Apathy and Parkinson's Disease

As our disease progresses, we often witness our productivity declining as well. This may in part be due to an increase in motor symptoms and the accompanying disability, but it also may also be a result of an insidious, fairly common nonmotor symptom of Parkinson’s—apathy. It is estimated that approximately 40 to 45% of Parkinson’s patients suffer from apathy. This number, however, is likely an underestimation given the vagueness of the symptom making it more difficult to recognize thereby leading to underreporting.

Apathy may be defined as a lack of interest or “motivation, not in the context of emotional distress, intellectual impairment or diminished consciousness.” Unlike the loss of motivation that is seen in depression, in apathy alone, there is no co-existing depressed mood. It can manifest as no self-initiative to start or complete necessary tasks or learn new things and self-direct future goals and plans. This lack of goal-directed behavior and also the lack of emotional response can have a significant negative impact in all areas of life—personal, social and occupational. In fact, others may misinterpret apathy as being akin to laziness or purposeful disregard and disinterest, thereby affecting relationships and interactions. This has a detrimental effect on personal quality of life and contributes to the stress experienced by care partners and loved ones.

How People With Parkinson's Can Beat Apathy

Following an assessment of your symptoms and diagnosis of apathy, your healthcare provider may discuss medications directed at increasing energy (such as methylphenidate) or other medications directed at the dopamine, cholinergic, and serotonergic systems (certain antidepressants or antipsychotics). But more importantly, are the behavioral changes that we must make ourselves.

1. Set up a schedule: Using whatever means you prefer—technology or pen and paper—set up a daily schedule. Incorporate your self-care routine including exercise, mindfulness activities and so forth, household and family responsibilities, and occupational duties. Don’t simply make a list, assign times to tackle each task and a lot enough time for completion of each item. Be sure to adhere to the schedule throughout the day and check tasks off your list as they are done.
2. Reward yourself: Once you have successfully completed a preset goal, reward yourself with some “me time” or a walk or social interaction, whatever you may still enjoy.
3. Make yourself accountable: Sometimes the best motivation is someone else’s motivation. If for example, you want to start going for daily walks but find it difficult to initiate this activity, then having a walking buddy who gets you going regardless of your own internal drive to do so, can keep you on track.
4. Start slow: If you’ve been apathetic for a long time, it may be difficult to take on a number of activities all at once successfully. But small advances that are successful, may be regarded as “wins” which starts to motivate future and greater action.
5. Physically feel your best with exercise: Exercise has a number of tangible benefits in Parkinson’s disease and has been shown to increase motivation and interest thereby reducing apathy and increasing productivity. It gives you increased energy and may cause an increase in endorphins and other chemicals in the brain that elevates mood and improves motivation.
6. Sleep is important: Sleep disturbance, unfortunately, is also quite common in Parkinson’s. The ensuing fatigue caused by poor sleep combined with apathy leads to significant issues. Through careful sleep hygiene and medical assistance, if sleep and fatigue are improved and not significant complicating factors, apathy may be easier to manage.
7. Don’t isolate yourself: Being around the energy of other people and engaging in interesting conversations and activities can not only make you feel better but it can help spawn motivation—directed action.

Long gone is the concept of Parkinson’s disease as solely a movement disorder. This is a much more pervasive disease with symptoms affecting our very motivation, causing us to lose interest in life, and blunting our emotional responses. And like everything else in this disease, an issue like apathy requires your active management. Whether you’re motivated to address the problem or not, your quality of life depends on it.