Savvy Strategies for Caregivers with Loved Ones Living with

DementiaKen Hepburn, PhD

Nell Hodgson Woodruff School of NursingEmory Alzheimer’s Disease Research Center

Atlanta Regional Geriatric Center

Prelude: Our Expectations.

What is the Norm?

Here we all are.

Ask Yourself:

How did that happen?

What implications does it have?

To show up in this room, at this time: Judgment Reason Planning Organization decision-making Memory abstract thought (time)

To take part in the session: Reasoning Language Attention judgment Sophisticated social/behavioral skills

Complex Abilities

Our unimpaired brain provides the deep structures for:

• our functioning in the world • our social contract and • our social interactions

• And we seldom, if ever, think about this; • it’s a given in our lives

Alzheimer’s Changes Everything

Someone caring for a person with Alzheimer’s or another dementia

cannot rely on those deep structures

A Dis-Integration is Taking Place

A Few Facts

What is Dementia?

A condition of global deterioration of memory and cognition that impairs

thought and social functioning.

A progressive eroding of the Brain’s ability to integrate information so we can use it

effectively.

• Losing keys; misplacing glasses; forgetting names; longer to learn new things– A slowing down, but can still count on the brain

• Serious errors in complex familiar tasks• Unusual behavior in unfamiliar situations• Serious misjudgments• Persistent short-term memory problems• Not recognizing familiar people

– The brain starts to let us down and can’t be counted on

Normal Aging

Dementia

Is Dementia a Normal Part of Aging?

Facts about Dementing Diseases• 5.2 Million Americans affected• Age-associated• Generally of long duration• Generally community-living until end stages• Almost all are progressive and irreversible

• Not Equally Distributed More women than men (survival) Higher rates among African Americans and Hispanics??

Facts about Dementing Diseases• Alzheimer’s Disease• Vascular Dementia• Combined Alzheimer’s and Vascular

• Frontotemporal Dementia and Lewey Body Disease

• Developed from other Neurological Diseases

• Other

80-90%

10-20%

0 3 6 9 12

Early Stages

Community-basedCare

Late Stage -- Institutional

Care

Years

The Course of Dementing Disease

Family Caregiving

Caregiving

• Most care provided by families, usually by one caregiver; almost always a woman

• Family caregiving lasts a long time

• Caregivers pay a toll for what they do: Physical and Emotional Health Immune Function Sleep Disruption and Deprivation Social and Economic Impact

Caregiving: A New Role;An Unexpected Career

Nurse Social Worker Activity Planner and Coordinator Financial and Legal Affairs Manager Personal Care Attendant Security Specialist Driver Cook Launderer Etc.

A Menu of Help for Caregivers

• Direct Help• Counseling

• Support• Family Counseling

• Respite

• Training The SavvyCaregiverProgram

The Savvy Caregiver Program

The Savvy Caregiver Program:A Training Program for Caregivers

• The relationship provides the motiveBUT

• This is a role – a clinical “job” – for which few are likely to have had relevant prior training

The Savvy Distress Story

baseline 6-month

51

50

49

48

47

C=48.67

E=51.66

E=50.94

C=51.31

DISTRESS

52

Between Group Difference: p = .030Within Control Group Difference: p = .044

Overall Training Sequence

• Link Caregiving Work and ProblemsTo the underlying disease

-- It’s not Personal

• Identify Disease-Produced Losses

• Link Losses to Caregiving Issues

• Focus on Strategies for DealingWith the Issues

Knowledge and Skills

• What’s the disease taking away?• How can I adjust for the losses?

A Clinical Outlook (like a doctor or nurse)

• Let me step back and figure this out

A Sense of Competence and Mastery

• I’m Savvy and Street-Smart• I can handle this

What’s Needed for the Role?

At the Heart of Savvy Caregiving:

Recognizing and Compensating for Disease-Produced Losses

• Thinking• Emotion• Behavior• Performance

Dementia Erodes Thinking Powers

Reasoning Can’t negotiate

Language Can’t find words

Memory Retrograde amnesia

Judgment can’t see consequences

Dementia Erodes Thinking Powers

Abstraction Concrete thought

Attention Distractible

Organization Can’t self-direct

Perception Easily Confused

Caregiving Strategies: Don’t rely on Fading Powers – Anticipate and Solve the Puzzle

Memory Don’t test – don’t try to cure Use long-term memory Expect disinhibition – forgets

manners

Reasoning Don’t argue: Direct

Judgment Don’t count on it Be pre-emptive (driving)

Attention Redirect

Caregiving Strategies: Anticipation and Puzzle-Solving

PerceptionLook for clues

Abstraction Don’t deal in time: next

week is NOW Fathers and sons are the

same

Language Supply words Simplify speech

Organization Progressively provide structure

Consider the Following Sentences

• “We’re going to your brother’s for dinner on Thursday.”

• “If we can have hamburger tonight, I won’t have to go to the store

till the weekend.”

• “I’ll leave your lunch in the tupperware in the frig; eat at noon.”

• “Take the medicine 3 times a day for the next 10 days.”

• Wait till Thursday pm to talk about dinner at the brother’s house. • “Thursday” is an abstract concept

[Be Concrete]

• “We’re having hamburger tonight.” • need to think about contingencies and also deal abstractly (weekend)

[Be Directive – Do not Reason]

• Leave written note about lunch (plus reminder call)• relies on memory and a sense of time

[Control Reminders]

• Set up the meds and remind -- or administer them • organization and time sense

[Have no expectations -- Take Control]

Make a Savvy Shift:

Person

Others Surround-ings

Behavior

A Simple Model of Normal Behavior

Behavior

Behavior

Behavior

Person

Person

Person

Others

Others

Surroundings

Surroundings

Surroundings

Others

How Progressive Decline in Dementia Affects Behavior

DISEASE PROGRESSION

Progressively Lowered Stress Threshold in Dementia

PotentialCatastrophicReactions

FromOverstimulation

Potential forWithdrawal fromUnderstimulation

Ability toHandleMultipleTasks andVarious Stresses

ComfortZone

Normal Early Early-Middle Late-Middle LateStage of Dementia

High

Med.

Low

The Impact of Dementia on Emotions and Behavior

• All Behavior Has Meaning Look for what went on before what you saw happened

• The Universe is Closing in;

Confusion Discomfort Behavior

• Progressively Lowered Stress Threshold

Caregiving Strategies: Taking Control and Promoting Calm and Security

• If you’re in a blizzard, it’s often best to get off the freeway.

• The Caregiver is “It” S/he provides the safety net Control = Kindness

Conversations with Dementia

• “No one’s ever won an argument with Alzheimer’s”

• Deal with the emotional truth of the situation

Threats to Contented Involvementand Possible Consequences of Moving Out of

the Zone of Contented Involvement

Contented

InvolvementUnder-stimulation

DistressWithdrawal

Over-stimulation

DistressCatastrophic

Reaction

The Impact of Dementia on Performance – Doing Things Every Day

• Key Elements of Performance: Purpose Order Use

Purpose Order Use

The Key Elementsare lost in overlapping

progressive orderin dementia

Person

Support Structure

Behavior

The Anchors of Contented Involvement

Caregiving Strategies: Fit, Promoting Pleasant Involvement, and Settling for Less

• Fit: Link Activity to Ability

• Three Anchors of Pleasant Involvement: Person Structure Support

• Create a Routine and Forgive Yourself, in Advance, for not Sticking to it.

Summary• People aren’t born knowing how to be a

dementia family caregiver• Mantra: Don’t just do something; stand there.• Caregiving strategies: intentional responses to

disease-produced losses• Caregiving goal: pleasant days• Care for the instrument!