Report on the dementia situation in Brazil

 

 

The Dementia care landscape in Brazil: care and support for people living dementia and their families

Executive summary

Dementia is a neuropsychiatric syndrome mainly affecting people over 65 years old, resulting in a gradual cognitive and physical decline that limits the person’s daily activities independently (1). Among the several forms of dementia, Alzheimer’s disease is the most common one.

This executive summary of the full desk review on the Dementia Care Landscape in Brazil (2) carried out as part of the STRiDE project, contextualizes the situation of dementia in Brazil, considering epidemiological data, health services and long-term care, public policies and legislation related to dementia, as well as the challenges related to this condition. This document aims to contribute to more informed decision-making concerning dementia care policies in Brazil.

An estimated 55 million people live with dementia worldwide (1). Up to 2050, there may be an estimate that this number will triple (3). Currently, almost 2 million people in Brazil live with dementia (3). However, there is a need to conduct more studies aiming to ensure more accurate and representative estimates of the country’s dementia population.

Dementia mainly affects women, older people, and those in unfavorable socioeconomic situations (4–6). The condition impacts memory, reasoning, understanding, the ability to perform calculations, and other cognitive skills.

As it is a progressive, incurable condition and a major cause of dependence and disability among older people, people living with dementia need a gradual increase in support and care to carry out activities of daily living as the disease progresses.

In most cases, the person living with dementia has at least one family carer (unpaid) who often gives up their professional and personal life to take on care-related tasks (7). These people generally are women – wives, daughters, and daughters-in-law – with complete elementary education (8). Moreover, family carers often experience physical, emotional, and financial burdens and stress due to a lack of caregiving support.

Dementia has a high financial impact on society, with direct costs (drugs, services, and health products necessary for care) and indirect costs (support services for family carers, costs related to lost productivity and time spent with care). In Brazil, it is estimated that the direct and indirect monthly costs per person living with dementia are on average R$4 thousand, R$6.7 thousand, and R$5.5 thousand, respectively, for the initial, moderate, and advanced stages of dementia. Approximately 83% of these costs are borne exclusively by families (8).

Although dementia is directly or indirectly mentioned as part of specific national public policies for older people (9–13), no national policy prioritizes the management of the disease and the care of the persons living with the condition and their families.

Bill 4,364/2020, currently pending in the Chamber of Deputies, aims to ensure comprehensive care for people living with dementia and their families. Local and regional care initiatives are still incipient but can be observed in the Federal District and the city of São Paulo, for example.

The Family Health Strategy Program stands out for its potential value in the care and support for people living with dementia, from the pre-diagnosis phase to end-of-life. However, there is a need for healthcare professionals to receive greater and better dementia training to identify people living with dementia and their care needs appropriately.

The lack of information about dementia, the lack of access and services, and the stigma related to this condition make it difficult to seek professional help. In Brazil, it is estimated that more than 70% of people living with dementia are not formally diagnosed (14).

Health and long-term care systems are not prepared to properly receive, diagnose, and take care of these people and their families, who also often do not know where or how to get help. In addition, few professionals specialize in older people’s health and are well-trained to manage dementia.

In Brazil, there are practically no organised and well-coordinated dementia care pathways where people with the first symptoms of the condition could be oriented about what professionals and what kind of support to look for. In addition, public information on risk-reduction measures for dementia is still quite insufficient. This situation reduces the possibility of a timely diagnosis, resulting in a late or lack of diagnosis and a lack of subsequent provision of support.

The stigma and discrimination felt by people living with dementia and their family carers are widespread in Brazil. It exists among family and social relationships and as part of professionals and institutional systems. Stigma, among other consequences, produces suffering and exclusion of people living with dementia and their families, preventing them from being seen and treated as rightful citizens in society.

Information and social contact can reduce stigma and discrimination. The better-informed society is about the symptoms and difficulties experienced by people with dementia and the ways to help these people to deal with challenging everyday situations, the less stigma there will be. However, information alone does not reduce stigma. There needs to be a deep involvement of people living with dementia in media, research, service organizations, and policies, as well as other forms of social participation, to value and empower these people.

References 
  1. World Health Organization. Dementia [Internet]. 2021 [cited 2022 Jan 13]. Available from: https://www.who.int/news-room/fact-sheets/detail/dementia
  2. Da Mata F.A.F., Oliveira C., Mateus E., Ferri C.P., Comas-Herrera A., Lorenz-Dant K. (2022)  The dementia care landscape in Brazil: context, systems, policies and services. STRiDE Desk Review. CPEC, London School of Economics and Political Science, London. https://stride-dementia.org/desk-review/?country=brazil
  3. GBD. Estimation of the global prevalence of dementia in 2019 and forecasted prevalence in 2050: an analysis for the Global Burden of Disease Study 2019. Lancet Public Health [Internet]. 2022 Jan 6 [cited 2022 Jan 13];0(0). Available from: https://www.thelancet.com/journals/lanpub/article/PIIS2468-2667(21)00249-8/abstract
  4. Fagundes SD, Silva MT, Thees MFRS, Pereira MG. Prevalence of dementia among elderly Brazilians: a systematic review. Sao Paulo Med J. 2011 Jan 6;129(1):46–50.
  5. Scazufca M, Menezes PR, Vallada HP, Crepaldi AL, Pastor-Valero M, Coutinho LMS, et al. High prevalence of dementia among older adults from poor socioeconomic backgrounds in São Paulo, Brazil. Int Psychogeriatr. 2008 Apr;20(2):394–405.
  6. Scazufca M, Almeida OP, Menezes PR. The role of literacy, occupation and income in dementia prevention: the São Paulo Ageing & Health Study (SPAH). Int Psychogeriatr. 2010 Dec;22(8):1209–15.
  7. Mayston R, Lloyd-Sherlock P, Gallardo S, Wang H, Huang Y, Montes de Oca V, et al. A journey without maps—Understanding the costs of caring for dependent older people in Nigeria, China, Mexico and Peru. Larson BA, editor. PLOS ONE. 2017 Aug 7;12(8):e0182360.
  8. Ferretti C, Sarti FM, Nitrini R, Ferreira FF, Brucki SMD. An assessment of direct and indirect costs of dementia in Brazil. PLoS ONE [Internet]. 2018 [cited 2019 Aug 7];13(3). Available from: https://journals.plos.org/plosone/article/file?id=10.1371/journal.pone.0193209&type=printable
  9. Brazilian Ministry of Health. Orientações Técnicas para a Implementação de Linha de Cuidado para Atenção integral à Saúde da Pessoa Idosa no Sistema Único de Saúde – SUS [Internet]. Ministério da Saúde do Brasil; 2018 [cited 2019 May 25]. Available from: http://bvsms.saude.gov.br/bvs/publicacoes/linha_cuidado_atencao_pessoa_idosa.pdf
  10. Brazilian Ministry of Health. Política Nacional de Saúde da Pessoa Idosa [Internet]. 2006 [cited 2019 May 6]. Available from: http://bvsms.saude.gov.br/bvs/saudelegis/gm/2006/prt2528_19_10_2006.html
  11. Brazilian Ministry of Health. Política Nacional de Atenção Básica [Internet]. 2012 [cited 2019 May 27]. Available from: http://189.28.128.100/dab/docs/publicacoes/geral/pnab.pdf
  12. Brazilian Ministry of Health. PCDT Alzheimer [Internet]. 2017 [cited 2019 May 13]. Available from: http://portalarquivos2.saude.gov.br/images/pdf/2017/dezembro/08/465660-17-10-MINUTA-de-Portaria-Conjunta-PCDT-Alzheimer-27-11-2017—COMPLETA.pdf
  13. Presidency of Republic of Brazil. Estatuto do Idoso [Internet]. National Congress of Brazil’s Information System; 2003 [cited 2019 May 13]. Available from: http://www.planalto.gov.br/ccivil_03/leis/2003/l10.741.htm
  14. Nakamura A, Opaleye D, Tani G, Ferri CP. Dementia underdiagnosis in Brazil. The Lancet. 2015;385(9966):418–9.