Innovations in diversity and equity in social health research in dementia:
Kick-off of the JPND INTEREST Working Group
Dublin, Ireland. Left to right: Prof. Karen Wolf-Ostermann, Dr David Neal, Dr. Ana Diaz, Dr Clarissa Giebel, Prof Rene Thyrian, (on screen:) Top: Prof Rose-Marie Droes, Middle: Dr Wei Qi Koh, Prof Martina Roes, Prof Joanna Rymaszewska, Bottom: Prof Manuel Gonçalves Pereira, Dr Louise Hopper, Prof Iva Holmerova, Dr Hannah Christie, Dr Dorota Szcześniak, Dr Sara Laureen Bartels, Dr Nicole Muller, Dr Adelina Comas, Prof Marjolein de Vugt, Prof Dymna Casey.
At the end of February, over twenty members of INTEREST (see picture) attended a two-day hybrid meeting to kick-off their work on inequity and unmet needs in dementia care in Europe, with a special focus on social health and intersectionality. Funded by JPND (50.000€, grant number: JPND-WG-2022-1), the INTEREST Working group is led by Dr Louise Hopper (Dublin City University) and consists of international experts with interdisciplinary backgrounds. In addition to discussing the core frameworks (Social Health Framework1,2; Intersectionality3,4; Inequity5), the meeting resulted in a refined primary question and goal of the Working Group:
“How can we collaboratively influence the research agenda in Europe so that it prioritizes the investigation of multifaceted inequities leading to unmet needs among diverse populations living with dementia and their carers? We will systematically examine these issues through the lens of social health and intersectionality, with an emphasis on the specific mechanisms of policy and tailored interventions including technology.”
To drive these efforts further, the members split into several sub-groups working on 1) reviewing (unmet) needs, led by Dr Wei Qi Koh (University of Queensland, Australia), 2) gaining a deeper understanding into effective interventions, led by Dr David Neal (Amsterdam University Medical Center, the Netherlands), 3) surveying inequities across Europe, led by Adelina Comas (London School of Economics and Political Science, the UK), 4) consulting the European Working Group of People with Dementia as well as European Dementia Caregiver Working Group about lived experiences, led by Dr Ana Diaz (Alzheimer Europe), and 5) communicating to and with audiences from academic, healthcare, policy, industry, and the public, led by Dr Sara Laureen Bartels (Maastricht University, the Netherlands). These groups will collaborate closely with the framework sub-groups, namely Social Health and Intersectionality, co-led by Prof Marjolein de Vugt (Maastricht University, the Netherlands), and Prof Martina Roes (DZNE, Germany), and Inequalities, led by Dr Clarissa Giebel (University of Liverpool, UK).
Following this fruitful kick-off meeting, members are starting the work and reconvene again in June 2024 to discuss progress and first insights. If you are interested in received updates from INTEREST, please reach out to Dr Sara Laureen Bartels (sara.bartels@maastrichtuniversity.nl).
Written by: Dr Sara Laureen Bartels & Dr Louise Hopper
References:
1 Dröes, R. M., Chattat, R., Diaz, A., Gove, D., Graff, M., Murphy, K., … & INTERDEM sOcial Health Taskforce. (2017). Social health and dementia: a European consensus on the operationalization of the concept and directions for research and practice. Aging & mental health, 21(1), 4-17.
2 Vernooij-Dassen, M., Verspoor, E., Samtani, S., Sachdev, P. S., Ikram, M. A., Chattat, R., … & Wolf-Ostermann, K. (2022). Recognition of social health: A conceptual framework in the context of dementia research. Frontiers in Psychiatry, 13, 1052009.
3 Rai, S. S., Peters, R. M., Syurina, E. V., Irwanto, I., Naniche, D., & Zweekhorst, M. B. (2020). Intersectionality and health-related stigma: insights from experiences of people living with stigmatized health conditions in Indonesia. International journal for equity in health, 19, 1-15.
4 Hankivsky, O., Grace, D., Hunting, G., Giesbrecht, M., Fridkin, A., Rudrum, S., … & Clark, N. (2014). An intersectionality-based policy analysis framework: critical reflections on a methodology for advancing equity. International journal for equity in health, 13, 1-16.
5 Dahlgren, G., & Whitehead, M. (2021). The Dahlgren-Whitehead model of health determinants: 30 years on and still chasing rainbows. Public health, 199, 20-24.