Has your loved one with dementia been doing less and less? Maybe they used to cook, or garden, or help with the bills, and now they wave it off. And when you gently push, or when they try anyway, you hear something like, “Ugh, I can’t get anything right,” or, “I’m just stupid now.”
If that sounds familiar, you’ve probably already asked yourself the question a Careblazer brought to one of our support rooms this week: is this just dementia taking away the motivation to do things? Or does he know he’s struggling, and that’s why he’s stopped?
Both are real. But they are not the same thing, and they don’t call for the same response from you.
Two Very Different Reasons for “I Don’t Want To”
When someone with dementia pulls back from things they used to do, caregivers usually land on one explanation: apathy. And apathy is real. As dementia progresses, many people lose the drive to start or finish things. They can sit for hours and not need much stimulation. They’re not sad about it. They’re not fighting it. The motivation is simply gone.
But apathy isn’t the only reason someone stops. There’s a second, quieter reason that gets almost no attention: they know something is wrong, and they are struggling, and stopping is how they protect themselves from feeling that struggle over and over again.
Those two things can look identical from the outside. A withdrawn person, a task left unfinished, a “no thanks” to something they used to love. But one comes from a brain that has lost the drive to engage. The other comes from a person who is still very much engaged, and finding it too painful to keep failing in front of themselves, or in front of you.
This Is Not the Same Thing as Anosognosia
If you’ve spent any time on this channel, you’ve probably heard me talk about anosognosia. That’s the clinical term for a lack of awareness that anything is wrong at all. Someone with anosognosia genuinely believes they can still drive, still manage their medications, still live alone. They’re not in denial. They’re not making it up. It’s a neurological symptom, and no amount of arguing, convincing, or reasoning will change it.
What I want to talk about today is something close to the opposite. There are people with dementia, especially in the earlier stages, who don’t have anosognosia. They know something is off. Even if they can’t name it, even if they’d never say the word “dementia” or “Alzheimer’s” out loud, they can tell that things aren’t working the way they used to. They’ll say, “What’s wrong with me?” They’ll say, “I just can’t get anything right.” That is awareness. That is the opposite of denial.
Why Awareness of Struggling Happens Even When Awareness of Dementia Doesn’t
This is one of the more surprising things I’ve learned in my years working with families: someone can lack insight into their diagnosis and still have real insight into the fact that they’re struggling. Those are two separate systems in the brain, and dementia doesn’t always take both at the same time or at the same rate.
Research on awareness in Alzheimer’s disease backs this up. Studies looking at insight in Alzheimer’s and mild cognitive impairment have found that awareness isn’t all-or-nothing. A person can have poor awareness of their diagnosis while still noticing, moment to moment, that a task isn’t going the way it should. It’s not a contradiction. It’s just how the brain compartmentalizes insight as dementia progresses.
So if your loved one is doing less and less, and especially if you hear self-criticism when they do try, that’s a real clue. It’s telling you they still have some access to how they’re performing, even if they can’t step back and connect it to a diagnosis.
Why This Is So Painful, Even Though It’s Quiet
Imagine something you’ve always been able to do without thinking. Something that came easily, maybe something you looked forward to. Now imagine it stops working the way it used to, and you can feel it happening in real time. It would be hard for anyone. And most of us, over time, would stop putting ourselves in front of that feeling. We’d do it less. And then less. Until we’d stopped.
That’s what’s happening for a lot of people with dementia who withdraw from things they used to do. It’s not always that they’ve forgotten how much they loved painting, or gardening, or cooking. It’s that they remember exactly how much they loved it, and they can feel the gap between what it used to be and what it is now. That gap is where the world starts to shrink.
A Painter Who Stopped Painting
I once worked with a man who was, genuinely, a phenomenal artist. Not a hobbyist. His paintings hung in galleries. They sold for thousands of dollars. His home looked like a museum.
As his dementia progressed, he lost the fine motor control that his paintings depended on. His brushwork changed. The precision wasn’t there anymore. He tried anyway, got frustrated with himself, and eventually stopped altogether. I was brought in as a psychologist because his family, understandably, was worried about depression. It made sense. One of the biggest parts of his identity had just stopped being available to him.
What helped wasn’t convincing him his old paintings were still good, and it wasn’t pushing him to keep trying at the level he used to work at. It was finding a different form of the same thing. We explored finger painting and large-brush work, where fine detail wasn’t the point. We didn’t frame it as a simpler version of “real” art. It was just a new kind of art, worth exploring on its own terms.
What he actually landed on, and stuck with, was adult coloring books. They still had plenty of detail in them, but because it was a different art form entirely, he didn’t carry the same crushing standard he held for his studio work. Every time I visited, he’d pull out a folder of his newest pages. It became something he genuinely looked forward to.
That’s the shift worth aiming for: not lowering the bar on the thing they used to do, but finding a version of it that lets them succeed at where they are now.
What Helps in the Moment
Offer Genuine Compliments
Not empty praise, but specific, real acknowledgment of what they did do. This matters more than it sounds like it would, especially for someone who is quietly aware they’re not performing the way they used to.
Ask for Their Help, Even When You Don’t Need It
Giving someone a task, even a small one, and thanking them for it afterward gives them a chance to succeed at something on their own terms, without the pressure of matching an old standard.
Adapt the Activity Instead of Ending It
Before deciding a hobby or task is over, ask whether there’s a smaller, simpler, or different version of it that could still work. A loved one who has stopped doing the things they used to do hasn’t necessarily lost the desire underneath it. Sometimes what’s needed is a new form of the same activity, not a replacement for it.
Watch for Depression Underneath
Frustration and withdrawal can also be a sign of depression on top of dementia, and depression is treatable. If you’re noticing sadness, hopelessness, or a loss of interest in almost everything, please bring it up with their primary care provider. Treating depression can genuinely help someone’s thinking, not just their mood.
You Don’t Have to Carry This Alone
Watching someone you love pull back from the things that made them who they are is one of the quieter griefs of this journey. It doesn’t always come with a dramatic moment. It’s a hobby that gets set down and never picked back up, a task handed off a little at a time, a “no thanks” that used to be a “yes.”
Inside the Care Collective, this is exactly the kind of thing we talk about. Not just what’s happening in the brain, but how to actually respond in the moment, how to sit with the grief of watching someone change, and how to take care of yourself while you’re doing it. You can learn more about the Care Collective here.
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