Dementia Friendly Communities in India - the way forward

Dr CT Sudhir Kumar & Mr Babu Varghese, Research and Development Centre, Alzheimer’s and Related Disorders Society of India (ARDSI), Cochin, India

In attempting to define what dementia friendliness and Dementia Friendly Community (DFC) means to India, we conducted five workshops in different parts of the country: Trivandrum, Chennai, Bengaluru, New Delhi and Cochin. Two hundred participants, including family carers, health and social care professionals and lay public attended the sessions. The workshops encouraged participants to identify the challenges associated with establishing dementia friendly communities. The themes which emerged in these sessions are discussed below.

Governmental involvement and partnership working - The concept was received with great enthusiasm but there was much scepticism regarding how it would be implemented. Lack of recognition of dementia by government as a priority was pointed out as the main reason for the scepticism. Though the participants recognised the relevance of national initiatives, they felt the situation in India equally warrants more local collaborations especially among governmental and non-governmental agencies.

Creating awareness - Creating awareness among various sections of society was identified as the most important step towards creating a dementia friendly community. There was a general consensus that more should be done to spread the message that dementia is a medical condition. There should be special emphasis on dementia awareness among government officials, politicians and policy makers, school and college students, and community level workers who work in close contact with members of the public. It was clear that a ‘one size fits all’ approach is not effective and that awareness creation should be tailored to the specific groups with a built in system to assess the impact and ongoing contact.

Training of health care professionals - There were several instances quoted by the participants when the doctors they have consulted offered no advice regarding dementia diagnosis or management. This usually led to more consultations with several specialists with repeated investigations until they eventually met a doctor who could explain the condition and offer a satisfactory management plan. This suggests a need for sensitisation and upskilling of health professionals on diagnosis and management of dementia.

Multidisciplinary care approach – Fulfilling the expectations and requirements for a person with dementia and their carer is not possible during a routine consultation with a doctor. Multidisciplinary teams (e.g. Memory Clinics) with the expertise and time to offer a robust psychosocial care plan, education and training to the caregivers in addition to the traditional medical model of care could be the answer to this concern. However in government settings such resources would only be available in tertiary care centres. Promoting such facilities as centres of excellence which also take the responsibility of dementia care training of health professionals who work in other settings might be the answer. Towards this goal, ARDSI has published guidelines on how to establish Memory Clinics in low-resource settings similar to India.

Symbolisation of DFC concept - The importance of having an easily recognisable symbol for dementia friendliness was emphasised by the participants. There were several suggestions and a symbolisation of a banyan tree was suggested by many. The banyan tree has national relevance to Indian culture and its heritage and the longevity spans several decades. It also symbolises wisdom, which in Indian culture is associated with age and getting old.

Service development and support networks - The general consensus was, in developing countries like India, the concept should be widened to make service development an essential component as well. The services which would be beneficial at various points of the dementia journey are facilities for diagnosis, follow up, dementia education and care planning. There should be resources to train family caregivers to deal with various aspects of cognitive impairment, behavioural problems and activities of daily living; and a framework for psychological and practical support for families. The need for day centres, trained professional caregivers and full time care centres was also suggested by many.

The next step is publishing national criteria for dementia friendly communities in India, which may be useful for other low and middle income country settings as well, and this work is well under way.

In summary, a community in which people know about dementia as a medical condition with several psychosocial challenges, where an early diagnosis is made by health professionals with strong networks and partnerships in the community to provide support and appropriate services, to have a good quality of care is a dementia friendly community.