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Factors associated with the quality of life of elderly caregivers of other elderly persons

Abstract

Objective

: To evaluate the association between the double vulnerability of being elderly and a caregiver and quality of life assessed by Control, Autonomy, Self-realization and Pleasure factors (CASP-19).

Method

: 148 elderly caregivers participated in the present study. They were selected for convenience from Brazilian public and private health services - a sample from the study “The Psychological Well-Being of Elderly Persons Caring for Other Elderly Persons in a Family Context”. The variables: caregiver’s state of health, care demands, perception of burden, self-rated health, and quality of life were selected. Descriptive analyses, chi-squared tests, Fisher’s exact test, the Kruskal-Wallis test and analysis of multivariate hierarchical logistics were carried out, with theStepwisecriteria applied for selection of variables.

Results

: The hierarchical multivariate analyses found that number of symptoms and total burden were significantly associated with a poorer quality of life. Elderly persons with three or more symptoms and those with a high burden level were at a higher risk of poor quality of life. The variables number of diseases, burden, and self-rated health compared with the past, were significantly associated with a poorer quality of life.

Conclusion

: It can be concluded that for the elderly caregiver, physical aspects (signs and symptoms, chronic diseases and a perception of health deterioration) combined with burden are the aspects that most influence quality of life.

Keywords:
Caregivers; Elderly; Quality of Life; Health Vulnerability

Resumo

Objetivo:

Avaliar a associação entre a vulnerabilidade por ser idoso e ser cuidador e a qualidade de vida avaliada pelos fatores do Control, Autonomy, Self-realization and Pleasure (CASP-19).

Método:

Participaram deste estudo descritivo transversal, 148 idosos cuidadores selecionados por conveniência em serviços de saúde públicos e privados brasileiros - amostra do estudo “Bem-estar psicológico de idosos que cuidam de outros idosos no contexto da família”. Para este estudo, foram selecionadas as variáveis condições de saúde do cuidador, demanda de cuidados, percepção de sobrecarga, avaliação subjetiva da saúde e qualidade de vida. Foram realizadas análises descritivas, testes qui-quadrado, exato de Fisher, Kruskal-Wallis e análises de regressão logística hierárquica multivariada, com critério Stepwise de seleção de variáveis.

Resultados:

Nas análises multivariadas hierárquicas, verificou-se que o número de sintomas e sobrecarga total foi significativamente associado à pior qualidade de vida. Os idosos com maior risco de pior qualidade de vida apresentavam três ou mais sintomas e sobrecarga alta. As variáveis número de doenças, sobrecarga e avaliação subjetiva da saúde comparada com passado foram significativamente associadas à pior qualidade de vida.

Conclusão:

Pode-se concluir que, para o cuidador idoso, aspectos de saúde física (sinais e sintomas, doenças crônicas e percepção de piora da saúde) aliados à sobrecarga são os aspectos que mais influenciam a qualidade de vida desse tipo de cuidador.

Palavras-chave:
Cuidadores; Idoso; Qualidade de Vida; Vulnerabilidade em Saúde

INTRODUCTION

Available literature on informal caregivers is wide-ranging, emphasizing the importance of studies of caregivers in the context of population aging11 Moral-Fernández L, Frías-Osuna A, Moreno-Cámara S, Palomino-Moral PA, del-Pino-Casado R. Primeros momentos del cuidado: el proceso de convertirse en cuidador de un familiar mayor dependiente. Aten Primaria. 2018;50(5):282-90.

2 Nunes DP, Brito TRP de, Corona LP, Alexandre T da S, Duarte YA de O. Elderly and caregiver demand: proposal for a care need classification. Rev Bras Enferm. 2018;71(suppl 2):844-50.
-33 van Dam PH, Achterberg WP, Caljouw MAA. Care-Related Quality of Life of Informal Caregivers After Geriatric Rehabilitation. J Am Med Dir Assoc. 2017;18(3):259-64.. However, one consequence of population aging remains little investigated: the growing number of elderly persons who are caregivers of other elderly individuals. This caregiver profile deserves attention, as the elderly are more vulnerable due to their biological frailty and are more prone to the development of chronic diseases44 Boccolini CS, Camargo AT da SP. Morbimortalidade por doenças crônicas no Brasil: situação atual e futura. Rio de Janeiro: Fundação Oswaldo Cruz; 2016.

5 Mino-León D, Reyes-Morales H, Doubova SV, Pérez-Cuevas R, Giraldo-Rodríguez L, Agudelo-Botero M. Multimorbidity Patterns in Older Adults: An Approach to the Complex Interrelationships Among Chronic Diseases. Arch Med Res. 2017;48(1):121-7.
-66 Stenholm S, Westerlund H, Head J, Hyde M, Kawachi I, Pentti J, et al. Comorbidity and Functional Trajectories From Midlife to Old Age: The Health and Retirement Study. J Gerontol A Biol Sci Med Sci. 2015;70(3):332-8.. Caregivers of the elderly, in turn, are also vulnerable to suffering possible burden from their activities and responsibilities, and to social isolation77 Ajay S, Kasthuri A, Kiran P, Malhotra R. Association of impairments of older persons with caregiver burden among family caregivers: Findings from rural South India. Arch Gerontol Geriatr. 2017;68:143-8.

8 Ringer T, Hazzan AA, Agarwal A, Mutsaers A, Papaioannou A. Relationship between family caregiver burden and physical frailty in older adults without dementia: a systematic review. Syst Rev [Internet]. 2017 [cited 2018 Aug 23];6(1). Available from: http://systematicreviewsjournal.biomedcentral.com/articles/10.1186/s13643-017-0447-1
http://systematicreviewsjournal.biomedce...

9 Moon H, Townsend AL, Whitlatch CJ, Dilworth-Anderson P. Quality of Life for Dementia Caregiving Dyads: Effects of Incongruent Perceptions of Everyday Care and Values. The Gerontologist. 2016;38(1):57-62.
-1010 Alshammari S, Alzahrani A, Alabduljabbar K, Aldaghri A, Alhusainy Y, Khan M, et al. The burden perceived by informal caregivers of the elderly in Saudi Arabia. J Fam Community Med. 2017;24(3):145-50.. The elderly caregiver therefore suffers double vulnerability, needing to deal with the requirements of care and their own health needs at the same time.

A meta-analysis performed by Pinquart and Sorensen1111 Pinquart M, Sörensen S. Correlates of physical health of informal caregivers: a meta-analysis. J Gerontol B Psychol Sci Soc Sci. 2007;62(2):126-37. found that elderly caregivers have worse physical health than their younger counterparts. In considering psychological aspects, the study by Borg and Hallberg1212 Borg C, Hallberg I. Life satisfaction among informal caregivers in comparison with non-caregivers. Scand J Caring Sci. 2006; 20: 427-38. of caregivers aged 50-89 years found that life satisfaction declined as age increased. However, Chow and Ho1313 Chow EO-w, Ho HCY. Caregiver strain, age, and psychological well-being of older spousal caregivers in Hong Kong. J. Soc. Work. 2015; 15(5):479-97. studied caregivers of spouses aged 55 and above and found that elderly caregivers scored significantly lower in emotional and social distress, negative feelings, and depression. Despite this, they presented greater subjective well-being.

In this context, the Control, Autonomy, Self-Realization and Pleasure (CASP-19) scale emerged from the need for an instrument that evaluated quality of life in a form that was theoretically based and specific to the elderly. This instrument consists of four domains: control, autonomy, self-actualization and pleasure. The scale was developed on the basis of Maslow’s Basic Needs Theory, which understands that quality of life should be assessed as the degree to which human needs are met1414 Hyde M, Wiggins RD, Higgs P, Blane DB. A measure of quality of life in early old age: The theory, development and properties of a needs satisfaction model (CASP-19). Aging Ment Health. 2003;7(3):186-94..

The study by Di Novi et al.1515 Di Novi C, Jacobs R, Migheli M. The Quality of Life of Female Informal Caregivers: From Scandinavia to the Mediterranean Sea. Eur J Popul. 2015;31(3):309-33. which used a sample from the first two phases of the Survey of Health, Ageing and Retirement in Europe (SHARE) study, carried out in 11 European countries, used the CASP-19 scale to compare caregivers and non-caregivers aged 50 and over. The authors divided the sample into three groups (northern Europe, southern Europe and continental Europe), according to public expenditure on long-term care. The results revealed the cultural complexity of informal care, as there were differences between caregivers and non-caregivers in total CASP-19 results and scores for the factors of the scale. These data show that socio-cultural differences influence the perception of the quality of life of caregivers; requiring, therefore, that care is taken when comparing studies from different regions of the world and the adequacy of the instruments and forms of the studies.

Rafnsson et al.1616 Rafnsson SB, Shankar A, Steptoe A. Informal caregiving transitions, subjective well-being and depressed mood: Findings from the English Longitudinal Study of Ageing. Aging Ment Health. 2015; 24;1-9. analyzed 6,784 participants from the first three phases of the English Longitudinal Study of Aging (ELSA) to prospectively investigate the impact of transitions in informal care on the emotional well-being of the elderly. The results showed that in comparison with non-caregivers, caregivers of spouses or parents had lower CASP-19 scores at baseline and after a follow-up period. Participants who were not caregivers at baseline but who cared for a spouse or their parents two years later, as well as those who continued with the status of caregiver, had deteriorating CASP-19 scores.

In this context, the CASP-19 instrument has been found to be effective in several surveys, some of which1717 Hyde M, Higgs P, Wiggins RD, Blane D. A decade of research using the CASP scale: key findings and future directions. Aging Ment Health. 2015;19(7):571-5.,1818 Neri AL, Borim SA, Cachioni M, Rabelo DF, Fontes AP, Yassuda MS. Nova validação semântico-cultural e estudo psicométrico da CASP-19 em adultos e idosos brasileiros. Cad. Saúde Pública. 2018; 34(10): e00181417 have suggested working with factors other than those initially proposed. It is important to note that, although the scale has exhibited good internal consistency in several studies, the relationship between the items has demonstrated variability. This seems to be related to the specific characteristics of each population. These specificities need to be better explored for a more detailed understanding of the phenomenon. In a previous study with this sample1919 Flesch LD, Batistoni, SST, Neri, AL, Cachioni, M. Idosos que cuidam de idosos: dupla vulnerabilidade e qualidade de vida. Paideia (Ribeirão Preto). No prelo 2019., an association was established between double vulnerability and quality of life assessed by CASP-19.

The objective of the present study was to evaluate the association between double vulnerability (i.e. of elderly caregivers) and quality of life assessed by the factors of the CASP-19 scale, seeking a better understanding of this relationship through an evaluation of the disassembling of CASP-19 into factors. The model chosen was that developed by Neri et al.1818 Neri AL, Borim SA, Cachioni M, Rabelo DF, Fontes AP, Yassuda MS. Nova validação semântico-cultural e estudo psicométrico da CASP-19 em adultos e idosos brasileiros. Cad. Saúde Pública. 2018; 34(10): e00181417, who performed a semantic-cultural validation of the scale for Brazilian adults and elderly persons. In addition, the authors performed factorial analysis and identified two models, with three and two factors, respectively. The proposal of this study was to prioritize the similarity between samples and to use the two factor model (factor 1, evaluating pleasure and autonomy and factor 2, related to autonomy and control with negative connotations), as this is the only study that performed factorial analysis of the instrument with a Brazilian sample.

METHOD

Data were collected from October 2014 to September 2015 and are taken from the study “Psychological Well-Being of Elderly Persons Who Care for Other Elderly Persons in a Family Context” carried out at the Faculty of Medical Sciences of the Universidade Estadual de Campinas, São Paulo, Brazil. The project employed a descriptive cross-sectional design and aimed to analyze the effects of providing care on the physical and mental health of the caregiver, based on the stress and coping model proposed by Pearlin et al.2020 Pearlin LI, Mullan JT, Semple SJ, Skaff MM. Caregiving and the stress process: an overview of concepts and their measures. The Gerontologist. 1990;30(5):583-94.. From this database, sociodemographic variables (age, gender, date of birth, schooling, marital status and paid work), satisfaction with quality of life needs, self-assessment of health, perceived burden, the physical measurements of the caregiver and the degree of physical and cognitive dependence of the elderly recipient of care were selected for the present study.

Sample size was calculated based on the correlations between quality of life and the coping measures investigated in the study. The Pearson correlation coefficient method was used, with Fisher’s transformation, considering a level of significance of 1%, a test power of 90%, a null correlation of 0.10 and a minimum correlation of 0.40, resulting in the need to evaluate 140 caregivers.

The sample consisted of 148 people aged 60 years and older who informally cared for other elderly persons with some type of physical or cognitive impairment. They were recruited on a convenience basis in public and private health services in cities in southeastern Brazil, namely Jundiaí (38.5%), Indaiatuba (29.1%), Campinas (18.2%) and Vinhedo (14.2%), all of which are in the state of Sao Paulo.

The exclusion criterion applied was a score below the cut-off point of the Cognitive Abilities Screening Instrument - Short Form (CASI-S) validated for Brazil by Damasceno et al.2121 Damasceno A, Delicio AM, Mazo DFC, Zullo JFD, Scherer P, Ng RTY, et al. Validation of the Brazilian version of mini-test CASI-S. Arq Neuropsiquiatr [Internet]. 2005 Jun [cited 2016 Aug 17];63(2b). Available from: http://www.scielo.br/scielo.php?script=sci_arttext&pid=S0004-282X2005000300010&lng=en&nrm=iso&tlng=en
http://www.scielo.br/scielo.php?script=s...
. The cutoff point for cognitive deficit is 23 for elderly persons aged 60 to 69 years and 20 for elderly persons aged 70 years and over.

Initially, the project was submitted to and approved by the Research Ethics Committee of the Universidade Estadual de Campinas (opinion: 822.364/2014). Participants were then invited to take part in the survey at the health service where the elderly care recipient received treatment. After signing a Free and Informed Consent Form, the research protocol, which lasted approximately one hour, was applied. The interviews were carried out at the health service or at home, when it was not possible for the caregiver to remain at the health service. Conducting interviews at the health service was authorized by the health professionals responsible through a printed document. Seven trained interviewers conducted the interviews at locations and times previously agreed upon with the participants.

The interviews were conducted in two parts. The first contained questions about the socioeconomic variables of the caregiver and their family, the cognition of the elderly care recipient, and the health conditions of the participants. The second part consisted of evaluations of the physical, psychological and social conditions inherent to the provision of care, family functionality, the health conditions and functionality of the care recipient, a subjective evaluation of care burden, subjective well-being, coping, and a self-assessment of health. After the interview the participants were offered a booklet with instructions on how to facilitate communication with the elderly. The instruments used are described in Chart 1.

Chart 1
Variables of interest and instruments used in study. Campinas, São Paulo, 2015.

Descriptive analysis was performed to describe the profile of the sample. Chi-squared and Fisher’s exact tests were used to compare the categorical variables. The Kruskal-Wallis test was performed to compare the numerical variables between the three groups. After this test was applied, Dunn’s post-hoc multiple comparisons test was used to identify the differences in the pairs. To analyze the association between the independent variables and quality of life, multivariate hierarchical logistic regression analysis was used, with a Stepwise variable selection criterion. The level of significance was 5%.

RESULTS

The participants were aged between 60 and 86 years old, with a mean age of 69.8 (+7.1) years. The majority were women (77%) and had between 0 and 4 years of schooling (87%), while 51% were the sole caregiver. Regarding the care recipient, 62% were spouses, 28% offspring and 10% other family members, and the mean age was 81 (+9.8) years.

Tables 1 and 2 show the results of the comparisons of the categorical and numerical variables between the terciles of the quality of life factor scores and the results of the hierarchical logistic regression analysis for worsening in quality of life factor 1 and quality of life factor 2. There was a significant difference between the terciles of the quality of life factor 1 score and the number of symptoms (a greater frequency of three or more symptoms in caregivers with worse quality of life), frailty (greater frequency of frail caregivers in those with worse quality of life), Zarit burden scale total and factor scores (greater frequency of greater degree of burden in those with worse quality of life), and subjective evaluation of current health and health compared with the past (greater frequency of worse subjective assessment of current health and health compared with the past in caregivers with worse quality of life).

Table 1
Comparison between the frequencies of Casp-19/factor 1 and results of univariate logistic regression analysis for worse quality of life/factor 1, physical health, dependence of recipient of care, burden and self-assessment of health (N=148). Campinas, São Paulo, 2015.
Table 2
Comparison between Casp-19/factor 2 and results of univariate logistic regression analysis for worse quality of life/factor 2, physical health, dependence of recipient of care, burden and self-assessment of health (N=148). Campinas, São Paulo, 2015.

There was also a significant difference between the terciles of the quality of life factor 2 score based on gender (greater frequency of women in caregivers with worse quality of life), number of diseases (greater frequency of three or more diseases in caregivers with worse quality of life), Zarit burden scale total and factor scores (greater frequency of greater degree of burden in caregivers with worse quality of life), and subjective health assessment (greater frequency of regular health with worse quality of life).

In the hierarchical multivariate analyzes, the number of symptoms and total burden were significantly associated with poorer quality of life in the factor 1 score. The elderly persons with the highest risk of a worse quality of life were those with three or more symptoms (3.0 times greater risk), and a high degree of burden (5.9 times greater risk). The variables number of diseases, burden factor 2 and subjective assessment of health compared with the past were significantly associated with a worse quality of life in the factor 2 score. The elderly with the highest risk of a worse quality of life were those with three or more diseases (5.0 times greater risk), those with a high degree of factor 2 burden (6.0 times greater risk), and a worse assessment of health compared with the past (4.9 times greater risk).

DISCUSSION

Despite its different dimensions, burden was the most significant variable in determining quality of life. For factor 1, total burden remained in the model. For factor 2, only burden-factor 2 remained in the final model.

Factor 1 is more related to issues of pleasure and self-realization, or how one perceives one’s life. This association was expected because, although perceived burden was associated with objective issues related to care, such as the degree of dependence of the care recipient and hours dedicated to care3434 Fuhrmann AC, Bierhals CCBK, Santos NO dos, Paskulin LMG. Association between the functional capacity of dependant elderly people and the burden of family caregivers. Rev Gaúcha Enferm. 2015;36(1):14-20.,3535 Adelman RD, Tmanova LL, Delgado D, Dion S, Lachs MS. Caregiver Burden: A Clinical Review. JAMA. 2014;311(10):1052., it was also related to the variables quality of life and well-being of the caregiver3636 Rodríguez-Pérez M, Abreu-Sánchez A, Rojas-Ocaña MJ, del-Pino-Casado R. Coping strategies and quality of life in caregivers of dependent elderly relatives. Health Qual Life Outcomes [Internet]. 2017 Jan [cited 2018 Aug 23];15(1). Available from: http://hqlo.biomedcentral.com/articles/10.1186/s12955-017-0634-8
http://hqlo.biomedcentral.com/articles/1...
,3737 IsIk K, Erci B. Life Satisfaction and Care Burden of Caregivers Who Provide Care at Home to Elderly Patients and the Inflfluencing Factors. Turk Klin J Nurs Sci. 2018;10(1):11-7..

Factor 2 is more closely related to control and autonomy, especially in relation to external factors. Contador et al.3838 Contador I, Fernández-Calvo B, Palenzuela DL, Miguéis S, Ramos F. Prediction of burden in family caregivers of patients with dementia: A perspective of optimism based on generalized expectancies of control. Aging Ment Health. 2012;16(6):675-82. evaluated the burden of informal caregivers of patients with dementia and verified that aspects related to control (self-efficacy and contingency) most explained burden. In this study, only factor 2 burden, which concerns intrapsychic tensions, remained in the final model.

Regarding caregiver health, having more signs and symptoms of disease was associated with a worse factor 1 quality of life, while chronic diseases were associated with factor 2 quality of life. Although signs and symptoms are directly related to physical health, studies have shown that the manifestation of symptoms does not occur in the same way for all subjects. The perception of symptoms is related to attention to internal states, mood, cognition and environment3939 Ogden J. Health psychology: a textbook. 5th edition. Maidenhead: Open University Press; 2012..

Thus, exhibiting more signs and symptoms of disease and perceiving greater burden was associated with lower quality of life in the pleasure and self-realization dimension; and the presence of more chronic diseases, perception of declining health and more intrapsychic stresses related to care were associated with lower quality of life in the control and autonomy dimension.

In general, the health of the caregiver (signs and symptoms, chronic diseases and perception of poor health) and perceived burden were the aspects most associated with quality of life. However, the degree of physical and cognitive dependence of the care recipient did not prove very important for this association. These data suggest that for the elderly caregiver, their health and how they perceive the burden of care influence quality of life more than the dependencies of the elderly care recipient.

Although it provides advances in our theoretical knowledge of elderly persons who care for other elderly persons, the present study has limitations. As it did not use a representative sample, the results cannot be extended to the entire population of elderly caregivers in Brazil.

CONCLUSION

When the two factors are considered it can be concluded that, for elderly caregivers, aspects of physical health (signs and symptoms, chronic diseases and perception of worsening of health), together with burden, most influence the quality of life of this type of caregiver.

The objective conditions of care (degree of physical and cognitive dependence of the care recipient) did not appear to be relevant to the caregiver’s quality of life, contrary to the findings of other studies. Perhaps because of their age, the health of the caregiver is more important than the dependence of the care recipient.

Further studies on the elderly who informally care for other elderly persons are recommended. It is important to carry out research that tests interventions with this specific population, in order to propose improvements to the quality of life of these caregivers.

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  • Financing:

    Coordenadoria de Aperfeiçoamento de Pessoal do Ensino Superior (CAPES), through PhD scholarship (reference nº 1271787)

Publication Dates

  • Publication in this collection
    09 Sept 2019
  • Date of issue
    2019

History

  • Received
    27 Aug 2018
  • Accepted
    01 June 2019
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