I first learned the term “anosognosia” (pronounced uh-naa-suh-now-zhuh) when I was studying the DAWN Method.  It made an immediate difference in the way I viewed folks living with dementia, and the care that I provided for them.

Anosognosia is the “lack of ability to perceive the reality of one’s own condition.”  (Healthline.com; Tim Jewell; 2/27/2019).

As described in the article in Healthline, anosognosia is a problem with the brain; a failure of the brain to accurately perceive oneself.  It occurs commonly with those with dementia, stroke, or mental health issues.  It is not a problem with the person, but a problem with their brain.  Meaning they cannot change the fact that they lack the ability to perceive the reality of their condition.

But understanding this one term, this truth, could make a big difference for our folks living with dementia.

I encounter families regularly who believe their loved one is in denial about their dementia diagnosis.  Well-intended families who believe that “the truth just needs to be told to mom or dad; we just need to force them to get help; they are just being difficult and stubborn.”  The reality, though, is that they are losing the ability to accurately see the truth about their abilities.  

Every one of my companions with dementia have a sense that they are losing ground cognitively.  Given a dementia supportive place to share their thoughts, they will share that they suspect something is wrong with their brain, maybe even suggest that they have dementia.  But none of my companions with dementia have an accurate awareness of what this means for their day-to-day.  They are unable to make the connection between diminishing cognitive skills and the need for help or support.

Which means that those of us with healthy brains need to understand anosognosia and be compassionate and patient.   It also means that our approach should be one of “caregiving by stealth” so that our companion with dementia does not lose their sense of integrity, self-respect, or autonomy, in the process of needing an increasing level of support.  

But caregiving by stealth is another topic for another day; a topic so important that it deserves its own post.  For now, just know that your loved one with dementia cannot accurately perceive that their brain is changing, so let that be an impetus for all of us to approach them with compassion and empathy.  

An advocate for the brave folks living with dementia,

Jill