1. University of Kansas Medical Center
Understanding and Responding to Behavioral Symptoms of Dementia: A Guide for Direct Care Workers
Developed by
Linda J. Redford, R.N., Ph.D
University of Kansas Medical Center
In collaboration with Aging Services of California, Sacramento, CA and LeadingAge Center for Applied Research, Washington, D.C.
Funded by a grant from
the SCAN Foundation
In you plan to use the Pre- and Post-Knowledge Assessments, please administer the Pre-Knowledge Assessment prior to presenting this Module and have participants hand them in.

2. Module 1 What is Dementia?
People normally have some changes in their mental abilities as they age. These changes do not significantly affect their daily lives, but if memory loss gets progressively worse and begins to affect daily function, it is likely to be a dementia.
Dementia is a loss of mental skills that affects daily life. It can cause problems with memory and affects how well people can think and plan. Dementia gets worse over time. How long this takes before the person has severe disability varies by the cause of the dementia and is different for each person. Some people slowly get worse over many years. Others lose skills quickly.

3. Objectives By the end of this Module, participants will be able to:
Define “dementia”.
Discuss two changes in memory that occur as a normal part of aging.
List at least two symptoms of early dementia.

4. Objectives
List two irreversible causes of dementia and two reversible causes.
Describe behavioral symptoms that are typically seen as dementia progresses (the five ”A”s of dementia).
Identify and discuss the characteristics of two types of dementia.

5. What changes in mental abilities are normal with aging?
Let’s start with some normal changes that occur in the brain with aging. Remember, there is a difference between normal aging changes and those that occur with dementia.

6. Normal Changes Caused by Aging
Language
Slower getting words from brain (late in life).
Intelligence-
Little slower solving problems
Memory- decline in processing
of information starts at about
age 40.
70 year olds take up to 4 times longer in basic memory tests than 20 year olds.
Language- The ability to retrieve words from memory- semantic knowledge- appears to decline, but this isn’t usually obvious until late in life (70+ years). For example, an individual may see or be thinking about an object, but not be able to remember the name of the object as rapidly as a younger person can.
Intelligence - Problem-solving ability declines- esp. after age 70.
A 70 year old person will probably not do as well as a 20 year old with the same education and intelligence level on a timed problem-solving test
Previously learned knowledge, such as how to do arithmetic problems and knowing previously learned words and their meaning, remains relatively stable.
Memory- Several processes are involved in memory
Taking information in (encoding)
Retaining information (storage)
Recalling information (retrieval)
There is some decline in processing of information among adults age 40 and over.
Read More
Cleveland Clinic (2007). When Memory is Normal and Not-So-Normal.
American Psychological Assoc. Memory and Aging.

7. Changes in the Brain in Normal Aging
Reaction Time
Slows as we age.
Reaction time also slows with age. This means that it will take an older persons longer to recognize and respond to information from their eyes, ears, touch, and so forth. This can be critical in preventing a fall, stopping if a child runs in front of your car, or preventing serious burns if you put your hand on a hot surface.
Read More
Stevens, L. (2006). Slower Reaction Times Linked to Higher Death Risk for Old People and Young.
The Merck Manuals (2007). Effects of Aging: Biology of the Nervous System.

8. What is dementia?
Dementia is a collection of symptoms resulting from disease or injury to the brain.
The changes we talked about in the previous slides are considered “normal” aging changes. Now we are going to talk about the changes that occur with Dementia. These changes are quite different from those of normal aging.
Dementia is not a specific disease– it is a group of symptoms that indicate there is damage in parts of the brain that control memory, reasoning, judgment, and eventually bodily functions. There are many conditions that can cause dementia and we will discuss some of the more common causes in this session.

9. It is progressive– this means it typically gets over time.
What is DEMENTIA?
It is progressive– this means it typically gets over time.
worse
There are a few causes of dementia that may be treatable, such as dementia caused by medications, brain tumors, or disruptions of hormones in the body. However, the types of dementia discussed in this presentation are not curable and current treatments tend to only slow the progress or improve some of the symptoms for a limited period of time.

10. What happens in the brain?
There are billions of cells called neurons in the human brain.
A neuron
Neurons are nerve cells that comprise much of our brain and are spread through our body. It is through these cells that we think, feel, interact with others, and interact with the world around us.
In the Resources Section of the Instructor’s and Participant’s Manuals, information is provided about a link to a YouTube video, “Neurons and How They Work?”, that illustrates with animation how neurons pass information.

11. What happens in the brain?
Neurons are able to pass information from every part of the body to neurons in the spinal cord and brain. Information is also passed among the billions of neurons in the brain. This allows us to think, feel, and act.
Information, whether it is generated in our brain or reaches us in the form of signals from our skin, ears and eyes, must pass between millions of neurons before we can interpret and act on the information. Although the neurons are not physically linked, they are able to pass impulses between themselves.

12. What happens in the brain?
In conditions that cause dementia, the neurons and channels for passing information between the neurons are damaged. The person can no longer think and act as they did before.

13. Percent of People with Dementia by Age
Dementia is primarily a disease of older people and the likelihood of developing dementia increases as people get into their 70’s, 80’s and beyond. There are some forms of dementia that can affect younger people, but these are rare and are usually associated with certain diseases, excessive alcohol or illicit drug use, or genetic causes.
Read More
Jeffery, S. (2009). Dementia Incidence and Prevalence Continues to Rise Even in the Oldest Old, Medscape Nurses,
(To access Medscape Nurses, you will need to create an account and sign in. It does not cost anything to create an account or to use Medscape Nurses. It does give you timely access to new information in nursing and health care.)

14. The five “A”s of Dementia
Amnesia
Aphasia
Apraxia
Agnosia
Agitation
These are what we call the five “A”s of dementia. Each of these words refers to an aspect of human function that is disrupted by dementia. Remembering these words is only important to helping you remember the aspects of behavioral function that are affected by dementia.

15. Memory Changes (Amnesia)
Recent Memory
Recent memory is most difficult for people with dementia.
Cannot store information
Cannot retrieve stored information
Information received and retained for minutes, hours, or days.
Amnesia refers to the inability to remember. It is in the area of recent memory that amnesia is first seen in dementia. Recent memory allows us to store information for a short period – a few minutes, hours, days (e.g. when a daily medication should be taken, a lunch appointment, or where you parked your car at the mall). To be able to use information we must be able to get the information into our brain and store it, even if only for a few minutes or hours. Individuals with dementia are often unable to store information for even a few minutes.
Ask participants-
What kinds of behaviors make you suspect that a person you know or care for may have recent memory problems?
How do you feel when someone you are caring for asks you the same question over and over?
How do you usually respond to this behavior?

16. Memory Changes (Amnesia)
Long-Term Memory
Store information from months or years ago.
These are often the only memories individuals with dementia can remember.
Long-term memory is the last to go because these memories are well-stored in the brain. A person with dementia may be able to describe aspects of their early life, such as their wedding day, but not remember what they did an hour ago. For the person with the dementia, the past is their present. However, long-term memories are not always reliable so what is remembered may not always be exactly what happened. As dementia progresses, even memories from long ago are lost.

17. Language Difficulties (Aphasia)
Cannot understand speech
Will not be able to respond appropriately because they do not understand what you are saying.
Cannot produce speech
Difficulty finding words
Jumble words
Individuals with dementia often have language difficulties. Aphasia is the inability of a person to understand speech and/or to produce understandable speech. It is seen in people who have had strokes that affect the language section of the brain and is seen in dementia when the language center of the brain becomes affected. Individuals with aphasia may have no idea what is being said to them. It is as if you are speaking a foreign language. In other instances, individuals may understand what is said, but cannot express themselves in words. They cannot remember the right word or jumble their words and may be difficult or impossible to understand.

18. Functional Abilities (Apraxia)
Can no longer perform tasks they have done throughout their lives.
Cooking
Operating appliances
Dressing
Bathing
Eating
The ability to perform tasks that have long been pre-programmed is eventually erased in dementia and sometimes with strokes and other forms of brain damage. Performing what were once daily tasks become too complicated for the person with dementia.

19. Problems with Recognition (Agnosia)
Inability to correctly recognize images.
People
Animals
Objects
Also lose ability to
identify scents (smells)
and touch.
The brain stores images and when we see something we compare the image to images in our brain to know who or what we are seeing. Dementia can erase these images and people with dementia may no longer be able to recognize common objects. For example, they may not recognize the shape of a toilet and think the flower pot is a toilet. They may not recognize or misidentify family members and friends.

20. Extreme Emotional Disturbance (Agitation)
Agitation is common in
dementia & more likely if-
Have discomfort
Thirsty
Need to urinate
Too hot or cold
Environment too
stimulating
Noisy
Too many people
When individuals with dementia have discomfort or cannot understand or tolerate things going on in the environment, they may become anxious and display signs of agitation. A feeling of being uncomfortable and anxious is a fairly common response for all of us when we are confused, fearful and/or feel as though we have little control over what is happening to us. For the person with dementia, this is often shown in physical behaviors such as being jittery, very nervous, aimlessly pacing, or other behaviors indicating emotional discomfort.

21. Dementia has several causes--
Vascular
Dementia
10%
Frontotemporal
Dementia: 5%
Other
Dementia
With Lewy
Bodies: 15%
Alzheimer’s
Disease %
There are several conditions/diseases that can cause dementia. This chart shows the more common forms of dementia. Alzheimer’s Disease is the most common. Although there are some differences in the early symptoms and course of the different types of dementia, the end result in terms of decline in function, memory,
and behavior are similar.
Read More
Dementia Overview- Causes (2005). eMedicinehealth.

22. Alzheimer’s Disease- the most common cause of dementia
Alzheimer’s Disease is the most common form of dementia, but it is often difficult to say a person has Alzheimer’s Disease versus some other form of dementia while they are alive. It cannot be definitely diagnosed until a person dies and their brain tissue is examined for the changes that occur in Alzheimer’s Disease. It is usually suspected that a person has Alzheimer’s Disease if tests do not show evidence of other causes of dementia that are identifiable before death.

23. What happens in Alzheimer’s Disease?
NORMAL BRAIN
PLAQUES & TANGLES
We do not know exactly what causes Alzheimer’s Disease, but we do know that changes occur in the brain that affect a person’s ability to effectively use and pass information. The neurons in the brain are damaged. Plaques begin to form in the brain and we begin to see what are called tangles within the neurons. Tau is a protein in the neurons and in Alzheimer’s Disease this protein begins to stick together creating tangles. We do not know for sure whether plaques and tangles cause destruction of the brain and result in dementia or whether they are a result of the disease.
The picture on the left illustrates how normal neurons appear. On the right, you see what happens in Alzheimer’s Disease. Little tangles of protein form in the neuron and plaques appear in the surrounding brain tissue. These tangles and plaques interfere with information being passed between the neurons.

24. The Brain in Alzheimer’s Disease
The destruction of neurons and the pathways in the brain lead to actual destruction of brain tissue and shrinkage of the brain. This picture shows the difference between a normal brain and the brain of a person with Alzheimer’s Disease.
Read More
Alzheimer’s Association (Alz.org).
Fact Sheets: Alzheimer’s Disease

25. Early Signs of Alzheimer’s Disease
Increasing forgetfulness about recent activities or events
Forget to take medications
Forget what was eaten for breakfast
Forget where things were placed
Forget information you were just given
Alzheimer’s Disease is the most common form of dementia. If you ask a person with Alzheimer’s Disease what they ate for breakfast this morning, they may tell you what they used to eat for breakfast 30 years ago. Therefore, it is important to be able to verify responses if you believe someone is having memory problems.
Likewise, those with early Alzheimer’s may not remember what they have just been told. They may repeat a question they just asked or forget an appointment they were given a few minutes previously.

26. Early Signs of Alzheimer’s Disease
Changes in how people act and behave.
Can’t follow a conversation
Respond inappropriately or in a way that is very different from their past behavior patterns
Decreased ability to perform tasks requiring reasoning and higher level mental skills.
Forget how to count correct change
Forget how to drive to familiar places
In early dementia, people’s behavior may change in subtle ways. They may appear to be fine in brief social conversations, but they may have difficulty following lengthy conversations and may repeat questions or topics that were just discussed. In the early stage of dementia, people are often very good at “covering” their difficulties and making excuses about things they have forgotten. For example, they may be unable to tell you what day it is and will say that knowing what day it is just isn’t important to them anymore.
A common early sign of dementia is a person becoming lost in familiar places. For example, forgetting how to get to a grocery store that they have shopped at for 20 years or being unable to follow a map on a trip (if this was a skill they had previously).
Read More
Alzheimer’s Association, (2010). 10 Signs of Alzheimer’s
Helpguide.org. (2009). Understanding Dementia: Signs, Symptoms, Types, Causes, and Treatment.
Stages of Language Breakdown (Alzheimer’s Disease).

27. Later Stages of Alzheimer’s Disease
Have increasingly greater difficulty with memory.
Eventually will not know their loved ones or themselves
Will not remember simple directions
Become unable to perform daily tasks.
Bathing
Dressing
Eating
As dementia progresses, memory problems become more severe. Short-term memory is essentially gone and long-term memory is increasingly impaired. Eventually, persons with dementia will no longer recognize people they have known all their lives and will not even know themselves.
Both the mental and physical ability to perform basic daily tasks is impaired.
Read More
Alzheimer’s Association (2010). The Later Stages of Dementia.

28. Later Stages of Alzheimer’s Disease
Become unable to communicate through language.
Display more behavior changes.
Agitation
Wandering
Continuously repeat verbal and/or physical behaviors
Eventually be unable to walk or care for self in any way.
Meaningful communication through language is lost and the resident will only be able to show needs and feelings through nonverbal means or vocalizations.

30. Dementia with Lewy Bodies
Have brain changes and symptoms
similar to Parkinson’s Disease--
Changes in alertness & attention
Stooped posture
Shuffling walk and risk of falls
Tremors
May have visual hallucinations (see things that are not there or misinterpret objects).
We have been talking about Alzheimer’s disease which is the most common cause of dementia. There are other forms of dementia. Although the ultimate outcomes are similar, the early course of the diseases may have some differences.
Dementia with Lewy Bodies produces behaviors we often see in Parkinson’s Disease, such as a bent over posture, a shuffling gait, slow movement and difficulty writing and manipulating small objects. People with Lewy Bodies may not have noticeable memory problems in the early stages of dementia as do people with Alzheimer’s and are more likely to have visual hallucinations earlier than in Alzheimer’s. People with Lewy Body disease do, however, display some typical behaviors associated with Alzheimer's disease — such as confusion and problems with judgment, problem-solving and decision-making. Later in the disease process, it is difficult to distinguish this disease from Alzheimer’s Disease.
Read More
Lewy Body Dementia Association, Inc.
Lewy Body Dementia (2010). MayoClinic.com.
NIH: National Institute of Neurological Disorders and Stroke

31. Vascular Dementia Stroke is the most common cause of damage.
Acquired mental changes from damage due to disease of the vessels in the brain.
Stroke is the most common cause of damage.
Damage may happen in a step by step progression over time.
Changes caused by many small strokes over time.
Vascular dementia refers to a subtle, progressive decline in memory and cognitive functioning resulting from numerous small strokes over time. A stroke typically occurs when a blood vessel in the brain is blocked with a blood clot, but may also be caused when blood vessel bursts and releases blood into the surrounding brain tissue. A blockage of a blood vessel keeps oxygen from getting to cells in the brain and they die. When a blood vessel bursts, the blood itself damages cells in the brain in addition to areas beyond the rupture being damaged by lack of blood flow. Each time a stroke occurs, even a small stroke, a portion of the brain is damaged and the affects of that damage accumulate over time.
Chronic conditions such as high blood pressure, diabetes, high cholesterol, and heart disease increase the chances of a person developing vascular dementia. Since African-Americans and Hispanics tend to have higher rates of these risk factors, they are at higher risk of vascular dementia. There is increasing evidence that these same factors also put people at greater risk of Alzheimer’s Disease.

32. Vascular Dementia Memory problems
The many small strokes associated with vascular dementia affect memory over time.
Changes may be subtle and slow.
It is often difficult to tell by symptoms whether the dementia is due to small strokes or Alzheimer’s Disease. Both are slow processes, but the symptoms of vascular dementia sometimes can be recognized to be more stepwise with an abrupt change in a person’s mental abilities, a period of few changes and then more abrupt changes. People with vascular dementia are also more likely to experience loss of physical functions or weakness in a part of the body early in the process.
Today, MRI and CAT scans allow doctors to see the damage from strokes in the brain and know if this is a probable cause of the dementia. Since vascular dementia is related to diseases of the heart and blood vessels, it may be prevented or the development delayed by effective management of cardiovascular risk factors.
DAMAGE

33. Vascular Dementia Language and communication problems
Can’t speak or uses wrong words
Can’t understand what others say
Talks using words that are not understandable (gibberish)
The strokes associated with Vascular Dementia may affect areas of the brain associated with functions other than just memory. If the language area of the brain is damaged, the person will have communication problems, in addition to memory problems. Problems will include the inability to speak or difficulty giving the correct name for objects. Damage to this area may also cause some people to be unable to understand speech– they cannot understand what is being said to them.
Vascular dementia can also result in movement problems, behavioral issues and other changes in function, depending on where the strokes are located.
DAMAGE

34. Frontotemporal Dementia
DAMAGE
A rarer, but particularly devastating form of dementia is called Frontotemporal Dementia. The name reflects the fact that the disease attacks the frontal lobe of the brain first. This diagram illustrates the different areas of the brain. The red area is the frontal lobe, the area of the brain that controls judgment and behavior. It is the areas of judgment and behavior in which we see the early symptoms of this disease. Eventually the disease will affect other areas of the brain and memory will begin to decline.

35. Frontotemporal Dementia
Early behavioral and/or language changes may include--
Talking in a “jumbled” fashion that is difficult or impossible to understand.
Cursing, becoming angry easily.
May behave in ways out of character with his/her past history.
This is not a common form of dementia, but one that can strike at young ages and can be particularly disturbing to families. The individual with this form of dementia may display very inappropriate behaviors before there are significant signs of memory loss. People who have normally been very pleasant and mild-mannered may begin to curse, become angry easily, and sometimes behave in aggressive ways. Others will have a pleasant demeanor, but may say things that are inappropriate and sometimes embarrassing to family and others.
In the Resources Section of the Instructor’s Manual is a link to a video, “Ann in 2010”. This video shows the behavior of a woman with Frontotemporal Dementia. You may want to show it at this point if you have an Internet connection.

36. The types of dementia discussed in this presentation -
are the result of insults to the brain that lead to damage and destruction of parts of the brain controlling memory, judgment, reasoning, and eventually bodily control;
are progressive;
are not reversible at this time.
There are some forms of dementia, such as those caused by drug abuse, vitamin B12 deficiency, brain tumors, and some other disorders, that may be reversible. The types of dementia that we are discussing in this presentation are not as yet reversible and treatment only manages some symptoms, but does not change the progressive nature of the disease.

37. QUESTIONS?
Wrap Up:
Thank the participants for attending the session and remind them of the Resource Section in the front of their manuals if they wish to learn more about behaviors associated with Dementia.