savvy strategies for caregivers with loved ones living with dementia ken hepburn, phd nell hodgson...
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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!