The current population of India is 1.3 billion people, which accounts for 18% of the total global population (United Nations Department of Economic and Social Affairs, Population Division, 2017). Populations projections for 2021 state that 25.5% of the population are between the age of 0-14 years, 64.4% are between the age of 15-59 years and 10.1% are 60 years and above (National Commission of Population (NCP), 2019).

With respect to sex ratio, as per Census of India 2011 (Census of India: Gender Composition, 2011), there are reportedly 940 females to 1000 males in India.

References:

Census of India: Gender Composition (2011). Available from: https://www.census2011.co.in/sexratio.php

National Commission of Population. (2019). Census of India 2011: Population Projections for India and States 2011-2036. REPORT OF THE TECHNICAL GROUP ON POPULATION PROJECTIONS. National Health Mission. Ministry of Health and Family Welfare. Available from: https://nhm.gov.in/New_Updates_2018/Report_Population_Projection_2019.pdf

United Nations Department of Economic and Social Affairs, Population Division (2017). World Population Prospects. The 2017 Revision. Available from: https://www.un.org/development/desa/publications/world-population-prospects-the-2017-revision.html

The population density of India has increased from 324 persons per square kilometer in 2001 to 382 persons per square kilometers in 2011 (Census of India, 2011), which is an increase of 57 more people per square kilometer (Census of India, 2011). With respect to urban and rural population distribution, the Census of 2011 reports that from the total population of 1.2 billion, the rural and urban population accounted for 833.5 million (68.8%) and 377.1 million (31.2%), respectively (Chandramouli, 2011).

References:

Census of India. (2011). Density of India. Available from https://www.census2011.co.in/density.php

Chandramouli, C. (2011). RURAL URBAN DISTRIBUTION OF POPULATION: Provisional Population Totals. Available from https://hetv.org/india/india-rural-urban-distribution-of-population-2011.pdf

Key Languages

The Indian Constitution recognises 22 different languages, with Hindi as the official national language (Know India, 2020). As a multilingual country, India has one classical language known as ‘Sanskrit’, 14 modern languages, and 300 other tribal and minority languages (Fase et al., 1992).

Furthermore, most of the speech communities in India have more than one ‘language dialect’ (Fase et al., 1992). States have “linguistic autonomy”, which allows them to have their own official language along with both Hindi (national language) and English as associate languages (Fase et al., 1992, pp. 254).

Ethnic groups

There are three major ethnic groups: Dravidian (predominantly South India), Indo-Aryan (North and Central India), and Mongoloid (predominantly North-Eastern India) (Ali, 2019). In terms of religion, India is a multi-religious country in which Hinduism, Christianity, Islam, Sikhism, Buddhism and Jainism are all practiced. However, Hinduism is the dominant religion.

References:

Ali, E. (2019). Ethnic Composition of Indian Population. Available from: https://www.researchgate.net/publication/332781388_Ethnic_Composition_of_Indian_Population

Fase, W., Jaspaert, K., & Kroon, S. (1992). Maintenance and loss of minority languages. J. Benjamins.

Know India. (2020). India at a Glance. Government of India. Available from https://knowindia.india.gov.in/profile/india-at-a-glance.php

Projections made by the National Commission of Population (NCP, 2019) indicate that the total population is likely to increase from 1211 million to 1518 million between the period 2011-2036. This is a 25% overall increase at a rate of 1% per year (NCP, 2019). The population age groups set to increase during this period are those aged 60 and above (increase from 8.4% in 2011 to 14.9% in 2036), and those between 15-59 years of age (increase from 60.7 in 2011 to 64.9% in 2036) (NCP, 2019). The urban population is also further expected to increase from the 31.8% reported by Census 2011, to 38.6% (NCP, 2019).

References:

National Commission of Population (NCP). (2019). Census of India 2011: Population Projections for India and States 2011-2036. REPORT OF THE TECHNICAL GROUP ON POPULATION PROJECTIONS. National Health Mission. Ministry of Health and Family Welfare. Available from: https://nhm.gov.in/New_Updates_2018/Report_Population_Projection_2019.pdf

Life expectancy

According to the World Health Statistics report (World Health Organization, 2018), life expectancy in India is estimated to be 68.8 years on average, with 67.4 years for males and 70.3 years for females. According to the Elderly in India report (National Statistical Office, 2021), during the period between 2014-2018, the life expectancy at birth was 70.7 years for females and 68.2 years for males. Whereas the sex ratio for elderly population is projected to be 1065 females per 1000 males in 2021 (National Statistical Office, 2021). This is higher than the previous decade, wherein the sex ratio for the elderly population was reported as 1028 females per 1000 males (National Statistical Office, 2021). The report also states that the overall life expectancy has increased in both, rural and urban area in India, with life expectancy at birth having increased from 48 years (1970-1975) to 68 years (2014-2018) in rural areas and from 58.9 years (1970-1975) to 72.6 years (2014-2018) in urban areas.

Life expectancy at different ages

Life expectancy at age 0, 60, and 70 between the period 2014-2018 was reported to be 69.4 years, 18.2 years, and 11.6 years, respectively (National Statistical Office, 2021).

Median age of the population

As per the United Nation’s Department of Economic and Social Affairs, the median age of the population in India in 2015 was estimated to be 26.8 years (United Nations, Department of Economic and Social Affairs, Population Division, 2019b).

Total fertility rate

As per the National Family Health Survey-5 2019-21 (International Institute for Population Sciences (IIPS), 2021), the fertility rate (children per woman) has dropped to 2 from the 2.2 reported in 2015-16.

Total population aged 65 years and above

According to the World Bank (2020c), in 2020, the percentage of the total population aged 65 years and above was 7%.

Total dependency ratio

The World Population Prospects (United Nations Department of Economic and Social Affairs Population Division, 2019a) estimate that in 2015, the total dependency ratio (ratio of population aged 0-14 and 65 plus per 100 population 15-64) in India was 51.6 and they projected that this would decrease to 47.5 by 2050.

Old-age dependency ratio

The Elderly in India report (National Statistical Office, 2021) provides the old-age dependency ratio (number of people 60 and above per 100 working age population (15-59 years)) trends in India. According to the report the old age dependency ratio rose from 10.9% in 1961 to 14.2% in 2011. Population projections estimate that there will be a further increase concerning the old age dependency ratio to 15.7% and 20.1% in 2021 and 2031, respectively (National Statistical Office, 2021). An earlier Elderly in India report (Borah et al., 2016) states that there is an increasing trend in the gap between male and female old-age dependency ratio, which was reported in 2011 as 13.6% and 14.9%, respectively. As per the projections for 2021, this increasing trend in the gap has been consistent, with old-age dependency ratio for male and female estimated as 14.8% and 16.7%, respectively (National Statistical Office, 2021). With respect to urban and rural areas, the old age dependency ratio according to Census 2011 was 15.1% and 12.4% respectively (Borah et al., 2016; National Statistical Office, 2021). The significant difference in old-age dependency ratios between urban and rural areas has been attributed to the relatively higher proportion of working age population living in urban areas (Borah et al., 2016; National Statistical Office, 2021).

States variations

State-wise variations in elderly population exist. According to the 2011 Census, Kerala (12.6%), Goa (11.2%), and Tamil Nadu (10.4%) report the largest proportion of the elderly in their population (Borah et al., 2016). Whereas Dadra & Nagar Haveli (4.0 %), Arunachal Pradesh (4.6 %), and Meghalaya (4.7 %) report the least proportion of elderly individuals in their population in 2011 (Borah et al., 2016). In addition, population projections for 2021 estimate that the proportions of the elderly have reached 16.5% and 13.6% in Kerala and Tamil Nadu, respectively (National Statistical Office, 2021).

Future projections

It is projected that the Indian population aged 60 and over will increase from 8% in 2015 to 19% in 2050 (United Nations Population Fund (UNFPA), 2017). By the end of the century, it is estimated that 34% of the total Indian population will comprise of elderly people (aged 60+) (UNFPA, 2017).

References:

Borah, H., Shukla, P., Jain, K., Kimar, S., Prakash, C., & Gajrana, K. (2016). Elderly in India 2016.Ministry of Statistics and Programme Implementation, Government of India.

International Institute for Population Sciences (IIPS). (2021). National Family Health Survey (NFHS-5) 2019-21 India. Mumbai. http://rchiips.org/nfhs/NFHS-5_FCTS/India.pdf

National Statistical Office. (2021). Elderly in India. National Statistical Office, Ministry of Statistics and Programme Implementation. Government of India. Available from: https://www.mospi.gov.in/documents/213904/301563/Elderly%20in%20India%2020211627985144626.pdf/a4647f03-bca1-1ae2-6c0f-9fc459dad64c

United Nations Population Fund (UNFPA). (2017). ‘Caring for Our Elders: Early Responses’ – India Ageing Report – 2017. UNFPA, New Delhi, India. Available from: https://india.unfpa.org/sites/default/files/pub-pdf/India%20Ageing%20Report%20-%202017%20%28Final%20Version%29.pdf

United Nations Department of Economic and Social Affairs, Population Division (2019a). World Population Prospects 2019 – Data Query. Available, from https://population.un.org/wpp/DataQuery/

United Nations, Department of Economic and Social Affairs, Population Division (2019b). World Population Prospects 2019, Online Edition. Rev. 1.

World Health Organization. (2018). World Health Statistics Monitoring Health for SDGs. https://doi.org/Geneva: World Health Organization; 2018. Licence: CC BY-NC-SA 3.0 IGO. Available from: https://apps.who.int/iris/bitstream/handle/10665/272596/9789241565585-eng.pdf

World Bank (2020c). Proportion of population aged 65 and above. Available from: https://data.worldbank.org/indicator/SP.POP.65UP.TO.ZS

Internal migration

As per Census 2011, there were 450 million internal migrants in India, which comprise of 37% of the total population (Rajan and Bhagat, 2021). The main directions of migration reported by an earlier NSS report (2007-2008) were rural to rural (62%), urban to urban (13%) and urban to rural (5%) (Rajan and Bhagat, 2021). The states that receive the most migration are Maharashtra, Delhi, Gujarat, Tamil Nadu, Punjab, Kerala, and Karnataka as per the Census 2011 (Rajan and Bhagat, 2021).

External migration

According to the World Migration Report (International Organization for Migration, 2019), Indians account for the largest proportion of individuals living outside of their country, with 17.5 million international migrants originating from India. The largest corridor of migration from India was reported to be to the United Arab Emirates in 2019 (International Organization for Migration, 2019).

References:

International Organization for Migration. (2019). World Migration Report. Geneva: International Organization for Migration.

Rajan, I.S., Bhagat, B.R (2021). Internal migration in India: Integrating migration with development and urbanization policies. Thematic Working Group on Internal Migration and Urbanization of the Global Knowledge Partnership on Migration and Development (KNOMAD) Available from: https://www.knomad.org/sites/default/files/2021-02/Policy%20Brief%20-%20Internal%20Migrationand%20Urbanization%20-%20India%20Policy%20Brief%2012%20Feb%202021.pdf

There has been an increase in the burden of non-communicable (NCD) diseases over the past two decades, with NCD burden rising from 30% of total disease burden in 1990 to 55% of total disease burden in 2016 (Indian Council of Medical Research, Public Health Foundation of India and Institute of Health Metrics and Evaluation [ICMR, PHFI and IHME], 2017). The most considerable DALY rate increase (from 1990-2016) was observed for diabetes and ischemic heart disease (IHD) (ICMR, PHFI and IHME, 2017). In addition, there has also been a rise in NCD neurological disorders in India, with their contribution to total DALYs increasing from 4% in 1990 to 8.2% in 2019 (India State-Level Disease Burden Initiative Neurological Disorders Collaborators, 2021). Stroke, headache disorders, and epilepsy contributing most significantly to total neurological disorder DALYs in 2019 (India State-Level Disease Burden Initiative Neurological Disorders Collaborators, 2021).

Moreover, NCDs which typically present over the age of 55 in developed countries are presenting almost a decade earlier (≥45 years of age) in the Indian population (Arokiasamy, 2018). In addition, considering that communicable diseases are also highly prevalent in the country as they contribute to 27.5% of all deaths (Mohan et al., 2019), the Indian public health system faces significant challenges with this double burden of disease (Arokiasamy, 2018).

State wise variations in NCDs:

As per GBD 2019 data, the prevalence of NCDs varies across different across states. In 2019, the lowest prevalence rate was in Arunachal Pradesh, which had a prevalence rate of 91,599.98 prevalent cases per 100,000 people (90,577.05 – 92,577.86) (ICMR, PHFI and IHME, 2019). Whereas, the highest prevalence was in Kerala, with 94,140.27 prevalent cases per 100,000 people (93,473.85 – 94,765.24) (ICMR, PHFI and IHME, 2019). With respect to NCD burden, the number of deaths and Disability Adjusted Life Year’s (DALY’s) are also described. The least number of deaths was in the state of Arunachal Pradesh with 262.98 deaths per 100,000 people (214.73 – 318.26) and the highest number of deaths was in the state of Kerala – 596.35 deaths per 100,000 people (503.58 – 697.71) (ICMR, PHFI and IHME, 2019). In terms of DALY’s – the state of Arunachal Pradesh again had the lowest number of 14,675.94 per 100,000 people (12,212.71 – 17,202.98) and Tamil Nadu had the highest number of DALY’s with 23.406.3 per 100,000 people (19,820.32 – 27,314.47) (ICMR,PHFI and IHME, 2019).

References:

Arokiasamy, P. (2018). India’s escalating burden of non-communicable diseases. The Lancet Global Health, 6, e1262–e1263. https://doi.org/10.1016/S2214-109X(18)30448-0

India State-Level Disease Burden Initiative Neurological Disorders Collaborators (2021). The burden of neurological disorders across the states of India: The Global Burden of Disease Study 1990-2019. The Lancet. Global health, 9(8), e1129–e1144.

Indian Council of Medical Research, Public Health Foundation of India and Institute for Health Metrics and Evaluation (ICMR, PHFI, and IHME). (2017). India: Health of the Nation’s States-The India State-level Disease Burden Initiative, New Delhi: ICMR, PHFI and IHME. Available from: https://www.healthdata.org/sites/default/files/files/policy_report/2017/India_Health_of_the_Nation%27s_States_Report_2017.pdf

Indian Council of Medical Research, Public Health Foundation of India, and Institute for Health Metrics and Evaluation (ICMR, PHFI, and IHME). (2019). GBD India Compare Data Visualization. Available from: https://vizhub.healthdata.org/gbd-compare/

Mohan, P., Mohan, S. B., & Dutta, M. (2019). Communicable or noncommunicable diseases? Building strong primary health care systems to address double burden of disease in India. Journal of family medicine and primary care, 8(2), 326–329. https://doi.org/10.4103/jfmpc.jfmpc_67_19

HIV/AIDS

Using state level survey data, the National Aids Control Organization and Indian Council of Medical Research-National Institute of Medical Sciences (NACO and ICMR-NIMS, 2019) report estimated that the adult (15–49 years) HIV prevalence was 0.22% (0.17-0.29%) in 2019. The report found that rates differed by gender, with prevalence being higher among males at 0.24% (0.18-0.32%) compared to 0.20% (0.15-0.26%) among females. There is also a wide variation in the prevalence of HIV by State/UTs. As per the NACO and ICMR-NIMS 2019 report, the highest young adult HIV prevalence rate was reported in Mizoram, [2.32%, [1.85–2.84%]), followed by Nagaland (1.45% [1.15–1.78%]), and Manipur (1.18% [0.97–1.46%]). The lowest prevalence rates were found in Arunachal Pradesh (0.06%), Jammu and Kashmir (0.06%), and Sikkim (0.07%).

TB

According to the Global TB Report (WHO,2019a), 10 million people are infected with TB globally in 2018. India accounts for 27% of the global tuberculosis cases (WHO, 2019a).

State variations in TB:

As per GBD 2019 data, the prevalence of TB in India varies across the states. In 2019, the lowest prevalence rate was in Goa, which has a prevalence rate of 14,835.37 cases per 100,000 people (13,185.25 – 16,832.76) and the highest being in West Bengal with 37,351.82 prevalent cases per 100,000 people (33,258.47 – 41,758.29) (ICMR, PHFI and IHME, 2019). In terms of burden, the measures of the number of deaths and DALY’s are described. The least number of deaths was in Kerala 10.53 deaths per 100,000 people (8.2 – 13.15) and the highest number of deaths was in Uttar Pradesh with 45.24 deaths per 100,000 people (37.23 – 55.08 (ICMR, PHFI and IHME, 2019). With respect to DALY’s (Disability Adjusted Life years), Kerala again had the lowest number of DALY’s per 100,000 people 333.92 (268.22 – 407.48) and Uttar Pradesh had the highest number of DALY’s with 1,744.52 per 100,000 people (1,461.91– 2,074.18) (ICMR, PHFI and IHME, 2019).

According to the Burden of Disease report (National Commission on Macroeconomics and Health (NCMH), 2005), the Health and Development Initiative states that those at the greatest risk of TB are those from a lower socioeconomic status, since the disease spreads in crowded places such as schools, marketplaces, households etc. Moreover, there are also several social and economic costs of being diagnosed with TB. According to the Burden of Disease report (NCMH, 2005), if an adult is diagnosed with TB, on average, they lose 3–4 months of work time, which results in a 20%–30% loss in annual household income (NCMH, 2005). This is of significant concern as the portion of the population which is most affected by TB in India is of working age, with 89% of cases occurring amongst those 15-69 years of age (Central TB Division, 2019). This loss of household income due to illness along with paying for the costs associated with treatment could lead many households to experience catastrophic health expenditures.

 Malaria

There were approximately 228 million cases of malaria reported globally in 2019 (WHO, 2019b). Out of the 15 countries that contribute to the global malaria burden, India accounts for 3% of global malaria burden (WHO, 2019b). However, with national programs and other interventions, the country has reported a decline in malaria, with its incidence having decreased by 24% in 2017 in comparison to the previous year (WHO, 2019b).

State wise variations in Malaria:

As per GBD 2019 data, prevalence of malaria varies across the states in India. In 2019, the lowest prevalence rate was in Sikkim, which had a prevalence rate of 48.82 cases per 100,000 people (37.82 – 63.49) and the highest being in Chattisgarh with 1745 prevalent cases per 100,000 people (905.05– 3389.51) (ICMR, PHFI and IHME, 2019). With respect to burden, the number of deaths and DALYs associated with malaria are also described. The least number of deaths was in Sikkim with 0.0018 deaths per 100,000 people (0.00045 – 0.0075) and the highest number of deaths was in Odisha with 23.51 deaths per 100,000 people (8.1 – 58.11) (ICMR, PHFI and IHME, 2019). In terms of DALYs– Sikkim had the lowest number of 2.55 DALYs per 100,000 people (1.94 – 3.3) and Odisha had the highest number of DALYs with 1,455.04 per 100,000 people (540.73 – 3,375.05) (ICMR, PHFI and IHME, 2019).

Other communicable diseases

Apart from these, emergence of new forms of infections and re-emergence of several infectious diseases, mainly due to viruses are a matter of concern for India. Respiratory viral infections (e.g., H1N1, Avian influenza, H5N1, and Covid-19), arboviral infections (e.g., Chikungunya, Japanese encephalitis, and Kyasanur forest disease [KFD]) and bat-borne viral infections (e.g., Nipah viral disease and severe fever with thrombocytopenia virus [SFTV]) are the three major categories of emerging viral infections in India (Mourya et al., 2019).

The Integrated Disease Surveillance Programme (IDSP) in their 2017 surveillance report stated that a total of 1683 outbreaks were due to epidemic prone diseases (Mourya et al., 2019). Of these, 71% were caused due to viral pathogens (Mourya et al., 2019).

COVID-19:

The COVID-19 pandemic has caused unprecedented challenges to the Indian health system. While the first case in the country was confirmed on January 30^th in 2020, there has been a significant rise in cases with a total of 43 million cases and 521,691 total deaths confirmed in the country as of 30^th April 2022 (Johns Hopkins University, 2022). People with co-morbidities and the elderly have been the most affected (MoHFW, 2020; Press Information Bureau, 2020). The government has taken multiple measures to protect vulnerable populations and reduce disease spread including a complete nationwide lockdown from March 25^th to May 31^st in 2020. The government also introduced a mass vaccination campaign in phases and 633 million doses have been provided as of 30^th August 2021 (MoHFW, 2021).

References:

Central TB Division. (2019). Revised National TB Control Programme, Annual Report. Available from https://tbcindia.gov.in/WriteReadData/India%20TB%20Report%202019.pdf

Indian Council of Medical Research, Public Health Foundation of India, and Institute for Health Metrics and Evaluation (ICMR, PHFI and IHME). (2019). GBD India Compare Data Visualization. Available from: https://vizhub.healthdata.org/gbd-compare/

Johns Hopkins University (2022). Coronavirus Resource Centre. Available from: https://coronavirus.jhu.edu/map.html

Ministry of Health and Family Welfare (2020a). It is more important now to follow COVID Appropriate Behaviours because of the upcoming festival season, arrival of winter, opening up of economy: Dr. V.K. Paul [Press Information Bureau Website]. Available from: https://pib.gov.in/PressReleasePage.aspx?PRID=1664105

Ministry of Health and Family Welfare. (2021). Ministry of Health and Family Welfare. Available from: from https://mohfw.gov.in/

Mourya, D., Yadav, P., Ullas, P., Bhardwaj, S., Sahay, R., Chadha, M., …& Singh, S. (2019). Emerging/re-emerging viral diseases & new viruses on the Indian horizon. Indian Journal of Medical Research, 149(4), 447. https://doi.org/10.4103/ijmr.ijmr_1239_18

National Aids Control Organization and Indian Council for Medical Research-National Institute of Medical Science. (2019). India HIV Estimates 2019. Available from: http://naco.gov.in/sites/default/files/INDIA%20HIV%20ESTIMATES.pdf

National Commission on Macroeconomics and Health, Ministry of health & Family Welfare, Government of India. (2005). Burden of disease in the India: Background Papers, NCMH. Indian Journal of Medical Research, 124(3), 235–244.

Press Information Bureau (2020). India’s case fatality rate is 1.53% compared to 17.9% with comorbid people and 1.2% for people without comorbidities: Secretary [PIB Twitter].  Available from: https://twitter.com/pib_india/status/1315978147792211970

World Health Organization (2019a). Global Tuberculosis Report. Available from: https://www.who.int/publications/i/item/9789241565714

World Health Organization (2019b). World Malaria Report. Available from: https://www.who.int/india/health-topics/malaria#:~:text=According%20to%20the%20WMR%202019,of%2050.5%25%20compared%20with%202017.

As per the National Crime Records Bureau’s Accidental Deaths and Suicides report (National Crime Records Bureau [NCRB], 2020a) there were 3,74,397 accidental deaths and 1,53,052 deaths from suicide reported in 2020. The Crime in India report (NCRB, 2020b) states that there were 29,193 cases of violence related deaths (homicide) in 2020.

State wise variations in injuries:

As per GBD 2019 data, the prevalence of injuries of various types varies across the states. In 2019, the lowest prevalence rate was in Meghalaya, which had a prevalence rate of 16,545.72 cases per 100,000 people (15,672.39 – 17,471.5) and the highest was in Tamil Nadu with 29,116.16 prevalent cases per 100,000 people (27,570.69 – 30,738.74) (ICMR, PHFI and IHME, 2019). In terms of burden, the number of deaths and DALYs are described. The least number of deaths was in Meghalaya with 30.62 deaths per 100,000 people (22.93 – 43.12) and the highest number of deaths was in Tamil Nadu with 99.41 deaths per 100,000 people (70.01-121.01) (ICMR, PHFI and IHME, 2019). With respect to DALYs, Meghalaya had the lowest number of DALYs with 2,057.27 per 100,000 people (1664.38 – 2618.95) and Tamil Nadu had the highest number of DALYs with 5,055.08 per 100,000 people (4,054.81 – 5,944.4) (ICMR, PHFI and IHME, 2019).

References:

Indian Council of Medical Research, Public Health Foundation of India, and Institute for Health Metrics and Evaluation (ICMR, PHFI and IHME). (2019). GBD India Compare Data Visualization. Available from: https://vizhub.healthdata.org/gbd-compare/

National Crime Records Bureau. (2020a). Accidental Deaths and Suicides in India.

As per the World Bank categorisation, India is a lower-middle-income country. As the seventh largest economy in the world, in 2020, India had a Gross Domestic Product (GDP) of 2.6 trillion US dollars (World Bank, 2020a). Moreover, the GDP per capita in India was recorded as 1927 US dollars in 2020 (World Bank, 2020b).

References:

World Bank. (2020a). GDP per capita, India | Data. Available from  https://data.worldbank.org/indicator/NY.GDP.PCAP.CD?locations=IN

World Bank. (2020b). India | Data. Available from https://data.worldbank.org/country/india

The GDP composition by sector of origin shows that the services accounted for 53.9% of GDP in 2017-18, while industry, agriculture, and manufacturing accounted for 29.1%, 17.1%, and 16.7%, respectively, in the same year (Ministry of Finance, 2018).

References:

Ministry of Finance (2018). Contribution of various sectors to GDP. Press Information Bureau. Government of India. Available from: https://pib.gov.in/newsite/PrintRelease.aspx?relid=186413

The Centre’s debt-GDP ratio increased to 64.3% in 2020-2021 (RE) (Reserve Bank of India, 2021). Whereas household debt to GDP rose from 35.4% in the first quartile of 2020-2021 to 37.1% in the second quartile of 2020-2021 (Reserve Bank of India, 2021).

References:

Reserve Bank of India (2021). Press Releases. RBI Bulletin-March 2021. Government of India. Available from: https://www.rbi.org.in/Scripts/BS_PressReleaseDisplay.aspx?prid=51299

According to the World Bank (2011), the GINI index for India in 2011 was 35.7. In 2017, the Inequality-Adjusted Human Development Index (IHDI) ranked India at 130 worldwide, with a score of 0.468 (United Nations Development Programme (UNDP), 2017).

References:

United Nations Department of Economic and Social Affairs, Population Division (UNDP). (2017). World Population Prospects. The 2017 Revision. Available from: https://www.un.org/development/desa/publications/world-population-prospects-the-2017-revision.html

World Bank. (2011). GINI Index (World Bank Estimate). Available from: https://data.worldbank.org/indicator/si.pov.gini

India is at risk for several natural disasters. Out of the 7,516 km of Indian coastline, 5,700 km of coastline is prone to tsunamis and cyclones (National Disaster Management Authority, 2019). Approximately, 58.6% of the total landmass is prone to moderate to high intensity earthquakes. Moreover, 12% of land is susceptible to floods (National Disaster Management Authority, 2019) .

References:

National Disaster Management Authority. (2019). Vulnerability Profile. Government of India.

The unemployment rate for those aged 15 years and above in India was estimated to be 5.8% between 2018-2019 (Ministry of Labour and Employment, 2021). This fell to 4.8% in 2019-2020.

In the year 2019-2020, the labour force participation for those aged 15+ increased to 53.5% from 50.2% in 2018-2019 (Ministry of Labour and Employment, 2021).

References:

Ministry of Labour and Employment. (2021). Employment Situation Improves. Government of India. Available from: https://pib.gov.in/PressReleseDetailm.aspx?PRID=1779665

In 2018-2019, the proportion of workers in the non-agricultural sectors that were engaged in the informal sector was reported as 64.8% (National Statistical Office (NSO), 2020). The share of the informal non-agricultural sector was reported as 54.1% among female workers and 71.5% among male workers (National Statistical Office (NSO), 2020a).

References:

National Statistical Office (NSO). (2020a). Periodic Labour Force Survey [PLFS]. Ministry of Statistics and Programme Implementation, Government of India.

The overall literacy rate in India was reported to be 74.04% in 2011 (Census of India, 2011). As per the more recent National Sample Survey Household Consumption on Education in India (2017-2018) which surveyed 64,519 rural and 49,238 urban households, literacy rates in the those aged 7 years and above was reported as 77.7% in 2017-2018 (National Statistical Office, 2020b).The literacy rate was lower in rural areas (73.5%) than urban areas (87.7%) and literacy rates were found to be higher in males (84.7%) than in females (70.3%) (National Statistical Office, 2020b).

References:

Census of India. (2011). Literacy in India. Available from https://www.census2011.co.in/literacy.php

National Statistical Office. (2020b). Household Social Consumption on Education in India-NSS 75^th Round. Ministry of Statistics and Programme Implementation, Government of India.

Few major schemes:

The Mahatma Gandhi National Rural Employment Guarantee Act (NREGA) arranged in 2005, is one of the major social protection schemes in India (Wapling et al., 2021). Under the Ministry of Rural Development, the NREGA provides 100 days of guaranteed wage employment in a financial year for those adult members from rural households who are willing to do unskilled manual work (Vikaspedia, n.d.-a).

The Ayushamn Bharat-Pradhan Mantri Jan Arogya Yojana (AB-PMJAY) provides financial protection with respect to secondary and tertiary care (hospitalisations) to the socioeconomically disadvantaged individuals (National Health Portal, 2019).

Other social protection schemes are summarized in PART 9. There are several central government and state level social security schemes targeting various groups that are not listed.

References:

National Health Portal. (2019). Ayushman Bharat Yojana. Government of India. Available from: https://www.nhp.gov.in/ayushman-bharat-yojana_pg

Vikaspedia. (n.d.-a). Overview of MGNREGA. Government of India. Available from: https://vikaspedia.in/agriculture/policies-and-schemes/rural-employment-related-1/mgnrega/rural-employment-related

Wapling, L., Schjoedt, R., Sibum, D. (2021). Social Protection and Disability in India: Working Paper. Development Pathways Limited. Available from: https://www.developmentpathways.co.uk/wp-content/uploads/2021/02/India-disability-Feb-2021-1.pdf

The Indian subcontinent is a federal parliamentary democratic republic where the head of state is the President of India and the head of government is the Prime Minister (Nirmala, 2018). Moreover, India has a dual polity system, which is made of a central authority and state level governments (Nirmala, 2018).

References:

Nirmala, R. (2018). Politics in India:-At a Glance: A Study of Indian Political System and Elections. Available from http://www.ijhssi.org/papers/vol7(12)/Ver-2/A0712020117.pdf

The formal British rule in India was between 1857-1947. India gained independence on 15^th August 1947.

The next election is expected to be scheduled by May 2024 to constitute the 18^th Lok Sabha. The 17^th Lok Sabha (General Elections) resulted in a second consecutive victory for the Bharatya Jantha Party (BJP), which is led by Prime Minister Narendra Modi (Election Commission of India, 2019).

References:

Election Commission of India. (2019). Election Commission of India launches Voter Verification and Information Programme (VVIP) for upcoming General Elections 2019 – Press Available from https://eci.gov.in/files/file/9332-election-commission-of-india-launches-voter-verification-and-information-programme-vvip-for-upcoming-general-elections-2019/

The Corruption Perception Index ranks 180 countries and territories by their perceived levels of public sector corruption by using a scale that ranges from 0 to 100, in which 0 is associated with high levels of corruption and 100 is classified as very clean (Transparency International, 2018). In the 2018 CPI Index, India scored 41 and ranked 78 of the total 180 countries assessed (Transparency International, 2018).

References:

Transparency International. (2018). Corruption Perceptions Index 2018. Available from https://www.transparency.org/cpi2018

According to World Bank data on political stability, from the period 1996 to 2018, an average value of -1.13 points was reported for India (The Global Economy, 2019). A minimum -1.51 points was observed in 2003 and a maximum of -0.96 points was observed in 2018 (The Global Economy, 2019). India ranked 165^th on the global political stability index in 2018 (The Global Economy, 2019).

References:

The Global Economy. (2019). Political stability by country, around the world |TheGlobalEconomy.com. Available from https://www.theglobaleconomy.com/rankings/wb_political_stability/

The provision of health care to the public is enlisted as State subject in the constitution of India. Furthermore, there are references to health in the Union as well as Concurrent Lists (Government of India, n.d.). This means that the States have the opportunity for unique customization of the Union public health initiatives and introduction of state-specific services. The public health network is monitored by the Indian Public Health Standards (Ministry of Health and Family Welfare (MoHFW), 2012).

Traditionally, the public health care system in India has been rural-centric. A three-tiered network of health facilities consisting of sub centres, primary health care centres, and community health centres caters to the primary and secondary health care needs of the population, mostly in rural areas where about 2/3rd of India’s population live.

1. A Sub Centre (SC) is the first point of contact between the community and the primary health care system, and it is staffed by nurses and health workers. The minimum requirement of the SC is to have at least one auxiliary nurse midwife (ANM)/female health worker and one male health worker (Ministry of Health and Family Welfare (MoHFW), n.d.-b). SCs provide services in relation to family welfare, maternal and child health (MCH), nutrition, immunization, diarrhoea control, and control of communicable diseases programs (MoHFW, n.d.-b). Existing SCs are being converted to Health and Wellness Centres to provide an expanded range of services at a primary care level as part of the Ayushman Bharat programme (MoHFW, n.d.-b)
2. A Primary Health Centre (PHC) is the first point of contact between the village community and a medical officer (MO) — an appointed graduate physician trained in allopathic system of medicine (MBBS; Bachelor of Medicine and Bachelor of Surgery) (MoHFW, n.d.-b). Each PHC is recommended to have at least one MO along with 14 paramedical and other staff. PHCs consist of 4 to 6 beds for in-patients and act as referral units for 6 SCs (MoHFW, n.d.-b). Existing PHCs are being converted to Health and Wellness Centres to provide an expanded range of services at a primary care level as part of the Ayushman Bharat programme (MoHFW, n.d.-b)
3. Community Health Centres (CHCs) function as community hospitals. CHCs are required to staff a surgeon, physician, gynaecologist/obstetrician, and paediatrician (4 medical specialists) supported by additional team of 21 paramedical and other staff (MoHFW, n.d.-b). The CHC works as referrals for PHCs within a block (a group of villages), which is the planning and development unit of a district. The CHC also provides specialist obstetric care and specialist consultations facilities across other disciplines (MoHFW, n.d.-b). CHCs are equipped to provide round the clock emergency obstetric care services and thus, they serve as the First Referral Units (FRU) for reproductive health (MoHFW, n.d.-b).

Sub-divisional hospitals, District hospitals, and Government Medical colleges provide comprehensive speciality and super speciality care to referrals, as these may also serve as FRUs (MoHFW, n.d.-b).

Table 2.1. Size of Rural Public Health Network in India (as of March 2020) (Ministry of Health and Family Welfare, n.d.-b).

Source: MoHFW (n.d.-b); Directorate General of Health Services (2012)

Priority health challenges are addressed through an expansive set of health care programs. Traditionally, the focus has been on maternal and child health (MCH) issues and family welfare. In 2005, the National Rural Health Mission (NRHM) brought a paradigm change in the country’s approach (focused attention to ‘weaker’ in terms of infrastructure and/or public health indicators) states, brought programs, and resources under a common banner, decentralised decision making, undertook ‘communitisation’ through a new cadre of community-based health mobilisers (called Accredited Social Health Activists (ASHAs)). Given the success of the NRHM, the approach was extended to both rural and urban areas under the banner of the National Health Mission (NHM) in 2012 with two sub-missions i.e., the NRHM and the National Urban Health Mission (NUHM). Over the years, the focus has expanded beyond MCH to non-communicable diseases, mental health and geriatric care, and a series of state sponsored health insurance schemes (MohFW, n.d.-a)

The NUHM and respective municipal corporations share primary responsibility for providing health services for the urban population. The proposed urban public health infrastructure consists of UPHCs and UCHCs that each cater to approximately 50,000 and 2.5 to 5 lakh population respectively in urban areas to provide equitable and quality care to the urban poor (MoHFW, 2013; MoHFW, n.d.-b).

Table 2.2. Frontline workers in the Public Health System in India

In 2018, considerable changes were initiated to improve the existing primary health infrastructure as per recommendations of the National Health Policy of 2017 (National Health Portal, 2019). The Ayushman Bharat was introduced to aid in achieving the goal of Universal Health Coverage (UHC). Under Ayushman Bharat, the concept of Health and Wellness Centres (HWCs) was initiated with the aim of providing comprehensive primary care by transforming existing SCs and PHCs (National Health Portal, 2019). Subsequently, a network of HWCs has been rapidly expanded across Indian under the Ayushman Bharat Yojana. By 17^th March 2022, 76,633 HWCs had been operationalised across India (MoHFW, 2022). The 13^th Common Review Mission (2019) reports that about 1.5 lakh Sub-Centres and PHCs would be transformed to HWCs by 2022 to provide comprehensive and quality primary health care in both urban and rural areas (MoHFW, 2019). A mid-level health officer (Community Health Officer; CHO) manages the HWCs and is supported by two multipurpose workers (one male and one female) and ASHAs. To strengthen HWCs, staff vacancies are being filled-in, and multi-skilling and capacity building efforts are underway. Infrastructure and logistics are being upgraded along with expansion in the range of medicines and diagnostics, adoption of Information Technology (IT) equipment and applications, telemedicine platforms (MoHFW, 2019). Community outreach and information-education-communication (IEC) efforts are being scaled-up through the HWCs with a focus on promotion of health and wellness (MoHFW, 2019).

Proportion that makes use of public sector services:

The percentage of households that use health care in the public sector has increased from 34% to 45% in 2005-2006 and 2015-2016 respectively (International Institute for Population Sciences (IIPS) and ICF, 2017).

References:

Directorate General of Health Services (2012). Indian Public Health Standards. Guidelines for Sub-District/Sub-Divisional Hospitals. Ministry of Health and Family Welfare. Government of India. Available from: http://clinicalestablishments.gov.in/WriteReadData/437.pdf

Government of India (n.d.). Seventh schedule., 1970(5). Retrieved from: https://www.mea.gov.in/Images/pdf1/S7.pdf

International Institute for Population Sciences (IIPS) and ICF (2017). NATIONAL FAMILY HEALTH SURVEY (NFHS-4) 2015-16 INDIA. Mumbai. http://rchiips.org/nfhs/NFHS-4Reports/India.pdf

Ministry of Health and Family Welfare (2013). National Urban Health Mission. Government of India. Available from: https://nhm.gov.in/images/pdf/NUHM/Implementation_Framework_NUHM.pdf

Ministry of Health and Family Welfare (2019). 13th Common Review Mission. National Health Mission, Goverment of India. Available from: https://nhsrcindia.org/sites/default/files/2021-04/13th_common_review_mission-Report_2019_Revise.pdf

Ministry of Health and Family Welfare (2022). Ayushman Bharat-Health and Wellness Centres. Ministry of Health and Family Welfare, Government of India. Retrieved from: http://ab-hwc.nhp.gov.in/

Ministry of Health and Family Welfare (n.d.-a). National Rural Health Mission-Meeting people’s health needs in rural areas: framework for implementation 2005-2012. Government of India. Available from: https://nhm.gov.in/WriteReadData/l892s/nrhm-framework-latest.pdf

Ministry of Health and Family Welfare (n.d.-b). Rural Health Statistics 2019-2020. Statistics Division, Ministry of Health and Family Welfare. Government of India.

Ministry of Health and Family Welfare. (2012). Indian Public Health Standards. Available from https://nhm.gov.in/index1.php?lang=1&level=2&sublinkid=971&lid=154

National Health Portal (2019). Ayushman Bharat Yojana. Government of India. Available from: https://www.nhp.gov.in/ayushman-bharat-yojana_pg

National Health Systems Resource Centre (2019). Update on ASHA Programme: July 2019. Ministry of Health and Family Welfare. Available from: https://nhsrcindia.org/sites/default/files/2021-06/ASHA%20Update%20July%202019.pdf

About 74% of India’s total health care expenditure is incurred in the private health sector (India Brand Equity Foundation, 2019), a large proportion of this accounts for inpatient care (including advanced diagnostics, major surgical, and critical care services). The formal private providers in India are mostly concentrated in urban areas (metropolitan and bigger cities) and focus primarily on allopathic care (about three-fourths), and on secondary and tertiary care. They operate in both multi- and mono-specialty set-ups (Chokshi et al., 2016).

The formal private health sector in India includes private clinics (usually led by a single doctor or a doctor-couple), poly-clinics nursing homes and private hospitals as well as medical colleges. They range from doctor-owned set ups to those with doctor-manager partnerships to corporate facilities, and from not-for-profit to for-profit national and international ventures. In rural areas the private health sector is relatively unregulated and comprises mostly of non-formal providers and local practitioners.

While the rate of growth of the private healthcare sector is not uniform across India (Hooda, 2015), the private health sector, in general, shows a very rapid growth due to increasing demand (increasing purchasing power of citizens, epidemiological transition, emergence of medical tourism, increasing home health care needs), and supply (increasing number of trained personnel, health technology, policy liberalization leading to increasing foreign direct investment, etc.). The advent of telemedicine and innovative public-private partnership models hold further promises for the growth of the private healthcare industry in India. Simultaneously, there is policy level effort (e.g., the Clinical Establishment Act of 2010 (Ministry of Law and Justice, 2010)) to standardise the private health sector in India.

Proportion that makes use of private sector services:

As per the National Family Health Survey-4 (International Institute for Population Sciences (IIPS) and ICF, 2017), 51% of household were more likely to seek care from the private sector in 2015-2016.

References:

Chokshi, M., Patil, B., Khanna, R., Neogi, S. B., Sharma, J., Paul, V. K., & Zodpey, S. (2016).  Health systems in India. Journal of Perinatology: Official Journal of the California Perinatal Association, 36(s3), S9–S12. https://doi.org/10.1038/jp.2016.184

Hooda, S.K., (2015). Private Sector in Healthcare Delivery Market in India: Structure, Growth and Implications. Institute for Studies in Industrial Development Institute for Studies in Industrial Development.

India Brand Equity Foundation. (2019). Healthcare Industry in India, Indian Healthcare Sector, Services. Available from https://www.ibef.org/industry/healthcare-india.aspx

International Institute for Population Sciences (IIPS) and ICF (2017). NATIONAL FAMILY HEALTH SURVEY (NFHS-4) 2015-16 INDIA. Mumbai. http://rchiips.org/nfhs/NFHS-4Reports/India.pdf

Ministry of Law and Justice. (2010). The Clinical Establishments (Registration and Regulation) Act. Government of India. Available from: http://clinicalestablishments.gov.in/WriteReadData/969.pdf

In rural areas, frontline workers i.e., the ASHAs (Accredited Social Health Activists) facilitate contact with the public health sector. These act as community-based mobilizers that receive performance-linked incentives for service access and utilisation by their catchment population (usually, a village of 1,000 population) (NHSRC, 2019). The Anganwadi Workers from the Women and Child Development Department of the Government of India serve as the other community-based village-level frontline workers that help with maternal child health nutrition and immunization services, and in community mobilization.

The Auxiliary Nurse Midwife (ANM) at the sub-centre serves as the first contact with the formal public health sector (MoHFW, n.d.-b). Even though referral linkage exists between the facilities at the different tiers, care seekers in India most commonly use ‘walk-in’ services. In-patient admissions happen through out-patient and emergency departments. Many health services in rural India are also accessed through the non-formal practitioners, whose services are unregulated, with concerns regarding the quality of care offered (unsafe injection practices, multi-pharmacy, steroid, and antibiotic abuse, etc.) (Gautam et al., 2014). Frequently, these local practitioners serve as the first point of contact for health care seekers and cover up for the unavailability of formal providers. They also refer patients to formal health facilities for care, but often with delay and complications.

In urban areas, for critical cases, people frequently choose to seek care in the private sector. The perception of better care quality, convenience, staff availability, and system responsiveness are some of the reasons for people preferring the private sector over the public health sector (Barik and Thorat, 2015). However, care in the private sector is costlier than the public sector. Drugs and services in the latter are usually subsidised.

Schemes like the Employee State Insurance Corporation, the Central Government of Health Services, Corporate Empanelment Schemes, and Ayushman Bharat serve as the other major routes of health access to public and private health care providers for individuals and families (Table 2.4).

The most recently (2018) launched an insurance scheme under Ayushman Bharat known as the Ayushman Bharat Pradhan Mantri Jan Arogya Yojana (PM-JAY), which is a government funded health insurance scheme offering socioeconomically disadvantaged families a benefit cover of Rs 5 lakh per year for hospitalizations (National Health Authority, 2022b). With PMJAY, several neurological diseases that require secondary and tertiary care are also covered such as meningitis, epilepsy and stroke, and care can be accessed in both public and private facilities (Paul, 2019). In addition, in September 2021, the Ayushman Bharat Digital Mission (ABDM) was introduced, with the aim of improving digital health infrastructure and bridging current gaps within the country (National Health Authority, 2022a). ABDM will be able to facilitate access of patients to their own health records, allow patients to share their health records with health care providers, provide the ability to access health services via tele-consultations etc. (National Health Authority, 2022a).

Table 2.4 Schemes related to health care

References:

Barik, D., & Thorat, A. (2015). Issues of unequal access to public health in India. Frontiers in public health, 3, 245.

Gautham, M., Shyamprasad, K. M., Singh, R., Zachariah, A., Singh, R., & Bloom, G. (2014). Informal rural healthcare providers in North and South India. Health policy and planning, 29(suppl_1), i20-i29. https://doi.org/10.1093/heapol/czt050

Ministry of Health and Family Welfare. (n.d.-b). Rural Health Statistics 2019-2020. Statistics Division, Ministry of Health and Family Welfare. Government of India.

Ministry of Health and Family Welfare. (2020a). Central Government Health Scheme.

National Health Authority (2022a). Ayushman Bharat-Digital Mission. Government of India. Available from: https://abdm.gov.in/

National Health Authority (2022b). Ayushman Bharat-Pradhan Mantri Jan Arogya. Government of India.

National Health Portal (2019). Ayushman Bharat Yojana. Government of India. Available from: https://www.nhp.gov.in/ayushman-bharat-yojana_pg

National Health Systems Resource Centre (2019). Update on ASHA Programme: July 2019. Ministry of Health and Family Welfare. Available from: https://nhsrcindia.org/sites/default/files/2021-06/ASHA%20Update%20July%202019.pdf

National Portal of India (2020). Employee State Insurance Scheme. Government of India. Available from: https://www.india.gov.in/spotlight/employees-state-insurance-scheme#tab=tab-1

Paul, V. (2019). Ayushman Bharat Pradhan Mantri Jan Arogya Yojana (AB PMJAY): Hope for Millions and Exciting New Prospects for Neuro-Healthcare. Neurology India, 67(5), 1186. https://doi.org/10.4103/0028-3886.271284

The public health system in India accommodates direct walk-ins and referred patients at facilities across all levels of care (primary, secondary, and tertiary level facilities). Nevertheless, there is a form of gatekeeping in place, in which public primary care facilities provide referrals to secondary/tertiary facilities. However, in rural areas, due to delays in access, poor availability and quality of services, individuals who can afford private care choose to directly seek secondary/tertiary care services privately after their initial primary care consultations. Whereas, in urban areas, the public is likely to directly access secondary/tertiary facilities because of higher demand for care by specialists and the perception that quality of care is better at higher level facilities (Faizi et el., 2016; Mohan and Kumar, 2019; Rural Health Information Hub, 2021).

In the public health care system in India, a referral chain arrangement exists where community-based providers and facilities provide referral advice for care seeking at the next or ever higher level on a case-to-case basis. The referral linkages are bidirectional and rather more evident for maternal health services, where first referral units have been clearly identified. Although health policies and program designs call for referral-based rationing at different tiers of the system, in practice, care can be directly sought at any health kiosk without referral from lower-level health care provider. For example, in urban areas where tertiary care settings are overburdened, the public prefers these facilities as there is a higher demand for care by specialists than by primary care physicians. It is a prevalent perception that quality of care at higher-level facilities is better than the one available at lower levels. On the other hand, in rural communities, it has been noted that care-seekers usually divert to the private providers after an initial consultation with the primary level facilities, as referral care is perceived as costly and inconvenient (Faizi et el., 2016; Mohan and Kumar, 2019; Rural Health Information Hub, 2021).

References:

Faizi, N., Khalique, N., Ahmad, A., & Shah, M. S. (2016). The dire need for primary care specialization in India: Concerns and challenges. Journal of family medicine and primary care, 5(2), 228–233. https://doi.org/10.4103/2249-4863.192382

Mohan, P., & Kumar, R. (2019). Strengthening primary care in rural India: Lessons from Indian and global evidence and experience. Journal of family medicine and primary care, 8(7), 2169–2172. https://doi.org/10.4103/jfmpc.jfmpc_426_19

Rural Health Information Hub. (2021). Healthcare access in rural communities. RHI Hub. Available from: https://www.ruralhealthinfo.org/topics/healthcare-access

Access to health services remains varied (Baru et al., 2010). Several equity indicators, such as gender, literacy, geographic location (e.g., rural versus urban), and socioeconomic status, influence this (Baru et al., 2010). These operate through complex inter-woven pathways of awareness (e.g., sensitivity to symptoms; services needed), availability (e.g., service provisioning at point-of-care; distance), affordability (e.g., public versus private versus unregulated/informal care providers; generalist versus specialist care), and acceptability (e.g., basket of choices offered, quality of care, provider profile). It has been observed that access is also determined by the profile of the health condition (Kasthuri, 2018). Those with minor ailments, for example, are likely to use care since this is available at the primary level at low cost without the need for specialist opinion and advanced diagnostics (Barik and Thorat, 2015).

Access to care is poor in the empowered action group states (states in central and north-central belt of India that have traditionally had poor health and development indicators) (Kumar and Singh, 2016). Access to care services is also challenging for the urban poor residing in slums and urban settlements (Gupta and Mondal, 2015).

With respect to access to particular health care services, maternal health care service delivery has been strengthened for pregnancy and childbirth related care; however, access to postpartum services and follow up, and care services for sick new-borns (especially institutionalised care) is patchy (Paul et al., 2011). Whereas geriatric care, including home-based care and institutional facilities for adults, is limited across the country, sparing the metropolitan cities (ARDSI, 2010).

The Government of India (GOI) is committed towards addressing these challenges and achieving the goal of Universal Health Coverage (UHC) for its population, especially for the poorest, through Ayushman Bharat (Ayushman Bharat-HWCs and Ayushman Bharat-PMJAY). The Government has also made efforts to cap the cost of items (such as essential scheduled drugs, certain medical devices, consumables etc.) and regulate establishments (the Clinical Establishment Act of 2010) to secure affordability and quality in the private health sector (Ministry of Law and Justice, 2010; National Pharmaceutical Pricing Authority, 2013). However, these have coincided with failure of the private health sector and single-doctor facilities to thrive and sustain. Since most of the urban care provision is delivered by the private sector and the per capita annual public budget commitment to health (and as proportion of the national GDP) (NHSRC, 2021) by India continues to be amongst the lowest in the world, the health sector is headed for complex evolution.

References:

Alzheimer’s and Related Disorders Society of India (ARDSI). (2010). THE DEMENTIA INDIA REPORT  2010: Prevalence, impact, cost and services for dementia. New Delhi. Available from https://ardsi.org/pdf/annual%20report.pdf

Barik, D., & Thorat, A. (2015). Issues of unequal access to public health in India. Frontiers in public health, 3, 245.

Baru, R., Acharya, A., Acharya, S., Kumar, A. S., & Nagaraj, K. (2010). Inequities in access to health services in India: caste, class, and region. Economic and political Weekly, 49-58.

Gupta, I., and Mondal, S. (2015). Urban health in India: who is responsible? The International Journal of Health Planning and Management, 30(3), 192–203. https://doi.org/10.1002/hpm.2236

Kasthuri, A. (2018). Challenges to Healthcare in India – The Five A’s. Indian Journal of Community Medicine: Official Publication of Indian Association of Preventive & Social Medicine, 43(3), 141–143. Available from: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6166510/

Kumar, V., & Singh, P. (2016). Access to healthcare among the Empowered Action Group (EAG) states of India: Current status and impeding factors. The National medical journal of India, 29(5), 267.

Ministry of Law and Justice. (2010). The Clinical Establishments (Registration and Regulation) Act. Government of India. Available from: http://clinicalestablishments.gov.in/WriteReadData/969.pdf

National Health System Resource Centre (NHSRC). (2021). National Health Accounts-Estimates for India: 2017-2018. Ministry of Health and Family Welfare, Government of India. Available from: https://nhsrcindia.org/sites/default/files/2021-11/National%20Health%20Accounts-%202017-18.pdf

National Pharmaceutical Pricing Authority. (2013). List of Notified Prices. Department of Pharmaceuticals, Ministry of Chemical and Fertilizers. Government of India. Available from: https://www.nppaindia.nic.in/en/utilities/list-of-notified-prices/dpco-2013/

Paul, V. K., Sachdev, H. S., Mavalankar, D., Ramachandran, P., Sankar, M. J., Bhandari, N., … & Kirkwood, B. (2011). Reproductive health, and child health and nutrition in India: meeting the challenge. The Lancet, 377(9762), 332–349. https://doi.org/10.1016/S0140-6736(10)61492-4

Household health expenditures comprised 54.3% (including insurance contributions) of THE in 2017-2018 (NHSRC, 2021). Out-of-pocket (OOP) expenditures contributed to 48.8% of THE in 2017-2018 (NHSRC, 2021). Government health expenditures comprised 40.8% of THE in the same period (NHSRC, 2021).

Of the Current Health Expenditure, Union Government and State Government’s share is Rs.60,442 crores (12%) and Rs.90872 crores (18.1%) respectively in 2017-2018 (NHSRC, 2021). Local bodies’ share is Rs.4965 crores (1%), Households share (including insurance contributions) about Rs.3,008,225 crores (61.4%, OOPE being 55.1%) (NHSRC, 2021). Enterprises contribution (including insurance contributions) is Rs.26,335 crores (5.3%), NGOs is Rs.7,936 crores (1.6), and funding from external donors contributes to about Rs.2955 crores (0.6%) in 2017-2018 (NHSRC, 2021).

References:

National Health System Resource Centre (NHSRC). (2021). National Health Accounts-Estimates for India: 2017-2018. Ministry of Health and Family Welfare, Government of India. Available from: https://nhsrcindia.org/sites/default/files/2021-11/National%20Health%20Accounts-%202017-18.pdf

Less than 20% of the population was covered by any form of health insurance in 2014, based on the National Sample Survey (71st round) of household data (National Sample Survey Office (NSSO), 2015). An estimate of the National Health Profile (Central Bureau of Health Intelligence (CBHI), 2019), states that about 48 crore individuals were covered by any health insurance in 2017-2018, which is about 37.2% of the population. A more recent National Family Health Survey (NFHS-5) 2019-2021, found that 41% of households with any usual member was covered under a health insurance/financing scheme. In principle, all citizens are eligible to receive health services in tax-financed public facilities (Gupta, 2020). In practice, there are major supply side constraints that limit access to public facilities, resulting in high out-of-pocket expenditures at private facilities by households (Gupta, 2020).

References:

Central Bureau of Health Intelligence (CBHI). (2019). National Health Profile. Ministry of Health & Family Welfare, Government of India. Available from http://www.cbhidghs.nic.in/showfile.php?lid=1147

Gupta, I. (2020). India | Commonwealth Fund. Commonwealthfund.org. Retrieved from: https://www.commonwealthfund.org/international-health-policy-center/countries/india.

National Sample Survey Office (NSSO). (2015). Key Indicators of Social Consumption in India Health -NSS 71^st Round. Ministry of Statistics and Programme Implementation, Government of India. Available from https://www.thehinducentre.com/resources/article7378862.ece

India has a semi-federal governance structure. Public responsibilities are shared either by the Union or the States or both. Health is a State subject in India. Thus, Union and State strategies for health might align, differ, or co-adapt. Government spending on health is mainly based on budget allocations as part of the annually announced Union (Central) budget as well as state budget allocations and central transfers to states.

A scheme launched by the Government of India in 2018 is the Ayushman Bharat-Pradhan Mantri Jan Arogya Yojana (PMJAY), which is part of the Ayushman Bharat programme. This scheme is designed to have a defined benefit cover of Rs. 5 lakh per family per year (National Health Portal, 2019). Benefits of the scheme are portable across the country and a beneficiary covered under the scheme will be allowed to take cashless benefits from any public/private impanelled hospitals across the country (National Health Portal, 2019). It is an entitlement-based scheme with entitlement decided based on deprivation criteria in the Socio-Economic Caste Census database (National Health Portal, 2019).

The Ayushman Bharat flagship programme brings together initiatives of the National Health Insurance (PMJAY) and the Health and Wellness Centres (HWCs) (National Health Portal, 2019). The programme is based on tax-based financing and thus, critically depends on the Centre’s allocations to the programme.

References:

National Health Portal. (2019). Ayushman Bharat Yojana. Government of India. Available from: https://www.nhp.gov.in/ayushman-bharat-yojana_pg

The federal structure of the country and the recognition of health as a state subject implies that both centre and the states decide how much should be spent on health. States depend on central funds for many of the health programmes. While most of the taxation powers are with the central government (for example income tax), the bulk of spending on health is done by the states. Thus, transfer of resources from the central government to the states is a critical part of the overall financing arrangement, and the Finance Commission – set up every 5 years to indicate principles of allocation of divisible taxes as well as the share between central government and the states – is a key entity that recommends how much additional funds should be allocated to the states and how these should be distributed across states. However, recommendations of the Finance Commission are not binding for the central government (Finance Commission India, n.d.; MoHFW, 2017).

References:

Finance Commission India. (n.d.). Finance Commission. Government of India. Available from:  https://fincomindia.nic.in/

Ministry of Health and Family Welfare. (2017). National Health Policy. Government of India. Available from: https://www.nhp.gov.in/nhpfiles/national_health_policy_2017.pdf

The central government presents its budget estimates for each of the sectors, including the health sector, in its Annual Financial Statement (traditionally in February) – also called the Union Budget of India. The budget is prepared mainly in the Ministry of Finance after detailed consultations with major stakeholders, including other ministries. Thus, the Ministry of Health and Family Welfare’s inputs are critical. However, the National Institute for Transforming India (NITI) Aayog (the policy think tank of the government, which provides technical advice to both central and state governments), which replaced the former Planning Commission, also plays an important role especially in terms of new initiatives and can influence the budget, including the health budget (Government of India, 2018a).

References:

Government of India. (2018a). NITI Aayog holds Dialogue on Health System for New India. Available from: http://pib.nic.in/newsite/PrintRelease.aspx?relid=186039

The previous description clearly indicates that priority setting itself is a complex exercise and depends on the central government, the states, and also on the NITI Aayog. There are programmes that are centrally sponsored, but responsibility for implementation lies with the states. The states also set their priorities and implement several programmes where the Centre does not play any role. However, since the states depend on the central budget allocation for much of their funding, ultimately, the total amount of funding for the health sector –which comes from the states’ own revenues and central transfers – does affect how the priorities get implemented.

As mentioned above, the health budgets are a total of central budget and state budgets. Most of the programmes visualised in the central budget for health get to be implemented by the states/Union Territories (UTs). A good example is the National Health Mission, which has several components: the national rural health mission, the national urban health mission, a communicable diseases programme, a non-communicable disease programme, and infrastructure maintenance are the major ones. States have the flexibility to plan and implement state specific action plans and need to draw up their respective Project Implementation Plans (PIP) (MoHFW, 2020), which spell out the key strategies, activities undertaken, budgetary requirements and key health outputs and outcomes. The funds flow from the Central Government to the states/UTs, as described above.

Previously, funds for various schemes initiated by the central government were directly transferred to the implementing agencies in states, bypassing treasuries of state governments. Since March 2014, funds are being released first to the treasuries of sub-national (State) governments, which are then responsible for transferring the funds to the implementing agencies (Choudhury, and Mohanty, 2018).

References:

Choudhury, M., & Mohanty, R. K. (2018). Utilisation, Fund Flows and Public Financial Management under the National Health Mission. New Delhi. Available from https://www.nipfp.org.in/media/medialibrary/2018/05/WP_2018_227.pdf

Ministry of Health and Family Welfare (MoHFW). (2020). Programme Implementation Plan. National Health Mission. Available from http://pip.nhm.gov.in/.

The Ministry of Health and Family Welfare (MoHFW) oversees two departments: the Department of Health and Family Welfare and the Department of Health Research. When the Union Budget has been presented to Parliament, the Standing Committees of the Parliament scrutinise each Ministry’s Demand for Grants in detail. This document lays out the various priorities of the government in the form of estimated expenditures under various line items or programme areas. The MoHFW also presents its Demand for Grants for scrutiny to the Standing Committee. For example, the observations and recommendations of the Committee when scrutinising the 2018-19 Demands for Grants was that the government health expenditure (at 1.35% of GDP) (NHSRC, 2021) may not meet the goals of the National Health Policy that envisages a health expenditure of 2.5% of GDP by central and state governments by 2025. The feedback also mentioned that attention is needed to be paid to the wide gap between demands of the Department and allocation made as well as delays in transfer of funds and scaling down on various health initiatives and programmes due to the reduced budgetary allocation (Kala, Mann, & Tiwari, 2019).

When the Demands for Grants are passed, they are then consolidated into an Appropriation Bill and then subsequently the Finance bill is also taken up for consolidation. A similar process takes place at the State/UT level, where state legislative assemblies and state departments of health are responsible for preparing the estimates for different budget heads under the departments’ Demand for Grants.

References:

Kala, M., Mann, G., & Tiwari, S. (2019). OVERSEEING PUBLIC FUNDS.

National Health System Resource Centre (NHSRC). (2021). National Health Accounts-Estimates for India: 2017-2018. Ministry of Health and Family Welfare, Government of India. Available from: https://nhsrcindia.org/sites/default/files/2021-11/National%20Health%20Accounts-%202017-18.pdf

According to the National Health Profile (CBHI, 2019), about 37.2% of the population was covered by any health insurance in 2017-18, while 62.8% of the population remain uninsured. Of those insured, 78% were covered by public insurance and the rest by private insurance  (CBHI, 2019).

References:

Central Bureau of Health Intelligence (CBHI). (2019). National Health Profile. Ministry of Health & Family Welfare, Government of India. Available from http://www.cbhidghs.nic.in/showfile.php?lid=1147

The Insurance Regulatory and Development Authority of India (IRDA) has the duty to protect the interests of the policyholders to regulate, promote, and ensure orderly growth of the insurance business and re-insurance business in India (Insurance Regulatory and Development Authority of India (IRDA), 2016). For the health insurance sector, IRDA has attempted to improve service standards and has issued guidelines standardising 42 most used definitions/terms/conditions in health insurance policies. The guidelines also include definitions of twenty-two common critical illnesses covered under various health insurance policies in India (IRDA, 2016).

References:

Insurance Regulatory and Development Authority of India (IRDA). (2016). Guidelines on Standardization in Health Insurance.

A study indicates that overall the proportion of households with catastrophic health expenditure “increased 1.47-fold between the NSS 1993–1994 and 2011–2012 expenditure surveys, and 2.24-fold between the NSS 1995–1996 and 2014 utilization surveys” (Pandey et al., 2018).

References:

Pandey, A., Ploubidis, G. B., Clarke, L., & Dandona, L. (2018). Trends in catastrophic health expenditure in India: 1993 to 2014. Bulletin of the World Health Organization, 96(1), 18–28.

Not applicable.

Exact figures of the human resources for health in India are not available. Estimates suggest there are 7.35 medical doctors (World Health Organization (WHO), 2020) and 17.48 nursing and midwifery (WHO,2020), for every 10,000 population in India. The health workforce is more concentrated in the private sector and urban areas (KPMG, 2017).

In 2015, it was reported that 3,812 neurologists were associated with the professional associations for neurologists in India, which is about approximately 70% of the total number of neurologists in the country (Ganapathy, 2015). We modelled this information to estimate that India could be having just about 4.3 neurologists for every 100,000 populations, and the distribution being heavily concentrated in the main cities. We do not have an estimate on the number of geriatricians in the country, but there are likely to be fewer than neurologists. There is a skewed distribution of health personnel across India and the local personnel-population ratio could be significantly different from the national averages (Karan et al., 2019).

There is not much emphasis on geriatrics in the curriculum for undergraduate medicine or nursing education. The National Medical Commission (erstwhile Medical Council of India; the regulatory authority for medical education in India) does not mandate the available theory classes offered in some of the universities. In the 11th Five-year plan under the NPHCE, it was proposed to start training for postgraduate’s medical students in geriatric medicine in seven regional institutes along with in-service training of health professionals from district hospitals (including 100 doctors participating in the training). The scheme has been revised and includes more institutes; however, only one institute has started with the implementation. There are only four medical schools that provide postgraduate geriatric programmes. With respect to nurses, The Indian Nursing Council (the national regulatory body for nurses in India) has developed a one year postgraduate diploma course in geriatrics for nurses (Indian Nursing Council, n.d).

References:

Ganapathy, K. (2015). Distribution of neurologists and neurosurgeons in India and its relevance to the adoption of telemedicine. Neurology India, 63(2), 142. https://doi.org/10.4103/0028-3886.156274

Indian Nursing Council (n.d). PB Diploma in Gerontological Nursing. Available from: https://indiannursingcouncil.org/uploads/pdf/15993067779181124165f537c1986349.pdf

Karan, A., Negandhi, H., Nair, R., Sharma, A., Tiwari, R., & Zodpey, S. (2019). Size, composition, and distribution of human resource for health in India: new estimates using National Sample Survey and Registry data. BMJ Open, 9(4), e025979. https://doi.org/10.1136/bmjopen-2018-025979

KPMG (2017). Human resources and skill requirements in the health sector. Ministry of Skill Development And Entrepreneurship and National Skill Development Corporation. Available from: https://skillsip.nsdcindia.org/sites/default/files/kps-document/Healthcare.pdf

World Health Organization (2020). Global Health Workforce Statistics database. World Health Organization. Available from: https://www.who.int/data/gho/data/themes/topics/health-workforce

The attrition rate in the health sector in India is assumed to be around 25%; however, the rates are higher for Auxiliary Nurse Midwife (ANMs) and nurses (about 40%) (KPMG, 2017). Even as the public health system in India faces considerable challenges due to staffing shortage, the patterns of health staff vacancies in India has changed significantly over the past few years. Especially, the ratio for doctors and nursing personnel has also shown upward trends. The doctor-to-nurse ratio is also likely to improve with more nurses joining the workforce. The network of Accredited Social Health Activists (ASHAs) (ASHAs are community health workers appointed under the National Rural Health Mission, who act as a point of contact between the public health services and the community) has expanded to cover all rural parts of the country. Simultaneously, the size of Anganwadi Workers and ANMs has also increased (Anganwadi is a government-sponsored child-care and mother-care development programmes in India at the village level). The number of available pharmacists, support staff, and specialised cadres (e.g., psychologists for child development screening, audiologists and optometrists), however, remains low. There is an effort to increase the number of public health/epidemiology personnel, anaesthetists and sonologists in the system.

There are areas within the country where the public health system is almost the sole provider of health services (e.g., Himachal Pradesh) while in certain areas, care is mostly delivered through informal private providers (e.g., rural Haryana and Bihar). It is expected that the healthcare sector would require about a 100% growth in terms of workforce by 2022 in comparison to 2013, so that it can meet the market demand (KPMG, 2017) .The demand will be especially high for nurses and midwifery cadre. In particular, as the demand for quality tertiary and quaternary care services continues to increase, there is a substantial need for specialised human resources such as nurses, doctors, and allied health professionals (KPMG, 2017). However, outreach services in urban areas are affected with issues of unavailability, as well as poor optimisation of staff. Challenges in terms of selection, deployment, employability, and remuneration have been highlighted. The majority of the health care staff across the country is contractual, especially, the allied personnel (allied health professionals are associates/technicians/technologists who support a number of services such as diagnosis, treatment, prevention, rehabilitation etc. (Government of India, 2018b). Contractual agreements and performance linked payments with lack of clarity on career track progression are understood to contribute to worker attrition and migration. Challenges in selection, deployment, employability, and remuneration have also been highlighted (Rajbangshi et al., 2017).

References:

Government of India. (2018b). THE ALLIED AND HEALTHCARE PROFESSIONS BILL, 2018. Available from http://164.100.47.5/committee_web/BillFile/Bill/14/113/LX%20of%202018_2019_2_14.pdf

KPMG (2017). Human resources and skill requirements in the health sector. Ministry of Skill Development and Entrepreneurship and National Skill Development Corporation. Available from: https://skillsip.nsdcindia.org/sites/default/files/kps-document/Healthcare.pdf

Rajbangshi, P. R., Nambiar, D., Choudhury, N., & Rao, K. D. (2017). Rural recruitment and retention of health workers across cadres and types of contract in north-east India: A qualitative study. WHO South-East Asia Journal of Public Health, 6(2), 51–59. Available from: https://doi.org/10.4103/2224-3151.213792

Migration of Indian nurses to other countries has long been documented, but recently, the trends have increased. Increasing international demand, desire for a more respectable and successful life, aggressive recruitment and increasing number of institutions providing training in line with international curriculum and placement support have contributed to this. Traditionally, migration  has been to nearby countries, especially to the Middle East because these countries are less expensive to immigrate to and have easier employment criteria in comparison to Western countries (Gill et al, 2011). However, the geographic expanse of migration has increased to Canada, the USA and the UK, Australia, and New Zealand (Garner, Conroy, & Bader, 2015). Although, due to changes in immigration policies there has been a decline in Indian nurses migrating to the USA and UK (World Health Organization (WHO), 2017). Within the country, there is a huge gap in the availability of nurses. The South trains more nurses (as they have significantly more nursing colleges) giving an impression of ‘surplus’ while the North faces a shortage of nurses and, hence, it serves as potentially attractive job market for the nurses trained in the South.

It is suggested that since the number of undergraduate places far outnumber those for post-graduates, young doctors leave the country for advanced training, fellowships, and job opportunities. There is a trend of returning to the country after training abroad; however, the drain is undercompensated and a large share of those returning settle in metropolitan cities. The urban centricity of the health workforce continues, especially in the private sector. Migration patterns among other health personnel in India have not been adequately studied.

References:

Garner, S. L., Conroy, S. F., & Bader, S. G. (2015). Nurse migration from India: A literature review. International Journal of Nursing Studies, 52(12), 1879–1890. https://doi.org/10.1016/j.ijnurstu.2015.07.003

Gill, R. (2011). Nursing shortage in India with special reference to international migration of nurses. Social Medicine, 6(1), 52-59. Available from: https://socialmedicine.info/index.php/socialmedicine/article/viewFile/517/1088

World Health Organization (2017). From Brain Drain To Brain Gain Migration Of Nursing And Midwifery Workforce In The State of Kerala. World Health Organization.

There is no organised, public service delivery system in India that specifically addresses long-term care needs. However, several governmental policies and programmes enshrine the principles and components of long-term care, outlining services for chronic illness, injury, disability, and aging. Some examples include the National Mental Health Programme (2017), which supports long-term treatment and rehabilitation for persons with mental illness and the National Programme for Palliative Care (2012), which outlines care for persons with terminal cancer and AIDS.

There are also governmental initiatives targeted for the welfare of older individuals. The National Policy for Older Persons, formulated in 1999, affirms the government’s commitment to the well-being of older persons, and outlines the responsibilities of the family and the State in providing care for the elderly. The goals set out in the policy are operationalised through several programmes and schemes. For instance, the Integrated Programme for Older Persons (IPOP) initiated by the Ministry of Social Justice and Empowerment (MSJE) in 1992, and revised in 2018, offers financial support to governmental and non-governmental organisations providing basic services (food, shelter and healthcare) and institutional and non-institutional care for older persons, encouraging active and productive aging, and engaging in activities including research and advocacy (Ministry of Social Justice and Empowerment (MSJE), 2016; 2018a). In addition, the National Programme for Healthcare of the Elderly (Ministry of Health and Family Welfare (MoHFW), 2011), launched in 2010, aims to provide long-term, comprehensive, and dedicated care services to older people in ways that are affordable and accessible. This programme lists out strategies for preventive, promotive, curative and rehabilitative healthcare for older people, through its integration with the public healthcare systems at primary and secondary levels, as well as the setting up of specialized geriatric medical services at tertiary levels. More recently, the government has re-affirmed its commitment to senior citizens by announcing the implementation of an umbrella scheme known as Atal Vayo Abhyudaya Yojana (AVYAY) (MSJE, 2022). This scheme converges some existing schemes and programmes such as the Rashtriya Vayoshri Yojana (MSJE, 2022).

The limited long-term care services provided by the public health care system include nursing homes and other residential care facilities, day-care centres, and geriatric care in selected public hospitals (Ponnuswami & Rajasekaran, 2017; Sharma & Marwah, 2017). However, as in many developing countries, much of the long-term care mechanisms in India are institutionalised under the healthcare system, with its limited resources and functional capacities (UNESCAP, 2016). For instance, in psychiatric hospitals across the country, many “long-stay” patients are abandoned by families unable to care for them. With the absence of State-run long-term care facilities, hospitals play a custodial role for such patients (Daund et al., 2018). A survey of 43 mental hospitals across India, reported that over 36% of patients had been residing in the facilities for a year or longer, with a large number spending over 25 years in the hospital (Narasimhan, et al., 2019).

In the context of a limited number of long-term care facilities, and healthcare systems struggling to fill this gap, long-term care for older persons is mostly provided by the family. Sociocultural norms and traditions dictate family care for older persons, and the State enforces it by law (United Nations Department of Economic and Social Affairs, 2015). The Maintenance and Welfare of Parents and Senior Citizens Act, 2007 (Ministry of Law and Justice, 2007) defines the obligation of children and relatives in the maintenance of the older person, including the provision of food, clothing, residence, and medical attendance and treatment. According to this law, abandonment or failure to provide for a parent or older person is punishable by fine and imprisonment. Therefore, much of the long-term care in India is provided through unpaid care work by family members (UNESCAP, 2016).

A recent review suggested that a home-care model has several advantages to a hospital-based or nursing home-based model of care in India, as it is less expensive and more attractive to the service users, reducing inappropriate admissions, improving quality of life, and decreasing dependence on resources (Goel & Ramavat, 2018). However, the mere presence of home carers does not assure quality of care and must be supplemented with state-sponsored, integrated health care services to help older people and their carers, and ensure continuity of care (Bhattacharya & Chatterjee, 2017).

Care for older persons is primarily provided by the extended family. Institutional and state support are considered as alternatives for persons in exceptional circumstances such as when they are chronically/terminally ill, bed-bound, or without family support, and under the National Policy on Older Persons (NPOP). Public hospitals carry primary responsibility of care for such persons, with assistance from public charities and voluntary organisations (UNESCAP, 2016).

Traditionally, old age homes were meant for the poor and were mostly run by charities, but more recently, paid services have emerged to cater to older persons from the upper and middle class, who can afford them (Datta, 2017). There is also significant variability in the availability of services across the country due to inter-state differences in demographic characteristics, availability of eldercare infrastructure, and other contexts (Bhattacharya & Chatterjee, 2017).

The central (federal) government relies on the state governments to implement its policies and programmes for the welfare of older people. Programmes such as the National Programme for Health Care for the Elderly (NPHCE), while being novel and comprehensive, have been criticised for failing to consider regional disparities that could possibly impede implementation (Verma & Khanna, 2013). While most states have begun implementing the policies with enthusiasm, the measures adopted, and the standards of implementation are not uniform. Indeed, some states are yet to begin implementation due to financial and operational difficulties (United Nations Population Fund, 2017)

Moreover, UNESCAP (2016) lists other potential barriers to long-term care. Public and private hospitals are not equipped to provide long-term care. The private sector does not encourage patients with long standing illness or functional decline, especially in old age homes. The management tends to request the family/next of kin to withdraw from the service as they are ill-equipped and not trained to provide care for severe health conditions. The Indian health care system lacks financial mechanisms to support long-term care. Most of the hospices available are cancer-oriented which lack expertise to care for people with other illnesses.

References:

Bhattacharya, T. and Chatterjee, S. C. (2017). Exploring elder care in different settings in West Bengal: a psycho-social study of private homes, hospitals and long-term care facilities. International Journal of Psychological & Behavioural Sciences, 11(6), 1639-44

Datta A. (2017) Old Age Homes in India: Sharing the Burden of Elderly Care with the Family. In: Irudaya Rajan S., Balagopal G. (eds) Elderly Care in India. Springer, Singapore

Daund, M., Sonavane, S., Shrivastava, A., Desousa, A., & Kumawat, S. (2018). Mental Hospitals in India: Reforms for the future. Indian Journal of Psychiatry, 60(Suppl 2), S239.

Goel, A. & Ramavat, A. S. (2018). Absence of a formal long-term healthcare system for a rapidly ageing population is likely to create a crisis situation in the near future. Natl Med J India, 31, 1034.

Khurana, M. (2013). COVER STORY: Reaching the Unreached in Uttarakhand Donations to HelpAge India for Uttarakhand Flood Relief are eligible for 50% tax exemption under section 80G of Income Tax Act 1961. (Applicable in India only) (Vol. 12).

Kumar, P., Das, A., & Rautela, U. (2012). Mental and Physical Morbidity in Oldage Homes of Lucknow, India. DELHI PSYCHIATRY JOURNAL.

Ministry Of Health And Family Welfare (MHFW). (2011). OPERATIONAL GUIDELINES National Programme For Health Care Of The Elderly (NPHCE). Available from https://main.mohfw.gov.in/organisation/Departments-of-Health-and-Family-Welfare/national-programme-health-care-elderly-nphce

Ministry of Law and Justice. (2007). Maintenance and welfare of parents and senior citizens Act. Government of India.

Ministry of Social Justice & Empowerment (MSJE). (2018a). Integrated Programme for Senior Citizens. New Delhi. Government of India. Available from: http://socialjustice.nic.in/writereaddata/UploadFile/IPSrC%20English%20version.pdf

Ministry of Social Justice and Empowerment (MSJE). (2016). INTEGRATED PROGRAMME FOR OLDERPERSONS A Central Sector Scheme to improve the quality of life of the Older Persons. New Delhi . Available from: http://socialjustice.nic.in/writereaddata/UploadFile/IPOP%202016%20pdf%20document.pdf

Ministry of Social Justice and Empowerment (MSJE). (2022). Scheme for Welfare of Senior Citiizens. Press Information Bureau. Available from: https://pib.gov.in/PressReleaseIframePage.aspx?PRID=1806506

Ministry of Statistics and Programme Implementation (2016). Elderly in India – Profile and Programmes 2016 New Delhi Central Statistics Office, Government of India:26–9

Narasimhan, L., Mehta, SM., Ram, K., Gangadhar, B.N., Thirthalli, J., Th­anapal, S., Desai, N., Gajendragad, J., Yannawar, P., Goswami, M., Sharma, C., Ray, R., Talapatra, S., Chauhan, A., Bhatt, D., Neuville, E., Kumar, KVK., Parasuraman, S., Gopikumar, V. and NILMH Collaborators Group. (2019). National Strategy for Inclusive and Community Based Living for Persons with Mental Health Issues. Th­e Hans Foundation: New Delhi

National Mental Health Programme. (2017). The Mental Health Care Act. Available from: https://www.nhp.gov.in/national-mental-health-programme_pg

Ponnuswami, I., & Rajasekaran, R. (2017). Long-term care of older persons in India: Learning to deal with challenges. International Journal on Ageing in Developing Countries (Vol. 2). Available from: https://www.inia.org.mt/wp-content/uploads/2017/09/2.1-8-India-59-to-71-1-rev-RFB.pdf

Sharma, R. & Marwah, E. B. (2017). Rising demand for community based long-term care services for senior citizens in India. Indian Journal of Gerontology, 31 (4), 519-528.

UNESCAP. (2016). Long-term Care of Older Persons in India. Working Paper Ageing Long Term Care India v1-2.

United Nations Department of Economic and Social Affairs. (2015). GROWING NEED FOR LONG-TERM CARE. Available from: https://www.un.org/esa/socdev/ageing/documents/un-ageing_briefing-paper_Long-term-care.pdf

United Nations Population Fund. (2017). ‘Caring for Our Elders: Early Responses’ – India Ageing Report – 2017. UNFPA, New Delhi, India

Verma, R., & Khanna, P. (2013). National program of health-care for the elderly in India: A hope for healthy ageing. International Journal of Preventive Medicine, 4(10), 1103–1107. Available from: http://www.ncbi.nlm.nih.gov/pubmed/24319548

Older persons receive services from both the public and private sector. The National Sample Survey shows an increase in private and non-governmental services for older people in both hospital-based and other long-term health care (UNESCAP, 2016).

Table 3.1. The following table summarises the programmes and schemes offering care for older persons.

Source:  (Borah et al., 2016); (MoHFW, 2016a, 2016b; National Mental Health Programme, 2017; Vikaspedia, n.d.; MSJE, 2018b, 2022).

According to a 2009 directory compiled by HelpAge India, there are 1,279 old age homes in India. Of these, 543 provide services free of cost, while 237 are on a pay & stay basis. Another 161 homes have both free as well as pay & stay facilities (HelpAge India, 2016). Additionally, 214 old age homes accept medical/constant care cases and 133 homes are exclusively for older women (HelpAge India, 2016). Despite growing numbers of care homes for older people, these services are largely unregulated, making it difficult to estimate the number of homes or the number of older persons covered by formal services. It has been reported that 62.1% of the ageing population do not have access to long-term or palliative care (Agewell Research & Advocacy Centre, 2018). According to a review by the International Labor Organisation, no persons in India have legal entitlement to long-term care (Scheil-Adlung & Xenia, 2015).

Gaps are observed in terms of coverage, accessibility, and quality care in the provision of services under the public sector, which results in health care costs to be borne largely by private households (UNESCAP, 2017). National data on the proportion of the population that makes use of these services is not available.

References:

Agewell Research & Advocacy Centre. (2018). Independence in old age – with special focus on long-term & palliative care in india. New Dehli. Available from: https://www.agewellfoundation.org/images/Independence-in-Old-Age-Long-term-n-Palliative-care-in-India-June-2018.pdf

Borah, H., Shukla, P., Jain, K., Kimar, S., Prakash, C., & Gajrana, K (2016). Elderly in India 2016. Ministry of Statistics and Programme Implementation, Government of India.

HelpAge India (2016). Senior Citizens Guide. HelpAge India. Available from: https://www.helpageindia.org/wp-content/uploads/2017/06/senior-citizens-guide-2016.pdf

Ministry of Health and Family Welfare. (2016a). Department of Health and Family Welfare. Available from: https://main.mohfw.gov.in/sites/default/files/8072971981455275414.pdf

Ministry of Health and Family Welfare. (2016b). National Programme for Health Care of the Elderly.

Ministry of Social Justice & Empowerment. (2018b). THE MAINTENANCE AND WELFARE OF PARENTS AND SENIOR CITIZENS. New Delhi.

Ministry of Social Justice and Empowerment (2022). Scheme for Welfare of Senior Citiizens. Press Information Bureau. Available from: https://pib.gov.in/PressReleaseIframePage.aspx?PRID=1806506

National Mental Health Programme. (2017). The Mental Health Care Act. Available from: https://www.nhp.gov.in/national-mental-health-programme_pg

Scheil-Adlung, & Xenia. (2015). Long-term care protection for older persons : a review of coverage deficits in 46 countries. ILO Working Papers.

UNESCAP. (2016). Long-term Care of Older Persons in India. Available from: https://www.unescap.org/resources/long-term-care-older-persons-india

UNESCAP. (2017). Addressing the Challenges of Population Ageing in Asia and the Pacific. Available from: https://www.unescap.org/sites/default/files/publications/Addressing%20the%20Challenges%20of%20Population%20Ageing%20in%20Asia%20and%20the%20Pacific.pdf

Vikaspedia. (n.d.). National Social Assistance Programme. Ministry of Electronics and Information Technology. Government of India. Available from: https://vikaspedia.in/social-welfare/rural-poverty-alleviation-1/schemes/national-social-assistance-programme#:~:text=National%20Family%20Benefit%20Scheme%20(NFBS)%20%3A%20Rs.,the%20family%20eligible%20for%20assistance

The government implements the policies and programmes for the elderly in close collaboration with non-governmental and civil society organisations. The national policy envisages apex associations of older persons as a partner to the State. The All India Senior Citizens’ Confederation is one such organisation. Several NGOs are actively involved in planning as well as grassroots implementation to improve the quality of life of older persons. Some of them are also involved in providing long-term care components.

Table 3.2 shows private/ non-government organisations offering long-term care.

Source: (UNESCAP, 2016; Nikisa Dementia Village, n.d.; Nightingales Medical Trust, n.d.)

Note: Please refer to Part 7 for a larger list of available services.

Most of the listed organisations, except ARDSI, come at a considerable cost and prioritise post-acute care over long-term care. Long-term care in the private sector is less affordable, and older patients are generally discharged from hospitals early, often before adequate recovery. The public sector and the non-profit institutes appear not to be under so much pressure to discharge patients, and this incentivises older patients to access these facilities if they are able to afford it (UNESCAP, 2016). Inadequate housing conditions, lack of financial support, and lack of skilled caregivers are other problems associated with private care homes (Bhattacharya & Chatterjee, 2017).

There are several other organizations involved in providing hospice and palliative care services for cancer. A great number of such centres are concentrated in the state of Kerala. In 2008, Kerala was the first state in India to launch a palliative care policy (Khosla, Patel and Sharma, 2012). CanSupport in Kerala (Gupta, 2004), the Guwahati Pain and Palliative Care Society (GPPCS) in Assam, Karunashraya Bangalore Hospice Trust, and the Chandigarh Palliative Care service provide comprehensive, home-based cancer care (Khosla, Patel and Sharma, 2012). Similar models of care for older persons have not been reported.

References:

Bhattacharya, T. and Chatterjee, S. C. (2017). Exploring elder care in different settings in West Bengal: a psycho-social study of private homes, hospitals and long-term care facilities. International Journal of Psychological & Behavioural Sciences, 11(6), 1639-44. https://doi.org/10.5281/zenodo.1131896

Gupta, H. (2004). A journey from cancer to’CanSupport’. Indian Journal of Palliative Care, 10(1), 32.

Khosla, D., Patel, F. D., & Sharma, S. C. (2012). Palliative care in India: current progress and future needs. Indian Journal of Palliative Care, 18(3), 149–154.

Nightingales Medical Trust (n.d.). Home page. Available from: https://www.nightingaleseldercare.com/

Nikisa Dementia Villiage. (n.d). Home Page.  Available from: https://carefordementia.in/

UNESCAP. (2016). Long-term Care of Older Persons in India. Available from: https://www.unescap.org/resources/long-term-care-older-persons-india

The central government of India has launched a programme to support health related issues of older people under the National Programme for Health Care of the Elderly (NPHCE). The central government of India initiated the NPHCE scheme with 75% financing of total budget from the centre and 25% from the state government for district level activities (MOHFW, 2016b). The NPHCE provides free, specialised health care services exclusively for the aging population through state level providers (MOHFW, 2016b). The Ministry of Social Justice and Empowerment has initiated programs like the Integrated Programme for Older Persons (IPOP) scheme, which funds long-term care services for the elderly.

The Ministry of Health & Family Welfare of the Government of India also has a National Program for Palliative Care. This scheme is centrally sponsored with most states carrying 40% of the cost, and the North-Eastern states and Union Territories carrying 10% of the cost (MOHFW, 2019b). The beneficiaries of this scheme are people with terminal cancer, AIDS etc. (MOHFW, 2019b).

According to a review by the International Labour Organisation (ILO), India spends only about 0.1% of its GDP on long-term care (Scheil-Adlung & Xenia, 2015).

References:

Ministry of Health and Family Welfare. (2016b). National Programme for Health Care of the Elderly.

Ministry of Health and Family Welfare. (2019b). National Programme for Palliative care (NPPC): National Health Mission.

Scheil-Adlung, & Xenia. (2015). Long-term care protection for older persons : a review of coverage deficits in 46 countries. ILO Working Papers.

The allocation of funds is decided through the annual financial statement, commonly known as the Union Budget. The Union budget is announced in Parliament by the minister of finance. Both the finance bill and the appropriation bill are passed by the Lok Sabha before the annual announcement. In 2019–2020, the health budget was increased to support the requirements of the rural health mission and to initiate the Ayushman Bharat-Pradhan Mantri Jan Arogya Yojana health scheme (AB-PMJAY).

For other programmes, such as the National Programme for Palliative care, declared in 2012, a model Personal Independence Payment (PIP) framework with operational and financial guidelines has been designed. Based on a model PIP (Project Implementation Plans), the states/UTs may prepare their proposals related to palliative care and seek financial support from the National Health Mission. Palliative Care is part of the ‘Mission Flexipool’ under the National Health Mission (NHM) and no separate budget has been allocated for the implementation of the programme (MoHFW, 2019b). However, large gaps in the implementation of this programme have been reported with only about 2% of the proposed budget being sanctioned to a small number of states (Rajagopal, 2017).

References:

Ministry of Health and Family Welfare. (2019b). National Programme for Palliative care (NPPC): National Health Mission.

Rajagopal Vallath Nandini, M., Mathews Rajashree, L. K., & Watson, M. (2017). An Indian Primer of Palliative Care For medical students and doctors. Available from https://palliumindia.org/wp-content/uploads/2020/04/Chapter-1-Principles-of-Palliative-Care.pdf

It is a calculative process between the Ministry of Finance and the ministries to which the budget is allocated to decide on the funding. The budget process guides the respective ministries and departments to prepare revised budget estimates.

At the administrative level, the Ministry of Social Justice and Empowerment works in close collaboration with the state governments. The budgets are generally dispersed to the states through the respective national schemes, which are responsible of providing the health care services to older persons.

The Financial Management Groups (FMG) of the program management support units, working under the National Health Mission, help the state and district levels maintain accounts, release funds, and create expenditure reports along with utilisation certificates and conduct audits (Verma & Khanna, 2013). The funds are allocated to each state/union territory through the State Health Society (SHS), which enables the various activities of the programmes to be carried out (Verma & Khanna, 2013). The SHS further disperses the funds to CHCs, PHCs and Sub-centres via the District Health Society (DHS), covering the state and district levels (Verma & Khanna, 2013).

References:

Verma, R., & Khanna, P. (2013). National program of health-care for the elderly in India: A hope for healthy ageing. International Journal of Preventive Medicine, 4(10), 1103–1107. Available from: http://www.ncbi.nlm.nih.gov/pubmed/24319548

The funding is allocated to state federals and to the respective programmes and schemes initiated as part of the budgets.

The NPHCE and other elder care related schemes are covered by the country’s main health financing mechanisms. Ayushman Bharat (MoHFW, 2019a) proposes to transform the primary healthcare system in the country through the establishment of Health and Wellness Centres (HWCs). The HWCs are envisioned to provide primary healthcare services, with an addition of care for older persons and palliative healthcare services (Keshri and Gupta, 2019).

References:

Keshri, V., & Gupta, S. (2019). Ayushman bharat and road to universal health coverage in India. Journal of Mahatma Gandhi Institute of Medical Sciences, 24(2), 65. https://doi.org/10.4103/jmgims.jmgims_44_19

Ministry of Health and Family Welfare. (2019a). Ayushman Bharat Health and Wellness Centres: Accelerating towards health for all April 2018 – September 2019. Government of India. Available

To our knowledge, there are no specific private long-term care based insurance schemes in the country as of May 2020.

Information specific to out-of-pocket expenditures on long-term care services is not available.

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After enacting the Maintenance and Welfare of Parents and Senior Citizens Act, 2007, and launching the Integrated Programme for Older Persons in 2015, old-age homes have begun to emerge as one of the key institutions for long-term care in India. This has intensified the need to establish a licensing and regulatory authority for old-age homes and similar institutions. Moreover, minimum standards and mechanisms for quality assurance must be put in place.

At present, the National Health Policy 2017 (MoHFW, 2017) addresses long-term care in the following manner: India needs to develop its own cost-effective and culturally appropriate approach to addressing the health care needs of older persons. It emphasises a community-centred approach where care is provided in synergy with family support, with a greater role for formal caregivers at the community level, with good continuity of care at secondary and tertiary levels. A closely related concern is the growing need for palliative care for life threatening illness and where people approach the end of life. Palliative approaches include measures to relieve pain and suffering and provide support to the patient and the family (UNESCAP, 2016). The Ayushman Bharat scheme proposes setting up 1,50,000 health and wellness centres, which in addition to primary healthcare will also provide care of older persons, and palliative healthcare services (MoHFW, 2019a).

References:

Ministry of Health and Family Welfare. (2017). National Health Policy-2017. Ministry of Health and Family Welfare, Government of India. Available from: https://www.nhp.gov.in/nhpfiles/national_health_policy_2017.pdf

Ministry of Health and Family Welfare. (2019a). Ayushman Bharat Health and Wellness Centres: Accelerating towards health for all April 2018 – September 2019. Government of India. Available from: https://ab-hwc.nhp.gov.in/download/document/340b49eb2c0937e7b79ad8c1d6b975ad.pdf

UNESCAP. (2016). Long-term Care of Older Persons in India. Available from: https://www.unescap.org/resources/long-term-care-older-persons-india

An ILO report states that there are no formal long-term care workers in India. Instead, most care work is performed by informal and/or family carers (Scheil-Adlung & Xenia, 2015).

It has been reported that emphasising family responsibility in long-term care, as is the case in India, creates an unequal gender balance of unpaid family care workers. It disproportionately affects female family members who invest effort and time into unpaid care, and also lose income from employment in the process (International Labour Organization (ILO), 2015). There is no specific data available on formal and informal long-term care work in India.

References:

International Labour Organization. (2015). World Social Protection Report: Building economic recovery, inclusive development and social justice. ILO. Available from: https://www.ilo.org/wcmsp5/groups/public/—dgreports/—dcomm/documents/publication/wcms_245201.pdf

Scheil-Adlung, & Xenia. (2015). Long-term care protection for older persons : a review of coverage deficits in 46 countries. ILO Working Papers.

Under the NPHCE, post-graduate training for medical doctors in geriatric medicine has been initiated in a few centres and the Medical Council of India recognised the MD course in Palliative medicine in 2012. In addition, post-graduate diploma programmes in gerontology are available for graduates from disciplines other than health (UNESCAP, 2016). While there has been progress in geriatric and gerontology training in India, training for staff engaged in other roles in care homes, such as administration and service delivery still have significant gaps (Johnson et al., 2017).

Although, the long-term care workforce system is not well organised, a few training institutions as part of the government, private sector, and universities offer programmes and coordinate employment opportunities for formal caregivers. The Ministry of Social Justice provides financial support to institutions for training geriatric workers and formal caregivers through the National Institute of Social Defence (NISD). However, there is a need to standardise the content and evaluate the quality of these courses (UNESCAP, 2016). There are other various non-governmental and private sector operators, for example Nightingales medical trust, ARDSI etc., which offer training and other innovative long-term care programmes (Nightingales Medical Trust, 2014; ARDSI, 2015).

References:

Alzheimer’s and Related Disorders Society of India (ARDSI). (2015). Alzheimer’s and Related disorders Society of India (ARDSI).

Johnson, S., Madan, S., Vo, J., Pottkett, A. (2017). A qualitative analysis of the emergence of long term care (old age home) sector for seniors care in India: Urgent call for quality and care standards. Ageing International, 43(3), 356–365. https://doi.org/10.1007/s12126-017-9302-x

Nightingales Medical Trust. (2014). TRAININGS AT NIGHTINGALES MEDICAL TRUST.

UNESCAP. (2016). Long-term Care of Older Persons in India. Available from: https://www.unescap.org/resources/long-term-care-older-persons-india

As part of the Ministry of Health and Family Welfare programmes, NPOP, the NPHCE provided operational guidelines, which support the provision of accessible, affordable, comprehensive and high quality long-term care to the elder population (MoHFW, 2011). However, there are no regulatory mechanisms in place for long-term care workers. 

References:

Ministry Of Health And Family Welfare. (2011). Operational Guidelines: National Programme For Health Care Of The Elderly (NPHCE). Available from: https://main.mohfw.gov.in/organisation/Departments-of-Health-and-Family-Welfare/national-programme-health-care-elderly-nphce

India has seen a considerable rise in the number of formal caregivers (home-based attenders) as it has turned into a commercial venture (UNESCAP, 2016). However, patterns of vacancies and workforce turnover have not been documented. 

References:

UNESCAP. (2016). Long-term Care of Older Persons in India. Available from: https://www.unescap.org/resources/long-term-care-older-persons-india

It is observed that due to the challenges with agriculture, many informal workers migrate to urban areas, possibly taking up carer jobs due to their high demand and comfortable pay. It has also been remarked that with increasing migration of working-age children, the availability of informal carers for older persons has decreased (Scheil-Adlung & Xenia, 2015). However, more information on the patterns relating to the migrant workforce in long-term care work is not available.

References:

Scheil-Adlung, & Xenia. (2015). Long-term care protection for older persons : a review of coverage deficits in 46 countries. ILO Working Papers.

The LTC workforce is largely informal and unorganised, and information on their working conditions is not available.

An example of a volunteer-led model for long-term care has been tested in the state of Kerala. The Neighbourhood Network of Palliative Care (NNPC) project is a community-owned service model for long-term and palliative care (Kumar, 2007). Volunteers undergo a structured training program and operate in groups to identify and deliver interventions to people with chronic illness in their community (Kumar, 2007). These groups are supported by trained healthcare professionals (Kumar, 2007). Another example is that of ARDSI, where of the 18 chapters of across the country, only five centres are under the national administration while the rest rely mainly on volunteers to support the activities of the organisation.

However, most formal long-term care services are often clinician-centred, and the number of volunteers involved in long-term care is negligible. Most volunteers are former family caregivers who try to help with their expertise and experience from being carers. It has been observed that volunteers are more interested in training carers (informal or formal) than in directly supporting persons with care needs. 

References:

Kumar S. K. (2007). Kerala, India: a regional community-based palliative care model. Journal of pain and symptom management, 33(5), 623–627. https://doi.org/10.1016/j.jpainsymman.2007.02.005

The Ministry of Social Justice and Empowerment (MSJE) is the Nodal Ministry for welfare of senior citizens in India (Ministry of Social Justice and Empowerment (MSJE), 2022b, pp.14). Both the Ministry of Health and Family Welfare (MoHFW) and the MSJE have a number of programmes that are relevant to and applicable to persons with dementia. Few programmes are summarised in Table 4.1.

Table 4.1. Overview of national programmes

Source: MoHFW (2011; 2017a; 2017b; 2019; 2022); (MSJE, 2022a)

References:

Ministry Of Health and Family Welfare. (2011). OPERATIONAL GUIDELINES National Programme For Health Care Of The Elderly (NPHCE). Available from: https://main.mohfw.gov.in/organisation/Departments-of-Health-and-Family-Welfare/national-programme-health-care-elderly-nphce

Ministry of Health and Family Welfare. (2017a). Directorate General of Health Services: National Mental Health Programme.

Ministry of Health and Family Welfare. (2017b). National Programme for Prevention and Control of Cancer, Diabetes, Cardiovascular diseases, and Stroke (NPCDCS).

Ministry of Health and Family Welfare. (2019). National Programme for Palliative care (NPPC): National Health Mission.

Ministry of Health and Family Welfare. (2022). Ayushman Bharat-Health and Wellness Centres. Ministry of Health and Family Welfare, Government of India.

Ministry of Social Justice and Empowerment (2022a). Atal Vayo Abhyuday Yojana. Available from: https://grants-msje.gov.in/display-avyay

Ministry of Social Justice and Empowerment (2022b). Scheme for Welfare of Senior Citizens. Press Information Bureau. Available from: https://pib.gov.in/PressReleaseIframePage.aspx?PRID=1806506

The Ministry of Social Justice and Empowerment and the Ministry of Health and Family Welfare and are primarily responsible for dementia.

There are a number of programmes within the branches of social welfare, ageing, mental health and non-communicable disease management that are relevant for persons with dementia.

There is no dementia specific representative within the national government.

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

Not applicable.

Not applicable.

Not applicable.

Not applicable.

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

Please, refer to part 2 on health financing.

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 are existing programmes and policies under the MoHFW and MSJE that are relevant for persons with dementia and also have scope for inclusion of dementia. These are summarised in Part 3.

Not applicable.

A dementia specific initiative has been operating in Kerala since 2014 (a state in South India). The Department of Social Welfare, Government of Kerala, and the Kerala State Social Security Mission (KSSM) with ARDSI as its knowledge partner, have been jointly implementing the Kerala State Initiative on Dementia (KSID).

This initiative has the following mandates (Social Justice Department and ARDSI, 2014):

• Creating comprehensive dementia awareness in the community (information, education and communication materials and website content prepared/developed and disseminated by ARDSI) (Social Justice Department and ARDSI, 2014),
• Equipping social and health care personnel with the skills required to provide dementia care (ARDSI currently provides training to the personnel on dementia Care) (Social Justice Department and ARDSI, 2014),
• Establishing memory clinics in medical colleges for early diagnosis and intervention (ARDSI has published memory clinic guidelines) (Social Justice Department and ARDSI, 2014),
• Establishing Model Dementia Day Care and Full-time Care Centres in all districts (one each functional at Cochin and Trissur districts of Kerala) (Social Justice Department and ARDSI, 2014),
• Setting up telephone helpline services for dementia information and support (ARDSI has set up a Dementia National Help Line at Cochin) (Social Justice Department and ARDSI, 2014)
• Developing protocols for the diagnosis, treatment, and care of the dementia (ARDSI has developed standard operating procedures for Day care centres and full-time Dementia care centres) (Social Justice Department and ARDSI, 2014).

References:

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

Not applicable.

There is no national policy or plan for dementia in India. As a result, this section will include several policies and programmes that are relevant to persons with dementia.

Not applicable.

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India is a signatory to the Sustainable Development Goals (SDGs). The 3^rd goal focuses on improving health and wellbeing of people of all ages (Sustainable Development Solutions Network, n.d.). As part of the health goal, target 3.4 asks countries by 2030 to reduce premature mortality from NCDs by one third “through prevention, treatment, and promotion of mental health and well-being” (Sustainable Development Solutions Network, n.d.). However, in India there is no national dementia policy and, as a result, these aspects of the SDGs are not reflected in a dementia specific plan. Although, programmes/acts such as the National Programme for Control of Cancer, Diabetes, Cardiovascular Diseases, Diabetes and Stroke (NPCDCS) (addressing risk factors for dementia) (MoHFW, 2017b) and the Mental Healthcare Act (National Mental Health Programme, 2017) complement the goals of the SDGs.

References:

Ministry of Health and Family Welfare. (2017b). National Programme for Prevention and Control of Cancer, Diabetes, Cardiovascular diseases and Stroke (NPCDCS).

National Mental Health Programme. (2017). National Mental Health Programme. Available from: https://www.nhp.gov.in/national-mental-health-programme_pg

Sustainable Development Solutions Network. (n.d.). Indicators and a Monitoring Framework: Launching a data revolution for the Sustainable Development Goals. Available from: https://indicators.report/targets/3-4/

Not applicable.

The National Policy on Older Persons (NPOP, 1999) confirms the commitment of the government to the well-being of elderly people by recognising important rights including the need to protect them against abuse and exploitation (Government of India, 2014). There is also the Maintenance and Welfare of Parents and Senior Citizens Act (2007), which places the responsibility on children or relatives to take care of the elderly and highlights that neglect or abandonment of elderly people is a punishable offence by law (Ministry of Law and Justice, 2007).

References:

Government of India. (2014). Theme of International Day of Older Persons-‘Leaving No One Behind: Promoting a Society for All” echoes Sab ka Saath Sab ka Vikas.

Ministry of Law and Justice. (2007). Maintenance and welfare of parents and senior citizens Act. Government of India.

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Risk reduction and prevention for dementia is addressed in part through the National Program for Prevention and Control of Cancer, Diabetes, Cardiovascular Diseases, and Stroke (NPCDCS) (MoHFW, 2017b). While the NPCDCS does not specifically mention dementia, it addresses risk factors and co-morbid conditions in persons with dementia. This could involve screening for risk factors and promoting healthy behaviours to reduce the risk of dementia.

References:

Ministry of Health and Family Welfare. (2017b). National Programme for Prevention and Control of Cancer, Diabetes, Cardiovascular diseases and Stroke (NPCDCS).

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The Kerala State Initiative on Dementia (KSID) (Social Justice Department and ARDSI, 2014) addresses dementia awareness and dementia friendly initiatives (through campaigns, pledges, and sensitisation events) at a subnational level.

References:

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

Risk reduction and prevention for dementia is addressed in part through the National Program for Prevention and Control of Cancer, Diabetes, Cardiovascular Diseases, and Stroke (NPCDCS) (MoHFW, 2017b). While the NPCDCS does not specifically mention dementia, it addresses risk factors and co-morbid conditions in persons with dementia. This could involve screening for risk factors and promoting healthy behaviours to reduce risk of dementia.

References:

Ministry of Health and Family Welfare. (2017b). National Programme for Prevention and Control of Cancer, Diabetes, Cardiovascular diseases and Stroke (NPCDCS).

There are courses to improve awareness and knowledge about dementia among the workforce. The Cognitive Neurology subdivision of the Indian Academy of Neurologists conducts teaching courses in cognitive neurology in neurology and psychiatry annually (IAN, n.d.). In addition, geriatric care training was provided by the National Institute of Social Defence (NISD) under the Ministry of Social Justice and Empowerment (National Institute of Social Defence, [NISD], n.d.). This training programme included a module on dementia care (NISD, n.d.). However, this programme is not being continued. The NISD also had a bedside assistants programme (NISD, n.d.), which has also been discontinued.

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 come together to launch the Karnataka Brain Health Initiative (KBHI). KBHI aims to develop a comprehensive strategy to address burden associated with common neurological disorders including dementia in the community (Karnataka Brain Health Initiative (KBHI), 2022). As a part of this initiative, a pilot project to train public primary health care physicians on diagnosing and treating neurological conditions including dementia has been initiated by specialists at NIMHANS in Karnataka (Alladi, 2022).

References:

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

Indian Academy of Neurology. (n.d.). Cognitive Neurology. Available from: https://www.ianindia.org/cognitive-neurology.php

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

National Institute of Social Defence. (n.d). Courses. Ministry of Social Justice and Empowerment. Available from: http://www.nisd.gov.in/old_age_training.html

Not applicable.

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There is no dementia specific legislation at a national level.

The laws relevant to persons with dementia are the following (Government of India, 2016; Ministry of Law and Justice, 2007; Ministry of Law and Justice, 2017; Kumar et al., 2019):

• The Mental Health Care Act (2017),
• The Maintenance and Welfare of Parents and Senior Citizens Act (2007),
• the Rights of Persons with Disabilities Act 2016

References:

Government of India. (2016). The Rights of Persons with Disabilities Act. THE GAZETTE OF INDIA EXTRAORDINARY PART II.

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

Ministry of Law and Justice. (2007). Maintenance and welfare of parents and senior citizens Act. Government of India.

Ministry of Law and Justice. (2017). The Mental Health Care Act 2017. Government of India. Available from: https://egazette.nic.in/WriteReadData/2017/175248.pdf

The Mental Health Care Act (2017) has certain provisions that are relevant to persons with dementia such as advance directives and nominated representatives (Ministry of Law and Justice, 2017; Kumar et al., 2019).

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

Ministry of Law and Justice. (2017). The Mental Health Care Act 2017. Government of India. Available from: https://egazette.nic.in/WriteReadData/2017/175248.pdf

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 elderly people is a punishable offence by law (Ministry of Law and Justice, 2007). In addition, the Rights of Persons with Disabilities Act 2016 and the Mental Health Care Act 2017 highlight protection of rights of people with disabilities and mental health conditions, respectively (Government of India, 2016; Ministry of Law and Justice, 2017).

References:

Government of India. (2016). The Rights of Persons with Disabilities Act. THE GAZETTE OF INDIA EXTRAORDINARY PART II.

Ministry of Law and Justice. (2007). Maintenance and welfare of parents and senior citizens Act. Government of India.

Ministry of Law and Justice. (2017). The Mental Health Care Act 2017. Government of India. Available from: https://egazette.nic.in/WriteReadData/2017/175248.pdf

This section to be updated soon.

This section to be updated soon.

This section to be updated soon.

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 medicine, 43(5 Suppl), S13–S18. https://doi.org/10.1177/02537176211023272

This section to be updated soon.

This section to be updated soon.

This section to be updated soon.

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 elderly people 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.

This section to be updated soon.

The Indian Psychiatric Society (IPS) published Clinical Practice Guidelines (CPGs) for the management of dementia in 2007 and revised this in 2018 (Grover and Avasthi, 2017). In addition, the Diagnostic and Statistical Manual of Mental Disorders-5^th edition (DSM-5) and the International Classification of Diseases-11^th revision (ICD-11) guidelines for dementia are followed by healthcare professionals in India.

References:

Grover, S., and Avasthi, A. (2017). Indian Psychiatric Society Survey on Clinical Practice Guidelines. Indian Journal of Psychiatry, 59(5), 10. https://doi.org/10.4103/0019-5545.196971

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No.

No.

Yes.

Yes.

No.

No.

No.

No.

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Not applicable.

Not applocable.

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Not applocable.

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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).

References:

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/#

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Yes, it is possible that dementia may come under future ageing, NCD or other state level plans.

Yes.

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).

References:

Indian Academy of Neurology. (2022). Home. IAN. Available from: https://www.ianindia.org/

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.

Yes.

The Alzheimer’s and Related Disorder Society of India (ARDSI) has a national office and 22 chapters across the country. ARDSI has conducted numerous dementia public awareness sessions in 2018. They also have conducted over 30 awareness programs targeted towards various sectors of the community.

ARDSI organises several programmes to raise dementia awareness, although these programmes have been primarily concentrated in urban areas. The most noticeable aspects of these programmes are the involvement of various community groups, including students, young people, people with dementia, caregivers, carers, doctors, non-governmental organizations and others who have an active role to play in addressing dementia. The organisation set up twenty awareness campaigns during World Alzheimer’s month. These campaigns raised awareness through multiple mediums such as FM radio, a regional news channel and interviews with various other media outlets. The ARDSI chapters have also introduced campaigns to bring awareness through social media platforms such as Facebook, Twitter, and WhatsApp support groups (ARDSI, 2020).

Some of the mediums used for raising awareness of dementia by the various chapters are as follows:

• The Kolkata chapter reached out to the general population by targeting different sectors each week. These sectors included: health, corporate, transportation, state/local administration, and social support services.
• The Hyderabad Chapter took part in the well-publicized Purple Run and Dementia Ride as part of dementia friendly community project
• The Mumbai Chapter opened the first Dementia Friendly Cafe in India.
• ARDSI Mumbai Chapter & Smriti Vishvam: Universe of Memory is the first dementia day care in India to receive the International Quality Certificate of Registration ISO 9001:2015
• The Delhi and Guwahati chapters raised awareness through radio and television programmes, memory walks, memory screening camps seminars and cultural programmes.
• DemClinic launched by Nightingales Medical Trust (NMT) in association with ARDSI Bangalore, is the first of its kind offering a telemedicine expert-led cognitive assessment platform for the elderly to increase access to dementia screening, diagnosis, and care (NMT, n.d.).
• DemLink App also by NMT aims to educate families of loved ones with dementia and provides access to care and support via a mobile app (NMT, n.d.)
• ARDSI Hyderabad offers a WhatsApp group called ZBCHA which connects dementia
  caregivers and professionals.
• ARDSI Hyderabad conducted a hybrid conference with the theme “Dementia Care in Family and Community—Building Resilience and Hope” in November 2021.

References:

Alzherimer’s and Related Disorders Society of India (2020). World Alzheimer’s Month. Retrieved from https://ardsi.org/wp-content/uploads/2021/01/Ardsi-WAM-2020.pdf

NIGHTINGALES MEDICAL TRUST (n.d.). DemClinic and DemLink. Available from: https://nightingaleseldercare.com/demclinic.html

General awareness campaigns and workshops have been conducted across the country. After initial discussions in 2004, in 2011 the ARDSI chapter in Cochin initiated a campaign to make the city of Cochin (in the state of Kerala) dementia friendly. This was the first time in India, that a dementia friendly campaign was initiated. Training programmes consisting of skill training for school children, student practitioners and home care staff were conducted. These training programmes started in Cochin, but were then extended to Trivandrum, Bangalore, Hyderabad, and other cities.

As part of this dementia friendly initiative, ARDSI conducted five workshops in different cities across the country: Trivandrum, Chennai, Bengaluru, New Delhi, and Cochin. Two hundred participants, including family carers, health and social care professionals and the general public attended these sessions. The workshops encouraged participants to identify the challenges associated with establishing dementia friendly communities. The themes which emerged in these sessions were: government involvement and partnerships, creating awareness, training of health care professionals, a multidisciplinary care approach, a symbol for the dementia friendly community concept, service development and support networks. Following on from these workshops, ARDSI published a document recommending national criteria for dementia friendly communities in India (ARDSI, 2010).

References:

Alzheimer’s and Related Disorders Society of India. (2010). THE DEMENTIA INDIA REPORT 2010: Prevalence, impact, cost and services for dementia. New Dehli. Available from: https://www.mhinnovation.net/sites/default/files/downloads/innovation/reports/Dementia-India-Report.pdf

There is a strong cultural emphasis on children to provide care for their elderly parents in India (Gupta, 2009). It has been reported that it is the women (wife, daughter, daughter-in-law) that predominantly take on primary caregiving roles (Shaji et al., 2003; Brinda et al., 2014). There is low awareness regarding dementia among family caregivers (ARDSI, 2010). For example, a qualitative study in South India conducted with caregivers of persons with Alzheimer’s disease as part of the 10/66 research network demonstrated that the understanding of dementia and its causes is limited (Shaji et al., 2003). The authors also reported a tendency for caregivers to attribute dementia symptoms as “deliberate misbehaviour” (Shaji et al., 2003, pp.2).

References:

Alzheimer’s and Related Disorders Society of India. (2010). THE DEMENTIA INDIA REPORT 2010: Prevalence, impact, cost and services for dementia. New Dehli. Available from: https://www.mhinnovation.net/sites/default/files/downloads/innovation/reports/Dementia-India-Report.pdf

Brinda, E. M., Rajkumar, A. P., Enemark, U., Attermann, J., & Jacob, K. (2014). Cost and Burden of informal caregiving of dependent older people in a rural Indian community. BMC Health Services Research, 14(1), 207. https://doi.org/10.1186/1472-6963-14-207

Gupta, R. (2009). Systems Perspective: Understanding Care Giving of the Elderly in India. Health Care for Women International, 30(12), 1040–1054. https://doi.org/10.1080/07399330903199334

Shaji, K. S., Smitha, K., Lal, K. P., Prince, M. J. (2003). Caregivers of people with Alzheimer’s disease: a qualitative study from the Indian 10/66 Dementia Research Network. International Journal of Geriatric Psychiatry, 18(1), 1–6.

Not applicable.

The existing cultural context (practices and beliefs) has a major role in shaping attitudes and behaviours towards dementia in India (Kumar, et al., 2019). Low levels of awareness or stigma amongst the family, community and health professionals can considerably influence perceptions of dementia (Kumar etl., 2019; Shaji et al., 2003) and help-seeking in the country (Nulkar et al., 2019; ARDSI, 2010).

References:

Alzheimer’s and Related Disorders Society of India. (2010). THE DEMENTIA INDIA REPORT 2010: Prevalence, impact, cost and services for dementia. New Dehli. Available from: https://www.mhinnovation.net/sites/default/files/downloads/innovation/reports/Dementia-India-Report.pdf

Kumar, C. S., George, S., & Kallivayalil, R. A. (2019). Towards a Dementia-Friendly India. Indian journal of psychological medicine, 41(5), 476–481. https://doi.org/10.4103/IJPSYM.IJPSYM_25_19

Nulkar A, Paralikar V, Juvekar S. Dementia in India – a call for action. Journal of Global Health Reports. 2019;3:e2019078. doi:10.29392/joghr.3.e2019078

Shaji, K. S., Smitha, K., Lal, K. P., Prince, M. J. (2003). Caregivers of people with Alzheimer’s disease: a qualitative study from the Indian 10/66 Dementia Research Network. International Journal of Geriatric Psychiatry, 18(1), 1–6.

Most of the public awareness campaigns were conducted out of funds mobilised by ARDSI and, thus, no impact study was conducted. Two campaigns conducted by the ARDSI national office in Kerala had local state funding as part of the Kerala State Initiative on Dementia (KSID project) (Social Justice Department and ARDSI, 2014). Feedback was collected at some of the sites where the project was implemented; however, these records are not publicly available.

References:

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

No governmental programs exist that routinely monitor number of people with dementia in India.

No governmental programs exist that routinely monitor number of people with dementia in India.

Memory clinics and specialist services in a few hospitals record the number of people with dementia referred to their service (Alladi et al., 2011; Nair et al., 2012; Pal et al., 2013; Tripathi et al., 2015). The primary goal of maintaining a dementia registry is to provide multidisciplinary care and conduct research related to clinical characteristics of these patients. However, not all persons with dementia seeking help in these hospitals are referred to the clinics. This is due to low awareness among both patients and professionals and the large number of patients who often cannot be catered for by the memory clinics. Another challenge faced by registries is that they exist only for the period of the research project and, as a result, tend to focus on specific areas of their research interest. More recently, the Government of India, through the Department of Biotechnology (DBT), has set up a project to develop a network of dementia registries across major academic institutions in different parts of the country to collect information about the burden, pattern of subtypes, risk factors and care needs of persons with dementia in the Indian context (Bhatt, 2020).

References:

Alladi, S., Mekala, S., Chadalawada, S. K., Jala, S., Mridula, R., & Kaul, S. (2011). Subtypes of \Dementia: A Study from a Memory Clinic in India. Dementia and Geriatric Cognitive Disorders, 32(1), 32–38. https://doi.org/10.1159/000329862

Bhatt (2020). DBT’s multi-centric Dementia Science Programme. Vigyan Samachar. Available from: https://vigyanprasar.gov.in/wp-content/uploads/DBT%E2%80%99s-multi-centric-Dementia-Science-Programme-10apr20.pdf

Nair, G., Van Dyk, K., Shah, U., Purohit, D. P., Pinto, C., Shah, A. B., …& Sano, M. (2012). Characterizing Cognitive Deficits and Dementia in an Aging Urban Population in India. International Journal of Alzheimer’s Disease, 2012, 1–8. https://doi.org/10.1155/2012/673849

Pal, S., Sanyal, D., Biswas, A., Paul, N., & Das, S. K. (2013). Visual Manifestations in Alzheimer’s disease. American Journal of Alzheimer’s Disease & Other Dementias, 28(6), 575–582. https://doi.org/10.1177/1533317513494448

Tripathi, R., Kumar, K., Balachandar, R., Marimuthu, P., Varghese, M., & Bharath, S. (2015). Neuropsychological markers of mild cognitive impairment: A clinic based study from urban India. Annals of Indian Academy of Neurology, 18(2), 177–180. https://doi.org/10.4103/0972-2327.150566

NGOs are not formally monitoring the number of dementia cases seen at their centres.

Data is not routinely monitored by governmental organisations, research-led organisations, and NGOs.

Not applicable.

Not applicable.

Not applicable.

Prevalence of dementia has been reported based on several population based epidemiological studies conducted across India over the last two decades. According to the Dementia India Report 2010 (Alzheimer’s and Related Disorders of India [ARDSI], 2010) projections, an estimated 5.29 million Indian people aged over 60 have dementia. The more recent Global Burden of Disease study estimated that 3.69 million people had Alzheimer’s disease or other dementias in India in 2019 (India State-Level Disease Burden Initiative Neurological Disorders Collaborators, 2021). There is variability in reported prevalence rates ranging from 0.3% (Rodriguez et al., 2008) to 14.9% (Seby et al., 2011) among older adults, depending on the sample size, age of the cohort, geographical area considered (rural vs. urban population) and the year of the study (Table 6.1). Meta-analysis of individual studies have reported pooled prevalence estimates for dementia to range from 3.4% (95% CI = 2.0 to 5.0) to 4.4% (2.2-7.2) in India (Dhiman et al., 2021; Farina et al, 2020).

Differences in estimates may be related to the adoption of different methods and defining criteria, but differences in environmental and genetic risk factors may also contribute. Recognising the need to study dementia prevalence using a uniform method, the Government of India’s scientific research funding agency, specifically the Department of Biotechnology, has initiated a multi-centric study across rural, urban, and tribal areas to observe dementia prevalence (Bhatt, 2020).

Table 6.1 shows dementia prevalence across the country

Table Source: (Razdan et al., 1994;  Shaji et al., 1996; Rajkumar, Kumar and Thara, 1997; Chandra et al., 1998; Vas et al., 2001; Shaji, Bose and Verghese, 2005; Rodriguez et al., 2008; Das et al., 2006; Das et al., 2007; Das et al., 2008; Raina et al., 2008; Mathuranath et al., 2010 ; Saldanha et al., 2010; Seby, Chaudhary and Chakraborty, 2011, Poddar et al., 2011; Raina et al., 2014; Raina, Chander and Bhardwaj, 2016; Banerjee et al., 2017).

Moreover, there are few studies reporting incidence of dementia in India and results are varied (Table 6.2).

Table 6.2 shows studies reporting incidence rates for dementia in India

Source: (Chandra et al., 2001; Mathuranath et al., 2012; Banerjee et al., 2017)

References:

Alzheimer’s and Related Disorders Society of India. (2010). THE DEMENTIA INDIA REPORT 2010: Prevalence, impact, cost and services for dementia. New Delhi. Available from:  https://ardsi.org/pdf/annual%20report.pdf

Banerjee, T. K., Dutta, S., Das, S., Ghosal, M., Ray, B. K., Biswas, A.,… & Das, S. K. (2017). Epidemiology of dementia and its burden in the city of Kolkata, India. International Journal of Geriatric Psychiatry, 32(6), 605–614. https://doi.org/10.1002/gps.4499

Banerjee, T. K., Mukherjee, C. S., Dutt, A., Shekhar, A., & Hazra, A. (2008). Cognitive dysfunction in an urban Indian population: some observations. Neuroepidemiology, 31(2), 109–114. https://doi.org/10.1159/000146252

Bhatt, B. (2020). DBT’s multi-centric Dementia Science Programme. Vigyan Samachar. Available from: https://vigyanprasar.gov.in/wp-content/uploads/DBT%E2%80%99s-multi-centric-Dementia-Science-Programme-10apr20.pdf

Chandra, V., Ganguli, M., Pandav, R., Johnston, J., Belle, S., & DeKosky, S. T. (1998). Prevalence of Alzheimer’s disease and other dementias in rural India: the Indo-US study. Neurology, 51(4),1000–1008. https://doi.org/10.1212/wnl.51.4.1000

Chandra, V., Pandav, R., Dodge, H. H., Johnston, J. M., Belle, S. H., DeKosky, S. T., & Ganguli, M. (2001). Incidence of Alzheimer’s disease in a rural community in India: the Indo-US study. Neurology, 57(6), 985–989. https://doi.org/10.1212/wnl.57.6.985

Das, S. K., Biswas, A., Roy, J., Bose, P., Roy, T., Banerjee, T. K., … & Hazra, A. (2008). Prevalence of major neurological disorders among geriatric population in the metropolitan city of Kolkata. The Journal of the Association of Physicians of India, 56, 175–181. Retrieved from: http://www.ncbi.nlm.nih.gov/pubmed/18697633

Das, S. K., Biswas, A., Roy, T., Banerjee, T. K., Mukherjee, C. S., Raut, D. K., & Chaudhuri, A. (2006). A random sample survey for prevalence of major neurological disorders in Kolkata. Indian Journal of Medical Research, 124(2), 163.

Das, S. K., Bose, P., Biswas, A., Dutt, A., Banerjee, T. K., Hazra, A. M., …& Roy, T. (2007). An epidemiologic study of mild cognitive impairment in Kolkata, India. Neurology, 68(23), 2019–2026. https://doi.org/10.1212/01.wnl.0000264424.76759.e6

Dhiman, V., Menon, G. R., Kaur, S., Mishra, A., John, D., Rao Vishnu, M. V., Tiwari, R. R., & Dhaliwal, R. S. (2021). A Systematic Review and Meta-analysis of Prevalence of Epilepsy, Dementia, Headache, and Parkinson Disease in India. Neurology India, 69(2), 294–301. https://doi.org/10.4103/0028-3886.314588

Farina, N., Ibnidris, A., Alladi, S., Comas-Herrera, A., Albanese, E., Docrat, S., Ferri, C. P., Freeman, E., Govia, I., Jacobs, R., Astudillo-Garcia, C. I., Musyimi, C., Sani, T. P., Schneider, M., Theresia, I., Turana, Y., Knapp, M., & and, S. B. (2020). A systematic review and meta-analysis of dementia prevalence in seven developing countries: A STRiDE project. Global Public Health, 1–16. https://doi.org/10.1080/17441692.2020.1792527

India State-Level Disease Burden Initiative Neurological Disorders Collaborators (2021). The burden of neurological disorders across the states of India: The Global Burden of Disease Study 1990-2019. The Lancet. Global health, 9(8), e1129–e1144.

Mathuranath, P. S., Cherian, P. J., Mathew, R., Kumar, S., George, A., Alexander, A.,  Sarma, P. S. (2010). Dementia in Kerala, South India: prevalence and influence of age, education and gender.International Journal of Geriatric Psychiatry, 25(3), 290–297. https://doi.org/10.1002/gps.2338

Mathuranath, P., Menon, R., Ranjith, N., Sarma, Ps., Verghese, J., George, A., …& Kumar, Ms. (2012). Incidence of Alzheimer′s disease in India: A 10 years follow-up study. Neurology India, 60(6), 625. https://doi.org/10.4103/0028-3886.105198

Poddar, K., Kant, S., Singh, A., & Singh, T. B. (2011). An epidemiological study of dementia among the habitants of eastern Uttar Pradesh, India. Annals of Indian Academy of Neurology, 14(3), 164–168. https://doi.org/10.4103/0972-2327.85874

Raina, S. K., Chander, V., & Bhardwaj, A. (2016). Dementia in a tribal landlocked elderly population at high altitude: What explains the lower prevalence?. Journal of neurosciences in rural practice, 7(3), 419–422. https://doi.org/10.4103/0976-3147.182775

Raina, S. K., Raina, S., Chander, V., Grover, A., Singh, S., & Bhardwaj, A. (2014). Is dementia differentially distributed? A study on the prevalence of dementia in migrant, urban, rural, and tribal elderly population of himalayan region in northern India. North American Journal of Medical Sciences, 6(4), 172–177. https://doi.org/10.4103/1947-2714.131243

Raina, S., Raina, S., Razdan, S., & Pandita, K. (2008). Prevalence of dementia among Kashmiri migrants. Annals of Indian Academy of Neurology, 11(2), 106. https://doi.org/10.4103/0972-2327.41878

Rajkumar, S., Kumar, S., & Thara, R. (1997). PREVALENCE OF DEMENTIA IN A RURAL SETTING: A REPORT FROM INDIA. International Journal of Geriatric Psychiatry, 12(7), 702–707. https://doi.org/10.1002/(SICI)1099-1166(199707)12:7<702::AID-GPS489>3.0.CO;2-H

Razdan, S., Kaul, R. L., Motta, A., Kaul, S., & Bhatt, R. K. (1994). Prevalence and Pattern of Major Neurological Disorders in Rural Kashmir (India) in 1986. Neuroepidemiology, 13(3), 113–119. https://doi.org/10.1159/000110368

Rodriguez, J. J. L., Ferri, C. P., Acosta, D., Guerra, M., Huang, Y., Jacob, K., … &10/66 Dementia  Research Group. (2008). Prevalence of dementia in Latin America, India, and China: A population-based cross-sectional survey. The Lancet, 372(9637), 464–474. https://doi.org/10.1016/S0140-6736(08)61002-8

Saldanha, D., Mani, M. R., Srivastava, K., Goyal, S., & Bhattacharya, D. (2010). An epidemiological study of dementia under the aegis of mental health program, Maharashtra, Pune chapter. Indian Journal of Psychiatry, 52(2), 131–139. https://doi.org/10.4103/0019-5545.64588

Seby, K., Chaudhury, S., & Chakraborty, R. (2011). Prevalence of psychiatric and physical morbidity in an urban geriatric population. Indian journal of psychiatry, 53(2), 121. https://doi.org/10.4103/0019-5545.82535

Shaji, S., Bose, S., & Verghese, A. (2005). Prevalence of dementia in an urban population in Kerala, India. British Journal of Psychiatry, 186(2), 136–140. https://doi.org/10.1192/bjp.186.2.136

Shaji, S., Promodu, K., Abraham, T., Roy, K. J., & Verghese, A. (1996). An Epidemiological Study of Dementia in a Rural Community in Kerala, India. British Journal of Psychiatry, 168(6), 745–749. https://doi.org/10.1192/bjp.168.6.745.

Vas, C. J., Pinto, C., Panikker, D., Noronha, S., Deshpande, N., Kulkarni, L., …& Sachdeva, S. (2001). Prevalence of Dementia in an Urban Indian Population. International Psychogeriatrics,13(4), 439–450. https://doi.org/10.1017/S1041610201007852

As per the Global Burden of Disease (GBD) study (India State-Level Disease Burden Initiative Neurological Disorders Collaborators, 2021), an estimated 129,000 deaths were attributed to Alzheimer’s disease and other dementias in 2019. GBD estimates (2019) indicate there were 117.14 Years of Life Lost (YLL’s) per 100,000 due to dementia (IHME, 2019).

References:

India State-Level Disease Burden Initiative Neurological Disorders Collaborators (2021). The burden of neurological disorders across the states of India: The Global Burden of Disease Study 1990-2019. The Lancet. Global health, 9(8), e1129–e1144.

Institute for Health Metrics and Evaluation (IHME) (2019).  GBD Compare. Seattle, WA: IHME, University of Washington, Available from http://vizhub.healthdata.org/gbd-compare.

The GBD estimates (2019) that the YLD’s due to dementia were 35.7 per 100,000 (IHME, 2019).

References:

Institute for Health Metrics and Evaluation (IHME). (2019).  GBD Compare. Seattle, WA: IHME, University of Washington, Available from http://vizhub.healthdata.org/gbd-compare.

As per the Global Burden of Disease (GBD) study (India State-Level Disease Burden Initiative Neurological Disorders Collaborators, 2021), 3.69 million people were living with Alzheimer’s disease and other dementias in 2019 in India. The GBD study (India State-Level Disease Burden Initiative Neurological Disorders Collaborators, 2021) also provides state-wise prevalence and crude DALY rate for Alzheimer’s disease and other dementias per 100,000 in 2019 (Table 6.3).

Table 6.3 depicts state wise prevalence and crude DALY rate (2019) – per 100,000

Source: (India State-Level Disease Burden Initiative Neurological Disorders Collaborators, 2021 (Data From Figure 2 and Supplementary Document)).

The numbers of persons with dementia are further estimated to increase by 197% between 2019-2050 in India, with 11.4 million people projected to live with dementia in India in 2050 (GBD 2019 Dementia Forecasting Collaborators, 2022).

References:

GBD 2019 Dementia Forecasting Collaborators. (2022). Estimation of the global prevalence of dementia in 2019 and forecasted prevalence in 2050: an analysis for the Global Burden of Disease Study 2019. The Lancet Public Health.

India State-Level Disease Burden Initiative Neurological Disorders Collaborators (2021). The burden of neurological disorders across the states of India: The Global Burden of Disease Study 1990-2019. The Lancet. Global health, 9(8), e1129–e1144.

The age of onset of dementia has been studied in dementia cohorts and evaluated in hospital-based studies. In India, the proportion of patients with early-onset dementia is higher (49.9%) in comparison to developed countries (7-30%) (Das, Ghosal and Pal, 2012; Alladi et al., 2011). A study examining subtypes of dementia from a memory clinic in South India reported the mean age of onset of dementia as 66.3 years (Alladi et al., 2011). This is likely to be reflective of the demographic and epidemiologic profile of India. For example, lower levels of education and socioeconomic status, contribute to a higher number of individuals with vascular dementia (who are typically younger than persons with AD patient) (Alladi et al, 2011). Furthermore, lower referral rates of older elderly to hospitals as a result of lack of awareness and ‘sociocultural’ protection of elderly with memory loss in developing countries may also be contributing towards the lower age of onset reported by clinic studies (Alladi et al., 2011).

References:

Alladi, S., Mekala, S., Chadalawada, S. K., Jala, S., Mridula, R., & Kaul, S. (2011). Subtypes of \Dementia: A Study from a Memory Clinic in India. Dementia and Geriatric Cognitive Disorders, 32(1), 32–38. https://doi.org/10.1159/000329862

Das, S., Ghosal, M., & Pal, S. (2012). Dementia: Indian scenario. Neurology India, 60(6), 618. https://doi.org/10.4103/0028-3886.105197

There is no information available on the average life expectancy with dementia in India.

Prevalence by age/gender

The GBD (India State-Level Disease Burden Initiative Neurological Disorders Collaborators, 2021) study provides a breakdown of dementia prevalence as per age and gender, demonstrating higher prevalence of dementia among women than men in India. This is available on Page 125 of the Supplementary document: https://www.thelancet.com/cms/10.1016/S2214-109X(21)00164-9/attachment/26ff536c-3eec-45f7-897a-183dc4e7777e/mmc1.pdf

Prevalence by ethnic groups

The prevalence of dementia across ethnic groups has not been widely studied in India. One study conducted in the state of Jammu and Kashmir examined the prevalence of dementia among the ethnic Dogra population compared to the migrant Kashmiri Pandit population (Raina, Razdan and Pandita, 2010; Raina et al., 2008). The study reported overall prevalence of dementia in those aged 60 and over as 1.83% in the ethnic Dogra population, which was lower than the prevalence rate among the migrant Kashmiri Pandits (6.5%) reported in an earlier study (Raina, Razdan and Pandita, 2010, Raina et al., 2008).

References:

India State-Level Disease Burden Initiative Neurological Disorders Collaborators (2021). The burden of neurological disorders across the states of India: The Global Burden of Disease Study 1990-2019. The Lancet. Global health, 9(8), e1129–e1144.

Raina, S. K., Razdan, S., & Pandita, K. K. (2010). Prevalence of dementia in ethnic Dogra population of Jammu district, North India: a comparison survey. Neurology Asia, 15(1).

Raina, S., Raina, S., Razdan, S., & Pandita, K. (2008). Prevalence of dementia among Kashmiri migrants. Annals of Indian Academy of Neurology, 11(2), 106. https://doi.org/10.4103/0972-2327.41878

The  prevalence of AIDS associated dementia is relatively low (1-2% of persons infected with HIV) in the Indian context (Ranga et al., 2004; Satischandra et al., 2000; Wadia et al., 2001).

References:

Ranga, U., Shankarappa, R., Siddappa, N. B., Ramakrishna, L., Nagendran, R., Mahalingam, M., Mahadevan, A., Jayasuryan, N., Satishchandra, P., Shankar, S. K., & Prasad, V. R. (2004). Tat protein of human immunodeficiency virus type 1 subtype C strains is a defective chemokine. Journal of virology, 78(5), 2586–2590. https://doi.org/10.1128/jvi.78.5.2586-2590.2004

Satishchandra, P., Nalini, A., Gourie-Devi, M., Khanna, N., Santosh, V., Ravi, V., … & Shankar, S. K. (2000). Profile of neurologic disorders associated with HIV/AIDS from Bangalore, south India (1989-96). Indian Journal of Medical Research, 111, 14-23.

Wadia, R. S., Pujari, S. N., Kothari, S., Udhar, M., Kulkarni, S., Bhagat, S., & Nanivadekar, A. (2001). Neurological manifestations of HIV disease. The Journal of the Association of Physicians of India, 49, 343-348.

Some of the common conditions that have been found to accelerate the ageing process and affect longevity in developing countries are early exposure to adverse conditions such as poverty, malnutrition, prenatal stress, and infectious diseases (Kalaria et al., 2008). Poverty, low literacy and lower socioeconomic status have been found to be closely linked and further associated with poor access to health care and thus an increased risk of cognitive impairment (Sengupta et al., 2014).

References:

Kalaria, R. N., Maestre, G. E., Arizaga, R., Friedland, R. P., Galasko, D., Hall, K., … & Prince, M. (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

Sengupta, P., Benjamin, A. I., Singh, Y., & Grover, A. (2014). Prevalence and correlates of cognitive impairment in a north Indian elderly population. WHO South-East Asia journal of public health, 3(2), 135-143. https://doi.org/10.4103/2224-3151.206729

Currently, there is no programme that specifically targets dementia in India at a national level. However, the Government of India has launched the National Programme for Prevention and Control of Cancer, Diabetes, Cardiovascular diseases and Stroke (NPCDCS) (Ministry of Health and Family Welfare [MoHFW], 2017), which aims at targeting risk factors for non-communicable diseases that are also risk factors for dementia.

References:

Ministry of Health and Family Welfare. (2017). National Programme for Prevention and Control of Cancer, Diabetes, Cardiovascular diseases, and Stroke (NPCDCS).

Few studies have examined the associations of various factors with mild cognitive impairment/dementia across different regions in India. This has been summarised in Table 6.4.

Table 6.4.

Source: (Das et al., 2007; India State-Level Disease Burden Initiative Neurological Disorders Collaborators, 2021; Iyer et al., 2014; Lalu et al., 2018; Sengupta et al., 2014; Sengupta and Benjamin, 2015; Shaji et al., 1996; Sumana et al., 2016)

In addition, a cross-sectional study of potentially modifiable risk factors for dementia reported less education, hearing impairment, depression, and physical inactivity, in particular, to be associated with increased odds of dementia in India (Belessiotis-Richards et al., 2021).

The risk factors in Table 6.4 are similar to previously identified potentially modifiable risk factors (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) for dementia, which, if addressed, may delay up to 41% of dementia in India (Mukadam et al., 2019).

References:

Chandra, M., & Anand, K. S. (2015). Obesity in Indian subjects with vascular dementia. International Journal of Advances in Medicine, 2(2), 147.

Belessiotis-Richards, C., Livingston, G., Marston, L., & Mukadam, N. (2021). A cross-sectional study of potentially modifiable risk factors for dementia and cognitive function in India: A secondary analysis of 10/66, LASI, and SAGE data. International journal of geriatric psychiatry, 37(2), 10.1002/gps.5661. Advance online publication. https://doi.org/10.1002/gps.5661

Das, S. K., Bose, P., Biswas, A., Dutt, A., Banerjee, T. K., Hazra, A. M., …& Roy, T. (2007). An epidemiologic study of mild cognitive impairment in Kolkata, India. Neurology, 68(23), 2019–2026. https://doi.org/10.1212/01.wnl.0000264424.76759.e6

India State-Level Disease Burden Initiative Neurological Disorders Collaborators (2021). The burden of neurological disorders across the states of India: The Global Burden of Disease Study 1990-2019. The Lancet. Global health, 9(8), e1129–e1144.

Iyer, G. K., Alladi, S., Bak, T. H., Shailaja, M., Mamidipudi, A., Rajan, A., … & Kaul, S. (2014). Dementia in developing countries: Does education play the same role in India as in the West? Dementia & Neuropsychologia, 8(2), 132–140. https://doi.org/10.1590/S1980-57642014DN82000008

Lalu, J. S., Vijayakumar, P., George, S., Nair, A. V., & B., A. (2018). Risk factors of dementia: a comparative study among the geriatric age group in Ernakulam, Southern India. International Journal Of Community Medicine And Public Health, 5(2), 544. https://doi.org/10.18203/2394-6040.ijcmph20180117

Livingston, G., Huntley, J., Sommerlad, A., Ames, D., Ballard, C., Banerjee, S., … & Mukadam, N. (2020). Dementia prevention, intervention, and care: 2020 report of the Lancet Commission. The Lancet, 396(10248), 413-446.

Mukadam, N., Sommerlad, A., Huntley, J., & Livingston, G. (2019). Population attributable fractions for risk factors for dementia in low-income and middle-income countries: an analysis using cross-sectional survey data. The Lancet Global Health, 7(5), e596-e603.

Sengupta, P., & Benjamin, A. I. (2015). Prevalence of depression and associated risk factors among the elderly in urban and rural field practice areas of a tertiary care institution in Ludhiana. Indian journal of public health, 59(1), 3. https://doi.org/10.4103/0019-557X.152845

Sengupta, P., Benjamin, A. I., Singh, Y., & Grover, A. (2014). Prevalence and correlates of cognitive impairment in a north Indian elderly population. WHO South-East Asia journal of public health, 3(2), 135-143. https://doi.org/10.4103/2224-3151.206729

Shaji, S., Promodu, K., Abraham, T., Roy, K. J., & Verghese, A. (1996). An Epidemiological Study of Dementia in a Rural Community in Kerala, India. British Journal of Psychiatry, 168(6), 745–749. https://doi.org/10.1192/bjp.168.6.745.

Sumana, M., Sreelatha, C.Y., Sreeranga, A., Arpitha,B., Akshatha, S., & Anand, H. (2016). Prevalence of dementia and other psychiatric morbidities among geriatric population of Salagame primary health centre in Hassan district, Karnataka, India. International Journal of Community Medicine and Public Health, 3(5), 1315–1317. https://doi.org/10.18203/2394-6040.ijcmph20161404

Tripathi, M., Vibha, D., Gupta, P., Bhatia, R., Srivastava, M.V.P., Vivekanandhan, S., Bhushan Singh, M., Prasad, K., Dergalust, S., Mendez, M.F. (2012). Risk factors of dementia in North India: a case–control study. Aging Ment. Health 16, 228–235. https://doi.org/10.1080/13607863.2011.583632

According to the 2011 Census, the overall literacy rate was reported as 74.04% (65.46% for women and over 80% for men) among the Indian population (Census, of India, 2011).

References:

Census of India. (2011). Literacy in India. Available from: https://www.census2011.co.in/literacy.php

A cross-sectional study examining data (811,917 participants) from the National Family Health Survey 2015-2016 reported that the age adjusted prevalence rate of hypertension was 11.3% in India in persons aged between 15-49 (Ghosh and Kumar, 2019). The study also reported variations in hypertension age-adjusted prevalence across states, ranging from 8.2% in Kerala to 20.3% in Sikkim (Ghosh and Kumar, 2019).

Another study based on a national level survey carried out in 2015 examining blood pressure across 24 states and UTs (180,335 participants had their blood pressure recorded) in India, reported overall prevalence of hypertension as 30.7% (95% CI: 30.5, 30.9) (Ramakrishnan et al., 2019).

References:

Ghosh, S., & Kumar, M. (2019). Prevalence and associated risk factors of hypertension among persons aged 15–49 in India: a cross-sectional study. BMJ open, 9(12), e029714.

Ramakrishnan, S., Zachariah, G., Gupta, K., Rao, J. S., Mohanan, P. P., Venugopal, K., … & Banerjee, S. C. A. (2019). Prevalence of hypertension among Indian adults: results from the great India blood pressure survey. Indian heart journal, 71(4), 309-313.

The  ICMR-INDIAB 2015 study examining prevalence of obesity across 3 states (Tamil Nadu, Maharashtra, Jharkhand) and one UT (Chandigarh) reported obesity and abdominal obesity prevalence in India to vary between 11.8% to 31.3% and 16.9% to 36.3% respectively (Pradeepa et al., 2015). A more recent study (Venkatrao et al., 2021) examining data of around 1 lakh participants from phase 1 of a nationwide randomised cluster survey (Niyantrita Madhumeha Bharata), revealed the overall prevalence of obesity to be 40.3% in India, with wide variations across different regions of the country.

References:

Pradeepa, R., Anjana, R. M., Joshi, S. R., Bhansali, A., Deepa, M., Joshi, P. P., & Group, the I.-I. C. S. (2015). Prevalence of generalized &amp; abdominal obesity in urban &amp; rural India- the ICMR – INDIAB Study (Phase-I) [ICMR – INDIAB-3]. The Indian Journal of Medical Research, 142(2), 139. https://doi.org/10.4103/0971-5916.164234

Venkatrao, M., Nagarathna, R., Majumdar, V., Patil, S. S., Rathi, S., & Nagendra, H. (2021). Prevalence of Obesity in India and Its Neurological Implications: A Multifactor Analysis of a Nationwide Cross-Sectional Study. Annals of Neurosciences, 27(3-4), 153-161. https://doi.org/10.1177/0972753120987465

As per the WHO estimates, it is estimated that around 63 million (6.3%) people have significant auditory impairment in India (Garg et al., 2009).

References:

Garg, S., Chadha, S., Malhotra, S., & Agarwal, A. K. (2009). Deafness: Burden, prevention and control in India. Natl Med J India, 22(2), 79-81.

As per the Global Adult Tobacco Survey 2016-2017 in India, 28.6% of all adults (15 and above) are tobacco users (National Health Mission, n.d.).

References:

National Health Mission (n.d.). Global Adult Tobacco Survey 2 Highlights India 2016-2017. Government of India. Available from: https://nhm.gov.in/NTCP/Surveys-Reports-Publications/GATS-2-Highlights-(National-level).pdf

The National Mental Health Survey 2015-2016 conducted by the National Institute of Mental Health and Neurosciences (NIMHANS) reports that the ICD – 10 DCR prevalence of depressive disorders is 5.1% (lifetime) and 2.7% (current) among adults of over 18 years of age in India (National Institute of Mental Health and Neurosciences [NIMHANS], 2016).

References:

National Institute of Mental Health and Neurosciences. (2016). National Mental Health Survey of India, 2015-2016: Prevalence, Patterns and Outcomes. National Institute of Mental Health and Neurosciences. Available from http://indianmhs.nimhans.ac.in/Docs/Report2.pdf

According to an ICMR-INDIAB study (Anjana et al., 2014), physical activity was assessed using the Global Physical Activity Questionnaire (GPAQ) in 14,227 individuals aged above 20 years across 4 parts of India – Tamil Nadu, Maharashtra, Jharkhand, and Chandigarh, representing the south, west, east, and north of India, respectively. In this study, of the 14,227 individuals studied, 54.4% (n = 7,737) were found to be inactive (Anjana et al., 2014). A more recent study analysed data of around 2 lakh individuals from the Niyantrita Madhumeha Bharata 2017 randomised cluster survey and reported that 20% of the sample were physically inactive (Podder et al., 2020).

References:

Anjana, R. M., Pradeepa, R., Das, A. K., Deepa, M., Bhansali, A., Joshi, S. R., … & Subashini, R. (2014). Physical activity and inactivity patterns in India–results from the ICMR-INDIAB study (Phase-1) [ICMR-INDIAB-5]. International Journal of Behavioral Nutrition and Physical Activity, 11(1), 26. https://doi.org/10.1186/1479-5868-11-26

Podder, V., Nagarathna, R., Anand, A., Patil, S. S., Singh, A. K., & Nagendra, H. R. (2020). Physical activity patterns in India stratified by zones, age, region, BMI, and implications for COVID-19: a nationwide study. Annals of Neurosciences, 27(3-4), 193-203. https://doi.org/10.1177/0972753121998507

The ICMR – INDIAB study reported that the overall prevalence of diabetes in all 15 states of India was 7.3% in 2015 (95% CI 7.0–7.5) (Anjana et al., 2017). The more recent National Diabetes and Diabetic Retinopathy Survey of India 2015-2019 reported the prevalence of diabetes in surveyed population (63,000 aged 50 and above in 21 districts) to be 11.8% (All India Institute of Medical Sciences (AIIMS, 2019)).

References:

All India Institute of Medical Sciences. National Diabetes and Diabetic Retinopathy Survey of India 2015-2019. n.d. National Program for Control of Blindness and Visual Impairment, Directorate General of Health Services, Ministry of Health and Family Welfare, Government of India. Available from: https://npcbvi.gov.in/writeReadData/mainlinkFile/File342.pdf

Anjana, R. M., Deepa, M., Pradeepa, R., Mahanta, J., Narain, K., Das, H. K., …. Bhansali, A. (2017). Prevalence of diabetes and prediabetes in 15 states of India: results from the ICMR–INDIAB population-based cross-sectional study. The lancet Diabetes & endocrinology, 5(8), 585-596. https://doi.org/10.1016/S2213-8587(17)30174-2

According to the World Health Organisation’s Global Health Observatory, the amount of alcohol consumed per capita (15+) in India in 2018 was 3.09 litres (World Health Organization, 2018).

References:

World Health Organization. 2018. Global Health Observatory-Alcohol recorded per capita (15+) consumption (in litres of pure alcohol). World Health Organization. Available from: https://www.who.int/data/gho/data/indicators/indicator-details/GHO/alcohol-recorded-per-capita-(15-)-consumption-(in-litres-of-pure-alcohol)

A review of population-based studies in India had reported that high cholesterol is prevalent in 25-30% and 15-20% of urban and rural residents, respectively (Gupta et al., 2017).

References:

Gupta, R., Rao, R. S., Misra, A., & Sharma, S. K. (2017). Recent trends in epidemiology of dyslipidemias in India. Indian heart journal, 69(3), 382-392.

Families usually approach general physicians for the assessment of their older relative showing symptoms suggestive of dementia. Specialists who are trained in dementia (neurologists, psychiatrists, or geriatrics) would deliver a diagnosis, but there are some primary physicians with an MBBS degree (Bachelor of Medicine, Bachelor of Surgery) who diagnose dementia without having special qualification or specific training to do so (Kumar et al., 2018). Families are advised by primary physicians to visit specialists for diagnosis and treatment, but due to lack of availability of adequate specialists, costs associated with services, and low levels of awareness, very few families may visit specialists (Kumar et al., 2018; Sathianathan & Kantipudi, 2018).

In summary, persons with dementia and their families may consult a general practitioner based on their convenience and prior experiences (Hossein et al., 2017). They may also see a specialist directly or may be referred to one (i.e., the specialist that usually provides the dementia diagnosis) (Hossien et al., 2017).

References:

Hossien, S.A., Loganathan, S., Kolar Sridara Murthy, M., Palanimuthu Thangaraju, S., Bharath, S., Varghese, M., 2017. Pathways to care among persons with dementia: Study from a tertiary care center. Asian J. Psychiatr. 30, 59–64. https://doi.org/10.1016/J.AJP.2017.07.002

Kumar, CT Sudhir; Kishore, S., 2018. The dementia diagnosis process, Part 1: Getting started and selecting a doctor | Dementia Care Notes. Available from: https://dementiacarenotes.in/dementia-diagnosis-find-doctor/

Sathianathan, & Kantipudi, S. J. (2018). The dementia epidemic: Impact, prevention, and challenges for India. Indian Journal of Psychiatry, 60(2), 165. https://doi.org/10.4103/PSYCHIATRY.INDIANJPSYCHIATRY_261_18

1 out of 10 people receive a dementia diagnosis, treatment, or any care in India (Nulkar et al., 2019).

References:

Nulkar A, Paralikar V, Juvekar S. (2019). Dementia in India – a call for action. Journal of Global Health Reports. 2019;3:e2019078. doi:10.29392/joghr.3.e2019078

Not applicable.

There are differences in diagnostic assessment across the country due to diversity in demographics (rural/urban, region and state) and socioeconomic status. Diagnostic tools have been developed and/or adapted to account for this diversity. The Indian Council of Medical Research (ICMR), Department of Health Research (2021), released a Neurocognitive Tool Box. It is culturally validated and available in 5 Indian languages (Hindi, Bengali, Telugu, Kannada and Malayalam) (ICMR, 2021). The 10/66 Dementia Research Group has developed a cross-culturally validated dementia diagnostic algorithm (Prince et al., 2008). There are also other neuropsychological assessments that have been translated into various regional languages as well as culturally adapted to the Indian context. These include: Addenbrookes Cognitive Examination (ACE) (Version III and Version R), Mini-Mental State Examination (MMSE) and Montreal Cognitive Assessments (MoCA) (Porrselvi and Shankar, 2017).

Table 7.1 shows the Cognitive screening measures with Indian adaptions:

Source: (Porrselvi and Shankar, 2017)

References:

Indian Council of Medical Research (ICMR). 2021. INDIAN COUNCIL OF MEDICAL RESEARCH -NEURO COGNITIVE TOOLBOX (ICMR-NCTB). Available from: http://brandp.in/icmr/index.html

Porrselvi, A.P., Shankar, V., 2017. Status of Cognitive Testing of Adults in India. Ann. Indian Acad. Neurol. 20, 334–340. https://doi.org/10.4103/aian.AIAN_107_17

Prince, M. J., De Rodriguez, J. L., Noriega, L., Lopez, A., Acosta, D., Albanese, E., … & Uwakwa, R. (2008). The 10/66 Dementia Research Group’s fully operationalised DSM-IV dementia computerized diagnostic algorithm, compared with the 10/66 dementia algorithm and a clinician diagnosis: a population validation study. BMC public health, 8(1), 1-12. https://doi.org/10.1186/1471-2458-8-219

Families predominantly provide long-term care for persons with dementia at their homes (ARDSI, 2010). There is multidisciplinary care provided by few clinics located in tertiary referral hospitals. The team generally consists of specialists such as a neurologist or psychiatrist, psychologist, psychiatric social worker, speech therapist, occupational therapist and are often associated with NGO partners like ARDSI chapters, NMT, and Samvedna which further provide in-depth support.

For example, the Dr R. M. Verma Sub-speciality block at NIMHANS has 10 in-patient beds exclusive for persons with dementia, which are provided at subsidised rates. This speciality block provides counselling, cognitive stimulation and speech therapy for the persons living with dementia, and also provides family caregivers with dementia counselling and support.

References:

Alzheimer’s and Related Disorders Society of India. (2010). THE DEMENTIA INDIA REPORT 2010: Prevalence, impact, cost and services for dementia. New Delhi. Available from: https://ardsi.org/pdf/annual%20report.pdf

There are limited dedicated dementia day-care centres, respite care, and long-term care homes across the country situated mainly in urban locations or metropolitan cities. In 2010, there were about 6 residential care facilities, 10 day-care centres with medical attention and supervision, 6 domiciliary care services providing care at home, 100 memory clinics and 10 dementia help-lines across India (Alzheimer’s & Related Disorders Society of India (ARDSI), 2010). The numbers are gradually increasing due to an increase in awareness and greater need for dementia services (Kishore, 2019a).

Table 7.2 Dementia day-care centres in India

Source (Kishore, 2019a)

There are few other dementia daycares run by private and other organisations such as Nema Elder care (Gurgaon), Kriti Elder care (Gurgaon), Samarth (Mumbai), Varista (Mumbai), Dignity Dementia Day Care Centre (Chennai), Demcare – Centre for Active Aging (Chennai) and other which are not listed.

References:

Alzheimer’s and Related Disorders Society of India. (2010). THE DEMENTIA INDIA REPORT 2010: Prevalence, impact, cost and services for dementia. New Delhi. Available from: https://ardsi.org/pdf/annual%20report.pdf

Kishore, S. (2019a). Dementia Caregiver Resources across India | Dementia Care Notes. Available from: https://dementiacarenotes.in/resources/india/

Public primary care facilities provide referrals to secondary/tertiary facilities. There is no established referral network between primary care services/specialist services and long-term care services in the country due to the limited availability of the latter.

Not applicable.

Most dementia related services are financed through out-of-pocket payments (Bharat and Rao, 2013).

References:

Bharath, S., Sadanand, S., Kumar, K.J., Balachandar, R., Joshi, H., Varghese, M., 2017. Clinical and neuropsychological profile of persons with mild cognitive impairment, a hospital based study from a lower and middle income country. Asian J. Psychiatr. 30, 185–189. https://doi.org/10.1016/j.ajp.2017.10.007

Few families who can afford the few long-term care services available for dementia in India, provide this care (out-of-pocket care) through hiring paid carers or using day-care centres or residential facilities (ARDSI, 2010).

References:

Alzheimer’s and Related Disorders Society of India. (2010). THE DEMENTIA INDIA REPORT 2010: Prevalence, impact, cost and services for dementia. New Delhi. Available from: https://ardsi.org/pdf/annual%20report.pdf

Rao & Bharat (2013) conducted a study examining the cost of dementia care in India. The authors found that the annual household cost of dementia care ranged from INR 45,600 to INR 2,02,450 in urban areas and INR 20,300 and INR 66,025 in rural areas, with disease severity significantly influencing these costs. Medication, consultation, and hospitalisation were combined as medical costs and transportation, paid residential care or day care included as care, and remaining costs (informal caregiving and productivity loss of the person with dementia) were summarised under informal costs (Rao & Bharat, 2013). More than half of the total cost is attributed towards informal care, as per the study. Of the total costs, around two-third (60.3%) is spent on informal care, one-fourth (26.1%) on care related costs and the rest 13.6% is spent on medical costs (Rao & Bharat, 2013). The authors identified that with respect to disease severity, the greater the severity of the disease, the lower is the expenditure on medical costs and the greater is the expenditure on care related costs (Rao & Bharat, 2013).

References:

Rao, G., & Bharath, S. (2013). Cost of dementia care in India: Delusion or reality? Indian Journal of Public Health, 57(2), 71. https://doi.org/10.4103/0019-557X.114986

Dementia organisations like NMT and private attender agencies like Portea, Life Circle Elder Care and more, run few home-based care programs primarily in urban areas where paid attenders are available to support home-based care.

Few studies have also examined the effectiveness of community-based interventions for people with dementia and their families. Dias and colleagues (2008) conducted randomised controlled trials to examine the impact of a community-based intervention consisting of home care advisors on caregivers of people with dementia in Goa, India. The authors found that this intervention led to improvement in caregiver mental health (Dias et al., 2008).

References:

Dias, A., Dewey, M. E., D’Souza, J., Dhume, R., Motghare, D. D., Shaji, K. S., …& Patel, V. (2008). The Effectiveness of a Home Care Program for Supporting Caregivers of Persons with Dementia in Developing Countries: A Randomised Controlled Trial from Goa, India. PLoS ONE, 3(6), e2333. https://doi.org/10.1371/journal.pone.0002333

Generally, a GP refers the person to a specialist (neurologist/psychiatrist).

Specialists are equipped to assess people with dementia that are exhibiting psychological symptoms and challenging behaviours. The Clinical Practice Guidelines published by the Indian Psychiatric Society (IPS) (initially in 2007 and revised in 2018) contains a protocol for identification and management of challenging behaviours through pharmacological and non-pharmacological interventions (Shaji et al., 2018). For example, it provides an overview of the drugs recommended for management of behavioural and psychological symptoms of dementia (Shaji et al., 2018).

Non-pharmacological interventions for behavioural and psychological symptoms of dementia have been identified as a key intervention in dementia care. It is recommended for psychological interventions to be explored first before administering pharmacological therapies (Shaji et al., 2018). These psychological interventions have been found to work best when individually tailored to the patient (person-centred care) (Shaji et al., 2018). Cognitive stimulation programmes are beneficial in improving and maintaining the functionality for Activities of Daily Living (ADL). Other interventions like reality orientation and reminiscence therapy are also recommended (Shaji et al., 2018).

References:

Shaji, K.S., Sivakumar, P.T., Rao, G.P., Paul, N., (2018). Clinical Practice Guidelines for Management of Dementia. Indian J. Psychiatry 60, S312–S328. https://doi.org/10.4103/0019-5545.224472

There are a few dementia activities centres and day-care centres in the country that provide cognitive stimulation and support functional rehabilitation for people with dementia.

Dementia organisations like NMT and private attender agencies like Portea, Life Circle Elder Care and more, run home-based care programs primarily in urban areas where paid attenders are available to support home-based care. There are also a few day-care services offered by organisations including ARDSI.

Less than 1% of patients have access to palliative care in India and existing services are predominantly available for persons living with cancer (Rajagopal et al., 2015). The state of Kerala is an exception with a large community-based model for palliative care (Kumar, 2007).

Recently, the Ayushman Bharat-Health and Wellness Centres are working on expanding the range of care services provided at a primary level including elderly and palliative care services which are relevant to persons with dementia (MoHFW, 2019).

References:

Kumar S. K. (2007). Kerala, India: a regional community-based palliative care model. Journal of pain and symptom management, 33(5), 623–627. https://doi.org/10.1016/j.jpainsymman.2007.02.005

Ministry of Health and Family Welfare (2019). Ayushman Bharat: Health and Wellness Centre.

Rajagopal, M. R. (2015). The current status of palliative care in India. Cancer Control, 22, 57-62. Available from: http://www.cancercontrol.info/wp-content/uploads/2015/07/57-62-MR-Rajagopal-.pdf

The Rights of Persons with Disabilities Act 2016, states that a disability assessment can be conducted to assess cognitive impairment for people with chronic neurological disorders. Based upon the results of this assessment, a nominal state pension can be received from the government (Government of India, 2016). Other schemes are listed in Part 9.

References:

Government of India. (2016). The Rights Of Persons With Disabilities Act. THE GAZETTE OF INDIA EXTRAORDINARY PART II.

According to the Clinical Practice Guidelines (CPGs) for the management of dementia, families providing care in the community are advised to access support from community health workers like Accredited Social Health Activities (ASHAs)/volunteers of palliative care services or local chapters of organisations such as ARDSI (Shaji et al., 2018).

In addition, other dementia organisations like NMT and private attender agencies like Portea, Life Circle Elder Care and more, run few home-based care programs primarily in urban areas where paid attenders are available to support home-based care.

References:

Shaji, K.S., Sivakumar, P.T., Rao, G.P., Paul, N., (2018). Clinical Practice Guidelines for Management of Dementia. Indian J. Psychiatry 60, S312–S328. https://doi.org/10.4103/0019-5545.224472

Yes, by both.

Not applicable.

Not applicable.

Not applicable.

Pharmacological interventions available for persons with dementia to address BPSD symptoms are described in the Clinical Practice Guidelines by Indian Psychiatric Society (Shaji et al., 2018). Non-pharmacological interventions for people with dementia are person-centred and often also involve caregiver participation (Shaji et al., 2018). Some of the interventions available to address behavioural and psychological symptoms associated with dementia include music and dance therapy, multisensory stimulation, reminiscence therapy, etc. (Shaji et al., 2018). The availability of these interventions varies across regions.

References:

Shaji, K.S., Sivakumar, P.T., Rao, G.P., Paul, N., (2018). Clinical Practice Guidelines for Management of Dementia. Indian J. Psychiatry 60, S312–S328. https://doi.org/10.4103/0019-5545.224472

There are few domiciliary care services available, which are provided by non-governmental organisations (ARDSI, 2010). As part of these services, volunteers or social workers visit families at their homes, providing support to caregivers in the form of counselling, guidance, and sometimes also aid persons with dementia to carry out activities of daily living such as grooming or bathing (ARDSI, 2010). For example, dementia organisations like NMT and private attender agencies like Portea, Life Circle Elder Care and more, run few home-based care programs primarily in urban areas where paid attenders are available to support home-based care.

References:

Alzheimer’s and Related Disorders Society of India. (2010). THE DEMENTIA INDIA REPORT 2010: Prevalence, impact, cost and services for dementia. New Delhi. Available from: https://ardsi.org/pdf/annual%20report.pdf

Yes. The Alzheimer’s and Related Disorders Society of India (ARDSI) was founded in 1992. It is a registered non-profit volunteer organisation dedicated to dementia care, support, awareness and anti-stigma campaigns, training, and research. Through various platforms, ARDSI has engaged in developing dementia care homes, day care centres and memory clinics as well as conducting training programmes for family caregivers, medical health workers, and social workers. The national organisation has 22 chapters in various cities across the country. ARDSI is the first Afro-Asian organisation to receive full membership to Alzheimer’s Disease International (ADI), UK. ARDSI has been registered under the Travancore Cochin Literary, Scientific and Charitable Societies Registration act XII, 1955 (Reg. No. S.N. ER 243/93) in 1993.

The Nightingales Medical Trust (NMT) is another non-profit organization that was established in 1998, it is based in Bangalore and is working to support persons with dementia and senior citizens through several programmes and services.

The ARDSI head office is based in Delhi and the sub-national office is located in the state of Kerala.

While ARDSI does have paid staff, most of the work carried out by the organisation is by volunteers.

All ARDSI chapters run in their own capacity following basic guidelines from the head office. The organisation carries out dementia awareness and anti-stigma campaigns throughout the year. Particularly during World Alzheimer’s month in September, the different chapters conduct several public events. The ARDSI also provides a few dementia-related services to support caregivers and persons with dementia. Some of the chapters run day-care/activity centres for people with dementia as a social service for minimal charges (charges are only to cover operational costs). The organisation also conducts dementia research and holds an annual conference.

Table 7.3 List of activity centres/day cares/ institutions run by each of the ARDSI chapters.

Generally, the activities of the ARDSI are not funded by the government. However, the National Institute of Social Defence (NISD) under the Ministry of Social Justice and Empowerment, provided funding to the ARDSI to train caregivers of people with dementia; however, some of the courses have been discontinued.

ARDSI developed the Dementia India Report in 2010 (ARDSI, 2010), the Dementia India Strategy report in 2018 (ARDSI, 2018), and Dementia in India Report in 2020 (Kumar CST et al, 2019). The 2018 Dementia India Strategy Report was submitted to the Ministry of Health and Family Welfare (MoHFW) (ARDSI, 2018).

References:

Alzheimer’s and Related Disorders Society of India. (2010). THE DEMENTIA INDIA REPORT 2010: Prevalence, impact, cost and services for dementia. New Delhi. Available from: https://ardsi.org/pdf/annual%20report.pdf

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

Kumar CTS, Shaji KS, Varghese M, Nair MKC (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

Most service providers are from cities or urban areas. The Ellen Thoburn Cowen Memorial (ETCM) Hospital, the Nightingales Dementia Care Centre located in Kolar, are examples of centres in smaller towns and areas on the outskirts of Bangalore. The Nightingales Dementia Care Centre also offers tele-medicine based care. Another rural setup is based in Shantiniketan, near the city of Kolkata, which is run by the ARDSI Kolkata chapter.

Full-time dementia day-care and residential care homes do charge for their services including organisations like ARDSI and NMT. Although subsidised rates are offered to lower-socioeconomic groups.

Not applicable.

As of January 2015, there were 1312 neurologists that were members of the Indian Academy of Neurology and 2500 neurologists that were members of the Neurological Society of India (Ganapathy, 2015).

References:

Ganapathy, K. (2015). Distribution of neurologists and neurosurgeons in India and its relevance to the adoption of telemedicine. Neurology India, 63(2), 142. https://doi.org/10.4103/0028-3886.156274

Not applicable.

Dementia is not emphasised in undergraduate medical curriculum.

Yes (neurologists and psychiatrists).

Not applicable.

Not applicable.

Not applicable.

Not applicable.

Not applicable.

Not applicable.

Not applicable.

The Ministry of Social Justice and Empowerment (MSJE) provides financial aid to institutions at regional centres to train caregivers. Some of the non-governmental institutions that offer such training programmes in long-term care are the Nightingale Medical Trust in Bangalore, Alzheimer’s and Related Disorders Society of India (ARDSI), and Pallium India. Moreover, ARDSI offers training particularly for dementia caregivers.

Not applicable.

Yes, there are a few residential care centres that are run by non-governmental and private organisations (table 7.5).

Yes, hospice care is available, but is not covered under any medical insurance, and it is mostly for cancer patients. There are about 138 organisations across the country providing hospice and palliative care services, and these are concentrated in large cities (Khosla et al., 2012). The state of Kerala is an exception, as it has 60 hospice units for a population of more than 12 million (Kumar,  2007).

References:

Khosla, D., Patel, F. D., & Sharma, S. C. (2012). Palliative care in India: current progress and future needs. Indian Journal of Palliative Care, 18(3), 149–154.

Kumar S. K. (2007). Kerala, India: a regional community-based palliative care model. Journal of pain and symptom management, 33(5), 623–627. https://doi.org/10.1016/j.jpainsymman.2007.02.005

Yes, there are few adult day-care centres across the country (table 7.2).

Not applicable.

There are few facilities available across the country, which are run by public, private, and NGO sectors. However, the total number is unknown. Please refer to Table 7.5.

Table 7.5 provides an overview of 41 long term care centres for dementia in India (some centres are not listed).

Source (Kishore, 2019a)

References:

Kishore, S. (2019a). Dementia Caregiver Resources across India | Dementia Care Notes. Available from: https://dementiacarenotes.in/resources/india/

Not applicable.

The Dr R. M. Verma Sub-speciality block at NIMHANS has 10 in-patient beds exclusive for persons with dementia, which are provided at subsidised rates. Other private hospitals such as ASHA hospitals Hyderabad also has some dedicated beds for persons with dementia.

Yes, but the number is unknown.

Some hospitals do track dementia related admissions. Only a few tertiary referral hospitals maintain dementia registries that record and report on the dementia patients that have been seen in these specialist memory/cognitive disorders clinics. These centres typically conduct scientific studies that report on clinical profiles and risk factors of dementia or specific subtypes of dementia (Alladi et al., 2011; Alladi et al., 2014; Bharath et al., 2017; Nair et al., 2012; Tripathi et al., 2012). However, these registries do not periodically report the numbers of persons with dementia evaluated in the clinics.

References:

Alladi, S., Mekala, S., Chadalawada, S.K., Jala, S., Mridula, R., Kaul, S., 2011. Subtypes of Dementia: A Study from a Memory Clinic in India. Dement. Geriatr. Cogn. Disord. 32, 32–38. https://doi.org/10.1159/000329862

Alladi, S., Shailaja, M., Mridula, K.R., Haritha, C.A., Kavitha, N., Khan, S.A., Divyaraj, G., Kaul, S., 2014. Mild Cognitive Impairment: Clinical and Imaging Profile in a Memory Clinic Setting in India. Dement. Geriatr. Cogn. Disord. 37, 113–124. https://doi.org/10.1159/000354955

Bharath, S., Sadanand, S., Kumar, K.J., Balachandar, R., Joshi, H., Varghese, M., 2017. Clinical and neuropsychological profile of persons with mild cognitive impairment, a hospital based study from a lower and middle income country. Asian J. Psychiatr. 30, 185–189. https://doi.org/10.1016/j.ajp.2017.10.007

Nair, G., Van Dyk, K., Shah, U., Purohit, D.P., Pinto, C., Shah, A.B., Grossman, H., Perl, D., Ganwir, V., Shanker, S., Sano, M., 2012. Characterizing Cognitive Deficits and Dementia in an Aging Urban Population in India. Int. J. Alzheimers. Dis. 2012, 1–8. https://doi.org/10.1155/2012/673849

Tripathi, M., Vibha, D., Gupta, P., Bhatia, R., Srivastava, M.V.P., Vivekanandhan, S., Bhushan Singh, M., Prasad, K., Dergalust, S., Mendez, M.F. (2012). Risk factors of dementia in North India: a case–control study. Aging Ment. Health 16, 228–235. https://doi.org/10.1080/13607863.2011.583632

Not applicable (see table 7.5).

Not applicable.

Not applicable.

Yes.

Clinical Practice Guidelines (CPGs) for management of dementia published by the Indian Psychiatric Society (Shaji. et al., 2018) lists the following approved anti-dementia drugs (Cholinesterase Inhibitors):

• Donepezil
• Rivastigmine
• Galantamine
• Rivastigmine Transdermal Patch
• Donepezil Extended Release
• NMDA Antagonist Memantine.

References:

Shaji, K.S., Sivakumar, P.T., Rao, G.P., Paul, N., (2018). Clinical Practice Guidelines for Management of Dementia. Indian J. Psychiatry 60, S312–S328. https://doi.org/10.4103/0019-5545.224472

There are multiple generics available for the treatment of dementia.

Table 7.11 Generic brands leading in India of the recommended anti-dementia drugs

Source: (Medindia, 2019)

References:

Medindia, 2019. Medindia – Trusted Information on Health &amp; Wellness Available from: www.medindia.net/index.asp

Not applicable.

Not applicable.

Not applicable.

The Indian Department of Pharmaceuticals launched the Jan Aushadhi Scheme (JAS) (Public Medicine Scheme) in 2015 as a direct market intervention to make generic medicine more affordable and accessible to the general public in all Indian states (IES, 2015).

References:

IES, 2015. Jan Aushadhi Scheme – Arthapedia. Available from: http://www.arthapedia.in/index.php?title=Jan_Aushadhi_Scheme

Some of the dementia centres across the country follow non-pharmacological interventions such as cognitive stimulation therapy for people with dementia (ARDSI, 2010). DEMCARES by SCARF Chennai runs The Centre for Active Ageing (CAA) which provides psychosocial non-pharmacological interventions (DEMCARES, 2019).

Cognitive stimulation therapy, reality orientation, and reminiscence therapy are some of the commonly used non-pharmacological interventions used to reduce the behavioural, cognitive, and emotional symptoms of dementia which have proven to be effective (Tripathi and Tiwari 2009; Shaji et al., 2018).

References:

Alzheimer’s and Related Disorders Society of India. (2010). THE DEMENTIA INDIA REPORT 2010: Prevalence, impact, cost and services for dementia. New Delhi. Available from: https://ardsi.org/pdf/annual%20report.pdf

DEMCARES. (2019). Centre for Active Aging. Available from: https://dementia.scarfindia.org/centre-for-active-aging/

Shaji, K.S., Sivakumar, P.T., Rao, G.P., Paul, N., (2018). Clinical Practice Guidelines for Management of Dementia. Indian J. Psychiatry 60, S312–S328. https://doi.org/10.4103/0019-5545.224472

Tripathi, R.K., Tiwari, S.C., (2009). Psychotherapeutic Approaches in the Management of Elderlies with Dementia: An Overview, DELHI PSYCHIATRY JOURNAL.

There are GPS tracking devices, such as the GPS SmartSole, which is a sole insert for shoes that uses GPS and cellular technology to provide regular data updates (every 10 minutes) on the user’s location (Kim et al., 2017). Likewise, SafeWander is a bed exit alarm sensor that detects changes in body position and alerts caregivers if the person with dementia is about to leave his or her bed (Kim et al., 2017). Similar assistive technologies are available for dementia care on the Indian market. The devices are generally expensive and require maintenance and administration by family members/caregivers.

Nevertheless, technology plays a vital role in dementia care. The portal for old age solutions is a part of the Technology Initiative for Disabled and Elderly, an initiative of the Ministry of Science and Technology and created by All India Institute of Medical Sciences (AIIMS), Delhi (Portal on Technology Initiative for Disabled and Elderly, n.d.). This portal provides significant information on various aspects such as health, nutritional requirements, recreation, environment, networking and assistive devices for the ageing (Portal on Technology Initiative for Disabled and Elderly, n.d.). In addition, DemClinic launched by Nightingales Medical Trust (NMT) in association with ARDSI Bangalore, is the first of its kind offering a telemedicine expert-led cognitive assessment platform for the elderly to increase access to dementia screening, diagnosis, and care (Nightingales Medical Trust, n.d.). Also, the DemLink App by NMT aims to educate families of loved ones with dementia and provides access to care and support via a mobile app (Nightingales Medical Trust, n.d.). Furthermore, caregiver support is provided through platforms such as WhatsApp. The ARDSI Hyderabad ZBCHA WhatsApp group is one such example.

References:

Kim, S., B, Toloui, B.O., Jain, S. (2017). Enhancing Dementia Care Through Digital Health. Available from: https://www.ajmc.com/journals/ajac/2017/2017-vol5-n4/enhancing-dementia-care-through-digital-health

NIGHTINGALES MEDICAL TRUST. (n.d.). DemClinic and DemLink. Available from: https://nightingaleseldercare.com/demclinic.html

Portal on Technology Initiative for Disabled and Elderly, (n.d.). Old Age Solutions. Available from: https://www.oldagesolutions.org/category/old-age-solutions-en/

Table 7.12. Cost per dose of generics as per the Clinical practice guideline management for dementia

Source: (Medindia, 2019; Shaji et al., 2018)

References:

Medindia, 2019. Medindia – Trusted Information on Health &amp; Wellness Available from: www.medindia.net/index.asp

Shaji, K.S., Sivakumar, P.T., Rao, G.P., Paul, N., (2018). Clinical Practice Guidelines for Management of Dementia. Indian J. Psychiatry 60, S312–S328. https://doi.org/10.4103/0019-5545.224472

Family remains the main provider of dementia care in India (ARDSI, 2010). Almost all persons with dementia are cared informally by a family member (ARDSI, 2010). In some cases, domestic helpers may be informally employed to support care provision roles.

References:

Alzheimer’s and Related Disorders Society of India. (2010). THE DEMENTIA INDIA REPORT 2010: Prevalence, impact, cost and services for dementia. New Dehli. Retrieved from: https://ardsi.org/pdf/annual%20report.pdf

There is no specific information related to employment condition and safeguarding concerns of informal workers for dementia in India.

The below refers to family caregivers/unpaid caregivers as informal caregivers:

Studies have reported informal caregivers to be primarily women (Brinda et al., 2014; Prince & The 10/66 Dementia Research Group, 2004; Shaji et al., 2003). A study examining family members’ experiences with caregiving of people with dementia in Karnataka (Narayan et al., 2015) found that two-thirds of the caregivers interviewed to be women and the mean age of all caregivers was reported as 51.3 years. With respect to average time spent on care, a study conducted in Tamil Nadu reported that caregivers of older adults spent an average of 38.6 hours per week on care (Brinda et al., 2014).

References:

Brinda, E. M., Rajkumar, A. P., Enemark, U., Attermann, J., & Jacob, K. (2014). Cost and burdenof informal caregiving of dependent older people in a rural Indian community. BMC Health Services Research, 14(1), 207. https://doi.org/10.1186/1472-6963-14-207

Narayan, S. M., Varghese, M., Hepburn, K., Lewis, M., Paul, I., & Bhimani, R. (2015). Caregiving experiences of family members of persons with dementia in south India. American Journal of Alzheimer’s Disease & Other Dementias®, 30(5), 508-516. https://doi.org/10.1177/1533317514567125

Prince, M., & 10/66 Dementia Research Group. (2004). Care arrangements for people with dementia in developing countries. International Journal of Geriatric Psychiatry, 19(2), 170–177. https://doi.org/10.1002/gps.1046

Shaji, K. S., Smitha, K., Lal, K. P., Prince, M. J. (2003). Caregivers of people with Alzheimer’s disease: a qualitative study from the Indian 10/66 Dementia Research Network. International Journal of Geriatric Psychiatry, 18(1), 1–6.

The below refers to family caregivers/unpaid caregivers as informal caregivers:

Urbanisation and search for better economic opportunities have driven migration. Das and colleagues (2012) discuss the impact of rapid urbanisation on people with dementia in Kerala. The authors argue that urbanisation has caused earning members of families to migrate for better economic opportunities. The authors suggest that, as a result, there are fewer family members to provide care, which leaves many people with dementia with little care options.

References:

Das, S., Ghosal, M., & Pal, S. (2012). Dementia: Indian scenario. Neurology India, 60(6), 618. https://doi.org/10.4103/0028-3886.105197

This section to be updated soon.

This section to be updated soon.

Not applicable.

Not applicable.

Although not directed specifically towards unpaid carers, there are several training and education programmes conducted by the ARDSI focused on old age/geriatric care (Alzheimer’s and Related Disorders Society of India (ARDSI), 2010). These are described in Table 1.

Table 1 provides an overview of ARDSI Training and Education Programmes.

Source: (ARDSI, 2010)

References:

Alzheimer’s and Related Disorders Society of India. (2010). THE DEMENTIA INDIA REPORT 2010: Prevalence, impact, cost and services for dementia. New Dehli. Retrieved from https://ardsi.org/pdf/annual%20report.pdf

The number of psychosocial support services available for carers in India is limited. In 2010, there were approximately 100 memory clinics in the country that were reported to offer assessment information and advice (ARDSI, 2010). Six domiciliary care services and 10 dementia helplines exclusive to persons with dementia were also reported in 2010 (ARDSI, 2010). These numbers are gradually increasing due to an increase in awareness and greater need for dementia services. Organisations like ARDSI, Nightingales Medical Trust and Caregiver SAATHI also provide psychosocial support through frequent caregiver support meetings and telephone support with counsellors and dementia experts.

References:

Alzheimer’s and Related Disorders Society of India. (2010). THE DEMENTIA INDIA REPORT 2010: Prevalence, impact, cost and services for dementia. New Dehli. Retrieved from https://ardsi.org/pdf/annual%20report.pdf

There are a few respite care facilities that exist in the form of day care centres and residential facilities. There were 6 residential facilities, 4 in Kerala, 1 in Karnataka and 1 in Maharashtra (ARDSI, 2010) as of 2010. There were also 10 day-care centres at which trained professionals provide care to people with dementia during the day (ARDSI, 2010). The number of these services have increased marginally over the years (Refer to Table 7.4 and Table 7.5 in Part 7).

References:

Alzheimer’s and Related Disorders Society of India. (2010). THE DEMENTIA INDIA REPORT 2010: Prevalence, impact, cost and services for dementia. New Dehli. Retrieved from https://ardsi.org/pdf/annual%20report.pdf

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 elderly people 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. Available from: https://www.indiacode.nic.in/bitstream/123456789/6831/1/maintenance_and_welfare_of_parents_and_senior_citizens_act.pdf

Unpaid carers are those who provide care on a regular basis (i.e., family members) and are often closely related to the person with dementia. Spouses, sons, daughters, daughters-in-law and parents are the usual caregivers (informal caregivers) (Brodaty and Donkin, 2009). In traditional Indian culture, young adults of child-bearing age, earn and save for their children’s future. The assets gained are utilised for their children’s education, marriage expenses and subsequent costs associated. In this process they often fail to save for their old age. However, it is understood that their children will take care of them as they age. According to Gupta (2009), this understanding arises from the cultural concept of “dharma” (duty) (pp.1042), which emphasises upon this “moral duty” (pp.1042) of adult children to provide care and support for their elderly parents and in-laws. Traditionally, the son of the house marries and brings in a daughter-in-law, who will take care of the aging parents. In the event of frailty and ill health associated with old age, it is this social system that provides a background for age related decline and appropriate care arrangements. In this, she will be assisted by the extended family who will take turns to provide instrumental support, often in the form of assistance for hospital visits, respite for the primary caregiver and so on. This system has been the foundation of dementia care in India for many decades. However, demographic and economic changes are reshaping this familial system of care. In the absence of institutional support for the elderly, many families are struggling to maintain traditional caregiving roles (Srivastava et al., 2016).

References:

Brodaty, H., & Donkin, M. (2009). Family caregivers of people with dementia. Dialogues inClinical Neuroscience, 11(2), 217–228. Retrieved from http://www.ncbi.nlm.nih.gov/pubmed/19585957

Gupta, R. (2009). Systems Perspective: Understanding Care Giving of the Elderly in India. Health Care for Women International, 30(12), 1040–1054. https://doi.org/10.1080/07399330903199334

Srivastava, G., Tripathi, R. K., Tiwari, S. C., Singh, B., & Tripathi, S. M. (2016). Caregiver Burden and Quality of Life of Key Caregivers of Patients with Dementia. Indian Journal of Psychological Medicine, 38(2), 133–136. https://doi.org/10.4103/0253-7176.178779

Studies have examined the impact of unpaid care on the mental health of caregivers in India. For instance, a case control study conducted in Northern India examined the perceived stress experienced by caregivers of people with Alzheimer’s disease type dementia (Anand et al., 2016). The study reported that when compared to caregivers of individuals with chronic illness, caregivers of individuals with Alzheimer’s disease type dementia had higher amounts of perceived stress. Similarly, Pattanayak and colleagues (2010) also examined the experiences of carers of people with Alzheimer’s type dementia. The authors found that caregivers experienced a moderate level of burden, with female caregivers in particular perceiving higher levels of burden with respect to their physical and mental health. Another study conducted in rural Tamil Nadu reported prevalence of depression among informal caregivers of older adults as 10.6% (Brinda et al., 2014). Behavioural issues (Jathana, Latha and Bhandary, 2010; Prince et al., 2012; Shaji et al., 2009; Shaji et al., 2003), time/duration spent on caregiving (Brinda et al., 2014; Jathana, Latha and Bhandary, 2011; Prince et al., 2012) and functional disability (Brinda et al., 2014; Sinha et al., 2017) were commonly found to be associated with caregiver strain/burden across studies in India.

References:

Anand, K., Dhikav, V., Sachdeva, A., & Mishra, P. (2016). Perceived caregiver stress in Alzheimer′s disease and mild cognitive impairment: A case control study. Annals of Indian Academy of Neurology, 19(1), 58. https://doi.org/10.4103/0972-2327.167695

Brinda, E. M., Rajkumar, A. P., Enemark, U., Attermann, J., & Jacob, K. (2014). Cost and burdenof informal caregiving of dependent older people in a rural Indian community. BMC Health Services Research, 14(1), 207. https://doi.org/10.1186/1472-6963-14-207

Jathanna, R. P., KS, L., & Bhandary, P. V. (2011). Burden and coping in informal caregivers of persons with dementia: a cross sectional study. Online Journal of Health and Allied Sciences, 9(4).

Pattanayak, R. D., Jena, R., Tripathi, M., & Khandelwal, S. K. (2010). Assessment of burden in caregivers of Alzheimer’s disease from India. Asian Journal of Psychiatry, 3(3), 112–116. https://doi.org/10.1016/j.ajp.2010.06.002

Prince, M., Brodaty, H., Uwakwe, R., Acosta, D., Ferri, C. P., Guerra, M., … & Liu, Z. (2012). Strain and its correlates among carers of people with dementia in low-income and middle-income countries. A 10/66 Dementia Research Group population-based survey. International Journal of Geriatric Psychiatry, 27(7), 670–682. https://doi.org/10.1002/gps.2727

Shaji, K.S., George, R.K., Prince, M.J., Jacob, K.S., (2009). Behavioral symptoms and caregiver burden in dementia. Indian J. Psychiatry 51, 45–9. https://doi.org/10.4103/0019-5545.44905

Shaji, K. S., Smitha, K., Lal, K. P., Prince, M. J. (2003). Caregivers of people with Alzheimer’s disease: a qualitative study from the Indian 10/66 Dementia Research Network. International Journal of Geriatric Psychiatry, 18(1), 1–6.

Sinha, P., Desai, N. G., Prakash, O., Kushwaha, S., & Tripathi, C. B. (2017). Caregiver burden in Alzheimer-type dementia and psychosis: A comparative study from India. Asian journal of psychiatry, 26, 86-91.

Prince and colleagues (2012) conducted a population-based survey across rural and urban areas in Latin America, China, and India in order to examine the association between strain and caregiving for people with dementia. The study found that caregiver strain was higher among those caregivers who reduced their working hours to provide care in all sites with the exception of urban India. However, the findings were statistically significant in only six of the total eleven locations (across Latin America, China, and India) that the study was conducted.

References:

Prince, M., Brodaty, H., Uwakwe, R., Acosta, D., Ferri, C. P., Guerra, M., … & Liu, Z. (2012). Strain and its correlates among carers of people with dementia in low-income and middle-income countries. A 10/66 Dementia Research Group population-based survey. International Journal of Geriatric Psychiatry, 27(7), 670–682. https://doi.org/10.1002/gps.2727

This section to be updated soon.

There are currently no employment policies in place to accommodate carer needs. Caregivers often have to cut back on paid work in order to meet care demands (Prince & 10/66 Dementia Research Group, 2004) and are usually not compensated for this.

References:

Prince, M., & 10/66 Dementia Research Group. (2004). Care arrangements for people with dementia in developing countries. International Journal of Geriatric Psychiatry, 19(2), 170–177. https://doi.org/10.1002/gps.1046

There is limited evidence examining the impact unpaid care has on both the physical and mental health of caregivers. Srivastava and colleagues (2016) examined the quality of life (QOL) and burden experienced by primary caregivers of people with dementia in Lucknow, Uttar Pradesh. The authors report that caregiver burden ranges from mild to moderate, but this burden affects the psychological, physical, social, and environmental QOL of caregivers. Similarly, Jathana and colleagues (2011) found caregiving to be associated with poor physical and mental QOL in a study conducted in India.

References:

Jathanna, R. P., KS, L., & Bhandary, P. V. (2011). Burden and coping in informal caregivers of persons with dementia: a cross sectional study. Online Journal of Health and Allied Sciences, 9(4).

Srivastava, G., Tripathi, R. K., Tiwari, S. C., Singh, B., & Tripathi, S. M. (2016). Caregiver Burden and Quality of Life of Key Caregivers of Patients with Dementia. Indian Journal of Psychological Medicine, 38(2), 133–136. https://doi.org/10.4103/0253-7176.178779

Families can predominantly access psychosocial support from non-governmental organizations (e.g., ARDSI, NMT, Caregiver SAATHI etc).

Yes, please refer to part 7.

There are no social protection mechanisms that are solely dedicated to persons with dementia, but there are recognised schemes for persons with disabilities and senior citizens.

The implementation of the Right of Persons with Disabilities Act (2016) is carried out largely through schemes run by the Department of Empowerment of Persons with Disabilities (DPED), Ministry of Social Justice and Empowerment (MSJE). Two of the major schemes that influence the lives of persons with disabilities living in rural areas are summarised in Table 1 (Gupta, Witte and Meershoek, 2021). However, the implementation of these schemes has been found to be low in rural areas (Gupta, Witte and Meershoek, 2021).

Table 1. Overview of Few Major Disability Schemes

Source: (Gupta, Witte and Meershoek, 2021).

Furthermore, the National Social Assistance Programme (NSAP) under the Indira Gandhi National Disability Pension Scheme provides pension to persons aged 18 and above with a disability level of 80% an amount of Rs 300 per month (Vikaspedia, n.d.-c; Ministry of Rural Development, 2014). Persons above the age of 80 receive Rs 500 per month (Vikaspedia, n.d.-c; Ministry of Rural Development, 2014).

In addition, the Mahatma Gandhi National Rural Employment Guarantee Act (2005) (NREGA) mentioned in Part 1 Section IV on Social Protection is also applicable to persons with disabilities residing in rural areas.

Old age grants, pension or assistance schemes

These are schemes under the National Social Assistance Programme (NSAP), which can be availed if the applicant falls under the BPL category as per the Government of India (Vikaspedia, n.d.-c; Ministry of Rural Development, 2014).

Indira Gandhi National Old Age Pension Scheme (IGNOAPS): Provides senior citizens over the age of 60 with no other sources of income and who fall below the poverty line with a monthly pension of Rs 200 (60+ years of age) and 500 (80+ years of age) (Vikaspedia, n.d.-c; Ministry of Rural Development, 2014).

Indira Gandhi National Widow Pension Scheme (IGNWPS): Provides the widowed, living below the poverty line, with an amount of Rs 300 per month (Vikaspedia, n.d.-c; Ministry of Rural Development, 2014). Persons above the age of 80 will receive Rs 500 per month (Vikaspedia, n.d.-c; Ministry of Rural Development, 2014).

National Family Benefit Scheme (NFBS): Provides a lumpsump of Rs 20,000 to a household in which the main breadwinner has passed away (Vikaspedia, n.d.-c; Ministry of Rural Development, 2014).

Annapurna scheme: Provides Rs 10kg of food grains per month free of cost to senior citizens living below the poverty line that are nor receiving pension under IGNOAPS (Vikaspedia, n.d.-c; Ministry of Rural Development, 2014).

The amount received under the pension schemes vary across states as state governments are urged to contribute at least an equal amount to the central government amounts mentioned above (Ministry of Rural Development, 2014).

References:

Gupta, S., de Witte, L. P., & Meershoek, A. (2021). Dimensions of invisibility: insights into the daily realities of persons with disabilities living in rural communities in India. Disability &Society, 36(8), 1285-1307.

Ministry of Rural Development (2014). National Social Assistance Programme: Programme Guidelines. Ministry of Rural Development, Government of India. Available from: https://nsap.nic.in/Guidelines/nsap_guidelines_oct2014.pdf

Vikaspedia. (n.d.c). National Social Assistance Programme. Ministry of Electronics and Information Technology. Government of India. Available from: https://vikaspedia.in/social-welfare/rural-poverty-alleviation-1/schemes/national-social-assistance-programme#:~:text=National%20Family%20Benefit%20Scheme%20(NFBS)%20%3A%20Rs.,the%20family%20eligible%20for%20assistance

This section to be updated soon.

Not applicable.

No specific to dementia.

The important contributory schemes include the Employees’ State Insurance Scheme and the schemes run by the Employee Provident Fund Organization (EPFO) (e.g., Employee Provident Fund Scheme (EPFO), Employee Pension Scheme (EPS)). (Details on each scheme is available at: https://labour.gov.in/general-overview).

Senior citizens have a higher tax exemption limit in comparison to regular taxpayers (Vikaspedia, n.d.-a). In addition, the Income Tax Department also provides some tax deduction to individuals caring for relative with disability under Section 80DD (Department of  Revenue, 2019).

References:

Department of Revenue. (2019). Tax benefits due to life insurance policy, health Insurance policy and expenditure on medical treatment.

Vikaspedia (n.d.-a). Concessions and Facilities given to Senior Citizens. Government of India. Available from: https://vikaspedia.in/social-welfare/senior-citizens-welfare/concessions-and-facilities-given-to-senior-citizens

Not applicable.

While there are no discounted transportation fares for persons with dementia, a few state governments provide concessions to senior citizens using the state transport buses (Vikaspedia, n.d.-a). In addition, the Indian Railyways and airlines for domestic flights provide fare concessions to senior citizens as well (Vikaspedia, n.d.-a).

References:

Vikaspedia (n.d.-a). Concessions and Facilities given to Senior Citizens. Government of India. Available from: https://vikaspedia.in/social-welfare/senior-citizens-welfare/concessions-and-facilities-given-to-senior-citizens

Not applicable.

Food and public distribution: Under the Public Distribution System (TPDS), the Antyodaya Anna Yojana Scheme provides food grains at a highly subsidised price to families living below the poverty line (Department of Food and Public Distribution, n.d.; Vikaspedia, n.d.-a).

References:

Department of Food and Public Distribution. (n.d.). ANTYODAYA ANNA YOJANA (AAY) AAY. Government of India. Available from: https://dfpd.gov.in/pds-aay.htm

Vikaspedia (n.d.-a). Concessions and Facilities given to Senior Citizens. Government of India. Available from: https://vikaspedia.in/social-welfare/senior-citizens-welfare/concessions-and-facilities-given-to-senior-citizens

While there are no documents detailing this, three bodies of the Government of India (GOI) have dedicated funding towards research on dementia. The Indian Council of Medical Research (ICMR), Department of Biotechnology (DBT), and Department of Science and Technology (DST) under GOI have specific funding initiatives to conduct research in the field of dementia. The multi-centre Dementia Science Programme of the DBT is a major initiative of the Government to examine prevalence, incidence, and risk factors for dementia in India (Bhatt, 2020). The DST supports many projects in the field of cognitive science (including dementia) through the Cognitive Science Research Initiative (CSRI), which was initiated in 2008 (DST, 2022). The Indian Council of Medical Research has just completed a multicentric research project to develop and adapt a neurocognitive test battery to diagnose dementia in five Indian languages, for literates and illiterates (Iyer et al., 2020). These bodies of the government have funded several research studies on dementia over the last two decades, focusing mainly on basic biology, epidemiology, diagnosis, and brain imaging.

References:

Bhatt (2020). DBT’s multi-centric Dementia Science Programme. Vigyan Samachar. Available from: https://vigyanprasar.gov.in/wp-content/uploads/DBT%E2%80%99s-multi-centric-Dementia-Science-Programme-10apr20.pdf

Department of Science and Technology (2022). Cognitive Science Research Initiative (CSRI). Available from: https://dst.gov.in/cognitive-science-research-initiative-csri

Iyer, G. K., Paplikar, A., Alladi, S., Dutt, A., Sharma, M., Mekala, S., … & Ghosh, A. (2020). Standardising Dementia Diagnosis Across Linguistic and Educational Diversity: Study Design of the Indian Council of Medical Research-Neurocognitive Tool Box (ICMR-NCTB). Journal of the International Neuropsychological Society, 26(2), 172-186. https://doi.org/10.1017/S1355617719001127

Yes. Please refer to part 10.01.

No details are available.

Yes.

The Indian Council of Medical Research, Department of Science and Technology and Department of Biotechnology are bodies under the Government of India that provide opportunities for young scientists to pursue innovative research in dementia and cognitive science through research grants and fellowships. These bodies also provide a platform to organise conferences, symposia, training programmes and workshops for academic and research institutions and other professional bodies working in the field of dementia and cognitive science. Moreover, research institutes such as National Institute of Mental Health and Neurosciences (NIMHANS) offer post-doctoral fellowships for neurologists and geriatric psychiatrists to develop specialised skills in dementia research. The Cognitive Neurology subdivision of the Indian Academy of Neurologists conducts teaching courses in cognitive neurology (IAN, n.d.). Cross-national collaborative schemes of the Government of India such as the Commonwealth scheme, Fulbright-Nehru scholarship, DST-INSPIRE and Welcome DBT program offer short-term and long-term fellowship programs for researchers to train in institutions abroad in the area of dementia. The University of Stirling offers an MSc in Dementia Studies distance learning scholarship programme in India (University of Stirling, 2022).

References:

Indian Academy of Neurology (n.d.). Cognitive Neurology. Available from: https://www.ianindia.org/cognitive-neurology.php

University of Stirling (2022). MSc Dementia Studies (Online). Available from: https://www.stir.ac.uk/courses/pg-taught/dementia-studies/

There is no such information available specifically for persons with dementia. There is no national or state level dementia registries that monitor health care utilisation among persons with dementia as well. While certain tertiary hospitals have dementia registries, these hospital-based registries often exist only for the period of a research project and focus on specific areas of research interest.

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.

The treatment gap for dementia is estimated to be greater than 90% in the majority of India (Dias and Patel, 2009). Low levels of awareness and lack of adequate services to diagnose and manage dementia contribute to this treatment gap. After receiving a diagnosis, families have limited access to post-diagnostic support services. Service centres that provide long-term care support such as day care centres and residential care facilities are very few for persons with dementia in the country (Alzheimer’s and Related Disorders Society of India (ARDSI), 2010). Family remains the main provider of long-term care for dementia in India (ARDSI, 2010).

References:

Alzheimer’s and Related Disorders Society of India. (2010). THE DEMENTIA INDIA REPORT 2010: Prevalence, impact, cost and services for dementia. New Dehli. Retrieved from https://ardsi.org/pdf/annual%20report.pdf

Dias, A., & Patel, V. (2009). Closing the treatment gap for dementia in India. Indian Journal of Psychiatry, 51 Suppl 1, S93-7. Available from: http://www.ncbi.nlm.nih.gov/pubmed/21416026

Data on prevalence of dementia is available across some regions in India. The Global Burden of Disease study (India State-Level Disease Burden Initiative Neurological Disorders Collaborators, 2021) also provides an overall estimate along with state-wise prevalence of Alzheimer’s disease and other dementias in India. However, further evidence is needed on the determinants behind variations in dementia prevalence across the country (India State-Level Disease Burden Initiative Neurological Disorders Collaborators, 2021; Kumar et al., 2019). In addition, research on interventions to support caregivers in low-resource settings, identifying factors that may help facilitate reduction in informal caregiver burden is urgently needed (Kumar et al., 2019).

There is also a necessity for evidence on effectiveness of awareness raising interventions and campaigns across different demographic areas considering the large diversity in socioeconomic, cultural, and linguistic factors in India. Lastly, research on economic costs of dementia is limited and the development of such evidence can aid policymakers in better resource allocation towards services for persons with dementia in the country.

References:

India State-Level Disease Burden Initiative Neurological Disorders Collaborators (2021). The burden of neurological disorders across the states of India: the Global Burden of Disease Study 1990-2019. The Lancet. Global health, 9(8), e1129–e1144.

Kumar, C. S., George, S., & Kallivayalil, R. A. (2019). Towards a Dementia-Friendly India. Indian journal of psychological medicine, 41(5), 476–481. https://doi.org/10.4103/IJPSYM.IJPSYM_25_19