Kjersti Wogn-Henriksen Psychologist, phd-student Molde sykehus Norway Brussel May 2009
Awareness and selfreflection in younger persons with dementia K. Wogn-Henriksen supervisor ass.prof B.Loa Knizek NTNU co-supervisor prf K Engedal UiO A phenomenological study of awareness and coping Semi-structured in-depth interviews Qualitative thematic analysis and interpretation Followed for 4 years
The human being is a self-interpretive animal (Charles Taylor)
Nosce te ipsum Know Thyself
Ludvig Eikaas:
Kay Tombes 1997 –philosopher and MSpatient The voice of the life-world – the persons own experience of being sick the traditional case history as understood during consultation
Insight Awareness The capacity to perceive the ”self” in relatively ”objective” terms while maintaining a sense of subjectivity Knowledge of deficits Define new realistic goals Prigatano og Schachter 1996,Fleming et al 1996
Phenomenological studies of awareness 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)
Participants 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 interviews 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 and coping … Preconception of dementia 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
Sofie 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 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 – necessary for the self ?Tulving Semantic memory Episodic memory –
Some 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?
Sofie 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?? Self-maintainin strategies: ”I want to be me!”
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!.
Thank you for your attention! kjersti.wogn-henriksen@helsenr.no
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