This article was downloaded by: [Umeå University Library]On: 23 November 2014, At: 21:45Publisher: RoutledgeInforma Ltd Registered in England and Wales RegisteredNumber: 1072954 Registered office: Mortimer House, 37-41Mortimer Street, London W1T 3JH, UK

Death StudiesPublication details, includinginstructions for authors andsubscription information:http://www.tandfonline.com/loi/udst20

CAREGIVERS OFPERSONS WITHALZHEIMER'SDISEASE: SOMENEGLECTEDIMPLICATIONS OFTHE EXPERIENCE OFPERSONAL LOSS ANDGRIEFCYNTHIA LOOS ALAN BOWDPublished online: 29 Oct 2010.

To cite this article: CYNTHIA LOOS ALAN BOWD (1997) CAREGIVERSOF PERSONS WITH ALZHEIMER'S DISEASE: SOME NEGLECTEDIMPLICATIONS OF THE EXPERIENCE OF PERSONAL LOSS AND GRIEF,Death Studies, 21:5, 501-514, DOI: 10.1080/074811897201840

To link to this article: http://dx.doi.org/10.1080/074811897201840

PLEASE SCROLL DOWN FOR ARTICLE

Taylor & Francis makes every effort to ensure the accuracyof all the information (the “Content”) contained in thepublications on our platform. However, Taylor & Francis,

our agents, and our licensors make no representations orwarranties whatsoever as to the accuracy, completeness,or suitability for any purpose of the Content. Any opinionsand views expressed in this publication are the opinions andviews of the authors, and are not the views of or endorsedby Taylor & Francis. The accuracy of the Content should notbe relied upon and should be independently verified withprimary sources of information. Taylor and Francis shall not beliable for any losses, actions, claims, proceedings, demands,costs, expenses, damages, and other liabilities whatsoever orhowsoever caused arising directly or indirectly in connectionwith, in relation to or arising out of the use of the Content.

This article may be used for research, teaching, and privatestudy purposes. Any substantial or systematic reproduction,redistribution, reselling, loan, sub-licensing, systematicsupply, or distribution in any form to anyone is expresslyforbidden. Terms & Conditions of access and use can be foundat http://www.tandfonline.com/page/terms-and-conditions

Dow

nloa

ded

by [

Um

eå U

nive

rsity

Lib

rary

] at

21:

45 2

3 N

ovem

ber

2014

¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥CAREGIVERS OF PERSONS WITH ALZHEIMER’S DISEASE:

SOME NEGLECTED IMPLICATIONS OF THE EXPERIENCE OF PERSONAL LOSS AND GRIEF

¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥

CYNTHIA LOOS

Schoo l o f Nursin g, Lakeh ead Un ive rsity, Thun de r Bay, On tar io , Can ad a

ALAN BOWD

Facu lty o f Education , Lak eh ead Un ive rsity, Th un der Bay, On tar io , Can ada

T h is a r ti c l e q u e s t io n s so m e tr a d i tio n a l c o n c e p tu a li za tio n s o f c a r e g i v e r s o f p e rs o n s

w i th A lz h e im er ’ s d i se a s e a n d r e la t ed d em e n tia s (A D ). T h e p h en o m e n o lo g y o f c a r e-

g i v in g in r u r a l a n d i s o la t e d r e g i o n s o f n o r th e r n C a n a d a is e x a m in e d w i t h in a

f r a m e w o r k d e v e lo p e d f r o m th e c o n s t r u c t s o f p e r s o n a l l o s s a n d g r i e f . S ix t y - e i g h t

c a r e g i v e r s f o r p e r s o n s w i t h A D s h a r e d t h e i r t h o u g h t s a n d f e e l in g s a b o u t p e r -

s o n a l l o s s e s p e rc e iv e d t o h a v e o c cu r r ed in t h e i r l iv e s w i th t h e a d v e n t o f t h e c a re -

g iv in g ro l e . F o u r t h e m e s w er e i d e n t i ® e d s u g g e s ti n g a r o l e p er c e i v ed b y ca r eg iv e r s

a s o n e i n w h i c h t h e y b e c o m e s u b s u m e d t o t h e n e e d s o f t h e p e r s o n i n c a r e .

D im in u t io n o f s e l f i n t h e c a r e g i v e r r o le h a s b e e n n eg l ec te d in th e li te r a tu r e .

Stu d ie s co n ce rn in g th e m u ltiface ted con sequ en ce s o f care g ivin gfo r a p e rson with Alzh e im er ’ s d ise ase and re lated d em en tias ( AD)are n u m e rou s. Mo s t fo cu s o n th e b u rd e n o f car e g ivin g an d th eso c ial su p po r t n e e d s to p rom o te care g ive rs’ p h ysical, em o tio n al,an d so cial we ll-be in g ( Hin r ich sen & Niede reh e , 1994; Will iam son

Fu nd in g fo r th is stu d y was p ro vid e d by Gran t 498 -89 -1002 f ro m th e So cial Sc ie n ce san d Hum an itie s Re se arch Cou n cil o f Can ada.

We th an k th e Alzh e im e r’ s Soc ie ty o f Thund e r Bay fo r th e ir assist an ce wi th th e stud y.Al so , we th an k th e two an on ym ou s reviewer s fo r th e ir com men ts.

Add re ss co r re spo n den ce to Cyn th ia Lo o s, Sch o o l o f Nu rs in g , Lakeh e ad Un ive rsi ty,955 Ol ive r Road , Thund er Bay, On tario , Can ada P7B 5E1.

Death Studies, 21: 501± 514, 1997Copyright q 1997 Taylor & Francis

0748-1187/97 $12.00 ` .00

501

Dow

nloa

ded

by [

Um

eå U

nive

rsity

Lib

rary

] at

21:

45 2

3 N

ovem

ber

2014

& Sch u lz, 1993 ) . H owe ve r, a cco rd in g to D i l l e h ay an d San d ys( 1990) , th is focu s h as d e layed th e d eve lo pm en t o f a m ore accu rateu n d e rstan d in g o f th e lived exp e r ien ce o f care g ivin g . Talk in g to n -Bo ye r an d Sn yd e r ( 1994) ag re e . Th ey b e lie ve th at th e im p re cisecon cep t de ® n ition s and n ar row p e rspe ctive s o f som e stu d ie s fail toad d re ss wh at Go ttle ib ( 1990) te rm s th e ª m u ltid im en sion al n atu reo f th e supp ort co n str uctº ( p . 36) . Sim ilarly, Will iam son and Schu lz( 1993) em ph asize th at th e stre ss asso ciate d with careg iving fo r p er-so n s with AD is com p le x . Stu d ie s th at con sid e r care g ivin g fo r pe r-so n s with AD as a sin g le co n stru c t fa il to ackn owled ge th is . Th eyp ropo se th at cop in g strate g ie s to m ed iate sp e ci ® c stre sso rs in trin -s ic to th e ro le var y acco rd in g to th e p ar ticu lar care giver s itu atio n .

Sistle r ( 1989) , fo r e xam p le , e xam in ed th e u se fu ln e ss o f co p in gstrate g ie s ( social sup po r t and p ro blem so lvin g ) fo r care give rs an dfo und th em to be un re lated to care g iver we ll -be in g . Con sequen tly,sh e co n c lu d e d th at so lu t io n s to re d u c e care g ive r b u rd e n m u s tre la te to th e m u l tid im e n sio n al ch aracte r o f th e care g ive r ’ s ro le .Howeve r, Will iam son an d Sch u lz ( 1993) cau tio n th at som e situ a-t io n s are d i f f icu l t to m e d iate an d th at , f r e qu e n t ly, th e se are th eon e s care g ive rs repo r t are m o st stre ssfu l.

Co n sisten t with Sist le r ’ s vie w, an ex am in atio n o f th e p sych o -lo g ic a l co s t s o f care g ivin g c on c lu d e d th a t a l th o u g h care g ive rsad ap te d to th e situ atio n , th e n egative p sych o lo g ical con sequ en ce swe re n eve r wh o lly e lim in ated ( Parks & Pil isu k , 1991) . Th e in ve sti-g a to r s co n c lu d e d th a t th e p sych o lo g ica l e f fe c t s o f ca re g ivin gp e rsist ª d e sp ite d ive rsitie s in p erso nal m ode s o f cop in g and [ th e ]p e rso nal re so u rce sº th at m ay be bro ugh t to bear on th e situ atio n( p . 507) .

Re ce n t in ve s t ig at io n s in to ca re g ive r be r e avem e n t h aveattem p ted to co n str u ct a bro ad er co n cep tualization o f th e u n iqu elived expe rien ce o f carin g fo r a p e rso n with AD. Pre vio u sly, stud ie sh ad fo cu se d o n b e re avem e n t re su l tin g from th e d eath o f a p ar-e n t o r ch i ld , m as s d e ath , d ivo rce , an d se p ara tio n an x ie ty( Bo go lu b, 1991; Johan sen , 1988; Vachon & Stylian o s, 1988; We iss ,1975) . Oth e rs h ad exam in ed stud en ts’ be re avem en t ad ap tatio n tod is r u p t io n o f be l ie f s ab o u t th e m e an in g o f l i f e an d th e wo r ld( Schwartzbe rg & Jan o f f -Bu lm an , 1991; Vick io , 1990) .

In an im portan t stu dy o f g rie f in care give r sp ou se s, Wasow an dCoon s ( 1987) wro te th at ª o u r cu ltu re u sually d o e s n o t re co gn ize

502 C . L o o s a n d A . B o w d

Dow

nloa

ded

by [

Um

eå U

nive

rsity

Lib

rary

] at

21:

45 2

3 N

ovem

ber

2014

th at th e care g ive rs are g r ie vin g . . . d u r in g th e lo n g , d e vastatin gil ln e ssº ( p . 21) . They argued th at th e burden o f care givin g and th esu b se qu en t d eath o f th e p e rso n in care , com b in ed with so c ie ty’ slack o f u n d e rs tan d in g f o r th is u n iq u e e xp e r ie n ce , wo u ld n e g a-tive ly af fe ct th e care g ive r’ s ph ysical and em o tio n al we ll -b e in g .

W ith th e g ro wth o f in ve s t ig at io n s c h al le n g in g acce p te dan te ce d e n ts an d o u tco m e s o f g r ie f , re se arc h e r s h ave b e c om ein cr e as in g ly aware o f g r ie f ’ s co m p le x n atu re ( Mu l lan , 1992 ) .In ve st ig at in g th e im pac t o f b e re avem e n t o n c are g ive r s, Mu l land e te rm in e d th a t g r ie vin g co m m en c e d co n s id e rab ly b e fo re th ed eath o f th e p e rso n in care , m ain ly th ro u g h lo ss asso c iated withh is o r h e r c o g n it ive d e te r io r at io n . Mu l lan h yp o th e s ize d th atb e cau se th e re are ve r y d ive rse re sp on se s to b e re avem en t, m an yo f wh ich are n o t ye t fu lly u n d e rstoo d , th e e xp e rien ce o f lo ss m ayac tu a l ly, in so m e case s , h ave a p o s i t ive e f f e c t o n b e re avem e n tad ap tation .

Negative p sych o lo g ical co n se que n ce s o f care g ivin g , h oweve r,o f te n pe rsist fo llowin g be re avem en t. A lon g itu d in al stud y o f care -g ive r d e p re ssio n af te r be re avem en t f o u n d th at ad ve rse p h ysica lan d em o tio n al e f fe cts o f care g ivin g laste d we ll be yon d th e d eatho f th e pe rso n in care ( Bodn ar & Kie co lt-Glase r, 1994) .

Th e n o t io n th at care g ive rs m ay be ab le to p rep are fo r d eath( an tic ipato r y g r ie f ) as a re su lt o f ove rwhe lm in g bu rd en o f carin gfo r a p e rso n with AD h as re ce ived som e atten tio n . Th e len g th o ft im e in vo lved in care g ivin g an d stre sse s asso ciated with th e ro lem ay cu r tail p re p aratio n fo r d ealin g with th e death o f th e pe rso n incare . Th is, in tu rn , m ay re su lt in a m o re d if f icu lt g r ie vin g p e r io d( Bass & Bowman , 1990) .

H u bbard ( 1994 ) e x am in e d th e e xp e r ie n ce o f sp o u sa l care -g ive r s f o r p e r so n s with AD in th e p e r io d le ad in g u p to th e in d i-vid u al ’ s d e ath . Sh e dem on strate d th at g r ie f o ccu rred du r in g th em id d le an d f in a l s tag e s o f AD. In ad d it io n , sh e f o u n d th ata lth o u g h care g ive rs an tic ip ated th e re l ie f th at wou ld o ccu r withd eath , th e y d id n o t p re p are fo r th e d e ath o f th e p e rso n in care .Walk e r ( 1995) in ve stig ated th e im pact o f an tic ip ato r y g r ie f e xp e-r ie n ce d b y care g ive rs . Sh e fo u n d th at b o th len g th o f care g ivin gan d p atien t sym ptom s we re re late d to th e se ve r ity o f gr ie f .

Mu llan ( 1992) be lie ved th at th e len g th o f tim e sp en t in care -g ivin g an d th e requ ired clo se in te rac tio n be tween care g ive r an d

P er s o n a l L o s s a n d G r ie f 503

Dow

nloa

ded

by [

Um

eå U

nive

rsity

Lib

rary

] at

21:

45 2

3 N

ovem

ber

2014

th e p e rso n in care h e lp ed p rep are th e care g ive r fo r th e de ath o fth e p e rso n in care . H oweve r, Mu l lan ar gu ed th at th is i s n o t syn -o n ymou s with an tic ipato r y g r ie f . Ind ividu al care g ive r e xp er ien ce san d re sp o n se s to b e re avem e n t are co m p le x an d var ie d , an daccep tin g th e e ven tu al d eath o f th e pe rso n with AD an d th e com -p le tio n o f th e care g ivin g ro le is bu t o n e face t o f gr ie f.

Nu m e rou s s tu d ie s h ave lin k e d b e r e avem e n t to th e p h ys ica lan d m en ta l d e te r io r at io n o f th e p e rso n in care an d th e b u rd e no f care g ivin g ( Kram e r, 1993; Matso n , 1994; Talk in g to n -Bo ye r &Snyde r, 1994) . Fo r e xam p le , Sh abad ( 1989) n o ted th at lo ss h ad fo rto o lo n g be en in te rp re te d as an exp e r ien ce re late d to th e p h ysi-ca l se p aratio n o f o n e in d ivid u al f rom an o th e r. H e be lie ve d th atwhen lo ss is d e ® n ed so le ly o n a ph ysical leve l, th e le g itim acy o f th eª p h en om eno lo gy o f th e lo ss e xpe rien ce º is ign o red ( p . 104) . H iscon ten tio n was th at o n e can p erce ive an d exp e rien ce p sych ic lo ss ,d e sp ite th e p hysical p resen ce o f th e p e rson , an d th at d ealin g withp sych ic lo ss i s m o re d i f f icu l t th an ad ap t in g to p h ys ic a l lo s s . Inad d it io n , Sh ab ad b e l ie ved th at p sych ic lo ss h as f ar m o re e lu sivecon sequen ce s. The lack o f ® n ality an d th e in com p le te n ess o f p sy-ch ic lo ss m ay h am pe r th e in d ivid u al ’ s ad ap tatio n to th e g r ie vin gp ro ce ss.

Alth ou gh re cen t re se arch con ce rn in g g rie f ad ap tatio n o f care -g ive r s f o r p e rso n s with AD h as ad van ce d th e d e ve lo p m en t o f am ore com p le te m od e l fo r care g ivin g , it h as also d rawn atte n tio n too th e r issu e s. For in stan ce , th e im p act o f lo sse s associated with th ecareg ive r ro le th at are sp e ci® c to th e care g ive r as an in d ivid ual h asn o t b e e n e x am in e d . Al th ou g h th e se lo s se s are se c o n d ar y,We e n o l se n ( 1988 ) co n te n d s th at th e y are l ik e ly to be m o rep ain fu l . Con s iste n t with th is , Bo dn ar an d Kie co lt -Glase r ( 1994)p ro p o se th at wh e n th e care g ive r ’ s ro le i s e n d e d , th e m an y p e r -so n al sac r i f ic e s in cu r re d with car e f o r th e p e r so n with AD m ayn e gative ly a f fe ct th e care g ive r’ s ab il i ty to co p e . Fo r e xam p le , th ec u r ta i lm e n t o f s ig n i f ican t so c ia l an d r e c re atio n al ac t ivitie s m aym ean th at th e y are no t easily re sum ed . It h as also be en fo u nd th atd im in ish ed social n e tworks co r re late with symp tom s o f d ep re ssio nin care g ive rs afte r th e death o f th e p e rso n in care ( Geo rge , Blaze r,Hugh e s, & Fowler, 1989) .

Th e fo cu s o f m o s t in ve stig atio n s te n d s to be l im ite d to car e -g ive r s in u rban en viro nm en ts wh e re th e ap p rop r iate in f ras tr u c-

504 C . L o o s a n d A . B o w d

Dow

nloa

ded

by [

Um

eå U

nive

rsity

Lib

rary

] at

21:

45 2

3 N

ovem

ber

2014

tu re e x ist s o r m ay e as i ly be p u t in p lace ( L awto n , B ro d y, &Sap e rste in , 1989; Mu llan , 1992 ; Pr ice & Levy, 1990 ; Talk in g to n -Boye r & Sn yde r, 1994) . Litt le atten tio n h as be en paid to care g ive rsre sid in g in iso lated re g io n s whe re so cial sup p or t and se r vice s arem o st l ik e ly to be in accessib le o r un available ( Bowd & Loo s, 1996) .What is th e care g ivin g e xp e rien ce fo r th e se care g ive rs? Wh at pe r-so nal lo sse s do th ey e xpe r ien ce ? How do th ey co pe ?

Th e p h e nom en on cen tral to th is p hase o f an ex ten sive stu d ywas th e n atu re o f th e p e rso nal lo sse s th at care g ive rs d e scribe d asb e in g p ar t o f th e care g ive r e xp e r ie n ce . Th e re se arch e rs be l ie veth at lo ss as a l ived exp e r ien ce is a u n iqu e ly p e rson al e xp e rie n ce .The re lin qu ishm en t an d e ven tu al se ver in g o f em o tio nal an d so ciala ttachm en ts are , fo r e ach care g ive r, in ten se ly p e rso n al an d in d i-vid u al in th e ir e f f e c t . Each car e g ive r e xp e r ie n c in g th e se lo s se sd o e s so in an un paralle le d m ann e r.

A car e g ive r ’ s l ive d e xp e r ie n ce i s f u r th e r in f lu e n ce d b y th eim pact o f a varie ty o f in te rn al an d exte rn al facto rs. The se pe rson allo s se s be c om e p ar t o f e ach car e g ive r ’ s l ive d e xp e r ie n ce . Wh ileth e se lo sse s m igh t p o ssib ly en h an ce th e care g ive r ’ s l ived exp e r i-e n ce , Kal i sh ( 1987 ) h as p ro p o se d th at ª g r ie f i s th e af f e c t ivere spon se to lo ss o r d ep r ivatio n . Wh ate ve r le ad s to im portan t lo ssm ay le ad to fe e l in g s o f g r ie f º ( p . 33) . We h ave th e re fo re d e f in edlo ss as an y aspe ct o f th e careg ive r ’ s pe rso nal l ife p e rce ived to h avebeen fo r fe ite d be cau se o f th e d em and s o f th e care g ive r ro le .

Method

P a r t ic ip a n t s

An ex ten sive se arch in vo lvin g lo cal an d re gio nal h ealth and so cialse r vice p ro fe ssio n als , com m un ity agen cie s, an d a varie ty o f m ed iae n su red th at th e sam p le o f care g ive rs re p re se n ted th e re g io n o fn o r thwe s te rn On tar io . N in e ty care g ive rs we re id e n t i f ie d an dag re ed to par tic ip ate ; 68 o f th e se in d ividu als we re ab le to re tu rnth e su r vey ( 77% re sp on se rate ) . Th e m e an age o f care g ive rs was64 years ( ran ge : 40 ± 80) , with 60% fall in g be tween 55 and 75 yearso f ag e . Th e re g io n ’ s are a is ap p ro x im ate ly 700 ,000 km 2 bu t su p -p o r ts a p opu latio n o f le ss th an 250,000 . Twen ty-f ive p ar tic ip an tswe re f ro m vi l lag e s an d sm al le r to wn s ( p o p u lat io n s o f le s s th an

P er s o n a l L o s s a n d G r ie f 505

Dow

nloa

ded

by [

Um

eå U

nive

rsity

Lib

rary

] at

21:

45 2

3 N

ovem

ber

2014

5 ,000 ) , wh i le th e rem ain d e r we re f ro m th e re g io n a l ce n te r( po pu latio n : 125,000) .

P r o c ed u r e

A sin gle su r vey fo rm was develo ped by th e in ve stigato rs. Ten o bje c-t ive an d L ik e r t-t yp e i tem s ad d re ssed d em o graph ic s f o r th e p e r-so n in care an d th e care g ive r. N in e o bje ctive item s and two o pen -e nd ed item s sou gh t in fo rm atio n con ce rn in g re lation sh ip to carere c ip ien t, le n g th o f tim e sin ce d iagn o sis , le n g th o f tim e sp e n t inth e care g ive r ro le , an d typ e an d u se o f su p p o r t se r vice s. In ad d i-tion , a 77-item care g ivin g d ynam ics scale asse ssed pe rce ived n e ed s,m o rale , an d co p in g st rate g ie s. An o p e n -e n d e d item ask e d car e -g ive r s to ª d e sc r ib e th e th in g s yo u fe e l yo u h ave g ive n u p d u e totak in g o n th e care g ive r ro le .º

Results

D e m o g r a p h i c In fo r m a t io n

Fif ty-s ix pe rcen t o f re spond en ts we re sp ou sal care g ive rs; 21% we readu lt ch ild ren , and 19% were an o th e r re lative o r f rien d . Se ven typ e rcen t rep o r te d sp end in g be tween 75% and 100% o f th e ir tim ecareg ivin g , with th e pe rio d o f care rang in g from le ss th an 1 year to20 years ( M = 5 years) . A d iagno sis o f AD had be en m ade fo r 81%o f th e pe rso n s in care , with 52% d iagn o sed in th e p re vio u s 3 yearsand 93% with in th e p re viou s 10-ye ar p e rio d . The m ajo rity ( 79% )o f h ou seho ld s d ep ended on p en sion in com e an d so cial in su ran ce ,with 35% rep o r tin g to tal in com e s o f le ss th an $20,000; o n ly 16%o f re sp o n d e n ts ( a l l o f wh o m we re ad u l t ch i ld re n ) r e p o r te din com e s o f m o re th an $50 ,000. As e xp e c ted , g iven th e age , g en -d e r, an d re sid en ce o f m any o f th e re spond en ts, 38% repo r te d h av-in g re ce ived e lem en tar y ed u catio n o n ly. Th e p e rso n s in care h adre sid e d in th e ir p re se n t h om e f rom 1 to 86 ye ars ( M = 37 ye ars ,S D = 27) .

Six ty p e rcen t o f th e care g ive rs rep o r ted th at ass i stan ce fromfam ily m em be r s wa s th e m o s t h e lp fu l su p p o r t r e ce ive d . O th e rin d ivid u als an d ag e n c ie s p e r ce ive d to be o f d ire c t su p p o r t we reh o m em ak e r se r vic e s ( c i te d by 59% ) , p h ysic ian s ( 57% ) , f r ie n d s

506 C . L o o s a n d A . B o w d

Dow

nloa

ded

by [

Um

eå U

nive

rsity

Lib

rary

] at

21:

45 2

3 N

ovem

ber

2014

( 43% ) , th e Alzh em ie r ’ s So c ie ty ( 32% ) , p u b lic h e alth n u rse s an dcare g ive r su p p o rt g ro u p s ( e ach 22% ) , an d o th e r so cial agen c ie s( 15% ) .

In re sp on se to th e o pen -e nd ed in vitation ªDe scribe th e th in g syo u f e e l you h ave g iven u p d u e to tak in g o n th e care g ive r ro le ,º19% state d th e y h ad n o t g iven u p an yth in g to tak e o n th e care -g ive r ro le . Oth e r re sp on d en ts attach ed com m en ts, wro te le t te r s,o r e n c lo se d p o e m s to b e t te r e xp re s s th e ir fe e l in g s ab o u t th isa sp e c t o f th e ca re g ivin g ro le . Th is ar t ic le ad d re s se s th e sere sp on se s.

A l l re sp o n se s we re re c o rd e d an d system at ica l ly g ro u p e dacco rd in g to com m o n se ts . Fo r in stan ce , act ivitie s co n sid e red tob e so c ia l o r re c re at io n a l we re ass ig n e d to th is th em e . No t a l lre sp on d en ts e xp re sse d lo sse s in m o re th an on e o r two d if fe re n ta re as . Wh e n th e d e sc r ip t ive e xp re s s io n s o f a l l re sp on se s we r eas sig n e d to g ro u p s , f o u r co m m o n th em e s em e rge d : ( a ) Lo ss o fso c ia l an d re c r e atio n al in te r ac t io n , ( b ) lo ss o f co n tro l o ve r l i f ee ven ts, ( c ) lo ss o f we ll-be in g , an d ( d ) lo ss o f occup atio n .

T h em e s

L o s s o f S o c ia l a n d R ec r ea t i o n a l I n t e ra c ti o n . Th is th em e was repeatedby th e m ajo rity o f care g ivers. In in stan ce s in wh ich par tic ipatio n insocial and recre ation al activitie s h ad been an im portan t part o f th ecare g ive r’ s li fe p rio r to o r in th e e arly stage s o f tak in g o n th e ro le ,th e se act ivitie s h ad ceased o r h ad b e e n large ly cu r ta il e d . As o n espou sal care g ive r re late d , ª I h ave no social li fe ou ts id e th e h om e atall . . . al l m y re cre atio n al activitie s are gon e . . . . Ju st to h ave som e-on e to talk to th at wou ld u nd e rstan d . . . wou ld be a g re at h e lp tom e .º A p re vio u sly active sp ou se o b se r ved , ª I h ave h ad to g ive u pm o s t o f m y re c r e at io n , so c ia l , an d vo lu n te e r wo rk .º An o th e rsp ou se com m en ted : ªYou r social l ife is cu t sh o r t, f rie n d s an d fam -i ly are f e w . . . yo u f e e l i so la te d .º Lo s in g fr ie n d s was a co m m o ncom m en t, and , as o n e sp ou se stated , ª It lasts so lon g you r fr ien d sstop callin g .º

Wh ile sp ou sa l care g ive rs e xp re ssed re g re t at th e ir with d rawalf ro m so cial an d re c re at io n al activitie s , a lm o st a ll state d th at th isch o ice was n e ce ssar y to facil itate co p in g . Fo r th e ad u lt ch ild care -g ive r s , th e p e rce ive d lo s s o f so c ia l an d r e c re atio n al in te rac tio n

P er s o n a l L o s s a n d G r ie f 507

Dow

nloa

ded

by [

Um

eå U

nive

rsity

Lib

rary

] at

21:

45 2

3 N

ovem

ber

2014

was e xp re sse d in te rm s o f f r u stratio n an d b i tte r n e ss. On e ad u l tch i ld h ad re tu rn e d 2 years p re vio u sly to th e sm al l vi l lag e o f h isb ir th . H e d id so in o rd e r to care fo r h is p are n ts, bo th o f wh o mh ad d em en t ia , an d h e wro te t h a t h e h ad b e e n ª f o rc e d to . . .m o ve away f ro m [m y] accu stom e d su r ro un d in g s .º As a re su lt o fh is lo n g ab se n ce f ro m th e vi l la g e , h e h ad lo s t c o n tac t with an yn e two rk o f f rien d s h e h ad p re viou sly kn own . H is p aren ts h ad o u t-l ive d th e ir n e two rk o f f r ie n d sh ip s , wh ic h fu r t h e r ac ce n tu a te dh is p e r ce i ve d iso la t io n . Th e vi l la g e was to o sm al l to b e ab le top ro vid e re sp i te o r su p p o r t se r vic e s , an d h e wro te th a t ª th e r ese em ed to be ve r y litt le ad vice asid e from th e com m on fo lk [ com -m en t in g th at] `it ’ s yo u r d u ty to care fo r you r p are n ts n o m atte rh ow h ard it g e ts .’ º

An o th e r ad u l t ch i ld care g ive r with a 10 -m on th -o ld ch i lde xp re sse d f e e l in g s o f f r u st ratio n an d h e lp le ssn e s s: ª I t h as b e enve r y d if ® cu lt to en te rtain fr ien d s an d p lan d in n e r p artie s. Firstly Ih ave n o tim e to p repare , and se con d ly it is awkward fo r o u r friend sto re lax o r h ave fu n in h e r [ m o th e r-in -l aw’ s] p re se n c e .º Th ere sp on d en t fu r th e r re lated th at ªwe n e ed a babysitte r fo r o u r 10-m o n th -o ld wh e n we g o o u t. A te e n ag e r wi l l n o t b ab ys i t wh e n a`d em e n te d ’ p e r so n is in th e h om e as we l l . Th e d i f f icu l tie s ar ee n coun te red wh en m y h u sban d an d I wan t to tak e a h o lid ay withou r ch ild . . . . We h ave no t fo un d an yone to stay with h e r . . . I ̄ ewo u t to m y fam ily’ s Ch r istm as re u n io n th is ye ar an d m y h u sb an dstayed beh in d .º

L o s s o f C o n t r o l O v e r L i f e E v e n t s . Bo th sp ou se an d ad u lt ch ild care -g ive r s e xp re ssed u n re so lved an ge r, f r u stratio n , an d d e je c tio n atth e ir lo s s o f co n tro l o ve r l i f e e ve n ts . On e ad u l t ch i ld s ta te d : ª Ive r y m u ch re sen t th e fact th at I n o lo n ge r co n tro l m y life . My se lfan d fam ily com e se con d . I wan t m y no rm al li fe again .º

On e spou se com m en ted : ª You g ive up you r fre ed om to com ean d g o as yo u p le ase .º An o th e r re sp o n d e d : ª I g ave u p m y f re e -d om an d p r ivacy fo r an y o f m y own p u rsu i ts . In th e e n d I co u ldh ard ly le ave h e r sigh t.º Sti l l ano th e r to ld u s th at ª I am con stan tlycon ® n ed to h om e .º Even care g ive rs wh o d id h ave acce ss to som efo rm o f in -h om e re sp ite se r vice com m en ted th at ª you h ad to stayon a tim e sch edu le .º As on e wro te , ª [ You ] cann o t do th in g s whenyou wan t to bu t o n ly at ar ranged tim e s.º

508 C . L o o s a n d A . B o w d

Dow

nloa

ded

by [

Um

eå U

nive

rsity

Lib

rary

] at

21:

45 2

3 N

ovem

ber

2014

Wh ile th e m ajo r i ty o f care g ive rs e xp re ssed a lo n g in g fo r th ef re e d o m to be th e ir o wn p e rso n , f ew wou ld re l in qu ish th e care -g ivin g ro le . As o n e care g ive r p u t it, ªTh e d ay-to -d ay care g ivin g isto le rab le .º Mo re th an two th ird s o f th e in fo rm an ts rep o rted be in gre sig n e d to th e care g ivin g ro le . Th ey we re n o t, h owe ve r, re con -c i le d to th e lo s s o f co n tro l o ve r p e r so n al an d f am ily l i f e th ataccom pan ied th is ro le .

Sp ou se s who h ad fo un d it n e ce ssar y to re lin qu ish th e fu ll-tim ecare g ivin g ro le d id n o t n e ce ssar ily g a in con tr o l o ve r l i fe e ve n ts.Many spou se s we re sti l l sp en d in g m u ch o f th e ir day assistin g withcare at re sid en tial facil itie s . On e sp ou se wro te th at sh e d ro ve 100m ile s daily to assist in carin g fo r h e r h u sban d .

Adu lt ch ild care g ive rs also rem ark ed on th e ir co n tinu in g lacko f co n tro l o f th e ir daily l ife fo llowin g in stitu tio n alizatio n o f th e irp are n ts with AD. On e d au gh te r sta ted : ª I fe e l f r u strated at tim e s[ g o in g to care fo r h e r ] be cau se I f e e l I am n o t d o in g e n o u gh .ºAn o th e r re p o r te d th at s in ce h e r f ath e r was in an ex te n d e d caref ac i l i ty, sh e e xp e r ie n ce d le s s co n tro l o ve r h e r p e r so n al l i f e .Pre vio u sly sh e h ad sup p orted h e r p aren ts in th e ir h om e , bu t nowa l l h e r n o n wo rk in g t im e was d ivid e d be twe e n su p p o rt in g h e rm o th e r o n a daily basis in th e hom e an d visitin g h e r fath e r in th ere sid en t ial faci l ity. Sh e con c lu d ed , ª My wh o le p e rso n al l ife is o nh o ld .º

L o s s o f W e l l -B e in g . Livin g with th e lo ss o f ph ysical well-be in g cre ate sd if ® cu ltie s fo r m an y e lde r ly pe rso n s. Sle ep an d re st patte rn s, u su -a l ly a f f e c te d b y ag e , are f u r th e r d is r u p te d fo r o ld e r sp o u se s b yth e care give r ro le . Mo st o f th e spou sal care g ive rs rep o rted e xh au s-tio n cau sed by lack o f s le ep an d an in abil ity to ® n d p e rson al tim e .Mak in g u se o f available re so u rce s d id litt le to p ro vid e re sp ite . Aso n e care g ive r p u t i t , ª Day c are was a h e lp [ b u t] I was to oe xh au s ted to g o o u t an ywh e re .º In ad d itio n , a lo ss o f em o t io n alwe l l-b e in g was e xp re s se d in te rm s o f re stl e ssn e ss, d i f f icu lty co n -cen tratin g , and be com in g u p se t e asily.

Th e p re d om in an t em o t io n exp re ssed b y al l care g ive rs waswo rr y. The ir con ce rn abou t th e p re sen t an d fu tu re af fe cted th e irwe l l-b e in g . As o n e care g ive r wro te , ª I f in d I l ive a l ife o f co n stan two rr y and stre ss.º Ano th er re sponded : ª I worr y th at if I be com e ill ,o r h ave to go to [ the ] ho sp ital, what wou ld happen to m y hu sband?º

P er s o n a l L o s s a n d G r ie f 509

Dow

nloa

ded

by [

Um

eå U

nive

rsity

Lib

rary

] at

21:

45 2

3 N

ovem

ber

2014

Sti ll ano th er spou sal careg ive r com m en ted , ª I am growin g o ld andcou ld u se m ore supp ort from th e ch ild ren . The ir an swe r is to `pu th er in a hom e .’ I be lieve th at if I pu t h er in a hom e sh e wou ld lo seall to uch with re ality. I canno t cond em n h e r to a li fe like th at.º

Fe e lin g s o f gu i lt cre ate d em o tio n al co n f l ic t f o r m an y sp ou seand ad u lt ch ild care g ive rs. As o n e care g ive r stated : ª It ’ s com fo r t-in g to kn ow som ebody care s enou gh to ask how I p e rso nally fe e l.I f e e l te r r ib ly g u i lty fo r th in k in g th is , b u t som e tim e s I h o p e h e rc on d itio n wi l l d e te r io ra te e n o u g h so th at sh e h as to be in s t itu -tio n alized . That is th e o n ly way sh e will e ve r le ave h om e .º

Re lin qu ish in g a loved on e to in stitu tio n al care u su ally af fec te dth e care g ive r ’ s em o t io n al we l l -b e in g . As o n e sp o u se re la te d :ª Pu ttin g h im in th e [ in stitu tion ] , e ven th ou gh th e care is go od , isl ik e p u ttin g h im in jail . It h aun ts you .º Th e dau gh te r o f o n e care-g ive r repo r te d th at ªm y m o th e r fe e ls a failu re be cau se sh e can n olo nge r care fo r m y d ad .º An o th e r care g ive r sum m ed up th e situa-tio n su ccin ctly: ª It is n o t e asy to d e tach you rse lf in o rd e r to h ave ah app ie r an d m ore em otion ally h ealth y life .º

L o s s o f O c c u p a t i o n . Man y care g ive rs h ad be e n o b lig ed to g ive u pth e ir em p lo ymen t be cau se as o n e re spond en t wro te , ª I co u ld n o ttak e o n an y wo rk away f rom h om e .º An o th e r sta ted : ª I h ave h adto g ive u p m y job to p rovide care .º One ad u lt ch ild wro te : ª [ Be in ga care g ive r] i s th at m u ch h ard e r wh en you are fo rced to g ive u pyou r wo rk .º An o th e r sta te d : ª I wo rk e d p ar t tim e b u t i t was ve r yd if ® cu lt.º For som e , wo rk h ad p rovided a so u rce o f so cial co n tactan d p h ys ica l an d m en ta l ac tivity an d h ad h e lp e d o f f se t so m e o fth e ir lo n e lin e ss. As o n e care g ive r n o ted : ª I h ad a h om e b u sin e ssth at was a sou rce o f social co n tacts and activity, bu t I h ad to g ive itu p .º Fre q u e n t c o m m en ts ab o u t re su m in g em p lo ym en t in th efu tu re in d icate th at m any ad u lt ch ild care g ive rs be lie ved o ccup a-t io n al lo ss to be tem po rar y. On e d au g h te r wro te : ª I wo u ld e n jo yte ach in g ag ain , b u t th e re are n o re g r e t s ab o u t c ar in g fo r Mo mnow sin ce th is was a de cis io n I m ad e years ago .º

Discussion and Conclusions

The care g ive rs wh o p artic ip ated in th is stu d y h ave con ® rm edth at th e care g ive r’ s ro le in vo lve s a u n ique exp e rien ce o f p e rson al

510 C . L o o s a n d A . B o w d

Dow

nloa

ded

by [

Um

eå U

nive

rsity

Lib

rary

] at

21:

45 2

3 N

ovem

ber

2014

lo ss . The ir re spon se s valid ate Powe ll ’ s ( 1989) o b se r vatio n th at ª ap e rso n ’ s g re ate st lo ss an d u ltim ate tran sitio n i s th e lo ss o f h is o rh e r se lf wh en p laced in a situ atio n . . . in wh ich th e se lf is d isco n -® rm ed º ( p . 565) . Th e se lf can be re gain ed on ly by care give rs sep -aratin g th em se lve s from th e care give r ro le an d acknowled gin g th es ig n i f ican ce o f th e ir p e rso n a l lo sse s ( Har ve y, O rbu ch , Web e r,Merbach , & Alt, 1992) .

Give n th e f ragm en tat io n o f so c ia l su p p o r t se r vice s avai lab let o m an y o f o u r ca r e g ive rs , r e p o r te d p e r so n a l l o s se s we r eaccep ted as n e ce s sar y co p in g m e ch an ism s. Wh e n lack o f fam ilysu p p o rt al so e x ist s , care g ive rs view th e ir with d rawal f ro m ac t ivi-t ie s as t h e o n l y way to co p e . Be in g a c a r e g ive r i s ª c o p in g wit hm a in ly n e g a t i ve c h o i ce s wh e r e in a l l p o s s ib le a l t e r n at ive s a r eu n d e sirab le º ( Wilso n , 1989, p . 94 ) . Al th ou gh care g ive rs e xp re ssn eg ative f e e l in g s abo u t th e n ar rowin g o f th e ir so c ia l an d re c re -a t io n al a c t ivi t i e s , L yn ch -Sau e r ( 19 90 ) b e l ie ve s th at th e y o f te np re fe r th is to th e ten sio n o f k e e p in g u p with act ivitie s , e sp e c ia llyth o se th at in vo lve tak in g th e p e rso n with AD ou tsid e th e p r ivacyo f th e h om e .

Th e l ive d e xp e r ie n c e o f lo ss d e sc r ib e d b y th e c are g ive rs ino u r stu d y i s co n siste n t with o th e r accoun ts in th e li te ratu re . Fo rin stan ce , m o st sp o u sa l care g ive rs e xp re s sed th e ir lo ss o f co n tro lo ve r l i fe e ven ts in te rm s o f re s ign atio n an d d u ty. Vick io ( 1990)b e l ie ve s th a t d e f in in g wh at c an n o t b e c h an g e d wi l l e n ab le th ecareg ive r to tak e con tro l o f wh at can be ch an ged . Adu lt ch ild care-g ive r s, h oweve r, we re m ore lik e ly to e xp re ss an ge r and b itte rn e sstoward th e p re ssu re to g ive up th e ir social an d re cre atio n al activi-tie s. Wh ile th is wou ld p e rh ap s be e xp e cte d behavio r, Dille h ay an dSan dys ( 1990) an d Olive r an d Bo ck ( 1985) su gge st th at an ge r m ayb e r e g ard e d as m alad ap t ive in th is c o n te x t . Th e y su g g e st th atin te r n al iz in g a l te r n a tive em o t io n s m ay le ad to m o re fu l f i l l in gbeh avio r lik e ly to re so lve th at an ge r.

As num e rou s care g ive rs in o u r stu d y in d icated , gu ilt is d e ep -e n e d an d em o t io n al we l l -b e in g i s at r i sk wh e n fu l l -t im e care i stran sfe r red to an in stitu tio n . Exp re ssion s o f gu ilt are p e rh ap s ª th em o st d eb il i tatin g em o tio n s p lagu in g care g ive rsº ( O live r & Bo ck ,1985, p . 28) . They advo cate th at care g ive rs acknowled ge th e gu iltan d accep t th e ir l im itatio n s to fac il itate th e ir ab il ity to d eal withth e d em an ds o f th e care g ive r ro le .

P er s o n a l L o s s a n d G r ie f 511

Dow

nloa

ded

by [

Um

eå U

nive

rsity

Lib

rary

] at

21:

45 2

3 N

ovem

ber

2014

The care g ive rs in th e p re sen t study acknowledged th at, de sp iteth e ir pe rso nal lo sse s, th e y wou ld choo se to co n tin ue th e care g ive rro le . The re fo re , as Sim o s ( 1979) h is em phasized , it is im po rtan t tore cogn ize th e n e ed fo r care g ive rs to ª fee l th e y h ave som e con tro lo ve r th e ir l ive s to com pen sate fo r th e catastrop h ic lo ss o f con tro lº( p . 248 ) th at th e y e xp e r ien ce . It wou ld se em reaso n ab le to in fe rth at d e cisio n s co n ce rn in g se r vice s fo r care g ive rs sh ou ld be m utu -ally d e te rm in ed by bo th care g ive rs and re le van t agen cie s.

Fle x ib le p rog ram s to sup p ort care g ive rs in th e ir pe rso nal d eci-s ion s to g ive care are n eed ed . Howeve r, p ro gram s su ited to u rbane n viro nm en ts m ay n o t be f e as ib le in i so la te d c om m un it ie s .Con sid e rat io n m ig h t b e g ive n to o rg an izin g vo lu n te e rs to h e lpp ro vid e su p po rt in assistin g careg ive rs livin g in ru ral and iso latedse ttin gs.

Fu r th er research is n eeded fo cu sin g on th e lived expe rien ce o fth e c are g ive r. Wh i le th e p re se n t s tu d y co n c e rn e d th e co m p le xn atu re o f g r ie f asso ciated with care g ivin g fo r p e rso n s with AD inr u ra l an d iso la te d re g io n s, co n tin u in g in ve st ig atio n m ay atten dto o th e r cu ltu ral and d em ograph ic variab le s th at de ® n e th e e co l-o gy o f care g ivin g . Su ch re se arch wil l ass ist in th e d eve lo pm en t o fs t rate g ie s to em po we r car e g ive rs to m ak e ch an g e s in th e ir p e r -so nal situation s an d am e lio rate th e ir e xpe r ien ce s o f p e rson al lo ss .In par ticu lar, it m ay h e lp to leg itim ize th e g rie vin g p ro ce ss asso ci-a ted with th e p e rso n al lo sse s care g ive rs e xp e rien ce in th e ir l ive s.

References

Bass, D. M., & Bowm an , K. ( 1990) . Th e tran sit ion from care g ivin g to be re ave -m en t : Th e re l a ti o n sh ip o f care -re l a te d stra in an d ad ju stm e n t to d e ath .G e r o n t o lo g i s t, 3 0 , 35 ± 42 .

Bodnar, J. C., & Kieco lt-Glase r, J. K. ( 1994) . Caregive r d ep re ssio n af te r be re ave -m en t : Ch ro n ic str e ss i sn ’ t o ve r wh en it ’ s o ve r. P s y c h o l o g y a n d A g in g , 9 ,372 ± 380.

Bogo lu b , E. B. ( 1991 ) . Wom en an d m id -life d ivorce . Som e p ractice issu e s. S o c ia l

W o rk , 3 0 , 428± 433.Bowd , A., & Loo s, C. ( 1996, May/ Ju n e) . Needs, m orale and cop in g strate g ie s o f

care g ive rs fo r p e rson s with Alzh e im e r’ s d ise ase in iso lated com mun itie s inCan ad a. A m er i ca n Jo u r n a l o f A lz h e im e r ’ s D is e a s e , p p . 1 ± 8 .

Dille hay, R., & Sandys, M. ( 1990 ) . Caregivers fo r Alzhe im e r’ s p atie n ts: Wh at arewe le ar n in g f rom re se arch ? I n t e r n a t i o n a l J o u r n a l o f A g in g a n d H u m a n

D e v e lo p m e n t, 3 0 , 263 ± 285 .

512 C . L o o s a n d A . B o w d

Dow

nloa

ded

by [

Um

eå U

nive

rsity

Lib

rary

] at

21:

45 2

3 N

ovem

ber

2014

George, L. K., B laze r, D. G., Hugh e s, D. C., & Fowle r, N. ( 1989 ) . So cial su ppo rtan d th e o u tc om e o f m ajo r d e p re s sio n . B r i t i s h J o u r n a l o f P s y c h ia t r y , 1 5 4 ,478 ± 485.

Go tt le ib , B . ( 1990) . So cial su p po r t an d fam ily car e in th e e ld e r ly. In B . Bau e r( Ed .) , I n v i t a t i o n a l C o n f e r e n c e o n F a m i l y C a r e g i v in g R e s e a rc h ( p p . 31 ± 43 ) .To ron to : Un ive rsity o f Toron to Pre ss.

Har vey, J., Orbu ch , T., Webe r, A., Me rbach , N., & Alt , R. ( 1992) . Ho u se o f p ainan d h op e: Accoun ts o f lo ss . D e a th S tu d ie s , 99 ± 124.

H in r ich sen , G. A., & Nie d e reh e , G. ( 1994) . Dem en t ia m an agem en t strate g ie san d ad ju s tm e n t o f f am il y m em be r s o f o ld e r p at ien ts. G e r o n t o l o g i s t , 3 4 ,

95± 102 .Hu bbard , J. ( 1994 ) . Th e p re -d eath g rie f e xp e r ie n ce fo r sp o u sa l care g ive r s o f

d em en tia patien ts . D is s e r ta t io n A b s t ra c ts In t e r n a t io n a l, 5 5 , 1706.Joh an sen , B . B . ( 1988) . Paren ta l g rie f o ve r th e d eath o f a ch ild . L o s s , G r ie f , a n d

C a r e , 2 , 143 ± 153.Kal ish , R. ( 1987) . Olde r p eop le an d g rie f . G en e r a ti o n s , 1 1 ( 3) , 33± 38 .Kram e r, B . J. ( 1993 ) . Expan ding th e con cep tual ization o f care g iver cop ing . Th e

im po r tan ce o f re lat ion sh ip -fo cu sed co p in g strate g ie s. F a m i l y R e la t i o n s , 4 2 ,383 ± 391.

Lawton , M., Brod y, E., & Sap e rste in , A. ( 1989) . A con tro l le d stu d y o f re sp ite se r-vice s fo r care g ive rs o f Alzh eim e r’ s p atien ts. G e r o n to lo g is t , 2 9 , 8 ± 16 .

Lyn ch -Sau er, J. ( 1990) . Wh en a fam ily m ember has Alzhe im e r’ s Disease : A ph e -n om en ological de scrip tion o f careg iving . T h e Jo u r n a l o f G e r o n to lo g i ca l N u r s in g ,1 6 ( 9) , 8 ± 11.

Matson , N. ( 1994 ) . Coping , car ing and stre ss : A stu d y o f stro k e care rs and care rso f o ld e r co n fu sed p eo p le . B r i t i s h J o u r n a l o f C l in i c a l P s y c h o lo g y, 3 3 , 333 ± 344.

Mu llan , J. T. ( 1992) . Th e be re aved car eg ive r: A p ro sp e ctive stu d y o f change s inwe l l-be in g. G e r o n to lo g is t , 3 2 , 673 ± 683.

Olive r, R., & Bock , F. ( 1985) . Alle viatin g th e d istress o f careg ive rs o f Alzhe im e r’ sd ise ase p atien ts . A ration al -emo tive th e rap y m ode l. C l in i c a l G e r o n t o lo g i s t , 3

( 4) , 17± 34.Park s, S., & Pilisu k , M. ( 1991 ) . Careg ive r burd en : Gen der an d th e p sycho logical

co sts o f care g ivin g. A m er i ca n Jo u r n a l o f O r th o p s y c h ia tr y , 6 1 , 501 ± 509 .Powell , W. ( 1989) . The ª tie s th at b in d º : Re lation sh ips an d l if e tran sition s. S o c ia l

C a s e w o rk , 6 9 , 556± 562.Pr ice , H . J., & Levy, K. A. ( 1990 , Jan uar y/Febru ar y) . Variab le s in f lu en cin g bu r -

d e n in sp o u sa l an d adu l t ch i ld p r im ar y c are g ive r s o f p e r so n s wi thAlzhe im e r’ s d ise ase in th e hom e se ttin g . A m er i c a n Jo u r n a l o f A lzh e im e r ’s C a r e

a n d R ela te d D i s o r d e rs a n d R e s ea rc h , p p . 34 ± 41 .Schwar tzbe rg , S., & Jan o f f -Bu lm an , R. ( 1991) . Grie f an d th e se ar ch fo r m ean -

in g : Exp lo rin g th e assump tive wo rld s o f be re aved co l le g e stu d en ts . Jo u r n a l

o f S o c ia l a n d C l in i ca l P s y c h o lo g y, 1 0 , 270± 288.Shabad , P. C. ( 1989 ) . Vicissitud e s of psych ic lo ss o f a physical ly p re sen t paren t. In

D. R. Die trich & P. C. Sh ab ad ( Ed s.) , T h e p r o b l e m o f l o s s a n d m o u r n in g ( p p .101 ± 126) . Mad ison , WI: In te rn atio n al Un ive rsitie s Pre ss.

P er s o n a l L o s s a n d G r ie f 513

Dow

nloa

ded

by [

Um

eå U

nive

rsity

Lib

rary

] at

21:

45 2

3 N

ovem

ber

2014

Sim o s, B . G. ( 1979) . A t i m e t o g r i e v e . N ew Yo rk : Fam i ly Se r vic e Asso c iat io n o fAmerica.

Sist le r, A. ( 1989) . Adap tive co p in g o f o ld e r car e g ivin g sp ou se s. S o c ia l W o r k , 3 4 ,415 ± 420.

Talk in gton -Boye r, S., & Sn yde r, D. ( 1994 ) . Asse ssin g im pact on fam ily care g ive rsto Alzh eim e r’ s d ise ase p atie n ts . A m e r ic a n Jo u r n a l o f F a m il y T h er a p y, 2 2 , 57± 66 .

Vach on , M. L ., & Styl ian o s, S. K. ( 1988) . Th e ro le o f so c ial su ppo rt in be re ave -m en t. J o u r n a l o f S o c ia l I s s u es , 4 4 , 175± 190 .

Vick io , C. ( 1990 ) . The good-bye bro ch u re : He lp in g stud en ts cop e with tran sitionan d lo ss. J o u r n a l o f C o u n s e l in g a n d D e v e lo p m e n t , 6 8 , 575 ± 577 .

Walk e r, R. ( 1995) . Th e im p ac t o f an t ic ip ato r y g r ie f o n care g ive r s o f p at ie n tswith Alzh eim e r’ s d ise ase . D is s er ta ti o n A b s tr a c t s I n t er n a ti o n a l , 5 5 , 3315 .

Wasow, M., & Co o n s, D. ( 1987) . Wid ows an d widowe rs o f Al zh e im e r’ s vic t im s.Th e ir su r vival a f te r sp ou se d eath . Jo u r n a l o f I n d e p e n d e n t S o c i a l W o r k , 2 ( 2 ) ,21± 32.

Ween olsen , P. ( 1988) . T r a n sc en d e n c e o f lo s s o v er th e life sp a n . New York : Hem isph ere .We iss, R. ( 1975) . M a r it a l s e p a r a ti o n . New York : Bas ic Book s.W il l i am so n , G. M., & Sch u l tz, R. ( 1993) . Co p in g wi th sp e c i f ic stre s so r s in

Alzh e im e r’ s d isease careg iving . G e r o n to lo g is t , 3 3 , 745 ± 755.Wilson , H . ( 1989) . Fam ily car e g ivin g fo r a re lat ive with Alzh e im e r’ s d em en tia :

Cop in g with negative ch o ices. N u rs in g R e se a rch , 3 8 , 94 ± 98 .

514 C . L o o s a n d A . B o w d

Dow

nloa

ded

by [

Um

eå U

nive

rsity

Lib

rary

] at

21:

45 2

3 N

ovem

ber

2014