2. STORIES AND EMBODIED MEMORIES IN DEMENTIA Lars-Christer Hydén, PhD Center for Dementia Research (CEDER) Linköping University, Sweden CEDER - Center for Dementia Research

3. Interest in people with dementia as storytellers.

4. Dementia: a brain disease first resulting in linguistic and cognitive challenges - later on more functions are involved - and eventually resulting in death. A disease with many faces and causes.

5. Storytelling: * is ubiquitous; * is important in presenting and negotiating identities; * important in understanding other persons and the world.

6. Research on dementia invites us to re-think some theoretical issues: (1) what is memory? (2) what does ”losing memory” mean and imply?

7. Episodic memory Event representation Semantic memory Words & linguistic constructions Talk: linguistic representation of retrieved events

8. Embodiment

9. Embodiment: (1) Communicative body (2) ”Embodied cognition” and a combinations of these

10. An example Laura * 52 years old * early on-set dementia * two children * divorced

11. The interview Thematic: - diagnosis - life history - present life

12. The interview situation * In Laura’s home * Social support person present, and * Two interviewers Video recorded

13. Set up

14. The start of the sequence: Laura is telling about where she has been living - as part of that story she tells about separating from her husband and about her son.

15. The sound file

16. Laura:well my son ehh lives with his father and we all lived there I 1 :mm Laura:we separated and then we had different he came to me and then it was empty I 2 :yes Laura:and then I 2 :[alternate residence] Laura: [we did this for a while]

17. Laura:well my son ehh (1,5s) lives with his father (2s) and we all lived there (0.75s) I 1 :mm Laura:we separated and then (1,5s) we had different (2s) he came to me (0.8) and then it was empty (0.5s) I 2 :yes Laura:and then (2.0s) I 2 :[alternate residence] Laura: [we did this for a while]

18. Laura:well my son ehh lives with his father and we all lived there  I 1 :mm Laura:we separated and then  we had different  he came to me  and then it was empty  I 2 :yes Laura:and then  I 2 :[alternate residence] Laura: [we did this for a while] 

19. Build a case for incompleteness: * frequent in the interview * pauses quite long * grammatical constructions: lack of words that differentiate in events, situations and physical arrangements. Utterances are ’syncretic’.

20. The video

21. The gestures, eyes, body posture

22. Laura:well my son ehh Gestures:((hands resting in knee - default)) Gaze: ((gaze directed towards I 1 ))

23. Laura:well my son ehh Gestures:((hands resting in knee - default)) Gaze: ((gaze directed towards I 1 )) Laura:lives with his father Laura:and w-we all lived there ((I 1 : mm)) Laura:w-we separated Gestures:((raises both hands in outward movement))

24. Laura:well my son ehh Gestures:((hands resting in knee - default)) Gaze: ((gaze directed towards I 1 )) Laura:lives with his father Laura:and w-we all lived there ((I 1 : mm)) Laura:w-we separated and Gestures:((raises both hands in outward movement)) Laura:and then Gestures:((join hands))

25. Laura:well my son ehh Gestures:((hands resting in knee - default)) Gaze: ((gaze directed towards I 1 )) Laura:lives with his father Laura:and w-we all lived there ((I 1 : mm)) Laura:w-we separated Gestures:((raises both hands in outward movement)) Laura:and then Gestures:((join hands)) Laura:we had different Gestures:((outward hand movements hands separated))

26. Laura:well my son ehh Gestures:((hands resting in knee - default)) Gaze: ((gaze directed towards I 1 )) Laura:lives with his father Laura:and w-we all lived there ((I 1 : mm)) Laura:w-we separated Gestures:((raises both hands in outward movement)) Laura:and then Gestures:((join hands)) Laura:we had different Gestures:((outward hand movements hands separated)) Laura:he came to me Gestures:((right hand in to the body midline))

27. Laura:we had different Gestures:((outward hand movements hands separated)) Laura:he came to me Gestures:((right hand in to the body midline)) Laura:and then it was empty ((small laughter)) I 2 : yes Gestures:((left hand in to body midline)) Gaze: ((shifts gaze to I 2 ))

28. Laura:and then it was empty ((small laughter)) I 2 : yes Gestures:((left hand in to body midline)) Gaze: ((shifts gaze to I 2 )) Laura:and then Gestures:((right hand from right to midline => both hand to default position)) Gaze: ((shifts gaze to I 1 ))

29. Laura:well my son ehh Gestures:((hands resting in knee - default)) Gaze: ((gaze directed towards I 1 )) Laura:lives with his father Laura:and w-we all lived there ((I 1 : mm)) Laura:w-we separated and Gestures:((raises both hands in outward movement)) Laura:then Gestures:((join hands)) Laura:we had different Gestures:((outward hand movements hands separated)) Laura:he came to me Gestures:((right hand in to the body midline)) Laura:and then it was empty ((small laughter)) I 2 : yes Gestures:((left hand in to body midline)) Gaze: ((shifts gaze to I 2 )) Laura:and then Gestures:((right hand from right to midline => both hand to default position)) Gaze: ((shifts gaze to I 1 )) I 2 : [alternate residence] Laura:[we did this for a while] Gaze: ((shifts gaze to I 2 ))

30. Sum up of analysis: * Gestures take on the functions of words;

31. Sum up of analysis: * Gestures take on the functions of words; * Complex gestures - events;

32. Sum up of analysis: * Gestures take on the functions of words; * Complex gestures - events; * Gestures connected to embodied experiences;

33. Sum up of analysis: * Gestures take on the functions of words; * Complex gestures - events; * Gestures connected to embodied experiences; * Gestures are ”syncretic”.

34. Conclusions * Indication that memories are not representations stored in an archive but rather bits and pieces of modular (embodied) experiences and patterns of experiences that can be re-created in a new situation.

35. Conclusions * Experiential fragments are not ”mapped” into linguistic expressions, but rather developed through various semiotic tools (language, gestures).

36. Conclusions * Dementia do not lead to erasure of ”memories” in the brain, but to loss of certain possibilities - and inventions of new possibilities.

37. The End