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Sociodemographic, clinical, and psychosocial factors associated with burden in older caregivers: a cross-sectional study

Fatores sociodemográficos, clínicos e psicossociais associados à sobrecarga de idosos cuidadores de idosos: um estudo transversal

Abstract

The task of caring can negatively affect the physical and mental health; therefore, it is important to understand which factors are associated with burden in older caregivers of older adults.

Objective:

This study aimed to explore sociodemographic, clinical, and psychosocial factors associated with burden in older caregivers of older adults.

Methods:

This is a cross-sectional study developed with 349 older caregivers who were registered at a Family Health Unit of a city in the state of São Paulo, Brazil. Household interviews were conducted and data were collected on the sociodemographic (profile, family income), clinical (self-reported pain, sleep, frailty), and psychosocial (burden, family functioning, depressive symptoms, stress) characteristics of the caregivers as well as dependence on activities of daily living and cognition in the care recipients.

Results:

Women predominated in the sample (76.5%) and mean age was 69.5 years. The mean burden score was 18.06 points, with 47.9% above the cutoff of 16 points, denoting excessive burden. The bivariate model revealed associations between burden and financial insufficiency, family dysfunction, difficulty sleeping, pain, perceived stress, depressive symptoms, frailty, and multimorbidity among the caregivers as well as worse functional and cognitive performance in the care recipients. The controlled model revealed an association between burden and depressive symptoms (β=16.75; 95%CI 1.80–31.68).

Conclusions:

We identified an association between burden and depressive symptoms, underscoring the need for the planning and implementation of specific actions directed at caregivers in order to minimize the impact on health and to improve the quality of life.

Keywords:
Aged; Caregiver Burden; Family Health

RESUMO

A tarefa de cuidar pode afetar negativamente a saúde física e mental, sendo importante compreender quais os fatores associados à sobrecarga em idosos cuidadores de idosos.

Objetivo:

Explorar os fatores sociodemográficos, clínicos e psicossociais associados à sobrecarga em idosos cuidadores de idosos.

Métodos:

Estudo transversal desenvolvido com 349 idosos cuidadores cadastrados nas unidades de Saúde da Família de um município do interior paulista. Foram realizadas entrevistas domiciliares e coletados dados sobre as informações sociodemográficas (perfil, renda familiar), clínicas (dor autorrelatada, sono, fragilidade) e psicossociais (sobrecarga, funcionalidade familiar, sintomas depressivos, estresse) do cuidador, bem como dados de funcionalidade e cognição dos receptores de cuidados.

Resultados:

Houve prevalência do sexo feminino (76,5%), com média de idade de 69,5 anos. A média do escore da sobrecarga foi 18,06 pontos, com 47,9% dos idosos cuidadores acima da nota de corte de 16 pontos. O modelo univariado revelou associação entre sobrecarga e percepção de insuficiência financeira, disfunção familiar, dificuldade de dormir, dor, estresse percebido, sintomas depressivos, fragilidade e multimorbidade, além de pior desempenho funcional e cognitivo dos idosos receptores de cuidados. No modelo controlado houve associação entre sobrecarga e sintomas de depressão (β=16,75; intervalo de confiança — IC95% 1,80–31,68).

Conclusão:

Identificamos associação entre sobrecarga e sintomas depressivos, de modo que é necessário planejar e implementar cuidados específicos a fim de minimizar o impacto na saúde dos cuidadores e favorecer a qualidade de vida.

Palavras-chave:
Idoso; Fardo do Cuidador; Saúde da Família

INTRODUCTION

The aging of the population has culminated in an increase in longevity but has also resulted in an increased need for providing care to older adults. Such care, especially in the home setting, is mainly offered by informal caregivers and family members who provide varied types of care without pay11. Minayo MCS. Caring for those who care for dependent older adults: for a necessary and urgent policy. Cienc Saude Colet. 2021;26(1):7-15. https://doi.org/10.1590/1413-81232020261.30872020
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. Most of these informal caregivers are women (wife or daughter) who reside with the care recipient, provide care without assistance, and have no training in caregiving11. Minayo MCS. Caring for those who care for dependent older adults: for a necessary and urgent policy. Cienc Saude Colet. 2021;26(1):7-15. https://doi.org/10.1590/1413-81232020261.30872020
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,22. Ottaviani AC, Brigola AG, Terassi M, Luchesi BM, Souza EN, Oliveira NA, et al. Comparison of cognitive performance and aspects of the care context in elderly caregivers in Brazil: a follow-up study. Dement Neuropsychol. 2020;14(2):159-64. https://doi.org/10.1590/1980-57642020dn14-020009
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.

A change in this profile has been seen in recent years, with an increase in the number of informal caregivers who are also older adults33. Bianchi M, Flesch LD, Alves EVC, Batistoni SST, Neri AL. Zarit burden interview psychometric indicators applied in older people caregivers of other elderly. Rev Lat Am Enfermagem. 2016;24:e2835. https://doi.org/10.1590/1518-8345.1379.2835
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,44. Pavarini SCI, Neri AL, Brígola AG, Ottaviani AC, Souza EM, Rossetti ES, et al. Elderly caregivers living in urban, rural and high social vulnerability contexts. Rev Esc Enferm USP. 2017;51:e03254. https://doi.org/10.1590/S1980-220X2016040103254
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. Providing care for an older adult has both positive and negative consequences for the caregiver. The positive aspects include a sense of satisfaction, retribution, a stronger bond and exchange of affection as well as personal and spiritual growth55. Lloyd J, Patterson T, Muers J. The positive aspects of caregiving in dementia: a critical review of the qualitative literature. Dementia (London). 2016;15(6):1534-61. https://doi.org/10.1177/1471301214564792
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. The negative consequences can be both physical and psycho-emotional, such as pain, an increase in the use of medications, depressive symptoms, stress, and excessive burden related to the care provided66. Bom J, Bakx P, Schut F, van Doorslaer E. The impact of informal caregiving for older adults on the health of various types of caregivers: a systematic review. Gerontologist. 2019;59(5):e629-e642. https://doi.org/10.1093/geront/gny137
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88. Luchesi BM, Souza ÉN, Gratão ACM, Gomes GAO, Inouye K, Alexandre TS, et al. The evaluation of perceived stress and associated factors in elderly caregivers. Arch Gerontol Geriatr. 2016;67:7-13. https://doi.org/10.1016/j.archger.2016.06.017
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. These factors can be even more intense when the caregiver is an older adult who also has limitations related to aging, which can affect the caregiver’s health and have negative consequences for the older care recipient77. Delfino LL, Komatsu RS, Komatsu C, Neri AL, Cachioni M. Neuropsychiatric symptoms associated with family caregiver burden and depression. Dement Neuropsychol. 2021;15(1):128-35. https://doi.org/10.1590/1980-57642021dn15-010014
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,88. Luchesi BM, Souza ÉN, Gratão ACM, Gomes GAO, Inouye K, Alexandre TS, et al. The evaluation of perceived stress and associated factors in elderly caregivers. Arch Gerontol Geriatr. 2016;67:7-13. https://doi.org/10.1016/j.archger.2016.06.017
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.

Caregiver burden is a concept that encompasses consequences associated with the care provided. Such burden is related to diverse financial, physical, psychological, and social dimensions in the life of the caregiver and is generally assessed based on subjective perceptions33. Bianchi M, Flesch LD, Alves EVC, Batistoni SST, Neri AL. Zarit burden interview psychometric indicators applied in older people caregivers of other elderly. Rev Lat Am Enfermagem. 2016;24:e2835. https://doi.org/10.1590/1518-8345.1379.2835
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,99. Scazufca M. Brazilian version of the Burden Interview scale for the assessment of burden of care in carers of people with mental illnesses. Braz J Psychiatry. 2002;24(1):12-7. https://doi.org/10.1590/S1516-44462002000100006
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. To date, most research on measures of caregiving burden has been quantitative, providing tools that are easily adapted within clinical settings1010. Bastawrous M. Caregiver burden--a critical discussion. Int J Nurs Stud. 2013;50(3):431-41. https://doi.org/10.1016/j.ijnurstu.2012.10.005
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and valuable information for evidence-based intervention programs. Review studies1111. Mosquera I, Vergara I, Larrañaga I, Machón M, del Río M, Calderón C. Measuring the impact of informal elderly caregiving: a systematic review of tools. Qual Life Res. 2016;25(5):1059-92. https://doi.org/10.1007/s11136-015-1159-4
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,1212. Liu Z, Heffernan C, Tan J. Caregiver burden: a concept analysis. Int J Nurs Sci. 2020;7(4):438-45. https://doi.org/10.1016/j.ijnss.2020.07.012
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indicate that the tool most widely employed for evaluating burden was the Zarit Burden Interview (ZBI), in particular the 22-item version. In addition to its psychometric properties, the ZBI has been widely used across languages and cultures1111. Mosquera I, Vergara I, Larrañaga I, Machón M, del Río M, Calderón C. Measuring the impact of informal elderly caregiving: a systematic review of tools. Qual Life Res. 2016;25(5):1059-92. https://doi.org/10.1007/s11136-015-1159-4
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.

The literature reports factors associated with caregiver burden. A systematic review identified that caregiver burden is negatively associated with perceived social support in caregivers1313. Del-Pino-Casado R, Frías-Osuna A, Palomino-Moral PA, Ruzafa-Martínez M, Ramos-Morcillo AJ. Social support and subjective burden in caregivers of adults and older adults: a meta-analysis. PLoS One. 2018;13(1):e0189874. https://doi.org/10.1371/journal.pone.0189874
https://doi.org/10.1371/journal.pone.018...
. A clinical review listed risk factors of caregiver burden, such as the female sex, a low level of schooling, living with the care recipient, providing care more hours of the day, depression, social isolation, financial problems, and not choosing to be a caregiver1414. Adelman RD, Tmanova LL, Delgado D, Dion S, Lachs MS. Caregiver burden: a clinical review. JAMA. 2014;12;311(10):1052-60. https://doi.org/10.1001/jama.2014.304
https://doi.org/10.1001/jama.2014.304...
. The findings of a systematic review suggest the presence of sex and gender differences in caregiving burden, with female caregivers experiencing greater burden compared to their male counterparts1515. Xiong C, Biscardi M, Astell A, Nalder E, Cameron JI, Mihailidis A, et al. Sex and gender differences in caregiving burden experienced by family caregivers of persons with dementia: a systematic review. PLoS One. 2020;15(4):e0231848. https://doi.org/10.1371/journal.pone.0231848
https://doi.org/10.1371/journal.pone.023...
.

Among community-dwelling older caregivers, predictive factors of burden are related to the caregiver themselves, such as age, self-rated health, income, and the duration of care1616. Limpawattana P, Theeranut A, Chindaprasirt J, Sawanyawisuth K, Pimporm J. Caregivers burden of older adults with chronic illnesses in the community: a cross-sectional study. J Community Health. 2013;38(1):40-5. https://doi.org/10.1007/s10900-012-9576-6
https://doi.org/10.1007/s10900-012-9576-...
. In caregivers of patients with dementia, burden is also related to the characteristics of the patient, such as behavioral and psychological symptoms, and factors related to the caregiver, such as income, sex, schooling, residing with the patient, psychological health, well-being, and symptoms of depression and anxiety1717. Chiao CY, Wu HS, Hsiao CY. Caregiver burden for informal caregivers of patients with dementia: a systematic review. Int Nurs Rev. 2015;62(3):340-50. https://doi.org/10.1111/inr.12194
https://doi.org/10.1111/inr.12194...
. One study showed that pain is normally underestimated in older caregivers and is related to the emotional and physical dimensions of caregiver burden1818. Jones SL, Hadjistavropoulos HD, Janzen JA, Hadjistavropoulos T. The relation of pain and caregiver burden in informal older adult caregivers. Pain Med. 2011;12(1):51-8. https://doi.org/10.1111/j.1526-4637.2010.01018.x
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.

The studies cited above were conducted with caregivers of different ages (normally in the adult phase), which impedes the identification of the specificities of older caregivers. Moreover, most studies on caregiver burden are limited to groups of caregivers of patients with specific adverse conditions, such as dementia, cancer, and stroke, which limits the generalization of the data and identification of factors common to diverse care contexts1414. Adelman RD, Tmanova LL, Delgado D, Dion S, Lachs MS. Caregiver burden: a clinical review. JAMA. 2014;12;311(10):1052-60. https://doi.org/10.1001/jama.2014.304
https://doi.org/10.1001/jama.2014.304...
. Thus, there is a need to investigate factors related to caregiver burden in older adults who provide care for dependent older adults. The aim of the present study was to explore sociodemographic, clinical, and psychosocial factors associated with burden in older caregivers of older adults.

METHODS

A quantitative cross-sectional study selected participants based on the following inclusion criteria: age of 60 years or older, registration at a Family Health Unit (primary care modality) in a city in the state of São Paulo, and providing care to a dependent older adult residing in the same home. To be considered dependent, the care recipients needed to require assistance on at least one basic activity of daily living (BADL) listed in the Katz Index1919. Lino VTS, Pereira SRM, Camacho LAB, Ribeiro Filho ST, Buksman S. Cross-cultural adaptation of the Independence in Activities of Daily Living Index (Katz Index). Cad Saúde Pública. 2008;24(1):103-12. https://doi.org/10.1590/S0102-311X2008000100010
https://doi.org/10.1590/S0102-311X200800...
and/or instrumental activity of daily living (IADL) listed on the Lawton & Brody Scale2020. Santos RL, Virtuoso Junior JS. Reliability of the Brazilian version of the Scale of Instrumental Activiies of Daily Living. Revista Brasileira em Promoção da Saúde. 2008;21(4):290-6.. These measures were also administered to the older caregivers, who needed to be more independent of the care recipients with whom they lived.

The exclusion criteria were as follows: both older adults independent regarding the performance of BADL and IADL, caregivers with severe hearing or visual impairment that would compromise their ability to answer the questionnaires, communications difficulties the impeded the understanding of the questions, the death of one of the older people in the home, a change of address, and individuals who were not encountered after three attempts on different days and at different times.

The sample was selected from a total of 594 residences listed by the Family Health teams where two or more older adults resided. Among these residences, one of the older adults had deceased in 26 homes, a change of address had occurred in 28 cases, the older people were not encountered after three attempts at 69 homes, the older adults declined to participate in the study in 84 homes, and all older adults were independent regarding the performance of BADL and IADL in 36 homes. Among the remaining 351 residences with 351 older caregivers who answered the questionnaire, 2 were excluded from the present analysis for not having completed the evaluations. Thus, the final sample was composed of 349 older caregivers of dependent older care recipients.

Data collection was performed in the homes of the participants after previous contact by trained researchers between April and November 2014. The interviews were conducted in a single session and lasted approximately 1.5 h. All ethical procedures for research involving human subjects were respected in accordance with Resolution 466/2012 of the National Board of Health. This study was authorized by the municipal Secretary of Health and received approval from the Human Research Ethics Committee of Universidade Federal de São Carlos (CAAE: 45904621.7.0000.5504). The statement of informed consent was read and explained to each volunteer and signed by all participants prior to data collection.

The variables of interest were investigated using the following measures:
  • Sociodemographic, health-related, and care-related characteristics: Data collected using a questionnaire created by the research team addressing sex (male or female), age (years), income (using the national monthly minimum wage in the first semester of 2014 [R$ 724] as reference), income sufficiency (yes or no), difficulty sleeping (yes or no), self-reported diseases (number), pain (yes or no), financial support in providing care (yes or no), assistance from a health institution for providing care (yes or no), assistance from a social service (yes or no), emotional support (yes or no), and assistance from a religious group (yes or no).

  • Level of dependence of care recipient for BADL: Katz Index – ability to perform activities of bathing, dressing, toileting, transferring, continence, and feeding1919. Lino VTS, Pereira SRM, Camacho LAB, Ribeiro Filho ST, Buksman S. Cross-cultural adaptation of the Independence in Activities of Daily Living Index (Katz Index). Cad Saúde Pública. 2008;24(1):103-12. https://doi.org/10.1590/S0102-311X2008000100010
    https://doi.org/10.1590/S0102-311X200800...
    . Care recipients with one or more limitations regarding these activities were considered dependent.

  • Level of dependence of care recipient for IADL: Lawton & Brody Scale – degree of dependence regarding performance of activities of housekeeping, handling finances, telephone use, managing medications, mode of transportation, shopping, and preparing meals2020. Santos RL, Virtuoso Junior JS. Reliability of the Brazilian version of the Scale of Instrumental Activiies of Daily Living. Revista Brasileira em Promoção da Saúde. 2008;21(4):290-6.. For the purposes of analysis, a score of 7 points was considered indicative of complete dependence regarding IADL and a score of 8–20 points was considered indicative of partial dependence.

  • Cognition of care recipient: Evaluated using Addenbrooke’s Cognitive Examination – Revised (ACE-R), which employs the Mini-Mental State Examination for the global cognitive assessment and assessment of the following domains: orientation/attention, memory, verbal influence, language, and visuospatial. The final score ranges from 0 to 100 points, with higher scores denoting a better cognitive performance2121. Mioshi E, Dawson K, Mitchell J, Arnold R, Hodges JR. The Addenbrooke’s Cognitive Examination Revised (ACE-R): a brief cognitive test battery for dementia screening. Int J Geriatr Psychiatry. 2006;21(11):1078-85. https://doi.org/10.1002/gps.1610
    https://doi.org/10.1002/gps.1610...
    . For the purposes of analysis, a score lower than 65 points was considered indicative of poor cognitive functioning2222. César KG, Yassuda MS, Porto FHG, Brucki SMD, Nitrini R. Addenbrooke’s cognitive examination-revised: normative and accuracy data for seniors with heterogeneous educational level in Brazil. Int Psychogeriatr. 2017;29(8):1345-53. https://doi.org/10.1017/S1041610217000734
    https://doi.org/10.1017/S104161021700073...
    .

  • Family functioning: Evaluated using the Family APGAR measure, which is used to analyze satisfaction with Adaptation, Partnership, Growth, Affection, and Resolve. The score ranges from 0 to 20 points, with higher scores denoting better family functioning2323. Duarte YAO. Família: rede de suporte ou fator estressor. A ótica de idosos e cuidadores familiares [tese]. São Paulo: Escola de Enfermagem Universidade de São Paulo; 2001., a score of 20 points was considered normal family functioning, and scores between 0 and 19 points were considered indicative of some degree of family dysfunction.

  • Frailty: Evaluated using unintentional weight loss in the previous year, fatigue considering the previous week, muscle weakness, slow gait, and low physical activity level in comparison to the previous year. Unintentional weight loss, fatigue, and physical activity level were self-reported. Muscle weakness was quantified by the mean of three consecutive measures of grip strength of the dominant hand in kgf using a Jamar hydraulic handgrip dynamometer (Model SH5001, manufactured by SAEHAN®, Lafayette, IL, USA), with the result adjusted for sex and body mass index (BMI). Slow gait was assessed by the mean of three measures of the time in seconds required to walk 4.6 m along a straight line on a flat surface at one’s usual pace, permitting the use of a gait assistance device if needed. Based on Fried’s phenotype, three to five components characterized frailty, one or two components characterized pre-frailty, and the absence of components characterized non-frailty2424. Fried LP, Tangen CM, Waltson J, Newman AB, Hirshc C, Gottdiener J, et al. Frailty in older adults: evidence for a phenotype. J Gerontol A Biol Sci Med Sci. 2001;56(3):M146-56. https://doi.org/10.1093/gerona/56.3.m146
    https://doi.org/10.1093/gerona/56.3.m146...
    .

  • Perceived stress: Measured using the Perceived Stress Scale (PSS), which was developed to assess the extent to which individuals perceive their living situation as stressful. The total ranges from 0 to 56 points, with higher scores denoting higher levels of perceived stress2525. Luft CDB, Sanches SO, Mazo GZ, Andrade GZ. Brazilian version of the Perceived Stress Scale: translation and validation for the elderly. Rev Saude Publica. 2007;41(4):606-15. https://doi.org/10.1590/S0034-89102007000400015
    https://doi.org/10.1590/S0034-8910200700...
    . In the present study, a score higher than the median among the participants (17 points) was considered indicative of stress.

  • Depressive symptoms: Measured using the Geriatric Depression Scale (GDS-15), which addresses mood in older people. The total ranges from 0 to 15 points, with higher scores denoting a higher level of depressive symptoms2626. Almeida OP, Almeida SA. Reliability of the Brazilian version of the ++abbreviated form Geriatric Depression Scale (GDS) short form. Arq Neuropsiquiatr. 1999;57(2B):421-6. https://doi.org/10.1590/s0004-282x1999000300013
    https://doi.org/10.1590/s0004-282x199900...
    . In the present study, a cutoff point of >5 points was considered indicative of depressive symptoms.

  • Caregiver burden (dependent variable): Measured using the ZBI, which addresses the perceived impact of providing care on the health of the caregiver. The total is calculated from the sum of the points of the 22 items and ranges from 0 to 88 points, with higher scores denoting a greater intensity of caregiver burden2727. Scazufca M. Brazilian version of the Burden Interview scale for the assessment of burden of care in carers of people with mental illnesses. Braz J Psychiatry. 2002;24(1):10-5. https://doi.org/10.1590/S1516-44462002000100006
    https://doi.org/10.1590/S1516-4446200200...
    . The older caregivers were divided into two groups based on the median among the participants, with ≥16 points considered indicative of excessive burden.

The data were compiled, entered twice in a blinded manner to the Epidata 3.1 software program, and exported to the Statistical Package for the Social Sciences (SPSS for Windows), version 21 (IBM Inc., Chicago, IL, USA). Sociodemographic, health-related, and care-related data were expressed as absolute frequency (n), relative frequency (%), and mean and standard deviation values (Table 1). Linear regression was used to analyze continuous and categorical independent variables associated with the dependent variable (caregiver burden – continuous variable) (Table 2). Associations with a p-value ≤0.20 in the bivariate analysis were selected and employed using the gradual approach and those with a p-value≤0.05 after adjustments in the multiple analysis remained in the final model. The regression data were expressed as β (beta) values and respective 95% confidence intervals (CI). The adjusted R22. Ottaviani AC, Brigola AG, Terassi M, Luchesi BM, Souza EN, Oliveira NA, et al. Comparison of cognitive performance and aspects of the care context in elderly caregivers in Brazil: a follow-up study. Dement Neuropsychol. 2020;14(2):159-64. https://doi.org/10.1590/1980-57642020dn14-020009
https://doi.org/10.1590/1980-57642020dn1...
of the linear regression was used to analyze the representativeness of the final model regarding the variance in caregiver burden.

Table 1.
Sociodemographic, clinical, and psychosocial characteristics of older caregivers and dependence and cognition of older care recipients (n=349), São Carlos, Brazil, 2014.
Table 2.
Results of linear regression for factors associated with total score of 22-item Zarit Burden Interview (n=349). São Carlos, Brazil, 2014.

RESULTS

Data from 349 older caregivers were analyzed. The mean score of the ZBI was 18.06±14.54 points, with 167 (47.9%) individuals above the cutoff of 16 points, denoting excessive burden. Table 1 displays the sociodemographic, clinical, and psychosocial characteristics of the caregivers as well as data on the functional dependence and cognitive status of the care recipients. Mean caregiver age was 69.5 years. Women, a perception of insufficient family income, and the absence of financial and emotional support predominated in the sample of caregivers.

Difficulty sleeping, perceived stress, and depressive symptoms were found in more than half of the caregivers. Reports of pain and multiple morbidities were found in 60 and 80%, respectively. Most care recipients were partially dependent with regard to IADLs and had an ACE-R score indicative of poor cognitive functioning.

Table 2 displays the results of the linear regression analysis for the dependent variable (total score on ZBI). Family income, perception of financial insufficiency, and family dysfunction were social factors associated with a greater perception of burden in the bivariate model. Difficulty sleeping, pain, perceived stress, depressive symptoms, frailty, and multimorbidity were clinical factors that increased the likelihood of a higher score on the burden scale. Poor functional and cognitive performance of the care recipient were associated with an increase in the caregiver burden score. When the factors were controlled in the multiple regression model, only depressive symptoms remained associated with greater caregiver burden.

The adjusted R2 revealed that the controlled model explained 32.7% of the variance in caregiver burden. In the bivariate regressions, the perceived stress score (PSS) and depressive symptoms (GDS) each explained 11% of the variance in burden.

DISCUSSION

This study explored factors related to burden in older adults who provide care for dependent older adults. The bivariate analysis revealed that family income, perception of financial insufficiency, and family dysfunction were sociodemographic factors associated with greater caregiver burden. Difficulty sleeping, pain, perceived stress, depressive symptoms, frailty, and multimorbidity were psychosocial/clinical factors associated with greater caregiver burden. Moreover, poor functional and cognitive performance in the care recipients were factors associated with an increase in caregiver burden. The final regression model revealed that older caregivers with depressive symptoms were 16.75-fold more likely to have a higher score on the ZBI.

The mean burden score was 18.06 points, and 47.9% of the caregivers had a score higher than the cutoff of 16 points. This mean score is comparable to the score reported in the study by James et al.2828. James K, Chin-Bailey C, Holder-Nevins D, Thompson C, Donaldson-Davis K, Eldemire-Shearer D. Zarit burden interview among caregivers of community-dwelling older adults in a caribbean setting (Jamaica): reliability and factor structure. Health Soc Care Community. 2021;29(5):e79-e88. https://doi.org/10.1111/hsc.13244
https://doi.org/10.1111/hsc.13244...
(16.92±12.04 points), but lower than that reported by Connors et al.2929. Connors MH, Seeher K, Teixeira-Pinto A, Woodward M, Ames D, Brodaty H. Dementia and caregiver burden: a three-year longitudinal study. Int J Geriatr Psychiatry. 2020;35(2):250-8. https://doi.org/10.1002/gps.5244
https://doi.org/10.1002/gps.5244...
(24.0±15.8 points). However, the studies cited were not conducted exclusively with older caregivers. Divergences among studies may be due to methodological differences and/or sample heterogeneity as well as cultural factors3030. Souza ALR, Guimarães RA, Vilela DA, Assis RM, Oliveira LMAC, Souza MR, et al. Factors associated with the burden of family caregivers of patients with mental disorders: a cross-sectional study. BMC Psychiatry. 2017;17(1):353. https://doi.org/10.1186/s12888-017-1501-1
https://doi.org/10.1186/s12888-017-1501-...
.

The associations between greater perceived burden and family income/perception of financial insufficiency have also been reported in previous studies3131. Rangel RL, Santos LB, Santana ES, Marinho MS, Chaves RN, Reis LA. Evaluation of family caregiver overload of elderly with functional dependence. Rev Aten Saúde. 2019;17(60):11-8. https://doi.org/10.13037/ras.vol17n60.5564
https://doi.org/10.13037/ras.vol17n60.55...
,3232. Li J. Predictors of family caregiver burden in Shanghai. J Appl Gerontol. 2021;40(7):703-12. https://doi.org/10.1177/0733464820951029
https://doi.org/10.1177/0733464820951029...
. Care is often provided by a family member, generally a wife, daughter, or daughter-in-law of the dependent older adult. These women make sacrifices in terms of their own personal, professional, and social lives and are commonly not paid or live on the income of the care recipient. Those who receive some type of financial support generally consider the contribution insufficient and those who live on little or no income have fewer options when providing for the needs of the care recipient.11. Minayo MCS. Caring for those who care for dependent older adults: for a necessary and urgent policy. Cienc Saude Colet. 2021;26(1):7-15. https://doi.org/10.1590/1413-81232020261.30872020
https://doi.org/10.1590/1413-81232020261...
This demonstrates the economic vulnerability of caregivers, which intensifies the degree of stress and burden3131. Rangel RL, Santos LB, Santana ES, Marinho MS, Chaves RN, Reis LA. Evaluation of family caregiver overload of elderly with functional dependence. Rev Aten Saúde. 2019;17(60):11-8. https://doi.org/10.13037/ras.vol17n60.5564
https://doi.org/10.13037/ras.vol17n60.55...
,3232. Li J. Predictors of family caregiver burden in Shanghai. J Appl Gerontol. 2021;40(7):703-12. https://doi.org/10.1177/0733464820951029
https://doi.org/10.1177/0733464820951029...
.

Older caregivers in a situation of family dysfunction were more likely to have a higher burden score. Satisfaction with family functioning is closely related to social support, as the support that caregivers receive can be important to coping with stressful situations related to providing care, which can lead to higher levels of burden3333. Lins AES, Rosas C, Neri AL. Satisfaction with family relations and support according to elderly persons caring for elderly relatives. Rev Bras Geriatr Gerontol. 2018;21(3):330-52. https://doi.org/10.1590/1981-22562018021.170177
https://doi.org/10.1590/1981-22562018021...
. Studies have shown that poor quality in terms of social support – whether formal or informal – is associated with a higher level of perceived burden in family caregivers3434. Lindt N, van Berkel J, Mulder BC. Determinants of overburdening among informal carers: a systematic review. BMC Geriatr. 2020;20(1):304. https://doi.org/10.1186/s12877-020-01708-3
https://doi.org/10.1186/s12877-020-01708...
,3535. García-Mochón L, Peña-Longobardo LM, Del Río-Lozano M, Oliva-Moreno J, Larrañaga-Padilla I, García-Calvente MDM. Determinants of burden and satisfaction in informal caregivers: two sides of the same coin? The CUIDAR-SE study. Int J Environ Res Public Health. 2019;16(22):4378. https://doi.org/10.3390/ijerph16224378
https://doi.org/10.3390/ijerph16224378...
. Moreover, good family functioning assists in the maintenance of the health and well-being of older people who provide care for dependent family members3535. García-Mochón L, Peña-Longobardo LM, Del Río-Lozano M, Oliva-Moreno J, Larrañaga-Padilla I, García-Calvente MDM. Determinants of burden and satisfaction in informal caregivers: two sides of the same coin? The CUIDAR-SE study. Int J Environ Res Public Health. 2019;16(22):4378. https://doi.org/10.3390/ijerph16224378
https://doi.org/10.3390/ijerph16224378...
.

Regarding clinical and psychosocial characteristics, difficulty sleeping, reports of pain, multimorbidity, perceived stress, depressive symptoms, and frailty were associated with a greater perception of burden. Care-related burden can have long-term negative effects on the physical, emotional, social, and financial state of informal caregivers33. Bianchi M, Flesch LD, Alves EVC, Batistoni SST, Neri AL. Zarit burden interview psychometric indicators applied in older people caregivers of other elderly. Rev Lat Am Enfermagem. 2016;24:e2835. https://doi.org/10.1590/1518-8345.1379.2835
https://doi.org/10.1590/1518-8345.1379.2...
,3434. Lindt N, van Berkel J, Mulder BC. Determinants of overburdening among informal carers: a systematic review. BMC Geriatr. 2020;20(1):304. https://doi.org/10.1186/s12877-020-01708-3
https://doi.org/10.1186/s12877-020-01708...
,3636. Pavarini SCI, Bregola AG, Luchesi BM, Oliveira D, Orlandi FS, Moura FG, et al. Social and health-related predictors of family function in older spousal caregivers: a cross-sectional study. Dement Neuropsychol. 2020;14(4):372-8. https://doi.org/10.1590/1980-57642020dn14-040007
https://doi.org/10.1590/1980-57642020dn1...
. Studies have shown associations between burden and psychological suffering, including stress and depression22. Ottaviani AC, Brigola AG, Terassi M, Luchesi BM, Souza EN, Oliveira NA, et al. Comparison of cognitive performance and aspects of the care context in elderly caregivers in Brazil: a follow-up study. Dement Neuropsychol. 2020;14(2):159-64. https://doi.org/10.1590/1980-57642020dn14-020009
https://doi.org/10.1590/1980-57642020dn1...
,1515. Xiong C, Biscardi M, Astell A, Nalder E, Cameron JI, Mihailidis A, et al. Sex and gender differences in caregiving burden experienced by family caregivers of persons with dementia: a systematic review. PLoS One. 2020;15(4):e0231848. https://doi.org/10.1371/journal.pone.0231848
https://doi.org/10.1371/journal.pone.023...
, as well as physical conditions, such as diabetes, hypertension, and arthritis3737. Kürten L, Dietzel N, Kolominsky-Rabas PL, Graessel E. Predictors of the one-year-change in depressiveness in informal caregivers of community-dwelling people with dementia. BMC Psychiatry. 2021;21(1):177. https://doi.org/10.1186/s12888-021-03164-8
https://doi.org/10.1186/s12888-021-03164...
, and a negative impact on subjective well-being3838. Jacob L, Oh H, Shin J, Haro JM, Vancampfort D, Stubbs B, et al. Informal caregiving, chronic physical conditions, and physical multimorbidity in 48 low- and middle-income countries. J Gerontol A Biol Sci Med Sci. 2020;75(8):1572-8. https://doi.org/10.1093/gerona/glaa017
https://doi.org/10.1093/gerona/glaa017...
. Specifically, depression and a negative impact on physical health are highly prevalent among of caregivers, with an interrupted sleep pattern, pain, and the early transition to frailty syndrome3939. Verbakel E, Metzelthin SF, Kempen GIJM. Caregiving to older adults: determinants of informal caregivers’ subjective well-being and formal and informal support as alleviating conditions. J Gerontol B Psychol Sci Soc Sci. 2018;73(6):1099-111. https://doi.org/10.1093/geronb/gbw047
https://doi.org/10.1093/geronb/gbw047...
,4040. Alves EVC, Flesch LD, Cachioni M, Neri AL, Batistoni SST. The double vulnerability of elderly caregivers: multimorbidity and perceived burden and their associations with frailty. Rev Bras Geriatr Gerontol. 2018;21(3):301-11. https://doi.org/10.1590/1981-22562018021.180050
https://doi.org/10.1590/1981-22562018021...
.

The occurrence and intensity of these effects on health differ considerably among subgroups of caregivers. Women, married caregivers, and those who provide intensive care seem to have more negative effects on their own health related to providing care22. Ottaviani AC, Brigola AG, Terassi M, Luchesi BM, Souza EN, Oliveira NA, et al. Comparison of cognitive performance and aspects of the care context in elderly caregivers in Brazil: a follow-up study. Dement Neuropsychol. 2020;14(2):159-64. https://doi.org/10.1590/1980-57642020dn14-020009
https://doi.org/10.1590/1980-57642020dn1...
,3636. Pavarini SCI, Bregola AG, Luchesi BM, Oliveira D, Orlandi FS, Moura FG, et al. Social and health-related predictors of family function in older spousal caregivers: a cross-sectional study. Dement Neuropsychol. 2020;14(4):372-8. https://doi.org/10.1590/1980-57642020dn14-040007
https://doi.org/10.1590/1980-57642020dn1...
. Such individuals predominated in the sample of the present study. It is also possible that caregivers neglect their own health, as their health problems may seem less important compared to those of the care recipient3838. Jacob L, Oh H, Shin J, Haro JM, Vancampfort D, Stubbs B, et al. Informal caregiving, chronic physical conditions, and physical multimorbidity in 48 low- and middle-income countries. J Gerontol A Biol Sci Med Sci. 2020;75(8):1572-8. https://doi.org/10.1093/gerona/glaa017
https://doi.org/10.1093/gerona/glaa017...
. Caregivers may not have enough time or energy to attend appointments at health care services due to the high care demand and absence of support. Moreover, the capacity to provide adequate care to dependent older adults is negatively affected by poor physical and mental health on the part of caregivers4141. Mendes PN, Figueiredo MLF, Santos AMR, Fernandes MA, Fonseca RSB. Physical, emotional and social burden of elderly patients’ informal caregivers. Acta Paul Enferm. 2019;32(1):87-94. https://doi.org/10.1590/1982-0194201900012
https://doi.org/10.1590/1982-01942019000...
.

Poor functional and cognitive performance of the care recipients were external factors associated with the increase in caregiver burden. According to the literature, needs with regard to activities of daily living and low cognitive performance in dependent older people are the strongest predictors of perceived caregiver burden4242. Riffin C, Van Ness PH, Wolff JL, Fried T. Multifactorial examination of caregiver burden in a national sample of family and unpaid caregivers. J Am Geriatr Soc. 2019;67(2):277-83. https://doi.org/10.1111/jgs.15664
https://doi.org/10.1111/jgs.15664...
,4343. Rodríguez-González AM, Rodríguez-Míguez E. A meta-analysis of the association between caregiver burden and the dependent’s illness. J Women Aging. 2020;32(2):220-35. https://doi.org/10.1080/08952841.2019.1700728
https://doi.org/10.1080/08952841.2019.17...
,4444. Ruisoto P, Ramírez M, Paladines-Costa B, Vaca S, Clemente-Suárez VJ. Predicting caregiver burden in informal caregivers for the elderly in Ecuador. Int J Environ Res Public Health. 2020;17(19):7338. https://doi.org/10.3390/ijerph17197338
https://doi.org/10.3390/ijerph17197338...
. Specific conditions, such as dementia and cognitive impairment, also increase the degree of caregiver burden4545. Chan CY, Cheung G, Martinez-Ruiz A, Chau PYK, Wang K, Yeoh EK, et al. Caregiving burnout of community-dwelling people with dementia in Hong Kong and New Zealand: a cross-sectional study. BMC Geriatr. 2021;21(1):261. https://doi.org/10.1186/s12877-021-02153-6
https://doi.org/10.1186/s12877-021-02153...
.

A systematic review performed to synthesize determinants of burden among informal caregivers found that longer care duration and a greater degree of dependence of the care recipient were the strongest predictors of greater perceived burden. Besides physical dependence, the mental state of the care recipient in terms of behavioral problems and cognitive capacity were also determinants of the level of dependence and positively related to the degree of caregiver burden3434. Lindt N, van Berkel J, Mulder BC. Determinants of overburdening among informal carers: a systematic review. BMC Geriatr. 2020;20(1):304. https://doi.org/10.1186/s12877-020-01708-3
https://doi.org/10.1186/s12877-020-01708...
.

Depressive symptoms constitute a potential variable to address in interventions directed at caregivers of older people that could have an effect on the subjective perception of care-related burden4646. Zhao X, Liu H, Fang B, Zhang Q, Ding H, Li T. Continuous participation in social activities as a protective factor against depressive symptoms among older adults who started high-intensity spousal caregiving: findings from the China health and retirement longitudinal survey. Aging Ment Health. 2021;25(10):1821-9. https://doi.org/10.1080/13607863.2020.1822283
https://doi.org/10.1080/13607863.2020.18...
. A study with caregivers (>18 years of age) of older adults with Alzheimer’s disease found that depressive symptoms were among the variables that exerted a mediating effect on the association between caregiver burden and neuropsychiatric symptoms, such that depressive symptoms may constitute an explanatory variable to understanding the subjective perception of burden4747. Pinyopornpanish M, Pinyopornpanish K, Soontornpun A, Tanprawate S, Nadsasarn A, Wongpakaran N, et al. Perceived stress and depressive symptoms not neuropsychiatric symptoms predict caregiver burden in Alzheimer’s disease: a cross-sectional study. BMC Geriatr. 2021;21(1):180. https://doi.org/10.1186/s12877-021-02136-7
https://doi.org/10.1186/s12877-021-02136...
. The association between depressive symptoms and caregiver burden in the present study is in agreement with findings reported in studies involving caregivers of older adults in general1919. Lino VTS, Pereira SRM, Camacho LAB, Ribeiro Filho ST, Buksman S. Cross-cultural adaptation of the Independence in Activities of Daily Living Index (Katz Index). Cad Saúde Pública. 2008;24(1):103-12. https://doi.org/10.1590/S0102-311X2008000100010
https://doi.org/10.1590/S0102-311X200800...
2121. Mioshi E, Dawson K, Mitchell J, Arnold R, Hodges JR. The Addenbrooke’s Cognitive Examination Revised (ACE-R): a brief cognitive test battery for dementia screening. Int J Geriatr Psychiatry. 2006;21(11):1078-85. https://doi.org/10.1002/gps.1610
https://doi.org/10.1002/gps.1610...
,4747. Pinyopornpanish M, Pinyopornpanish K, Soontornpun A, Tanprawate S, Nadsasarn A, Wongpakaran N, et al. Perceived stress and depressive symptoms not neuropsychiatric symptoms predict caregiver burden in Alzheimer’s disease: a cross-sectional study. BMC Geriatr. 2021;21(1):180. https://doi.org/10.1186/s12877-021-02136-7
https://doi.org/10.1186/s12877-021-02136...
as well as older caregivers of older adults4848. Melo LA, Jessus ITM, Orlandi FS, Gomes GAO, Zazzetta MS, Brito TRP, et al. Frailty, depression, and quality of life: a study with elderly caregivers. Rev Bras Enferm. 2020;73(Suppl 3):e20180947. https://doi.org/10.1590/0034-7167-2018-0947
https://doi.org/10.1590/0034-7167-2018-0...
.

The findings of the present study have potential implications for the development of social policies or recommendations to prevent and reduce the occurrence of burden in older caregivers of older adults as well as the establishment of specific interventions, considering risk factors for burden resulting from informal care provided to older adults and variables that can minimize such burden. This is important, as providing care often results in health problems and a reduction in quality of life. However, the results of this study should be considered with caution due to the cross-sectional design and use of a convenience sample, which limit the inference of causality and the generalizability of the results. Moreover, the explanatory capacity of the models used in this study was low to moderate, even after including a substantial number of potentially explanatory variables. This demonstrates the possibility of numerous subjective factors in this process that cannot be quantified or explained using a quantitative approach.

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  • Funding: Conselho Nacional de Desenvolvimento Científico e Tecnológico (CNPq) [grant number 304068/2015-6] and Coordenação de Aperfeiçoamento Pessoal de Nível Superior (CAPES) [grant number 001].

Publication Dates

  • Publication in this collection
    14 Apr 2023
  • Date of issue
    2023

History

  • Received
    11 Apr 2022
  • Reviewed
    04 July 2022
  • Accepted
    01 Sept 2022
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E-mail: revistadementia@abneuro.org.br | demneuropsy@uol.com.br