Dementia Awareness in India: Some Recent Observations

Some days ago, I was asked whether dementia awareness had improved over these last few years in India. Not an easy question to answer, for two major reasons. One, I don’t socialize much, and most people I end up meeting are people I know because I am a caregiver and a volunteer in dementia care — obviously a biased sample. Two, even when I do get to meet other people, I don’t really go around surveying them to understand the level of dementia awareness.

But I do have some recent anecdotes to narrate –  all these instances happened in the last few months.

Earlier, when I met people outside my dementia care circles, I would not mention my caregiver role in any detail. All I’d say was that my mother needed care. This was because I found most people uncomfortable with any mention of illness, and anyway they did not understand dementia. Even a factual statement from me about what occupied a large portion of  my life was enough to make them start avoiding me, as if getting pulled into a caregiver role is contagious.  But for the last two years, as I have increased my blogging and my volunteer work in dementia care, if someone asks me what I “do”, I say I am a caregiver and that I also do volunteer work in the area of dementia care. This has led me to some of the experiences that I am sharing below.

I have qualified in engineering and management from reputed institutions, and worked in well-known organizations before starting my own consulting practice. So there are people who expect me to be a “professional” and whom I meet in various alumni meets. It was in one such alumni party that I met a high-profile social worker, whom I shall call ”Cee”.  A person in the mid-50s, with a family that included parents and elderly in-laws, Cee spends most of the time helping some big volunteer organizations with their strategy, getting them funding, doing  advocacy – things like that.

Cee and I got talking, and I tried to understand more of what Cee was doing. I was asked, in turn, about my own work and career, and I explained that I was a dementia caregiver and volunteer. Cee looked blank at the word “dementia.” So hey, I have practice on this, and I gave Cee a very simple explanation of what dementia was. Blank. I gently pointed out that, as Cee lived with four elders in their seventies and eighties, and probably knew many others in that age group, perhaps this could be relevant, because otherwise Cee and family could mistake early stages of dementia with normal ageing, and thus miss the window where treatment was effective. Also, there are reversible dementias.

Cee was polite, and made the usual, social comments, but I did not sense any real interest or curiosity. I was a bit disappointed; to me, Cee was the profile that needed to be aware of dementia  — because of age, living with elders in high-risk age groups, and because of Cee’s social work background.  But I reminded myself that dementia is probably not appropriate party talk, and we exchanged e-mail ids and moved on to the food tables.  We sent each other emails later, and I repeated a few basics of dementia and gave links in case Cee wanted to read up more, but I got  a feeling that Cee felt that dementia was irrelevant to Cee’s personal situation, and just another sphere of social work.

At the next alumnus meet, I encountered another person (let me call this person ”Dee”). When, at introduction time, I mentioned that I was a dementia caregiver and volunteer, Dee took me aside. “Tell me, if you don’t mind,” said Dee. “What is the difference between Alzheimer’s and dementia?” Over the next hour, we nibbled at snacks as I explained things about dementia and answered Dee’s questions.

It turned out that Dee’s parent in another city was suffering from memory loss, often forgetting things that were told, misplacing objects, and even getting lost in the neighborhood that had been the parent’s residence for decades. This parent was living alone, and very frightened by what was happening. Dee was worried, but other relatives felt that the parent could continue living alone, and were dismissive of the wandering, disorientation, and confusion. They even dismissed it when Dee tried to connect what was happening to newspaper articles on Alzheimer’s. Dee wanted to know what the cure was.

Dee was a pleasure to talk to–very articulate, Internet savvy, energetic, curious, well-informed in general and with children and relatives in other countries, avid user of online chats and Skype. I was happy to explain, give links and suggestions, but I did wonder–if a person of such a profile and with a parent as a possible dementia sufferer  had not yet found information enough to truly understand the basics of dementia, we really have a long way to go.

Then, there is this gentleman I knew, whose wife suffered from multiple medical problems, including dementia, and finally died. When I visited him to condole, he talked at length of the medical problems–all but dementia. I commented that the dementia would have made the situation even more challenging. He looked embarrassed, ashamed. I told him my mother has dementia, and that I work as a volunteer, and only then did he open up and talk at length about the heartbreak of watching his wife’s memories deserting her.  I realized that he was not mentioning this aspect to anyone else because of some reticence; but if people do not talk about their experiences, others who undergo it think they alone are facing such problems. We are not just lonely ourselves because we hesitate to share personal agonies of dementia care, we also increase the loneliness of others when we hesitate to share.

Now over to a slightly different type of interaction. Because of my site on dementia care, I sometimes get queries from various cities. One such query I got was from a totally overwhelmed caregiver spouse of a dementia patient (and let’s call this caregiver ”Ess”).  Ess was totally tired because the dementia patient was clingy and complaining and would start desperately calling up everyone if Ess left the house for even a short while (even if it had been clearly explained that Ess would be back in half an hour). Over a phone chat that lasted well over an hour, Ess kept talking of the fatigue and stress and how unreasonable the patient was, and how Ess was near breakdown. I asked Ess about what the consulting doctor said, and whether the doctor had advised Ess regarding any support groups or caregiving skills and so on. But apparently the psychiatrist had been rather brief in the explanations, only saying “keep your spouse happy.”

I was dismayed. Ess lived in a city with some of the most active dementia support groups in India, and I had assumed that the psychiatrists in that city would direct caregivers to the volunteers and support groups that could help.

It took me a while to make Ess understand that the advisors (family, friends, neighbors) who were telling Ess to be firm with the spouse and “set boundaries” and make the spouse “behave” and things like that were all well-meaning, but probably clueless about how dementia affected patients. “You are listening to the wrong set of people,” I told Ess, and then provided links to various caregiver stories available online, and sites with tips and things. Ess was very surprised to hear that there were support groups in Ess’s city, and happily noted down the phone numbers. A couple of days later, I got an email where Ess (having checked out the links I had suggested) expressed great relief at knowing that the spouse’s behavior was common in dementia patients, and that Ess was not alone in facing the caregiving challenges and heartbreak.

This was a caregiver of a patient with a formally diagnosed spouse, in a city with plenty of support organizations, and the specialist consulted had not helped the caregiver understand what to expect, not pointed the caregiver to literature to read, not pointed the caregiver to organizations that want to help such caregivers. The entire set of caregiving advice and skills had been condensed into a mysterious “keep the patient happy.” Really!!

Shouldn’t doctors (and specialists at that) be helping spread the awareness? Shouldn’t they at least help the caregivers know that there are skills to be learnt? How are family members to guess such things? Or are doctors (even specialists like psychiatrists) themselves not quite aware of caregiving skills?

That other medical professionals do not understand dementia is something I often find.

Take, for example, a dentist I consulted for my mother recently. This was a senior dentist, with a couple of impressive post-graduate degrees. As elders form a significant part of the patients of a dentist, I expected the doctor to know about dementia, but he was unfamiliar with the words dementia and Alzheimer’s. He told us he had never met a dementia patient before, and as we explained it, he said it must be an extremely rare thing. Several reasons come to mind for this: family members may not be telling him the diagnosis while taking the patient to him; they may not be taking patients to a dentist as it was quite a hassle anyway; they may themselves not know about the dementia, as diagnosis in India often gets missed out.

But while I can understand that the dentist had not treated anyone he knew to be a dementia patient, why did the dentist not know about dementia? Shouldn’t a doctor whose clientele often includes elders know about dementia? Shouldn’t this have been part of his curriculum or professional upgrades?

I had faced a similar problem in an eye hospital once, where my mother was being checked for glaucoma, and the technician treated her like a stubborn woman and refused to adopt the few simple techniques we told him would help her understand his instructions. It was only the very senior doctors who listened to us and amended their way of checking my mother.

Dementia awareness, hmm…I think we really have a long way to go. At all levels –  not just people who may have a relative with memory-loss at home and need to be alert, but even families where patients have received a formal dementia diagnosis, and doctors interacting with families of dementia patients.  Ignorance, shame, reluctance, dismissal, all of these are acting as barriers.

Recently, I read that people in the USA dread the possibility of Alzheimer’s. They dread this disease  more than other diseases because they know there is no cure. There is an air of despondence about it, a dread. Patients who have been diagnosed feel everyone around them is writing them off, and that there is a stigma to the diagnosis. Alert persons detect their own symptoms so early that they get scans and diagnosis done before their symptoms are visible to anyone else; they redesign their lives to compensate for dementia induced problems by using systems and supports around them, and they resent it when people see them as helpless persons, because these patients continue to have productive lives and have designed enough workarounds. They want respect and equality.

A very different world out there, indeed.

From what I have seen in India, there is as yet no widespread dread about the word “Alzheimer’s” or “dementia”. No fear or paranoia. While some people have heard the word before, most people hear the word the first time only when there is a diagnosis. Very few people seem to understand the impact dementia has on patients and their families, or that there is no cure for the irreversible forms. A few token articles in newspapers make for interested reading, but do not percolate deep enough for most readers.  Our state of awareness is pretty low.

I wish we had a way to survey and check whether awareness is growing. My perception is that the growth in awareness, if at all, is very slow; I hope I am wrong. If any of you have anecdotes to share, please do so.

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About Swapna Kishore
I'm a writer, blogger, and resource person for dementia/ caregiving in India, and deeply concerned about dementia care in India. On this blog I share my own 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 in this set of pages:

6 Responses to Dementia Awareness in India: Some Recent Observations

  1. nishi says:

    sapna i just loved your blog.its very saddening to learn that people are still not aware of this husband is diogonised with paranoid schezophrenia just recently and we have put him in cadabams rehab home at bangalore.i would surely love to become a volunteer.i will appreciate if you can give me some info regards this.god bless.

    • swapnawrites says:

      Thanks for dropping by, Nishi, and sorry to hear about your husband. Hope his quality of life improves with help of the rehab. Have sent you the information directly. Take care, Swapna

  2. Rummuser says:

    Wow! I can relate totally to your frustration about lack of knowledge about dementia. I have had exactly the same kind of experiences that you have had, and funnily enough in alumni meetings besides other forums.

    In India, these problems have not become such panic generating diseases because we still have family ties to take care of patients with dreaded diseases like MS, Alzheimers, Dementia, etc. I have known three families who had patients with Alzheimers and many more with MS and what those family went through behind closed doors is not pleasant reading.

    I was involved for over a year with the MS Society’s Pune chapter as its Hon. Secretary and I was given that responsibility primarily because members knew of my care giving experience with my late wife. I found that the emotional price that I was paying was too high and it was affecting my care giving to my wife, and withdrew when an opportunity presented itself. Like most of these, what I call Tea Party societies, the society takes on a life of its own and the purpose is lost and I could not stomach that. As I write this, I am still a mentor to one MS patient and one paid employee of the Society as some of the other patients that I was involved with, have luckily passed away to the relief of the families.

    You write well. Thanks to WAC?

    • swapnawrites says:

      Thanks for dropping by. I am glad my blog resonated with you; it confirms my determination to keep at the job of trying to spread awareness. We have a long way to go…

      I totally understand what you mean by societies taking on a life of their own and losing the purpose. Happens at too many places. Which is why we need more individuals working, staying in this field out of personal conviction and determination, without feeling we must be part of a setup. Amazed to see that you continue to help people, even though after so many years of caregiving, it must take a toll.

      Re my writing: no, WAC did not help at all. Got a ‘D’ in that, one of the two ‘D’s of my college life (the other was Power Engineering)

  3. Kalpana Malani says:

    totally agree with doctors not having a clue about handling dementia patients. My experience with a top hospital in Mumbai renowned for it’s nursing care was traumatic I had to take my mother out of the hospital against doc’s advice. My mom was admitted as she fell after a seizure and had stitches for a cut on the head. I kept telling the nurses to approach her gently ,tell her what they were going to do and then do the BP check etc. Inspite of this she was handled so poorly she started to cringe everytime someone in a white uniform came in. The ECG was a total disaster after great coaxing and me holding her hands to reassure her the machine ran out of paper and I out of patience!I finally marched upto the RMO and told him that only absolutely essential tests were to be done as the staff would not be able to handle my mom. Finally I realised my mom would be better served with a nurse and me at home than in a hospital. I can still hear mu mom pleading with me to take her away from there and I have vowed not to put her thro’ such agony again.

    • swapnawrites says:

      Hi Kalpana,

      Thanks for sharing. Yes, hospital visits are so traumatizing, no? I sometimes wonder what hospitals are good for if they cannot handle patients who need them. For someone with dementia, a hospital setting is anyway alien and alarming, with all those smells and voices and people, and the patients are disoriented because they are away from the familiar home setting and their daily routine. These people need more gentle care. But often we encounter insensitive, untrained medical professionals who don’t have the required communication skills…

      My own experience, and the experience of some other caregivers I know, is that patients often need a “recovery” time after returning from every hospital visit. I’ve even known one case where two hospitals told a family to take a totally uncommunicative and seriously ill dementia patient home (to die) and the lady, once back home, slowly started improving and was able to connect to her family again (to the extent a dementia patient can).

      This is not the way things should be…


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