Recently, ParkinsonTV offered a webinar on apathy in Parkinson’s disease, featuring a panel of speakers including two movement disorder specialists, a person with PD, and her wife, followed by a longer discussion with neurologist Mindy Bixby from Scripps Clinic. They discussed what apathy means and how it can be confused with depression, as well as some tips and strategies for living with apathy. We at Stanford Parkinson’s Community Outreach listened to the webinar and are sharing our notes.
The speakers from the webinar included:
- Dr. Mindy Bixby, a neurologist and movement disorder specialist with Scripps Clinic in La Jolla, CA.
- Dr. Bas Bloem, a clinical researcher with Radboud University in the Netherlands and co-editor in chief of Parkinson’s journal.
- Dr. Nabila Dahodwala, an Associate Professor of Neurology at the University of Pennsylvania.
- Leonore Gordon, a social worker, writer, and person with PD.
- Myra Kooy, who is Leonore’s wife and primary caregiver.
- Robert Sanders, a painter and person with PD.
You can watch the recording of this webinar on YouTube.
If you have any questions about the contents of the presentation, you can contact ParkinsonTV at parkinsontv.org/contact
The speakers referenced a book which comes out in March 2020, “Ending Parkinson’s Disease: A Prescription for Action.” To learn more, visit the book’s website.
For additional resources on apathy – including downloadable guides, links to online resources, and webinars and podcasts – see this page on the Stanford Parkinson’s Community Outreach website.
Now… on to our notes from the webinar.
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Are you feeling apathetic? – Webinar notes
Presented by ParkinsonTV
Webinar on January 31st, 2020
Summary by Lauren Stroshane, Stanford Parkinson’s Community Outreach
What is apathy?
Often confused with depression, apathy is a state of indifference, lack of concern or interest, and severe absence of initiative. A person who previously tended to plan or instigate activities may now be content to sit in a corner doing nothing for much of the day. Depression typically involves feelings of sadness or hopelessness, while an apathetic person might feel fine. Depression may also fluctuate, while apathy tends to be fairly constant.
Teasing apart whether a person is truly experiencing apathy or depression can be challenging, and there can also be overlap of the two. Cognitive impairment, fatigue, and daytime sleepiness are also sometimes part of PD, and may be confused with apathy or depression as well.
It is important to try to distinguish what symptoms are actually present, to determine what is actually going on and what is most impacting the individual’s quality of life. Apathy often impacts the caregiver too; it can be frustrating for family and friends to see their loved one withdrawing and becoming inactive, without understanding why. Understanding that apathy can be another symptom of PD can make it more manageable for the patient and caregiver.
How is apathy diagnosed and treated?
The neurologist or movement disorder specialist should screen the patient’s mood at every visit, to assess whether symptoms like depression or apathy are present. Apathy may manifest as a lack of activity, an inability to come up with a plan for the day, or lack of follow-through. A caregiver may feel frustrated and at a loss for how to get the patient to do things.
Current treatments for apathy are quite limited, with far fewer treatment options than depression. There are medications we can try – methylphenidate (Ritalin), modafinil (Provigil), and Amantadine – but Dr. Bloem has found that they do not tend to be very effective for most patients.
For most who experience apathy, it will likely stick around. It is important for physicians to ask the right questions, to help raise awareness. Having it out in the open can be very helpful for patients and caregivers figuring out how to manage it. Lifestyle changes and support can often go a long way to maintaining a good quality of life despite feelings of apathy.
The patients and caregiver on the panel provided their unique perspectives and insights about living with and supporting someone who feels apathetic due to their PD.
Patients and caregiver perspectives
Leonore and Myra are a married couple who spoke about their experiences managing Leonore’s apathy after her PD diagnosis years before. Robert is a painter with PD who lives on his own and also experiences apathy; he discussed what has been helpful for him.
As a writer and social worker, Leonore was a very active, engaged person. It was surprising to her wife, Myra, when she started disengaging from things she previously cared about, and it was confusing to them both. Once they understood apathy to be part of Leonore’s PD, they were able to adapt to find ways to manage it.
They have found that sometimes it is helpful just to acknowledge what the person is feeling, without judgment. Leonore appreciates it when Myra pushes her to do things; she has internalized Myra’s voice and sometimes hears her in her head telling her to go outside, even when Myra isn’t home. Myra has found that offering something beautiful, such as talking about how nice the weather is outside, or describing a fun activity that they are planning to do together, can help to spark some engagement from her wife as well.
For Leonore, it is important to feel useful in the world. She feels that a lot of people with PD can get themselves out the door if it is to help others. If she has nothing structured or planned that day, then she gets “stuck” and finds herself doing nothing, or finding it impossible to transition from one activity to the next. Making a plan for the day, possibly with a list or timetable, can sometimes help avert this. She has also noticed that exercise helps with her apathy; on days when she does not exercise, she feels incapable of feeling joy.
Myra also acknowledged that part of why they are doing so well, and why Leonore is able to have such a good quality of life, is that they have the financial means to have help, to afford medication, and to access good physicians.
As a painter living alone with PD, Robert has observed that if he doesn’t keep busy, he just wants to stay in bed all the time, and feels trapped by his PD. He describes himself as someone who cared “too much” previously, so it was unlike him to feel apathetic. Over time, he recognized that painting was one of the few activities he still enjoyed and felt motivated to participate in, so he reorganized his home to make it easier to paint as the disease progresses. Robert converted his basement into an art studio and feels that he is in a different plane of existence while painting, one in which he doesn’t have to think about his PD. He also talked about the importance of feeling hopeful for the future; he plans to do more travel and likes having something to look forward to.
Question & Answer Session with Dr. Bixby
Mindy Bixby, DO described her approach in her clinical practice. She addresses mood changes with all her patients at each visit, asking how they are feeling, if they feel sad, if they have enough energy, what motivates them to do things. Comparing how someone is feeling now with how they remember themselves from 5 years ago can be instructive.
Depending on the main issue that is affecting their quality of life, she sometimes prescribes medication to see if it is beneficial. In general, she finds that lifestyle changes and support from others are the most important.
She then took questions from the audience pertaining to apathy.
Q: My father has severe apathy, and I can barely get him out the door for a doctor’s appointment. What to do?
A: Start with a very simple task, to help him feel encouraged and engaged. The goal is to help him feel that the task is worthy of him doing it. A lot of the time, these people don’t feel like themselves and can’t figure out why they don’t care about things that should matter. Ask him questions and listen to how he is feeling; validation is important.
Everyone is different. Work on strategies to get him to engage, focus on small steps, employ positive reinforcement, and try to remove barriers ahead of time. Is it difficult for him to put his shoes on, for instance? Offer to help, or find a method to make it easier for him to don his shoes.
Exercise is so important as well – it stimulates neurotransmitter production and can really improve mood aside from the physical benefits.
For those who live alone, it can be more difficult. There isn’t anyone around to push them or motivate them. Engaging with a support group, friends, or finding a PD “buddy” to communicate with over phone or computer can be very helpful.
Q: Can apathy be caused by medications?
A: Medications for PD do not generally cause apathy. If you begin taking a new medication and start to feel apathetic, then it’s always possible that you are having a reaction to the drug. But if you have been taking your PD medications for quite a while and only recently started feeling apathetic, it is very unlikely to be the medication.
Q: Is apathy an issue for those with essential tremor?
A: Anyone can have apathy; it’s just more common in PD. Apathy is not specifically associated with essential tremor, the way it is in PD.
Q: I live alone and far away from my healthcare provider. Do you feel virtual healthcare can be a good resource? Should I look for a way to do this or is it important to be seen in person?
Ideally, you should see your movement disorder specialist or neurologist in person at least once a year. But telehealth can be a wonderful resource for those who live far away. She feels that most of the evaluation can be done by video, and that telehealth can provide wonderful value for people who live in rural areas.