Do People With Dementia Know They Have It?

Family caregivers often have questions about dementia and awareness. Do people with dementia know they have it? Are they aware of the changes that are happening in their behavior and mind?

There are two big reasons why you might ask this.

The first relates to how much the senior is suffering. Seniors who are aware of their condition might be struggling with it much more than those who have no idea there’s something wrong.

The other relates to whether some behaviors are intentional. It can certainly look like the person with dementia is ‘putting it on’ or at least exaggerating their symptoms for effect.

For example, they might be confused and frustrating when you’re trying to help then, yet magically seem normal at the doctor’s office (a practice known as show timing). Or, perhaps the people with dementia seems to know the worst time to ‘be difficult’ or how to hit all your buttons.

So, how much does a person with dementia actually understand?

Do People with Dementia Know They Have It?

First off, there’s no single straightforward answer because dementia awareness varies based on a variety of factors.

The Stage Matters

First, where a person is on their dementia journey makes a big difference. At the early stages, seniors may have some awareness of their dementia and have a sense of the changes occurring in their capabilities.

This ability often decreases as the disease progresses.

That makes sense, doesn’t it?

After all, dementia is literally changing the brain and our brains are how we understand the world. How does a person know that something is wrong when their very perception of reality has shifted?

As a result, you might find that a person is aware of their limitations for a while, but this starts to fade. The senior may even become insulted and argumentative if you suggest something is wrong with their capabilities.

This means that, at any given time, a person with early stage dementia is more likely to be aware of their condition than one with late stage. Even so, a person in the late stages may still have periods of awareness and one in the early stages may have some points where they’re not aware.

Timing Matters

As the above point shows, awareness also varies over time. This means that a person with dementia will sometimes understand their condition but won’t at other times.

This is often the result of something known as anosognosia, which refers to lack of knowledge about their condition.

With anosognosia, a patient may genuinely have no idea that they’re declining. They may even think that they are as fit and functional as ever – and perfectly capable of living on their own.

This is very different than someone denying their disease out of fear or embarrassment. Notably, because of how dementia impacts the brain, anosognosia-based shifts in awareness aren’t within the control of the person with dementia nor their caregiver.

There’s another important note too – people can shift in and out of dementia confusion extremely fast. They may be fine one minute and a complete mess the next.

This doesn’t mean they’re faking. It’s actually how the condition presents for many people.

The Cause of Dementia Matters

Dementia isn’t actually a disease. Instead, it’s a term for a set of symptoms that influence the mind, cognition, and ability to connect with others.

While Alzheimer’s disease is the most prevalent cause of dementia, there are many other causes, some of which are reversible.

The various causes are notable, as the cause influences the specific symptoms and the way that dementia progresses. Some causes and presentations of dementia may keep people aware of the condition longer than others. The various causes also affect behavior in different ways.

Notably, a senior with a rarer form of dementia may present differently in some areas than someone with Alzheimer’s disease. This can be confusing if most of what you know about dementia relates to Alzheimer’s disease.

The Person Matters

There’s also a lot of variation from one person to the next. Some people retain awareness of their condition much longer than others.

Wendy Mitchell is an example of this. She was diagnosed with young onset dementia in 2014 at age 58. She has since written three books and maintains a blog titled Which Me Am I Today?

Her book What I Wish People Knew About Dementia is particularly interesting, as it showcases what dementia can look like and feel like from the inside. Despite being diagnosed with dementia almost 10 years ago, Wendy retains enough awareness of her condition to be able to write about it.

She isn’t the only one, either.

There are other advocates with dementia who retain knowledge of their condition, along with regular people who keep some awareness.

The level of awareness may vary based on the person’s exact diagnosis, how the condition progresses for them, their intellect beforehand, and a variety of other things. Such differences make it impossible to predict how much a person will understand about their condition and how this will change.

Why Do Dementia Behaviors Seem Intentional?

In most cases, a person with dementia isn’t intentionally being difficult. As we’ve already seen, they probably don’t know that they have the condition or how it affects them.

Even if they’re sometimes aware of their diagnosis, they may not have this awareness at the time of their difficult behavior. Or, they might not realize that their sense of the world is ‘off’ at this moment.

So, why does the behavior look intentional? There are a couple of reasons to consider.

Non-Verbal Communication

When a person has dementia, their ability to understand and respond to spoken communication decreases over time. This makes non-verbal communication crucial for connecting with late stage dementia patients.

This pattern highlights another important point – people with dementia understand non-verbal communication. This means that they see and respond to changes in your body language, your facial expression, and other cues.

As such, they’re likely to sense when you’re stressed and overwhelmed, and then react to that stress. This can mean that they start to feel stressed and agitated themselves, leading to difficult behavior.

This is a frustrating situation for caregivers. The more stressed you are, the more likely the senior is to be difficult (which may increase your stress and lead to a re. Remembering that the behavior isn’t intentional may help you to be calmer and less reactive, which stops the situation from spiraling. 

Our Own Biases

Humans are masters at story telling. We look for stories and patterns everywhere, often reading much more into situations than is realistic.

Because of this, it’s easy to ascribe intent to a person’s behavior, even when there wasn’t any intent present. Plus, once that story is in place, it’s easy to notice everything that supports this theory and ignore everything that doesn’t.

The issue is especially significant with seniors who were manipulative or unkind in the past. It’s easy to fall into the pattern of thinking the worst when you were right in the past.

Can People Fake Dementia?

While the behaviors you observe are generally the result of dementia, there is the chance that things are not as they seem. Let’s look at a few possible situations.

‘Playing Up’ Dementia Symptoms

If a person was playing up their dementia symptoms, this would likely happen in the very early stages, before dementia was having a noticeable effect on cognition.

After all, for a person to fake their dementia behavior, they’d need an awareness of reality. The further their condition progresses, the less of this awareness they’d have.

Could a person with dementia do this? Theoretically, yes, especially if they were manipulative earlier in their life.

Still, it’s important to remember that dementia is a scary diagnosis and people respond in many ways. Even if the person is playing up their symptoms to a degree, this doesn’t mean they’re being cruel. They may simply be adjusting in their own way.

No Dementia Diagnosis

Someone highly manipulative or narcissistic could theoretically pretend to have dementia and use this to their advantage. This would be most likely for people who haven’t been formally diagnosed with dementia.

While the situation is possible, there’s still the question of whether anyone would actually fake dementia.

After all, the condition leads to all kinds of embarrassing behaviors (including incontinence) and faking the condition would require a considerable amount of work. Plus, people with dementia tend to lose independence over time, as they’re no longer capable of making decisions for themselves.

Faking dementia would also require a considerable understanding of the condition and dedication to their craft. Even seniors who live on their own would need to carefully set up everything to make their fake illness appear authentic.

Is there much to be gained?

Most people out for themselves are likely to take a different approach that gives them more power.

A Misdiagnosis

There is also the case of pseudodementia. This is where a person’s cognition is slowed by another condition (like depression) to the extent that they appear to have dementia. The effects may even be strong enough for the senior to be diagnosed as having dementia.

In such a situation, addressing the underlying cause could lead to improvements in symptoms and a return to normal.

However, it’s important to note that a person isn’t faking in this situation. They’re still experiencing dementia-like symptoms. It’s just that the underlying cause is different.

This is a crucial reason to talk to doctors regularly and look for symptoms that seem out of place with a dementia diagnosis.

Final Thoughts

Do people with dementia know they have it? The simplest answer is that they may know sometimes, especially early in the progression of dementia. However, as dementia has an increasing effect on the brain, awareness of the condition tends to decrease.

Some people maintain awareness of themselves and dementia for much longer than others. Yet, even here, they may lack awareness in the moments where dementia is dramatically impacting their behavior.

For caregivers, it’s best to act out of a place of grace.

This includes working off the assumption that the person’s behaviors aren’t intentional. Doing so allows you to be kinder and provide better care. And, honestly, authentic dementia behaviors do look and feel intentional.