1st INTERDEM Academy Publication Award 2020-2021

This year, we implemented our 1st INTERDEM Academy publication award. With this new award, we want to stimulate communication between juniors and seniors of their research results, and we will provide the winner with a platform to give a presentation about his or her article during our next annual INTERDEM meeting. Additionally, the winner receives a monetary price of €1000, and the runner-up €500.The early stage researcher had to be the 1st author of the article sent in, the contribution should include a motivation letter, and the article had to be either published or accepted for publication in the year 2020.

The response has been high. In total, 12 articles were sent in to be assessed. We want to thank all participants for sending in their contributions. We as the INTERDEM Academy coordinating center and the members of our jury were all highly impressed by the quality of the articles sent in for this round. Each contribution was well written and had a clear link with our INTERDEM mission. Other criteria were innovative aspects, research quality and originality. It was a very difficult task to select the best papers.

After careful consideration and an extended online discussion with the jury members, 2 winners and 2 runner ups have been selected for this year’s publication award, which is one more than we originally planned to have…

We are proud to announce the following winning articles of this year’s competition:

Outcome 1st INTERDEM Academy Publication Award 2020-2021

  1.  “Anticipating an unwanted future: euthanasia and dementia in the Netherlands”

First author: Natashe Lemos Dekker

  1. “Adding to the knowledge on Patient and Public Involvement: Reflections from an experience of co-research with carers of people with dementia”

First author: Claudio Di Lorito

  1. “Using the Concept of Activity Space to Understand the Social Health of Older Adults Living with Memory Problems and Dementia at Home””

First author: Jodi Sturge

  1. “Involvement of People With Dementia in the Development of Technology-Based Interventions: Narrative Synthesis Review and Best Practice Guidelines”

First author: Harleen Rai


Shared 1st Place – Natashe Lemos Dekker

Dr Natashe Lemos Dekker is a postdoctoral researcher in the ERC project ‘Globalizing Palliative Care’ at Leiden University, where she focusses on end-of-life care in Brazil. She was awarded her PhD in Medical Anthropology from the University of Amsterdam in 2020 for her thesis titled: ‘Timing Death: Entanglements of Time and Value at the End of Life with Dementia in the Netherlands’. For this research, she conducted 18 months of ethnographic fieldwork in nursing homes in the Netherlands, and interviewed people with dementia, their family members, and care professionals.

As part of her doctoral research, her article, ‘Anticipating an Unwanted Future: Euthanasia and Dementia in the Netherlands,’ published open access in the Journal of the Royal Anthropological Institute (JRAI), theorizes from a social scientific perspective how people with dementia and their family members anticipate the future by requesting euthanasia. It discusses how images of dementia feature in their expectations of the future and motivate them to request euthanasia, and looks in detail at how they prepare, as well as defer this request in negotiation with medical professionals. The article demonstrates, further, that the biomedical and legal frames of euthanasia are socially navigated, stressing that requesting euthanasia with dementia is not an individual but a collective process.

These analytical contributions are conveyed through stories, allowing the voices and experiences of people with dementia and their relatives to form the core of this article. This resonates closely with the INTERDEM mission to involve people with dementia and their networks in research.


Shared 1st Place – Claudio di Loreto

I am delighted to be the winner of the first publication award of the INTERDEM Academy and very grateful to the academy for acknowledging work that values equal collaboration and equitability in research production between academic researchers and members of the public. I first learned about Patient and Public Involvement (PPI) in research in 2014 whilst working in the Promoting Independence in Dementia (PRIDE) study with Professor Martin Orrell at University College London (UCL), United Kingdom. Since then, I have strived to raise the bar of PPI in any research project I was involved in. I found fertile ground for further exploration of a particular type of PPI, co-research, in my current role as a Research Fellow in the Promoting Activity, Independence and Stability in Dementia (PrAISED) study at the University of Nottingham, United Kingdom (https://www.nottingham.ac.uk/medicine/people/claudio.dilorito). This manuscript is the culmination of an experience of co-research, in which I and two members of the public with lived experience of caring for someone with dementia collaborated as equal partners in all stages of research, from designing the protocol and materials, to collecting and analysing data to disseminating findings. In this paper, the research team reflected on the benefits and challenges of co-research, in order to generate transferable practical knowledge for all academics and members of the public interested in pursuing good practice in PPI. I owe the success of this paper to the PrAISED team and Professor Rowan Harwood, who has shared and nurtured my vision. I would also like to acknowledge Maureen Godfrey and Marianne Dunlop, my friends and PPI collaborators in the co-research journey. For any feedback or discussion around PPI and co-research, do not hesitate to contact me at:claudio.dilorito@nottingham.ac.uk.


Shared 2nd place (runner-up) – Jodi Sturge

I am a geographer from Newfoundland and Labrador, Canada. I have an urban geography degree from Memorial University of Newfoundland and a Master’s degree in health geography from the University of Victoria. For over ten years, I worked in the social housing sector in planning, policy, and operations. I led teams and initiatives to support vulnerable people, including individuals experiencing homelessness, mental illness or addiction.

In 2018, I moved to the Netherlands to do a PhD at the Population Research Centre, Faculty of Spatial Sciences, University of Groningen. My PhD position is a part of the COORDINATEs project, an international research project funded by More Years, Better Lives represented by ZonMv, Forte (Sweden) and the Canadian Institutes for Health Research (CIHR). The project’s overarching goal is to understand the mobility patterns of older adults with memory problems living at home to improve autonomy and inform shared decision-making.

“Using the concept of activity space to understand the social health of older adults living with memory problems and dementia at home” is based on Dutch findings from the first phase of the COORDINATEs project. The article aims to use the concept of activity space to examine the social health of older adults with memory problems and dementia who live at home. Activity space is a concept used to explore spatial interactions over space and time. Linking this geographical concept to social health was inspired by Vernooij-Dassen and Jeon’s (2016) article “Social health and dementia: the power of human capabilities.”

Data were collected from individuals living with memory problems and dementia at home using a mixed-methods approach; walking interviews, 14 days of global positioning system (GPS) movement data, travel diary entries and in-depth interviews. Findings show that routine activity spaces relate to more positive social health experiences, while occasional activity spaces can contribute to and constrain social health. These findings contribute to the INTERDEM mission by providing socio-spatial insight into the social health concept and dementia research.


Shared 2nd place (runner-up) – Harleen Rai

 This review was undertaken while I was a Marie Sklodowska-Curie Research Fellow and PhD student at the University of Nottingham. As part of my PhD, I set out to develop and evaluate a new touch-screen application for people with dementia and carers. I was keen on involving people with dementia throughout the process but found that there was little guidance on how to best approach this especially in the development of new technology. Therefore, in collaboration with the authorship team, we conducted a review to uncover how people with dementia are currently being involved in developing technology and to extract good examples of such involvement leading to best practice guidelines. We systematically searched for the literature, extracted the evidence, and synthesized the findings. We found that the papers which provided good examples of involvement often offered multiple opportunities to people with dementia to provide feedback (e.g. user-tests, interviews), ensured their involvement consistently took place throughout the development process, and created a positive and empowering experience for their participants (e.g. through learning a new technological skill). In order to set a good example of involvement ourselves and to ensure our guidelines were relevant, we asked people with dementia to comment on our findings and included their feedback in our review.
Our review fits well with the INTERDEM mission as it places the person with dementia at the center in terms of its topic, their direct involvement in reviewing the findings, and by ensuring the results are accessible through an easy-read summary of the guidance. Furthermore, these findings have a wider applicability for a range of stakeholders (e.g., researchers, developers, end-users) who would like to include meaningful involvement of people with dementia in the development of new technologies. Hopefully, these best practice guidelines will then ensure that new (technology-based) psychosocial interventions are more tailored to the needs and wishes of people with dementia.