Every person with Parkinson's disease (PD) is different - not only in how they are affected by the disease, but also in how they react to the life changes associated with living with PD.
That's why we believe the treatment of Parkinson's should focus not just on the disease - but also on the patient's needs and preferences. Where a single physician may be overwhelmed by the complexity involved in treating PD's many symptoms, the team approach will draw on the strengths of individual team members.
A comprehensive care approach goes beyond treating the symptoms of PD. It works "outside the box" to reduce disability, maintain independence and enhance safety.
Members of the treatment team concentrate on all aspects of the patient's needs, including:
Counseling, education and support are important functions of the team, and comprehensive care is enhanced when the patient takes an active role in his or her care. This combination of individual initiative and group concern can strengthen hope, successfully address issues related to loss and life changes and aid adjustment to daily frustrations and new challenges.
The following FAQs should answer your questions about the value of comprehensive care.
It is commonly believed that people with advanced PD are the only ones who will benefit from a comprehensive evaluation. This is not necessarily true. With the appropriate goals, motivation and expectations for treatment, individuals in all stages of Parkinson's disease will benefit.
In early-stage disease, the focus is not so much on movement problems and disability as it is on maintaining health and wellness. Because PD is a progressive disease, it should be at this early stage when patient-centered self-management is introduced. The emphasis is not typically on "fixing" a problem but on preventing future problems. It is about maintaining hope, setting goals and establishing control. Awareness and education are critical to self management, but education alone is not enough. Education includes active participation by teaching action-oriented problem-solving techniques.
At this point, it can be helpful to create a program that addresses current and possible future problems. Continue gathering information about PD symptoms, treatments and side effects, and implement an exercise program. Think about lifestyle management, including stress reduction and coping skills, and be sure to practice general health maintenance by getting adequate sleep, exercising and keeping a healthy diet. People in early-stage disease may also want to obtain an occupational assessment and a social evaluation including home care needs and social support networks.
After several years of living with Parkinson's, challenges to quality of life may increase in such areas as movement, mood, communication and socialization. At this stage, the team may need to include a specialist in gait and balance therapy, and fall prevention techniques. Therapists in speech and communication may need to be consulted, perhaps along with experts in swallowing, diet and cognition. If driving becomes a problem, it is wise to undergo a professional assessment. And if getting around the house becomes more difficult, have your home evaluated for safety while figuring out how much help you may need with home and work activities. A "complete-care" approach can include a reassessment of hobbies and recreational activities and adaptation to changing roles in one's life and family.
In the later stages of Parkinson's, the focus turns to managing the condition and finding ways to optimize the quality of life. Among the issues that may face people with Parkinson's and their families at this stage are bed and seating comfort, transfers to and from furniture and home health needs. The care team will want to explore and implement palliative and comfort care measures. This is also the time to gather information about home living arrangements such as assisted care, hospice, respite, adult day care and nursing home care.
Emotional and social support issues will become especially important at this stage of the disease, both for the person with Parkinson's and for the care partner. Care partners should have the proper training and be sure to take care of themselves to avoid burnout.
The tasks may seem daunting, but assembling a team of Parkinson's disease professionals that you can work with will help you achieve the greatest possible quality of life while effectively managing your symptoms and disease.