What are the causes of dementia? What impact might dementia have on marginalized communities like queer and transgender people? What could be the caregiving strategies for coping with dementia?
Many questions like these were part of a community dialogue co-organized by Alzheimer’s and Related Disorders Society of India (ARDSI), Calcutta Chapter and Varta Trust at the Storyteller Bookstore on August 23, 2025. This was probably the first such dialogue in Kolkata to blend two highly stigmatized facets of society and talk about the support needed and possible.
“Dementia is not only a medical condition but also a lived human experience that impacts individuals, families, and communities. By creating space for dialogue and knowledge-sharing, we can transform fear into awareness, isolation into empathy, and challenges into opportunities for compassionate support,” said Nilanjana Maulik, Secretary of the Calcutta Chapter of the ARDSI. Maulik was the main speaker at the community dialogue attended by about 30 people, which included mental health peer counsellors associated with Varta Trust, queer and transgender community members, and their allies.
Maulik informed that studies have estimated a dementia prevalence of 7.4 per cent among adults aged 60 and above in India, which translates into at least 8.8 million people. In Kolkata alone, at least 80,000 people are estimated to be living with dementia.
Maulik’s presentation titled Holding Memory, Holding Identity – Ensuring Dignity and Inclusion for People Living with Dementia and Their Caregivers covered a range of issues related to dementia. Explaining that dementia is the sign of an illness that can impact different parts of the brain, she talked about the nature of dementia (short term memory loss along with loss of other abilities), its types (reversible and irreversible) and their causes, and the stages of irreversible dementia. Among the most common causes of irreversible dementia in India and globally is Alzheimer’s disease.
Encouraging the participants to treat brain health and its upkeep as seriously as other health concerns even before mid-life, Maulik shared insightful ideas on long-term preparations for the possibility of dementia onset later in life. For example, the value of kindness in boosting one’s mental wellbeing and cultivating interests that can help people with dementia remain socially active.
She talked about the diverse biological, social, and environmental risk factors for dementia, including age, gender, lifestyle issues, injuries, and air pollution among several others. The discussion on the pillars of dementia prevention (regular exercise, social engagement, healthy diet, mental stimulation, and proper sleep) particularly caught the audience’s attention, with humorous quips exchanged about how today’s urban life, including the increasing dependence on gadgets like mobile phones, often enhances the risk factors.
Maulik talked about the need for brain health seeking behaviour; tests and evaluations to diagnose dementia; and what can be done medically and socially to manage dementia, including dementia reablement skills (irreversible dementia cannot be cured but it can be slowed down and managed). She also dwelled at length on the emotional and practical needs of caregivers who look after people living with dementia. While in medical settings dementia care professionals need to be sensitized about gender and sexuality diversity, legal recognition is important for chosen family members in caregiving roles to queer and transgender persons living with dementia.
Adding to the discussion, Pawan Dhall, Managing Trustee, Varta Trust said, “It is unfortunate that dementia is socially stigmatized, and the stigma may get amplified in the case of queer and transgender persons who are already stigmatized because of their gender or sexuality. Moreover, coping with dementia requires resources that socioeconomically disadvantaged queer and transgender persons may not have access to.”
Issues around dementia are not researched and talked about enough in general, and even more so regarding queer and transgender communities in India. Dementia is a neurological disorder which can also have links with mental health conditions. “This was the reason we organized the dialogue and engaged our mental health peer counsellors, who act as first responders in situations where queer and transgender individuals are looking for counselling support,” Dhall added. There is a need to train peer counsellors to identify early signs of dementia and equip them with the skills to provide timely support, he said.
At the queer and transgender community level, Maulik suggested developing networks and solidarity groups, which can play an important role in supporting both caregivers and individuals from the community living with dementia. Such social support can help reduce isolation and foster resilience.
At the policy level, stronger advocacy efforts are needed to ensure dementia care is integrated into public health programmes and aligned with gender affirmative care, especially for older transgender persons. Research is needed globally and in India on the potentially greater vulnerability of transgender persons to dementia because of sustained experience of minority stress, and if gender affirmative care can play a beneficial role in dealing with dementia.
Talking about the ARDSI, Calcutta Chapter’s grassroots work related to dementia since 2000, Maulik said that the organization focused on awareness generation, supporting families impacted by dementia, improving early intervention, and fostering dementia-friendly communities. Till date, more than 5,000 people have been counselled in relation to dementia and daycare services provided to 950 individuals. The ARDSI, Calcutta Chapter’s rural outreach has covered more than 5 lakh beneficiaries.
The event also included the screening of Muhurto, a short documentary on dementia produced by the ARDSI, Calcutta Chapter.
About ARDSI, Calcutta Chapter: The organization is a non-profit agency which has been working on dementia awareness, advocacy, caregiving support, and dementia-friendly community building for over 25 years now. Contact: Nilanjana Maulik: 93310 39839; www.ardsikolkata.org; ardsikolkata@yahoo.co.in, ardsicalcutta@gmail.com
About the main photo: A scene from the community dialogue on dementia awareness held at Storyteller Bookstore on August 23, 2025. Photo credit: Swati Das
It was indeed a very interesting discussion… I came away with a lot of learning.