Have you heard your loved one who’s living with dementia say something like this?
It’s frustrating when someone you love who’s living with dementia insists that they’re fine, that their cognitive abilities are completely intact, and that you’re the one who (choose the argument of the day) can’t do anything right, doesn’t remember how things are supposed to be, keeps insisting there’s a problem when there isn’t one.
Maybe the complaint is laced with suspicion: you’re trying to convince everybody that I’m crazy or you’re trying to confuse me or you’re trying to trip me up.
When you’re the care-partner or caregiver devoting your time and energy to making things go well for the person you love who’s living with dementia, this is an frustrating claim.
I knew that my dad’s dementia had progressed to the point that he couldn’t safely walk alone in our neighborhood. He might get lost or wander off his planned path, or he might not understand that cars don’t always stop at stop signs and step in front of a driver who was in the midst of a rolling stop.
And so I insisted that someone should walk with him. But because he was unaware of the danger that dementia created, he wouldn’t allow anyone to join him on his walks.
I suggested that I could walk a few feet behind him, or we could find someone he’d enjoy in conversation, and his response was like a soundbite stuck on repeat: “Why? There’s nothing wrong with me!”
I could see he needed help, but he wouldn’t admit it. It felt like a stubborn refusal or an aggressively defensive reaction to my attempts to help him.
Until I discovered that he was exhibiting anosognosia, I was incredibly frustrated and even angry that he was denying the truth of his condition.
Anosognosia is defined as the lack of ability to understand and perceive one’s condition.
In the context of dementia, anosognosia means that the person who’s insisting they’re fine truly believes they’re fine: they genuinely can’t see or recognize that their memory or judgment or ability to find the right words has been compromised.
The losses that are apparent to us as family members and care-partners are invisible to the person experiencing anosognosia.
And so what looks like stubbornness is actually a disability.
Another example comes from a member of The Purple Sherpa Basecamp on Facebook. Susan (not her real name) was aghast to discover her husband using a chainsaw to cut a small piece of lumber. When she challenged him, he told her that she was wrong, that he’d been using his tools just fine for years, that she never used them, and that he wasn’t the one with the problem—she was.
Susan couldn’t understand why her handyman husband had suddenly forgotten how to use a chainsaw properly and that he didn’t even know he’d forgotten.
And here’s the tricky part about anosognosia: no matter how much evidence you bring to prove that your loved one isn’t perceiving things correctly, there is no chance that you’ll be able to persuade him or her.
Anosognosia will eliminate any possibility that your loved one will even see that there’s a problem. The physical changes in the brain caused by dementia will prevent your loved one from recognizing that there are any changes.
It’s important to realize that, as with so many other symptoms of dementia, anosognosia may come and go over the course of a few days or even a few hours. Someone who agrees he needs help today may insist that you’re trying to put one over on him next week, that he doesn’t need help, that he never agreed to any such thing.
Knowing that your loved one is experiencing anosognosia, not just being stubborn, doesn’t change the experience you’ll have. But it just might help you to feel empathy—and that may change your experience.
If you know why your loved one who needs help is arguing that she’s just fine, you may be able to respond with empathy rather than exasperation.
Empathy can prompt you to look for ways to address the underlying issue with creativity rather than frustration.
For example, if suggesting hiring a daytime caregiver causes your loved one to get upset and swear they don’t need any help, consider telling your loved one that a friend (whom you’ll pay) wants to spend time with them. (And be sure the “friend” shows up in street clothes, not in scrubs or another type of professional caregiver’s uniform.)
If your loved one keeps forgetting to pay the bills but insists that she’s always managed “just fine” and doesn’t need your help, perhaps you could intercept the bills and pay them while leaving your loved one an old checkbook so that she doesn’t feel undercut. (This is a good reason why it’s important to be sure an appropriate person has financial Power of Attorney before it’s needed: when it’s needed, it may be difficult or impossible to get it done because your loved one may lack the legal capacity to grant the Power of Attorney.)
Even leaning into your empathy, you might find it difficult to come up with a creative approach to deal with a problem that anosognosia is preventing your loved one from seeing. A support group can be helpful in this situation, and you’ll likely pick up “been there, done that” advice. (If you’re on Facebook, check out The Purple Sherpa Basecamp, which is open exclusively to dementia family care-partners and caregivers.)
And on occasion, when safety is at stake, you may have to muscle through an anosognosia-based objection to help rather than seeking a clever way around it.
How have you handled situations when your loved one claims not to have any problems when you know that isn’t the case?
Author: Julie Fleming
Julie provided love & care for her father, who was diagnosed with Alzheimer's Disease in the fall of 2011 and with vascular dementia in 2014, until he died in 2017. And she had to learn it all the hard way. Sound familiar?
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