Anosognosia: My Loved One Doesn’t Think She Has Dementia
The conversation goes about the same way every time. We are sitting in front of a panel of doctors at a university research lab. They have just done hours of testing and are now telling my mother she has early signs of dementia. They tell her she should probably stop driving. Or we are at her primary care office and they ask her if she has any problems living alone. Or we're in front of her neurologist and she can't recall the words he told her to remember five minutes ago.
"I'm fine," my mom insists, over and over. "I don't feel there's anything different about me." My mom doesn't think she has dementia. She seems offended that anyone would even suggest she has memory problems.
I was confused by her behavior and assumed Mom was in denial. After all, this was earth-shattering news that challenged a way of life she had happily lived for over 70 years. Her ability to live independently was being questioned. It makes sense that she would push back.
Not always denial
After that initial diagnosis of mild cognitive impairment, I threw myself into research about the disease and came across a possibility for my mom's confusion. Scientists call it anosognosia, from the Greek words meaning "to not know a disease." I practiced saying this word that now defined part of my mom's disease: "uh-no-sog-NOH-zee-uh."
According to an article from the National Center for Biotechnology Information, anosognosia is a "condition in which the patient is unaware of their neurological deficit or psychiatric condition."1
The authors clarify that "anosognosia differs from denial, a psychological defense mechanism that involves avoiding or rejecting information that provokes stress or pain. With denial, the patient may acknowledge a deficit but minimize its consequences and avoid treatments geared to remedy the deficits."1
On the other hand, people who suffer from anosognosia are genuinely not aware of their deficits.
Problems for caregivers
This lack of awareness is very common with dementia. Researchers found that 60 percent of patients with mild cognitive impairment and 81 percent of patients with Alzheimer's dementia appear to have some form of anosognosia.1
It is a perplexing issue for caregivers. Especially in the early stages, their loved one with dementia can put on a good show and not let on at all that they might be having issues. They might make excuses for symptoms or refuse treatment. It might delay a diagnosis and possibly put them or others in danger.
It can also deceive well-intentioned physicians and other care providers who trust that their patient is telling them the truth, when in fact they might be unintentionally concealing important information about increasing challenges or dangerous living conditions.
Managing anosognosia as a caregiver
It helped me to understand that my mom really did not believe she had any problems. Understanding more about anosognosia shaped the way I provided care to my mom.
One place to start: don't keep reminding your loved one that they have dementia. You can address symptoms and provide structure and safety, but it is unhelpful and frustrating for everyone if you keep trying to convince them.
It takes some leg work to provide Mom structure but it helps balance the anosognosia and Alzheimer's. Because she doesn't believe she has any issues, when she stumbles finding a word or can't remember where she is going, she gets upset and agitated.
She and I rely heavily on predictable schedules, visible calendars, and setting reminders on her phone. Patience and compassion from caregivers are key. Take a break if it becomes too much for you.
Instead of "quizzing" or "testing" her, I try to help while still respecting her independence. She is not a child and there is no harm in giving hints or the actual answers. I prompt her with names multiple times before someone comes over. In a conversation, I fill in the word she's looking for right away so she doesn't have to feel frustrated.
Anosognosia and Alzheimer's: planning ahead
Anosognosia requires planning ahead to accommodate for the shortcomings. Mom needs someone to attend all appointments with her because she can't fill out the health history forms anymore or she forgets what was talked about by the doctor. She needs her travel plans checked because sometimes she forgets to plan for part of the trip. Sometimes I notify people ahead of time by email or phone call that she has memory problems so they are not confused or hurt by the dementia behaviors.
Involve your loved one
One of the most important ways I try to honor my mom is by including her in everyday decisions. For example, she loves gardening. Because she doesn't drive anymore, it would be easier for me to buy all the supplies on my way past Home Depot. Sometimes I have to do this for convenience's sake.
But ideally, I get to take her to pick out the plants herself. She gets to think through which plants will fit where, color coordinating, and height requirements, but most importantly, she gets to feel like she still owns her own life.
Focusing on what mom can still do
Anosognosia, compounded with Alzheimer's, causes confusion and irritation when patients are reminded of all the things they cannot do anymore. I try to focus on what Mom can still do and what she loves and help her with the rest.
Which, if any, of the following most often trigger agitation in your loved one living with Alzheimer's disease?