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Caring for the

Caregiver:

Tips to Help You and

Your Clients’ Loved

Ones


Why Do We Care About Care

Partners?

- Care partnering is very hard work!

- The emotional state of care partners affects the person being cared for

- Care partners are just as important as the person with brain change!


Beliefs:

- People living with brain change are doing the

best they can

- Partners are challenged when learning how

to dance with their person

- We play a key role in making life worth living

- What we choose to do matters for all

- We must be willing to change ourselves

before helping others change

- We must be willing to stop and back off and

try again, if it is not working

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Quiz Time!

- What do we know?

- What do we think we know?

- What don’t we know?

- What surprised us most?

- What can we do about it?


Question #1

Dementia and Alzheimers are two

different words for the same condition

a. True

b. False

c. I don’t know


Question #2

What is dementia?

a. Problems with memory

b. Another word for Alzheimers

c. Something all older people get

d. Another word for a failing brain

e. I don’t know

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Question #3

How long do people live when they get

dementia?

a. Not long, 1-3 years

b. About 3-5 years

c. Anywhere from 6 months to 30 years

d. About 10-15 years

e. I have no idea


Question #4

What is the first change with dementia?

a. The brain begins to shrink

b. The chemistry of the brain changes

c. The person’s personality changes

d. The person’s behavior changes

e. I don’t know


Question #5

What parts of your brain will change if

you get dementia?

a. Memory and language centers die

b. Thinking and behavior centers die

c. All areas have some changes at about

the same time

d. All areas have some changes at

different times

e. I really don’t know

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Question #6

About how many types, forms, or

causes of dementia are there?

a. 2-3

b. 5-10

c. 20-40

d. Over 100

e. I have no idea


Question #7

About what percentage of people with

Parkinsons get some form of dementia?

a. About 40-50%

b. About 75-80%

c. About 10-15%

d. About 25%

e. I don’t know


Question #8

What type of dementia is most common

among people who have Parkinsons?

a. Probably FTD

b. Probably vascular dementia

c. Probably Alzheimers dementia

d. Probably Lewy body disease

e. No one knows

f. I don’t know

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Question #9

What is an effective treatment for people with Parkinsons and dementia?

a. How we respond, the settings we create, and the opportunities to continue to life with support that are provided

b. There are pills people can take to slow the disease down

c. There is nothing that really helps

d. Exercise and eating right can keep it from getting worse

e. I don’t know


Question #10Which message would you prefer if you had

dementia?

a. You seem incompetent, let me help you

b. Hey there, is there something I can offer

to make things better?

c. There is clearly something wrong with

you and I don’t know what to do

d. You are scaring me and I want you out of

here

e. There is clearly something wrong with

you and I am going to call the

authorities for help


So, What is Dementia?

- It is NOT part of normal aging! It is a

disease!

- It is more than just forgetfulness, which is

part of normal aging

- It makes independent life impossible,

eventually

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Dementia Alzheimers Memory Problems


About 90-95% of the general public think



BETTER ANSWER:


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BEST ANSWER:



Having dementia

does not equal and is more

than JUST Alzheimers

does not equal and is more

than JUST Memory Problems


How Does it Start?

• Chemical changes happen first

• Then structural changes happen

• Then it spreads OR it might just stay

steady for a while

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How Common are all forms

of Dementia?

The risk goes up

dramatically with

increasing age

America is aging!

Various dementias will

increase by 200-300%

over the next 30 years

without medical advances

and life style changes

0

10

20

30

40

50

60

Percent with some degree &

form of dementia

<60

at 60

>85


Cognitive Changes With Aging:

Normal changes: More forgetful and slower to learn

MCI: Mild Cognitive Impairment: Typically one area

such as immediate recall, word finding, or complex problem

solving, ½ of these folks will develop dementia in 5 years

Dementia: Chronic thinking problems in > 2 areas

Delirium: Rapid changes in thinking and alertness, seek

medical help immediately!

Depression: Chronic unless treated, poor quality of life, “I

don’t know” or “I just can’t” responses, no pleasure, can look

like agitation and confusion


The person’s brain is dying

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Normal

Brain

Alzheimers Brain

Used with permission from Alzheimers:The Broken Brain, 1999 University of Alabama


Learning and

Memory

Center:

Hippocampus:

BIG CHANGE


Understanding Language – BIG CHANGE

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Hearing Sound – Not Changed


Sensory Strip

Motor Strip

White Matter

Connections

BIG CHANGES

Formal Speech

and Language

Center

HUGE CHANGES

Automatic Speech

Rhythm – Music

Expletives

PRESERVED


Executive

Control

Center:

Emotions

Behavior

Judgment

Reasoning

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Vision Center – BIG CHANGES


For all that is lost,

some remains!

• 1/3 of brain remains

• Know what still works

• Know how we support in areas of loss

used with permission from Alzheimers:The Broken Brain, 1999

University of Alabama


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How to Give Feedback and

Help as a Coach:


What is a Coach?

-Supports and encourages

-Helps others learn something new

-Helps others gain skills

-Helps others practice and drill on the skills

-Helps others integrate their skills and

reinforces use until they become ‘automatic’

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Option 1:

Focus only on what is wrong or not working:

Say:

-“No”

-“Don’t”

-“That’s not right”

-“You missed”

Do:

-Head shakes

-Sad face

-Grimace


Option 2:

Focus on positive strokes only:

Say:

-“Good”

-“That’s it”

-“Great”

Do:

-Nods

-Smiles

-Claps


Option 3:

Ignore the person:

Say:

-Nothing

Do:

-Do other things

-Pay no attention

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Option 4:

Take over and do it yourself:

Say:

-“Let me do it”

-“You don’t know what you are doing… here,

let me do it”

Do:

-Take it out of the person’s hand

-Have them sit down and watch


Option 5:

- Be specific and positive:

Say:

-Give step by step cues

-“Yes”

-Reinforce what was right

Do:

-Show how

-Demonstrate


A Good Coach Uses

Learning Cycles:- Do something

- Share what happened and what didn’t

happen

- Think about and consider why?

- Connect this up to what happened and other

situations

- Get a commitment to try something

- Do it again with the change in place

- Offer supportive feedback

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Before Coaching:

-Be in control of you

-Decide if this discussion is ‘worth it’

- Pick your place and time for the discussion

- Get connected to the individual using the

Positive Physical Approach


Five Steps of Coaching for

Change:1. Identify there is a problem: be objective

-“I noticed… “

2. Ask for information and listen

-“Tell me about it….” or “Tell me more…”

3. Ask for help to figure out a solution that will

work: listen, then ask more and help get real

-“What ideas do you have about how to….”

4. Agree on what to do next: assignments, times

5. Check in and provide feedback


To Offer Feedback:

- Connect to the partner

- Ask the partner to observe with a goal in mind

- Do something with the person

- Seek the care partner’s perspective on progress

- Reflect what you think you heard (+, 0, -)

- Explore for more: -Ask the partner for two things that seemed to go well for their partner-Ask for one thing they would like to see go differently or better for their partner

- Drill with the person, continuing to seek input from the care partner

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Consider Personality Traits:

Who are you?

- Introvert - Extrovert

- Lots of Details - Big Picture Only

- Logical - Emotional

- Planning Ahead - Being in the Moment

Who is the care partner you are trying to help?


Introvert - Extrovert

Introvert = Controllers

Likes to be alone

Likes to think it out

Likes personal space

Needs alone time

Private

Will focus on the negative – mistakes

Won’t notice what went well

Extrovert = Connectors

Think out loud

Talk it out

Seek out people

Share a lot

Not good with boundaries

Will focus on what was good – great!

Will not notice what could be worked on!


Second: How Do You…

- Like to get information

- Like to do things

- Decide whether to do something

- Approach an unfamiliar task

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Details – Big Picture

Details

Needs to know how

Specifics of what to do

Wants detailed info to do it ‘right’

Likes doing the familiar and routine

Likes a check list and follows it

Likes to do it

Big Picture

Needs to know why

Likes to ‘fly by the seat…’

Likes to hear the big plan

Likes to try out new and different ways of doing things

Likes to experiment

Likes to talk it out first


Third: What Makes ‘Sense’?

- How do you ‘judge’ things?

- How do you decide if things are ‘OK’

- What matters most to you?

- What drives your behavior and actions?


Logical - Emotional

Logical = Think

Head First

Fair

Reasonable

Rational

Likes to discuss differences of opinion

How other people ’behave’

Emotional = Feel

Heart First

Nice

Kind

Empathetic

Prefers to avoid disagreements

How other people ‘feel’

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Fourth: How Do You…

- Use time

- Feel about time – the future versus now

- Plan ahead versus like surprises

- Feel about knowing what is expected

- Feel about ‘deadlines’

- Feel about making decisions


Planning Ahead – In the

Moment

Planning Ahead

Aware of the future

Sets priorities - plans

Likes routines

Likes a schedule

Likes to do things as planned

Decide and move on!

Needs to be in control

In the Moment

Being flexible

Go with now issues

Not forward thinking

Running late

Putting ‘other’ things off

Consider options….

Go with the flow


Some ‘stuff’ we think/feel

people do on purpose

is really just ‘who’ they are

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Which Personality Traits are

Better?- There is no better

- Just different…

- Just ranges…

- Know your self

- Know your person

- Know the Care Partner

- Support each for who they are!


How Can We Become Better

Communicators?

Let go of the past to be in the moment

Go with their flow

Be willing to try something new

Be willing to learn something different

Be willing to see it through another’s eyes

Be willing to fail and try again


INTENT

I'm sorry I was trying

to help

EMOTION

I'm sorry I made you angry

I’m sorry I disappointed

you

INTELLECTUAL CAPACITY

I'm sorry, I had no right to

make you feel that way

THAT HAPPENED

I'm sorry, it should NOT

have happened

THIS IS HARD

I'm sorry, this is hard, I

hate it for you

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Communication Strategies:

1. This or That?

2. Tell Me More About It

3. Show Me How You Use It


To Communicate

When They’re Distressed:

First – Connect Emotionally

Then - Use Supportive Communication

Finally - Move Together to a New Location,

Activity, or Conversation


To Connect Emotionally:

- Send visual signal of connection:

-Look concerned

-Send a verbal signal of connection:

-Use the right tone of voice

- Send a physical signal of connection:

-Give a light squeeze or sandwich the hand

-Offer a open palm on shoulder or back

-Offer a hug if the person is seeking more

contact

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Then, Use Supportive

Communication:• Repeat a few of their words, with a question

• Listen!

• Offer empathy:

•“Sounds like…”

•“Seems like…”

•“Looks like…”

• Go slow

• Avoid confrontational questions

• Use just a few words

• Validate their emotions


Be a Detective, Not a Judge!

Try to figure out what is being communicated:

•Words

•Thoughts

•Actions

•Needs

•Beliefs

Don’t assume or presume

Don’t discount the message because of how it

is delivered


For All Communication:

If what you are trying is not working:

- Stop!

- Back off

- Think it through, then:

- Re-approach

- Try something slightly different

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The content contained in this presentation is strictly for informational purposes. Therefore, if you wish to

apply concepts or ideas contained from this presentation you are taking full responsibility for your

actions. Neither the creators, nor the copyright holder shall in any event be held liable to any party for

any direct, indirect, implied, punitive, special, incidental or other consequential damages arising directly

or indirectly from any use of this material, which is provided as is, and without warranties.

Any links are for information purposes only and are not warranted for content, accuracy or any other

implied or explicit purpose.

This presentation is copyrighted by Positive Approach to Care and is protected under the US Copyright

Act of 1976 and all other applicable international, federal, state and local laws, with ALL rights reserved.

No part of this may be copied, or changed in any format, sold, or used in any way other than what is

outlined within this under any circumstances without express permission from Positive Approach to Care.

Copyright 2017, All Rights Reserved

Teepa Snow and Positive Approach to Care

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