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A researchers journey: practical insights and theoretical developments from researching and working with people with dementia

Dr Fiona Kelly Lecture in dementia studies School of Applied Social Science

In this presentation, I will

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.

Challenges of researching with people with dementia

Research participants Convincing ethics committees of the utility and possibility of working with people with dementia Requires excellent communication skills Requires flexibility, patience, sensitivity, compassion Ensuring their voice is heard Research settings Observing poor practice and empathising too much Placing an ethical stance over data collection Negotiating and engaging with stakeholders Remaining non-judgemental Leaving the setting

Ooh Strawberries! a gift of beetroot and warmth: The joys of working with people with dementia
The chaos and pleasures of focus groups

Developing relationships over repeated visits

Experiencing and observing warmth, laughter, hugs, humour, humanity

Expressions of warmth during research. 1

In the evenings, in ward 2, after spending many daytime hours sleeping or sitting passively, Kate often became more alert. She would walk around the sitting room trying to pull women by their hands from their chairs. I interpreted these actions as Kate seeking social contact. There came a subtle change in her behaviour on my last days map, when Hannah was very distressed. Kates action seemed to reflect awareness of Hannahs distress and a concern for her well-being. Here, from my fieldnotes:
Kate walks over to Hannah and takes her hand and holds it, Hannah looks up at her and smiles faintly.
(Kelly, 2007)

Expressions of warmth during research. 2

In an encounter with Fred; with whom she had a special friendship, I sensed the Self 3 that Nora was and could be again, if given recognition:

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)

Theoretical approach: enduring selfhood

Enduring selfhood (Sabat, 2001)

Self 1: I, me, myself, mine or ours.

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.

Recognising and supporting selfhood in dementia care. 1

The student nurse says: Bye, bye, Nora. (Self 1) 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) You like colours, Hannah. Hannah nods and smiles. Hannahs a great painter she says and Hannah nods and smiles. The care assistant tells me that Hannah has drawn some great pictures of the staff Hannah continues to nod and smile and gesticulate with her hands. (Self 2) Hannahs a great painter. (Self 3) (Kelly, 2007)

Recognising and supporting selfhood in dementia care. 2

She is so fragile, but she still manages to paint on the silk and to smile, gesticulate and mime like the old Hannah; although with less vigour than usual. When she starts to paint, she does so with lots of support and encouragement from Eddie (OT). Occasionally she becomes worried, but Eddie steps in to reassure her. She relaxes and engages with Eddie and smiles. (Self 2, 3) They (2 female participants) agree and join her (care assistant) at the trolley; piled high with sheets and towels. They go to the laundry cupboard to help stack the shelves. Then they leave the ward with a folded cardboard box each for uplift. They return animated, with eyes shining. They remain in this state of well-being for the next ten minutes while they continue to help. When they return to their chairs, they talk with each other about the work they have done. (Self 3) (Kelly, 2007)

Not recognising selfhood in dementia care. 1

Footage gathered over two nights by a concerned family member revealed a woman with dementia being harshly, mockingly washed in her bed, by a male careworker, without care for her dignity, accompanied by repeated inexplicable slaps as she cried out in distress. (Self 1,3) The final assault occurred when he stood over her at the top of the bed and pulled her under her armpits to the top of the bed, hitting her head off the head of the bed in the process. With one final slap on her face and bare skin, he left the room. (Self 1,3) In other scenes, two female careworkers manoeuvred, rolled, pulled and pushed her without speaking to her while she cried out in distress. (Self 1). (Kelly, 2013)

Not recognising selfhood in dementia care. 2

15.00 I look around to make sure that every one is all right and I spot one of the men lying on the floor. I go to check on him and see that he is sleeping . . . I go to look for someone, but they are all on their break . . . the break goes on and on. I catch a care assistant at about 15.30, and I tell her that the man is lying on the floor sleeping. She replies that they know he is on the floor and that they are leaving him there for now, because at least hes not getting up to anything. . . After nearly 1.5 hours on the floor, the staff finally attend to him . . (Self 3) (Kelly, 2007) The staff nurse comes over to check on a man who is sleeping soundly in a reclining chair. He tells me he is a bit concerned because he sedated him after lunch because he was getting worked up trying to take his shirt off and getting aggressive, and the medication seems to have hit him harder than he had anticipated, but hes still alive he remarks as he walks away. (Self 2, 3) (Kelly, 2007)

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),

Consequences of assuming loss of selfhood as dementia progresses

Vegetable An empty shell No longer the person he/she was Social death (Sweeting and Gilhooly, 1997) Family should be allowed mourn the person before he/she dies (Davis, 2004) Assuming a loss of selfhood with advanced dementia implies that there is no affront to human dignity in treating those who are cognitively impaired as though they are unable to experience humiliation. (Kontos and Naglie, 2007: 551).

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)

Institutional abuse as barrier to good practice

Poor staff/patient ratio Excessive, unquestioned use of restraint Large, unhomely wards with poor lighting Poor catering, little choice Meals to suit needs of institution Lack of mental stimulation Lack of privacy Generalised care Inadequate staff training Poor workplace morale (Bennett et al., 1997)

Difficulty with a person-centred approach

Focus on seeing the individual with unique needs, wishes, likes, dislikes, biographies .. What if I have severe cognitive impairment and been admitted to hospital? What if I am a new or agency carer in a care home and do not know anything about the person, or very little?

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)

Reflecting on selfhood in practice

Non-recognition of selfhood Recognising commonality

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.

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.

Thank you for listening. Any questions?

Photographs by Tony Marsh and Google Tony Marsh Photography