Abstract

This paper aims to identify sociodemographic and care characteristics of dependent older adults, formal and family caregivers in municipalities from different Brazilian regions. A cross-sectional study was carried out with a sample of 175 people, of whom 64 were older adults, 27 formal caregivers, and 84 family caregivers. Semi-structured interviews were conducted with specific questions for each group on the theme of care and dependence. Most older adults were female, aged 80 years or older, with low education and have been dependent for four years or more. Older adults reported feelings of loneliness, pointed out difficulties in medical care, and 29% had only access to Primary Health Care actions. Inequalities, burden, illnesses, and social problems were found among family caregivers. Black females with no formal employment, little or no training for the function, and low remuneration predominated among formal caregivers, and care was associated with domestic chores. We can conclude that gender and race inequalities persist in the care of dependent older adults, and we observed that the rigid social roles assigned to men and women in Brazil persist in the family and work dynamics in caring for the dependent older adults.

Key words:
Aging; Frail older adult; Caregivers; Elderly health

Introduction

In recent decades, population aging has been marked by increased life expectancy and reduced birth and death rates in most countries in the world. An increased number of older adults aged 80 and over has been observed, which is a vulnerable stage from the social and physical and mental health standpoint, and loss of autonomy and increased dependence are common¹1 Freedman A, Nicolle J. Social isolation and loneliness: the new geriatric giants Approach for primary care. Can Fam Physician 2020; 66(3):176-182..

Dependence is the functional incapacity of older adults to perform Basic Activities of Daily Living (BADL), such as eating, dressing, and bathing²2 Del Duca GF, Silva MC, Halall PC. Incapacidade funcional para atividades básicas e instrumentais da vida diária em idosos. Rev Saude Publica 2009; 43(5):796-805., or the impossibility of performing Instrumental Activities of Daily Living (IADL), such as going to the bank, take the bus, and communicate³3 Alves LC, Leite IC, Machado CJ. Conceituando e mensurando a incapacidade funcional da população idosa: uma revisão de literatura. Cien Saude Colet 2008; 13(4):1199-207.. In this case, older adults require assistance to carry out these tasks and manage their lives⁴4 Klompstra L, Ekdahl AW, Krevers B, Milberg A, Eckerblad J. Factors related to health-related quality of life in older people with multimorbidity and high health care consumption over a two-year period. BMC Geriatr 2019; 19(1):187..

In Latin America, 40% of older adults require long-term care, and this number will triple in the next thirty years⁵5 Organização Pan-americana de Saúde (OPAS). Plano de ação para a saúde da população idosa. Washington: OPAS; 2019.. In 2050, Brazil will have about 77 million care-dependent people, including older adults and children⁶6 Instituto Brasileiro de Geografia e Estatística (IBGE). Características gerais dos moradores 2012-2016. Rio de Janeiro: IBGE; 2017., and only 30% of the municipalities had long-term care institutions in 2009, and most were in the southeastern region of the country⁷7 Camarano AA, organizador. Cuidados de Longa Duração para a População Idosa: um novo risco social a ser assumido? Rio de Janeiro: IPEA; 2010.. Simultaneously, the long-lived and dependent population increases, a shortage of caregivers, professionals, and health services prepared to assist them is observed⁸8 Greenwood N, Pound C, Brearley S, Smith R. A qualitative study of older informal carers' experiences and perceptions of their caring role. Maturitas 2019; (124):1-7..

In Brazil, most caregivers are relatives, women (spouses or daughters) aged 50 or over, and with physical and emotional proximity to older adults. Work is often uninterrupted and solitary, without the support of public protection services and policies for developing this function. They suffer restrictions in their personal lives, generating overload, illness, unemployment, and withdrawal from the social and affective network⁹9 Minayo MCS. Cuidar de quem cuida de idosos dependentes: Por uma política necessária e urgente. Cien Saude Colet 2020; 26(1):7-16.^,1010 Carmichael F, Ercolani M. Overlooked and undervalued: the caring contribution of older people. Int J Soc Econ 2014; 41(5):397-419..

In 2002, the caregiver’s role was recognized as an occupation by the Ministry of Labor and Income in Brazil. “Caregiver” was the individual who assisted and promoted well-being, health, food, hygiene, education, culture, and leisure for the dependent person. However, the profession is marked by unstable employment relationships, lack of specific preparation, low wages, and long working hours¹¹11 Lampert CDT, Scortegagna SA, Grzybovski D. Dispositivos legais no trabalho de cuidadores: aplicação em instituições de longa permanência. REAd 2016; 85(3):360-380..

Despite the elderly social protection policies implemented in the country in recent decades, the State’s provision of services is restricted to specific and one-off healthcare actions and assigns to the family the commitment to home long-term care. No specific policy determining the roles of the family and the public service network¹²12 Karsch UM. Idosos dependentes: famílias e cuidadores. Cad Saude Publica 2003; 19(3):861-866. is available, making both older adults and caregivers vulnerable.

The concept of vulnerability contributes to understanding the situation of older adults and their caregivers, as it refers to the guarantee of citizenship of politically frail people from the perspective of human rights, resulting from the combination of individual, social, and pragmatic domains. Individual vulnerability comprises biological, emotional, cognitive, and attitudinal aspects. Social vulnerability is characterized by cultural, social, and economic aspects that determine opportunities for access to goods and services. The programmatic vulnerability refers to the social resources required to protect individuals from risks to their integrity and physical, psychological, and social well-being¹³13 Ayres J, Calazans GJ, Saletti Filho HC, França Júnior I. Risco, vulnerabilidade e práticas de prevenção e promoção da saúde. In: Campos G, Minayo MCS, Akerman M, Drumond Júnior M, Carvalho YM, organizadores. Tratado de Saúde Coletiva. São Paulo: Editora Fiocruz; 2006. p. 375-417..

In this study, a group of people involved in the context of dependence and care for older adults was interviewed to understand first-hand their situation and vulnerabilities. Thus, this study aims to identify the sociodemographic and care characteristics of dependent older adults, family caregivers, and formal caregivers in eight municipalities from different Brazilian regions.

Methods

Study type

This is a cross-sectional, descriptive study carried out in 2019 in eight municipalities located in the five Brazilian regions: Araranguá (SC), Brasília (DF), Fortaleza (CE), Manaus (AM), Porto Alegre (RS), Recife (PE), Rio de Janeiro (RJ), and Teresina (PI). It is nested in a multicenter research that studied the situation of older adults with physical, mental/emotional, cognitive, or social dependence, and focused on supporting the development of a public policy that serves dependent older adults and their caregivers, which was coordinated by the Oswaldo Cruz Foundation in partnership with Brazilian educational institutions¹⁴14 Minayo MCS. Estudo situacional dos idosos dependentes que residem com suas famílias visando subsidiar uma política de atenção e de apoio aos cuidadores. Rio de Janeiro: Fiocruz; 2019. (Projeto de Pesquisa)..

Sample

An intentional sample of 175 people participated in this study, consisting of 64 dependent older adults, 27 formal caregivers, and 84 family caregivers (Table 1). A “dependent older adult” was considered to be someone aged 60 years or more who, due to the reduced or lack of physical or cognitive capacity, required help in performing BADL or IADL, implying the presence of at least one more person for the provision of care¹⁵15 Unión Europea (UE). Consejo de Europa. Recomendación 1591. Retos de la política social en las sociedades europeas que envejecen. Bruselas: Comisión Europea; 2003..

Physical dependence was considered functional, practical, or motor incapacity to perform BADL or IADL, and cognitive dependence was the complete or partial loss of orientation in time, memory, attention, calculation, language, and visual capacity¹⁶16 Brasil. Portaria nº 2.528, de 19 de outubro de 2006. Aprova a Política Nacional de Saúde do Idoso. Diário Oficial da União 2006; 12 dez.. Caregivers were understood as formal (hired) or family members, considered as those who provide assistance or care to older adults in the performance of their daily activities¹⁷17 Bertolucci PH, Brucki SM, Campacci SR, Juliano Y. O Mini Exame do Estado Mental em uma população geral: Impacto da escolaridade. Arq Neuropsiquiatr 1994; 52(1):1-7.. Older adults in Long Term Care Institutions (LTCI) or living alone were excluded because this study aimed to understand the dependent older adult-family caregiver dyad’s situation.

Data collection

For data collection, participants were identified through the Municipal Health Secretariats and the Primary Health Care (PHC) services of each municipality included in the study. Then, the contact and scheduling of interviews with respondents were carried out, and all participants were interviewed in their homes by previously trained professionals.

The data were collected through semi-structured interviews, with items that considered obtaining quantitative and qualitative data, using a script constructed and agreed by a group of researchers from different Brazilian universities. Specific questions were used for each group interviewed and involved the perception of topics related to care and dependence.

The interviews were audio-recorded (with the respondents’ permission) and transcribed. It is noteworthy that the quantitative variables selected for this study were collected from the textual corpus generated by the transcripts performed by the researchers, containing sociodemographic and care information related to care practices and aspects of the world of work.

Variables

The variables were grouped according to each group of research participants:

Dependent older adults:

Sociodemographic characteristics: gender, ethnicity, marital status, age group, number of children and grandchildren, religion, education, with whom they lived, residence adapted to needs, cognition (preserved or impaired capacity to orient in time, memory, attention, calculations, language, and visual capacity), and social interaction (emotional contact with family, friends, neighbors, or others).

Care characteristics: time requiring care, professional caregiver, and monitoring doctor.

Family caregivers:

Sociodemographic characteristics: gender, ethnicity/skin color, and age group;

Care characteristics: the degree of kinship, the reason to be a caregiver, time in the job, alternating care, self-perception about one’s health, and emotional problems (Sadness, stress, tiredness, overload, insomnia, and irritation).

Formal caregivers:

Sociodemographic characteristics: gender, ethnicity/skin color, and age group;

Care and professional characteristics: employment contract, training course, remuneration, length of experience, carrying out other activities in the home where they are working, difficulties experienced at work, feeling for older adults and emotional (Sadness, depression, fatigue, overload, and anxiety) and social (Lack of recognition, freedom and social relationships) problems.

Statistical analysis

The variables were entered and categorized in a database in the Excel software, and coded. Subsequently, the Statistical Package for the Social Sciences (SPSS) program, version 20.0, was used for the statistical analysis, and the variables were presented employing crude and relative frequency.

Research ethics

The Research Ethics Committee of the Oswaldo Cruz Foundation approved the project. All participants signed the Informed Consent Form.

Results

In total, 64 dependent older adults, 84 family caregivers, and 27 formal caregivers in different Brazilian cities were interviewed, establishing a sample of 175 people. Most older adults were women (64.1%), white (56.3%), with low schooling (15.6% were illiterate and 40.6% had incomplete elementary school), and Catholic (71.9%). Most older adults were over 80 years old (54.7%), lived without a partner (68.7%), had children (87.6%), and grandchildren (75%). Of the total, 37.5% lived with their daughter, 31.3% with a partner, and 70.3% in a home adapted to their needs (Table 2).

Of the older adults, 23.1% had been requiring care for four years or more, 87.7% had no professional caregiver, and the PHC doctor monitored 29.2%. Most reported feeling uneasy about their situation, had a preserved cognition, but did not have social relationships (Table 3).

Table 4 shows that most family caregivers were female (84.5%), white (40.5%), and were between 40 and 59 years of age (52.4%). Those who provided care to older adults were most often the “daughters”, who reported being in this role precisely because they were “daughters” or because “they did not have anyone else to provide care”. Most caregivers have provided care to older adults for over two years and did not share their work with other people. Most reported that they have been experiencing illness (60.7%), emotional problems (75.0%), social problems (75.0%), and reported that the family is the leading support network that helps in caring for older adults (48.8%) in the exercise of this activity.

Table 5 shows the characteristics of formal caregivers. Most were women (92.6%), black (63.0%), were between 40 and 59 years old (74.1%), did not have an employment contract (74.1%), never took a training course for the function (77.8%), received approximately one minimum wage (≤ R$ 1,000.00), and had been in the job for less than one year (59.3%). In this population, 74.1% performed other activities at the older adult’s residence, and 55.6% faced difficulties at work. Most said they liked what they did, did not suffer from emotional problems, and were supported by relatives of older adults and other caregivers.

Discussion

This study identified sociodemographic and care characteristics that indicate vulnerabilities in dependent older adults, family, and formal caregivers. We observed that the respondents are affected by individual, social and programmatic vulnerabilities¹³13 Ayres J, Calazans GJ, Saletti Filho HC, França Júnior I. Risco, vulnerabilidade e práticas de prevenção e promoção da saúde. In: Campos G, Minayo MCS, Akerman M, Drumond Júnior M, Carvalho YM, organizadores. Tratado de Saúde Coletiva. São Paulo: Editora Fiocruz; 2006. p. 375-417., involving aspects that suggest poor living and health conditions.

Concerning individual and social vulnerabilities, most older adults are female, aged over 80 years, and with low schooling. These women have required care for a long time (four years or more) and reported depression, sadness, and loneliness. While they have children and grandchildren, they complain that many do not visit them frequently. Also, they have no professional caregiver and no regular health care.

These data corroborate Brazil’s demographic projection, which points to a higher proportion of women among older adults due to the different mortality by gender, which prematurely affects the male population¹⁸18 Batista AS, Jaccoud LB, Aquino L, El-Moor PD. Envelhecimento e dependência: desafios para a organização da proteção social. Brasília: MPS, SPPS; 2008.^,1919 Instituto Brasileiro de Geografia e Estatística (IBGE). Tábua completa de mortalidade para o Brasil 2018: Breve análise da evolução da mortalidade no Brasil. Rio de Janeiro: IBGE; 2019.. In families, besides being the group suffering the most from addiction²⁰20 Auais M, Ahmed T, Alvarado B, Phillips SP, Rosendaal N, Curcio CL, Fernandes J, Guralnik J, Zunzunegui MV. Gender differences in four-year incidence of self-reported and performance-based functional disability: The International Mobility in Aging Study. Arch Gerontol Geriatr 2019; 82:266-272.

21 Guerra RO, Alvarado BE, Zunzunegui MV. Life course, gender and ethnic inequalities in functional disability in a Brazilian urban elderly population. Aging Clin Exp Res 2008; 20(1):53-61.^-2222 Lima-Costa MF, Peixoto SV, Malta DC, Szwarcwald CL, Mambrini JVM. Informal and paid care for Brazilian older adults (National Health Survey, 2013). Rev Saude Publica 2017; 51(Supl. 1):6s., they are also characterized by the care they provide to other older adults²³23 Giacomin KC, Uchoa E, Lima-costa MFF. Projeto Bambuí: a experiência do cuidado domiciliário por esposas de idosos dependentes. Cad Saude Publica 2005; 21(5):1509-1518.

24 Diniz MAA, Melo BRS, Neri KH, Casemiro FG, Figueiredo LC, Gaioli CCLO, Gratão ACM. Estudo comparativo entre cuidadores formais e informais de idosos. Cien Saude Colet 2018; 23(11):3789-3798.^-2525 Duarte YAO, Berzins MAVS, Giacomin KC. Política Nacional do Idoso: as lacunas da lei e a questão dos cuidadores. In: Alcântara AO, Camarano AA, Giacomin KC, organizadores. Política Nacional do Idoso: velhas e novas questões. Rio de Janeiro: Ipea; 2016. p. 457-478.. Worth remembering is that people aged 80 and over is increasing in Brazil. It is the one that requires a higher number of caregivers¹⁴14 Minayo MCS. Estudo situacional dos idosos dependentes que residem com suas famílias visando subsidiar uma política de atenção e de apoio aos cuidadores. Rio de Janeiro: Fiocruz; 2019. (Projeto de Pesquisa). since it is the most vulnerable to several types of dependence.

Studies point out that the low level of education and the worst socioeconomic conditions of older adults are associated with the early loss of physical and functional capacity, as these people tend to accumulate more diseases throughout their lives, performed unhealthy work activities, have harmful lifestyle habits, and lower access to health services²⁶26 Minayo MCS. O imperativo de cuidar da pessoa idosa dependente. Cien Saude Colet 2019; 24(1):247-252.

27 Melzer D, Izmirlian G, Leveille SG, Guralnik JM. Educational differences in the prevalence of mobility disability in old age: the dynamics of incidence, mortality, and recovery. J Gerontol B Psychol Sci Soc Sci 2001; 56(5):294-301.

28 Singh-Manoux A, Marmot M. Role of socialization in explaining social inequalities in health. Soc Sci Med 2005; 60(9):2129-2133.^-2929 Lima-Costa MF, Oliveira C, Macinko J, Marmot M. Socioeconomic inequalities in health in older adults in Brazil and England. Am J Public Health 2012; 102(8):1535-1541.. Furthermore, they face greater difficulty in receiving help and are an extremely vulnerable group²⁹29 Lima-Costa MF, Oliveira C, Macinko J, Marmot M. Socioeconomic inequalities in health in older adults in Brazil and England. Am J Public Health 2012; 102(8):1535-1541.^,3030 Lima-costa M, Mambrini JVM, Peixoto SV. Socioeconomic inequalities in activities of daily living limitations and in the provision of informal and formal care for noninstitutionalized older Brazilians: National Health Survey, 2013. Int J Equity Health 2016; 15(1):137..

The loneliness and isolation experienced by older adults point to losses in social and family life and, according to Santini et al.³¹31 Santini ZI, Jose PE, Cornwell EY, Koyanagi A, Nielsen L, Hinrichsen C, Meilstrup C, Madsen KR, Koushede V. Social disconnectedness, perceived isolation, and symptoms of depression and anxiety among older Americans (NSHAP):a longitudinal mediation analysis. Lancet Public Health 2020; 5(1):e62-e70., can cause emotional and psychological problems, especially depression. These issues appear in the study as frequent complaints and indicate the need for mental health care to increase their social bonds and address death and terminality³²32 Oliveira EB, Bozzetti MC, Hauser L, Duncan BB, Harzheim E. Avaliação da qualidade do cuidado a idosos nos serviços da rede pública de atenção primária à saúde de Porto Alegre, Brasil. Rev Bras Med Fam Comunidade 2013; 8(29):264-273.. The social protection network consists of people who are close and can enhance or reduce vulnerabilities⁹9 Minayo MCS. Cuidar de quem cuida de idosos dependentes: Por uma política necessária e urgente. Cien Saude Colet 2020; 26(1):7-16..

While older adults interviewed in this research have a high number of children, grandchildren, and can count on the presence of their spouse or caregiver, many feel alone. This paradox may result from changes and family dynamics marked by the coexistence of great-grandchildren, grandchildren, and children in the same residence, while bonds and solidarity are lost³³33 Camarano AA. Quanto custa cuidar da população idosa dependente e quem paga por isto? In: Camarano AA, organizador. Novo regime demográfico: uma nova relação entre população e desenvolvimento? Rio de Janeiro: Ipea; 2014. p. 605-623..

The programmatic vulnerability found in this study refers to the fact that many older adults do not have medical care, and only 29% reported access to PHC care, which reinforces the hypothesis about the need for health services to review their care practices to face the challenges of multimorbidity and the aging process needs. Strategies to promote access, reduce care fragmentation, and value and promote PHC skills to improve care are required, and, based on that, to foster a new organization of health care networks³²32 Oliveira EB, Bozzetti MC, Hauser L, Duncan BB, Harzheim E. Avaliação da qualidade do cuidado a idosos nos serviços da rede pública de atenção primária à saúde de Porto Alegre, Brasil. Rev Bras Med Fam Comunidade 2013; 8(29):264-273.^,3434 Melo LA, Braga LC, Leite FPP, Bittar BF, Oséas JMF, Lima KC. Fatores associados à multimorbidade em idosos: uma revisão integrativa da literatura. Rev. Bras. Geriatr. Gerontol 2019; 22(1):1-11.^,3535 Nunes BP, Batista SRR, BOF DE Andrade F, Souza-junior PRB, Lima-Costa MF, Facchini LA. Multimorbidade em indivíduos com 50 anos ou mais de idade: ELSI-Brasil. Rev Saude Publica 2018; 52(2):1-12.. There is no solution: the number of older adults will increase, and it is crucial to ensure adequate and qualified care for this population.

Regarding family caregivers, we identified characteristics that indicate individual, emotional, and social vulnerabilities. This group’s living conditions denote the deficient role of caregivers, marked by inequalities, overloads, illnesses, and various problems. Most are women, mainly daughters and spouses, corroborating other Brazilian studies, according to which daughters are usually the person providing care, which affects their economic and financial life, as it impoverishes them (since it is not a paid activity), causes overload due to uninterrupted work, increases health risks, and social isolation¹⁴14 Minayo MCS. Estudo situacional dos idosos dependentes que residem com suas famílias visando subsidiar uma política de atenção e de apoio aos cuidadores. Rio de Janeiro: Fiocruz; 2019. (Projeto de Pesquisa).^,2323 Giacomin KC, Uchoa E, Lima-costa MFF. Projeto Bambuí: a experiência do cuidado domiciliário por esposas de idosos dependentes. Cad Saude Publica 2005; 21(5):1509-1518.^,3636 Giacomin KC, Duarte YAO, Camarano AA, Nunes DP, Fernandes D. Cuidado e limitações funcionais em atividades cotidianas - ELSI-Brasil. Rev Saude Publica 2018; 52(2):1-9.. Many are also older, long-lived women, which sets up a context for older adults taking care of their peers.

While some women interviewed affirm that they are supported by relatives in caring for their dependent relatives, another part affirms not having social networks. The network and social support are essential measures for coping with the problems of both older adults and caregivers¹⁰10 Carmichael F, Ercolani M. Overlooked and undervalued: the caring contribution of older people. Int J Soc Econ 2014; 41(5):397-419..

Family care exercised mainly by women symbolizes the gender inequalities present in society, historically set by asymmetric intergender power relationships, whose activity of caring in the private sphere has been predominantly female. In this research, part of the respondents revealed that the condition of “being a daughter” was decisive for assuming the role of caregiver, which affects their personal, professional, social, and affective lives, impacting society as a whole. Despite rearranged family schemes and women’s social role, the population aging process is not accompanied by changes in the gender distribution of care work, except in exceptional cases, especially in the family context³³33 Camarano AA. Quanto custa cuidar da população idosa dependente e quem paga por isto? In: Camarano AA, organizador. Novo regime demográfico: uma nova relação entre população e desenvolvimento? Rio de Janeiro: Ipea; 2014. p. 605-623..

In most cases, there was a lack of alternating care, as if the family once and for all provided care to a single person who, on the one hand, had the emotional comfort of assisting their loved one, but on the other, was burdened by work overload and loss of social life and, sometimes, employment²⁴24 Diniz MAA, Melo BRS, Neri KH, Casemiro FG, Figueiredo LC, Gaioli CCLO, Gratão ACM. Estudo comparativo entre cuidadores formais e informais de idosos. Cien Saude Colet 2018; 23(11):3789-3798.^,3636 Giacomin KC, Duarte YAO, Camarano AA, Nunes DP, Fernandes D. Cuidado e limitações funcionais em atividades cotidianas - ELSI-Brasil. Rev Saude Publica 2018; 52(2):1-9.. Several scholars have shown that these people are also more susceptible to mental health problems, insofar as the time spent on elderly care is long and uninterrupted¹²12 Karsch UM. Idosos dependentes: famílias e cuidadores. Cad Saude Publica 2003; 19(3):861-866., they often sleep poorly and stay away from social life³⁷37 Nascimento HG, Figueiredo AE. Demência, familiares cuidadores e serviços de saúde: o cuidado de si e do outro. Cien Saude Colet 2019; 24(4):1381-1392..

Caregivers’ health care is crucial to reduce the risk factors that they (mostly women) incur in their activity. In this study, the presence of a professional caregiver was small and inferior compared to family caregivers. This data reinforces the extent to which family and informal care predominates with older adults, corroborating other Brazilian studies²³23 Giacomin KC, Uchoa E, Lima-costa MFF. Projeto Bambuí: a experiência do cuidado domiciliário por esposas de idosos dependentes. Cad Saude Publica 2005; 21(5):1509-1518.^,2424 Diniz MAA, Melo BRS, Neri KH, Casemiro FG, Figueiredo LC, Gaioli CCLO, Gratão ACM. Estudo comparativo entre cuidadores formais e informais de idosos. Cien Saude Colet 2018; 23(11):3789-3798.^,3636 Giacomin KC, Duarte YAO, Camarano AA, Nunes DP, Fernandes D. Cuidado e limitações funcionais em atividades cotidianas - ELSI-Brasil. Rev Saude Publica 2018; 52(2):1-9., and requires support from public services.

The characteristics of formal caregivers also suggest social vulnerabilities, mainly related to the world of work. Most were black females without formal employment, with little or no professional practice training, and received low pay. Besides the unstable working conditions, most formal caregivers accumulated other activities in the residence where they cared for older adults, such as cooking, cleaning the house, and taking care of other relatives.

Among the vulnerabilities of the formal caregivers participating in this study are the low-skilled, predominantly black workforce, and, in most cases, without a formal employment contract and labor guarantees. Black women’s participation with low schooling in the labor market reflects the intersection between inequalities of gender, ethnicity, and social class in society. They are the most disadvantaged and vulnerable social group, since capitalist, patriarchal, and racist regimes prevent them from obtaining better incomes and jobs, and are overrepresented in less prestigious occupations³⁸38 Lima M, Rios F, França D. Articulando gênero e raça: a participação das mulheres negras no mercado de trabalho (1995-2009). In: Marcondes MM, Pinheiro L, Queiroz C, Querino AC, Valverde D, organiadores. Dossiê mulheres negras: retrato das condições de vida das mulheres negras no Brasil. Brasília: Ipea; 2013. p. 53-80..

In Brazil, blacks’ schooling rates are low, and many hold poor, low-pay domestic jobs compared to white people³⁹39 Instituto de Pesquisa Econômica Aplicada (IPEA). Situação social da população negra por estado. Brasília: Ipea; 2014.. The lack of a formal employment contract and training for the profession’s exercise highlights the lack of public and social policies that ensure the qualification of formal caregivers³⁶36 Giacomin KC, Duarte YAO, Camarano AA, Nunes DP, Fernandes D. Cuidado e limitações funcionais em atividades cotidianas - ELSI-Brasil. Rev Saude Publica 2018; 52(2):1-9.. This situation occurs despite government initiatives, such as the National Program for Access to Technical Education and Employment (Pronatec), which offers technical courses for older caregivers. However, if well trained, these people would demand better wages and formal employment, which, by the way, is already done in cases where caregivers are organized into cooperatives or small businesses.

Although it addresses fundamental aspects of the dependent-caregiver elderly dyad, this study has some limitations. Data collection is eminently qualitative, the sample consists of a small number of people, and there were some non-answers to the interview questions. However, the results identify situations that are corroborated by many other national and international surveys cited here.

Conclusion

The sociodemographic and care characteristics of a sample of older adults and formal and family caregivers from different Brazilian municipalities identified in this investigation represent individual, social, and programmatic vulnerabilities.

The study identified weaknesses in older adults resulting from the situation of dependence. Furthermore, gender and race inequalities were observed in care for older adults, showing the rigid social roles attributed to men and women according to their skin color in Brazilian society. In the family sphere, support networks are relevant to the topic studied, mainly to prevent emotional and social problems. As for formal caregivers, there is a need for a valuation and qualification policy, contributing to the profession’s formalization.

The data shown are from a sample of older adults and caregivers, and cannot be generalized or representative of Brazilian society. However, they can contribute to the creation, development, and implementation of governmental and social strategies to improve and expand support networks and the regulation of an appropriate policy that addresses dependence and the exercise of care.

References

Publication Dates

History