1. Awareness and selfreflection in younger persons with dementia Kjersti Wogn-Henriksen Psychologist, phd-student Molde sykehus Norway Brussel May 2009

2. 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 Supplied with background information, somatic and neuropsychological data Followed for 4 years

3. The human being is a self-interpretive animal ( Charles Taylor) Samfoto The human being is a self- interpretive animal. C. Taylor

4. Nosce te ipsum Know Thyself

5. Ludvig Eikaas:

6. self I identity integrity personhood person

7. Kay Tombes 1997 –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

8. Insight 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

9. 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)

10. 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

11. 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?

12. The complex process of awareness 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

13. Who am I? What lies ahead of me? Why am I this way? What can I do? Experience is not so much what happens to us – as what we make of what happens to us. A. Huxley

14. 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).

15. 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.

16. Memory – necessary for the self ? Tulving Semantic memory Episodic memory – Self-biographic memory

17. 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?

18. Samfoto

19. 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????

20. 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 2005

21. 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!.

22. Samfoto Who will I be?

23. Thank you for your attention! kjersti.wogn-henriksen@helsenr.no