Living with Dementia, awareness, images, stigma, quality of life: a perspective from India

Every September, those of us whose lives have been changed by dementia find ourselves introspecting about the environment around persons with dementia and their caregivers. We find ourselves building up hopes that in future, the dementia and care situation will have more dignity, an improved quality of life, and more support. Years of being the main caregiver for my mother has made me deeply concerned about dementia awareness and care in India, and I, too, ponder on these issues.

A few weeks ago, I saw a report that discussed how many existing “frames” used to depict dementia are negative/ unproductive and how alternate frames should be used to depict a positive picture and convey the nuances. Then, as I was still piecing together my thoughts on the matter, I realized that the theme for World Alzheimer’s Month 2012 is “Living together”. Alzheimer’s Disease International also plans to release a report on the stigma aspect. I look forward to seeing that report.

(BTW, for those who unsure of the relationship between dementia and Alzheimer’s : dementia is the name given to a group of symptoms, and Alzheimer’s Disease (AD) is the most common–but not the only–disease that causes dementia. Most dementia-related work is done under the Alzheimer’s umbrella by associations with names that include the word Alzheimer’s (but may not include the word dementia), a nomenclature that sometimes confuses and ends up excluding those non-AD dementia caregivers who assume the material/ advice will be AD specific 😦 )

Meanwhile, I’d like to share have some thoughts, mainly on how dementia/ care experiences are influenced by the culture and images around dementia, how countries differ, and some lessons for the concerned persons, especially my peers in India. These are just my personal thoughts, not an expert opinion nor a “report” based on any “study”…

…and I’d love to hear your thoughts, too.

I see persons with dementia as major stakeholders in any dementia-related strategy. We already have millions of persons with dementia who try to navigate their lives in spite of the disadvantages dementia imposes, and we have millions of caregivers who try to understand and support them (but don’t always manage to). Medicines and research are also important, of course, and must go on in parallel, but medical research cannot be the sole focus. A world without dementia is pretty far off, because hey, we have millions with dementia already here amidst us, right? Also, current medications are few, not applicable for many diseases that cause dementia. These treatments work on some persons but not others, have side-effects for some persons, and do not reverse dementia. It will take years of intense and sustained research to create enough effective and safe cures adequately tested on humans.

In the meantime, many people continue to “Live with Dementia”.

So I really like this year’s theme: Living with dementia. I like the fact that it focuses on people, on their situation and surroundings, and shows sensitivity to the discrimination and stigmas they may be facing. Living with dementia seems like a wholesome focus. Not struggling with dementia, trying to “defeat” it, or “surrendering” to it or “giving up” or being seen as “negative” or “lacking faith.” Instead, accepting what is there, working with what can be done, focusing on improving quality of life, retaining connections, leading enriched lives to the maximum possible extent.

Dementia care cannot depend just on medical support. It cannot even depend solely on the institutional infrastructure available; most of dementia care occurs in home settings. The care therefore depends a lot on the environment around it: the combination of images and stories around dementia, such as how society perceives the symptoms, the conventions for interacting with people showing such symptoms, the available body of caregiving knowledge, perception of the role of doctors and medication, and so on. Published caregiver manuals and guidelines are only a fraction of the environment around dementia care; the overall environment combines multiple factors like culture and religion, information available in articles, credibility of sources, newspaper depictions, depictions in fiction, mythology and movies, the history, and the societal conventions of how elders and people behaving strangely and differently are treated.

Oh, and also on whether that society even acknowledges such persons openly or whether it expects families to hide them away 😦

Let’s consider the dementia journey, which typically spans years, even a decade or two.

A typical dementia case develops slowly; one may even say that most types of dementia sneak insidiously upon the person. Changes often happen so gradually that they may not be noticed. Initial symptoms are mild, even if troublesome. Perhaps the person wonders and worries about what is happening. Perhaps the family wonders, too. But how high is awareness of dementia? Are those symptoms seen as possibly being caused by a disease, or are they considered normal ageing, or even viewed as unreasonable cranky behavior of an elderly person or worse, as insanity? Can the person talk about his/ her problems without fear of discrimination or stigma? Can the family? Can they approach a doctor for help? Or are they safer socially if they hide the symptoms, and hide the elder? Will people ostracize them, criticize them, refuse to marry anyone in the family, even refuse to employ them? Will they curse the family and suspect their motives?

The doctor’s response again depends on the awareness levels and culture. Do doctors know of dementia? They may know it theoretically, but when they see patients, do they listen? Perhaps they laugh it off as ageing, or suspect psychiatric problems and suggest a counselor. Their insensitivity or ignorance may mislead or intimidate the family or the patient who may decide not to approach any other doctor/ specialist. Maybe specialists are better informed, more sensitive, and more likely to diagnose correctly, but the primary doctor may not direct the possible cases to the right specialist facility.

In case there is a diagnosis of dementia, how is it conveyed? What image does the family/ patient have of dementia, and what image does the diagnosing doctor convey? What happens when the person with dementia and the family return home; what changes for them? Is that change helpful and enabling, or does it dismay and alienate? How do friends, relatives, colleagues and neighbors react? How do systems around them –the office the person works in, the club, the neighborhood, the tax department, banks, legal systems, etc.– respond? Can the person continue with his/ her job, continue to drive, or is the person instantly deemed incompetent and deprived of all that? Does the person who now has an official label of dementia have the additional burden of proving his/ her competence in every sphere of life for things he/ she was doing naturally till yesterday?

In cases where diagnosis never happens, the tragedy of a family living with dementia continues for years, in an environment devoid of appropriate care because of ignorance about possible medicines and suitable caregiving tools. Unhappiness, bitterness, isolation, misunderstandings, possibility of harm, all are part of this tragedy.

In cases where diagnosis happens, if the environment is negative towards dementia, then the diagnosis kicks off a discrimination that continues for years. While there may be facilities and support, this stigmatizing adversely affects the care and the quality of life of everyone involved, and the earlier the diagnosis, the longer this discrimination lasts.

The incidence of dementia is increasing because of increasing life expectancy. Dementia impacts multiple lives. Anyone could find himself/ herself as either having dementia or being a caregiver for someone with dementia, and that could mean you, dear reader. Even someone who has gone through years of caregiving can encounter it again, either as patient or caregiver for another person. I’ve even heard of persons diagnosed with early-onset dementia while they are already caregivers for elders with dementia–a double whammy, indeed. So, understanding what is involved in living with dementia, understanding the environment around it, the support or discrimination/ stigma–these topics are not merely academic discussions; they is important and immediate.

As per my understanding, the dementia care situation varies widely across countries. Yet there are commonalities, and also common objectives. I think we all want persons with dementia to have wholesome lives with dignity, and we want the same for caregivers. The question is, are we moving in that direction? And also, can we learn from each other’s experience to make sure that we achieve this?

In some countries dementia awareness is very high, requests and campaigns for funding and research are active, and powerful images are being used to convey the urgency and tragedy of the problem.

On the plus side, this “push” for dementia (typically more focused on Alzheimer’s) results in better funding for dementia, in formulation of strategies and policies. Lay persons and medical professionals are cued to recognize symptoms. Early diagnosis is more likely. There are even more programs for protecting/ helping persons with dementia, such as for problems like wandering. There are more support systems and facilities.

On the minus side, media reports and expert-speak in such countries may be emphasizing the helpless, negative aspect of dementia. Posters may show persons with dementia as having vacant looks, and literature/ interviews often use phrases like “fading away”, or the person “not being there any more” or they infantilize the person. Dementia symptoms progress over time, yet the negative images conveyed by the images often focus on the more severe problems seen in the later stages, pandering to fear and dramatizing the more tragic elements instead of seeing the person as a whole, seeing him/ her as the person is in the present. Such demoralizing depictions could cause friends to distance themselves and also cause persons with dementia to lose confidence and further withdraw.

As a result of this over-negative and extreme way that dementia is depicted, most people view dementia/ Alzheimer’s Disease as an end to any meaningful life or existence, and dread it (even saying things like: I’d rather die/ it would be like death). This negative hype is so high that if a person returns from a visit to a doctor with a diagnosis of dementia (or “probable” Alzheimer’s) it is possible that the person will overnight start getting treated as a zombie-in-the-making, a non-person, someone fading away, or already absent even when present (she’s not quite there, you know).

A while ago I read a husband’s lament of how his wife was excluded from many normal activities almost overnight after her diagnosis; he found it so unfair that he wondered whether she’d have been better off undiagnosed. (I’ll add the link in case I locate the article again).

I mentioned a report at the beginning of this post. This report, “I am still the same person: An invitation to communicate differently about Alzheimer’s disease and related illnesses” (available at this link) described how many of the images and phrases used to depict Alzheimer’s (in European countries) have a negative impact on persons with dementia. The report suggests more effective, positive frames that could improve the quality of life of persons with dementia.

But let us spend some time looking at another type of image and stigma, which can be seen at other side of the dementia awareness spectrum.

Dementia awareness is abysmal in some countries. In these countries someone clearly suffering from dementia can be laughed at by a doctor who says the person is crazy or bored and lazy after retirement or is just getting old so what’s the big deal, why can’t the family look after him? And even if the doctor mentions the word Alzheimer’s, the patient and family will look blank, be unable to pronounce the word, or say, isn’t that a foreign disease, or say, oh, that’s just memory loss, everyone gets it with age, so why call it a disease.

India is one of those countries where awareness is extremely poor. Not many people in India have a mental image about dementia or Alzheimer’s Disease (outside small circles in major cities who are close to volunteers in this field). We are yet to create, in the public mind, a widespread vivid depiction of what dementia or Alzheimer’s mean, beyond a vague “memory loss” phrase.

The nature of discrimination and stigma is very different in these countries, and the approaches and solutions have to factor that in.

Let’s now pause to consider the lives and experiences of persons who have dementia, and how well others (who don’t–yet–have dementia) understand them, because such understanding is essential to find suitable ways to support and care, create suitable systems, facilities, policies, strategies, whatever.

In countries where awareness of dementia is high, many persons get diagnosed at an early stage when they can grasp what the diagnosis means and place it in the context of what they already know about dementia. They get a chance to re-arrange their lives so that their coming years pass through (relatively) smoothly.

And some persons with dementia go a step ahead; they talk about their experiences of living with dementia. It is an act of extreme courage for such persons to not just cope with dementia but also describe their experience.

From such persons, we obtain first-hand accounts of what persons with dementia can do, what they find difficult, what they want, what works for them, what doesn’t. They describe situations where they may have seemed normal to others but were actually facing extreme disorientation and even panic. What’s more, we have a range of such first-hand accounts, some shared in public, others in closed forums where persons with dementia connect with each other, and with caregivers and concerned persons. A few names that spring to mind: Dr. Richard Taylor, Norm McNamara, Rick Phelps. Fortunately, such voices are increasingly being heard by policy makers, and the sensitivity to negative portrayals of dementia derives in part from the dismayed and frustrated responses of persons who know what living with dementia actually is like.

But where, oh where, is the voice of persons of dementia in India? Where is the modality to diagnose people early enough, to understand their experiences and needs directly from them (as relevant in the Indian context), and then include their feedback in policy or while designing support systems?

We don’t even seem to have enough caregivers who speak up or are heard….

Problems are pretty basic in some respects in India; even our vocabulary fails us. We have no word in Indian languages to convey that dementia symptoms occur because of physical diseases. Doctors explaining the diagnosis in Hindi could end up using the word “pagalpan” (insanity) or “sathiyaana” (odd behavior after the age of 60), focusing thereby on the odd behavior while ignoring any underlying irreversible and progressive brain pathology. Naturally, there is more stigma, more shame, more hiding. People say things like: This family has a crazy woman; we will not talk to them, we will not marry anyone from the family, because it must run in the family. OR, this old woman says she is not given her meals, her family must be mistreating her, they claim she is unwell as a ploy to grab her property, elders never lie, so the family must be mistreating the person…

Last year, I met a doctor who worked with the poor in urban slums and she told me that no family admitted to having a dementia patient, but on the other hand, a suspicious number of elders had vanished from public view. They stayed inside their homes and never stepped out.

I have been trying to help dementia caregivers in India for the past few years. In almost all cases, diagnosis happened in mid-stage dementia (often after some alarming incident like a wandering/ getting lost problem). By this stage, the patient was unable to grasp the impact of the diagnosis (especially because he/ she never knew of dementia before the diagnosis anyway, and had no pre-existing framework to fit the diagnosis into). While family members learn to understand the patients and try to help, their knowledge of what the person is undergoing is based on observing, speculating, and projecting.

I await the day when patients in India will be diagnosed early enough to understand what is happening and also be in an environment conducive for sharing their experiences openly…

My mother had dementia. When she received her diagnosis, she resisted it. Her image of dementia was that of the usual English word image: demented behavior, crazy behavior, unreasonable behavior. There was no awareness of dementia around us at that time. My mother translated it mentally as “pagalpan” and even told me angrily, “main paagal nahin hoon!!” (I am not crazy). She felt threatened, judged, scared. She thought this was a ploy to defame her or take over her property. I was clueless on how to handle her fears and denial (this was well over a decade ago, BTW). While I did have some idea of what she was undergoing, she did not want to share it with me or others.

How different would our lives have been if our environment viewed dementia in a matter-of-fact, empathetic, wholesome way? Surely things would have been different if society accepted dementia as an alternate way some people end up navigating the final years of their lives–not because they have gone selfish/ crazy and are unreasonable and mean, but because the irreversible damage in their brain is affecting various spheres of their lives? How would a patient handle life after diagnosis in such an environment? Not by hiding or denying, I assume, but by sharing their problems and seeking support to the extent they needed, while also expressing their needs and opinions…They may need support, but they would be confident of getting that support and not feel self-conscious about their problems.

Which brings me back to the aspect of stigma…

Stigma is not an intrinsic property of a condition; it is related to the perception about that condition, and therefore extremely context- and culture-dependent. But here’s another thought, I think stigma comes from misunderstanding and underexposure, and a sense of distance and otherness. While some countries have a situation where the stigma comes out of lack of even knowing dementia exists, others are facing a stigma situation because depictions of dementia have been too vividly negative and imbalanced.

My primary arena of concern is India.

I think we are at a relatively early point in developing our dementia approach and strategy. In a connected world, while we need to be careful of not falling for a one-size-fits-all approach, we nevertheless have the advantage of learning from the experience of others. When we look at countries far ahead of us in dementia awareness, we must see how they improved awareness and also study what we need to be careful about. The fact that there is a stigma attached to an Alzheimer’s diagnosis in some countries can be a cautionary tale for us in India.

Hopefully we can get a more effective campaign the first time around 🙂

The challenge is to create awareness with a sufficiently-nuanced depiction of dementia that can be understood and not “missed in translation” by the public we seek to inform. Yes, persons with dementia have cognitive decline. No, they are not helpless in everything, not right from day one. No, they are definitely not “absent.” Yes, they may need support for some things, and more support on some days, and more support on an average in the later years. That does not mean they can or should be dictated to. Like all individuals, they have their own characteristics, likes and dislikes, and no one should presume to behave like their manager or act patronizingly. Yes, sometimes they are angry or helpless, but then, can those without dementia claim they’ve never felt that way? And please, they are not babies.

While we may have suggestions and guidelines on how to depict dementia in caregiver manuals and various papers and reports, the implementation of these guidelines rests in the hands of individuals (media, volunteers, experts) who are also influenced by their social setting, direct experiences, knowledge, and biases. If a reporter does not have exposure or knowledge about the range of experience of dementia, this naiveté/ misinformation could lead to ineffective or misleading representations, even if the person is sincerely trying to do a good job and also trying to apply available guidelines.

It is human nature to be instinctively wary of anyone we consider “different”, as the “other”, and most knee-jerk reactions to otherness need conscious effort to overcome. So long as the exposure to cases of dementia is low, dementia will remain alien, depicted using simplistic images that are emotionally gripping and…potentially unfair.

Guidelines are helpful because they consolidate best practices and equip well-intentioned persons with relevant data. We need them. But we need much more to reduce biases. We need proper exposure and sensitizing. Once people are exposed to a range of dementia experiences, with multiple textures, their way of talking about it is more likely to be balanced. Dementia coverage will then become mainstream and natural, and is not likely get sensationalized.

I think all people whose life has been touched by dementia will have to do their bit. We have to open up and share our truth, and let the ripples spread into waves. Our experiences shall reach others living with dementia. It may also help those who want to report on it or need to portray it in articles, movies, stories, whatever–after all, if a moderate section of the population has dementia, then realistic depictions of society must necessarily include realistic depictions of persons with dementia.

I believe “living with dementia” can be integrated into natural living by reducing/ removing the sense of “otherness” associated with it. We can do this by ensuring that people with dementia are seen, heard, and understood, not just for their challenges and problems they face but also for their humor and love and gentleness and most of all, their courage as they try to navigate life in spite of the dementia disadvantage. Once we allow others (who know very little about dementia) to see a more complete and unbiased picture of dementia, we may be able to secure enough space and respect for those living with dementia…

…or so I hope.

I’d love to hear what you think.

[Edited on Sept 18, 2012 to add a few links that some people suggested may be related:

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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:

One Response to Living with Dementia, awareness, images, stigma, quality of life: a perspective from India

  1. Thank you for sharing. If you want your loved one to remain in your home but need help during the day while you work or take care of other responsibilities, day care for Alzheimer’s patients is the perfect choice. Your loved one will benefit from socializing with others and participating in expressive therapy and recreational programs.

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