We recently stumbled across the National Parkinson Foundation’s CareMAP resources at caremap.parkinson.org. CareMAP stands for Care in Managing Advanced Parkinson’s. “Advanced PD” is when a person with Parkinson’s Disease (PD) is no longer physically independent. Of course all of the Brain Support Network disorders — LBD, PSP, MSA, and CBD — have many similarities with advanced PD.
BSN volunteer Denise Dagan evaluated the CareMAP resources and finds lots to recommend:
* website – caremap.parkinson.org
* worksheets from the website – caremap.parkinson.org/worksheets
* “Caring and Coping” booklet
Take it away Denise…
In 2014 the National Parkinson Foundation (NPF) launched CareMAP [Care in Managing Advanced Parkinson’s] but it didn’t seem to make a big splash at the time. Maybe that’s because you can’t find it from the NPF website unless you know where to search. Now that it has come to my attention I want to share with you that it is a well thought out, practical, comprehensive and user friendly resource.
It does a very good job of its intended purpose, which is to provide “practical suggestions for coping with the complex problems that arise as a result of advanced Parkinson’s disease (PD).” CareMAP describes advanced PD as the point when a person with Parkinson’s is no longer physically independent. They have “serious problems with mobility and cannot complete activities of daily living by himself or herself. Cognition changes, specifically dementia, are also a hallmark of advanced PD.”
NPF calls the tone of CareMAP a ‘dynamic format,’ but I found the gentle, well paced, matter of fact videos (found only in the Home Care area) to be like inviting a very experienced care specialist into my home for personal instruction. The video streaming functioned well for me. I could stop, replay, or skip forward with no waiting for the videos to load. Videos are available in Spanish and easy to find from the ‘Espanol’ tab on every page.
Here are some excerpts from the original press release describing the site’s purpose and structure:
“Using a dynamic format combining videos and articles, the CareMAP website, caremap.parkinson.org, 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 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.”
“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.”
The more I explored CareMAP, the more useful information I found, not only in the videos and articles in the main body of each page, but in the margins. Each video and article page has blue boxes along the right side of the screen with, “More in This Category,” and “Related Information.” Links under these headings take you to more videos and articles, tip sheets, webcasts, worksheets, online brochures, CareZone, Caregivers Forum, etc. The resources seem endless.
There is even a free comprehensive companion workbook, “Caring and Coping,” available to either order by mail, or download in PDF format at:
This workbook is designed “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 addresses caregiving questions and concerns from diagnosis through end-of-life care, making it a useful tool for people at any stage of caregiving.”
The workbook includes both ’Tip sheets’ with practical pointers from every day care to travel concerns, and ‘Worksheets’ that “help you keep important information organized and easily located. There are worksheets to prepare for medical appointments, keep track of medications on a scheduling sheet, a symptoms diary, even worksheets for interviewing and training hired caregivers.”
Worksheets can be printed from: caremap.parkinson.org/worksheets
CareMAP (or parts of it) is definitely worth bookmarking, and I highly recommend taking a look at the companion workbook, as well.
– Denise