Depression, Apathy and Fatigue

These three are all symptoms that people with Lewy body (PwLB) disorders often experience. How do you know which is which? They can all make your loved one (or you!) feel so tired that they can hardly move and all they want to do is sleep.

Depression causes changes in mood, thinking, physical well-being and behavior. It generates such feelings as sadness, misery, unhappiness, anger, loss and frustration. Besides decreasing quality of life, it adds stress and decreases one’s ability to deal with illness. A person who is depressed has the motivation to improve but not necessarily the ability to do so. They will complain about being too tired and wish they had the energy to do more.

Situational depression is usually short term, caused by a distressing event. When a PwLBD’s depression doesn’t leave, or appears to get worse, it is probably not situational but is instead a neurological symptom of the disorder. Depression makes it more difficult to do tasks, make decisions or interact with others, all abilities that can also be decreased by dementia. Like LBD, it cannot be cured but can be treated. There are some Lewy-safe antidepressants which may improve cognitive functioning.

Apathy is the loss of motivation, without associated feelings of depression. It damages one’s self-starter—that extra push we need to overcome the inertia of inactivity. As it increases, it also decreases the ability to keep going.  With apathy, nothing is easy. Everything takes effort, often more effort than a person can muster up.  They may appear to have given up, accepting things as they are, voicing few complaints or wishes for change.

Fatigue is an extreme loss of energy. The loss may come from working hard. This doesn’t necessarily mean hard physical labor. If there are language difficulties, then talking can be exhausting. With motor problems, walking can wear your loved one out very quickly. Dealing with stress or illness can be tiring. Depression and apathy both deplete energy and leave a person feeling fatigued.

Negative feelings such as sadness or loss along with the presence of motivation suggest depression.
Ex: “I wish I didn’t feel so down all the time.” Or “I wish I had more energy.”

Negative feelings without motivation suggest both depression and apathy.
Ex: “I feel so down. I can't do anything. Just go away and leave me alone.”

The lack of both negative feelings and motivation suggests apathy alone.
Ex: “I don't care that I can't do that any more. Leave me alone; I just want to sleep.”

For the PwParkinson's, apathy without depression is a sign that dementia may soon appear. Consider a test for MCI.

Apathy and Activities

Dementia caregivers know they need to find ways to keep their loved one’s brain working, ways to stimulate those still active brain cells and keep them functional as long as possible. Most of these ways require participation by the caregiver. One of the first things Lewy steals is initiative and motivation.

Harry explained, “Even before Edna lost much if her thinking ability, I noticed apathy; Edna’s “self-starter” was damaged. When I suggested something, she was glad to follow along and seemed to enjoy the trip as much as ever. But she never started anything herself, never asked to do anything.”

“That was a couple of years ago,” he continues. But the apathy remains. ‘Let’s do a puzzle,’ I’ll say to Edna. She’ll nod.  She doesn’t show much emotion—those days are over for the most part, but she will usually agree to do whatever I want her to do.” Once they start working on the puzzle, designed especially for people with dementia, Harry can tell that she’s enjoying herself. “She reaches for a piece,” he says, “tries it in a couple of spots and pats it several times when it finally fits.” True, she tires before the puzzle is done, but it will be there tomorrow for another challenge. (You can get puzzles like this on from our LBD Book Corner on our website.)

Janice sits with her mom every afternoon and asks about the photos in the family  album. “Do you remember this, Mom?” “What was happening here?” “Who is this?” They spend a few minutes each day with Mom reminiscing. Janice learns more about her family history while Mom exercises her brain. A win-win situation for both of them—but it probably wouldn’t happen if Janice didn’t make it happen. “Mom used to be such a take charge lady,” Janice said. “But not anymore. Now she would just sit and stare at the wall or her lap if I didn’t encourage her to do something.

Robin and her dad, Adam, spend time reading each day. Adam had been a teacher, and a voracious reader. Now, Robin explains, “Dad can’t read, hasn’t been able to for a while now. But he is very attentive when I read. He follows right along.” Robin has discovered an important aspect of LBD—comprehension usually remains intact after other skills slip and disappear. Even though Adam cannot read himself,  he can understand what Robin reads. This is why you need to be careful what you talk about in front of your loved one who is apparently incoherent, sleeping, or not paying attention. But it is also a way for some mutually enjoyable together time, “reading” something that both of you find interesting.

Caregiver and loved one spend many hours together every day. However, they are usually playing the nurse-patient game; like it or not--that is what is needed most as LBD takes its toll. Working on an abbreviated version of a once-loved hobby stimulates the brain. However, the biggest the reward for both participants may be the chance to do something together again as a team, even for a short time.