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Awareness and selfreflection in younger persons with dementia

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

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Awareness and selfreflection in younger persons with dementia

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

  2. Awareness and selfreflectionin younger persons with dementiaK. Wogn-Henriksen supervisor ass.prof B.Loa Knizek NTNUco-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) The human being is a self-interpretive animal. C. Taylor Samfoto

  4. Nosce te ipsum • Know Thyself

  5. Ludvig Eikaas:

  6. Kay Tombes1997 –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

  7. 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

  8. 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)

  9. 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

  10. 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?

  11. 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

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

  13. 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).

  14. 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.

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

  16. 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?

  17. Samfoto

  18. 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????

  19. Self-maintainin strategies: ”I want to be me!” Self-adjusting strategies: ”It will get worse! I’m not ill! ----- Or have I forgotten?? Dynamics of self-regulation Clare 2005

  20. 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!.

  21. Who will I be? Samfoto

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

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