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Psychosocial Factors
in the
Treatment Of Parkinson's Disease
Page 1 of 3
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by
Robert G. Feldman, M.D.
Peter Mosbach, Ph.D.
Cathi-Ann Thomas, R.N., M.S.
Linda M. Perry, R.N., M.Ed.
This is an excerpt of Chapter 14 from the book
The Comprehensive Management of Parkinson's Disease
published 1995 by
Demos Vermande Publications, 386 Park Avenue, New York, NY 10016
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Parkinson's disease (PD) becomes an unavoidable intrusion in the
life of the affected person and others with whom s/he is
involved.
The impairments in daily functioning of the patient and the
changes in each family member's concept of her/his life's plan
result in the realization that treatment of Parkinson's disease
requires more from the health care team than the recognition of
the signs and symptoms, making a diagnosis, and prescribing
medication.
Each person with Parkinson's disease has her/his unique
experience, which deserves an individualized treatment plan.
What is universal, however, is the need for each person to know
as much as possible about the condition and how certain insights.
anticipations, and adjustments lead to more effective living with
Parkinson's disease.
Since the individual with Parkinson's disease is a member of
several networks (family, social, work), her/his malady also
becomes a problem for these people.
A better understanding of Parkinson's disease by everyone
concerned will result in more effective coping, proper long-term
management, and a more successful therapeutic outcome.
Members of the health care team, including the neurologist, must
appreciate that a diagnosis exists in the context of all other
aspects of the patient's life.
At each stage in the progression of the illness, the patient
deals with actual and perceived losses, that require special
considerations and place unique burdens on the patient, members
of her/his family, the physician, and members of the healthcare
team.
A principal goal for all caregivers is to understand the impact
of the disease and to anticipate the needs of the patient and
her/his family by guiding them to helpful solutions throughout
the course of Parkinson's disease.
The condition does not go away after the diagnosis is made. The
formalization of a diagnostic label triggers inevitable reactions
and thoughts that alter the patient's prior conception of her/his
life's plan.
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The Coping Process
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The complexity of Parkinson's disease presents numerous stresses
that need to be addressed by the patient and her/his family.
Some individuals are able to utilize techniques successfully to
deal with various stresses on a daily basis.
Others, who have not developed an effective set of mental
mechanisms for adapting to changing environmental (external)
demands in order to meet personal (internal) needs. have the
greatest difficulty accepting the diagnosis of Parkinson's
disease.
They refuse to accept or 'own' the problem and become a 'victim'
of this malady. They may attempt to place the responsibility for
their treatment on family members and health care providers.
Coping is the capacity to successfully manage an actual or
potential problem by recognizing the need for adjustment and
achieving it, and requires cognitive and behavioral efforts to
master, tolerate, reduce, or minimize internal and external
demands, and the conflicts among them.
Long-term management of Parkinson's disease is usually more
successful in the patient who previously has had effective
techniques for coping with stressful life events; for those who
have not, it is the responsibility of each health care provider
to assist in the coping process through the use of multiple
approaches.
The patient with Parkinson's disease must develop and retain a
sense of control over her/his life's plan. S/he needs to learn
how to plan daily activities around the duration of action of
medications and not be 'surprised' by the unpredictability of the
effectiveness of their pharmacological treatment. Additionally,
the patient must have information about the illness, including
symptoms, prognosis, and available alternative treatments.
The perception of having control diminishes the likelihood of
becoming a victim and reduces the sense of hopelessness that
accompanies a state of dependence. Presented with information
about her/his illness, a patient may initially find it
stress-inducing, but those who have access to such information
about their illness become active partners in managing their case
with members of the health care team and have better long-term
outcomes than patients who do not have access to such
information.
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The Assessment Process
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In order to better understand the psychosocial stresses facing an
individual with Parkinson's disease and to formulate an effective
intervention plan, it is crucial to conduct a comprehensive
assessment of the patient, her/his spouse or significant other,
the primary caregiver, as well as children or parents.
In this way, all those affected directly or indirectly share
similar information upon which to construct a treatment and
support plan.
It is important at the onset of treatment for the patient to
learn that helping her/him to most effectively deal with
Parkinson's disease requires the assistance, understanding, and
cooperation of other members of their social network.
Trying to 'keep it a secret' only impedes the adjustment process.
The patient and her/his disease must be considered in the context
of the patient's concept of disease, the family environment,
educational and work background, premorbid personality and
life-style, and approaches to problem solving.
... to Page 2 ...
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1999/06/09
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janet paterson
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janet paterson
52 now / 41 dx / 37 onset
PO Box 171 Almonte Ontario K0A 1A0 Canada
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