Blog – Learning about dementia care in India

July has been pretty busy in terms of travelling, but very worthwhile. Having presented our recently published systematic review on inequalities in dementia social care across 23 countries and emerging findings from our ESRC Colombia mental health study at the IPA Congress in Portugal, the next day I flew out to Bangalore in India to set up a new dementia collaboration between the University of Liverpool and the NIMHANS, and the Institute of Population Health.

Always wanting to go to India, but actually now travelling there for work, was very special, and so much more insightful than any article you can read about dementia care in this vast country. The NIMHANS, or National Institute for Mental Health and Neurosciences, appears to be the leading centre on dementia diagnosis and care in the country. I’ve read a lot about their work prior to visiting, so it was a pleasure to put what I’ve read into context.

After a long tuk-tuk drive across nearly all of the NIMHANS hospital grounds, including mistakenly entering the gated psychiatric wing only to realise we should head to the neurology unit, we met a number of clinicians and clinical academics from Bangalore. We exchanged stories about dementia, me asking lots of questions about how diagnosis and care is delivered in the city and the country, and learned that patients come from all over India to receive a diagnosis here. This is if they know about dementia, if it’s not too stigmatised within their family, and crucially, if they have the means to pay for it themselves.

Dr Giebel with colleagues in India.

Giving a talk in front of over 100 clinicians, students, and academics about my research and inequalities in dementia opened up an important discussion about the topic, more so than you possibly can do via Zoom or Teams in a webinar when you’ve never met people before. Prior to the seminar, we’ve been walking around the private hospital garden, where staff and the few inpatients there are enjoyed some calm outdoor time, away from the bustle of the busy city or away from their hospital rooms.

Only by actually experiencing this very different setting enables you to understand perhaps a bit better the situation older adults and people with dementia are in. Dementia is heavily stigmatised, if known, and seeing a doctor is not free like it is in the NHS. People have to pay every time they want to see a doctor, whilst many symptoms of dementia can often be mistaken for normal ageing or wider mental health problems. And even if someone receives a diagnosis, how to receive any follow-on care?

Besides more meetings, including at the Institute of Population Health, we went around certain parts of the city and saw locals sell food, spices, and flowers on daily markets. In the morning, I went for a run in Cubbon Park before traffic was allowed in, and surprisingly, I saw plenty of older adults going for a stroll, which was lovely to see.

Overall, the visit to the NIMHANS and IPH in Bangalore, witnessing the culture and care settings, and meeting academics and clinicians in person, was of much more meaning than any Zoom meeting could be. Right now, we’re awaiting the outcome of a funding application and are applying for another one focusing on a separate issue in the field of inequalities. If you have the possibility to travel and meet in person, I would strongly encourage you take up that opportunity. Because research is all about learning new things, in new environments, right?

Dr Clarissa Giebel

Author

Dr Clarissa Giebel is a Senior Research Fellow at the University of Liverpool and NIHR ARC North West Coast. Clarissa has been working in dementia care research for over 10 years focusing her research on helping people with dementia to live at home independently and well for longer, addressing inequalities that people with dementia and carers can face. Outside of her day work, Clarissa has also organised a local dementia network – the Liverpool Dementia & Ageing Research Forum, and has recently started her own podcast called the Ageing Scientist.

Follow @ClarissaGiebel