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Satisfaction in dementia and stroke caregivers: a comparative study

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Informal caregiving to the elderly is associated with the presence of both difficulties and positive rewards, but the latter have been considered less systematically in gerontological literature. In this cross-sectional study, we compared
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  See discussions, stats, and author profiles for this publication at: https://www.researchgate.net/publication/40454155 Satisfaction in dementia and stroke caregivers:A comparative study   Article   in  Revista Latino-Americana de Enfermagem · September 2009 DOI: 10.1590/S0104-11692009000500004 · Source: PubMed CITATIONS 12 READS 17 3 authors , including: Some of the authors of this publication are also working on these related projects: PT100 - Oporto Centenarian Study   View projectOscar RibeiroUniversity of Porto 59   PUBLICATIONS   187   CITATIONS   SEE PROFILE All content following this page was uploaded by Oscar Ribeiro on 07 September 2015. The user has requested enhancement of the downloaded file. All in-text references underlined in blue are added to the srcinal documentand are linked to publications on ResearchGate, letting you access and read them immediately.  620 SATISFACTION IN DEMENTIA AND STROKE CAREGIVERS: A COMPARATIVE STUDY Margarida Sotto Mayor  1 Oscar Ribeiro  2  Constança Paúl  3  Mayor MS, Ribeiro O, Paúl C. Satisfaction in dementia and stroke caregivers: a comparative study. Rev Latino-am Enfermagem 2009 setembro-outubro; 17(5):620-4. Informal caregiving to the elderly is associated with the presence of both difficulties and positive rewards, but the latter have been considered less systematically in gerontological literature. In this cross-sectional study,we compared satisfaction of caregivers of demented (n=70) and stroke patients (n=44) by means of the Carer’s Assessment of Satisfaction Index (CASI) and also compared their depression levels. Findings revealed the presence of satisfaction deriving from intrapersonal dynamics (elderly as main beneficiary) and from interpersonal dynamics (caregiver as main beneficiary) in dementia situations, and the presence of satisfaction deriving from intrapersonal dynamics (caregiver as main beneficiary) in stroke situations. Both subgroups of caregivers revealed similar yet significant levels of depression. The need for a better understanding of satisfaction experiences in dementia and stroke caregivers is highlighted.DESCRIPTORS: personal satisfaction; caregivers; aged; Alzheimer disease; stroke  PERCEPCIÓN DE LA SATISFACCIÓN DE CUIDADORES DE PERSONAS CON DEMENCIA YDE CUIDADORES DE PERSONAS CON AVC La prestación informal de cuidados a las personas ancianas está vinculada a la presencia de dificultades y de satisfacciones. Generalmente la literatura gerontológica enfoca los aspectos de la dificultad, sin embargo no le ha dado la misma atención al análisis de la experiencia de la satisfacción. El propósito de este estudio transversal fue comparar la experiencia de satisfacción y de sintomatología depresiva de cuidadores de ancianos con demencia (n=70) y de cuidadores de ancianos con antecedentes de, por lo menos, un AVC (n=44), a través del Índice de Evaluación de la Satisfacción del Cuidador (CASI). Los resultados indican la presencia de sintomatología depresiva en ambos grupos; satisfacción intrapersonal (centrada en el anciano) y interpersonal (centrada en el cuidador) para los cuidadores de ancianos con demencia y, satisfacción intrapersonal (centrada en el cuidador)para los cuidadores de personas con antecedentes de AVC. Se destaca la necesidad de comprender mejor las experiencias de satisfacción en los cuidadores de ancianos con demencia y AVC.DESCRIPTORES: satisfacción personal; cuidadores; anciano; enfermedad de Alzheimer; Accidente Cerebrovascular  ESTUDO COMPARATIVO: PERCEPÇÃO DA SATISFAÇÃO DE CUIDADORES DE PESSOASCOM DEMÊNCIA E CUIDADORES DE PESSOAS COM AVC A prestação informal de cuidados a pessoas idosas é vinculada à presença de dificuldades e de satisfação.Enquanto a literatura gerontológica enfoca os aspectos da dificuldade também tem negligenciado a análise da experiência de satisfação. O propósito deste estudo transversal foi comparar a experiência de satisfação e de sintomatologia depressiva de cuidadores de idosos demenciados (n=70) e de cuidadores de idosos com antecedentes de pelo menos um AVC (=44), através do Índice de Avaliação da Satisfação do Cuidador (CASI).Os resultados indicam a presença de sintomatologia depressiva para ambos os grupos, satisfação intrapessoal (centrada no idoso) e interpessoal (centrada no cuidador) para os cuidadores de demenciados e satisfação intrapessoal (centrada no cuidador) para os cuidadores de pessoas com antecedentes de AVC. Destaca-se a necessidade de compreender melhor as experiências de satisfação em cuidadores de idosos com demência e AVC.DESCRITORES: satisfação pessoal; cuidadores; idoso; doença de Alzheimer; acidente cerebral vascular  1 RN, Doctoral Student in Biomedical Sciences, Instituto de Ciências Biomédicas Abel Salazar, Universidade do Porto, Portugal, member, Centro UniversitárioAssunção UNIFAI, Portugal, e-mail: mgsottomayor@gmail.com; 2 Psychologist, Ph.D. in Biomedical Sciences, member, Centro Universitário Assunção UNIFAI,Portugal, e-mail: oscar-soares-ribeiro@sapo.pt; 3 Ph.D. in Gerontology, Director, Centro Universitário Assunção UNIFAI, Portugal, Full Professor, Instituto deCiências Biomédicas Abel Salazar, Universidade do Porto, Portugal, e-mail: constancapaul@netcabo.pt. Disponible en castellano/Disponível em língua portuguesaSciELO Brasil www.scielo.br/rlae Artigo Original  Rev Latino-am Enfermagem 2009 setembro-outubro; 17(5):620-4www.eerp.usp.br/rlae  621 BACKGROUND A lzheimer’s disease and stroke are two ofthe most common sources of disability in westernsociety that lead to the need for family caregiving;the first one, considered the “century’s disease” (1) ,constitutes a chronic progressive disorder that leadsto the most common irreversible dementia amongolder persons (2) ; the second one is an important causeof death and figures among the leading causes ofdisability around the world (3) . Both conditions comprisea well-known burden and stress for the caregivers (4-5) , but few reports have compared those twocaregiving situations in what regards the presence ofpositive rewards and gratifications, such as feelingmore useful, feeling needed, feeling good about theself, finding meaning in life or learning new skills.As the complexities and dynamic nature ofcaregiving underscore the critical importance ofreflecting on both the negative and the positive aspectsof the role, and considering that relatively littleattention has been paid to satisfaction in caregivingresearch (6) , the aim of the present study is to comparemeasures of satisfaction and depression in elderlyco-resident caregivers of stroke and dementiapatients. To define “satisfaction with caring”, weconsidered a theoretical framework (7)  that includesthree different dimensions: (i) satisfaction derivingfrom interpersonal dynamics between caregiver andcare receiver; (ii) satisfaction deriving from theintrapersonal or intrapsychic orientation of thecaregiver and care receiver (intrapersonal dynamics)and; (iii) satisfaction deriving from a desire to promotea positive or avoid a negative outcome in the carereceiver (a result of some action). We have alsoconsidered these authors’ distinction between whomainly benefits from the satisfaction felt - thecaregiver or the care receiver (2,7) . METHODS SampleThe sample comprises two distinct subgroups:70 caregivers of patients diagnosed with Alzheimer’sdisease and 44 caregivers of persons who were strokesurvivors (either from hemorrhagic or ischemiccerebral vascular accidents). Dementia patients wererecruited from a public Psychogeriatric Service in aPsychiatric Hospital and their caregivers wereinterviewed at the hospital or at their homes. Strokepatients were recruited from a rehabilitation serviceat a private hospital and interviews were held at theirhomes. The Ethics Committee of both institutions gaveapproval for the study.Table 1 presents the main demographic andbackground characteristics of each subgroup ofcaregivers, as well as the specific contexts of caredelivery. Significant differences were found betweenthe subgroups in terms of gender (substantially morewomen in dementia situations), work status (caregiversmore likely to be employed in stroke situations) andsome dimensions of the context of care (revealingdementia caregivers as the subgroup more likely toprovide help on a continuous 24h basis, for a longerperiod of time and with no secondary help).Table 1 – Caregiver characteristics and contexts ofcare by subgroup elbairaV aitnemeD snoitautis 07=N ekortS snoitautis 44=N psrevigeraC )%(nredneG elaM )07.51(11 )09.04(81 500.0 elameF )03.48(95 )01.95(62 )DS(naem,egA )71.41(58,95 )44.01(54,16 leveLlanoitacudE  1 )%(n, sraey4< )04.12(51 )03.72(21 883.0 sraey4 )01.74(33 )01.43(51 sraey4> )04.13(22 )06.83(71 )%(n,sutatSkroW deyolpmE )24.13(22 )36.36(82 100.0< deyolpmenu / deriteR )75.86(84 )63.63(61 )%(n,reviecererachtiwpihsnoitaleR esuopS )24.14(92 )27.22(01 260.0 nerdlihC )58.24(03 )09.04(81 srehtO )37.51(11 )83.63(61 eracfotxetnoC )%(n,dedivorpplehfoycneuqerF modleS )08.5(4 )06.83(71 100.0< semitemoS )05.41(01 )08.13(41 netfO )07.12(51 )06.31(6 syawlA )00.85(04 )09.51(7 )%(n,gnivigeracnotnepsemiT tcatnocralugerrI )24.13(22 )09.51(7 910.0 yad-flaH )41.72(91 )72.25(32 yad / sruoh42 )24.14(92 )18.13(41 )%(n,gnivigeracfonoitaruD shtnom6< )41.7(5 )36.83(71 100.0< shtnom21<shtnom6 )00.01(7 )81.34(91 shtnom21> )58.28(85 )81.81(8 )%(n,srevigeracyradnoceS tnetsixenI )41.72(91 )00.0(0 100.0< plehlanoisseforP )75.82(02 )45.45(42 ylimaF )82.44(13 )54.54(02 diacitsemoD oN )09.28(85 )27.74(12 100.0< seY )01.71(21 )72.25(32 1. Number of years of full-time education.Satisfaction in dementia and stroke caregivers… Mayor MS, Ribeiro O, Paúl C. Rev Latino-am Enfermagem 2009 setembro-outubro; 17(5):620-4www.eerp.usp.br/rlae  622 In both subgroups, care receivers weremostly female (58.6% in dementia situations and66% in stroke situations) and very old (mean ageof 78.87, SD=6.9 in dementia situations and 76.04,SD=9.47 in stroke situations). Dependency levelswere significantly higher in the demented carereceivers.Data Collection and InstrumentsAfter informed consent to participate in thestudy was obtained from the caregivers,confidentiality was promised and voluntaries wereassured, several instruments were used to assessdifferent aspects of the caregiver’s experience.Information comprising demographic andbackground/contextual variables were obtainedthrough a brief informative questionnaire. Thecaregiver’s sense of satisfaction was examined bythe Carer’s Assessment of Satisfaction Index(CASI) (8) , an instrument that evaluates the caregiver’ssubjective experience of satisfaction and the extentof satisfaction that is associated to each of thesefactors. It involves 30 different items associated withthe person being cared for (10 items), with thecaregiver (12 items), or related to interpersonaldynamics (8 items); when completing the scale, thesubjects are asked to indicate whether each itemapplies providing a great deal of satisfaction (4),applies and provides quite a lot of satisfaction (3),applies but does not provide a source of satisfaction(2), or does not apply to them (1). Caregiver’sdepression was measured using the Portugueseversion of the Centre for Epidemiologic StudiesDepression Scale (CES-D) (9) , adopting scores of 20or higher to indicate depression for descriptivepurposes. Finally, the patient’s disability anddependency were assessed by Lawton’s- Index ofInstrumental Activities of Daily Living (10) .Data AnalysisStatistical analysis was carried out usingSPSS for windows, version 14.0. Comparisonsbetween groups were performed using Mann-Whitneyand Kruskal-Wallis tests, as well as Spearman’scoefficients, Chi-square analysis and Fisher’s exacttest for 2 groups. Package r–part of R Program, version2.4.1 was used for decision tree analysis. Level ofsignificance was set at .05. RESULTS As we can see in Table 2, satisfaction withcaregiving was found in both subgroups of caregivers,with some significant differences with regard to itssource (dynamics) and to the perceived beneficiaryof care: in intrapersonal dynamics, stroke caregiverspresented higher satisfaction when the caregiver wasthe main beneficiary of care (20.3; SD=4.2) anddementia caregivers presented higher satisfactionlevels when the care receiver was the main beneficiary(6.9, SD=1.3); in interpersonal dynamics, when thecaregiver was considered the main beneficiary,dementia caregivers revealed higher satisfaction (7.7,SD=2.5) than stroke caregivers (7.0, SD=2.4). Whenusing the CASI subscales as outcomes in a non-conditional logistic regression model, the adjustedodds ratios showed significant differences betweenthe groups, mainly evidencing principally that strokecaregivers are more likely to derive satisfaction fromintrapersonal dynamics with the caregiver as the mainbeneficiary of care than dementia caregivers (OR 0.7,95% CI 0.6-0.9).Table 2 - Caregiver’s Satisfaction: Dementia vs. Stroke ¹ Model calculated through non conditional logistic regression and adjusted for all CASI dimensions*<0.05; **<0.01Rev Latino-am Enfermagem 2009 setembro-outubro; 17(5):620-4www.eerp.usp.br/rlaeSatisfaction in dementia and stroke caregivers… Mayor MS, Ribeiro O, Paúl C. selacs-busISAC aitnemeD ekortS  sddodetsujdA oitar )DS(naeM )DS(naeM )IC%59(  1 yraicifenebniamsarevigerac-scimanydlanosrepretnimorfdevirednoitcafsitaS )5.2(7.7  * )4.2(0.7 )8.1-0.1(4.1  * yraicifenebniamsarofderacnosrep-scimanydlanosrepretnimorfgnivirednoitcafsitaS )6.1(4.01 )3.1(5.01 )4.1-6.0(9.0 tifeneblautum-scimanydlanosrepretnimorfgnivirednoitcafsitaS )7.2(9.7 )3.2(1.8 )2.1-6.0(8.0 yraicifenebniamsarevigerac-scimanydlanosrepartnimorfgnivirednoitcafsitaS )2.6(2.71 )2.4(3.02  ** )9.0-6.0(7.0  ** yraicifenebniamsarofderacnosrep-scimanydlanosrepartnimorfgnivirednoitcafsitaS )3.1(9.6  * )2.1(5.6 )3.2-0.1(5.1  * tifeneblautum-scimanydlanosrepartnimorfgnivirednoitcafsitaS )6.3(7.41 )5.3(3.51 )2.1-8.0(0.1 yraicifenebniamsarevigerac-scimanydemoctuomorfgnivirednoitcafsitaS )0.2(4.4 )7.1(1.5 )2.1-6.0(9.0 yraicifenebniamsarofderacnosrep-scimanydemoctuomorfgnivirednoitcafsitaS )7.3(3.51 )0.3(2.51 )3.1-9.0(1.1  623 As to the presence of depression, thoughglobal scores of CES-D revealed to be very similar inboth subgroups (indicating the presence of symptomsat clinical level), when considering the four-factorstructure of the scale (11) , several significant differenceswere found in “depressive affect”, “positive affect”and “interpersonal factors” (see Table 3). When usingCES-D factors as outcomes in a non-conditional logisticregression model, the adjusted odds ratiosdemonstrated that the “positive affect” factor (whichincludes feeling hopeful about the future, feeling happyor enjoying life) significantly distinguishes strokecaregivers from dementia caregivers (OR 1.3, 95%CI 1.0-1.7) and that “interpersonal” factors (feelingthat the other dislikes me or sees me as unfriendly)distinguishes the subgroups in a more significant way,with stroke caregivers presenting more of thesedepressive symptoms (OR 0.3, 95% CI 0.1-0.4).Table 3 - Caregiver’s Depressive Symptoms:Dementia vs. Stroke ¹ Model calculated through non conditional logistic regression and adjustedfor all CES-D factors*<0.05; **<0.01; ***<0.001 In general, when considering the results ofCASI and CES-D, the main differences between thesubgroups can be synthesized as follows (see Table 4):Table 4 - Caregivers of stroke patients and dementedpatients: main distinctive features stneitapekortsfosrevigeraC stneitapdetnemedfosrevigeraC +morfdevirednoitcafsitaS -scimanydlanosrepretni yraicifenebniamsarevigerac )ISAC( +morfgnivirednoitcafsitaS -scimanydlanosrepartni yraicifenebniamsarevigerac )ISAC( +morfdevirednoitcafsitaS -scimanydlanosrepartni niamsarofderacnosrep )ISAC(yraicifeneb + -smotpmysevisserpeD )D-SEC(rotcaflanosrepretni + -smotpmysevisserpeD )D-SEC(rotcaftceffaevitisop DISCUSSION AND CONCLUSION Caring for another person can be experiencedas stressful and burdening but it can also be animportant source of positive rewards. One main findingof this study was that a high proportion of caregiversexpressed satisfaction, irrespective of the distinctionmade between the caregiver and the person caredfor as the perceived beneficiary of care, andirrespective of the privileged dynamic source ofsatisfaction (either intrapersonal, interpersonal oroutcomes). Another relevant finding was that bothsubgroups reported that satisfaction is co-existent withdepressive symptoms, which were found at a verysimilar level in both situations.However, when looking at the subgroups wehave considered, two major differences wereidentified: the first is that, although they bothpresented sources of satisfaction, suggesting altruisticconcern with the welfare of the person cared for(intrapersonal dynamics), dementia caregivers morelikely interpreted their satisfaction in the light of thecare-receiver’s well being, while stroke caregiversrooted their source of satisfaction mostly in theaccomplishment of their own efforts, such as fulfillinga sense of duty or showing personal skills (caregiveras main beneficiary of care); secondly, we concludedthat dementia caregivers were more likely to derivesatisfaction from interpersonal dynamics, especiallyfrom receiving appreciation for their efforts (caregiveras the main beneficiary). A potential explanation forthese results may rely on the fact that specializedservices for Alzheimer’s disease patients are notwidely available in Portugal (12) , which restricts theavailability of service options and their quality. In thiscontext, the caregiver’s efforts to maintain the carereceiver’s dignity and keep him/her out of aninstitution can be highlighted as an important sourceof satisfaction, along with the social recognition ofthe caregiver’s invaluable associated efforts.Furthermore, in contrast with caregivers of patientswith stroke, who abruptly have to cope with a situationof dependency they are not prepared for and mayhighlight the development of new skills and abilitieswhen identifying sources of satisfaction in the role,dementia caregivers may be less aware of suchefforts, attributing greater value to interpersonaldynamics. Some of these results have been partiallypresented in recent studies on older malecaregivers (13)  but need further investigation. Satisfaction in dementia and stroke caregivers… Mayor MS, Ribeiro O, Paúl C. Rev Latino-am Enfermagem 2009 setembro-outubro; 17(5):620-4www.eerp.usp.br/rlae srotcafD-SEC aitnemeD ekortS ROdetsujdA )DS(naeM )DS(naeM IC%59  1 tceffAevisserpeD *)8.4(8.8 )3.2(5.7 )2.1-9.0(1.1 tceffAevitisoP *)7.2(2.5 )7.1(3.4 *)7.1-0.1(3.1 dedraterdnacitamoS ytivitca  )2.4(0.7 )2.2(5.6 )3.1-9.0(1.1 lanosrepretnI )3.1(8.0 ***)3.1(5.2 )4.0-1.0(3.0 *** erocslatoT )9.01(9.12 )9.3(9.02
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