Health professionals and students, family caregivers, friends of and affected individuals, and others interested in learning about dementia and quality care will benefit from completing the course. Led by Drs. Nancy Hodgson and Laura Gitlin, participants will acquire foundational knowledge in the care of persons with Alzheimer’s Disease and other neurocognitive disorders.
Identifying and Treating Behavioral Symptoms in Dementia
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From the course by Johns Hopkins University
Living with Dementia: Impact on Individuals, Caregivers, Communities and Societies
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Johns Hopkins University
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From the lesson
Impact on the Person
In this module, we focus on the impact of dementia for individuals. You will learn about common unmet needs of persons with dementia as well as the impact of core clinical features such as behavioral and psychological symptoms. Also, you will learn ways to support quality of life of a person with dementia.
Meet the Instructors
Nancy Hodgson, PhD, RN, FAANAdjunct Instructor
Johns Hopkins University School of Nursing
Laura N. Gitlin, PhDProfessor
Johns Hopkins University School of Nursing
Hi, my name is Laura Gitlin, and today I will be talking about identifying and
treating behavioral symptoms in dementia.
First, I will discuss why we should treat behavioral symptoms.
Then I will present a 6-step iterative approach to prevent,
identify, and address behavioral symptoms.
And then I will talk about a whole range of nonpharmacologic approaches for
addressing behaviors or strategies that are psychosocial and
environmental in nature.
So let's begin.
What are behavioral symptoms?
Behavioral symptoms represent a heterogeneous group of
non-cognitive manifestations.
We often think of dementia in terms of representing memory loss or
cognitive changes, but behavioral symptoms represent the cognitive,
behavioral, and psychological sequelae of the brain disease.
These symptoms are also referred to as neuropsychiatric symptoms, or
behavior and psychological symptoms of dementia.
Now behavioral symptoms are a hallmark of the disease.
They occur throughout disease progression.
Behavioral symptomatology can be found as early as mild cognitive impairment.
And they can change and
co-occur and endure until the severe stages of the disease.
They're nearly universal.
Almost all persons with dementia will have one or more behavioral symptoms.
And this is the case regardless of the etiology of the dementia.
The latest thinking is that behavioral symptoms occur in clusters.
So that there are a set of behaviors that cluster around
a form of agitated type behaviors.
There are a set of behaviors that cluster around aggression
type behaviors, apathy, and depression, and psychoses.
The latest thinking is that within any one of these symptom clusters,
behaviors will co-occur and may change over time.
They may last a brief period of time or endure.
Also, research suggest that these behavioral symptoms cannot
be explained alone by the underlying disease pathology, or
I should say, the underlying cognitive status of a person.
So as I said earlier, these types of behaviors can occur at the mild stage and
also at the severe stage of the disease.
Other common behavioral symptoms that families report is that the person they're
caring for rejects needed help or care, is withdrawn and not paying attention
to people around them, has poor self-care, becomes very unfriendly.
Engages in repetitive questioning and repetitive vocalization.
May try to wander or leave, which is referred to as elopement.
May follow the family member around the home, or shadowing.
May ingest inappropriate materials, or
engage in a whole range of inappropriate behaviors and disinhibition.
Now there are many consequences of behavioral
symptoms that are extremely negative.
Negative behavioral symptoms include, for the person with dementia,
a reduced quality of life, more rapid disease progression,
increased healthcare utilization and costs, and increased safety concerns.
Behavioral symptoms are also associated with poor outcomes for caregivers,
whether they be informal family members or formal providers.
Behavioral symptoms are associated with increased depression, burden and
upset in caregivers, an increased need for vigilance and
time spent in caregiving and oversight of the person with dementia.
They're also associated with a poor self-reported
quality of life of formal caregivers.
And they also increase the risk that a family member
will need to place their loved one in a hospital or a nursing home.
And also, caring for a person with dementia who has behavioral symptoms
is associated with an increased cost to society and
out-of-pocket economic cost to the family member themselves.
This is a very important slide that shows, based on the Cache County
population based study in Utah in the United States, that behaviors,
if untreated, actually accelerate the onset of severe dementia.
And this is true even if behaviors are very mild.
This is the survival curve.
If you take a look at the first blue line,
this represents people with dementia who did not have behavioral disturbances,
and you can see the rate of their decline in dementia.
But take a look at the red line at the bottom.
These are people with clinically significant behaviors, and
look at the rapidity of their decline in dementia.
So we cannot ignore behavioral symptoms.
They're very, very serious, and they have profound impact on the person
with dementia, on the family caregiver, and societally and how we organize care.
My colleagues and I have developed what we call a 6-step approach
to helping families and clinicians and health providers in any
practice setting think through ways of addressing behavioral symptoms.
These are six progressively, highly interrelated and co-occurring steps for
addressing behavioral symptoms and introducing nonpharmacologic strategies.
And I'm going to walk you through each of these steps and
help you think about what they entail.
So the first step is to understand if behaviors are occurring.
And here we must assume a preventive stance.
This would entail ongoing screening for behaviors and also risk for
behaviors, and then implementing preventive actions.
Now there are no widely agreed upon standards for
screening for behavioral symptoms.
For example, how often should behavioral symptoms be screened for
and what kind of scales should be used?
This is unclear at this point.
And different clinical settings and practices in a way are left on their
own to identify the frequency by which they should be screening for
behavioral symptoms, and the kinds of scales that should be used.
Typically, behaviors are brought to a physician's attention
by a concerned caregiver after the fact.
But our step 1 in this 6-step process is suggesting
that we should be actively screening, as I said earlier, for both risk factors and
for the occurrence of behaviors.
So that we can monitor what is happening to the person with dementia and
their families before these behaviors occur.
The American Medical Association in the United States has suggested that at
the very minimum, behavioral symptoms should be screened at least once a year.
Most of us believe it should occur more frequently.
We have identified through a very systematic review 44 psychometrically
sound assessment tools that are available to the general public and are published.
And we can choose assessments then based on who can conduct the assessment,
the amount of time available.
And the kinds of behaviors that are of most concerned to the patient,
the family member or the health provider.
So we do have tools available for assessing behaviors.
However, we do not have tools for assessing risk factors for
these behaviors.
So what are some of those risk factors that contribute
to the occurrence of behavioral symptoms?
Research suggests that the more distress a family member is,
the more poor health they have, and the poorer the quality
of the relationship between the family member and the person with dementia.
These are all factors that place a person with dementia at greater risk for
having a behavioral symptom.
Primarily of the agitation type.
Also, we can assess for pain and we can minimize or
prevent behaviors from managing people's pain.
Some studies have suggested that 40 to 50% of people with dementia
have pain that goes untreated and unrecognized.
We also know that a patient or
a person with dementia sleep disturbance is a risk factor for different kinds
of behavioral occurrences of the agitated type and aggressive type during the day.
Also, inadequate nutrition and underlying infection or acute
medical illnesses also are associated with heightened risk for behaviors.
So, what would be an approach to minimizing these risk factors?
First, identifying the particular risk and
then implementing various kinds of strategies.
And certainly, a general preventive strategy for
minimizing risk factors for behaviors concerns caregiver education.
As families are in the forefront of caring for
a person with a dementia over the course of the disease, and
this is true in whatever country and in whatever location you live in.
It's family members who are responsible for
the care of the person with dementia, providing education about the disease.
This is indeed a very complex disease.
And people need a lot of education.
And also skills in managing as the disease progresses,
is very important approach to preventing behavioral symptoms.
Also, we know that caregivers who are very distressed and have poor health, as
I mentioned earlier, enhance the risk for a person with dementia to have behaviors.
So helping a caregiver figure out the best ways of taking care
of themselves is another important preventive measure.
So, Step 2.
Let's say the person is assessed for behaviors and
they do then have various kinds of behaviors.
In our studies, we have found that families are managing
anywhere from 6 to 12 behaviors at any one time.
Then, it's important to really understand what these behaviors are.
And to describe them, so
you can really understand the context in which they occur and their specific
characteristics which could then lead to very specific ways of intervening.
So this is mostly a clinical process using structured probing questions.
It involves an interview with the person with dementia and
the caregiver to characterize the behavior and the circumstances of its occurrence.
In this Step 2 of description of the behavior,
it's very important to differentiate symptoms and
to get as much detail about the occurrence of the behavior as possible.
So for example, agitation encompasses a very wide range of behaviors.
And understanding exactly what form of behavior
is occurring in terms of the agitation would be important to delineate.
Don't forget the patient's perspective.
Don't forget the person with dementia's perspective.
They may or may not have insight into their behaviors but they may be able to
report on the quality of life and some of the things that are disturbing them.
So always include the person with dementia
in a dialogue about what's happening in their daily life.
An immediate consideration in thinking about behaviors and describing these
behaviors is to evaluate whether the behavior is imposing an immediate threat
to the safety and well being of the person with dementia and the family caregiver.
Another important consideration is to consider the level of distress for
the family care unit.
If a family is dealing with multiple behaviors,
it's best to prioritize based on whether any one of the behaviors being managed
pose a safety hazard or are particularly distressful to families.
Some families will find some behaviors inconsequential and
other behaviors very consequential to their well being.
And so, in terms of prioritizing care, we always want to focus on those
that pose the biggest source of distress to the family.
Here is an example of some of the guiding questions that you can use
to help characterize behaviors.
You want to know, what did the person do or say?
What did the caregiver say and do in return?
You want to know why the behavior's perceived as a problem.
What's going on about the behavior that's making it upsetting to the family?
You want to try to detect patterns.
Does the behavior occur certain times of the day?
Maybe it occurs certain times of the week.
How did the behavior happen in the past week?
How often did it happen in the past month?
And then, where does the behavior occur?
Does it occur when the person's outside?
When they're at other people's homes?
Did it occur in the bathroom?
You want to begin to recognize patterns.
So, here, we're looking for triggers or antecedents.
Things that happen before the behavior, the environment in which the behavior
occurs, and then also what happens after the behavior occurs.
Sometimes the caregiver's reaction to these behaviors
can inevitably exacerbate the behavior.
Now, in Step 3, we have a sense of the behaviors that are occurring.
We have a sense of the context and how to describe the behavior.
And now we have to do some detective work.
We need to begin to identify, what are some of the underlying causes?
To do this, I like to use what I call a triatic model, and
think of one behavioral symptom time.
And this behavior may be influenced by or
exacerbated by the confluence of multiple factors.
The first has to do with things that may be happening to the person
with dementia themselves.
Here, we want to consider, for example, underlying causes of the behavior.
Such as whether there's an undetected medical condition,
whether there is pain, whether the person has various
issues with executive function, such as difficulty initiating.
Such that the caregiver or
others may be assuming that the person can initiate an activity and
that in turn frustrates the person with dementia and makes them agitated.
Also consider other aspects of physical well being, is the person dehydrated?
Do they have constipation?
Are they disengaging and why?
Are they at risk of falls and so therefore they just sit.
Do they have fears?
Are they anxious?
Do they have a sense of loss of control and loss of meaning?
These are all factors that can actually be ameliorated and addressed through
non pharmacologic approaches that may be contributing to our behavioral symptom.
Such as resisting care, or not wanting to bathe, or
trying to leave the home, or phasing in the home.
Next, consider factors associated with the caregiver, whether that be a formal
provider, in an adult day center for example, or a family member.
Think about communication.
How does a family caregiver or
family members communicate with the person with dementia?
Families may inadvertently use a loud, harsh tone.
People with dementia are extremely sensitive to the emotional tone
of voices and of people's affect in their environment.
Is the caregiver so distressed, that that in turn is the source of agitation for
the person with dementia?
Does the caregiver have to get up in the morning and
rush through daily routines because they're on their way to work?
And that rushing and the lack of predictable routines is a source
of agitation or cause of other kinds of behavioral disturbances.
How is the caregiver coping with having to care for
someone with this devastating disease?
Poor coping style such as believing that the disease would just go away or
if I do this one little activity, everything will be fine again,
represent coping styles that actually associated with a risk for
a behavioral symptomology.
The third factor you want to consider is what's going on in
the physical environment that could be contributing to behavioral symptoms?
Is it very cluttered, so it's very confusing to a person with dementia?
They are unable to read the physical cues in the room because it's unclear
what each of the objects mean.
What about the noise level?
How about the complexity of many people in the environment asking all different kinds
of questions?
Is there too little or too much stimulation?
Are the activities offered way too complex for
the person, given their cognitive status?
Is it a safe environment?
Maybe that's a source of agitation for the person with dementia.
Is the environment too hot or cold?
So here you see potential underlying causes.
These are not exhaustive, but
this gives you a framework for thinking about potential underlying causes.
Now, what you should notice is that for those causes associated
with each of these factors, the individual with dementia, the caregiver, and
the physical environment, all of these factors are actually modifiable.
We can do something about them.
Obviously, we cannot change the course of the disease at this point.
We do not have disease modifying drugs, but
we can modify how the person is feeling physically and emotionally.
We can modify, as caregivers,
our interactions with the person with dementia.
And we can modify the physical environment
in which the person with dementia is living.
Okay, on to step four.
So we've characterized, we've identified the behavior,
we've characterized the behavior, we have identified one or
more modifiable underline causes.
Now, we are ready to devise a treatment plan.
Now, you can think of a treatment plan as involving multiple strategies,
and it may be for any one behavior that multiple strategies need to be included.
We suggest that you think of four broad approaches to a treatment plan.
One is a set of what we call generalized approaches to addressing the behavior.
And I'll go into a little bit more detail about this in a moment.
But basically, a generalized approach to using non pharmacologic strategies,
is not addressing any one behavior, but
it's designed to enrich the environment in general, and
to reconnect a person with dementia to their environment and to previous roles.
So in example is for using activity as a way to keep the environment,
the person engaged in a meaningful way to their environment.
Another generalized approach is to improve the caregivers education and
support and skills and their general well being.
So again, this is a generalized approach that is reflective of
good comprehensive dementia care practice that can minimize,
I should say prevent, minimize or reduce behavioral symptoms.
Another approach may be a very targeted approach and
this involves basic problem solving to identify the behavior and
very specific strategies that could eliminate that particular behavior.
So that if the person is scared of getting in and out of a shower for
example, providing a grab bar and
having them hold onto that, may be an approach that's very targeted.
Again, it's to this way of thinking about devising a treatment plan
involves how do characterizing the behavior and
the potential underlying causes and then modifying those specific factors.
It may be, that you use these two different approaches, and
that even then still, referral to a specialist is important and necessary.
And so, always consider that it may be necessary for
certain kinds of behaviors to have the opinion and
expertise of geropsychiatrists, or psychologists, or occupational therapists,
or geriatric nurse who can work with you to solve this kind of behavioral puzzle.
And of course the fourth approach is using a combination of all of these.
So let me get a little bit more specific
of what we mean by general non pharmacologic strategies.
Because these should be introduced as a way to prevent behaviors and
also as a way to manage them and they involved on going support education and
skills training of caregivers.
We have over 20 some years of research,
excellent studies showing through randomized trial design,
a wide range of caregiver support programs that are highly effective.
And we can show also in this research that these approaches to
helping families understand the disease, and providing them with very specific
skills to learn how to communicate effectively, how to use activities, and
how to understand the behaviors are not intentional or done in spite of
the person does it to spite the caregiver, are very effective ways to
not only help the caregiver but actually to reduce the behavioral symptoms.
We also know a very good way of a general non pharmacologic
approach in a very good way of managing and preventing and reducing behaviors, is
helping families set up structured daily routines that are highly predictable.
And here, using calendars and memory boards, and
setting up a structure that the person with dementia can depend on day to day,
is a way of reducing anxiety, aggression, and agitation.
Keeping the person with dementia engaged in activities is another generalized
approach.
Engaging the person with dementia in exercise.
And then using various kinds of modifications to a home environment for
example.
Removing dangerous objects and clutter or using grab bars and
other kinds of assistive devices that can help a person with dementia negotiate and
way find and effectively interact with their environment.
There's all these different kinds of strategies that do have an evidence base
and show that they do result in improving the caregiver's well being,
as well as behavioral symptomatology.
Here's some examples of what mean by a targeted strategy approach.
Let's say a family member is complaining that the person with dementia indicates
that they here voices all the time and particularly when they go to sleep.
Hearing voices is something that often triggers an immediate consideration for
the use of medications.
Yet research are showing that, that shouldn't really be our first line
of attack, the first line of treatment should be to consider
other kinds of aspects that could be modified non pharmacologically.
For example if the targeted behavior is hearing voices,
evaluating the person's hearing, adjusting amplification of hearing aids,
making sure that batteries in hearing aids are working,
are all very simple strategies that should be implemented first.
Here's another example, very common, over 60% of people with
dementia will have some sleep disturbance throughout the course of the disease.
Before jumping to sleeping pills or
other kinds of pharmacologic solutions, evaluate the sleep routines.
Does the family in fact have a sleep routine?
Does the person understand morning to nighttime?
How about caffeinated beverages?
Are they started in the late afternoon, and do they continue in the evening?
Again, creating a structured day can have a big effect on minimizing sleep
disturbances, and also introducing exercise and
other activities that are appropriately stimulating can reduce sleep disturbances.
And again, there's a whole range of nonpharmacologic,
non drug psychosocial and environmental adaptations that can be made
where a person lives in order to address these two types of very common behaviors.
Okay, so we identify that behaviors occur.
We have determined what they look like, we've described them.
We've identified some underlying causes.
We have a treatment plan.
Of course the next step is to say, did that treatment plan work?
This is important because working with people who have
behavioral symptoms will occur over time and these behaviors come and go.
And we have to make sure that any kind of strategy that we've implemented
is effective, and if not, we have to remove that activity.
If the strategy is not effective,
we have to understand why, and there could be lots of reasons why.
Number one, maybe it was never implemented because the person was ill, or
the family member was too busy.
Maybe the strategy is the right strategy, but it was not implemented correctly.
Maybe the caregiver did not understand how to implement it.
Maybe all of that is not true.
It was implemented, and it was implemented correctly, but
it still did not address the issue.
Maybe there are other changes in the person with dementia that has occurred.
Maybe they have an underlying infection that has exacerbated the behavior, and
the particular strategy that was introduced was not sufficient.
If a strategy is only partially effective,
then tweak that particular strategy and maybe add on additional ones.
If it is effective, then you want to reinforce its use and clearly explain
to the caregiver who's implementing that strategy, why this may be working.
And how to consider when to remove that strategy if the behaviors come back,
or become exacerbated in the future.
And our sixth, and final step, is On-going Monitoring.
As we said, behavioral symptoms occur across the disease process.
They come and go, and they co occur.
They can often be unpredictable.
On-going assessment of their occurrences as well as risk factors for
their occurrences remains essential in comprehensive dementia care.
This must be part of how we work with families who are managing this disease.
Also, On-going Monitoring involves identifying the strategies that
were implemented and determining whether they should be continued or not.
And obviously, families need on-going education and support as part of
the monitoring process and addressing the behavioral symptoms over time.
Here are some Take-Home Points I'd like you to consider.
First, attending to behavioral symptoms must be part of
comprehensive dementia care but today has typically not been.
Attending to behavioral symptoms requires an ongoing long term care approach.
Secondly, consider how you can use the six steps that I've gone through,
and how you may adapt these steps for your particular setting.
Whether that be in home care, or in a facility, or
an adult day center, or a senior center,
see how these six steps can be integrated as a way to systematically prevent,
minimize risks, assess, address, eliminate, and reduce behavioral symptoms.
Consider using a combination of nonpharmacologic approaches
as your first approach.
Implement strategies that reduce risk primarily by helping the family
care giver understand the disease and ways that they can take care of themselves.
Use generalized approaches that provide meaningful engagement and improve
quality of life and enrich the environment and which support to family caregiver.
Use targeted approaches to address very specific behaviors that are not
responding to risk reduction and generalized approaches.
And again you may need to have a specialist come in to help identify
other kinds of strategies that maybe helpful for the person.
Now keep trying.
A nonpharmacologic approach and managing behavioral symptoms can be complex.
But keep in mind that nonpharmacologic approaches are relatively adverse free.
The growing body of research on nonpharmacologic approaches and
on caregiver intervention research
has rarely reported any adverse effects of this approach.
Finally, dementia care requires a team approach.
There isn't one single health professional that has the single answer for
managing behavioral symptoms or providing care over the course of the disease.
It's important to think through how in your particular setting or
your particular situation you can create a health professional team to
offset the time needed for providing and monitoring nonpharmacologic approaches.
We believe that these six steps can be modified for
various settings and can help structure your way of thinking about.
Reducing the risk of behavioral symptoms, and managing them.
And here are a list of key resources that you may
find helpful as you begin your journey of developing
an approach to managing behavioral symptoms in your particular setting.
Thank you.
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