DESK REVIEWS | 04.08. The policy process
DESK REVIEW | 04.08. The policy process
Brazil’s last presidential election was in October 2018 and the new government started its activities in January 2019. As many changes are still taking place in this new government, it is difficult to predict potential dementia policy changes over the next years. We are aware that a new department was created this year in the Ministry of Health (Secretaria de Atenção Primária) and dementia is one of their priorities. Prof. Cleusa Ferri has been invited to go to Brasilia to talk to the Secretary of that Secretariat.
There are certain activities that may influence policy for dementia in the future. The ARDSI has submitted a draft strategy report in 2018 which provides an overview of targets and activities that are needed in a national dementia policy (ARDSI, 2018). This is available to view online at: https://ardsi.org/pdf/Dementia%20India%20Strategy%20Report%202018.pdf
More recently, the Department of Health and Family Welfare, Government of Karnataka, NITI-Aayog and the National Institute of Mental Health and Neurosciences (NIMHANS) have launched the Karnataka Brain Health Initiative (KBHI) (KBHI, 2022). KBHI aims to address neurological disease burden (including dementia) through using evidence-based tools/protocols to diagnose and manage dementia and includes training of primary health care physicians to reduce delays in diagnosis and facilitate timely treatment (Alladi, 2022; KBHI, 2022).
Alladi. S (2022). Primary Health Care doctors training by neurologists. Twitter. Available from: https://twitter.com/alladi_suvarna/status/1502244487191416833?cxt=HHwWgsCqjdzZhdkpAAAA
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
Karnataka Brain Health Initiative (2022). Forum for Karnataka Brain Health Initiative. National Institute of Mental Health and Neurosciences. Available from: https://brainhealthnimhans.in/#
Currently, the Ministry of Health, facilitated by Africa Mental Health Research and Training Foundation and ADOK is developing a National dementia Plan with funding from the STRiDE project and London School of Economics (London School of Economics (LSE), 2018; C. Musyimi et al., 2019). This is expected to increase awareness on dementia in community settings through evidence-based tools. Furthermore, members of the project work towards making dementia care a priority at policy level. The expected knowledge increase around dementia care is likely to result in a rise in the number of people receiving a timely diagnosis and adequate care and support for people with dementia and their carers. The aim of STRiDE is to build capacity to support the development, implementation, and evaluation of national strategies to deliver appropriate, equitable, effective, and affordable dementia care. STRiDE will support the development of a National Dementia Plan by offering recommendations based on a thorough situational analysis and other scientific results from the project. Following these changes, it can be expected that through future funding, guidelines, and protocols, dementia care in Kenya in future will be addressing the needs of people living with dementia, their families and those of health and long-term care professionals.
HelpAge International is also taking the lead in collaboration with Ministry of Health to develop a community care package – training manual for the care of older people in Kenya. It is expected that this manual will cover issues around dementia since it is intended to cover non-communicable diseases including mental illness (HelpAge International, 2019). Discussions around development of healthy ageing strategy are underway through the same partnership. This could result in dementia awareness and addressing risk factors related to dementia within community settings. Africa Mental Health Research and Training Foundation (AMHRTF) and ADOK are part of the team involved in the development of this manual.
HelpAge International. (2019). Terms of Reference for Development of Home Based Care (HBC)/Community care Package – Training Manual for the care of Older People in Kenya and Mozambique. https://www.helpage.org/silo/files/consultancy-on-development-of-hbc-package.pdf
London School of Economics (LSE). (2018). Strengthening Responses to Dementia in Developing Countries (STRiDE). https://www.lse.ac.uk/cpec/research/projects/dementia/stride
Musyimi, C., Mutunga, E., & Ndetei, D. (2019). Stigma and dementia care in Kenya: Strengthening Responses to Dementia in Developing Countries (STRiDE) Project. In World Alzheimer Report 2019: Attitudes to dementia (pp. 121–122). London, UK: Alzheimer’s Disease International. https://www.alzint.org/u/WorldAlzheimerReport2019.pdf
The South African Human Rights Commission (SAHRC) has submitted their recommendations (SAHRC, 2017b) on the Older Persons Amendment Bill in June 2017 (Older Persons Act: Older Persons Amendment Bill, 2017: Comments Invited, 2017). These recommendations include revisions, for example, of (1) definitions, (2) registration clauses added with regards to assisted living facilities, and (3) registration of caregivers to be supervised by a registered nurse. Recommendations for policy changes are related to protecting the rights and care of older persons in general and not dementia-specific. Based on this review, it is unclear if these recommendations have been accepted and if there are expected changes to policies related to the care of older persons (and dementia) in the next 5 years.
Older Persons Act: Older Persons Amendment Bill, 2017: Comments invited, 1 (2017). www.gpwonline.co.za
SAHRC. (2017b). South African Human Rights Commission Older Persons Amendment Bill. Available from: https://www.sahrc.org.za/home/21/files/SAHRC%20Submission%20on%20Older%20Persons%20Bill-%20Dept%20Soc%20Dev-%2030.6.17.pdf
The Asian Development Bank (ADB) is running a regional project on Developing Innovative Community-Based Long-Term Care Systems and Services, which includes Indonesia. The project is running from 2016-2020 (ADB, 2020; Kementrian PPN/BAPPENAS & ADB, 2018). This might lead to a change in policy particularly regarding long-term care in the next few years.
ADB. (2020). Regional: Developing Innovative Community-Based Long-Term Care Systems and Services. https://www.adb.org/projects/53370-001/main
Kementrian PPN/BAPPENAS, & ADB. (2018). Workshop on Development of the National Strategic Plan for Long-term Care. Workshop on Development of the National Strategic Plan for Long-Term Care.
The current discussions on training and capacity building existing community providers through STRiDE and training manual will result in health systems strengthening at the county level. The use of existing personnel will result in sustainability of the activities and since dementia will be covered as part of the other modules in the training manual, part of dementia financing is expected to be incorporated within these programmes. The delay may occur in uptake of the manual or limited finances to train community provides.
According to a member of the Secretariat of Primary Attention from the health ministry, currently there are two big gaps in services provision which motivate priority actions. These gaps are the neurodevelopment (early childhood) and the neurodegeneration (older people living with dementia).
The development of an LTC system is driven by the ADB. ‘The country diagnostic studies conducted… in six countries (Indonesia, Mongolia, Sri Lanka, Thailand, Tonga, and Vietnam) have revealed large deficits in LTC services, especially those providing affordable and quality care. In each country, developing community-based services has emerged as a priority’ (ADB, 2020).
ADB. (2020). Regional: Developing Innovative Community-Based Long-Term Care Systems and Services. https://www.adb.org/projects/53370-001/main
The Government of Kenya is committed to supporting community health initiatives and accelerating the achievement of the Kenya Health Strategic Sector goals and providing support to Vision 2030 (Ministry of Health, 2014b). The Kenyan Government developmental initiatives, such as the Big4 Agenda and Vision 2030, must be realized by empowering communities to lead their own development (The Movement for Community-led Development, 2019).
Ministry of Health. (2014b). Community Health Volunteers (CHVs) basic modules handbook. http://guidelines.health.go.ke:8000/media/CHV_handbook_PDF-F.pdf
The Movement for Community-led Development. (2019). The Community-led Development (CLD) Movement Launches Kenya Chapter. https://mcld.org/2019/01/30/launching-the-kenya-chapter/
Yes. The first National Dementia Plan is likely to be totally approved as it has been already approved by the Senate House, but it still needs approval from the Chamber of Deputies and sanction from the president of the Republic. The STRiDE Brazil team is in direct contact with government and STRiDE-Brasil may be key in these policy changes. Professor Cleusa Ferri has contact with the Ministry of Health through her work in the Health Technology Assessment and has been invited to some events to raise awareness and push dementia to the NCD agenda. Professor Nitrini from the STRiDE-Brazil Steering Committee was also invited to go to a meeting at the Chamber of Deputies with several politicians. From that meeting it was agreed that a commission would be created including civil society and politicians to take the further steps to prioritize dementia on the public health and social agenda. It seems that this, together with STRiDE Brazil activities, may accelerate the development of a national strategy in the next few years. Besides, professor Cleusa Ferri has been awarded with a grant from the Ministry of Health to develop the First Dementia National Report which will inform about various topics in dementia such as epidemiology, situation of care, costs etc.
The Ministry of National Development Planning is currently drafting a National Plan on Older People’s Welfare (Kementrian Koordinator Bidang Pembangunan Manusia dan Kebudayaan RI, 2020) and dementia might be included in this plan.
Kementrian Koordinator Bidang Pembangunan Manusia dan Kebudayaan RI. (2020). Tanggapan Terkait White Paper “Pemenuhan hak-hak lansia untuk hidup setara, sejahtera dan bermartabat.” Presentasi.
We are living a complex political time. It is hard to say what is going to happen in the near future. The 2019 pension reform is estimated to save R$800 billion over the next ten years. However, the socioeconomic consequences and the impact on welfare through this reform are yet to be understood. Besides, the Covid-19 pandemic has raised different priorities in terms of healthcare systems in Brazil and the consequences on the population are still difficult to estimate, as the pandemic is still in place.
The following strategies described in earlier sections are likely to contribute to increase in access to care for persons dementia and/or increase in treatment guidelines on dementia care:
- Increase in the number of households receiving older persons and persons with severe disability cash transfers
- 66% (31 out of 47 counties) coverage of hospital based palliative care services
- The Constitution of Kenya 2010, Article 57, mandates the state to take steps to make sure that the rights of the elderly are protected government and private partnerships
- Involvement of NGOs with the Ministry of Health in task-sharing approaches and development of training manuals for community health volunteers
- Involvement of different partners with the Ministry of Health in policy and plans development e.g., national dementia plan by AMHRTF and ADOK; and healthy ageing strategy by HelpAge International
- Commitment of the government in supporting community health initiatives
As previously mentioned, there are two groups working together towards the generation of a National Care System, one led by the National Institute for Women (INMUJERES) and a second one at health system level lead by the General Health Council, CSG (Consejo de Salubridad General) at the Ministry of Health and the National Institute of Geriatrics (INGER). As people with care dependency will be included as a target group, this could be a viable way to include people with dementia who have care needs as a specific target group. In addition, the inclusion of care-specific priorities in the six-year plans of three federal government institutions, opens the door to the establishment of the National Care System and long-term care policies.
No, there is nothing officially agreed about that. However, Professor Cleusa Ferri will try to review the guidelines developed in 2017 (Brazilian Ministry of Health, 2017c) through her work in the Health Technology Assessment Unit. The revision may lead to a new version that could be expected by 2022 or 2023.
Brazilian Ministry of Health. (2017c). PCDT Alzheimer. Brazilian Ministry of Health.
The Indian Academy of Neurology (2022) is currently in the process of developing new clinical guidelines to support the diagnosis and management of dementia (Indian Academy of Neurology, 2022).
Indian Academy of Neurology. (2022). Home. IAN. Available from: https://www.ianindia.org/
Yes, as the PERDOSSI clinical guideline was planned only to be effective until 2017 (PERDOSSI, 2015). However, no new guidelines have yet been published (27 February 2020).
PERDOSSI. (2015). Panduan Praktik Klinik: Diagnosis dan Penatalaksanaan Demensia. PERDOSSI.
This is possible in the long-term since there are already evidence-based guidelines that can be used in developing countries such as Kenya to identify dementia and support persons with dementia and their families i.e., the mhGAP which covers priority mental disorders including dementia (World Health Organization, 2016). New clinical guidelines could be developed but a feasible way in the short-term could be to adapt and adopt what is already available. A systematic review on the effectiveness of interventions for dementia in low- and middle-income countries that is in draft form (protocol published) (Salcher-Konrad et al., 2019) could identify what has already been tested and proven to be efficacious, for adoption in Kenya.
Salcher-Konrad, M., Naci, H., McDaid, D., Alladi, S., Oliveira, D., Fry, A., … Ndetei, D. M. (2019). Effectiveness of interventions for dementia in low-and middle-income countries: protocol for a systematic review, pairwise and network meta-analysis. BMJ Open, 9(6), e027851. https://doi.org/10.1136/bmjopen-2018-027851
World Health Organization. (2016). mhGAP Intervention Guide version 2.0. Geneva, Switzerland. https://www.who.int/publications/i/item/9789241549790
The key stakeholders that can bring about change with respect to dementia in the country are senior representatives from the Ministry of Social Justice and Empowerment and Ministry of Health and Family Welfare. Enhanced coordination between these two ministries is critical to ensure the development of a policy that takes a multidisciplinary approach to care, which is essential for the well-being of persons with dementia.
All sectors of government are expected to bring about policy change.
- Central government has supporting bodies, such as the Ministry of Health with BKKBN and the public health directorate focusing on older people which work on ageing and mental health issues. The Ministry of Social Affairs has one directorate focusing on older people’s social rehabilitation.
- Local governments can also bring policy change through their local programmes including Social Service or Health Service. Both programmes also work hand in hand with central government, the Ministry of Social Affairs, and the Ministry of Health.
The following stakeholder institutions/associations could contribute to policy change on dementia:
- Government e.g., Ministry of Health and Ministry of Labour and Social protection;
- Advocacy groups e.g., Alzheimer’s and Dementia Organization of Kenya (ADOK);
- Research organizations e.g., Africa Mental Health Research and Training Foundation (AMHRTF);
- NGO’s e.g., HelpAge International;
- National associations e.g., Kenya Hospices and Palliative Care Association (KEHPCA), private and public health care facilities.