Awareness and Awareness and

selfreflectionselfreflection inin younger persons with dementiayounger persons with dementia

Kjersti Wogn-HenriksenKjersti Wogn-HenriksenPsychologist, phd-studentPsychologist, phd-student

Molde sykehus NorwayMolde sykehus Norway

Brussel May 2009Brussel May 2009

Awareness and Awareness and selfreflectionselfreflection in younger in younger

persons with dementiapersons with dementia K. K. Wogn-Henriksen Wogn-Henriksen

supervisor ass.prof B.Loa Knizek NTNUsupervisor ass.prof B.Loa Knizek NTNUco-supervisor prf K Engedal UiOco-supervisor prf K Engedal UiO

• A phenomenological study of awareness and coping

• Semi-structured in-depth interviews• Qualitative thematic analysis and interpretation• Supplied with background information, somatic

and neuropsychological data• Followed for 4 years

The human being is a self-interpretive animal (The human being is a self-interpretive animal (Charles Taylor)Charles Taylor)

Samfoto

The human being is a self-interpretive animal. C. Taylor

•Nosce te ipsum•Know Thyself

Ludvig Eikaas:Ludvig Eikaas:

self

I

identity

integrity

personhood

person

Kay TombesKay Tombes 1997 –philosopher and MSpatient1997 –philosopher and MSpatient

• The voice of the life-world –

the persons own experience of being sick

• The voice of medicine -

the traditional case history as understood during consultation

Insight AwarenessInsight Awareness• The capacity to perceive the ”self” in

relatively ”objective” terms while maintaining a sense of subjectivity

• Knowledge of deficits• Functional implications• Define new realistic goals

Prigatano og Schachter 1996,Fleming et al 1996

Phenomenological studies of Phenomenological studies of awarenessawareness

• 2 of 10 show little or no insight when diagnosed with AD (Vogel 2007, 2008, Haugen 2008)

• Growing body of research exploring subjective aspects of dementia (Clare et al 2004, 2005, 2007)

• Several studies show more understanding in the pwd than assumed (Sabat 2002, 2007, Kitwood 1997, Wogn-Henriksen 1997,

• Younger seem to understand more than older that something is wrong (Woods 2000, Haugen 2004)

ParticipantsParticipants

• Persons with AD before 65

• 7 participants: 5 women, 2 men

• Age 52-68 mean 59

• MMSE 19 – 29 mean 23

• Duration of symptoms 11/2 yrs – 7 yrs

• Time since diagnosis 2mths - 5 yrs

• All living at home at first interview

Topics to be explored in the Topics to be explored in the interviewsinterviews

• The experience of having dementia (cognition, emotion, behavior, everyday)

• The meaning of the diagnosis

• Coping adjustment

• Social relations marriage, family, communication, being in the world,

• Challenges: autonomy, facing the future, who will I be?

The complex process of awareness The complex process of awareness and coping …and coping …

• Preconception of dementia

• Perception of change

• Feedback from family and professionals

• Integrate one’s experiences with views of others

• Accept, come to terms with

• Explore options for coping within one’s repertoire of strategies

Who am I?

What lies

ahead of me?

Why am I this

way?

What can I do?

What can I do?

Experience is not so much what happens to us – as what we make of what happens to us. A.

Huxley

Sofie 1Sofie 1

• K: Some time ago your doctor told you that you had dementia.

• S: I guess somebody said something of the sort … (with reluctance)

• K: Do you think otherwise?

• S: I don’t know. They say so… (sigh).

Sofie 1Sofie 1

• K: When I called –

• S (interrupts) :Then I have to try to og back: Did you call? When? Why?

• K: Mmm. But can you trace back to when I called?

• S: No – that is gone. I cannot remember that.

Memory – Memory – necessary for the self ?necessary for the self ?TulvingTulving

• Semantic memory

• Episodic memory –

Self-biographic memory

Some relevant clinical issuesSome relevant clinical issues

• Has Sofie been told in an efficient way?

• Will time be of help?

• Are there signs of organic dysfunction that might complicate insight?

• Motivated denial?

• Social arenas for support?

• Contextual contributing factors?

Samfoto

Sofie 1Sofie 1

• I don’t know if I’m sick!

It’s probably something you made up;

it is all over-sized!

How did you find out? How was I involved with this to start with? Who said I was ill? Did I say so? Or did someone else????

I’m not ill! ----- Or have I forgotten??I’m not ill! ----- Or have I forgotten??

• Self-maintainin

strategies:

• ”I want to be me!”

• Self-adjusting strategies:

• ”It will get worse!

Dynamics of self-regulation Clare 2005Dynamics of self-regulation Clare 2005

Sofie:Sofie:

• I don’t think my memory is that bad. I think I manage …. OK. And I would add:

a lot of stuff is not worth remembering. I believe I roughly remember … enough!.

Samfoto

Who will I be?

• Thank you for your attention!

• kjersti.wogn-henriksen@helsenr.no