Dementia Awareness in India: What level is it at?

Many people working for dementia are sure that awareness is much better now — but they only have anecdotal data and personal impressions to support it. My own impression about dementia awareness in India is less optimistic. I think awareness has improved in pockets, and stayed the same or got worse in others. I also think that a lot of misinformation is spreading along with information, and that the negative impact of misinformation could partially offset the positive impact of good information.

This post presents my initial thoughts on how we can understand where our society stands in terms of awareness of dementia.

For a while now I’ve been asking around for are surveys or studies to gauge awareness levels in India. I have not found any recent studies that measure awareness. I have also been told that surveys cost money and resources. (One study I found was way back in 2009, the link of which is at the end of this post).

India is a country of diversities. There are rural areas that are difficult to access, there are urban slums, and there are luxurious apartment complexes in metros. There are the highly educated, the functionally literate, and the illiterates. India has many languages, and though many Indians know more than one language, many are not literate or fluent in more than one. There are abjectly poor persons living with extremely poor infrastructure, and there are advantaged persons who don’t even know that many families struggle for basic sanitation and clean drinking water.

How can any study, any research, get at least enough data from all these segments to obtain a sense of what is going on? Here are some initial thoughts I have.

Firstly, awareness is not important in itself. It is not an isolated goal. Awareness is important because it affects coping and behavior when a problem is faced. When there is zero awareness, persons facing the problem do nothing about it. When a society is fully aware about a problem, the solutions are so clear and available that we don’t have to bother about awareness at all–awareness is all-pervading.

Our concerns and actions to improve awareness and outcomes are because we are in between these two extremes.

Everyone working in the dementia domain agrees that awareness is very important. But people differ in how they perceive the current status, the direct efforts being made to improve awareness, and how effective they feel they are in helping families cope with dementia.

We need a realistic idea of the current levels and the progress in the level of awareness, because:

  • Awareness data helps volunteers know the effect of their work. It helps them to channel their efforts better to achieve what they want.
  • Awareness data provides a better basis for attracting volunteers and funds.
  • Awareness data can be combined with data on diagnosis and family experiences to get better insights on how to get more early diagnosis, and to make life better for families living with dementia

Surveys on awareness require a lot of resources and are time-consuming and therefore cannot be conducted very frequently. However, in between exhaustive surveys, other indicators may be used to assess the trends in awareness levels more regularly. Broadly, I propose that analysts consider the following:

  • Information-seeking behavior of families facing problems. As awareness increases, information-seeking from reliable sources should increase. Trends in information-seeking behavior are one indication of trends in awareness.
  • Available information, its quantity, quality, and reach in relation to various segments of society. Awareness in any society cannot exist without information being available. Hence, the trends in information availability can point to the trends in awareness.

Below I explore these in some more detail.

Information-Seeking Behavior

When someone shows dementia symptoms, the person and the family may respond in different ways.

  • The symptoms are ignored (old age), or feared to be stigmatizing and hidden
  • The symptoms are not seen as “dementia” and information is sought from sources that are unreliable
  • Information is sought from sources where these is chance of getting reliable help, like doctors, helplines, organizations related to dementia, searching books and the Internet, memory clinics, etc.

Data on some information-seeking behavior is free and publicly available (such as google trends, Wikipedia page reads) or is available as statistics issued by some organizations (like helpline usage, memory clinic visit records, website usage statistics of larger websites). This data can be studied for trends and also correlated to demographic factors.

For example, an analyst can see if a website’s visitors come more from one geographic region or another, or how they grow. Or they can see if the Google searches for a certain phrase have been going up over time. Or if a helpline is getting more calls now than earlier.

Availability of Information

Awareness cannot increase without correct information being available in multiple forms. If awareness has to be increased in a segment of society, persons in that segment need to have access to correct information in formats that they can understand and use. Even if information is available, persons may not think of hearing/ watching/ reading it, and information may have to be “pushed” on them in order to make them realize it is useful.

There are many possible forms of information. For example, printed information–articles in newspapers and magazines, books and comics, pamphlets, flyers. Information broadcasted over radio and TV ads and programs. Entertainment, such as movies, street plays. Programs conducted for information, like awareness talks at community centres, walks, etc. And online sources like websites, apps, forums.

There are also many other resources that can be approached, like doctors, helplines, memory clinics.

We can view pieces of information using various criteria, such as:

  • Is the information in a format that the target audience can understand? What does it assume in terms of literacy, language and comprehension skills, accessibility, etc.?
  • Is the information reliable and useful?
  • Is it just a teaser, or is it practical and usable? Is it clear or can it be misleading?
  • Is the information presented in a way that the target audience will be exposed to it naturally (like radio or TV ads and programs, movies, street plays)? Or is it only visible to those actively seeking it (like buying books or approaching a doctor)? How much effort does someone need to put in to get the information?
  • How visible and persistent is the information?
  • Is the information free or does it cost something (like a paid workshop)? Is it affordable, and cost-effective?
  • Does the information reinforce stigmatizing depictions of dementia? Does it contain confusing or wrong information on symptoms, progression, treatment, etc.? (If so, the effect is negative)

Such criteria can help us gauge the usefulness (or harm) of pieces of information in terms of impact on awareness.

Take, for example, a printed English newspaper article. A printed article may be visible for only one day (when the paper is new), is of use only if seen by an English-reader who spots it, reads it, and understands it. The percolation of information through such an information piece is different from that of a TV ad played between a popular program or a radio ad aired between news programs or songs. Or consider a memory clinic; though this is a good source of authentic information it is used only by persons who know they should go there and who have the time and resources to visit it.

We can combine the estimated usefulness of pieces of information (a quality measure) with the quantity of information available (and how it is growing). This will give us a sense of how these facilitate improved awareness.

Fortunately, a lot of data is available free online, such as detailed demographic data, available articles, readership and viewership trends, income and spending patterns, projections for these, and so on. Some armchair analysis using public data, models, and maybe small surveys, can therefore provide insight about dementia awareness level and trends. This could supplement larger studies, but even otherwise, it would help us understand ground realities and gaps better. Volunteers can then decide where to focus efforts.

I may explore this in future posts. Meanwhile, I would love to hear your thoughts on this post. Please do share with others who may be interested.

Referred to above: The only paper I have found so far, a much-quoted paper by Dr. Amit Dias et al on treatment gap, based on surveys in Goa and published in 2009: Closing the treatment gap for dementia in India

I have several blog entries where I discuss awareness, but here are some links to posts that could be particularly relevantif you found the above discussion interesting:

If you like this post, please Share/ like this post using the buttons below.
You can also follow this blog by getting email notifications; click the “Follow me” option at the bottom of the right sidebar. Thank you!

About Swapna Kishore
I'm a writer, blogger, and resource person for dementia/ caregiving in India. I have also been a dementia caregiver for well over a decade, and am deeply concerned about dementia care in India; on this blog I share my personal caregiving journey, my experiences as a resource person for dementia care, and musings on life, aging, dementia in India, and such sundries. More about me and the work I do for dementia care. For structured information on dementia, for discussions, tools and tips on caregiving issues, for resources in India, and for caregiver interviews, please check my website http://dementiacarenotes.in (or its Hindi version, http://dementiahindi.com). For videos on dementia caregiving (English and Hindi), check the youtube channel here.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s