CODI: Cornucopia of Disability Information

Coping with Disability: A Challenge at All Ages

Coping with Disability:  A Challenge at All Ages

Bryan Kemp, Ph.D.
Director, Rehabilitation Research and Training Center on Aging
Co-Chief, Clinical Gerontology Service
Rancho Los Amigos Medical Center

__________________


The topic I'm going to address is coping with a disability later in life. As
a psychologist, my concern with the issues that we have been investigating at
Rancho Los Amigos Medical Center includes four principal topics. One is life
satisfaction. How satisfied with life are people who had a disability early
in life and are aging with it? How satisfied are people who developed a
disability later in life, as compared to other people who haven't been
challenged this way?


My second concern is: What are the personality characteristics of people who
have a disability? Are they any different than those who haven't had a
disability in terms of basic personality? In the research literature we find
much controversy about whether those who have a disability are somehow
different. My third concern is: What is the mental health status of people
who have had a disability in terms of how well they are coping? My fourth
area of concern is: Somewhat later in life, how do people look back and
review their lives, especially the experience of having lived with a
disability? What sense do they make out of it? What meaning do they see in
it?

We are reporting here on 240 people who were involved in our Comparative
Study of Aging and Disability. Of these, 120 were polio survivors, 60 were
stroke survivors, and 60 were nondisabled controls. I'm sure many of you
participated; I thank you, and we all do. These people came to Rancho for a
half-day evaluation. A medical evaluation was conducted by Dr.  Brummel-Smith
or a colleague, a sociological interview was conducted by Dr. Campbell, a
physical therapy evaluation was made, and I or a colleague conducted a
lengthy psychological evaluation of each participant. In addition, each
provided information on forms and questionnaires. I can't report on all our
psychological data in the time available today, so I picked out the most
important issues.

Life Satisfaction
 
To start with, we asked people to rate their life satisfaction in various
areasÄphysical health, emotional health, economic situation, etc. The
measure we used had a 4-point scale, so the maximum would be 4, which is
"very satisfied," 3 is "satisfied," 2 is "not very satisfied," and 1 is
"dissatisfied." There are three groups: people who had polio, people who had
stroke, and the control group, the people who had neither. There are some
differences in terms of life satisfaction here (see Figure 1).* You can see
that people who have a disability are only somewhat satisfied with their
health. That is, they have concerns over some of the physical symptoms they
are experiencing.  This includes some of the things that Dr. Brummel-Smith
talked about yesterday which may be negatively affecting how they feel about
their health.  There is a difference between people with disabilities and the
control group, with the former being less satisfied.

In terms of emotional health, again people without a disability are most
satisfied. People with post-polio follow, and people who had a stroke are
least satisfied. There are no differences between the groups in terms of
their satisfaction with housing, but as to leisure activities, the
nondisabled and the polio groups are more satisfied than the group with
stroke. In terms of friendships, there are also differences between groups;
people without a disability are more satisfied with friendships, followed by
the polio and then the stroke group. Regarding retirement or career, again
nondisabled persons are more satisfied, followed by the group with post-polio
and finally the group with stroke.

This same pattern holds true for satisfaction with life in general.
Nondisabled persons report significantly higher satisfaction than either of
the other groups; the post-polio group was more satisfied than those with
stroke. Within the polio group, people with post-polio symptoms or syndrome
were less satisfied with their health and their leisure activities than
people with only minor physical problems. Within the stroke group,
dissatisfaction with most aspects of life was correlated with the presence of
depression (see below).

Personality Characteristics
 
Let me turn now to personality characteristics (see Figure 2).  Is there
anything different about people who have a disability as shown by
standardized, frequently used measures of psychological functioning? These
scales would not reflect serious problems; these are scales of everyday kinds
of characteristics. For example, consider dominance: your ability to be
assertive, to take charge when necessary. Your capacity for status is your
ability to present yourself in a good way. We picked out about a dozen
subscales from a standardized personality inventory (the California
Personality Inventory) that we thought important, including sense of
well-being, self-acceptance and two measures of achievement motivation.

There were significant differences on these personality measures. Overall,
the post-polio group had higher scores than the nondisabled or stroke groups.
In fact, the post-polio group ranked highest on nine of eleven CPI scales. By
way of contrast, the group with stroke was lowest on every scale and their
profile is a low-ranging one compared to a medium-ranging one for the
post-polio group and the nondisabled group. These personality scores were
positively correlated with attitude toward disability scores and negatively
correlated with depression scores for the two groups with a disability.

Mental Health: Depression
 
Let me turn to the third topic: mental health. In psychology and psychiatry
there is no laboratory test that you can take to determine a person's mental
health. Dr. Brummel-Smith talked about being able to measure TSH to see
whether or not the person has an abnormal thyroid; Dr. Perry can look at an
EMG and see how muscles are functioning. You can't do that in psychology. It
boils down to detailed interviews with people and questionnaires such as the
Geriatric Depression Scale (GDS).

One thing we wanted to know is: What is the state of mental health among
people who have a disability, and does it vary by the kind of disability? We
found that in terms of the GDS, the three groups were significantly
different. The group with stroke had a mean score of 8.5 (out of 30); the
post-polio group, 5.2, and the nondisabled group, 4.1. More important are the
percentages of people who scored high on the GDS (above 15). This is more
likely to reflect a major problem with depression. Nearly 20% of those in the
stroke group had a high score, 5% of those in the post-polio group and 4% of
those in the nondisabled group (see Figure 3).

This is a common finding across multiple studies, that depression and stroke
are very tightly linked. They are linked biochemically, psychologically, and
socially. A stroke can interfere with the pathways in the brain that are
responsible for the distribution of the main neurotransmitter involved in
depression.

We also know that dealing with a stroke is very difficult for people with
such changes, and often there are problems with language, mobility, and
social role. On average, these people have had a disability for a much
shorter time than people with polio. My feeling is it takes a number of years
to work through all the adjustments of dealing with a disability, and we
might have caught people here who are still working out the re-negotiations.

We also looked at depression on the basis of our clinical diagnosis. We have
very strict criteria for what we call depression or depressive disorders. In
order to meet diagnostic criteria for a major depression, a person must have
a profoundly altered mood which is uncharacteristic of him or her:
unhappiness, irritability, apathy, disinterest. The second criterion is six
or eight symptoms that are either physiological (such as fatigue, sleep
disturbance, appetite disturbance, energy disturbance); or thinking
disturbances (such as difficulty in concentrating or making decisions,
hopelessness); or behavioral disturbance (like not getting dressed in the
morning, not going out with friends). If you have all those symptoms, that's
a very serious disorder.

But there are other lesser forms of depression. Sometimes people have a few
symptoms of depression; they may be reasonably unhappy and have sleep
disturbance, but they really don't meet the criteria for major depression.
These people in the middle, we say, have clinically significant symptoms.

In the polio sample, about 20-22% had clinically significant symptoms but not
enough to reach criteria for depression.  These people had several symptoms
which may have been important enough to interfere with the enjoyment of life,
but only a few people (10%) in the polio group met our clinical criteria for
major depression. In the stroke group 56% met criteria for clinically
significant symptoms. On clinical examination 19% met criteria for major
depression. Thus, depression is the major psychological problem in the stroke
group. If a person meets criteria for major depression, that will be the
overriding thing that influences their life, health, and personal
relationships from that point forward (see Figure 4).

Now what is important to me as a psychologist and a mental health
practitioner is: How well are these things being taken care of? What do
people do for themselves to address these issues? Unfortunately, we didn't
find a lot of evidence these issues are being addressed very well. That's
pretty typical of the older population in general. People don't recognize, at
times, that they could possibly be depressed; or they blame themselves for
being depressed. Sometimes they keep it to themselves and don't look for
outside help.

Perhaps worst of all, most of these people have seen a doctor in the last
year, often for more than one visit, and their doctor has not picked up on
it. For example, only 2 of 35 depressed persons were taking an antidepressant
medicine. Yet depression is the most common disorder associated with health
problems, and it is also the most treatable.  So a major finding from this
study is that significant numbers of people have an associated kind of
depressive disorder. It is not well identified, it is not well treated, but
it could be. There is no reason why people who feel unhappy or are not coping
well or are having depression can't get back to how they were feeling and how
they should be feeling. Disability in itself does not cause people to become
depressed.  Depression may be found among the able-bodied as well as among
those with disabilities.

I had a particular interest in looking within the polio sample here. We
wanted to find out if depression was somehow related to the onset of new
post-polio symptoms like pain and fatigue.  Our understanding of the data so
far is that changes in function are moderately related to depression late in
life.  The percentage of people in the polio group with coexisting depression
goes up significantly among those with the presence of PPS symptoms, or the
presence of PPS symptoms and new functional limitations. However, we can't
attribute all depression to these physical changes. Many people are
experiencing multiple changes in their lives, such as losses, changes in
family, income, things like that. That's also a cause of depression.

Coping with Disability
  
Another thing that we were interested in is alcohol use. As people age, even
if they drink the same amount, the effect of alcohol can change. Older people
take more medicines; alcohol interacts with many medicines. Aging people also
may lose some strength and endurance; alcohol will take away more from that.
Rates of alcohol abuse among the older population are as high as 10% to 13%
in people without disability. We wanted to see if it is much of a problem
also in people who have disability. In our study, the majority of those with
disabilities had no history of alcohol abuse.

We then asked the question, "How about your use of alcohol today?" (See
Figure 5.) You can see that among people who had polio, 60% report they drink
on a somewhat regular basis; in terms of stroke, a smaller percentage do so,
which we interpret as good considering the risk factors of stroke and
alcohol. The majority of those who have had stroke say no. In the
non-disabled population, about 62% of people say they drink. The majority of
these people, of course, don't drink to excess; they drink beer in the
afternoon or wine at night or something like that.

Some of these individuals who are in the "yes" category we need to follow up
on a little more. We have additional questions on the quantity that people
drink daily, and whether or not their drinking causes any difficulty. We can
assess difficulty by asking questions like, Has drinking ever interfered with
your daily life? Have you ever thought you should stop drinking? As people
get older, it's not necessary to stop drinking, but drinking wisely and in
moderation does become more important.

Another measure that we took relates to the psychologist's opinion as to
current level of coping, using a 5-point scale (see Figure 6). You can see
that people who have had a stroke are having more difficulties coping right
now with multiple things, including relationships with other people, their
own disability, etc. This is, in a way, an extension of the figure on
depression that showed more people with stroke have some kind of coping
difficulty; many will end up feeling discouraged, depressed, and a bit
overwhelmed. As we look at average coping ability, there is really no
difference between the groups. However, as we look at good coping, there are
fewer in this group who have had a stroke.

There is great need to assist people in coping with a disability. The support
groups play an excellent role. We probably need more services available from
mental health professionals in terms of helping people deal with difficult
issues like a stroke or other major disability. Most psychologists and
psychiatrists don't have much experience assisting people who have a
disability and probably overascribe the difficulties they are having to the
disability, instead of looking at everyday things that are going on like
struggling with issues about independence, struggling with relationships,
re-negotiating sexual relationships, and establishing new goals and values in
life.

Life Review
 
Finally, let me turn to the topic of people looking back over their lives. We
asked people, "What do you make out of this experience of having had a
disability?" We focused especially on people who had a disability for several
years, which therefore became mostly the group who had polio. We asked them:
"How would your life have been different if you hadn't had polio?" We had
some very interesting and heart-warming experiences reported to us. By far
the majority said, "Life wouldn't have been as good if I hadn't had this
experience."  The majority said things like, "It motivated me to get the best
out of life. It caused me to look at myself real hard."  A few people said it
rescued them from a life that would have been a disaster. Between 50% and 60%
said there were many positive experiences in having had a disability.

Then we asked another question: "How are you different as a person for having
had polio?" We had a wide range of answers, but again the majority said, "I'm
a better person for having had this experience in my life." About 10% said
that if they had a choice and could live their lives over again, with or
without this experience, they'd choose to have it.

Of course, you could always ask, "Is this how they rationalize their
disability?" I don't think so. I think many of these people who reported that
they wouldn't have traded the experience now have switched basic orientations
in life. The material life has become less important and they are much more
focused on interpersonal and spiritual aspects of their development. The same
people who said, "If I could live my life over again, I would choose it," are
also among those who said, "I am a better person for the experience." The
majority of those who found benefit in it focused on how the experience of
coping with a disability made them stronger, more sensitive, and more
empathic to other people's concerns.


__________________

Questions and Answers

Dr. Margaret Campbell: We'll start off with some questions from the floor.
How do you get the message out to the polio and stroke survivors who are not
here?

Kemp: That's a very important question on two levels. First, it could have a
bearing on results of course. We have people who are survivors who didn't
participate and people who volunteered. It's important to remember that we
may be dealing with a select group of people here in some respects.

On the other level, how do we get the word out? The real value of research
like this doesn't come about until you finally get it disseminated to
everybody. In all of our future research grants we have built in a very large
and comprehensive program of dissemination, so that we will be disseminating
through newspaper articles and through newsletters that are read by people
who have disabilities but don't necessarily attend conferences. In our latest
grant application, we have even built in $6,000 to pay for a 1-800 number
which people can call to get a monthly update. We will disseminate the fact
that there is a 1-800 number available.

Campbell: May I just add, Bryan, that we did build in money for the next four
months to disseminate the proceedings of this conference, which will include
transcriptions from the plenary sessions as well as from selected workshops.
We will distribute approximately 300 to 400 copies of the proceedings, one to
each support group that we can identify, on both the polio and the stroke
side; additional copies can be ordered at cost.

Question: Could there be some skewing of the samples because of the type of
people who volunteered; i.e., someone who is depressed may not volunteer for
the study?

Kemp: Yes. It's very possible we have some skewing going on and we don't have
a truly representative sample. That's always very hard to check out. On the
other hand, you would generally think that the people who would not come in
to participate would be more likely to be depressed or have psychological
difficulties. But the evidence doesn't necessarily bear that out.

Question: Can a stroke survivor control his motivation, or is there a part of
the brain affected/damaged that prevents this?

Kemp: If a person does not have a fairly serious depressive condition, he or
she can control motivation, if you define motivation as the choices you make
and the effort put forth toward achieving things. That doesn't change a whole
lot with disability, with age, etc. People are still motivated.  Certainly
coming here is a choice that took great effort, so people here are obviously
quite motivated. Even choosing not to go to the doctor shows some motivation,
which is a choice.  But we simply often don't understand people's
motivations.

On the other hand, if a person has a depressive disorder, it will wipe out
normal motivation. You can't talk about motivation if a person has an acute
medical problem or serious depression because the issue of motivation is
irrelevant; those other two things come first.
      
Question: The polio and stroke groups differ greatly. Stroke has a sudden
onset, and polio has an initial onset and then later the post-polio syndrome.
Methodologically, how did you deal with that?

Kemp: The results pertain only to level of functioning at the time the person
came in. You can call it current level of coping. When you make these kinds
of evaluations, you don't look at the reasons yet; you simply see how well
this person is coping. We didn't have any data for how well they had coped
before, how they coped with other things. This is just a look at how they are
coping right now with everything.

Question: Would it be fair to say that one question is differentiating
fatigue as a physiological phenomenon versus a sign of depression; how do you
tell?

Kemp: That's a very good question because fatigue means many things to many
people. Fatigue can arise from so many different sourcesÄmechanical,
neurological, medical, psychological. If someone is truly troubled by
fatigue, they should start with their physician and see if there is a
physiological reason. If a person is low on thyroid, that's going to cause
fatigue. If a person is doing too much, or has difficulties concentrating, or
is depressed, there's going to be fatigue.

What we have to do is rule out alternatives, zero in on the best possible
alternative, and then think of a strategy to try to improve it. There is no
simple answer, but it starts with a good assessment.

Question: Did you find out whether any strokees felt their lives were better
for having had the experience? Did anyone say they would choose to go back
and have a stroke?

Kemp: We asked the question of everyone who had a disability; we have not yet
analyzed results for people who have had a stroke. My impression is that
there are differences here between people who had a stroke and people who had
polio. But at this point, I want to be cautious and not overinterpret
anything. Come back to the next conference.

Question: What was the level of adjustment measure and what were those in the
normal control sample adjusting to?

Kemp: This measure was very general. Here, we avoided looking at any specific
issue or event a person was dealing with and, instead, looked at how he or
she was coping with life in general. We're not looking at the stimulus side
yet.  So we are looking at: How are you coping right now? You can look at
lots of different aspects of it, and we simply arrive at a 5-point scale
current coping level: very poor to very good. It's an assessment based on
what the person tells you is going on in their life. You look at how they
respond on life satisfaction questions, how they're spending their time, and
whether or not you see any serious difficulties the person is experiencing,
and you arrive at one of these global ratings of current level.

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Treischmann RB (1987). Aging with a disability. New York: Demos Publications.