dementia related behaviors - cecentral

8/28/2012

1

Dementia‐Related Behaviors:What Do We Know? What Can We Do?

Lisa P. Gwyther, MSW, LCSWAssociate Professor, Department of Psychiatry and Behavioral Sciences

Director, Duke Family Support ProgramEducation Director, Bryan Alzheimer’s Disease Research Center

Duke University Medical Center, Durham, [email protected]

June 4, 201229th 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.

Duke Family Support Program, June 2012

8/28/2012

2

What Do Families Say?

• She says we never see her or take her h b t danywhere…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.


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.


8/28/2012

3

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.”


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 deathhigher care costs, injury, and death

• Major contributor to problems of recruitment, retention, injuries, and burnout of direct care workers (Gitlin, et al., 2010)


8/28/2012

4

What Do We Know About Dementia‐Related Behaviors?

• Anxiety, suspiciousness, restless agitation areAnxiety, 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).



• 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.


8/28/2012

5


• Behaviors may be a response to sensory• Behaviors may be a response to sensory overload, fear, frustration, anticipated embarrassment or physical symptoms.

• Dementia‐related behaviors respond to changes in activity, routines, environment balancing rest andenvironment, balancing rest and stimulation and changes in communication from others.


Common Dementia‐Related Changes

• Disinhibition (40%)

• Delusions (40%)

• Apathy (70%)

• Agitation (60%)

• Aggression (20%)

• Hallucinations (15%)

• Sleep disruptions

• Anxiety (50%)

• Mood blunting/ lability (40%)


8/28/2012

6

Which Behaviors are Most Challenging for Families?

• Begging, repeated • Hitting, biting, gg g, paccusations

• Swearing, insulting, threatening

• Resistance to care

g, g,scratching, pinching

• Voiding in the wrong place

• Undressing,

• Shadowing, rummaging, wandering

unwanted touch or intimacy


FTD: Special Considerations

Th bl k t• The blank stare

• Apathy/lack of motivation

• Loss of empathy

• Excessive shopping• Excessive shopping


8/28/2012

7

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


“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


8/28/2012

8

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?


What is Agitation?

• Physical or verbal aggression• Physical or verbal aggression

• Combative or resistive to care

• Disruptive vocalizations

• Hyperactivity/RestlessnessHyperactivity/Restlessness

• Disinhibition


8/28/2012

9

Agitation Triggers

• Pain

• Fatigue• Fatigue

• Hunger/Thirst

• Dehydration

• Constipation

F ll Bl dd

• Caffeine/Alcohol

I ti• Full Bladder

• Drug Effects

• Incontinence

• Infection


Agitation Triggers

• Disinhibition

• Sensory Loss

• Disinhibition• Depression• Delusions• Hallucinations• Illusions

• Immobility• Dependency

• Misinterpretation• Lost Language


8/28/2012

10

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


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


8/28/2012

11

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


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.)


8/28/2012

12

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.


Catastrophic Reactions

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


8/28/2012

13

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.


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


8/28/2012

14

The Lived Experience of AD

“Please don’t correct me ...remember my feelings are intactremember, 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


Behavior Basics

• The person is trying as hard as s/he can. Reasoning pleading extracting promises orReasoning, 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.


8/28/2012

15

Behavior Basics

• Brain damage makes it difficult to start, plan, organize 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 aThe 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.


Communication is Key

• Verbal and non‐verbal

• Cueing, guiding, leading, reassuring

• Identity and social roles reminders

• Familiar predictable phrases

• Humor helps


8/28/2012

16

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


Talking Tips

• Words are not as important as a calm tone, pleasant expression, and non‐distractingpleasant 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.


8/28/2012

17

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 dfrustrated.

• Use positive statements rather than questions, – “It’s time to get dressed.”


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 timehappening – One step at a time.

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


8/28/2012

18

Effective, Evidence‐Based Approaches to Behaviors

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

• Staff training in communication skills and knowledge of dementia


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


8/28/2012

19

“There’s nothing that two scoops of ice cream won’t fix!”


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


8/28/2012

20

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


Reminders

• Avoid over‐ or under‐estimating what the person can doperson 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.


8/28/2012

21

Reminders

• Being reasonable, rational, and logical will just l t tescalate 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 workperson with dementia doesn t work.

• Tell the doctor what’s really going on and what works.


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


8/28/2012

22

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 or MODEL

9 Never CONDESCEND instead ENCOURAGE9. Never CONDESCEND, instead ENCOURAGE and PRAISE

10. Never FORCE, instead REINFORCE


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.


8/28/2012

23

Take‐Home Message

• Dementia‐related behaviors can be limited or i i i dminimized

• The carer has to do the changing

• Yes, it’s possible


You Catch On

“Let me tell you, we love you all, and we’re k l i lgonna 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


dementia related behaviors - cecentral

Documents