This is not a report about a typical academic gathering. On 23 and 24 June 2017, a two-hundred-person group consisting of anthropologists, people living with dementia, caregivers, care professionals, medical professionals, managers, artists, and interest group representatives met in Amsterdam to jointly explore dementia and the good life. The conference was organised by PhD candidates from the Long Term Care and Dementia Partnership at the University of Amsterdam (UvA). Since its inception in 2013, the partnership has aimed to be in dialogue and partnership with ‘practice’.[note 1]

During the conference, this partnership was enacted in different forms. Firstly, not only did the PhD candidates present but so did their interlocutors and affiliates. This included interlocutors living with dementia, colleagues doing applied work, care workers, therapists, a theatre maker, a psychiatrist, and university staff involved in the PhD candidates’ projects. Secondly, the presentations did not take the form of lengthy lectures, but served as the framework for three workshop streams, each of which allowed participants to discuss shared concerns. Thirdly, each stream was moderated by one researcher and two care professionals. These moderators, who had co-organised, together with the PhD candidates, monthly dialogue evenings for the past two years,[note 2] presented a summary of the streams’ content to the wider audience in the closing debate. A fourth way in which partnering was practiced is in this report itself. Since this report could not have been written without all of our collective members’ notes, reflections, and presentations, it carries all of our names.

Dementia and the good life

Three workshop streams addressed the conference theme – dementia and the good life[note 3] – from a different angle: 1) good care, 2) dementia lifeworlds, and 3) dementia for carers and in society. Each stream consisted of three sessions spread across two days.

Good care 

What is ‘good care’ according to people living with dementia, their family members, and their care professionals? Is it the same thing for all? What are the tensions, and what can we learn from them?

Annelieke Driessen (UvA), taking a material semiotic approach (for example, Law 2009; Pols 2005, 2011), conceptualised the continuous work of care workers and residents to come to a shared desire in daily care practices as ‘will-work’ (Driessen 2017). In small groups, we discussed how to align the desires of caregivers and family members, and what, for instance, one can do when a long-time vegetarian suddenly loves meatballs. This tension between past and current desires may be emotional for family members. As one dialogue partner aptly put it: ‘The whole sadness of the family can be in that meatball’.[note 4]

Drawing on ethnographic approaches to the study of neoliberal governance, Susanne van den Buuse (UvA) raised questions about good care within the current transformations of the Dutch welfare state. Van den Buuse showed how the key notions of these transformations – ‘self-reliance’ and ‘autonomy’ – do not match the relationality of care, in which care workers, residents, and families work together (Van den Buuse 2016). Participants engaged in redefining autonomy in a way that takes the relationality of care into account.

Hugo van der Wedden (Proeftuin Sociale Benadering Dementie) presented on everyday life interventions for people with dementia developed by the Dementie Verhalenbank[note 5] and the Proeftuin Sociale Benadering Dementie.[note 6] And screening their 2014 film Leestekens, Paula Irik and Irene Kruijssen (Cordaan) similarly challenged us to rethink what good care entails. They suggested that it involves using group work, music, and crafts to listen to what people with dementia can teach us.[note 7]

Dementia lifeworlds

This stream further questioned what is involved in learning from people with dementia. In a presentation informed by critical hermeneutics (Zigon 2014), Laura Vermeulen (UvA) shared accounts of an existentially disorienting ‘stillness’ about which her solitary-living interlocutors with dementia told her (Vermeulen 2017). Workshop members explored different kinds of stillness in their own lives and asked how these come about. A gentleman suffering from gradual hearing loss agreed that the particular kind of stillness each of us experiences could say something about our abilities to adapt to our surroundings.

Following up on this conclusion, we asked how we could avoid reducing our experiences to medical labels. Participants told us that they learned how to work with The’s (2015) ‘social approach to dementia’ – an approach highlighting dementia’s relational aspects – when discussing the case of Mrs Petta in Mark Smit’s (UvA) workshop. Could the withdrawal of this woman with dementia from social interaction be attributed not only to the progression of her Alzheimer’s disease (medical reasoning) but also to changes in her social surroundings (social reasoning) (Smit 2017)?

During the presentation by Rikke Komen, Zerline Henning, and Heiba Targhi Bakkali on their ‘Dementia Diaries’ project (Dementie Verhalenbank 2016), speech recordings of people with dementia taught us how hurtful it can be when others belittle you. Discussing Adelheid Roosen’s 2017 film Mum, we asked whether the playful ways of communicating with people with dementia that Roosen promotes should be understood as levelling or as a way of ‘seeing the person behind the disease’.

Eric, who lives with Alzheimer’s disease and who is an advocate of an approach he calls ‘happy decline’, said that he agreed with Roosen: dementia invites us to allow for a certain playfulness that is generally disregarded in much of our adult lives. Yet Roosen put it even more strongly. She argued that attending closely to the lives of people with dementia challenges us to engage in self-scrutiny. Living well with dementia demands that we ‘[g]ently consider our own presumptions and judgements. And not attach a lot of value to them. That way, we are not bothered by ourselves so much’.

Dementia for carers and in society

The third workshop stream focused on carers and the social and cultural surroundings of dementia. Natashe Lemos Dekker (UvA) argued that living well with dementia requires us to discuss dying well and to consider what is entailed in achieving a ‘good death’ with dementia (Lemos Dekker 2017). She illustrated how dignity, the absence of pain and suffering, and not being lonely are crucial elements at the end of life. We discussed what dignity means to us and how we could maintain contact with the person with dementia in the face of loss.

Annetje Bootsma (Proeftuin Sociale Benadering Dementie), following The’s approach, discussed the conclusions of her study on successful ageing (Von Faber et al. 2001), and how physicians might focus on how people with dementia cope rather than on their medical symptoms. Acknowledging the various ways that people who are afflicted with dementia experience their situation, Silke Hoppe (UvA) showed how early-onset dementia differs from late-onset dementia in terms of the severity of its impact on young family members (Hoppe 2017). Starting with the provocative question ‘How to increase the stress of family carers?!’ we analysed how to alleviate the burden on different family members. 

In one of the programme’s keynote speeches, Leny van Dalen (Cordaan) argued that it is crucial to attend to families’ silent grief in the face of memory loss (Van Dalen 2017). Her screening of Szymborska’s (2017) powerfully staged poem ‘A Few Words on the Soul’[note 8] invited the audience to resonate with grief for the first time in what was otherwise a positive and bustling conference.

Collaborative challenges and affordances

These emotionally charged and compelling days were framed by The and Pols’s opening and closing words to the conference. Drawing on Kitwood (1997), The introduced her ‘social approach to dementia’ (The et al. 2016) as a way of ‘seeing the person behind the disease’ in a field heavily dominated by medical approaches. Working with this approach, she argued, involves asking the following questions: 1) what changes do I experience?, 2) how do I cope with them?, and 3) how do my social surroundings respond? Pols spoke about how philosophers of the good life such as Aristotle and Petrarch left the university’s ivory tower to talk to people living their everyday lives. She asked whether anthropologists working collaboratively could be considered as taking over the role of these philosophers, in that they have all made personal quandaries of daily life into shared ones. 

This is what the collective’s final reflections focused on. If collaborative work is about transforming personal quandaries of life into shared ones, how well did we proceed in making this work? We agreed that it worked well in the case of the plenary conversation with Eric and Mart, both of whom live with Alzheimer’s disease. This discussion, which followed the screening of a film on their friendship and life with dementia (Wilhelmus and Vermeulen 2017),[note 9] formed the indisputable heart of the two days. It brought laughter, tears, and a heated debate on what these men would spend their money on if they were to become the ministers of a new Department of Dementia.

Given the resonance of this conversation, did the conference do enough to bring forward the concerns of people with dementia, their carers, and practitioners? Did we manage to bring together all of the insights shared in the workshop sessions during the closing debate?

The challenge of making divergent positions meet tried our attention throughout the workshop sessions, and even more so during the closing debate. Having foreseen potential difficulties in generating feedback on the workshop discussions, we had invited the theatre group Terugspeeltheater and graphic reporter Willemijn Lambert to artfully ‘translate’ what was talked about in the plenary.

These performances deepened our understanding of what was shared. But the conventional plenary debate itself did not allow all present to jointly gather the lessons learned. This left us wondering whether doing collaborative work requires abstention from plenary debates entirely, opting for the collaborative collection of results instead.

In the spirit of the conference’s collaborative challenges and affordances, we suggest that if the work of making quandaries of daily life into shared ones is itself shared among academics and people working in the field, all should be recognised as co-authors of the event and of its report. It is only through attentive co-labouring that the university can become a hospitable workshop space (Krause and Driessen 2017), in which conversations on topics as intricate as dementia and the good life can be owned by all present in different ways.

Acknowledgements

We would like to thank the Amsterdam Institute of Global Health and Development, the Anthropology Department of the University of Amsterdam, the Ben Sajetcentrum, the Proeftuin Sociale Benadering Dementie, and the RCOAK foundation for their generosity in funding this conference. We are grateful to Cordaan for our ongoing collaboration. Finally, we would like to thank Jeannette Schols for the beautiful pictures, and Ulrike Scholtes for putting them together.

About the authors

The care collective consists of academics and practitioners from diverse organisations. The symposium was organised by UvA PhD candidates Laura Vermeulen (main organiser), Annelieke Driessen, Silke Hoppe, Natashe Lemos Dekker, and Susanne van den Buuse (co-organisers); UvA faculty members Kristine Krause (Assistant Professor) and Jeannette Pols (Socrates Professor); and research master’s student Els Roding (main organiser). The collective also includes: Annetje Bootsma (psychogeriatric specialist, Proeftuin Sociale Benadering Dementie), Rikki Braas (occupational therapist specialised in dementia care, Cordaan), Leny van Dalen (psychiatrist, family therapist, and leader of dementia expertise network, Cordaan), Titia Daniels (dementia case manager and community nurse, Cordaan), Zerline Henning (researcher, Dementie Verhalenbank), Anja Hiddinga (Assistant Professor, UvA), Paula Irik (pastoral care, Cordaan), Rikke Komen (researcher, Dementie Verhalenbank and Proeftuin Sociale Benadering Dementie), Irene Kruijssen (neurological music therapist, Cordaan), Eric van Neure (experience expert), Fred Peters (clinical health scientist), Jenneke van Pijpen (programme manager, Ben Sajetcentrum), Adelheid Roosen (actor and filmmaker), Mark Smit (PhD candidate, UvA), Heiba Targhi Bakkali (journalist, De Correspondent), Anne-Mei The (Professor by Special Appointment, UvA, founder of Proeftuin Sociale Benadering Dementie and the Dementie Verhalenbank), Mart van de Vegt (experience expert, ‘Van de Vegt’ is a pseudonym), and Hugo van der Wedden (researcher, Proeftuin Sociale Benadering Dementie). The workshop was facilitated by Marije de Groot (Research Assistant, UvA).

References

Buuse, Susanne van den. 2016. ‘We Are Responsible…But for What? On How the Responsibilisation of Nursing Home Residents Creates Hyper-Responsibility and Uncertainty for Care Workers’. Paper presented at the 115th Annual Meeting of the American Anthropological Association, Minneapolis, MN, 16–20 November.

Driessen, Annelieke. 2017. ‘Sociomaterial Will-Work: Aligning Daily Wanting in Dutch Dementia Care’. In Care in Healthcare: Reflections on Theory and Practice, edited by Joachim Boldt and Franziska Krause, 111–33. London: Palgrave Macmillan

Irik, Paula, and Irene Kruijssen. 2014. ‘Leestekens: Levenskunst van mensen met dementie’. https://www.cordaan.nl/leestekens-levenskunst-van-mensen-met-dementie

Dalen, Leny van. 2017. ‘Het Stille Verdriet van Mensen met Dementie en Hun Geliefden’. In Goed Leven met Dementie: Dialoog tussen Wetenschap en Praktijk, edited by Anne-Mei The, Jeannette Pols, and Robert Pool, 70–74. Amsterdam: Ben Sajetcentrum and Universiteit van Amsterdam.

Dementie Verhalenbank. 2015. ‘De Dementie Verhalenbank’. http://dementieverhalenbank.nl/.

Hoppe, Silke. 2017. ‘“A Sorrow Shared Is a Sorrow Halved”: The Search for Empathetic Understanding of Family Members of a Person with Early-Onset Dementia’. Culture, Medicine, and Psychiatry. Published online 4 August. https://doi.org/10.1007/s11013-017-9549-4

Kitwood, Tom. 1997. Dementia Reconsidered: The Person Comes First. London: Open University Press.

Krause, Kristine, and Annelieke Driessen. 2017. ‘Soep Doet Goed! Werkplaatsen om Samen te Denken, te Spreken… en te Eten’. In Goed Leven met Dementie: Dialoog tussen Wetenschap en Praktijk,edited by Anne-Mei The, Jeannette Pols, and Robert Pool, 85–89. Amsterdam: Ben Sajetcentrum and Universiteit van Amsterdam.

Law, John. 2009. ‘Actor Network Theory and Material Semiotics’. In The Blackwell Companion to Social Theory, edited by Bryan S. Turner, 141–58. Oxford: Blackwell.

Lemos Dekker, Natashe. 2017. ‘Moral Frames for Lives Worth Living: Managing the End of Life with Dementia’. Death Studies. Published online 9 January. https://doi.org/10.1080/07481187.2017.1396644

Pols, Jeannette. 2005. ‘Enacting Appreciations: Beyond the Patient Perspective’. Health Care Analysis 13, no. 3: 203–21. https://doi.org/10.1007/s10728-005-6448-6.

Pols, Jeannette. 2011. ‘Breathtaking Practicalities: A Politics of Embodied Patient Positions’. Scandinavian Journal of Disability Research 13, no. 3: 189–206.

Pols, Jeannette. 2017. ‘Tot Slot’. In Goed Leven met Dementie: Dialoog tussen Wetenschap en Praktijk, edited by Anne-Mei The, Jeannette Pols, and Robert Pool, 90–91. Amsterdam: Ben Sajetcentrum and Universiteit van Amsterdam.

Roosen, Adelheid. 2017. Mum. Female Economy. Movie trailer, 1:28. https://www.youtube.com/watch?v=V-vGuQmPcHU.

Smit, Mark. 2017. ‘Kwaliteit van Leven en Zorg voor Mensen met Dementie: Berichten uit het Verpleeghuis’. In Goed Leven met Dementie: Dialoog tussen Wetenschap en Praktijk, edited by Anne-Mei The, Jeannette Pols and Robert Pool, 45–48. Amsterdam: Ben Sajetcentrum and Universiteit van Amsterdam.

Szymborska, Wislawa. 2017. ‘Enige Woorden over de Ziel’ [Some notes on the soul]. https://www.youtube.com/watch?v=o53Hl0NZoyY.

The, Anne-Mei, Liz Cramer, Roelof Jonkers & Margje Mahler. 2015. ‘Sociale Benadering Dementie’. In Sociale Benadering Dementie: Het Beste Medicijn, edited by Anne-Mei The, Liz Cramer, Roelof Jonkers, and Margje Mahler, 8–19. Amsterdam/Drachten: Dementie Verhalenbank and Proeftuin Sociale Benadering Dementie.

Vermeulen, Laura, Annelieke Driessen, Natashe Lemos Dekker, Els Roding, Silke Hoppe, Susanne van den Buuse, Kristine Krause, Anne-Mei The, and Jeannette Pols. 2017. ‘Goed leven met dementie. Hoe doen we dat?’ In Goed Leven met Dementie: Dialoog tussen Wetenschap en Praktijk, edited by Anne-Mei The, Jeannette Pols and Robert Pool, 14–19. Amsterdam: Ben Sajetcentrum and Universiteit van Amsterdam.

Vermeulen, Laura. 2017. ‘“People Die at Home”: On Stillness and Re-settling a Place of Existence among People with Dementia Living Alone’. Paper presented at the UvA-UCLA workshop ‘Crisis and the Ordinary’, University of Amsterdam, 5–6 April.

Von Faber, Margaret, Annetje Bootsma–van der Wiel, Eric van Exel, Jacobijn Gussekloo, Anne Lagaay, Els van Dongen, Dick Knook, Sjaak van der Geest, and Rudi Westendorp. 2001. ‘Successful Aging in the Oldest Old: Who Can Be Characterized as Successfully Aged?’ Archive of Internal Medicine 161, no. 22: 2694–2700. https://doi.org/10.1001/archinte.161.22.2694

Wilhelmus, Jeroen, and Laura Vermeulen. 2017. Goed Leven met Dementie: Een Gesprek met Eric en Mart. Movie, 13:09. https://youtu.be/CNPJo4YrL2M

Zigon, Jarrett. 2014. ‘An Ethics of Dwelling and a Politics of World-Building: A Critical Response to Ordinary Ethics’. Journal of the Royal Anthropological Institute 20, no. 4: 746–64.