For those concerned about dementia and caregiving in India

The poor state of dementia awareness and caregiver support in India continues to alarm me, but I also fear that many persons who can improve things are not doing so because they think that the required actions will be taken by others at some grand, country-wide level, often by the government or major NGOs.

I think that is wishful thinking and not dependable.

Choosing to make one area a national priority means choosing to pay less importance to some other area. Realistically speaking, not everything can be a priority. In a country like India, struggling with multiple basic problems in areas like health, education, law and order, infrastructure, etcetera, I have no basis to expect that dementia will be made a “national priority”. Surely child mortality, primary health care, basic sanitation, farmer support, poverty eradication, reducing school drop outs, and many, many basic causes are already contending for, and deserve more national attention, funds, and priority.

I keep encountering persons who expect the government to solve the problems faced by dementia caregivers. They expect the government to ensure hospital care and better diagnosis, set up multiple respite cares and day cares and memory clinics, have special wards in hospitals, etc. Alas, it’s not going to happen in a hurry. Dementia activists may talk themselves hoarse labelling dementia as an “epidemic” but I’m sure activists in other domains–domains like AIDS, cancer, diabetes, heart problems, child prostitution, malnutrition, and so many others–have their own catchy phrases which are as alarming or more. They, too, have compelling and visible statistics to support the use of such phrases–and often have more persuasive pictures, case studies, and statistics than what dementia experts can churn out.

In my opinion, it may be reasonable to expect and lobby for some basics that facilitate dementia diagnosis and care, like including dementia-related criteria in guidelines/ checklists for senior citizen related services/ homes, including dementia in curriculums of professions like medicine, nursing, adding dementia in illnesses for which concessions are available, subsidizing adult diapers.

But it seems unrealistic to expect the government to set up special, well-equipped day care and respite care centres for dementia when girl students are dropping out of school because schools have no basic safety or even toilets. And someone even suggested to me that the Government should set up “dementia villages” of the sort shown in these articles: Inside an Amazing Village and Wikipedia entry on Hogewey. Well, I can’t even begin to explain how unrealistic and unfair that expectation is…

So to me, this means that for anything beyond broad directives/ policies related to dementia, we have to depend on NGOs and on what we, as individuals and corporates can do. And we need to acknowledge that the number of persons willing to do work is very low, and therefore being effective and focused in our efforts becomes very important. My contention remains that the root to improvement is awareness. Ideally, I’d have liked some large, funded and committed organization to work on a well-designed awareness campaign, but I don’t want to succumb to the temptation of abdicating responsibility and waiting for the “they” to do this. Let’s all do our bit anyway. Maybe things will pick up.

Another thing that worries me is the danger of expending effort in areas that are not yet relevant in India.

The problem is that some of us, even those who know ground realities, get very attracted by discussions in esoteric circles of dementia activists from developed countries. We forget how much foundational work needs to be done in India before we can afford lofty dreams. We forget that, in India, we have yet to establish a foundational understanding of dementia, and our overall quality of life and social support and welfare schemes is not good. How can we justify aiming for a quality of life of dementia-affected families that is grander than what is normally found around us?

Sure, concepts like “dementia villages” and “dementia-friendly communities” are progressive, the “in” thing, and provide a more satisfying area of work compared to mundane problems like drafting caregiver material and making it available in multiple Indian languages. But can already-scarce experts afford to spend time and effort on serious and detailed discussions on such advanced topics when we have not yet discussed how to ensure that doctors know how to diagnose dementia?

Persons discussing futuristic and currently-inapplicable-in-India concepts often point out that the discussions will also result in more awareness and after some initial discussions, they will adapt the concepts for India and their work will include awareness type of basic areas. My concern is that most initiatives lose steam and run out of funds very soon. We therefore cannot squander initial momentum on discussions that will not result in improvements to those suffering from the pathetic state of affairs.

From what I have seen, this digression into currently-irrelevant concepts is a consequence of three factors:

  • Volunteers/ experts are often part of a vibrant world-wide community that discusses advanced applications and ideal situations with impressive and inspiring quality-of-life criteria, and hence these volunteers/ experts get drawn into professionally enriching dialogs and heart-warming concepts
  • They don’t pause to think that taking up one project of this sort also means not being able to take up some other project they could have done instead, and
  • They do not have sufficient, day-to-day contact with actual caregivers and patients and therefore are not personally inconvenienced by the ground-realities. They don’t, at an inner, emotional level, appreciate the day-to-day struggles of families coping with dementia. This distance means they do not experience an urgency to tackle the most pressing and immediately relevant aspects first.

Awareness is so poor that there is no way to tap the bulk of actual, hands-on caregivers. Besides, caregivers come in various stripes; the ones who most need help are not visible, not tapped, not participating in most dialogues. Patients who need the most help are the ones locked up in houses because of social stigma, or who remain undiagnosed or are labelled as crazy and shunned. So where are their voices, their concerns, their perspectives on what they need most and fastest? Where can we find persons diagnosed early enough to have insight into their dementia who may share their realities so that we can know what “friendliness” means to someone who actually has dementia? Don’t their opinions matter?

Yet I am not sure that locating persons with dementia and their hands-on family caregivers, and then listening to them, is considered as something to do before deciding what needs to be done first. I’m not even sure it gets due importance while actually working on grander projects.

Here’s what I feel: we need to get real about the situation in India if we want changes to benefit persons who need help.

We need to accept what we can expect from the government. We also need to accept that many things are pointless and unfair to expect. We need to honestly acknowledge the real status of families touched by dementia, across all economic and social status, across all geographical locations–not just upper middle class English-speaking families living in larger cities in some states.

Furthermore, we need to set aside expectations driven by international conventions and not let our priorities get warped.

Let me get this right: I am not saying there is anything intrinsically wrong about working on advanced concepts. I am saying, when resources are so scarce, then anything we pick up has an opportunity cost: something else that those resources (experts, time, corporate funds and goodwill) could have been used for remains undone. That is why we have to be careful in what we choose. If we had more volunteers, more experts and abundant resources we could have taken on projects of all sorts–both for providing basic dementia support, and for discussing advanced concepts that are not currently usable. But we have a severe shortage of people and resources in the dementia domain. We don’t have the foundation for advanced and ambitious projects like a “dementia-friendly community.”

Let’s at least reach a state when, if a family approaches a doctor, odds are that they get appropriate guidance. Or when a patient is taken to an emergency room, staff understands how unnerving this all must be to someone with dementia and knows how to be considerate. Let’s make information available in Indian languages. The list of such basics is a long one.

There’s another aspect: each contribution can help.

With so much that needs to be done, surely each concerned person can find some way to contribute? Especially as we know that there is no “they” who will wave a magic wand. Even as individuals, we can help others and add to the overall betterment of the dementia care environment. For example, we can help a caregiver by running some errands or providing a respite. We can talk more openly about dementia and improve awareness, making dementia and its care challenges visible. We can generally be more proactive and participative when sharing information and ideas. And maybe some of us have the time and energy to take up larger projects, work more visibly, share thoughts and ideas and aim for making a bigger difference.

So if you are concerned about dementia and caregiving in India, please think of what you can do for people whose lives have been, or may be touched by dementia. They will have a smoother ride because of your actions. And it’s not as if you are safe from dementia in the future; your life may be touched by it again. Actions you take today based on your concern could even help you in the future.

Related post: I had shared my thoughts on the importance of dementia awareness earlier, here: Need for well-designed dementia awareness campaigns

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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.

3 Responses to For those concerned about dementia and caregiving in India

  1. dementedgirl says:

    Hi there,

    I am a fellow caregiver and just came across your blog.

    I have been a young(ish!) carer for my mother-in-law, who suffers from dementia, for the last three years now.

    I am in the process of creating a new poetry site primarily aimed at carers, but also people with dementia as well – http://dementiapoetry.com.

    The blog is an honest account of my experience of caring over the last few years in poems – some silly, some exasperated, some happy, some sad – of my last three years caring for my mother-in-law, who suffers from Alzheimer’s disease, and is aimed at helping to support other caregivers in a similar position.

    DG x

  2. sanchita prabhakar says:

    I feel this topic needs a platform to disseminate information. Its not enough that we publish articles. We have to include assessment techniques as a routine and programmes like Satyamev Jayate can promote this topic.
    The MCA act has to be implemented on a regular basis to empower patients and carers in making decisions regarding treatment, finances and support.

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