Research has found that there is a need to raise awareness of dementia in India across all stakeholder groups where it was common for stigmatising language to be used when talking about dementia. The paper was written by STRiDE colleagues, Saadiya Hurzuk, Nicolas Farina, Meera Pattabiraman, Narendhar Ramasamy, Suvarna Alladi, Jayeeta Rajagopala, Adelina Comas-Herrera, Priya Thomas and Sara Evans-Lacko, and was published in Dementia this week.

There are about 5.3 million people with dementia in India: only one out of ten people living with dementia in India ever gets a diagnosis, care or treatment. There are various obstacles to delivering dementia care and support to people living with dementia and their carers, as well as inadequate understanding of dementia in the general public and within the health care professionals. Studies in India indicate that people with dementia experience stigmatisation in society as well as neglect from their families. Social prejudice associated with dementia makes it a challenging experience; in addition, it makes the persons with dementia and carers feel isolated and stigmatised.

The research used focus groups and individual interviews to explore perceptions, beliefs and experiences of dementia across a number of stakeholders in India, with an effort to understand stigma towards people living with dementia. Participants were recruited in two diverse cities of India (Chennai and Delhi), and were comprised of a range of key stakeholders, including persons living with dementia (n = 8), caregivers (n = 19), health care professionals (n = 16) and the general public (n = 15).

Following a thematic analysis, three overachieving themes were identified: (1) poor awareness, (2) stigma and (3) barriers to accessing care. These all occurred within the context of socio-cultural beliefs.

While each stakeholder group had different experiences of dementia, it was common for all participant groups to use stigmatising language associated with dementia. In many cases, stigmatising beliefs and poor understanding of dementia resulted in poor care. There is an apparent need to raise awareness of dementia in India across all stakeholder groups; the fact that participants were able to self-identify that they had a lacked awareness of the condition may indicate that these groups are receptive to learning more about dementia.

Full paper:

Hurzuk S, Farina N, Pattabiraman M, Ramasamy N, Alladi S, Rajagopalan J, Comas-Herrera A, Thomas PT, Evans-Lacko S (2022) Understanding, experiences and attitudes of dementia in India: A qualitative study, Dementia. https://doi.org/10.1177/14713012221118774