First Dementia Lifeworlds Symposium - Wednesday 29th November 2024

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.

Dementia Lifeworlds symposium (ii) “The Social Lifeworld and Dementia” - Wednesday March 5^th 2025

School of Therapies boardroom, room 2.38 UCC Brookfield Health Sciences 14.00-18.00.

 Schedule

• 14.00 – 14.15: Introductions & re-introductions (just going around the table, saying who we are and where we’re coming from in terms of our interests & backgrounds)
• 14.15 – 14.35: Kieran Keohane. The social ‘Lifeworld’ and dementia. Casework:  The case of ‘Auguste D’, (who is ‘patient zero’ in the genealogy of Alzheimer’s) and The ‘Nun Study’, (the first and best known epidemiological study of Alzheimer’s).
• 14.35 – 15.00: Nicole Muller ‘Conversation as cognition, and ‘communication health’
• 15.00- 15.30 Roundtable discussion on the ideas presented by Kieran and Nicole,
• 15.30: Tea, coffee and continuing conversation: A pause, and a change of pace in conversation, to turn towards some future prospects and horizons.
• 15.45 - & onwards.  To continue conversation, and with a view to next steps, towards a horizon of research, funding prospects and publishing
• 15.45- 16.00 Emma G.: Turning towards possible future research horizons,  Emma Gleeson from the School of Clinical Therapies, who has recently completed a PhD dissertation entitled “Working with Older Adults Transitioning from Living Independently to Living with Support: Healthcare Professionals' Roles, Perspectives and Lived Experiences.”

The focus of this workshop was to work up  the theme of

• The social ‘lifeworld’ and dementia.

 

Dementia Lifeworlds: Symposium (iii)

“Conversations towards Death: Making an Advance Care Directive as a Rite of Passage for End of Life Transition”

• Mary Donnelly (Law, UCC)
• Peter Kearney (Medicine, UCC)
• Caroline Dalton (Nursing, UCC)
• Valerie Smith (Hospice Foundation)
• Shaun O’Keefe (National Consent Advisory Group)

Chair & discussant: Joanna Latimer (York, and Visiting Professor UCC)

 Wednesday 26^th November, 2pm to 6pm, College Seminar Room

 

The tacit presence of mortality is a limit horizon that gives form and meaning to life (Georg Simmel, 1918, The View of Life)

Ours is a death-denying society. But death is inevitable, and we must face the question of how to deal with it. Coming to terms with our own finiteness helps us discover life's true meaning. Why do we treat death as a taboo? What are the sources of our fears? How do we express our grief, and how do we accept the death of a person close to us? How can we prepare for our own death? (Elizabeth Kubler Ross, 1997 On Death and Dying)

The ritual formulae of the old society, which made it easier to cope with critical life-situations … sound stale and insincere to many young people; new rituals reflecting the current standard of feeling and behaviour, which might make it easier to cope with the recurrent crises in life, do not yet exist.(Norbert Elias, The Loneliness of the Dying, 1985)

Death drives life by inducing us to make something out of life, that the limitation that death brings to mind invites us to reflect upon how we make life matter or give it value (Alan Blum 2014 The Dying Body as a Lived Experience)

End of life expertise and decision-making are becoming increasingly urgent in the context of ageing populations especially increasing prevalence of dementia type illnesses putting huge strain on individuals, economies, families, health and social care together with the recent legalization of advanced care directives and their introduction into health and elderly care.  At the same time there is little research on how end-of-life decision-making and/or advanced care directives are accomplished in practice. 

This exploratory study focusses on end-of life decision-making and the production of Advanced Healthcare Directives (AHDs) with people affected by dementia.  Drawing on an ethnographic multi-method approach previously developed and applied across many different health care contexts (Latimer) it will identify how, when and where end-of-life decisions and advanced care directives are being initiated, and will examine the processes, practices and actors involved in their production.

Focusing in particular on the communicative practices involved in making Advance Healthcare Directives our study is concerned with how and when the communicative health and abilities of older people affected by dementia are accounted for and addressed in the production of end-of-life care decisions and advanced care directives, particularly in terms of the incorporation of multi-modal forms of communication (Muller, Gleeson). The study is situated within the discursive frames, contexts, fields and tensions within which the communicative work of making Advance Healthcare Directives take place, looking at organizational and legal frameworks [e.g. rights to privacy vs needs to communicate & mediate; legal requirements to impart certain information / contents; assumptions of ‘competence’ (or not)]; the  social and cultural meanings and structures that facilitate or limit interactions and practices in this context -health policies, gender relations, faith, ethnicity, language background, relationships of family and friends, and the lifeworld contexts where biographies and histories intersect. 

The study will work closely with health and care practitioners and the aim is to support their development of inclusive, safe and efficacious approaches to end-of-of-life decision-making and the production of advanced care directives with older people with dementia.

In Ireland, the Assisted Decision-Making (Capacity) Act 2015 came into force in April 2023. “An Advance Healthcare Directive (AHD) informs family, friends and healthcare workers of a person’s wishes for their treatment in the event one can no longer communicate them oneself. It is a legally binding document where the person records what healthcare treatments they would not like in the future and the circumstances for refusing them. An AHD relates specifically to one’s healthcare, it is not a will or an enduring power of attorney.”

To realize The Assisted Decision-Making (Capacity) Act, to translate the Act into practice entails the development of new roles at the point of care delivery, in the form of people who can guide and support, enable and assist people to make decisions. These new roles of people who help the person to make an AHDs are called  ‘Supporters.’

Research theme for a Symposium:

Making an Advance Healthcare Directive is a process of talking about limits, a dialogical engagement with death. This pilot exploratory research will focus on ‘Supporters’  assisting people who are affected by dementia to make their AHDs. 

• Who presently perform the roles of ‘Supporters’?
• What does the work of Supporters entail?
• How is ‘supporting’ done in practice?
• What does ‘supporting’ consist of in the communicative process?
• How is the role of Supporter performed, accomplished and concluded? What is the structure of the process -the social choreography and the dramaturgy of making an AHD?
• What education / training and ongoing support / continuing professional development do ‘Supporters’ receive?
• Can we contribute to developing protocols & best practices that would help professional carers, e.g. Doctors, Nurses, Speech & Language & Occupational Therapists, Counsellors, Chaplains, Care-home Managers, Care Assistants and all those people whose work and concern involves ‘person centred care’ for people living with dementia and facing into death to better structure the experience of people when they are making Advance Healthcare Directives?

Theoretical -conceptual framework

As an initial theoretical-conceptual framework with which we propose to formulate the work of guiding conversations towards the end of life and unto death as a structured ‘rite of passage.’ A Rite of Passage is an anthropological, historical and social universal. In all of the world’s cultures rites of passage are rituals and ceremonies associated with important transitions in the life-course, such as birth, adolescence, marriage, and death. These rituals and ceremonies marking important life-cycle transitions are organized and structured in a series of steps progressing from a ‘preliminary’ stage of separation, through a ‘liminal’ stage of transition, to a closing stage of ‘re-integration’, and with the whole rite of passage overseen and guided by ‘masters / mistresses of ceremonies.’ The crucial, decisive  stage of a rite of passage is the ‘liminal’ stage, in which ‘limin’ means both ‘threshold’ and ‘limit.’ In the liminal stage the person’s previous life and present status is brought to the fore as a threshold, a place and time from which to look back and to see beyond, in this case to look to the limit horizon of one’s death, and in the dialogical process of talking about and reflecting on the limit horizon of death thereby making decisions expressed in their Advance Healthcare Directive.

Traditional ritual formulae belonging to pervious historical societies -the Vigil, Last Rites, Extreme Unction have been falling into abeyance, and at the same time, due to improvements in medical care the dying process has been extending, while ‘new rituals that might make it easier to cope with dying do not yet exist’ (Elias 1985). But the difficulty caused by the lacuna in how our culture prepares people for death is also an opportunity, for ‘the limit that death brings to mind invites us to reflect upon how we make life matter or give it value’ (Blum 2014).  One of the  inspirations and models for approaching the task of making Advance Healthcare Directive as rite of passage is Peter Kearney’s (2011) Healing Rites of Passage: Salutogenesis in Serious Fun Camps, London: Routledge. Kearney, a Paediatric Oncologist applies concepts of social drama, ritual, and rites of passage (derived from the anthropology of Arnold van Gennep and Victor Turner) to ethnographic case studies of Barretstown Castle and similar camps for children who’ve experienced life-threatening illness to show how “Serious Fun camps are a kind of redressive machinery that use a rite of passage structure with its sequence of rites of separation, transition and re-integration to address the social order associated with potentially fatal childhood conditions ... Rites of passage are held in response to great life transitions, such as birth, marriage and death: they are ‘life crisis ceremonies’.

Following Kearney, but in this case looking towards the other end of the life course and substituting ‘dementia’ for ‘childhood cancer’ we can formulate the ‘social drama’ of dementia in terms of how it throws the lifeworld into crisis, and as a working hypothesis we propose to consider the process of how making an AHD can be a redressive-restructuring rite of passage. Like a diagnosis of childhood leukaemia  a diagnosis of dementia is invariably ‘shocking and upsetting… moving the person and the family into crisis mode… the experience can ricochet around all household members, with risks of sibling neglect, unemployment, financial repercussions, care burdens and responsibilities and family disruptions…’ Like the social drama associated with leukaemia the social drama instigated by dementia ‘entails a breach in ordinary routines, performances and communicative actions that structure everyday life -the social ecosystem of interpersonal relations and communications, meanings and understandings within which and of which the person experiencing dementia is a member -their lifeworld- is profoundly disrupted and thrown into crisis … The social response to crisis – the ‘redressive machinery’ comes in terms of formal support from professionals and informal support from extended family and friends… the person living with dementia experiences social exclusion, marginalization, stigma … as all of the previously taken-for-granted and reliable structures of their social lifeworld are shaken out of joint a person experiencing dementia  enters a zone of ‘liminality,’ an experience of being ‘betwixt and between’, alternating and fluctuating between being confused, lost and bewildered, and periods of clarity and lucidity and feeling ‘their old self again.’ The experiences of encroaching dementia are ‘disordering’, and ‘rituals are deliberate and organized social responses to recent and historical disturbances. … in this way drama and ritual mediate the disorder - order dynamic of society. Whereas the drama associated with the crisis -of dementia in this case disrupt the lifeworld, ritual is the redressive social machinery that can work to re-order and re-structure the disrupted lifeworld.    

Structured Stages of Rite of Passage in Making an Advance Healthcare Directive:

The arc of transition from a person’s initial experiences and diagnosis of a dementia type condition to their eventual death can span typically, 3 to 10 years. William Osler, ‘the father of modern medicine’ famously called pneumonia ‘the old man’s friend’, meaning that pneumonia is a relatively peaceful way for elderly people with chronic illnesses to die, sparing them a prolonged period of decay and suffering. But of course pneumonia is now easily and successfully treated, and so the passage and progression from dementia to eventual death is a long arc of transition that involves several moments and periods of crisis and stages of separation, liminality and reintegration corresponding with the progress of a  person’s dementia -transitions from the person’s living independently in their own home, progressing through supported living of various degrees, to ultimately (usually) transition into a long term care home. This long arc of successive and progressive crises and transitions may entail a great variety of anxieties, fears, terrors and family troubles, but also, as well, these transitions can have positive and joyful dimensions, such as relief from loneliness and insecurity and forming new friendships and camaraderie with a cohort of people sharing their new common situation. And especially, as Blum suggests, these experiences of liminality and crises provide vital opportunities for reflection and discourse -for the person, their family and friends ‘to reflect on what makes life matter and to give it value’; to discuss, to negotiate, to come to terms and hopefully put to rest the troubles and difficulties that invariably belong to the life-course and family history of every person.  Bearing all of this in mind, and within this general arc of crises and transitions in the progression of dementia we focus on the performative and communicative work of making an Advance Healthcare Directive.    

 

• Preliminary stage [separation, preparation, initiation, beginning the conversation) …how, and by whom is making an Advance Healthcare Directive broached - introduced as a conversation topic with the person experiencing dementia? When and where is the conversation convened, time & place / location and setting/ contexts? Who will be the interlocutors in the conversation -the person who is affected with dementia; the Supporter / Intervener; other persons concerned -next of kin, spouse, children, close friends…? (Also, who is not to be involved) -How are parameters / limits of what will become the best approximation of an what is called, variously in philosophy and in jurisprudence, the ‘conditions of ideal speech’, circumscribing the ‘interpretive horizon / hermeneutic circle’, establishing ‘reflective equilibrium’ amongst the interlocutors in the AHD conversation? What are the challenges and considerations of this preliminary stage, e.g. broaching what is for many a topic that is not only sensitive but fearful and taboo; mapping and negotiating complex and sometimes difficult family landscapes and troubled life stories and relationships dynamics…?

Liminal stage of transition [crossing the threshold, talking about the limit] … entering into and working through the substantive core of the conversation about the end of one’s life, facing into / up to one’s own death – and thereby, as Blum says making good of the way in which “death drives life by inducing us to make something out of life, that the limit that death brings to mind invites us to reflect upon how we make life matter and give it value” (2014,2). A delicate, difficult and painful communicative process, but one of tremendous vital significance! How is this conversation conducted? How is trust built, developed and maintained between the person affected by dementia and the ‘Supporter – Intervener,’ and with other persons in the conversation? How does the ‘Supporter – Intervener’ lead and guide the conversation? In this talking about death what forms of words does the supporter-intervener use? (are there formulae/ routines / sequences / iterations & reiterations, of conversational guides, prompts…; how is the shift from euphemism – talk of ‘passing’ etc., to direct language about ‘dying’ and ‘death’? What about tones of voice, rhythms, cadences of speaking; and non-verbal communications -face-work performances, demeanours, gestures, animations..?  How does the supporter-intervener keep the conversation on-track, focused, elevated, animated, moving forwards and moving towards the horizon and goal of the person affected by dementia making their Advance Healthcare Directive? What can go wrong during this liminal stage (e.g. the conversation loses focus, goes off track; the person making the AHD becomes upset / tired/ confused/ aphasic; the person making the AHD forgets the conversation… How does the Supporter -Intervener pick up again, recover and repair lapses and lacunae in the conversation? Are there phases within the conversation – is the conversation plural / are there multiple conversations, over several days…? How does the Supporter-Intervenor handle recollections, reminders, and changes-of-mind? What challenges / risks / problems are associated with working through the liminal / difficult / tricky conversation…?( e.g. other persons’ influences / interferences with the thinking / wishes of the person with dementia who is making the AHD -perhaps with material interests or other quite opaque agendas e.g. issues that are anchored in complex & troubled family histories and systems dynamics…) How does the Supporter-Intervener negotiate & handle such external [perhaps unwelcome / unhelpful / problematic] influences?  

Post-liminal stage of re-integration: [concluding and closing the conversation] …reaggregation, re-incorporation, confirmation and aftercare. How does the Supporter- Intervener draw the conversation beyond concluding onto achieving closure, giving form to the process, by circumscribing new limits, completing the work of making an Advance Healthcare Directive, with the formal, symbolically (and legally!) important signing of the documents? Usually this concluding re-integrating stage in a rite of passage is marked by collective celebration of status-elevation, marking an important achievement -more difficult in this instance for it is not a recovery into a healthy and flourishing future, but rather unto death… Perhaps -in this case the re-integration and status elevation can be framed as the achievement of ‘having put one’s affairs in order’; with assurance and re-assurances of on-going support. The goal-horizon (the measure for evaluation)  would be perhaps ‘serenity’, of guiding, supporting and enabling the person experiencing dementia towards a new, better, higher state of mind, with less anxiety and greater calm; towards a point of settling, where, as Wittgenstein says troubled and troubling ‘thoughts come to rest.’   

How is this third, re-integrating stage of the rite of passage to be accomplished..? An important consideration throughout is that rites of passage are, by definition social i.e. they are collective experiences. Persons undergoing a rite of passage usually do so as a member of a cohort… a collective group who share a common situation and status as ‘initiands’- ‘elderly, with dementia’ as an undifferentiated category, from which they are at the appropriate moment separated from the cohort to go through the ritual process as differentiated, unique individuals -the conversation making the Advance Healthcare Directive is, of course, a strictly private and confidential conversation wherein the contents of that conversation is protected, restricted, bonded, solemn, secret (as evidenced in the common etymology of ‘secret’ and ‘sacred’). Talking about death and the AHD conversation concerns the most personal, precious and thus secret/sacred wishes of the person concerned who is entrusting another person to take care of their last and final decisions over their precious life, forming and formalizing a sacred bond in which the person expresses and gives over their  authority as a unique, autonomous sovereign person, granting and entrusting the authority of their autonomous personhood to another: Can this solemn moment of granting of authority be ceremonialized? And having marked it symbolically ceremoniously can it  be followed by a rite of celebratory social reintegration [in the anthropological record this very often takes the form of a communal meal….]    

Supporters- Interveners as ‘Masters & Mistresses of Ceremonies’.

In the historical-cultural social-anthropological record all rites of passage /  rituals / ceremonies are overseen and conducted by people who play the specialized role of ‘Master / Mistress of Ceremonies.’ Masters of Ceremonies -‘M.C.’s, are often Mistresses of Ceremonies, especially in care settings, and even more so in elderly care settings, where there is a pronounced gendered division of labour  -care givers are predominantly women in a health system / medicine that is otherwise overwhelmingly still patriarchal / masculinist at management and professional institutional / structural terms.  

The liminal stage of a rite of passage always, even by definition, entails a (quite literally) painful, unsettling/ frightening experience -it involves an encounter with danger, even death… [the etymology of ‘experience’ is ‘per’ from Sanskrit, from whence ‘peril’][1] for it brings death into view; it entails the ‘death’ of a former identity, and in the case of making one’s Advance Healthcare Directive it entails a talking about, a facing up to and unto one’s own actual death. It is precisely because of this that rites of passage are so important, quite literally ’vital’ matters of life and death are at stake; and the MC must carefully manage what is a ‘stamping experience’, a ‘life changing’ moment. Transitions from home to care, and towards making an Advance Healthcare Directive typically involve such ‘deadly serious’ moments, for e.g. ‘the fall’ (sometimes the second fall) with a fractured hip, lying on the floor, the frightened elderly person on the trolley for 18 hours in the overcrowded A&E etc.; or, in the case of Alzheimer’s and dementia type conditions, the moment of Alzheimer’s diagnosis, or / and the precipitating experiences and events -going astray, wandering, aphasias leading to acute embarrassment or / and endangerment.  These are ‘stamping experiences’, life-changing moments when the elderly person experiencing dementia comes face to face with their vulnerability and abject helplessness in the face of Death; and not mortality in the abstract and remote sense, but of their own personal and imminent death. Eventually they may face into transition from home to a long term care facility, which every elderly, vulnerable person knows is the ‘departure lounge’, ‘God’s waiting room.’ It is because of these features, that it is a liminal, threshold moment of actual, real ‘existential crisis’- that the role of the Mistress of Ceremonies is so absolutely important, and that the role of Mistress of Ceremonies it is more than just a skilled job or even a profession; the essential quality in being an Supporter-Intervener as Mistress of Ceremonies is that it is akin to a ‘vocation’. 

The threshold of liminality is also an intense site of vulnerability when the person may become exposed to various powers and influences. The moment of vulnerability, power and danger inherent in liminality and transition experiences further underlines the importance of the Mistress / Master of Ceremonies, namely the crucial role of the MC in safeguarding the person from the influence of ‘Trickster’. In the anthropological record, across all histories and cultures, people who are transitioning through the liminal stage of a rite of passage are vulnerable to the influence of malign spirits -represented, variously by Loki (Scandinavia) Anansi (West Africa) Coyote (Aboriginal Americas) Monkey (Asia) Hermes (Gr) Mercury (Rm) amongst many others, including our own Fairies and Leprechauns -literally every culture has such trickster figures. Trickster is a collective representation, a metaphor for the unseen powers & forces that may emerge in liminal circumstances causing trouble and harm, and one of the most important functions of the MC is to be on the lookout for and to protect the vulnerable person from malign trickster influences. In the case of a person with dementia making an AHD trickster typically manifests in the form of mercurial influences –Like Hermes and other Tricksters, Mercury’s name, which signifies merchandise and currency stands for the undercurrents associated with other parties’ interests in money, property, inheritance and the Will -‘financial abuse’ of some form, subtle and gross is one of the most common risks associated with ageing & dementia. Also, and often entangled together, are other parties’ concerns about the financial and emotional burdens of caring for sometimes difficult, demanding, dementing persons. All of these troubling issues are enmeshed in family histories and psychodynamics, ambivalences of attachment and estrangement, resentment and envy, love as well as hatred, conscious as well as opaque and unconscious motive powers that may be animating and influencing the communicative work of making an Advance Healthcare Directive: there is always ‘something more in the room’, ‘something else’ that is not being said, not being spoken about, but something that ‘speaks’ nonetheless; and while doing their communicative work the Supporter / Intervener as M.C. must be attuned to such ‘trickster’ voices and influences and be skilled in how to deal with them. In this context we need to articulate the process of making an AHD and the role of the Supporter / Intervener as MC in terms of an active collaborative inclusive co-production.                 

• Historically, the essential role of Masters and Mistresses of Ceremonies used to be a ‘Confessor’ -Priest, Rabbi, Imam, Shaman; Matriarch, Wise-Woman, Midwife. The role of MC presently is reprised by the ‘Supporters’ / ‘Interveners’ formally, and (informally) by Doulas and ‘Death Cafés’.

On this aspect of the research theme we note initially the significance of the present demographic composition of the staff of nursing homes and LTC facilities – secular-rational management and medical clinicians -predominantly still Caucasian, post-Christian, though this composition is changing… the core staff are, increasingly, and especially so in LTC settings, South Asian (from India, Pakistan, Bangladesh; Philippines, Malaysia) and Eastern European (Poland, Hungary, Baltics…). These people who do so much of the practice in ‘patient centred care’ -the ‘heavy lifting’ of feeding, dressing, changing, mobilizing… these people with direct, physical and emotional contact with persons experiencing the liminality of dementia, are experiencing liminality and undergoing transition themselves -as immigrants, migrant labourers, displaced, living between disrupted and disjointed cultures and languages -they themselves live in liminal lifeworlds.  Perhaps this makes such people already, informally, well-suited to performing the role of potential MCs. Could this informal ‘suitableness’ be ‘formally’ developed and institutionalized as a distinctive role through training and CPD?   

• Mary Donnelly (Law, UCC)
• Shaun O’Keefe (National Consent Advisory Group)
• Caroline Dalton (Nursing, UCC)
• Valerie Smith (Hospice Foundation)
• Peter Kearney (Medicine, UCC)

Chair & discussant: Joanna Latimer (York, and Visiting Professor UCC)

MARY DONNELLY is a Professor of the School of Law at University College Cork.

She researches in the fields of mental capacity/mental health/health law. She is the joint chair of the HSE National Consent Advisory Group and the HSE Assisted Decision-Making Commencement Group and was Chair of the Multidisciplinary Working Group on Advance Healthcare Directives.

SHAUN O’KEEFE is a Consultant Geriatrician and Physician at University Hospital Galway, and an Honorary professor of Medicine at NUIGalway. He is a member of the HSE multidisciplinary working group on implementing the Assisted Decision Making (Capacity) Act, including AHDs, and Co-Chair of the HSE National Consent Advisory Group. His research interests include cognitive impairment, and ethical issues in the care of older people. 

CAROLINE DALTON is a lecturer in the School of Nursing in University College Cork. She is a registered intellectual disability nurse whose research interests relate to supporting individuals with an intellectual disability, dementia and acquired brain injury. Dr Dalton is a member of the College of Medicine and Health Inclusion Health Research group and is an active member of the Healthcare Ethics and End of Life Care research cluster.

VALERIE SMITH is Irish Hospice Foundation’s Public Engagement Lead. She manages Think Ahead, a national advance care planning programme, and Time to Talk, an national initiative to encourage and support conversations on death and grief. With a background in community organizing, death midwifery, comparative spiritualities, and creative arts practices, Valerie specializes in community engagement and systems building, bridging big picture thinking with accessible tools, events, supports and resources. 

PETER J. KEARNEY is Emeritus Professor of Paediatrics and Occasional Lecturer in Sociology at University College Cork, Ireland. He is author of Healing Rites of Passage: Salutogenesis in Serious Fun Camps. London: Routledge 2020.  https://ucc-ie.academia.edu/PeterKearney 

JOANNA LATIMER  is Emerita Professor of Sociology at University of York, UK., where she is a world leading researcher in the field of the Sociology of health and care. Prof Latimer is Visiting Professor at UCC. Joanna Latimer’s theoretical and empirical research presently focusses on ageing, dementia, and dementia care, topics on which she has published extensively in leading academic journals.

 

[1] Also, Latin ‘experiri’, to try out, but also ‘to undergo’ (hence a deponent verb)? The Germanic equivalents ‘erfahren’, Swedish ‘erfara’ (which include the notion of journeying), also G ‘erleben’, Swedish ‘uppleva’ (with ‘live’ as the root).