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!