DESK REVIEWS | 04.05.03. Is there specific legislation pertaining to the following:

DESK REVIEW | 04.05.03. Is there specific legislation pertaining to the following:

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

Laws in South Africa generally protect against discrimination on the grounds of race, age, sex, gender, pregnancy, marital status, ethnic or social origin, colour, sexual orientation, disability, religion, conscience, belief, culture, language and birth. Provisions in RSA are not dementia-specific and despite recommendations and mobilisation for reform, advance directives or ‘living wills’ are not legally recognised as enforceable instructions in South Africa (Jordaan, 2011).

References:

Jordaan, L. (2011). The legal validity of an advance refusal of medical treatment in South African law (part 1). De Jure, 44(1), 32–48. http://www.scielo.org.za/pdf/dejure/v44n1/04.pdf

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.

Legislative provisions for anti-discriminatory practices are not dementia-specific in South Africa. However, the Constitution of South Africa, chapter 2’s Bill of Rights protects the rights of all persons with safeguards against the unfair discrimination of anyone (including disability) (see section 9(3) and (4), p.5), protecting the right to human dignity (section 10, p.6), and freedom and security of the person (see section 12, p.6).

Additionally, the Older Person’s Act promotes the provision of services to older persons that includes public education on ageing including dementia (see chapter 4, section 17(d), p.9), supporting the combat of stigma and discrimination against persons living with dementia. Although it is not clear to which extent these programmes are operational and/or effective.

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.

Legislative provisions for anti-discriminatory practices are not dementia-specific in South Africa, however, they are protected generically under the Bill of Rights, Constitution of South Africa. Refer to response above regarding generic provisions against discrimination of all persons in South Africa (section V, (c)(ii), p.38).