While the metaphorical question, “how do you eat an elephant?” is often linked to the late Archbishop Desmond Tutu and his approach to tackling the issue of apartheid in South Africa, it could just as easily apply to the challenge India is facing when it comes to one of the world’s most pressing health issues – dementia.
“One bite at a time”, was Tutu’s answer to the pachyderm question. But when you consider data from 2017-2020 highlighting India has approximately 8.8 million individuals over the age of 60 living with dementia, that’s some chewing.
Future projections don’t make things any more palatable.
Out of an overall population of 1.4 billion, there are 119 million people aged 60 and above, and that population, like much of the rest of the world, is ageing rapidly. India’s elderly population is projected to reach over 347 million, or nearly 20 per cent of the total, by 2050. (Ireland, by turn, is projected to have more than 1.6 million people over the age of 65 by 2051, a doubling of the current number.)
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Enter the elephant eaters: Dr Sridhar Vaitheswaran, Dr Rohith Khanna Deivasigamani, and their DEMCARES team. Their project, “Reaching the Unreached” targets the rural regions of the Chengalpet district Tamil Nadu, a state that boasts the most southern point of this vast country as well as 14.8 per cent (10 million) of its older population, nearly 4 per cent (400,000) of whom are believed to live with dementia. Their vision is to develop a community-based model for geriatric mental health and dementia care that could be easily adapted for use in other rural communities across India and other low- and middle-income countries.
“The challenge can feel overwhelming when you look at the numbers,” explains Dr Deivasigamani, when we sit down for a chat in Trinity College’s Global Brain Health Institute (GBHI). “When you spend time working in those villages and communities, you become a part of their lives. They are no longer just numbers. Many of them spoke to us about feeling lonely in their later years, and how our team’s visits and conversations brought them comfort and happiness.”
DEMCARES was launched in 2015 by the Schizophrenia Research Foundation India, a WHO-recognised entity founded in 1984 by Dr M. Sarada Menon, the first woman psychiatrist in India. Its rural project, Reaching the Unreached, benefits from funding from the Azim Premji Foundation.
Dr Deivasigamani grew up in modest circumstances in Chennai, a city of 6.8 million, going on to become the first doctor in his family. For the next 12 months, however, Dublin is home, as his work in the field of dementia care saw him selected as one of the 2025-26 cohort of Atlantic Fellows hosted by the GBHI in Trinity College. Both GBHI and the fellowships are funded by Atlantic Philanthropies, the “giving while living” foundation established by the late Irish American entrepreneur Chuck Feeney, which, over 37 years, invested more than $8 billion worldwide, with significant contributions to the education sector in Ireland as well as the Northern Irish peace process.
Dr Deivasigamani is quick to praise his chief and mentor, Dr Sridhar Vaitheswaran, for facilitating the Fellowship opportunity and for his vision in establishing the “Reaching the Unreached” programme. Its model is based on recruiting and training a network of community health workers – 19 in total, all women, as they are more likely to be given access to strangers’ homes while providing care. These frontline workers travel enormous distances, often in extreme weather conditions on unpredictable public transport, to deliver the vital intervention. A wider network of 79 volunteers, many of whom are local men keen to play their part, support them in the local villages.
The team initially deploy well-known travelling storytellers and performers to deliver “Villu Paattu”, an art form of musical storytelling popular in Tamil Nadu and other parts of southern India. Such performances help raise interest and awareness while tackling myths and misconceptions.
“The people of Tamil Nadu are used to these storytellers coming through their villages. We recruited one of the most well-known from the area to work with us. It took some work to get the content right, to make sure their story was getting across the right messages about dementia, but it works well. After performances, we have people coming to our team saying ‘my family member has these symptoms’!”
Following the performances, the community health nurses host screening programmes, while mobile clinics and home visits are used to confirm diagnosis. Since 2023, 45,000 rural community members have been engaged through 1,549 awareness programs, some 10,000 of whom received screening.
Referrals were made for 2,630 individuals to one of the three psychiatrists (including Dr Deivasigamani) or three psychologists involved in the program, who confirm any diagnosis. More than 2,000 people have been diagnosed with a formal mental health condition (twice the number of women than men), with 270 diagnosed with a form of dementia. The cost per person screened translates to a remarkably cost-effective 2,755 Indian Rupees (€27).
Beyond the scale, challenges abound.
There is no definitive term for dementia in the local language of the region, Tamil, so the team use the common term Maradhi Noi or “disease of the memory” to get their meaning across.
“Most people believe the symptoms are just something that happens when people get older and there’s nothing that can be done about it. That is a big obstacle to overcome,” explains Dr Deivasigamani. “There is also a fear of receiving a diagnosis – that their family member will be shunned or discriminated against if they get one.”
One symptom, psychosis, brings with it a challenge that the HSE didn’t have to consider when it launched Ireland’s first national dementia strategy in 2014: the belief that evil spirits may be at play.
“We have seen family members take individuals with psychosis to a local faith healer or witch doctor first, as they believed an evil spirit or black magic had fallen upon them.
“This is ingrained in the local culture. Families seek a Sammiyar, or divine intervention, as faith healers are seen as an intermediary between them and their gods. But you are more likely to see families bring young people suffering from psychosis or mental health disorders for this type of treatment.”
To acknowledge the continued prominence and importance of faith healers in rural life, they are depicted in the theatre performances and storytelling; this also aims to inform faith healers about the signs and symptoms of dementia. Such embedded cultural practices can have ramifications when a pharmaceutical intervention is prescribed to help delay or manage some of the more serious symptoms of dementia or other mental health conditions.
“There is still a significant anti-medicine sentiment in rural communities – they will ask if there is any other option, despite reassurance that medication can help with some of the more challenging behavioural symptoms,” Dr Deivasigamani notes.
Having a family member available to administer medication correctly can be a challenge, too. Such rural parts of India are empty of their young on both a daily and permanent basis so they can seek employment in urban centres. For a son or daughter left to care for the last surviving elderly parent, journeys are long and public transport dependent. This leaves many older family members, mostly women, living alone while suffering from advanced dementia and dangerous symptoms, including a tendency to wander and get lost in what can be treacherous landscapes.
In desperate last-ditch measures to keep them safe while their carer is away at work, some have been found chained to a tree or in their house all day.
“It looks like they are doing so much harm, but they are doing the only thing they can do to try and keep their mother or father safe,” explains Rohith, painfully aware of how the images provided look to the public. “They are helpless – surviving from one day to the next on the money they earn. We had one such case where a son was left caring for his mother who had severe, advanced dementia. He left each day at 4.30am, returning at 8pm. He was in tears – “why would I do this to my mother if I had another option?” he cried to us.
“This is where our local volunteers are invaluable – they help administer the medication. But it remains a big challenge. Early intervention could do so much to help these people.”
Remember that the next time someone asks you how to eat an elephant.
