Estimated reading time: 7 minutes
The turning point
The spark for Nilanjana’s life’s mission came early. She arrived in Boston in the fall of 1994 to pursue a Master’s degree in Human Services Management at Brandeis University. “My goal was to prepare for a career in elder care and running nonprofit organizations,” she told me. Following her faculty advisor’s recommendation, she began working part-time as an intern at a dementia care center in Boston. “That was the year Ronald Reagan revealed his dementia diagnosis,” Nilanjana recalls, “I knew nothing about dementia then.” The four years she spent working at the center gave her a deep, practical understanding of what it means to live with dementia. “That experience transformed me,” she says.
Early life
Born in Darjeeling, in the foothills of the Himalayas, Nilanjana grew up in Siliguri, a vibrant town on the banks of the Mahananda river, surrounded by tea gardens and dense forests. She recalls the joys of growing up in a large family circle with the “comfort of friendship and connection, and constant learning from elders.” She attended a missionary high school and obtained bachelor’s and master’s degrees in sociology and anthropology at the University of North Bengal. “Although I’ve spent time abroad, my heart has always been anchored in India,” she told me.
Return to India
Her heart anchor brought Nilanjana back home in 1998 with her family. She planned to start a support service to help family members deal with loved ones with dementia. “On my visits back from Boston, I witnessed firsthand the silent struggles of families living with dementia—often in isolation, with little support or understanding from society,” she explained. There was very little knowledge or awareness of neurological diseases and their impact. “I came back because I felt a strong calling to be part of the solution, to help build systems of care and awareness where they were most needed. Calcutta, with all its chaos and charm, offered both a challenge and an opportunity — to create change, to serve my community, and to ensure that no one with dementia or their caregiver feels forgotten.”
A Sunday newspaper article she happened to read in September 1999 changed Nilanjana’s trajectory. It described Mrs. Shefali Choudhuri, a ‘warm and cheerful’ lady in her 80s; ‘a picture of strength and determination,’ who was giving all she had to care for her 59-year-old daughter diagnosed with advanced Alzheimer’s disease and bedridden. The article mentioned Mrs. Choudhuri’s plans to help others fight dementia in her own way.
Nilanjana contacted Mrs. Choudhuri and introduced herself. “Shefali was an inspiration,” Nilanjana says, “a lady who thought beyond her own personal tragedy.” The two ladies – young and old, with a shared mission – joined forces. Nilanjana helped Shefali realize her idea to form the Calcutta chapter of the Alzheimer’s & Related Disorders Society of India (ARDSI), which they formally registered in May 2000.
The only specialized dementia organization for the entire eastern region of India today, it provides care and support for people living with dementia and their caregivers. “Shefali taught me the discipline that’s needed to fulfill our mission,” says Nilanjana. ARDSI was a two-person organization through 2004; it now has a staff of 25 skilled workers. Nilanjana continues to volunteer her time, currently serving as ARDSI Calcutta’s Secretary General with oversight and responsibility for all operations.
Dementia in India
India is home to over 8.8 million people living with dementia, a number that will triple by 2050, given India’s ageing population. Diagnosis rates remain low — many families either don’t recognize early signs, or are hesitant to seek help due to the associated societal stigma. Public healthcare infrastructure and trained personnel are lacking, especially in rural areas. The economic impact is also severe: families often bear the entire burden of care, both emotionally and financially, without adequate support systems. Nilanjana and other dedicated professionals like her have now begun to change this narrative.
From silence to support
‘Dementia toh pagalpan hi hai, na?’
“I still remember the first time I was asked, ‘Dementia is just madness, right?’” When Nilanjana first returned to India “filled with ideas, training, and hope,” what she encountered was silence. The word did not exist in public conversation; care was often reduced to containment behind locked doors. Over the intervening 30 years, Nilanjana sees encouraging signs of change from silence to support. Awareness is slowly growing, but it’s still far from adequate.
In many communities, symptoms are dismissed as “normal ageing” or attributed to fate, karma, or even supernatural causes. There is often no understanding that dementia is a medical condition, and a manageable one with the right support. Families don’t know what to do after a diagnosis, and there is very little guidance on care pathways, services, or the rights of persons with dementia.
The three pillars
I asked Nilanjana to describe what she does for the Alzheimer’s cause. “My work at ARDSI Calcutta spans three key pillars,” she said, “Awareness, Training, and Care. I run day-care and home-care services tailored for people with dementia, offer training programs for caregivers and professionals, organize community outreach and awareness events, and engage in advocacy at local and national levels. My recent focus includes developing dementia-friendly communities and promoting brain-health education, particularly for women and girls.”
She supports families through counseling, home visits, assessments, and telephonic well-being check-ins, helping them to develop and execute care plans and checklists tailored to ensure safety and suit their particular needs and social-emotional environments.
Nilanjana realized she needed to partner with physicians, geriatricians, and medical institutions and persuade them to become members of ARDSI. “65% of our referrals now come from doctors,” she told me. She harnesses the power of storytelling by getting family members to overcome the stigma and share their own personal experiences with others. “Our efforts at ARDSI are focused not just on education, but also on shifting mindsets,” she says.
ARDSI’s reach and effort continue to grow. They increasingly help to develop care plans for patients whose family members live in the US and other countries. Their second day-care center will soon open in the northern part of Calcutta. ARDSI recently purchased a parcel of land for the construction of a Dementia Village, aptly named Smr̥ti Palli or Memory Village – a 24/7 dementia care center modeled after The Hogeweyk Dementia Village in the Netherlands.
Continuous learning
Along the way in her incredible life’s journey, Nilanjana earned a master’s degree in dementia studies in 2014 from Scotland’s University of Stirling as a Commonwealth Distance Learning Scholar, and a Mini Fellowship in Successful Aging & End-of-Life Care at Stanford University’s School of Medicine in 2015. She is certified as a Master Trainer in Alzheimer’s care by Alzheimer’s Disease International and has trained over 5,000 care workers across India. “I never went for a PhD,” she smiles, opting instead to dive into the “real work of caring for dementia patients.” A National Awardee for ‘Best Dementia Care Worker,’ she continues to focus on improving dementia care and support across India.
You gave me back a part of my Ma
I had a final question for Nilanjana. What else would you like our readers to know? Here is her response:
I recall a woman who brought her mother to our daycare, unsure if anyone could help. Her mother had become withdrawn, irritable, and barely spoke. After a few weeks of structured engagement—music therapy, storytelling, personalized activities—she began responding, singing along to Rabindra Sangeet, and even smiling again. The daughter cried and said, “You gave me back a part of my Ma I thought was lost forever.” These moments reaffirm why I do what I do.
Please know that dementia is not just a medical condition—it is a social and emotional crisis. The person you love is still there, even if their words are lost. Let’s build a society that does not hide dementia, but meets it with understanding and care. I urge your readers to be proactive—learn the signs, seek help early, support caregivers, and advocate for a national dementia policy. And if you can, contribute your time, voice, or resources to organizations like ours. Every act of support matters.
What can I do today?
The first thing you notice about Nilanjana Maulik is her endearing smile. She clearly loves what she does and has successfully balanced her professional and family life with the wholehearted support and encouragement of her husband, daughter, and son. “Every morning, I wake up and ask myself, ‘What can you do today?’ Life has been good to me”, she says, “and it will get better. There is so much to look forward to, so much I still want to do.”