Once again, I repeat my complaint…we are still presenting dementia as if the only symptom is memory loss. If you’ve ever heard me speak, you might have been surprised at how little I focused on memory loss.

Memory loss is to dementia as vomiting is to an upset stomach. Hang with me here…

There are lots of potential symptoms involved when you say you have an upset stomach: vomiting, diarrhea, cramps, acid reflux, constipation. To only talk about vomiting when you talk about an upset stomach is to mislead people about what is challenging about having an upset stomach.

There are lots of potential symptoms involved when you have dementia: memory loss, balance, emotion regulation, communication difficulties, personality changes, issues with sensation and perception. To only talk about memory loss when you talk about dementia is to mislead people about what is challenging about having dementia.

I’m doing a bit of a series here on symptoms of dementia that may get less attention.

Today we are talking about apathy.

If you care to continue reading, that is. Or if you don’t feel like it, I understand. Doesn’t matter to me. Whatever.

Aren’t I funny?

Apathy is a lack of interest or concern. When you should care about something and you just don’t, that’s apathy. Lack of enthusiasm. Lack of engagement.

As you might expect, it often shows up with its good friend, depression. Depressed people are often apathic. They don’t care about their relationships, their jobs, their health. They can’t get excited about things that used to be fun. They can’t make themselves care enough about their hygiene to take a shower. It’s not that they’ve given up. It’s that apathy is a symptom of depression just like blurred vision is a symptom of a migraine.

I hear often times that it just seems like Grandma doesn’t care anymore. She used to be excited to go to the grandkid’s games and recital. Now she’d rather sit on the couch. Her niece got engaged. She shrugged. Her brother died. She didn’t cry.

Her family isn’t sure if she really seems sad. She certainly doesn’t seem happy. She just seems nothing.

Recently someone was in tears as they told me that their husband, who had been diagnosed with frontotemporal dementia, had wet himself while out to dinner. It was not that he had wet himself that upset her the most. It was that he didn’t care. While she worried that people around them could smell the urine, he kept eating from the bread basket. She encouraged him to go to the restroom to clean up and try to possibly dry his pants using the hand dryer. He refused.

Another person I know with frontotemporal dementia was confronted for stealing several kinds of expensive cheese from the grocery store. (I should note that impulse control issues are another symptom of dementia.) When confronted, he wasn’t ashamed. He didn’t seem embarrassed or humiliated. He told his wife to pay for the item. When she got upset with him, he didn’t understand why this was a big deal.

You can categorize apathy into three (overlapping) types:

Affective/emotional apathy–Someone experiencing this type of apathy often lacks empathy and loses the ability to show caring for others. They may not greet family members with the enthusiasm they had in the past. They’re unaffected emotionally by events that would have had a big impact them on the past. They’re unexcited by good news and unbothered by bad news.

Cognitive apathy–This means that your brain can’t be bothered to be engaged with what’s going on around you. People with cognitive apathy may not be able to initiate a conversion. Their brain just decides it’s too much work to listen, to talk, to process information. You might become frustrated that they aren’t paying attention. Again, keep in mind this is a symptom. Getting frustrated with the individual does no more good than getting frustrated by someone with lung cancer who has a cough.

Behavioral apathy–This means that people are physically able to move about and accomplish tasks…but they can’t. We all experience this sometimes, but this isn’t just a matter of overcoming a lack of motivation. For some people with dementia, this is a very real symptom that impacts quality of life. It may mean that someone who previously kept a clean house now lives with trash on their floor for months at a time. It may mean that the tasks involved in personal hygiene are just too much. Again, this isn’t a person who has given up. This is a person who is experiencing a symptom.

And that’s what’s particularly hard about dementia and apathy.

It seems like the person living with dementia just doesn’t care. And we get frustrated become they seem to have given up.

But keep this in mind. Motivation is a brain function. Their brain is failing them.

It’s a symptom of a disease. It’s not them. It’s not you. It’s part of dementia.

This isn’t just about memory.