New Survey Highlights People with Parkinson’s and Caregivers’ Needs

(ARA) - In the United States, nearly one million people are affected by Parkinson’s disease, with one person diagnosed every nine minutes. That means that in the time it takes you to boil pasta, make a pot of coffee, or write a quick e-mail, one more person has been diagnosed.

Although many Americans are affected by this devastating disease, a new survey unveiled a need for increased education on key issues in the management of Parkinson’s disease. The “Parkinson’s Knowledge and Needs Exchange" survey was commissioned and funded by Boehringer Ingelheim Pharmaceuticals, Inc. GfK Roper Public Affairs & Media designed and conducted the survey on behalf of Boehringer Ingelheim Pharmaceuticals, Inc., in collaboration with the Parkinson’s Disease Foundation.

This survey is the first of its kind in a decade to explore the dynamics between people living with the disease, their caregivers and the neurologists who treat them. Key findings reveal a great need for the development of resources that can improve disease management, as well as the opportunity to educate people of existing resources. Some of these resources include support groups, educational Web sites and information available through physicians.

Communication is one of the key barriers to optimal disease management for the community.

While people living with Parkinson’s disease and their caregivers take an active role in discussions with their doctor, survey findings reveal a need for resources and tools to help enhance the quality of communication during doctor’s office visits. In fact, nine out of 10 people with Parkinson’s disease surveyed, would find a discussion guide with sample questions for the doctor to be a useful resource and 87 percent of caregivers agree. The survey also found that unless the patient and/or caregiver brought up particular issues, neurologists did not discuss them because they were concerned with overwhelming the patient and/or caregiver (59 percent of neurologists surveyed reported this).

Although the disease generally progresses slowly, over time even the most basic daily routines, like socializing with friends and family members, earning a living, and taking care of the home, may be affected. When asked, a majority of neurologists felt that financial concerns are the greatest obstacle for caregivers, and yet, this topic was only discussed with 35 percent of caregivers. Further, more than half of caregivers surveyed would like their physician to discuss the financial or legal impact more often during their disease management discussions. In addition, nearly one in four neurologists does not discuss healthy lifestyle changes with people living with Parkinson’s disease or caregivers, despite nearly all physicians (85 percent) thinking that maintaining a healthy lifestyle is an obstacle for both groups. Recent studies have shown that stretching, strengthening, and balance training may improve gait, speed, balance, and participation in activities of daily living, and regular exercise can help people with PD stay more flexible, improve posture, and make overall movement easier.

Education in and out of the doctor’s office.

It is important that people living with Parkinson’s and their caregivers continue to educate themselves and are able to find appropriate answers to their questions easily and effectively. In today’s fast paced, technology-based society, it’s easy to quickly become overwhelmed in a quest for answers. In fact, more than three-fourths of neurologists’ patients and caregivers state that a single resource would be helpful in disease management.

Resources that support people with Parkinson’s disease and their caregivers are available, and yet, more than half of all caregivers and patients surveyed are not taking advantage of the tools provided by patient advocacy groups and educational Web sites.

Support groups, educational Web sites and resources available through physicians can offer helpful advice on:
* Exercise: 92 percent of people living with Parkinson’s disease would be interested in a form of exercise designed for people with the disease
* Making a home Parkinson’s disease friendly: 84 percent of people with Parkinson’s disease and 81 percent of caregivers expressed interest in this topic
* Parkinson’s clinical studies: 63 percent of people living with Parkinson’s disease and 70 percent of caregivers said information from a Parkinson’s organization would motivate them to join a clinical trial. For more information please visit clinicaltrials.gov.

Also, the Parkinson’s Disease Foundation developed the Parkinson’s Information Service (PINS), a unique toll-free/online service, which connects people with questions about Parkinson’s disease to trained PDF information specialists.

Parkinson’s disease is a potentially debilitating neurological condition, impacting movement. The average age of a person diagnosed with the disease is 60. It is the second most common chronic neurological disorder in older adults after Alzheimer’s. Symptoms include tremor, muscle rigidity, slowed motion, shuffling gait, and a loss of facial expression. The symptoms vary from individual to individual, but become more severe over time. While promising research is being conducted, there is currently no cure for Parkinson’s disease.

Although there are obstacles and educational barriers within the Parkinson’s community, there are educational tools and resources, and future materials to support patients, caregivers and physicians. There are great opportunities to increase collaboration and begin overcoming some challenges and better manage this disease.

Courtesy of ARAcontent

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