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

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

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

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

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

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

sense of identitysense of identity

Lucid momentsLucid momentsRemembersRemembersUnderstandsUnderstands

CaresCares

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

Human Human beingbeing

Person with dementia Person with dementia diseasedisease

How can How can we help a we help a

person person with AD?with AD?

Subject Subject SelfSelf

PersonPerson

SubjectSubjectPainPain

PleasurePleasureGriefGrief

MeaningMeaning

Difficulty Difficulty localisating, localisating,

interpreting and interpreting and expressing expressing

feelingsfeelings

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

Who am I?Who am I?

Personal identity Personal identity depending on depending on

memorymemory

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

Harrés Harrés theorytheory

IdentityIdentity

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

Self 1Self 1My perspective

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

think”

How can How can we help the we help the

person person with AD?with AD?

Meeting as a Meeting as a YouYou

BodyBody

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

youyou

Preserved Preserved sense of Self sense of Self

1?1?

Embodied Embodied indentityindentity

(Kontos 2004)(Kontos 2004)

CommunicatiCommunication through on through

bodybody

Self 2Self 2

My knowledge

about myself

My historyMy historyMy My

characteristicscharacteristicsMy opinions etc.My opinions etc.

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)

Life historyLife history

Semantic memoryEpisodic memoryImplicite memory

Memory of Memory of childhood and childhood and

early early adulthoodadulthood

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

Keep historyKeep history

RecallRecall

RecognizeRecognize

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)

II

Me Me (several)(several)

Personal mePersonal meSpiritual meSpiritual me

Social meSocial meMaterial meMaterial me

Moral meMoral meEthnic meEthnic me

Nature ActivitiesObjects

Dead Others

God

Self

How can How can we help a we help a

person person with AD?with AD?

AmnesiaAmnesiaAgnosiaAgnosiaApraxiaApraxiaAphasiaAphasia

etc.etc.

Nature ActivitiesObjects

Dead Others

God

Self

Self 3Self 3

I as treated I as treated by othersby others

The partner The partner co-creatingco-creating

We We co-create co-create

each each othersothers

How can How can we help a we help a

person person with AD?with AD?

CommunicatiCommunication on

RelationshipRelationship

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

ConfirmationConfirmation

DignityDignitySignificanceSignificance

SubjectSubjectSelfSelf

PersonPerson

PersonPersonRightsRights

(dignity, (dignity, information, information,

konfidentiality, konfidentiality, decision)decision)

How can How can we help a we help a

person person with AD?with AD?

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

Person Person THENTHEN

Person NOWPerson NOW

Nature ActivitiesObjects

Dead Others

God

Self

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)

Preserve Preserve selfself

Not show Not show deficits deficits

Show Show strengthsstrengths

Subject Subject SelfSelf

PersonPerson

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

Human Human beingbeing

Person with dementia Person with dementia diseasedisease