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Implementing the Team Approach to Treating Parkinsonís
By Dr. Monique Giroux
Every person with Parkinson’s disease (PD) is different — not only in how he or she is affected by the disease, but also in how he or she reacts to the life changes that are associated with it. For this reason, treatment of Parkinson’s should focus not just on the disease but also on the patient’s needs and preferences. While a lone physician may be overwhelmed by the complexity involved in treating the many symptoms of PD, a team approach can foster holistic care, drawing on the strengths of individual team members.
What is so special about the “comprehensive care” team?
A comprehensive care approach goes beyond treating the movement and non-movement related symptoms of PD. It aims to work “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: movement, ability to perform daily activities, communication and social needs, success in relationships, self awareness, emotional health, wellness and even hobbies. 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.
Who is on the team?
The structure and orientation of a comprehensive care team may vary depending on the resources that are available, and its members may need to be changed as the disease progresses. One thing is certain: central to the success of treatment focused on living well with PD is active participation by the person with Parkinson’s. These individuals, and their family and loved ones, are the most critical members of the team. Other team members may include physician assistants, nurses, social workers, physical therapists, occupational therapists and speech and language pathologists. Creative therapists in art, music and recreation also play an important role, and some teams include spiritual counselors, psychologists or neuropsychologists.
In a more global sense, the patient’s social network and community can provide additional resources to support the team. For example, many communities offer support groups, exercise groups or senior centers that could be part of the treatment plan.
How do you find a team?
Some, although not many, specialized Parkinson’s care centers already have interdisciplinary teams. Even if they do not, a patient and his or her family can still assemble their own team.
This task may seem overwhelming. To begin, it may help to prioritize concerns and begin with a specialist who addresses those issues. To find a Parkinson’s specialist, ask your doctor for a referral and use the experience of others who live with Parkinson’s disease, such as members of a support group or an online PD listserv. You can also contact PDF’s Parkinson’s Information Service (PINS) for a listing of specialists by calling the toll-free helpline at (800) 457-6676.
Here we describe some of the “team members” a person with PD may work with at various stages of the disease.
The medical team begins with the doctor, and includes nurse specialists or physician assistants. These clinicians play a significant role in long-term follow-up and complement the physician’s care. Such clinicians are also an important resource for counseling, education and long-term management and can be a source of support for the caregiver as well as the person with Parkinson’s.
Physical therapists serve to help the patient address issues such as strength, endurance, movement control, flexibility, gait, balance, freezing and fall prevention. In addition, the physical therapist can custom-tailor a home exercise program to improve mobility problems and prevent or reduce the impact of future anticipated problems — especially early in the disease. Care partners are often included to help with everyday activities such as getting in and out of chairs, beds and cars.
Occupational therapists help a person with Parkinson’s manage everyday chores at home, at work or in the community. They play a key role in home safety, offering practical advice and devices to help with daily activities. Occupational therapists can also assess a work environment and use of technology, such as computers, and they often work with clients on cognitive training, driver’s evaluation, caregiving needs and time and disease management.
Speech and swallowing pathologists are specialists in communication who can help the patient with voice problems, especially if treatment is initiated soon after the emergence of soft or monotone voice patterns. A speech therapist manages all aspects of communication, including nonverbal communication such as facial expression. One popular resource is the Lee Silverman technique, a form of speech therapy that was designed specifically for people with Parkinson’s disease.
Swallowing problems can also occur, especially in advanced disease. A swallowing specialist can evaluate and treat problems using a combination of modified diet, altered swallowing techniques and exercises.
Social workers and counselors focus on the psychosocial and behavioral aspects of disease, including coping therapies and family needs. Supportive therapy, stress management, biofeedback and coping strategies can significantly improve physical and psychological well-being in any chronic illness. These individuals may help to identify home health needs, disability and work-related concerns and community resources, and work to determine the need for hospice care, respite services, assisted living and nursing homes.
Dieticians can help with unwanted weight loss or weight gain, constipation, vitamin deficiency and supplementation, protein-related medication interactions and dehydration. They may also be able to recommend dietary changes to reduce swallowing problems.
A neuropsychologist evaluates cognitive (thinking) skills by employing tests to identify and measure cognitive strengths and weaknesses. Based on findings from these tests, the psychologist can then put in place a treatment plan based on enhancing cognitive strengths and working with weaknesses.
Creative therapists are playing a bigger role on the team than they used to. These specialists include therapists in art, music, dance and recreation who work to use creative expression to influence physical and mental wellness and healing. Recreational therapy can also help a person enhance his or her hobbies and improve the quality of leisure time.
Spiritual and community leaders who are available through community programs are often overlooked, despite the fact that they can be a valuable source of strength and support. If your community has a senior center, or a wellness or exercise program — take advantage of it! If your community lacks specific programs for PD, seek out a support group and work with other members to create your own programs. If there are no support groups in your area, consider starting one (for more information on this, call PDF at (800) 457-6676).
At what stage can a person with Parkinson’s benefit?
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.
The Early Years with Parkinson’s
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.
When and if Disability Increases with PD
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 smart 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.
Living with Advanced Parkinson’s
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 complete team of Parkinson’s disease professionals will help you achieve the greatest possible quality of life while effectively managing your symptoms and disease.
Dr. Monique Giroux is the Medical Director of the Booth Gardner Parkinson’s Care and Movement Disorders Center in Kirkland, WA. Her focus of care and research is on the development of interdisciplinary rehabilitation, team medicine and wellness for PD.