This month’s In Focus piece brings an overview of an EU-funded research project on ageing and technology; one that approaches the topic from a health perspective, with a specific focus on dementia. This project is being led by ACT collaborator Dr. Paul Higgs (University College London), whose research interests stem from work he conducted with Dr. Chris Gilleard which has been published in the books Cultures of Ageing: Self, Citizen and Society (2000) and Contexts of Ageing: Class, Cohort and Community (2005). The text also draws attention to the work of two graduate students working with Dr. Higgs in related areas of research. The piece begins with Dr. Higgs framing his current EU funded research and then Yvette Verneer and Sébastien Libert introduce themselves and their research to the ACT network. While not specifically connected to ACT’s three inter-related research areas, the piece offers a complimentary point of departure – both theoretically and geographically – on dementia and emerging technologies.
Professor Paul Higgs, University College London Yvette Verneer, University College London Sébastien Libert, INDUCT (Interdisciplinary Network for Dementia Using Current Technology)
Spotlight on Technology and Dementia Research
The In Focus editors have asked for that the first time I outline the research I have been engaged in as part of the EU funded INDUCT programme that began in October 2016. Firstly, what is it? and who does it involve? INDUCT stands for Interdisciplinary Network for Dementia Using Current Technology. Funded through the European Union’s Horizon 2020 funding platform, INDUCT aims to develop a premier quality multi-disciplinary, multi-professional, and inter-sectorial research framework for Europe aimed at improving technology and care for people with dementia. At UCL we are lucky to have been awarded funds for two Early Stage Researchers who have been examining two aspects of the interface between technology and dementia: Yvette Vermeer and Sébastien Libert (both will explain their projects below). One of the stipulations of the programme is that the researchers had to come from a country outside of the one that the host institution was located in. Consequently, Yvette comes from the Netherlands and Sébastien from Belgium. Another stipulation is that the researchers also have to have been registered for a PhD at UCL. These PhD students are supervised by myself and my colleague Dr Georgina Charlesworth. This combination of a sociologist and a psychologist gives this programme of research a considerable interdisciplinary orientation.
Research on Empowerment and Surveillance
Hello, I’m Yvette Verneer and a Dutch PhD student at University College London. In 2014, I started researching Dementia and Technology in Canada. With a background in Consumer Studies you may wonder how one ends up here, as a researcher on dementia and technology.
My late grandfather had a nasty fall in his house and agreed to wear a ‘Lifeline’. With the alarm around his neck, help was just one push of a button away. Yet, my grandfather declared, “Stupid machine…I’m not going to press this!” While laughing, I accidently pushed the button, … and nothing happened. A week later my grandfather had a fall, and by the time he was found, he had been lying on the ground for about twelve hours.
At the moment, I am very pleased to be working for INDUCT as an early-stage researcher for Project 1: “Empowerment and Surveillance Technology.” My aim is to understand what people with dementia and caregivers need in regard to surveillance products, and how using these products could impact them. Along with the adoption of a person-centred approach, I am investigating how these products are designed and marketed.
Preliminary results show that GPS products are increasingly used in dementia care. Furthermore, the market promotes products that increase safety, track people with dementia who wander, and support caregivers. Most discussions focus on how surveillance invades privacy, or how increasing safety is desirable over individual autonomy. However, surveillance products generally do not support individual needs, are often unreliable, poorly designed, and do not aid with other behaviours. Nevertheless these products are seen as the solution for supporting dementia care.
Therefore this research, conducted in three different countries, will entail the following:
Focus Group Discussions
Discussions will be held with caregivers and people living with dementia about surveillance technology products.
What do people need in terms of surveillance?
What are the impacts of using surveillance?
Followed by examining surveillance designs and how they are used and sold. As a result an analysis tool will provide:
How, and if, current surveillance products support needs
What is required for future surveillance designs to better support dementia care.
We need to explore the answers to such questions: do current surveillance products empower or restrict people with dementia and caregivers? With more information about surveillance and through raising awareness of different needs, people can make more informed choices. Also, by giving people a say in this research, they can demand more dementia-friendly designs. Furthermore, by providing an analytical tool, consumers can evaluate products that are available on the market.
When people have access to products designed according to their needs, distributors are able to sell designs that improve care.
Researchers encouraged to further investigate dementia care
Designers develop dementia-friendly products
Policymakers work with health-care professionals to distribute dementia-friendly products.
Interested in more information, or in participating? Feel free to e-mail me, or visit my blog Vermeer Researching Dementia (https://vermeeresearchingdementia.wordpress.com).
Anxiety, identity politics, and the social context of brain training
My name is Sébastien Libert. As a researcher at UCL and member of the INDUCT, I will be working on a PhD research project on the use of brain training (Online cognitive training) by people who are attempting to prevent the decline of their cognitive abilities and the onset of dementia.
Where I come from:
I have a master’s in degree anthropology (KUL University and University of Copenhagen), with previous training as an undergraduate student in sociology (Bachelor at ULB). During my master’s degree I dedicated most of my time exploring the interaction between the social sphere and the comprehension of mental health issues, and more specifically the impact that political, ideological and economic assemblages have had on the therapeutic trajectories of individuals experiencing mental health disorders. My research themes focused on the construction of subjectivity and identity in relation to perceived biological processes in contemporary health systems.
What I will be looking at:
My three-year PhD research project will, therefore, be an opportunity to look at brain training and prevention behaviour and build on my previous research experience on mental health and institutions. First, I will ask how individuals worried about dementia make sense of their situation in daily life and seek solutions, and to what extent this situation is socially constructed. In postulating that these behaviours do not exist in a “contextual vacuum”, I will be studying the impact of the complex social and cultural weaving – laws and policies, medical institutions, patient associations, private companies, etc. – in which individual perceptions of the biological ‘nature’ of dementia and prevention strategies are located.
Beginning with this perspective, I will attempt to understand the specific rationale that drives brain training users toward a technology whose effects are still controversial in preventing cognitive decline, and even more, the onset of dementia. The envisioned fulfilment of this first objective will hopefully bring more understanding of the ways in which subjectivities emerge in the interaction between social imperatives of active prevention of cognitive decline and the ideal of the self-managing, individually responsible biological citizen (Rose and Novas 2005: 451). It could also allow for further understanding in regard to the extent to which individuals worried about dementia embody a dominant and stressful imaginary that promotes the constant maintenance of performance in cognition throughout an entire life course (William et al 2012: 74).
An approach to health and society promoted by medical anthropologist Susan Whyte (2009) – including ethnography, and a qualitative methodology focusing on end users – will be used to potentially clarify our knowledge of the construction of subjectivities in reaction to these macro-narratives of health and ageing. Attitudes of brain training users could therefore be placed on a continuum that spans from resistance to conformist in reaction to the dominant discourses of cognitive decline.
From there, the second objective of this research will be to explore the ways in which such prevention behaviour and narratives of active cognitive ageing contribute to the construction of an idealized identity of “successful” ageing and the potential social exclusion of those who cannot conform, or do not want to conform to the standards and modalities of this idealized identity.
Overall, this research will aim at a critical engagement in the current debates on dementia, ageing and ethics in (public) health, the scientific community, and the public domain.
Bibliography on request: s (dot) libert (at) ucl (dot) ac (dot) uk
Sébastien Libert BSc, MSc, PhD student for INDUCT (Interdisciplinary Network for Dementia Using Current Technology) – Marie Skłodowska Curie – Division of Psychiatry – University College London