behavior of concern

A few days ago, I had the opportunity to discuss “Understanding Challenging Behaviour” with a number of professionals involved (or about to be involved) in dementia caregiving.

It got me thinking🙂

There is, of course, no shortage of difficult/ challenging behavior when you are caring for a dementia patient. The nature of the disease keeps the patient disoriented about time and space, keeps memories disjointed or wrongly connected, affects even basic aspects like identity and interpreting the surroundings. A patient may not recognize a close relative, let alone a carer he/ she sees every day. Everything to a patient can be a challenge, and in response to this, the patient may react with withdrawal or aggression or any of the range of ‘challenging’ behaviors.

Then, there is this concept of  “behavior of concern” which is rather simple:  not every strange/ not-normal behavior of a dementia patient needs to worry us. Every model on dementia caregiving tells us we need to focus on behaviors with serious/ unacceptable consequences. Simply put, a behavior of concern is one that upsets or harms the patient or the persons (or community) around the patient. The rest of strange behaviors can, well, be set aside🙂

So, if the patient gets angry, we must try to find out what happened, how to prevent it, or how to reduce the duration and impact of such an anger fit.  Because anger harms the patient and upsets the people subjected to it.

Or the patient withdraws, again, such withdrawal is harmful and must be studied and resolved.

Or if the patient wanders off, or tries to light the stove (and lets gas escape) or picks up the car keys and starts driving with no real idea of how to drive and where he/ she is driving…

On the other hand, take an old lady who wears her nightgown inside out. Or insists that her brother died at the age of sixteen when he actually died at 87 (or is still alive). Are these really worth correcting or analyzing? No, they are not.

Simple, right? And obvious.

Ask any group of persons gathered to discuss dementia caregiving, and everyone will agree that certain behaviors are of concern and others are not.

But, sigh! In real life, we caregivers often forget that a dementia patient will often act oddly, and not every odd behavior is cause for worry/ action. We get overwhelmed and “sweat the small stuff” and deplete ourselves of the energy needed for bigger problems.

It sounds silly in retrospect, but I often wasted a lot of energy on silly stuff myself in the early years of my caregiving. As did others interacting with my mother.

Here’s a true example of a conversation a neighbor often had with my mother, never failing to leave my mother upset.

*———*

Neighbor: My son is coming tomorrow from the USA

Mom: I miss my son.

Neighbor: Your son? But you do not have a son.

Mom (agitated): I have a son.

Neighbor: You have a daughter, not a son.

Mom: I have a daughter. And I have a son.
…(a few more back and forth statements, with both ladies getting more excited) …

Mom (points to photograph of grandson): See? My son.

Neighbor (laughs loudly): That is not your son. That is your grandson, Vipul. You are not his mother.

Mom: I am his mother.

Neighbor: No, your daughter is his mother. You are his grandmother.

Mom (almost crying by now): I am his mother.

Neighbor (now pointing out to my photograph): If you are his mother, who is this?

Mom: My sister.

Neighbor: No, this is your daughter.

Mom: I have a son. I do not have a daughter. This is my sister.

Neighbor (now agitated, loud): Why do you keep saying the wrong thing? He is not your son. You only have a daughter. Do not say wrong things.

Mom (tears in her eyes): I have a headache.

*———*

Later, the neighbor comes to me:

Neighbor: Your mother insists Vipul is her son.

I: She brought him up as a son, she has always thought of him as a son.

Neighbor: But that is *wrong*. She should know he is her grandson.

I: She has been a mother to him, and she likes to call herself his mother.

Neighbor: You should correct her. She should not say wrong things.

I: It does not harm anyone. I do not mind.

Neighbor: You should not allow this.

I: What difference does it make?

Neighbor: I believe in being truthful.

*———*

Mom: Why does that woman say I have no son? Vipul is my son. How can she say he is not my son?

I: Of course Vipul is your son. You brought him up as a son, so he is your son.

Mom: She kept saying he is not my son. She was yelling at me. Why was she yelling at me?

I: Her talking loudly doesn’t change facts.

Mom: She said Vipul is your son.

I: That is also true. He is my son, and he is your son. Right?

Mom: Actually, Vipul is your son. But he is my son.
(which means that at some level, she knew the truth and was able to say it when not being forced)

I: That is also true. Don’t worry about what she says–that will not change anything.

*———*

There are many such incidents I remember from my years of caregiving for my mother. Often, I got irritated or angry and made no attempts to hide it. Often, this was for small and silly, inconsequential things that just rubbed me wrong. As any caregiver would tell you in all honesty, all of us have felt dejected or irritated because of behavior that is odd, irritating, or embarrassing even if it did not harm anyone.

Why? Why, for example, do we get so upset (note, I say we, because I have often got upset about these things) if a patient takes so long to eat, or drops food or spits it out, or spoils her clothes? Why do we get agitated if she wears her nightgown inside out–why this need to ‘correct’ it before a visitor comes? Why this insistence on correcting it if the patient is unwilling? Why the sense of “embarrassment” because she is not neat according to the criteria we are imposing? Why this sense of failure?

And why, pray, this need to correct an obviously faulty memory in a person suffering from a disease that is often treated as synonymous with ‘memory loss’?

Here’s what I think: Caring for someone with dementia makes us face the shortcomings of our own ego, and our difficulty in setting ego aside even for compassion.

Take the problem of confabulation, where a patient fills gaps in her patchy memory by imagined facts. Why do we want to ‘correct’ such a person? Some reasons I have got after discussing this with caregivers in various forums:

  • Somewhere, there is a belief that not challenging a factually wrong statement is tantamount to agreeing to it. It is like lying, or allowing a lie to be uttered unopposed.
  • At times, we feel that someone saying something wrong must be taught what is right.
  • Or we feel that we need to demonstrate that we know the truth better
  • Or, once an argument starts, we need to win. How can we lose when we are right?

Looking deeper, I think these beliefs stem from:

  • There is only one truth, the one we know.
  • Anyone uttering a different truth must be corrected/ convinced/ argued with, or our position is challenged
  • Our ego is tied with our ability to stick by what we know to be the truth
  • Any other truth is a challenge to our world’s rightness and rationality.

And put this way, this is not about dementia patients at all. This is about tolerating and accepting that a world can contain multiple realities and perspectives. Our need to correct a dementia patient is a tiny reflection of a greater problem in our world–intolerance. And the problem of identity. We tie our sense of worth and identity with the need to be right, with the need to have around us a world that functions as per our rules.

Now imagine a world where we accept that different people think and act differently, and that they are not wrong to do so, just different. A world where we genuinely accept this, not merely for the sake of speeches and for rational arguments. Can you imagine how much of the gossip and criticism would collapse? We would save all the energy we expend trying to chop and change the world to fit our framework. Imagine the harmony between religions, between communities, between generations. All that anger, that fear, evaporated into nothingness.

So, can caregiving become our way to develop what Buddhists refers to as one of the perfections–kshanti, or patience/ forbearance? Of building what they call loving-kindness (metta) and compassion (karuna)? And so, can caregiving help us build the stamina to effectively cope with the rest of our world? Transform ourselves into better human beings, developing skills that will serve us and our community well in all situations?

Next time a loved one’s behavior stirs impatience even if it does not harm anyone, pause and think for a moment. The realization that you can just drop your reaction is incredibly liberating. And energizing.

Edited to add resource links: See discussion on “challenging behaviour” in dementia, including how to identify what is “of concern” and how to cope with it. Also, discussions on communicate with a dementia patient, and how to help them with normal activities.

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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.

4 Responses to behavior of concern

  1. Sue Bolich says:

    Is it possible that we correct such minor behaviors in an unconscious attempt to try and restore the person we remember? That if we can just get them to act “normally,” to agree to what we know to be truth, they will get well, or be, at least for a little while, the person we desperately want back?

    Acceptance is wonderful, and I try to see where behavior comes from before I condemn it, having been taught a wonderful, gentle lesson by a good friend once. But in the case of dementia, I wonder how much is driven by our own desperate desire to turn back the clock.

  2. swapnawrites says:

    I see what you mean.

    Yes, I guess we do want to restore the past rather than accept and move on, redefining relationships and ‘expectations’.

    This wanting to turn the clock back is true of so many things, like when we cling to whatever made us happy in the past, whether trying to change a person, or craving for a generous helping of rich food we can no longer digest🙂

  3. I like this post. It deals with a lot about the acceptance levels of the caregivers. I think when we stop being embarrassed that our mom/dad/sibling/friend is behaving in a way that makes others raise their eyebrows, we will learn to love the sick person. I learned to love “zarana” – my mom – I had to call her by name, because the first word she stopped reacting to was probably “mom” – ha ha! Well yea, if I now had a chance of doing things differently, I’d probably have let my friends come home…I was so embarrassed as a teenager…I still remember. And the conversation with the neighbour – ha ha! It truly means a lot to me to think that I was able to love the person who fell ill. My mom was a different person, but I loved both of them equally.

  4. Sandra Fredine says:

    This article really lifted my spirits, thank you. Since my mother’s start of her journey into dementia, I have struggled with various aspects and recently came to the big AHA! moment – as if it hadn’t been sitting on my nose begging for attention – that this is my problem not my Mother’s.

    I agree on both reasons for correcting the dementia patient which both amount to creating the illusion of normal instead of changing my paradigm about normal. Now that I can intellectually address this doesn’t mean that I can always emotionally live it…but I do try and now I have the resources to see beyond the ‘happily ever after’…Ha!🙂

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