What is advanced Parkinson’s?
It has been said, “If you’ve met one person with Parkinson’s, you’ve met one person with Parkinson’s.” There is no one definition of what it means to have “advanced” Parkinson’s disease (PD); everyone is unique, and the disease progresses differently from person to person.
However, there are several scales used in research and by health care providers to measure how severe the disease is and how far it has progressed. In general, when a person with Parkinson’s is no longer physically independent, the disease is considered advanced.
This means that the person has 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.
There is no one-size-fits-all approach to taking care of someone with PD. It is a journey. The purpose of this site is to provide practical suggestions for coping with the complex problems that arise as a result of advancing Parkinson’s disease. CareMAP is your guide to Managing Advanced Parkinson’s.
If you care for someone who has Parkinson’s disease (PD), you are not alone. In the United States, 60,000 new cases of PD are diagnosed each year, adding to the one million people currently living with PD. Worldwide, about 10 million people have the condition. And many of them receive care from a spouse, adult child, sibling, partner or friend. According to the National Alliance for Caregiving, more than 34 million American adults have served as an unpaid caregiver for someone over 50 years old within the last year.
Living with Parkinson’s is a daily challenge. The incidence and severity of PD symptoms vary from day to day, even from one time of day to another. As a caregiver, it takes skill and patience to know when to assist with a task and when to simply allow the person more time to do the task independently.
Every person affected by the disease – both patients and their care partners – experiences it in a unique way. As a caregiver, you have rights and responsibilities to make the care partnership most productive with the least amount of stress and conflict. Preparation is key in all respects: emotional, financial and physical.
Caring and Coping
The Parkinson’s Foundation produced a workbook, complementary to CareMAP, to provide additional support and guidance as you focus on your dual role as a caregiver: caring for someone with Parkinson’s disease, and taking care of yourself. While CareMAP is specifically for caregivers of people with advanced Parkinson’s, Caring and Coping is a comprehensive guide for caregivers of people with Parkinson’s at any stage. Request your copy on the Parkinson’s Foundation website or by calling the Helpline at 1-800-4PD-INFO (473-4636).
Many people gave their time and expertise to make CareMAP possible. Special thanks go to the following people who were instrumental in developing and reviewing the site:
- Rose Wichmann, PT, Manager, Struthers Parkinson’s Center, Golden Valley, MN
- Joan Gardner, RN, BSN, Clinic Supervisor, Struthers Parkinson’s Center, Golden Valley, MN
Medical review of the site was conducted by Dr. Michael Okun, Medical Director of the Parkinson’s Foundation.
Additional thanks to those who reviewed the site and shared resources:
- Daniel E. Davis, MBA, LSW, President and CEO, National Parkinson Foundation Ohio
- Lennore A. Bevis, caregiver
- Pam Palmentera, LCSW, Coordinator and Clinical Social Worker, Northwestern University Parkinson’s Disease and Movement Disorders Center, Chicago, IL
This site is made possible through generous donations of thousands of individuals affected by Parkinson’s and by grants from: