The Body in Care : Experiences of People with Dementia in a Residential Care Setting Sharon Koehn, Ph.D. Elisabeth Dran

1. The Body in Care: Experiences of People with Dementia in a Residential Care Setting Sharon Koehn, Ph.D. Elisabeth Drance, MD, FRCPC Jean-Francois Kozak, Ph.D. Canadian Association on Gerontology Annual Scientific and Educational Meeting, 3rd November 2007

2. Outline • Introducing the study • “Three Bodies” in the literature and in our data • Implications

3. Management of Challenging Behaviours Through Physical and Social Environmental Design among Residents With Dementia 20-bed SCU for people with dementia Renovation of dining, bathing & patio areas Mixed-method study Participant observation Clinical measures (CMAI, CIDD, MDS) Videotaping Focus groups – staff, family Interviews – residents, staff, family Unique research opportunity

4. The three bodies Scheper-Hughes and Lock (1987) “advocate the deconstruction of received concepts about the body and begin this process by examining three perspectives from which the body may be viewed: (1) as a phenomeno-logically experienced individual body-self; (2) as a social body, a natural symbol for thinking about relationships among nature, society, and culture; and (3) as a body politic, an artefact of social and political control.”

5. Dementia Care Mapping A person-centered approach to dementia care that focuses on the interdependency of the quality of the care environment and the relative quality of life experienced by people with dementia. Trained observers record • Quality of Life elements: • Relative well-being • Affect • Engagement • Occupation • Quality of care practice as it promotes or undermines personhood

6. Merleau-Ponty’s body-subject • The person ≠ consciousness alone, but also the body • Also has an impact on subjectivity • Demands that we pay attention to the environment – personhood can be maintained by attention to surroundings (need to be humane and homelike)

7. Person-environment interaction • Optimal stimulation and meaningful activity • Human contact • Safety and supervision • Individual care • Flexibility

8. Interpreting the body-subject “The ageless self maintains continuity through a symbolic, creative process. The self draws meaning from the past, interpreting and recreating it as a resource for being in the present” (Kaufman, 1986:13-14) • How does the person with dementia continue to create meaning? • What does the body communicate about that creative process?

9. The lived body in dementia • Phinney & Chesla (2003): • Interpretive phenomenological analysis to reveal how dementia symptoms are experienced in and through the lived body • Sample: community-living people with mild-moderate dementia • Embodied knowledge breaks down → reflective stance (think it through) → disorganization → blank (world devoid of meaning)

10. Summing Up: Individual Body • Talking is not the only form of communication • Alternative modes include singing, body language, touch … • Pre-dementia, these are culture-specific; is this true as the dementia progresses?

11. The social body “The body has no intrinsic meaning. Populations create their own meanings and thus their own bodies; but how they create, and then change them, and why, reflects the social body” (Synnott, 1992) “Just as bodily changes are felt immediately in the metaphoric process of thought, so the intentional nature of metaphor ensures that thoughts may be felt immediately in the body” (Kirmayer 1992:336).

12. Old, “demented” bodies • In Western culture, old bodies are often stigmatized; considered, for the most part, as undesirable, metaphors of breakdown and decreased social status • “The needs of the physical body are used by carers to define the social body of the elderly person. … Lost physical abilities [mean] lost adult social status as Mr or Mrs” (Hockey & James, 1995, p. 141)

13. Recognition of the social body • Our observations: • Person vs Pathology Perspectives • Social Status of “Elderly Person” • Task and Time Focus vs. Nurturing and Enabling • Important to credit staff efforts to challenge these culturally grounded constructions

14. The Political Body • Refers “to the regulation, surveillance and control of bodies (individual and collective) in reproduction and sexuality, in work and leisure, in sickness and other forms of deviance and human difference” (Scheper-Hughes and Lock, 1987, pp. 7-8). • Differences in cognitive status “justify” containment of seniors with dementia in secure units.

15. Under-resourcing of LTC “Government and administrative inattention to issues of sufficient funding for staff, relationship needs and continuity of care for seniors threatened to undermine residents' experiences of meaning, as well as any potential benefits from facilities and program improvements” (Coughlan and Ward, 2006, p. 391).

16. Systemic constraints • Use of casual staff usually not have ongoing relationships with residents • Sick leave is frequently sought as a means of offsetting work stress • Work stress → emotional withdrawal by staff → objectification & task focus • Need for policies and procedures that promote person enablement

17. Intersecting bodies IndividualBody Social Body Political Body

18. References Cited (1) Brooker, D. (2005). Dementia care mapping: A review of the research literature. The Gerontologist, 45 Spec No 1(1), 11-18. Coughlan, R., & Ward, L. (2006). Experiences of recently relocated residents of a long-term care facility in Ontario: Assessing quality qualitatively. International journal of nursing studies, Hockey, J. & James, A. (1995), Back to Our Futures: Imaging Second Childhood. In Featherstone, M. & Wernick, A. (Eds.), Images of Aging: Cultural Representations of Later Life. Pp. 135-48. London; New York: Routledge. Hughes, J., Louw, S., & Sabat, S. R. (2006). Seeing Whole. In Hughes J. C., Louw S. J. and Sabat S. R. (Eds.), Dementia : Mind, meaning, and the person. Pp. 1-39. Oxford; Toronto: Oxford University Press. Kaufman, S.R. (1986). The Ageless Self: Sources of Meaning in Late Life. Madison, Wisconsin: University of Wisconsin Press. Kendell, R. E. (2001). The distinction between mental and physical illness. The British journal of psychiatry : the journal of mental science, 178, 490-493.

19. References Cited (2) Kendler, K. S. (2001). A psychiatric dialogue on the mind-body problem. The American Journal of Psychiatry, 158(7), 989-1000. Kirmayer, L.J. (1992). The Body’s Insistence on Meaning: Metaphor as Presentation and Representation in Illness Experience. Medical Anthropology Quarterly 6 (4):323-46. Morgan, D.G., & Stewart, N.J. (1997). The importance of the social environment in Dementia care. Western Journal of Nursing Research, 19(6), 740-761. Phinney, A., & Chesla, C. A. (2003). The lived body in dementia. Journal of Aging Studies, 17(3), 283-299. Scheper-Hughes, N., & Lock, M. M. (1987). The mindful body: A prolegomenon to future work in medical anthropology. Medical anthropology quarterly, 1(1), 6-41. Synnott, A. (1992). Tomb, Temple, Machine and the Self: The Social Construction of the Body. British Journal of Sociology 43 (1):79-110.

20. Contact skoehn@providencehealth.bc.ca Presentation available at www.centreforhealthyaging.ca Thank you! E-mail & Web