DESK REVIEWS | 04.05. Legislation

DESK REVIEW | 04.05. Legislation

Yes, the national laws are described as follows:

  • National Law No. 11.736 establishes the 21 September as the national day of the Alzheimer’s disease, which aims to increase people’s awareness of the condition (Presidency of Republic of Brazil, 2008).
  • National Law No. 5.233 states that people with cognitive impairment, such as Parkinson’s disease, are eligible for keeping their entire salaries as retirement pensions.
  • There is the Ordinance No. 703 that establishes a “Program for Supporting People with Alzheimer’s Disease” (Programa de Assistência aos Portadores da Doença de Alzheimer, Portaria número 703) in the Brazilian Unified Healthcare System (SUS). According to this programme, the Reference Centres for Older People’s Healthcare (belonging to SUS) are responsible for diagnosing, treating, and accompanying people with Alzheimer’s Disease as well as supporting their families and carers (Presidency of Republic of Brazil, 1967). These Reference Centres are hospitals with physical infrastructure, equipment, and human resources adequate to provide healthcare to older people in an integrated way. Besides that, these centres should have, an outpatient clinic specialized in older people, geriatric day hospital (it is a kind of hospital that offers healthcare services to older people who are able to return home at the end of the day), and should provide homecare services of medium complexity for older people. A total of 74 Reference Centres are distributed among the 26 Brazilian federal states and the federal district (Brazilian Ministry of Health, 2002).

In addition, there are many “Law Projects” (Projeto de Lei no Senado or Projeto de Lei, in Portuguese) that are submitted to the federal congress for assessment and vote before becoming legally binding. This process may last years until completion. Some of the law projects are related to dementia. These are:

  • PLS No. 4364 (2020): aims to create The National Policy for Integrated Care for People Living with Alzheimer’s Disease and other Dementias (Brazilian Federal Congress, 2020).
  • PLS No. 30 (2018): aims to allow people living with dementia to manage a Brazilian financial fund (FGTS) at any time, which they would otherwise only be allowed to manage after retirement or under specific circumstances (Brazilian Federal Congress, 2018).
  • PLS No. 61 (2017): people with Alzheimer’s disease to receive income tax payment waiver (Brazilian Federal Congress, 2017).
  • PLS No. 523 (2011): provides subsidised medicine for people with Alzheimer’s disease, Parkinson’s disease, depression, diabetes etc. (Brazilian Federal Congress, 2011b).
  • PLS No. 412 (2011): supports campaigns advising prevention and timely diagnosis of Alzheimer’s disease (Brazilian Federal Congress, 2011a, p. 412).

References:

Brazilian Federal Congress. (2011a). Projeto de Lei do Senado n° 412, de 2011—Pesquisas—Senado Federal. https://www25.senado.leg.br/web/atividade/materias/-/materia/101226

Brazilian Federal Congress. (2011b). Projeto de Lei do Senado n° 523, de 2011—Pesquisas—Senado Federal. https://www25.senado.leg.br/web/atividade/materias/-/materia/101821

Brazilian Federal Congress. (2017). Projeto de Lei do Senado n° 61, de 2017—Pesquisas—Senado Federal. https://www25.senado.leg.br/web/atividade/materias/-/materia/128350

Brazilian Federal Congress. (2018). Projeto de Lei do Senado n° 30, de 2018—Pesquisas—Senado Federal. https://www25.senado.leg.br/web/atividade/materias/-/materia/132157

Brazilian Federal Congress. (2020). Projeto de Lei do Senado 4364, de 2020. https://www25.senado.leg.br/web/atividade/materias/-/materia/144381

Brazilian Ministry of Health (Ed.). (2002). Redes estaduais de atenção à saúde do idoso: Guia operacional e portarias relacionadas. Editora MS. http://bvsms.saude.gov.br/bvs/publicacoes/redes_estaduais.pdf

Presidency of Republic of Brazil. (1967). Lei 5233. http://www.planalto.gov.br/ccivil_03/LEIS/1950-1969/L5233.htm

Presidency of Republic of Brazil. (2008). Lei 11736. http://www.planalto.gov.br/ccivil_03/_ato2007-2010/2008/lei/L11736.htm

 

There is no dementia specific legislation at a national level.

There has not been dementia-specific legislation at the national level. However, there are a number of legislations that support older people’s health and welfare in general:

  • Constitution No. 13/1998 on Older People’s Welfare (Undang-Undang Republik Indonesia No. 13 Tahun 1998 Tentang Kesejahteraan Lanjut Usia (Constitution of Republic of Indonesia No. 13/1998 on Older People’s Welfare), 1998)
  • Constitution No. 39/1999 on Human Rights (UU No. 39/1999 Tentang Hak Asasi Manusia (Law No. 39/1999 on Human Rights), 1999)
  • Constitution No. 11/2009 on Social Welfare (Undang-Undang Republik Indonesia No. 11 Tahun 2009 Tentang Kesejahteraan Sosial (Constitution of Republic of Indonesia No. 11/2009 on People’s Welfare), 2009)
  • Constitution No. 36/2009 on Health (Regulation No. 36/2009 on Health (UU No. 36/2009 Tentang Kesehatan), 2009).

The Ministry of Health also issued several regulations on healthcare:

  • Ministry of Health Regulation No. 75/2014 on Community Health Centre (Primary Care) (Ministry of Health Republic of Indonesia, 2014)
  • Ministry of Health Regulation No. 79/2014 on Geriatric Care in Hospital (Ministry of Health Regulation No. 79/2014 on Geriatric Services in Hospitals (Permenkes No. 79/2014 Tentang Pelayanan Geriatri Di RS), 2014)
  • Ministry of Health Regulation No. 67/2015 on Healthcare of Older People in Community Health Centre (Ministry of Health Republic of Indonesia, 2015a)
  • Ministry of Health Regulation No. 25/2016 on National Strategy on Older People’s Health 2016-2019 (Ministry of Health Regulation No. 25/2016 on National Action Plan on Older People’s Health (Permenkes No. 25/2016 Tentang Rencana Aksi Nasional Kesehatan Lanjut Usia 2016-2019), 2016a)

In addition, there are regional efforts:

  • The governor of Bali has issued a legislation on older people’s welfare (No. 11/2018). However, it does not mention dementia explicitly (Bali Regional Regulation No. 11/2018 on Older People’s Welfare (Peraturan Daerah Provinsi Bali No. 11/2018), 2018).

None of the legislations and regulations above mentions dementia explicitly.

References:

Bali Regional Regulation No. 11/2018 on Older People’s Welfare (Peraturan Daerah Provinsi Bali No. 11/2018), (2018) (testimony of Governor of Bali Province).

Ministry of Health Regulation No. 25/2016 on National Action Plan on Older People’s Health (Permenkes No. 25/2016 tentang Rencana Aksi Nasional Kesehatan Lanjut Usia 2016-2019), (2016) (testimony of Ministry of Health Republic of Indonesia).

Ministry of Health Regulation No. 79/2014 on Geriatric Services in Hospitals (Permenkes No. 79/2014 tentang Pelayanan Geriatri di RS), (2014) (testimony of Ministry of Health Republic of Indonesia).

Ministry of Health Republic of Indonesia. (2014). Ministry of Health Regulation No. 75/2014 on Public Health Center (Permenkes No. 75/2014 Tentang Pusat Kesehatan Masyarakat).

Ministry of Health Republic of Indonesia. (2015a). Ministry of Health Regulation No. 67/2015 on Geriatric Services in Public Health Center (Permenkes No. 67/2015 Tentang Penyelenggaraan Pelayanan Kesehatan Lanjut Usia Di Pusat Kesehatan Masyarakat). Kementrian Kesehatan Indonesia, 1–140.

Regulation No. 36/2009 on Health (UU No. 36/2009 tentang Kesehatan), (2009) (testimony of Republic of Indonesia).

Undang-Undang Republik Indonesia No. 11 Tahun 2009 Tentang Kesejahteraan Sosial (Constitution of Republic of Indonesia No. 11/2009 on People’s Welfare). (2009).

Undang-undang Republik Indonesia No. 13 tahun 1998 tentang Kesejahteraan Lanjut Usia (Constitution of Republic of Indonesia No. 13/1998 on Older People’s Welfare). (1998).

UU no. 39/1999 tentang Hak Asasi Manusia (Law no. 39/1999 on Human Rights), (1999) (testimony of Republik Indonesia).

No. However, Kenya ratified the Convention on the Rights of Persons with Disabilities (‘CRPD’ of ‘the Convention’) in 2008. Subsequently the law was absorbed (Article 2(6)) in the Constitution of Kenya 2010 (Government of Kenya, 2010). However, people with disabilities including people with dementia, are still not able to enjoy the same benefits as non-disabled people (The Open Society Initiative for Eastern Africa, 2013).

References:

Government of Kenya. (2010). The Kenya Constitution, 2010. Kenya Law Reports. http://www.kenyalaw.org/lex/actview.xql?actid=Const2010

The Open Society Initiative for Eastern Africa. (2013). How to implement article 12 of convention on the rights of persons with disabilities regarding legal capacity in Kenya: A briefing paper. Nairobi, Kenya. https://www.knchr.org/Portals/0/GroupRightsReports/Briefing%20Paper%20on%20Legal%20Capacity-Disability%20Rights.pdf

In Mexico, so far, there are no specific laws on dementia. However, there is the Law on the Rights of Older Persons (Congreso General de los Estados Unidos Mexicanos, 2002), which is based on the principles of autonomy and fulfillment, participation, equity, co-responsibility, and preferential attention. It also aims at  guaranteeing the rights of integrity, dignity and preference, legal certainty, protection of health, alimentation and family, education, employment and economic capacities, social assistance, participation, popular denunciation, access to services. However, it does not mention dementia specifically.

References:

Congreso General de los Estados Unidos Mexicanos. (2002). Ley de los Derechos de las Personas Adultas Mayores. Diario Oficial de La Federación, 38, 38–52. http://www.diputados.gob.mx/LeyesBiblio/ref/ldpam/LDPAM_orig_25jun02.pdf

Yes. There is Law No. 10.741 established in 2003 (“Older People’s Statute”), which guarantees the rights of all Brazilians aged 60 years and over. Older people (those aged 60 years and over) with dementia are included in this law and, in theory, should be given access to social protection, access to healthcare, housing, dignity, food, education, culture, sports, leisure, work, and transport. There is Normative No. 41 (2018) from the Ministry of Health that outlines palliative care and advance care directives in the context of SUS. The aim of this Normative is to provide quality of life for people with life-threatening diseases from the diagnosis to the end of life. The actions carried out include, among others, the provision of medicines to alleviate pain and the offer of psychological support for both the patients and their families (Brazilian Ministry of Health, 2018g, 2019b). The Law number 10.216 (2001) outlines about rights and protection of people living with mental disorders (Presidency of Republic of Brazil, 2001, p. 216). These laws comply with international human rights standards.

References:

Brazilian Ministry of Health. (2018g). RESOLUÇÃO No 41, DE 31 DE OUTUBRO DE 2018—Imprensa Nacional. http://www.in.gov.br/materia

Brazilian Ministry of Health. (2019b). Cuidados Paliativos no SUS. Ministério Da Saúde.

Presidency of Republic of Brazil. (2001). Lei 10.216. http://www.planalto.gov.br/ccivil_03/leis/leis_2001/l10216.htm

The laws relevant to persons with dementia are the following (Government of India, 2016; Ministry of Law and Justice, 2007; Ministry of Law and Justice, 2017; Kumar et al., 2019):

  • The Mental Health Care Act (2017),
  • The Maintenance and Welfare of Parents and Senior Citizens Act (2007),
  • the Rights of Persons with Disabilities Act 2016
References:

Government of India. (2016). The Rights of Persons with Disabilities Act. THE GAZETTE OF INDIA EXTRAORDINARY PART II.

Kumar, C.T.S., Shaji, K.S., Varghese, M., Nair, M.K.C. (Eds) Dementia in India 2020. Cochin: Alzheimer’s and Related Disorders Society of India (ARDSI), Cochin Chapter, 2019. Available from: https://dementiacarenotes.in/dcnfiles/Dementia-in-India-2020.pdf

Ministry of Law and Justice. (2007). Maintenance and welfare of parents and senior citizens Act. Government of India.

Ministry of Law and Justice. (2017). The Mental Health Care Act 2017. Government of India. Available from: https://egazette.nic.in/WriteReadData/2017/175248.pdf

Article 54(1) of the Constitution of Kenya 2010 provides that “a person with disability is entitled;

(a) to be treated with dignity and respect and to be addressed and referred to in a manner that is not demeaning;

(b) to access educational institutions and facilities for persons with disabilities that are integrated into society to the extent compatible with the interests of the person;

(c) to reasonable access to all places, public transport and information;

(d) to use Sign language, Braille or other appropriate means of communication; and

(e) to access materials and devices to overcome constraints arising from the person’s disability.” (Government of Kenya, 2010), page 37.

Article 54(2) states that “The State shall ensure the progressive implementation of the principle that at least five percent of the members of the public in elective and appointive bodies are persons with disabilities” (The Republic of Kenya, 2013), page 37.

There are no other provisions for protecting the rights of people with dementia. However, a recent training workshop (July 2019) for clinicians, NGOs promoting research and advocating for the rights of people with psychosocial disabilities, government institutions and policy makers used the WHO Quality Rights Tool Kit (World Health Organisation, 2012) to create awareness and to transfer knowledge into practice. The Mental Health Amendment Bill of 2018 is the most recent legislation addressing Kenya’s infrastructure around Mental Health. It outlines, among other things, the obligations of  national and county governments to build systems that address mental illness (GoK, 2018). The document does not make mention of any specific illnesses, nor does it provide a protocol for addressing them.   

References:

GoK. (2018). Kenya Gazette Supplement. Finance Act, 2018, 59(59), 165.

Government of Kenya. (2010). The Kenya Constitution, 2010. Kenya Law Reports. http://www.kenyalaw.org/lex/actview.xql?actid=Const2010

Republic of Kenya. (2013). The National Social Security Fund Act, 2013 No. 45 of 2013. 27 December. Nairobi, Kenya. http://kenyalaw.org/kl/fileadmin/pdfdownloads/Acts/NationalSocialSecurityFundAct2013.pdf

World Health Organisation. (2012). WHO QualityRights Tool Kit: Assessing and improving quality and human rights in mental health and social care facilities. Geneva, Switzerland. https://apps.who.int/iris/handle/10665/70927

 

Although there are no specific laws on dementia, other laws have an indirect impact.

The Mental Health Care Act (2017) has certain provisions that are relevant to persons with dementia such as advance directives and nominated representatives (Ministry of Law and Justice, 2017; Kumar et al., 2019).

References:

Kumar, C.T.S., Shaji, K.S., Varghese, M., Nair, M.K.C. (Eds) Dementia in India 2020. Cochin: Alzheimer’s and Related Disorders Society of India (ARDSI), Cochin Chapter, 2019. Available from: https://dementiacarenotes.in/dcnfiles/Dementia-in-India-2020.pdf

Ministry of Law and Justice. (2017). The Mental Health Care Act 2017. Government of India. Available from: https://egazette.nic.in/WriteReadData/2017/175248.pdf

For people who are perceived as not having capacity to make legal and financial decisions, the nomination of a trusted person is regulated under the Indonesian Civil Code, which is still largely based on the Dutch colonial legal system (Hariyanto, 2019). The process is known as pengampuan (Dutch: curatelle, English: conservatorship), and the legal basis are Article 433, 434, 437, 438, 439, 440, 441, 442, 449 of the Indonesian Civil Code (Indonesia: Civil Code, 1847) which are further described below. The fact that this is based on a legal system dating a century back might explain the use of a stigmatising and derogatory language [dungu (English: stupid) translated into ‘simple-mindedness’; and gila (English: crazy), translated into ‘insanity’).

Legal basis for pengampuan/curatelle/conservatorship:

  • Who is eligible to be put under conservatorship: ‘Article 433. An adult, who is in a continuous state of simple-mindedness, insanity, or rage, shall be placed under conservatorship, notwithstanding that he might have mental capacity from time to time. An adult individual may be placed under conservatorship as a result of improvidence.’ (Indonesia: Civil Code, 1847, p.65)
  • Who can have the conservatorship (trusted to make decisions): ‘Article 434. Each blood relative shall be authorized to request conservatorship on behalf of one of his relatives, due to his simple-mindedness, insanity, or rage. Conservatorship in respect of a person who is improvident may only be requested by the blood relatives in direct line, and by those in a collateral line up to and including the fourth degree. Due to one or more reasons, one spouse may request to put the other under conservatorship. An individual, who feels unable to take proper care of his affairs, due to limited mental capacity, may himself request to be placed under conservatorship.’ (Indonesia: Civil Code, 1847, p.66).
  • Time of the conservatorship being effective:
  • Article 446. The conservatorship shall be effective as of the date that the judgment or decision is passed. All acts committed thereafter by the individual placed in conservatorship shall be invalid by law….
  • Article 447. All acts committed as a result of simple-mindedness, insanity or rage, prior to the judgment granting conservatorship, may be invalidated if the grounds for seeking guardianship appeared to have existed at the time that the acts were committed’ (Indonesia: Civil Code, 1847, p.67).
  • Supporting documents needed to apply for conservatorship:
  • ‘Article 437. The events, which demonstrate simple-mindedness, insanity, rage, or improvidence, shall be specifically described in the letter of request, and the evidential documents as well as a submission of one of the witnesses shall also be enclosed…
  • Article 438. If the court of justice is of the opinion that the events are sufficiently significant to lead to a conservatorship, then the court shall conduct a hearing of the blood relatives or relatives by marriage…
  • Article 439. The court of justice shall, after a hearing or proper summons of the individuals as referred to in the previous article, question the individual whose conservatorship has been requested; in the event that he is immobile, the questioning shall take place in his residence by one or more judges designated thereto, accompanied by the court clerk, and in all matters, in the presence of the prosecution counsel… The prosecution counsel is not required to be present at this questioning; minutes shall be drawn up of the questioning of which an authentic copy shall be submitted to the court of justice… The questioning shall not take place before the letter of request as well as the report containing the views of the blood relatives, have been notified to the individual whose conservatorship is requested.’
  • Others
  • ‘Article 440. In the event that the court of justice, after the hearing or proper summons of the blood relatives or relatives by marriage, or after having heard the individual whose conservatorship is requested, decides that it has been adequately informed, the court shall, without any further formalities, deliberate upon the letter of request; in the event that it decides otherwise, the court shall instruct the hearing of the witnesses for the purpose of clarifying the matters presented.
  • Article 441. Following the questioning mentioned in article 439, the court of justice shall, in the event that there are grounds therefor, nominate a provisional administrator, to take care of the personal matters and assets of the individual, whose in conservatorship has been requested.
  • Article 442. The judgment upon a request for conservatorship shall be passed in a public court session, after a hearing or proper summons of the parties, and pursuant to the conclusions of the prosecution counsel…
  • Article 449. Upon the judgment in respect of conservatorship obtaining legal validity, the court of justice shall appoint a conservator. The appointment shall be immediately notified by the court to the Orphans’ Chamber. The supervising conservatorship shall be assigned to the Orphans’ Chamber… In this regard, the provisional administrator’s involvement shall cease, and he shall be required to submit an account of his administration; in the event that he is appointed as conservator, the account shall be submitted to the supervising conservator’ (Indonesia: Civil Code, 1847, p.66-67).
References:

Hariyanto, E. (2019). BURGELIJK WETBOEK (Menelusuri Sejarah Hukum Pemberlakuannya di Indonesia). Al-Ihkam: Jurnal Hukum Dan Pranata Sosial, IV(1), 141–152.

Indonesia: Civil Code. (1847).

There is no other document except the WHO Quality Rights Tool Kit outlining provision for supported decision making or advance planning in Kenya. Kenya’s legal capacity system does not meet the UN Convention on the Rights of Persons with Disabilities (CRPD). In 2011 the Kenyan government submitted a report to the UN Committee on the Rights of Persons with Disabilities, which contained an expression of intention to take legal steps to move towards supported decision-making from substituted arrangements. So far, this has not been implemented in practice (Mental Disability Advocacy Center (MDAC), 2014).

References:

Mental Disability Advocacy Center (MDAC). (2014). The Right to Legal Capacity in Kenya. Budapest, Hungary. https://tbinternet.ohchr.org/Treaties/CRPD/Shared%20Documents/KEN/INT_CRPD_ICO_KEN_19784_E.pdf

 

In eleven states in Mexico (Aguascalientes, Chihuahua, Coahuila, Colima, Mexico City, Mexico state, Guerrero, Hidalgo, Michoacan, Nayarit, and San Luis Potosí), there are advance directive laws that allow people to freely and consciously decide how they want to be medically treated if they face a terminal illness or an accident. For this reason, people who wish to make the request, must present themselves before notaries to express in advance how to be treated if they find themselves in that position. Regulation regarding advance directives include power of attorney regulated by the Federal Civil Code[1] established as a legal and judiciary condition for those individuals who do not have the capacity to make decisions on their own because of a mental disorder, illness, or due to impairment as a consequence of substance abuses and who are consequently limited as to their integrity and ability to make decisions and take care of themselves, and therefore need to appoint a legal representative (guardian and curator) who must attend to their legal life. Thus, patients with chronic, progressive, and degenerative and/or dementia such as Cerebral Vascular Disease, Huntington’s disease, and Alzheimer’s disease, fall into this category.

The guardian is the person who will be in charge of the guardianship of a person or their material goods, and the curator will be the one who will supervise the fulfillment of the obligations of the guardian. Healthcare power of attorney trials, take place in a family court in most of the country, for which the advice of gerontologists, geriatricians and neuro-geriatricians are recommended. In fourteen states in Mexico, Do Not Resuscitate Orders (DNR) are established through a law and its regulation[2] so that all individuals with intact capabilities can decide if they want to be submitted or not to means, treatments or medical procedures that aim to prolong their life when the person is at the end of life, aiming to protect their dignity, and favouring palliative care and end of life care. The emphasis is on accompanying the patient during this stage of his life, not prolonging or shortening his life, but respecting the natural moment of death. It is a document that will be used at the moment a doctor has diagnosed an advanced stage disease.

[1] CÓDIGO CIVIL FEDERAL. Nuevo Código publicado en el Diario Oficial de la Federación en cuatro partes los días 26 de mayo, 14 de julio, 3 y 31 de agosto de 1928. TEXTO VIGENTE: Última reforma publicada DOF 03-06-2019; http://www.diputados.gob.mx/LeyesBiblio/pdf/2_030619.pdf

[2] Ley de Voluntad Anticipada para el Distrito Federal, 2008 (https://drive.google.com/file/d/0B0qDlFGzsYQfaHFCQWQ0cXZKRzA/view ) and its Reglamento (https://drive.google.com/file/d/0B0qDlFGzsYQfSEJJV2QyTmMtNjQ/view )

The Maintenance and Welfare of Parents and Senior Citizens Act (2007) places the responsibility on children or relatives to take care of the elderly and highlights that neglect or abandonment of elderly people is a punishable offence by law (Ministry of Law and Justice, 2007). In addition, the Rights of Persons with Disabilities Act 2016 and the Mental Health Care Act 2017 highlight protection of rights of people with disabilities and mental health conditions, respectively (Government of India, 2016; Ministry of Law and Justice, 2017).

References:

Government of India. (2016). The Rights of Persons with Disabilities Act. THE GAZETTE OF INDIA EXTRAORDINARY PART II.

Ministry of Law and Justice. (2007). Maintenance and welfare of parents and senior citizens Act. Government of India.

Ministry of Law and Justice. (2017). The Mental Health Care Act 2017. Government of India. Available from: https://egazette.nic.in/WriteReadData/2017/175248.pdf

Human rights of all persons (including safeguarding against exploitation, violence, or abuse) are regulated by the Law no. 9/1999 on Human Rights. There is an independent legal body called the National Commission on Human Rights (Komnas HAM) whose function is to carry out assessment, research, counselling, monitoring, and mediation. It has the capacity to receive appeals/complaints, to run investigations, and to perform monitoring-evaluations when needed (UU No. 39/1999 Tentang Hak Asasi Manusia (Law No. 39/1999 on Human Rights), 1999).

There is also a law pertaining domestic violence, which is applicable to abuse committed within the household. There is no mention of different approaches in cases where the victim is an older person or a person living with dementia (UU No. 23/2004 Tentang Penghapusan Kekerasan Dalam Rumah Tangga (Law No. 23/2004 on Elimination of Domestic Violence), 2004).

References:

UU No. 23/2004 tentang Penghapusan Kekerasan Dalam Rumah Tangga (Law No. 23/2004 on Elimination of Domestic Violence), (2004) (testimony of Republik Indonesia).

UU no. 39/1999 tentang Hak Asasi Manusia (Law no. 39/1999 on Human Rights), (1999) (testimony of Republik Indonesia).

The care and protection of older members of society bill, 2018; PART III provides for the prohibition, notification, and register of abuse of an older member of society. PART VII indicates the manner in which matters concerning older members of society are to be tackled while taking into consideration the unique needs of such persons (Republic of Kenya, 2018b). However, this is not specific to people with dementia.

References:

Republic of Kenya. (2018b). The Care and Protection of Older Members of Society Bill, 2018. Kenya Gazette Supplement No. 73 (Senate Bills No. 17), pp. 333–363. Nairobi, Kenya. http://www.parliament.go.ke/sites/default/files/2018-08/The%20Care%20and%20Protection%20of%20Older%20Members%20of%20Society%20Bill%2C%202018.pdf

 

While there are no specific laws in favor of persons with dementia or their caregivers in Mexico, more general laws are aimed at preserving their rights as persons, such as the Federal Law to Prevent and Eliminate Discrimination, and the General Law for the Inclusion of Persons with Disabilities. However, it must be recognised that neither of these two mentions dementia specifically.

This section to be updated soon.

In the LTC guideline for Puskesmas, transitional/subacute care (from hospital to community care) is recognised as an important part of LTC. However, it is not yet widely available in Indonesia and needs further development (Kementerian Kesehatan RI Direktorat Jenderal Kesehatan Masyarakat, 2018).

References:

Kementerian Kesehatan RI Direktorat Jenderal Kesehatan Masyarakat. (2018). Pedoman untuk Puskesmas dalam Perawatan Jangka Panjang bagi Lanjut Usia. Kementerian Kesehatan RI.

The care and protection of older members of society bill, 2018; PART III section 10 (1) states that “each county government shall establish and implement Community based programmes for the care and protection of older members of society residing within the county” (Republic of Kenya, 2018b), page 341. However, this is not specific to people with dementia.

References:

Republic of Kenya. (2018b). The Care and Protection of Older Members of Society Bill, 2018. Kenya Gazette Supplement No. 73 (Senate Bills No. 17), pp. 333–363. Nairobi, Kenya. http://www.parliament.go.ke/sites/default/files/2018-08/The%20Care%20and%20Protection%20of%20Older%20Members%20of%20Society%20Bill%2C%202018.pdf

 

There are no specific guidelines for transitioning to community-based services.

This section to be updated soon.

The Ministry of Social Affair monitors institutions providing care to older people through direct visits, supervision, and regular evaluation to ensure the provision of sustainable quality care adhering to standards (Ministry of Social Affairs Republic of Indonesia, 2018).

References:

Ministry of Social Affairs Republic of Indonesia. (2018). Ministry of Social Affairs Regulation No. 5/2018 on National Standard of Older People Social Rehabilitation (Permensos No. 5/2018 tentang Standar Nasional Rehabilitasi Sosial Lanjut Usia).

The care and protection of older members of society bill, 2018; PART VI section 33 (1) states that “the county executive committee member shall, for purposes of monitoring and evaluating the provision of services by homes registered under this Act, appoint such number of inspectors as the county executive committee member may consider appropriate” (Republic of Kenya, 2018b), page 354.

References:

Republic of Kenya. (2018b). The Care and Protection of Older Members of Society Bill, 2018. Kenya Gazette Supplement No. 73 (Senate Bills No. 17), pp. 333–363. Nairobi, Kenya. http://www.parliament.go.ke/sites/default/files/2018-08/The%20Care%20and%20Protection%20of%20Older%20Members%20of%20Society%20Bill%2C%202018.pdf

There are clinical practice guidelines for the detection and management of elder abuse (CENETEC, 2013; IMSS, 2013). But they do not make any specifications about people living with dementia.

References:

CENETEC. (2013). Detección y Manejo del Maltrato en el Adulto Mayor. www.cenetec.salud.gob.mx

IMSS. (2013). Guía de Práctica Clínica GPC. Detección y manejo del maltrato en el adulto mayor.

Yes and no.

There is guidance, for example, from the Brazilian Society of Geriatrics and Gerontology, in partnership with ‘Choosing Wisely’, which states that people should not be mechanically contained/restrained (SBGG, 2018). However, this is not prohibitive and still is common practice in Brazil. Mostly, the guidance available says restrains (chemical/physical/environmental) should be avoided and should be done only as a last resource to a) protect the person, b) protect others, c) guarantee effective treatment. This decision should be discussed among the multidisciplinary team and with the family, and the reasons for that should be documented.

References:

SBGG. (2018, June 7). CBGG 2018: SBGG divulga recomendações sobre escolhas sensatas em saúde em parceria com Choosing Wisely Brasil. SBGG. https://sbgg.org.br/cbgg-2018-sbgg-divulga-recomendacoes-sobre-escolhas-sensatas-em-saude-em-parceria-com-choosing-wisely-brasil/

 

This section to be updated soon.

There is no specific regulation regarding coercive practices targeted at people with dementia. However, stigma in mental illnesses often results through physical restraining of people living with mental illness, especially in areas where healthcare can be difficult to access. The practice is known as pasung (shackling) and can still be found in Indonesia despite being banned since 1977 (Human Rights Watch, 2016). In 2017, the Ministry of Health has issued a regulation which covers the prevention of the practice as well as management and rehabilitation guidelines for people affected by these practices. Management of ending of the practice is approached not only through advocacy and education, but also by making pharmacological and non-pharmacological interventions accessible. This is done by facilitating the registration of people affected with the NHIS as well as through home visits and home care, day care and vocational rehabilitation (Permenkes No. 54/2017 Tentang Penanggulangan Pemasungan Pada Orang Dengan Gangguan Jiwa (Ministry of Health Regulation No. 54/2017 on Countermeasures of Shackling Practice on People with Mental Illness), 2017).

References:

Human Rights Watch. (2016). Living in Hell: Abuses against People with Psychosocial Disabilities in Indonesia. Human Rights Watch.

Permenkes No. 54/2017 tentang Penanggulangan Pemasungan pada Orang dengan Gangguan Jiwa (Ministry of Health regulation No. 54/2017 on Countermeasures of Shackling Practice on People with Mental Illness). (2017). (Testimony of Ministry of Health Republic of Indonesia).

Kenya still relies on the Convention on the Rights of Persons with Disabilities (CRPD). Article 16: Freedom from exploitation, violence, and abuse states that “in order to prevent the occurrence of all forms of exploitation, violence, and abuse, States Parties shall ensure that all facilities and programmes designed to serve persons with disabilities are effectively monitored by independent authorities” (United Nations, 2006), page 12.

References:

United Nations. (2006). Convention on the Rights of Persons with Disabilities and Optional Protocol. https://www.un.org/disabilities/documents/convention/convoptprot-e.pdf

 

The Official Mexican Standard 025 (DOF, 2015) for the Provision of Services in Psychiatric Medical Hospital Care Units, indicates a set of Provisions that regulate the treatment and rehabilitation of people with a mental disorder, respecting their human rights and covering two areas: a) Quality specialised medical care, and b) Preservation of the human rights of the user. With respect to this second item, it is stated that people with mental disorders have the right to receive dignified and humane treatment by mental health personnel, they are not to be discriminated against because of their condition, not to be the object of diagnosis or treatment for political, social, racial, religious or other reasons different from or external to the state of their health, they have to be protected against all exploitation, abuse or degrading treatment, and they are not to be subjected to physical restrictions or involuntary confinement.

References:

DOF. (2015). Norma Oficial Mexicana NOM-025-SSA2-2014. Para la prestación de servicios de salud en unidades de atención integral hospitalaria médico-psiquiátrica. http://www.dof.gob.mx/normasOficiales/5805/salud3a11_C/salud3a11_C.html

Yes. Although there is no law specifically outlining advance care directives, the Brazilian Ministry of Health has regulated palliative care in SUS through Normative No. 41 (2018). In this regulation, advance care directives are considered for all people with any life threatening disease, including dementia (Brazilian Ministry of Health, 2019b).

References:

Brazilian Ministry of Health. (2019b). Cuidados Paliativos no SUS. Ministério Da Saúde.

The Mental Health Care Act (2017) has certain provisions that are relevant to persons with dementia such as advance directives (Kumar et al., 2019). In addition, clinicians and persons with dementia must be made also aware of (Shaji et al., 2021) certain concerns related to this.

References:

Kumar, C.T.S., Shaji, K.S., Varghese, M., Nair, M.K.C. (Eds) Dementia in India 2020. Cochin: Alzheimer’s and Related Disorders Society of India (ARDSI), Cochin Chapter, 2019. Available from: https://dementiacarenotes.in/dcnfiles/Dementia-in-India-2020.pdf

Shaji, K. S., Chandran, N., Chandra, M., & Kumar, R. (2021). Assessment of Dementia Under Prevailing Indian Laws and Its Implications. Indian journal of psychological medicine43(5 Suppl), S13–S18. https://doi.org/10.1177/02537176211023272

There is no specific legislation found regarding advanced care directives.

The Official Mexican Standard on Criteria for the Care of Terminally Ill Patients with Palliative Care 011 (DOF – Diario Oficial de la Federación, 2014), includes support management as part of the continuum in the care of patients in advanced disease, which indicates that the management should follow this order: 1. Curative intention, 2. Symptomatic support, 3. Palliative care, 4. Patient close to death, 5. Agony, and 6. Bereavement.

Although it was issued in 2014, it was not until 2018 that dementia was specifically identified in an annex, where the following recommendations are made:

  1. Assessment of functional status
  2. Evaluation of comorbid situations and quality of care
  3. Limitations: Inability to transfer from one place to another and to dress without assistance, inability to bathe properly, fecal and urinary incontinence, inability to communicate intelligibly
  4. Presence of medical complications
  5. Comorbid conditions associated with dementia (aspiration pneumonia, decubitus ulcers, pyelonephritis, or lower urinary tract infection, etc.)
  6. Difficulty swallowing food or refusing to eat, and in those receiving nasogastric tube feeding, deterioration of nutritional status.

In a general way the norm points out:

  1. Areas of attention: Patients must be identified and diagnosed with an advanced disease limiting life by the doctors treating the Health Units
  2. Palliative management plan for the patient and his or her family, proposed by the multidisciplinary health team
  3. The patient and the family are guided and trained to carry out the role of care, to continue their care in the best family environment and to be able to refer the patient properly to their home.

This service is free in Health Units and home care must be received. However, given the infrastructure of the Mexican health system, it has not been possible to adequately implement this standard.

References:

DOF – Diario Oficial de la Federación. (2014). ACUERDO que modifica el Anexo Único del diverso por el que el Consejo de Salubridad General declara la obligatoriedad de los Esquemas de Manejo Integral de Cuidados Paliativos, así como los procesos señalados en la Guía del Manejo Integral de Cuidados Paliativos. https://www.dof.gob.mx/nota_detalle.php?codigo=5534718&fecha=14/08/2018&print=true

The Brazilian Association of Psychiatry runs a campaign for ending discrimination to people with mental health disorders, not only to people living with dementia (ABP | Campanha Psicofobia, n.d.). In addition, there is “Law Project” No 74 (2014) which was created to criminalise discrimination against people with mental health disorders. However, this law project seems to be ended without any conclusion in the Senate House Website (Projeto de Lei Do Senado N° 74, de 2014, 2014).

References:

ABP | Campanha Psicofobia. (n.d.). Psicofobia. Retrieved October 30, 2019, from https://www.psicofobia.com.br

Projeto de Lei do Senado n° 74, de 2014. (2014). https://www25.senado.leg.br/web/atividade/materias/-/materia/116394

 

This section to be updated soon.

There is no specific provision for people with dementia. However, Law No. 8/2016 protects the rights of people living with disability to be free from discrimination, including in the workplace. The regulation ensures the rights of people with disabilities, including non-discrimination in the labour market (e.g., the right to have the same job and salary as people without disability and to receive the required support to work optimally to avoid losing their job due to their disability) (UU No. 8/2016 Tentang Penyandang Disabilitas (Law No. 8/2016 on People with Disability), 2016).

References:

UU No. 8/2016 tentang Penyandang Disabilitas (Law No. 8/2016 on People with Disability). (2016). (Testimony of Republik Indonesia).

Kenya’s Mental Health Policy vision is to have “A nation where mental health is valued and promoted, mental disorders prevented and persons affected by mental disorders are treated without stigmatization and discrimination” and one of the priority actions is to “undertake communication programs to reduce stigma” (Ministry of Health, 2015c), page 7, page 14. Provisions to end discrimination in the workplace are covered within core values or mission statements for certain organizations. However, this is not specific to people with dementia. A task force on mental health was constituted in December 2019 whose mandate was to assess Kenya’s mental health status, systems including legal, policy and administrative environment and social determinants of adverse mental health outcomes and report on the recommendations that would lead to improved mental health and quality of life (Ministry of Health, 2020). Preliminary results in early 2020 revealed existing issues around stigma for different mental disorders and provided recommendations for improved funding for mental health care and integration of mental health services in primary health care settings in all counties.

References:

Ministry of Health. (2015c). Kenya mental health policy 2015-2030: Towards Attaining the Highest Standard of Mental Health. Nairobi, Kenya. https://publications.universalhealth2030.org/uploads/Kenya-Mental-Health-Policy.pdf

Ministry of Health. (2020). The Taskforce on Mental Health Public Hearing. https://www.health.go.ke/the-taskforce-on-mental-health-public-hearing/

There is no specific legislation related to fighting discrimination against people with dementia.

No provisions were found.

This section to be updated soon.

There is no specific legislation or provisions found regarding ending discrimination against family carers (of people with dementia or other disability).

Similarly, in promotion of good mental health, the mental health policy (Ministry of Health, 2015c) aims at involving persons with mental disorders and caregivers in planning and feedback of mental health services.

References:

Ministry of Health. (2015c). Kenya mental health policy 2015-2030: Towards Attaining the Highest Standard of Mental Health. Nairobi, Kenya. https://publications.universalhealth2030.org/uploads/Kenya-Mental-Health-Policy.pdf

 

There is no specific legislation related to fighting discrimination against family carers.

This section to be updated soon.

There is a conditional cash transfer programme to support poor families, with additional amount available for families providing care to an older person living in the household (Program Keluarga Harapan) (Kementerian Sosial Republik Indonesia, 2019). However, no regulations are found that make specific provisions to protect the rights of families and other unpaid carers, such as a right for education or a right for respite.

References:

Kementerian Sosial Republik Indonesia. (2019). Program Keluarga Harapan. https://kemsos.go.id/program-keluarga-harapan-pkh

This is not reflected in any policy or document in Kenya. However, under the National Policy on Older Persons and Ageing policy statement, the government intends to collaborate with relevant stakeholders to “promote and protect the family as a fundamental unit of the society, to provide care, and assistance to older Persons (Ministry of Labour, 2014), page 10.” There are currently no ongoing programmes in Kenya protecting the family as a unit.

References:

Ministry of Labour, S. S. and services. (2014). The national policy on older persons and ageing. Nairobi, Kenya. http://www.partners-popdev.org/ageing/docs/National_Policy_on_Older_Persons_and_Ageing_Kenya.pdf

So far, there is no specific law to promote the rights of unpaid family or caregivers of persons with dementia.

Yes. The Brazilian Federal Constitution (1988) in article number 229 states that off-spring must support their older parents. Moreover, the Older People’s Statute and the National Healthcare Policy for Older People advocates that older people have the right to be supported by their family members (or at least by the society). Yet in Brazil, it is commonly expected by society that older people receive support from their children (Presidency of Republic of Brazil, 1988).

References:

Presidency of Republic of Brazil. (1988). Federal Constitution of Brazil. http://www.planalto.gov.br/ccivil_03/constituicao/constituicao.htm

The Maintenance and Welfare of Parents and Senior Citizens Act (2007) places the responsibility on children or relatives to take care of the elderly and highlights that neglect or abandonment of elderly people is a punishable offence by law (Ministry of Law and Justice, 2007).

References:

Ministry of Law and Justice. (2007). Maintenance and welfare of parents and senior citizens Act. Government of India.

Yes, Law no. 1/1974 (article 46) on marriage, states that an adult child is obliged to care for his/her parents and other family members in the vertical family line within his/her capacities if they need his/her help (UU No. 1/1974 Tentang Perkawinan (Law No. 1/1974 on Marriage), 1974).

References:

UU No. 1/1974 tentang Perkawinan (Law No. 1/1974 on Marriage). (1974). (Testimony of Republik Indonesia).

The care and protection of older members of society bill, 2018; PART III section 11 (1) states that “Home based care programmes established by a Home based care county government under section 10(2) (b) shall be implemented with respect to older members of society who (part d) are isolated and have no family member or care giver who can care for them” (Republic of Kenya, 2018b), page 342. This is an indication that before placement in a home-based care programme, the option on whether the person has a family member or caregiver is taken into consideration. In some cases, placement is made if the family member is not in a position to be a direct caregiver or has other responsibilities. Family carers often perform these duties due to cultural or spiritual reasons such as “fulfilment of a duty as a child”, “to return the favour of being a child” and” associated with a blessing i.e. to receive parental blessing.” PART III 59(f) also states Pursuant to Article 57 of the Constitution, every older member of society has the right to receive reasonable care, assistance, and protection from their family and the State  (Government of Kenya, 2010), page 38.

References:

Government of Kenya. (2010). The Kenya Constitution, 2010. Kenya Law Reports. http://www.kenyalaw.org/lex/actview.xql?actid=Const2010

Republic of Kenya. (2018b). The Care and Protection of Older Members of Society Bill, 2018. Kenya Gazette Supplement No. 73 (Senate Bills No. 17), pp. 333–363. Nairobi, Kenya. http://www.parliament.go.ke/sites/default/files/2018-08/The%20Care%20and%20Protection%20of%20Older%20Members%20of%20Society%20Bill%2C%202018.pdf

Article 9 of the Law on the Rights of Older Persons (DOF – Diario Oficial de la Federación, 2018) states that the family of the older adult must fulfil its social function; therefore, it must look after each. Each family is responsible for providing the necessary satisfiers for their care and integral development, and has the following obligations to them:

  1. Granting food,
  2. Encourage daily family life, where the elderly person actively participates, and promote at the same time the values that affect their emotional needs, protection and support,
  3. Prevent any of its members from committing any act of discrimination, abuse, exploitation, isolation, violence, and legal acts that endanger their person, property, and rights.
References:

DOF – Diario Oficial de la Federación. (2018). Ley de los Derechos de las personas adultas mayores.

Education Policy Outlook – OECD. (n.d.). Retrieved February 20, 2019, from http://www.oecd.org/education/policy-outlook/

It is obtained through Court proceedings. The curators may be spouses, parents, children, in cases where the people mentioned are missing, the judge may choose another person as a curator or the representative of the institutions where the older person lives. The curatorship may be awarded on a temporary basis (Jusbrasil, 2018).

References:

Jusbrasil. (2018). Saiba o que é e como ocorre a Interdição de Idoso. Jusbrasil. https://beatriceekarlalopes.jusbrasil.com.br/artigos/573034226/saiba-o-que-e-e-como-ocorre-a-interdicao-de-idoso

This section to be updated soon.

Provision exists to support decision-making. According to the legal requirements for curatorship listed previously, its award starts with the day of the judgment. No time duration is not mentioned, thus we can assume that it is awarded permanently, unless revoked.

For the curatorship/power of attorney obtained to take place, a resolution dictated by a competent authority is needed. A comprehensive assessment of the physical and mental situation of the older adult has to be performed in order to exclude other ailments or temporary conditions such as delirium, where usually there may be an underlying cause, and that once treated, disappear.