Full Te ms & Condi ions o access and use can be ound a
h ps://www. and online.com/ac ion/jou nalIn o ma ion?jou nalCode=camh20
Aging & Men al Heal h
ISSN: (P in ) (Online) Jou nal homepage: www. and online.com/jou nals/camh20
Bu den and quali y o li e o amily ca egi e s
o Alzheime ’s disease pa ien s: he ole o
o gi eness as a coping s a egy
Isabela Mon ei o, Lau a B i o & M. G aça Pe ei a
To ci e his a icle: Isabela Mon ei o, Lau a B i o & M. G aça Pe ei a (29 Feb 2024): Bu den and
quali y o li e o amily ca egi e s o Alzheime ’s disease pa ien s: he ole o o gi eness as a
coping s a egy, Aging & Men al Heal h, DOI: 10.1080/13607863.2024.2320138
To link o his a icle: h ps://doi.o g/10.1080/13607863.2024.2320138
© 2024 The Au ho (s). Published by In o ma
UK Limi ed, ading as Taylo & F ancis
G oup
Published online: 29 Feb 2024.
Submi you a icle o his jou nal
View ela ed a icles
View C ossma k da a
Aging & Men Al HeAl H
Bu den and quali y o li e o amily ca egi e s o Alzheime ’s disease pa ien s:
he ole o o gi eness as a coping s a egy
Isabela Mon ei o , Lau a B i o and M. G aça Pe ei a
Resea ch Cen e in Psychology (CiPsi), School o Psychology, Uni e si y o Minho, B aga, Po ugal
ABSTRACT
Objec i es: This s udy aimed o e alua e he a iables ha  we e associa ed, con ibu ed and
mode a ed quali y o li e (QoL) and bu den in amily ca egi e s.
Me hods:A o al o 130 pa icipan s we e e alua ed using he ollowing ins umen s: Dep ession,
Anxie y and Dis ess Scale; Index o Family Rela ions; Hea land Fo gi eness Scale; Bu den In e iew
Scale; Sho Fo m Heal h Su ey.
Resul s:Being a younge ca egi e , less dis ess, be e amily ela ionships and g ea e use o o -
gi eness we e associa ed wi h mo e QoL. Also, amily ca egi e s who chose he ca egi ing ole, less
dis ess, be e amily ela ionships and g ea e use o o gi eness showed lowe le els o bu den.
Age, dis ess and o gi eness con ibu ed o QoL. In u n, he choice o become a amily ca egi e ,
dis ess, and o gi eness con ibu ed o bu den. Fo gi eness played a mode a ing ole in he ela ion-
ship be ween amily ela ionships and bu den.
Conclusion:Based on he esul s, he e is a need o in e ene in olde amily ca egi e s, pa icula ly
hose who did no choose o become a ca egi e , who epo g ea e dis ess, ha e wo se amily
ela ionships, and display less use o o gi eness, in o de o dec ease hei bu den and p omo e QoL.
In oduc ion
Abou 50 million people wo ldwide a e belie ed o ha e some
o m o demen ia, wi h Alzheime ’s disease (AD) demen ia being
he mos common one, accoun ing o app oxima ely 60 o 70%
o cases (Wo ld Heal h O ganiza ion, 2017). Wo ldwide, AD is
one o he main causes o dependence and disabili y among
he elde ly (Alzheime ’s Associa ion, 2021).
Due o he de e io a ing and disabling na u e ha cha ac-
e ize demen ias, and in pa icula AD demen ia, he e is a g ow-
ing need o a ca egi e o help wi h he pa ien ’s day- o-day
needs (Alzheime Eu ope, 2019; Alzheime ’s Associa ion, 2021).
This ype o ca e is usually gi en in o mally (Alzheime ’s
Associa ion, 2021) and is mos egula ly pe o med by women,
wi h some ype o kinship wi h he AD pa ien , mos commonly
spouses and daugh e s (Alzheime ’s Associa ion, 2021). Abou
1/3 o amily ca egi e s a e 65 yea s o age o olde and, on
a e age, spend app oxima ely h ee hou s a day ca ing, and
mo e han hal o hose ca egi e s ha e p o ided his ype o
ca e o mo e han ou yea s (Alzheime ’s Associa ion, 2021).
In Po ugal, ca egi ing is commonly gi en by a amily membe
ha o en akes on his ole o se e al easons such as he eel-
ing o obliga ion d i en by social no ms; a sense o ‘gi ing back’;
emo ional ies; sense o du y; compassion; coe ced al uism; o
al uis ic mo i es (Cos a e al., 2019; Pope e al., 2017).
Due o he inc easing dependence o demen ia pa ien s on
amily ca egi e s o basic daily ac i i ies, he amily assumes a
pi o al ole in he ca e p o ided. The ca egi e ole equi es a
es uc u ing o amily dynamics o mee he e ol ing needs o
he pa ien (Lindeza e al., 2020; Luiu e al., 2020). Consequen ly,
he amily membe aking on he ca egi ing ole unde goes a
ans o ma i e p ocess ha may in oduce some ension in he
ela ionship wi h he amily (Gal in, 2013). Main aining he qual
-
i y o he amily ela ionship is c ucial in he demen ia ca e con-
ex as i may unc ion as a base o emo ional suppo , mo e
e ec i e communica ion and decision-making , mo e wellbeing
o bo h he ca egi e and he AD pa ien , and a mo e adap ed
ca egi ing en i onmen (Fa ina e al., 2017; Hazzan e al., 2022).
Resea ch sugges s a c i ical in e play be ween he quali y o
amily ela ionships and bo h he quali y o li e (QoL) and bu -
den expe ienced by amily ca egi e s. Family unc ioning issues,
such as communica ion, cohesion, and he alloca ion o espon-
sibili ies, a e signi ican ly associa ed wi h symp oms o dep es-
sion and s ess (Su e e al., 2014). Gi en ha ca egi ing is o en
a soli a y endea o and seeking assis ance may be pe cei ed
as a pe sonal sho coming, amily ca egi e s may s uggle wi h
g ea dis ess, o e ime. The dis ess may subsequen ly lead o
de e io a ing amily ela ionships, lowe QoL, and an inc eased
sense o bu den (Lindeza e al., 2020; Luiu e al., 2020).
The ac o ca ing o a pa ien wi h demen ia may be consid-
e ed a ch onic s esso , wi h a s able pa e n o pe cei ed dis-
ess o e ime in he amily ca egi e (Bo sje e al., 2016). The
li e a u e shows ha he dis ess expe ienced by he ca egi e
is associa ed wi h an agg a a ion o he pa ien ’s demen ia con-
di ion (Mank e al., 2023; S all e al., 2019, Välimäki e al., 2016)
and beha io al and psychological symp oms o demen ia (e.g.
i i abili y, agg ession/agi a ion, delusion) may also esul in
eelings o us a ion and ange , in he ca egi e . S udies also
indica e ha he g ea e he dis ess expe ienced, he wo se
amily ela ionships we e conside ed (Pe ei a e al., 2021), and
g ea e pe cei ed bu den (Liu e al., 2017) was also associa ed
wi h lowe ca egi e ’s QoL (Quinn e al., 2020).
To deal wi h he s ess associa ed wi h ca egi ing, coping
s a egies a e belie ed o play a pi o al ole in how he s ess is
© 2024 he Au ho (s). Published by in o ma UK limi ed, ading as aylo & F ancis g oup
CONTACT M. g aça Pe ei a [email p o ec ed].p
h ps://doi.o g/10.1080/13607863.2024.2320138
his is an Open Access a icle dis ibu ed unde he e ms o he C ea i e Commons A ibu ion-nonComme cial-noDe i a i es license (h p://c ea i ecommons.o g/licenses/by-nc-nd/4.0/),
which pe mi s non-comme cial e-use, dis ibu ion, and ep oduc ion in any medium, p o ided he o iginal wo k is p ope ly ci ed, and is no al e ed, ans o med, o buil upon in any way.
he e ms on which his a icle has been published allow he pos ing o he Accep ed Manusc ip in a eposi o y by he au ho (s) o wi h hei consen .
ARTICLE HISTORY
Recei ed 21 Sep embe 2023
Accep ed 31 Janua y 2024
KEYWORDS
Family ca egi e ; o gi eness;
bu den; quali y o li e
2 I. MONTEIRO ETAL.
pe cei ed and expe ienced (Pea lin e al., 1990). Hence, i is c u-
cial o explo e coping mechanisms ha may mi iga e he impac
o ca egi e s essand play a mode a ing ole. One such emo-
ion- ocused coping s a egy is o gi eness, de ined as an in a-
and in e pe sonal p ocess in ol ing he cul i a ion o posi i e
emo ions o alle ia e he s ess esponse (Wo hing on &
Sche e , 2004). Ca ing o an AD pa ien poses conside able
challenges o amily ca egi e s, and s udies indica e ha up o
one- hi d o amily ca egi e s expe ience some o m o abuse
(e.g. psychological abuse) om he pe son hey a e ca ing o
(S einsheim e al., 2022). In si ua ions whe e hu o disappoin -
men a ises, o gi eness becomes a ool o p ese e he quali y
o he ela ionship, becoming a ans o ma i e p ocess ega d-
ing hough s, beha io s, and emo ions ha change om neg-
a i e in o posi i e (S elan, 2018). I is essen ial o cla i y ha
o gi eness does no necessa ily imply ole a ing o o ge ing
he easons behind ansg essions; a he , i in ol es a conscious
decision o elease nega i e emo ions and enhance one’s own
well-being, he eby con ibu ing o heal hy ela ionships
(Wo hing on & Sche e , 2004). Acco ding o Thompson e al.
(2005), when he ac o o gi eness happens, he indi idual
eassesses he ansg ession and expe iences a shi in he pe -
cep ion o he w ongdoing. This esponse in ol es wo key
aspec s, each subjec o change: a) alence, pe aining o
whe he hough s, eelings, o beha io s a e nega i e, neu al,
o posi i e, and b) s eng h, ela ing o he in ensi y and in u-
si eness o he esponse. The e o e, he indi idual has he
capaci y o change he nega i e esponse igge ed by he
ansg ession by ei he con e ing he alence om nega i e
o neu al o posi i e, o by modi ying bo h he alence and he
s eng h o he esponse.
Gi en he ch onic na u e o ca egi e s ess, o gi eness holds
pa icula signi icance as i is ins umen al in p ese ing he am-
ily ela ionship, pa icula ly in si ua ions in ol ing beha io al and
emo ional changes in he pa ien being ca ed o (DeCapo ale-
Ryan e al., 2016). Which, in u n, is essen ial o ensu ing he
adequacy o ca e p o ided. Addi ionally, amily ca egi e s hem-
sel es may s uggle wi h eelings o sel -pe cei ed inadequacy,
guil associa ed wi h seeking help, o engaging in sel -ca e beha -
io s (Cheng e al., 2013). In such con ex s, o gi eness eme ges
as a aluable ool o p omo ing emo ional well-being and main-
aining he o e all heal h o ca egi e ela ionships.
The li e a u e on he ole o o gi eness in amily ca egi e s
in s ess managemen is s ill limi ed, bu some s udies indica e
ha he g ea e he use o o gi eness as a coping s a egy, he
lowe he ma i al dis ess (DeCapo ale-Ryan e al., 2016), he
highe he quali y o amily ela ionships, and he lowe he
s a e anxie y, dep essi e symp oma ology and bu den (Cheng
e al., 2013; Rasmussen e al., 2019). The ecu en use o o -
gi eness may be a nega i e p edic o o bu den in amily ca e-
gi e s (Cheng e al., 2013). Rasmussen e al. (2019) highligh ed
he bu e ing ole o o gi eness in mi iga ing he ad e se
e ec s o s esso s on heal h, e ealing a posi i e associa ion
be ween he p ac ice o o gi eness and bo h physical and men-
al heal h. The au ho s sugges ed ha o gi eness could posi-
i ely impac physical symp oms such as hea a e and ha e a
nega i e e ec on psychological symp oms such as s ess, anx-
ie y, and dep ession. Howe e , esea ch ha ocuses on he
mode a ing ole o o gi eness as a coping s a egy in amily
ca egi e s is s ill sca ce. Hence, i becomes impo an o in es-
iga e he mode a ing ole o o gi eness in he ela ionship
be ween amily ela ionships/dis ess and QoL/bu den.
Ca egi e bu den is a complex concep ha was de ined by
Kasuya e al. (2000) as being ‘a mul idimensional esponse o
physiological, emo ional, social and inancial s esso s associ-
a ed wi h he ca egi ing expe ience (p. 119). Li e a u e consis-
en ly epo s ha ca ing o a pa ien wi h AD is linked wi h
high bu den (Nemciko a e al., 2023; an den Kieboom e al.,
2020), and being a amily ca egi e is associa ed wi h g ea e
bu den compa ed o non-ca egi e s (Pinqua & Sö ensen,
2003). Mo e pe cei ed bu den has been associa ed o se e al
ac o s such as he leng h o he du a ion o ca e (Le hin e al.,
2020), he numbe o hou s o ca e (Yu e al., 2015), and no
choosing he ac o ca ing (Pe l e al., 2019). Addi ionally, he
li e a u e shows ha ca egi e bu den is posi i ely ela ed wi h
pe cei ed dis ess (Liu e al., 2017), and nega i ely ela ed wi h
he quali y o amily ela ionships (Yu e al., 2015), he use o
posi i e coping s a egies (Kazemi e  al., 2021) and QoL
(Abdollahpou e al., 2015).
Being a ca egi e o a pa ien wi h AD may impac se e al
domains o he ca egi e ’s li e, impac ing QoL (Pe ei a e al.,
2021). The concep o QoL in amily ca egi e s, as explained by
Fa ina e al. (2017), is in luenced by nume ous ac o s. Family
ca egi e s o en expe ience a wo se QoL compa ed o he gen-
e al popula ion (Välimäki e al., 2016) and amily ca egi e s o
pa ien s wi h o he ch onic diseases (Ka g e al., 2018). Fac o s
such as age, and no choosing he ca egi ing ole (Pe ei a e al.,
2021), longe du a ion o ca e (Fa ina e al., 2017), g ea e pe -
cei ed dis ess (Välimäki e al., 2016), wo se amily ela ionships
(Lindeza e  al., 2020), less use o posi i e coping s a egies
(Rod íguez-Pé ez e  al., 2017) and g ea e pe cei ed bu den
(Le hin e al., 2020) ha e been associa ed wi h wo se QoL.
While he exis ing li e a u e ex ensi ely explo es he impac
o psychological a iables on ca egi e bu den and QoL (e.g.
Chiao e al., 2015; Fa ina e al., 2017), he e emains a gap on how
coping s a egies, pa icula ly o gi eness, may play a mode a -
ing ole and con ibu e o lowe bu den and be e QoL in amily
ca egi e s (Rasmussen e al., 2019). Fo gi eness, beyond con-
ibu ing o imp o ed amily ela ionships and educed ca egi e
s ess (Cheng e al., 2013; Rasmussen e al., 2019), also showed
a posi i e impac on physical heal h (Rasmussen e al., 2019).
The e o e, s udying o gi eness in amily ca egi e s expe ienc-
ing high daily s ess, especially hose seeking o p ese e ela-
ionships wi h he AD pa ien , is c ucial. This s udy aims o
p o ide aluable insigh s o de elop in e en ions ha add ess
he speci ic needs o he amily ca egi e popula ion, o ul i-
ma ely p omo e be e QoL and educed bu den.
The S ess P ocess Model was de eloped by Pea lin e al.
(1990) and is cu en ly a e e ence in amily ca egi e s as
one o he ew speci ic models o his popula ion being
widely used (e.g. Pe ei a e al., 2021). The model p oposes
ha s ess is a p ocess ha includes ou domains: 1) he
backg ound/con ex o he ca egi e (e.g. age, gende , ype
o demen ia); 2) he s esso s ela ed o he ac o ca egi ing,
ha may be p ima y s esso s (i.e. di ec ly associa ed wi h
he ac o ca ing) and seconda y s esses (i.e. ha a e he
esul o p ima y s esso s); 3) he ou comes o mani es a-
ions o s ess, which a e he consequence o he p e ious
domains; and 4) he media o s/mode a o s ha impac he
ela ionship be ween he a iables in ol ed in he p ocess.
Al hough in he o iginal e sion, bu den is conside ed a p i-
ma y s esso , in his s udy i will be used as an ou come,
like o he s udies ha e done (Roland & Chappell, 2019).
Using a modi ied e sion o he p oposed heo e ical model
AGING & MENTAL HEALTH 3
and in o de o ill he cu en gaps in he li e a u e in amily
ca egi e s o pa ien s wi h AD, he p esen s udy aims o: 1)
e alua e he ela ionship be ween sociodemog aphic and
psychological a iables wi h QoL and ca egi e bu den; 2)
o assess he con ibu ion o sociodemog aphic and psycho-
logical a iables o QoL and ca egi e bu den; and 3) o
assess he mode a ing ole o o gi eness as a coping s a -
egy be ween seconda y s esso s (i.e. dis ess and amily
ela ionships) and QoL/bu den. Thus, in o de o answe he
goals o he p esen s udy, he ollowing hypo heses we e
o mula ed: H1: I is expec ed ha , being olde , longe du a-
ion o ca e, g ea e daily numbe o hou s o ca e, no
choosing he ole o ca egi e and g ea e pe cei ed dis ess
will be nega i ely associa ed wi h QoL and posi i ely asso-
cia ed wi h bu den, while g ea e o gi eness and be e
amily ela ionships will be posi i ely associa ed wi h QoL
and nega i ely associa ed wi h bu den; H2: I is expec ed
ha younge age, sho e du a ion o ca e, less hou s o
ca egi ing pe day, choice o ca egi ing, less pe cei ed dis-
ess, good amily ela ionships and g ea e use o o gi e-
ness will con ibu e o a be e QoL and lowe bu den H3:
Fo gi eness is expec ed o play a mode a ing ole in he
ela ionship be ween seconda y s esso s and QoL/bu den.
Me hod
Pa icipan s and p ocedu e
Family ca egi e s we e ec ui ed h ough he Resea ch-Ac ion
Demen ia P ojec using a con enien sample. Inclusion c i e ia
we e: a) being a ca egi e o a pa ien wi h AD; b) being 18 yea s
old o abo e; and c) being in he ca egi ing ole o a leas h ee
mon hs. Exclusion c i e ion included: a) ca ing o an ins i u-
ionalized pa ien wi h AD and b) ecei ing psychological sup-
po . Da a collec ion was ca ied ou in a home con ex and
included use s o he Po uguese Na ional Heal h Sys em diag-
nosed wi h demen ia in he No he n egion o Po ugal. Ou
o 175 amily ca egi e s in i ed, 8 did no ag ee o pa icipa e
and 37 did no mee he c i e ia o he s udy. The p esen s udy
was app o ed by he E hics Commi ee o Resea ch in Social
and Human Sciences (CEICSH/0462020) om a majo Uni e si y
in No hen Po ugal.
Measu es
Pa icipan s answe ed he ollowing ins umen s ha we e al-
ida ed o he Po uguese popula ion:
Hea land Fo gi eness Scale (HFS; Thompson e al., 2005) is an
18-i em sel - epo ques ionnai e designed o assess he gen-
e al endency owa d o gi eness (i.e. disposi ional o gi eness)
o o he s, onesel , and si ua ions, h ough i ems o posi i e and
nega i e alence. Sco es ange be ween 18 and 126, wi h highe
sco es indica ing highe use o o gi eness. The o iginal e sion
showed an alpha o he o al scale o .86 and in his s udy he
alpha was .85. and he omega .87.
Dep ession, Anxie y and S ess Scale – Sho Fo m (DASS21;
Lo ibond & Lo ibond, 1995) is a 21-i em sel - epo ins umen
ha assesses emo ional s a es associa ed wi h dep ession,
s ess and anxie y. Sco es ange om ze o o 63 and highe
alues indica e g ea e anxie y, dep ession and s ess. The
o iginal e sion showed an alpha o .93 o he global scale
(Hen y & C aw o d, 2005) and, in his s udy, he alpha and
omega we e bo h .97.
The Index o Family Rela ions (IFR; Hudson, 1993) is a sel - epo
ins umen ha assesses p oblems o social and pe sonal unc-
ioning in he con ex o amily adjus men , whe e he sco e
can a y be ween ze o and 100 poin s, and highe alues indi-
ca e g ea e amily s ess. The o iginal e sion showed an alpha
o .95 and in his s udy, he alpha was .81 and he omega .90.
Bu den In e iew Scale (BIS; Za i & Za i , 1983) is a sel - epo
ins umen ha assesses he ca egi e ’s subjec i e and objec-
i e bu den in 22 i ems. Sco es ange om ze o o 88, whe e
highe alues indica e g ea e subjec i e and objec i e bu den.
The o iginal e sion showed an alpha o .84. and, in his s udy,
he alpha and omega we e bo h .94.
Sho Fo m Heal h Su ey (SF-36; Wa e e al., 1993) is a sel - epo
ins umen ha assesses wo dimensions o QoL (i.e. physical
heal h and men al heal h) h ough 8 componen s, namely phys-
ical pe o mance, physical, pain, men al heal h, gene al heal h
s a us, i ali y, men al pe o mance and social unc ion. I has
36 i ems dis ibu ed in ques ions wi h Like and dicho omous
scales. The ins umen has a sco e ha a ies be ween ze o and
100 poin s and highe alues in he physical/men al dimension
indica e a be e unc ioning o physical/men al heal h. The
o iginal e sion showed an alpha o .94 o he o al scale
(Gue mazi e al., 2012) and in his s udy, he alpha was .94 and
he omega .99.
Da a analysis
The da a ob ained was analyzed using he IBM S a is ical
Package o he Social Sciences (SPSS) e sion 28. The da abase
included no missing da a since pa icipan s answe ed he
ins umen s in an in e iew o ma and no ou lie s we e ound.
To e alua e he ela ionships be ween he a iables (H1) a
Pea son co ela ion es was used and he Poin -Bisse al coe -
icien . To unde s and which a iables con ibu ed o he ca e-
gi e ’s QoL (H2), a hie a chical linea eg ession (en e me hod)
was pe o med. Finally, o assess he mode a ing ole o o -
gi eness as coping s a egies (H3), he Mac o PROCESS com-
mand e sion 3.4.1 was used o SPSS and he Johnson-Neyman
echnique (Johnson & Fay, 1950) was employed. All he
assump ions o mode a ion we e p esen excep when es -
ing he ela ionship be ween dis ess and QoL/bu den since
dis ess (independen a iable) showed a e y high co ela ion
(>0.50) wi h o gi eness (mode a o a iable), iola ing he
assump ion.
The Johnson-Neyman echnique allows a p ecise compu a-
ion o condi ions and bounda ies, showing he ins ances whe e
a mode a o elici s s a is ically signi ican slopes (Baue &
Cu an, 2005).
Resul s
Sample cha ac e is ics
The sample o his s udy consis ed o 130 Po uguese amily
ca egi e s o pa ien s wi h AD. The cha ac e iza ion o he sam-
ple is shown in Table 1.
4 I. MONTEIRO ETAL.
Va iables associa ed wi h QoL and bu den
Rega ding he sociodemog aphic a iables, he co ela ion es
showed ha he olde he amily ca egi e , he wo se he QoL.
Also, amily ca egi e s who did no choose o be a ca egi e ,
epo ed mo e bu den.
Rega ding psychological a iables, he esul s indica ed ha
he g ea e use o o gi eness was associa ed wi h be e amily
ela ionships; less pe cei ed dis ess, be e QoL and less ca e-
gi e bu den. In addi ion, g ea e use o o gi eness wasasso-
cia ed wi h be e amily ela ionships and lowe pe cei ed
dis ess. Finally, be e amily ela ionships we e associa ed wi h
lowe pe cei ed dis ess. The esul s a e shown in Table 2.
Con ibu ing a iables o QoL and bu den
In model 1, he con ibu ion o sociodemog aphic a iables o
QoL was analyzed. The model indica ed ha amily ca egi e ’s
age con ibu ed signi ican ly o QoL, explaining 8% o he o al
a iance. When adding he psychological a iables (model 2),
amily ela ionships, pe cei ed dis ess and he use o o gi e-
ness, he o al explained a iance o he ca egi e ’s QoL
inc eased o 42.6%. In his model, age, he use o o gi eness
and pe cei ed dis ess con ibu ed signi ican ly o QoL, while
amily ela ionships did no .
Model 3 es ed he con ibu ion o sociodemog aphic a i-
ables o bu den and indica ed ha he choice o be a amily
ca egi e explained 10.9% o ca egi e bu den. When psycho-
logical a iables we e added (model 4), he choice o be a ca e-
gi e , dis ess and o gi eness con ibu ed o ca egi e bu den,
explaining 52.1% o ca egi e bu den (R2 = 0.521), while amily
ela ionships showed no con ibu ion (Table 3).
The mode a ing ole o o gi eness
When es ing he mode a ing ole o o gi eness in he ela-
ionship be ween amily ela ionships and QoL, no signi ican
esul s we e ound (β = 0.0048, 95% CI [−0.0083, 0.0180],
= 0.7308, p = 0.4663). Howe e , he model ha es ed he
mode a ing ole o o gi eness in he ela ionship be ween
amily ela ionships and bu den was signi ican (F (3.126) =
26.3708, p = 0.0000, β = −0.0157, = −2.1908, CI [−0.0299,
−0.0015] p = 0.0303) and explained 38.57% o he a iance.
The Johnson-Neyman echnique indica ed ha amily ela-
ionships we e signi ican ly co ela ed wi h bu den when he
s anda dized alue o o gi eness was93.90 abo e he mean
(β = 0.2158, p = 0.0500), co esponding o 53.08% o he sam-
ple (Figu e 1).
The mode a ing ole o o gi eness in he ela ionship
be ween dis ess and QoL/bu den could no be es ed, as he
mode a ion assump ions we e no me as desc ibed in he da a
analysis.
Discussion
The s udy indings e ealed a signi ican associa ion be ween
amily ca egi e s’ age and hei QoL. These esul s a e in acco -
dance wi h he li e a u e ha sugges s a nega i e co ela ion
be ween age and QoL (Pe ei a e al., 2021). A plausible expla-
na ion o his ou come may ha e o do wi h he aging p ocess
being esponsible o a g adual decline in amily ca egi e s’
heal h such as he possible onse o ch onic condi ions, impac -
ing hei QoL (Fage s öm e al., 2020). Howe e , age was no
signi ican ly associa ed wi h bu den, which con as s wi h he
li e a u e ha i shows ha being olde is associa ed wi h mo e
pe cei ed bu den (Kim e al., 2012). One possible explana ion
o his esul is ha age may no be linea ly associa ed wi h
bu den, ha is, di e en le els o bu den migh mani es a se -
e al s ages o he ca egi ing p ocess, o e ime (Chiao e al.,
2015). This same au ho s a es ha he ac o ca egi ing is a
comple e and dynamic p ocess in which o he ac o s, ega d-
less o he ca egi e ’s age , such as ha ing p e ious expe ience
as a ca egi e o esponsibili y beyond he ac o ca ing, may
explain di e en pa e ns o he ca e bu den esponse. Fo
Table 1. Sociodemog aphic cha ac e iza ion o amily ca egi e s o pa ien s wi h AD.
Con inuous Va iables Min Max Medium SD
Age 42 92 66.15 13.64
educa ion 0 20 4.53 3.58
Du a ion o ca e (yea s) 0.5 9 3.98 2.20
Ca ego ical Va iables F equency %
Sex
Male 29 22.3
Female 101 77.7
Ma i al S a us
Ma ied 109 83.8
Unma ied 21 16.2
Deg ee o Kinship
Pa en s 55 42.3
Companion 58 44.6
O he s 17 13.1
Ca egi ing hou s
0–12h 7 5.4
13–24h 123 94.6
1s ime ca egi e
Yes 92 70.8
no 38 29.2
Choose o ca e
Yes 103 79.2
no 27 20.8
Seconda y ca e
Yes 71 54.6
no 59 45.4
Table 2. Rela ionship be ween sociodemog aphip and psychological a iables.
Va iables 1 2 3 4 5 6 7 8 9
1. Quali y o li e 1
2. Bu den −0.483** 1
3. Age −0.295** −0.009 1
4. Du a ion o ca e −0.023 .092 −0.030 1
5. Hou s o ca e −0.146 −0.028 .231** .091 1
6. Choice o ca e −0.162 .340** −0.067 .065 −0.214*
7. Family ela ionship −0.223*.252** −0.057 −0.053 −0.055 .056 1
8. Dis ess −0.556** .625** −0.012 −0.059 .076 .152 .218*1
9. Fo gi eness .477** −0.585** −0.072 .044 .144 −0.203** −0.195*−0.510** 1
Mean 66.63 29.31 10.28 14.68 94.75
S anda d De ia ion 15.92 19.07 12.45 16.98 17.42
*p < 0.05; **p < 0.01.

AGING & MENTAL HEALTH 5
ins ance, being younge migh be associa ed wi h g ea e pe -
cei ed bu den due o inexpe ience in ca egi ing, ha ing o he
esponsibili ies such as ha ing a ull- ime job, ha ing small chil-
d en o e en ha ing mo e inancial s ains. O e ime, he bu -
den could dec ease as he amily ca egi e adap s mo e
e ec i ely o he demands o he ca egi ing asks as a esul o
mo e expe ience, being e i ed, o ha ing no o he ca egi ing
oles (e.g. ca ing o he o sp ing).
In his s udy, no signi ican associa ions we e ound be ween
he numbe o hou s o ca egi ing and he du a ion o ca e
wi h bo h QoL and bu den. Howe e , he li e a u e indica es
ha he numbe o hou s and du a ion o ca e a e nega i ely
associa ed wi h QoL (Fa ina e al., 2017; Pe ei a e al., 2021) and
posi i ely associa ed wi h bu den (Le hin e al., 2020; Yu e al.,
2015). The numbe o hou s o ca egi ing, in his s udy, was
assessed by asking whe he ca egi ing asks ook up o less
han 12 h o mo e pe day, and a possible explana ion o hese
esul s migh be he ac ha 94.6% o he sample spen mos
o hei day ca ing o he pa ien wi h AD and, he e o e, was
no possible o es whe he he inc ease o dec ease in he
numbe o hou s was ela ed o he bu den and QoL. Fu u e
s udies may need o assess numbe o hou s is a mo e inc e-
men al manne .
On one hand, no choosing he ac o ca egi ing was
associa ed wi h g ea e bu den, wha is in acco dance wi h
he li e a u e since. when amily ca egi e s eel hey ha e
chosen o become a ca egi e , hey a e mo e likely o iden-
i y posi i e aspec s ela ed o he ca egi ing ole, which
po en ially may lead o less pe cei ed bu den (Pe l e al.,
2019). On he o he hand, he choice o he ac o ca egi ing
was no signi ican ly associa ed wi h QoL. One possible
explana ion o his esul could be he ac ha QoL was
assessed using a gene ic QoL ins umen , which may lack
sensi i i y o speci ic ca egi ing issues (e.g. i em 3e: Does
you heal h now limi you in climbing one ligh o s ai s?).
Fu u e s udies could explo e his esul u he using a spe-
ci ic ins umen designed o amily ca egi e s o pa ien s
wi h AD.
In his s udy, a posi i e ela ionship was iden i ied be ween
amily ela ionships and bu den, while a nega i e ela ionship
was obse ed be ween amily ela ionships and QoL. In o he
wo ds, as he quali y o amily ela ionships declines, ca egi e
bu den ended o inc ease, and con e sely, when he quali y o
amily ela ionships imp o es, QoL also ended o inc ease.
These indings a e consis en wi h he exis ing li e a u e, indi-
ca ing ha amily ca egi e s who epo ed posi i e amily ela-
ionships expe ienced lowe pe cei ed bu den and highe QoL
(Lindeza e al., 2020). This associa ion may be linked o he pe -
cep ion o g ea e suppo om he amily owa ds he ca egi -
ing ole.
Dis ess, in his s udy, was posi i ely associa ed wi h bu den
and nega i ely associa ed wi h QoL. These inding is in acco -
dance wi h p e ious s udies which indica e ha he g ea e he
pe cei ed dis ess, he g ea e he bu den (Messina e al., 2022)
and he lowe he QoL (Pe ei a e al., 2021; Quinn e al., 2020).
Consequen ly, symp oms o anxie y, dep ession and s ess may
be associa ed wi h ca egi e ’s de ici s in he physical, men al,
and social unc ioning, which may impac hei QoL (Fa ina
Table 3. Va iables ha con ibu e o quali y o li e and bu den.
Quali y o li e Bu den
Model 1 Model 2 Model 3 Model 4
Va iables B ePB β B ePB β B ePB β B ePB β
Age −0.345 .099 −0.295*** −0.327 .078 −0.280***
Choice o ca e 15.926 3.892 .340*** 9.767 2.919 .209**
Family ela hionship −0.134 .088 −0.105 .137 .096 .089
Dis ess −0.389 .073 −0.389*** .464 .081 .413***
Fo gi eness .205 .072 .205** −0.345 .079 −0.315***
R² (R²AJ.) .087 (.080) .509 (.497) .116 (.109) .536 (.521)
F o change in R²12.243** 43.496** 16.740*** 37.701***
**p < 0.01; ***p < 0.001.
Figu e 1. Mode a ing ole o o gi eness in he ela ionship be ween amily ela ionship and bu den.
6 I. MONTEIRO ETAL.
e al., 2017). These de ici s may also lead o a g ea e impai men
in he amily ca egi e ’s ole, which in u n, may con ibu e o
a g ea e ca egi e ’s bu den (Chiao e al., 2015).
The use o o gi eness was posi i ely associa ed wi h QoL
and nega i ely associa ed wi h bu den. Rey and Ex eme a
(2016) and DeCapo ale-Ryan e al. (2016), ound ha indi iduals
who used o gi eness expe ienced lowe pe cei ed bu den and
highe QoL. Fo gi eness may wo k as a coping s a egy ha
bu e s he pe cep ion o s ess, when ca ing o a pa ien wi h
AD, educing he pe cei ed subjec i e bu den and, as a esul ,
inc easing he pe cep ion o a be e QoL, in he amily ca egi e .
In his s udy, age, pe cei ed dis ess, and he use o o gi e-
ness eme ged as signi ican con ibu o s o QoL, ollowing p e-
ious esea ch on he in luence o age on pe cei ed dis ess
(Pe ei a e al., 2021), and he use o o gi eness as a coping
s a egy (Gull & Rana, 2013) on QoL. This esul unde sco es he
signi icance o bo h he con ex ual/backg ound aspec s and
he psychological ac o s in shaping amily ca egi e ’s QoL.
Con a y o wha was hypo hesized, howe e , amily ela ion-
ships did no signi ican ly con ibu e o ca e gi e ’s QoL. Exis ing
li e a u e sugges s ha when amily ela ionships p edic QoL,
p oblema ic amily ela ionships a e associa ed wi h a decline
in pe cei ed QoL (Lindeza e al., 2020). One possible explana ion
o hese unexpec ed esul s could be a ibu ed o he ema k-
ably low sco es eco ded in he IFR ins umen showing ha
amily ca egi e s epo ed a e y low le el o amily s ess.
Consequen ly, he lack o a iabili y in he sample may ha e
p e en ed a disce nible ela ionship be ween he quali y o
amily ela ionships and QoL.
Consis en wi h p e ious s udies, he a iables ha signi i-
can ly con ibu ed o bu den we e he choice o he ac o ca e-
gi ing (Pe l e al., 2019), pe cei ed dis ess (Liu e al., 2017) and
he use o o gi eness (Cheng e al., 2013). Li e a u e shows ha
p oblema ic amily ela ionship signi ican ly p edic bu den
(Luiu e al., 2020). Howe e , in his s udy, amily ela ionship did
no con ibu e o ca egi e bu den, p obably o he same ea-
son ha amily ela ionship did no con ibu e o QoL i.e. he
low amily s ess epo ed by he sample.
The esul s e ealed ha o gi eness mode a ed he ela-
ionship be ween amily ela ionships and bu den. Speci ically,
when he amily ca egi e showed lowe le els o o gi eness,
he ela ionship be ween wo se amily ela ionships and g ea e
bu den was s onge . Thus, o gi eness may assume a mi iga -
ing o bu e ing ole in he in e play be ween amily ela ion-
ships and bu den. The li e a u e suppo s he no ion o
o gi eness as a mode a ing a iable, as e idenced in se e al
popula ions such as amily and iends o people who died by
suicide (Le i-Belz & Gilo, 2020), pa ien s wi h kidney disease on
hemodialysis (Ye e  al., 2019) and pa ien s wi h pso iasis
(Thompson, 2003). The mode a ing ole o o gi eness is con-
side ed a coping s a egy, playing a c ucial ole in p ese ing
he quali y o amily ela ionships and educing he pe cei ed
s ess di ec ly associa ed wi h ca egi ing. As a coping s a egy,
o gi eness, in u n, may alle ia e he ela ionship be ween
amily ela ionships and ca egi e bu den (Campbell e al., 2008;
Cheng e al., 2013). Howe e , con a y o expec a ions, o gi e-
ness was no a mode a o in he ela ionship be ween amily
ela ionships and QoL. This ou come may ha e o do wi h he
ins umen used o assess QoL, he SF-36, ha may be oo
gene ic and no sensi i e enough o assess issues ela ed o
ca egi ing ha may impac QoL while he ins umen o assess
bu den (BIS) was speci ic o ca egi e s.
The heo e ical model by Pea lin e al. (1990) was an ade-
qua e model o assess QoL and bu den in his sample o amily
ca egi e pa ien s wi h AD. In ac , o gi eness was a mode a o
be ween amily ela ionships and bu den, as sugges ed by he
model. Based on he esul s, i would be impo an o de elop
in e en ion p og ams, ocused on o gi eness, o inc ease QoL
and educe he bu den, in his popula ion.
Limi a ions and u u e implica ions
The p esen s udy has limi a ions ha a e impo an o conside
such as he c oss-sec ional design ha does no allow causal
ela ionships, he low le el o amily ca egi e ’s educa ion, he
use o only sel - epo ins umen s and he ac ha all pa ici-
pan s li ed in he same municipali y. Fu u e s udies should
ollow a longi udinal design, include amily ca egi e s om
o he egions o he coun y , and include also amily ca egi e s
wi h highe educa ion. Quali a i e s udies a e also impo an
o analyze in mo e dep h, dimensions ha a e limi ed by he
quan i a i e na u e o he ins umen s used, namely o gi eness
o o he s and onesel , in he con ex o p o iding ca e o a am-
ily membe .
Finally, i will be impo an in he u u e, o ocus on he ole
o o gi eness as a media o be ween ca egi e bu den and
QoL, o e ime, as AD p og esses. Ano he pe inen issue ha
is impo an o add ess and explo e is he ole o pa ien ’s o -
gi eness owa ds hei amily ca egi e s when hey eel hey
a e no being well aken ca e.
Conclusion
This s udy ocused on QoL and bu den in amily ca egi e s o
AD pa ien s. Conside ing he esul s, i would be essen ial ha
heal h p o essionals when assessing he pa ien also include
he ca egi e , especially olde amily ca egi e s who did no
choose he ca egi e ole. Gi en he mode a ing ole o o gi e-
ness in he ela ionship be ween amily ela ionships and bu -
den, i is impo an ha in e en ions include o gi eness as a
coping mechanism o he amily ca egi e , o he amily mem-
be s and he pa ien as well. The au hos also belie e ha men al
heal h p o essionals when p omo ing o gi eness, , should also
add ess emo ion egula ion skills (e.g. educ ion in esen men ),
ela ionship dynamics (e.g. communica ion), sel -ca e, and be -
e accep ance o he ca egi ing ole.
Disclosu e s a emen
No po en ial con lic o in e es was epo ed by he au ho (s).
Funding
This s udy was conduc ed a he Psychology Resea ch Cen e
(PSI/01662), School o Psychology, Uni e si y o Minho, suppo ed by
he Founda ion o Science and Technology (FCT) h ough he
Po uguese S a e Budge (Re .: UIDB/PSI/01662/2020).
ORCID
Isabela Mon ei o h p://o cid.o g/0000-0003-4477-086X
Lau a B i o h p://o cid.o g/0000-0002-5564-5231
M. G aça Pe ei a h p://o cid.o g/0000-0001-7987-2562
AGING & MENTAL HEALTH 7
Re e ences
Abdollahpou , I., Nedja , S., Salimi, Y., No oozian, M., & Majdzadeh, R.
(2015). Which a iable is he s onges adjus ed p edic o o quali y o
li e in ca egi e s o pa ien s wi h demen ia?: QOL p edic o s in demen-
ia ca egi e s. Psychoge ia ics, 15(1), 51–57. h ps://doi.o g/10.1111/
psyg.12094
Alzheime Eu ope. (2019). Demen ia in eu ope yea book 2019: Es ima ing
he p e alence o demen ia in Eu ope. h ps://www.alzheime eu ope.
o g/con en /download/195515/1457520/ ile/FINAL%2005707%20
Alzheime %20Eu ope%20yea book%202019.pd
Alzheime ’s Associa ion. (2021). 2021 Alzheime ’s disease ac s and igu es.
Alzheime ’s & Demen ia, 17(3), 327–406. h ps://doi.o g/10.1002/alz.12328
Baue , D. J., & Cu an, P. J. (2005). P obing in e ac ions in ixed and mul ile el
eg ession: In e en ial and g aphical echniques. Mul i a ia e Beha io al
Resea ch, 40(3), 373–400. h ps://doi.o g/10.1207/s15327906mb 4003_5
Bo sje, P., Hems, M. A. P., Lucassen, P. L. B. J., Bo , H., Koopmans, R. T. C. M., &
Po , A. M. (2016). Psychological dis ess in in o mal ca egi e s o pa-
ien s wi h demen ia in p ima y ca e: Cou se and de e minan s. Family
P ac ice, 33(4), 374–381. h ps://doi.o g/10.1093/ amp a/cmw009
Campbell, P., W igh , J., Oyebode, J., Job, D., C ome, P., Ben ham, P., Jones,
L., & Lendon, C. (2008). De e minan s o bu den in hose who ca e o
someone wi h demen ia. In e na ional Jou nal o Ge ia ic Psychia y,
23(10), 1078–1085. h ps://doi.o g/10.1002/gps.2071
Cheng, S.-T., Ip, I. N., & Kwok, T. (2013). Ca egi e o gi eness is associa ed
wi h less bu den and po en ially ha m ul Beha io s. Aging & Men al
Heal h, 17(8), 930–934. h ps://doi.o g/10.1080/13607863.2013.791662
Chiao, C.-Y., Wu, H.-S., & Hsiao, C.-Y. (2015). Ca egi e bu den o in o mal
ca egi e s o pa ien s wi h demen ia: A sys ema ic e iew. In e na ional
Nu sing Re iew, 62(3), 340–350. h ps://doi.o g/10.1111/in .12194
Cos a, M. B. A. L. D., De F ei as Paúl, M. C. L., Da Cos a Aze edo, M. J. T., &
Gomes, J. C. R. (2019). Mo i ações dos cuidado es in o mais de pessoas
com demência e o pa adoxo do cuidado. Re is a Ele ônica Ace o
Saúde, 11(18), e2620. h ps://doi.o g/10.25248/ eas.e2620.2019
DeCapo ale-Ryan, L. N., S e en, A. M., Ma wi , S. J., & Meuse , T. M. (2016).
Demen ia spousal ca egi e s and pas ansg essions: Measu ing and
unde s anding o gi eness expe iences. Jou nal o Women & Aging,
28(6), 510–520. h ps://doi.o g/10.1080/08952841.2015.1065143
Fage s öm, C., Elms åhl, S., & W anke , L. S. (2020). Analyzing he si ua ion
o olde amily ca egi e s wi h a ocus on heal h- ela ed quali y o li e
and pain: A c oss-sec ional coho s udy. Heal h and Quali y o Li e
Ou comes, 18(1), 79. h ps://doi.o g/10.1186/s12955-020-01321-3
Fa ina, N., Page, T. E., Daley, S., B own, A., Bowling, A., Basse , T., Li ings on,
G., Knapp, M., Mu ay, J., & Bane jee, S. (2017). Fac o s associa ed wi h
he quali y o li e o amily ca e s o people wi h demen ia: A sys ema -
ic e iew. Alzheime ’s & Demen ia: The Jou nal o he Alzheime ’s
Associa ion, 13(5), 572–581. h ps://doi.o g/10.1016/j.jalz.2016.12.010
Gal in, J. (2013). PC-04–03: The impo ance o amily and ca egi e in he
ca e and managemen o people wi h Alzheime ’s disease. Alzheime ’s
& Demen ia, 9(4S_Pa _1), 1-2. h ps://doi.o g/10.1016/j.jalz.2013.04.012
Gue mazi, M., Allouch, C., Yahia, M., Huissa, T. B. A., Gho bel, S., Damak, J.,
M ad, M. F., & Elleuch, M. H. (2012). T ansla ion in a abic, adap a ion and
alida ion o he s -36 heal h su ey o use in unisia. Annals o Physical
and Rehabili a ion Medicine, 55(6), 388–403. h ps://doi.o g/10.1016/j.
ehab.2012.05.003
Gull, M., & Rana, S. (2013). Mani es a ion o o gi eness, subjec i e well be-
ing and quali y o li e. Jou nal o Beha iou al Sciences, 23(2), 19–36.
h ps://www.seman icschola .o g/pape /Mani es a ion-o -
Fo gi eness%2C-Subjec i e-Well-Being-Gull-Rana/d03ac 4b1839878a
4d441634919ee739ae52dcc6
Hazzan, A. A., Dauenhaue , J., Follansbee, P., Hazzan, J. O., Allen, K., &
Omobepade, I. (2022). Family ca egi e quali y o li e and he ca e p o-
ided o olde people li ing wi h demen ia: Quali a i e analyses o
ca egi e in e iews. BMC Ge ia ics, 22(1), 86. h ps://doi.o g/10.1186/
s12877-022-02787-0
Hen y, J. D., & C aw o d, J. R. (2005). The sho - o m e sion o he
Dep ession Anxie y S ess Scales (DASS-21): Cons uc alidi y and no -
ma i e da a in a la ge non-clinical sample. B i ish Jou nal o Clinical
Psychology, 44(2), 227–239. h ps://doi.o g/10.1348/014466505X29657
Hudson, W. (1993). The walmy assessmen scales sco ing manual: Index o
amily ela ions (ed.). Walmy Publishing Company.
Johnson, P. O., & Fay, L. C. (1950). The Johnson-Neyman echnique, i s he-
o y and applica ion. Psychome ika, 15(4), 349–367. h ps://doi.
o g/10.1007/BF02288864
Ka g, N., G aessel, E., Randzio, O., & Pende g ass, A. (2018). Demen ia as a
p edic o o ca e- ela ed quali y o li e in in o mal ca egi e s: A
c oss-sec ional s udy o in es iga e di e ences in heal h- ela ed ou -
comes be ween demen ia and non-demen ia ca egi e s. BMC
Ge ia ics, 18(1), 189. h ps://doi.o g/10.1186/s12877-018-0885-1
Kasuya, R. T., Polga -Bailey, P., & Takeuchi, R. (2000). Ca egi e bu den and
bu nou . A guide o p ima y ca e physicians. Pos g adua e Medicine,
108(7), 119–123. h ps://doi.o g/10.3810/pgm.2000.12.1324
Kazemi, A., Azimian, J., Ma i, M., Allen, K.-A., & Mo alebi, S. A. (2021). Ca egi e
bu den and coping s a egies in ca egi e s o olde pa ien s wi h s oke.
BMC Psychology, 9(1), 51. h ps://doi.o g/10.1186/s40359-021-00556-z
Kim, H., Chang, M., Rose, K., & Kim, S. (2012). P edic o s o ca egi e bu den
in ca egi e s o indi iduals wi h demen ia: P edic o s o ca egi e bu -
den. Jou nal o Ad anced Nu sing, 68(4), 846–855. h ps://doi.
o g/10.1111/j.1365-2648.2011.05787.x
Le hin, C., Leino-Kilpi, H., Bleijle ens, M. H., S ephan, A., Ma in, M. S.,
Nilsson, K., Nilsson, C., Zabalegui, A., & Ka lsson, S. (2020). P edic ing
ca egi e bu den in in o mal ca egi e s ca ing o pe sons wi h demen-
ia li ing a home: A ollow-up coho s udy. Demen ia (London,
England), 19(3), 640–660. h ps://doi.o g/10.1177/1471301218782502
Le i-Belz, Y., & Gilo, T. (2020). Emo ional dis ess among suicide su i o s:
The mode a ing ole o sel - o gi eness. F on ie s in Psychia y, 11, 341.
h ps://doi.o g/10.3389/ psy .2020.00341
Lindeza, P., Rod igues, M., Cos a, J., Gue ei o, M., & Rosa, M. M. (2020).
Impac o demen ia on in o mal ca e: A sys ema ic e iew o amily
ca egi e s’ pe cep ions. BMJ Suppo i e & Pallia i e Ca e, bmjsp-
ca e-2020-002242. h ps://doi.o g/10.1136/bmjspca e-2020-002242
Liu, S., Li, C., Shi, Z., Wang, X., Zhou, Y., Liu, S., Liu, J., Yu, T., & Ji, Y. (2017).
Ca egi e bu den and p e alence o dep ession, anxie y and sleep dis-
u bances in Alzheime ’s disease ca egi e s in China. Jou nal o Clinical
Nu sing, 26(9-10), 1291–1300. h ps://doi.o g/10.1111/jocn.13601
Lo ibond, P. F., & Lo ibond, S. H. (1995). The s uc u e o nega i e emo ion-
al s a es: Compa ison o he dep ession anxie y s ess scales (Dass) wi h
he beck dep ession and anxie y in en o ies. Beha iou Resea ch and
The apy, 33(3), 335–343. h ps://doi.o g/10.1016/0005-7967(94)00075-u
Luiu, A. L., Fa ez, N., Be ancou , M., Szilas, N., & Eh le , F. (2020). Family ela ion-
ships and alzheime ’s disease: A sys ema ic e iew. Jou nal o Alzheime ’s
Disease: JAD, 76(4), 1595–1608. h ps://doi.o g/10.3233/JAD-200125
Mank, A., Van Mau ik, I. S., Rijnha , J. J. M., Rhodius-Mees e , H. F. M., Visse ,
L. N. C., Lems a, A. W., Sikkes, S. A. M., Teunissen, C. E., Van Giessen, E. M.,
Be kho , J., & Van De Flie , W. M. (2023). De e minan s o in o mal ca e
ime, dis ess, dep ession, and quali y o li e in ca e pa ne s along he
ajec o y o Alzheime ’s disease. Alzheime ’s & Demen ia (Ams e dam,
Ne he lands), 15(2), e12418. h ps://doi.o g/10.1002/dad2.12418
Messina, A., La anzi, M., Albanese, E., & Fio delli, M. (2022). Ca egi e s o
people wi h demen ia and men al heal h du ing COVID-19: Findings
om a c oss-sec ional s udy. BMC Ge ia ics, 22(1), 56. h ps://doi.
o g/10.1186/s12877-022-02752-x
Nemciko a, M., Ka eniako a, Z., & Nagyo a, I. (2023). Social suppo , posi-
i e ca egi ing expe ience, and ca egi e bu den in in o mal ca egi e s
o olde adul s wi h demen ia. F on ie s in Public Heal h, 11, 1104250.
h ps://doi.o g/10.3389/ pubh.2023.1104250
Pea lin, L. I., Mullan, J. T., Semple, S. J., & Ska , M. M. (1990). Ca egi ing and
he s ess p ocess: An o e iew o concep s and hei measu es. The
Ge on ologis , 30(5), 583–594. h ps://doi.o g/10.1093/ge on /30.5.583
Pe ei a, M. G., Ab eu, A. R., Rego, D., Fe ei a, G., & Lima, S. (2021).
Con ibu o s and mode a o s o quali y o li e in ca egi e s o alzhei-
me ’s disease pa ien s. Expe imen al Aging Resea ch, 47(4), 357–372.
h ps://doi.o g/10.1080/0361073X.2021.1895594
Pe ei a, M. G., B i o, L., & Al es, O. (2019). Ques ioná io sociodemog á ico.
P oje o In es igação-Ação nas Demências, G upo de In es igação em
Saúde & Família. Uni e sidade do Minho.
Pe l, M. M., Sookna ine-Rajpa y, A., B ennan, S., Robe son, I. H., & Lawlo ,
B. A. (2019). Ca egi e choice and ca egi e ou comes: A longi udinal
s udy o I ish spousal demen ia ca egi e s. F on ie s in Psychology, 10.
h ps://doi.o g/10.3389/ psyg.2019.01801
Pinqua , M., & Sö ensen, S. (2003). Di e ences be ween ca egi e s and
nonca egi e s in psychological heal h and physical heal h: A me-
8 I. MONTEIRO ETAL.
a-analysis. Psychology and Aging, 18(2), 250–267. h ps://doi.
o g/10.1037/0882-7974.18.2.250
Pope, N., Gige , J., Lee, J., & Ely, G. (2017). P edic ing pe sonal sel -ca e in
in o mal ca egi e s. Social Wo k in Heal h Ca e, 56(9), 822–839. h ps://
doi.o g/10.1080/00981389.2017.1344755
Quinn, C., Nelis, S. M., Ma y , A., Mo is, R. G., Vic o , C., & Cla e, L. (2020).
Ca egi e in luences on ‘li ing well’ o people wi h demen ia: Findings
om he IDEAL s udy. Aging & Men al Heal h, 24(9), 1505–1513. h ps://
doi.o g/10.1080/13607863.2019.1602590
Rasmussen, K. R., S ackhouse, M., Boon, S. D., Coms ock, K., & Ross, R. (2019).
Me a-analy ic connec ions be ween o gi eness and heal h: The mode -
a ing e ec s o o gi eness- ela ed dis inc ions. Psychology & Heal h,
34(5), 515–534. h ps://doi.o g/10.1080/08870446.2018.1545906
Rey, L., & Ex eme a, N. (2016). Fo gi eness and heal h- ela ed quali y o
li e in olde people: Adap i e cogni i e emo ion egula ion s a egies
as media o s. Jou nal o Heal h Psychology, 21(12), 2944–2954. h ps://
doi.o g/10.1177/1359105315589393
Rod íguez-Pé ez, M., Ab eu-Sánchez, A., Rojas-Ocaña, M. J., & del-Pi-
no-Casado, R. (2017). Coping s a egies and quali y o li e in ca egi e s
o dependen elde ly ela i es. Heal h and Quali y o Li e Ou comes,
15(1), 71. h ps://doi.o g/10.1186/s12955-017-0634-8
Roland, K. P., & Chappell, N. L. (2019). Ca egi e expe iences ac oss h ee
neu odegene a i e diseases: Alzheime ’s, pa kinson’s, and pa kinson’s
wi h demen ia. Jou nal o Aging and Heal h, 31(2), 256–279. h ps://doi.
o g/10.1177/0898264317729980
S all, N. M., Kim, S. J., Ha dac e, K. A., Shah, P. S., S aus, S. E., B onskill, S. E.,
Lix, L. M., Bell, C. M., & Rochon, P. A. (2019). Associa ion o in o mal ca e-
gi e dis ess wi h heal h ou comes o communi y-dwelling demen ia
ca e ecipien s: A sys ema ic e iew. Jou nal o he Ame ican Ge ia ics
Socie y, 67(3), 609–617. h ps://doi.o g/10.1111/jgs.15690
S einsheim, G., Saga, S., Olsen, B., B oen, H. K., & Malmedal, W. (2022).
Abusi e episodes among home-dwelling pe sons wi h demen ia and
hei in o mal ca egi e s: A c oss-sec ional No wegian s udy. BMC
Ge ia ics, 22(1), 852. h ps://doi.o g/10.1186/s12877-022-03569-4
S elan, P. (2018). Jus ice and Fo gi eness in In e pe sonal Rela ionships.
Cu en Di ec ions in Psychological Science, 27(1), 20–24. h ps://doi.
o g/10.1177/0963721417734311
Su e , M., Pe in, P. B., Chang, Y.-P., Hoyos, G. R., Bu aye, J. A., & A ango-Lasp illa,
J. C. (2014). Linking amily dynamics and he men al heal h o colombian
demen ia ca egi e s. Ame ican Jou nal o Alzheime ’s Disease and O he
Demen ias, 29(1), 67–75. h ps://doi.o g/10.1177/1533317513505128
Thompson, L. Y. (2003). The ela ionship be ween s ess and pso iasis se e i y:
Fo gi eness as a mode a o . [Doc o al disse a ion, Uni e si y o Kansas].
P oques . h ps://www.p oques .com/open iew/a18072d47854e485c 5
d29ad6c03 9b1/1?cbl=18750&diss=y&pqo igsi e=gschola &pa en Sessi
onId=I 6uo /dBscFFH7aMI6lX7akQNn iWAJxjzBeooU 74%3D
Thompson, L. Y., Snyde , C. R., Ho man, L., Michael, S. T., Rasmussen, H. N.,
Billings, L. S., Heinze, L., Neu eld, J. E., Sho ey, H. S., Robe s, J. C., &
Robe s, D. E. (2005). Disposi ional o gi eness o sel , o he s, and si ua-
ions. Jou nal o Pe sonali y, 73(2), 313–359. h ps://doi.
o g/10.1111/j.1467-6494.2005.00311
Välimäki, T. H., Ma ikainen, J. A., Hongis o, K., Vää äinen, S., Sin onen, H., &
Koi is o, A. M. (2016). Impac o Alzheime ’s disease on he amily ca e-
gi e ’s long- e m quali y o li e: Resul s om an ALSOVA ollow-up
s udy. Quali y o Li e Resea ch, 25(3), 687–697. h ps://doi.o g/10.1007/
s11136-015-1100-x
an den Kieboom, R., Snaphaan, L., Ma k, R., & Bonge s, I. (2020). The ajec-
o y o ca egi e bu den and isk ac o s in demen ia p og ession: A
sys ema ic e iew. Jou nal o Alzheime ’s Disease: JAD, 77(3), 1107–1115.
h ps://doi.o g/10.3233/JAD-200647
Wa e, J. E., Snow, K. K., Kosinski, M., & Gandek, B. (1993). SF-36 heal h su ey
manual and in e p e a ion guide (1s ed.). Bos on: New England Medical
Cen e.
Wo ld Heal h O ganiza ion. (2017). Global ac ion plan on he public heal h
esponse o demen ia: 2017–2025. h ps://apps.who.in /i is/bi s eam/
handle/10665/259615/9789241513487eng.pd ;jsessionid=4DA480FA9
3471AC53988E52B35F416D8?sequence=1
Wo hing on, E. L., J ., & Sche e , M. (2004). Fo gi eness is an emo ion- o-
cused coping s a egy ha can educe heal h isks and p omo e heal h
esilience: Theo y, e iew, and hypo heses. Psychology & Heal h, 19(3),
385–405. h ps://doi.o g/10.1080/0887044042000196674
Ye, Y., Ma, D., Yuan, H., Chen, L., Wang, G., Shi, J., Yu, Y., Guo, Y., & Jiang, X.
(2019). Mode a ing e ec s o o gi eness on ela ionship be ween empa-
hy and heal h- ela ed quali y o li e in hemodialysis pa ien s: A s uc u al
equa ion modeling app oach. Jou nal o Pain and Symp om Managemen ,
57(2), 224–232. h ps://doi.o g/10.1016/j.jpainsymman.2018.10.511
Yu, H., Wang, X., He, R., Liang, R., & Zhou, L. (2015). Measu ing he ca egi e
bu den o ca ing o communi y- esiding people wi h alzheime ’s disease.
PloS One, 10(7), e0132168. h ps://doi.o g/10.1371/jou nal.pone.0132168
Za i , S. H., & Za i , J. M. (1983). The memo y and beha io p oblems checklis
and he bu den in e iew (Technical Repo ). Pennsyl ania S a e
Uni e si y.