1. Introduction to Dementia in People with Developmental Disabilities
Presented by:

2. Objectives Define dementia and its symptoms.
Know the risk of developing dementia for people with DD.
Understand how dementia causes changes in communication, self-care abilities, and behavior
Know how to use “The 3 R’s” of communication
Name the four causes of distressing/disruptive behavior change in dementia
In this workshop, we will learn to:
Define dementia and its symptoms.
Know the risk of developing dementia for people with I/DD.
Understand how dementia causes changes in communication, self-care abilities, and behavior
Learn how to respond to changes in communication, self-care abilities, and behavior.

3. Dementia: What is it?

4. What is Dementia?
Loss of cognitive functioning serious enough to interfere with daily functioning.
Causes changes in:
memory
language
executive function (planning, organizing, and attention)
visual spatial skills
judgment/reasoning
personality / mood
Say: A diagnosis of dementia means the individual has difficulty that is significant enough to disrupt daily life in 2 or more of the categories above.

5. Dementia ...affects more than memory
...symptoms vary from person to person
...risk increases with age
…is progressive
…is an umbrella term
…is different than an intellectual or developmental disability
In fact, memory may be spared in some types of dementia.
We’ll talk about most of these statements in the following slide
dementia is a very individual experience, and symptoms can vary widely from person to person .

6. I/DD vs. Dementia
Developmental disabilities: The existence of impairment in physical, learning, language, or behavior areas. These conditions begin during the developmental period and usually do not decline noticeably with age.
Dementia: A widespread loss of mental or intellectual skills and existing abilities - losses occur in memory, language skills, orientation, activities of daily living (ADLs), and/or personality
As this slide shows, changes attributed to dementia must be declines from the individual's usual level of ability- no matter what their usual level of ability is.
In short, I/DD means not reaching statistical norms for skills and abilities, while dementia is experiencing a statistically significant decline in usual level of skills and abilities.
It is important for us to remember that I/DD and dementia are different, because it helps us adjust our expectations and behaviors accordingly!

7. Dementia Vascular Huntington’s dementia disease Lewy Body FTD disease
Again, dementia is an umbrella term, meaning that it emcompasses many diagnoses. Just like there are many kinds of developmental disability, there are also many types of dementia, about 70 different types in total.
All of the conditions above (vascular dementia, AD, LBD, etc) are different TYPES of dementia. It’s important to know that all dementias have different causes and therefore we can expect different changes at different times, or expect different interventions to be more or less effective based on the specific diagnosis. Therefore, if you have a patient with a non-specific diagnosis, it may be helpful for both you and the family to investigate further to help understand what’s happening now and plan for the future. It’s similar to if I told you I have a client with I/DD. You’d have an idea of what broad areas they may need help with, but you would know much more of what to expect if I told you they had Autism, or Fragile X or Down syndrome.
Lewy Body
disease
FTD
Alzheimer’s disease

8. Functions of the Brain Language, sense of temperature, touch, pain
Judgment,
reasoning,
Vision
Memory,
Language
One of the main ways we determine type of dementia is by looking at what areas of cognition a person is having trouble with. Because we know that specific areas of the brain control different functions, and each type of dementia tends to follow a pattern of damage in the brain, looking at what functional areas a person is experiencing declines in is a great way to help know what type of dementia a person has. However, many types of dementia progress to cause global loss of functioning, so getting an accurate diagnosis in the middle to late stages of the disease is much harder because the different dementias look less distinct.
Movement,
Balance
Basic functions,
Including breathing

9. Dementia and I/DD- What’s the Connection?
In general, adults with I/DD have the same risk of developing dementia as the general population
EXCEPTION: Adults with Down syndrome are at increased risk (about 5-6x higher), particularly for Alzheimer’s Disease.
Younger onset
Faster Progression
So why do we care? Because people with all types of I/DD are living longer, they are increasing their risk of developing dementia, a new challenge for service providers and family caregivers. Because of this “graying” of people with I/DD it is important to be familiar with dementia so you can recognize it and respond accordingly.
Read off slide.
we’ll talk about why people with DS are at higher risk in a few slides, but for now,the most important thing to know is that they are at much higher risk.

10. Dementia Prevalence General Population Down Syndrome Age Percentage
40+
65+
11%
85+
32%
Age
Percentage
40+
22%
60+
56%
80+
So how do these risk factors translate into diagnoses of dementia for people with DS? Well as you can see, people with DS develop dementia much younger than the general population (including those with other I/DDs) and at much higher rates. As you can see, the incidence of Alzheimer's disease in the adult with Down syndrome is estimated to be approximately 5- 6 times greater than in the general population.
Furthermore, Various studies estimate that a person with Down syndrome has a 75 to 100% risk of developing Alzheimer’s Disease in their lifetime. However, these figures represent the risk of developing the signature plaques and tangles in the brain, not outwards signs/symptoms of dementia.
Matthew P. Janicki and Arthur J. Dalton (2000) Prevalence of Dementia and Impact on Intellectual Disability Services. Mental Retardation: June 2000, Vol. 38, No. 3, pp

11. What is Alzheimer’s Disease?
The most common form of dementia
A disease of the brain that destroys brain cells, causing problems with memory, thinking, and behavior
Thought to be caused by changes in two brain proteins, causing “plaques and tangles” in the brain.
A progressive disease with no cure that is eventually fatal
So what are the common types of dementia? We’ll start with Alzheimer’s as it’s the most common form of dementia. Approx % of dementia is attributable to Alzheimer’s disease.
As many as 5.3 million Americans have AD. Approximately 1 in 9 people 65 and older, and 1 in 3 people 85 and older have the disease. Again, knowing that the risk for people with I/DD is the same as the general population, that means that 1 in 9 of your clients/consumers/family members have AD. Again, unless the person has DS, in which case the risk is much higher.
Alzheimer’s is a progressive disease, which means that it worsens over time. The disease progresses gradually but steadily through stages. Symptoms that are seen in the early stage of the disease become more severe over time and new symptoms appear as the person enters middle and late stages. Because the onset of Alzheimer’s disease is gradual, it may be difficult to pinpoint exactly when the disease began.
So what causes these brain changes? Scientists are not absolutely sure what causes cell death and tissue loss in the Alzheimer's brain, but they do have a leading suspect. You may have heard of them. They are called plaques and tangles.
Beta-amyloid plaques, clusters of protein fragments, build up between nerve cells.
Dead and dying nerve cells contain tangles, which are made up of twisted strands of another protein, tau.
Since AD is a brain disorder, and our brain controls all that we are and do, everything the person does, thinks, feels, etc. is ultimately affected over time, including breathing, fighting infections, etc. making Alzheimer's the 6th leading cause of death in the US

12. A Conceptualization
One of the most commonly known signs of alzheimer’s is memory loss, and understanding and conceptualizing how this happens can help us as caregivers be more patient with those we care for and develop better strategies for helping them.
Alzheimer’s/book metaphor:
Your brain is like a journal. Every day you write down what happens in your journal, and you file those pages in chronological order. Earlier memories in the beginning of the journal, more recent ones towards the back. You use your journal to help you remember and guide your interactions with the environment.
Early stages of AD:
Your pen runs out of ink. You misplace your keys, repeat yourself, etc because you can’t write down where you put them/that you just said that.
Middle Stages:
Pages start to fall out of your journal, starting in the back and working their way forwards. This is why people may refer to having to go to work or to school, even if they haven’t been to either in years: the pages that reference their retirement or leaving school are gone. The pages that are left, the ones that guide their behavior, reference work or school. It is futile to try and re-orient individuals because they have no supporting documentation in their own head that what you say is true and even if they did believe you, they have no way of “writing it down” in their brain.
People also lose self-care abilities because they are missing the journal pages that instruct them on how to complete tasks. Things they learned younger in life will remain longer than more recently acquired skills because again, pages fall out in reverse order.
Late Stage:
All or most language may be lost because those pages are now gone. They will need help with all self cares because those pages are gone. They retain very basic bodily functions that don’t rely on memory or learned skill only.

13. So what does this loss of pages look like
So what does this loss of pages look like? Well, here is an example of how AD affects the brain. This is an extreme example of someone with late-stage AD. In the early stages of the disease the change is not necessarily detectable on any sort of brain scan (at least not an MRI or CT) as the changes caused by Alzheimer’s disease are microscopic. It’s only after they accumulate over many years and many, many neurons die that atrophy, or shrinkage, is pronounced. It should also be noted that some people can function quite well with significant atrophy and vice versa.
Atrophy is particularly noticeable at the ventricles (the normal holes in our head that hold spinal fluid and cushion the brain) and the folds of the cortex, the “hills and valleys of the brain” Notice how much extra space there is between the folds of the right brain compared to the left

14. The Science of Brain Change
Brain changes begin years before symptoms begin to show.
“Cognitive Reserve” / redundancy allows our brains to weather changes for a period of time without noticeable decrease in functioning
It’s important to know that for many types of dementia, changes begin accumulating in the brain years if not decades prior to symptoms first appearing. Atrophy, or shrinkage of the brain can also vary widely between people with the diagnosis, with some people displaying lots of the characteristic plaques and tangles of AD being quite functional, even cognitively “normal” while others who show less change in the brain may have many more symptoms. This may be due to differences in “cognitive reserve” or our brain’s tolerance to damage. Some of us may have more cognitive reserve, allowing us to experience changes without change in functioning, while others may have less.

15. Other Risk Factors for Developing Alzheimer’s Disease
High Blood Pressure
High Cholesterol
Diabetes
Traumatic Brain Injury
Autoimmune diseases (Rheumatoid Arthritis, Lupus, Celiac Disease, etc)
Sleep Apnea
One way to think of brain changes is with the concept of the straw that breaks the camel’s back. The camel (your brain) can carry so many straws (brain changes/stressors), but after too many straws are added, the camel’s back breaks (your start showing outward signs and symptoms of cognitive change).
Another reason people with DS may be at higher risk of AD is that they tend to have high rates of these risk factors, particularly sleep apnea, celiac disease, high BMI, and cardiovascular disease.
Reduced cognitive reserve may also explain why people with DS have the shortest length of disease process and people with other IDs have shorter disease length than the general population.
Again, while people with non-DS I/dDs have the same risk of dementia as the general population, those who have a history of self-injurious behaviors involving the head are at higher risk due to repetitive TBIs.

16. 10 Warning Signs of AD Memory loss that disrupts daily life
Challenges in planning or solving problems
Difficulty completing familiar tasks
Confusion with time or place
Trouble understanding visual images and spatial relationships
New problems with words in speaking or writing
Misplacing things and losing the ability to retrace steps
Decreased or poor judgment
Withdrawal from work or social activities
Changes in mood and personality
In general, signs of dementia in the I/DD population are the same as the general population. However, changes in self-care abilities may be affected earlier and there may be more behavioral changes rather than changes in memory. In addition, in people with DS new-onset seizures is another warning sign of AD that is not found in other population groups.

17. Common Behavior Changes
Loss of interest in usual activities
Repetitive questions or stories
Difficulty doing usual activities or self-care
Loss of interest in personal appearance
Unable to learn a new task or routine
Trouble following a conversation or TV show
Difficulty following multistep directions
Getting lost in familiar places
Suspiciousness
Anger, irritability, or aggression
Sadness, anxiety, or fearfulness
Increased noises or excitability.
These are the common behavior changes in people with i/dd that may be indicative of dementia
increased noises means the person make more non-word sounds.

18. Vascular Dementia
Vascular dementia is a decline in thinking skills caused by conditions that block or reduce blood flow to the brain.
Areas of cognition affected depends on where the damage in the brain is located
Progresses in a stepwise pattern
Is the second most common cause of dementia.
Vascular dementia is a decline in thinking skills caused by conditions that block or reduce blood flow to the brain. This reduced blood flow deprives brain cells of vital oxygen and nutrients, damaging them. .
In vascular dementia, changes in thinking skills can occur suddenly following strokes that block major brain blood vessels. The person may experience long periods when symptoms are stable and periods when symptoms rapidly get worse. This is because each additional stroke causes further damage to the brain.
Or they may begin as mild changes that worsen gradually as a result of multiple minor strokes or other conditions that affect smaller blood vessels, leading to cumulative damage.
HOw a stroke affects your thinking and reasoning depends on your stroke severity and location.
Factors that increase your risk of heart disease and stroke—including high blood pressure, high cholesterol and smoking — also raise your vascular dementia risk. Controlling these factors can help lower your chances of developing vascular dementia.
20-30% of dementias are vascular dementia

19. Vascular Dementia http://vista.engines4ed.org/
This photograph shows evidence of a stroke in the area of the brain. There was an isolated pocket of blood where you can now see a hole.

20. Lewy Body Dementia
LBD is a an umbrella term for two related clinical diagnoses, dementia with Lewy bodies and Parkinson's disease dementia
A progressive disorder that is eventually fatal
The third most common cause of dementia
LBD is a an umbrella term for two related clinical diagnoses, dementia with Lewy bodies and Parkinson's disease dementia. Both are caused by the same changes in the brain, called Lewy Bodies. The difference is what type of symptoms appears first, the physical features of parkinson's or the cognitive features of dementia.
The average duration of LBD (from the time of diagnosis to death) is 5 to 7 years, compared to for AD.
10-25% of dementias 

21. Common Symptoms/Signs of Lewy Body Disease
Changes in thinking and reasoning (executive dysfunction)
Confusion and alertness that varies significantly from one time of day to another or from one day to the next
Parkinson's symptoms, such as a hunched posture, balance problems and rigid muscles
Visual hallucinations
Delusions
Trouble interpreting visual information
Acting out dreams, sometimes violently/aka (REM) sleep disorder
Malfunctions of the "automatic" (autonomic) nervous system
Memory loss that may be significant but less prominent than in Alzheimer's
These are the common signs/symptoms of LBD. Notice How they differ from AD.

22. Differential Diagnoses
Drug side effects
Emotional disorders
Metabolic disorders (e.g., hypothyroidism)
Eye and ear impairments
Nutritional (e.g., B12 deficiency)
Tumors
Infections
Alcohol and street drugs, use
Sleep apnea
Not all memory and behavior changes are dementia!
It’s important to note that many, if not all of the changes I’ve just told you about..decline in memory, personality changes, hallucinations, loss of interest in activities, agitation, etc can be caused by things other than dementia. Therefore, it’s important that if you notice any of these symptoms, , you don’t automatically think it’s dementia and not try to rule out other possibly reversible causes, such as any of the above. Reversible causes of dementia are called delirium.
Even if someone has an established diagnosis of dementia, if you notice a sudden change from the person’s new normal, it’s important to rule these out at a cause, though we’ll talk about that later on in the presentation.
Notice how it spells “dementias” if you read the first letter of each. Aka you have to rule out all these causes before you can dx dementia.
Also add pain
Changes in behavior should always be assessed, because some causes, such as the ones listed above, may be treatable. However, their signs and symptoms are easily misdiagnosed as dementia which means people are experiencing unnecessary cognitive deficits.

23. Changes in Communication

24. Cognitive Changes Affecting Communication
Dysfunction in at least one area identified with memory: registration, retention, storage, and retrieval
An individual may require several sensory inputs (visual, auditory, and tactile) to help them remember/comprehend
Registration: Understanding and remembering what words mean. This can look like not understanding previously known words, trouble understanding implied meanings or idioms (hop in! that really gets my goat, etc) or slang.
Retention: Being able to properly organize that information and move it from STM to LTM. Failure here can look like repeating or asking repetitive questions, because they’ve forgotten that it’s already been said or asked.
Storage: Once it gets into LTM, putting it in the right place and making sure it stays there (someone can remember something for a few minutes, but may forget in hours or days).
Retrieval: Being able to find it and use it quickly. (This can look like lying or making up stories. People may mis-remember something because two memories may be jumbled together, or there are holes in a memory so they fill in the blanks as best they can).
Using gentle teaching as a guide for communication hits all of these, because again we are using our eyes and presence (visual), words (auditory), and hands (tactile) to communicate.

25. Other Changes that Influence Communication
Poor attention
Impaired judgment
Poor sequencing/organization
abilities
Poor attention: If I’m not able to focus and pay attention to what’s happening, I’m not going to be able to remember it
Impaired judgement: knowing that words and gestures have meaning and being able to interpret them and use the information appropriately.
Poor sequencing/organizing: knowing what order to communicate words in, being able to store information in correct order

26. Tips to Facilitate Communication
Allow for more processing time
Use shorter sentences
Use concrete, familiar terms
Give limited choices
Avoid yes/no questions or asking “do you want to” when appropriate
Make things their idea
Turn negatives into positives
Use nonverbal communication!
Allow for more time: if someone is having trouble with communication, it may take longer to process what you’ve said and/or formulate a response, so be sure to give people LOTS of time to respond. Some people recommend up to 60 seconds, which is not practical, in my opinion, but you should at least give them a solid ten.
Use shorter sentences: if you are having trouble remembering information, getting information one step at a time, and in short sentences is much easier. For example, which is clearer and easy to remember;
IT’s supposed to be really cold outside today, so we should all bundle up to stay warm. I want you to put your coat, boots, hat, and gloves on and then we’ll be on our way to the restaurant for lunch.
It’s cold out. Please put on your coat. Next: Let’s put on our boots now. NExt: Let’s put on our hats now. Next: let’s put on our gloves. Last: Let’s go to the restaurant for lunch!
Use concrete, familiar terms: If someone has always said, “ I need to go potty.” DOn’t ask them if they need to use the bathroom, the toilet, or if the need to pee. Try to avoid sarcasm, implied meanings “eg. jump to it, ants in my pants”
Limited choices: Choice can be overwhelming for someone with dementia. Asking open ended choices like, “what do you want for breakfast” means that the person has to 1. recall all the things they have eaten for breakfast and remember which they liked and didn’t like. FOr a brain that is having trouble retrieving information from storage, this can be nearly impossible. HOwever, giving two choices, such as “do you want cheerios or eggs” makes it much easier.
Avoid yes/no or asking “do you want to?”: If you don’t want the answer “no”, don’t ask a yes/no question. THis is a huge hint for people who seem apathetic and withdrawn. A lot of people with dementia develop trouble with planning, organizing, and sequencing, so they may appear apathetic and even depressed, but this is because their brains don’t know how to start an activity, so they sit idle. Even if we ask them if they want to join us in doing something, they may say “No” because again it’s too much for their brain to have to process “have I done this activity before, did I like it, do I have what I need to do it again? How will it be to do it with this person, etc” so it’s easier to say “no”. However, if we tell them, “come do this activity with me” they don’t have to think about those things, because the choice has been made for them. They still have the option to say, “no, thank you, i’d rather not, but we’ve made it MUCH easier to say yes. Similarly, don’t ask, do you want to come to lunch? Say, come sit at the table for lunch.
Make things their idea: If you notice that there are things the person still refuses to do, make it their idea, for example, if someone is refusing to eat, say, “I made you a grill cheese like you asked for” even they didn’t request anything. Most people don’t like admitting that they’ve forgotten something, so they’ll go along with you to “save face”.
Turn negatives into positives: Never say, “You can’t do that”. Say, “let’s do this instead” For example, if someone says, “I want to go to workshop today.” and you know they are not longer attending because they were disruptive/not working, don’t say, “You can’t go there anymore because it was too hard.” Say, “today, we are going to hang out together instead!”
Last but not least, when all else fails, or even to supplement things that work, use non verbal communication! Show people the two breakfast options, point to where you want them to go or what you want them to put on. Smile when you ask them to join you for an activity or complete a caregiving task so you seem friendly and someone they want to spend time with/please. Try to keep you stress at home, people really can pick up on that, even when we think we’re hiding it.

27. What To Avoid Arguing with the person Ordering the person around
Telling the person what they cannot do
Being condescending
Asking, “Don’t you remember?”
Talking about them in front of others
Arguing: Arguing is adversarial and creates a me vs. you mentality. No one wants to do a favor or get very intimate personal care done by someone who is against them. Furthermore, you’re unlikely to convince them of your argument if they are having trouble with remembering facts, reasoning, etc. So don’t do it! It’s a waste of time!
Ordering the person around: Again, gentle teaching is about building relationships. You want to come off as a friend, not a dictator.
Telling the person what they cannot do: Adults want to feel independent and in control. Telling them they can’t do something is likely to make them want to do it even more!
Being condescending: No one likes to me made inferior. It’s terrible for building relationships based on trust and respect.
Asking, “Don’t you remember?”: If you have to ask, the answer is probably no, and pushing that to the forefront of someone’s mind can be upsetting. Try to avoid confronting the person about their memory loss as much as possible.
Talking about them in front of others: Even if expressive (spoken) language is very impaired, you never know how much they are comprehending, so just don’t do it! It’s rude!

28. The 3 R’s Right Reassure Redirect
The person with memory loss is always right. Always.
Reassure
Respond to the emotion, not to the words
Redirect
Change the subject to something else
What does this look like in practice? Well, it really boils down to three easy principles that we call The 3 R’s. And frankly, this is probably the most important slide of the entire presentation.
Right
The first principle is that the person with memory loss is always right. Always. Do not argue, disagree, or attempt to correct them. This will only make you a foe rather than a friend. You are unlikely to convince them that your reality is correct and theirs isn’t. Therefore, the best course of action is always to agree with them. If someone says that their glasses have been stolen and you know they likely just misplaced them because they are always setting them down somewhere. DON'T SAY “You probably just lost them” Say, “I’m sorry they’re missing!”
Reassure
The next step is to be reassuring in what you say, with a focus on responding to the EMOTIONS of the message, not the facts. Going back to our missing glasses example, our example to say I’m sorry they’re missing, responds to the emotion that they are upset that they are gone. We could go one step further by saying. “I’m sorry they’re missing! How frustrating! Let me help you get them back.” This responds to how the person likely feels about their personal property being taken and addresses why they are telling you about it-they want them back and need your help.
Redirect
Finally, if all else fails, redirect. Use the STM loss of dementia to your advantage. Going back to our glasses example, if you know the glasses are at the eye shop being repaired, you might say, “Let’s look for them. We’ll start in the kitchen.” While you’re there you can then say, “Gee, an ice cream cone sounds good to me, how about you?” and start talking about other things.
Of course, you will have some people who you can easily reorient to reality and they happily accept it. If so, fantastic. This is just a way of interacting with people for whom that doesn’t work.
Also , I always get someone during every training who raises their hand and asks, “What if the person wants to do something dangerous, like put the dog in the microwave to dry her off after a bath? I can’t agree to that!” I have to respond with, well, if you tell the person “No you can’t, what are they going to say? Oh yes I can!” Instead, you say, wow, what an interesting idea (they’re right), you sure are creative and that will be really helpful to get her dry quickly. But first, we need to get her brush so we can make her fluffy when she gets out. Then, you unplug the microwave while the person isn’t looking, so it’s “broken” and when you’re getting the towel you distract her with some other task/story.

29. Thoughts on “Lying”
Validating the person’s reality (even if this involves “therapeutic fibs”) is respectful and person centered
Therapeutic fibs serve the greater good by helping reach our ultimate care goals-keeping the individual safe, happy, and healthy.
Ok, some of you have now probably caught on that I am giving you permission to “lie”. We advocate this perspective because our intent isn’t malicious, but rather an intervention to meet needs and promote quality of life. If were are constantly trying to shoe-horn the individual with dementia back into reality, we are likely going to make them upset, frustrated, angry, agitated (and possibly at risk of harming themselves or others) and stressed. These are terrible outcomes, and why using therapeutic fibs with those who get upset when reoriented is your best option.
Some people find it easier to conceptualize this as improv acting. The person with memory loss is giving you a scene, and you need to respond to it as though it is real. The circumstances may be bizarre or not based in reality, but it’s your job to make sense of them and tell a coherent story that makes sense given the information presented to you.

30. Changes in Self-Care Abilities

31. Cognitive Changes Affecting Self-Care Abilities
Memory loss
Impaired judgment/reasoning
Impaired attention/distractibility
Poor sequencing/organization abilities
Poor sensory perception
Just like changes in communication, changes in self-care abilities are due to the changes happening in the brain. If we can identify which change is most likely causing the problem, we can focus on interventions there to try and maximize independence.
Memory loss: people may forget to to perform self cares, so simply giving them some sort of reminder-verbal, visual, etc may be enough to help. Similarly, people may forget that they have or have not done something (for example, saying they took a bath yesterday when really it’s been a week) or wanting to brush their teeth multiple times because they forgot they’ve done so. Again, Don’t argue with someone’s reality! Instead, think of a way to work within in. For example, for the person who is refusing to bathe because they just did so yesterday, say, “well, we have something special planned today, so let’s wash up again” or walk away and offer it like the first time to see if their memory has shifted.
Impaired judgement/reasoning: person may no longer understand why performing a certain task is important. For example, they may not be able to understand that if they don’t change out of a wet brief, they’re at risk for skin breakdown. If my eyes can see what is on the bathroom sink, but my brain can’t process what everything is, I may pick up my toothbrush and brush my hair with it.
impaired attention/distractibility: If I have trouble paying attention to what you tell me to do, I’m unlikely to remember to do it. If I am distracted while doing it, I’m unlikely to complete it.
Poor sequencing/organization: If I know all the steps, but do them in the wrong order, the task may not get done correctly. POST IT NOTE EXAMPLE:
IMagine all the steps for getting dressed are written on a post-it note and stuck to the wall in the order I am to do everything. If the post its get shuffled (the sequence is off), I will do things in a strange order. For example, If you tell me to change into clean clothes, I may out my pants on then my underwear, rather than the more traditional underwear then pants.
If a post -it goes missing, I might skip that step all together, so I may not take my dirty clothes off before I put my clean ones on, so I may put my clean underwear on over my dirty underwear.
If sequencing is completely gone, aka all the post its are in a pile on the floor rather than in order on the wall, I may not even be able to start the activity because I can’t establish the sequence, even though I could do all the individual steps. .
Poor sensory perception: If i am having trouble with my senses, I may not understand why self-cares need to be performed. For example, If i can’t see that my shirt is dirty, i may not think i need to change it. Similarly, if I misperceive the environment around me, that may hinder my ability to care for myself. For example, If I perceive my reflection in the mirror as someone else, I may not want to enter the bathroom because it’s occupied. If I can’t distinguish the while chicken on the white plate, I may not eat it. If I can’t find the silverware on a busy placemat, I may eat with my fingers.

32. Tips to Facilitate Independent Self-Care
Give fewer steps at a time/break steps down into smaller sub-tasks
Add cues to the environment
Provide standby assistance/cues
Simplify environments/limit distractions
Ensure good lighting
Give fewer steps: As dementia progresses, routine tasks may become too complicated for the person to execute unassisted. (there are too many post-its on the wall) In fact, changes in abilities to complete ADLs is one of the more common symptoms of dementia in people with I/DD.
As an example, how many steps are there in brushing your teeth? [Ask for guesses, examples] Even a task as familiar as brushing your teeth can actually be broken up into 30, 40, or more steps (e.g. recognizing the need to brush, navigating to the bathroom, turning the bathroom light on, finding the toothbrush, finding the toothpaste and differentiating it from other creams and pastes that may be nearby, etc., etc.). As caregivers, we need to consider the complexity of tasks that involve numerous or implied steps. We will need to break activities into smaller and smaller increments over the course of the disease– in the later stages, only 1 step increments may be tolerated.
Add cues: Cues remind us what we need to do, where we need to do it, and where all the things we need to do it are located. Try adding signs with pictures and printed words to help orient people to the environment, which can help them be more independent, longer.
Provide standby assistance/cues: Sometimes, people just need someone to be there to help them over the humps and keep them on track. THe key is to not do things for the person, but rather assist with what is hard and step back for the parts they can do independently. Even if it takes them longer to do something that it would for you to do, it’s important to allow them to be as independent as possible to keep self-esteem as high as possible and avoid artificially accelerating their decline.
Simplify Environments/limit distractions: Avoid loud noises (TVs or radios), overly cluttered rooms, lots of people talking in the background, lots of movement from other people in the environment, competing activities (someone else doing something), etc.
Ensure good lighting: Older adults can need up to 3x as much lighting to see clearly, so don’t be afraid to turn up the lights. Shadows can be misperceived as anything from holes in the floor to people by those with dementia. However, try and avoid glare, as this can make floors look like standing water or ice.
Remember, that dementia is progressive and even if you use all of these interventions perfectly, people will still decline and become more dependent on you for assistance with self-cares. The goal here is not to keep people at their current level forever, because that would be impossible. Instead, the goal is to keep them as independent as possible based on their current level of need.

33. Changes in Behavior

34. What are Behaviors?
The ways in which someone or something functions or operates
Actions and responses to stimuli
Ways in which we conduct ourselves
Communication!
Behavior is a familiar concept to us all. We are constantly reacting to our environment, responding to our own needs, interacting with others, etc. Behavior can be learned or instinctual. Our behavior might be impulsive or planned, destructive or helpful. All behavior has meaning. Notice that nothing in this definition says the behavior is negative.
Alzheimer’s disease and related dementias can cause a person to act in different and unpredictable ways. Some get anxious or aggressive. Some ask the same question over and over again. Many misinterpret what they hear. These types of behaviors can lead to misunderstanding, frustration, and tension. It’s important to recognize that the person is not acting this way to be upsetting, but rather to communicate needs.
Putting ourselves into the PWD’s world and understanding the behavior from their perspective is key for care providers. It is essential that we effectively interpret behaviors and understand behavior as a form of communication.

35. When is Behavior a Problem?
It violates the rights of others
It poses a threat to someone’s health and safety (including his/her own)

36. Common Distressing/Disruptive Behaviors
Asking repetitive questions
Neglecting personal hygiene
Yelling
Crying
Pacing/Wandering
Wanting to go home
Rummaging
Self-talk
Resisting care
Delusions/False beliefs
Please note that not all people with dementia will experience all or even most of these symptoms. And some of these symptoms may not fall under the category of “distressing or disruptive behaviors” all of the time. For example, the person may enjoy pacing/wandering the home without trying to get out, or if the person’s false belief is pleasant, such as enjoying watching children (who aren't really present) play in the corner of a room. Some behaviors may be very annoying to caregivers (such as self talk, when the person’s “inner monologue” is constantly being voiced), but really isn’t something that is necessarily distressing, just a nuisance.

37. A Shift in Perspective
Because behaviors caused by Dementia are different than those caused by I/DD, they need different solutions.
This session should help you change your perspective on how to “manage” behaviors. Some behaviors on the previous slide can be caused by I/DD, not only by dementia. However, if this is a new behavior for the individual, dementia is likely to be at least a contributing factor. If old ways of coping with lifelong behaviors no longer work, dementia may be why. For example, Positive Behavior Support (PBS), a common philosophy of interacting with people with I/DD, says that we should try and reinforce desired behaviors and ignore undesirable ones. However, this strategy won’t work for someone with memory loss, as they are unable to remember the reinforcement.

38. Common Causes of Distressing/Disruptive Behaviors
Person
Environment
Task
Caregiver
When confronted by a distressing/disruptive behavior, you need to become a detective and investigate WHY the behavior is happening. Again, behavior is communication! Our job is to try and figure out what the behavior is trying to tell us and meet that need.

39. Person
Changes in the brain from dementia can erode intentionality of behavior and ability to appreciate consequences.
Behavior often becomes more instinctual as the disease progresses.
Other physical health causes or medication side effects can cause behavior change
The first area to assess is the person. It’s important to keep in mind that the changes in the brain causing memory loss can also be the cause of behavior changes.
Although we understand that most adults behave in a deliberate, self-directed manner (most of the time), this intentionality of behavior is gradually lost in the person with dementia. They may react to the environment, physical needs, other people, etc.; however, their behavior is more of an immediate (as opposed to premeditated) response to their circumstances. Therefore, it is often more instinctual (e.g. the PWD might be frightened by an angry face, rather than realize it is her normally-friendly daughter in an angry mood). Their different perception of reality may also affect their behavior (e.g. the PWD might believe they are a younger and need to go to school rather than remembering that they graduated years ago).

40. Cognitive Changes Affecting Behaviors
Memory loss
Impaired judgement
Disinhibition
Poor sensory perception
Memory Loss: Some behaviors are a natural result of losing STM. For example, repeating questions even though they were just given the answer is due to short term memory loss. Not recognizing their home as their own and wanting to go home (to a childhood home) makes sense if the “journal” pages with their current home have vanished and their childhood home is all they can remember.
Impaired judgement: When the front part of the brain is damaged, not only does behavior become more instinctive and reactionary than it was before, as mentioned in the previous slides, it can also impair our judgement. So we may use things in strange ways (brushing our hair with a toothbrush), or not take basic safety precautions, such as not looking both ways before crossing a crowded street or eating an item at the store before paying for it.
Disinhibition: Our frontal lobe is also in charge of disinhibition, or the “safety net” that keeps us from doing or saying things immediately. When it’s damaged by dementia, we may do inappropriate things to inappropriate people (touching a caregiver like a lover) or saying things we wouldn’t have said before (like swearing) or making rude comments to those around us.
Sensory Perception: Normal age-related changes to our senses can be extra difficult for people with I/DD and dementia to compensate for, and may cause some behavior changes. Similarly, dementia can damage how the brain interprets sense, so even if the senses themselves are working perfectly, they may have trouble responding to them appropriately. For example, someone may see plastic fruit, and not be able to tell if it’s real or fake because of visual changes from cataracts or macular degeneration and take a bite. A change in how her body interprets the texture and taste of the fruit may result in her continuing to eat it because her brain isn’t giving her the right clues that it’s not real food.

41. Common Physical Health Causes
Effects of medication
Acute or chronic illness
Physical discomfort or pain
Dehydration
Constipation
Fatigue
Depression
Impaired vision or hearing
So what are these other “Internal factors” in the person that can cause behavior changes? All of the above. It’s important to note that there are often other things happening in the person with dementia that are causing behavior changes, and the behaviors are the only way of letting us know. If we assume someone is doing something simply because they have dementia, we’re going to miss out on a whole host of ways to intervene and potentially stop, not just respond to, the behavior and improve quality of life for the individual.
Medications: All medications have side effects, and as we age, our kidneys become less efficient at clearing medications from our body, meaning that more medication stays in our system, making us more likely to have side effects, even if we’ve been on the same medication for years. It’s also true that as we get older we tend to take more medications, increasing risk of drug interactions, which can also cause behavior changes. Medication side effects can cause pain, discomfort, sleep disturbances, etc. A physician should rule out this possibility and readjust the medication regimen, if needed.
Acute or chronic illness: Fractures and infections such as UTIs and the flu are examples of acute conditions that can significantly impair quality of life and contribute to behavioral disturbances. Many people with I/DD have an increased risk of fractures due to osteoporosis, including stress fractures of the spine that can be quite painful but not always diagnosed. UTIs are probably the number one cause of acute behavior change, and often behavior changes, not the typical signs of frequent urination, burning, odor, etc., is the only sign of infection. Other medical conditions such as arthritis, which can be painful, diabetes and hypothyroidism can also cause mental status changes that manifest as behaviors.
Physical discomfort or pain: Care providers should always be alert to the possibility of pain. As the dementia progresses, the person is less able to identify and report pain, but will still experience pain. Even mild physical discomforts like being too hot, too cold, too itchy, hungry, etc. can all cause “unwanted” behaviors to occur. When in doubt as to whether someone is in pain or not, try giving an over the counter pain medication around the clock, (not “as needed” which this population is unlikely to request) to see if that helps.
Dehydration: Dehydration is a common phenomenon among older adults, particularly those with dementia. Dehydration can cause disorientation and confused thinking – making the problems associated with cognition worse. It is important to ensure proper hydration. The PWD may no longer recognize the urge to drink, or may be unable to communicate their need to a care provider.
Constipation: Constipation can produce pain and discomfort and cause changes in appetite.
Fatigue: Improper sleep can cause confused thinking and irritability. Of course, there are days when we all feel more rested, alert, focused and content, than on other days – for no particular reason at all. This is also true for the person with dementia. There are good days and bad days, good moments and bad. It is important for caregivers to understand that changes in functioning from day-to-day are normal.
Depression: Dementia commonly causes depression due to physical brain changes. Depression can involve short-term memory loss. Depression is treatable. Experts estimate that clinically significant depression occurs in about 20 – 40% of people with Alzheimer’s. Depression can impair quality of life and prevent one from participating in meaningful life activities. Depression can also exacerbate dementia symptoms, making memory loss and cognitive issues more severe. However, depression is treatable, and it is paramount that affected individuals receive relief from depression in order to preserve their overall well-being. In fact, the addition of medications such as Selective Serotonin Reuptake Inhibitors (SSRIs) such as Lexapro, Zoloft, etc. may actually help improve cognitive symptoms if the pwd is also experiencing depression.
Impaired vision or hearing: Sensory deficits, such as vision or hearing loss, can cause frustration, isolation, misinterpretation of stimuli, and difficult interactions. It is important that sensory issues are addressed: if the PWD requires a hearing aid, eye glasses, or another aid, these should be in use and used properly. Vision and hearing changes may occur over the course of the disease and should be evaluated periodically. It’s important to know that people with DS are prone to certain sensory issues, such as cataracts and wax impactions due to the structure of their ears.

42. Environmental Causes Excessive stimulation Poor sensory environment
Noise
Activity
Clutter
Poor sensory environment
No orientating information or cues
Unstructured environment
Unfamiliar environment
Imagine waking up and not quite knowing where you are. Trying to navigate your way through a maze. As the person with dementia tries to make sense of their environment, they may well suffer anxiety, stress, and confusion. It is also important to be mindful of safety issues, such as fall risks, when designing or decluttering the environment.
Excessive stimulation
As the dementia progresses, the person is able to tolerate less and less stimulation. Excessive stimulation from noise or bright lights, lots of moving people or animals, etc can increase confusion, disorientation, and agitation.
Unnecessary clutter can create confusion and agitation. Declutter and simplify the environment as much as possible. For instance, relocate staff notices on a bulletin board that is visible to residents. Remove unnecessary items in common areas.
Poor sensory environment
Sensory changes are common with normal aging and dementia. Again, what the person with dementia sees, hears and feels may not be accurate because the brain receives many simultaneous messages that it may not interpret correctly. The effects of sensory deprivation and poor sensory environment can be profound, causing difficulty for the person to engage with others, navigate, problem-solve and feel safe.
Stimuli in the environment can be misinterpreted. Patterned surfaces may cause optical illusions and television images may appear to be in the room. Mirror reflections may appear as intruders in personal space; shiny surfaces may appear to be wet and slippery; a dark floor mat may look like a hole. If possible, use matte floor coverings that are similar in tone to adjacent surfaces.
It is important to ensure that the environment is well-lit and if the person requires any sensory aids, they should be utilized. Some experts recommend doubling the normal amount of light and controlling sources of glare. Provide good color contrast between flooring, skirting, walls, and doors – where appropriate. Minimize ambient noise and ensure good acoustics.
No orientating information or cues
Visual cues can be provided as to the type of room and its function. A dining room which contains pictures of food and kitchenware offers clear clues as to the room’s purpose. Provide navigational cues such as signage, familiar way-finding objects, and pictures.
A person with dementia may have difficulty distinguishing between day and night, breakfast and dinner, coming and going, etc. It is important to provide verbal, visual, or tactile cues to orient the person.
Unstructured environment
An unstructured environment does not provide any clear cues as to the room’s purpose, the role of its occupants, or how the individual should behave. For example, I know a room with a toilet in it is a bathroom. But a room with a couch in it could be a living room, a waiting room at a doctor’s office, a furniture showroom, etc. Similarly, any room with a bed in it may look like my bedroom if I am sleepy and have forgotten what my bedspread looks like. Having orienting information on doors or in rooms to help people find the right room can help. Finally, establishing a routine, adding pictures to help define spaces, and offering orienting cues can help.
Unfamiliar environment
The environment should appear as familiar as possible, as opposed to adding confusion. Including familiar, meaningful items that belong to the person with dementia may help. Now is not the time to rearrange furniture or replace older objects such as comforters and appliances. Familiar objects in the environment help people feel safe, which reduces unwanted behaviors. If someone must be moved to an unfamiliar environment, provide navigational cues such as signage, familiar way-finding objects, and pictures and try to make the new environment as similar to the old one as possible.

43. Task-Related Causes Task too complicated/Too many steps combined
Task not modified for increasing impairments
Task unfamiliar
Task not structured
Task too complicated/Too many steps combined/ Task not modified for increasing impairments
As mentioned earlier, even a simple task like brushing your teeth has many sub steps. It’s important to remember that as the disease progresses, the person’s remaining abilities change and they may face losses in certain areas where they were once proficient. Caregivers must continuously evaluate the person’s strengths and deficits. A person in the early stages who can read parts of a recipe and measure ingredients, will one day no longer be able to do so. By not modifying tasks as necessary, we may see various negative outcomes, such as increased confusion, frustration, anxiety, agitation, etc. However, it is important to encourage the person’s regular participation in their daily routine; to promote feelings of self-esteem and well-being, the person should do as much for themselves as they are able. We should embrace the person’s current state of being, but also be mindful of the constant changes that occur with a dementing illness. This is an important difference from working with people with I/DD without dementia, and generally we can say that once we have found a strategy that works, it will work forever. However, dementia is a progressive disease, so modification and simplification will be needed as time goes on.
Task unfamiliar
A person who loved to cook before their illness may still enjoy doing so now. A cooking activity may be a good match for this person because the skills required are nested in long-term, overlearned, and procedural memory. By contrast, it may be difficult to successfully engage a person in the same task if they have never cooked. Being completely unfamiliar with an activity requires the acquisition of new knowledge and skills. This is very difficult for the person with dementia to accomplish because their ability to learn new information is impaired. However, it is important to be flexible and experimental when engaging PWDs: simply because they’ve never cooked before does not necessarily mean that the idea will be a flop, even if it is a riskier choice. The PWD, for instance, may enjoy assisting with meals because it allows them to feel helpful and purposeful. They may like the socialization and engagement that a cooking activity may entail.
Task not structured
An unstructured activity may cause the person anxiety, confusion, or agitation. It is extremely difficult for the PWD to engage meaningfully if it is not clear why they are participating in an activity and what their role should be. Defining clear expectations and reassuring the person can help.

44. Common Caregiver Mistakes
Unrealistic expectations
Misunderstanding the cause of the behavior change
Inappropriate communication patterns
Unrealistic expectations really means that not all behavior changes in dementia are able to be addressed. If you expect someone with Alzheimer's disease to remember the instructions you gave them yesterday, you are going to be frustrated and label someone “behavioral” for not following through.
In people with I/DD, it is also very easy to attribute changes to someone’s pre-existing I/DD, rather than the dementia, which will often cause you to address it in a way that isn’t effective.
Finally, caregiver communication skills are HUGE issues when trying to prevent or respond to behaviors, and perhaps the quickest and easiest thing to fix-with practice. 44

45. Thank you for listening!
Please don't forget to complete and turn in the intake form and evaluation to receive your certificate