Hiding the Stranger in the Mirror Behaviours staff find challenging: Finding the causes and devising solutions Cameron J. Camp, Ph.D. Director of Research and Development Center for Applied Research in Dementia © 2012 Myers Research Institute All Rights Reserved

THE CRITICAL QUESTION: Why is this happening?

Breaking the Pattern The answer CANNOT be: “Because they have dementia.”

A person with memory problems is a normal person who happens to have memory problems. If we can circumvent the problems, it is a normal person who remains.

To understand what motivates a person, we must come to know the person. Always remember that it is a person who has problems with memory, and often our best means of combating the effects of dementia is to allow the person to re-emerge.

Know the “Person” * Interviewing The Person Where’s Jamie?

Know the “Person” Lesson Learned: A good lesson to be learned here is that it can be useful, when trying to discover why a person with dementia exhibits a particular behavior, to simply ask the person. The answer often is informative.

Know the “Person” * Why Can’t We Go To His Funeral?

Know the “Person” Lesson Learned: Just as it is important to interview an individual with dementia, it can be equally important to interview groups of persons with dementia. Again, the answer(s) often can be very useful.

Know the “Person” * The Evil Rock and the Good Rock

Know the “Person” Lesson Learned: It is important to know a person’s background or culture. In this case, finding that out and then taking an approach that respected the woman’s culture-based behaviors caused a “problem” to go away.

Know the “Person” * Sacred Rice

Know the “Person” Lesson Learned: Interventions must be translated into the culture of the person with dementia. This culture can be seen in the practices of nations, families, or within individuals. Intervention must be personalized for the person with dementia.

Know the “Person” * Focus On Abilities

PRESERVED ABILITIES * Habits * Location learning/ Environmental Cueing * Motor learning * Classical & Operant Condition * Repetition priming The ability to improve performance after initial exposure to information

Sitting

Using a walker

Know the “Person” * Focus On Abilities Reading

Lesson Learned: The ability to read is usually still retained even when a person has dementia. It is such a well- practiced habit that we don’t even think about it while we do it, and this habit may still be available in advanced stages of dementia. Never assume that persons cannot read just because they have dementia.

Know the “Person” * Crayons And Kinkeeping

Know the “Person” Lesson Learned: Test for the ability to read. Do not assume that the person with dementia cannot read until this has been assessed. If someone can read, it opens up a great number of possibilities, including ways to have better visits and more meaningful relationships.

THE TAI CHI DEFENSE This involves using the symptoms of dementia as a means of dealing effectively with problematic behaviors and/or to improve quality of life in persons with dementia.

THE TAI CHI DEFENSE * Umbrella Drinks

THE TAI CHI DEFENSE Lesson Learned: If memory loss is a defining feature of dementia, consider how not remembering something can be useful on occasion. Allow a person with dementia to have their own reality, especially if that reality is different and better than the one you see them in. The purpose of life is to enjoy it.

THE TAI CHI DEFENSE * Walking the Dog

THE TAI CHI DEFENSE Lesson Learned: By giving persons with dementia a socially appropriate role to do while they are exhibiting “problematic” behaviors, what might be seen as a negative behavior (frequent walking) can be redirected into a positive outcome

LIVING with Dementia * Maintaining Contact with the Community

LIVING with Dementia * Giving Back and Paying Forward

LIVING with Dementia * Creating Supportive Communities

GATHERING THE EVIDENCE * The Usual Suspects

REPETITIVE QUESTIONS Why is this happening?

USING THE FORMULA * Start With The Physical

Sugar In The Morning, Sugar in the Evening

Sugar In The Morning, Sugar in the Evening Lesson Learned: Do not assume that a problematic behavior is “just another symptom of dementia.” It’s important to know the physical ailments and conditions associated with a person’s age and background. Check for these conditions first.

ENGAGE: OPTIMAL STIMULATION The Magic Pill

BUSY WORK

BUSY WORK Lesson Learned: Do not give someone a task just to keep them busy. There should be some purpose in the task. ALWAYS remember this – if it would bore you, it probably would bore them; if you would find it interesting, they probably would find it interesting.

GYPSIE ROSE KATZENBAUM Why is this happening?

GYPSIE ROSE KATZENBAUM Lesson Learned: A lack of stimulation and engagement can lead to disruptive behaviors, such as attention seeking. Providing meaningful activity during the time frames when disruptive behaviors have been taking place is a way to reduce the likelihood of stripping or other attention- seeking behaviors.

WAY TOO MANY SHRIMP

WAY TOO MANY SHRIMP Lesson Learned: Too much noise, too many choices, and too much stimulation can overwhelm persons with dementia. This can lead to attempts to leave – a flight response. Reducing noise levels, making choices easier and making the situation calmer and less demanding can enable persons with dementia take part in activities more easily.

THE HUSSY ACROSS THE STREET

THE HUSSY ACROSS THE STREET Lesson Learned: Activities can be used to address challenging behaviors. Storing memories in external sites such as in memory books not only aids reminiscence, but also can be used to prevent arguments about what has or has not happened.

Who’s Got The Problem?

That Would Be Cheating

That Would Be Cheating Lesson Learned: Challenges in dementia care can arise because of a lack of education or understanding on the part of caregivers. In this case, the “fix” to the problem is educating caregivers, and interventions may involve changing beliefs or attitudes.

TOO TIRED TO EVEN THINK

TOO TIRED TO EVEN THINK Lesson Learned. It is critical for caregivers to care for themselves. This means taking breaks, having a life that does not always include the person you are caring for, staying fit and eating well, and receiving social support. This makes you a better caregiver, and improves quality of life for you and for your loved one.

TWEAKING THE PHYSICAL ENVIRONMENT

Have I Taken My Pills Yet?

Have I Taken My Pills Yet? XMorning Pills ___Afternoon Pills ___Evening Pills Lesson Learned: Persons with dementia can learn what has and has not taken place if we create externally stored schedules of events, help them track what has happened, and give them practice retrieving this information.

Tweaking The Social Environment

Stop and Smell The Plastic Roses

Stop and Smell The Plastic Roses Lesson Learned: It is important to see the world through the eyes of the person with dementia and to hear with their ears. This woman was hearing “cut” and “hurt.” When those words were changed to “massage” and “manicure,” she no longer was afraid. Also, giving something for the person to hold and to capture their attention is a good way to enable personal care to be given without a struggle.

NEW LEARNING: It Ain’t Necessarily So

CLASSICAL CONDITIONING: Don’t Sit Under The Apple Tree

Don’t Sit Under The Apple Tree Lesson Learned: Through classical conditioning, music (or other sounds or images or events) can be associated with activities, persons, comings and goings.

Give Me That Phone

Lesson Learned: When persons with dementia need information or reassurance, a message addressing their needs can be written down and they can be trained to retrieve this information or reassurance for themselves. If they have mobility problems, the message can be attached to a walker or wheelchair or cane. If they cannot see or read, the message can be stored in an auditory form. An example of this is a “talking picture frame” that lets you record a message in your own voice on a picture frame which can then be played by the person with dementia. They key is to focus on abilities that remain and use these as the bases for interventions.

LEARNING YOUR A _ B _ C’s

Forever a Sailor

Forever a Sailor Lesson Learned: What is “triggering” the behavior? If we change what precedes and sets off a behavior, we can change the behavior. If we liked an old behavior and it has changed, see if something new has begun to precede the behavior. If so, replace it with what used to precede the behavior.

Bribery versus Reinforcement

Lesson Learned: Reinforcement and bribery are two different things. Reinforcement supports positive behaviors while bribery supports negative behaviors.

The Social Contract

Rules to Live By

Lesson Learned: Contingency contracting can be conducted between individuals and a group, or among members of a group. Externally storing the rules and practicing procedures for recalling the rules from the external source enables memory deficits among members to be circumvented. Also, members will be better with this procedure with practice. In addition, practicing the behaviors of showing respect and dignity towards others and apologizing for inappropriate behaviors allow persons with dementia to learn to demonstrate these behaviors, at least within the environment where the rules are enforced.

Spaced Retrieval

Going to School

Lesson Learned: Spaced retrieval can be effective for working with repetitive questioning. Persons with dementia also can begin to realize that you keep asking the question, so be prepared to let them know why you are doing it. When a person with dementia has information (like where they are going), they will use it.

Where Is My Husband?

My husband isn't here because he doesn't know that I am here. This makes no sense. My husband would move heaven and earth to find me. My husband isn't here because he is not well and I need to go to him. This makes no sense. My children would bring me to my husband if he needed me. My husband isn't here because he passed away two years ago. Someday we will be together again in heaven where he is waiting for me now.

Lesson Learned: Persons with dementia may not remember that loved ones have died, and worry about this. Providing information about the passing of loved ones can provide relief as well as a way to let them work through their need to grieve. Crying and grieving for a loved one is a natural, human reaction, and grief can lesson over time if persons with memory impairments are given the chance to work through their grief.

You Solve The Case

A woman with advanced dementia was residing in a nursing home. She only spoke Russian, and staff only spoke English. When staff would try to take away her food tray at meals, she would throw orange juice at them. She was very accurate. Make her stop. Gather the evidence: Use the formula: CLUE: What would make you angry at a waiter in a restaurant ?

An older woman with dementia also was hard of hearing. She was taking part in a group exercise program. She has a personal aide, who would try to tell her what the group exercise leader is asking the group to do. The older woman would shout out “What?” “What did you say?” This was very disruptive for the group. What should the aide do? Gather the evidence: Use the formula: CLUE: The older woman’s vision is fine.

Thank You.