Around 15 years ago, I started sharing my dementia experiences and later began work on content creation and caregiver support. Much has changed in the dementia landscape in India in this period. I share some of my salient observations in this post. As my work has been content-creation and support, but does not include any services, my observations are likely to differ from what most persons and organizations working in dementia have.
Major changes have happened in the exposure of people to terms like “dementia”, “Alzheimer’s” etc. Almost everyone has, by now, heard of dementia or seen it in someone they know directly or indirectly. As families typically handle dementia care without expert advice or support, the impressions that society carries are, on an average, based on difficult and unsupported care situations, and without exposure to structured/ effective care approaches.
The general sense in many families is a vague (but fear-inducing) familiarity with dementia based on mostly intimidating personal experiences of peers and friends. There is often a feeling that there are no better tips and techniques out there other than those shared by people we know. This is only natural; it is the approach we use for most things. In these past years, I have seen a distinct decline in people searching for answers or tips outside their own circles. This is very different from the blank slate most families felt they were facing fifteen years ago when they heard the word “dementia”.
Another major change is regarding diagnosis. Fifteen years ago, many families did not seek diagnosis because they did not think the symptoms were due to a medical condition. Now, increasingly, families self-assign a “diagnosis” of dementia without going to a doctor. A formal diagnosis by a doctor is considered unnecessary, costly, bothersome to everyone, and no value add. In fact, many families say that the doctors they know personally also advise them against getting a formal diagnosis because “nothing can be done anyway, you just have to live with it”. They also know many peers who similarly opted against getting a formal diagnosis. Often, they have not ruled out reversible causes for the symptoms. Whether the symptoms are caused by dementia or something else, many families, lacking a diagnosis, have no access to relevant healthcare support (such as it is).
Overall, ignorance has been getting replaced by a sense of hopelessness around “dementia”. Seeking information outside close circles is low. This means reduced chance of empowerment through information and support. This trend will be very difficult to reverse without focused, well-designed, sufficiently intense campaigns created for this social reality – because every day around us more and more families get added to this pool of society’s perception of dementia.
There has been a huge uptick in the use of digital sources, especially YouTube, which is almost like a second search engine now. There is also a huge increase in use of digital in languages other than English. Mobiles are now the device of choice. This could be factored in content creation to spread awareness and effective coping more widely.
Alas, creation of structured, simple content in multiple languages, geared to and suitable for the multiple socio-economic and geographic profiles in India is not yet a focus for enough persons/entities working in the dementia domain.
By and large, work done is scattered. It typically continues to be English first/ English only, aimed at educated, upper middle class urban families – neglecting huge swathes of our population. Typically content assumes captive audiences that will reach it using keywords laypersons may never search on. It does not provide the simple explanations, hope and answers people want. In any case, as mentioned above, not too many people think there could be any improvement on what they already know.
On the other hand, there are entities and persons who are in tune with what sort of answers people want, how to make effective short videos or create viral WhatsApp messages and they are using these to reach the underserved with their own interpretations and solutions. These often include misinformation or untested techniques and ineffective or even harmful solutions. Lay persons may not always discern what is reliable from what is not.
In brief, the information and empowerment gap that needs to be bridged is, in my option, widening alarmingly fast. The societal impression of dementia described above is growing fast, becoming stronger and spreading wider and will become increasingly difficult to undo. I feel that any approach to bridge this gap cannot assume the same situation as was there over a decade ago, nor should it continue to ignore the bulk of India.
It is tough to reach people who don’t feel they need information. It requires understanding what people think and want, and tuning campaigns accordingly. A sociological understanding and use of ethical, appropriately designed social persuasion techniques is required. We have no time to lose.
Many people in the dementia domain focus on services and this will benefit families who are currently unable to find suitable help. But there is a large population of affected families that cannot or will not use services for various reasons. In any case, even at its most optimistic, services can only be accessible and affordable to a very small segment of the one crore or so of the families affected. We need to explore beyond providing services to find approaches that provide information and relief to the vast majority of families. Note that even the few families who use services will typically only do so after years of trying to cope themselves at home, often without diagnosis, without information, without support, and without knowing that some perspective shift and some tips could make a major difference.
These are just some of my major observations, but I feel they are concerning and would love to hear your views.
Swapna writes... 