Dr Sudhir Kumar, a consultant with specialisation in old age psychiatry and neuropsychiatric disorders discusses his views on the importance of Dementia Friendly Communities (DFCs) and how India needs to work more towards it
Dementia-friendly communities help people with dementia feel included and supported in the day to day surrounding – the places they work, live and play A dementia-friendly community focuses on spreading awareness about dementia and providing a safe and supportive environment for people with dementia and their family members.
When we talk about a Dementia Friendly Community (DFC), what does it exactly signify? What are the key building blocks?
Considering where India is at the moment, as far as dementia care is concerned, a DFC is one where an early diagnosis can be made and once the diagnosis of dementia is done, there should be facilities available to provide appropriate care and treatment throughout the dementia journey. This will comprise dementia friendly hospitals, day centres, trained carers, respite and residential centres, palliative care, to name a few. The social and physical environment which the person with dementia lives in should also be conducive to give them the maximum quality of life possible.
Why are Dementia Friendly Communities important in our society?
It is estimated there are more than four million people with dementia in India. Governmental agencies or NGOs working in isolation would not be able to fully address the challenges associated with it. There should be a concerted effort involving families, health care professionals, voluntary agencies and the general public to identify solutions to this ever increasing challenge as the population is growing older and there is no medical cure in sight. It is with this background that a DFC becomes an important step as societal support for those affected.
What elements are critical to the success of DFCs based on the experience so far?
The specific parameters are usually indicative of the key players and stakeholders in a DFC campaign at that point in time. When the project is national, it is pretty certain the government or a resourceful national organisation has thrown its weight behind it. Regional work usually involves a network of agencies and local work is primarily taken forward by local volunteers. What we ideally need is a combination of all of these. We need the government, national and regional organisations, local groups and individuals to be a major part of it.
Does the DFC work more on individual contributions or better as a group effort?
It depends on the circumstances one works in. For example, a health care professional as an individual may be quite effective in his work to make his place of work dementia-friendly, while a group of teachers and students would be more effective in making their school dementia-friendly. The ' community' in DFC can be as small as a few people who work in an office or a small neighbourhood to as large as a whole country.
How much awareness of the need for such a community is there in the Indian and Asia context vis a vis the more developed nations? And why? Which countries have models that are worth emulating?
Awareness of dementia as a medical condition itself is quite poor in countries like India, let alone the services, including DFC. Countries like the UK, Australia and Ireland definitely do have models worth having a closer look at. Among the Asian countries, Japan has been a leader. In fact, many of the DFC related programmes first originated in Japan. However, these models of good practice have to be significantly adapted to the local context (culture, country, availability of resources, governmental involvement) for them to be successful. A model which works well in the UK, with an established and robust health care set up for dementia care, would not be suitable in India where this is absent at present.
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What are the targets that a DFC sets for itself and how does it achieve it?
In general, the main target would be good quality of life for people with dementia and their families. This has to be broken down depending on individual circumstances. For example, in India the targets could be things like increasing the rate of early diagnosis, establishing Memory Clinics and day centres, ensuring social support, etc.
If you had to prioritise the top 3 targets for India, what would they be?
I can’t emphasise enough the importance of
- improving awareness regarding dementia across all sections of the society. Increasing the awareness should go along with
- developing services such as going for early diagnosis and offering appropriate treatment.
- Training should also be multilayered and task-specific.
What role should the government play in creating such communities?
The government needs to recognise the impact and magnitude of the problem which will, in turn,be reflected in the policies. Funding allocation is also something which should happen at the governmental level. We do not have a national government dementia strategy as yet, even though ARDSI(Alzheimer’s and Related Disorders Society of India) did publish the Dementia India Report in 2010.
Does medical training or training curriculum of nurses need change? Any specifics?
The situation has improved over the last few years. However, there are still miles to go in imparting adequate training to health care and social care professionals.
How committed is India towards the implementation of a DFC? What are the unique challenges that India faces?
I am sure there are individuals and groups very committed to the cause, but there isn't a national movement yet with common principles to work on. This is what we hope the ARDSI national guidelines on DFC will bring about. Challenges are many: poor awareness about the impact of dementia on society, ignorance about the magnitude of the problem among the public and policy makers and the ailment not being seen as a priority issue by the government are just some of the issues which need to be tackled.
Are DFC experiments already in play in India?
It is not an experiment, it is a development, and several ARDSI Chapters are already in the forefront in building DFCs, though they do not call it a DFC-related work. I hope with the concept and the criteria getting more popular, the people who work in this area would be able to work within a structured framework and be more aware of setting targets and accordingly plan their action sof achieving them. It may be a case of tweaking a few things they already do or take upon other related work which they have not been focusing on so far. The nature and amount of work they take upon will depend upon the manpower and resources at their disposal. The guidelines and criteria will serve as pointers to help them in their work. Many people have a notion that DFC campaign is a novel experiment, which is not true. I see it as a framework to consolidate the good work happening already and also a way to address issues hitherto overlooked.
Is this framework defined? What are the initiatives in place to define such a framework?
ARDSI has been working to bring out the national guidelines for DFC in India which will be in public domain soon. I can promise there isn’t going to be anything pathbreakingly new (as expected) but a consolidation of what we have spoken so far.
If we look at countries where the DFC campaign has been successful, it is evident they received acknowledgment and support (financial and otherwise) from the government. This is where we in India have to work hard on. Talk to the politicians and journalists you know of and make use of all available opportunities.
Please explain how DFCs focus on improving ‘inclusion’ and the ‘quality of life’ for people with dementia.
Engagement with people affected by dementia in formulating the model for DFC is at the crux of any DFC programme which some of the countries seem to be successful at. Countries like India should make a conscious effort to ensure this, as involving people affected in care-related decision-making is a relatively new concept here.
If we look at how DFC targets have evolved in other countries, many of them have begun their work by talking to the people affected by dementia and their families. In my opinion this is the best way to make the programme effective.
Which areas of a social life does a DFC need to concentrate on for a well-rounded result?
DFC models in some other countries have focused on people (improving awareness, skills, knowledge), place (making the physical environment dementia-friendly), resources (improving resource allocation) and networks (developing and facilitating networks in the community for dementia care and support). These basic principles are applicable in all countries. What we have to develop further are the individual building blocks in accordance with our specific situations and needs.
Considering that the Indian culture stems from strong family bonds, in theory we should not have trouble in providing the social support people need! However, we know this is not the case for many in the society due to several reasons. We need to tap into what is available. We should see how we can re-establish our ‘connections’ and make use of them. There should be places where people with dementia can go to and there also ought to be people who can take care of them and spend time with them.
How can we, as PatientsEngage contribute in creating and supporting DFCs?
I believe PatientsEngage can play a major role in creating and supporting DFCs. There are many avenues, be it improving awareness, surveying what the families and patients would want, engage them in discussions about what they would like to see in a DFC, fund raising, etc. that PatientsEngage could involve itself with.
Dr CT Sudhir Kumar obtained his MD in Psychiatry from JIPMER Pondicherry, MRCPsych, MSc in Psychiatry and Diploma in Geriatric Medicine from the United Kingdom and has worked in CMC Vellore, NIMHANS Bangalore, Maudsley Hospital and Institute of Psychiatry in London. He currently works between the UK and Kerala.
