Parkinson's Care Partner Resources

As a Parkinson's care partner, you are an essential member of your person's medical and care teams. While most care partners are spouses, children, siblings, and parents, even friends can be part of the care team. Your role as a Parkinson's care partner will evolve over the years; therefore, we want to offer you resources and action plans to help YOU live well while also providing the best care possible for your loved one.

Here, you'll find a collection of our most popular and helpful Parkinson's care partner resources.

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Care Partner Monthly Meetup

Join us the first Tuesday of every month for a one-hour session just for care partners. Connie Carpenter Phinney, along with other care partner special guests, will discuss the concerns, challenges, and questions that many Parkinson’s care partners have today.

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CARE PARTNER TRAINING PROGRAM

A recent survey of our community indicated that care partners want and need specific training on managing advanced symptoms and medications, advice on how to manage acute symptoms and episodes, and practical ways to manage not just Parkinson’s care but other health-related concerns.

every victory counts® manual for care partners

In our two decades of working to help people live well with Parkinson’s, we have met tens of thousands of Parkinson’s care partners. With you, we have celebrated, laughed, cried, struggled, and overcome challenges. We have learned strategies to help people with Parkinson’s live their best lives. And we have been asked for advice on all aspects of Parkinson’s care. Throughout our new Every Victory Counts Manual for Care Partners, we share some of the most frequently asked questions we receive from Parkinson’s care partners, with responses from us, from Parkinson’s experts, and from Parkinson’s care partners.

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The Parkinson's Care Partner Rulebook

Create a personalized rulebook for living well for you and your person with Parkinson's.

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The Parkinson's Care Partner Digital Toolbox

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Advice for Parkinson's Care Partners

In this episode of The Parkinson's Podcast, Kelsey Phinney talks to her mom, Connie Carpenter Phinney, about being a Parkinson's care partner for over 18 years.

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Notes from the Care Partner Meetup: March 2024
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We are excited to share information about a new research study specifically designed to support caregivers, which is now open for enrollment!

PERSEVERE is a national study funded by the National Institutes of Health, led by Dr. Jori Fleisher at Rush University Medical Center in Chicago, IL, which is testing an educational program for family caregivers of people with Parkinson's Disease with cognitive impairment, Parkinson's Disease Dementia, Dementia with Lewy Bodies, or Lewy Body Dementia. PERSEVERE will test whether a disease-specific, caregiver-centered educational intervention improves caregiver knowledge, confidence, strain, and health outcomes – and whether it helps people living with Parkinson's Disease Dementia, Dementia with Lewy Bodies, or Lewy Body Dementia, too.

Family caregivers will receive weekly educational guidance through a 12-week curriculum with resources and activities. All participation is virtual and scheduled when it works for you. There are no in-person visits and the person with Parkinson's Disease, Dementia with Lewy Bodies, or Lewy Body Dementia does not participate—just caregivers. Caregivers fill out online surveys and assessments at baseline and every two weeks throughout their involvement in the study, including a six-month follow-up period after the 12-week curriculum.

Interested in learning more?

Visit https://redcap.link/PERSEVERE1 to watch a video providing more information about the study and hear testimonials from prior PERSEVERE study participants. Email [email protected] with questions.

Help spread the word!

Do you know someone who might be interested? Please share this research opportunity with your community. The PERSEVERE curriculum has been designed by and for caregivers across the caregiving journey, including those who were past caregivers.

Curious to see if you are eligible?

Complete the pre-screening survey at https://redcap.link/PERSEVERE1.

Connect with an Ambassador

Our Ambassadors connect with individuals and families looking for support and community to help them live well with Parkinson’s. The following Ambassadors are specifically interested in the role of care partners and are available to speak with you through email, phone, video conference, and in person.

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