Module 11 – Schizophrenia and Dementia


Welcome to Module 11 of the ADRC
Dementia Care Training series. This is the second of two
modules that focus on supporting people with
serious mental illness who have developed dementia. This module was made possible
through support from the ADRC of Oregon and the Older Adult
Behavioral Health Initiative. As mentioned in Module 10,
serious mental illness refers to people 18 and older
and is defined as having, at any time during
the past year, a diagnosable mental, behavior,
or emotional disorder that causes serious functional
impairment that substantially interferes with or limits one
or more major life activities. In this module we focus on older
adults with schizophrenia and cognitive impairment, and
older adults who have psychotic symptoms associated
with dementia. In this series we have chosen
to focus on schizophrenia and bipolar disorders because
these are the two most common and pressing diagnoses. People aging with
these conditions often require residential care. To guide the discussion,
we will meet three people. Natalia is 66 and lives in
an assisted living community. She is increasingly
withdrawn from any activity, and displays no expression. Natalia almost never
initiates any activity. She only eats, gets dressed, or
moves from her room when staff come to get her
and cue each step. She does not like to be touched,
so taking her into a shower can be really tough. Li is 61 and lives in a
licensed behavioral health adult foster care home. He is living with schizophrenia. He has had extended periods
of remission of his symptoms throughout most
of his adult life. Lately he’s been missing his
mental health appointments. He is no longer managing
his symptoms well and has had problems at the day program
he has attended for years. Physically, he is having a
lot of trouble getting around. Jerome is 72 and lives in
a memory care community. He is physically very healthy,
though he walks with a cane. Recently, he tied his closet
doors shut because he said, “those people were
trying to get” him at night. During the night he
yells and throws things at the closet door. He is shouting at the caregivers
and has taken a particular dislike to the male caregivers. He hit one with his cane. Jerome curses everyone he sees;
yesterday he knocked a cup of coffee out of the hands of
one of the residents because “she was looking at” him. Our guides for this module will
be individuals with considerable professional and personal
expertise in supporting individuals who are aging
with a serious mental illness, including those who
also have dementia. We will return to Natalia,
Li, and Jerome in a moment. First, some information
about schizophrenia. Schizophrenia is a chronic
and severe mental disorder that affects how a person
thinks, feels, and behaves. A person with schizophrenia
may seem like they have lost touch with reality. No single symptom is
characteristic of schizophrenia; it is a syndrome
composed of multiple, varied, and diverse
signs and symptoms. According to the 5th edition
of the diagnostic statistical manual, or DSM-5, a diagnosis of
schizophrenia requires at least two of five signs and
symptoms that are present for a significant portion of
time during a 1-month period. It can be less than one
month if the episode is successfully treated. These signs and symptoms
include delusions, hallucinations,
disorganized speech, grossly disorganized
or catatonic behavior, or negative symptoms. At least one symptom
must be delusions, hallucinations, or
disorganized speech. We will discuss these
symptoms in more detail shortly. These symptoms have a
major negative impact on daily functioning, whether at work,
in interpersonal relationships, or in self-care. Signs of disturbance remain
continuously for at least 6 months, and other psychiatric
disorders are ruled out. Schizophrenia affects
about 1% of the population in the United States. Although small in number,
the impact on individuals, their families, and
communities throughout the life course is high. Based on these statistics,
more than 40,000 Oregonians and between 2,000 and 4,000
older Oregonians are living with dementia. The average age of first
onset is 21 years for men and 27 years for women. Schizophrenia is sometimes
diagnosed for the first time in mid or later life. This is exceedingly rare,
however, especially in old age. What has been called late-onset
schizophrenia may be associated with unrelated conditions,
such as Lewy Body dementia and other dementias. The causes of schizophrenia
are unknown but are thought to be shaped by a combination of genetics and
environmental factors. These may be coupled with an
imbalance in chemical reactions in the brain caused by
problems that occur during brain development before birth. The economic burden of
schizophrenia is substantial, and is estimated at nearly
$7 billion annually in the United States. People with schizophrenia
have a shorter life span than people without the disorder. High mortality rates are
associated with lack of treatment, substance abuse,
various medical conditions, and suicide. Little is known about the
progression of schizophrenia throughout the life course. The experience of older adults
with schizophrenia has only recently been a
focus of research. Harvey and Davidson highlight
the difficulties of conducting such research, especially
needed longitudinal studies. Difficulties include
recruiting participants, getting representative samples,
having appropriate control groups, and people
dropping out of the studies. The most recent data indicate
that about 1/10 of 1% or fewer older adults over 65
are living with schizophrenia. This smaller number relative
to the adult population may be due to a combination of
higher rates of mortality, remission or successful aging
experienced by a large segment of the population, or that
people with schizophrenia are not known to health and
behavioral health systems or to researchers. We do know that in spite
of higher mortality rates, people with schizophrenia
are living longer. The number of older adults in
the United States living with schizophrenia will double
between the years 2000 and 2025 to 1.1 million older adults. Currently the vast majority of
older adults with schizophrenia live in community settings. Symptoms of schizophrenia
fall into three groups: positive, negative,
and cognitive. The terms “positive” and
“negative” symptoms have very specific meaning when used in
the context of schizophrenia. Unlike the way we
usually use the term, with schizophrenia “positive”
refers to a group of behaviors that can be thought of as
“add-ons” to normal behavior. Specifically, positive
symptoms with schizophrenia refer to psychotic behaviors. These behaviors are not
usually seen in healthy people. People with positive
symptoms lose touch with some aspects of reality. Hallucinations are an
example of a positive symptom. The most common
hallucinations are voices. A person may hear one or more
voices that warn the person with schizophrenia about
something, or tell the person to do something, or the
voice may say mean things. Hallucinations
can also be visual, or involve other senses, such
as feeling or smelling things that are not there. Delusions refer to false
beliefs about something. A person with this positive
symptom may feel that someone is out to get him or her. Similarly, people experiencing
thought disorders have unusual or dysfunctional
ways of thinking. It is hard for them to organize
their thoughts into something meaningful or
coherent to others. Recall from the DSM-5
criteria, that at least one of these positive symptoms
must be present for a diagnosis of schizophrenia. Positive symptoms persist into
old age, though the severity of symptoms vary greatly
among individuals throughout the life course. In one longitudinal study
described by Cohen and his colleagues, about 25% of
older people with a diagnosis of schizophrenia had
long-term remission. They lived integrated
lives in the community. Another group had persistent
levels of disability due to the disorder. Positive symptoms
may change with aging. Cohen and his colleagues
reported that older adults were more likely to hear encouraging
voices and were more likely to obey them than they were
to obey destructive voices. These researchers
also found that, much like the general
population of older adults, older adults with schizophrenia
developed many successful coping skills to deal with
their persistent symptoms. A second group of signs and
symptoms are referred to as “negative symptoms.” These symptoms do not refer to
negative attitudes or behaviors. Instead, negative symptoms
can be thought of as abilities, emotions, or behaviors present
in healthy individuals that are missing in people
with schizophrenia. In the progression
of schizophrenia, negative symptoms
often appear first, and positive
symptoms develop later. Negative symptoms
include having a flat affect. That is, not showing
emotion through one’s facial
expression or voice. Similarly, people experiencing
negative symptoms have less feeling of pleasure
in everyday life. They also have great difficulty
beginning or sustaining activities and are often
dependent upon others for planning and helping
with everyday activities, including activities
of daily living. People with negative symptoms
may not speak unless spoken to, and then may say very little. Recent studies indicate that
rates of negative symptoms of people with schizophrenia
in later life are similar to rates of negative symptoms
in younger populations, although it has been widely
reported in the past that negative symptoms
increase in old age. As with positive symptoms,
negative symptoms fluctuate throughout the life course, and
the severity of symptoms vary from one person to another. Negative symptoms are often
difficult to distinguish from depression because
symptoms can be quite similar, especially flat affect
or lack of pleasure. However, people with
schizophrenia have higher rates of depression than
the general population. This rate does not
seem to vary by age in people with schizophrenia. Those experiencing high levels
of positive symptoms are most likely to
experience depression. One of the few prospective
longitudinal studies of people with schizophrenia that included
older adults found that 44% of people with schizophrenia
have persistent depression. They may meet criteria
for a major depression, which is syndromal depression,
or they may have a subsyndromal depression. This means they have many
symptoms of depression but not at the levels of
a major depression. About a quarter of the sample
in this study fluctuated between depression and non-depression,
and about 30% experienced no depression over
the study period. It appears that older adults
living with schizophrenia, especially those who have
experienced severe symptoms, are at higher risk
for cognitive decline. However, as with other symptoms,
there is considerable variation among individuals. Some studies indicate higher
levels of impairment, and others show no difference when compared
with the general population. Cohen described a study
that followed adults who had schizophrenia and were
between ages 40 and 100 years. Over the 3 ½ year study, the
researchers found that half had no cognitive decline,
40% had slight decline, and 10% experienced
very rapid decline. Harvey and Davidson suggest
that it is useful to think about older adults as members of
two very distinct cohorts. Those now in the oldest age
groups were more likely to spend many years in institutions
and had long-term exposure to harmful side effects from
antipsychotic medications. Those in the younger old
age groups experienced fewer long-term hospitalizations,
were more likely to have had exposure to recovery service
models of treatment, and were more likely
to be treated with atypical psychiatric
medications. Recovery service models focus
on recovery from schizophrenia by helping individuals to
develop tools and strategies for coping with symptoms
and obtaining supports. Harvey and Davidson found that
those who experienced the most rapid decline had a
history of institutionalization, severe and persistent symptoms, and low levels of
formal education. Schizophrenia is also
associated with other health and behavioral
health conditions. Even though many older adults
with a history of schizophrenia live successfully in the
community, and even though treatment has
changed for the better, people with schizophrenia still
have a shorter life expectancy than those without the disorder. According to studies reviewed
by Cohen and his colleagues, and based on multiple
measures of physical health and functioning, only about 2% of
adults with schizophrenia are found to have positive health
and well-being in old age. People with schizophrenia have
high rates of cardiovascular disease, diabetes,
metabolic syndrome, obesity, and tobacco use. Metabolic syndrome is a
cluster of conditions that occur together to increase the
risk of heart disease, stroke, and diabetes. These include
high blood pressure, high blood sugar, excess
body fat around the waist, and abnormal cholesterol
and triglyceride levels. Elevated rates of these
conditions are associated with poor lifestyle factors
and side effects from psychotropic medications. Those with persistent or
fluctuating symptoms may also have more difficulty
accessing health care due to stigma and health disparities. When people with schizophrenia
do gain access to care, they are less able to
manage their chronic conditions, including taking
medications as prescribed. For many years, schizophrenia
was viewed as a progressive disease that worsened over time. However, we now know that
if people with schizophrenia receive adequate support and
treatment early in the disease, the prognosis is
often excellent. In addition, the experience
of living with schizophrenia at any age can be seen
along a continuum. For older adults this includes
successful aging at one end and complete disability due to
schizophrenia and co-occurring health and behavioral
health conditions at the other. Because the causes of
schizophrenia are unknown, treatment of the
condition centers on reducing or eliminating symptoms. This includes use of
antipsychotic medications. Psychosocial treatment helps
individuals learn to cope with schizophrenia and pursue
life goals at any age. Coordinated specialty
care integrates medicine and psychosocial treatment
with case management, family involvement and supported education and
employment services. The good news is that with
earlier and more comprehensive treatment when
symptoms first appear, including use of newer
types of medications, people living with schizophrenia
can have long periods of remission and maintain
full and independent lives. Psychotropic medications
are critically important for managing severe
symptoms of schizophrenia, especially positive symptoms. These medications make it
possible for people with schizophrenia to function and
have good quality of life. As Ann Wheeler
describes, however, they also are associated
with serious adverse effects. The effect of long-term use
of psychotropic medications is quite large. We can see cognitive
decline associated with atypical anti-psychotics. We have seen risk for
morbidity and mortality, cardiovascular risk factors. We have risk for pneumonia,
metabolic changes: So weight gain, risk for
diabetes, some of those things. So some significant medical
co-morbidity associated with the use of anti-psychotics
over the long term. We also see a change in the
way the brain reacts to the neurotransmitter changes and
the way the receptors change in response to those
neurotransmitters. So over time, what we end up
seeing in a lot of patients is pseudo-Parkinsonism. The atypical anti-psychotic
medications are those that are newer. So starting in about the ’90s,
we started to have more atypical anti-psychotics. So the newest medications
that have been released are considered
atypical anti-psychotics. They have an effect on
serotonin and not just dopamine. So because they have a broader
spectrum of activity and a broader spectrum of how they
interact with neurotransmitters, we tend to call them “atypical.” The traditional anti-psychotic
medications only had an effect on dopamine and
dopamine receptors. Let us now return to Natalia. An examination of her medical
and psychiatric history reveals that she was diagnosed with
schizophrenia when she was 27, and has been on
psychotropic medications on and off for decades. Both severe positive and
negative symptoms resulted in multiple hospitalizations
for psychiatric care throughout her adulthood. Her symptoms were poorly
controlled in part because Natalia would often refuse
to take her medications, especially during periods
when she drank heavily and used drugs. When she was drinking,
she was often homeless. Her family often had no idea
where she was and felt burned out from trying to provide
support when they did know. Over time they lost
contact with each other. Natalia never expressed
any interest in them. Natalia became very ill because
her diabetes was not controlled. Following the most
recent hospitalization, she was discharged to an
assisted living community. She has now lived there for a
few months, and the staff observe that she is
increasingly withdrawn. She sits expressionless
for hours without speaking. She doesn’t want to be
touched, but will usually do what she is asked. Her symptoms are consistent
with multiple conditions, including depression, dementia
and negative symptoms associated with schizophrenia. Natalia may have all three. How does the staff
figure this out? How can they provide support? Understanding schizophrenia as
it relates to depression and dementia can help in
examining Natalia’s symptoms. According to Abhilias
Desai and his colleagues, people with schizophrenia
often experience depression, particularly with age. These researchers report
that 40% of older adults with schizophrenia
also have depression. The likelihood of depression
increases with severity of positive symptoms,
poor health, low income, and diminished social support. These risk factors
are consistent with Natalia’s experience. Although older people with
schizophrenia are at a lower risk of suicide than young
people with schizophrenia, they are at greater risk than
the general older population. Dementia and schizophrenia
share many signs and symptoms. As described earlier, cognitive
symptoms associated with schizophrenia and those of
dementia have commonalities. Both have a similar degree of
impairment as measured by the Mini Mental State
Examination, and both show impaired recognition memory. They also have common risk
factors including advanced age and low levels of education. The two disorders are also
different in important ways. First, people with schizophrenia
who develop Alzheimer’s disease will experience a more rapid
decline than seen in either schizophrenia or
Alzheimer’s disease alone. People with Alzheimer’s
disease will have a more global deterioration and will do
worse on delayed recall. The brain pathology
will also be different; the person with Alzheimer’s
disease will have the plaques and tangles in the brain
common to Alzheimer’s disease. Let’s hear what some of our
experts would be thinking about if they were to see
someone like Natalia. The long-term of schizophrenia
and alcohol abuse is not a very nice picture. Alcohol, a lot of
people use alcohol to combat their symptoms. They hear voices in their head,
they don’t always know what it is, and a lot of times
it’s really mean things they’re saying to them. And so they’ll
drink to get those out, but on the other hand, it causes
them to have more behavior issues and get evicted from
various living situations. So in her case, it doesn’t sound
like she’s drinking right now, but she has in the past. It could make her have a
harder medical situation. Years of drinking can cause
you to lose brain cells and have much more liver problems
and other health problems. The medications themselves also
can cause problems long term. There are risks associated,
metabolic risks, for these new anti-psychotics. And in addition, after a while,
in schizophrenia it’s known that the brain, the
ventricles kind of widen, and you have some
shrinkage of brain material. And you’re set up to really
have some negative symptoms of schizophrenia
and/or some dementia. And really, you’re at risk to
have other medical problems. As a member of a care
team working with Natalia, one of the things that I
would want to know regarding her negative symptoms would be are
there changes in environment, are there changes in her usual
care that have occurred around the time that we’re
seeing more negative symptoms, have there been changes
in her medical status, have there been changes
in her medication profile? All of those things we would
want to take into consideration. We would also want to know how
well her medications are working to control her
positive symptoms. It sounds like they’re
probably pretty well controlled, but at the risk of
making those worse, would we really want to make any
medication changes at this time? One of the things that we would
want to make sure that we assess would be depressive symptoms. So it’s going to mimic some
of the negative symptoms associated with schizophrenia. So is there a new
depression that we need to evaluate and take care of? The symptoms that are listed
as what some people might call depression are
probably schizophrenia. A lot of people with
schizophrenia have negative symptoms like
staying in their room, isolating, not
getting up, not bathing. In the facility where I work,
that happens on a daily basis with quite a few people. It’s just part of their illness,
and you just have to learn to work with it. After a thorough medical
and psychiatric examination Natalia’s care team has
concluded that her cognitive and negative symptoms are most
likely due to her history of poorly controlled
symptoms, substance abuse, and homelessness. If this is the case, how can
Natalia best be supported? I’d probably want to do a lot
of training with the staff in the assisted living facility to
learn how to work with her. You’re not going to be able
to force her to do things, but if she got on a little
bit of an antipsychotic, she might be more
willing to do things, maybe on a one-on-one
basis instead of in a group. Maybe she could develop a
good relationship with one of the caregivers or
an activity director, where she would interact
with them more regularly. Sometimes a group’s too
intimidating for people, especially people hearing voices
because there’s so much activity going on in their head. It’s harder for
them to do anything. If you have schizophrenia, a
lot of times you resist touch, and you resist
social connection. And so the usual and customary
way that you might feel comfortable taking
care of someone doesn’t, it doesn’t translate. However, if you
have that awareness, you can still take
care of somebody, especially as they age,
because the positive signs of schizophrenia,
the hearing voices, the paranoia, and maybe the
aggressive behavior really does subside a bit, or you can
manage it a lot better. Because a lot of times, they are
taking medication or receptive to getting their needs met. You put food in front
of them; they’ll eat it. And they don’t
really ask for a lot. They want to isolate; they
just want to be left alone. So a lot of times, you
can kind of work with them. I think some of the differences
are for sure is you always want to let them know who you are and
what your role is and why you’re providing the care
in very simple terms, such as, “Hi, I’m Diane.
I’m the nurse. I just want to take
your blood pressure.” Give them a couple minutes
to process that information, then go ahead and
take their blood pressure. Again, if they’re saying, “No,
not now,” that’s somebody I’m not going to go ahead
and try to force on. I might come back in a few
minutes and try it again. A lot of times, you’ll find
that it’s fine the second or third time you ask. I think also, predicting for
the patient is very helpful. This is for any patient, but
especially those with some mental illness, schizophrenia. Like, “I’m going to come back
in 20 minutes with your lunch. Just want you to know
I’m bringing lunch.” And then come back
in 20 minutes: “I’ve brought your lunch.” Just a lot of prediction,
a lot of– No surprises. Because it’s hard for
people with schizophrenia to process information. So the more routine
you can give them, the more predictability
you can give them, the more secure they’ll feel. Let us now move on to Li. His situation is
different from Natalia’s, although he also was diagnosed
with schizophrenia as a young adult and spent
time in and out of a psychiatric hospital
in his early 30s. Unlike Natalia, however, he had
a strong support system, and his symptoms were managed well
throughout his 40s and 50s. He did not misuse
alcohol or drugs. He lived with his parents and
was able to hold down a job in a supportive work setting. With reminders, he managed his
medications well and went to the community mental health
clinic for ongoing support. When his parents died, he moved
into a behavioral health adult foster care home where he lived
successfully for several years, continuing to work and
keep his clinic appointments. Recently, the foster care
provider and his therapist have grown increasingly
concerned about Li. He is forgetful, and the
voices and hallucinations have been increasing. He is missing work,
and when he is there, his supervisor reports
he is not performing well, and his behavior has
become erratic. His gait has changed,
and he has developed some bizarre movements. His therapist informed the
provider that Li is missing more appointments than
he is keeping and is not following
through on treatment. Li told the provider that
he got lost on the bus going to his appointment. What is happening with Li? Does he have dementia, or does
his change in behavior reflect the cognitive changes
often seen with schizophrenia? In addition to their concern
about Li’s cognitive status, Li’s foster care provider is
concerned about his movements. She has seen these before. His symptoms suggest that he is
developing “tardive dyskinesia,” one of several drug-induced
movement disorders. This disorder occurs with
long-term use of antipsychotic medications, particularly
the first generation drugs. Typical symptoms include
random movements, especially of the tongue, lips, or jaw
such as chewing movements, tongue darting, or lip pursing. Some people may experience
repetitive finger and toe movements, and
others may have rocking, jerking, or other
movements of the trunk or hips. In addition to long-term
use of antipsychotics, risk factors for tardive
dyskinesia include older age, being female,
substance misuse disorders, and being African
or Asian American. No cure for tardive
dyskinesia is available, although it can sometimes
be managed with drugs. It is vital to monitor people
on antipsychotics to prevent the onset of this difficult
and uncomfortable condition. This is done by using atypical
antipsychotics only as needed, using as low a dose as possible
to successfully manage symptoms of schizophrenia, and for
as short a time as possible. As is evident in Li’s case,
diagnosing dementia in a person with schizophrenia
is complicated. The assessment tools commonly
used to test for dementia have not been validated for
this population and are often inconclusive because
of the cognitive symptoms associated with schizophrenia. As we saw in Module 9 with
intellectual disabilities and in Module 10 with bipolar disorder,
the symptoms associated with schizophrenia often mask
symptoms of dementia until it is well advanced. Having good baseline information
documented by people who know Li well is critical to arriving
at an accurate diagnosis. The purpose of any diagnosis is
to determine what is happening to Li and what he needs now. As with any mental illness, and
whenever dementia is suspected, it is important to
focus on the symptoms and look for underlying causes. By prioritizing
symptoms and function, Li’s support team can focus most
on how to maintain and improve Li’s quality of life, as
suggested by Glenise McKenzie. In practice, when I have
someone in front of me who has schizophrenia and
has cognitive issues, and then the idea about does
it matter if the symptoms are related to schizophrenia,
with now just worsening of the cognitive effects
of schizophrenia? Or is this person an older
adult with schizophrenia, and now we’re also getting the
brain damage associated with an Alzheimer’s disease or
an actual dementing illness? I think that there’s potentially
a good purpose for that is that you can, if you think
about giving antipsychotics, giving medications to
people with schizophrenia, I’m also blunting
a lot of their– can be blunting
their–cognition. So if it’s a case of, again,
as we get older we’re not processing those
meds the same. And it might be that if I can
back off on the medication, that level of apathy–if it’s
related to the negative symptoms of schizophrenia–we’re not that
great about treating them on any age, but maybe I
could get those better if I backed off on
the medications. So I think it’s being able
to change the medications. Again, we’re trying to
look at does it matter? What only matters if I can make
their quality of life better. It only matters if it
changes their ability to function in a day. So I think it is really
valuable to take that time and thoughtfully look at
this person and look at their history and
put it together. Because you want them as
interactive as possible, to enjoy the day. And then, if it is a dementia, I
think there’s also remembering that if you really
have a dementing illness, some of those interventions
that we do for folks with schizophrenia, like reward
systems or behavioral training kind of things that
we sometimes can use, the interventions, and they can
keep people motivated. Well, it’s not going to work if
someone’s now got a dementia. So you might have to
change how you’re doing it. So I think it is
valuable, and again, taken in context of what’s
helping them have a better day. Dementia can significantly
affect medication management by those who are unable to remember
to take their medications. So it’s important to set up as
streamlined a medication regimen as possible so they’re not
having to take multiple doses of multiple drugs each day. So if there’s any
streamlining that we can do in the daily dosing as well as the number of medications,
that’s great. And then, using tools such
as medication reminders, medication pill
boxes, things like that, that might make it easier for
him to take his medication on a routine basis. Li might be a
candidate for reducing dose. So over time, the way the body
interacts with medications and the way medications interact
with the body–so both the pharmaco-dynamics and
the pharmaco-kinetics– change as patients age. So the way their liver
processes medications, the way their kidneys function,
all of those things contribute to how much medication
a person might need. So we would want to evaluate if
it’s time for a dose reduction. And dose reduction is something
that we should always consider before we add
additional medications. It’s a little bit difficult
to tell which is which: Is it schizophrenia,
is it dementia? But when they’re hearing
voices, it’s more of a schizophrenia-type thing. We had that one woman who had
schizophrenia and dementia, and after a while, it was hard
to tell which we were seeing. And as the dementia progresses,
the psych meds aren’t going to do a whole lot of good
anymore because you’re seeing it’s very similar to dementia. She heard voices, and she
would scream, but as long as you redirected her
behaviors, it was fine. And we found out things
that she liked to do. So there are ways to do it,
but it is a little tricky when they have both. There’d have to be a lot of
collaboration between the psychiatrist and
the medical provider in working with someone like that. After careful assessment, Li’s
support team concluded that he likely has dementia and that
he may have tardive dyskinesia. Changes need to be made
to adequately support Li. This includes evaluating his
psychiatric medications to see if they need to be
reduced and/or changed. Given that Li is still
experiencing positive symptoms when he misses
taking his medications, it is very likely that he
will need to maintain some level of antipsychotics. The environment will also
need to become more supportive, taking into account age-related
changes such as vision or hearing loss,
changes in mobility, and abilities for self-care. At first, Li’s behavioral health
adult foster care provider assumed Li would have
to move immediately. However, Li’s case manager was
not able to find a placement in an adult foster care home
or assisted living community because the staff in those
settings were reluctant to care for someone with schizophrenia. After discussion with the
case manager and Li’s brother, the foster care provider
agreed to help Li age in place for as long as possible. The people who work in the
behavioral health adult foster care home participated in
training in dementia care, and have viewed the Tier
1 modules of this series. The case manager assured
the provider and her staff that it was appropriate and in
keeping with their licensure to provide support for
activities of daily living– that is, helping Li with
things like mobility, bathing, dressing,
and toileting. They learned to increase
cueing to maintain continence and help Li in the shower. With training, they were able
to help Li participate in his preferred activities and
redirect him when he seemed confused or frightened. Because the staff had
known him for a long time, they could figure out what
situations to avoid to reduce behaviors
associated with dementia. Over time, staff gained
confidence in their ability to help Li maintain his
abilities in a familiar setting. At this time, Li can
still engage in his care and participate in activities
that are meaningful to him. Li’s health is stable at this
time, and the staff can manage his ADL needs. As his physical care needs
increase, however, he may need more care than the foster
care staff can provide. Li’s case manager has
been working with the Older Adult Behavioral
Health Specialist who has been providing training to
nursing home and memory care staff to increase their
understanding and reduce their fears about caring
for someone like Li. Now let’s turn to Jerome. Recall that he had many
behaviors that were frightening for staff and residents. He was increasingly belligerent
and talked about people out to get him, he hit a
caregiver with his cane, and knocked a cup of coffee
out of the hand of a resident for no apparent reason. The memory care community wanted
him committed to a psychiatric unit because he was a
danger to himself and others. The nursing staff thought he
might have schizophrenia and because they were afraid
they couldn’t handle it, they hoped he
would be discharged. We can understand
the staff’s concerns. Many of his symptoms can
be described as psychotic, particularly the delusions
and possible hallucinations. If Jerome were to show
up in an emergency room, an untrained physician
might conclude he had late-onset schizophrenia. When they consulted with the
Older Adult Behavioral Health Specialist, he reminded
the staff that Jerome had a diagnosis of dementia
and no known history of serious mental illness. He also reminded them that
many people with dementia develop psychotic behaviors. So what is going
on with Jerome? How can he and the
staff be supported? Well, I’ve been asked to talk
or discuss a case about Jerome, who seems to be having
some difficulties in his memory care unit. Not uncommon that these
behaviors he’s having, which include
violence against staff, is not, it’s more,
it is unusual. Most times,
people with dementia, they’re not violent. And so that needs to be
understood from the get go. But he’s having some
problems, which are, this, I think they’re
mainly due to fear. And his world is becoming very,
very not understandable to him. People are doing weird stuff,
they’re asking him to do weird things, they’re
in his face a lot, and he doesn’t know why. And you know, so often, these
behaviors–most often–I think, are provoked from fear and
an element of self defense. Did he have these
experiences in the past that provoked this?
Maybe, maybe not. So for Jerome, as a
member of his care team, some of the things that I
would want to know would be underlying medical conditions. So is he having issues
that might be causing pain, have there been
changes in his environment, is there an
underlying infection, is he having
problems with sleep, and is that leading to some
of his psychiatric symptoms? And then, we would
want to also evaluate his mental health
and well-being. So are there signs and
symptoms of depression that we might need to treat? And then beyond that, we would
explore the neuropsychiatric symptoms associated
with dementia. In Jerome’s case, I would of
course do a medical evaluation first to make sure there’s
nothing medically going on. But I would want more
information about him instead of just wanting to kick him out. And in his case, I would
rearrange his room so the closet wasn’t in a direct
eyesight to him. I don’t know that that
would work, but it might. And teach the staff to make
more calmer approaches to him, because it sounded like he had a
little bit of a paranoia about people sneaking up on him when
he didn’t know they were there. And that would be
when he would react. I would also talk to the Aging
Services case manager who placed him there and request a
behavioral consultation with the program they’re
now able to use, because that could be very effective. He sounds like a man that might
work better with manipulating his environment than
just moving him around. The behavior consultants we’ve
worked with have been very good about getting information and
coming up with a plan to help this type of
particular behavior. It’s been pretty effective. As suggested by our experts,
understanding the source of Jerome’s distress and
the cause of his symptoms is vitally important. This begins by ruling out
physical causes including assessing for pain,
constipation, adverse drug effects, sleep disturbance,
and delirium. Sensory deficits, including
loss of sight or hearing, can affect how people
perceive their environments. In addition, understanding who
Jerome was before his dementia and what he has done in his
life will likely provide clues for his current behaviors. This can help us understand
what might be contributing to his fears or his
aggressive behaviors toward male caregivers. Examining the environment and
how it might be contributing to Jerome’s distress will provide
another piece to the puzzle. The medical director and the
consultants assured the staff that Jerome was not
suffering from schizophrenia. The staff wondered if
antipsychotic medications could be used to control
Jerome’s behavior. The evidence tells us that
antipsychotic medications are dangerous and inappropriate
to use for most older adults, especially for
people with dementia. Adverse effects
include death, stroke, heart attack and
cardiac arrhythmias, falls, diabetes, and
drug-induced movement disorders such as Parkinsonism
and tardive dyskinesia. Most importantly, psychotropic
medications are not appropriate for most people with dementia
because they do not address the underlying causes. They should be considered
a chemical restraint that can reduce individual well-being and quality of life when
used inappropriately. At the same time, Jerome is in a
lot of distress and is in danger of losing his housing because
other residents and those who support him are
at risk for injury. Are there ever times when it is
appropriate to use antipsychotic medications for
this kind of distress? Anti-psychotic medications can
continue to be an option for the treatment of patients who
are in significant distress. What the American
Geriatric Society would say, and what I would support, would
be that this is a last resort. This is a medication– These are
medications that we would use if all other non-pharmacologic
interventions have failed. If we are sure that the
neuropsychiatric symptoms are associated with dementia and
not due to some other cause, then we would consider the use
of an atypical anti-psychotic in those patients. If we were going to start an
atypical anti-psychotic in a person with dementia who is
experiencing neuropsychiatric symptoms, we would make sure
that we would pick an agent that was not going to have
drug interactions, that would not have significant
impact on their medical and psychiatric well-being. We would start at as
low a dose as possible and titrate it up very slowly. And we would want to make sure
that we had measurable outcomes so that we would
routinely assess how well that
medication is doing. And if it’s not doing what
we intended for it to do, we would discontinue that
medication so that we would not be subjecting the patient to
other adverse effects: increase in morbidity
and mortality risk. So what we would want to
make sure is that we continue to evaluate and monitor how
well that medication is doing. And sometimes, we’re
going to see partial success, and that’s going to be OK. But if we’re not seeing any
improvement in outcome at all, we are going to want to get
rid of those medications. So if we’re going to use a
psychotropic medication in a patient with dementia
experiencing neuropsychiatric symptoms, we’re going to want to
make sure that we also continue to explore non-pharmacologic
alternatives to use in conjunction with a pharmacologic
therapy because that’s going to be what’s most successful. The companion guide for this
module provides more detailed information about specific
antipsychotic medications and their appropriate use with
people with dementia who exhibit paranoia and
delusions, hallucinations, and aggression. Jerome was treated with
antipsychotic medication, but the staff also conducted
a behavioral assessment to understand the triggers
for Jerome’s behavior. The behavioral assessment
involved all staff who supported Jerome. They kept detailed records
of when aggressive behaviors occurred, described the
behaviors in specific terms, identified what was
going on at the time, where it happened and who
was present and what they did. They also recorded how
Jerome responded to the staff. After collecting
information over several days, his support team, including
the direct care workers, met to try to figure out why
the behaviors were happening and what the triggers were. They combined this information
with Jerome’s social and personal history they
learned from his family. In the process, they discovered
that Jerome had been a victim of violence. He had been beaten badly after
being assaulted by a group of young men who had
approached him from behind. The staff realized that Jerome
did not respond negatively to all male caregivers, just
those who were the tallest. One of the caregivers observed
that he startled easily and realized that Jerome’s
hearing was very poor. He would strike out when
someone touched him, and he hadn’t heard
them approach. They also learned that the
beating had broken Jerome’s shoulder, which continued
to bother him into old age. They learned that a
crowded activity room and dining room caused anxiety. Using this information, the
staff made an effort to always approach Jerome
calmly from the front and to clearly announce
their presence. They made sure he had his pain
medications before they assisted him with dressing or taking
a shower, and they took care not to extend his arm
in a painful way. They also changed his room so
that the closet was not in the line of sight and decorated the
door so that it did not look so much like a door. They learned his favorite
music and played and sang along. They reduced his exposure
to large groups of people. Over time, several of the staff
developed great affection for Jerome, and the antipsychotic
medications were discontinued. More information about the use
of a monitoring log is presented in the companion
guide for this module. In summary, supporting people
with schizophrenia and dementia or people with dementia
with psychotic behaviors takes attention and detective work to
understand symptoms and discover the best ways to support
the person and contribute to quality of life. Team work is critical. When changes in
behaviors are observed, it is vital to examine
the person’s medical, social, and psychiatric history
to gain insight into the person. A thorough medical exam is
needed to identify underlying conditions that can be treated
to improve quality of life. Vision and hearing
should be assessed, and if there are deficits,
accommodations need to be made. Similarly, attention needs to
be given to the environment to explore how the person’s
surroundings are contributing to behaviors and how it can be
adapted to be more supportive. Finally, thorough neurological
or psychiatric exams may be needed to determine the
source of cognitive dysfunction. Medications need to be reviewed
frequently by a physician or pharmacist to determine
whether changes need to be made. The review should include an
assessment of anticholinergic burden and inappropriate
use of benzodiazepines, as described in Module 10. When supporting people who are
on antipsychotics or atypical antipsychotics, ask whether the
medication can be eliminated or reduced or whether different
medications are more appropriate for the condition of
the person right now. As always, support the person
and his or her preference to maximize quality of life
balanced with safety and care needs. More people living
with schizophrenia are entering old age. They are likely to have
more medical comorbidities and greater cognitive
impairment than their age peers without a mental illness. Aging services providers should
not be afraid of the diagnosis. Stigma against mental
health conditions has negative consequences for older adults
with behavioral health needs and can result in poor
quality of life in old age. The vast majority of older
adults with schizophrenia do not pose a risk to staff or
residents and can be valued members of a community. Aging services providers do
need to be knowledgeable about symptoms of schizophrenia and
understand how the disorder is treated and managed
across the life course. They also need to know that
people with schizophrenia can live successfully, and
symptoms can be managed. At the same time, providers must
have a basic understanding of how age-related change
and co-occurring conditions affect care and treatment. Help is available through
Older Adult Behavioral Health Specialists located
throughout Oregon. Contact information is in the
companion guide for this module. As the population
they serve ages, behavioral health providers also
need to be knowledgeable about age-related changes, including
the impact on medication management, and the need
for increased supports, including ADL support. Behavioral health
providers need to be knowledgeable about dementia. As dementia progresses, focus
needs to shift from a recovery model to dementia support. Mental health providers,
especially those in residential care, often can provide
ADL support to help people age in place. Contact aging services! Help and resources can be
found through the ADRC. Meeting the needs of older
adults with serious mental illness requires aging services
and behavioral health providers to partner with each other,
and with health providers, to understand the source of
symptoms and work together to obtain needed resources and
supports to enhance function and quality of life. When symptoms appear
or change significantly, always advocate for a thorough
medical evaluation to rule out medical or environmental
causes of the symptoms. Finally, it is important to
move from a system focused on eligibility to one that gives
priority to maximizing function regardless of the
source of symptoms. So why I think we need to focus
on symptoms and function for an individual, and I honestly think
this is true for any chronic illness, is that the purpose
of intervening is to improve that person’s quality of life. The quality of life is
directly linked to function and level of function. When I think about function,
there’s the simple one is physical function. I’m thinking do
they need a walker? So there’s physical function. But there’s also the
cognitive function, and there’s emotional function. So when I say function, that’s
in the broader term of function, and I want to say that. So I think it’s that whole
idea of figuring out where the symptom comes from, what’s
making a behavior happen: is it the environment, is it
the person, is it a change in something that’s going
on, is the person sick? All those kinds of
questions that you ask. But without
addressing the symptom, I can’t improve the function. For me, it’s the function, on
whatever level of function I’m going for, that makes the
difference in that person’s ability to take
care of themself, potentially, live as
autonomously and engaged and happy as possible. So that would be why
I think it’s important. This concludes Module 11. Please copy this
link and complete the short feedback form. This link will also take
you to a knowledge quiz that covers both
Modules 10 and 11. Once you complete the
quiz, you will receive a certificate of completion. Thank you again for your
attention and your support for people with dementia
and their families!

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