scieee Science in your language
[en] (orig)

Relation among Caregivers’ Burden, Abuse and Behavioural Disorder in People with Dementia

Abstract

Dementia produces a loss of independence to carry out the activities of daily life. The great demand for care that these people need usually falls on the family through informal care. This study aims to analyse the burden showed by the informal caregiver of a person with dementia. In addition, we analyse whether this burden present in informal caregivers could be related to abusive behaviour. We also study the relationship between the stage of the disease, the appearance of behavioural disorders and the level of burden in the caregiver using the Scales of Zarit, CASE and FAST. The data showed that 45.50 per cent of caregivers have light burden or burden. After the research, it was identified that the presence of behavioural disorders in patients with dementia showed a correlation with the increase in both the main caregiver burden and abuse. An increase in the level of burden is followed by an increase in the level of abuse (r = 0.844; p = 0.000). Furthermore, we analysed several conditions that could have a correlation with this burden and abuse. It was found that burden in the caregiver could be linked with the presence of behavioural disorders, like aggression (r = 0.577; p = 0.008) and irritability (r = 0.600; p = 0.005) at the moderate stage of the disease. On the other hand, there is a positive correlation between the probability that people with dementia suffer abuse in the moderate stage of the disease and the presence of aggression (r = 0.732; p = 0.000), lack of inhibition (r = 0.571; p = 0.009) and irritability (r = 0.827; p = 0.000). Taking this data into account, burden and abuse seem to be linked to the presence of behavioural disorders in patients with dementia in the moderate stage. Gimeno, I.; Val, S.; Cardoso Moreno, M.J.

Read accessible full text

Relation among Caregivers’ Burden, Abuse and Behavioural Disorder in People with Dementia

Author: Gimeno, I.; Val, S.; Cardoso Moreno, M.J.
Year: 2021
DOI: 10.3390/ijerph18031263
Source: https://zaguan.unizar.es/record/99720/files/texto_completo.pdf
In e na ional Jou nal o
En i onmen al Resea ch
and Public Heal h
A icle
Rela ion among Ca egi e s’ Bu den, Abuse and Beha iou al
Diso de in People wi h Demen ia
Ignacio Gimeno 1, Sonia Val 2and Ma ía Jesús Ca doso Mo eno 1,*


Ci a ion: Gimeno, I.; Val, S.; Ca doso
Mo eno, M.J. Rela ion among
Ca egi e s’ Bu den, Abuse and
Beha iou al Diso de in People wi h
Demen ia. In . J. En i on. Res. Public
Heal h 2021,18, 1263. h ps://
doi.o g/10.3390/ije ph18031263
Academic Edi o s:
Me cedes Guilabe Mo a,
Vi udes Pé ez-Jo e and
I ene Ca illo Mu cia
Recei ed: 29 Decembe 2020
Accep ed: 29 Janua y 2021
Published: 31 Janua y 2021
Publishe ’s No e: MDPI s ays neu al
wi h ega d o ju isdic ional claims in
published maps and ins i u ional a il-
ia ions.
Copy igh : © 2021 by he au ho s.
Licensee MDPI, Basel, Swi ze land.
This a icle is an open access a icle
dis ibu ed unde he e ms and
condi ions o he C ea i e Commons
A ibu ion (CC BY) license (h ps://
c ea i ecommons.o g/licenses/by/
4.0/).
1Depa men o Psychology and Sociology, Facul y o Heal h o Sciences, Uni e si y o Za agoza,
50009 Za agoza, Spain; [email p o ec ed]
2
EINA, Design and Manu ac u ing Enginee ing Depa men , Uni e si y o Za agoza, 50009 Za agoza, Spain;
sonia@uniza .es
*Co espondence: mca mo @uniza .es
Abs ac :
Demen ia p oduces a loss o independence o ca y ou he ac i i ies o daily li e. The g ea
demand o ca e ha hese people need usually alls on he amily h ough in o mal ca e. This s udy
aims o analyse he bu den showed by he in o mal ca egi e o a pe son wi h demen ia. In addi ion,
we analyse whe he his bu den p esen in in o mal ca egi e s could be ela ed o abusi e beha iou .
We also s udy he ela ionship be ween he s age o he disease, he appea ance o beha iou al
diso de s and he le el o bu den in he ca egi e using he Scales o Za i , CASE and FAST. The
da a showed ha 45.50 pe cen o ca egi e s ha e ligh bu den o bu den. A e he esea ch, i was
iden i ied ha he p esence o beha iou al diso de s in pa ien s wi h demen ia showed a co ela ion
wi h he inc ease in bo h he main ca egi e bu den and abuse. An inc ease in he le el o bu den is
ollowed by an inc ease in he le el o abuse ( = 0.844; p= 0.000). Fu he mo e, we analysed se e al
condi ions ha could ha e a co ela ion wi h his bu den and abuse. I was ound ha bu den in
he ca egi e could be linked wi h he p esence o beha iou al diso de s, like agg ession ( = 0.577;
p= 0.008)
and i i abili y ( = 0.600; p= 0.005) a he mode a e s age o he disease. On he o he hand,
he e is a posi i e co ela ion be ween he p obabili y ha people wi h demen ia su e abuse in he
mode a e s age o he disease and he p esence o agg ession ( = 0.732; p= 0.000), lack o inhibi ion
( = 0.571; p= 0.009) and i i abili y ( = 0.827; p= 0.000). Taking his da a in o accoun , bu den and
abuse seem o be linked o he p esence o beha iou al diso de s in pa ien s wi h demen ia in he
mode a e s age.
Keywo ds: demen ia; in o mal ca egi e s; bu den; ca egi e ’s abuse; beha iou al diso de s
1. In oduc ion
The scien i ic and echnological ad ances gene a ed in ecen decades, especially in
de eloped coun ies ha e allowed he ex ension o li e and ha e helped olde people
o ully enjoy he inal s ages o hei li es. The inc ease in li e expec ancy and aging
o he popula ion ine i ably a ou s he appea ance o hose diseases in which age is
a undamen al isk ac o , as is he case wi h demen ia. The numbe o people wi h
demen ia wo ldwide was es ima ed in 2016 a 46.8 million. Howe e , he inc ease in he
elde ly popula ion, especially o people o e 80 yea s old, in which he isk o demen ia is
accen ua ed, added o he absence o an e ec i e ea men and he di icul y o an ea ly
diagnosis, can an icipa e ha his igu e will be doubled e e y 20 yea s, so i is es ima ed
ha will a ec 131.5 million people in 2050. The e o e, demen ia is a eal public heal h
p oblem wo ldwide, wi h a high economic and social cos , being conside ed one o he
epidemics o he 21s cen u y [1,2].
Demen ia is, mo eo e , one o he condi ions ha mos limi s ou abili y o conduc
daily ac i i ies, signi ican ly educing he quali y o li e and au onomy o he pa ien .
Associa ed wi h a p og essi e, global and i e e sible cogni i e de e io a ion, demen ia
causes a loss o memo y and o he highe cogni i e unc ions. I also leads o al e a ions
In . J. En i on. Res. Public Heal h 2021,18, 1263. h ps://doi.o g/10.3390/ije ph18031263 h ps://www.mdpi.com/jou nal/ije ph
In . J. En i on. Res. Public Heal h 2021,18, 1263 2 o 16
in beha iou and pe sonali y wi h impo an epe cussions on he pa ien unc ional
capaci y [3–5].
This disease o en esul s in a si ua ion o comple e physical and psychological de-
pendence and c ea e a need o con inuous supe ision and ca e as i e ol es. Howe e ,
he imbalance be ween he heal h demands gene a ed by he g owing inc ease in cases o
demen ia and he insu icien esou ces a ailable, ha e mean ha he ca e and a en ion
o hese dependen elde ly people has o en allen o he amily, on which he impac is
in ensely nega i e [6–8].
The ies o a ec ion and emo ional closeness wi h he sick pe son mean ha , despi e
he absence o emune a ion and aining o ca e, i is ca ied ou wi h g ea commi -
men and dedica ion by he amily. Howe e , no all membe s o he pa ien ’s amily
o su oundings ake on he esponsibili y o ca ying ou his a duous ask in he same
way [9,10].
The Wo ld Heal h O ganiza ion indica es ce ain cha ac e is ics o he in o mal p i-
ma y ca egi e : usually a pe son close o he pa ien , o en a emale, who ca es o he
pa ien egula ly a home, in di icul condi ions and wi hou emune a ion. The ca egi e
gene ally co e s he basic needs o he pa ien , on many occasions showing a lack o
aining and skills o pe o m hei unc ion [11].
The main ca egi e , he e o e, suppo s he men al, physical and socioeconomic weigh
in he managemen o he sick pe son h oughou he de elopmen o he disease. Thei
ask equi es ime, ene gy and e o , signi ican ly in luencing hei quali y o li e. In
addi ion, hey assume new esponsibili ies o which, gene ally, hey ha e no ecei ed
any aining and which a e, some imes imposed by he amily, o en as a consequence o
he lack o economic esou ces. All his, added o he leng h o ime he disease con inues
o , con ibu es o he c ea ion o a ch onic s ess si ua ion in he ca egi e known as
“bu den” [12–14].
Bu den, he e o e, is he esul o physical-emo ional wo k and social cons ain s
gene a ed by he asks necessa y o he ca e o a sick pe son. I has nega i e epe cussions
on he physical (ca dio ascula and immune) and men al (anxie y, dep ession, ange ,
exhaus ion, a igue, i edness) heal h o he ca egi e [
15
]. How well he ca egi e copes
he si ua ion, hei mo i a ion o ca e, he suppo ne wo ks a ailable, and he ca egi e -
a ec i e ela ionship a e decisi e in he appea ance o bu den [16–18].
On he o he hand, he loss o au onomy, he deg ee o cogni i e de e io a ion o
he pa ien wi h demen ia, hei physical mani es a ions and, especially, hei beha iou al
mani es a ions, also in luence bu den [
19
–
21
]. Howe e , some au ho s such as Van de Lee
e al. [
22
] place mani es a ions o beha iou al diso de s as he aspec o demen ia ha has
he g ea es impac on ca egi e bu den.
The e ec o hese beha iou s is o such magni ude, ha hey cons i u e 50 pe cen
o he p oblems ha a ise in demen ia consul a ions, being one o he aspec s o he
disease ha mos wo ies he amily and ha mos complica es he ca e o hese people
and some imes becoming a eason o ma ginaliza ion, ins i u ionaliza ion and e en ill-
ea men by he ca egi e . The p esence o beha iou al diso de s gene a es high le els o
s ess in he ca egi e and is associa ed wi h he appea ance o physical and psychological
illnesses in 50 pe cen o hem, nega i ely a ec ing bo h he quali y o li e o he ca egi e
and he quali y o li e o he pe son wi h demen ia by educing he quali y o he ca e hey
gi e [23–25].
One o he consequences ha he ask o ca ing o a pe son wi h hese cha ac e is ics
can ha e is he p esence o abuse exe cised by he main ca egi e owa ds he pe son wi h
demen ia. Some s udies show an abuse a e o up o 50 pe cen in hese si ua ions. In his
con ex , he abuse o he elde ly is de ined in The Uni ed Na ions Second Wo ld Assembly
on Ageing [
26
] as “any single o epea ed ac , o lack o app op ia e ac ion ha occu s in
any ela ionship supposedly o us , ha causes damage o dis ess o an elde ly pe son”.
Abuse is conside ed, he e o e, as a ype o iolence in which, om he poin o
iew o he ecological model, i is he esul o he in e ac ion o (1) indi idual ac o s
In . J. En i on. Res. Public Heal h 2021,18, 1263 3 o 16
(impulsi i y, ha ing su e ed abuse, low educa ional le el e c.), (2) ela ional ac o s ( he
way o ela ing o iends, amily, o he couple), (3) ela ing o communi y ac o s (school,
wo kplace and neighbou hood), and (4) social ac o s (cul u al no ms, o social policies ha
main ain socioeconomic inequali ies). Howe e , he p esence o bu den in he ca egi e
and he mani es a ion o beha iou al al e a ions by he pa ien wi h demen ia, added o
he inabili y o many o hese people o epo abuse and lack o social suppo can also be
c i ical [27–29].
The p og essi e and disabling cogni i e impai men associa ed wi h he de elopmen
o demen ia pu s hese pa ien s a isk o expe ience some o se e al o he di e en o ms
o abuse men ioned. In addi ion, some s udies [
30
,
31
] link a g ea e occu ence o abuse o
he con ex o in o mal ca e because o he complexi y o iden i ying and in e ening in
hese abusi e si ua ions. Fi s ly, o he di icul y o he pa ien wi h demen ia o epo he
abuse. Secondly o he social isola ion hey ace and hi dly he denial o he si ua ion ha
may exis by he ca egi e .
Ano he aspec o be conside ed is ha he p esence o beha iou al diso de s in he
pe son wi h demen ia can cause an inc ease in ca egi e
´
s bu den. In u n, we mus
bea in mind ha hese beha iou al diso de s do no mani es hemsel es uni o mly
h oughou he disease [
32
]. As a consequence, we can deduce ha he g ea e he in ensi y
o beha iou al diso de s, he g ea e he o e load on he ca egi e . These easons in
addi ion o he lack o awa eness by heal h p o essionals, place hese non-ins i u ionalized
pa ien s in a si ua ion o special ulne abili y. The e o e, iolence agains people wi h
demen ia in he con ex o in o mal ca e, ep esen s a eal i al isk and a sou ce o su e ing
and anguish o he pa ien and his amily.
Based on he abo e, one o he hypo heses o ou wo k is ha ca egi e s o people
wi h demen ia su e a high deg ee o bu den. In addi ion, i is conside ed ha he g ea e
he deg ee o bu den, he g ea e he p obabili y o mani es ing abusi e beha iou . I mus
also be highligh ed he ac ha he appea ance o beha iou al diso de s could cause a
g ea e bu den on he ca egi e and inc ease he isk o abuse.
In his ega d, he objec i e o his esea ch is o analyse he bu den showed by he
in o mal ca egi e o a pe son wi h demen ia. In addi ion, we in end o e i y whe he
his bu den p esen in in o mal ca egi e s would be ela ed o abusi e beha iou . We also
s udy he ela ionship be ween he s age o he disease, he appea ance o beha iou al
diso de s and he le el o bu den in he ca egi e .
2. Ma e ials and Me hods
2.1. Pa icipan s
The sample o his s udy was composed o 33 in o mal ca egi e s o pa ien s wi h
demen ia esiding in a Spanish ci y. The inclusion c i e ion used o he selec ion o he
pa icipan s in his s udy was ha hey deal wi h people diagnosed wi h demen ia in any
o i s o ms whose ca e was exe cised only by he in o mal ca egi e .
People wi h demen ia who we e ins i u ionalized and hose si ua ions in which he
ca e o he pe son wi h demen ia was pe o med by a p o essional ca egi e we e excluded
om he s udy. Rega ding non ained ca egi e s, hose who, due o he exis ence o
physical, cogni i e o cul u al ba ie s could no co ec ly ca y ou he ques ionnai es
necessa y o he de elopmen o his esea ch, we e excluded.
2.2. Va iables and Ins umen s
2.2.1. Va iables
Two ypes o a iables we e used in he s udy: independen and dependen . The
dependen a iables we e demog aphic da a, pe sonal da a and he phase o demen ia in
which he use is. The independen a iables we e:
•
Bu den wi h h ee le el: non bu den, ligh bu den and bu den. The ins umen chosen
o i s measu emen was Ca egi e Bu den In e iew (ZARIT)
In . J. En i on. Res. Public Heal h 2021,18, 1263 4 o 16
•
Abuse wi h wo le els: non abuse and abuse. The ins umen chosen o i s measu e-
men was Ca egi e Abuse Sc een (CASE).
•
Beha iou al diso de wi h 12 di e en le els acco ding o each beha iou al diso de .
The ins umen chosen o i s measu emen was Beha iou al Diso de s Ques ionnai e.
2.2.2. Ins umen s
Ca egi e Bu den In e iew (ZARIT)
I is he mos widesp ead ques ionnai e o assess he le el o bu den expe ienced by
in o mal ca egi e s o people wi h demen ia and o he diso de s. I was de eloped by
Za i and his collabo a o s in 1980 [
33
] and la e adap ed o he Spanish popula ion by
Ma ín e al. en 1996 [
34
]. I allows use s o ob ain a mul idimensional iew o he men al,
social and physical s a e o he ca egi e , including he dimensions o quali y o li e and
sel -ca e capaci y, social suppo ne wo k and compe encies o ace beha iou al and clinical
p oblems o he pa ien ca e. Al hough he e a e di e en e sions, he one employed in
his s udy [
34
] consis s o 22 ques ions like “Like ” wi h 5 op ions, in which he ca egi e
mus indica e how o en he o she eels s ess, being (0) ne e , (1) wi h a ely, (2) some imes,
(3) o en and (4) almos always. These esul s a e added up o a o al sco e ha can ange
om 0 o 88 poin s. The ques ionnai e has good psychome ic p ope ies and allows hem
o disc imina e be ween di e en le els o bu den, classi ying he si ua ion o he ca egi e
in o: “absence o bu den” i he sco e ob ained is unde 46 poin s, “ligh bu den” i he
sco e is be ween 47 and 55 poin s o “bu den” i he sco e is highe han 55 poin s. The
in e nal consis ency o he scale is 0.91 and ealiabili y es- e es is 0.96 [35,36].
Func ional Assessmen S aging (FAST)
I is a unc ional assessmen classi ica ion scale [
37
] c ea ed by Reisbe g in 1988. which
has been designed o assess changes in unc ional pe o mance and he ac i i ies o he
use ’s daily li e h oughou all s ages o demen ia. These changes a e closely ela ed o
he p og essi e cogni i e decline associa ed wi h he de elopmen p ocess o his disease.
The e alua ion p ocedu e consis s o he desc ip ion o 16 successi e s ages anging om a
si ua ion o unc ional no mali y o he le els o dependence and unc ional impai men
associa ed wi h he mos ad anced phases o he disease and hus ela ing he pa ien
wi h he s age ha bes e lec s he si ua ion o he pa ien s. Func ional cha ac e is ics
desc ibed abo e a e associa ed wi h clinical diagnosis as no mal (s age 1), subjec i e
cogni i e impai men (s age 2), mild cogni i e impai men (s age 3) mild demen ia (s age 4),
mode a e demen ia ( om s age 5 o s age 9) and se e e demen ia ( om s age 11 o s age 16).
The Consis ency o his ins umen is 0.86 and he alidi y is 0.79 [37].
Ca egi e Abuse Sc een (CASE)
I is a alida ed sc eening ool which se es as he i s wa ning o de ec he isk o
abuse, psychosocial abuse o neglec by he ca egi e owa ds he pa ien wi h demen ia. I
was c ea ed by Reis and Nahmiash in 1995 [
38
] and is alida ed in Spain by Ri e a-Na a o
e al. [
39
]. I con ains 8 ques ions wi h dicho omous answe s abou si ua ions ela ed o
iolence as ci ed. A sco e o 4 o mo e poin s on he scale would e lec he exis ence o
abuse. The CASE scale has a mode a e in e nal consis ency (
α
= 0.75) [
39
]. The eliabili y
o his scale is 0.696 [40].
Beha iou al Diso de s Ques ionnai e
This is a ques ionnai e de eloped o his s udy ha aimed o collec in o ma ion
p o ided by ca egi e s abou beha iou al diso de s p esen in pa ien s wi h demen ia.
This ques ionnai e shows 12 di e en beha iou al al e a ions o diso de s ha can
be de ec ed in pa ien s wi h demen ia, along wi h a b ie explana ion o some beha iou
commonly associa ed wi h such al e a ions w i en wi h colloquial wo ds o be e un-
de s anding. The ca egi e should indica e how o en he pa ien exhibi s hese ypes o
beha iou , wi h a sco e anging om ze o o en (being ze o “ne e ” and en “daily”). The
In . J. En i on. Res. Public Heal h 2021,18, 1263 5 o 16
p esence o he symp om and i s mani es a ion was de ined based on he classi ica ion o
he Neu opsychia ic In en o y (NPI) [
41
]. The NPI-Q Spanish e sion showed s ong
es - e es eliabili y o o al symp om scale and o dis ess scale, besides con e gen
alidi y wi h NPI o al symp om ( = 0.879). The di e en beha iou al al e a ions s udied
a e:
1.
Agg ession, such as any physical o e bal beha iou ha may cause physical o
mo al/men al ha m; unjus i ied opposi ion o esis ance; agi a ion; c ies; age; io-
lence; cons an c i icism, e c.
2.
Dep ession, such as cons an sadness; loss o in e es o sa is ac ion in almos all
ac i i ies; eeling like i ’s a bu den; lack o hope; demo i a ion; isola ion, e c.
3.
Anxie y, such as ea o eeling o loss o con ol, exp essed e bally, h ough ges u es
o h ough bodily language; ea ; ne ousness; panic, e c.
4.
Eupho ia, such as abno mally high o inapp op ia e humou o he gi en ime o
si ua ion, wi hou appa en cause; he’s suddenly e y happy o no appa en eason,
e c.
5.
Apa hy, such as lack o in e es ; lack o mo i a ion, eeling, emo ion o conce n; he
inds himsel passi e, he does no hing; e e y hing doesn’ ma e o him/he , e c.
6.
Lack o inhibi ion, such as lack o social ouch in language, body exp ession o o he
beha iou ; ac s impulsi ely, e c.
7.
I i abili y, such as bad mood; unjus i ied apid mood swings; impa ience; in ole ance;
esponds badly o no eason; e e y hing makes him ang y, e c.
8.
Mo o hype ac i i y, such as inc eased wande ing o o he ac i i y ha is no ex-
plained by a cause; a emp s o escape; he pa ien ollows he ca egi e cons an ly;
walks incessan ly, e c.
9.
Repea ed ocaliza ions, such as epea ed annoying sounds o ocal exp essions;
epea s o incessan ly asks o he same hing; says someone’s name cons an ly, e c.
10.
Decay, such as loss o in e es ; dissa is ac ion in almos all ac i i ies; eeling like i ’s a
bu den; lack o mo i a ion; lack o ela ionship wi h o he s; cons an sadness, e c.
11.
Passi i y, such as he pa ien do no wan o pe o m any ac i i y; e e y hing doesn’
ma e o him/he ; lack o mo i a ion; indi e ence, e c.
12.
Anguish, such as eeling o loss o con ol, exp essed e bally, ges u ally o h ough
body mo emen s, e c.
In o de o gi e g ea e alidi y o his ques ionnai e, desc ip ions o simila be-
ha iou s we e used among some diso de s o which we e dep ession and decay, apa hy
and passi i y, and inally anxie y and dis ess. Ob aining simila alues among hese
beha iou al al e a ions e lec s a co ec execu ion and unde s anding o he ques ionnai e
by he ca egi e .
Demog aphic Da a
The Pe sonal Ques ionnai e collec s pe sonal and demog aphic da a ela ed o he
p ima y ca egi e and he pa ien , such as gende , ca egi e -pa ien kinship, age, ime
o disease p og ession, ype o demen ia, and ime he ca egi e has been ac ing as he
p ima y ca egi e .
2.3. P ocedu e
This s udy ob ained a ou able opinion o i s implemen a ion by he Resea ch E hics
Commi ee o A agón (CEICA) wi h E hical app o al code PI18/402, 30 Janua y 2019.
The sea ch o he pa icipan s was made by a p o isional lis p o ided by he Compu e
Se ice o he Lozano Blesa Uni e si y Clinical Hospi al o Za agoza, wi h he ele an
pe mission o he Medical Coo dina ion. We con ac ed by elephone and/o ace o ace
wi h 67 ca egi e s.
The inclusion c i e ia used o he selec ion o he pa icipan s in his s udy a e: hey
we e use s diagnosed wi h demen ia in any o i s o ms, and hei ca e was exe cised
exclusi ely by in o mal ca egi e s.

In . J. En i on. Res. Public Heal h 2021,18, 1263 6 o 16
Following we e conside ed exclusion c i e ia: he use was ins i u ionalized and ca e
was ca ied ou by o mal ca egi e s. The exis ence o physical, cogni i e o cul u al
ba ie s ha p e en he ca egi e om co ec ly comple ing he ques ionnai es was also
conside ed as an exclusion c i e ion.
4 ou o 37 ca egi e s who me he inclusion/exclusion c i e ia decided o no pa ic-
ipa e in he s udy. Finally, he sample o ou s udy was composed o 33 ca egi e s ha
signed he pe mission o pa icipa e in he s udy. The Za i Scale, he Ca egi e Abuse Scale,
and he Beha iou al Diso de s Ques ionnai e we e conduc ed by he p ima y ca egi e a
home o wi h he help o he in e iewe , depending on he abili ies and p e e ences o he
ca egi e . A e ha , we collec ed all he da a. FAST da a we e ob ained om he pa ien
´
s
medical his o y.
2.4. Da a Analysis
All analyses we e ca ied ou using he s a is ical package IBM SPSS 23 (IBM Co p:
A monk, NY, USA). A i hme ic mean, s anda d de ia ion and pe cen ages we e analysed.
Then, we used Kolmogo o -Smi no es whe he he dependen a iables con o med o
a no mal dis ibu ion. As he a iables u ned ou o con o m o a no mal dis ibu ion,
di e en pa ame ic es s we e used (Pea son co ela ion es , -S uden and ANOVAs).
Among he demog aphic and pe sonal da a, he sex and age o bo h he ca egi e and
he pe son wi h demen ia, he kinship o he ca egi e wi h he pa ien , he ype o demen-
ia in he pa ien and he s age o demen ia in which hey a e ound we e eco ded. Also, we
analysed pa ien ’s le el o unc ional impai men , ca egi e bu den, abuse and beha iou al
diso de s. Con inuous ype a iables a e ep esen ed as he mean and s anda d de ia-
ion, while ca ego ical a iables a e ep esen ed as pe cen ages and absolu e equencies.
Pea son’s co ela ion coe icien has been used o analyse he linea dependence be ween
bu den, abuse, beha iou al diso de and s age o disease a iables. Di e ences be ween
he men ioned a iables we e in es iga ed using S uden
´
s - es . S a is ical signi icance
was se a p< 0.05( wo- ailed).
3. Resul s
3.1. Demog aphic Da a
The sample was composed by 33 in o mal ca egi e s o pa ien s wi h demen ia.
Table 1
ep esen s he pe cen ages ela ing o sex and age, bo h o he ca egi e and he
pe son wi h demen ia, he kinship o he ca egi e wi h he pa ien , he ype o demen ia
ha he s age o demen ia.
Table 1. Demog aphic da a o s udy sample (n= 33).
DEMOGRAPHIC DATA % (n)
Sex ca egi e
Men 45.50 (15)
Women 54.50 (18)
Sex pa ien
Men 30.30 (10)
Women 69.70 (23)
Kinship wi h he pa ien
Couple 52 (17)
Siblings 3 (1)
Nephew/Niece 3 (1)
O sp ing 39 (13)
G andchild 3 (1)
In . J. En i on. Res. Public Heal h 2021,18, 1263 7 o 16
Table 1. Con .
DEMOGRAPHIC DATA % (n)
Type o demen ia
Alzheime D. 37 (12)
Mixed D. 9 (3)
Vascula D. 18 (6)
Senile D. 24 (8)
Pa kinson D. 12 (4)
S age o demen ia
Mild 21.20 (7)
Mode a e 60.60 (20)
Se e e 18.20 (6)
Alzheime D.: Alzheime Demen ia; Mixed D.: Mixed Demen ia; Vascula D.: Vascula Demen ia; Senile D.: Senile
Demen ia; Pa kinson D.: Pa kinson Demen ia.
3.2. Ca egi e Bu den Analysis
Following he analysis o he da a ob ained in he Za i ques ionnai e, i is obse ed
ha 45.50 pe cen o ca egi e s ha e ligh bu den o bu den (Table 2).
Table 2. Ca egi e Bu den (n= 33).
Bu den Le el % (n)
Non-Bu den 54.5 (18)
Ligh Bu den 27.3 (9)
Bu den 18.2 (6)
When we analyzed ca egi e bu den based on gende , we ound ha women p e-
sen ed highe le els o bu den han men ( = 2.31; p= 0.027) (Table 3).
Table 3. Ca egi e Bu den and Gende (n= 33).
Ca egi e Bu den % (n)
Men (n= 15) Women (n= 18)
Non-Bu den 80 (12) 50 (9)
Ligh Bu den 13.3 (2) 22.2 (4)
Bu den 6.7 (1) 27.8 (5)
3.3. Ca egi e Abuse Sc een (CASE)
When da a ob ained om he Ca egi e Abuse Sc een a e analyzed, we ound ha in
mo e han hal o he cases, ca egi e s p esen ed beha iou s ela ed o abuse. (Table 4). No
signi ican di e ences in abuse we e ound acco ding o sex ( = 0.790; p= 0.430).
Table 4. Ca egi e Abuse Sc een (n= 33).
Abuse % (n)
Non-Abuse 48.50 (16)
Abuse 51.50 (17)
3.4. Beha iou al Diso de s
The ollowing able shows he in ensi y wi h which beha iou al diso de s appea ed
in people wi h demen ia (Table 5).
In . J. En i on. Res. Public Heal h 2021,18, 1263 8 o 16
Table 5. Beha iou al Diso de s.
Beha iou al Diso de s Mean SD
Agg ession 3.121 3.638
Dep ession 4.242 4.000
Anxie y 3.515 3.930
Eupho ia 2.121 3.039
Apa hy 5.515 3.726
Lack o inhibi ion 2.090 3.136
I i abili y 3.969 3.704
Mo o hype ac i i y 2.485 3.692
Decay 3.909 3.964
Anguish 4.424 3.992
Passi i y 5.212 3.855
Repea ed ocaliza ions 3.394 4.085
As i can be seen, apa hy and dep ession a e he diso de s ha appea mos equen ly.
3.5. Bu den and Abuse
Ano he o he objec i es se ou in his s udy was o ind ou i he ca egi e ’s bu den
migh be ela ed o abuse. The Pea son co ela ion es we e done be ween he p esence o
bu den in he ca egi e and abuse owa ds he people wi h demen ia. The esul s ob ained
e lec he exis ence o a s ong posi i e co ela ion be ween hese a iables
( = 0.844
;
p= 0.000
) indica ing ha a highe le el o bu den co ela ed wi h abuse by ca egi e
(Table 6).
Table 6. Rela ion be ween bu den in ca egi e and abuse (n= 33).
Abuse % (n) Non Abuse % (n)
Pa ien 51.50 (17) 48.5 (16)
Bu den Non-Bu den 29.40 (5) 81.25 (13)
Ligh Bu den 35.30 (6) 18.75 (3)
Bu den 35.30 (6) 00.0 (0)
3.6. Bu den and Beha iou al Diso de s
A signi ican posi i e ela ionship has been ob ained be ween bu den and he p esence
o beha iou al al e a ions o agg ession, dep ession, anxie y, eupho ia, apa hy, lack o
inhibi ion, i i abili y, mo o hype ac i i y, decay and dis ess. Howe e , he e is no
signi ican co ela ion be ween bu den and pa ien beha iou s o passi i y and epea ed
ocaliza ions. This ells us ha he p esence o beha iou al diso de s in he pe son wi h
demen ia has inc eased he bu den o he ca egi e , excluding ac s o passi i y and epea ed
ocaliza ions (Table 7).
Table 7. Co ela ions be ween Bu den and Beha iou al Diso de .
Beha iou al Diso de s Pea son Co ela ion Coe icien ( ) p
Agg ession 0.669 0.000
Dep ession 0.395 0.023
Anxie y 0.404 0.020
Eupho ia 0.346 0.048
Apa hy 0.219 0.022
Lack o inhibi ion 0.470 0.006
I i abili y 0.624 0.000
Mo o hype ac i i y 0.377 0.030
Decay 0.363 0.038
Anguish 0.394 0.023
Passi i y 0.147 0.413 (NS)
Repea ed ocaliza ions 0.152 0.399 (NS)
NS: non-signi ican . p: p obabili y.
In . J. En i on. Res. Public Heal h 2021,18, 1263 9 o 16
3.7. Bu den and S age o he Disease
The s udy da a indica e ha he le el o bu den in he ca egi e would also be ela ed
o he s age o he disease in which he pa ien is loca ed (F = 15.70; p= 0.000). As shown in
Table 8, he highes le el o bu den appea s in he mode a e s age o he disease.
Table 8. Bu den and s age o he disease (n= 33).
S age o he Disease %(n)
U den (n) Mild Mode a e Se e e
Non-Bu den 71,4 (5) 40 (8) 83,3 (5)
Ligh Bu den 14,3 (1) 35 (7) 16,7 (1)
Bu den 14,3 (1) B25 (5) 0 (0)
3.8. Bu den, Beha iou al Diso de s and S age o Disease
Analyzed da a may indica e ha he beha iou al diso de s ha could gene a e he
g ea es o e load on he ca egi e may a y h oughou he di e en phases o he disease
(Table 9). In he mild s age, agg ession, decay and dep ession beha io s could co ela e
wi h g ea e bu den on he ca egi e while in an in e media e phase o he disease he
beha io s ha migh co ela e wi h g ea e o e load a e agg ession and i i abili y. In
he se e e s age, i i abili y seems o be he beha iou ha migh co ela es wi h g ea e
bu den on he ca egi e .
Table 9. Co ela ions be ween Bu den, Beha iou al Diso de s and s age o disease.
S age o he Disease Beha iou al Diso de s p
Mild
Agg ession 0.755 0.050
Dep ession 0.840 0.018
Decay 0.827 0.022
Mode a e Agg ession 0.577 0.008
I i abili y 0.600 0.005
Se e e I i abili y 0.851 0.032
: Pea son co ela ion coe icien .
3.9. Abuse and Beha iou al Diso de
Analyzed da a may indica e ha abusi e beha io s could be associa ed wi h he
p esence o conduc diso de s su e ed by people wi h demen ia (F = 9.35; p= 0.000). The
beha io al diso de s ha mos ly gene a e abuse seems o bee agg ession, eupho ia, lack o
inhibi ion, i i abili y and mo o hype ac i i y (Table 10).
Table 10. Co ela ions be ween Abuse and beha iou al diso de s.
Beha iou al Diso de s p
Agg ession 0.824 0.000
Dep ession 0.420 0.015
Anxie y 0.349 0.046
Eupho ia 0.527 0.002
Apa hy 0.223 0.212 (NS)
Lack o inhibi ion 0.657 0.000
I i abili y 0.845 0.000
Mo o hype ac i i y 0.485 0.004
Decay 0.426 0.013
Anguish 0.384 0.027
Passi i y 0.226 0.206 (NS)
Repea ed ocaliza ions 0.230 0.198 (NS)
: Pea son co ela ion coe icien NS: non-signi ican .
In . J. En i on. Res. Public Heal h 2021,18, 1263 16 o 16
48.
Hende son, D.; Buchanan, J.; Fishe , J.E. Violence and he elde ly popula ion: Issues o p e en ion. In P e en ing Violence in
Rela ionships: In e en ions ac oss he Li e Span; Schewe, P.A., Ed.; Ame ican Psychological Associa ion: Washing on, DC, USA,
2002; pp. 223–245.
49.
Wigleswo h, A.; Mosqueda, L.; Mulna d, R.; Liao, S.; Gibbs, L.; Fi zge ald, W. Sc eening o abuse and neglec o people wi h
demen ia. J. Am. Ge ia . Soc. 2010,58, 493–500. [C ossRe ]
50.
Se a, L.; Con ado , I.; Fe nández-Cal o, B.; Ruiso o, P.; Jena o, C.; Flo es, N.; Ramos, F.; Ri e a-Na a o, J. Resilience and social
suppo as p o ec i e ac o s agains abuse o pa ien s wi h demen ia: A s udy on amily ca egi e s. In . J. Ge ia . Psychia y
2018
,
33, 1132–1138. [C ossRe ]
51.
G aham, C.; Balla d, C.; Sham, P. Ca e s’ knowledge o demen ia, hei coping s a egies and mo bidi y. In . J. Ge ia . Psychia y
1997,12, 931–936. [C ossRe ]
52. B oda y, H. Ca egi e s and beha io al dis u bances: E ec s and in e en ions. In . Psychoge ia . 1996,8, 455–458. [C ossRe ]
53.
Kim, S.; Pa k, M.; Lee, Y.; Choi, S.; Moon, S.; Seo, S.; Moon, Y. In luence o pe sonali y on dep ession, bu den, and heal h- ela ed
quali y o li e in amily ca egi e s o pe sons wi h demen ia. In . Psychoge ia . 2017,29, 227–237. [C ossRe ]
54.
To isi, M.; De Cola, M.; Ma a, A.; De Luca, R.; B aman i, P.; Calab o, R.S. Neu opsychia ic symp oms in demen ia may p edic
ca egi e bu den: A Sicilian explo a o y s udy. Psychoge ia ics 2017,17, 103–107. [C ossRe ]
55.
Hessle , J.B.; Schäu ele, M.; Hendlmeie , I.; Junge, M.N.; Leonha d , S.; Webe , J.; Bickel, H. Beha iou al and psychological
symp oms in gene al hospi al pa ien s wi h demen ia, dis ess o nu sing s a and complica ions in ca e: Resul s o he Gene al
Hospi al S udy. Epidemiol. Psychia . Sci. 2017,27, 278–287. [C ossRe ] [PubMed]
56.
Black, C.M.; Ri chie, C.W.; Khandke , R.K.; Wood, R.; Jones, E.; Hu, X.; Ambegaonka , B.M. Non-p o essional Ca egi e Bu den is
Associa ed wi h he Se e i y o Pa ien s’ Cogni i e Impai men . PLoS ONE 2018,13, e0204110. [C ossRe ] [PubMed]
57.
Mohamed, S.; Rosenheck, R.; Lyke sos, C.G.; Schneide , L.S. Ca egi e Bu den in Alzheime Disease: C oss-Sec ional and
Longi udinal Pa ien Co ela es. Am. J. Ge ia . Psychia y 2010,18, 917–927. [C ossRe ] [PubMed]
58. Te i, L.; McCu y, S.M.; Logsdon, R.; Gibbons, L.E. T aining communi y consul an s o help amily membe s imp o e demen ia
ca e: A andomized con olled ial. Ge on ologis 2005,45, 802–811. [C ossRe ]
59.
Gi ens, J.L.; Mezzacappa, C.; Hee en, T.; Ya e, K.; F edman, L. Dep essi e Symp oms among Demen ia Ca egi e s: Role o
Media ing Fac o s. Am. J. Ge ia . Psychia y 2014,22, 481–488. [C ossRe ]
60. Onyike, C.U. Psychia ic Aspec s o Demen ia. Con inuum 2016,22, 600–614. [C ossRe ]
61.
S a ks ein, S.E.; Maybe g, H.S.; P eziosi, T.J.; And ezejewski, P.; Leigua da, R.; Robinson, R. Reliabili y, alidi y, and clinical
co ela es o apa hy in Pa kinson’s Disease. J. Neu opsychia y Clin. Neu osci. 1992,4, 134–139.
62.
De anand, D.P.; Sano, M.; Tang, M.X.; Taylo , S.; Gu land, B.J.; Wilde , D.; S e n, Y.; Mayeux, R. Dep essed mood and he
incidence o Alzheime ’s disease in he elde ly li ing in he communi y. A ch. Gen. Psychia y. 1996,53, 175–182. [C ossRe ]
63. K a z, T. The Diagnosis and T ea men o Beha io al Diso de s in Demen ia. D sch. A z ebl. In . 2016,114, 447–454. [C ossRe ]
64.
Maje , R.; Simon, V.; Csiba, L.; Ka dos, L.; F ecska, E.; Ho obágyi, T. Beha iou al and Psychological Symp oms in Neu ocogni i e
Diso de s: Speci ic Pa e ns in Demen ia Sub ypes. Open Med. 2019,14, 307–316. [C ossRe ]
65.
Yan, E. Abuse o olde pe sons wi h demen ia by amily ca egi e s: Resul s o a 6-mon h p ospec i e s udy in Hong Kong. In . J.
Ge ia . Psychia y 2014,29, 1018–1027. [C ossRe ] [PubMed]
66.
Khoo, S.A.; Chen, T.Y.; Ang, Y.H.; Yap, P. The impac o neu opsychia ic symp oms on ca egi e dis ess and quali y o li e in
pe sons wi h demen ia in an Asian e ia y hospi al memo y clinic. In . Psychoge ia .
2013
,25, 1991–1999. [C ossRe ] [PubMed]