Patrick Alexander Wachholz¹, Ruth Caldeira de Melo², Paulo José Fortes Villas Boas¹, Marisa Accioly R.C. Domingues², Karla C. Giacomin³

¹Faculdade de Medicina de Botucatu, Universidade Estadual Paulista (Unesp), Botucatu – SP, Brazil

²Escola de Artes, Ciências e Humanidades, Universidade de São Paulo (USP), São Paulo – SP, Brazil

³Núcleo de Estudos em Saúde Pública e Envelhecimento, Fundação Oswaldo Cruz – Belo Horizonte (MG), Brazil

To date, Brazil does not have an organized Long-Term Care (LTC) system. Community-based LTC mainly relies on family and other informal care, with minor support from primary healthcare teams. In some locations, a Multidisciplinary Home Care Team monitors more complex cases with help from Home Care Services (Program “Melhor em Casa.)” However, access must be improved, inclusive, and more equitable nationwide [1]. Public Long-Term Care Facilities (LTCF) are scarce; LTC services are fragmented among multiple levels of government and the third sector. They are mainly paid out of pocket by older people and/or their families since there are no compensation or co-payment programs for LTC costs [3].

LTCFs are formally considered social care units despite being commonly inspected as socio-sanitary facilities, as they usually are home to older adults with complex comorbidities and diverse functional and cognitive impairments. The lack of information and monitoring of LTCs services hampers an accurate comprehension of the country’s demands of the LTC sector [4].

By the determination of the current president of the republic (2023-2027), an Interministerial Working Group began (last March 2023) to discuss elaborating a plan for the National Care Policy. The National Policy for Older Persons (1994) and the Brazilian Statute of Older Persons (2003) establish that the family, society, and the State must ensure all citizenship rights to older adults, guaranteeing their participation in the community and defending their dignity, well-being, and right to life. So far, however, LTC coordinated actions still need to be improved, particularly considering governance and system organization.

A simulation cost-analysis study estimated that for a public policy to offer benefits for access to formal care, in which the State would be the public insurer of the risk of dependency and considering the dependent older adults present in each future calendar year, the State’s average annual expenditure flows with the payment of benefits destined to formal care would need to increase from 0.8% of GDP in 2014, to 1.3% of GDP in 2033 [5]. However, the International Labour Organization estimated that public LTC expenditure, as a percentage of GDP between 2006 to 2010, was 0%, with out-of-pocket payments being the primary source of funding for LTC in Brazil, mainly paid from the social benefits received by the older population, and sometimes by out-of-pocket payments from their relatives [2].  There may have been an increase in public spending on LTC, however, more is needed.

Brazil lacks a dedicated LTC financing mechanism. The National Policy for Older Persons (1994) did not define the role of health care and social care in LTC funding, nor the extent of public financing and coverage. Most LTC services include out-of-pocket payments. Some Brazilian municipalities pay for some services, such as supporting families and other informal carers for older adults with lower functional or cognitive abilities. Despite universal coverage of public health and social care systems, accessing LTC services still needs to be regulated and funded. Most private insurance companies only cover the costs of outpatient services, home care, and in-hospital stay, and do not cover the costs of residential LTC.

For now, the federal government determines regulatory and accreditation responsibilities for LTCFs through the National Health Surveillance Agency and its municipalities’ units under the supervision of state agencies. The Public Prosecutor’s Office (at both the federal and state levels) operates independently from the three levels of government, and its primary function is to uphold justice, including protecting older adults’ rights. In this scope, they carry out inspections in LTCFs, whose objective is “to collaborate in the development of institutional expertise for extrajudicial and pre-procedural surveillance.” Many State Prosecutor’s Offices have actively collaborated to implement improvements in care services provided by LTCFs in the country: during COVID-19, some Prosecutors’ offices led actions that aimed to retrieve SARS-CoV-2 test kits, individual protective equipment, and elaborate strategies for vaccinating LTCF residents and workers, and adopted a nonpunitive and proactive way,  bringing a large number of LTCFs not registered with regulatory agencies closer to public authorities, assisting them with their financial and legal support needs for legalization.

According to the Collegiate Board Resolution of 2021, LTCFs are institutions (governmental or non-governmental) intended for the collective housing of people aged 60 (sixty) years or older, with or without family support. To be legally constituted, they need to present (I) Registered status, (II) Registration of social entity, and (III) Internal Rules.

Most Brazilian older adults live in the community, and the Brazilian state assumes that families will assist and pay for the LTC when needed, without due follow-up by professionals and services, including those from social and healthcare systems. The omission of support from the government to families has been tolerated by Brazilian society as if ageing were a private matter, without considering the costs of care for the families, the care receiver, and the primary caregiver, especially women[7]. Given the lack of public interest in taking over care provision, the private LTCF sector has grown impressively,[4] including reports of many unregulated facilities nationwide. The last national survey in institutional care in Brazil was performed in 2007 and found 3,548 facilities, most not-for-profit and for-profit. Unfortunately, basic information about the Brazilian LTCFs (for example, how many, where they are located, their financing/funding models, and what services and activities they offer their residents) needs to be improved because there is no national minimum dataset for LTCFs.

More prominent and wealthier cities have developed initiatives to become friendlier to older adults, including adaptations of accessibility to public buildings, transportation, and provision of recreational services and devices and initiatives to ensure better social and health care. Regulation has advanced in the past few years, considering the need to implement home care, daycare centers, rehabilitation, and support for informal carers. Part of the workforce available in the public sector units directly involves students and interns of university and academic institutions. Most providers, however, belong to the for-profit sector, their services are purchased directly by older people and their families, paid out of their own pocket. Some non-profit providers depend on a Certificate of Charitable Social Assistance Entity (CEBAS, acronym in Portuguese for ‘Certificado de Entidade Beneficente de Assistência Social’) to provide services and activities. This is a certificate granted by the Federal Government, through the Ministries of Education, Social and Agrarian Development and Health, to legal entities governed by private law, non-profit, recognized as charitable social assistance entities that provide services in the areas of education, social assistance or health, so that these entities benefit from exemptions and social contributions, such as the employer’s share of the social security contribution on the payroll; the Social Contribution on Net Profit; among others.

The last national survey of institutional care in Brazil dates from 2007 and found 3,548 facilities, most of them private (both not-for-profit and for-profit) [8]. Using secondary data, a descriptive observational study estimated over 7,000 LTCFs in the country’s 27 Federation Units; however, out of the 5,570 Brazilian municipalities, only 36.22% (n=2,018) had at least one LTCF [7].

Brazilian residential care settings are under the umbrella of social care services. However, despite being regulated as collective residential settings, they usually work by adopting a socio-sanitary model, as they house older adults with different levels of functional dependence and frequently have health professionals among their staff. An estimate based on data from the 2000 and 2010 Brazilian Demographic Census found that around 103,000 older adults lived in LTCFs in the year 2000 (less than 1% of Brazilian older adult population at the time). By 2010, this had increased to 117,000 potentially as a result of a decrease in family sizes.

Although there are for-profit LTCFs akin to European and North American facilities, most of the sector is now constituted by smaller private (for profit and not-for-profit) providers. The number of public care homes has reduced drastically in the last decades [4,9]. The evidence available points to an absence of standardization and intersectoral cooperation in how data on LTCF are collected, shared, and used. In addition, the offer of these services reflects the inequality and heterogeneity of ageing in Brazil, as almost two-thirds of Brazilian municipalities still need alternatives to support older people who demand long-term care that their families cannot supply [7].

Very little is known about how the workforce in the LTC sector, especially in residential care, is constituted. In the home context, care is mostly carried out in an informal, unpaid, or supervised way, mainly by women who are family members of people in situations of functional dependence or severe cognitive impairment. Within the scope of residential care, no survey or census allows the identification of which professionals make up the teams that work in the LTCFs, how they were trained, what their needs and demands are, and what are the retention and turnover rates, which hinders the management of human resources in the sector, as well as impairing the establishment of a culture of person-centered care in these environments. According to the Collegiate Board Resolution of 2021, LTCFs must have a technician in charge with a higher education level and a number of caregivers according to the degree of functional capacity of their residents, but without the obligation that the teams have health professionals in their work teams. This definition reinforces the main social assistance emphasis in LTCFs for older adults, despite the fact that most residents have significant health problems, frailty, and functional/cognitive impairment.

The Brazilian LTC sector’s maturity, preparedness, and organization stage affect the quality of care and the availability of minimal datasets and information on facilities’ characteristics, residents, and workforce [10]. No official databases hold reliable information on the current number of facilities, operating conditions, infrastructure, service provision, or the number and characteristics of their residents, seriously undermining the sector’s organization. Few countries in Latin America and Caribbean (LAC) regions monitor and produce information on LTC provision’s demand, profile, and characterization. In Brazil, data from health systems, health surveillance, and social assistance are generally consolidated separately, making it challenging to integrate this information. The lack of comprehensive data makes the needs of the population demanding such care invisible and makes it challenging to propose public policies. This means that there is a lack of of standardization and intersectoral cooperation in how data on LTCFs are collected, shared, and used [11].

Due to the federal government’s lack of response to the COVID-19 pandemic, initiatives by non-governmental social and scientific organizations, such as the “Frente Nacional de Fortalecimento à ILPI” (in English, National Front for Strengthening Long-Term Care Facilities – NF-LTCF) and the Brazilian Society of Geriatric and Gerontology, helped LTCFs cope with these new challenges by providing robust scientific evidence, information bulletins, protocols for training sessions, reports, etc. The NF-LTCF initiative grew organically, promoting strategic planning, activities, and research to strengthen LTCFs and create public policies about caring for older adults living in LTCFs. The NF-LTCF’s initiatives to mitigate the COVID-19 pandemic, including the successful volunteer movement, have been published and replicated in other Latin American and Caribbean countries [12,13].

In the city of São Paulo (São Paulo State), an interdepartmental ordinance of the Social Assistance and Health departments defines the execution of integrated socio-sanitary services aimed at assisting older people in all services related to LTC, namely, Day Centers for Older Adults, Special Homeless Homes and LTCF under municipal management, including the responsibilities of the Departments involved[14].

An integrated community-based intervention for older people living in deprived neighbourhoods in the city of Belo Horizonte (Programa Maior Cuidado), which provided people with up to 20 hours of support from a family care worker has been found to be highly effective in improving outcomes and is now being expanded to more Brazilian cities with support from the the Federal Ministry of Health[15].

So far, except for initiatives by isolated municipalities, such as the city of São Paulo (São Paulo State) and Belo Horizonte (Minas Gerais State), and the States of Santa Catarina and Espirito Santo, no coordinated federal initiative allows for evaluating and monitoring the performance of the residential or institutional LTC sector. Questions like coverage, equity, effectiveness, quality of care, and resilience of LTC services are unknown and not being consistently evaluated to date. Belo Horizonte has developed a scheme to support care skills for community-based LTC in poor neighborhoods. Care support workers are recruited from local communities and provided with an initial customized training program. They receive a minimum wage and are jointly supervised by health and social assistance center staff.

Evaluations show that, on a modest budget, the Belo Horizonte scheme has improved care outcomes for dependent older people, eased carer burdens, and reduced the unplanned use of health services [16].

Several initiatives were created or consolidated globally to respond to the COVID-19 pandemic, particularly regarding care for the most vulnerable groups. Due to political factors, the situation’s severity was not immediately perceived in Brazil. The impact of the pandemic on the sector was significant not only for the statistics and occurrences of illness and death among residents and workers but also resulted in the identification of LTCFs as a care environment that houses some of the most vulnerable older people. For this reason, they were   prioritized in immunization campaigns against Sars-Cov-2 and influenza and received, for some period, public financial benefits to cover their costs during the pandemic [17-20].

Furthermore, since the first half of 2023, an interministerial commission has begun discussing the development of a National Care Plan [21].

Last March 2023, under the joint coordination of the Ministry of Development and Social Assistance, Family and Fight against Hunger, and the Ministry of Women, an Interministerial Working Group (IWG) composed of 17 federal administration bodies was convened to formulate a diagnosis on the social organization of care in the country (which includes the identification of existing policies, programs, and services related to the offer and needs of care); prepare a proposal for the National Care Policy, indicating its principles, guidelines, and objectives; prepare the proposal for the National Care Plan, which includes (a) the programs and actions of each of the participating bodies and entities, with an indication of deadlines and resources for implementing the proposed measures; (b) the priorities, periodicity, and management, monitoring and evaluation strategies of the Plan’s programs and actions [22].

The National Care Policy will aim to guarantee the rights of both people who need care and those who provide care, with particular attention to gender, race, ethnicity, and territorial inequalities, in addition to promoting the necessary changes for an equal division of labour of care. The initiative is based on the principle that, in Brazil, the provision of care is carried out mainly by women within their families, without receiving social appreciation or remuneration. So far, National Care Plan IWG still needs to address themes related to older adult’s long-term care policy.

Wachholz P.A., Caldeira de Melo R., Fortes Villas Boas P.J., Accioly R.C. Domingues M., Giacomin K.C. (2024) Long-Term Care System Profile: Brazil. Global Observatory of Long-Term Care, Care Policy & Evaluation Centre, London School of Economics and Political Science. https://goltc.org/system-profile/brazil

Frente Nacional de Fortalecimento à ILPI – https://frente-ilpi.com.br/

Horta NC, Boas PV, Carvalho AFS, Torres SVS, Campos GC, Angioletti AC, et al. Brazilian National Front for Strengthening Long-Term Care Facilities for Older People: history and activities. Geriatr Gerontol Aging. 2021;15:e0210064. https://doi.org/10.53886/gga.e0210064

Lacerda TTB, Neves APM, Buarque GLA, Freitas DCCV, Tessarolo MMM, González N, et al. Geospatial panorama of long-term care facilities in Brazil: a portrait of territorial inequalities. Geriatr Gerontol Aging. 2021;15:e0210060. https://doi.org/10.53886/gga.e0210060

Domingues MARC, Wachholz PA, Silva CB, Peres LCS, Chacon PF, Bezerra PCL, et al. Methodological description of the mapping of Brazilian long-term care facilities for older adults. Geriatr Gerontol Aging. 2021;15:e0210049. https://doi.org/10.53886/gga.e0210049

Brasil. RESOLUÇÃO DE DIRETORIA COLEGIADA – RDC Nº 502, DE 27 DE MAIO DE 2021.Available from https://bvsms.saude.gov.br/bvs/saudelegis/anvisa/2020/rdc0502_27_05_2021.pdf (accessed 25 August 2023)

Camarano, AA; Barbosa, P. Instituições de longa permanência para idosos no Brasil : do que se está falando?. Available from https://repositorio.ipea.gov.br/bitstream/11058/9146/1/Institui%c3%a7%c3%b5es%20de%20longa%20perman%c3%aancia.pdf  (accessed 25 August, 2023)

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[7] Lacerda TTB, Neves APM, Buarque GLA, Freitas DCCV, Tessarolo MMM, González N, et al. Geospatial panorama of long-term care facilities in Brazil: a portrait of territorial inequalities. Geriatr Gerontol Aging. 2021;15:e0210060. https://doi.org/10.53886/gga.e0210060

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