Apathy is a non-motor symptom that can sneak into daily life when you have Parkinson’s disease (PD). Although apathy is not always immediately apparent, left unaddressed, it can evolve into a hurdle to your health. Seasons of waning motivation or lackluster feelings are relatively commonplace in the human experience; however, apathy has been studied and identified as one of the neuropsychiatric symptoms caused by a physiological change that may accompany Parkinson’s.

As a speech-language pathologist (SLP) I have observed this characteristic of PD frustrate family members, stall progress in therapy, and become a leading cause of isolation in some of my patients. Although apathy is not a symptom SLPs treat directly, there are a variety of tools I reference and provide as resources when working with an individual or family navigating this type of obstacle.

For people with Parkinson’s

You are not alone.
Perhaps one of the only silver linings to the growing number of people being diagnosed with PD each day is the expanding community who can provide insight, shared experiences, and tips along the way. There are many people who are walking a similar path to you. Having proof that you are not alone with a chronic disease may bring some levity. This piece featured on Michael J. Fox Foundation’s website is written by a blogger with Young Onset Parkinson’s Disease. The author, Bev Ribaudo, is known for spreading humor and authentically sharing the nuances of a life with PD.

Make a plan.
The Davis Phinney Foundation has comprehensive downloadable worksheets on their website. Under the category “Wellness and Lifestyle Self-Assessments” you will find the Wellness Self-Assessment, which can be completed online and saved to your computer or printed and filled out at your leisure. The self-assessment prompts you to identify areas of concern and provides a space to fill in steps to resolve the problem. This is a simple way to revisit your progress and identify goals that can guide movement forward. If apathy is already in full swing and making a plan seems overwhelming, ask a loved one to get you started.

For care partners

Identification and advocacy may fall to you.
If you notice a change in your loved one’s behavior, discuss it with them and plan to bring it up at your next appointment with the movement disorder specialist. Identifying apathy requires the ability to self-reflect. In the event your loved one doesn’t do this regularly or possibly doesn’t have the skill to self-report independently, take the opportunity to advocate for their needs. Here are a few questions to ask when identifying apathy:

1. Does my loved one demonstrate decreased ability to initiate everyday activities?
2. Has there been a negative change in my loved one’s motivation?
3. Is my loved one lacking passion in activities they previously enjoyed?
4. Has my loved one lost interest in trying new activities (specifically if they used to enjoy spontaneity/new places/trying new things)?

If you answered “yes” to some or all of these questions, it may be time to discuss options for modifying the support they receive. Although there are no approved medications to treat apathy, your movement disorder specialist can provide guidance on managing changes related to neuropsychiatric symptoms.

Apathy is different from laziness.
There are many misperceptions about apathy. Michael J. Fox Foundation’s page provides more information on the definition and causes of apathy in Parkinson’s. As a care partner, you may find yourself becoming frustrated with the way apathy has changed your loved one or prohibits the family from engaging in otherwise typical activities. Apathy in PD should not be assumed to be laziness and may require family and friends to modify their support of the person living with Parkinson’s.

For clinicians

Treat the whole person.
When you assess and treat someone with Parkinson’s disease the evaluation should include a review of all symptoms, not just the ones directly related to goal-setting. Apathy can and should be addressed with the same care as other common symptoms in PD like orthostatic hypertension, rigidity, or a reduced vocal volume. During a lecture in 2016 put on by Parkinson’s Foundation, professionals from the neuroscience community presented on identifying apathy in people with PD. Thier discussion of trials being conducted, as well as the evidence to date is insightful and can guide your knowledge of how apathy may impact your patients in a therapy setting. Similar to care partners, your patients may need you to be an advocate for their neuropsychiatric needs not only to produce the best outcomes in therapy but also for quality of life.

Do your due diligence in the case history review.
Don’t skip the medication list review! SSRI’s are a common drug used to treat depression and studies have shown that they may cause increased apathy. If you  are treating a patient who takes SSRI’s, it may warrant a discussion with the referring physician. If you are looking for more information on specific types of medication that may be impacting your patients this 2012 study discusses the topic.

Browse Additional Tools 

Parkinson’s Care Partners Rulebook

Helplessness & Hope in Parkinson’s Webinar

Apathy: How To Combat: By Dr. De Leon

Ask the MD: Apathy and Parkinson’s Disease

Parkinson’s TV Episode: Apathy and Parkinson’s