Dr Fiona Kelly Lecture in dementia studies School of Applied Social Science fiona.kelly@stir.ac.uk
Introduce myself! Talk about some of the challenges and joys of working with people dementia. Discuss how my research experiences have informed my theoretical thinking.
Ooh Strawberries! a gift of beetroot and warmth: The joys of working with people with dementia
The chaos and pleasures of focus groups
We have a great banter. When Nora is like this, I can see the young woman in her: flirtatious, funny, light-heartedThe mood is sustained for a few more minutes and it is a joy to be a part of. Soon they are away down the corridor again and the moment is gone.
(Kelly, 2007)
Self 2: Ones physical, mental or emotional characteristics and attributes, and also ones beliefs and desires about them. Self 3: The publicly presented aspect of ourselves; the roles we take on and the appropriateness with which we behave in social situations.
Non-recognition of self
Our identity is partly shaped by recognition or its absence, often by the misrecognition of others, and so a person or group of people can suffer real damage, real distortion, if the people or society around them mirror back to them a confining or demeaning or contemptible picture of themselves. Non-recognition or misrecognition can inflict harm, can be a form of oppression, imprisoning someone in a false, distorted and reduced mode of being. Taylor (1994: 25),
An empty shell? We all believe the toxic lie of dementia; that the mind is absent and the body is an empty shell. Our sense of self is shattered with this new label of dementia. Who am I, if I can no longer be a valued member of society? (Bryden, 2005: 156)
Alternative approach empathically reflect on what we share in common Empathy in care work requires being sensitive to patients sense of vulnerability (Vanlaere et al., 2010). Core me (Self 1) Fear (Self 1) Corporeality (Self 2) Characteristics (Self 2) Abilities (Self 2) Loneliness (Self 3) Relationships and roles (Self 3)
Two female careworkers manoeuvred, rolled, pulled and pushed her without speaking to her while she cried out in distress (Self 1,3)
I can empathise with her fear at being handled roughly, without warning or explanation and with her attempts to make eye contact with the two female careworkers perhaps seeking solidarity with them as fellow women (Self 1,3) Nora has a lovely interaction with a student nurse and her neighbour when they compare the warmth of their hands. There is lots of engagement and smiling (Self 2)
Next steps
Develop a meaningful practice enhancing intervention. Test, disseminate and roll out nationally.
References
Bennett, G., Kingston, P. and Penhale, P. (1997) The Dimensions of Elder Abuse: Perspectives for Practitioners, London, Macmillan Press. Bryden, C. (2005), Dancing with Dementia, London: Jessica Kingsley Publishers. Davis, D. (2004) Dementia: sociological and philosophical constructions, Social Science & Medicine, 58:369-378. Kelly, F. (2007) Well-being and expression of self in dementia: interactions in long-term wards and creative sessions. University of stirling, Ph.D Thesis Kelly, F. (2013) Bodywork in dementia care: recognising the commmonalities of selfhood to facilitate respectful care in institutional settings, Ageing & Society Doi: 10.1017/S0144686X 13000093 Kontos, P. and Naglie, G. (2007) Bridging theory and practice: imagination, the body, and person-centred dementia. Dementia, 6, 4, 549-69. Sabat, S. (2001) The Experience of Alzheimers Disease: Life Through a Tangled Veil. Blackwell Publishers, Oxford. Sweeting, H. and Gilhooly, M. (1997) Dementia and the phenomenon of social death, Sociology of Health & Illness, 19(1):93-117. Taylor, C. (1994), The politics of recognition, in A. Gutmann (ed.), Multiculturalism: Examining the Politics of Recognition, Princeton, NJ: Princeton University Press. Vanlaere, L., Coucke, T. and Gastmans, C. (2010) Experiental learning of empathy in a careethics lab. Nursing Ethics, 17, 3, 325-36.