s e a s ep ro c e s s ,ICPWDm ay exp e r i en c elon e l in e s sandso c i a li so l a t ion(G a lv ine ta l . ,2005 ;L i l lye ta l . ,2012 ) .F r i end s andf am i lym emb e r sm ayb eg intoavo idth ec a r er e c ip i en ton c em emo ryimp a i rm en tand unp r ed i c t ab l eb eh av iou r sb e com emo r eno t i c e ab l e .M anyICPWDr epo r t edf e e l ing so f un c e r t a in tyinth i ss t ag eo fth e i rjou rn eyinp a r t i cu l a r(L i l lye ta l . ,2012 ;O ’Sh aughn e s sye t a l . ,2010 ;P ro roke ta l . ,2013 ;T e e l&C a r son ,2003 ) .O th e rn eg a t iv eemo t ion ssu cha sf e a r , r e s en tm en t ,f ru s t r a t ion ,gu i l t ,g r i e f ,ang e r ,andimp a t i en c ew e r ef r equ en t lym en t ion edinth e l i t e r a tu r eands ev e r a lICPWDs t a t edth a tth eycommon lyexp e r i en c edo s c i l l a t ingn eg a t iv e f e e l ing sw i tha c c ep t an c e(O ’Sh aughn e s sye ta l . ,2010 ) . Ev e ryjou rn eyw i l lb ed i f f e r en tfo re a chICPWD ;how ev e r ,a sno t edinth el i t e r a tu r e m anyemo t ion sandexpe r i en c e sa r esh a r ed .Th einv a lu ab l ero l eo fsuppo r tg roup si s 97   emph a s i z edag a ina sth eyg iv eICPWDth eoppo r tun i tytor e l ayth e s ef e e l ing stoo th e r sth a t c anr e l a t etoth e i rexp e r i en c e sandi t e r a t etoth ec a r eg iv e rth a t ,a l thoughth eya r e exp e r i en c ingm anyd i f f i cu l t i e s ,th eya r eno ta lon einth e i rs i tu a t ion . Ano th e rc r i t i c a limp l i c a t ionfo rPCPp r a c t i c ei sb e ingcogn i z an tth a tICPWDm ay r e a chapo in tinth e i rjou rn eywh enth eya r enolong e rab l eo rw i l l ingtop rov id ec a r etoth e c a r er e c ip i en t .Th i si simpo r t an ta s“… suppo r t ingc a r eg iv e r sa l som e an sr e sp e c t ing c a r eg iv e r s ’d e c i s ion s .Suppo r ti sal a rg et e rmandm e an sa l sosuppo r t ingc a r eg iv e r swho don ’ tw an tto[b ec a r eg iv e r s ]anymo r e ”(Du ch a rm e ,2012 ,p a r a .62 ) .P rov id ingemo t ion a l suppo r tandh av inganaw a r en e s so fr e sou r c e sav a i l ab l etoh e lpICPWDandsh a r ingth ema s th eyr e l inqu i shth ero l eo fc a r eg iv e ri sanimpo r t an timp l i c a t ionfo rPCP s . Po s i t i v ea sp e c t so fca r eg i v ing .Mu cho fth el i t e r a tu r efo cu s e sonn eg a t iv ea sp e c t so f th ec a r eg iv ingro l e ;how ev e r ,twos tud i e sex am in edth epo s i t iv ea sp e c t so fc a r eg iv ing .Th e po s i t iv ea sp e c t so fc a r ingc anb econ c ep tu a l i z edu s ingNo l ane ta l . ’ s(1996 )‘ s a t i s f a c t ion so f c a r ing ’th a tadd r e s sth edyn am i cr e l a t ion sh ipb e tw e enth eICPWDandth ec a r er e c ip i en t , s a t i s f a c t ionf romin t e rp e r son a lv i ew so fc a r eg iv ing ,ands a t i s f a c t ionf romp romo t ingw e l l b e ingandp ro t e c t ingth ec a r er e c ip i en tf romh a rm .Th el a t t e rw a sd emon s t r a t edbyICPWD whos t r iv etom a in t a inth ec a r er e c ip i en t ’ sh app in e s sands en s eo fb e long ing ,a sd i s cu s s ed p r ev iou s ly .Coh ene ta l .(2002 )foundth a tpo s i t iv ef e e l ing sa s so c i a t edw i thc a r eg iv ingw e r e inv e r s e lys ign i f i c an t lyr e l a t edton eg a t iv ef e e l ing so fd ep r e s s ion ,s e l f r a t edh e a l thand bu rd en ,wh e r e a sICPWDwhof e l tpo s i t iv eabou tc a r eg iv ingr epo r t edl e s sn eg a t iv ef e e l ing s . Coh ene ta l .(2002 )sugg e s tth a t ,byPCP sa sk ingICPWDabou twh e th e rth eyf e e l po s i t iv eabou tc e r t a ina sp e c t so fc a r eg iv ing ,tho s ewhodono tr epo r tanypo s i t iv ea sp e c t s r e l a t edtoc a r eg iv ingm ayb eid en t i f i eda sa tr i skfo rd ep r e s s ion .Conv e r s e ly ,c a r eg iv e r swho 98   f e e lv e rypo s i t iv eabou tth e i rro l em ayr e fu s eano f f e ro fsuppo r t iv es e rv i c e s ;th eym ayno t f e e lth a to th e r sc anp rov id eth es am el ev e lo fc a r etot h ec a r er e c ip i en tth a tth eyth em s e lv e s a r eab l etodo .A l thoughno ta l lICPWDn e edsuppo r t iv es e rv i c e sa tth et im eth eya r e o f f e r ed ,r e fu s ingsu chs e rv i c e sm ayp l a c eth ema tr i skl a t e roninth ejou rn eyi fth ey sub s equ en t lyb e com ebu rd en edandh av eno tm ad etho s esuppo r t iv econ t a c t s(Coh ene ta l . , 2002 ) .Inadd i t iontod e t e rm in ingr i skth roughcon s id e r a t iono fpo s i t iv ea sp e c t so f c a r eg iv ing ,fo cu s ingonpo s i t iv ec a r ingexp e r i en c e sm ayh e lpICPWDtos e tth e i rown r e sou r c e sinmo t ionandfo s t e rbo thp e r son a lg row thandag r e a t e rs en s eo fm e an ing (P e a co cke ta l . ,2010 ) .Fu r th e r ,en cou r ag ingICPWDtofo cu sonth e i rs t r eng th sm ay mo t iv a t eth ec a r eg iv e rtocon t inu eonth e i rjou rn ey ,thu smo s tc e r t a in lyc r e a t ingab e t t e r d em en t i ajou rn eyfo rth ec a r er e c ip i en t . “Road s id eA s s i s tan c e” :Th eE f f e c t iv en e s so fSuppo r t iv eIn t e rv en t ion s Num e rou ss tud i e sth a th av eex am in edth ee f f e c t so fv a r iou sp sy cho so c i a land edu c a t ion a lin t e rv en t ion sonou t com e so fICPWDh av ed emon s t r a t edin con s i s t en t imp rov em en t sinc a r eg iv e rQOLo rw e l l b e ingandon lymod e r a t ee f f e c tinm e e t ingo th e r c a r eg iv e rou t com e s(B rod a ty ,G r e en ,&Ko s ch e r a ,2003 ;C z a j ae ta l . ,2013 ;Sör en s en , P inqu a r t ,&Dub e r s t e in ,2002 ;W i l ze ta l . ,2011 ) .G r e enwoode ta l .(2016 )foundth a t p sy cho so c i a lin t e rv en t ion sm ayimp rov eICPWD ’ sw e l l b e ingandd e c r e a s el ev e l so f d ep r e s s ion .   How ev e r,du etopoo rm e thodo log i c a lqu a l i tyo rin s ign i f i c an tr e su l t s ,mo s t in t e rv en t ion sa r eno ta c tu a l lyb e ingr e comm end edfo rp r a c t i c e .ICPWDinK a r l s sone ta l . ’ s (2015 )s tudya s so c i a t edin o f f i c ecoun s e l l ingth roughou tth ed em en t i at r a j e c to ryw i thgood PCPp r a c t i c e .How ev e r ,t h ep sy cho so c i a lin t e rv en t ion sinth es tud i e sinth i sr ev i ew , in c lud ingcogn i t iv eb eh av iou r a ls e s s ion s ,in o f f i c ecoun s e l ing ,andr e f e r r a l stosuppo r t iv e 99   s e rv i c e s ,d emon s t r a tednoimp rov em en tinICPWDQOLo rind e c r e a s ingbu rd en(M enne t a l . ,2012 ;Rod r igu e z S an ch e ze ta l . ,2012 ) .A l thoughc a r eg iv e r swhor e c e iv edcogn i t iv e b eh av iou r a lth e r apyr epo r t edimp rov em en t sinth e i rm en t a lh e a l thandg en e r a lw e l l b e ingin Rod r igu e zS an ch e ze ta l . ’ ss tudy(2012 ) ,th em e thodo log i c a lqu a l i tyw a sl a ck ing . Th ef ind ing so fth eedu c a t ion a lin t e rv en t ions tud i e sw e r econ t r ad i c to ryw i thr e sp e c t toth ee f f e c tonc a r eg iv e rbu rd en(Fo r t in skye ta l . ,2014 ;G av r i lov ae ta l . ,2009 )and c a r eg iv e rd ep r e s s ion(Bu rn se ta l . ,2003 ;Fo r t in skye ta l . ,2014 ) .A l thoughth eBu rn se ta l . (2003 )s tudyd idno td emon s t r a t eanys t a t i s t i c a ls ign i f i c an c eb e tw e enou t com e sdu eto in su f f i c i en tpow e rf romasm a l ls amp l es i z e ,th eau tho r sa rgu e dth a tth es t ab l er a t e so f d ep r e s s ionw e r ec l in i c a l lys ign i f i c an t .Bu rn se ta l .(2013 )s t a t edth a t“ i tm ayb en a ïv eto th inkth a tin t e rv en t ion sw i l le l im in a t eo rm a rk ed lyd e c r e a s ec a r eg iv e rs t r e s so rd ep r e s s ion ov e rth ecou r s eo fth ei l ln e s s ”(p .553 ) .Thu s ,inth econ t ex to fan eu rod eg en e r a t iv ed i s e a s e , anin t e rv en t ionth a tm a in t a in sas t ab l el ev e lo fd ep r e s s iono rs t r e s sinICPWDm ayinf a c tb e con s id e r edane f f e c t iv ein t e rv en t ion(Bu rn se ta l . ,2003 ) . Th et r an s f e r ab i l i tyo fth ein t e rv en t ion sb e tw e enr e s e a r chandp r a c t i c ew a s sp e c i f i c a l lyqu e s t ion edintwoo fth es tud i e s(Bu rn se ta l . ,2003 ;Rod r igu e z S an ch e ze ta l . , 2012 ) .Insom es a l a r i edNP l edp r im a ryc a r ec l in i c s ,acogn i t iv eb eh av io r a lth e r apy in t e rv en t ionm ayb ef e a s ib l eandimp rov eth em en t a lh e a l tho fICPWD .R eg r e t t ab ly ,th e im p l em en t a t iono fmo s to fth e s ein t e r imsuppo r t iv ein t e rv en t ion sin to20 90m inu t es e s s ion s inbu sy ,f e e fo r s e rv i c ep r im a ryc a r ec l in i c smu s tl a rg e lyb ev i ew eda sun r e a l i s t i c .B a s edon th ef ind ing so fth el i t e r a tu r e ,i th a sb e com ec l e a rth a tth eb e s tsuppo r t iv es t r a t eg i e sfo r ICPWDa r ep rov id edbyamu l t id i s c ip l in a ryt e amth a tcon t inu e sth roughou ta l ls t ag e so fth e d em en t i ajou rn ey .J enn ing se ta l .(2016 )ag r e e ,s t a t ingth a t“ in t e rv en t ion sth a t …p rov id e 100   ongo inga s s i s t an c ea sth ed i s e a s ep rog r e s s e sh av eb e enmo s te f f e c t iv e …bu tbu sy phy s i c i an sh av en e i th e rth et im eno r ,insom ec a s e s ,th esk i l l stoad equ a t e lyimp l em en t in t e rv en t ion s… ”(p .283 ) .How ev e r ,c e r t a ina sp e c t so fth er ev i ew edin t e rv en t ion scou ldb e app l i edtop r a c t i c eino rd e rtom e e tth en e ed so fICPWD .Fo rex amp l e ,edu c a t ionabou t d i s e a s em an ag em en t ,s t r e s sm an ag em en t ,andb eh av iou r a lm an ag em en tcou ldb ep rov id ed byNP sju s ta sedu c a t ioni sp rov id edtop a t i en t sw i tho th e rch ron i cd i s e a s e sdu r ingp r im a ry c a r ev i s i t s(Bu rn se ta l . ,2003 ) .Th i sv i ewi ssuppo r t edbyG av r i lov ae ta l .(2009 )whos t a t ed th a tev enun comp l i c a t ed ,sho r tedu c a t ion a lin t e rv en t ion sm ayp rov ev a lu ab l efo rICPWD .In l a rg e rin t e rd i s c ip l in a ryc l in i c s ,o th e rm emb e r so fth et e am ,su cha sR eg i s t e r edNu r s e s ,m ay a l sob eab l etop rov id ep a t i en t sw i thmo r ed e t a i l ededu c a t ioni fth eNPi swo rk ingw i th in sho r t e rappo in tm en tt im e s . Th eimp l em en t a t iono fco l l abo r a t iv ec a r ein t e rv en t ion sinp r im a ryc a r ey i e ld edth e mo s tp rom i s ecomp a r edtop sy cho so c i a landedu c a t ion a lin t e rv en t ion sa lon e(B as se ta l , 2013 ;V i ck r ey ,2006 ) .Du etoth ecomp l exn a tu r eo fc a r eg iv e r sn e ed s ,th i si sno tp a r t i cu l a r ly su rp r i s ing .Th ee f f e c t iv en e s so fth ePa r tn e r sinDem en t i aCa r ein t e rv en t ioninth eB a s se ta l . (2013 )s tudyinm e e t ingunm e tin fo rm a lc a r eg iv e rn e ed ,s t r a in ,andd ep r e s s ionm ayb e r e l a t edtoth ef a c tth a tth ep rog r amw a sd ev e lop edw i thav i ewtoadd r e s ssp e c i f i ci s su e sw i th c a r eth a tICPWDh adexp r e s s edp r io rtod ev e lopm en to fth ep rog r am .Th e s ei s su e sm i r ro r th er epo r t edn e ed so fICPWDinth es tud i e sinth i sr ev i ew ,in c lud ingl a cko fr e cogn i t iono f c a r eg iv e r ’ sf e e l ing so fi so l a t ion ,l a cko fedu c a t ionandr e sou r c esh a r ing ,f r agm en t ed ,poo r ly coo rd in a t eds e rv i c ep rov i s ion ,andth el a cko fcon s id e r a t iono fc a r eg iv e r s ’n e ed s(B a s se ta l . , 2013 ) .Th einv a lu ab leb en e f i to fth eco l l abo r a t ionb e tw e enh e a l ths e rv i c e sandad em en t i a fo cu s edcommun i tyag en cyw a sev id en tinth es tudybyB a s se ta l .(2013 ) . 101   Bo tho fth eNPl edin t e rv en t ion sev a lu a t edinth el i t e r a tu r er e su l t edinas a t i s f a c to ry ev a lu a t iono fth ein t e rv en t ionbys tudyp a r t i c ip an t sr e l a t edtoth ed ev e lopm en to fpo s i t iv e r e l a t ion sh ip sw i thth eNP swhoimp l em en t edth ein t e rv en t ion s(C a l l ah ane ta l . ,2006 ; Fo r t in skye ta l . ,2009 ).Th i sm ayb eas ign i f i c an tf ind ingini t s e l f ,a sth ec a r eg iv e r ’ s p e r c ep t iono ft h er e l a t ion sh ipw i thth ePCPin f lu en c e sth ep e r c ep t iono fsuppo r t .Th i s d emon s t r a t e sth eimpo r t an c eo fp rov id ingsuppo r tth roughth ed ev e lopm en tandfo s t e r ingo f th e r ap eu t i cr e l a t ion sh ip s .I fth eICPWDcon t inu e stof e e lsuppo r t edbyth e i rPCPo rc a r e r e c ip i en t ’ sPCP ,th i sm ayb emu chmo r epow e r fu lth anth ein t e rv en t ioni t s e l fa timp rov ing th ec a r eg iv ingjou rn ey .Ag a inth et r an s f e r ab i l i tyo fth i sr e s e a r chtop r a c t i c einB r i t i sh Co lumb i a(BC )m ayb el im i t eda sth ero l eo fth eNP sinth e s es tud i e si sv e ryd i f f e r en ttoth e ro l eo fmo s tNP sinBC ,m anyo fwhomh av es im i l a rro l e stoF am i lyPhy s i c i an s . C l in i ca lP ra c t i c eGu id e l in e s Tu rn e r ,M i s so ,H a r r i s ,andG r e en(2008 )s t a t edth a t,h i s to r i c a l ly ,c l in i c a lp r a c t i c e gu id e l in e s“w e r eo f t end ev e lop edbycon s en su so fag roupo fexp e r tc l in i c i an sw i thou t exp l i c i tr e f e r en c etor e s e a r chev id en c e ”(p .2 ) .Tod ay ,i ti sanexp e c t a t iono fmo s tPCP sth a t c l in i c a lp r a c t i c egu id e l in e sw i l lb ed ev e l op edb a s edonh ighqu a l i tyev id en c e .How ev e r ,th e r e comm end a t ion sinth ec a r eg iv e rsuppo r ts e c t ion sind em en t i ac a r ec l in i c a lp r a c t i c e gu id e l in e sinth i sr ev i ewa r eno tsuppo r t edbyth i sk indo fev id en c e .S im i l a r ly ,inaned i to r i a l byCo l l in s&Sw a r t z(201 1 ) ,a l lo fth ec l in i c a lr e comm end a t ion sfo rc a r eg iv e rc a r efoundin th el i t e r a tu r es e a r cha r eb a s edoncon s en su s ,exp e r top in ion ,o rc a s es tud i e s ,o ru su a lp r a c t i c e r a th e rth angoodqu a l i tyev id en c e .Th i sw a sasu rp r i s ingf ind inga smo s tp r a c t i t ion e r swou ld u s ec l in i c a lp r a c t i c egu id e l in e sund e rth ea s sump t ionth a tth er e comm end a t ion sa r e app rop r i a t e lysuppo r t edbygoodqu a l i tyev id en c e . 102   Th eab s en c eo faBCb a s edo rC an ad i angu id e l in eonc a r eg iv e rsuppo r tw a sa l soan un an t i c ip a t edf ind ing .Al a cko fav a i l a b l ef in an c inginwh i chtosuppo r tth ed ev e lopm en tand pub l i c a t iono fagu id e l in e ,al a ckr e cogn i t iono fn e edbyagov e rn ingbody ,ag en cy ,o r o rg an i z a t ion ,o rth ed e a r tho fqu a l i tyl i t e r a tu r einwh i chtod ev e lopqu a l i tyev id en c e b a s ed r e comm end a t ion sm aya l lb econ t r ibu t ingf a c to r sint e rm so fwhynoBCo rC an ad i an gu id e l in e sh av eb e enpub l i sh edtod a t e .Fu r th e r ,ad equ a t e lysuppo r t ingc a r eg iv e r sr equ i r e s th einvo lv em en to fnum e rou sh e a l thc a r ep rov id e r s ,andh e a l thc a r eandcommun i ty ag en c i e s .I tm ayp rov ech a l l eng ingtoconn e c tth e s enum e rou ss t ak eho ld e r sw i th inBCo r C an ad aino rd e rtod ev e lopagu id e l in efo ru s einp r im a ryc a r ep r a c t i c e .Th eab s en c eo f gu id e l in e sth a ta r esp e c i f i ctoICPWDp rov in c i a l ly ,n a t ion a l ly ,andin t e rn a t ion a l lyi sl ik e ly con t r ibu t i ngtoth ein con s i s t en tsuppo r tICPWDa r er e c e iv inginp r im a ryc a r ep r a c t i c e s e t t ing s .Th eav a i l ab i l i tyo facomp r eh en s iv eBC b a s edo rn a t ion a lgu id e l in eou t l in ingth e b e s tw ay stosuppo r tICPWDc ou ldb en e f i tNPp r a c t i c ea si twou lda l lowNP stoen su r eth a t th eyw e r ep rov id ingcon s i s t en tev id en c e b a s edsuppo r t iv es t r a t eg i e sfo rICPWD . Th eRo l eo fth eNPandImp l i ca t ion sfo rNPP ra c t i c e Incondu c t ingth i sin t eg r a t iv el i t e r a tu r er ev i ew ,no t ab l eg ap sinp r a c t i c e ,r e s e a r ch , andpo l i cyh av eem e rg edth a tcou lda f f e c tth ep e r c e iv edanda c tu a lsuppo r tth a tICPWD r e c e iv e .Fu r th e rmo r e ,i th a sb e com ec l e a rth roughsyn th e s i so fth el i t e r a tu r eth a tth ero l eo f th eNPi sb en e f i c i a linm e e tingth eexp r e s s edn e ed so fICPWDandp rov id inge f f e c t iv e suppo r tfo rth e s ec a r eg iv e r s .Ina“ s t rong lyphy s i c i an c en t r i c ”(Tho rn e ,2011 ,p a r a .1 ) p r im a ryc a r esy s t emth a ti scu r r en t lys t rugg l ingtom e e tth en e ed so fICPWD ,NP sc an p rov id einnov a t iv eapp ro a ch e stoc a r eth a tno ton lyp rov id emu chn e ed edsuppo r tto 103   ICPWD ,bu tth a twou lda l sowo rkono rg an i z a t ion a landsy s t em sl ev e l stoc r e a t ech ang e sfo r th e s ec a r eg iv e r s ,th e r ebyn a r row ingth eex i s t ingg ap sinh e a l thc a r e . Th ero l eo fNP sp rov id e saun iqu ep e r sp e c t iv ef romwh i chtosu c c e s s fu l lygu id e ICPWDth roughth e i rjou rn ey s .Inanin t e rv i eww i thS chw a r t z(2009 ) ,S t r ing a r iMu r r ay s t a t edth a tth eNPmod e lo fc a r ei sp a t i en t ,f am i ly ,andcommun i tyfo cu s edr a th e rth anth e d i s e a s efo cu sth a tcomp r i s e sth em ed i c a lmod e lo fc a r e .A sadv an c edp r a c t i c enu r s e s ,NP s b r ingaho l i s t i cp e r sp e c t iv e ;th i saugm en t sth e i rd i agno s t i cknow l edg e ,c l in i c a lsk i l l s ,and ab i l i tytoa idind ev e lop ingh igh lyth e r ap eu t i cin t e rp e r son a lr e l a t ion sh ip sw i thICPWDand th e i rc a r er e c ip i en t s .NP sc anu s eth e i rc l in i c a lknow l edg eandsk i l l stoob t a inatho rough h i s to ryo fth e s ec l i en t swh i l ea l soinqu i r ingabou tso c i a ld e t e rm in an t so fh e a l thandth e f am i lycon t ex t ,comp l e t ingaphy s i c a lex am ,p e r fo rm ingcogn i t iv ea s s e s sm en t s ,and in t e rp r e t ingl abwo rkando th e rinv e s t ig a t ion storu l eou tr ev e r s ib l ec au s e so fd em en t i a . Onc esu chacomp r eh en s iv ea s s e s sm en tandwo rkuph a sb e encomp l e t ed ,th eNPwou ldb e ab l etop rov id ead i agno s i so fd em en t i a ,wh e r eapp rop r i a t e . Th eC an ad i anFound a t ionfo rH e a l th c a r eImp rov em en t(2010 )s t a t edth a tp a t i en t s app r e c i a t eth ecommun i c a t ions ty l eo fNP sandth eadd i t ion a lt im eth eysp endw i thth e i r p a t i en t s .Fu r th e r ,s tud i e sh av ed emon s t r a t edth a tNP st endtoa skmo r equ e s t ion so fp a t i en t s ando f f e rmo r ein fo rm a t ionandop t ion sfo rc a r eth anphy s i c i an s(C an ad i anFound a t ionfo r H e a l th c a r eImp rov em en t ,2010 ) .AnICPWDsp e ak ingw i thK e l so(2015 )s t a t edth a t ,in add i t iontom e e t ingth e i rm ed i c a ln e ed s ,th eNPc an“ add r e s sth ep sy cho so c i a ln e ed sth a t m ayo rm ayno tb em ed i c a l lys e r iou sbu ts t i l lacon c e rn ”(p a r a .5 ) .Fo rin s t an c e ,NP sc anu s e th eth em e sth a tem e rg edinth equ a l i t a t iv el i t e r a tu r einth i sr ev i ewtoin i t i a t econv e r s a t ion w i thICPWDr eg a rd ingi s su e sth a tth eym ayb ef a c ingandemo t ion sth a tth eym ayb e 104   f e e l ing .M anyICPWDm ayno tth em s e lv e sin i t i a t eth i sconv e r s a t ionw i thth e i rPCP ; th e r e fo r e ,m en t ion ingo th e rICPWDexp e r i en c e sc ana l lowNP stoa s s e s swh a ti s su e sth a t ICPWDm ayb eexp e r i en c ingandadd r e s sth emth roughin o f f i c ecoun s e l ingandsuppo r t ,a s w e l la so f f e r ingr e sou r c e sth a tm ayb en e f i tth ec a r eg iv e r .Th eNPc ana l sowo rkw i thth e p a t i en tandf am i lyinp rov id ingan t i c ip a to rygu id an c ea sth eywo rkth roughth en ew d i agno s i sandth ech ang e sth a tw i l lcom eov e rt im e . Th esk i l ls e to fNP si so fp a r t i cu l a rs ign i f i c an c ea tth et im eo fd i agno s i s .D i agno s ing ap a t i en tw i thd em en t i ac anb ev e ryd i f f i cu l tfo rPCP s .Fo rth ep a t i en tandth e i rf am i ly m emb e r s ,th eimp a c to fr e c e iv ingad i agno s i so fat e rm in a l ,p rog r e s s iv e ,n eu rod eg en e r a t iv e d i s e a s eth a th a snohop eo facu r ec anb ed ev a s t a t ing .NP sc ano f f e rth et im etop rov i d e edu c a t ionandh e a l thp romo t ions t r a t eg i e s ,add r e s scon c e rn sr a i s edbyICPWDo rth ec a r e r e c ip i en t ,p rov id eemo t ion a lsuppo r t ,andconn e c tf am i l i e stor e sou r c e sth a tth eym ayn e eda t th i sc r i t i c a lt im einth ed em en t i ajou rn ey ;o th e rPCP sm ayno tb es im i l a r lyab l etoo f f e rsu ch comp r eh en s iv eb en e f i t sdu etoth ecu r r en tf e e fo r s e rv i c emod e lth a tcu r r en t lyex i s t sin C an ad a .M anyNP swo rk inga sm emb e r so famu l t id i s c ip l in a ryt e amwh i chw i l ls t r eng th en th ec a r emod e lfo rth ep a t i en tandf am i lya sth eyjou rn eyth roughth ed i s e a s ep r og r e s s iono f d em en t i a . Eng ag em en tinco l l abo r a t iv ep r a c t i c ei sak eycompon en to fNPp r a c t i c e(T e e l& C a r son ,2003 ).NP sc anu s eth e i re f f e c t iv ecommun i c a t ionsk i l l stoco l l abo r a t ew i th m emb e r so famu l t id i s c ip l in a ryt e am ,sp e c i a l i s t s ,commun i tyo rg an i z a t ion s ,a sw e l la sth e ICPWDandc a r er e c ip i en ttod ev e lopc a r ep l an sfo rth ep a t i en tw i thd em en t i aandth e i r ICPWD .Th eNPm ayp a r t i c ip a t einco l l abo r a t iv et e amv i s i t sandf am i lym e e t ing stosh a r e th e i rknow l edg ew i thth et e amanda idinp rov id ingqu a l i typ a t i en tc a r e . 105   Th ecomp a s s ion a t eandp ro f e s s ion a ln a tu r eo fNP sc anl endi t s e l ftoasu c c e s s fu l p a l l i a t iv ec a r eapp ro a chs t a r t inga td i agno s i sw i thadv an c edc a r ep l ann ing .C lo s e rtoth eend o fth ed em en t i ajou rn eyNP sc ana l soco l l abo r a t ew i thm emb e r so fap a l l i a t iv ec a r et e amto p rov id eICPWDandth e i rc a r er e c ip i en t sw i thn e ed edsuppo r ta tth a tt im e . Ano th e rinv a lu ab l ea sp e c to fNPp r a c t i c ei sth eab i l i tytoo f f e rhom ev i s i t swh e r eth e NPh a sth eoppo r tun i tytoob s e rv eth eho m eenv i ronm en to fICPWDandc a r er e c ip i en t sand d ev e lopag r e a t e rund e r s t and ingo fth e i rs i tu a t ion(Unw in&T a tum ,2011 ) .Hom ev i s i t sa r e animpo r t an tcompon en to fd em en t i ac a r e ,a sth eym ayd e c r e a s eth enumb e ro fho sp i t a l adm i s s ion sandt r an s f e r stor e s id en t i a lc a r ef a c i l i t i e s(Unw in&T a tum ,2011 ) . NP sa l soo f t enwo rkw i thvu ln e r ab l epopu l a t ion swhoa r ea th ighr i sko ff a l l ingin to th e“d i agno s t i cg ap ”(L e a ch&H i ck s ,2013 ,p .439 ) .N ay lo re ta l .(2013 )s t a t eth a tsu ch vu ln e r ab l epopu l a t ion sc anin c lud e :ind iv idu a l sw i thou taPCP ,m a rg in a l i z edpopu l a t ion s , tho s ewhol iv ea lon e ,th e“o ld e s to ld ”ind iv idu a l s ,andtho s einru r a la r e a s .NP sm ayb eina p a r t i cu l a r lygoodpo s i t iontoid en t i fyanda s s e s sth e s eh igh r i skp a t i en t s ,con s equ en t ly p romo t ingt im e lyd i agno s i sandth ee a r lyimp l em en t a t iono fsuppo r t sfo rp a t i en t sandth e i r ICPWD .Fu r th e r ,NP scon s id e ra l ld e t e rm in an t so fh e a l thth a tm ayimp a c tth eh e a l thand w e l lb e ingo fICPWDa sw e l la sc a r eg iv e rbu rd en .Ov e r a l l ,NP sc anp l ayak eyro l ein suppo r t ingbo thICPWDandth ec a r er e c ip i en tw i thd em en t i a . Th ein c lu s iono fNPro l e sinp r im a ryc a r eo f f e r soppo r tun i tyfo rimp rov edp a t i en t andh e a l thc a r esy s t emou t com e s ,a sNP sno ton lyenh an c ep r im a ryc a r ep r a c t i c ew i thth e i r un iqu esk i l l sandexp e r i en c e ,bu tt h eya l socon t r ibu t etoh e a l thc a r eth roughl e ad e r sh ipand con su l t a t ion .Th e s eab i l i t i e sa l lowNP stoimp rov eav a i l ab l esuppo r tth roughc l in i c a l 106   p r a c t i c ea sw e l la sth roughth ed ev e lopm en to fpo l i c i e sandcommun i tyando rg an i z a t ion a l c ap a c i ty bu i ld ing(CNA ,2011 ) . W i thth eg row ingnumb e ro fag ingadu l t sw i thd em en t i a,andth esub s equ en tnumb e r o fICPWDinC an ad a ,th eadv e r s eou t com e sth a tc ano c cu rr e l a t edtoc a r eg iv ingw i l l con t inu etob eacomp e l l ingp rob l emth a tmu s tb eadd r e s s edinp r im a ryc a r e .I ti simp e r a t iv e th a tICPWDa r ew e l l suppo r t edino rd e rtom a in t a inth eh e a l thandw e l l b e ingo fbo th ICPWDandth e i rc a r er e c ip i en t sth roughth een t i r ed em en t i ajou rn ey .Fo rNP s ,th i sm e an s u s ingaf am i ly c en t r ed ,co l l abo r a t iv e ,p ro a c t iv ep r im a ryc a r eapp ro a chtod ev e lopand imp l em en tinnov a t iv eande f f e c t iv esuppo r t iv es t r a t eg i e s . Rob in sonVo l lm anand M a r t inM i s en e r(2005 )a s c e r t a in edth a ti ti se s s en t i a lth a t NP seng ag ea tmu l t ip l esy s t em sl ev e l sino rd e rtoadd r e s si s su e sth a ta f f e c tp a t i en t sandth e i r f am i l i e s .Th ed ev e lopm en to famod e lo rf r am ewo rkth a tou t l in e ssuppo r t iv es t r a t eg i e sa ta l l l ev e l so fin f lu en c e ,and du r inga l ls t ag e so fd em en t i a ,wou ldh e lpNP sando th e rPCP sto p rov id econ s i s t en t ,comp r eh en s iv e ,co l l abo r a t iv ec a r etobo thICPWDandth e i rc a r e r e c ip i en t s .Th ed ev e lopm en to fan e wmod e lo fc a r ei saqu a l i tyex amp l eo fadv an c em en t andn e edfo rNPro l e sth a tex t endb eyondc l in i c a lp r a c t i c e(B ry an t Luko s iu s ,D iC en so , B rown e ,&P in e l l i ,2004) .D ev e lop ingandimp l em en t ingn ewin t e rv en t ion sandam od e lo f c a r ewou ldp rov id eoppo r tun i t i e sfo rp ro f e s s ion a ld ev e lopm en t ,co l l abo r a t iv ee f fo r t s b e tw e eno th e rPCP sandr e s e a r ch e r s ,anda l lowNP stod emon s t r a t eth e i rwo rkinas cho l a r ly c ap a c i ty(Co rn e re ta l . ,1995 ,P l an te ta l . ,2000 ) . Anad ap t a t iono ftheC en t e r sfo rD i s e a s eCon t ro landP r ev en t ion ’ s(CDC ,2015 ) so c i a le co log i c a lmod e l( s e eF igu r e3 )p rov id e sanex amp l eo famu l t i l ev e l ,mu l t i d i s c ip l in a ryp r im a ryc a r eapp ro a chtoICPWDsuppo r t .NP sc anu s esu chamod e ltod ev e lop 107   suppo r t iv es t r a t eg i e sa ta l ll ev e l so fin f lu en c e .U s ingaso c io e co log i c a lmod e lsu cha sth e CDC ’ s(2015 )“o f f e r sc l e a rimp l em en t a t iongu id e l in e sfo rm ax im i z ingth eh e a l th ,e conom i c , andso c i e t a lb en e f i t s ”o fin t e rv en t ion sa im eda th e a l thp romo t ionandp r ev en t ion(S toko l s , 1996 ,p.295 ) . Po l i c y Commu n i ty O r g a n i z a t io n a l R e l a t io n a l In fo rm a l C a r eg iv e r ( s ) / p a t i en tw i th d em en t i a F igu r e3.So c i a le co log i c a lmod e lfo rp r im a ryc a r eb a s edsuppo r t iv es t r a t eg i e sfo rICPWD . Ad ap t edf rom“So c i a lE co log i c a l Mod e l ” ,byTh eC en t e r sfo rD i s ea s eCon t ro land P r e v en t ion,2015 .Copy r igh t2015byth eP rov in c eo fB r i t i shCo lumb i a . Ex amp l e so fr e l ev an tin t e rv en t ion sa ta l ll ev e l sin c lud e : •  In fo rma lca r eg i v e r /pa t i en tw i thd em en t ia :In c r e a s ingknow l edg eo fd em en t i a , c a r eg iv e rcomp e t en c e ,sk i l lbu i ld ing ,s t r e s sm an ag em en t ,andcop ingsk i l l sth rough edu c a t ionandr e f e r r a l scommun i typ rog r am s ,andp rov id ingt im e lyd i agno s i sand emo t ion a lsuppo r ta td i agno s i sandimm ed i a t e lya f t e rtop r ep a r eICPWDfo rth e jou rn eyah e ad ; 108   •  R e la t iona l:a s s e s s ingsuppo r tn e two rk s ,ho ld ingf am i lym e e t ing stod e t e rm in ea f am i lyr e sp i t ep l an ,r e f e r r a ltosuppo r tg ro up sandsuppo r t iv ecommun i tys e rv i c e s , andbu i ld ings t rongth e r ap eu t i cr e l a t ion sh ip sw i thth eICPWDandth ec a r er e c ip i en t ; •  O rgan i za t iona l:p romo t ingaf am i ly c en t r edapp ro a chinth ewo rkp l a c e ,en su r ing coo rd in a t eds e rv i c ep rov i s ion ,p i lo t ingICPWDa s s e s sm en tfo rm so rco l l abo r a t iv e p rog r am sa im eda timp rov ingou t com e sfo rICPWD ;co l l abo r a t ingw i tho th e r m emb e r so fth eh e a l thc a r et e am ,andp rov id ingo th e rPCP sw i thanupd a t edr e sou r c e l i s tfo rsuppo r t iv es e rv i c e s ; •  Commun i t y:r a i s ingpub l i caw a r en e s so fd em e n t i aandc a r eg iv ingth roughm ed i a c amp a ign so rb e com inginvo lv edinch a r i t ab l eev en t sa im eda tr a i s ingaw a r en e s sand fund ingfo rd em en t i ac a r eandr e s e a r ch ,o rwo rk ingw i thcommun i ty b a s ed o rg an i z a t ion stod ev e lopsuppo r t iv es t r a t eg i e s ; •  Po l i c y:d ev e lop ingc l in i c a lp r a c t i c egu id e l in e sa im eda tICPWDsuppo r t ,d ev e lop ing asho r tICPWDa s s e s sm en tfo rmth a tNP sc anu s einth ep r a c t i c es e t t ing sfo ra l l ICPWD ;p a r t i c ip a t inginh e a l thc a r epo l i cych ang e sth a ten cou r ag eaf am i ly c en t r ed app ro a chtoc a r e ;o rd ev e lop i ngo fan ewmod e lo fc a r ea im eda tsuppo r t ingICPWD andth ec a r er e c ip i en t . An a ly z ingth el i t e r a tu r eh a sp rov id edinv a lu ab l ein s igh t sfo rNP sin toth en e ed s andexp e r i en c e so fICPWD .G a in ingknow l edg eabou tth e i rexp e r i en c e sc anin fo rmth e d ev e lopm en to fp e r son c en t r edandf am i ly c en t r eds t r a t eg i e s ,su cha swh enandhowto imp l em en tsuppo r t iv es e rv i c e sa san e c e s s a rys t eptom e e t ingth eICPWD ’ sn e ed sandto p rov id ingad equ a t esuppo r t(Dupu i s ,Epp ,&Sm a l e ,2004 ) .How ev e r ,d i r e c t iononwh a t typ eo fin fo rm a t i onandin t e rv en t ion sshou ldb ep rov id eda te a chs t ag eo fth ed em en t i a 109   jou rn eyi sl a ck ing .Th eS IGNgu id e l in e(2011 )ag r e e ss t a t ingth a t“ th er e s e a r chl i t e r a tu r e do e sno tp rov id eac l e a rcon s en su sr eg a rd ingth etyp eo fin fo rm a t ionp eop l ew i th d em en t i aandth e i rc a r e r sn e eda td i f f e r en ts t ag e so fth e i rjou rn eyo fc a r e ”(p .21 ) .In add i t ion ,wh i l eNP sa r er equ i r edtou s eev id en c eb a s edgu id e l in e stop romo t ecomp e t en t , qu a l i tyc a r e(CNA ,2006 ) ,nogu id e l in e sh av ey e tb e end ev e lop edtogu id ed e c i s ion m ak ingw i thr eg a rd stop rov id ingsuppo r ttoICPWD .A tth epo l i cyl ev e l ,NP sc an p a r t i c ip a t einth ed ev e lopm en to fb e s tp r a c t i c egu id e l in e sandth ed ev e lopm en to fa‘ ro ad m ap ’th a tou t l in e swh a tin t e rv en t ion sshou ldb eimp l em en t eda tsp e c i f i ct im e sdu r ingth e d em en t i ajou rn ey .Anex amp l eo fth etyp eo f‘ ro adm ap ’th a tNP scou ldu s einp r a c t i c e b a s edonth ef ind ing so fth i sr ev i ewi sp rov id edinApp end ixD . Ano th e rimp l i c a t ionfo rp r a c t i c ea tth epo l i cyl ev e li stoadvo c a t efo rICPWDby lobby ingfo rch ang e .Dupu i s ,Epp ,&Sm a l e(2004 )en cou r ag ePCP stolobbytoch ang e ex i s t ingpo l i c i e sw i thr e sp e c ttogov e rnm en tfund ingfo rsuppo r t iv es e rv i c e s ,and “ d ev e lopinnov a t iv eapp ro a ch e stoth ep rov i s iono fcommun i tysuppo r ts e rv i c e sth a ta r e t ru lysu s t a in ab l e ,f l ex ib l e ,po r t ab l e ,andr e spon s iv etoind iv idu a lc a r eg iv e r s ’n e ed s ”(p . 74 ) .Th i si sanimpo r t an tcon s id e r a t ionfo rPCP sa sth eF am i lyC a r eg iv e r s ’N e two rk So c i e ty(2010 )r epo r t edth a t77%o fth esuppo r t iv es e rv i c e sfo rin fo rm a lc a r eg iv e r sw e r e p rov id edbynon p ro f i to rg an i z a t ion swhor e lyonmon eyf romh e a l thau tho r i t i e s ,g r an t s , o rfund r a i s ingtorunth e i rp rog r am s .M anyp rog r am s ,su cha sth eC a r eg iv e rA s so c i a t ion o fBC ,a r efo r c edtoc e a s erunn ingdu etol a cko ffund ing .NP sc anlobbyfo rch ang eby sp e ak ingtoth e i rM emb e ro fP a r l i am en td i r e c t lyo rbyconn e c t ingw i tho rg an i z a t ion s ( su cha sth eC an ad i anNu r s e s ’A s so c i a t ion )toen cou r ag eo th e r sinth ef i e ldtojo in 110   tog e th e randc r e a t eas t rong e rvo i c einwh i chtoch amp ionch ang efo rICPWDinp r im a ry c a r es e t t ing s .   Th ewo rkdon einth i sr ev i ewh a si l lum in a t edth eimpo r t an tro l eth a tNP sc anand shou ldp l ayinad equ a t e lysuppo r t ingICPWDandth e i rc a r er e c ip i en t sinp r im a ryc a r eand th enum e rou simp l i c a t ion sfo rNP s .Th eg row ingnumb e ro fp e r son sw i thd em en t i aandth e i r in fo rm a lc a r eg iv e r s ,th ed ev a s t a t ingimp a c to fd i agno s i sandd i s e a s em an i f e s t a t ion s ,andth e l a cko fc l in i c a lp r a c t i c egu id e l in e sandav a i l ab l ec a r eg iv e ra s s e s sm en ttoo l s ,a l l s ign i f i c an t ly imp a c tNPp r a c t i c e .M anyoppo r tun i t i e sex i s tfo rNP stoo f f e rc o l l abo r a t iv e ,coo rd in a t ed s e rv i c ep rov i s ionth a tsuppo r t sandm e e t sth en e ed so fICPWDandth e i rc a r er e c ip i en t s . Po l i cyl ev e ls t r a t eg i e sh av eb e end i s cu s s ed .Fu r th e rs t r a t eg i e sth a tc anb eimp l em en t eda tth e ind iv idu a l ,r e l a t ion a l ,o rg an i z a t ion a l ,andcom mun i tyl ev e lw i l lb ed i s cu s s edinth e fo l low ingch ap t e r . 111   Chap t e r5:R e comm enda t ion s P e a co cke ta l .(2010 )s t a t eth a tp rog r e s sh a sb e enm ad etoimp rov esuppo r tto ICPWD ;how ev e r ,mo r eimp rov em en t sa r en e ed edinth ea r e ao fc l in i c a lp r a c t i c e ,r e s e a r ch , andh e a l thandso c i a lpo l i c i e s .Aninnov a t iv eandp ro a c t iv eapp ro a chbyPCP sc ana s s i s t I CPWDtoad ap ttoth ech ang ingro l e sth eyw i l lexp e r i en c eth roughou tth ec a r eg iv ing jou rn ey(No l an ,Ing r am ,& W a t son ,2002 ) .G a in ingund e r s t and ingo fth eexp e r i en c e so f ICPWDp rov id e sth efound a t ioninwh i chto“m apth ed em en t i ajou rn ey ”fo rc a r eg iv e r s ( W i er sm a ,2014 ) .A l thoughco l l abo r a t iv ec a r ein t e rv en t ion sshowp rom i s ea timp rov ingth e l iv edexp e r i en c e so fICPWD ,ov e r a l l ,th el i t e r a tu r einth i sr ev i ewh a sd emon s t r a t edth a t comp l ex ,t im e con sum ingp r im a ryc a r e b a s edp rog r am sa r eno tn e c e s s a r i lyth emo s t e f f e c t iv ea timp rov ingc a r eg iv e rw e l l b e ing .Add i t ion a l ly ,w i thr e sp e c ttoc a r eg iv e r a s s e s sm en t ,noev id en c eh a sb e enfoundth a tsuppo r t sth eu s eo fa s s e s sm en ttoo l ssp e c i f i cto th eun iqu en e ed so fICPWD .E l em en t a ry ,o f f i c e b a s edin t e rv en t ion sp e r fo rm edbyPCP s m ay,inf a c t , p rov etob emo r ee f f e c t iv ea te f f e c t iv e lysuppo r t ingICPWD .Inana t t emp tto b r ingabou tth eimp rov em en t sP e a co cke ta l .(2010 )h a ssugg e s t ed ,th i sch ap t e rw i l lou t l in e imp l i c a t ion sfo rc l in i c a lp r a c t i c efo rPCP s ,r e comm end a t ion sfo redu c a t ion ,and r e comm end a t ion sfo rfu tu r er e s e a r ch . R e comm enda t ion sfo rC l in i ca lP ra c t i c e T im e lyd iagno s i s.E a r lyd i agno s i sc anh e lpbo thICPWDandc a r er e c ip i en t sby in i t i a t ingph a rm a co th e r apytot r e a td em en t i a ,en su r ingsuppo r t sa r epu tin top l a c eb e fo r ea c r i s i ss i tu a t iono c cu r s ,andad equ a t e lyp r ep a r ingth eICPWDandth ec a r er e c ip i en tfo rth e jou rn eyth eya r eemb a rk ingupon .A l thoughs c r e en ingfo rcogn i t iv eimp a i rm en tin a symp tom a t i cp a t i en t si sno tr e comm end ed(Gu id e l in e sandP ro to co l sComm i t t e e ,2014 ) , 112   e ld e r lyp a t i en t sandc a r eg iv e r sshou ldb een cou r ag edtoapp ro a chth ePCPi fch ang e sin cogn i t iono rfun c t ion inga r eno t i c edino rd e rtobo thcomm en c et e s t ingandob t a ina d i agno s i sinat im e lym ann e r .I faPCPsu sp e c t sd em en t i a ,cogn i t iv et e s t ingu s ingv a l id a t ed too l ssu cha sth eM in iM en t a lS t a t eEx am(Ku r low i c z& W a l l a c e ,1999 )o rth eMon t r e a l Cogn i t iv eA s s e s sm en t(N a s r edd in e ,2016 )c anb ep e r fo rm ed ,a longw i thah i s to ry ,phy s i c a l ex am ,andd i agno s t i ct e s t ingtoru l eou to th e rc au s e so fcogn i t iv eimp a i rm en t(Gu id e l in e sand P ro to co l sComm i t t e e ,2014 ) . Th eNPu t i l i z e sh i so rh e rc l in i c a lsk i l l stod i agno s eandm an ag ed em en t i a .Ju s ta s impo r t an t ly ,NP smu s tu s eh i so rh e rexp e r tcommun i c a t ionsk i l l stos en s i t iv e lysh a r eth e d i agno s i sw i thth ep a t i en tandICPWD .I ti sr e comm end edth a tth eNPen cou r ag eth ep a t i en t tob r ingt ru s t edf am i lym emb e r sw i thth emdu r ingth ed i agno s i ss t ag eino rd e rtosh a r e in fo rm a t ionanda c ta ssuppo r t s .Th et im eo fd i agno s i si so f t enin c r ed ib lyd i f f i cu l tandth e NPmu s tp rov id ead equ a t et im efo rth ef am i lytop ro c e s sth ed i agno s i sandtoa skth e i r qu e s t ion s .M anyICPWDinth el i t e r a tu r ed e s c r ib edn eg a t iv eexp e r i en c e sdu r ingth e d i agno s t i cp ro c e s sdu etopoo rcommun i c a t ionandal a cko fexp e r t i s einsuppo r tp rov i s ion . NP sc anu t i l i z eth e i rexp e r tknow l edg eandsk i l ltop rov id eICPWDw i thth esuppo r tth ey r equ i r edu r ingth i sd i f f i cu l tt r an s i t ion . Endo fl i f ep lann ing .ICPWDinSh an l eye ta l . ’ s(2 011 )s tudyr epo r t edan e edfo r p a l l i a t iv ec a r ein fo rm a t ionino rd e rtob e t t e rp r ep a r efo rth ed e a tho fth e i rlov edon e .A s d em en t i ai sp rog r e s s iv eandin cu r ab l e ,y e tm ayp rog r e s sov e rm anyy e a r s ,th equ e s t iono f wh entop rov id eendo fl i f ein fo rm a t ionb e co m e sch a l l eng ingfo rPCP s .Th eSNS(2010 ) r e comm end edconn e c t ingth eICPWDandc a r er e c ip i en tw i thp a l l i a t iv ec a r es e rv i c e sbu t do e sno ta c tu a l lysp e c i fywh entos t a r tp rov id ingend o f l i f ein fo rm a t ion .Coomb se ta l . 113   (2015 )s t a t eth a tm any“ C an ad i anl e ad e r sf romnon gov e rnm en t a lo rg an i z a t ion s ,nu r s ingand gov e rnm en t a ls e c to r sa r er e comm end ingap a l l i a t iv eapp ro a chb eemb edd edin top r im a ry c a r e ”(p .3 ) .Ino rd e rtob e s tsuppo r tICPWD ,h e lp ingth emtop r ep a r efo rth efu tu r ei s e s s en t i a l .Th e r e fo r e ,i ti sr e com m end edth a tp a l l i a t iv ec a r ep l an sandin fo rm a t ionsh a r ing b eg ina td i agno s i s .A l thoughi tm igh ts e emto oe a r lytocomm en c eap a l l i a t iv eapp ro a cha t th a tt im e ,C a r s t a i r s(2010 )s t a t e sth a tp a l l i a t iv ec a r eid e a l lys t a r t sa td i agno s i so fach ron i c , t e rm in a lcond i t ionandcon t inu e sun t i ld e a th .I tm ays e emcoun t e r in tu i t iv etocomm en c e p a l l i a t iv ec a r ea td i agno s i sa sm anyind iv idu a l sw i thd em en t i aw i l lcon t inu etol iv efo rm any y e a r s ;how ev e r ,adv an c edc a r ep l ann ingw i thr e sp e c ttom ed i c a l ,f in an c i a l ,andl eg a l d e c i s ion si sb e s ts t a r t ede a r lywh i l eth ec a r er e c ip i en ti ss t i l lab l etop a r t i c ip a t eind e c i s ion m ak ing .Coomb se ta l .(2015 )s t a t eth a tNP sc anp romo t eth i sin t e rp ro f e s s ion a lapp ro a ch th roughth e i rl e ad e r sh ipab i l i t i e s . Suppo r tdu r ingo f f i c evi s i t s .InT e e landC a r son ’ s(2003 )s tudy ,ICPWDp rov id ed ex amp l e so fwh a tPCP scou lddotob e t t e rd emon s t r a t eev id en c eo fsuppo r t .Th e s e sugg e s t ion sin c lud eda l low ingsu f f i c i en tt im edu r ingo f f i c ev i s i t stosp e akw i t hth ec a r eg iv e r a lon e ,l i s t en ingtoth ec a r eg iv e r s ,anda sk ingqu e s t ion sabou tth ec a r eg iv ingexp e r i en c e .On e c a r eg iv e rs t a t ed“ Ir e a l lyw i shth ey[PCP s ]wou ldt a lktoth ef am i lys ep a r a t e ly .You ’ r eno t g e t t ingt im etot e l lwh a t ’ sh app en ing ,bu tyou ’ r ea l sono th av ingyou rexp e r i en c e sv a l id a t ed byth ep ro f e s s ion a l ”(T e e l&C a r son ,2003 ,p .51 ) . Ad e lm an ,Tm anov a ,D e lg ado ,D ion ,andL a ch s(2014 )r e comm endth a tPCP sshou ld p e r fo rmmo r ec a r eg iv e ra s s e s sm en t sinp r a c t i c e .How ev e r ,th eau tho r sr e cogn i z eth a tth e comp l e t iono facomp r eh en s iv ec a r eg iv e rn e ed sa s s e s sm en ti sno tn e c e s s a r i lyf e a s ib l ein mo s tp r im a ryc a r es e t t ing sdu etot im econ s t r a in t sandag en e r a ll a cko fr e sou r c e s .In 114   add i t ion ,i fth ec a r eg iv e ri sno tap a t i en to fth ePCP ,th el a cko ff in an c i a lcomp en s a t ionfo r th ePCPandth epo s s ib i l i tyth a tcon f id en t i a l i tyi s su e sm aya r i s ec ana l sob eo fcon c e rn . How ev e r ,th ePCPshou lda l lowenought im edu r ingth eo f f i c ev i s i ttoexp lo r eth e c a r eg iv e r ’ sw e l l b e ing ,n e edfo rsuppo r t s ,andadd r e s sanyi s su e sth a tm ayb er a i s edbyth e in fo rm a lc a r eg iv e r(Ad e lm ane ta l . ,2014 ) .So c i a lsuppo r tc anb ea s s e s s edbya sk ingabou t th eICPWD ’ ssuppo r tn e two rko fr e sou r c e s ,fun c t ion a lsuppo r t ssu cha shom esuppo r t ,and howth eyp e r c e iv etho s esuppo r t sav a i l ab l etoth em .I fth ec a r eg iv e ri sno tap a t i en to fth e PCP ,af ews imp l equ e s t ion sc anb eu s edtoen cou r ag eth ec a r eg iv e rtos e ekh e lpf romth e i r ownPCPi fsu cha s s i s t an c ei sn e ed ed : •  “Top rov id eth ev e ryb e s tp a t i en tc a r e ,If indIn e edtoa l sop aya t t en t iontomy p a t i en t s ’c a r eg iv e r s .C anyout e l lm eab i tabou thowyoua r ef e e l ing /do ing ? ” •  “W eknowth a tc a r eg iv e r so f t enn eg l e c tth e i rownh e a l th . Wh enw a sth el a s tt im eyou s awyou rphy s i c i an ? ” •  “Doyouh av eyou rownphy s i c i an ?I ssh eo rh eaw a r eo fyou rc a r eg iv ings i tu a t ion ? Wh a th a ssh eo rh eadv i s edabou ti t ? ”(Ad e lm ane ta l . ,2014 ) . I f ,how ev e r ,th ec a r eg iv e ri sa l soap a t i en to fth ePCPandth ec a r er e c ip i en tag r e e s , th enanappo in tm en tfo rth ec a r eg iv e rcou ldb es ch edu l edimm ed i a t e lya f t e rth a to fth ec a r e r e c ip i en ttoad d r e s scon c e rn sr a i s eddu r ingth a tf i r s tappo in tm en t .Anad j a c en tappo in tm en t no ton lyp r ev en t sv a lu ab l et im eb e ingt ak enaw ayf romth ec a r er e c ip i en t ’ sv i s i t ,bu ta l low s fo rth ec a r eg iv e r ’ scon c e rn stob eadd r e s s edimm ed i a t e ly ,th e r ebyv a l id a t ingth ec a r eg iv e r ’ s exp e r i en c e s .Sep a r a t ebu tad j a c en tappo in tm en t sa l soa l lowfo rth esh a r ingo fin fo rm a t ion th a tm igh tno to th e rw i s eh av eb e enm en t ion eddu r ingth ec a r er e c ip i en t ’ sappo in tm en t ,su ch a sf e e l ing so fbu rd eno ragg r e s s ionbyth ec a r er e c ip i en t .Inadd i t i on ,p rov id ingad j a c en t 115   appo in tm en t sm e an sth a tth ec a r eg iv e rw i l lno th av etocon t endw i tho rg an i z ingadd i t ion a l t r an spo r t a t ionr equ i r em en t sno rw i then su r ingsup e rv i s ionfo rth ec a r er e c ip i en t ,th e r eby d e c r e a s ings t r e s sandbu rd en . I fth ec a r er e c ip i en tp r e s en tsa lon etoth ec l in i c ,e sp e c i a l lydu r ingth ee a r lys t ag e so f d em en t i a ,t h ePCPc anen cou r ag eh eo rsh etoin c lud eth ein fo rm a lc a r eg iv e rinc l in i cv i s i t s , ino rd e rtod ev e lops t rongp a r tn e r sh ip sandm ak esh a r edd e c i s ion swh i l eth ec a r er e c ip i en ti s s t i l lc ap ab l eo fdo ingso .NP sh av eth eab i l i tytod ev e lops t rongth e r ap eu t i cr e l a t ion sh ip s w i thth ec a r er e c ip i en tandth e i rin fo rm a lc a r eg iv e randc anf a c i l i t a t eno ton lyth esuppo r t sy s t em sth a ta r er equ i r ed ,bu ta l sop rov id eth eedu c a t ionandan t i c ip a to rygu id an c efo r ind iv idu a l swhoexp e r i en c eth i sjou rn ey . Th eu s eo fana log i e s .Ju s ta sth i sr ev i ewu s edth ejou rn eyan a logytogu id eth e r e ad e rth roughth ec a r eg iv ingexp e r i en c e ,th ePCPc anu s e l ayan a log i e stoa s s i s tth e c a r eg iv e rtob e t t e rund e r s t andth e i rexp e r i en c e s( andth ecommon a l i tyo ftho s eexp e r i en c e s ) . Fo rex amp l e ,toexp l a inth eimpo r t an c eo fa c c ep t ingsuppo r t iv es e rv i c e stoICPWD ,th ePCP m ayu s eanan a logysu cha sth efo l low ing :w h enap e r soni sonalongro adt r ipandh a sb e en d r iv ingfo rtoolong ,h eo rsh eb e com e sf a t igu ed . Wh enth ep e r sonr e a ch e sth epo in to f exh au s t ion ,h eo rsh en e ed stor e s to rth eym ayf a l la s l e epandb e com einvo lv edinamo to r v eh i c l ea c c id en t .Th es am eapp l i e stoc a r eg iv e r sonth e i rlongjou rn ey .Th eAu s t r a l i an gov e rnm en tag en cyT r an spo r tfo rN ewSou th W a l e s(2014 ) ,adop t edth es log an‘ s top , r ev iv e ,su rv iv e ’tocomb a tmo to rv eh i c l ea c c id en t sons t a t eh ighw ay sr e l a t edtod r iv e r f a t igu e .Th eadc amp a ign sen cou r ag edd r iv e r stos topev e rytwohou r sa ta“d r iv e rr ev iv e r ” s i t eand“ s topfo rab i s cu i tandacupo fBu sh e l l st e ao rco f f e e ”(T r an spo r tN ewSou th W a l e s , 2014 ,p a r a .3 ) .Th i spub l i cs a f e tyc amp a ignc anb eu s eda sam e t apho rtot e a chc a r eg iv e r s 116   abou twh e r eth e i r‘d r iv e rr ev iv e r ’s i t e sm igh tr e s id eandwh enandhowtoa c c e s sth em .An ex amp l eo fid en t i fy inganda c c e s s ingsu char e sou r c em ayinvo lv eth ec a r eg iv e ra sk inga r e l a t iv etos t ayw i thth ec a r er e c ip i en tfo rtwohou r sev e ryF r id aysoth a tth ec a r eg iv e rc an m e e tw i thaw a lk ingg roup .Th i ssho r ttwohou rb r e ake a chw e ekm ayb ea l lth ec ar eg iv e r n e ed stor ev iv eino rd e rtosu rv iv eth ejou rn ey .PCP sc anexp l a intoc a r eg iv e r sth a t ,a tsom e po in tinth ejou rn eyev eni fth eya r es topp ingtor ev iv e ,th eym ayr e a chapo in to fexh au s t ion wh eni ti sun s a f efo rth emandth ec a r er e c ip i en tinth ec ari fth eycon t inu eonw i thou th e lp . Th eymu s tl e tsomeon ee l s eg e tb eh indth ewh e e landt ak eov e rth ed r iv ing ,ev eni fon lyfo r sho r tp e r iod so ft im e .Th i sm ayb einth efo rmo fin fo rm a lc a r esuppo r tf romf r i end so r f am i lym emb e r s ,o rfo rm a lsuppo r tsu cha shom esuppo r to rr e sp i t e . U s ingsu chanan a logym ayh e lpth ec a r eg iv e rtob e t t e rund e r s t andth en e c e s s i tyo f know ingwh entog e th e lpanda c c e s s ingth eh e lpwh eni ti sn e ed ed ,e sp e c i a l lyfo rtho s eth a t a r er e s i s t iv etor e l inqu i sh ingc a r eo fth ec a r er e c i p i en t .Fu r th e r ,b e ingp r ep a r ed ,know ing wh e r eth ed r iv e rr ev iv e rs i t e sa r eandh av ingth esuppo r t sa r r ang edinadv an c eo ff a t igu e s e t t ingin ,w i l lh e lptos a f egu a rdev e ryon eonth ejou rn ey .ICPWDc anth enb et augh tabou t s ign sandsymp tom so fs t r e s s ,bu rd e n ,f a t igu e ,andbu rnou tandh e a l thp romo t ions t r a t eg i e s top r ev en tth e s eadv e r s eou t com e s .   Imp rov ingexp e r i en c e sdu r ingt ran s i t iona lca r e .Mo s t ,i fno ta l l ,p e r son sw i th d em en t i aw i l lev en tu a l lyexp e r i en c et im einana cu t ec a r eo rlong t e rmc a r es e t t ing .M any c a r eg iv e r sh av em en t ion edd i f f i cu l t i e sth a tth eyen coun t e r edwh i l eth e i rlov edon ew a sinth e ho sp i t a l(Bough twoode ta l . ,2011 ;T e e l&C a r son ,2003 ) .On ec a r eg iv e rr epo r t edth a t “ho sp i t a lp e r sonn e ls e emtoh av ev e ryl i t t l eund e r s t and ingabou tA l zh e im e r ’ sandhowth e d i s e a s ea f f e c t sp eop l e ;th eywou ldt r e a th e rl ik esh ew a satyp i c a lp a t i en tw i thm emo ryand 117   cogn i t ion .Th eyn e ededu c a t ionabou thowtowo rkw i thA l zh e im e r ’ sp a t i en t s ”(T e e l& C a r son ,2003 ,p .52 ) .Sh an l eye ta l .(2011 )s t a t edth a t“ c a r e r sn e edtof e e lth a ts t a f fwholook a f t e rth e i rlov edon ea r eno tju s tp rov id ingm in im a lphy s i c a lc a r ebu ta r em ak ingane f fo r tto knowth ep e r sonanda r er e l a t ingtoth emonap e r son a ll ev e l ”(p .335 ) .ICPWDshou ldb e en cou r ag edtou t i l i z eth eTop5s t r a t eg y(C l in i c a lEx c e l l en c eComm i s s ion ,2016 )th a tw a s m en t ion edinCh ap t e rOn e ,andi sshowninApp end ixC ,toa l l ev i a t esom eo fs t r e s sinvo lv ed wh enc a r er e c ip i en tsa r eadm i t t edtoa cu t eo rlong t e rmc a r ef a c i l i t i e s .Th eNPa sPCPcou ld fo rmu l a t eac a r ep l anth a tc anb ec a r r i edbyth ep a t i en tand /o rf am i lym emb e rtop r e s en tto ano th e rc a r es e t t ingino rd e rtoop t im i z ec a r eou t com e s . Co l labo ra t iv eca r e.In t e r p ro f e s s ion a lco l l abo r a t iv ee f f o r t sa r eo f t enr equ i r edto m e e tth ecomp l exn e ed so fin fo rm a lc a r eg iv e r s(S chu l z& M a t i r e ,2004 ) .B a s edonth e f ind ing sf romth el i t e r a tu r e ,aco l l abo r a t iv eapp ro a chtoc a r ei sr e comm end ed .Inp r im a ry c a r ec en t r e sw i thanin t e rd i s c ip l in a ryt e am ,NP s ,So c i a l Wo rk e r sandR eg i s t e r edNu r s e sm ay a l lp l ayimpo r t an tro l e sinp rov id in gsuppo r tandedu c a t iontoICPWD ,a sw e l la scomp l e t ing comp r eh en s iv ein fo rm a lc a r eg iv e ra s s e s sm en t s(Ad e lm an ,2014 ) .Ano t ab l eex amp l eo fth i s typ eo fco l l abo r a t iv ec a r ei sth ec a r eg iv e rsuppo r tp rog r amrunbyanNP ,d i e t i c i an ,so c i a l wo rk e r ,andr eg i s t e redp sy ch i a t r i cnu r s ea tL ak eh e adNP L edC l in i cinThund e rB ay , On t a r io(L ak eh e adNu r s eP r a c t i t ion e rL edC l in i c ,2010 ) .Th i sf r e e,s ix w e eklong1 .5h our p e rw e ekp rog r amp rov id e sin fo rm a lc a r eg iv e r sw i thedu c a t ionandsk i l l stoh e lpth em th roughth e i rjou r n ey .Th i styp eo fp rog r amno ton lyp rov id e sanex c e l l en tsou r c eo fsuppo r t fo rICPWDbu ti ta l sofo s t e r spo s i t iv ein t e rp ro f e s s ion a lr e l a t ion sh ip s . In t e r ag en cyco l l abo r a t ioni sp a r amoun ttoe f f e c t iv e lysuppo r tICPWD .PCP sm ay r e f e rth ec a r er e c ip i en ttoh om esuppo r ts e rv i c e s ,r e f e rtoanadu l td ayp rog r am ,o rconn e c t 118   th eICPWDtoth eA l zh e im e rSo c i e tyo fB r i t i shCo lumb i ao ro th e rlo c a lch ap t e ro fa d em en t i asuppo r tg roup .B a s edonth eov e rwh e lm ing lypo s i t iv es en t im en t sth a tICPWD h av esh a r edinth el i t e r a t u r er eg a rd ingth eb en e f i to fc a r eg iv e rsuppo r tg roup s ,r e f e r r a ltoa lo c a lsuppo r tg roupa td i agno s i si sr e comm end ed .Th eNPa lon ei sav i t a lsou r c eo fsuppo r t fo rICPWDinm anyw ay s ,y e taco l l abo r a t iv ee f fo r ti sv e ryo f t enn e c e s s a rytomo r e comp l e t e lym ee tth en e ed so fICPWD . Fam i lyc en t r edapp roa chtoca r e .Th roughr ev i ewo fth el i t e r a tu r e,i tb e c am e ev id en tth a tap e r sonandf am i ly c en t r edapp ro a chshou ldb eimp l em en t edinp r a c t i c ea s “ p e r son-andf am i ly c en t r edc a r efo cu s e sonth ewho l ep e r sona saun iqu eind iv idu a landno t ju s tonth e i ri l ln e s so rd i s e a s e ”(R eg i s t e r edNu r s e s ’A s so c i a t iono fOn t a r io[RNAO ] ,2015 , p .8 ).Th eC an ad i anpub l i ch e a l thc a r esy s t emi smov ingtow a rd saf am i lyc en t r edapp ro a ch toc a r er a th e rth anfo cu s ingonth esy s t emandPC P s(RNAO ,2015 ) .Inv i ew ingth eICPWD th roughth i sl en s ,PCP sm ayg a inb e t t e rund e r s t and ingo fth ec a r eg iv e r ’ sowns to ry ,th e i r h e a l thc a r eexp e r i en c e s ,and howth eym ayh e lpth ep e r sonw i thd em en t i atom a in t a inth e i r h e a l th(RNAO ,2015 ) . Af am i lyc en t r edapp ro a cha l soen su r e sth a tICPWDa r er e cogn i z ed ,a cknow l edg ed andin c lud edinth ec a r ep l ann ingfo rth ep e r sonw i thd em en t i a .Fu r th e r ,u t i l i z a t iono fth i s app ro a chfo s t e r spo s i t iv er e l a t ion sh ip s ,r e sp e c t ,andcu l tu r a l lycomp e t en tc a r eth a ti s r e spon s iv et oth en e ed so fbo thth eICPWDandc a r er e c ip i en t(A c c r ed i t a t ionC an ad a ,2013 ) . Ex amp l e so faf am i lyc en t r edapp ro a chin c lud e :en su r ingaf am i lym emb e ri sw i thth ec a r e r e c ip i en tdu r ingd i agno s i sandappo in tm en t sfo l low ingd i agno s i s ,a s s e s s ingth ep sy cho so c i a l n e ed so fbo thth eICPWDandc a r er e c ip i en ta ta l lappo in tm en t s ,ando rg an i z ingf am i ly m e e t ing stod ev e lopc a r ep l an sth a tcon s id e rin fo rm a t ionsh a r edb e tw e enf am i lym emb e r s 119   andm emb e r so fth eh e a l thc a r et e am . Fam i ly m e e t ing s.F am i lym e e t ing sa r er e com m end edfo rs ev e r a lr e a son s .F i r s t , th e s em e e t ing sembodyaf am i ly c en t r edapp ro a chtoc a r ea sth eyinvo lv ef am i lyandf r i end s whoa r ep a r to fth el iv e so fth eICPWDandc a r er e c ip i en t .F am i lym e e t ing sa l lowfo r sh a r ingo fin fo rm a t ionth a tm ayno tb esh a r eddu r ingano f f i c ev i s i t .In t e rd i s c i p l in a ryf am i ly m e e t ing sc ancon t r ibu t etoth ed ev e lopm en to fe f f e c t iv ec a r ep l an sth a tb e s tm e e tth en e ed s o fbo thICPWDandc a r er e c ip i en t s .Su chm e e t ing sm aya l soh e lptoa l l e v i a t esom ef am i ly con f l i c ta sth eyg iv eth eICPWDanoppo r tun i tytovo i c eth e i rn e edfo rsuppo r tf romtho s e f am i lyandf r i end swhoa t t endth em e e t ing .Fu r th e r ,PCP sc anr e i t e r a t eth en e edfo rin fo rm a l andfo rm a lsuppo r tfo rth eICPWD ,th ec a r er e c ip i en t ,ando th e rpo t en t i a lsuppo r tp e r son sa t t h em e e t ing .O f t en ,i fs u char equ e s ti sm ad ebyaPCPr a th e rth anth eICPWD ,o th e r sm ay b emo r ein c l in edtoh e lp(Ad e lm ane ta l . ,2014 ;B a rn a rd&Y a f f e ,2012 ) .F am i lym e e t ing s c ana l sop rov id eth eoppo r tun i tyfo rar e sp i t ep l antob ed ev e lop edb e tw e enf am i lyand f r i end s ,a sw e l la sanem e rg en cyr e sp i t ep l ani fth ec a r eg iv e ri sho sp i t a l i z ed ,fo rex amp l e . Th e r ea r enor e comm end a t ion sinth el i t e r a tu r er e l a t edtoth et im ingo ff am i lym e e t ing s .I ti s th e r e fo r eimpo r t an ttoa s s e s sth es i tu a t ionando f f e rt im e lyf am i lym e e t ing songo inga sth e n e ed sch ang eov e rt im e . R e comm enda t ion sfo rEdu ca t ion Edu ca t ionfo rICPWD .C a r eg iv inginth econ t ex to fd em en t i ai sno tap r ed i c t ab l e jou rn ey(G a lv in ,Tod r e s ,&R i ch a rd son ,2005 ) .C e r t a inch a l l eng e sands t r e s so r sc anno tev e r b een t i r e lyp r ev en t ed ;how ev e r ,anim po r t an ta sp e c to fanyjou rn eyinvo lv e san t i c ip a t ingand app rop r i a t e lyp l ann ingfo rwh a tm ayl i eah e ad .Th eov e r a l lc a r eg iv ingexp e r i en c e so f ICPWDc anb econ c ep tu a l i z eda smov ingth roughs ev e r a lph a s e sa sth ed em en t i a 120   p rog r e s s e s ,e a chw i thp a r t i cu l a roppo r tun i t i e sfo re f f e c t iv ein t e rv en t ionandsuppo r tbyPCP s (P ro roke ta l . ,2013 ) . An t i c ipa to r ygu idan c e .P r ep a r ingc a r eg iv e r sth roughedu c a t ionfo re a chs t ag eo f d em en t i ac anp rov id eth emw i thth er e sou r c e sth eyn e edtom an ag etho s ei s su e sth a tw i l l in ev i t ab lyo c cu r .Th el i t e r a tu r ed emon s t r a t e sth a tICPWDn e edongo ingin fo rm a t ion th roughou tth ec a r eg iv ingjou rn ey ,no tju s ta td i agno s i s .A l lPCP sc ane f f e c t iv e lyu t i l i z e an t i c ip a to rygu id an c etop r ep a r eICPWDfo rwh a tm ayl i eah e adinth e i rjou rn eyandth e r eby m ak eth ein ev i t ab l ech a l l eng e ss e eml e s sin su rmoun t ab l e . An t i c ip a to rygu id an c eshou ldb ep rov id edtoa l lICPWD ,r eg a rd l e s si fth eya r ea p a t i en to fth ePCPo rno t .On em aycomp a r eth eo f f i c ev i s i to fap a t i en tw i t hd em en t i aand th e i rin fo rm a lc a r eg iv e rtoth a to faw e l l ch i lda s s e s sm en t .Fo rex amp l e ,th ech i ldwou ldb e a c comp an i edbyac a r eg iv e rwhom ayno tb eap a t i en to fth ePCP .Th ec a r eg iv e rm ayb ea p a r en t ,g r andp a r en t ,o rp e rh ap safo s t e rp a r en t .R eg a rd l e s so fth ec a r eg iv e r ’ sb a ckg round , th ePCPwou lda skth ec a r eg iv e rqu e s t ion sabou tpo t en t i a ls a f e tyh a z a rd sinth ehom e , f am i lydyn am i c s ,f am i lycon f l i c t ,s t r e s s ,c a r eg iv e rf a t igu e ,s l e ephyg i en e ,andd ep r e s s ion , andwh e th e rth ec a r eg iv e rh adanycon c e rn sabou tc a r eo fth ech i ld(Rou rk e ,L edu c ,& Rou rk e ,2014 ) .S im i l a r ly ,qu e s t ion scou ldb ea sk edo fth eICPWDtoen su r es a f e tyo fth e c a r er e c ip i en ta sw e l la stoen su r eth eICPWDi sapp rop r i a t e lysuppo r t ed .Th ech a l l eng e a s so c i a t edw i thd em en t i ai sth a tind iv idu a l smov eth roughth es t ag e so fd em en t i aa td i f f e r en t r a t e s .Th roughr egu l a rfo l low upappo in tm en t sandd i s cu s s ion sw i thICPWD ,PCP sm ay d e t e rm in ewh enth ep a t i en tw i thd em en t i ai st r an s i t ion ingth roughs t ag e so fd em en t i aandb e ab l etop rov id eth eICPWDw i thapp rop r i a t ein fo rm a t iona tth eb e s tpo s s ib l et im e .En su r ing th a tr e sou r c e sa r ep rov id edtoICPWDe a r lyinth ed em en t i at r a j e c to ry ,andth ena tr egu l a r 121   in t e rv a l sth roughou tth ejou rn ey ,w i l lh e lpICPWDtoad equ a t e lyp r ep a r efo rth efu tu r eand tof e e lsuppo r t eda longth ew ay . Edu ca t ionfo rPCP s.P r in c e ,L iv ing s ton ,andK a ton a(2007 )r em indu sth a t sp e c i a l i s t s ,su cha sn eu ro log i s t s ,g e r i a t r i c i an s ,andp sy ch i a t r i s t s ,a r ear e l a t iv e lys c a r c e r e sou r c e(p a r t i cu l a r lyinru r a landr emo t ecommun i t i e s )whoa r emo s to f t enun ab l eto p rov id ef ron t l in ed em en t i ac a r eandc a r eg iv e rsuppo r t .Th e r e fo r e ,PCP sho ldac r i t i c a l r e spon s ib i l i tytom a in t a inex t en s iv eandcu r r en tknow l edg eabou td em en t i aandcommun i ty r e sou r c e s .Ino rd e rtop romo t eknow l edg er eg a rd ingc a r eg iv ingi s su e sandev id en c e b a s ed p r a c t i c ew i thr eg a rd stoth et r e a tm en tandm an ag em en to fd em en t i a ,PCP sa r een cou r ag edto p a r t i c ip a t eincon t inu ingedu c a t ionth roughr e ad ingr e s e a r chanda t t end ingcon f e r en c e s ,fo r ex amp l e .PCP sc anth ensh a r eth i sknow l edg ew i tht h e i rp e e r sinv a r iou sw ay s ,su cha s g ra ndround s ,jou rn a lc lub s ,con f e r en c ep r e s en t a t ion s ,pub l i c a t ion s ,o ron l in ep e e r n e two rk ingg roup s .Fo rin s t an c e ,som eNP sinB r i t i shCo lumb i ap r e s en ton l in ew eb in a r sto o th e rNP sw i th inth ep rov in c eino rd e rd i s s em in a t ein fo rm a t ionabou tv a r iou sm ed i c a l top i c s .Sh a r ingknow l edg ec ancon t r ibu t etoimp rov ingp rov id e r ’ sa t t i tud e sandp r io r i t i e s tow a rd sd em en t i ac a r eandb e t t e rsuppo r t ingICPWD .Imp rov edknow l edg eo fd em en t i aand c a r eg iv inga l sofo s t e r sth e r ap eu t i cr e l a t i on sh ip sandin sp i r e sg r e a t e rcon f id en c einth e c a r eg iv e r .On ec a r eg iv e rs t a t edth a t“Anyon ewhoi sa[p ro f e s s ion a l ]c a r eg iv e rough ttoh av e cu r r en tin fo rm a t iononwh a ti sh app en inginth ed rugindu s t ry ,n ewp i l l s ,n ewm ed i c a t ion , n ewth ing sth a ta r ecom ingou t b e c au s eth a tk indo fl i f t syouupal i t t l e ”(T e e l&C a r son , 2003 ,p .52 ) . Edu ca t ionfo rth epub l i c .In c r e a s ingpub l i caw a r en e s so fth epo t en t i a l m an i f e s t a t ion so fd em en t i a ,a sw e l la sth ech a l l eng e sw i thwh i chICPWDm aycon t end ,h a s 122   s ev e r a limp l i c a t i on s ,in c lud ing d e c r e a s ingth es t igm aa t t a ch edtod em en t i aandd e c r e a s ing f e e l ing so fso c i a li so l a t ionfo rICPWD .K eya r e a so fl a cko faw a r en e s sin c lud er i skf a c to r s fo rd em en t i a ,p a thophy s io logyo fd em en t i a ,l iv ingw i thd em en t i a ,t r e a tm en t s ,e a r lyand symp tom so fd em en t i a ,and ,v e ryimpo r t an t ly ,w h entos e ekp ro f e s s ion a lh e lp(A l zh e im e r ’ s So c i e ty ,2009 ) .T e e landC a r son(2003 )sugg e s tth a tin c r e a s ingpub l i caw a r en e s sh a sb e en su c c e s s fu l lyconv ey eda sam e an stoimp rov eth equ a l i tyo fc a r efo rp a t i en t sw i th d ep r e s s ion ;thu s ,s im i l a rapp ro a ch e scou ldb eu s edtos im i l a r lyb en e f i tICPWD .S ev e r a l s t r a t eg i e scou ldb eimp l em en t edino rd e rtor a i s epub l i caw a r en e s s .Fo rex amp l e ,PCP s cou ldho ldcommun i tyedu c a t ions e s s ion s .Adc amp a ign scou ldb erunth roughv a r iou styp e s o fm ed i a ,in c lud ingn ew sp ap e r s ,t e l ev i s ion ,andso c i a lm ed i aon l in es i t e s .Ch a r i t ab l eev en t s a r eano th e rw aytor a i s ebo thaw a r en e s sandfund ingtosuppo r tin fo rm a lc a r eg iv e r sand p e r son sw i thd em en t i a . R e comm enda t ion sfo rR e s ea r ch Th el a cko fh ighqu a l i tyr e s e a r chandth eab s en c eo fgu id e l in e sp e r t a in ingtoICPWD h igh l igh tth eex i s t en c eo fs ign i f i c an tr e s e a r chandp r a c t i c eg ap s .Ov e rth ep a s ttw en tyy e a r s , as ign i f i c an tamoun to fl i t e r a tu r eh a sb e enw r i t t enabou tin fo rm a lc a r eg iv e rbu rd enandth e ad v e r s ee f f e c t sth a tc a r eg iv ingc anh av eonth ein fo rm a lc a r eg iv e r . Mo r er e c en t ly ,qu a l i t a t iv e r e s e a r chh a sexp lo r edth ec a r eg iv ingexp e r i en c e so fICPWDandr e s e a r ch e r sh av e inv e s t ig a t edth ee f f e c t iv en e s so fin t e rv en t ion sbym e a su r ingou t com e ssu cha sbu rd en , d ep r e s s ion ,andQOL .Y e tth equ an t i t a t iv el i t e r a tu r eh a sf a i l edtoev a lu a t eag lob a lm e a su r e o fth eov e r a l lc a r eg iv ingexp e r i en c e .Th eimp l em en t a t iono fm ix edm e thods tud i e sm ayb e u s e fu lind e t e rm in inghowe f f e c t iv efo rm a lin t e rv en t ion sa c tu a l lya r ea timp rov ingth e c a r eg iv ingexp e r i en c efo rICPWD .Add i t ion a l ly ,long i tud in a ls tud i e sexp lo r ingth e 123   exp e r i en c e so fICPWDov e rth een t i r ed em en t i ajou rn eywou ldp rov id ev a lu ab l ein fo rm a t ion abou tth ech ang ingn e ed sth roughth ed i s e a s et r a j e c to rytoin fo rmth et im ingo fa s s e s sm en t andin t e rv en t ion s . M a l eICPWDandCALDICPWDa r eno t i c e ab lyund e rr ep r e s en t edinc a r eg iv ing r e s e a r ch .M anyin t e rv en t ion sh av et a rg e t edp r im a r i lyf em a l e ,C au c a s i anpopu l a t ion sf rom n eu ro logyo rm emo ryc l in i c s .I ti sd i f f i cu l ttod e t e rm i n ewh e th e ro rno tth e s es am e in t e rv en t ion swou ldb ee f f e c t iv efo rm ino r i tyo rm a l eICPWD(Au s t rome ta l . ,2006 ) . Fu r th e rr e s e a r chfo cu s ingonth e s eg roup si sr e comm end edino rd e rtog a inab e t t e r und e r s t and ingo fg end e randcu l tu r a ld i f f e r en c e sw i th inth ec a r eg iv ingexp e r i en c e .L ik ew i s e , mo r ein t e rv en t ionr e s e a r chi sn e ed edw i thth e s eg roup stod e t e rm in ewh e th e rou t com e s d i f f e rincomp a r i sontoth ep r im a ryC au c a s i an ,e ld e r lyf em a l es tudys amp l e s .G a in ingth e p e r sp e c t iv e so fm a l ein fo rm a lc a r eg iv e r si so fp a r t i cu l a rimpo r t an c e ,s in c ea lmo s th a l fo f C an ad i anc a r eg iv e r sa r em a l e(E a l e se ta l . ,2015 ) .A sC an ad i ans tud i e sonth eexp e r i en c e so f ICPWDi sno t ab lyl a ck ing ,fu r th e rr e s e a r chi sn e ed edtod ev e lopanin d ep thund e r s t and ing o fth e s eexp e r i en c e sinaC an ad i ancon t ex tinwh i chtoin fo rmpo l i cyandp r a c t i c e .High qu a l i tyqu an t i t a t iv er e s e a r chinv e s t ig a t ingp r im a ryc a r e b a s edin t e rv en t ion si sn e ed edto suppo r tev id en c e b a s edp r a c t i c ea sw e l la stod ev e lopc l in i c a lp r a c t i c egu id e l in e sth a ta r eno t b a s edon lyup onmod e r a t equ a l i tys tud i e sandexp e r top in iono fgu id e l in ecomm i t t e e s . Fu r th e r ,mo r ein fo rm a lc a r eg iv e rr e s e a r chi sd e sp e r a t e lyn e ed edtoin fo rmth ed ev e lopm en t o fn ewc l in i c a lp r a c t i c egu id e l in e sth a ta r ea im eda tr e comm end ingev id en c e b a s edp r a c t i c e . 124   Con c lu s ion Th eexp e r i en c e so fmyownf am i lym emb e r sa sICPWD ,a sw e l la smyexp e r i en c e s a saReg i s t e r edNu r s ewhoh a sp rov id edc a r etoICPWDandc a r er e c ip i en t sinth ea cu t ec a r e s e t t ing ,l edtoth ed ev e lopm en to fth er e s e a r chqu e s t ion :howc anPCP sb e s tsuppo r tICPWD th roughth ed em en t i ajou rn ey ?Th i squ e s t ionw a san sw e r edth roughth er ev i ewo f30a r t i c l e s in c lud ing23qu a l i t a t iv e ,qu an t i t a t iv e ,o rm ix edm e thod ss tud i e s ,twosy s t em a t i cr ev i ew s , on er epo r t ,andfou rc l in i c a lp r a c t i c egu id e l in e s .R ev i ewo fth el i t e r a tu r eh a sg en e r a t edsom e impo r t an tcon t r ibu t ion stow a rdund e r s t and ingth el iv edexp e r i en c e sandn e ed so fICP WD andh a sp rov id edin s igh tin toth ef e a s ib i l i tyande f f e c t iv en e s so fsom ep r im a ryc a r e b a s ed in t e rv en t ion s .Th el i t e r a tu r er ev i ewun cov e r edg ap sinev id en c e b a s edp r a c t i c ew i thr e sp e c t toc a r eg iv e rsuppo r t . Th er e s e a r chf ind ing sh av ea f fo rd edin s igh tin toth eun iqu ech a l l eng e s ,a sw e l la s po s i t iv ea sp e c t s ,o fc a r eg iv ingth a tICPWDexp e r i en c e .A l thoughc a r eg iv e r sh av ed iv e r s e b a ckg round sandind iv idu a ln e ed s ,m anysh a r es im i l a rexp e r i en c e sth roughou tth e i r c a r eg iv ingjou rn ey .Inth el i t e r a tu r eICPWDc a r eg iv e r sd e s c r ib edf e e l ing so fun c e r t a in ty , f e a r ,andlon e l in e s s .Th eyd e s c r ib edd i f f i cu l t i e sw i thob t a in ingt im e lyd i agno s i sandw i th ob t a in ingsu f f i c i en tin fo rm a t ionf romPCP sr eg a rd ingc a r eg iv ingo rd em en t i a .M any c a r eg iv e r sexp e r i en c edf am i lycon f l i c ta sw e l la sin t e rp e r son a lcon f l i c ta sth eys t rugg l ew i th ro l ech ang e sandb a l an c ingth e i rownn e ed sw i thth en e ed so fth ec a r er e c ip i en t .M anya l so exp r e s s edd i f f i cu l tyinob t a in ingbo thin fo rm a landfo rm a lsuppo r t s .D ev e lop ingan und e r s t and ingo fth en e ed sandexp e r i en c e so fICPWDa f fo rd safound a t iononwh i chto con s t ru c te f f e c t iv eandsuppo r t iv ein t e rv en t ion sinp r im a ryc a r es e t t ing s . 125   Ino rd e rtod i s cov e re f f e c t iv ew ay stosuppo r tICPWD ,p r im a ryc a r e b a s ed in t e rv en t ion sw e r einv e s t ig a t ed .Su rp r i s ing ly ,th ef i nd ing si l lu s t r a t eth a tmo s to fth e p r im a ryc a r eb a s edin t e rv en t ion sr ev i ew eda r eno tn e c e s s a r i lye f f e c t iv eo rf e a s ib l efo r imp l em en t a t ionw i th inC an ad i anp r im a ryc a r es e t t ing s .Ev enmo r esu rp r i s ing ly ,no c l in i c a lgu id e l in e sw e r efoundth a tp e r t a intoICPWDsp e c i f i c a l lyandnon eo fth e r e comm end a t ion sinth er ev i ew edc l in i c a lp r a c t i c egu id e l in e sa r eb a s edonh ighqu a l i ty ev id en c e ,h igh l igh t ingac r i t i c a ln e edfo rfu r th e rr e s e a r chinwh i chtod ev e lopqu a l i ty C an ad i anev id en c eb a s edgu id e l in e s . B a s edonth efind ing sinth er ev i ew ,r e comm end a t ion sfo rp r a c t i c eandedu c a t ion w e r eid en t i f i ed .Th e s er e comm end a t ion sin c lud eth eu s eo fp e r sonc en t r edandf am i ly c en t r edapp ro a ch e stoc a r e ,an t i c ip a to rygu id an c e ,ho ld ingf am i lym e e t ing s ,c a r eg iv e r a s s e s sm en t ,r a i s ingpub l i caw a r en e s s ,andedu c a t ingPCP sabou td em en t i ac a r e . F in a l ly , fu r th e rr e s e a r chi sn e ed edtoexp lo r eth eexp e r i en c e so fbo thm a l eandCALDICPWDin p a r t i cu l a randtoin fo rmc l in i c a lp r a c t i c egu id e l in e sandev id en c e b a s edp r im a ryc a r e p r a c t i c e . 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Imp a i r edphy s i c a l Ox id a t iv es t r e s so c cu r s fun c t ion ing w i th inc e l lu l a rs t ru c tu r e s Imp a i r edex e cu t iv e N eu ron a lc e l ld e a th fun c t ion ing C e r eb r a la t rophy V a s cu l a rd em en t i a Mo s to f t ena s so c i a t edw i th M ayb eab rup to rin s id iou s c e r eb r a lv a s cu l a ra c c id en t s , on s e t d i ab e t e sm e l l i tu s ,co ron a ry N eu ro log i c a ld e f i c i t s a r t e ryd i s e a s e ,hyp e r t en s ion , andp e r iph e r a la r t e ryd i s e a s e L ewyBodyd em en t i a A lph asynu c l e inp ro t e in F lu c tu a t ingcogn i t iv e imp a i rm en t foundinb r a inc e l l s M emo rylo s s D ev e lopm en to famy lo id p l aqu e sandn eu ro f ib r i l l a ry V i su a lh a l lu c in a t ion s t ang l e s . P a rk in son i sm F r equ en tf a l l s Syn cop e T r an s i en tlo s so f con s c iou sn e s s F ron to t empo r a ld em en t i a D am ag etoc e l l sinth e D i s inh ib i t ion (P i ck ’ sd i s e a s e ) f ron t a landt empo r a llob e s M emo rylo s s o fth eb r a in Lo s so fin s igh t C e r eb r a la t rophy Lo s so femo t ion a lcon t ro l T aupo s i t iv ein c lu s ion so r Sp e e ch / l angu ag ed i f f i cu l ty T aun eg a t iv ein c lu s ion s E a r l i e ron s e tth anAD (Ag am ano l i s ,2013 ;Bo s s ,2010 ) 153   App end ixB D em en t i aS t ag ingS c a l e s GDS S t ag e1 :Nocogn i t iv e d e c l in e(nod em en t i a ) No rma lfun c t ion ing ,no m emo r yimpa i rm en t S t ag e2 :V e rym i ld cogn i t iv ed e c l in e(no d em en t i a ) Noe v id en ts ymp tom s D em en t i aS t ag ingS c a l e s FAST S t ag e1 :No rm a ladu l t Nofun c t iona ld e c l in e CDR CDR0 :Nod em en t i a S t ag e2 :No rm a lo ld e radu l t CDR0 .5 :M i ld Som efun c t iona ld e c l in e , Con s i s t en ty e tn eg l ig ib l e ind i v idua li sawa r eo fsam e m emo r yimpa i rmen t ,da i l y fun c t ion ings l igh t l y ,m ino r d i f f i cu l t i e sw i thp rob l em so l v ing S t ag e3 :M i ldcogn i t iv e S t ag e3 :E a r lyd i s e a s e CDR1 :M i ld d e c l in e(nod em en t i a )M i ld No t i c eab l efun c t iona l Mod e ra t esho r tt e rm impa i rm en to fo c cupa t iona l m emo r yimpa i rm en t m emo r yimpa i rm en t ,and fun c t iona ld e c l in e .Fam i l y ta s k s a f f e c t ingda i l yfun c t ion ing , m emb e r sma yno t i c esub t l e mod e ra t ed i f f i cu l t i e sw i th chang e s p rob l emso l v ing ,d i f f i cu l t i e s A v e rag edu ra t ion :7y r s w i thcomp l e xta s k s ,unab l e toind ep end en t l ymanag e ta s k sinth ecommun i t y S t ag e4 : Mod e r a t ecogn i t iv e S t ag e4 :M i ldd i s e a s e CDR2 : Mod e r a t e d e c l in e( e a r lys t ag e R equ i r e sa s s i s tan c ew i th Mo r ep ro foundsho r tt e rm d em en t i a ) in s t rum en ta lta s k ssu cha s m emo r yimpa i rm en t , No t i c eab l esho r tt e rm pa y ingb i l l so rp lann ingan d i so r i en t ed ,poo rjudgm en t m emo r yimpa i rm en t , e v en t andp rob l emso l v ing , h ind e r edcon c en t ra t ion , r equ i r e sa s s i s tan c ew i th n e eda s s i s tan c ew i th da i l ya c t i v i t i e s ,ha sl i t t l e in s t rum en ta lta s k ssu cha s in t e r e s t s pa y ingb i l l s ,cogn i t i v e impa i rm en te v id en tdu r ing a s s e s sm en t A v e rag edu ra t ion :2y r s Tab l econ t inu e sonth en ex tpag e .   154 S t ag e5 : Mod e r a t e lys ev e r e S t ag e5 : Mod e r a t ed i s e a s e CDR3 :S ev e r e cogn i t iv ed e c l in e(m ids t ag e R equ i r e sa s s i s tan c ew i th S e v e r em emo r ylo s sand d em en t i a ) som eda i l ya c t i v i t i e ssu cha s cogn i t i v eimpa i rm en t , S e v e r em emo r yd e f i c i t s , choo s ingapp rop r ia t e d i so r i en t ed ,nojudgm en to r n e eda s s i s tan c ew i thda i l y c lo th ingandd r e s s ing p rob l emso l v ingab i l i t i e s , a c t i v i t i e ssu cha sd r e s s ing unab l etopa r ta k ein andba th ing ,p ro found a c t i v i t i e sinacommun i t y m emo r ylo s s,d i so r i en ta t ion s e t t ing ,o f t enin con t in en t , e v id en t r equ i r e sa s s i s tan c ew i tha l l A v e rag edu ra t ion :1 .5y r s da i l ya c t i v i t i e s S t ag e6 :S ev e r ecogn i t iv e S t ag e6 : Mod e r a t e lys ev e r e d e c l in e(m ids t ag e d i s e a s e d em en t i a ) R equ i r e sa s s i s tanc ew i tha l l S e v e r efun c t iona l da i l ya c t i v i t i e s ,e xp e r i en c e s impa i rm en t ,r equ i r e in con t in en c e a ss i s tan c ew i thmo s tta s k s , s e v e r e l yimpa i r edsho r t t e rmandlongt e rmm emo r y , in con t in en c ei scommon , p e r sona l i t ychang e s , ag i ta t ion ,d e lu s ion s , r ep e t i t i v eb eha v iou r sa r e common A v e rag edu ra t ion :2 .5y r s S t ag e7 :V e rys ev e r e S t ag e7 :S ev e r ed i s e a s e cogn i t iv ed e c l in e( l a t es t ag e P rog r e s s i v elo s so f d em en t i a ) p s y chomo to rfun c t ion ing R equ i r efu l la s s i s tan c ew i th su cha swa l k ingo rs i t t ing , a l lda i l ya c t i v i t i e s ,ma yha v e ma ylo s eab i l i t ytosp ea k lo s tsp ea k ingab i l i t yand mo r ethanapp ro x ima t e l ys i x p s y chomo to ra c t i v i t ysu ch wo rd s a swa l k ing A v e rag edu ra t ion :2 .5y r s (D eL eonandR e i sb e rg ,1999 ;D em en t i aC a r eC en t r a l ,2013 ; Mo r r i s ,1993 ;R e i sb e rg ,1982 ; S c l an&R e i sb e rg ,1992 ) 155   App end ixC Ex amp l eo fTop5S t r a t egy :G r andp a ’ sB iog r aphy Don M cKn igh t W i f efo rn e a r ly63y e a r s -Bunny D augh t e r–   L au r i e(D av e ) ,G r and son s–   T r evo r&Ry an Son–   R i ck( Joy c e ) ,G r andd augh t e r–   Am and a(L e e )G r e a tG r andd augh t e r–   E l l a Bo rnin W inn ip eg ,M an i tob a . Wo rk edfo rA i rC an ad afo rm anyy e a r s .U s edtob eanav id go l f e r . FoodL ik e s Co f f e ew i thSp l end aandi c ecub e s ,F r e shF ru i t(b an an a s ,p e a r ,g r ap e s ,b lu eb e r r i e s ) ,c r e amo f wh e a tw i thm i lkpou r edov e r ,v an i l l ai c ec r e amandpudd ing s ,s c r amb l edegg sw i thk e t chup andL emon M e ri ngu eP i e ! FoodD i s l ik e s Any th ingsp i cyo rsou r( c r anb e r ryJu i c e ) ,any th ingw i ths e ed s ,ch ewy / s t r ingym e a t ,Ho t (h e a t )food . Du r ingC a r e P l ea s eexp la inwha tyoua r edo ingfo rDonb e fo r eyoup e r fo rmanyca r eo rt r ea tm en t . H el ik e stob eapp roa ch edv e rba l lyb e fo r eb e ingtou ch edo r mayb e com eag i ta t eddu e tof ea ro rf ru s t ra t ion . Doni sw a i t ingfo rey esu rg e ryonh i sl e f tey e .Th es id ee f f e c t sth a th ecou ldpo s s ib lyb e exp e r i en c ingin c lud e(bu tno tl im i t edto )b lu r ryv i s ionandf lo a t e r s .Comb in edw i thh i s cogn i t iv ei s su e s ,som eo fh i sh a l lu c in a t ion sm igh tb eh i sb r a in ' sin ab i l i tytor e cogn i z eth i s . AB i tabou tDon :F avou r i t eP l a c e sandTh ing s •  Wa rmb lank e t sandb ighood i e s–   Doni sa lway sch i l l edandlov e stobek ep t wa rm . •  Hom e–   2r e c l in e r ss id ebys id e ,soh ec anho ldh and sw i thBunnywh i l eth eyw a t ch th ego l f e r sgobyth eap a r tm en tw indow . •  H ang ingou tp l ay ingc a rd sw i thh i sg r and ch i ld r en •  Squ i r r e l sonth eb i rdf e ed e rou t s id eth el iv ingroomw indow •  B a rb ado s •  Mu s i co fth e1940 ’ sand50 ’ s •  A f t e rnoonn ap s •  R e ad e r sd ig e s tandN a t ion a lG eog r aph i c Donha sb e env e r yfo r tuna t eandth i si sh i sf i r s te x t end eds ta yinho sp i ta l ,e v e r .Th e hum i l ia t iono fad ign i f i ed ,k ind ,g en t l ena tu r edp e r sontu rn ingo v e re v e r ya sp e c to fh i s p e r sona lca r emu s tb ev e r yd i s t r e s s ingtoh im(a si ti stoh i sw i f eandfam i l y ) ,cau s ingh im f ru s t ra t iontha tman i f e s t si t s e l finwa y stha th ewou ldb eappa l l eda t .Doni sav e r yp r i va t e , una s sum ingmanwhoha sn e v e rra i s edahandtoano th e rp e r son .Youma yh ea rh im r em in i s c eandta l kabou tth ep eop l eandth ing sl i s t edabo v e . 156   App end ixD A‘Ro ad M ap ’fo rth eD em en t i aJou rn ey :K eyR e comm end a t ion sfo rNPP r a c t i c e STAGESOF DEMENT IA S tag e s13 S tag e4 S tag e s56 S tag e7 Notom i ld cogn i t iv e d e c l in e E a r lyS t ag e M idd l eS t ag e s EndS t ag e Invo lv ed A l l En compa s s ing L ik e lyno h e lp r equ i r ed STAGESOF CAREG IV ING *w i thou t suppo r t **w i thsuppo r t SUPPORT IVE STRATEG IES H e lp ing (Al i t t l e mo r e h e lpth anu su a l ) Hom e / wo rkl i f em ayb e a f f e c t ed (m ayh e lpw i th m ed s /ADL s / T r e a tm en t s ) A f t e r P la c em en t o rD ea th o fth e Ca r e R e c ip i en t C lo s ing (m a jo r t r an s i t ion , (o f t en24 /7c a r e , m ays t i l l p rov id ec a r ew i th exp e r i en c e ADL s / IADL s , t r e s si fc a r e In t en s iv e m ed i c a ld e c i s ion s ) s r e c i p i e n t i n a ( comp l ex / in c r e a s ing *h ighr i sko f f a c i l i t y , m a y c a r en e ed s /mo s t bu rnou t /h e a l th exp e r i en c e o f t enlong e s ts t ag e ) . i s su e s ,so c i a l g r i e fand M ayexp e r i en c e i so l a t ion lo s s f am i lycon f l i c t , ** s en s eo f ighr i sko f emo t ion a lcon f l i c t , m a s t e ry / s t ab i l i z a t ion *h m en t a l s ign i f i c an two rk / l i f e h e a l thi s su e s imp a c t s ,i so l a t ion * * f i n d s a *h ighr i sko f “n ew bu rnou t /h e a l th n o r m a l ” i s su e s m a y ** comp e t en c eand con s id e r s t r eng t h advo c a cy ro l e Ra i s epub l i c T im e l yd iagno s i s P ro v id e En su r eICPWDa r e Emo t iona l awa r en e s sand in fo rma t ionand conn e c t edw i th suppo r t edu ca t ion Emo t iona l en cou rag ehom e s e r v i c e s suppo r tdu r ing suppo r t s / r e sp i t e g r i e f M ed ia d iagno s i s ICPWDa s s e s sm en t coun s e l l ing campa ign s ICPWD tod e t e rm in e R e f e r ra lto a s s e s sm en tto chang ingn e ed sand R e f e rto D i s ea s e sp e c ia l i s t /m emo r y d e t e rm in echang ing con c e rn s /h ea l th suppo r t (d em en t ia ) c l in i ci fcomp l e x n e ed s /h ea l thi s su e s i s su e s g roup p r e v en t ioneg . ca s e r e f e rtoPCPi f r e f e rtoPCPi f B ra int ra in ing ICPWDno tap t . ICPWDno tap t . A s s e s sfo r a c t i v i t i e s ,r eg . ICPWD con c e rn s e x e r c i s e , a s s e s sm en tto Ho ldfam i l y Ho ldfam i l y /h ea l th h ea l th yd i e t , d e t e rm in en e ed s m e e t ing m e e t ing i s su e s smo k ing r e f e rto c e s sa t ion R e f e r ra lto P ro v id eemo t iona l En su r ead van c ed PCPi f suppo r tg roup suppo r t ca r ep lani sinp la c e ICPWDno t ap t . P ro v id e En su r ead van c ed En su r eem e rg en c y commun i t y ca r ep lani sin p lani sinp la c e r e sou r c el i s t p la c e Edu ca t ion 157         P ro v id el in kto A l zh e im e r ’ s o rgan i za t ion Ho ldfam i l y m e e t ing C r ea t ean em e rg en c yp lanin ca s eICPWDi s ho sp i ta l i z ed /awa y En cou rag eu s eo f 811Nu r s eL in eo r A l zh e im e r ’ s suppo r tl in efo r a f t e rhou r s em e rg en c yad v i c e Comm en c e ad van c edca r e p lann ing L in kw i th r e sou r c e sfo r f inan c ia l / l ega l p lann ing eg .N IDUS En su r eem e rg en c y -b eha v iou r p lani sinp la c e manag em en t mon i tor ing Edu ca t ion fo rd e l i r ium (an t i c ipa to r y sa f emanua l gu idan c e ) hand l ing d r i v ing hom esa f e t y -b eha v iou r s e l f ca r e manag em en t cop ing mon i to r ingfo r s t ra t eg i e s d e l i r ium hom esa f e t y In vo l v e s e l f ca r e pa l l ia t i v eca r e cop ings t ra t eg i e s t eamfo rendo f sa f emanua l l i f ep lann ing   hand l ing En cou rag e ca r eg i v ings k i l l s / edu ca t ion p rog rami f a va i lab l e Coun s e l l ing r ega rd ing an t i c ipa to r yg r i e f En cou rag e h ea l th yl i f e s t y l e cho i c e s (d i e t / e x e r c i s e / s t r e s s manag em en t ) En cou rag eth e ca r er e c ip i en tto con t inu er egu la r a c t i v i t i e ssu cha s hobb i e sfo ra slong M ed i ca t ionr e v i ew a spo s s ib l e En su r eICPWDi s En cou rag eh ea l th y l in k edw i tha l i f e s t y l echo i c e s suppo r tg roup (d i e t / e x e r c i s e / s t r e s s   manag em en t )   M ed i ca t ionr e v i ew Edu ca t ion : d em en t ia s t r e s sandcop ing s e l f ca r e /h ea l th d r i v ing (E l i z z ,2015 ) Coun s e l l ing r ega r d ing chang ing r e la t ion sh ip s   158   App end ixE   R e c o rd sid e n t i f i e dth rough d a t a b a s es e a r c h ing (n=3 ,603 )   A dd i t ion a lr e c o rd sid e n t i f i e d th rougho th e rs ou r c e s(WW W e b ,h a nds e a r c h ) (n=1 ,766 ) E l ig ib i l i ty S c r e en ing R e c o rd sa f t e rdup l i c a t e sr emov e d (n=4 ,557 ) R e c o rd ss c r e e n e d (n=4 ,557 ) R e c o rd se x c lud e d (n=4 ,2 45) Fu l lt e x ta r t i c l e s a s s e s s e dfo re l ig ib i l i ty (n=312 ) Fu l lt e x ta r t i c l e s e x c lud e d ,w i thr e a s on s (n=282 ) R e s e a r c hs tud i e s in c lud e dinr e v i ew (n=25 ) In c lud ed   Id en t i f i c a t ion L i t e r a tu r eS e a r chD i ag r am G u id e l in e sa ndr e po r t in c lud e dinr e v i ew (n=5 )