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Report on the dementia situation in India

 

Executive summary: the Dementia Care Landscape in India

Suvarna Alladi1, Jayeeta Rajagopalan1, Saadiya Hurzuk2, Meera Pattabiraman2, Narendhar R2, Priya Treesa Thomas3, Vibhasri R Gurjal4, Divya Ballal5, Indrani Gupta6, Archisman Mohapatra7, Yogeshwar Kalkonde8, Girish N Rao9, Klara Lorenz-Dant10, Adelina Comas-Herrera10, Wendy Weidner 11, Martin Knapp10

INTRODUCTION

Dementia is a chronic progressive neurological disorder that is reported as the second leading cause of total deaths due to neurological disorders in India1. The Global Burden of Disease study reports an estimated 3.8 million people were living with dementia in 2019 in India, with this number expected to rise by 197% to 11.4 million by 20502. As a current and impending public health challenge, there is an urgent need to understand the current dementia care context in India to aid in facilitating the development of dementia specific government policies and programmes that work towards improving the quality of life of those living with the condition and further reduce the substantial economic costs of dementia to society.

This executive summary provides a brief overview of the in-depth desk review of the dementia care landscape in India, which was conducted as part of the Strengthening Responses to Dementia in Developing Countries (STRiDE) project led by the London School of Economics and Political Science (LSE) in the UK and the National Institute of Mental Health and Neurosciences (NIMHANS) and Alzheimer’s and Related Disorders Society of India (ARDSI) in India.

 

CONTEXT

 

Overall Country

India has a population of 1.3 billion3 and the majority (68.8% as per Census 2011) of this population resides in rural areas4. It is estimated that around 10.1% of the population is comprised of individuals aged 60 and above in 2021 and this is anticipated to rise to almost 15% by 20365. This is a significant concern as dementia is more prevalent in older age groups.

 

Health System

The public primary healthcare system consists of a tiered network of health facilities 6, the type of facilities present varies across rural and urban settings7. Persons that use the public health system in rural or urban areas can be referred to district or tertiary level government hospitals that provide secondary/tertiary care 6,7, although such services are often accessed on a walk-in basis. Urban areas have more choice with respect to health services, with a larger concentration of private providers in particular providing secondary and tertiary care services 8.

Utilization. The percentage of households that used healthcare services in the public sector and private sector was reported as 45% and 51% in 2015-2016 respectively as per the National Family Health Survey-49.

Financing. Public health services are generally free of cost or subsidized based on income level. However, supply side constraints in the public sector and perceptions of better-quality services in the private sector, lead persons to utilize private care services, which are associated with significant Out-Of-Pocket Expenditures (OOPE) 7,10. OOPE contributed to 48.8% of Total Health Expenditure (THE) in 2017-201811.

Move towards Universal Health Coverage (UHC). The government has taken steps towards improving financial protection and achieving universal health coverage through the launch of the Ayushman Bharat (AB) programme in 2018 12. Ayushman Bharat comprises  two main components: 1) The Pradhan Mantri Jan Arogya Yojana (PM-JAY) is a government funded health insurance scheme that offers socioeconomically disadvantaged families a benefit cover of Rs 5 lakh per year for hospitalizations12; 2) The Health and Wellness Centres (HWCs) scheme that is converting existing primary health care infrastructure into HWCs, thereby expanding the range of services (including elderly and palliative care services) offered to provide more comprehensive care at the primary level 12.

 

Long-term Care System

There is no organized public health delivery system which addresses long-term care needs in India. While long-term care facilities such as old age homes, residential care centres, day care centres exist, they are very limited in number, predominantly provided by private and not-for-profit organizations and associated with Out-Of-Pocket costs13. As a result of this substantial gap in formal long-term care service provision, families predominantly provide long-term care in their own homes in India.

 

DEMENTIA CARE LANDSCAPE IN INDIA

 

Policy and Programmes:

National Level. There is no dementia-specific national document in place by the Government of India. However, The National Policy on Older Persons (NPOP, 1999) recognizes the importance of promoting well-being of senior citizens 14. In addition, there are several national level programmes under the Ministry of Health and Family Welfare (MoHFW) and/or Ministry of Social Justice and Empowerment (MSJE) that are applicable to persons with dementia. The major programmes include: National Programme for Healthcare of the Elderly (NPHCE)15, National Program for Prevention and Control of Cancer, Diabetes, Cardiovascular diseases (CVD) and Stroke (NPCDCS)16, National Mental Health Programme (NMHP)17, National Programme for Palliative Care (NPPC)18, Atal Vayo Abhyudaya Yojana (AVYAY)19 and Ayushman Bharat12.

State Level. There are a few state level initiatives: 1) The Department of Social Justice, Government of Kerala and the Kerala Social Security Mission (KSSM) with Alzheimer’s and Related Disorders Society of India (ARDSI) have been jointly implementing the Kerala State Initiative on Dementia (KSID) since 2014, with the aim of increasing awareness and reducing the treatment gap for dementia in the state 20; 2) The Department of Health and Family Welfare, Government of Karnataka, NITI-Aayog and the National Institute of Mental Health and Neurosciences (NIMHANS) launched the Karnataka Brain Health Initiative (KBHI) in 2022, which aims to use evidence-based tools/protocols to diagnose and manage neurological conditions including dementia across primary, secondary and tertiary levels of health care. 21, 22.

 

Legislation:

While there are no laws specifically protecting the rights of persons with dementia and their caregivers in the country, there is legislation in place to protect the rights of older people, persons living with mental health conditions and disabilities that are relevant or applicable to persons with dementia. These include: The Maintenance and Welfare of Parents and Senior Citizens Act 200723, the Rights of Persons with Disabilities Act 2016 24 and the Mental Health Care Act 2017 25.

 

Dementia Awareness and Stigma

Low awareness and stigma associated with dementia is highly prevalent among both the general public and health professionals, contributing to delays in help-seeking and diagnosis 13. Efforts have been made to raise dementia awareness in the country through targeted awareness campaigns as well as state level initiatives. ARDSI, for example, has conducted several dementia public awareness sessions to raise awareness among the general public and medical professionals. However, these campaigns have primarily been limited to urban areas.

 

Dementia Prevalence, Risk Reduction and Prevention:

Prevalence: Meta-analysis of individual studies conducted across different regions of the country have reported pooled prevalence estimates to range from 3.4%  to 4.4% for dementia in India26, 27. The variations reported may be attributed to differences in various factors and methodological approach adopted28.

Risk reduction and Prevention. Identified potentially modifiable risk factors for dementia in India include low education in early life, mid-life hearing loss, mid-life hypertension, mid-life obesity, later-life smoking, later-life depression, later-life physical inactivity, later-life social isolation and later-life diabetes 29. If these risk factors are addressed, it may potentially delay/prevent up to 41% of dementia cases in the country29. While no national programme/policy specifically addresses the identified risk factors for dementia, risk reduction and prevention can be addressed in part through few major programmes/policies. For example, the National Program for Prevention and Control of Cancer, Diabetes, Cardiovascular Diseases, and Stroke (NPCDCS) 16 addresses risk factors such as hypertension, diabetes, physical inactivity; the National Mental Health Programme17 meanwhile addresses depression.

 

Dementia Diagnosis, Treatment and Support:

Overview. Only 1 in 10 persons with dementia receive any diagnosis, treatment, or care in India30. This large treatment gap can be attributed lack of awareness regarding the condition among the public and general health professionals, challenges in diagnosing cognitive impairment in a setting of educational heterogeneity and diversity in languages, low availability and accessibility to health services in addition to a significant shortage of specialists trained to diagnose and treat dementia30,31.

Diagnosis. Several public awareness campaigns targeting different population groups in urban areas have been conducted by ARDSI to facilitate improved help-seeking and timely diagnosis/treatment. Professional bodies including the Indian Academy of Neurology32 and medical institutions21,22 are also training primary care physicians, neurologists and psychiatrists to support the diagnosis and management of dementia. In addition, multiple tools have been developed and/or adapted to account for the considerable educational and linguistic diversity of the Indian context. These include: The Indian Council of Medical Research (ICMR) Neurocognitive Tool Box, The 10/66 Dementia Research Group dementia diagnostic algorithm, Addenbrookes Cognitive Examination (ACE) (Version III), Mini-Mental State Examination (MMSE) and Montreal Cognitive Assessments (MoCA) 33, 34, 35.

Pharmacological Treatment. The Clinical Practice Guidelines36 published by the Indian Psychiatric Society (IPS) (revised in 2018) provides an overview of the drugs recommended for management of behavioural and psychological symptoms of dementia36

Non Pharmacological Treatment. Cognitive and functional rehabilitation, which includes cognitive stimulation, speech therapy, occupational therapy and psychosocial interventions, are being offered by some neurology services in tertiary referral centres as well as by a few NGOs.

Long-term care. Few long-term care services (e.g., day care, residential care, paid home based care services) are available in large metropolitan cities, which are primarily provided by NGOs/ private organizations and associated with out-of-pocket costs13.

Palliative care. Limited palliative care services are available in India. Kerala, has a large community based palliative care network37. National efforts are being made to increase access to palliative care services at a primary level through the Ayushman Bharat Health and Wellness Centres (HWCs) scheme 12.

 

Support for Informal Caregivers:

Families can access few long-term care services (e.g., day care, residential care, paid home based care services) and some psychosocial support from few non-governmental organizations (e.g., ARDSI) or private organizations. However, many of these services are associated with out-of-pocket costs and are limited to large metropolitan cities13. Overall, there is insufficient psychosocial support or financial support for family caregivers who provide the bulk of long-term care for persons with dementia in India. This has a significant impact on the mental health and physical health of these unpaid family caregivers 38 and further contributes to high levels of economic burden experienced by households39 .

Training for informal caregivers. There are a few training and education programmes conducted by the NGOs like ARDSI that focus on dementia care. The National Institute of Social Defence (NISD) under the Ministry of Social Justice and Empowerment also has geriatric training courses40.

Policies to support informal caregivers. There are currently no specific policies (e.g., paid leave, caregiver allowance) in place to support informal caregivers of persons with dementia.

 

Dementia Research:

While there is no one document detailing the Government’s plan for dementia research, three bodies of the Government of India i.e. The Indian Council of Medical Research (ICMR), Department of Biotechnology (DBT) and Department of Science and Technology (DST) have dedicated funding towards research on dementia and have funded projects in the country in areas associated to basic biology, epidemiology, diagnosis, and brain imaging for dementia.

 

 

RECOMMENDATIONS

 

Given the gaps and challenges highlighted in the desk review with respect to the dementia care landscape in India, the recommendations below serve as initial necessary steps to address these in order to improve the quality of life of persons presently living with dementia, enhance support to their families and reduce overall burden of dementia in India:

  • Urgent need to recognize dementia as a public health priority, with the development of national policy/plans based the key action areas of the WHO Global Action Plan on Dementia41 that will also guide state efforts and promote the development of state specific plans for dementia that will consider more regional/context specific factors.

 

  • Enhanced coordination between the Ministry of Health and Family Welfare (MoHFW) and Ministry of Social Justice and Empowerment (MSJE) is needed to develop and strengthen coordination and integration of dementia among existing national programmes to account for the multi-disciplinary nature of care that is essential for persons with dementia.

 

  • Increased awareness of dementia among both the general public and health professionals. It is critical that greater emphasis on dementia is placed in the undergraduate curriculum. Guidelines are in development by the Indian Academy of Neurology (IAN) to aid clinicians in facilitating diagnosis and management of dementia. Community health workers also need to be trained to screen for dementia.

 

  • Establishment of a national level registry for dementia to facilitate routine monitoring of persons with dementia is essential to determine dementia prevalence and also facilitate effective care coordination for those diagnosed with the condition.

 

  • Greater investment into research on dementia prevention is essential. There is a further need to identify regional/state specific risk factors for dementia to support evidence based and localized prevention strategies. This is key, as almost 41% of dementia cases can potentially be prevented/delayed by addressing key risk factors in India 29.

 

  • Provision of support for persons with dementia and informal caregivers through community-based interventions.

 

  • Ensure dementia care services are better integrated into existing programmes such as Ayushman Bharat in order to facilitate improvements in care service delivery for persons with dementia and their families.

 

Citation:

Alladi S., Rajagopalan J., Hurzuk S., Pattabiraman M., Narendhar R., Thomas P.T., Gurjal V.R., Ballal D., Gupta I., Mohapatra A., Kalkonde Y., Rao G.N., Lorenz-Dant K., Comas-Herrera A., Weidner W., Knapp M. (2022)  Executive Summary. The dementia care landscape in India. STRiDE Desk Review. CPEC, London School of Economics and Political Science, London.

Author affiliations:

  1. Department of Neurology, National Institute of Mental Health and Neurosciences (NIMHANS), Bangalore, India.
  2. Alzheimer’s and Related Disorders Society of India (ARDSI), India
  3. Department of Psychiatric Social Work, National Institute of Mental Health and Neurosciences, Bangalore, India
  4. Department of Psychology, Mount Carmel College, Bangalore, India
  5. Department of Psychology, CHRIST (Deemed to be University), Bangalore, India
  6. Health Policy Research Unit, (HPRU) Institute of Economic Growth, Delhi, India
  7. GRID Council, Noida, India
  8. Sangwari, Surguja, Chhattisgarh, India
  9. Centre for Public Health, National Institute of Mental Health and Neurosciences (NIMHANS), Bangalore, India.
  10. Care Policy Evaluation Centre (CPEC), The London School of Economics of Political Science (LSE), London, United Kingdom.
  11. Alzheimer’s Disease International (ADI), London, United Kingdom.

 

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