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Preserving Sense of Self Preserving Sense of Self amongst People with amongst People with Alzheimer’s Disease at Alzheimer’s Disease at the End of Their Lives the End of Their Lives Astrid Norberg Astrid Norberg Ersta Sköndal University College Ersta Sköndal University College Umeå University Umeå University University in Tromsø University in Tromsø Sense of Self amongst People with Alzheimer’s Disease at the end of

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Page 1: Preserving Sense of Self amongst People with Alzheimer’s Disease at the End of Their Lives Astrid Norberg Ersta Sköndal University College Umeå University

Preserving Sense of Self Preserving Sense of Self amongst People with amongst People with

Alzheimer’s Disease at Alzheimer’s Disease at the End of Their Lives the End of Their Lives

Astrid Norberg Astrid Norberg

Ersta Sköndal University CollegeErsta Sköndal University CollegeUmeå UniversityUmeå University

University in TromsøUniversity in Tromsø

Preserving a Sense of Self amongst People with Alzheimer’s Disease at the end of their Lives

Page 2: Preserving Sense of Self amongst People with Alzheimer’s Disease at the End of Their Lives Astrid Norberg Ersta Sköndal University College Umeå University

De-mentiaDe-mentiaWithout soul (mind)Without soul (mind)

(Jenkins & Price 1996)(Jenkins & Price 1996)

Page 3: Preserving Sense of Self amongst People with Alzheimer’s Disease at the End of Their Lives Astrid Norberg Ersta Sköndal University College Umeå University

UnbecomingUnbecoming((Fontana & Smith 1989) Fontana & Smith 1989)

De-selfingDe-selfing(Harrison 1993)(Harrison 1993)

Page 4: Preserving Sense of Self amongst People with Alzheimer’s Disease at the End of Their Lives Astrid Norberg Ersta Sköndal University College Umeå University

Dementia disease Dementia disease is a threat to is a threat to

sense of identitysense of identity

Page 5: Preserving Sense of Self amongst People with Alzheimer’s Disease at the End of Their Lives Astrid Norberg Ersta Sköndal University College Umeå University

Lucid momentsLucid momentsRemembersRemembersUnderstandsUnderstands

CaresCares

((Normann et al 1998)Normann et al 1998)

Page 6: Preserving Sense of Self amongst People with Alzheimer’s Disease at the End of Their Lives Astrid Norberg Ersta Sköndal University College Umeå University

Human Human beingbeing

Person with dementia Person with dementia diseasedisease

Page 7: Preserving Sense of Self amongst People with Alzheimer’s Disease at the End of Their Lives Astrid Norberg Ersta Sköndal University College Umeå University

How can How can we help a we help a

person person with AD?with AD?

Page 8: Preserving Sense of Self amongst People with Alzheimer’s Disease at the End of Their Lives Astrid Norberg Ersta Sköndal University College Umeå University

Subject Subject SelfSelf

PersonPerson

Page 9: Preserving Sense of Self amongst People with Alzheimer’s Disease at the End of Their Lives Astrid Norberg Ersta Sköndal University College Umeå University

SubjectSubjectPainPain

PleasurePleasureGriefGrief

MeaningMeaning

Page 10: Preserving Sense of Self amongst People with Alzheimer’s Disease at the End of Their Lives Astrid Norberg Ersta Sköndal University College Umeå University

Difficulty Difficulty localisating, localisating,

interpreting and interpreting and expressing expressing

feelingsfeelings

(Buffum et al 2007)(Buffum et al 2007)

Page 11: Preserving Sense of Self amongst People with Alzheimer’s Disease at the End of Their Lives Astrid Norberg Ersta Sköndal University College Umeå University

Who am I?Who am I?

Page 12: Preserving Sense of Self amongst People with Alzheimer’s Disease at the End of Their Lives Astrid Norberg Ersta Sköndal University College Umeå University

Personal identity Personal identity depending on depending on

memorymemory

(Parfit 1971, 1984) (Parfit 1971, 1984)

Page 13: Preserving Sense of Self amongst People with Alzheimer’s Disease at the End of Their Lives Astrid Norberg Ersta Sköndal University College Umeå University

Harrés Harrés theorytheory

IdentityIdentity

(Self 1, Self 2, Self (Self 1, Self 2, Self 3)3)

Page 14: Preserving Sense of Self amongst People with Alzheimer’s Disease at the End of Their Lives Astrid Norberg Ersta Sköndal University College Umeå University

Self 1Self 1My perspective

Anchored in body, place and time,””I wish, I feel, I

think”

Page 15: Preserving Sense of Self amongst People with Alzheimer’s Disease at the End of Their Lives Astrid Norberg Ersta Sköndal University College Umeå University

How can How can we help the we help the

person person with AD?with AD?

Page 16: Preserving Sense of Self amongst People with Alzheimer’s Disease at the End of Their Lives Astrid Norberg Ersta Sköndal University College Umeå University

Meeting as a Meeting as a YouYou

BodyBody

Page 17: Preserving Sense of Self amongst People with Alzheimer’s Disease at the End of Their Lives Astrid Norberg Ersta Sköndal University College Umeå University

I see youI see youI hear you I hear you I touch youI touch youI speak to I speak to

youyou

Page 18: Preserving Sense of Self amongst People with Alzheimer’s Disease at the End of Their Lives Astrid Norberg Ersta Sköndal University College Umeå University

Preserved Preserved sense of Self sense of Self

1?1?

Page 19: Preserving Sense of Self amongst People with Alzheimer’s Disease at the End of Their Lives Astrid Norberg Ersta Sköndal University College Umeå University

Embodied Embodied indentityindentity

(Kontos 2004)(Kontos 2004)

Page 20: Preserving Sense of Self amongst People with Alzheimer’s Disease at the End of Their Lives Astrid Norberg Ersta Sköndal University College Umeå University

CommunicatiCommunication through on through

bodybody

Page 21: Preserving Sense of Self amongst People with Alzheimer’s Disease at the End of Their Lives Astrid Norberg Ersta Sköndal University College Umeå University

Self 2Self 2

My knowledge

about myself

Page 22: Preserving Sense of Self amongst People with Alzheimer’s Disease at the End of Their Lives Astrid Norberg Ersta Sköndal University College Umeå University

My historyMy historyMy My

characteristicscharacteristicsMy opinions etc.My opinions etc.

Page 23: Preserving Sense of Self amongst People with Alzheimer’s Disease at the End of Their Lives Astrid Norberg Ersta Sköndal University College Umeå University

Self-biographical Self-biographical memorymemory

where we were born, our where we were born, our opinions etc.opinions etc.(semantic) (semantic)

special episodesspecial episodes(episodic)(episodic)

(Westmacott et al 2004)(Westmacott et al 2004)

Page 24: Preserving Sense of Self amongst People with Alzheimer’s Disease at the End of Their Lives Astrid Norberg Ersta Sköndal University College Umeå University

Life historyLife history

Semantic memoryEpisodic memoryImplicite memory

Page 25: Preserving Sense of Self amongst People with Alzheimer’s Disease at the End of Their Lives Astrid Norberg Ersta Sköndal University College Umeå University

Memory of Memory of childhood and childhood and

early early adulthoodadulthood

(Addis &Tippett 2004) (Addis &Tippett 2004)

Page 26: Preserving Sense of Self amongst People with Alzheimer’s Disease at the End of Their Lives Astrid Norberg Ersta Sköndal University College Umeå University
Page 27: Preserving Sense of Self amongst People with Alzheimer’s Disease at the End of Their Lives Astrid Norberg Ersta Sköndal University College Umeå University

Keep historyKeep history

RecallRecall

RecognizeRecognize

Page 28: Preserving Sense of Self amongst People with Alzheimer’s Disease at the End of Their Lives Astrid Norberg Ersta Sköndal University College Umeå University

Emotional Emotional tonetone

Interpretation based on Interpretation based on memory with the same memory with the same

emotional toneemotional tone

(Piefke et al 2003) (Piefke et al 2003)

Page 29: Preserving Sense of Self amongst People with Alzheimer’s Disease at the End of Their Lives Astrid Norberg Ersta Sköndal University College Umeå University

II

Me Me (several)(several)

Page 30: Preserving Sense of Self amongst People with Alzheimer’s Disease at the End of Their Lives Astrid Norberg Ersta Sköndal University College Umeå University

Personal mePersonal meSpiritual meSpiritual me

Social meSocial meMaterial meMaterial me

Moral meMoral meEthnic meEthnic me

Page 31: Preserving Sense of Self amongst People with Alzheimer’s Disease at the End of Their Lives Astrid Norberg Ersta Sköndal University College Umeå University

Nature ActivitiesObjects

Dead Others

God

Self

Page 32: Preserving Sense of Self amongst People with Alzheimer’s Disease at the End of Their Lives Astrid Norberg Ersta Sköndal University College Umeå University

How can How can we help a we help a

person person with AD?with AD?

Page 33: Preserving Sense of Self amongst People with Alzheimer’s Disease at the End of Their Lives Astrid Norberg Ersta Sköndal University College Umeå University

AmnesiaAmnesiaAgnosiaAgnosiaApraxiaApraxiaAphasiaAphasia

etc.etc.

Page 34: Preserving Sense of Self amongst People with Alzheimer’s Disease at the End of Their Lives Astrid Norberg Ersta Sköndal University College Umeå University

Nature ActivitiesObjects

Dead Others

God

Self

Page 35: Preserving Sense of Self amongst People with Alzheimer’s Disease at the End of Their Lives Astrid Norberg Ersta Sköndal University College Umeå University

Self 3Self 3

I as treated I as treated by othersby others

Page 36: Preserving Sense of Self amongst People with Alzheimer’s Disease at the End of Their Lives Astrid Norberg Ersta Sköndal University College Umeå University

The partner The partner co-creatingco-creating

Page 37: Preserving Sense of Self amongst People with Alzheimer’s Disease at the End of Their Lives Astrid Norberg Ersta Sköndal University College Umeå University

We We co-create co-create

each each othersothers

Page 38: Preserving Sense of Self amongst People with Alzheimer’s Disease at the End of Their Lives Astrid Norberg Ersta Sköndal University College Umeå University

How can How can we help a we help a

person person with AD?with AD?

Page 39: Preserving Sense of Self amongst People with Alzheimer’s Disease at the End of Their Lives Astrid Norberg Ersta Sköndal University College Umeå University

CommunicatiCommunication on

RelationshipRelationship

(Normann et al 2001)(Normann et al 2001)

Page 40: Preserving Sense of Self amongst People with Alzheimer’s Disease at the End of Their Lives Astrid Norberg Ersta Sköndal University College Umeå University

ConfirmationConfirmation

DignityDignitySignificanceSignificance

SubjectSubjectSelfSelf

PersonPerson

Page 41: Preserving Sense of Self amongst People with Alzheimer’s Disease at the End of Their Lives Astrid Norberg Ersta Sköndal University College Umeå University

PersonPersonRightsRights

(dignity, (dignity, information, information,

konfidentiality, konfidentiality, decision)decision)

Page 42: Preserving Sense of Self amongst People with Alzheimer’s Disease at the End of Their Lives Astrid Norberg Ersta Sköndal University College Umeå University

How can How can we help a we help a

person person with AD?with AD?

Page 43: Preserving Sense of Self amongst People with Alzheimer’s Disease at the End of Their Lives Astrid Norberg Ersta Sköndal University College Umeå University

Adapt to the Adapt to the person’s person’s abilityability

Page 44: Preserving Sense of Self amongst People with Alzheimer’s Disease at the End of Their Lives Astrid Norberg Ersta Sköndal University College Umeå University

Person Person THENTHEN

Person NOWPerson NOW

Page 45: Preserving Sense of Self amongst People with Alzheimer’s Disease at the End of Their Lives Astrid Norberg Ersta Sköndal University College Umeå University

Nature ActivitiesObjects

Dead Others

God

Self

Page 46: Preserving Sense of Self amongst People with Alzheimer’s Disease at the End of Their Lives Astrid Norberg Ersta Sköndal University College Umeå University

Possible Possible selvesselves

What you wish to beWhat you wish to be

What you fear to beWhat you fear to be

What you can beWhat you can be((Cotrell & Hooker 2005)Cotrell & Hooker 2005)

Page 47: Preserving Sense of Self amongst People with Alzheimer’s Disease at the End of Their Lives Astrid Norberg Ersta Sköndal University College Umeå University

Preserve Preserve selfself

Not show Not show deficits deficits

Show Show strengthsstrengths

Page 48: Preserving Sense of Self amongst People with Alzheimer’s Disease at the End of Their Lives Astrid Norberg Ersta Sköndal University College Umeå University

Subject Subject SelfSelf

PersonPerson

Page 49: Preserving Sense of Self amongst People with Alzheimer’s Disease at the End of Their Lives Astrid Norberg Ersta Sköndal University College Umeå University

Experienced by selfExperienced by selfObserved by othersObserved by others

Expressed by self Expressed by selfExpressed by othersExpressed by others

Intended by self Intended by selfInterpreted by selfInterpreted by self

Page 50: Preserving Sense of Self amongst People with Alzheimer’s Disease at the End of Their Lives Astrid Norberg Ersta Sköndal University College Umeå University

Human Human beingbeing

Person with dementia Person with dementia diseasedisease


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