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Caring for the Caregiver: How to Make a Difference. Carole A. Cohen MD March 10, 2008. Learning Objectives. Understand the dementia journey over time Appreciate the challenges faced by all involved Describe helpful strategies to support caregivers. Reflective Thought.

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Carole A. Cohen MD March 10, 2008

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Caring for the Caregiver:

How to Make a Difference

Carole A. Cohen MD

March 10, 2008


Learning Objectives

  • Understand the dementia journey over time

  • Appreciate the challenges faced by all involved

  • Describe helpful strategies to support caregivers


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


Introduction

  • Elements of fantasy: A new perspective

  • The Dementia journey

  • Being a caregiver guide & support

    Imagine & Reflect


Elements of Fantasy: A New Perspective

  • Heroine (or Hero)

  • Companion

  • Quest

  • Obstacles

  • Magic


Elements of Fantasy

  • Heroine = person with dementia

  • Companion = caregiver

  • Quest = quality of life

  • Obstacles

  • Magic = support


Imagine & Reflect


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?


The Dementia Journey

  • > 10 years duration

  • Multiple stages

  • Multiple settings

  • Multiple

    challenges


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


Quest = Quality of Life

“the individual’s 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


Quality of Life & Dementia

  • Sense of identity

  • Meaningful activity

  • Adequate food, shelter, clothing

  • Companionship

  • Sense of security


The Dementia Journey: Setting the Stage

Heroine + Companion

  • personality

  • coping style

  • social support

  • cultural norms

  • previous experience with the health care system


The Dementia Journey Begins

Pre-diagnosis

Behavioural Changes

Interpretation of Changes

Help Seeking


The Dementia Journey: Entering the System

  • Diagnostic workup

  • Communicating the diagnosis

  • After the diagnosis


The Dementia Journey: Navigating the System

  • Sharing the news

  • Asking for help

  • Using the help


The Dementia Journey: The Long Haul

  • Progressive changes & losses

  • Challenges & positive experiences

  • Fatigue & frustration

  • Crises


The Dementia Journey: Moving to a New Home

  • Promises made

  • Circumstances of the move

  • Disruption to the routine

  • Establishing a new routine


The Dementia Journey: Nearing the End

  •  cognitive abilities

  • physical abilities

  • Ethical issues

  • Ideas re death & dying


Magic = Support

Caregiver

Guide & Support


Caregiver Guide

  • To show the way

  • To direct the course

  • To give instruction; to instruct


CaregiverSupport

  • To carry or bear the weight of

  • To give courage

  • To give approval, faith, confidence

  • To help or comfort


Caregiver Guide & Support

  • Try to see the client/caregiver in their journey

  • Look

  • Listen


Caregiver Guide & Support

  • Questions to answer

  • Help you can give


Questions to Answer

  • Caregiver + person with dementia

  • Caregiver beliefs & knowledge

  • Caregiver expectations

  • Caregiver challenges & rewards

  • Caregiver coping style


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


  • Help You Can Give

    • Don’t make assumptions

    • Meet caregivers where they are

    • Remember they have not been on this journey before

    • Learn from caregivers about the person they know


    Help You Can Give

    • Help them “hope for the best and plan for the worst”

    • Recognize their grief

    • Recognize their successes


    Help You Can Provide

    • Provide “education” re illness

    • Provide “instruction” re coping with behaviours

    • Insure caregivers have emotional support

    • Help caregivers ask for help


    Conclusion

    • Dementia as a journey

    • “Imagine & reflect” to appreciate the experience

    • Strive to understand the individual caregiver experience

    • Help you can provide the caregiver


    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


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