Taskforces

Leads: David Neal, Amsterdam University Medical Centre, Amsterdam, the Netherlands d.n.neal@amsterdamumc.nl; Chris Fox, University of Exeter, UK

Contact:  David Neal d.n.neal@amsterdamumc.nl

Established: 2012; Annual INTERDEM meeting, London UK

Updated: August 2025

Background: 

Work towards understanding the contribution of digital Assistive Technologies (AT) in dementia care has gathered momentum in recent years. In 2025 this taskforce updated its seminal review on the state of the art of AT, focussing on: managing everyday life; participating in pleasurable meaningful activities; dementia care provision; and identifying gaps in the evidence and challenges for future research.^1,2

Various challenges have been acknowledged.¹ These include:

• Insufficient development of applications that can be easily personalised, and a lack of evidence on applications of AI in the context of dementia;
• Limited use of standardized methods to provide evidence of usability;
• Insufficient evidence of effectiveness or cost-effectiveness from randomized controlled trials (RCTs) or alternative forms of robust evaluation;
• Implementation barriers in relation to overly high expectations for AT;
• From an ethical perspective, a need for more equitable access to technologies.

These challenges around AT can be categorized as implementation gaps, evidence gaps and needs gaps.

INTERDEM has supported collaborative pan-European research into AT, including two programmes funded by EU HORIZON 2020 Marie Sklodowska-Curie Actions, INDUCT and DISTINCT.  These networks aimed to develop a multi-disciplinary, inter-sectorial educational research framework for Europe to improve technology and care for people with dementia and to provide the evidence to show how technology can improve the lives of people with dementia. ³ A number of publications in peer review journals have arisen from INDUCT and DISTINCT, providing new insights towards bridging implementation, evidence and needs gaps, and some of its work was published in a recent book.^4,5 DISTINCT covered three themes, namely: technology to fulfil potential and obligations at a societal level; technology to manage one’s own life; and technology enabling participation in social activities.⁶ Despite these successes, INDUCT and DISTINCT have only scratched the surface: major implementation, evidence and needs gaps remain.

Therefore between 2023 and 2025 we refreshed our aims and completed the following work programmes.

• Laid the groundwork for an update to the taskforce’s 2017 position paper based on a new review of systematic reviews and Delphi study.^1,2,7
• Supported the JPND INTEREST network resulting in two peer-revied publications. One publication reviewed the current state of dementia care guidelines in Europe, specifically with respect to equity and the place of technology.⁸  The second paper reviewed the availability of personalised, effective and usable AT, based on existing literature.⁹
• Published article: determinants and strategies of (un)successful implementation of assistive technologies in dementia care: an explorative survey in Europe.¹⁰
• Completion of research project and publication of article: evidence synthesis relating to the uptake of AT among people with dementia during the COVID-19 pandemic. Finalizing consensus recommendations from this project.¹¹

Current work (2025/2026):

In 2025, artificial intelligence (AI) has been added as a focus of the taskforce. There is great hype surrounding AI, both in general in society and in health and care, and applications of generative or predictive AI could theoretically be integrated with a very wide range of existing digital AT. However, our review of systematic reviews identified no research addressing the use of AI in dementia care.¹ Given the potential challenges surrounding integration of AI into AT for people living with dementia, especially in relation to development, implementation and ethics, it is therefore important that this taskforce facilitates high quality research in this emerging field.

Workplans 2025/2026:

1.  The systematic review of systematic reviews has now been published ¹ ( see https://journals.sagepub.com/doi/10.1177/20552076251362353 ). Once the Delphi study is published, we aim to write a white paper (or position paper) based on the findings from both studies.
2. A working group of the taskforce will be formed to support dissemination of the position paper and underlying research to professionals, policymakers, and other stakeholders.
3. Further work plans, and the establishment of working groups to execute these plans and gaps surrounding AI, will be discussed at the INTERDEM annual meeting in Bologna, in October 2025.

Frequency of Planned Meetings:

This Taskforce generally meets four times per year online.

Additionally, we organise in-person taskforce meetings around major conferences. For example, in 2023, in-person meetings took place at the International Psychogeriatric Association congress in Lisbon, in June, and at the Alzheimer Europe conference in Helsinki, in October and we met in person at the Alzheimer Europe conference in Geneva in 2024. In 2025 we will meet in person at the Alzheimer Europe conference in October.

References:

1. Neal, D., Craven, M., Cross, J., Evans, S., Fox, C., Oksnebjerg, L., Alexandre, I., Aryankhesal, A., Astell, A., Ahmet B., Ditton, A., Engelsma, T. , Gregersen, R., Heins, P., Hogervorst, E., Kafadar, E.H., Poos, J., Robinson, L., Sezgin. D., Smaling, H., Szczesniak, D.,  Tan, J.R., de Vugt, M. and Meiland, F.M. (2025). Digital assistive technologies for community-dwelling people with dementia: A systematic review of systematic reviews by the INTERDEM AI & assistive technology taskforce. Digital health https://journals.sagepub.com/doi/10.1177/20552076251362353
2. Meiland F, Innes A, Mountain G, Robinson L, van der Roest H, García-Casal JA, Gove D, Thyrian JR, Evans S, Dröes R, Kelly F, Kurz A, Casey D, Szcześniak D, Dening T, Craven MP, Span M, Felzmann H, Tsolaki M, Franco-Martin M. Technologies to Support Community-Dwelling Persons With Dementia: A Position Paper on Issues Regarding Development, Usability, Effectiveness and Cost-Effectiveness, Deployment, and Ethics JMIR Rehabil Assist Technol 2017;4(1): e1 doi: 2196/rehab.6376
3. INDUCT: https://www.dementiainduct.eu/
4. Orrell M, Oliveira D, McDermott O, Verhey FR, Dassen FC, Dröes RM, editors. Improving the lives of people with dementia through technology: interdisciplinary network for dementia utilising current technology. Taylor & Francis; 2022 Nov 30.
5. DISTINCT: https://www.dementiadistinct.com/;
6. DISTINCT projects: ESRs Projects – DISTINCT (dementiadistinct.com)
7. Sezgin, D., Hegerath, F-M., Christie, H., Poos, J., Cullen, K., Meagher, E., Goncalves Pereira, M., Vollmar, H.C., O’Reilly, C., Mitchell, A., Alabdulkder, S., Neal, D.P., Janus, S. Recommendations for the development and use of technology to support people living with dementia and their caregivers: A Delphi study. In review.
8. Neal, D., Bartels, S.L., Berdai Chaouni, S., Caprioli, T., Comas-Herrera, A., Chattat, R., Diaz, A., Dröes, R.M., Faulkner, T., Felding, S.A. and Franco-Martin, M., 2025. Effective for Whom? A Review of Psychological and Social Intervention Recommendations in European Dementia Care Guidelines Through the Lenses of Social Health and Intersectionality. Behavioral Sciences, 15(4), p.457. https://doi.org/10.3390/bs15040457
9. Szczesniak, D., Molinari-Ulate, M., Neal, D.P., Bartels, S.L., Diaz Baquero, A.A., Thyrian, J.R., Franco Martin, M., Wolf-Ostermann, K., Rymaszewska, J., Dröes, R-M. Toward Better Technology for Social Health in Dementia: A Review of Implementation Recommendations and Research Priorities to Equitably meet the Demand. In preparation.
10. Roest H.G., Christie H.L., Franco-Martín M.A., Dröes R-M., de Vugt M.E., Meiland F.J.M.(2024)  Determinants of (un)successful implementation of research-based assistive technologies in dementia care: an explorative survey.  JMIR Aging 2024;7: e53640 doi: 10.2196/53640
11. Barbosa A., Ferreira A.R., Smits C., Hegerath F.M., Vollmar H.C., Fernandes L., Craven M.P., Innes A., Casey D., Sezgin D., Hopper L., Øksnebjerg L. Use and uptake of technology by people with dementia and their supporters during the COVID-19 pandemic. Aging Ment Health. 2024 Jan-Feb;28(1):83-94. doi: 10.1080/13607863.2022.2163375

Members (currently 67 members)

Isabel Alexandre, University Institute of Lisbon, Portugal; Golnaz Atefi, Radboud University Medical century, The Netherlands; Arlene Astell, University of Reading, UK; Ana Barbosa, University of Bradford, UK; Ellis Bartholomeous, Eindhoven Technical University, The Netherlands; Ahmet Begde, Loughborough University, UK; Jeroen Bruinsma, Maastricht University, The Netherlands; Julieta Camino, University of East Anglia, UK; Rabih Chattat, University of Bologna, Italy; Ilaria Chirico, University of Bologna, Italy; Hannah Christie, Maastricht University, The Netherlands; Michael Craven, University of Nottingham, UK; Jane Cross, University of East Anglia, UK; Tom Dening, University of Nottingham, UK; Priscilla Doyle, University of Galway, Ireland; Rose-Marie Dröes, Amsterdam UMC (VUmc), The Netherlands; Thomas Engelsma, Amsterdam UMC, The Netherlands; Shirley Evans, University of Worcester, UK; Katie Featherstone, University of West London, UK; Simone Felding, DZNE, Germany; Lia Fernandes, University of Porto, Portugal; Ajda Flisar, KU Leuven, Belgium; Chris Fox, University of Exeter, UK (co-lead); Manuel Franco, Intras, Spain; Lesley Garcia, University of Nottingham, UK; Vaitsa Giannouli, Hellenic Open University, Greece; Manuel Gonçalves-Pereira, Nova Medical School, Portugal; Dianne Gove, Alzheimer Europe, Luxembourg; Rikke Gregersen, VIA University College, Denmark; Kyle Harrington, the University of Nottingham, UK; Pascale Heins, Maastricht University, The Netherlands; Eef Hogervorst, Loughborough University, UK; Louise Hopper, Dublin City University, Ireland; Maarten Houben, TU Eindhoven, the Netherlands; Anthea Innes, McMaster University, Canada; Sarah Janus, UMCG Groningen, The Netherlands; Aysegul Kafada, University of Nottingham, UK; Raymond Koopmans, Radboud UMC, Nijmegen, The Netherlands; Jenni Lynch, University of Hertfordshire, UK; Esther Loseto-Gerritzen, University of Nottingham, UK; Franka Meiland, Amsterdam UMC (VUmc), The Netherlands; Mauricio Molinari, University of Salamanca, Spain; Esme Moniz-Cook, University of Hull, UK; David Neal , UMC Amsterdam, The Netherlands (co-lead); Laila Øksnebjerg, University of Copenhagen, Denmark; Giovanni Ottoboni, University of Bologna, Italy; Channah Osinga, Amsterdam UMC, The Netherlands; Annette Plantinga, NHL Stenden University and the Alzheimer Center of Groningen, The Netherlands; Jackie Poos, Erasmus UMC, The Netherlands; Anne Margriet Pot, WHO, Switzerland / Erasmus UMC, The Netherlands; Louise Robinson, Newcastle University, UK; Anthony Scerri, University of Malta, Malta; Duygu Sezgin, University of Galway, Ireland; Sietske Sikkes, Amsterdam UMC, The Netherlands; Hanneke Smaling, Leiden University MC, The Netherlands; Sarah Smith, Leeds Beckett University, UK; Dirk Steijger, Maastricht University, The Netherlands; Dorota Szcześniak, Wroclaw Medical University, Poland; Josephine Tan, Amsterdam UMC, The Netherlands; Daksha Trivedi, University of Hertfordshire, UK; Henriette van der Roest, Amsterdam UMC (VUmc), The Netherlands; Horst Vollmar, Ruhr-University Bochum, Germany; Kay de Vries, The Gateway, De Montfort University, UK; Marjolein de Vugt, Maastricht University, The Netherlands; Tracy Williamson, University of Worcester, UK; Emma Wolverson, University of West London, UK; Nahid Zokaei, Brain Plus, Denmark.

Novel designs and methodologies for complex intervention research in dementia care

Lead: Maud Graff, Radboud University Medical Center, Nijmegen, The Netherlands

Co-Leads:  Sara Laureen Bartels, Alzheimer Centrum Limburg, Maastricht University, Maastricht, The Netherlands; Federica D’Andrea, The Geller Institute of Ageing and Memory (GIAM), University of West London, UK

Contact: Maud Graff Maud.graff@radboudumc.nl

Established: 2007 Estoril, Portugal: renewed 2018 at Alzheimer Europe INTERDEM meeting Barcelona, Spain and INTERDEM meeting (Bucharest) 2022. New Leadership (2023).

Updated:  July 2025

Introduction

This taskforce was initiated early in the life of INTERDEM with funded projects and publications on outcome measurements (2003-4; JPND Charting new territory 2014 -2015), quality indicators (EUROCODE (2006 -2008), methodological issues and on involving people with dementia in research.  For information on this work and a full background rationale for the present Taskforce see Appendix:  Background and References 1 – 25.  

New leadership in 2023  facilitated discussions about knowledge on how to design inclusive psychosocial intervention research  which we agreed was a next step for advancing methodology in dementia care research. This also has scope to raise awareness of alternative research methods for use by funders, reviewers and journal editors.

Overall Task Force Aims

1. To provide an overview of relevant new designs, methodologies and approaches to address differing research questions, in the development evaluation and implementation of psychosocial interventions in dementia research – that fits to routine practice, political and societal expectations, and cover MRC core elements;
2. To map and gain consensus on designs, research methodologies and approaches to address differing research aims in psychosocial intervention dementia research, and that cover the MRC core elements; and place them in, between or alongside the different phases of the current UK MRC framework (Skivington et al. 2021).
3. To disseminate knowledge on current research practices and future directions for methodology in psychosocial intervention dementia research work – as relevant to researchers, policy makers, people with dementia, carers, professionals and other stakeholders.

Frequency of meetings: Monthly (second Thursday of each month)

Activities and Deliverables 2023 – 2026

• organise discussion with INTERDEM researchers and beyond on placing relevant (new) methodologies and approaches in, between or alongside phases of the current MRC framework (Skivington et al. This began in 2023 and remains ongoing work (i) during meetings with TF members presenting on different topics; see Deliverables (i) 1-10 below – TF presentations and our published opinion paper (see References Bartels et al. 2024).
• disseminate and provide opportunities for new learnings with audiences internationally and with early career researchers – now incorporated in our 2-year funded taskforce research study METHODEM: Methodological consensus for complex Interventions in dementia, evaluating or implementing psychosocial interventions research in dementia. This was  submitted by Maud Graff and Sara Bartels and is now led by Maud Graff, Sara Bartels and Federica D’Andrea (TF lead/co- leads) with active collaboration from TF members. We use engagement workshops / discussions surrounding our research award (see Deliverables (ii) 1 -14 below – webinars and presentations and a current submission (Bartels et al. 2025). The focus is on the METHODEM research programme involving a systematic scoping review (see submitted protocol D’Andrea et al. 2025) where TF members are helping with screening 23,079 articles; and an online Delphi study to collect relevant (new) approaches to designs and methodologies. This work will continue into 2025/ 2026.
• move from our opinion paper (Bartels et al., 2024) to publish a systematic scoping review and consensus work on new methodologies and approaches related to differing research aims for psychosocial interventions in dementia research, that cover the MRC core elements – with recommendations for use within, between or alongside phases of the current MRC framework. This is as part of the METHODEM 2-year study.

References

Bartels SL, Stephens N, D’Andrea F, Handley M, Markaryan M, Nakakawa Bernal A, Van den Block L, de Bruin SR, Windle K, Roes M, Janssen N, Christie H, Garcia L, Teesing G, Moniz-Cook E and Graff M (2024) Discussing methodological gaps in psychosocial intervention research for dementia: an opinion article from the INTERDEM Methodology Taskforce guided by the MRC framework. Frontiers in dementia, 3, 1458023 Doi: 10.3389/frdem.2024.1458023

Bartels, Sara Laureen, D’Andrea, Federica, Graff, Maud – on behalf of the INTERDEM Methodology Taskforce (submitted July 2025)  Advancing methodologies and methods for psychosocial intervention research in dementia: The METHODEM project. Occupational Therapist Science Column (submitted July 2025)

D’Andrea F, Bartels SL, Markaryan M., Algar PM, Nakakawa Bernal A., de Bruin SR, Chirico, Flynn A., Garcia L, Gebhard D, Handley M, Janssen N, Roes M, Stephens N, Teesing G, Van den Block L, Windle K, Moniz-Cook E. and Graff M. (submitted April 2025 ) Methodologies and methods for the development, evaluation, and implementation of psychosocial interventions for dementia: Protocol for a scoping review.

Skivington K, Matthews L, Simpson SA, Craig, P Baird B, Blazenby, JM, Boyd KA, Craig N, French DP, McIntosh E, Petticrew, M & Rycroft-Malone J.  (2021) A new framework for developing and evaluating complex interventions: update of Medical Research Council guidance, BMJ, 374:n2061 https://doi.org/10.1136/bmj.n2061

Deliverables (2023 –July 2025)

(i)      Taskforce meeting presentations

1. Sara Laureen Bartels: The Experience Sampling Method: Digital self-monitoring to understand and support everyday life in aging and dementia. Power Point slides bartels@maastrichtuniversity.nl
2. Maud Graff:  Use of different research designs for developing, evaluating & implementing person-centered psychosocial interventions in dementia – applied within the MRC framework.  PowerPoint slide/related papers graff@radboudumc.nl
3. Simone de Bruin: Participatory Action Research to improve dementia care and support. PowerPoint slides de.bruin@windesheim.nl
4. Nathan Stephens:  A pragmatic evaluation of the Worcestershire Meeting Centres Programme for people affected by dementia – Power Point slides/related papers  n.j.stephens@outlook.com
5. Lieve Van den Block: Theory of change to develop and evaluate complex palliative care interventions. Power Point slides van.den.block@vub.be
6. Fanny Monnet: Developing a website to support advanced care planning for people with dementia and their family caregivers Power Point slides monet@vub.be
7. Susan Conquer: PAR and co-production of a Library Memory Café. Power Point slides Conquer@uos.ac.uk
8. Federica D’Andrea: Building a Programme Theory for olfactory stimulation interventions: a realist review.  For Power Point slides/ information federica.dandrea@uwl.ac.uk
9. Doris Gebhard: Insights into methods used in research on health promotion in long-term care. For Power Point slides/ information. doris.gebhard@tum.de
10. Marine Markaryan, Part 1 ‘A rigorous stepwise procedure for multi-stakeholder design of implementation actions. Part 2: Maintaining Couple hood in the face of dementia’: PhD Trajectory presentation for Methodology Taskforce.  For Power Point slides/ information  marine.markaryan@maastrichtuniversity.nl

​(ii) Webinars/ Engagement Presentations / Dissemination (March 2023 – July 2025)

1. Webinar– Invitation to INTERDEMas part of a series by the LINC-AD About | LINC-AD | Alzheimer’s Association in collaboration with the GSA Maud J. L .Graff: Use of different research designs for developing, evaluating and implementing person-centered psychosocial interventions in dementia and applied within the MRC framework. GSA webinar, March 2, 2023  – Contact maud.graff@radboudumc.nl
2. Webinar– Invited by the MSCA training network HOMEDEM as part of the doctoral training (November 27, 2023) Presentations by Maud J.L. Graff and Sara Laureen Bartels on “Frameworks to develop, evaluate, and implement complex interventions for people with long-term health conditions”. Contact: sara.bartels@maastrichtuniversity.nlor maud.graff@radboudumc.nl
3. Webinar – INTERDEM Spotlight series, invited by INTERDEM Academy (10.30-12.30, March 8^th, 2024) Presentations by Maud J.L. Graff, Lieve Van den Block, and Nathan Stephens: Innovative methodologies and designs in dementia research Contact: maud.graff@radboudumc.nl, lieve.van.den.block@vub.be, n.j.stephens@outlook.com
4. Oral Presentation – 34^th Alzheimer’s Europe Conference. Geneva Switzerland (October 2024) Maud, Graff, Sara Lauren Bartels and Federica D’Andrea: Designs and methodologies to develop, evaluate, and implement psychosocial interventions in dementia. Discussing gaps and advancing the field through the METHODEM project.
5. Poster Presentation – 34^th Alzheimer’s Europe Conference. Geneva Switzerland (October 2024) Federica D’Andrea, Sara Laureen Bartels, Nathan Stephens, members of the INTERDEM Methodology Taskforce & Maud Graff: Novel designs and methodologies for complex psychosocial interventions in dementia.
6. Poster Presentation – 34^th Alzheimer’s Europe Conference. Geneva Switzerland (October 2024) Sara Laureen Bartels, Federica D’Andrea, members of the INTERDEM Methodology Taskforce & Maud Graff: METHODEM: Methodological consensus for complex interventions in dementia.
7. Oral Presentation – I^st Occupational Therapy Europe Congress, Kraków, Poland (October 2024) Maud Graff: Innovative methods and methodologies for developing, evaluating, and implementing occupational therapy and other psychosocial interventions in dementia. How to cover the core-elements of the MRC framework.
8. In-Person workshop – SPREAD+ consortium meeting – Dutch dementia network, Amsterdam, The Netherlands (2025). Sara Laureen Bartels & members of the INTERDEM Methodology Taskforce. Measuring what matters.
9. Webinar – ISTAART Non-pharmacological Intervention Professional Interest Area (PIA): Tiny Dots (May 2025) Federica D’Andrea, Maud Graff and Melanie Handley & members of the INTERDEM Methodology Taskforce: Methods and methodologies to develop, evaluate, and implement psychosocial interventions in dementia. Discussing gaps and advancing the field through the METHODEM project.
10. Poster Presentation – 18^Th UK Dementia Congress, Coventry, UK (November 2024). Federica D’Andrea, Sara Laureen Bartels, Nathan Stephens, members of the INTERDEM Methodology Taskforce & Maud Graff: Novel designs and methodologies for complex psychosocial interventions in dementia.
11. Poster Presentation: 18^Th UK Dementia Congress, Coventry, UK (November 2024). Federica D’Andrea, Sara Laureen Bartels, members of the INTERDEM Methodology Taskforce & Maud Graff: METHODEM: Methodological consensus for complex interventions in dementia
12. Invited Presentation –Paris Nanterre University, Seminar (May 2025) Federica D’Andrea & , members of the INTERDEM Methodology Taskforce: Psychosocial intervention research for dementia: Discussing methodological gaps and novel approaches.
13. Oral presentation – British Society of Gerontology 54th Annual Conference (June 2025). Federica D’Andrea, Sara Laureen Bartels, the INTERDEM Methodology Taskforce, & Maud Graff: Methodologies and methods for research on psychosocial interventions for dementia: Gaps and state-of-the-art evidence.
14. Poster presentation – British Society of Gerontology 54th Annual Conference (June 2025): Federica D’Andrea, Sara Laureen Bartels, the INTERDEM Methodology Taskforce & Maud Graff: Consensus on core elements and methodological approaches for research on psychosocial interventions in dementia: Protocol for a Delphi study

Taskforce Members (July 2025):

Maud Graff, Radboud University Medical Center, Nijmegen, NL, graff@radboudumc.nl; (lead); Sara Laureen Bartels, Maastricht University, NL, bartels@maastrichtuniversity.nl; (co-lead); Federica D’Andrea, University of West London, UK, federica.dandrea@uwl.ac.uk (co-lead);

Members in Alphabetical order

Patricia Masterson Algar, Bangor University, Wales, UK;

Andrea Nakakawa Bernal, The Polytechnic University of Milan, Italy;

Simone de Bruin, Windesheim University of Applied Sciences, NL;

Maria Caulfield, University of Bradford, UK;

Ilaria Chirico, University of Bologna, Italy;

Emma Elliott, University of Manchester, UK;

Aisling Flynn, Bournemouth University, UK;

Lesley Garcia, University of Nottingham, UK;

Doris Gebhard, Technical University of Munich, Germany;

Melanie Handley, University of Hertfordshire, UK;

Niels Janssen, Maastricht University, NL;

NL; Marine Markaryan, Maastricht University, NL;

Esme Moniz-Cook, University of Hull, UK;

Nathan Stephens, University of Worcester, UK;

Martina Roes, DZNE/Witten, Germany;

Lieve Van den Block, Vrije Universiteit Brussel, Belgium;

Karen Windle, University of Ulster, Northern Ireland, UK.

 

Appendix: Background / References: ^1-25 (** ¹¹ published in 2025)

This taskforce was initiated early in the life of INTERDEM. It initially focused on outcome measurements (2003-4) and methodology^{1, 2}. Some of its work was funded through the EUROCODE project (2006 -2008) where quality indicators were developed³ and through an INTERDEM JPND project ‘Dementia Outcome Measures: Charting new territory’ (2014 -2015)⁴.

Several funded research programmes have focussed on the theme of people with dementia themselves. These include:

• involving people with dementia in research through Patient and Public (PPI) initiatives^5,6;
• capturing views of people with dementia on outcome measures^7,8and terminology⁹;
• exploring asset-based instruments for measuring wellbeing in people with dementia^10,11;
• novel methods of examining the views of people with dementia about their quality of life through use of personalised self- report instruments¹².

 

 Rationale for new methodologies

The longstanding ‘gold standard’ Randomised Control Trial (RCT) is not always the first port of call for developing evidence-based practice. RCT’s are often embedded in the UK MRC framework of 2000 (updated in 2006) ^{13, 14} for complex intervention research, where evidence development involves a lengthy process of 6-8 years, including assessing feasibility and acceptability, pilot testing, an RCT and implementation studies. This can delay urgently needed policies to advance dementia care practice. To accelerate uptake of innovations in dementia care, new designs and methods that involve stakeholders through all phases of the development and evaluation of complex interventions are required.

Speaking at the World Dementia Council: Global dialogue on psychosocial research in dementia ¹⁴ Bob Woods noted that while there is evidence on the efficacy of psychosocial interventions in dementia (e.g. Cochrane/ systematic reviews) that rely on RCTs, important methodological considerations are needed to advance future research ¹⁵. These include: specificity of what we are aiming for with a given intervention, differentiating between therapeutic processes-for example those requiring skilled therapists versus enhancing meaningful pleasurable activities (e.g. creative arts/ intergenerational initiatives); and understanding individual and contextual differences (i.e. what works for whom in which context and situation, why and how?);  aspects associated with the context and adaptation that is required for different cultures, political systems, healthcare systems; and cultural values within various family care systems (for transcript see¹⁵ pages 21-25).

Many areas of psychosocial intervention research in dementia care and support now require methodological advancement. For example, we need:

• more tailor-made methods, focussing on the right-fit between the research question(s) and the methodology used to answer these;
• methodologies to incorporate knowledge of the processes that a practitioner/ therapist require to follow, in delivering a new intervention in their care settings;
• studies of underlying working mechanisms of a given intervention (what might work – and not work- for whom, why and how) as these relate to real-life settings, such as the context of delivery and the impact of the socio-political systems;
• methodology that embraces intervention complexity in real-world settings such as ‘spontaneous change’ and other properties that lend themselves to system- thinking approaches;
• further development of meaningful outcome measurement that are applicable to the concept of the intervention as well as the real-world of people with dementia and those that support them;
• further development of methodologies on the emerging topic of co-design and evaluation of psychosocial interventions¹⁶, undertaken together with people with dementia, caregivers, professionals, policymakers and other stakeholders.

The current UK MRC framework (updated 2021) adopts a wider scope¹⁷. It includes a ‘range of detailed guidance on specific topics and methods’ ¹⁷. The authors recommend that:

1. the framework should be continually updated by taking a pluralist approach (i.e. a frame and meta-guidance), including different new research designs, approaches and methodologies in and between (or outside) the MRC phases.
2. guidance is published in a web-based format, which is frequently updated with new materials, resources and case studies to enhance knowledge about new methodologies as they emerge for a given topic.

New methodological approaches are emerging, such as growing interest in realist evaluations and reviews ^{18, 19}, theory-driven intervention development and evaluation^20-22, pragmatic trials and participatory action research^23-25 that are closer to the real world of the people we serve and that acknowledge the value of involving all those concerned.

Therefore there is a need for novel methodologies applied to psychosocial research in dementia care.

(For references ^1-25 see Introduction and Background References).

1. Moniz-Cook E, Vernooij-Dassen M, Woods R, Verhey F, Chattat R, de Vugt M, Mountain G, O’Connell M, Harrison J, Vasse E, Dröes RM, & Orrell M For the INTERDEM group. (2008) A European consensus on outcome measures for psychosocial intervention research in dementia care Aging & Mental Health 12,14- 25. doi: 10.1080/13607860801919850
2. Vernooij Dassen M & Moniz-Cook E (2014) Raising the standard of applied care research: addressing the implementation error Aging & Mental Health 18, 809-14. doi: 10.1080/13607863.2014.89997
3. Vasse E, Moniz-Cook E, Olde Rikkert M, Cantegreil I, Charras K, Dorenlot P, Fumero G, Franco M, Woods B, Vernooij-Dassen. M. (2012) The development of quality indicators to improve psychosocial care in dementia. Psychogeriatics 24, 921-30
4. https://www.neurodegenerationresearch.eu/wp-content/uploads/2015/10/JPND-Report-Fountain.pdf
5. Gove, D., Diaz-Ponce, A., Georges, J., Moniz-Cook, E., Mountain, G., Chattat, R., Øksnebjerg, L. & The European Working Group of People living with dementia (2018) Alzheimer Europe’s position on involving people living with dementia in research through PPI (Patient and Public Involvement), Aging & Mental Health, 22 (6), 723-729. doi: 10.1080/13607863.2017.1317334.
6. Roberts, C., Rochford-Brennan, H., Goodrick, J., Gove, D., Diaz-Ponce, A., & Georges, J. (2020). Our reflections of patient and public involvement in research as members of the European Working Group of People with Dementia. Dementia,19, 1, 10-17. doi: 10.1177/1471301219876402.
7. Øksnebjerg L., Diaz-Ponce, A., Gove, D., Moniz-Cook, E., Mountain, G., Chattat, R. and Woods, B. (2018). Towards capturing meaningful outcomes for people living with dementia in psychosocial intervention research: a pan-European consultation Health Expectations, 21, 6, 1056 – 1065 https://doi.org/10.1111/hex.12799
8. Bhatt, J., Stoner, C. R., Scior, K., & Charlesworth, G. (2021). Adaptation and preliminary psychometric properties of three self-stigma outcome measures for people living with dementia. BMC Geriatrics, 21 (1), 1-12. doi: 10.1186/s12877-020-01983-0.
9. Wolverson, E, Dunn, R., Moniz-Cook, E. Gove, D. and Ponce-Diaz, A. (2021). The language of behaviour changes in dementia care: the perspectives people with dementia Journal of Advanced Nursing, 77, 4, 1992-2001 https://doi.org/10.1111/jan.14787
10. Clarke, C., Woods, B., Moniz-Cook, E., Mountain, G., Øksnebjerg, L., Chattat, R., Diaz, A., Gove, D., Vernooij-Dassen., M and Wolverson, E (2020) Measuring the well-being of people with dementia: a conceptual scoping review. Health & Quality of Life Outcomes,18, 249 https://doi.org/10.1186/s12955-020-01440-x
11. ** Clarke, C., Baird, K., Moniz‐Cook, E., Mountain, G., Wolverson, E., Lee, E., & Hewitt, C. (2025). A psychometric study of the Flourishing Scale for people living with dementia.Alzheimer’s & Dementia: Translational Research & Clinical Interventions, 11(2), e70097 A psychometric study of the Flourishing Scale for people living with dementia – Clarke – 2025 – Alzheimer’s & Dementia: Translational Research & Clinical Interventions – Wiley Online Library
12. Hendriks, I., Demetrio, R., Meiland, F.J.M., Chattat, R., Szcześniak, D., Rymaszewska, J., Evans, S.B., Atkinson, T. Farina, E., Saibene, F.L., Gerritsen, D., Dröes, R.M. (2021). Value of personalized versions of dementia-specific quality of life scales; An explorative study in three European countries Am J Alz Disease & other Dementias36,1-9. doi: 10.1177/15333175211033721.
13. Medical Research Council, MRC (2000) A Framework for Development and Evaluation of RCTs for Complex Interventions to Improve Health. London: Medical Research Council
14. Craig P, Dieppe P, Macintyre S, Michie S, Nazareth I, Petticrew M. (2006) Developing and Evaluating Complex Interventions. London: Medical Research Council
15. Woods R. (2021): Psychosocial Interventions for People living with dementiaIn Global dialogue on psychosocial research in dementia: the dementia landscape project.  World Dementia Council October2021 DLP – Transcript – Psychosocial.pdf (worlddementiacouncil.org)pp 21 -25
16. Lord, K., Kelleher, D., Ogden, M., Mason, C., Rapaport, P., Burton, A., … & Cooper, C. (2022). Co-designing complex interventions with people living with dementia and their supporters. Dementia, 2, 1,426-441. doi: 10.1177/14713012211042466. Epub 2021 Dec 30.
17. Skivington K, Matthews L, Simpson SA, Craig, P Baird B, Blazenby, JM, Boyd KA, Craig N, French DP, McIntosh E, Petticrew, M & Rycroft-Malone J.  (2021) A new framework for developing and evaluating complex interventions: update of Medical Research Council guidance, BMJ, 374:n2061 https://doi.org/10.1136/bmj.n2061
18. Duddy C. & Wong G. (2023) Grand rounds in methodology: when are realist reviews useful, and what does a ‘good’ realist review look like? BMJ Quality & Safety 32, 173-180. DOI: 10.1136/bmjqs-2022-015236
19. Jack K. (2022) What is realist evaluation? Evidence-Based Nursing,  25,111-113. doi: 10.1136/ebnurs-2022-103608. Online ahead of print.
20. Gilissen, J., Pivodic, L., Wendrich-van Dael, A., Gastmans, C., Vander Stichele, R., Van Humbeeck, L., … & Van den Block, L. (2019). Implementing advance care planning in routine nursing home care: the development of the theory-based ACP+ program. PLoS One, 14, 10, e0223586. doi:10.1371/journal.pone.0223586.
21. Gilissen, J., Pivodic, L., Gastmans, C., Vander Stichele, R., Deliens, L., Breuer, E., & Van den Block, L. (2018). How to achieve the desired outcomes of advance care planning in nursing homes: a theory of change. BMC Geriatrics, 18,1, 1-14. DOI: 10.1186/s12877-018-0723-5
22. de Nooijer, K., Pivodic, L., Van Den Noortgate, N., Pype, P., Evans, C., & Van den Block, L. (2021). Timely short-term specialized palliative care service intervention for older people with frailty and their family carers in primary care: Development and modelling of the frailty+ intervention using theory of change. Palliative Medicine, 35, 10, 1961-1974. DOI: 10.1177/02692163211040187
23. Fogg, C., Lanning, E., Shoebridge, J., Longstaff, J., De Vos, R., Dawson-Taylor, K., … & Chauhan, A. (2022). The role of Participatory Action Research in developing new models of healthcare: Perspectives from participants and recommendations for ethical review and governance oversight. Ethics, Medicine and Public Health,24, 100833. https://doi.org/10.1016/j.jemep.2022.100833.
24. Hsieh, C. J., Yin, P. F., Chiu, C. Y., Hsiao, Y. P., & Hsiao, Y. L. (2022). Support and Empowerment for Older Adult Spousal Caregiving of People with Mild and Moderate Dementia: A Participatory Action Research. In Healthcare,10,3,569  https://www.mdpi.com/2227-9032/10/3/569
25. Harkin, D., Coates, V., & Brown, D. (2022). Exploring ways to enhance pain management for older people with dementia in acute care settings using a Participatory Action Research approach. Older People Nurs.17, e12487 https://doi.org/10.1111/opn.12487

Chairs: Prof. Dr. Martina Roes (martina.roes@dzne.de)

Co-chair: Franziska Laoporte Uribe, PhD (franziska.laporte-uribe@dzne.de)

Contact: viktoria.peters-nehrenheim@dzne.de

Established: 2019 Annual INTERDEM meeting at Alzheimer Europe, Barcelona.

Updated: May 2025

Background: This taskforce was initiated in October 2019 with the name ‘intercultural care’. Over the course of time while diving deeper into different concepts linked to ‘intercultural care’ our focus shifted toward a critical reflection of the concepts ‘context, culture, and intersectionality’. We therefore re-named our taskforce.

Context: We aim to analyze and understand how the respective constellations differ from locality to locality, from time to time, and from context to context. Understanding context means understanding both the external and internal influences on a healthcare provider, an organization or an individual. External contextual influences on an organization could be for example health policy and economics, the role of the different professions or social and ideological movements. Internal contextual influences within an organization could be linked to its culture and leadership, staff skills and personalities, or the perspective of the care recipients.

The purpose for us is to analyze context through an intersectional lens, for example to understand one’s social position which might change along the lines of citizenship (e.g. for immigrants) or using social determinants of health characteristics to understand social positioning within the dementia care context.

Culture: The use of the concept of culture (or interculture/intercultural) is very common in dementia care research. Although the term culture is often used, there is a lack of agreement on how to define it and what it encompasses. It nevertheless provides us with and awareness that different people bring a different set of experiences, expectations and predispositions to the field of dementia – whether they are people living with the disease, caregivers, health professionals or researchers. We argue, that addressing cultural can benefit from an intersectional lens, asking questions such as: who produces the text [knowledge/meaning/interpretation/discourse], what is the societal positioning of a person [within a society / the health care system / in research etc.], what were societal circumstances of the production (e.g. coming from a high-income country or writing as an indigenous person representing an ethnic minority).

The purpose for us is to understand how to engage intersectionality as a lens to conceptualize culture and societal positioning specifically of people living with dementia and their social network in different European countries and to identify way, how this changes dementia care research.

Intersectionality: Intersectionality comes from the work of black feminist scholars and activists. Intersectionality is a theoretical framework rooted in the premise that human experience is jointly shaped by multiple societal positioning (e.g. ethnicity, gender, age), social health determinants, and cannot be adequately understood by considering social positions independently.

Examples for personal characteristics [1]

 

Intersectionality argues that personal identities such as gender, age, education, ethnicity, sexuality, and other markers of difference intersect and reflect large social structures of power, oppression and privilege.

Intersectionality argues that large power structures intersect and lead to oppression and privilege based on our social positioning such as ethnicity, age, gender, education, sexuality within the society we live in.

The purpose for us is to critically reflect on the framework of intersectionality, its translational potential and ways of applying it to dementia care research.

[2]

Overall aims

This INTERDEM Taskforce ‘context, culture, and intersectionality’ aims to bring an intersectional lens to dementia care and research with the aim of going beyond understanding inequality and inequity. Our overall understanding is, that we need to move away from the assumption that everyone is positioned equally, which means that we need to start thinking from the perspective of difference. We need to acknowledge, that we are all (1) different in the first place and therefore (2) need to understand why existing theories, interventions, health frameworks don’t work for everyone, and (3) how to overcome these conceptual gaps. Therefore, the often-used research outcome of ‘generalization’ will be challenged and we will need to understand how to conduct research differently and still meet overarching requirements in research.

This is linked to the objective to improve the understanding of the mechanism of health (care) disparities and how these affect the amount and quality of care received by a person with dementia and their significant others / social network. Intersectional approaches help to identify inequity and inequality within and between groups of people but also within health care systems based on the way multiple facets of an individual’s identity interact. An intersectional approach also helps to examine data practices, processes, and institutions reflectively.

It’s in our interest to ‘use’ intersectionality as an analytical framework or analytical sensibility, in some ways resulting in us ‘doing’ it.

Objectives of the taskforce

We aim to embed innovative methodologies into dementia care research, specifically intersectionality as a research topic and applying an intersectional lens in dementia care research. More methodological work is required to (1) ensure researchers understand key features that define intersectionality analyses, (2) improve reporting practices for intersectional analyses, and (3) develop and adapt designs and methods.

Additionally, there is a need to better understand how to engage and involve underrepresented population groups (often excluded based on their personal characteristics) in research, either as co-researchers or as study participants.

Moreover, we need to develop an idea of how to use an intersectional lens when conducting reviews, since intersectionality refers to the examination of how multiple social identities intersect to shape the production and interpretation of texts within various contexts.

As a taskforce we aim to provide high quality training and consultancy to other INTERDEM taskforces as well as collaborate across taskforces, members and particularly to the INTERDEM academy as we are committed to equity not just for people living with dementia and families but our researchers too. We feel strongly about intersectionality cutting across psychosocial dementia research and therefore will be committed to helping peers and colleagues in achieving and applying and intersectional lens.

References (used above)

1. Bauer GR, et al. (2021) Intersectionality in quantitative research: A systematic review of its emergence and applications of theory and methods. SSM Popul Health. 2021 Apr 16;14:100798. doi: 10.1016/j.ssmph.2021.100798. PMID: 33997247; PMCID: PMC8095182.
2. Kelly, C., et al. (2021) ‘Doing’ or ‘using’ intersectionality? Opportunities and challenges in incorporating intersectionality into knowledge translation theory and practice. Int J Equity Health 20, 187 (2021). https://doi.org/10.1186/s12939-021-01509-z
3. Roes et al. (2022) Intersectionality and its relevance for research in dementia care of people with a migration background. Z Gerontol Geriatr. 2022 Jul;55(4):287-291. English. doi: 10.1007/s00391-022-02058-y. Epub 2022 Apr 7. PMID: 35391538.

Ongoing Activities 2024/2025

• Involved in the JPND founded project
  Innovations in diversity and Equity in Social health research in Dementia [INTEREST] Project lead Prof. Louise Hopper (Dublin City University, Ireland)
  (please add website link on interdem website)
  • Neal D. et al. (2025) Effective for Whom? A Review of Psychological and Social Intervention Recommendations in European Dementia Care Guidelines Through the Lenses of Social Health and Intersectionality.  Sci.2025, 15, 457. https://doi.org/10.3390/bs15040457
  • Wei, Roes et al. (under review) What are the unmet needs in people affected by dementia? A scoping review of reviews.
  • Roes & Wei et al. (in preparation) Secondary analysis of the scoping review of unmet needs through an intersectional analysis
  • Involved in discussing health disparities with the European Working Group of People with Dementia (EWGPWD) as well as the Caregiver Dementia Working Group (EDCWG) (both embedded in Alzheimer Europe)
• Frontiers Dementia:
  Co-Editor of a Special issue on Diversity and inclusive practices in dementia care
  see call: https://www.frontiersin.org/research-topics/66900/diversity-intersectionality-and-inclusive-practices-in-dementia-care-and-research
  • Roes M et al. [Taskforce Action] [in preparation] Scoping review on intersectionality research in dementia care
  • Kuebra Altinol (Interdem Academy) (under review) Intersectional research in dementia care of people from culturally and linguistically diverse background: A scoping review
  • Wei, Roes et al. (under review) What are the unmet needs in people affected by dementia? A scoping review of reviews.
  • Roes & Wei et al. [in preparation] Secondary analysis of the scoping review of unmet needs through an intersectional analysis
• Developing a Guideline for Inclusive Dementia Research (G-IDR)
  Project Lead Carolien Smits at Pharos, Netherland
• Across Taskforce Special Interest Group (SIG) on Relationships, Intimacy, and Sexuality [contact person: Hannah Christie]
• Position paper on stigmatization [contact person: Golnaz Atefi]
• Future research priorities for gender-sensitive non-pharmacologic therapies to reduce dementia-related symptoms in people with dementia – using Priority Setting Partnership [GenderDem] (starts in July 2025)
  Project Lead Prof. Martina Roes

Dissemination since 2021

• Alzheimer Europe Conference [Oct. 2025, Bologna]
  Interdem Symposium on the JPND funded project INTEREST
• Alzheimer Europe Conference [Oct. 2025, Bologna]
  plenary session Topic: Gender and sexuality in dementia
  Topic: Understanding the needs, wishes, and experiences of lesbian, gay, bisexual or transgender (LGBT) people
• Alzheimer Europe Conference [Oct 2024, Geneva] Topic: Interdem Symposium together with the taskforce Inequalities in Dementia Care
• Nursing Science Symposium Improving research impact for families experiencing acute-critical illness at the Institute for Implementation Science in Health Care (IfIS), University of Zurich [Jan 2024] Topic: Complex implementation challenges – addressing implementation Equity
• Interdem Academy Spotlight [Dec 2023, virtual] Topic: How can dementia care research benefit from an intersectional lens?
• FPO Conference at UK Hull University [June 2022, virtual] Topic: Lens of Intersectionality – What is it all about?
• GSA Conference [Nov. 2022, Indianapolis] Topic: Building and Leveraging Community Partnership that Embrace Diversity, Enrich Discovery, and Reimagine Aging (Presidential Symposium)
• Alzheimer Europe Conference [Oct. 2022, Bucharest]:
  Topic: Interdem Symposium Applying an intersectional lens in dementia care research
• Social Health Taskforce [May 2021, virtual] Topic: Social Heath through the Lens of Intersectionality

Frequency of meetings

Virtual meetings every month: either the large group or smaller groups, with a focus on a specific task such as conducting the scoping review, discussing progress of INTEREST)

Additionally, in-person meetings at the annual AE conference.

Meetings in 2025: 10-11.30 am (German time) virtually

21^st Feb., 21^st March, 23^rd May, 20^th June, 18^th July, 15^th Aug., 19^th Sept, 17^th Oct., 21^st Nov, 19th Dec

Members (alphabetical order)

	Name	Institution	e-Mail	Interdem	Position
1	Kuebra Altinok	DZNE Witten, Germany	kuebra.altinok@dzne.de	Academy	junior
2	Golnaz Atefi	Maastricht University, NL	g.atefi@maastrichtuniversity.nl	Academy	postDoc
3	Saloua Berdai	Vrije University, Belgium	saloua.berdai@kdg.be		postDoc
4	Jem Bhatt	University of London, United Kingdom	jemini.bhatt.15@ucl.ac.uk; jemini.bhatt@ucl.ac.uk	Academy	PostDoc
5	Georgina Charlesworth	University of London, United Kingdom	g.charlesworth@ucl.ac.uk	yes	Professor
6	Rabih Chattat	University of Bologna, Italy	rabih.chattat@unibo.it	yes	Professor Interdem Board
7	Ann Claey	Vrije University, Belgium	Ann.claeys@vub.be		junior
8	Hannah Christie	Maastricht University, NL	hannah.christie @maastrichtuniversity.nl	Academy	PostDoc
9	Simone Anna Felding	DZNE Witten, Germany	SimoneAnna.Felding@dzne.de	Academy	Junior
10	Clarissa Giebel	University of Liverpool, U.K.	Clarissa.Giebel@liverpool.ac.uk	yes	postDoc
11	Silvia Gonella	Department of Public Health and Pediatrics, University of Torino	silvia.gonella@unito.it		Assistant Professor of Nursing (RUTD – B)
12	Diane Gove	Alzheimer Europe, Luxembourg	dianne.gove@alzheimer-europe.org	yes	PostDoc
13	Catrin Jones	University of Worchester, United Kingdom	Catrin.jones@worc.ac.uk	yes	postDoc
14	Franziska Laporte Uribe	DZNE Witten, Germany	Franziska.Laporte-Uribe@dzne.de	yes	postDoc
15	Nicole Mueller	University College Cork, Ireland	nicole.muller@ucc.ie	yes	Professor
16	Shadreck Mwale	Geller Institute of Ageing and Memory, School of Biomedical Sciences, University of West London	Shadreck.Mwale@uwl.ac.uk	yes	Associate Professor
17	Sahdia Parveen	Bradford University, United Kingdom	S.Parveen27@bradford.ac.uk	yes	Associate Professor
18	Martina Roes	DZNE Witten, Germany	Martina.Roes@dzne.de	yes	Chair, Interdem Board
19	Kritika Samsi	King’s College London, U.K.	kritika.1.samsi@kcl.ac.uk	yes	PostDoc
20	Carolien Smits	Pharos, NL	C.Smits@pharos.nl	yes	Co-Chair
21	Huerrem Tezcan	Alice Salomon University of Applied Science, Germany	tezcan@ash-berlin.eu		Professor
22	René Thyrian	DZNE Greifswald, Germany	Rene.Thyrian@dzne.de	yes	Professor
23	Chantal Van Audenhove	KU Leuven, Belgium	chantal.vanaudenhove@kuleuven.be	yes	PostDoc
24	Bryony Waters	Nottingham University, U.K.	Bryony.Waters1@nottingham.ac.uk	Academy	Junior
Retired
	Aud Johannessen:	University of South-Eastern Norway USN, Norway	Aud.Johannessen@usn.no	Yes / retired	Retired Professor

Publications by members as 1^st or co-authors (corresponding articles)

Annac K, Basyigit M, Öztürk S, Örs ER, Aksakal T, Kuhn C, Rutenkröger A, Tezcan-Güntekin H, Yilmaz-Aslan Y, Brzoska P. Diversity-On: A Diversity-Sensitive Online Self-Help Program for Family Caregivers-A Protocol for a Mixed Methods Study. J Adv Nurs. 2024 Sep 10. doi: 10.1111/jan.16443. Epub ahead of print. PMID: 39253765.

Berdai Chaouni S, Claeys A, van den Broeke J, De Donder L. Doing research on the intersection of ethnicity and old age: Key insights from decolonial frameworks. J Aging Stud. 2021 Mar;56:100909. doi: 10.1016/j.jaging.2020.100909. Epub 2020 Nov 28. PMID: 33712097.

Berdai Chaouni S, Smetcoren AS, De Donder L. Caring for migrant older Moroccans with dementia in Belgium as a complex and dynamic transnational network of informal and professional care: A qualitative study. Int J Nurs Stud. 2020 Jan;101:103413. doi: 10.1016/j.ijnurstu.2019.103413. Epub 2019 Sep 6. PMID: 31678839.

Bhatt, J. (2024). The influence of stigma on disclosure decision-making in people affected by dementia (Doctoral dissertation, UCL (University College London).

Bhatt J, Kohl G, Scior K, Charlesworth G, Muller M, Dröes R-M. Comparing the stigma experiences and comfort with disclosure in Dutch and English populations of people living with dementia. Dementia. 2023;22(7):1567-1585. doi:10.1177/14713012231188503

Bhatt J, Scior K, Stoner CR, Moniz-Cook E, Charlesworth G. Stigma among UK family carers of people living with dementia. BJPsych Open. 2022 Oct 7;8(6):e179. doi: 10.1192/bjo.2022.585. PMID: 36205002; PMCID: PMC9634559.

Bhatt J, Stoner CR, Scior K, Charlesworth G. Adaptation and preliminary psychometric properties of three self-stigma outcome measures for people living with dementia. BMC Geriatr. 2021 Jan 9;21(1):34. doi: 10.1186/s12877-020-01983-0. PMID: 33422016; PMCID: PMC7796608.

Bosma C, Smits C. Behavioral changes in migrants with dementia: Experiences of professional caregivers. Z Gerontol Geriatr. 2022 Jul;55(4):281-286. English. doi: 10.1007/s00391-022-02057-z. Epub 2022 Apr 8. PMID: 35394191.

Cheston R, Dodd E, Smith P, Woodstoke NS, Jutlla K, Fry G, Truswell D, Butt J, Parveen S. “You just can’t do that in dementia care”: Barriers to partnership working within dementia services for people from south Asian communities. Dementia (London). 2024 Sep 14:14713012241283189. doi: 10.1177/14713012241283189. Epub ahead of print. PMID: 39277785.

Giebel C, Harding E, Volkmer A, Chirico I, Hopper L, Szczesniak D, Talbot CV, Diaz-Ponce A, Gove D, Knapp M, Robinson L, Rahman-Amin M, Thyrian R, Hanna K; INTERDEM Taskforce on Inequalities in Dementia Care. The landscape of inequalities in dementia across Europe: First insights from the INTERDEM taskforce. Int J Geriatr Psychiatry. 2024 May;39(5):e6096. doi: 10.1002/gps.6096. PMID: 38719786.

Giebel C (2024) A new model to understand the complexity of inequalities in dementia. Int J Equity Health 23, 160 (2024). https://doi.org/10.1186/s12939-024-02245-w

Gove D, Nielsen TR, Smits C, Plejert C, Rauf MA, Parveen S, Jaakson S, Golan-Shemesh D, Lahav D, Kaur R, Herz MK, Monsees J, Thyrian JR, Georges J. The challenges of achieving timely diagnosis and culturally appropriate care of people with dementia from minority ethnic groups in Europe. Int J Geriatr Psychiatry. 2021 Dec;36(12):1823-1828. doi: 10.1002/gps.5614. Epub 2021 Aug 18. PMID: 34378237; PMCID: PMC9291493.

Kohl, G., Ulate, M.M., Bhatt, J., Scior, K. and Charlesworth, G. (2021), Factors associated with disclosing a diagnosis of dementia to one’s social network: A systematic review. Alzheimer’s Dement., 17: e056146. https://doi.org/10.1002/alz.056146

Neal D., Bartels S., Berdai Chaouni S., […] Giebel C. […], Roes M. et al. (2025) Effective for Whom? A Review of Psychological and Social Intervention Recommendations in European Dementia Care Guidelines Through the Lenses of Social Health and Intersectionality. Behav. Sci. 2025, 15, 457. https://doi.org/10.3390/bs15040457

Peters-Nehrenheim V, Rommerskirch-Manietta M, Purwins D, Roes M, Tezcan-Güntekin H. Care preferences of older migrants and minority ethnic groups with various care needs: a protocol for a scoping review. BMJ Open. 2022 Nov 21;12(11):e061712. doi: 10.1136/bmjopen-2022-061712. PMID: 36410833; PMCID: PMC9680146.

Roes M, Laporte Uribe F, Peters-Nehrenheim V, Smits C, Johannessen A, Charlesworth G, Parveen S, Mueller N, Hedd Jones C, Thyrian R, Monsees J, Tezcan-Güntekin H. Intersectionality and its relevance for research in dementia care of people with a migration background. Z Gerontol Geriatr. 2022 Jul;55(4):287-291. English. doi: 10.1007/s00391-022-02058-y. Epub 2022 Apr 7. PMID: 35391538.

Shafiq S, Parveen S, Oyebode JR. How people of African Caribbean or Irish ethnicity cope with long-term health conditions in UK community settings: A systematic review of qualitative, quantitative and mixed method studies. Health Soc Care Community. 2021 Mar;29(2):319-327. doi: 10.1111/hsc.13181. Epub 2020 Oct 7. PMID: 33025714.

Tezcan-Güntekin H, Özer-Erdogdu I, Yilmaz-Aslan Y, Aksakal T, Bird R. Ethical and Methodological Challenges in Research With Hard-to-Reach Groups: Examples From Research on Family Caregivers for Migrant Older Adults Living With Dementia. Gerontologist. 2022 Jul 15;62(6):823-831. doi: 10.1093/geront/gnab179. PMID: 34875066; PMCID: PMC9290906.

Yilmaz-Aslan Y, Annac K, Aksakal T, Yilmaz H, Merz S, Wahidie D, Razum O, Brzoska P, Tezcan-Güntekin H. What Self-Management Skills Do Turkish Caregivers Have in Caring for People with Dementia? Results of a Qualitative Survey. Healthcare (Basel). 2024 Jun 12;12(12):1187. doi: 10.3390/healthcare12121187. PMID: 38921301; PMCID: PMC11202945.

 

[1] https://researchguides.library.syr.edu/fys101/intersectionality

[2] https://www.cultureamp.com/blog/why-intersectionality-matters

Lead (s): Professor Jacqueline Parkes, University of Northampton (UK); Co- lead Dr Leah Macaden, University of Edinburgh, (Scotland, UK)

Contact:  Jacqueline.parkes@northampton.ac.uk

Established: May 2025

Background/Rationale:

The new INTERDEM Education and Training Taskforce will play a key role in identifying, researching/evaluating, and developing evidence-based education and training for health and social care professionals, students and researchers which focuses on psychosocial care and support (including psychosocial interventions) throughout the dementia journey across Europe and beyond. The Taskforce will collaboratively engage with all INTERDEM Taskforces to identify contemporary knowledge and scientific evidence which will underpin the creation of a European Dementia Education and Training Framework.

Problem to be addressed:

In some European countries, National Knowledge and Skills Frameworks in the field of Dementia Support and Care have been in existence for at least a decade; however, there is limited research which evaluates the widespread application or impact of these frameworks in improving the knowledge and skills of health and social care professionals who support people living with dementia and their family. Some European countries may already be in the process of developing their local, regional, and national dementia education and training standards and frameworks or have not yet embarked on such a task and may feel they could benefit from an opportunity to share knowledge and understanding in relation to the design and delivery of education and training that enhances the knowledge and skills of professionals, students, and researchers working in this field. Currently, there does not appear to be a European-wide Knowledge, competencies, and Skills Framework, with associated training standards, which could underpin the effective psychosocial care and support of individuals impacted by cognitive decline. Ultimately, this Taskforce will identify new educational opportunities across Europe and beyond (where relevant); design research to identify the key components of courses/ programmes i.e. the content to be included, and the effective andragogical/ pedagogical approaches to delivery i.e. how training should be delivered. Ultimately, the aim will be to develop some guiding education/training principles and strategies, which could underpin a European Knowledge and Skills Framework and Standards; and disseminate the findings and recommendations.

Aims: The purpose of this Dementia Education and Training Task Force will be to:

1. Exchange good practices from our respective countries regarding dementia care and support education (WHAT students/researchers/health and social care professionals learn and develop; HOW students/researchers/care professionals learn and develop).
2. Collaboratively engage with other INTERDEM Taskforces to identify and develop contemporary research evidence which can underpin dementia education and training for students/researchers/health and social care professionals.
3. Develop guiding principles and strategies for the design, development, evaluation and implementation of education and training for health and social care professionals, students, and researchers who work, or will work, on the frontline with people living with dementia and their families, as part of the future workforce.
4. Identify the factors influencing the uptake of education and training for students, researchers, and health and social care professionals working in different settings.

Activities:

Phase 1: Development Tasks

• Broaden the expertise and knowledge-base of the Taskforce Team to include more representation from the INTERDEM area e.g. Including more East EU countries and diverse population groups.
• Establish effective collaborations with INTERDEM Taskforces to work on specific dementia-related education and training needs and requirements i.e. younger onset dementia etc.
• Undertake a review of dementia education and training opportunities (modules, courses, programmes, and bespoke Continuing Professional Development days) which focus on timely psychosocial care and support throughout the dementia journey for both the person living with dementia and their families. These opportunities can be for health and social care professionals and students.
• Collaborate with expert-by-experience groups (including people with dementia eg. The EWGPWD, family caregivers, health and social care professionals, educators, students and researchers) to provide a perspective on the format and content of training for health and social care professionals in delivering effective and timely psychosocial support throughout the dementia journey.
• Compare the content, delivery format, level of assessment, and skills development to share knowledge, competencies and learning, from example of good practices with the aim of developing a common core framework, while celebrating and respecting country-specific aspects.

Phase 2: Implementation Tasks

• Identify key factors (facilitators and barriers) to the uptake of training and education of health and social care professionals working in different settings across Europe.
• The development of a future output for example, a European wide Framework, or set of guiding principles.
• Disseminate the findings and recommendations of the education and training inventory and evaluative comparisons via Taskforce Meetings, Journal Publications, Conference Events, and the Annual Alzheimer Europe INTERDEM meeting.

Planned Frequency of meetings: initially monthly via an online platform

References:

1. NHS England, Dementia Training Standards Framework, https://www.skillsforhealth.org.uk/resources/dementia-2015-updated-2018/
2. Social Care Wales (2016) Good Work Dementia Learning and Development Framework for Wales
3. https://socialcare.wales/cms-assets/documents/Good-Work-Dementia-Learning-And-Development-Framework.pdf
4. Ottoboni, G., Chirico, I., Povolná, P., Dostálová, V., Holmerová, I., Janssen, N., Dassen, F., de Vugt, M., Sánchez-Gómez, Ma. C., García-Peñalvo, F., Franco-Martin, M. A., & Chattat, R. (2021). Psychosocial care in dementia in European higher education: Evidence from the SiDECar (“Skills in DEmentia Care”) project. Nurse Education Today, 103, 104977. https://doi.org/10.1016/j.nedt.2021.104977
5. Surr, C. A., Gates, C., Irving, D., Oyebode, J., Smith, S. J., Parveen, S., Drury, M., & Dennison, A. (2017). Effective Dementia Education and Training for the Health and Social Care Workforce: A Systematic Review of the Literature. Review of Educational Research, 87(5), 966-1002. https://doi.org/10.3102/0034654317723305
6. The Higher Education for Dementia Network (HEDN) https://hedn50472928.wordpress.com/five-year-strategy-2022-2027/ Dementia UK and HEDN [including Knifton, C. as one of the author contributors] (2013) Curriculum for Dementia Education.

Task Force members

1. Dr. Jacqueline Parkes, Professor of Applied Mental Health, UON Dementia Research and Innovation Centre, University of Northampton. UK
2. Ir. Leonie Copraij Windesheim University of Applied Sciences, Division Health and Social Care, Research Group Living Well with Dementia, the Netherlands
3. Dr. Stephanie Daley, Reader in Mental Health & Dementia, Brighton and Sussex Medical School. UK
4. Dr. ir. Simone de Bruin, Professor Living well with Dementia, Windesheim University of Applied Sciences, Division Health and Social Care, Research Group Living Well with Dementia, the Netherlands
5. Dr. Ulla Eloniemi-Sulkava,  Institute of Public Health and Clinical Nutrition, University of Eastern Finland, Finland
6. Yvonne Feeney, PhD student, University: Brighton and Sussex Medical School, UK
7. Dr. Catrin Hedd Jones, Dementia studies lecturer, Dementia Services Development Centre (DSDC), Bangor University, Wales. UK
8. Dr Chris Knifton, Associate Professor in Teaching and Learning (Neurocognitive and Neurodevelopment care), De Montfort University, UK
9. Dr. Leah Macaden, Senior Lecturer in Nursing Studies, School of Health in Social Science, University of Edinburgh, Scotland.
10. Dr. Franka Meiland, Amsterdam University Medical Center, Department of Medicine for Older people, the Netherlands.
11. Dr. Martina Roes, Professor for Nursing Science and Health Care Research, University of Witten/Herdecke, Faculty of Health, Department of Nursing Science, Witten, Germany
12. Dr Anthony Scerri, Senior Lecturer, Department of Nursing/Faculty of Health Sciences,
13. University of Malta.
14. Dr. Charles Scerri, Professor of Dementia Studies, Department of Pathology, Faculty of Medicine & Surgery, University of Malta.
15. Dr. Carolien Smits, Department of Older Adults and HealthPharos, the Netherlands
16. Dr. Ozgul Uysal, Assistant Professor, Erasmus School of Social and Behavioural Sciences, the Netherlands.
17. Dr Alison Ward, Deputy Director Research, Evidence and Impact, Dementia UK   

Publications: [The publications provided by team members reflect the skills and strengths within the team and therefore include papers on dementia research, education and training and public involvement and engagement].

1. Attard, R., Sammut, R., & Scerri, A. (2020). Exploring the knowledge, attitudes and perceived learning needs of formal carers of people with dementia. Nursing older people, 32(3).
2. Banerjee S, Jones C, Wright J, Grosvenor W, Hebditch M, Feeney Y, Mackrell S, Nilforooshan R, Fox C, Bremner S, Daley S, 2021, A comparative study of the effect of the Time for Dementia programme on medical students, International Journal of Geriatric Psychiatry, http://doi.org/10.1002/gps.5532
3. Banerjee S, Farina N, Daley S, Grosvenor W, Hughes L, Hebditch M, Mackrell S, Niforooshan R, Wyatt C, de Vries K, Haq I, Wright J, 2017, How do we enhance undergraduate healthcare education in dementia? A review of the role of innovative approaches and development of the Time for Dementia programme, International Journal of Geriatric Psychiatry, 32, 68-75
4. Bickford B, Daley S, Sleater G, Hebditch M, Banerjee, S, 2019, Understanding compassion for people with dementia in medical and nursing students, BMC Medical Education, 19:35 https://doi.org/10.1186/s12909-019-1460-y
5. Cashin, Z, Daley S, Hebditch M, Hughes L, Banerjee S, 2019, Involving people with dementia and their carers in dementia education for undergraduate healthcare professionals: a qualitative study of motivation to participate and experience, International Psychogeriatrics, 31, 6, 869-876 http://dx.doi.org/10.1017/S1041610218001357
6. Chamberlain, l., Anderson, C., Knifton, C., and Madden G (2018) Suicide risk in informal carers of people living with dementia. Nursing Older People. RCNi
7. Daley S, Hebditch M, Feeney Y, Pooley J, Pietersen H, Banerjee S, 2023, Understanding the experiences of people with dementia and their family carers participating in healthcare student dementia education: a mixed-methods evaluation from the Time for Dementia programme, Dementia, ttps://journals.sagepub.com/doi/epub/10.1177/14713012231191412
8. Daley, S, Hebditch, M, Jones, C, Bremner S, Feeney Y, Towson G, Wright J, Banerjee S, 2023, Time for Dementia: quantitative evaluation of a dementia education programme for healthcare students, International Journal of Geriatric Psychiatry, e5922. https://doi.org/10.1002/gps.5922
9. Daley S, Feeney Y, Grosvenor W, Hebditch M, Morley L, Sleater G, Wright J, Banerjee S,2020, A qualitative evaluation of the effect of a longitudinal dementia education programme on healthcare student knowledge and attitudes, Age and Ageing, 1–7 doi:10.1093/ageing/afaa182
10. Feeney F, Daley S, Flaherty, Banerjee, 2021, Barriers and facilitators to implementing a longitudinal dementia education programme into undergraduate healthcare curricula: a qualitative study, BMC Medical Education, https://doi.org/10.1186/s12909-021-02632-9
11. Jones, C.H., Seddon, D., Algar-Skaife, K., Maddock, C. and Green, S. (2023), “Involving older adults and unpaid carers in the research cycle: reflections on implementing the UK national standards for public involvement into practice”, Quality in Ageing and Older Adults, https://www.emerald.com/insight/content/doi/10.1108/QAOA-03-2023-0019/full/html
12. Knifton, C., and Yates, S. (2019) A history of problematizations for dementia education. Journal of Nursing Research, ¾: 212-230.
13. Knifton, C. et al (2019) Dementia education in HEIs: now and in the future. Journal of nursing Reserach. 24: 271-278.
14. Knifton, C. (2019) Learning disability and dementia. In, Harison dening, K (ed) Evidence –based practice in dementia for nurses and nursing students. London: Jessica kingsley.
15. Knifton, C (2018) Teaching students to be knowledgeable and compassionate about dementia care. Nursing Older People, RCNi
16. Knifton, C., et al (2014) Making a difference in dementia education: developing a consistent and inclusive approach for all. Journal of Dementia Care, 22(4): 18-21
17. Lyons, V., Oliver, E., Knifton, C., and Molesworth S. (2022) Role of Admiral nurses in supporting people with learning disabilities and dementia. Learning disability Practice [online] 12/05/22
18. Macaden L (2016). Being Dementia Smart (BDS): A Dementia Nurse Education Journey in Scotland. International Journal of Nursing Education Scholarship. Volume 13, Issue 1, ISSN (Online) 1548-923X, ISSN (Print) 2194-5772, DOI: 10.1515/ijnes-2015-0019.
19. Macaden L, Muirhead K (2024). Dementia Education for Workforce Excellence: Evaluation of a Novel Bichronous Approach. Healthcare. 12(5):590. https://doi.org/10.3390/healthcare12050590
20. Muirhead K, Macaden L, Smyth K, Chandler C, Clarke CL, Polson R, O’Malley CT (2022). The Characteristics of Effective Technology-enabled Dementia Education: A Systematic Review and Mixed Research Synthesis https://doi.org/10.1186/s13643-021-01866-4
21. Muirhead K, Macaden L, Smyth K, Chandler C, Clarke CL, Polson R, O’Malley CT (2021). Establishing the Effectiveness of Technology-enabled Dementia Education for Health and Social Care Practitioners. https://doi.org/10.1186/s13643-021-01781-8.
22. Muirhead K, Macaden L, Clarke CL, Smyth K, Polson R, O’Malley CT (2019). The characteristics of effective technology enabled dementia education for health and social care practitioners: Protocol for a mixed studies systematic review. Systematic Reviews, https://doi.org/10.1186/s13643-019-1212-4
23. Parkes, J.H, Pyer, M., Wray, P. and Taylor, J. (2014) Partners in projects: preparing for public involvement in health and social care research. Health Policy. 117(3), pp. 399-408. 0168-8510.
24. Parkes, J., O’Malley, M., Stamou, V., La Fontaine, J., Oyebode, J.R., Carter, J. (2022) Lessons learnt from delivering the public and patient involvement forums within a younger onset dementia project. Dementia; the international journal of social research and practice, 21 (7), pp. 1-14.
25. Scerri, A., & Scerri, C. (2013). Nursing students’ knowledge and attitudes towards dementia—a questionnaire survey. Nurse Education Today, 33(9), 962-968.
26. Scerri, A., Innes, A., & Scerri, C. (2017). Dementia training programmes for staff working in general hospital settings–a systematic review of the literature. Aging & mental health, 21(8), 783-796.
27. Scerri, A., & Scerri, C. (2019). Outcomes in knowledge, attitudes and confidence of nursing staff working in nursing and residential care homes following a dementia training programme. Aging & mental health, 23(8), 919-928.
28. Scerri, A., Innes, A., & Scerri, C. (2020). Person-centered dementia care in acute hospital wards—The influence of staff knowledge and attitudes. Geriatric Nursing, 41(3), 215-221.
29. Scerri, A., & Schembri, P. (2022). Acute medical and surgical nurses’ knowledge and attitudes towards ageing and older persons. Educational Gerontology, 48(5), 224-236.
30. Scerri C. (2021) Developing a skilled workforce: impact of a postgraduate programme on dementia knowledge, attitudes and training needs. The Journal of Prevention of Alzheimer’s Disease 8(1): 117-118. https://doi.org/10.14283/jpad.2020.52
31. Saccasan N, Scerri C. (2020) Dementia knowledge, attitudes and training needs of speech-language pathology students and practitioners: a countrywide study. International Journal of Language and Communication Disorders 55(6): 955-970. https://doi.org/10.1111/1460-6984.12574
32. Scerri C. (2018) Dementia: creating a knowledge-based healthcare profession. The Journal of Prevention of Alzheimer’s Disease 5(1): 85-86. http://dx.doi.org/10.14283/jpad.2017.43
33. Scerri C. (2017) Knowledge of Alzheimer’s disease and training needs in final year medical and pharmacy students. Journal of Aging Research & Clinical Practice 6: 9-13. http://dx.doi.org/10.14283/jarcp.2016.122
34. Zerafa N, Scerri C. (2016) Knowledge and pharmacological management of Alzheimer’s disease by managing community pharmacists: a nationwide study. International Journal of Clinical Pharmacy 38: 1416-1424. https://doi.org/10.1007/s11096-016-0380-8
35. Schack Thoft, D., M. Pyer, Horsbol, A, Parkes, J.H. (2018) The Balanced Participation Model: sharing opportunities for giving people with early-stage dementia a voice in research. Dementia: the international journal of social research and practice, Dec, pp. 0-20. https://doi.org/10.1177/1471301218820208
36. Ward, A., and Dobson, M. (2014) Dementia awareness training and the lessons learned. The Journal of Practice Teaching and Learning, 12(3), 25-43. DOI: 10.1921/8002120304
37. Williams M & Daley S, 2020, Innovation in dementia education within undergraduate healthcare   programmes: a scoping review, Nurse Education Today, https://doi.org/10.1016/j.nedt.2020.104742
38. Wonnacott L, Banerjee S, Hicks B, Daley S, 2023, Understanding the experience of Time for Dementia Education Programme on Undergraduate Radiography Students, Radiography, https://doi.org/10.1016/j.radi.2023.02.020