Carole A. Cohen MD

March 10, 2008

Caring for the Caring for the Caregiver: Caregiver:

How to Make a How to Make a DifferenceDifference

Learning ObjectivesLearning Objectives

• Understand the dementia journey over Understand the dementia journey over timetime

• Appreciate the challenges faced by all Appreciate the challenges faced by all involvedinvolved

• Describe helpful strategies to support Describe helpful strategies to support caregiverscaregivers

Reflective ThoughtReflective Thought

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

we will be taught to fly.”we will be taught to fly.”

-Anonymous-Anonymous

IntroductionIntroduction

• Elements of fantasy: A new perspectiveElements of fantasy: A new perspective• The Dementia journeyThe Dementia journey• Being a caregiver guide & supportBeing a caregiver guide & support

Imagine & Imagine & ReflectReflect

Elements of Fantasy: A Elements of Fantasy: A New PerspectiveNew Perspective

• Heroine (or Hero)Heroine (or Hero)• CompanionCompanion• QuestQuest• ObstaclesObstacles• MagicMagic

Elements of FantasyElements of Fantasy

• Heroine = person with dementiaHeroine = person with dementia• Companion = caregiverCompanion = caregiver• Quest = quality of lifeQuest = quality of life• ObstaclesObstacles• Magic = supportMagic = support

Imagine & ReflectImagine & Reflect

Preparing for a JourneyPreparing for a Journey• What kind of traveler are you?What kind of traveler are you?• How do you deal with the unknown, with How do you deal with the unknown, with

obstacles etc.?obstacles etc.?• Who would you take on the journey?Who would you take on the journey?• Are they a good traveler?Are they a good traveler?• Do you travel well together?Do you travel well together?• Would either of you ask for directions?Would either of you ask for directions?

The Dementia JourneyThe Dementia Journey

• > 10 years duration> 10 years duration• Multiple stagesMultiple stages• Multiple settingsMultiple settings• Multiple Multiple

challengeschallenges

The Dementia JourneyThe Dementia Journey• No road map or known destinationNo road map or known destination• Not predictableNot predictable• Changes in direction often precipitated by a crisisChanges in direction often precipitated by a crisis• Many choices; ethical dilemmasMany choices; ethical dilemmas

Imagine & Imagine & ReflectReflect

Quest = Quality of LifeQuest = Quality of Life

““the individual’s perceptions of their the individual’s perceptions of their position in life in the context of the position in life in the context of the

culture and value system in which they culture and value system in which they live and in relationship to their goals, live and in relationship to their goals,

expectations and standards”expectations and standards”

-WHO definition-WHO definition

Quality of Life & Quality of Life & DementiaDementia

• Sense of identitySense of identity• Meaningful activityMeaningful activity• Adequate food, shelter, clothingAdequate food, shelter, clothing• CompanionshipCompanionship• Sense of securitySense of security

The Dementia Journey: The Dementia Journey: Setting the StageSetting the Stage

Heroine + Companion• personalitypersonality• coping stylecoping style• social supportsocial support• cultural normscultural norms• previous experience with the health care previous experience with the health care

systemsystem

The Dementia Journey BeginsThe Dementia Journey Begins

Help Help SeekingSeeking

Pre-diagnosis Pre-diagnosis

Behavioural ChangesBehavioural Changes

Interpretation of ChangesInterpretation of Changes

The Dementia Journey: The Dementia Journey: Entering the SystemEntering the System

• Diagnostic workupDiagnostic workup• Communicating the diagnosisCommunicating the diagnosis• After the diagnosisAfter the diagnosis

The Dementia Journey: The Dementia Journey: Navigating the SystemNavigating the System

• Sharing the newsSharing the news• Asking for helpAsking for help• Using the helpUsing the help

The Dementia Journey: The Dementia Journey: The Long HaulThe Long Haul

• Progressive changes & lossesProgressive changes & losses• Challenges & positive experiencesChallenges & positive experiences• Fatigue & frustrationFatigue & frustration• CrisesCrises

The Dementia Journey: The Dementia Journey: Moving to a New HomeMoving to a New Home

• Promises madePromises made• Circumstances of the moveCircumstances of the move• Disruption to the routineDisruption to the routine• Establishing a new routineEstablishing a new routine

The Dementia Journey: The Dementia Journey: Nearing the EndNearing the End

cognitive abilitiescognitive abilities physical abilitiesphysical abilities• Ethical issues Ethical issues • Ideas re death & dyingIdeas re death & dying

Magic = SupportMagic = Support

Caregiver Caregiver

Guide & SupportGuide & Support

Caregiver Caregiver GuideGuide

• To show the wayTo show the way• To direct the courseTo direct the course• To give instruction; to instructTo give instruction; to instruct

CaregiverCaregiver SupportSupport

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

Caregiver Guide & Caregiver Guide & SupportSupport

• Try to see the client/caregiver Try to see the client/caregiver in their journeyin their journey

• LookLook• ListenListen

Caregiver Guide & Caregiver Guide & SupportSupport

• Questions to answerQuestions to answer• Help you can giveHelp you can give

Questions to AnswerQuestions to Answer

• Caregiver + person with dementiaCaregiver + person with dementia• Caregiver beliefs & knowledgeCaregiver beliefs & knowledge• Caregiver expectationsCaregiver expectations• Caregiver challenges & rewardsCaregiver challenges & rewards• Caregiver coping styleCaregiver coping style

Questions to AnswerQuestions to Answer

• Caregiver assistance & responseCaregiver assistance & response• Where are you meeting the caregiver: Where are you meeting the caregiver:

• Place (home, care facility, clinic)Place (home, care facility, clinic)• Time in the dementia journeyTime in the dementia journey

• What lies behind and aheadWhat lies behind and ahead

Help You Can GiveHelp You Can Give

• Don’t make assumptionsDon’t make assumptions• Meet caregivers where they areMeet caregivers where they are• Remember they have not been on this Remember they have not been on this

journey beforejourney before• Learn from caregivers about the person Learn from caregivers about the person

they knowthey know

Help You Can GiveHelp You Can Give

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

• Recognize their griefRecognize their grief• Recognize their successesRecognize their successes

Help You Can ProvideHelp You Can Provide

• Provide “Provide “educationeducation” re illness” re illness• Provide “Provide “instructioninstruction” re coping with ” re coping with

behavioursbehaviours• Insure caregivers have Insure caregivers have emotional emotional

supportsupport• Help caregivers Help caregivers ask for helpask for help

ConclusionConclusion• Dementia as a journeyDementia as a journey• ““Imagine & reflect” to appreciate the Imagine & reflect” to appreciate the

experienceexperience• Strive to understand the individual caregiver Strive to understand the individual caregiver

experienceexperience• Help you can provide the caregiverHelp you can provide the caregiver

Reflective ThoughtReflective Thought

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

-Anonymous-Anonymous