Knowing what dementia is, versus understanding what it really means

A few weeks ago, as I was working on how to increase awareness about dementia, I realized that most people who know about dementia don’t really know about it. They can talk about how unfortunate memory loss is, and how awful it must be, but the sentences are more like quotes from articles they have read, or what they have heard. Because, a few minutes later, they slip into behavior that can be extremely stressful for the patient, or come up with suggestions that leave the caregiver scratching his/ her head, wondering how to explain it all over again.

Memory loss is one of those overused phrases. We joke about it all the time. Misplaced the car keys? Joke: You are getting senile. Joke: Maybe you have dementia. Senior moment. Whatever. Forgot a birthday? hey, you’re getting old. Grin.

So when someone says, dementia is memory loss, we assume it to be more of the same. Maybe losing five car keys? Forgetting ten birthdays? It is bad, inconvenient, but not heart-wrenching. And just as we don’t make too many concessions for someone because they misplaced their spectacles or car keys or forgot which day of the week it is, we expect a dementia patient to, more or less, be normal (except that she has misplaced her keys, poor dear, smile).

For years after my mother was diagnosed, I made this same mistake. I made allowances for memory loss, but didn’t quite understand (or try to) how memory loss could so totally affect behavior.

Then, one day, I tried to imagine her life, and that transformed me.

She gets up in the morning and stares at the ceiling, and she can’t remember where she is. She can’t remember who she is. She knows she is herself, but what does that mean? She struggles to remember, but gets back only a couple of words, faces, smells, all of her as a child. Her body feels different. She tries to get up–she has to go to the bathroom, but where is the bathroom? She has to hurry, hurry. A face appears near her bed-she has seen the person before. The person is frowning and speaking rapidly. She cannot focus. The person seems irritated. She is scared. She is helpless. The person places a hand on her and tries to make her get up. Sentences, words are tumbling out of the stranger’s mouth–they make no sense to her, but she knows that tone. It is exasperation. She wants the person to speak slowly, but she is not able to remember how to say this–her tongue does not seem to form the words it should. The person tries to hurry her; she wants to go to the bathroom, and she is frustrated. She hits out. It is the only way she has to say something.

The first time I imagined this scenario, I was shocked that I had not thought of it before. How does a person with only patchy memory of who she is, only patchy ideas of her surroundings and the people around her, navigate the world?  Awful doesn’t begin to describe how it must be.

Not quite like forgetting where the spectacles are, no?

Dementia awareness is an area that deeply concerns me. To me, it is not just rattling a list of symptoms–it is understanding the syndrome well enough to act with compassion and empathy while dealing with this person, whether as a caregiver or a friend or a neighbor.

The tragedy is, even people who have been in close touch with a dementia patient, do not grasp what the patient is undergoing. They cope with the problems, but cannot relate, and so they end up feeling tired and frustrated and used up/ exploited.

Dementia awareness is not just abut teaching people who have never heard of dementia. It is about making sure that people who know dementia patients understand deeply enough what dementia is doing to the person and affecting his/ her behavior.

Here is an example of a family that was touched closely by dementia, but remains ignorant.

An elderly lady had a series of strokes, and never quite recovered. Even after she resumed walking, she rarely spoke. Her behavior became odd–she became incontinent, and one of her children once saw her smear a wall with feces. If asked to wear a diaper, she flung it away. She fought when taken for a bath. She no longer tried to talk, and rarely listened. Often she looked blank; sometimes she accused her children of stealing her jewelry and property. She hid her money, and then accused the maids of theft.

The lady was staying with her eldest child, who was very hurt and embarrassed by the accusations. The child felt used, misused, abused, and the frustration, sorrow, and anger of caregiving reflected in the voice all the time. Finally, caregiving stressed out this child so much that the mother was moved to another child. Three children (and their grandchildren) took turns looking after this old lady; every family reached a point of utter frustration and break-down, and the mother was finally moved to an old age home. By this time, the mother was no longer communicating, not even responding. She sat without saying anything, staring in space most of the day; once in a while she would scream unintelligibly. The children/ grandchildren would visit once in a month, or once in two months, carrying along what they remembered as the old lady’s favorite food, trying to talk for an hour, and come away feeling helpless because they got virtually no response.

Of the three siblings who looked after the mother, only one remembers/ admits that the mother was diagnosed as having multi-infarct dementia. The two other siblings still talk as if the mother was strange and stubborn in her last years. These families, touched closely by dementia, have not yet accepted that the mother had dementia, that the mother was not being stubborn and difficult but helpless and clueless. They frown at the word dementia, say they don’t know anyone with it. One of them has repeatedly told me that there is nothing a bit of willpower would  not have solved.

Even the child who knew it was dementia, and who freely admits that caregiving is difficult for dementia patients, has no clue that there are defined ways to communicate effectively with a dementia patient. This child had no access to caregiver groups, no resources, and while she accepted her mother’s condition and knew it to be a loss of memory (and not stubborn, uncooperative behavior), she is clueless on how such problems could be handled.

So here we have a family that cared for a dementia patient, and faced the typical problems. Yet, the awareness of dementia remains low–two of the three families involved still do not understand what was happening, and that it as a disease. The third, while understanding this, does not know of the existence of caregiving resources.

Dementia awareness, I think, has to go far beyond making people recite by rote the list of symptoms. Those are just words. The human tragedy behind them is mere theory; it does not register. What we need is a method of having people pause, think, soak it in their hearts, so that the ways out in terms of compassionate caregiving rise from the perception. And I mean compassion for all concerned–the patient, the caregiver, everyone. Because when a patient forgets the world and can no longer recognize the caregiver, it is not just the patient who loses an identity, it is also the caregiver. And compassion and empathy would serve all well.

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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 Knowing what dementia is, versus understanding what it really means

  1. jenue says:

    Can people with Dementia forget how to speak? That’s really scary. I couldn’t imagine not being able tell someone who’s helping me bathe that the water is too hot or cold.

    • swapnawrites says:

      Yes, frightening, isn’t it? They not just forget things, they forget what they want to say, they forget words, they use wrong words (using opposites, or just irrelevant words). After a stage, they are unable to speak meaningfully, and may stop speaking altogether.

      And they can see (they have visual potential), but forget how to read, and are unable to recognize objects, or people, so everyone and everything is strange to them.

  2. austere says:

    This is scary to read. “What if its me?” the brain asks.
    That sheer terror, helplessness.Must admit for me compassion is far away.

    Write on, Swapna.

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