The Parkinson's Outcome Project

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Parkinson’s disease (PD) is a neurological disorder that affects over 1 million people in the United States. Most common in men over the age of 60, PD often develops in adults with a family history of the disease.

If you or a senior loved one has Parkinson’s disease (PD), you may be interested in learning more about a groundbreaking, comprehensive study. An ongoing effort, the Parkinson’s Outcome Project, is the first of its kind. The purpose of this research is to examine and understand the impact of PD on the lives of those who have it.

Parkinson’s Outcome Project Participants

Because PD impacts people’s lives so differently, researchers sought to recruit those at varying stages of the disease to participate. Since 2009, researchers have been studying both newly diagnosed patients, as well as those diagnosed several decades ago.

Project participants constitute the most diverse sample ever recruited for a clinical study:

• 12,000 participants recruited from 5 different countries
• Dozens of patients who developed Parkinson’s before the age of 18
• More than 730 patients diagnosed with young-onset PD (<40 years)
• Over 500 patients who have lived with PD for over 20 years (80 percent of whom live at home)

Key Findings of the Project

An initial goal of the project was to explore whether or not the care a person with Parkinson’s receives affects how they experience the disease. Research findings indicate that it does.

Other key findings from the Parkinson’s Outcome Project are worthy of mentioning:

• Gender impacts caregiver support: Women were accompanied by paid caregivers at a more frequent rate than men. In comparison, men were less likely to have a paid caregiver and more likely to be cared for by a care partner. This is unfortunate for women with PD because research shows a decline in quality of life when a family caregiver is replaced by a paid caregiver.
• Exercise improves quality of life: Adults with PD who exercise at least 2.5 hours per week have better mobility and health-related life quality. These individuals also have a slower decline in the progression of the disease over time. Consistent exercise is the key.
• Antipsychotic medications and mortality risk: Taking antipsychotic medications is initially associated with an elevated risk of mortality. After three years on the medication, however, there seemed to be no significant difference in risk between patients who take antipsychotic medications and those who do not.
• Diabetes and PD combined can affect cognition: Adults who live with PD and diabetes have a higher risk of cognitive decline than those living only with Parkinson’s disease. People who have PD and other chronic health conditions, like arthritis or cancer, did not experience the same cognitive decline as those with PD and diabetes combined.
• Levodopa in conjunction with amantadine: Levodopa is a medication used to replace dopamine in people with Parkinson’s. Adults with more advanced PD, however, often develop a condition known as dyskinesia, which causes uncontrolled, involuntary movement. Preliminary study results indicate that another type of medication, amantadine, in coordination with the care of an expert, should be considered to treat dyskinesia.

If you would like to determine if a research center near you is participating in the Parkinson’s Outcome Project and seeking volunteers, you can consult the Investigators and Members of the Steering Committee site to look for a study location near you.

Assisted Living and Parkinson’s Disease

Should you need a more supportive environment for a loved one with Parkinson’s disease, we invite you to consider assisted living at Sunrise Senior Living. Call the Sunrise community nearest you or 888-434-4648 to learn how an assisted living community can help an adult with PD maintain their independence.