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Dementia Lifeworlds
Project Overview
Dementia is one of the greatest societal-health challenges of the coming decades. However, the disease model of Alzheimer’s, and of dementia generally, focuses on neurobiological dysfunction and individual pathology, at the expense of wider social and cultural layers of understanding. As the psychiatrist and philosopher, Thomas Fuchs, points out, “persons are not individual monads of consciousness but embodied, living beings... persons do not exist in the singular but only in a common relational space (Fuchs 2021, 4). The ’mind’ for Fuchs, is embedded in the world and in the temporal process of life (2002, 261). What could change in our account of dementia if we were to adopt such a perspective, and examine Alzheimer’s through a transdisciplinary lifeworld lens, including a biographical, relational, socio-cultural analysis in tandem with bioscientific, legal and design thinking?
This project addresses this question at several scales:
- Socially: focusing on the capacity of [auto]biographical ethnographies to co-create and represent dementia lifeworlds.
- Bioscientifcally: focusing on how neurodegeneration impacts and is impacted by social lifeworlds.
- Legally: focusing on how lifeworlds open questions of autonomy, agency, and ‘vulnerability’ beyond the individual.
- Nursing: focusing on dementia as ‘erosion of personhood,’ and ‘person centred care.’
- Architecturally: focusing on how urban and public spaces might make dementia lifeworlds more liveable.
- Therapeutically: focusing on how Speech & Language Therapy, Occupational Therapy, Arts Therapies and Psychotherapy access & engage with dementia lifeworlds.
Dementia Lifeworlds launches with a series of colloquia, led jointly from Collective Social Futures, the Radical Humanities Laboratory and Future Ageing and Brain Science, with partnerships as indicated herein, seeking a new shared space for transdisciplinary dementia research.
Aims & objectives
The aim of this collaboration is re-frame the paradigm within which dementia is perceived & understood, by addressing interlinked research questions:
- What would change about our clinical view of AD and dementia, if we started from the perspective that a person is a psychophysical unity of lived experience, whose bodily sensations, thoughts and expressions are inextricable from their interactions in a shared, intersubjective lifeworld? What new bioscientific paradigms would come into view if, rather than isolating neurobiological function from mind and society, Alzheimer’s disease and dementia were understood in terms of an holistic process of person-formation, within an inclusive view of mind, afforded by a paradigm of neuro-phenomenological embodiment.
- Understanding the ‘lifeworld’ (lebensweld, ‘living environment’) as the everyday world as it is tacitly understood to be valid and meaningful, coherent and consistent, ‘self-evident’ ‘already given’ (Husserl 2012; Schutz 1973), and thereby deeply implicated in processes of ongoing self-narrative, what would open up for accounts of dementia if we focused on facilitating people’s capacity to reflexively comprehend, remember, imagine their sense of self, using creative, ethnographic and auto/biographical narrative methods that synthesize the contents of life?
- Further understanding the lifeworld to be made up of ‘frames’- the unwritten cognitive and moral rules whereby people ‘define the situation,’ organize their experiences, interpret and understand intersubjective actions and events, present their selves convincingly and perform roles effectively in everyday life (Goffman, 1974: 4–8) - what new perspectives would open up for dementia research if we focused on frames becoming disrupted, for example by the speed and dissonance of modern life, by instrumental and impersonal forms of governance, by confusing and poorly designed spaces, or simply by the stress of experiencing dissonance between the social world as we have come to know and value it, and the social world we encounter every day?
Anticipated Outcomes
This project will center a distinctive Futures transdisciplinary perspective of dementia as a meeting of brain and society, thus creating new research space for innovative and sustainable research endeavors at UCC. This will be achieved through
- interdisciplinary colloquia, bringing together local and international experts on questions of dementia, mind and lifeworld;
- co-authored programmatic papers on Dementia Lifeworlds;
- exploring the possibility of a larger-scale joint research project, led by UCC, but drawing in an interdisciplinary network of international collaborators.
Research Significance & Originality
This completely novel and original transdisciplinary reconceptualization of dementia has profound significance for how we think about and plan for our collective social futures, where ageing and dementia are hugely increased; the project approaches this issue with concrete and practical implications across fields of health and social policy, as well as protocols and practices in law and ethics, in nursing, care and clinical therapies, and in architecture & design.
Alzheimer’s and dementia are widely known to be amongst the biggest challenges facing society presently and into the future. The prevailing paradigm about this ‘dementia tsunami’ is to address it as a discrete ‘disease’ suffered by ‘individual’ ‘patients’ to be treated as ‘cases’ in the prevailing paradigm of bio-psychiatry and cognitive psychology. Thus, the challenge of future dementia is not only the experience and incidence of dementia itself; it is also the challenge of expanding our research repertoires for making sense of it, as a holistic, intersubjective and autobiographical phenomenon, experienced by persons whose mind, brain and body are irretrievably entangled in the everyday social production of their lifeworld.
Alzheimer’s dementia, ageing and care for persons experiencing these states, are among the most widely researched topics in the contemporary Social Sciences & Humanities. They are also objects of great research scrutiny in specialized and applied fields in the caring professions, in nursing, in gerontology, in palliative care, in psychology and psychiatry, in mental health and well-being, in social work and in counselling & psychotherapy, and in legal philosophy and ethics. Not only are the subjects of Alzheimer’s, dementia, ageing and elderly care matters of well-established academic as well as public interest but it is an emerging and expanding field, especially as a so-called demographic ‘tsunami’ encroaches, and new forms of dementia emerge, associated with the deteriorating conditions of life in late modernity, as these affect people’s lives and mind, their mental health and well-being.
The challenge, however, is to understand this situation in all is neurobiological, social and administrative complexity – to work across often very different research paradigms; indeed to do so just as dementia itself, as both diagnosis and experience, refuses the neatly separated methodological and conceptual worlds of academic research.
In particular, it is clear that the prevailing bio-psychiatric paradigm, which has only produced symptomatic treatments for dementia, despite decades of research, as well as tens of billions of investment, can no longer proceed alone. This research area is well-positioned for a major paradigm shift. We have a range of interdisciplinary expertise at UCC that is well-placed to make a major contribution to this developing landscape; Dementia Lifeworlds marks a first, critical step in realising that promise.
Project Team & Collaborations
Dementia Lifeworlds is led by a transdisciplinary team that includes members from Collective Social Futures and the Radical Humanities Laboratory, extending to Futures projects in Health Sciences and in Law. Team members have broad & diverse expertise, with a common substantive interest in dementia.
Professor Kieran Keohane Sociology & Criminology. Co-founder of ‘Social Pathologies of Contemporary Civilization’ an international transdisciplinary network and Routledge book series. Publications (relevant to this project) include:
Keohane, K. (2017) “Alzheimer’s disease: a social pathology of contemporary civilization” in Late Modern Subjectivity and its Discontents: Anxiety, Depression and Alzheimer’s Disease as Social Pathologies of Contemporary Civilization. London: Routledge.
Keohane, K. and Grace, V. (2019) “What is Alzheimer’s Disease? The Auguste D case re-opened” Culture Medicine and Psychiatry 43(2): 336-359
Keohane, K. and Balfe, M. (2019) “The Nun Study and Alzheimer’s Disease: Quality of Vocation as a potential protective factor?” Dementia 18(5): 1651-1662
Professor Des Fitzgerald, Radical Humanities Laboratory. Des Fitzgerald is Professor of Medical Humanities and Social Sciences at UCC and a Deputy Director of the RHL. Professor Fitzgerald’s expertise includes the genealogy of neurology and the psychological sciences; the sociology of architecture and design; the city and the sociology of urban mental health. Relevant publications include:
The Urban Brain (Princeton, 2022) and The Living City (Basic Books, 2023).
Professor Maggie O'Neill MRIA. Collective Social Futures. Professor O’Neill is Director of CSF and ISS21; and, specifically relevant to this project, Profesor O’Neill’s expertise includes innovative biographical, cultural and participatory action research methods and participatory arts. She is former chair of the biographical-narratives research network in the European Sociological Association.
Professor Aideen Sullivan, Future Ageing and Brain Science. Professor Sullivan is Director of Future Ageing and Brain Science and Chair of Advanced Pharmacotherapy in the Department of Pharmacology and Therapeutics, School of Medicine. She leads an active research group, engaged with developing novel neuroprotective / disease-modifying therapies for Parkinson's disease, using laboratory models. She also conducts patient-facing research, with a focus on the impacts of lifestyle and environmental factors on quality-of-life, and on motor and non-motor symptoms, in people with Parkinson’s. These projects have strong patient engagement and collaboration, and are often co-designed with people with Parkinson’s and patient advocates.
Professor Deirdre Madden, MRIA. School of Law. Professor Deirdre Madden’s expertise, research interests and are primarily in the area of medical/health law and ethics. Professor Madden has chaired both the National Consent Advisory Group and the National Assisted Decision-Making Steering Group for the HSE; expert ethical analysis and commentary to HIQA; Ethics Advisor and Expert Reviewer on ethics for the European Commission.
Professor Nicola Cornally is currently Vice Dean of Research and Innovation at the Catherine McCauley School of Nursing and Midwifery UCC. Professor Cornally has been PI/Co-PI on multiple nationally funded projects in the area of dementia palliative care, healthcare design for dignified end-of-life care and contemporary end of life issues including advance care planning; funded by the Heath Research Board (HRB), Irish Hospice Foundation (IHF) and GSK. She is currently the national lead on an EU JPND funded project implementing comfort care guidance for family of people with Advanced Dementia.
Emma Gleeson, Lecturer, School of Clinical Therapies. Emma worked as a Senior Speech and Language Therapist and Clinical Coordinator in Primary and Community Care before transitioning to her lecturing role in October 2023. She has fifteen years' experience working with people who have received a diagnosis of neurological or neurodegenerative disease, including people who have a diagnosis of dementia. Her areas of expertise include the management and optimisation of communication, and eating, drinking and other functions for people experiencing dementia & neurodegenerative disease; and virtual / online technology and social interaction in a long-term residential care setting.
Transdisciplinary innovation & collaboration
Dementia Lifeworlds is anchored and led by a transdisciplinary collaboration of UCC Futures areas, with innovations across several dimensions:
- New theoretical (re)conceptualizations across disciplines: e.g. with Peter Whitehouse & Danny George; Lynne Leyton; Thomas Fuchs; Nikolas Rose, Elizabeth Wilson, Margaret Lock, thereby reaching out to colleagues with interests in contemporary social & political thought across CACSSS, including Psychology and Anthropology, but addressed squarely to a problem normally held by Medicine, in deep collaboration with colleagues in those fields.
- Methodological approaches: e.g. with Molly Andrews’ Biographies and Narratives group in the European Sociological Association, thereby reaching out to colleagues interested in innovative social research methods, helping to address ongoing lacunae in the biosciences.
- Legal and ethical debates: about ‘vulnerability’ and ‘autonomy’, ‘consent’ and ‘patient directives’, thereby reaching out to colleagues in Law, Philosophy, medical ethics and palliative care.
- Nursing, and end of life care: Personhood and self-determination in advanced dementia; person-centred and narrative approaches to transitioning -to long term care, and towards end-of-life as rites de passage for people with dementia, thereby bridging nursing, palliative care, and the cultural anthropology of transition rituals.
- Spatial and temporal dimensions: on emergent questions in design, architecture & planning of cities, public spaces, and residential care facilities, thereby reaching out to colleagues in Architecture and Planning, Geography and Engineering, and Public Health, to see how we can think about spatial navigation in dementia as a problem at the intersection of biology, sociology, and design.
- Representations of dementia: on representational questions as dementia is mediated by historical and contemporary culture, from Shakespeare’s Lear and Beckett’s Krapp, to portrayals in film – ‘The Father’, ‘Relic’, ‘Eternal Memory’, -thereby reaching out to colleagues in Literature, Film and Theatre, while also exploring how voice, music, and arts-based therapies as well as cultural and media analysis can contribute to unresolved questions in the life sciences.
Dementia Lifeworlds invites expressions of interest and collaborations in accordance with any of these themes and interests to contact any of the people named above, or directly to Kieran Keohane, k.keohane@ucc.ie
Events
The first Dementia Lifeworlds Symposium took place on Wednesday 29th November at UCC and was an occasion for the research project team to bring ideas on the table, to explore and establish common ground, and to share interests and ideas.
Half day / afternoon, (29th November 2024)
- First: 1.5hr Roundtable -on the ‘Margo case’, with each of the project members addressing / approaching / offering a perspective on this important case from the point of view of our various particular interests. These were brief & succinct contributions from the project team members (DF, MO’N, AS.NC.DM, EG, KK) intended to open up the topic and to stimulate discussion.
- Roundtable discussion (40-45mins).
- Followed by coffee & conversation.
- Second: A presentation / paper / plenary style talk by Joanna Latimer. Joanna Latimer is Professor of Sociology, Science & Technology, and is Director of the Science & Technology Studies Unit (SATSU), University of York, UK. Her research focuses on the cultural, social and existential effects and affects for how science, medicine and healthcare are done. She has published extensively on current social theory. Currently she is writing up her new book, Biopolitics and the Limits to Life: Ageing, Biology and Society in the 21st Century. https://www.uoc.edu/en/news/2015/joanna-latimer https://journals.sagepub.com/doi/full/10.1177/0306312719834069#:~:text=She%20is%20currently%20a%20co,%2C%20University%20of%20York%2C%20UK.
- Followed by dinner, conviviality and further conversation.
Dementia Lifeworlds will organize a follow up Workshop in the New Year to build on the symposium, developing and consolidating the research project.