Dementia Related Behaviors: What Do We Know? What Can We Do? Lisa P. - - PDF document

8/28/2012 1

Dementia‐Related Behaviors:

What Do We Know? What Can We Do?

Lisa P. Gwyther, MSW, LCSW

Associate Professor, Department of Psychiatry and Behavioral Sciences Director, Duke Family Support Program Education Director, Bryan Alzheimer’s Disease Research Center Duke University Medical Center, Durham, NC Lisa.Gwyther@duke.edu

June 4, 2012 29th Annual Summer Series on Aging Lexington, KY

What Do Families Say?

• She never would have done that before
• She never would have done that before.
• We need to do something – he’s more than I

can handle.

• I still care about our relationship – I don’t

want to fight like this. g

• He seems unaware of how his behavior affects

us.

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What Do Families Say?

• She says we never see her or take her

h b t d anywhere…but we do.

• He’s always at his worst when we get home

from work.

• How can she be so nice to strangers and so

mean to us? mean to us?

• He won’t give up driving.

Duke Family Support Program, June 2012

What Do Families Ask?

What can I do when?

• She accuses me of being unfaithful.
• He says we stole his money, car, etc.
• She won’t let me help, but she won’t bathe.
• He tries to go home or to work at 2a.m.
• She curses in front of the grandchildren.
• He asks what I’ve done to his real wife.

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The Hardest Parts

• “I can’t NOT take it personally!”

p y

• “It’s like a box of chocolates – you never know

what you will find when you bite in.”

• “I have never lied to my mother.”
• “Couldn’t she remember the good stuff?”
• “It only natural to try to explain rationally to a

husband of 50 years.”

Duke Family Support Program, June 2012

Why Focus on Behavior?

• Major cause of suffering for people with

dementia and their families

• Common and most challenging aspect of care
• Major predictor of negative mental and

physical health consequences of family care

• Major predictor of increased care time,

nursing home admission, hospitalization, higher care costs injury and death higher care costs, injury, and death

• Major contributor to problems of recruitment,

retention, injuries, and burnout of direct care workers (Gitlin, et al., 2010)

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What Do We Know About Dementia‐Related Behaviors?

• Anxiety, suspiciousness, restless agitation are

Anxiety, suspiciousness, restless agitation are common symptoms of brain disorders despite best care (Goforth & Gwyther, 2009).

• Non‐drug approaches are recommended first

based on evidence and expert consensus (Lyketsos et al, 2006).

• Rejection or resistance to care in nursing

homes is associated with delirium, delusions, depression or inadequately treated pain (Ishii, 2010).

Duke Family Support Program, June 2012

What Do We Know About Dementia‐Related Behaviors?

• Behaviors communicate unmet need and

reduced capacity to cope with stressful situations (van der Ploeg, BMC, 2010).

• Dementia‐related behaviors may be

inconsistent daily or even hourly.

• Not all behaviors respond to medicine: Side

effects of medication create additional problems.

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What Do We Know About Dementia‐Related Behaviors?

• Behaviors may be a response to sensory
• Behaviors may be a response to sensory
• verload, fear, frustration, anticipated

embarrassment or physical symptoms.

• Dementia‐related behaviors respond to

changes in activity, routines, environment balancing rest and environment, balancing rest and stimulation and changes in communication from others.

Duke Family Support Program, June 2012

Common Dementia‐Related Changes

• Disinhibition (40%)
• Delusions (40%)
• Apathy (70%)
• Agitation (60%)
• Aggression (20%)
• Hallucinations (15%)
• Sleep disruptions
• Anxiety (50%)
• Mood blunting/

lability (40%)

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Which Behaviors are Most Challenging for Families?

• Begging, repeated
• Hitting, biting,

gg g, p accusations

• Swearing, insulting,

threatening

• Resistance to care

g, g, scratching, pinching

• Voiding in the wrong

place

• Undressing,
• Shadowing,

rummaging, wandering unwanted touch or intimacy

Duke Family Support Program, June 2012

FTD: Special Considerations

Th bl k t

• The blank stare
• Apathy/lack of

motivation

• Loss of empathy
• Excessive shopping
• Excessive shopping

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FTD: Special Considerations

• Can’t resist impulses to manipulate or operate
• Ritualistic, compulsive perseveration without

purpose

• Impulsive disinhibition with no insight about

harm to others

• Hyper orality
• Hyper‐orality

Duke Family Support Program, June 2012

“It’s not that she can’t dress herself – it’s that she won’t let me help, even when she dresses for church in three shirts, a hat, and panties.” panties.

‐ Daughter of a woman with AD

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Is the Behavior a Problem?

• Causing distress to person or

i ? caregiver?

• Interferes with function or

increases disability?

• Impedes delivery of

necessary care?

• Limits capacity to stay in
• Limits capacity to stay in

preferred setting?

• Safety risk to self or others?

Duke Family Support Program, June 2012

What is Agitation?

• Physical or verbal aggression
• Physical or verbal aggression
• Combative or resistive to

care

• Disruptive vocalizations
• Hyperactivity/Restlessness

Hyperactivity/Restlessness

• Disinhibition

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Agitation Triggers

• Pain
• Fatigue
• Fatigue
• Hunger/Thirst
• Dehydration
• Constipation

F ll Bl dd

• Caffeine/Alcohol

I ti

• Full Bladder
• Drug Effects
• Incontinence
• Infection

Duke Family Support Program, June 2012

Agitation Triggers

• Disinhibition
• Sensory Loss
• Disinhibition
• Depression
• Delusions
• Hallucinations
• Illusions
• Immobility
• Dependency
• Misinterpretation
• Lost Language

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Agitation: What to Do

• Slow down, soothe, structure
• Encourage, praise, be gracious and polite
• Add visual cues, adjust light
• Back off and ask permission
• Guided choices
• Reassure repeatedly

Duke Family Support Program, June 2012

Agitation: What to Do

• Ask for adult‐like help or “company”
• Offer security object, rest and privacy

after an upset

• Limit caffeine or alcohol
• Comfort rituals

M dif f i i l i

• Modify favorite social, creative or sports

activities

• Avoid scary TV shows

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Agitation: What Not to Do

Do not:

• Take offense
• Raise voice
• Corner, crowd, restrain
• Rush, criticize, ignore
• Confront, argue, explain, teach
• Show alarm, make sudden movement

Duke Family Support Program, June 2012

Agitation: Helpful Talk

• May I help you?
• Do you have time to help me?
• You are safe here.
• Everything is squared away.
• I will get right to it.
• Thanks for letting me know.
• I apologize. (Even if you didn’t do it.)

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Agitation: Helpful Talk

• I am sorry you are upset.
• I will stay until you feel better.
• I know this is hard – I wish things were easier

for us.

Duke Family Support Program, June 2012

Catastrophic Reactions

There is nothing so small that it cannot be blown out of proportion.

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What is she thinking?

• I am overwhelmed.
• How dare you question me!
• I make sense – you and events don’t.

y

• Your reasoning wears me out.
• I must defend my turf.

Duke Family Support Program, June 2012

What is she thinking?

• It’s gone and you are here
• It’s not a lie – I am filling in memory holes

with something reasonable

• If I could remember, I wouldn’t ask or repeat

questions

• Waiting for me to do it myself may just
• Waiting for me to do it myself may just

frustrate both of us

• Give me a clue

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The Lived Experience of AD

“Please don’t correct me ... remember my feelings are intact remember, my feelings are intact and I get hurt easily… I may say something that is real to me but may not be factual. I am not lying. D ’t it ’t l thi ” Don’t argue – it won’t solve anything.”

Canadian Early Stage Support Group

Duke Family Support Program, June 2012

Behavior Basics

• The person is trying as hard as s/he can.

Reasoning pleading extracting promises or Reasoning, pleading, extracting promises or punishing won’t help.

• People forget what is acceptable public

behavior and lose impulse control – short fuse. R i t b t id

• Resistance may be a way to avoid

embarrassment at being asked to do something too difficult or too childish.

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Behavior Basics

• Brain damage makes it difficult to start, plan,
• rganize or sequence a task.

g q

• Overwhelmed fearful responses (catastrophic

reactions) to a confusing world may be beyond her capacity to understand. She doesn’t know why she is angry, suspicious or sad.

• The person sees you as security or safety in a

The person sees you as security or safety in a shrinking world – He will respond in kind if you are angry, rushed or upset, (Coste) yet he may not let you out of his sight.

Duke Family Support Program, June 2012

Communication is Key

• Verbal and non‐verbal
• Cueing, guiding, leading, reassuring
• Identity and social roles

reminders

• Familiar predictable

phrases

• Humor helps

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Talking Tips

Getting her attention: E t t

• Eye contact
• Approach slowly from the side or front or

crouch down at her level

• Call her by preferred name in a clear adult

tone

• Offer your hand, palm up
• Listen, talk, but do not feel compelled to talk

constantly

Duke Family Support Program, June 2012

Talking Tips

• Words are not as important as a calm tone,

pleasant expression, and non‐distracting pleasant expression, and non distracting environments (e.g., turn off the TV).

• If you are called by another family member’s

name, just answer.

• Ask questions if you are unsure of her
• meaning. Remember she may say one thing

but mean another. Guess and ask her if you are on the right track. Help her find a word or thought to fill in the blanks.

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Talking Tips

• Routine, Ritual, Repeat

U l i lifi d h (b t d t

• Use slow, simplified speech (but do not

patronize). Allow more time for the person to respond.

• Do not test or ask questions like, “Remember

me?” – She will be angry, embarrassed, and f t t d frustrated.

• Use positive statements rather than questions,

– “It’s time to get dressed.”

Duke Family Support Program, June 2012

Talking Tips

• Do not offer too many choices or choices that

are unacceptable to you.

• Explain directly what you will be doing/what is

happening One step at a time happening – One step at a time.

• Use appropriate, respectful humor. Make fun
• f yourself.

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Effective, Evidence‐Based Approaches to Behaviors

• Psychoeducation/problem‐solving active skill

Psychoeducation/problem solving, active skill building individually or in groups

• Staff training in communication skills and

knowledge of dementia

Duke Family Support Program, June 2012

Outcomes of Non‐Drug Approaches

↑ Mobilization of community and secondary family support ↑ Effectiveness of care and coping ↑ Satisfaction with preferred level of involvement ↓ Negative health and mental health ↓ Negative health and mental health consequences of care ↓ Family conflict

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“There’s nothing that two scoops

• f ice cream won’t fix!”

Duke Family Support Program, June 2012

Safety Basics

• Safe Return/Medic Alert Registration
• Medication, OTCs, Toxins
• Falls prevention
• Golden/Silver Alerts
• Guns, power tools, kitchen

, p ,

• Monitoring: Low and high tech

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When Danger is Possible

• Emergency plan
• Remove weapons, tools, other people
• Move back or out
• Call for help or 911
• Don’t remind or blame after

Duke Family Support Program, June 2012

Reminders

• Avoid over‐ or under‐estimating what the

person can do person can do.

• Be flexible and adjust timing based on energy.
• Do not change the diagnosis when she has

moments of lucidity or insight.

• When you have dementia, thinking takes more

energy.

• Pay attention to comfort, retained strengths,

and opportunities to pamper.

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Reminders

• Being reasonable, rational, and logical will just

l t t escalate arguments.

• People with dementia do not need to be

grounded in reality every minute (Tomlin).

• Making agreements or promises with the

person with dementia doesn’t work person with dementia doesn t work.

• Tell the doctor what’s really going on and

what works.

Duke Family Support Program, June 2012

The Ten Absolutes

• 1. Never ARGUE, instead AGREE
• 2. Never REASON, instead DIVERT
• 3. Never SHAME, instead DISTRACT
• 4. Never LECTURE, instead REASSURE

,

• 5. Never say “REMEMBER,” instead REMINISCE

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The Ten Absolutes

• 6. Never say “I TOLD YOU,” instead REPEAT
• 7. Never say “YOU CAN’T,” instead say “DO

WHAT YOU CAN”

• 8. Never COMMAND or DEMAND, instead ASK
• r MODEL

9 Never CONDESCEND instead ENCOURAGE

• 9. Never CONDESCEND, instead ENCOURAGE

and PRAISE

• 10. Never FORCE, instead REINFORCE

Duke Family Support Program, June 2012

What Do Families Ask?

What can I do when?

• She accuses me of being unfaithful.
• He says we stole his money, car, etc.
• She won’t let me help, but she won’t bathe.
• He tries to go home or to work at 2a.m.
• She curses in front of the grandchildren.
• He asks what I’ve done to his real wife.

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Take‐Home Message

• Dementia‐related behaviors can be limited or

i i i d minimized

• The carer has to do the changing
• Yes, it’s possible

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You Catch On

“Let me tell you, we love you all, and we’re k l i l gonna keep on loving you as long as we can… What’s good about you all is you catch on, you catch on, you catch on and you know it’s not going to be perfect” Jean Walker in her 90s Four years before her death with Alzheimer’s

Duke Family Support Program, June 2012