How to deal with a mean dementia ‘patient’*
Why is my mom so angry? Why does my husband blow up when I try to explain something?”
Why does it feel like having dementia and being mean to family often go hand in hand? There is an answer—a way to avoid the anger that so often accompanies dementia—but it’s not a simple one. If it were, far fewer families would be dealing with combativeness and aggression when their loved ones develop dementia or Alzheimer’s. Like anything complex, this will take some explaining, so I’ll write about this issue of anger and meanness with dementia in a series of articles (this article is Part 1; see Part 2: Dementia Anger Stage; see Part 3: Dementia and Aggressiveness).
*(Just so you’re aware… I do not like using the term, “dementia patient.” I would rather use “person experiencing dementia,” and I do use that phrase in my books and classes. Unfortunately, people who are searching for help with dementia caregiving often default to the phrase, “dementia patient,” because they are used to approaching care from a medical perspective. I mean no disrespect to those experiencing dementia.)
The first step to having happier interactions and fewer episodes of aggression or combativeness with someone who’s experiencing dementia is to understand why they may begin treating you badly.
Who is Judy Cornish?
Judy Cornish is a former eldercare lawyer and the former owner of Palouse Dementia Care, a dementia care agency that provides in-home dementia care for people in Moscow, Idaho. She is the author of Dementia With Dignity and The Dementia Handbook as well as the creator of the DAWN Method of dementia care. Judy believes that, with training, families can provide dementia care at home and enjoy less stress and more companionship.
Understanding why someone with dementia is being mean
Does dementia cause meanness or is something else going on? The short answer is that most of us don’t really understand which cognitive skills dementia takes away. More importantly, we do not realize which skills are not lost. And so we inadvertently embarrass people and unintentionally belittle or frustrate them without realizing what we’ve done. We then find ourselves on the receiving end of a verbal or physical blow with no idea what went wrong, and their response seems unwarranted or crazy.
But think about how you feel when someone you love—or someone you expect kindness from—starts doing things that make you feel bad. None of us behave well when we feel that we’re being taken advantage of, made fun of, or picked on. When that happens, we feel indignant and angry and usually tell the other person why. Anger, aggression, frustration, and just plain meanness (the desire to hurt) result when we feel that we’re not being treated fairly or respectfully—especially if it happens over and over again with people whom we are close to or expect better from.
This doesn’t change when we begin to experience dementia. What changes is the skills we have available to work with. Dementia takes away skills we’ve been using our entire lives. And even if our companions love us dearly, their attempts to help us often make us feel worse.
It’s those losses to the person’s skills that set them up for embarrassment and feeling mistreated, and lead them to react by being mean, so the first step in resolving conflict and unpleasantness is to understand what those changes are.
How dementia changes our thinking skills
Everyone agrees that people experiencing dementia are often unreasonable. But whether I’m teaching families or professional caregivers, I rarely find anyone in the audience who understands that because dementia takes away our rational thinking skills, expecting people to use them and be reasonable or rational is no different than expecting someone who is blind to see or deaf to hear. Please think about this for a moment: if I’ve lost my ability to use reasoning, why would it be helpful to explain to me why I should do something?
It is also rare that I find someone who understands that we all have two separate and complete thinking systems—and that only the secondary one (rational thinking) is lost to dementia.
Yes, the rational thinking skills we lose to dementia comprise our secondary thinking system, not our primary thinking system. Our primary thinking system is our intuitive thinking skills. It’s misleading to think of this complex and essential set of skills as “intuition.” These thinking skills provide us with the broad and unfiltered data that our rational thinking skills sort to help us make sense of the world around us. Without our intuitive thinking skills, our rational thinking skills would have nothing to work with and we could not function.
We do not lose our intuitive thinking skills to dementia. If your companion has dementia, you can bet they are using that set of skills very well. So here is a thumbnail list of the changes to our thinking skills that most greatly affect how we react once we’re experiencing dementia—both those skills that we lose and those that we must rely on more heavily.
Our most frustrating rational thinking losses
If I’m experiencing dementia and you ask me to do something I can’t do, I’ll feel embarrassed, angry, hurt, or all three at once. It’s essential that you understand what someone experiencing dementia is no longer able to comprehend for you to avoid getting combative, aggressive, and mean reactions.
Rational Thinking Loss #1—Becoming unable to understand why.
Rational thinking skills are for understanding how, why, when, who and what—the ability to perceive relationships between facts. Dementia takes that away. So if you try to explain to your loved one why they need to do something, or what went wrong, or how to do something, they will not be able to follow you and will end up embarrassed or concluding that you’re making fun of them. Anger or hurt feelings will result. Whenever you catch yourself explaining why, stop. You’re asking them to do something they can no longer do. You’ll have pleasanter interactions once you build new conversational habits and turn your focus away from why to talking about things that are pleasant.
Rational Thinking Loss #2—Becoming unable to see cause and effect.
It’s hard to imagine becoming unable to understand the principle of cause and effect—that if this happens that will happen. All our lives we’ve known that if you drop something it will fall, if you hit someone they will react, if you step outside in wintertime you will feel cold even if you’re warm inside. Dementia takes that ability away. So when your loved one refuses to put on a coat—even though you point to the snow falling outside the window—don’t be irritated. They’re not being difficult. Expecting them to understand and comply will frustrate you both. You’re asking them to do what is now impossible for them. Just be okay with that and take their coat with you when you step outside. They’ll be happy to put it on once they feel cold.
Rational Thinking Loss #3—Becoming unable to follow sequences.
Dementia takes away the ability to keep multiple things in mind at once—especially several steps in a task. If you ask me to put on my shoes and socks and I have dementia, you are setting me up to fail. If you ask me to take a shower and put on clean clothes, you are setting us up for conflict. If you keep asking me to see that first we need to do this, then that, I’m likely to be mean to you because I’ll feel like you’re being mean to me. When we’re experiencing dementia, we need to be given one thing to do at a time so we don’t end up embarrassed or feeling taken advantage of. So, tell me only the very next step or ask me to do just one thing at a time. Ask me to put on my socks (or help me), and when that’s done you can suggest shoes.
Rational Thinking Loss #4—Becoming unable to prioritize.
This is really frustrating for everyone. People who are experiencing dementia become unable to understand why one thing is more important than another. We become unable to see why we should hurry. We become unable to understand why going to doctor appointments is necessary, or why we should postpone doing something we want to do right now because there isn’t time. So if I’m watching my favorite show on TV and you tell me it’s time to go, I won’t be able to see why I should stop doing what I’m enjoying. And like the previous three rational thinking losses, if your loved one was capably using this skill last week and now overnight is being “difficult,” it’s because that skill just became unavailable to them. No amount of explaining will bring it back.
When we stop asking people who’re experiencing dementia to use the skills listed above, we have happier interactions and less conflict. Mean dementia happens less frequently, and then disappears. We won’t ever be able to teach our loved ones how to use these skills again. But we can change our expectations to meet their abilities and change how and when we suggest what needs to be done or avoided.
In my dementia books, videos, and dementia courses, I explain the changes in cognitive skills that dementia causes in detail, with many examples of how to work with instead of against these changes. But the first step is awareness—when we begin catching ourselves asking our loved ones to use the above thinking skills.
Now let’s talk about the intuitive thinking skills they’re still using—and relying on more and more. If you don’t realize that your loved one has and is using these skills, you’ll once again be embarrassing them without realizing it, as well as unintentionally giving them negative emotional messages.
Our very active intuitive thinking skills
Focusing on the skills they won’t lose can diminish mean dementia.”
Intuitive Thinking Skill #1—Using our five senses.
Dementia takes away our ability to analyze, label and interpret, but dementia does not take away our ability to see, hear, feel, taste and smell. Age might dull our senses, but to the degree they’re still available to us, our senses will provide us with raw data (intense sensory stimulation) loud and clear—despite dementia. Mean dementia and anger result when caregivers and family members don’t realize that their loved ones are still experiencing what they can no longer describe or interpret.
Your loved one is experiencing everything around them and perceiving your emotions as much as ever (maybe more), but they can no longer remember what happened moments ago or process any reasons for why you’re doing what you’re doing.”
Think about what this means: your loved one is experiencing everything around them and perceiving your emotions as much as ever (maybe more), but they can no longer remember what happened moments ago or process any reasons for why you’re doing what you’re doing. Think of the mistaken assumptions they can’t avoid. They need us to narrate and explain what’s going on, without judgment. They need us to make sure that whatever sensory stimulation comes their way is pleasing and uplifting. They need us to do for them what they can no longer do for themselves: use memory and reasoning to avoid conflict.
Intuitive Thinking Skill #2—Feeling our own feelings.
I can’t imagine losing the ability to feel happiness or love. As I’ve gotten older, I’ve become able to accept times of fear, sorrow, and pain as essential for me to fully experience peace, joy, and love. And, even if I begin to experience dementia tomorrow and live into dementia’s final stage, I believe I will continue to experience every other emotion of our human experience just as intensely as ever, because I’ve watched my clients do it. When you are with someone who’s experiencing dementia, you need to realize that they are experiencing emotions fully, regardless of whether they can remember what just happened to make them feel that way or whether they can name the emotion they’re feeling. People with dementia continue to experience what they can no longer explain or express. They need us, their companions, to use our reasoning and memory skills to express and explain things for them.
Intuitive Thinking Skill #3—Seeing other people’s feelings.
When we lose our memory skills, we lose the ability to daydream and drift away on memories, so we cannot leave the present to spend time in the past. When we lose our rational thinking skills, we lose the ability to daydream and drift away on anticipation and planning, so we cannot leave the present to spend time in the future. To experience dementia means being trapped in the present.
When we are fully in the present, we are very observant of what is happening around us—especially how our companions are feeling. So people who are experiencing dementia notice even the most fleeting expressions and briefest gestures. Our ability to read other people’s emotions is learned young and part of our intuitive skill set; it is not lost to dementia. If you want to avoid offending, hurting, or angering someone who’s experiencing dementia, you need to become very aware of your nonverbal communications—everything you’re saying with your posture, gestures, expression, and eyes.
Intuitive Thinking Skill #4—Enjoying beauty.
Because we still receive all types of sensory stimulation when we’re experiencing dementia, being exposed to those things that are pleasing to us is very important. There are songs and sounds that lift our hearts and bring tears to our eyes. There are colors that draw us and scenes that intrigue us or bring an “Ahhh!” to our lips. There are textures and tastes and smells that enliven us. And there are those that repel us. What is beautiful to one person may repulse another. Beauty is personal, but being able to enjoy that which pleases us through our senses does much for improving our moods and lifting our hearts.
If you are spending time with someone who’s experiencing dementia, understanding the human need to have our senses stimulated in ways that please us will give you a repertoire of ready tools to dispel frustration and anger and mean dementia.
More about dementia and being mean…
Understanding how dementia changes our thinking skills is the beginning of understanding why someone experiencing dementia might be mean, and how to avoid getting aggressive and combative dementia behaviors.
But this is not a simple problem, so there’s more to think about. In my next article, Dementia ‘Anger Stage’, I’ll explain how we—the companions of people experiencing dementia—are actually in control of their moods rather than them. This is one of the key reasons for why relationships that include dementia are different from anything we’ve ever experienced before.
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Is there a better way to navigate dementia?
The odds are against you if you rely on your gut. Working with people who are experiencing dementia requires a new way of interacting. Family members and caregivers (even incredibly empathetic ones) who don’t truly understand this will inadvertently embarrass, frustrate or undermine their loved ones and clients. Learn why that is and how to navigate dementia more successfully in our DAWN Method courses and books.
