Founded in 2000 by Emmy Award–winning actor Michael J. Fox — who was diagnosed with Parkinson’s disease in 1991 — The Michael J. Fox Foundation for Parkinson’s Research (MJFF) has recently published Facing Parkinson’s Together: A Guide for Care Partners, a resource devoted to helping caregivers navigate the complex journey of caring for someone with Parkinson’s. In addition to highlighting helpful strategies, resources and reassuring personal stories, the guide offers pragmatic steps care partners can take to nurture their own mental health and well-being — a priority that can be all too easily set aside when living and dealing with Parkinson’s.
“We hope caregivers come away from the report feeling both more prepared and less alone,” says Haley Grego, director of corporate alliances at The Michael J. Fox Foundation, which is also an AgeTech Collaborative™ participant. “It’s designed to offer practical, real-world strategies alongside emotional support, grounded in the lived experiences of other care partners. Ultimately, we want caregivers to feel empowered with knowledge, confident in navigating challenges, and connected to a broader community and set of resources.”
Many of the tips and principles in the report extend beyond the boundaries of Parkinson’s care and can benefit those who provide care to loved ones with any number of health concerns. What’s more, AgeTech innovators developing caregiving solutions can also learn from the guide's insights: A clearer understanding of their audience’s on-the-ground challenges can yield more effective tools and services that solve real-world problems. “Many people with Parkinson’s and their care partners are actively seeking tools that support mobility, medication management and activities of daily living,” says Grego. “MJFF brings a deep understanding of these lived experiences, making us a strong contributor to ensuring that AgeTech solutions are practical, accessible and truly responsive to community needs.”
This week on the AgeTech Collaborative blog, we present some highlights from the guide, for the benefit of both caregivers and the AgeTech companies aiming to serve them.
The Role of the Care Partner
Whether called “care partner,” “caregiver,” “ally” or even “chief optimism officer,” anyone who supports someone in their Parkinson’s journey in any way — physically, mentally, emotionally or otherwise — is a partner in their life and care. It’s a team effort that requires commitment and open communication from both caregiver and care recipient. It often requires figuring things out on the fly — but caregivers aren’t alone. Many are traveling the same road.
Anyone — a spouse, child, relative, friend or neighbor — can be a care partner, whether as the primary provider or a small but important part of a larger team. The role looks different for everyone, depending on the relationship to the care recipient, their symptoms and particular needs, and how they want to be supported. Nevertheless, common responsibilities include driving the loved one to and joining in medical appointments, supporting their hobbies and social connections, helping them process their worries and concerns, and facilitating activities of daily living (ADLs) such as cooking, cleaning and dressing.
As Parkinson’s progresses, support needs change. Emotional care while processing a diagnosis often takes center stage early on, when physical symptoms may be mild and the person with Parkinson’s and the caregiver alike adjust to a new reality and new roles. Later, when symptoms become more pronounced, support often includes assistance with ADLs, noting patterns in symptoms and behaviors for medical providers, and planning for what the disease means for the future of work, family or even crossing things off a personal bucket list.
Over the long term, caring for a loved one can become more hands-on and intensive, such as managing or administering medications, helping with exercise and assisting with mobility. As caregiving responsibilities multiply, it’s especially important for care partners to ask for help and to take care of their own physical, mental and emotional well-being.
How Caring Affects Care Partners
The feelings that accompany caring for a loved one with Parkinson’s often present a unique set of challenges. By learning to understand and work with their emotions, caregivers can protect their own health and provide steady, compassionate support.
The Emotions of Care Partnership
Providing care for a loved one with Parkinson’s raises a lot of emotions that can take a heavy toll on or even overwhelm caregivers. These feelings can be difficult to identify and process, especially as they evolve over time.
It can be helpful for caregivers to remember that:
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Emotions aren’t a “glitch in the system,” they are important signposts to help care partners pay attention to what is going on.
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Feeling a variety of emotions in the wake of a Parkinson’s diagnosis — including shock, fear, anxiety, helplessness, grief and more — is normal, and all of them are valid.
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When caregivers give themselves permission to acknowledge and name their feelings, those feelings can become useful tools for guiding decisions and nurturing their long-term well-being.
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Understanding how emotions (usually short-term and intense) differ from moods (typically more enduring but less intense) can help reveal the most helpful course of action.
Shifting Roles, Responsibilities and Relationships
In the wake of a Parkinson’s diagnosis, the settled roles and responsibilities in a relationship can be disrupted and realigned, especially as a person experiences physical or cognitive changes related to the disease. This adds another layer of complexity to the caregiving journey.
Communication and flexibility are key to managing these changes. Strategies for embracing evolving roles include:
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Staying respectful and avoiding language such as “You can’t do that anymore,” which infantilizes the care recipient
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Working as a team as long as possible, rather than taking over before necessary
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Adjusting expectations about what kinds of tasks a person living with Parkinson's can accomplish, or how thoroughly they can complete them
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Validating emotions, whatever they are, and not assuming you know why a loved one may be struggling with certain activities
The Emotional Impact on Care Partners
Burnout is one of the most common perils for those giving care to someone with Parkinson’s because it can be all too easy to prioritize the loved one over the care partner’s own needs. Yet it’s crucial for caregivers to maintain their own health and well-being over the long haul. Understanding the warning signs of burnout can be the first step in preventing it. Such signs include:
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Feeling lonely and isolated, which can increase stress, anxiety and depression
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Fatigue or exhaustion, even after a full night’s sleep
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Increased irritability or mood changes, such as depression or anxiety
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Withdrawing from family, friends and social connections
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Turning to unhealthy coping mechanisms such as drugs, too much alcohol or overeating
Fortunately, care partners have a number of strategies available to help them prevent burnout, such as:
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Regularly checking in with themselves to honestly assess how they are feeling, both physically and emotionally, then naming those feelings and working through them with their own support system
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Respect the importance of getting adequate rest and allowing themselves to take breaks from the responsibilities of care
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Speaking up in your loved one’s doctors’ appointments and asking for additional ideas, resources and support, not just for their loved one but also for themselves
The Pillars of Care Partnership
Everyone comes to care partnership in different ways. Whether a care partner is a spouse or adult child, a full-time or part-time care partner, or lives close by or far away, these guiding principles can help them and their loved one navigate the complexities of Parkinson’s — together.
Pillar 1: Talk Early, Talk Often
Open communication is crucial in any relationship, especially when care partnership is involved. Approaching conversations with kindness, empathy and love will create a space where care giver and care recipient can feel safe sharing difficult feelings or discussing sensitive topics.
Pillar 2: Ask for What You Need
Nobody can do everything on their own, and asking for help is a strength, not a weakness. Identifying areas where they need assistance and then enlisting family, friends and professionals to help can and allow caregivers time and mental bandwidth to nurture their own well-being and improve the overall quality of care.
Pillar 3: Commit to Your Own Self-Care
Self-care isn’t selfish; it’s self-preservation. It’s so crucial that care partners should see it as part of their caregiving job: Taking care of their own physical, mental, emotional and spiritual health prevents burnout and ultimately empowers care partners to be more effective. Setting boundaries is an important component of this — sometimes saying “no” to others is the kindest thing caregivers can do for themselves.
Pillar 4: Remember, You’re Only Human
Just like everyone else, caregivers are imperfect. Recognizing this fact and practicing self-compassion by reframing critical self-talk, resisting negative thoughts and remembering that others are traveling the same road with the same imperfections can help care partners remember that they are doing the best they can do — which is all anyone can ask.
Pillar 5: Embrace Life Outside of Parkinson’s
Care partners are more than just that — they still have the same interests, hobbies and relationships they had before Parkinson’s entered their lives. Partnerships thrive when each person maintains their own sense of self, so intentionally cultivating things outside the caregiving sphere that bring joy nurtures the caregiver’s life and benefits the care recipient as well.
Navigating the Everyday Experiences of Parkinson’s
Besides dealing with the complex physical and emotional challenges that often accompany a Parkinson’s diagnosis, caregivers have plenty of questions about the highly pragmatic aspects of caring for a loved one with Parkinson’s. Here are some of the most common.
How can I manage Parkinson’s day to day?
When Parkinson’s begins to disrupt ADLs such as showering or getting dressed, caregivers should work with their loved one to identify the changes and what precisely is behind it. Is the root problem physical, such as reduced coordination? Is it emotional, such as increasing apathy? Talking to the loved one’s doctor can surface solutions such as medication, physical therapy or engaging more in-home caregiving for help with those specific tasks.
Adapting is the key to success — such as adjusting expectations of what is and isn’t possible, or finding creative ways of modifying favorite activities, such as playing shorter rounds of golf or listening to audiobooks instead of reading physical books.
How can I address concerns about driving?
The symptoms of Parkinson’s can make operating a vehicle more challenging, which naturally raises concerns. Yet no one wants to have their independence further restricted, and family members tend to be reluctant to “take away the keys” of a loved one.
One strategy for engaging with the issue sensitively is to begin by gathering information: Observe them behind the wheel. Then, if necessary, align with others on how to broach the topic, approach the loved one gently, and expect to encounter a variety of emotions during the conversation. Finally, look into alternative transportation options to help them get around.
How can we plan for the future?
Some people with Parkinson’s and their caregivers prefer a one-day-at-a-time approach, while others prefer to plot out the entire Parkinson’s journey all at once. Either way, eventually most will need to turn to professionals for help. These often include financial planners, who can assess health care and other costs and create a long-term financial plan; an attorney to help navigate legal challenges and estate planning; health insurance providers to detail what is and isn’t covered by specific plans; and social workers, who can connect families with local resources such as housing options or professional caregivers.
The Michael J. Fox Foundation’s guide is a powerful reminder that care partnership is as much about sustaining the caregiver as it is about supporting the person living with Parkinson’s. For care partners, its insights offer practical, compassionate guidance for navigating the emotional and everyday realities of the journey. For AgeTech innovators, it offers something equally valuable: a clearer view into the lived experiences, pain points and evolving needs that should shape better caregiving solutions. "Facing Parkinson’s Together" serves not only as a resource for families, but also as a road map for building more responsive, human-centered innovation.
To learn much more about the Parkinson’s caregiving journey, read the guide.
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