Re-post: Psychosocial Factors in the Treatment of PD

[janet paterson <janet313@xxxxxxxxxxx>]

Psychosocial Factors in the Treatment of PD

originally posted to the pd mailing list 970919

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Psychosocial Factors in the Treatment of Parkinson's Disease:
A Contextual Approach
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by
Robert G. Feldman, M.D.,
Peter Mosbach, Ph.D.,
Cathi-Ann Thomas, R.N., M.S., and
Linda M. Perry, R.N., M.Ed.

This is an excerpt of Chapter 14 from the book
The Comprehensive Management of Parkinson's Disease, 1995
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 behavioural 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.

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Patient's Concept of the Disease
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Many patients with Parkinson's disease may recall observing friends, relatives, 
or acquaintances during the pre L-dopa era when there was no effective 
treatment for Parkinson's disease.

Individuals with this disorder frequently had significant levels of disability, 
a potentially frightening image to an observer.

Such memories may affect the patient's mental model of Parkinson's disease, as 
they may initially perceive it as a disabling and untreatable illness.

A patient's cognitive model or preconceived notions of higher illness or 
treatment is often inconsistent with medical reality, and their beliefs may 
lead to added stress and ineffective coping strategies.

It is, therefore, important to assess the patient's concept of her/his own 
condition.
Although patients with Parkinson's disease share many common characteristics, 
the impact of each symptom on an individual patient's life may be vastly 
different.

What is important to one patient may not be important to another.

An inventory should be made of those specific activities the patient finds 
difficult to perform, those that interfere with her/his ability to perform work 
tasks, or those that alter higher physical appearance.

A specifically perceived disability becomes a 'target for therapy' to be used 
as the outcome measure of efficacy of treatment.

Improvement after doses of medication or after therapeutic intervention can be 
looked for in areas of functioning, such as disturbances of motor control, 
gait, posture, arm swing, bimanual tasks, eating, dressing, impaired 
socialization, facial expression, volume of voice, conversational interaction, 
and depression.

Reaching agreement with the patient and their family about the priority of 
given targets of therapy ('things to be fixed') enables the physician, 
therapists, and patient to share the expected goals of specific medication 
dosages and therapy interventions.

Lack of agreement about this may result in misunderstanding and disappointment, 
since the total 'cure' may not be achieved as anticipated by everyone.

The patient and her/his family also usually have a concept of what they expect 
from the physician and other members of the health care team.

Among those expectations is that the physician will listen to the patient and 
respect her/his input about the condition and will invite active participation 
in decision making.

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Family Environment
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It is also important to assess the patient's relationship and geographic 
proximity to other relatives such as parents, children, and siblings.

The availability of family members who are able to provide both practical 
assistance and emotional support is one of the best predictors of success in 
effectively managing a chronic and progressive illness such as Parkinson's 
disease.

Family interactions become especially important to the patient when 
embarrassment about symptoms leads to social withdrawal and leaves patients 
with family members as their primary source of social contact.

The intensity of familial relationships increases proportionally in importance 
as level of disability increases.

The strength of familial relationships and clarity of interpersonal 
communication are severely tested by stress later in the disease process.

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Educational and Work History
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The physician and other members of the health care team can use the educational 
background or vocational interests of the patient to improve communication and 
thus enhance the understanding of information presented to the patient in 
regard to their treatment and prognosis.

It is useful to explain the disease process and treatment approaches in an 
appropriate frame of reference to which the patient can relate, using 
analogies, metaphors, and diagrams, rather than highly scientific jargon 
comprehensible only to the 'insider' health care professional.

When communicating with a patient, never assume prior knowledge, regardless of 
the patient's profession or education level.

A patient seeks explanations, directions, and coaching, and it is often the 
most sophisticated patients who need the most explicit directions, reassurance, 
and support.

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Premorbid Personality and Coping Style
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Previous studies have suggested that patients with Parkinson's disease have a 
specific premorbid personality and coping style.

In a study of identical twins discordant for the illness, the twin with 
Parkinson's disease was more anxious than the undiagnosed sibling. Patients 
with Parkinson's disease have often been described as tense, overcontrolled, 
and having a perfectionist character style.

For patients with Parkinson's disease who have an obsessive-compulsive 
personality type, their coping style is often reflected by an obsession about 
their medications.

In particular, such patients are often fanatical about the time they take their 
medications.

Such compulsion about the pills and the 'clock' needs to be recognized as that 
patient's particular attempt to cope and to retain control of her/his 
environment and circumstances.

Coping strategies can be divided into two types:

(1) problem-solving responses,
which are aimed at changing conditions of the situation, and

(2) emotion-focused responses,
which are intended to reduce the person's unpleasant or fearful feelings about 
themselves and aspects of their situation that they cannot change.

Effective coping usually involves both problem-solving and emotion-focused 
strategies.

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Coping Needs in Different Stages of Parkinson's Disease
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Individualization of Therapy

Each patient and family member will have different medical and psychosocial 
needs depending on medical history, family history, level of psychological 
functioning, and history of how well they have previously coped with stress.

>From the initial contact with the treating neurologist, the importance of 
>accepting responsibility for her/his condition is emphasized to the patient.

We encourage the acquisition of as much knowledge as possible about her/his 
Parkinson's disease and its treatment, so that s/he becomes an active partner 
in the treatment and becomes a 'non-victim'.

Therapy for the patient with Parkinson's disease must be individualized to 
reflect the stage of progression of the disease.

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The Early Stages and Previously Untreated Patients
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The previously untreated patient comes to the neurologist with great anxiety.

The stress of the disease actually begins before the formal diagnosis of 
Parkinson's disease is made, as many patients note changes in their body and 
subtle impairments long before presenting to a physician.

Some patients exhibit reduced facial expression and overall loss of energy and 
are often initially diagnosed as having depression.

It may take one or more years of physician visits before a diagnosis of 
Parkinson's disease is established.

During the time of uncertainty, patients may experience, for example, a fear of 
having a brain tumor.

For some patients, a definitive diagnosis of Parkinson's disease serves as a 
relief that they do not have a more serious or potentially fatal disorder.

It can also be a relief to receive an explanation for their symptoms.

When initially diagnosed with Parkinson's disease, most patients have little 
knowledge of the disease and do not know what to expect.

Some patients have simply been told, 'You have Parkinson's disease, here is 
your prescription, come back for an appointment in six months'.

This can be a distressing experience for many patients who feel overwhelmed and 
intimidated by the neurologist and are reluctant to ask questions.

Personal discussion with a neurologist and nurse practitioner is absolutely 
necessary in the period following the initial diagnosis of Parkinson's disease.

Reading generic articles about Parkinson's disease may be frightening for the 
early stage patient; therefore, carefully selected written materials 
appropriate to the stage and particular areas of concern should be provided to 
the patient and her/his family.
Several patients with Parkinson's disease have written very useful books about 
their personal experiences with the disease. They may be beneficial for the 
newly diagnosed patient as they provide insights not available elsewhere.

One example is 'Living Well with Parkinson's', by Glenna Atwood. which provides 
a clear account of the author's struggle and successes encountered throughout 
her years with Parkinson's disease. It is accurate and frank, yet personal and 
helpful.

Pamphlets published by patient support organizations and pharmaceutical 
companies can also be informative.

Patients are encouraged to join lay support organizations such as [in the USA] 
the American Parkinson's Disease Association (APDA), the United Parkinson's 
Disease Foundation (UPF), and the National Parkinson Foundation (NPF).

By joining these organizations, patients are able to receive current 
information about developments pertaining to Parkinson's disease.

Newly diagnosed patients are encouraged to become active in support groups 
appropriate to their age and stage of illness and to share experiences with 
others.

At the early stages of Parkinson's disease, most individuals are physically and 
cognitively able to continue participating in nearly all social, vocational, 
and recreational activities.

Some patients tend to withdraw from activities due to embarrassment about their 
symptoms, especially tremor.

In the early stages of their illness, some patients are afraid to let others 
know that they have Parkinson's disease, and they devote significant effort to 
hiding their symptoms.

Attempting to conceal symptoms can lead to increased anxiety, which in turn can 
cause an increase in the symptoms of Parkinson's disease.

Those patients who have been able to inform others about their illness, its 
symptoms, and treatment tend to be the individuals who cope best at the early 
stages.

Case summaries of two individuals with an early stage parkinsonism who used 
vastly different strategies in terms of coping with their Parkinson's disease 
illustrate this issue. Both of these individuals were college professors in 
their late fifties.

The first person readily accepted her Parkinson's disease. She often took the 
opportunity to tell others about it and emphasized that it was not a major 
issue for her. In this example, the patient used the emotional strategy of 
coping by accepting her condition.

On the first day of the semester, she would inform her class 'I have 
Parkinson's disease. It is usually well controlled by the medications I am 
taking, but some days you may notice that I have tremor or that I may have 
difficulty writing on the blackboard. I hope you will be understanding about 
this.'

She found that once she told the students about her Parkinson's disease and did 
not appear distressed about it, her ailment was no longer an issue for her or 
for the class.
In contrast, the second patient was frightened that others would find out about 
his Parkinson's disease. He tried to alter his environment in order to hide his 
symptoms, a coping mechanism that proved less than successful.

When lecturing to his classes, he would arrange to speak from behind a lectern 
so that his tremulous hands were out of sight of the audience. He faced each 
lecture with a high level of anxiety that only interfered with his ability to 
give a lecture and exacerbated his Parkinson's disease symptoms.

Nondisclosure of symptoms increases the stress of the illness and interferes 
with successful adaptation needed for managing Parkinson's disease.

Individuals who use denial or avoidance as a primary coping strategy are most 
likely to attempt to conceal their diagnosis from others.

At early stages of Parkinson's disease, this strategy may actually work for a 
period of time, but this strategy usually fails as the illness progresses.

Social withdrawal due to embarrassment about early stage symptoms of 
Parkinson's disease has been a major issue for many patients.

Those patients who withdraw from their usual social and recreational activities 
are most likely to experience depression.

Depression is a common accompaniment of Parkinson's disease. In the early and 
middle stages of Parkinson's disease, the level of depression is a function of 
self-appraisal processes.

The best predictor of depression is a person's self-rating of her/his own 
disability.
Self-appraisal processes and the use of appropriate coping strategies can 
reduce the degree of emotional distress that a patient experiences.

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janet paterson - 51 now /41 dx /37 onset - almonte/ontario/canada
janet313@xxxxxxxxxxx