The relationship between Parkinson’s and Apathy

One of the most challenging and puzzling non-motor symptoms of Parkinson’s disease (PD) is apathy. Apathy is defined as a feeling of indifference or a general lack of interest or motivation in activities. People with PD may feel that they have lost their “get up and go”, and can’t muster enthusiasm for anything – even things they once engaged in and enjoyed.  Apathy can be a very frustrating non-motor symptom of Parkinson’s disease (PD) not only for the person with PD but also for care partners, friends and family.

Apathy can co-exist with other non-motor symptoms of PD

Apathy can occur along with depression, but it can also occur on its own, without depression. Someone who is apathetic might not feel sad or despondent, but simply has no interest in doing the things that he/she used to find fulfilling. It can be very trying, both for the person with PD as well as for the care partner, to lose that feeling that once drove the person with PD to plan and accomplish tasks.

What makes the situation even more complicated is that someone who is purely apathetic and not depressed, may nevertheless seem depressed to loved ones and friends. So apathy can both accompany depression and mimic depression.

Apathy often co-exists with cognitive difficulties as well, especially executive dysfunction or difficulty initiating, planning and executing complex, multi-stepped behaviors. However, apathy can also occur in those without cognitive difficulty. Once again, an apathetic person, even in the absence of cognitive problems, may seem like he/she has cognitive difficulties. So apathy can both accompany cognitive decline and mimic cognitive decline.

Apathy can interfere with living your best life with PD

Apathy can interfere with a person’s commitment to exercise, participation in therapy, or engagement in social opportunities, which makes it a big challenge for people with PD who, more than most, need to engage in these activities to stay as mobile and cognitively engaged as possible. Withdrawing from the things, activities and people you once enjoyed can have negative effects on your physical and mental health, so it is important to maintain at least some of the these elements despite the challenges of apathy.

Apathy can be more frustrating for care partners than for people with PD themselves.

A person with PD may be very aware of a change in his/her level of motivation. However sometimes apathy can be accompanied by a lack of self-awareness about the issue. The person with PD may feel content, does not understand why his/her care partner is so insistent that he/she participate in an activity and is not aware that his/her disinterest is actually a symptom of PD or is affecting those around him/her. This can fuel intense frustration and resentment in the care partner who may feel that “My husband does not want to help himself!” It can also make it hard for those who want to spend time with the person with PD and engage with them because they can be met with indifference or disinterest, which after a time can be discouraging.  However, it is important to not give up and to still spend time with the person with PD, even if just sitting quietly together.

As with any symptom, discuss it with your medical doctor and neurologist

Because apathy can coincide with other non-motor symptoms but can also mimic other non-motor symptoms, it is important to discuss your feelings of apathy with your doctor. He or she may want to evaluate you for depression and cognitive difficulties, which are two non-motor symptoms that can be treated with medications. He or she may also want to test you for medical conditions that could potentially contribute to the overall clinical picture such as Vitamin B12 deficiency or hypothyroidism.

There are no medicines available for apathy, but there are ways to help

Unfortunately, there are no medications currently approved to treat apathy, which can make the situation even more frustrating. A small trial using rivastigmine for apathy showed that it may be effective, but a larger trial needs to be done to conclusively determine if it works.

But the good news is that there are ways to improve the situation:

• It is OK to continually encourage the person with PD to engage in pursuits or to take part in outings. The person with PD might need to be urged to participate, but then will hopefully enjoy the activities.
• Whether trying to overcome apathy in yourself, or trying to encourage someone else with apathy, focus on small goals first, and slowly build to bigger goals.
• Try to establish a regular routine, in which particular activities are done at particular times without negotiation.
• Remember that apathy is a non-motor symptom of PD and is not under the control of the person with PD. Keeping this in mind should help care partners as well as people with PD refrain from blaming themselves about their lack of initiative.
• Participation in support groups, for both the person with PD and the care partner, can be helpful in dealing with apathy.

Tips and takeaways

• Apathy can be a frustrating non-motor symptom of PD.
• Apathy can be accompanied by depression and/or cognitive decline, it can also mimic depression and cognitive decline, and it can also occur independently of these other non-motor symptoms. This can make apathy confusing to distinguish and identify.
• Discuss this and all other symptoms with your doctor as he/she may want to evaluate you for other non-motor symptoms and may want to check for some medical conditions as well.
• Although there are no medications approved for apathy, lifestyle modifications can help, including the establishment of a non-negotiable, regular routine.