PowerPoint Presentation

Are they doing this to annoy us?Behaviors and Alzheimers disease

Slide 1Opening slide

1

Welcome"This presentation was supported in part by a cooperative agreement (No. 90AL0002-01-00) from the Administration on Aging (AoA), Administration for Community Living (ACL), U.S. Department of Health and Human Services (DHHS). Grantees carrying out projects under government sponsorship are encouraged to express freely their findings and conclusions. Therefore, points of view or opinions do not necessarily represent official AoA, ACL, or DHHS policy."

Slide 2Welcome the group. Thank the site for hosting the presentation. Provide housekeeping, location of restrooms. Give an overview of the length of the presentation. Review sign-in sheet, evaluation survey and any other required data collectionProvide any other information as needed.

2

Take a

Deep Breath

Slide 3Take a Deep BreathWe are going to start today with a mindful, or slow, breathing exercise. This will help us to calm our mind so we can focus on the here and now. After you leave today, this breathing exercise can help in your day to day life by thinking more clearly by creating calmness in your thinking.Sit comfortably, with your eyes closed and your back straight, if you can. If not, its perfectly OK to be standing, lying down or any other position that you find comfortable.Start by paying attention to your breathing. Imagine that you have a balloon in your stomach. Every time you breathe in, the balloon inflates. Each time you breathe out, the air leaves the balloon. Your stomach rises with the in-breath, and falls with the out-breath. Breathe slowly: try to breathe in while counting to 5, and breathe out while counting to 5. Its the EXHALE or breathing out that really is the cleansing breath. Do this breathing for 6 10 cycles to feel the benefit.Thoughts will come into your mind, and thats okay, because thats just what the mind does. Simply notice those thoughts, but dont dwell on them. Bring your attention back to your breathing as soon as you can. Likewise, you can notice sounds, how your body feels, and emotions. Again, just bring your attention back to your breathing.Whenever you notice that your attention has drifted off and is becoming caught up in thoughts or feelings, simply note this, and then bring your attention back to your breathing. Remember to breathe deeply and evenly for 6 10 cycles, for the most benefit. How do you feel now?3

About you

Tell us your nameWho are you helping or giving care?Why are you here today?

Slide 4Now that we are a little more settled in after the breathing exercise, I would like to get to know you.Lets go around the room and please tell us about you your name, who are you helping and why you are here today.The purpose of the introductions is to establish a connection with the caregivers.Thank you for being here today. 4

What We Will CoverWhy your family member has these behaviorsWhat you can do to address these behaviorsHow you can handle your reaction

Slide 5What We Will CoverOver the next hour and one half, we will talk about Look at the behaviors your family member might be having and why these behaviors happen.Understand what the behavior means to your family member and talk about ways to change the behavior.Change your reaction to the behavior.

5

What is Dementia?

Slide 6What is Dementia?Lets start with talking about dementia. What have you heard about dementia?Facilitator ask questions and fill in gaps in the group discussion.There is a link between dementia and Alzheimers disease. Lets watch this video which will tell us and show us the impact of Alzheimers disease on a persons brain.As you want the video, pay attention to how the disease gets worse and how the disease causes changes in the brain and how these changes are tied to behavior.

6

Overview of Alzheimers Disease

Slide 7/8Overview of Alzheimers Disease Video clipAfter the video clip, engage in a brief discussion or answer questions.What did you notice happened to the brain? Suggested questions/summary statements: The video showed that the hippocampus area of the brain is damaged by Alzheimers disease and makes it harder to create new memories. You may see your family member ask the same question over and over or not remember what happened a few hours ago.

Alzheimer's disease may impact a persons emotions and feelings. You may see you sweet mother become angry and mean.

As the disease gets worse, a persons oldest memories are lost and you may see your family member forget your name or who you areTransition to next slide: There are many behaviors that we see with Alzheimers disease.

7

Overview of Alzheimers Disease

A person with Alzheimers can See or hear thingsGet lostHitWorryBe confusedRepeat questionsNot trust othersHave sleep problemsRefuse to take pills

Slide 9Alzheimers Can CauseWe dont know what causes Alzheimers disease. BUT we do know what Alzheimers disease creates in an individual.Alzheimers can cause a large range of behaviors. These behaviors may be new or get worse with Alzheimers. What other behaviors are missing? Not every person with Alzheimers will have all of these behaviors but these are the more common behaviors that caregivers tell us about.

9

All behavior has meaning

What is the person trying to say?What is the meaning of the behavior to the person?Possible meanings:Are they sad, angry or fearful?Are they uncomfortable or in pain?Are they sick?Are they frustrated or bored?

Slide 10All Behavior Has MeaningLets talk about behavior as a way for the person to tell us something. What is the meaning of the behavior to your family member?For a person with Alzheimers disease, they have really a hard time telling us what they feel, need and want as well as what we are saying to them. Give a brief summary of changes in communication. And/or provide a communication brochure/fact sheet for more information.What do you think might be some reasons a person is trying to tell you?All of these are great ideas and examples. Most of the time these reasons fall into the following four areas:-Emotional need-Physical need-Health problem-Problems doing a task10

Behaviors are generally NOT

done to annoy youdue to poor listeningdone on purpose

Slide 11Behaviors are Generally NOTSometimes it might be hard to remember that a behavior is a way for your family member to communicate with you. Its normal for our first reaction to believe that the behavior is -done on purpose (he has never trusted me to handle our money) -trying to be difficult (she knows that I need to get dinner on the table but she keeps asking me questions and trying to leave the front door) - poor listening (I told her 20 times that her cousin would come over after lunch)11

Sudden change in behaviorMajor change in memory or moodMore confusionIncrease in anger, hitting, and yellingSudden wetting the bed or not getting to the bathroom in timeFeverSeizure

Talk to your doctor immediately!

Slide 12Sudden and Unusual BehaviorSometimes a persons behavior will change quickly or come out of the blue. When this happens, check to see if there is a medical emergency. Some signs that need to be reviewed by a doctor immediately include: read some or all of the signs from the slide.It is always best to think that a sudden change in the behavior is because of an infection, really high blood sugar, or other medical emergency rather than think that it is a normal change with Alzheimers disease. Give an example.Be sure to tell them (doctor) about how your person is usually like.Describe baseline and how to articulate the individuals baseline to healthcare professionals.12

IDEA! A three step approach

Slide 13IDEA! a three step approachWe are going to use the word IDEA! whose letters represent a three step strategy as a way to help us remember how to respond when a behavior occurs and change the future behavior. Lets define each letter and step.The first step is to ID the behavior. That is, to identify the specifics of what is happening. IE: Dad is trying to leave the house; Mom is asking repeatedly the same question; dad is upset for no apparent reason. This is also an opportunity to focus on the details of the situation, rather than coming up with an immediate response to the behavior. The second step is to Explore the reasons behind the behavior, no matter how logical or illogical it may be. The point is to begin to try to understand the cause and its potential meaning for both, the person with dementia and us as caregivers. The third step is Adjust our response. Now that weve understood some of the meanings behind the behavior, during this step, we can now brainstorm some potential strategies to help manage the behavior and perhaps change the behavior in the future.

13

STEPSIDentify the behaviorBe specificExploreUnderstand the meaningUnderstand the causeAdjustBrainstormIDEA! A three step approach

Slide 13IDEA! a three step approachWe are going to use the word IDEA! whose letters represent a three step strategy as a way to help us remember how to respond when a behavior occurs and change the future behavior. Lets define each letter and step.The first step is to ID the behavior. That is, to identify the specifics of what is happening. IE: Dad is trying to leave the house; Mom is asking repeatedly the same question; dad is upset for no apparent reason. This is also an opportunity to focus on the details of the situation, rather than coming up with an immediate response to the behavior. The second step is to Explore the reasons behind the behavior, no matter how logical or illogical it may be. The point is to begin to try to understand the cause and its potential meaning for both, the person with dementia and us as caregivers. The third step is Adjust our response. Now that weve understood some of the meanings behind the behavior, during this step, we can now brainstorm some potential strategies to help manage the behavior and perhaps change the behavior in the future.

14

IDEA! a three step approach:

STEP 1IDentify the behavior. Can you describe the behavior?Do others see it the same way?Does the behavior bother your family member? You?

Slide 14Step 1During the first step of the IDEA! strategy, begin by looking at the situation from different angles. Start by asking questions, such as, what is the behavior? Focusing on the specifics of what is happening. If no specific word defines the behavior, consider simply describing the details of the situation. If necessary, consider someone elses perspective by asking if others see it the same way. You may also want to look into other aspects of the behavior, such as when and where does this usually happen. Finally, ask yourself whether this is something bothersome or pleasurable for you or other family members. Remember, not all behaviors are necessarily difficult and in fact, those that are considered pleasurable should be encouraged.

15

Explore why the behavior is occurring:What is the meaning to the person?What is she trying to say or to do?IDEA! a three step approach:

STEP 2

Slide 15Step 2In the second step, we Explore why the behavior is occurring. This is where we put on our detective-like hat and look for possible answers to questions like, what is he or she trying to say? And what could the specifics of the behavior mean to the person? For example, when the persons want to go home, what does the concept of home mean to the person? Remember, there is a meaning behind all behavior, and that meaning is not always easy to understand, but it helps to look at possibilities that it could be related to other health problems, or that simply the activity at hand is too hard or boring.It is also useful to look at the surroundings and assess whether it is too hot or cold; too loud or quiet; an unfamiliar place; too crowded; too cluttered; to dark or too bright. All of these situations have an effect on the person and sometimes serve as triggers for specific behaviors.Exploring some of these meanings together with others could be useful. Consider calling the Alzheimers Greater Los Angeles/ Alzheimers Associations Helpline and ask to speak with a Care Consultant. You may also join a support group where others experiences could prove useful in understanding the behavior. There are also information and videos available online that may help you in the discovery of these meanings. And of course, attending other classes can help as well.

16

IDEA! a three step approach:

STEP 3AdjustYou will be the one who needs to change.You can influence the behavior.You can adjust the environment.

Slide 16Step 3During the final step, you will Adjust your reaction to the behavior. It is important to understand that because of the disease and the persons difficulty with learning, they are not going to change. It is up to us as their family to meaningfully maintain a connection. When doing this, its important to treat the person with dignity and respect. Similarly, when responding, consider asking yourself whether this is a dignified way of responding to an adult. Sometimes, our response may put us in a confrontational situation between what is practical and what is ethical. Remember to always think about the person first and then respond accordingly, given that much of whats being experienced are as a result of Alzheimers disease and not necessarily persons choice.17

Putting IDEA! to workThink about:

What do you see happening?What may be causing the behavior?What does the behavior mean to the individual?How would you respond?

Slide 17Putting IDEA! to workTo help practice the IDEA! strategy, we are going to work in teams by creating groups of 3 or 4 people. During this section, we are going to watch video clips showing different common behaviors along with a typical or common response and ideas for a better responses.As a group, after each common response video, discuss what you see happening and how would each of you respond. Also, think about what may be causing the behavior and what those triggers could mean to both, the caregiver and the person with dementia. Finally, talk about what adjustments can be made to change or modify the situation.18

HallucinationsCommon ResponseCopyright 2014. The Regents of the University of California. All Rights Reserved. The project described was supported by Grant Number 1C1CMS330982 from the Department of Health and Human Services, Centers for Medicare & Medicaid Services. The contents of this publication are solely the responsibility of the authors and do not necessarily represent the official views of the U.S. Department of Health and Human Services or any of its agencies. This project was funded, in part, by the Archstone Foundation.

Slide 18Common Response to HallucinationsIn this first video, this person with dementia is experiencing hallucinations that is, she is seeing a man in her room.

19

HallucinationsCommon Response

Copyright 2014. The Regents of the University of California. All Rights Reserved. The project described was supported by Grant Number 1C1CMS330982 from the Department of Health and Human Services, Centers for Medicare & Medicaid Services. The contents of this publication are solely the responsibility of the authors and do not necessarily represent the official views of the U.S. Department of Health and Human Services or any of its agencies. This project was funded, in part, by the Archstone Foundation.

Slide 19Play Video20

Putting IDEA! to workHallucinationsAs a group, think about:What do you see happening?What may be causing the behavior?What does the behavior mean to the person?How would you respond?

Putting IDEA! to workHallucinationsIDentify the behavior:Mother runs out of the room thinking that there is a man in the room.Explore: What may be causing that behavior?This may be caused by shadows misinterpreted by the brain.She may also be fearful of others and need comfort and reassurance.Adjust: What can be done?I am going to remove objects casting shadows.I am going to listen and acknowledge her fear; offer something comfortable like a blanket or a hug.

A better responseHallucinations

Slide 22Better response to HallucinationsIn this next video clip, we are going to watch a better response when hallucinations may be affecting our family member.In summary, quick thing to do is to remove objects casting shadows, given that these are being misinterpreted by her brain as someone else in the room. We also noticed an emotional reaction, therefore, it may be necessary to listen and acknowledge her fear and offer something comfortable and soothing, like a blanket or a hug. 23

Common responseRefusing to take medication

Slide 23/24 Common response: Refusing to take medicationIn this video, we are going to see a family experiencing problems with giving medication.Lets begin watching a typical response from many people when in this situation.

24

Refusing to take medicationCommon response

Slide 24Show video clip25

Putting IDEA! to workRefusing to take medicationAs a group, think about:What do you see happening?What may be causing the behavior?What does the behavior mean to the person?How would you respond?

Putting IDEA! to workRefusing to take medication

IDentify the behavior:Grandmother refuses to take her pills.Explore: What may be causing that behavior?Both are frustrated. She has forgotten why she needs to take her medications.Adjust: What can be done?I am going to approach her calmly and patiently.I am going to show her the doctors note whom she has to please.I am going to suggest a fun activity afterwards.

Refusing to take medicationA better response

Slide 27 Refusing to take medication: Putting IDEA! to workLets now work structuring a response using the IDEA! strategy. The first step is to describe or Identify the behavior.In this scene, we saw the grandmother refusing to take her pills, thus causing frustration for both.Next, we are Explore what may be causing this behavior. In the scene we noticed that the grandmother seemed frustrated and had forgotten why she needed to take her medications. These two factors can explain why this task is difficult for the caregiver.In our third step: Adjust, we are going to try change or modify the two factors that is causing, or at least contributing to the behavior. What ideas did your group discuss?28

Refusing to take medicationA better response

Slide 28We are now going to watch a better response to the Refusing to take medication situation.In summary, one can use an authoritative figure, like a doctor, whom the person is more likely to please, as a way of getting the person to take her medication. In this case, we are going to show the doctors note.One last thing think to keep in mind is to consider making this less of a required activity and instead, connect it with something fun, like going out for a walk or go have some ice cream afterwards. This can help lessen their hesitation and may in fact increase the connection between this activity with something perhaps more pleasurable.29

IDEA! SummarySteps

IDentify the behavior:Be specificExplore: What may be causing that behavior?Understand the meaningUnderstand the causeAdjust: What can be done?Brainstorm

When you are overwhelmedTake a deep breath

Slide 31 Breathing ExerciseBefore we end our session, lets take a minute or two and concentrate on what weve learned. Once again we continue to practice our breathing exercise because no matter what happens, we always need to breathe. And it may be useful, in challenging moments, before and after reacting, to pause for a moment and breathe in and out. They may also help you assess whether the response is working or perhaps say or try something different.

IF TIME ALLOWS, FOLLOW UP DISCUSSION QUESTION AND POINTS.What else do you do when you feel overwhelmed?

Its okay to leave the room for a few minutes as long as your family member is safe.You can press the reset button and try again.You can breathe.You can use humor. Find a funny cartoon, joke or YouTube video.31

Video clips credit: UCLA Dementia Care Program Copyright 2014.The Regents of the University of California. All Rights Reserved. The project described was supported by Grant Number 1C1CMS330982 from the Department of Health and Human Services, Centers for Medicare & Medicaid Services. The contents of this publication are solely the responsibility of the authors and do not necessarily represent the official views of the U.S. Department of Health and Human Services or any of its agencies.This project was funded, in part, by theArchstoneFoundation.

CollaboratorsAlzheimers Greater Los AngelesAlzheimers Association, Northern California and Northern NevadaDr. Dolores Gallagher-Thompson, PhD, ABPP, Stanford University School of Medicine

Thank you to all of our collaborators32

alzgla.org24 Hour HelplineMany languages spoken

844.HELP.ALZ(844.435.7259)

Slide 32 We Are Here for YouAs always, at the Alzheimers Greater Los Angeles/ Alzheimers Association we are committed to help you navigate through your Alzheimers journey. If you want to connect one on one with a professional regularly, you may call and speak with one of our Care Consultants. They are able to assist with resources, referrals and information. If you prefer to join a group, Support Groups are also available at various places throughout our areas. And if you want to attend additional classes, Community Education classes are available at different locations in our communities as well. All you need to do to access these free services and more is to call our Helpline at (800) 272-3900. You may also visit our website alz.org for additional information and support.

33