Carole A. Cohen MD

1
Caring for the Caregiver How to Make a
Difference

• Carole A. Cohen MD
• March 10, 2008

2
Learning Objectives

• Understand the dementia journey over time
• Appreciate the challenges faced by all involved
• Describe helpful strategies to support caregivers

3
Reflective Thought

• When we walk to the edge of all the light we
  have and take a step into the darkness of the
  unknown, we must believe one of two things will
  happen There will be something solid for us to
  stand upon. Or we will be taught to fly.
• -Anonymous

4
Introduction

• Elements of fantasy A new perspective
• The Dementia journey
• Being a caregiver guide support
• Imagine
  Reflect

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Elements of Fantasy A New Perspective

• Heroine (or Hero)
• Companion
• Quest
• Obstacles
• Magic

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Elements of Fantasy

• Heroine person with dementia
• Companion caregiver
• Quest quality of life
• Obstacles
• Magic support

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Imagine Reflect
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Preparing for a Journey

• What kind of traveler are you?
• How do you deal with the unknown, with obstacles
  etc.?
• Who would you take on the journey?
• Are they a good traveler?
• Do you travel well together?
• Would either of you ask for directions?

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The Dementia Journey

• gt 10 years duration
• Multiple stages
• Multiple settings
• Multiple
• challenges

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The Dementia Journey

• No road map or known destination
• Not predictable
• Changes in direction often precipitated by a
  crisis
• Many choices ethical dilemmas
• Imagine Reflect

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Quest Quality of Life

• the individuals perceptions of their
  position in life in the context of the culture
  and value system in which they live and in
  relationship to their goals, expectations and
  standards
• -WHO definition

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Quality of Life Dementia

• Sense of identity
• Meaningful activity
• Adequate food, shelter, clothing
• Companionship
• Sense of security

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The Dementia Journey Setting the Stage

• Heroine Companion
• personality
• coping style
• social support
• cultural norms
• previous experience with the health care
  system

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The Dementia Journey Begins
Pre-diagnosis
Behavioural Changes
Interpretation of Changes
Help Seeking
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The Dementia Journey Entering the System

• Diagnostic workup
• Communicating the diagnosis
• After the diagnosis

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The Dementia Journey Navigating the System

• Sharing the news
• Asking for help
• Using the help

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The Dementia Journey The Long Haul

• Progressive changes losses
• Challenges positive experiences
• Fatigue frustration
• Crises

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The Dementia Journey Moving to a New Home

• Promises made
• Circumstances of the move
• Disruption to the routine
• Establishing a new routine

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The Dementia Journey Nearing the End

• ? cognitive abilities
• ?physical abilities
• Ethical issues
• Ideas re death dying

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Magic Support

• Caregiver
• Guide Support

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Caregiver Guide

• To show the way
• To direct the course
• To give instruction to instruct

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Caregiver Support

• To carry or bear the weight of
• To give courage
• To give approval, faith, confidence
• To help or comfort

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Caregiver Guide Support

• Try to see the client/caregiver in their journey
• Look
• Listen

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Caregiver Guide Support

• Questions to answer
• Help you can give

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Questions to Answer

• Caregiver person with dementia
• Caregiver beliefs knowledge
• Caregiver expectations
• Caregiver challenges rewards
• Caregiver coping style

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Questions to Answer

• Caregiver assistance response
• Where are you meeting the caregiver
• Place (home, care facility, clinic)
• Time in the dementia journey
• What lies behind and ahead

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Help You Can Give

• Dont make assumptions
• Meet caregivers where they are
• Remember they have not been on this journey
  before
• Learn from caregivers about the person they know

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Help You Can Give

• Help them hope for the best and plan for the
  worst
• Recognize their grief
• Recognize their successes

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Help You Can Provide

• Provide education re illness
• Provide instruction re coping with behaviours
• Insure caregivers have emotional support
• Help caregivers ask for help

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Conclusion

• Dementia as a journey
• Imagine reflect to appreciate the experience
• Strive to understand the individual caregiver
  experience
• Help you can provide the caregiver

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Reflective Thought

• When we walk to the edge of all the light we
  have and take a step into the darkness of the
  unknown, we must believe one of two things will
  happen There will be something solid for us to
  stand upon. Or we will be taught to fly.
• -Anonymous