Report: The impact of the COVID-19 pandemic on people with dementia in India

By Jayeeta Rajagopalan1, Saadiya Hurzuk2 and Narendhar Ramasamy2

1 National Institute of Mental Health and Neurosciences (NIMHANS), STRiDE India.

2 Alzheimer’s and Related Disorders Society of India (ARDSI)STRiDE India.

On 30th January 2020, the first case of COVID-19 was confirmed in the state of Kerala in India. As of April 6th 2020, the Ministry of Health and Family Welfare (MoHFW) has identified 3851 active cases, 318 cured cases and 111 deaths in India. The MoHFW has revealed that from the positive cases, 42% are between 21-40 years of age, 33% are between 41-60 years of age, 17% are over the age of 60 and 9% are between 0-20 years of age (Sharma, 2020). In response to the rising number of cases, the Government of India (GoI) has initiated several measures to reduce the burden and impact of COVID-19 infection in India. These measures include widespread testing, webinars to train physicians on COVID-19, a digital app to keep the general public informed, video training on ventilator support for healthcare professionals and a nationwide lockdown (from March 24th 2020 to April 14th 2020) to promote social distancing.

Source:

https://economictimes.indiatimes.com/news/politics-and-nation/coronavirus-crisis-heres-total-number-of-confirmed-cases-in-india-as-per-health-ministry/articleshow/74589499.cms

https://www.livemint.com/news/india/covid-19-going-against-trend-most-patients-in-india-are-millennials-11586000044825.html

Social distancing has been identified as critical in preventing the spread of the virus and in turn protecting vulnerable populations such as older people who have a higher risk of mortality from COVID-19 infection. In India, older people account for 8.6% (104 million) of the total population (Borah et al., 2016). The number of people living with dementia in India is estimated to be 5.29 million, as per projections for 2020 by the Alzheimer’s and Related Disorders Society of India (ARDSI, 2010). The impact of the COVID-19 pandemic on older people and people living with dementia is of significant concern to the government, healthcare professionals and dementia support organizations in the country.

Source:

https://www.who.int/emergencies/diseases/novel-coronavirus-2019/advice-for-public

https://www.indiatoday.in/coronavirus-outbreak/story/coronavirus-in-india-how-to-protect-elderly-people-from-covid-19-1657778-2020-03-20

https://www.mohfw.gov.in/pdf/AdvisoryforElderlyPopulation.pdf

Persons with dementia are more vulnerable to complications of COVID-19 infection due to comorbidities and furthermore, face additional problems in accessing healthcare services during this period. In the attempt to reduce risks of infection, the provision of care services for people with dementia is inadvertently impacted. “Interruption of continued care for persons with dementia and support to caregivers is a primary concern at this time. If infected, their [people with dementia] outcome is likely to be worse.” says Dr. Suvarna Alladi, Cognitive Neurologist and Professor of Neurology at the National Institute of Mental Health and Neurosciences (NIMHANS). She further highlights that anticipating and preparing for challenges is key and that the Cognitive Disorders Clinic of NIMHANS has provided guidelines and strategies to be employed by caregivers of elderly with dementia during this uncertain time.

In addition, medical professionals across the country have also started telemedicine services, phone and email consultations, in order to ensure continuity of care and overcome problems associated with access to routine healthcare services.

There are also a few organizations providing long-term care to elderly people living with dementia whose services have been impacted during this period. The most prominent among them is the Alzheimer’s and Related Disorders Society of India (ARDSI). The ARDSI is a registered non-profit voluntary organisation dedicated to dementia care, support, awareness and dementia friendly campaigns, training and research. It has 20 plus chapters in various cities across the country. While they have temporarily suspended their day care services in compliance with government regulations to reduce spread of the virus, they are conducting a number of activities to support caregivers and persons with dementia during the pandemic. “We are providing support and guidance for caregivers via telephone, video conferencing, social media platforms and off-site distance monitoring. We have also initiated caregiver support meetings, as well as one-on-one counselling to help families address behavioural problems and reduce caregiver stress that will see a spurt of during this period” says Ms. Meera Pattabiraman, Chairperson of the ARDSI. She further adds that the ARDSI-run full time residential facilities have taken significant precautions to protect residents, ranging from visitor restrictions to the application of stringent hygiene practices (e.g. hand washing, use of personal protective equipment, safe disposal of medical waste and sanitizing facilities at regular intervals) by staff. She also states that in the absence of sufficient staff to provide care during the lockdown, some residents have been temporarily and safely transferred to nearby nursing homes in order to ensure continuum of personalized care.

Source:

https://www.ardsihyd.org/events/2020/may_awareness.html

https://www.telegraphindia.com/calcutta/alzheimers-dementia-patients-hit-hard/cid/1761232

Similarly, the Nightingales Medical Trust (NMT)—a non-governmental organization that provides accessible and affordable long-term residential dementia care—is also facing challenges that have led the management to modify their service provision. To protect their residents, NMT residential facilities [two facilities, 145 residents overall] are now restricting visitors. Dr. Radha Murthy, founder and managing trustee of NMT says, “A major challenge is the impact on staff providing care at our facilities. The morale of the staff has been affected, as they are unable to go out and have additional responsibilities due to the limited caregiving staff available.” However, she states that the administration is taking serious steps to protect residents, boost staff morale and allay the anxiety of family members. These include implementing additional protocols to prevent risk of infections, having frequent check-ins with staff and keeping family members updated on their loved ones via telephone.

Source:

https://www.deccanherald.com/city/life-in-bengaluru/coronavirus-old-age-homes-in-bengaluru-curb-visitors-to-protect-residents-818079.html

Furthermore, efforts are also being taken by the government to support older people and people living with dementia during this lockdown period. The MoHFW has published a health advisory for the elderly population. The government has also issued a directive providing curfew passes for caregivers, allowing them to access essential services for persons living with disabilities (dementia is included as a condition under the Rights of Persons with Disabilities Act, 2016). Additionally, certain state governments have set up dedicated toll free helplines exclusively for persons with disability and senior citizens.  

Source:

https://www.mohfw.gov.in/pdf/AdvisoryforElderlyPopulation.pdf

https://www.business-standard.com/article/pti-stories/ensure-curfew-passes-for-caregivers-of-people-with-disabilities-amid-lockdown-120040100827_1.html

https://www.newindianexpress.com/cities/hyderabad/2020/apr/05/helplines-launched-for-senior-citizens-in-telangana-2125983.html

References:

Alzheimer’s & Related Disorders Society of India. (2010). THE DEMENTIA INDIA REPORT 2010: Prevalence, impact, cost and services for dementia. New Dehli. Retrieved from http://ardsi.org/downloads/ExecutiveSummary.pdf

Borah, H., Shukla, P., Jain, K., Kimar, S., Prakash, C., & Gajrana, K. (2016). ELDERLY IN INDIA 2016.

Sharma, N. (2020). Covid-19: Going against trend, most patients in India are millennials. Retrieved 6 April 2020, from https://www.livemint.com/news/india/covid-19-going-against-trend-most-patients-in-india-are-millennials-11586000044825.html

Suggested citation: Rajagopalan J, Hurzuk S, Ramasamy N (2020) Report: The impact of the COVID-19 pandemic on people with dementia in India. Article in LTCcovid.org, International Long-Term Care Policy Network, CPEC-LSE. Available at https://ltccovid.org/2020/04/06/report-the-impact-of-the-covid-19-pandemic-on-people-with-dementia-in-india/

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