Understanding, experiences and attitudes of dementia in India: A qualitative study

Abstract

India is the world’s second-most populous country and 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 deliver dementia care and support to people living with dementia and their carers. Furthermore, there is 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. Focus groups and individual interviews were used to explore perceptions, beliefs and experiences of dementia across a number of stakeholders in India, with an effort to understand stigma towards people 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 with dementia ( n = 8), caregivers ( n = 19), health care professionals ( n = 16) and the general public ( n = 15). Following a thematic analysis, we identified three overachieving themes; (1) Poor awareness, (2) Stigma and (3) Barriers to accessing care. These all occurred within the context of socio-cultural beliefs. Whilst 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.

A call for clinical trial globalization in Alzheimer's disease and related dementia

“…India in particular is characterized by cultural and linguistic diversity, high rates of illiteracy, and educational heterogeneity 58,59 . A lack of awareness, stigma, and late diagnosis pose major challenges toward recruitment of patients at an early stage of the disease, and this gap is being addressed by advocacy measures at the levels of community and policy 60 . Lower life‐expectancy in India, high burden of vascular risk factors, and a diversity of genetic factors also affect clinical outcomes, and these factors should be systematically incorporated into clinical trial design 61 .…”

Pathways to care for people with dementia in India: An exploratory study using case vignettes

“…In addition, we acknowledge that people living with dementia and their caregivers did not contribute to the development of the vignettes. While the professional inputs of majority of team members are informed from their day-to-day work with people with dementia and/or their families as well as other aspects of the STRiDE project including some empirical work (Hurzuk et al, 2022), we recognize the urgent need for primary research on pathways to care for dementia care in India.…”

“…This in-depth desk review and expert inputs gathered from a multidisciplinary group of professionals that comprised the STRiDE India team (i.e., a neurologist, psychologist, psychiatric social worker, leads of an NGO focusing on supporting people with dementia and their caregivers and a health and long-term care policy researcher) contributed to the development of the case vignettes. It is important to highlight that as part of the wider STRiDE project primary research interviews with various stakeholders on topic areas such as stigma and awareness of dementia had also been conducted (Hurzuk et al, 2022) and this further informed expert input in the vignette development. The case vignettes were validated by six members of the project's national advisory group and analysed using an approach that builds on framework analysis (Gale et al, 2013) to develop scenarios that 1) identify how people living with dementia and their caregivers navigate care and support by accounting for the diverse and heterogeneous factors that influence care; 2) highlight gaps and challenges associated with existing models of dementia care services in the country; 3) provide recommendations to overcome challenges identified.…”

Dementia stigma: representation and language use

“…Particular linguistic labels are reported to be stigmatizing in a dementia context, including demented, senile, patients (beyond a healthcare context), victim and sufferers (Bailey, Dening, and Harvey 2021;Hudson et al 2022;Werner et al 2019), the latter because it "implies that people living with dementia are helpless, thus reinforcing inaccurate stereotypes and heightening the fear and stigma associated with dementia" (O'Malley, Shortt, and Carroll 2022, 1356). Hurzuk et al (2022Hurzuk et al ( , 2301 similarly argue that words such as Paittiyam (Tamil 'lunatic') and Man Buddi (Hindi 'halfwitted') reflect and contribute to dementia stigma. Interestingly, Hansen et al (2022) highlight that individuals living with dementia may also use stigmatizing language, for instance by referring to other people with dementia as the demented.…”