DESK REVIEWS | 04.02.01. Dementia-specific policies and plans

DESK REVIEW | 04.02.01. Dementia-specific policies and plans

Yes. There is the Law project number 4364/2020 (PL 4364/2020), which institutes the “National Policy for Integrated Care for People Living with Alzheimer’s Disease and other Dementias”. This law project has been approved by the Brazilian Federal Senate and waits for approval from the Chamber of Deputies to be implemented (Brazilian Federal Senate, 2021). Members of STRiDE-Brasil have been advocating for a more comprehensive and person-centred care approach in this law. Some achievements have already happened; however, more changes can be done to improve the law. Therefore, the STRiDE-Brasil team continues to advocate for improving the law.

Apart from that, some municipalities have developed regional plans for dementia. For instance, the Federal District approved in 2021 the law 6.926 regarding the policy for prevention, treatment, and support for people living with Alzheimer’s disease and other dementias and their family carers (Federal District Government, 2021). In the same trend, the city of São Paulo approved also in 2021 the PL 769/2019 (São Paulo Chamber of Deputies, 2019) in the state of Rio Grande do Sul there is the PL 131/2018 (Projeto de Lei n 131/2018, 2018) and in the city of Novo Hamburgo there is the PL 12/2020 (Novo Hamburgo Municipal Chamber, 2020). All of them aim to support people living with dementia and their carers. Besides, some politicians have shown a growing interest in dementia and discussions have been taking place in the Brazilian government. For example, the Professor Ricardo Nitrini (member of the STRiDE-Brasil steering committee) was invited to a meeting in the Chamber of Deputies in 2019 to discuss the creation of a possible dementia plan in Brazil, at that time. In addition, Professor Cleusa Ferri was invited to a meeting in 2020 in the Ministry of Health to discuss strategies for dementia care.

References:

Brazilian Federal Senate. (2021). Aprovado projeto que institui política de enfrentamento ao Alzheimer. https://www12.senado.leg.br/noticias/materias/2021/11/16/aprovado-projeto-que-institui-politica-de-enfrentamento-ao-alzheimer

Federal District Government. (2021). LEI No 6.926—Política distrital para prevenção, tratamento e apoio às pessoas com doença de Alzheimer e outras demências. https://www.tjdft.jus.br/institucional/relacoes-institucionais/arquivos/lei-no-6-926-de-02-de-agosto-de-2021.pdf

Novo Hamburgo Municipal Chamber. (2020). Projeto de Lei Municipal 12/2020—Novo Hamburgo. Camara Municipal. https://portal.camaranh.rs.gov.br/pm3/informacao_e_conhecimento/noticias/novo-hamburgo-podera-ter-politica-de-enfrentamento-ao-alzheimer

São Paulo Chamber of Deputies. (2019). Projeto de Lei da Câmara Municipal de São Paulo, n 769, de 2019. https://splegisconsulta.camara.sp.gov.br/Pesquisa/DetailsDetalhado?COD_MTRA_LEGL=1&COD_PCSS_CMSP=769&ANO_PCSS_CMSP=2019

There is no dementia-specific national document in place or under development to our knowledge by the Government of India. However, the Alzheimer’s Related Disorders Society of India (ARDSI) had prepared a draft strategy document, which was handed over to the Health Minister in 2018 for consideration of adoption by the MoHFW (Alzheimer’s Related Disorders Society of India [ARDSI], 2018).

References:

Alzheimer’s and Related Disorders Society of India.  (2018). Dementia India Strategy Report. Alzheimer Disease International. Available from: https://ardsi.org/pdf/Dementia%20India%20Strategy%20Report%202018.pdf

A dementia-specific national strategic plan was launched by the Ministry of Health in March 2016 (Ministry of Health Republic of Indonesia, 2015).

References:

Ministry of Health Republic of Indonesia. (2015). Strategi Nasional Penanggulangan Penyakit Alzheimer dan Demensia Lainnya: Menuju Lanjut Usia Sehat dan produktif. Jakarta: Ministry of Health Republic of Indonesia. Available at: https://www.neurona.web.id/paper/Rencana%20Aksi%20Nasional%20Demensia%202015.pdf

There is currently no national plan or policy on dementia. The STRiDE project in collaboration with the Ministry of Health (collaboration between department of mental health and ageing unit – non-communicable diseases) aims to lay the foundations for a national plan.

In 2011, the National Institute of Geriatrics (INGer) was instructed by the Minister of Health to create an action plan on AD and other dementias and with this, INGER brought together the efforts of different researchers, National Institutes, and NGOs going back at least 20 years into the planning and publication of the National Plan in 2012. Some of the main stakeholders participating in the design and publication of the Plan were the Mexican Alzheimer’s Federation, FEDMA, the National Institute of Neurology and Neurosurgery, the National Institute of Public Health, and the National Institute of Elderly People, INAPAM. The main objective of the National Plan is: “To promote the well-being of people with Alzheimer’s disease and related diseases, and their families, by strengthening the response of the Mexican Health System, in synergy with all responsible institutions”. It is a plan that aims at setting out a strategy to achieve awareness of the problem, de-stigmatise AD and dementia, promote adequate care of older adults with dementia and to generate actions to prevent the disease. Specifically, in the population of older adults with dementia, it aims to: decrease comorbidities, increase functionality, decrease behavioural problems, prevent accidents, improve quality of life, and decrease caregiver stress (Gutiérrez-Robledo & Arrieta-Cruz, 2014).

References:

Gutiérrez-Robledo, L., & Arrieta-Cruz, I. (2014). Plan de Acción Alzheimer y otras demencias, México 2014. http://diariote.mx/docs/plan_alzheimer_WEB.pdf

The last updated version of “The National Policy for Integrated Care for People Living with Alzheimer’s Disease and other Dementias” was in 12 November 2021.

The document has not yet been updated.

To date, the Plan has not been updated.

No such information has been found.

An article on the ADI website suggests that the government allocated approximately $105,000 for the first-year implementation (Alzheimer’s Disease International, 2016).

References:

Alzheimer’s Disease International. (2016). National Dementia Plan launched in Indonesia. https://www.alz.co.uk/news/national-dementia-plan-launched-in-indonesia

Not applicable. However, the STRiDE project and London School of Economics and Political Science (LSE) have funded the development and dissemination of the National Dementia Plan. The estimated cost is about USD 8600. Other partners have made in-kind contribution.

So far, the plan has remained at the proposal level, no progress has been made in its implementation, and no resources have been allocated to it.

There are several indicators to measure output for each of the policy action steps. Monitoring and evaluation of the policy implementation is planned to be conducted through collaboration of the central government with relevant sectors, provincial and district governments and with relevant governmental departments, as well as through the National Commission of Older People (Komisi Nasional Lanjut Usia).

Monitoring and evaluation of technical aspects of the implementation is the responsibility of Komisi Nasional Lanjut Usia, professional organisation, academics, NGO, and relevant sectors. The results of these should advise on the improvement of the policy (Ministry of Health Republic of Indonesia, 2015b). However, the plan does not mention specific time milestones that could be monitored, and we have learnt informally that the Komisi Nasional Lanjut Usia is currently inactive.

References:

Ministry of Health Republic of Indonesia. (2015b). National Strategy: Management of Alzheimer and Other Dementia Diseases: Towards Healthy and Productive Older Persons. Ministry of Health Republic of Indonesia.

The plan only indicates strategies and lines of action. However, there are some strategies that comply with the WHO and PAHO recommendations for action plans on dementia, which are mentioned in the Position Statement and Report of the National Institute of Geriatrics (INGER) and the National Academy of Medicine (Academia Nacional de Medicina de México, 2017), such as these:

  • Development of evidence-based data created through the compilation of available national evidence on the epidemiology and burden of dementia, based on information from the Mexican Health & Aging Study (Wong et al., 2017), The 10/66 Dementia Research Group study (Prina et al., 2017), and the 2012 National Health and Nutrition Survey (Romero-Martínez et al., 2013).
  • Development of education programs for health professionals in primary care, such as the Alzheimer’s and dementias courses for health professionals, by the National Institute of Geriatrics.
  • Generate and disseminate information and materials for primary carers.
  • Specialised trainings in cognitive aging and dementias at the National Institute of Neurology and Neurosurgery, the specialty in Geriatric Neurology taught at the National Institute of Medical Sciences and Nutrition, and the course in Psycho-geriatrics taught at the National Institute of Psychiatry.
  • Clinical practice guidelines, two clinical practice guidelines for dementia from Secretary of Health, one for Alzheimer’s disease and one for Vascular dementia, with the aim of contributing to increase the quality and effectiveness of medical dementia care.
References:

Academia Nacional de Medicina de México. (2017). La Enfermedad de Alzheimer y otras demencias como problema nacional de salud. Documento de postura (L. Robledo, Maria. Peña, Paloma. Rojas, & A. Martinez, Eds.; 1a edición). Intersistemas. https://www.anmm.org.mx/publicaciones/ultimas_publicaciones/ANM-ALZHEIMER.pdf

Prina, A. M., Acosta, D., Acosta, I., Guerra, M., Huang, Y., Jotheeswaran, A. T., Jimenez-Velazquez, I. Z., Liu, Z., Llibre Rodriguez, J. J., Salas, A., Sosa, A. L., Williams, J. D., & Prince, M. (2017). Cohort Profile: The 10/66 study. International Journal of Epidemiology, 46(2), 406–406i. https://doi.org/10.1093/ije/dyw056

Romero-Martínez, M., Shamah-Levy, T., Franco-Núñez, A., Villalpando, S., Cuevas-Nasu, L., Pablo Gutiérrez, J., & Rivera-Dommarco, J. (2013). Encuesta nacional de salud y nutrición 2012: diseño y cobertura. [National Health and Nutrition Survey 2012: design and coverage]. Salud Publica Mex, 55(2), S332-S340 (in Spanish). https://doi.org/10.21149/spm.v55s2.5132

Wong, R., Michaels-Obregon, A., & Palloni, A. (2017). Cohort Profile: The Mexican Health and Aging Study (MHAS). International Journal of Epidemiology, 46(2), e2. https://doi.org/10.1093/ije/dyu263

Key goals of “The National Policy for Integrated Care for People Living with Alzheimer’s Disease and other Dementias” are: to offer support for people living with dementia to live as independently as possible, to offer a healthcare system that support the family carers to cope with dementia challenges, to support health professionals training in dementia, to prioritize scientific research on dementia.

The Indonesian dementia national plan aims to manage Alzheimer’s disease and other dementias, and to enable healthy and productive ageing. The plan has three main objectives:

  1. Mainstreaming efforts to achieve healthy brains for productive ageing through a life-cycle approach at every level of national development,
  2. Improvement of service quality towards cognitive impairment and dementia,
  3. Strengthening of managerial aspects to optimize efforts towards healthy brains.

The strategy uses a life-cycle approach, with emphasis on quality-of-service improvement and strengthening managerial capacity (Ministry of Health Republic of Indonesia, 2015b).

There are seven action steps in this national dementia strategy:

  1. ‘Campaign on Public Awareness and Promotion of Healthy Lifestyles,
  2. Advocacy of human rights for people with dementia and their caregivers,
  3. Ensuring access and information of quality services,
  4. Implementation of early detection, diagnosis, and holistic management of cognitive disorders and dementia,
  5. Establishment of System to Reinforce professional and sustainable human resources,
  6. Establishment of System to Reinforce Cognitive Health Programs as main factor to increase literacy of nation based on life course approach,
  7. Implementation and Application of Research on cognition and dementia’ (Ministry of Health Republic of Indonesia, 2015a, pp.5-6).
References:

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.

Ministry of Health Republic of Indonesia. (2015b). National Strategy: Management of Alzheimer and Other Dementia Diseases: Towards Healthy and Productive Older Persons. Ministry of Health Republic of Indonesia.

The central objective of the Alzheimer’s Action Plan and other dementias is to promote the well-being of people with Alzheimer’s disease and related diseases and their families by strengthening the response of the Mexican Health System, in synergy with all responsible institutions. The main strategies of the Plan are (Gutiérrez-Robledo & Arrieta-Cruz, 2014):

  • To prevent and promote mental health through public policy that considers mental health from a life-course perspective, that is, it considers preventing risk factors known as diabetes and hypertension while promoting active and healthy aging.
  • To improve access to health services at all levels of care with a multidisciplinary approach, encompassing not only the hospital setting but also the community setting; through a long-term care perspective, including the establishment and maintenance of day centres for the care of older adults with dementia in their early stages.
  • To identify and diagnose older adults with dementia in a timely manner through a comprehensive, multidisciplinary evaluation that reduces the impact of disability and dependency by training health professionals who are at the first level of care and the appropriate use of current screening instruments.
  • To increase the number of personnel trained to treat people with dementia through permanent and constantly updated training programmes, from an inclusive perspective, considering that the care of the elderly person with dementia implies a multidisciplinary team.
  • To raise society’s awareness of the importance of dementia as a public health problem in order to prevent abuse and discrimination of older adults with dementia and to recognise the importance of formal and informal carers.
  • To increase research, from all areas of knowledge involved in the phenomenon, emphasising applied research studies, favouring the link between different institutions and scientific groups.
  • To continuously evaluate the impact of each of the proposed actions through the development of indicators.
  • To provide long-term care in the later stages of the disease.
References:

Gutiérrez-Robledo, L., & Arrieta-Cruz, I. (2014). Plan de Acción Alzheimer y otras demencias, México 2014. http://diariote.mx/docs/plan_alzheimer_WEB.pdf

Policies for older people and the law projects described above try to address some needs of people living with dementia. Regarding the participation of families/carers in the development of policies, it still does not seem to be a reality in Brazil. However, generally speaking, at times, documents under discussion are being made available for public consultation over a period of time. For example, families, carers, and patients were able to make a contribution through public consultation when the Alzheimer’s Disease Clinical Therapeutic Protocol was developed (Brazilian Ministry of Health, 2017c).

References:

Brazilian Ministry of Health. (2017c). PCDT Alzheimer. Brazilian Ministry of Health.

There are no policies or plans to our knowledge that have currently been developed for dementia in India. However, during the development of the Dementia India Strategy document, ARDSI has involved persons living with dementia  (ARDSI, 2018).

References:

Alzheimer’s and Related Disorders Society of India.  (2018). Dementia India Strategy Report. Alzheimer Disease International. Available from: https://ardsi.org/pdf/Dementia%20India%20Strategy%20Report%202018.pdf

There is no mention in national plan that people living with dementia were directly involved in its development. However, families/carers were represented during the development through non-governmental associations, Alzheimer’s Indonesia (ALZI), which was one of the actors involved in making the national strategic plans (Juliyah & Andry, 2016).

The second action step of this national strategy advocates the human rights of people with dementia and their caregivers. The key indicators to achieve this are protection of people with dementia through existing regulations such as those formulated by the Ministry of Home Affairs, advocacy efforts on human rights, formation of regional caregiver support groups, and realisation of health referral system for dementia (Ministry of Health Republic of Indonesia, 2015b).

References:

Juliyah, & Andry, G. (2016). Strategi Nasional Penanggulangan Demensia dan Alzheimer Diluncurkan. Info Publik. http://infopublik.id/read/148368/strategi-nasional-penanggulangan-demensia-dan-alzheimer-diluncurkan-.html

Ministry of Health Republic of Indonesia. (2015b). National Strategy: Management of Alzheimer and Other Dementia Diseases: Towards Healthy and Productive Older Persons. Ministry of Health Republic of Indonesia.

There was no direct participation of people living with dementia. However, there was participation of civil organisations focused on the care of people with dementia.

The plan has not been fully operationalised.

No information was found about that.

Please, refer to part 2 on health financing.

No specific operational resources were mentioned in the plan, but the seven action steps were meant to be backed up by increasing resources from both the central and local governments. According to information from the ADI website, the government aimed to invest approximately $105,000 during the first year, but no information could be found on the specific posts for this budget (Alzheimer’s Disease International, 2016). Several sources of funding at national level were mentioned in the plan: the national budget (Anggaran Pendapatan dan Belanja Nasional), the regional government budget (Anggaran Pendapatan Belanja Daerah), international organisations, NGOs and community-based organisations, private sector, and businesses, but there was no mention of the amount of funding from each of the sources (Ministry of Health Republic of Indonesia, 2015c).

References:

Alzheimer’s Disease International. (2016). National Dementia Plan launched in Indonesia. https://www.alz.co.uk/news/national-dementia-plan-launched-in-indonesia

Ministry of Health Republic of Indonesia. (2015c). Strategic Planning Ministry of Health 2015-2019. In Ministry of Health RI. Available at: http://www.nationalplanningcycles.org/sites/default/files/planning_cycle_repository/indonesia/restra_2015_translated_1.pdf

No resources have been allocated towards the implementation of specific activities included in the Plan. The actions that have been carried out have been financed directly by the institutions and civil society organisations.

Yes. In cases where policies are not implemented, a person or organization that feel themselves in disadvantage for not having their rights protected may file a lawsuit against the organization or a writ of mandamus, depending on the case. The legal consequences will vary based on each situation, but these consequences may be payments of fines or for moral damages, the obligation of following what is stated in the policy etc. (Presidency of Republic of Brazil, 1988, 2009).

References:

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

Presidency of Republic of Brazil. (2009). Lei 12016. http://www.planalto.gov.br/ccivil_03/_ato2007-2010/2009/lei/l12016.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 the elderly 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.

There has not been any document indicating direct consequences of not implementing the policy. However, existing regulation on older people’s welfare mentions legal consequences for people/institutions deliberately not providing service to improve older people’s welfare (UU no. 13 No. 1998) (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). The national dementia plan protects people with dementia through existing regulation, provided that the person with dementia qualifies as an older adult.

References:

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).

The Plan does not include consequences or penalties of non-implementation. With respect to the protection of older people’s rights or other human rights, there are different institutions that are in charge of granting these or pursuing those who violate them, such as the Mexico City Specialized Agency for the Care of Older Adults Victims of Family Violence and the National Human Rights Commission or the country’s Ombudsman institution. However, there are no specific provisions for people with dementia within these structures or programs.