National Survey Sheds Light on the Emotional Highs and Lows of the Parkinson’s Care Partner Experience

Knowing that care partners play a critical role in the lives of people with Parkinson’s, Kyowa Kirin (a Davis Phinney Foundation 2020 Peak Partner) recently launched survey solely for this group of essential supporters. Their goal was to better understand the role care partners play in the lives of those living with Parkinson’s, areas where care partners need more support, and what gaps in knowledge exist for Parkinson’s care partners in terms of supporting their loved ones.  

Data collected from the 695 Parkinson’s care partners who completed the survey showed that being a Parkinson’s care partner comes with both significant emotional gains and emotional tolls. Here are a few key findings from the survey: 

The Good and the Bad
78% of caregivers feel that this role is the most rewarding one they've ever had, but nearly as many say it has also negatively impacted their emotional and mental health. 
Help Needed
Despite feeling lonely and being overloaded with daily responsibilities, Parkinson’s care partners are hesitant to ask for help even though they feel they need additional support.
Balancing Act
Four in five care partners agree that they’ve had a very difficult time adjusting to life as a care partner, and several added that balancing their care partner role and their career has been the most challenging aspect of life as a care partner.
Hope for Guidance
Although 90% of those surveyed are optimistic about Parkinson’s treatments, they want more guidance about managing medications.
A Second Full-time Job
Parkinson’s care partners spend an average of 45 hours per week caring for their person with Parkinson’s, with their top responsibilities being offering emotional support, managing medical appointments, providing transportation to/from appointments, and helping with memory.
ww
Ask and Notice
Though men discuss symptoms with their person with Parkinson’s more often, women are more confident in recognizing certain non-motor symptoms, including fatigue, constipation, and hallucinations.

Nearly a third of care partners surveyed said that addressing their own fears and anxieties and taking care of their own mental health has been challenging. Many also feel that caring for a loved one with Parkinson’s means “sacrificing other relationships and personal life balance,” and that being a care partner often makes them feel lonely.  

HOW CAN YOU LIVE WELL AS A PARKINSON’S CARE PARTNER? 

As a care partner, you aren’t alone. There are numerous strategies for supporting your loved one with Parkinson’s while also looking after your own wellness. To get started…

  • Check out our care partner digital toolboxrulebook, and many more care partner resources here
  • Join our ongoing conversation about care partners on Facebook. 
  • Build your own support team and ask for help when you need it. 
  • Connect with other care partners through support groups (our Ambassadors can help if you don’t know of a group located near you). 
  • Remember that self-care is essential and will make you an even stronger part of a Parkinson’s care team.  

 WANT MORE CARE PARTNER TOOLS? 

Join us on November 12 for our Mental Wellness for Parkinson’s Care Partners webinar to learn new ways to preserve your mental health as you support your person with Parkinson’s. In this event, social worker Elaine Book will discuss common challenges of being a Parkinson’s care partner, signs you might be on the verge of burnout (and how to avoid it), ways to reduce care partner stress, and a roadmap for daily mental health care. You can register for the webinar here.  

Related Posts