Simply defined, apathy is a loss of motivation, desire, and interest. In reality, however, apathy is anything but simple. A common non-motor symptom of Parkinson’s, apathy can occur alongside or separately from depression and may be misinterpreted as laziness or a lack of initiative. Although the cause of apathy in Parkinson’s is unclear, research indicates that it’s due to a chemical imbalance and structural changes in the brain.
No matter its cause, apathy can have a significant impact on quality of life, not only for the person living with Parkinson’s but also for their care partner. If you have found yourself struggling with apathy during your care partner journey, you know that it can be one of the most difficult symptoms to manage. There are, however, strategies that can help. In this article, we’ll explore actions you can take to help your person manage this symptom.
#1 - Pay attention
Care partner Pat Donahoo says that while some aspects of Parkinson’s “can creep up on you as a care partner and slap you in the face, apathy for me is more of a tap on the shoulder that says it’s time to step up."
"Although we as care partners are not mind readers, when we pay attention and notice a change in character that fits the mold of apathy, it’s time to communicate.”
Pat says he noticed this change when it came to his wife’s desire to exercise. "The new lack of desire to exercise was unlike her,” Pat says. “Since her diagnosis we have taken up cycling, which is a big deal for both of us now. It helps reduce her symptoms, and it allows me to take care of my health as well.” Over the past several years, Pat and Cidney acquired bikes that allow them to ride inside or out, but with the onset of apathy, Cidney lost the interest to do either. Pat noticed. Then he spoke up.
#2 - Speak up
“A little is better than none,” Pat says, and with this in mind, he began to encourage his wife to do what she could, even if it wasn’t as much as she had been doing. “Think about how to encourage each other to accomplish goals,” he says. “Your goals may be different, but whatever those goals are, make them obtainable. Start small and slow, then build up. Over time, the results will come. Just remember, every victory counts!”
#3 - Get the right diagnosis (and the right doc)
It’s essential to work with your person’s physician to obtain an accurate diagnosis of apathy, especially because treatment for apathy is often different from treatment for depression and anxiety, two other mood-related non-motor symptoms. Apathy seems to parallel cognitive decline in that it impacts disorganization and memory loss more than depression does. The best evidence that apathy is more linked to cognitive decline than to depression is the medications’ effectiveness based on the diagnosis. Medications for cognitive problems appear to work better for apathy than medications used to treat depression.
“When my wife first started experiencing apathy, it because even more important for me to attend doctors’ appointments with her and to give input,” Pat says. “We had just gotten a new doctor—if your current doctor isn’t providing the care you need, get a new one!—and I brought up apathy at the appointment. Even though his wife didn’t want to talk about it, her doctor took the reins and discussed the situation. She suggested a few changes to my wife's DBS settings, as well as a medication change. The improvements were amazing."
"Communicating with your person's neurologist or movement disorder specialist is extremely important. They should be an active member of your team.”
#4 - Explore medication adjustments and other treatment options with your person’s physicians
Take a cue from Pat and talk with your person’s physician about pharmacological options for apathy. Talk with them, too, about non-pharmacological options that might help. Medication is not the only treatment path for apathy, and there are well-validated methods of therapy that may be able to help. Cognitive behavioral therapy, Acceptance and Commitment Therapy, and Interpersonal Therapy are three that have been proven to improve emotional functioning. Consider working with a mental health provider (a psychiatrist, psychologist, therapist, or social worker) to see if therapy can help your person (and you) manage apathy.
#5 - Encourage social activities
“Socially apathy can be a challenge,” Pat says, “and during the pandemic we had to get creative. My wife created Zoom meetups and attended many creative, ongoing virtual events such as Amy Says Dance, Team DPF yoga, and Pedaling For Parkinson’s™. As care partners, encouraging these avenues can be helpful. In fact, care partners and welcome to attend any of these programs. And when the spark returns, continue to encourage participation in these types of social activities and to take an active role in participating."
Managing apathy requires active choices, both by the person with Parkinson’s and their care partners. Give these suggestions a try, and remember that it’s never too late to take action to manage the symptoms of Parkinson’s.
Want more care partner strategies?
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This post was written by the Davis Phinney Foundation.
This post was sponsored by Adamas.