Harding, Emma;
(2020)
'I'm still that person in there but I can't make it work': capturing the day-to-day impacts of a diagnosis of posterior cortical atrophy.
Doctoral thesis (Ph.D), UCL (University College London).
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Abstract
Supporting people to age in place and ensuring good quality of life for people living with dementia (PLWD) are public health priorities, but little is known about the needs and experiences of community-dwelling people living with rarer dementias. Posterior cortical atrophy (PCA) is a rare form of dementia which predominantly affects visual processing, and is currently mostly understood from a biomedical perspective. Theoretically underpinned by the Stress Process Model, in phase I of this PhD study I sought to better understand the lived experience of a diagnosis of PCA using dyadic interviews. The interviews revealed a convoluted diagnostic journey, difficulties in interacting with the physical environment (e.g. locating objects) and wide-ranging psychosocial ramifications (e.g. interdependence), but also the resourcefulness dyads were showing in responding to these difficulties, and the complexity of the relational contexts this stress process was happening within. I sought to better understand the complexity of these intersecting physical and psychosocial environments in phase II with a series of all-day home-based observations of people living with PCA and typical, memory-led Alzheimer’s disease. This phase was theoretically underpinned by relational citizenship and used an embedded case study design with focussed ethnographic methods (including participant observation, conversational interviews, field notes and video recording). Participants’ ways of being in, engaging with, and acting on the world were challenged differentially by diagnosis and according to disease stage. Despite this, all participants were finding ways to continue engaging with their environments and in meaning-making via various activities. The main findings are encapsulated in three themes: (1) The fun and the function of activities; (2) Reciprocities of care, and (3) The constitution and continuity of (a changing) self. Implications for research, theory and practice are discussed, relating to meaningful versus measurable activities, the acknowledgement of diagnostic differences, and enduring expressions of selfhood for PLWD.
| Type: | Thesis (Doctoral) |
|---|---|
| Qualification: | Ph.D |
| Title: | 'I'm still that person in there but I can't make it work': capturing the day-to-day impacts of a diagnosis of posterior cortical atrophy |
| Event: | UCL (University College London) |
| Open access status: | An open access version is available from UCL Discovery |
| Language: | English |
| Additional information: | Copyright © The Author 2020. Original content in this thesis is licensed under the terms of the Creative Commons Attribution 4.0 International (CC BY 4.0) Licence (https://creativecommons.org/licenses/by/4.0/). Any third-party copyright material present remains the property of its respective owner(s) and is licensed under its existing terms. Access may initially be restricted at the author’s request. |
| Keywords: | Dementia, Qualitative methods, Posterior cortical atrophy, Mixed methods, Focused ethnography, Qualitative case study, Lived experience |
| UCL classification: | UCL UCL > Provost and Vice Provost Offices UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences > UCL Queen Square Institute of Neurology UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences > UCL Queen Square Institute of Neurology > Neurodegenerative Diseases |
| URI: | https://discovery-pp.ucl.ac.uk/id/eprint/10098712 |
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