The World Parkinson Coalition (WPC) hosted a conference in September 2020 for Parkinson’s disease (PD) caregivers and family members. One of the sessions was a series of short presentations on cognitive changes in people with Parkinson’s, followed by a question-and-answer session. It featured four speakers all with different experiences in this topic: a registered nurse, a social worker, and a person with Parkinson’s with his caregiver husband. This discussion was focused on the role of PD caregivers while a person with PD is experiencing cognitive changes.
This webinar was recorded and is on the WPC conference website.
Click on the “Streaming” button to view the recording.
I listened to this panel discussion and am sharing my notes below.
For additional resources on cognitive changes in Parkinson’s disease, see this Stanford Parkinson’s Community Outreach webpage here.
– August Besser
“Cognition, Caring, and Coping” – Panel Discussion Notes
Conference Host: World Parkinson Coalition (WPC)
September 14, 2020
Summary by August Besser, Stanford Parkinson’s Community Outreach
This discussion included 4 panelists and the moderator:
- Jenna Iseringhausen, RN, NYU Langone Marlene and Paolo Fresco Institute for Parkinson’s and Movement Disorders
- Elaine Book, Social Worker, University of British Columbia
- Hyam Kramer, person with Parkinson’s and PD advocate, Boston, MA
- Tom Gunnoud, PD caregiver and PD advocate, Boston, MA
- Moderator: Margaret O’Conner, MD, neurologist, Harvard Medical School
Dr. Margaret O’Conner: Our first question is for Jenna Iseringhausen regarding cognition and Parkinson’s disease. Jenna, what role does the care partner play?
Jenna Iseringhausen: Today, I will be speaking about Parkinson’s disease and cognition. Parkinson’s disease as we know it is a neurodegenerative disease process. This causes difficulty with movement symptoms, as we are all aware of, but also non-motor symptoms. And when we’re talking about non-motor symptoms, we’re talking about non-moving symptoms. And cognition is a very big part of that. What we mean by cognition is the ability for someone to process and learn information, to problem solve, and to use that information to carry out their day-to-day activities. As a care partner, it’s very important to be able to educate yourself on the signs and symptoms, even mild changes to cognition. As well as then to the safety and quality of life. Some of those changes that might be seen with cognitive impairment might be mild, and more concerning for executive function. That would involve planning, flexibility of thoughts, reservation (or inhibition from automatic responses), the retrieval of information, and the ability to apply that information going forward. We also hear quite a bit about multitasking being more challenging as well. And we might also see a little bit of progression from there, like forgetfulness, difficulty recalling names or addresses, or more serious memory difficulties as the disease progresses. This can also depend on age and disease duration as well.
Some of the more severe cognitive changes we might see are memory impairment, disorientation, confusion, and over time possibly hallucination. That would involve seeing, hearing, or feeling something that isn’t actually there. Something to keep in mind with this is that not all individuals have cognitive impairment will develop these phases of dementia or worsening cognitive status. It’s very dependent on the individual and their progression with the disease. Some of those associated factors that we might find are age, greater motor severity of symptoms, confusion, and also sometimes mood changes. It’s very crucial for a care partner to notice even mild changes in a person with Parkinson’s, because they are with them all the time and are able to see if something might be different in their behavior or mood.
Some of those subtle changes might be level of interaction with a conversation, which might decrease over time; this could be concerned for the speed of conversation or maybe just feeling like they can’t keep up with how fast people are conversing at that point. Also remembering to take medication, that might be a subtle sign to monitor for. We have to keep in mind that just because someone forgets to take a medication doesn’t mean that they’re having cognitive changes. It might also be a complicated medication regimen. Multitasking can become more difficult, impairment of attention, answering questions, and increased difficulty keeping up at work or all other signs of subtle changes with a person with Parkinson’s disease.
What’s very important as a care partner is to understand the timeline of these subtle changes. Are they short changes, over a couple of days or weeks? Or is it a longer period of time, like months or years? Did the person start new medications? Are they starting new sleep patterns or exercise routines? Overall, with any changes that occur, its important as the care partner to keep track of the changes, because you see that person the most and have the intuition to notice any changes and keep up with them over time.
It’s very important that you advocate for the person you’re caring for to stay physically, mentally, and socially active. Music therapy has been shown to improve mood, cognition, and quality of life. The main take away from this section as a care partner is that I want you to trust your gut, advocate for your partner, notice any subtle changes, and bring them to the attention of the care provider for that person. We’re really trying to optimize quality of life and to keep everyone safe, including yourselves as well.
Dr. O’Conner: Thank you very much for that overview, Jenna. I did have one question for you after your talk: “If as a care partner, we notice signs of cognitive change in our partner, and we bring those up to their care provider, what will the physician do about it?”
Jenna: Often times, if the changes are noticed, and you bring it up to the care provider, they will ask you more questions about that. If there are any medication changes, if there are other signs and symptoms like mood or sleep changes, the way they interact with you, those will all be questioned. Are these changes interfering with quality of life? From there, they’ll be able to provide some further guidance on interventions, whether those are non-pharmacological or if there is a new medication needed to help control the symptoms (which is only if those symptoms are severely impacting the quality of life).
Dr. O’Conner: Now, Elaine Book will speak about how cognition impacts the care partner, and will provide some tips and tricks to use when cognition is a challenge.
Elaine Book: Now that we’ve heard from Jenna about cognitive change and how that impacts a person with Parkinson’s, I want to talk about how cognitive change impacts you as a care partner: on a practical level, emotional level, and a spiritual level. I often hear about how cognitive change impacts a care partner’s social life. If a person with Parkinson’s is unable to be left alone, or can only be left alone at certain points of the day or for certain periods of time, the care partner’s time to practice hobbies or interests or travel is severely limited. The care partner’s physical well-being can also be impacted because of there being less opportunities to exercise or fewer opportunities to take the time to prepare nutritious meals. Even going to see a doctor for their own physical health concerns. And we certainly know that stress associated with a care partner can also exacerbate or create health problems for the person being cared for as well.
It’s important to recognize that communication is often at the root of many of those challenges. Consider some simple strategies to make communication more efficient, like limiting the background noise of a television or radio, keeping lights on, and facing the person directly when they are speaking. Remember to keep directions as simple as possible, offer only two choices, and use paper calendars as visual reminders. Keep in mind that all of these communication techniques are a broader form of preparing for when communication starts to fail, and an advance care directive becomes necessary. Advance care planning in advance of cognitive change can be really valuable to the care partner and family when decisions need to be made later on and in stressful decision-making. Talk to the care provider, a support group, care partner chats, and other places to help you learn from each other about the emotions surrounding cognitive change.
Emotions often go unaddressed or unnoticed, and it’s important we take the time to talk about those changes to set expectations and plans for the future. Loss and grief are commonly felt by care partners. Some ways that we can help take care of these feelings are by taking steps to process those emotions. One way care partners can do that is by journaling, and writing down feelings in order to distance yourself when it comes time to make a hard decision. It’s really important to recognize that the person with PD is also feeling the loss and grief brought on by cognitive changes. One helpful technique to help empower your person with Parkinson’s is by having a “life review”, where you talk about the successes and moments that made each other proud throughout each other’s’ lives. I want to remind you that this may be a stressful time, but we can do our best to make these feelings less overwhelming by communicating early and often.
Dr. O’Conner: Thank you, Elaine, for your presentation. I do have a question for you: “My husband minimizes his cognitive change and he is not open to help. He gets frustrated when he loses his keys or can’t find something on the computer. How can I help him get help?”
Elaine: This is a great question and I get this often. I think we should look back at the concept of “open communication”, it’s a really important place to start. You might try to have a conversation about what it is that has been frustrating him; let’s say it’s around the keys. You might look for evidence of that, examples of when you found the keys in this place versus this place versus this place. Use concrete examples. Bring it up, and come up together with some solutions that might work. Perhaps a note on the door in terms of where to put the keys, or in a particular place that is agreed-upon, pick one and start with that. Start slow, and try it for a week, and then reassess. Put in that plan of this whole idea of “we’re going to revisit this in a week and see how it’s working.” Again, the frustration and reluctance to receive help is due to the loss and experience that he might be experiencing. Communicate that, and acknowledge that he might be experiencing some pretty strong feelings around cognitive changes, and try to work through it rather than avoid it.
Dr. O’Conner: Thank you. I would now like to invite Tom Gunnoud and Hyam Kramer to speak about their personal experience working through cognitive changes and Parkinson’s disease.
Hyam Kramer: Hi, I’m Hyam Kramer, and I have Parkinson’s. This is my husband and care partner, Tom. We’ve been together for 25 years and married a few years ago. My mother had PD, and I was diagnosed with hereditary Parkinson’s four and a half years ago. I am very lucky to be married to this guy.
Tom Gunnoud: Yes, he is! I think the important thing for me, once he was diagnosed, is to realize that his care team is not only his care team, it’s my care team too. It’s important for me to listen to what they see with him. I remember his mom fondly, but it scares me too because I saw her progress with Parkinson’s disease. She had a very difficult number of years. We made sure to listen to the providers to see what might be coming up and see where Hyam and his illness is right now. He’s progressing very slowly, so that’s a blessing. He’s able to stay very focused on his job; on weekends, he’s sometimes on focused on goals we have for together. Unless were planning a trip, he’s always ready to jump on a plane and ship to get me someplace. In this early stage, that’s been the biggest thing is difficulty staying focused on long-term goals in his free time. Work is fine.
Hyam: I want to add that, what was truly a gift for me is the many, many outlets for crusading against Parkinson’s. Professionally, I’m a fundraiser, for political and charitable causes, and someone very drawn to the opportunities out there to participate in research and engage in group exercise classes with other Parkinson’s patients. To help participate in this kind of opportunity to communicate and share. To anyone who has Parkinson’s, engage in that type of activity and sharing that with your caretaker is a very rewarding experience. I would also say that it was difficult to watch my mom decline to the point where she lost all cognition. She did not recognize me. She had to be fed through her stomach. She declined gradually but it was a catastrophe for me, knowing that this may happen the same way to me as well. What’s been helpful is being more focused on enjoying and making use of what I can do, not focusing on what I cannot do. To seize the day, to embrace what’s possible. Work as a team with my husband on planning for the future. Part of my happiness is knowing that I have the support of someone who can think ahead, who can engage me in the process of planning ahead.
Tom: It does impact you when you see your partner, your husband, your wife going through this. It’s important for me to read my own feelings to understand what I’m dealing with when talking about loss. We all experience losses in our life, but sometimes in a disease like Parkinson’s, you can actually see them and list them as they start to happen or have happened. For me, the most positive thing has been to stay engaged in life with our family and friends, and to make sure he is with me in those things. With this pandemic, it’s been having picnics and small get-togethers at a distance. We need support groups beyond ourselves.
The other thing I’m blessed with is living in Boston. There are so many resources available here, both for my husband and myself. At this early stage, I haven’t taken a lot of time to explore those, but I’m comforted by the fact that they are available.
Hyam: Tom has encouraged me to participate in activities where I feel like I’m helping someone else. The wellness program at Beth Israel Deaconess Hospital Medical Center sponsors group exercise classes with other PD patients, and has provided me the opportunity to get to know other people with PD and at different stages of PD. We’re able to counsel and empathize with each other, and create friendships. I felt a great sense of fulfillment from working with everyone there. I’ve been asked to participate on other panels. I’ve been able to talk about myself and actually be in a book. It makes me feel like I am in the driver seat sometimes; I am there providing help and I am there providing opportunities to others. It’s so rewarding to provide hope to others.
Tom: One of my lines is: “While it’s important to be realistic and to pay attention to what’s going on, it’s also important being optimistic too”. And to find those signs of hope, that we can continue to live the same life together and still enjoy each other’s company. And move into the future. Just making the most of what we have day-to-day.
Dr. O’Conner: Thank you very much for sharing your story. I did want to ask an immediate question of Tom: “As a care partner, what do you think is the most important role you can play for Hyam?”
Tom: “Care leader”. You just keep rooting him on, and pushing him since Hyam sometimes has a sense of wanting to sit back. We don’t have to stop. Right now, your physical limitations are not the problem; it may be your energy level. Keeping him going emotionally is the best thing.
Dr. O’Conner: All right, I am going to invite the whole panel back for questions. Our first one is from a care partner in Nova Scotia, Canada. Her husband saw a neuropsychologist who attempted to distinguish between dementia and mild cognitive impairment. Her husband was tested for Lewy body dementia, because she had noticed some cognitive changes, but the test came back normal. This was confusing to the extent that she thought the doctor had grabbed the wrong patient file. Her question is: “How do neuropsychologists distinguish between dementia and mild cognitive impairment?”
Jenna: That sounds like a very complex situation there. I’m so sorry that you felt like you left without having some of your questions answered. You’re absolutely in the right to be asking more questions! Now, for neuropsychological testing, there’s usually a battery of tests that they will perform that will look at visuospatial reasoning, executive functioning, and different questionnaires or diagrams. I think sometimes the challenges of those tests are that they are very long, and people can become tired while taking them as well. Often times with that type of testing, there’s no harm in getting another opinion or having it done over again. Always consider the timing of when the test was done: was there something going on with Parkinson’s medication and timing? Sometimes people might notice an increase cognitive slowness or challenges when they’re feeling more off from their medication. That can impact the results to come back from neuropsychological testing. It can be beneficial to bring that up with a provider. I think there are a number of different factors playing a role in LBD versus dementia versus Parkinson’s disease. Mild cognitive impairment is usually less severe compared to LBD or Parkinson’s disease dementia.
Dr. O’Conner: Thank you, Jenna. I have a follow up question for you with another care partner question: “Attention, focus, and lack of concentration: are these common complaints? Are there treatments?”
Jenna: These are common complaints what can happen at different stages depending on the individual. That lack of focus and lack of attention, difficulty multitasking; we hear that very often and more from the care partners and loved ones that they noticed about their significant other. Now, the interventions for those symptoms generally depends on how much they are interfering with the day-to-day activities and quality of life. If it’s something where there are more subtle changes, we generally incorporate speech language therapy and occupational therapy and work with that executive functioning as well. Also, the exercise and getting involved socially can be beneficial for those symptoms, too.
Dr. O’Conner: Thank you. We have a question for Elaine, Hyam, and Tom. From a care partner in British Columbia: “What if your care partner denies cognitive changes? What do you do then?”
Elaine: We have to look at sometimes why that is. It could be attached just dealing with the difficulties themselves around Parkinson’s disease. It may require a heart-to-heart conversation with the person with Parkinson’s. It all comes back to the initial theme that I was talking about in regards to: “How do we communicate with them about these changes?” We don’t have to bring up every deficit to their awareness; that’s not necessarily going to be helpful. But if the deficits are showing up in areas that are going to put them at risk or you the caregiver at risk, that’s when some changes need to be made. Certainly, you can enlist the support of your team or your family. Sometimes there’s somebody that is able to have those kinds of conversations more easily. It may even be someone within the religious realm.
Tom: I like the fact, Elaine, that you brought up talking to the care team. When we’re talking with one another, we can get frustrated with what the other person maybe is not understanding. But by bringing someone else into the conversation who can help go through the weeds, we can figure out what is supporting and what is not. But when it’s just the two of us talking, sometimes there’s frustration. I think that’s where a third person is always helpful.
Dr. O’Conner: Another question for the three of you, from a care partner in Alberta: “I am having trouble communicating with my husband, because there is some defensiveness when I bring up his mumbling and our inability to fully express ourselves in conversation. These talks can turn into arguments, and I don’t know how to make small talk with him anymore. Any suggestions on how to handle this?”
Tom: That has not been my experience with Hyam so far. It was with his mom.
Elaine: I think my first comment is really to meet the person where they’re at. If you were recognizing that there is some change and that the depth of the conversation, or the speed of the conversation, or the content needs to change because of cognitive change, and then I think you need to look at that and meet the person where they’re at. It doesn’t mean you stop having conversations about things you are both passionate about, but you might change up the way that conversation looks. The other thing is the time of day. The person with Parkinson’s might have a really hard off., Or they might be really on during the day. There might be other stressors throughout the day. So look throughout the time a day for when you want to engage in these type of conversations, but really when you want to talk about anything. Be mindful of Parkinson’s symptoms, medication is kicking in. Timing is really important.