Community-level work: A Dementia-Friendly India
“Dementia-friendly communities (often abbreviated as DFC)” is currently a buzzword in the international dementia circles, and a topic discussed in many conferences and published papers. Volunteers may wonder what it is, and wish to take on projects that help their community become dementia friendly, or even want to create a “dementia-friendly India.”
This page briefly explains the concept of dementia-friendly communities as discussed internationally and examines the current ground realities of India to see whether (and if so, how) it can be used to improve things in India. Information and discussions here may help concerned persons decide whether to consider working on wider community-level initiatives under a DFC umbrella, or whether to look more on specific dementia initiatives.
- Summary of observations and suggestions
- Salient DFC concepts and topics, from current discussions in International forums
- Why the international DFC approach cannot be directly applied in India
- The pioneering efforts for DFC projects in India (A “dementia-friendly Kerala”)
- Making India dementia-friendly: Suggestions for concerned persons
- Resources and acknowledgments
- Everyone agrees with the core intention of DFC: we should try to help persons with dementia and their families have fulfilling lives by making our communities suitably supporting and empowering
- However, while the concept is useful, the criteria and implementation being aimed at by richer countries is not directly usable in India for multiple reasons.
- Achieving dementia-friendliness is an ongoing journey. A community aiming for it must undertake dementia-friendliness based on what that community wants to focus on, how it can achieve it, and what level it considers satisfactory. The “target” may be a moving target.
- A lot of basic work needs to be done in India on multiple fronts to even aim at the sort of DFC discussed in richer countries
- Lives of persons with dementia and their families can be made easier and more fulfilling through many actions whether or not they are done under the label of DFC. These include actions that improve awareness, provide reliable and suitable support, integrate dementia into other social and health initiatives, etc.
- DFC requires a comprehensive approach on multiple aspects. Volunteers who want to work on a DFC project in India may get some understanding from the work being done in other countries, but the Indian project must focus on approaches and results that are relevant for India. Any Indian DFC project needs to be tuned to our realities, such as our demographics, diversities, resources, infrastructure, social setting, disposable wealth, etc.
- To decide what sort of contribution they want to make towards the dementia cause, volunteers should consider what sort of work satisfies them, and what is feasible given their resources, skills, funds, etc. Some may decide to work to spread awareness or create suitable resources or services for specific target audiences. Some may prefer a vaster canvas, like trying to make their community dementia-friendly, and could aim to contribute to larger sections of society, say a city, a state or even the country. Our society needs all types of contributions.
In the sections below, read discussions of the DFC concept, the ground realities in India, and the basis of the above key points in more detail. Also, some specific actions to consider.
“A dementia-friendly community is one in which people with dementia are empowered to have high aspirations and feel confident, knowing they can contribute and participate in activities that are meaningful to them.”
Key areas identified include involvement of people with dementia (including demographic variations), awareness and destigmatizing efforts, early diagnosis and person-centric care, and inclusion in organized activities and leisure. The environment should be such that people with dementia can contribute positively and stay engaged in community life, etc. Community systems (transport, housing, ease of navigation in the community, businesses and services, etc.) should be usable by people with dementia. Adequate home-based services are also needed.
Countries such as the United Kingdom, Ireland, and Australia have multiple initiatives for DFC; activists discuss it, share resources and execute projects for it. They survey persons with dementia to understand what they want, and they evaluate whether a community is dementia friendly. They try to attract persons who will work with dedication to make their communities, businesses, and services suitable for persons with dementia, to provide them suitable materials and guidance, engage them in discussions to refine approaches, and evolve ways to evaluate and recognize achievement of the dementia-friendly focus.
One important model, the Four Cornerstones model , identifies four aspects–place, people, resources and networks–to encourage us to consider people’s lives as a whole. We can think of the community’s overall suitability and friendliness with respect to dementia, not remain confined to health and social care.
Note that while a community can aim to become more dementia friendly, it is very unlikely that any community can claim it has achieved dementia friendliness completely. A community that shows some improvement in its dementia-friendliness may then aim higher, making its target a moving target. The phrase, “dementia-friendly community” reminds us of a desirable direction. A focus on dementia-friendliness, if designed in a realistic way and with realistic interim targets, can improve the quality of life of the people with dementia (and their families).
Looking at DFC from an Indian perspective, we can see that the current international way of approaching DFC cannot be directly applied here. There are several reasons for this; some salient ones are mentioned here:
India has several basic challenges in health care
- In India, dementia lags behind many imminent health concerns: India is still grappling with problems like infant and maternal mortality, infectious diseases, and other health care challenges problems which rob the society of productive/ potentially productive members. For example, death due to communicable, maternal, neonatal and nutritional causes per 100,000 persons in 2012 was 253 in India compared to 31 in the USA and 29 in the UK. , Dementia, a barely known medical condition found mostly in the elderly, is not a priority in India.
- India is not as “grey” as richer countries: Currently (2015), the 60+ age group in India is around 8.9% of the overall population, compared to around 22% in high-income countries. Like the rest of the world, India is greying, too, and conditions that are prevalent in old age will also increase; however, this is not as immediate a problem here as it is in richer countries.
- Existing systems to provide basic health care are not satisfactory: Health care services are not reliable and wide-reaching enough. They are not effective enough. They therefore are difficult to enhance to reach and support persons with dementia.
Current systems, services, and infrastructure in India (such as physical spaces, transport, and social communities) cannot be amended easily to be made dementia-friendly.
- Many basic social and infrastructural problems need attention: A significant section of our population is extremely poor and has great difficulty meeting basic living needs. They don’t have access even to clean drinking water and sanitation. Many are below the poverty line. Areas like this obviously take priority.
- Current city infrastructures, services, transport, etc., are often unfriendly even for normal ability persons, and far worse for persons with physical or cognitive problems/ disabilities. India does not have a satisfactory layer of well-functioning entities that can be enhanced to additionally achieve dementia-friendliness. Our villages and cities need to reach some basic standards of infrastructure first. Definitely, Indian cities are nowhere near meeting the core features of age-friendly cities (see the World Health Organisation guide: ).
- Accountability is missing and expectations low. There is an overall lack of accountability, checklists and standards for service providers. For example, there is very little checking or oversight of old age homes, nursing services, etc. No authoritative body checks the claims made by service providers regularly. In India, persons with dementia often stay confined at home because of multiple social reasons. Given this, a business entity gains no marketing advantage and no social goodwill by becoming “dementia friendly”.
Many foundational requirements of the DFC concept are missing in the dementia domain in India
- Voices of people with dementia and of caregivers are often not available. Systems to capture such voices are missing. As a result, concerned persons working in the domain may have to make assumptions about what sort of systems and support are suitable for persons with dementia. But these concerned persons may not have enough exposure to the nitty-gritties of the impact of dementia on the person and family, and this may affect their ability to envisage what is useful.
- Dementia awareness levels are pathetic and stigma high, forming a shaky foundation for DFC implementation. India is a vast country, relatively low in resources, and with very diverse profiles. Awareness campaigns can only succeed if designed for the characteristics of various target segments, such as language, culture, religion, literacy levels, geography, urban-rural, and so on. That requires creative campaigns and development of suitable material . There is currently no major national campaign to spread awareness or to tackle misinformation, myths and stigma.
- Early diagnosis is very low in India. The biggest benefits of DFC are for persons who can engage in a meaningful, productive life and are in relatively early stages of dementia. But timely diagnosis is very low in India, and this situation will continue unless dementia awareness and health care capacity and reach can improve.
- Providing well-designed person-centred care is very challenging in India. Person-centred care requires competent health care professionals, good support systems, multi-disciplinary teams, well-established protocols, and so on. India is very far from achieving these. Currently, our health care systems are stretched and crowded. Worse, even though there is a tiered system(primary, secondary, tertiary), persons who feel they are not getting the attention they need sometimes bypass a level and go directly to specialists; this adds to the crowding.
- A good DFC needs to be inclusive of all sections of society, but this is tricky in India. Most dementia initiatives and most volunteer work do not cater to such inclusion, and tends to favour the richer, more educated persons in major urban centres.
Pioneering work has been done in DFC in the state of Kerala. Kerala has the highest greying population, and hence will be most impacted by dementia. The Kerala initiative is an excellent example where the state government and various local bodies have joined hands to improve dementia awareness and create better support for dementia. Links to a published paper on the DFC approach as well as a description of the Kerala project are available in the resources section.
The extensive governmental involvement required is clearly reflected in the initiative’s description in the Brent report, such as:
To stimulate comprehensive community awareness of dementia the government has launched multiple ambitious initiatives simultaneously, which range from equipping all health and social care personnel with the necessary care skills to launching vast numbers of volunteer groups at the gram panchayat level (small town/village self government) whose role is to take care of those showing symptoms of dementia.
These can form good starting points for someone looking at ways to start DFC initiatives in other states of India.
Contribute to some area of the dementia domain that need improvement. Broadly, these are improving dementia awareness, and supporting dementia diagnosis and care through services, products, community building, etc. Work can be done as large projects or small, through part-involvement or fulltime involvement. Creative projects or technology-based projects can also be done.
Try to select areas where an improvement will result in more direct support for dementia, or get more people involved in the cause. For example, if you want to improve awareness, focus on segments more likely to face dementia like seniors clubs. Or on professions that are more likely to be contacted or used by families with dementia will help more, such as doing awareness/ training programs for health care persons. Similarly, consider increasing awareness of persons providing important services, such as the police force, transport services, security staff in localities, etc.
Several ideas on what you can do are available in this section: see the full section menu here or the list of pages at the bottom of this page.
Design and implement a comprehensive project that aims to make a specific community more dementia-friendly. This is an ambitious project and needs coordinated, well-planned efforts of multiple stakeholders and large resources and funds. It is a long-term project requiring high commitment. In case you are examining this option, here are some suggested steps:
- Study DFC concept papers and implementation discussions. Examine all the elements, especially elements often ignored in India, such as gathering opinions and needs of persons with dementia. Consider what each element may involve. For example, to gather voices of persons with dementia, you need to locate them, design surveys to capture their thoughts, and analyse the results to derive the specifications of your DFC. For each element, consider the effort and resources required. Make conscious decisions about which elements may be part of your DFC project.
- Study the Kerala project in detail to understand how DFC can be attempted in India. In addition to reading the links in the resources section, contact ARDSI (see ardsi.org) for more data on its Kerala experience.
- Study the community in which you want to implement DFC. DFC implementation relies in part on a reasonably effective basic health care system, so study your community’s general care systems, urban planning, infrastructure, education levels, poverty, levels, etc. Can you achieve your target levels of dementia-friendliness given this current starting point? If not, what needs to be done, and are there persons working in these areas? Look for funding and donation being done in these areas. Consider how you can integrate discussions of DFC in these. This will affect the scope of your DFC project.
- To locate potential beneficiaries, connect with active ageing initiatives and also places where persons with cognitive decline are easier to locate and engage. Understand their context and experiences, and think of ways to retain their quality of life even after they start experiencing symptoms of dementia.
- Based on all your studies and surveys, and a clear idea of the resources and skills available to you, design a scope and approach suitable for your community. Identify potential stakeholders and project partners and sponsors, engage them, and get their commitment. Together, plan the project. Define suitable timelines for implementation, gather and train persons who will help, and get started.
- During your exploration you may realize that a comprehensive DFC project is too large or impractical to handle. If so, select one or two specific ideas that can help and execute them as planned projects instead (as suggested above)
- Periodically review the progress of your DFC project and refine. Use suitable, specific criteria to measure project effectiveness.
- Share your project experiences through blogs, articles, papers, etc., so that others can benefit from your attempts and do better when they attempt their own similar projects.
The resources/ references used for the document include:
Population ageing data: World Population Prospects: Key findings and advanced tables, 2015 Revision (UN) and Profiles of Ageing 2015
Some additional readings:
- An article by Dr. Sridhar Vaitheswaran that uses an example and explains why we need dementia-friendly communities and how they would support persons with dementia and their families. Also, discussion on what this involves: Why do we need Dementia Friendly Communities
- A UK perspective as a set of presentation slides: Dementia friendly communities that know how to help
- Some discussion on residential living: Designing residential environments for living better with dementia
Pages in this section:
Ideas for dementia-related volunteer work: Resources: If you want to help caregivers/ spread dementia awareness
- Understand dementia and care in the Indian context
- Action Areas to Contribute to, and Possible Approaches
- Community-level work: A Dementia-Friendly India
- Focus: Improve Dementia Awareness
- Focus: Create Dementia Services and Products, Facilitate Support Forums
- Project ideas for students, artists, and others