The National Parkinson Foundation Launches CareMAP: An Online Guide to Caring for Someone with Advanced Parkinson’s Disease
Miami— The National Parkinson Foundation (NPF) announced the launch of a new online guide, CareMAP, which provides practical suggestions for coping with the complex problems that arise as a result of advanced Parkinson’s disease (PD).
“Caregivers often include a spouse or a partner juggling the demands of work, home and care for a loved one,” said Michael S. Okun, MD, NPF’s National Medical Director. “With the advanced stages of Parkinson’s, the strain on the caregiver can be substantial.”
Using a dynamic format combining videos and articles, the CareMAP website, parkinson.org/outcomes, explores the key elements of Parkinson’s care. Since the disease progress slowly, with caregivers gradually taking on more responsibilities over time, the site gives caregivers—family members, friends, volunteers or paid professionals—the tools and resources they need to successfully transition from one stage of caregiving to the next.
“The biggest challenge for me as a caregiver has been switching from care partnering a little bit to really becoming full-time. In the last 15 years, I’ve learned that I had to give up a lot of things, and it wasn’t really a major challenge, it’s just what we needed to do,” said Lyle Lutz, who is providing home care to his wife, Lavon.
The website is organized into six key areas: Home Care, Outside Help, Caring from Afar, Caring for You, End of Life and Resources. Visitors can explore the topics that are relevant to them at any particular time in their caregiving journey.
“We have a motto: the right information at the right time,” said Rose Wichmann, PT, Manager of the Struthers Parkinson’s Center, an NPF Center of Excellence. “This website will allow caregivers to get answers quickly, without having to wait until the next doctor’s appointment in two or three months.”
How-to videos offer practical tips and messages about responding to everyday challenges, such as helping someone get out of bed or get dressed. Interviews with caregivers showcase their unique stories about how the disease has affected them.
A companion workbook will be available later this year to help family caregivers organize all the information they will both receive and generate over the course of their loved one’s Parkinson’s journey. The workbook will address caregiving questions and concerns from diagnosis through end-of-life care, making it a useful tool for people at any stage of caregiving.
The CareMAP team had help from leading Parkinson’s specialists — Rose Wichmann and Joan Gardner, both from Struthers, and Michael Okun, MD, of the University of Florida — as well as people affected by Parkinson’s. This project was made possible by grants from Abbvie and ACADIA Pharmaceuticals.
About the National Parkinson Foundation (NPF)
Founded in 1957, the National Parkinson Foundation's mission is to improve the quality of care for people with Parkinson's disease through research, education and outreach. NPF has funded more than $180 million in care, research and support services. For more information about NPF, visit www.parkinson.org, or call the NPF Helpline at 1-800-4PD-INFO (473-4636).
About Parkinson's Disease (PD)
Affecting an estimated one million Americans and four to six million worldwide, PD is the second most common neurodegenerative disease after Alzheimer's and is the 14th leading cause of death in the United States. It is associated with a progressive loss of motor control (e.g., shaking or tremor at rest and lack of facial expression) as well as non-motor symptoms (e.g., depression and anxiety). There is no cure for PD and 60,000 new cases are diagnosed each year in the United States alone.