Over 4 million people are living with dementia in India and this figure is expected to double every twenty years. Here at Alzheimer’s and Related Disorders Society of India (ARDSI), we’ve been attempting to define what a Dementia Friendly Community (DFC) might look like here, using workshops to get people talking about ways we can help implement these programmes.
We’ve so far conducted five workshops across India, in Trivandrum, Chennai, Bengaluru, New Delhi and Cochin, and were pleased to welcome 200 participants from all walks of life, including family carers, health and social care professionals and the general public. The workshops encouraged participants to identify the challenges associated with setting up DFCs, and ways we can overcome the barriers. Lots of topics were discussed, but there were some key points which emerged from the session.
Working with the government and other partners
Everyone was very enthusiastic about working with the government and other partners, but there was a concern about how to go about it, given that dementia is unfortunately still a low priority for the government. India does not yet have a national dementia plan, despite the strong, evidence-based recommendations of ARDSI’s Dementia India Report (2010). We believe partnership is a strong cornerstone for success, so we discussed how local collaborations would be equally important among both governmental and non-governmental agencies to help maximise the impact of DFCs.
Using DFCs to raise awareness of dementia
Our estimates show that more than 60% of people living with dementia in India have never been diagnosed. Without a formal diagnosis, it is very difficult to educate and provide information to families to help support the person living with dementia, especially with regard to care skills. First and foremost, it is vital that we spread the message that dementia is not a normal part of ageing, and that more needs to be done to support people living with the disease. Creating awareness among a range of sections of society was identified as one of the most important factors in creating DFCs, especially amongst community level workers, social care and health professionals, to strengthen the current health system in India. A multidisciplinary approach is needed, offering robust care plans. It is our hope that by creating a ‘Dementia Friends’ style programme, we will educate the public on how best to support people living with dementia.
The banyan tree
Having an easily recognizable symbol for dementia friendliness is really important, so during the workshop it was suggested that we should adopt the banyan tree as the symbol for India. It is the national tree of India, and is associated in Indian culture with wisdom and ageing due to its longevity.
In a country like India, we felt it was important that a DFC scheme should include service development as an essential component. Supporting people living with dementia and their families throughout the dementia journey is really important, and there is much we need to improve. Over the past few decades, there have been big changes in the traditional family structures, more women now going out to work means there is an increased demand for external support services. Community level solutions which help respond to this issue and support families are also needed.
So what might a more dementia friendly India look like? Our aim is to develop communities that recognise dementia as medical condition and to be able to support people living with dementia and families, working within networks and partnerships to achieve these goals.
We would like to thank ARDSI Chennai Chapter, Nightingales Medical Trust, Bangalore, organizers of 5th International Conference on elder dignity and abuse, Centre for Gerontological Studies Thiruvananthapuram, India; 17th Asia Pacific Regional Conference of ADI, New Delhi and World Psychiatric Association Regional Congress, Cochin 2015 for facilitating these workshops.
By Sudhir Kumar and Babu Varghese