DESK REVIEWS | 11.02. Policy gaps

DESK REVIEW | 11.02. Policy gaps

  • Although dementia is included in the portfolio of the Ministry of Health and people living with dementia are included in policies for older people, there is no established policy/plan specific for dementia. However, a national dementia plan has been discussed and approved by the Senate.
  • There is no dementia-specific representative in the government.
  • There is a lack of clear information on whether and how families/carers of people living with dementia are involved in the development of any policy/plans/document related to dementia.
  • There is lack of information on targets, indicators, timelines, and assessments regarding policies and plans.
  • There needs to exist more dementia-specific documents operationalized at subnational levels.
  • There is no description relating to the key actors and stakeholders of the healthcare policy documents.
  • In general, there is no explicit addressing of sustainability (i.e., financing, political & social commitment) in the policies that include older people.
  • There is lack of policies and plans that include actions for dementia research and innovation.
  • There is no legislation aiming to end discrimination against people living with dementia and their family carers.
  • There is no policy or care pathway specifically developed for people living with dementia.
  • There is a lack of support for family/unpaid care such as social protection, payments (cash transfer), and respite services for carers as well as lack of employment policies for family/unpaid carers.
  • Regarding people living with dementia, there is a lack of these social protection mechanisms: employment protection, credit social contributors, tax allowances, free companions’ fares.

There is no national level policy/programme specific to dementia in India. Although, there are several national level government programmes and policies that are relevant to persons with dementia (National Programme for Prevention and Cancer, Diabetes, Cardiovascular Diseases and Stroke (NPCDCS), National Programme for Palliative Care (NPPC), National Mental Health Programme (NMHP), National Programme for Healthcare of the Elderly (NPHCE), and Ayushman Bharat (AB-PMJAY and AB-HWCs) etc.). Enhancing the integration of the multi-disciplinary needs of persons with dementia across these existing programmes is crucial. In addition, few state-level programmes such as the Kerala State Initiative on Dementia (KSID) in Kerala and the Karnataka Brain Health Initiative (KBHI) in Karnataka are specifically targeting improvements in areas such as awareness and service delivery for persons with dementia (Alladi, 2022; Karnataka Brain Health Initiative [KBHI], 2022; Social Justice Department, 2014).

References:

Alladi. S (2022). Primary Health Care doctors training by neurologists. Twitter. Available from: https://twitter.com/alladi_suvarna/status/1502244487191416833?cxt=HHwWgsCqjdzZhdkpAAAA

Karnataka Brain Health Initiative (2022). Forum for Karnataka Brain Health Initiative. National Institute of Mental Health and Neurosciences. Available from: https://brainhealthnimhans.in/#

Social Justice Department and ARDSI (2014). Kerala State Initiative on Dementia. Alzheimer’s Disease International.

With the current community dementia attribution to witchcraft, inappropriate use of local idioms of dementia, there is a need to create awareness on dementia, reduce stigma by demystifying myths and misconceptions, and develop guidelines on dementia care and policies on protection of unpaid caregivers.

The national dementia plan has not been followed up, nor have resources been designated for its implementation. There is a lack of inter-sector coordination/collaboration. Dementia and mental health are not recognised as public health priorities. No public information campaigns are in place. There is lack of awareness. Lack of certification and regulation of informal care workers and lack of a regulatory body that oversees their performance and working conditions, are key issues.

There is no national or provincial dementia plan or strategic framework in South Africa that guides the care, treatment and support needs for persons living with dementia and their families. There is however an Older Person’s Act (no.13 of 2006) and an Older Persons’ Programme, but these are not dementia-specific. Policy developments for dementia also needs to include a focus on HIV-associated dementia (HAD) that, due to the high prevalence of HIV/AIDS in South Africa, changes the landscape of age-associated dementias to include persons 40 years and older (Robbins, Remien, Mellins, Joska, & Stein, 2011; Kalaria et al., 2008). Another important policy gap relates to the legal environment in South Africa that does not cater for dementia-specific needs such as enduring power of attorney and ‘living wills’ for persons living with dementia. South Africa lacks legislation that support decision-making in persons with impaired capacity and needs assisted decision-making provisions or a provision for an enduring power of attorney (Marilyn, 2015). The latter is practiced in other parts of the world, however, does not currently form part of South African law despite being recommended (just over 3 decades ago) in 1988 by the South African Law Commission (Meyer, 2016).

References:

Kalaria, R. N., Maestre, G. E., Arizaga, R., Friedland, R. P., Galasko, D., Hall, K., Luchsinger, J. A., Ogunniyi, A., Perry, E. K., Potocnik, F., Prince, M., Stewart, R., Wimo, A., Zhang, Z. X., & Antuono, P. (2008). Alzheimer’s disease and vascular dementia in developing countries: prevalence, management, and risk factors. The Lancet Neurology, 7(9), 812–826. https://doi.org/10.1016/S1474-4422(08)70169-8

Marilyn, H. (2015). Alzheimer’s – “The window of opportunity.” YE! Available from: https://youve-earned-it.co.za/finance/alzheimers-the-window-of-opportunity/

Meyer. (2016). Legal positions of persons incapable of managing their own affairs.

Robbins, R. N., Remien, R. H., Mellins, C. A., Joska, J. A., & Stein, D. J. (2011). Screening for HIV-Associated Dementia in South Africa: Potentials and Pitfalls of Task-Shifting. AIDS Patient Care and STDs, 25(10), 587–593. https://doi.org/10.1089/apc.2011.0154