Dementia & Apathy

In this blog, we will discuss apathy and dementia. So statistics reveal that about 50% to 90% of people living with dementia will experience apathy. Now, apathy is not to be confused with depression, okay? So with apathy, there is this reduced interest and motivation, but the person is not necessarily depressed or sad.

Typically, when we think about apathy, especially in people living with dementia, it's oftentimes due to this impairment in voluntary action and decreased goal-oriented behavior. So what we get is really a state of indifference or absence of interest in the things around the environment, but it's not due to sadness. Whereas with depression, depression is characterized by things like sadness, desperation, and an inability to experience pleasure in the same way. With that being said, depression and apathy can coexist in the same person, but it's important to know that they are different.  

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So why is understanding apathy so important?

Studies have found that those with mild dementia will actually decline much more quickly into severe dementia if they also suffer from apathy. And I've personally seen this hold true for those in moderate stages as well. When the person living with dementia is not engaged in their environment and the people around them essentially do everything for them, their cognition and overall state of being has a tendency to decline and in a pretty significant way. and also in a relatively but also subjectively, short period of time. After all, the brain is not being adequately stimulated. When a person is apathetic, they are less likely to be curious about the world around them. They are less likely to be motivated to carry out everyday tasks or activities and less likely to engage with the people around them. They may appear to have a general lack of concern about their own problems. They may seem indifferent or careless. And like I mentioned before, their cognitive function is likely to decline.  

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This could create some unique challenges for the caregiver as well, especially if they stay in this kind of apathetic state for a long period of time. So one thing that is important to know that I try to make sure that caregivers and care partners understand is that with dementia, especially as it progresses, a person can lose their ability to initiate goal-oriented tasks. And this is often due to the damage that is done to the brain cells in the frontal lobes, which is essentially like the CEO of our brain. It's what helps us plan, organize, and sequence tasks, among other things. So sometimes when we see the person sitting around all day doing nothing, not offering to help or engage, we sometimes assume that it's because they don't want to be doing anything or they're just lazy, or they just don't care to be helpful—but that's not always the case. Sometimes they're just sitting there because they don't know what else they could be doing. The CEO of their brain is not telling them what to do. So when we understand this idea, we understand that in order to essentially break this cycle, that we have to be the ones to intervene.

So that means instead of expecting them to get up and go do things on their own, we have to be the ones to provide them with opportunities to do things either by themselves or with us. So this could be inviting them to do something with you. This could be asking them to help you. This could be setting up an activity such as folding clothes, matching socks, or sorting colored buttons—something that they may be able to do on their own once they get kind of like a jumpstart. One study showed that a stimulating environment, specifically environments with moderate stimulation, did the best to lift people out of their apathy, while none or too much made it worse. And I think that that's important to understand because there has to be a balance. People living with dementia can become easily overstimulated or overwhelmed, and as the time falls into later hours of the day, it can become even more easier to overstimulate them as their brain starts to fatigue. So you really do have to have this balance of activity and rest, and you have to break tasks down into manageable pieces. This is also why establishing routine is so important. Not only do people living with dementia tend to just function better when there's this predictable flow to the day, but also when that flow to the day includes some balanced engagement. Routines are also great for you as the care partner because it can really help to reduce your stress levels.  

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So my challenge to you is to question whether your partner really just prefers the lax lifestyle of sitting back and watching TV or just sleeping, or if the reason for their sedentary behavior is due to apathy. Can you think of ways to help your partner better engage in their environment? Can you maybe create a balanced routine of stimulating activity that can bring your partner joy and lift them up and out of their apathy? Let's find out, shall we?

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