SATI SFACTI ON I N DEMENTI A AND STROKE CAREGI VERS: A COMPARATI VE STUDY
Mar gar ida Sot t o May or1 Oscar Ribeir o2 Con st an ça Paú l3
Mayor MS, Ribeir o O, Paúl C. Sat isfact ion in dem ent ia and st r oke car egiv er s: a com parat iv e st udy. Rev Lat ino-am En fer m agem 2 0 0 9 set em br o- ou t u br o; 1 7 ( 5 ) : 6 2 0 - 4 .
I nfor m al car egiv ing t o t he elder ly is associat ed w it h t he pr esence of bot h difficult ies and posit iv e r ew ar ds, but t he lat t er hav e been consider ed less sy st em at ically in ger ont ological lit er at ur e. I n t his cr oss- sect ional st udy , w e com p ar ed sat isf act ion of car eg iv er s of d em en t ed ( n = 7 0 ) an d st r ok e p at ien t s ( n = 4 4 ) b y m ean s of t h e Car er ’s Assessm ent of Sat isfact ion I ndex ( CASI ) and also com par ed t heir depr ession lev els. Findings r ev ealed t h e p r esen ce of sat isf act ion d er iv in g f r om in t r ap er son al d y n am ics ( eld er ly as m ain b en ef iciar y ) an d f r om int er per sonal dy nam ics ( car egiv er as m ain beneficiar y ) in dem ent ia sit uat ions, and t he pr esence of sat isfact ion der iv ing fr om int r aper sonal dy nam ics ( car egiv er as m ain beneficiar y ) in st r ok e sit uat ions. Bot h subgr oups of car egiver s r evealed sim ilar yet significant levels of depr ession. The need for a bet t er under st anding of sat isfact ion ex per iences in dem ent ia and st r ok e car egiv er s is highlight ed.
DESCRI PTORS: per son al sat isf act ion ; car egiv er s; aged; Alzh eim er disease; st r ok e
PERCEPCI ÓN DE LA SATI SFACCI ÓN DE CUI DADORES DE PERSON AS CON DEMEN CI A Y
DE CUI DADORES DE PERSON AS CON AVC
La pr est ación infor m al de cuidados a las per sonas ancianas est á v inculada a la pr esencia de dificult ades y de sat isfacciones. Gener alm ent e la lit er at ur a ger ont ológica enfoca los aspect os de la dificult ad, sin em bar go no le ha dado la m ism a at ención al análisis de la exper iencia de la sat isfacción. El pr opósit o de est e est udio t r ansver sal f u e com p ar ar la ex p er ien cia d e sat isf acción y d e sin t om at olog ía d ep r esiv a d e cu id ad or es d e an cian os con dem encia ( n= 70) y de cuidador es de ancianos con ant ecedent es de, por lo m enos, un AVC ( n= 44) , a t r avés del Í ndice de Evaluación de la Sat isfacción del Cuidador ( CASI ) . Los r esult ados indican la pr esencia de sint om at ología depr esiv a en am bos gr upos; sat isfacción int r aper sonal ( cent r ada en el anciano) y int er per sonal ( cent r ada en el cuidador ) par a los cuidador es de ancianos con dem encia y, sat isfacción int r aper sonal ( cent r ada en el cuidador ) par a los cuidador es de per sonas con ant ecedent es de AVC. Se dest aca la necesidad de com pr ender m ej or las ex per iencias de sat isfacción en los cuidador es de ancianos con dem encia y AVC.
D ES CRI PTO RES : s a t i s f a c c i ó n p e r s o n a l ; c u i d a d o r e s ; a n c i a n o ; e n f e r m e d a d d e A l z h e i m e r ; A c c i d e n t e Cer eb r o v ascu l ar
ESTUDO COMPARATI VO: PERCEPÇÃO DA SATI SFAÇÃO DE CUI DADORES DE PESSOAS
COM DEM ÊN CI A E CUI DADORES DE PESSOAS COM AVC
A pr est ação in f or m al de cu idados a pessoas idosas é v in cu lada à pr esen ça de dif icu ldades e de sat isf ação. Enquant o a lit er at ur a ger ont ológica enfoca os aspect os da dificuldade t am bém t em negligenciado a análise da ex per iência de sat isfação. O pr opósit o dest e est udo t r ansv er sal foi com par ar a ex per iência de sat isfação e de si n t om at ol og i a d ep r essi v a d e cu i d ad or es d e i d osos d em en ci ad os ( n = 7 0 ) e d e cu i d ad or es d e i d osos com ant ecedent es de pelo m enos um AVC ( = 44) , at ravés do Í ndice de Avaliação da Sat isfação do Cuidador ( CASI ) . Os r esu lt ados in dicam a pr esen ça de sint om at ologia depressiva para am bos os grupos, sat isfação int rapessoal (centrada no idoso) e interpessoal (centrada no cuidador) para os cuidadores de dem enciados e satisfação intrapessoal ( cent rada no cuidador) para os cuidadores de pessoas com ant ecedent es de AVC. Dest aca- se a necessidade de com preender m elhor as experiências de sat isfação em cuidadores de idosos com dem ência e AVC.
DESCRI TORES: sat isfação pessoal; cu idador es; idoso; doen ça de Alzh eim er ; aciden t e cer ebr al v ascu lar
1RN, Doct oral St udent in Biom edical Sciences, I nst it ut o de Ciências Biom édicas Abel Salazar, Univer sidade do Por t o, Por t ugal, m em ber, Cent r o Univer sit ár io
Assunção UNI FAI , Por t ugal, e- m ail: m gsot t om ayor @gm ail.com ; 2Psychologist , Ph.D. in Biom edical Sciences, m em ber, Cent r o Univer sit ár io Assunção UNI FAI ,
Por t ugal, e- m ail: oscar- soar es- r ibeir [email protected] ; 3Ph.D. in Ger ont ology, Dir ect or, Cent r o Univer sit ár io Assunção UNI FAI , Por t ugal, Full Pr ofessor, I nst it ut o de
Ciências Biom édicas Abel Salazar, Univer sidade do Por t o, Por t ugal, e- m ail: const ancapaul@net cabo.pt .
BACKGROUND
A
lzh eim er ’s disease an d st r ok e ar e t w o of t h e m ost com m on sou r ces of d isab ilit y in w est er nsociet y t h at lead t o t h e n eed f or f am ily car egiv in g;
t h e f ir st on e, con sid er ed t h e “ cen t u r y ’s d isease”( 1 ), const it ut es a chr onic pr ogr essiv e disor der t hat leads
t o t h e m ost com m on ir r ev er sib le d em en t ia am on g
older per sons( 2); t he second one is an im por t ant cause of d eat h an d f ig u r es am on g t h e lead in g cau ses of
disabilit y around t he w or ld( 3). Bot h condit ions com prise
a w ell- k now n bur den and st r ess for t he car egiv er s( 4-5 )
, b u t f e w r e p o r t s h a v e c o m p a r e d t h o s e t w o
car egiv ing sit uat ions in w hat r egar ds t he pr esence of
p osit iv e r ew ar d s an d g r at if icat ion s, su ch as f eelin g
m or e useful, feeling needed, feeling good about t he
self, finding m eaning in life or lear ning new sk ills.
As t h e com plex it ies an d dy n am ic n at u r e of
ca r e g i v i n g u n d e r sco r e t h e cr i t i ca l i m p o r t a n ce o f
r eflect ing on bot h t he negat ive and t he posit ive aspect s
o f t h e r o l e , a n d co n si d e r i n g t h a t r e l a t i v e l y l i t t l e
at t ent ion has been paid t o sat isfact ion in car egiv ing
research( 6), t he aim of t he pr esent st udy is t o com par e
m easu r es of sat isf act ion an d d ep r ession in eld er ly
c o - r e s i d e n t c a r e g i v e r s o f s t r o k e a n d d e m e n t i a
p a t i e n t s. To d e f i n e “ sa t i sf a ct i o n w i t h ca r i n g ”, w e
con sid er ed a t h eor et ical f r am ew or k( 7 ) t h at in clu d es
t h r ee d if f er en t d im en sion s: ( i) sat isf act ion d er iv in g
fr om in t er per son al dy n am ics bet w een car egiv er an d
ca r e r e ce i v e r ; ( i i ) sa t i sf a ct i o n d e r i v i n g f r o m t h e
i n t r a p e r s o n a l o r i n t r a p s y c h i c o r i e n t a t i o n o f t h e
car egiv er and car e r eceiv er ( int r aper sonal dy nam ics)
and; ( iii) sat isfact ion der iving fr om a desir e t o pr om ot e
a posit iv e or av oid a n egat iv e ou t com e in t h e car e
r ecei v er ( a r esu l t o f so m e a ct i o n ) . We h av e a l so
con sid er ed t h ese au t h or s’ d ist in ct ion b et w een w h o
m a i n l y b e n e f i t s f r o m t h e s a t i s f a c t i o n f e l t - t h e
car egiv er or t he car e r eceiv er( 2 , 7 ).
METHODS
Sa m p l e
The sam ple com pr ises t w o dist inct subgr oups:
70 car egiv er s of pat ient s diagnosed w it h Alzheim er ’s
disease and 44 car egiver s of per sons w ho w er e st r oke
s u r v i v o r s ( e i t h e r f r o m h e m o r r h a g i c o r i s c h e m i c
cer ebr al v ascular accident s) . Dem ent ia pat ient s w er e
r ecr u it ed f r om a pu blic Psy ch oger iat r ic Ser v ice in a
Ps y c h i a t r i c H o s p i t a l a n d t h e i r c a r e g i v e r s w e r e
int er v iew ed at t he hospit al or at t heir hom es. St r ok e
pat ient s w er e r ecr uit ed fr om a r ehabilit at ion ser v ice
at a privat e hospit al and int erview s w ere held at t heir
hom es. The Et hics Com m it t ee of bot h inst it ut ions gave
appr oval for t he st udy.
Table 1 pr esent s t he m ain dem ographic and
b a c k g r o u n d c h a r a c t e r i s t i c s o f e a c h s u b g r o u p o f
car eg iv er s, as w ell as t h e sp ecif ic con t ex t s of car e
deliv er y. Sign ifican t differ en ces w er e fou n d bet w een
t he subgroups in t erm s of gender ( subst ant ially m ore
wom en in dem ent ia sit uat ions) , work st at us ( caregivers
m or e lik ely t o be em ploy ed in st r ok e sit uat ions) and
som e d im en sion s of t h e con t ex t of car e ( r ev ealin g
dem en t ia car egiv er s as t h e su bgr ou p m or e lik ely t o
pr ov ide help on a cont inuous 24h basis, for a longer
period of t im e and wit h no secondary help) .
Tab le 1 – Car eg iv er ch ar act er ist ics an d con t ex t s of
car e by su bgr ou p
e l b a i r a V a i t n e m e D s n o i t a u t i s 0 7 = N e k o r t S s n o i t a u t i s 4 4 = N p s r e v i g e r a C ) % ( n r e d n e G e l a
M 11(15.70) 18(40.90) 0.005
e l a m e
F 59(84.30) 26(59.10)
) D S ( n a e m , e g
A 59,85(14.17) 61,45(10.44)
l e v e L l a n o it a c u d
E 1,n(%)
s r a e y 4
< 15(21.40) 12(27.30) 0.388
s r a e y
4 33(47.10) 15(34.10)
s r a e y 4
> 22(31.40) 17(38.60)
) % ( n , s u t a t S k r o W d e y o l p m
E 22(31.42) 28(63.63) <0.001
d e y o l p m e n u / d e r it e
R 48(68.57) 16(36.36)
) % ( n , r e v i e c e r e r a c h t i w p i h s n o it a l e R e s u o p
S 29(41.42) 10(22.72) 0.062
n e r d li h
C 30(42.85) 18(40.90)
s r e h t
O 11(15.73) 16(36.38)
e r a c f o t x e t n o C ) % ( n , d e d i v o r p p l e h f o y c n e u q e r F m o d l e
S 4(5.80) 17(38.60) <0.001
s e m it e m o
S 10(14.50) 14(31.80)
n e t f
O 15(21.70) 6(13.60)
s y a w l
A 40(58.00) 7(15.90)
) % ( n , g n i v i g e r a c n o t n e p s e m i T t c a t n o c r a l u g e r r
I 22(31.42) 7(15.90) 0.019
y a d -fl a
H 19(27.14) 23(52.27)
y a d / s r u o h 4
2 29(41.42) 14(31.81)
) % ( n , g n i v i g e r a c f o n o it a r u D s h t n o m 6
< 5(7.14) 17(38.63) <0.001
s h t n o m 2 1 < s h t n o m
6 7(10.00) 19(43.18)
s h t n o m 2 1
> 58(82.85) 8(18.18)
) % ( n , s r e v i g e r a c y r a d n o c e S t n e t s i x e n
I 19(27.14) 0(0.00) <0.001
p l e h l a n o i s s e f o r
P 20(28.57) 24(54.54)
y li m a
F 31(44.28) 20(45.45)
d i a c it s e m o D o
N 58(82.90) 21(47.72) <0.001
s e
Y 12(17.10) 23(52.27)
I n b o t h s u b g r o u p s , c a r e r e c e i v e r s w e r e
m o st l y f em al e ( 5 8 . 6 % i n d em en t i a si t u at i o n s an d
6 6 % in st r ok e sit u at ion s) an d v er y old ( m ean ag e
of 7 8 . 8 7 , SD= 6 . 9 in d em en t ia sit u at ion s an d 7 6 . 0 4 ,
SD = 9 . 4 7 i n st r o k e si t u at i o n s) . D ep en d en cy l ev el s
w e r e s i g n i f i c a n t l y h i g h e r i n t h e d e m e n t e d c a r e
r e c e i v e r s .
Dat a Collect ion an d I n st r u m en t s
Af t er in f or m ed con sen t t o p ar t icip at e in t h e
s t u d y w a s o b t a i n e d f r o m t h e c a r e g i v e r s ,
con f id en t ialit y w as p r om ised an d v olu n t ar ies w er e
assu r ed , sev er al in st r u m en t s w er e u sed t o assess
d i f f e r e n t a s p e c t s o f t h e c a r e g i v e r ’ s e x p e r i e n c e .
I n f o r m a t i o n c o m p r i s i n g d e m o g r a p h i c a n d
b a c k g r o u n d / c o n t e x t u a l v a r i a b l e s w e r e o b t a i n e d
t h r o u g h a b r i e f i n f o r m a t i v e q u e s t i o n n a i r e . Th e
car eg iv er ’s sen se of sat isf act ion w as ex am in ed b y
t h e Ca r e r ’ s A s s e s s m e n t o f S a t i s f a c t i o n I n d e x
( CASI )( 8), an inst r um ent t hat evaluat es t he car egiver ’s su bj ect iv e ex per ien ce of sat isf act ion an d t h e ex t en t
of sat isf act ion t h at is associat ed t o each of t h ese
fact or s. I t involves 30 differ ent it em s associat ed w it h
t h e p e r so n b e i n g ca r e d f o r ( 1 0 i t e m s) , w i t h t h e
ca r e g i v e r ( 1 2 i t e m s) , o r r e l a t e d t o i n t e r p e r so n a l
dy nam ics ( 8 it em s) ; w hen com plet ing t he scale, t he
su b j ect s ar e ask ed t o i n d i cat e w h et h er each i t em
ap p l i es p r o v i d i n g a g r eat d eal o f sat i sf act i o n ( 4 ) ,
applies an d pr ov ides qu it e a lot of sat isf act ion ( 3 ) ,
applies but does not pr ov ide a sour ce of sat isfact ion
( 2 ) , o r d o e s n o t a p p l y t o t h e m ( 1 ) . Ca r e g i v e r ’ s
d e p r e s s i o n w a s m e a s u r e d u s i n g t h e Po r t u g u e s e
v e r si o n o f t h e Ce n t r e f o r Ep i d e m i o l o g i c St u d i e s
Dep r ession Scale ( CES- D)( 9 ), ad op t in g scor es of 2 0 o r h i g h e r t o i n d i c a t e d e p r e s s i o n f o r d e s c r i p t i v e
p u r p o s e s . Fi n a l l y, t h e p a t i e n t ’ s d i s a b i l i t y a n d
d ep en d en cy w er e assessed b y Law t o n ’s- I n d ex o f
I nst r um ent al Act iv it ies of Daily Liv ing( 10).
Dat a An aly sis
St a t i st i ca l a n a l y si s w a s ca r r i e d o u t u si n g
S PS S f o r w i n d o w s , v e r s i o n 1 4 . 0 . Co m p a r i s o n s
bet w een gr oups w er e per for m ed using Mann- Whit ney
a n d Kr u sk a l - Wa l l i s t e st s, a s w e l l a s Sp e a r m a n ’ s
coef f icien t s, Ch i- sq u ar e an aly sis an d Fish er ’s ex act
t est for 2 gr oups. Package r –par t of R Pr ogr am , ver sion
2 . 4 . 1 w as u sed f or d ecision t r ee an aly sis. Lev el of
significance w as set at .05.
RESULTS
As w e can see in Table 2 , sat isf act ion w it h
car egiving w as found in bot h subgr oups of car egiver s,
w it h som e sign if ican t dif f er en ces w it h r egar d t o it s
sou r ce ( dy n am ics) an d t o t h e per ceiv ed ben ef iciar y
of car e: in int r aper sonal dy nam ics, st r ok e car egiv er s
pr esent ed higher sat isfact ion w hen t he car egiv er w as
t h e m a i n b en ef i ci a r y o f ca r e ( 2 0 . 3 ; SD = 4 . 2 ) a n d
d em en t i a car eg i v er s p r esen t ed h i g h er sat i sf act i o n
levels w hen t he care receiver w as t he m ain beneficiary
( 6 . 9 , SD= 1 . 3 ) ; in int er per sonal dy nam ics, w hen t he
c a r e g i v e r w a s c o n s i d e r e d t h e m a i n b e n e f i c i a r y,
dem ent ia car egiver s r evealed higher sat isfact ion ( 7.7,
SD= 2.5) t han st r oke car egiver s ( 7.0, SD= 2.4) . When
u si n g t h e CASI su b sca l e s a s o u t co m e s i n a n o n
-con d it ion al log ist ic r eg r ession m od el, t h e ad j u st ed
od d s r at ios sh ow ed sig n if ican t d if f er en ces b et w een
t he gr oups, m ainly ev idencing pr incipally t hat st r ok e
car egiv er s ar e m or e lik ely t o der iv e sat isfact ion fr om
int r aper sonal dynam ics w it h t he car egiver as t he m ain
beneficiar y of car e t han dem ent ia car egiver s ( OR 0.7,
95% CI 0. 6- 0. 9) .
Table 2 - Car egiv er ’s Sat isfact ion: Dem ent ia v s. St r oke
¹ Model calculat ed t hr ough non condit ional logist ic r egr ession and adj ust ed for all CASI dim ensions * < 0.05; * * < 0.01
s e l a c s -b u s I S A C a i t n e m e
D Stroke Adjustedodds o i t a r ) D S ( n a e
M Mean(SD) (95%CI)1
y r a i c if e n e b n i a m s a r e v i g e r a c -s c i m a n y d l a n o s r e p r e t n i m o r f d e v i r e d n o it c a f s it a
S 7.7(2.5)* 7.0(2.4) 1.4(1.0-1.8)*
y r a i c if e n e b n i a m s a r o f d e r a c n o s r e p -s c i m a n y d l a n o s r e p r e t n i m o r f g n i v i r e d n o it c a f s it a
S 10.4(1.6) 10.5(1.3) 0.9(0.6-1.4)
t if e n e b l a u t u m -s c i m a n y d l a n o s r e p r e t n i m o r f g n i v i r e d n o it c a f s it a
S 7.9(2.7) 8.1(2.3) 0.8(0.6-1.2)
y r a i c if e n e b n i a m s a r e v i g e r a c -s c i m a n y d l a n o s r e p a r t n i m o r f g n i v i r e d n o it c a f s it a
S 17.2(6.2) 20.3(4.2)** 0.7(0.6-0.9)**
y r a i c if e n e b n i a m s a r o f d e r a c n o s r e p -s c i m a n y d l a n o s r e p a r t n i m o r f g n i v i r e d n o it c a f s it a
S 6.9(1.3)* 6.5(1.2) 1.5(1.0-2.3)*
t if e n e b l a u t u m -s c i m a n y d l a n o s r e p a r t n i m o r f g n i v i r e d n o it c a f s it a
S 14.7(3.6) 15.3(3.5) 1.0(0.8-1.2)
y r a i c if e n e b n i a m s a r e v i g e r a c -s c i m a n y d e m o c t u o m o r f g n i v i r e d n o it c a f s it a
S 4.4(2.0) 5.1(1.7) 0.9(0.6-1.2)
y r a i c if e n e b n i a m s a r o f d e r a c n o s r e p -s c i m a n y d e m o c t u o m o r f g n i v i r e d n o it c a f s it a
As t o t h e p r esen ce o f d ep r essi o n , t h o u g h
global scores of CES- D revealed t o be ver y sim ilar in
bot h subgr oups ( indicat ing t he pr esence of sym pt om s
at clin ical lev el) , w h en con sid er in g t h e f ou r - f act or
st ruct ure of t he scale( 11), several significant differences
w er e f ou n d in “ d ep r essiv e af f ect ”, “ p osit iv e af f ect ”
and “ int er per sonal fact or s” ( see Table 3) . When using
CES- D fact ors as out com es in a non- condit ional logist ic
r e g r e s s i o n m o d e l , t h e a d j u s t e d o d d s r a t i o s
dem onst r at ed t hat t he “ posit iv e affect ” fact or ( w hich
includes feeling hopeful about t he fut ure, feeling happy
o r en j o y i n g l i f e) si g n i f i ca n t l y d i st i n g u i sh es st r o k e
car egiv er s f r om dem en t ia car egiv er s ( OR 1 . 3 , 9 5 %
CI 1 . 0 - 1 . 7 ) an d t h at “ in t er per son al” fact or s ( feelin g
t hat t he ot her dislik es m e or sees m e as unfr iendly )
dist inguishes t he subgroups in a m or e significant w ay,
w i t h st r o k e ca r e g i v e r s p r e se n t i n g m o r e o f t h e se
depr essiv e sy m pt om s ( OR 0. 3, 95% CI 0. 1- 0. 4) .
Ta b l e 3 - Ca r e g i v e r ’ s D e p r e s s i v e Sy m p t o m s :
Dem en t ia v s. St r ok e
¹ Model calculat ed t hr ough non condit ional logist ic r egr ession and adj ust ed for all CES- D fact or s
* < 0.05; * * < 0.01; * * * < 0.001
I n gen er al, w h en con sider in g t h e r esu lt s of
CASI an d CES- D, t h e m ain differ en ces bet w een t h e
subgroups can be synthesized as follows ( see Table 4) :
Table 4 - Car egiver s of st r oke pat ient s and dem ent ed
pat ient s: m ain dist inct iv e feat ur es
s t n e i t a p e k o r t s f o s r e v i g e r a
C Caregiversofdementedpatients
+
m o r f d e v i r e d n o it c a f s it a S
-s c i m a n y d l a n o s r e p r e t n i
y r a i c if e n e b n i a m s a r e v i g e r a c
) I S A C (
+
m o r f g n i v i r e d n o it c a f s it a S
-s c i m a n y d l a n o s r e p a r t n i
y r a i c if e n e b n i a m s a r e v i g e r a c
) I S A C (
+
m o r f d e v i r e d n o it c a f s it a S
-s c i m a n y d l a n o s r e p a r t n i
n i a m s a r o f d e r a c n o s r e p
) I S A C ( y r a i c if e n e b
+ Depressivesymptoms -) D -S E C ( r o t c a f l a n o s r e p r e t n i
+ Depressivesymptoms -) D -S E C ( r o t c a f t c e f f a e v it i s o p
DI SCUSSI ON AND CONCLUSI ON
Car ing for anot her per son can be exper ienced
a s st r essf u l a n d b u r d en i n g b u t i t ca n a l so b e a n
im por t ant sour ce of posit ive r ew ar ds. One m ain finding
of t his st udy w as t hat a high pr opor t ion of car egiver s
ex pr essed sat isfact ion, ir r espect iv e of t he dist inct ion
m ad e b et w een t h e car eg iv er an d t h e p er son car ed
f o r a s t h e p e r c e i v e d b e n e f i c i a r y o f c a r e , a n d
i r r e sp e ct i v e o f t h e p r i v i l e g e d d y n a m i c so u r ce o f
sat i sf act i o n ( ei t h er i n t r ap er so n al , i n t er p er so n al o r
ou t com es) . An ot h er r elev an t f in d in g w as t h at b ot h
subgr oups r epor t ed t hat sat isfact ion is co- exist ent w it h
d ep r essiv e sy m p t om s, w h ich w er e f ou n d at a v er y
sim ilar lev el in bot h sit uat ions.
How ev er, w hen look ing at t he subgr oups w e
h a v e c o n s i d e r e d , t w o m a j o r d i f f e r e n c e s w e r e
i d e n t i f i e d : t h e f i r s t i s t h a t , a l t h o u g h t h e y b o t h
present ed sources of sat isfact ion, suggest ing alt ruist ic
co n cer n w i t h t h e w el f a r e o f t h e p er so n ca r ed f o r
( in t r aper son al dy n am ics) , dem en t ia car egiv er s m or e
lik ely int er pr et ed t heir sat isfact ion in t he light of t he
car e- r eceiv er ’s w ell b ein g , w h ile st r ok e car eg iv er s
r o o t e d t h e i r so u r ce o f sa t i sf a ct i o n m o st l y i n t h e
accom plishm ent of t heir ow n effort s, such as fulfilling
a sense of dut y or show ing per sonal sk ills ( car egiv er
as m ain beneficiar y of car e) ; secondly, w e concluded
t hat dem ent ia car egiv er s w er e m or e lik ely t o der iv e
sat isf act ion f r om in t er per son al dy n am ics, especially
fr om receiving appr eciat ion for t heir effor t s ( car egiver
as t he m ain beneficiar y ) . A pot ent ial ex planat ion for
t h ese r esu lt s m ay r ely on t h e f act t h at sp ecialized
se r v i ce s f o r Al zh e i m e r ’ s d i se a se p a t i e n t s a r e n o t
w id ely av ailab le in Por t u g al( 1 2 ), w h ich r est r ict s t h e
availabilit y of service opt ions and t heir qualit y. I n t his
cont ex t , t he car egiv er ’s effor t s t o m aint ain t he car e
r e c e i v e r ’ s d i g n i t y a n d k e e p h i m / h e r o u t o f a n
inst it ut ion can be highlight ed as an im por t ant sour ce
of sat isf act ion , alon g w it h t h e social r ecog n it ion of
t h e c a r e g i v e r ’ s i n v a l u a b l e a s s o c i a t e d e f f o r t s .
Fu r t h er m or e, in con t r ast w it h car egiv er s of pat ien t s
w it h st r oke, w ho abr upt ly have t o cope w it h a sit uat ion
of d ep en d en cy t h ey ar e n ot p r ep ar ed f or an d m ay
highlight t he dev elopm ent of new sk ills and abilit ies
w h en iden t if y in g sou r ces of sat isf act ion in t h e r ole,
d e m e n t i a ca r e g i v e r s m a y b e l e ss a w a r e o f su ch
ef f o r t s, a t t r i b u t i n g g r ea t er v a l u e t o i n t er p er so n a l
dy nam ics. Som e of t hese r esult s hav e been par t ially
p r e s e n t e d i n r e c e n t s t u d i e s o n o l d e r m a l e
car egiv er s( 13) but need fur t her inv est igat ion.
s r o t c a f D -S E
C Dementia Stroke AdjustedOR )
D S ( n a e
M Mean(SD) 95%CI1
t c e f f A e v i s s e r p e
D 8.8(4.8)* 7.5(2.3) 1.1(0.9-1.2) t
c e f f A e v it i s o
P 5.2(2.7)* 4.3(1.7) 1.3(1.0-1.7)* d
e d r a t e r d n a c it a m o S
y t i v it c
a 7.0(4.2) 6.5(2.2) 1.1(0.9-1.3) l
a n o s r e p r e t n
I 0.8(1.3) 2.5(1.3)*** 0.3(0.1-0.4)*** e
r o c s l a t o
D esp i t e t h e l i m i t at i o n s o f t h i s st u d y ( e. g .
sam ple size and several differences in t he const it ut ion
of t he subgr oups) , w e t hink t hat it pr ovides significant
im plicat ions for nur ses and ot her healt h pr ofessionals
w it h r eg ar d t o t h e in cr eased at t en t ion n eed ed f or
sat isfact ion in car egiv ing. This ar t icle not es t hat t he
experience of sat isfact ion w it h care can m inim ize and
put t he negat ive experiences associat ed w it h car e int o
anot her per spect iv e. “ I t is im por t ant t o consider t he
fam ily bot h as a unit of car e and a unit t o be t ak en
care of”( 14). I n a field w here t here is grow ing ev id en ce
t h a t s a t i s f a c t i o n s a r e a s s o c i a t e d w i t h i m p r o v e d
c a r e g i v e r w e l l - b e i n g , w e b e l i e v e t h a t
u n d e r st a n d i n g t h e sa t i sf a ct i o n o f ca r i n g i s m o r e
t h an o f t h eo r et i cal i n t er est , an d sh o u l d t h er ef o r e
b e i n cl u d e d i n t h e a sse ssm e n t o f t h e ca r e g i v e r ’ s
g l o b a l c i r c u m s t a n c e s . Th e w a y t h e r o l e a n d i t s
act iv it ies ar e p er ceiv ed in t er m s of sat isf act ion can
en r ich t h e car eg iv er ’s ex p er ien ce ( w it h in it s sev er al
d y n am ics) an d can b e a u sef u l t ool f or p r of ession al
i n t e r v e n t i o n s . H e a l t h p r o f e s s i o n a l s h a v e t o
an t icip at e t h e n eed s of car eg iv er s an d f or esee t h e
d e v e l o p m e n t o f p e r so n a l si t u a t i o n s( 1 5 ). Th e CASI
i n s t r u m e n t h a s b e e n i n c r e a s i n g l y u s e d i n
car eg iv in g st u d ies, p r ov id in g im p or t an t r ef lect ion s
f or in t er v en t ion( 1 6 - 1 7 ), b u t it is st ill m ost ly u sed in
d em en t i a si t u at i o n s. We st r o n g l y ad v o cat e t h at i t
s h o u l d b e m o r e u s e d i n s a m p l e s o f s t r o k e
ca r e g i v e r s, a s i t ca n p r o v i d e i m p o r t a n t d a t a a n d
t o o l s f o r n u r si n g p r o f essi o n a l s i n t h ei r w o r k w i t h
t h e f a m i l y ’ s p a r t i c i p a t i o n i n t h e c a r e r e c e i v e r ’ s
r eh a b i l i t a t i o n p r o ce ss.
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