In late September 2023, the Davis Phinney Foundation hosted a webinar on Parkinson’s disease (PD) care partner outcomes. Moderator Polly Dawkins and Dr. Jori Fleisher discussed unique challenges people face when acting as a care partner to someone with PD, why taking care of yourself is important as a care partner, and some strategies for building a team to help care for your loved one.
This was the first in a multi-part webinar series titled Living Well and Thriving as a Parkinson’s Care Partner. The series began in late September and will end in early November. The goal of this series is to improve the knowledge, confidence, attitude, and skills of care partners of those with Parkinson’s. The series will share strategies that improve quality of life for both the person with PD and their care partner.
A recording of this session is available on the Davis Phinney Foundation YouTube channel.
You can find a broad range of resources for care partners on the Stanford Parkinson’s website:
These are my notes on the series’ first session, “Goals, Roles, and Care Partner Outcomes.”
“Goals, Roles, and Care Partner Outcomes”
Session 1 of the Living Well and Thriving as a Parkinson’s Care Partner series
Speaker: Jori Fleisher, MD, Rush Medical College Department of Neurological Sciences
Webinar Host: Davis Phinney Foundation
Webinar Moderator: Polly Dawkins, executive director, Davis Phinney Foundation
Webinar Date: September 29, 2023
Summary by: Jordan Dagan, Stanford Parkinson’s Community Outreach
CARING FOR SOMEONE WITH PD REQUIRES A FLEXIBLE APPROACH
Polly explained why she uses the term “strain” to refer to the stress on care partners, rather than “burden.” Every care partner will experience strain because of the work they do for their loved one, but not everyone perceives this as a burden, and how much strain they’re under will fluctuate. Every care partner has a different capacity for different kinds of care.
The strain felt by the care partner of someone with Parkinson’s is not the same as the strain felt by the care partner of someone with Alzheimer’s! Parkinson’s symptoms affect the motor system, but also cognition, memory, urinary dysfunction, and more areas of functioning. In order to participate in an activity, the care partner and their loved one must consider the planning involved, the effect of anticipating the event, how to manage hydration and snacks, bathroom access and breaks, and recovery after the event.
Polly asked participants to answer briefly in the chat, “What does it mean to be a PD care partner?” Many participants mentioned coping with constant change and uncertainty, and Jori echoed this, saying this care partners’ series would address coping with changing symptoms and needs. There is a large amount of change and unpredictability in every person’s symptomatology, on a day to day, or even minute to minute, basis. These changes cannot be predicted or controlled, and vary in their timing, intensity, and duration. A loved one’s functioning may be very different at home, compared to in public or in a clinic. Jori has been asked many times, “Why does my loved one perform better for their friend, or physical therapist?” She says that performance may have taken all their energy for the day! The care partner then sees the effect it has on their loved one at home.
CHANGING ROLES AS PART OF A CARE PARTNERSHIP
Stress generally comes from worrying about the past or the present. The solution to this is usually to focus on the present as much as possible. This is difficult for care partners of someone with PD, because it is important to prepare for later stages of the disease. Jori noted that care partners often slow down to the speed of life of their loved one with PD, and put a tremendous amount of effort into researching, advocating, and finding resources. People who were once parent and child, friends, spouses, or neighbors, find themselves taking on new roles and responsibilities. The changes in role between members of a care partnership add a source of mental and emotional stress. Jori has seen care partners take on many roles such as nurse, occupational therapist, heavy lifter, problem solver, and social worker. Polly asked participants to list some roles they’ve taken on while caring for their loved one, and the responses included driver, manager, financial planner, translator, pharmacist, advisor, family therapist, and personal assistant.
ADVOCATING FOR YOUR LOVED ONE WITHIN THE HEALTHCARE SYSTEM
Polly pointed out that the role of advocate is especially common when one’s loved one is in the hospital. Medication errors are extremely common for people with PD, because their medications are time-sensitive. Healthcare workers legally have one hour of grace time on either side of when a medication should be administered to give it to their patient, but even an hour can make a big difference in the effectiveness of medications to treat PD. Jori reassured participants that it is okay to “be a squeaky wheel” and be a bother, especially if your loved one is in a hospital. You can also ask for a professional advocate, or ask for a supervisor or charge nurse, in order to help your loved one’s team understand the potential impact of disrupted medication timing.
Jori acknowledged that the healthcare system, as it stands now, has issues with communication, and that there is very little follow up or clarification if something goes wrong. Most providers cannot see information collected at different hospitals and systems. The system to request or share someone’s health information is slow and difficult to use, and time isn’t built into providers’ schedules to navigate the requirements of that process.
Jori recommends keeping a binder for each person in your household with as much health information as possible compiled. Give copies of your loved one’s binder, especially their advance directive and advocacy information, to family, friends, all your doctors, emergency staff, and anyone else who might need it. DPF has a worksheet on how to prepare for your next doctor’s appointment that is downloadable as a PDF on their website, and this can help you make a binder for yourself and your loved one.
The following items should be included in your loved one’s binder:
Contact information for each doctor you’re seeing
Updated medication list
Downloaded and printed test results or imaging information
Discharge papers from hospital stays
Advance directive and advocacy information
If your loved one with PD isn’t complying with their care plan, it’s important to tell their doctor! This lets their doctor continue to make informed decisions, and reduces the chance of your loved one being overmedicated. If someone with PD begins complying with their care regimen suddenly, this can be dangerous, especially if their doctor has raised the dosages of their medicines during the time they were not complying. If your loved one is in the hospital, staff will administer their medicines as their doctor has prescribed, and if they haven’t been compliant before their hospital stay, the sudden change can be hazardous.
THE EFFECTS OF CARE PARTNER STRAIN
Every care partner has a different capacity for strain. Overall, people with PD who have an engaged care partner have better outcomes than those without. Care partners are also mostly women, and women with PD are more likely to be left without support than men with PD. Polly pointed out that this means women with PD likely have less representation in the PD community and among research.
Care partner strain can have an impact on the care partner’s health! Care partners are at higher risk for high blood pressure, arthritis and back pain, and depression. Care partners often have health issues which are not addressed properly because they’re prioritizing their loved one’s care over their own. Unfortunately, this leads to the person with PD being left without their primary care partner, if their partner has to be hospitalized or has some other complication. Those with PD whose care partners are under high levels of strain are more likely to go to a care home than those whose care partners are less stressed. It’s important for care partners to make an emergency plan for if they’re not able to support their loved one.
Some people with PD have a difficult time acknowledging that they need help, and understanding how their difficulties affect their care partner. There is almost always a period of adjustment when people are first diagnosed, and while many people come out the other side of this period with some acceptance of their diagnosis and what future years might look like for them, some people do not. Their care partners cannot force their loved one to accept treatment, but they can model acceptance of PD as part of a shared future, and gently correct misconceptions when they arise. To help your loved one accept their diagnosis and limitations, connect to a community of those living with PD. Support groups and exercise groups are a great place to start.
Take note of whether you’re consistently eating, exercising, sleeping, and hydrating. If these basic needs aren’t met, you’re more likely to have health complications of your own. Sleep is very important for care partners; PD-related sleep disturbances often disrupt the care partner’s sleep as well, especially urinary symptoms and restless sleep. Make sure you’re getting at least 6-7 hours of sleep per night by setting a bedtime, and adding up how much you’re sleeping in total. If your loved one’s urinary symptoms are keeping you up at night, talk to your doctor. Jori pointed out that there’s a difference in treatment plan for someone who is waking up in the night because they have the urge to urinate, versus someone who wakes up for other reasons and happens to use the toilet before going back to sleep. There are many symptoms of PD that can cause dysregulated sleep. Melatonin may be helpful for re-regulating sleep, and helping your partner with PD get back to sleep. Depending on your loved one’s needs, immediate release or extended release melatonin supplements may be helpful.
Polly asked Jori if she’d ever met anyone who really had mastered their management of care partner strain. Jori said that acknowledging the difficulty of caring for your loved one is very important. Depression in care partners is prevalent, and a very real issue. To combat this, Jori suggests looking to reconnect with what you find meaningful in life. Keep a list of things you’d like to do! Aspirations you and your loved one had might still be possible, with modifications. Conserve your energy, and prioritize tasks that are most important for your care and your loved one’s care. Jori reminded participants that they and their loved one with PD can use mobility aids to save energy; you are not taking resources away from someone who “needs it more.” Making a plan for how to handle strain ahead of time will make it easier to cope with when the demands put upon you change. There is no one way to handle stress, so do what makes you happy!
Polly asked participants to write ways they cope with care partner strain in the chat. Prioritizing time to enjoy hobbies like books, prioritizing exercise, and spirituality or meditation were all mentioned. Sharing activities with your loved one can help preserve a positive relationship with them. For spouses, Jori mentioned the work of Dr. Sheila Silver, who does work with PD and intimacy. Using massage and touch can allow you to continue connecting to your partner. Meditation can also help your loved one with PD! Staying still and following a guided meditation may offer them relief from stress.
BUILDING A CARE TEAM AND GETTING HELP
Being a full-time care partner is often too much for one person, and nobody is alone. Create a team of care partners, so that you can delegate or take a break when you need to, if only so you can take a nap for an hour! Write down a list of tasks you’d like help with, especially if there are tasks you find particularly stressful, or tasks your loved one with PD used to do that you’ve had to pick up recently. This can help friends, family, and in-home professionals know what help would be most valuable to you. Jori advised participants to remember that in-home help professionals are there to help, and while they might not do tasks perfectly, watching their work doesn’t let you rest, and doesn’t let them do their job.
When recruiting a care team, reaching out proactively is important, as well as educating your helpers about PD. If you go to educational talks about PD, you may be able to collaborate with other care partners, and set up a social support system. The support you receive doesn’t have to be in person! Someone miles away may be able to order your grocery delivery, or make important phone calls. Spending social time with others can help reduce care partner strain, or give your loved one with PD have entertainment and supervision. Be prepared for later disease progression, and plan for it ahead of time.
In the last week, what situation did you handle well?
In the last week, what brought you joy?
In the last week, what made you laugh?
In the coming week, reflect on how to build more of these activities into your days.