Taskforces

INTERDEM has various Taskforces in which committed members work together. These are reviewed on a yearly basis usually after the annual meeting.

INTERDEM Task Forces Guidelines

Current Taskforces are:

Young-onset Dementia

Leads: Dr. Christian Bakker, Radboudumc Alzheimer Center, Nijmegen, The Netherlands Christian.Bakker@radboudumc.nl (lead); Dr. Esther Gerritzen, Institute of Mental Health, University of Nottingham, Nottingham, United Kingdom esther.gerritzen@nottingham.ac.uk (co-lead).

Contact: Esther Gerritzen esther.gerritzen@nottingham.ac.uk

Established: 2023 Annual INTERDEM meeting at Alzheimer Europe, Helsinki, Finland.

Background 

In the past decades psychosocial research in young-onset dementia has focused on themes such as the exploration of lived experiences of individuals with dementia onset prior to the age of 65 and their families, the course of care and support needs, and the development of psychosocial support. Previous research emphasizes the unique challenges faced by people living with young-onset dementia and their families and underlines the multifaceted nature of its psychosocial impact. For instance, given the low prevalence of young-onset dementia1, the specific care needs of this particular group are easily overlooked in dementia healthcare2. People living with young-onset dementia often experience stigma, and face challenges in employment, social contexts, and in maintaining a sense of identity and wellbeing3-5. Furthermore, young-onset dementia can be associated with a heightened caregiver burden and strains on interpersonal relationships and family dynamics6, 7.

People with young-onset dementia and their families experience a lack of fit between their needs and preferences, and existing dementia care and support services (including psychosocial support)2, 8. This may not be surprising as these services have been developed with the needs of those living with dementia in old age in mind. There have been few research projects aimed at the development of care and support in young-onset dementia. This includes research regarding interventions aimed at supporting people living with young-onset dementia to keep engaged and socially connected9, 10 and support programs for caregivers11, demonstrating promise in enhancing overall well-being of those affected and their families. However, further research is essential to expand supportive strategies in young-onset dementia with a more personalized, integrative, and family oriented approach.

Overall aim

Since there are differences in dementia care systems across Europe, this INTERDEM Taskforce aims to improve care and psychosocial support for people with young-onset dementia, and to establish how this can best be integrated into current social and healthcare systems.

Activities for 2024 – 2026

  • Establish workstreams around relevant themes in young-onset dementia. Based on recent literature and identified needs of people living with young-onset dementia the taskforce will set up workstreams around the following themes:
    • Dementia in the workplace
    • Care pathways in young-onset dementia
    • Online support

Every workstream will establish a workplan for the upcoming year (September 2024) and will be led by a Senior and an Academy member.

  • Identify and prioritize other themes that should be addressed by the taskforce and set up workstreams accordingly. This will be done through literature search and consulting people living with young-onset dementia, potentially through existing PPI networks of the taskforce members, and the European Working Group for People With Dementia (EWGPWD) and European Dementia Carers Working Group (EDCWG) (2024-2026).
  • Establish an outline for a young-onset dementia track in the INTERDEM Academy for early career researchers in this particular area (October 2024)
  • Establish a research agenda on psychosocial support and supportive strategies in young-onset dementia (September 2025).
  • Explore opportunities to set up research projects crossing borders (2024 – 2026).

Frequency of planned meetings

Online meetings two times per year. Additionally, in-person meetings will be organized at least one time a year, around major conferences (e.g. IPA and AE). We will also accommodate more frequent separate meetings for the workstreams within the taskforce, after these have been established.

References

  1. Hendriks, S., et al., Global Prevalence of Young-Onset Dementia: A Systematic Review and Meta-analysis. JAMA Neurol, 2021.
  2. Bakker, C., M. Verboom, and R. Koopmans, Reimagining Postdiagnostic Care and Support in Young-Onset Dementia. J Am Med Dir Assoc, 2021.
  3. O’Malley, M., et al., Receiving a diagnosis of young onset dementia: a scoping review of lived experiences. Aging Ment Health, 2021. 25(1): p. 1-12.
  4. Millenaar, J.K., et al., The Impact of Young Onset Dementia on Informal Caregivers Compared with Late Onset Dementia: Results from the NeedYD Study. Am J Geriatr Psychiatry, 2016. 24(6): p. 467-74.
  5. Chirico, I., et al., Family experience of young-onset dementia: the perspectives of spouses and children. Aging Ment Health, 2022. 26(11): p. 2243-2251.
  6. Bruinsma, J., et al., The quality of the relationship perceived by spouses of people with young-onset dementia. Int Psychogeriatr, 2020: p. 1-10.
  7. Bodde, H.E., J.M. Papma, and J.M. Poos, Disentangling factors that influence the spousal relationship of people with young-onset dementia: starting points for person-centered care and support? Int Psychogeriatr, 2024: p. 1-8.
  8. Loi, S.M., M. Cations, and D. Velakoulis, Young-onset dementia diagnosis, management and care. Med J Aust, 2023. 219(2): p. 90.
  9. Bielderman, A., et al., Evaluation of the SPAN intervention for people living with young-onset dementia in the community and their family caregivers: a randomized controlled trial. Aging Ment Health, 2024. 28(2): p. 275-284.
  10. Gerritzen, E.V., McDermott, O., & Orrell, M. (2023). Online peer support: views and experiences of people with Young Onset Dementia (YOD). Aging Ment Health, 2023. 27(12). p 2386-2394
  11. Bruinsma, J., et al., Tailoring and evaluating the web-based ‘Partner in Balance’ intervention for family caregivers of persons with young-onset dementia. Internet Interv, 2021. 25: p. 100390.

 Members

  1. Britt Appelhof – Radboud University Medical Center, Nijmegen, The Netherlands
  2. Christian Bakker – Radboud University Medical Center, Nijmegen, The Netherlands (lead)
  3. Sara Bartels – Maastricht University, The Netherlands
  4. Hanna Bodde – Erasmus Medical Center, Rotterdam, The Netherlands
  5. Janet Carter – University College London, United Kingdom
  6. Rabih Chatat – University of Bologna, Italy
  7. Laura Cole – University of West London, United Kingdom
  8. Esther Gerritzen – University of Nottingham, United Kingdom (co-lead)
  9. Stevie Hendriks – Maastricht University, The Netherlands
  10. Rianne de Heus – Radboud University Medical Center, Nijmegen, The Netherlands
  11. Aysegul Kafadar – University of Nottingham, The Netherlands
  12. Tibor Kovacs – Semmelweis University, Hungary
  13. Raymond Koopmans – Radboud University Medical Center, Nijmegen, The Netherlands
  14. Laura Lebec – University of West Scotland, United Kingdom
  15. Patricia Masterson Algar – Bangor University, United Kingdom
  16. Orii McDermott – University of Nottingham, United Kingdom
  17. Jan Oyebode – University of Bradford, United Kingdom
  18. Janne Papma – Erasmus Medical Center, Rotterdam, The Netherlands
  19. Jackie Parkes – University of Northampton, United Kingdom
  20. Jackie Poos – Erasmus Medical Center, Rotterdam, The Netherlands
  21. Louise Ritchie – University of West Scotland, United Kingdom
  22. Bo Smeets – Maastricht University, The Netherlands
  23. Catherine Talbot – Bournemouth University, United Kingdom
  24. Marianna Tsatali – Greek Alzheimer Association, Greece
  25. Marjolein de Vugt – Maastricht University, The Netherlands
  26. Rachel Watson – Dementia UK, United Kingdom
  27. Emma Wolverson – University of Hull & Dementia UK, United Kingdom

 

 

Palliative and End of Life Care in Dementia

Leads:

Emma Wolverson, University of Hull and Dementia UK  e.wolverson@hull.ac.uk; Karen Harrison Dening, Dementia UK Karen.Harrison-Dening@dementiauk.org; Jenny van der Steen, Leiden University Medical Center, Leiden, The Netherlands; Radboud university medical center/Radboudumc Alzheimer Center, Nijmegen, The Netherlands j.t.van_der_steen@lumc.nl

Contact person e.wolverson@hull.ac.uk

Date TF began: May 2023

Updated: March 2024

Background:

The number of people with dementia who have palliative care needs continues to increase and globally is now the seventh leading cause of death among all diseases 1. The leading cause of death varies across countries, for example, in the UK dementia is the leading cause of death2. There is growing interest in palliative and end of life care in dementia including how to empower better care across settings 3 and in developing recommendations to support optimal care4.  This taskforce will look to provide direction by identifying research priorities that have the potential for developing evidence-based support.

Aims

The taskforce aims for the first year were:

  • To establish a new palliative and end of life care INTERDEM taskforce across Europe with researchers from all career stages
  • To engage taskforce and wider INTERDEM members to collaboratively establish research priorities for the taskforce
  • To raise awareness of the new taskforce within INTERDEM and within the wider palliative care research community.

Aims (update March 2024):

  • To systematically review the evidence base related to psychosocial and spiritual support for those with advanced dementia and consider whether ‘Domain 8. Psychosocial and spiritual support’ of the White Paper defining optimal Palliative care in older people with dementia requires updating.
  • To map palliative care provision for people with dementia across different European countries within our task force.
  • To explore the information given to people with dementia and their families about assisted dying across Europe.

Activites:

Activity planned Proposed Timeline Update March 2024
To recruit members from across Europe – leads to send direct emails to members who have published in this area or who have an interest in the area, to contact academy lead to share invite. May- September 2023 Achieved invites sent to all INTERDEM members listing interests in palliative and end of life care. Invite also circulated via INTERDEM newsletter.  We remain open to new members joining.
To develop a database of all INTERDEM members research projects in this field. June 2023 Ongoing.  All members have completed a brief online survey of interests and expertise – the aim to create a narrative CV for the taskforce.
First online TF meeting September 2023 Achieved. Meetings also held in October (in person), December 2023 and February 2024. ( see appendix)
Agree taskforce priorities October- December 2023 3 priorities have been agreed and leads for each priority area identified (see  March 2024 Aims update).

 Taskforce members

  1. Zeena Aldridge (NHS Norfolk and Waveney ICB, UK),
  2. Arleen Astell (Northumbria University, UK),
  3. Tofunmi Aworinde (King’s College London, UK),
  4. Tamara Backhouse (University of East Anglia, UK) ,
  5. Ana Barbosa (Bradford University, UK),
  6. Lieve Van den Block (Vrije Universiteit Brussel, Belgium),
  7. Nathan Davies (UCL, UK),
  8. Natashe Lemos Dekker (Leiden University, Netherlands),
  9. Marlise van Eersel (Universitair Medisch Centrum Groningen, Netherlands),
  10. Siren Eriksen (Norwegian Advisory unit on Ageing and Health / VID Spesialized University, Norway),
  11. Racheal Kelley (Leeds Beckett University, UK),
  12. Raymond Koopmans (Radboud University Medical Cente, Netherlands),
  13. Jean-Bernard Mabire (Fondation Mederic Alzheimer, France),
  14. Louise Robinson (Newcastle University, UK),
  15. Anne Marie Mork Rokstad (Norwegian National Advisory Unit on Ageing and Health and Molde University, Norway),
  16. Serena Sabatini (University of Surrey, UK),
  17. Hanneke Samlling (Leiden University, Netherlands).

Planned meetings:

The Taskforce has agreed to meet every two months.

References:

    1. World Health Organisation (2022). Dementia: Key Facts. Retrieved on 22/11/22 from Dementia (who.int)
    2. Office of National Statistics (2021). Leading causes of death, UK: 2021-2018, retrieved from Leading causes of death, UK – Office for National Statistics (ons.gov.uk)(Accessed 27 April 2023).
    3. Sampson, E.L., Anderson, J.E., Candy, B., Davies, N., Ellis‐Smith, C., Gola, A., Harding, R., Kenten, C., Kupeli, N., Mead, S. and Moore, K.J., 2020. Empowering better End‐of‐Life dementia care (EMBED‐Care): a mixed methods protocol to achieve integrated person‐centred care across settings. International Journal of Geriatric Psychiatry, 35(8), pp.820-832.
    4. Van der Steen, J.T., Radbruch, L., Hertogh, C.M., de Boer, M.E., Hughes, J.C., Larkin, P., Francke, A.L., Jünger, S., Gove, D., Firth, P. and Koopmans, R.T., 2014. White paper defining optimal palliative care in older people with dementia: a Delphi study and recommendations from the European Association for Palliative Care. Palliative medicine, 28(3), pp.197-209.

Appendix:

Meetings to date: 18th September 2023 (online);16th October 2023 (Interdem, Alzheimers Europe, Finland); 14th December 2023 (online); 13th February 2024 (online). See details here:  Palliative and EoL Care Minutes

Assistive Technology

Taskforce Assistive Technologies

Leads: Lizzy Boots, Alzheimer Centre Limburg, Maastricht University, Maastricht, The Netherlands l.boots@maastrichtuniversity.nl ; David Neal, Amsterdam University Medical Centre, Amsterdam, The Netherlands d.n.neal@amsterdamumc.nl

Contact: Lizzy Boots l.boots@maastrichtuniversity.nl

Established: 2012; Annual INTERDEM meeting, London UK

Updated April 2023 (new leadership)

Updated April 2024

Background 

Work towards understanding the contribution of Assistive Technologies (AT) has gathered momentum in recent years. In 2017 this taskforce reviewed 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.

Various challenges have been acknowledged 1. These include:

  • slow adoption, commercialisation and implementation of AT for people with dementia; lack of high quality scientific research into the effectiveness/cost-effectiveness of AT; limited attention to the needs of technology users, with respect to, for example, the aesthetics of technological support systems;
  • potential stigmatizing effects of dementia-specific technologies;
  • and the influence of technology on relationships between care-recipients and care-providers1.

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.   INDUCT (the Interdisciplinary Network for Dementia Using Current Technology (INDUCT) aimed at developing 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 2. Several publications in peer review journals have arisen from INDUCT, providing new insights towards bridging implementation, evidence and needs gaps, and some of its work was published in a recent book 3.  DISTINCT (Dementia: Intersectorial Strategy for Training and Innovation Network for Current Technology), building on INDUCT, further supports fifteen Early Stage Researchers (ESRs) across Europe and has already generated many peer-reviewed publications 4. The DISTINCT ESRs work within 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 5. Despite these successes, INDUCT and DISTINCT have only scratched the surface: major implementation, evidence and needs gaps remain.

Overall Aim

The ultimate goal of the INTERDEM AT Taskforce is to facilitate the successful development, evaluation and implementation of Assistive Technologies that can contribute to a better quality of life of people with dementia and their family carers as well as to good staff support and the organisation of dementia care.

The role of the AT taskforce continues going forward is towards achieving this goal, with continued facilitation of European collaboration to bridge the many and significant remaining implementation, evidence and needs gaps around AT.

We will do this by strengthening and expanding networks that bridge research and practice, by: maintaining consensus positions around current gaps and future direction; fostering collaborations; and seeking funding opportunities to address specific research questions.

Activities for 2024

  • Work on update of position paper (from 2017) on assistive technologies in dementia. A draft manuscript should be ready by the end of 2024.
  • Publish article: determinants and strategies of (un)successful implementation of assistive technologies in dementia care: an explorative survey in Europe – article submitted 6
  • 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. – Project Completed; article in Preparation

Frequency of Planned Meetings

The AT Taskforce generally meets four times per year online (see Appendix for minutes). In 2024 online meetings: 26.02.24 12.00 CET; 16.05.24 12.00 CEST; 10.09.24 10.00 CEST; 2.12.24 13.00 CET

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 (see Appendix).  In 2024, we expect to meet in person at the Alzheimer Europe conference in Geneva.

References

  1. 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
  2. INDUCT: https://www.dementiainduct.eu/
  3. 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.
  4. DISTINCT:https://www.dementiadistinct.com/;
  5. DISTINCT projects:ESRs Projects – DISTINCT (dementiadistinct.com)
  6. Roest HG, Christie HL, Franco-Martín MA, Dröes RM, de Vugt ME, Meiland FJM. Determinants of (un)successful implementation of research-based assistive technologies in dementia care: an explorative survey. Submitted (April 2024)

Members *

  1. Isabel Alexandre, University Institute of Lisbon, Portugal
  2. Golnaz Atefi, Maastricht University, the Netherlands
  3. Arlene Astell, University of Reading, UK
  4. Ana Barbosa, University of Bradford, UK
  5. Lizzy Boots – Maastricht University, The Netherlands (co-lead)
  6. Jeroen Bruinsma, Rabih Maastricht University, The Netherlands
  7. Dympna Casey, University of Galway, Ireland
  8. Rabih Chattat, University of Bologna, Italy
  9. Hannah Christie, Maastricht University, the Netherlands
  10. Michael Craven, University of Nottingham, UK
  11. Tom Dening, University of Nottingham, UK
  12. Priscilla Doyle, University of Galway, Ireland
  13. Rose-Marie Dröes, Amsterdam UMC (VUmc), The Netherlands
  14. Thomas Engelsma, Amsterdam UMC, the Netherlands
  15. Shirley Evans, University of Worcester, UK
  16. Katie Featherstone, University of West London, UK
  17. Lia Fernandes, University of Porto, Portugal
  18. Chris Fox, University of Exeter, UK
  19. Manuel Franco, Intras, Spain
  20. Lesley Garcia, University of Nottingham, UK
  21. Manuel Gonçalves-Pereira, Nova Medical School, Portugal
  22. Dianne Gove, Alzheimer Europe, Luxembourg
  23. Rikke Gregersen, VIA University College, Denmark
  24. Kyle Harrington, the University of Nottingham, UK
  25. Pascale Heins, Maastricht University, the Netherlands
  26. Eef Hogervorst, Loughborough University, UK
  27. Louise Hopper, Dublin City University, Ireland
  28. Maarten Houben, TU Eindhoven, the Netherlands
  29. Anthea Innes, McMaster University, Canada
  30. Sarah Janus, UMCG Groningen, the Netherlands
  31. Aysegul Kafada, University of Nottingham, UK
  32. Raymond Koopmans, Radboud UMC, Nijmegen
  33. Jenni Lynch, University of Hertfordshire, UK
  34. Franka Meiland, Amsterdam UMC (VUmc), The Netherlands
  35. Mauricio Molinari, University of Salamanca, Spain
  36. David Neal – UMC Amsterdam, The Netherlands (co-lead )
  37. Laila Øksnebjerg, University of Copenhagen, Denmark
  38. Giovanni Ottoboni, University of Bologna, Italy
  39. Jackie Poos, Erasmus UMC, the Netherlands
  40. Anne Margriet Pot, WHO, Switzerland / Erasmus UMC, The Netherlands
  41. Louise Robinson, Newcastle University, UK
  42. Anthony Scerri, University of Malta, Malta
  43. Duygu Sezgin, University of Galway, Ireland
  44. Hanneke Smaling, Leiden University MC, The Netherlands
  45. Sarah Smith, Leeds Beckett University, UK
  46. Josephine Tan, Amsterdam UMC, the Netherlands
  47. Daksha Trivedi, University of Hertfordshire, UK
  48. Henriette van der Roest, Amsterdam UMC (VUmc), The Netherlands
  49. Horst Vollmar, Ruhr-University Bochum, Germany
  50. Kay de Vries, The Gateway, De Montfort University, UK
  51. Marjolein de Vugt, Maastricht University, The Netherlands
  52. Tracy Williamson, University of Worcester, UK
  53. Emma Wolverson, University of Hull, UK
  54. Nahid Zokaei, University of Oxford, UK
  55. Syste Zuidema, University of Groningen, The Netherlands

* Taskforce listed in alphabetical order and includes non-INTERDEM members

Appendix: Symposia; Workshops; Meetings/Presentations

(i) Symposia

2018: Alzheimer Europe (Barcelona)

Symposium: P19 INTERDEM: Implementations of technologies to support people living with dementia and carers to include P19.4. INTERDEM Taskforce Assistive Technology: Follow-up on the position paper on assistive technologies

2017 Alzheimer Europe (Berlin)

P26 Symposium: Empowering Technologies in dementia care

2015: IPA Conference

Symposium: Technological support in dementia and late life depression

(ii) Workshops

29.06.2023: IPA conference (Lisbon)

INTERDEM Assistive Technologies Taskforce Workshop: Develop, implement and evaluate technology for social health in dementia: lessons in best practice from the European DISTINCT network

(iii) Meetings / Presentations

26.02.2024 Online taskforce meeting

04.12.2023 Online taskforce meeting, access minutes here

12.09.2023 Online taskforce meeting, access minutes here

16.10.2023 Annual INTERDEM Meeting (at Alzheimer Europe annual meeting) including taskforce update and taskforce meeting. Access here: Taskforce meeting minutes

25.05.2023 Online taskforce meeting, access minutes here

13.02.2023 Online taskforce meeting, access minutes here

 

 

Social Health

Leads: Myrra Vernooij-Dassen, Radboud University, The Netherlands; Dorata Szczesniak, Wroclaw Medical University, Poland; Marjolein de Vugt Maastricht University, The Netherlands.

Contact person: Myrra.Vernooij-Dassen@radboudumc.nl

Established: 2014 Alzheimer’s Europe, Glasgow, Scotland.

Background:

The concept of social health acknowledges that the person can experience well-being despite a medical condition by maintaining a dynamic balance between opportunities and limitations in the context of social and environmental challenges 1.  Social heaIth is essentially a relational concept representing the influence persons have on each other. It offers a valuable framework for the current fragmented knowledge base and new advances in dementia care. It can also be of great significance in de-stigmatising dementia and offering an alternative frame for the negative discourse that predominantly surrounds dementia. Furthermore, it can help us to understand the multi-factorial nature of dementia and explain some of the discrepancy between neuropathology, clinical symptoms and psychological or emotional consequences associated with the condition. Research needs to extend exploration of the role of biomarkers to including other influential factors such as social markers. However, only a minority of dementia studies explore in depth the social factors associated with the condition.This Social Health in dementia taskforce conceptualised the paradigm in a key publication entitled “social health and dementia: the power of human capabilities” 2, which was then operationalized 3 and further developed across two special issues of relevant empirical work on the topic 4,5.  This contributed to the second INTERDEM Manifesto and a hypothesis that ‘social health can act as the driver for accessing cognitive reserve in people with dementia, through active facilitation and utilization of social and environmental resources’ 6. The hypothesis guided other studies such as the influence of social activity on brain health and a large-scale JPND interdisciplinary programme – SHARED, which developed a conceptual a framework for potential social health markers / indicators 7, and published studies on the influence of social health on the onset and course of dementia 8. In another project, the gap between biomedical and social research was bridged between human and animal studies 8,9. The emerging work on the relationship between social health and cognition has scope to enhance the development of novel interventions. The additional value of the taskforce is to promote the theme of social health both in research as well as in practice beyond individual research projects.

Aim:

To collaborate with INTERDEM colleagues in research and writing on social health in dementia. The concept of social health constitutes is an umbrella concept covering a variety of social factors, markers or indicators. The goals are to promote the concept in integrated dementia research and to achieve successful development, evaluation and implementation of social health interventions. This has scope to bridge gaps between biomedical and social research and improve our understanding of the underlying mechanisms in the prevention of dementia as well as contributions to a better quality of life of people with dementia and their family carers.

Activities for 2023:

  • Organisation of symposia (Alzheimer Europe, IPA)
  • Provide overview of existing social health interventions in dementia and relevant outcome measures
  • Collaboration in a survey on social health operationalization
  • Publications relating to social health and dementia
  • Collaborate in research proposals and projects, also involving early career researcher from the INTERDEM Academy

References:

  1. Huber M, Knottnerus JA, Green L, van der Horst H. et al. (2011) How should we define health? BMJ. Jul 26;343:d4163. doi: 10.1136/bmj.d4163. PMID: 21791490.
  2. Vernooij-Dassen M, Jeon Y-H. ( 2016) Social health and dementia: the power of human capabilities. International psychogeriatrics. 2016;28(5):701-3.
  3. Dröes R, Chattat R, Diaz A, Gove D, Graff M, Murphy K, et al. ( 2017) Social health and dementia: a European consensus on the operationalization of the concept and directions for research and practice. Aging & mental health. 2017;21(1):4-17.
  4. de Vugt M, Dröes RM. ( 2017) Social health in dementia. Towards a positive dementia discourse. Aging Ment Health. (1): 1-3. doi: 10.1080/13607863.2016.1262822. PMID: 28098498.
  5. Vernooij-Dassen M, Moniz-Cook E, Jeon YH. ( 2018) Social health in dementia care: harnessing an applied research agenda. International Psychogeriatrics.30(6):775-8.
  6. Vernooij-Dassen M, Moniz-Cook E, Verhey F, Chattat R, Woods B, Meiland F, et al. (2021) Bridging the divide between biomedical and psychosocial approaches in dementia research: the 2019 INTERDEM manifesto. Aging Ment Health. 2021;25(2):206-12.
  7. Vernooij-Dassen M, Verspoor E, Samtani S, Sachdev PS, Ikram MA, Vernooij MW, et al. Recognition of social health: A conceptual framework in the context of dementia research. Front Psychiatry. 13:1052009.
  8. Samtani S, Mahalingam G, Lam BCP, Lipnicki DM, Lima-Costa MF, Blay SL, et al. Associations between social connections and cognition: a global collaborative individual participant data meta-analysis. Lancet Healthy Longev. 2022;3(11):e740-e53.
  9. van der Velpen IF, Melis RJF, Perry M, Vernooij-Dassen MJF, Ikram MA, Vernooij MW. Social Health Is Associated With Structural Brain Changes in Older Adults: The Rotterdam Study. Biol Psychiatry Cogn Neurosci Neuroimaging. 7(7):659-68.
  10. Lanooij SD, Eisel ULM, Drinkenburg W, van der Zee EA, Kas MJH. Influencing cognitive performance via social interactions: a novel therapeutic approach for brain disorders based on neuroanatomical mapping ? Mol Psychiatry. 28(1):28-33.
  11. Duffner, L. A., DeJong, N., Jansen, J. F., Backes, W., de Vugt, M., Deckers, K., & Köhler, S. (2023). Associations between social health factors, cognitive activity and neurostructural markers for brain health –a systematic literature review and meta-analysis. Ageing Res Rev. Jun 24;89:101986. doi: 10.1016/j.arr.2023.101986. Epub ahead of print. PMID: 37356551.
  12. Heins, P., Boots, L. M., Koh, W. Q., Neven, A., Verhey, F. R., & de Vugt, M. E. (2021). The effects of technological interventions on social participation of community-dwelling older adults with and without dementia: A systematic review. Journal of clinical medicine, 10(11), 2308.
  13. Stiekema, A. P. M., van Heugten, C. M., & de Vugt, M. E. ( 2019) Joining forces to improve psychosocial care for people with cognitive deficits across diagnoses: social helath as a common framwork Aging Ment Health. 10, 1275-1281. doi: 10.1080/13607863.2018.1498446.
  14. Duffner, L. A., Deckers, K., Cadar, D., Steptoe, A., De Vugt, M., & Köhler, S. (2022). The role of cognitive and social leisure activities in dementia risk: assessing longitudinal associations of modifiable and non-modifiable risk factors. Epidemiology and Psychiatric Sciences, 31, e5. Epidemiol Psychiatr Sci. 31:e5. doi: 10.1017/S204579602100069X.
  15. Duffner, L., Deckers, K., Cadar, D., Steptoe, A., de Vugt, M., & Köhler, S. (2022). Social health factors and dementia risk–assessing potential pathways in a population‐based cohort study. Alzheimer’s & Dementia, 18, e065441. https://doi.org/10.1002/alz.065441

Frequency of Meetings:

Three times per year

Members:

  • Astell, Arlene
  • Bakker, Christian
  • Bartels, Sara
  • Casey, Dympna
  • Chattat Rabih
  • Craven, Michael
  • Davies-Abbott, Ian
  • Deckers, Kay
  • Diaz, Ana
  • Dröes,  Rose-Marie
  • Dunn, Rosie
  • Evans, Shirley
  • Fernandes, Lia
  • Fonseca de Paiva, Andreia
  • Forstmeier, Simon
  • Garcia, Lesley
  • Gerritsen, Debby
  • Gerritzen, Esther
  • Giebel, Clarissa
  • Gonçalves-Pereira, Manuel
  • Gove, Dianne
  • Graff Maud
  • Harrington, Kyle
  • Heins, Pascale
  • Hoe, Juanita
  • Hopper, Louise
  • Hout Hein van
  • Hudson, John
  • Irving, Kate
  • Johannessen, Aud
  • Keady John
  • Köhler, Sebastian
  • Kristensen, Fritze
  • Laporte-Uribe, Franziska’
  • Lenart, Marta
  • Lion, Katarzyna
  • Machado Alexandre, Isabel
  • Mc Hugh, Joanna
  • McEvoy, Phil
  • Moniz-Cook Esmé
  • Neal, David
  • Oeksnebjerg, Laila
  • Oliveira, Deborah Christina de
  • Perry, Marieke
  • Rafnsson, Snorri Bjorn
  • Reilly, Siobhan
  • Roes, Martina
  • Stoner, Charlotte
  • Surr, Claire
  • Szczesniak, Dorota
  • Tan, R.J. Tatzer, Verena
  • Välimäki, Tarja
  • Verbeek, Hilde
  • Vernooij-Dassen, Myrra
  • Vugt de, Marjolein
  • Waters, Bryony
  • Wardt, Veronika van der
  • Wilcock, Jane
  • Wolf, Karin
  • Wolverson, Emma

Methodology

Novel designs and methodologies for complex intervention research in dementia care

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

Co-Lead:  Sara Laureen Bartles, Alzheimer Centrum Limburg, Maastricht University, Maastricht, The Netherlands  

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. Updated: 2023 New Leadership.

Updated: March 2024

Background

This taskforce was initiated early in the life of INTERDEM. It initially focused on outcome measurements (2003-4) and later on methodology1, 2. Some of its work was funded through the EUROCODE project (2006 -2008) during which quality indicators were developed3 and more recently through an INTERDEM-led 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) initiatives5,6;
  • capturing views of people with dementia on outcome measures7,8and terminology9;
  • exploring asset-based instruments for measuring wellbeing in people with dementia10; and
  • novel methods of examining the views of people with dementia about their quality of life through use of personalised self- report instruments11.

Rationale for current work

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) 12, 13 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. In order 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 the growing body of evidence on the efficacy of psychosocial interventions in dementia, to include Cochrane and other systematic reviews that rely on RCT studies, where pragmatic RCTs are closer to practice14. However, he noted important methodological issues for future consideration. 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?). He highlighted other important considerations for dementia care research, 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 see14, 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 interventions15, undertaken together with people with dementia, caregivers, professionals, policymakers and other stakeholders.

The current UK MRC framework (updated 2021) adopts a wider scope16. It includes a ‘range of detailed guidance on specific topics and methods’16. 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 17, 18, theory-driven intervention development and evaluation19-21, pragmatic trials and participatory action research22-24 that are closer to the real world of the people we serve and that acknowledge the value of involving all those concerned. Therefore, knowledge on how to design inclusive psychosocial intervention research is the next step for advancing methodology in dementia care research. This also has scope to raise awareness of alternative research approaches in dementia care and support for funders, reviewers and journal editors.

Overall Aims

  • To provide an initial 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;
  • To map and gain consensus on designs, research methodologies and approaches to address differing research aims in psychosocial intervention dementia research; and place them in, between or alongside the different phases of the current UK MRC framework16.
  • 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.

Activities for 2024/ 2025

Monthly meetings with the methodology taskforce to:

  • provide an initial overview of relevant methodologies and approaches for psychosocial interventions research placed within, between or alongside phases of the current MRC framework16; Timeline: 2024/2025 This will be done within our recent TF research award ( March 2024) METHODEM: Methodological consensus for complex Interventions in dementia (see Appendix for details)
  • prepare and circulate an online questionnaire to collect relevant (new) approaches to designs and methodologies for developing, evaluating or implementing psychosocial interventions research in dementia;
  • organise discussion and consensus meetings with INTERDEM researchers on placing relevant (new) methodologies and approaches in, between or alongside phases of the current MRC framework16; Timeline: In 2023/2024 this  occurred with TF members presenting on different topics (see Appendix)
  • continue share knowledge with presentations on examples of new methodologies for psychosocial interventions illustrated by different research projects at Taskforce meetings and more widely at conferences or webinars; Timeline: In 2023/2024 this  occurred with TF members presenting on different topics (see Appendix)
  • prepare consensus publications on new methodologies and approaches related to differing research aims for psychosocial interventions in dementia research – with recommendations for use within, between or alongside phases of the current MRC framework16; TimeLine:  This will be done within our recent TF research award ( March 2024) METHODEM: Methodological consensus for complex Interventions in dementia ( see Appendix for details)

Frequency of meetings:

Monthly (second Thursday of each month)

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
  2. Vernooij Dassen M & Moniz-Cook E (2014) Raising the standard of applied care research: addressing the implementation error Aging & Mental Health 18, 809-
  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 (2017) Alzheimer Europe’s position on involving people living with dementia in research through PPI (Patient and Public Involvement), Aging & Mental Health, 22, 723-729
  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.
  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.
  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 dementiaJournal 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. 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 Dementias 36,1-9
  12. Medical Research Council, MRC (2000) A Framework for Development and Evaluation of RCTs for Complex Interventions to Improve Health. London: Medical Research Council
  13. Craig P, Dieppe P, Macintyre S, Michie S, Nazareth I, Petticrew M. (2006) Developing and Evaluating Complex Interventions. London: Medical Research Council
  14. 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
  15. 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.
  16. 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
  17. 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.
  18. Jack K. (2022) What is realist evaluation? Evidence-Based Nursing,  25, 111-113
  19. 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.
  20. 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.
  21. 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.
  22. 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.
  23. 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
  24. 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

Taskforce Members:

 

Appendix (Deliverables July 2023 – March 2024)

Webinar – Invitation to INTERDEM as 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 – PowerPoint slides maud.graff@radboudumc.nl

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.nl or maud.graff@radboudumc.nl

Webinar- INTERDEM Spotlight series, invited by INTERDEM Academy (10.30-12.30, March 8th, 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, or  n.stephens@worc.ac.uk

 

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 stephens@worc.ac.uk
  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

 

Taskforce workshop at the Alzheimer Europe Conference (Finland) 2023:

This workshop was attended by 42 participants who joined either the whole or part of the workshop. Maud Graff presented the aims of the taskforce as well as an overview of (novel) methodologies and designs matching the MRC framework (i.e. core elements, develop/ identify intervention, feasibility, evaluation, implementation) as collected through taskforce meetings. Following, workshop attendees were asked to discuss additional methodologies and designs that match these phases in smaller groups. Finally, insights were gathered with the whole group, including potential challenges and benefits of these approaches.

Contact: maud.graff@radboudumc.nl

Part of our enthusiastic Taskforce: INTERDEM conference – Alzheimer Europe 2023:

Simone de Bruin, Esme Moniz-Cook, Maud Graff, Sara Laureen Bartels, Niels Janssen, & Hannah Christie  (from left to right).

 

Taskforce research award (March 2024) METHODEM: Methodological consensus for complex Interventions in dementia

Project summary: The Medical Research Council (MRC) framework guides the development, evaluation and implementation of complex interventions and is widely used in psychosocial dementia research. However, it is unclear if all MRC core elements are considered, which specific (novel) designs and methodologies are used and how stakeholders view these approaches. The METHODEM project aims to i) provide a comprehensive overview of novel designs and methodologies for research on psychosocial intervention in dementia care and ii) reach a consensus on these methodologies. The Methodology Taskforce of INTERDEM, a research network for Early, Timely, and Quality Psychosocial Interventions in Dementia, will conduct the project using two studies (i.e., systematic review; international Delphi study), also involving experts namely multi-disciplinary researchers, care professionals, policy makers, people with dementia and supporters through networks such as INTERDEM, ISTAART and Alzheimer Europe.

Grant/funder: 250,000USD, Number: 1250087, Alzheimer’s Association ALZ – Advancing Research on Care and Outcome Measurement (ARCOM)

Principal Investigator: Prof. dr. Maud Graff

Prevention

Leads: Prof. Dr. Sebastian Köhler, Dr. Kay Deckers, Maastricht University, The Netherlands; Prof. Dr. Jan Steyaert, Expertise Centrum Dementie Vlaanderen, Belgium

Contact Person: Sebastian Köhler: s.koehler@maastrichtuniversity.nl

Established: INTERDEM annual Meeting 2018, Barcelona, Spain

Updated: February 2024 – note This Task force was refreshed during a workshop at the INTERDEM annual meeting (Finland 2023).

Background

Dementia has long been considered a condition affected mainly by age and other non-modifiable factors such as gender and genetics. Over the past decades though, epidemiological studies have highlighted that the risk on dementia can significantly be reduced by addressing modifiable factors such as high blood pressure, physical inactivity, smoking, lack of challenging cognitive activities and social health.1-4 Also, these lifestyle factors need to be addressed at middle age (40 to 75y), as dementia is a condition that develops “in slow motion”, and deterioration of the brain may be going on for up to 20 years before it results in observable cognitive decline and functional dependence.1 However, this knowledge has not been well disseminated with many people being unaware that dementia risk can be partly reduced by adopting a healthy lifestyle.5-7 Studying modifiable risk factors and translation of epidemiological findings into interventions to promote brain health at the individual8-10 and population11-13 level has therefore become a main research priority and included in several, though still not all, national dementia plans.14

Overall Aim:

Our aim is to share knowledge and collaborate with INTERDEM colleagues and others in identifying modifiable risk factors, and in developing and implementing strategies to promote a brain-healthy lifestyle to reduce the risk on dementia for the coming decades.

 Activities 2024

  1.  Organisation of symposia on this topic (e.g. Alzheimer Europe, IPA)
  2. Collaborating in research proposals (e.g. applications submitted to Horizon Europe)
  3. Collaborating in epidemiological projects and prevention campaigns
  4. Organize exchanges/work visits of PhD students and staff (g. 2 work visits planned with Bradford University UK; Leipzig University, Germany)

 Frequency of meetings for 2024 – Three times per year (starting March 24)

 References

  1. Livingston, G., Huntley, J., Sommerlad, A., Ames, D., Ballard, C., Banerjee, S.,…, Mukadam, N. (2020). Dementia prevention, intervention, and care: 2020 report of the Lancet Commission. The Lancet, 396(10248), 413-446.
  2. World Health Organization. (2018). Guidelines on risk reduction of cognitive decline and dementia. Geneva: WHO.
  3. Deckers, K., van Boxtel, M. P. J., Schiepers, O. J. G., de Vugt, M., Muñoz Sánchez, J. L., Anstey, K. J.,…, Köhler, S. (2015). Target risk factors for dementia prevention: a systematic review and Delphi consensus study on the evidence from observation
  4. Rosenau, C., Köhler, S., Soons, L. M., Anstey, K. J., Brayne, C., Brodaty, H.,…, Deckers, K. (in press). Umbrella review and Delphi study on modifiable factors for dementia risk reduction. Alzheimer’s & Dementia.
  5. Heger, I., Deckers, K., van Boxtel, M., de Vugt, M., Hajema, K., Verhey, F., & Köhler, S. (2019). Dementia awareness and risk perception in middle-aged and older individuals: baseline results of the MijnBreincoach survey on the association between lifestyle and brain health. BMC Public Health, 19(1), 678.
  6. Kjelvik, G., Rokstad, A. M. M., Stuebs, J., Thingstad, P., Deckers, K., Köhler, S., & Selbæk, G. (2022). Public knowledge about dementia risk reduction in Norway. BMC Public Health, 22(1), 2046.
  7. Zülke, A. E., Luppa, M., Köhler, S., & Riedel-Heller, S. G. (2022). Knowledge of risk and protective factors for dementia in older German adults A population-based survey on risk and protective factors for dementia and internet-based brain health interventions. PLoS ONE, 17(11), e0277037.
  8. Heger, I., Deckers, K., de Vugt, M., Verhey, F., Oenema, A., van Boxtel, M., & Köhler, S. (2023). Using mHealth for primary prevention of dementia: A proof-of-concept study on usage patterns, appreciation, and beliefs and attitudes regarding prevention. Journal of Alzheimer’s Disease, 94(3), 935-948.
  9. Jones, D., Drewery, R., Windle, K., Humphrey, S., & de Paiva, A. F. (in press). Dementia prevention and the GP’s role: a qualitative interview study. British Journal of General Practice.
  10. Zülke, A. E., Pabst, A., Luppa, M., Roehr, S., Seidling, H., Oey, A., . . . Riedel-Heller, S. G. (2024). A multidomain intervention against cognitive decline in an at-risk-population in Germany: Results from the cluster-randomized AgeWell.de trial. Alzheimer’s & Dementia, 20(1), 615-628.
  11. Heger, I., Köhler, S., van Boxtel, M., de Vugt, M., Hajema, K., Verhey, F., & Deckers, K. (2020). Raising awareness for dementia risk reduction through a public health campaign: a pre-post study. BMJ Open, 10(11), e041211.
  12. Van Asbroeck, S., van Boxtel, M., Steyaert, J., Köhler, S., Heger, I., de Vugt, M.,…,Deckers, K. (2021). Increasing knowledge on dementia risk reduction in the general population: results of a public awareness campaign. Preventive medicine, 147, 106522.
  13. Paauw, D., Heger, I., Bjerre, J. F., Ringgaard, M. F., Stensgård, V., Horstkötter, D.,…,Deckers, K. (2024). Increasing awareness for dementia risk reduction through a public awareness campaign in Denmark: A pre-post study. Preventive Medicine, 179, 1.
  14. Steyaert, J., Deckers, K., Smits, C., Fox, C., Thyrian, R., Jeon, Y., Vernooij-Dassen, M., Köhler, S. (2021). Putting primary prevention of dementia on everybody’s agenda. Aging & Mental Health, 25(8):1376-80.

Members *

  1. Stephanie van Asbroeck (Maastricht University, NL)
  2. Tessa van Baal (Maastricht University, NL),
  3. Shannen Beadle (Mid Yorkshire Hospital, UK),
  4. Iris Blotenberg (DZNE German Center for Neurodegenerative Diseases, DE),
  5. Erika Borella (University of Padua, IT),
  6. Jeroen Bruinsma (Maastricht University, NL),
  7. Dympna Casey (University of Galway, IE),
  8. Rabih Chattat (University of Bologna, IT),
  9. Kay Deckers (Maastricht University, NL), co- Lead
  10. Jan DeLepeleire (KU Leuven, BE),
  11. Ana Diaz (Alzheimer Europe, LU),
  12. Priscilla Doyle (University of Galway, IE),
  13. Lukas Duffner (Maastricht University, NL),
  14. Lia Fernandes (University of Porto, PT),
  15. Christopher Fox (University of Exeter, UK),
  16. Lean Georges, (Alzheimer Europe, LU),
  17. Veerle van Gils (Maastricht University, NL),
  18. Rikke Gregersen (VIA University College, DK),
  19. Rowan Harwood (University of Nottingham, UK),
  20. Irene Heger (Maastricht University, NL),
  21. Juanita Hoe (University of West London UK),
  22. Eef Hogervorst (Loughborough University, UK),
  23. John Hudson (Lincoln University, UK)
  24. Ian Andrew James (Cumbria, Northumberland, Tyne and Wear NHS Foundation Trust, UK)
  25. Niels Janssen (Maastricht University, NL)
  26. Yun-Hee Jeon (University of Sydney, AUS)
  27. Danielle Jones (Bradford University, UK)
  28. Nathan de Jong (Maastricht University, NL)
  29. Leila Kautto (University of Helsinki, FI)
  30. Sebastian Köhler (Maastricht University, NL) – Lead
  31. David Maidment (Loughborough University, UK)
  32. Angela Mattison (Newcastle University, UK)
  33. Mauricio Molinari-Ulate (IDES, ES)
  34. Déborah Oliveira (University Andres Bello, BR)
  35. Dominique Paauw (Maastricht University, NL)
  36. Jacqueline Parkes (University of Northampton, UK)
  37. Paulo Pereira (University Nova Lisbon, PT)
  38. Nina Possemis (Maastricht University, NL)
  39. Snorri Rafnsson (University of West London, UK)
  40. Siobhan Reilly (Bradford University, UK)
  41. Steffi Riedel-Heller (University of Leipzig, DE)
  42. Louise Robinson (Newcastle University, UK)
  43. Anne Marie Mork Rokstad (Norwegian Center for Ageing, NO)
  44. Colin Rosenau (Maastricht University, NL)
  45. Kritika Samsi (Kings College London, UK)
  46. Sharon Savage (Newcastle University, UK)
  47. Felicity Slocombe (Bradford University, UK)
  48. Justine Schneider (University of Nottingham, UK)
  49. Birgitte Schoenmakers (KU Leeuven, BE)
  50. Carolien Smits (Pharos Expertise Center for Health Inequalities, NL)
  51. Lion Soons (Maastricht University, NL)
  52. Jan Steyaert (Expertise Centrum Dementie Vlaanderen, BE) – co- Lead
  53. Rene Thyrian (DZNE German Center for Neurodegenerative Diseases, DE)
  54. Lotte Truin (Maastricht University, NL)
  55. Myrra Vernooij-Dassen (Radboud UMC Nijmegen, NL)
  56. Marjolein de Vugt (Maastricht University, NL)
  57. Henrik Wiegelmann (University of Bremen, DE)
  58. Karin Wolf-Ostermann (University of Bremen, DE)
  59. Andrea Zülke (University of Leipzig, DE)

* Taskforce listed in alphabetical order and includes non-INTERDEM members

Appendix

March 2024 Meeting notes here

Intercultural aspects

Migration and dementia care research

(lead: Carolien Smits, Martina Roes and René Thyrian).

Established in 2019 @ Alzheimer Europe conference Barcelona

Problem to address: The prevalence of dementia in people with a migration background will increase strongly, because the number of people with a migration background getting older is rising significantly. Furthermore, several studies have shown that the migrant status influences dementia risk and that some migrant and minority groups have a higher likelihood of developing dementia. Individuals with a migration background assumes special relevance under a clinical, societal, and healthcare perspective. Research has shown that (-) some migrant groups might have an increased risk of dementia as compared to natives, (-) dementia is likely largely underdiagnosed among migrants, and (-) in all European countries access to appropriate dementia care is lagging for migrants with dementia and their carers. In light of these sociodemographic formations, it is imperative to adapt services, procedures and adjust dementia care research to the growing diversity of our populations.

Aim: To identify gaps in dementia care research using an intersectional lens and to provide recommendations for future research.

Activities:

  • Taskforce meetings focusing on writing papers:

(1) a mission paper on intersectionality within the context of migration and dementia care;

(2) a study protocol for a literature review from an intersectionality perspective;

(3) a scoping review on intersectionality in dementia care research.

Publications:

  • Mission paper: accepted for publication in ZGGG special issue on dementia and migration
  • Study protocol: in preparation

Inequalities in Dementia Care

Leads: Dr Clarissa Giebel & Dr Kerry Hanna, University of Liverpool, UK

Contact person:  Clarissa.Giebel@liverpool.ac.uk

Established: 2022, Alzheimer’s Europe Conference in Bucharest

Updated: March 2024

Background: People with dementia and their carers are facing various barriers in accessing and using good quality post-diagnostic dementia care. These include socio-economic background characteristics, living situation and area, cultural background, dementia subtype, and health and digital illiteracy. In addition, there are systemic barriers to accessing care, including how systems are funded, decision making processes about who receives financial support to access care, and training and support of the care workforce. Within the community, there can also be additional barriers.

Aims: Considering the different health and care infrastructures and population characteristics across Europe, we want to understand and learn from differences across countries. Outputs from this workforce can inform policy and decision-making.

The aims of this Taskforce are to:

  1. explore and address system-, community-, and individual-level inequalities in providing, accessing and using post-diagnostic dementia care across Europe;
  2. generate learnings for other countries where certain inequalities (incl. socio-economic, literacy, health infrastructure, digital) may be more pronounced than in others; and
  3. provide cross-country best practice/system recommendations for enabling more equitable dementia care across Europe.

This Taskforce aspires to have strong public, charity, non-academic stakeholder involvement. We will ensure that people with dementia and unpaid carers contribute to activities.

 Activities:

  • Position paper (with definitions) on system, community and individual level inequalities across Europe, and what this Taskforce sets out to achieve (Timeline: submitted to journal in autumn 2023)1
  • A systematic review into misdiagnosis of dementia (submitted March 2024) 2
  • A systematic review on solutions to inequalities in dementia diagnosis/care (Timeline: PROSPERO registered: CRD42024504882, searches being uploaded to COVIDENCE; to start  Stage 1 screen; to be completed Dec 2024)
  • Developing a joint grant proposal on solutions to inequalities in dementia diagnosis/care (Potential call under consideration to submit proposal 2024)
  • Identify suitable funding sources and start applying for joint funding

 Meeting frequency: bimonthly – see Appendix for dates

 References

  1.  Giebel C, Harding H, Volkmer A, Chirico I, Hopper L, Szczesniak D, et al. The landscape of inequalities in dementia across Europe: First insights from the INTERDEM Taskforce. Submitted November 2023, addressing revisions
  2. Giebel C, Silva-Ribeiro W, Watson J, Volkmer A, Chirico I, Diaz A, Heath B, Hanna K, Talbot C. A systematic review on the evidence of misdiagnosis in dementia and its impact on accessing dementia care. Submitted March 2024

Task Force Members *

  • Sara Bartels (Maastricht University, Netherlands/Karolinska Institute, Sweden);
  • Dympna Casey (University of Galway, Ireland);
  • Georgina Charlesworth (University College London, UK);
  • Rabih Chattat (University of Bologna, Italy);
  • Ilaria Chirico (University of Bologna, Italy);
  • Adelina Comas-Herrera (LSE, UK);
  • Ana Diaz (Alzheimer’s Europe, Luxembourg);
  • Simone Fielding (DZNE, Germany);
  • Debbie Gerritzen (Radboud University, Netherlands);
  • Clarissa Giebel (University of Liverpool, UK) – lead;
  • Diane Gove (Alzheimer’s Europe; Luxembourg);
  • Kerry Hanna (University of Liverpool, UK) – co-lead;
  • Bronte Heath (Alzheimer Society, UK);
  • Catrin Hedd Jones (Bangor, UK);
  • Eithne Heffernan (University of Nottingham, UK);
  • Louise Hopper (Dublin City University, Ireland);
  • Karan Jutlla (Wolverhampton, UK);
  • Sebastian Köhler (Maastricht University, Netherlands);
  • Martin Knapp (LSE, UK);
  • Fritze Kristensen (Aarhuis University, Denmark);
  • Orii McDermott (Nottingham, UK);
  • Naaheed Mukadam (UCL, UK)
  • Malayka Rahman-Amin (Alzheimer Society, UK);
  • Martina Roes (DZNE, Germany);
  • Miguel Padeiro (University of Coimbra, Portugal);
  • Louise Robinson (Newcastle University, UK);
  • Kritika Samsi (Kings College London, UK);
  • Duygu Sezgin (University of Galway, Ireland);
  • Carolien Smits (Pharos, Netherlands);
  • Jan Steyart (University of Antwerp Belgium);
  • Dorota Szcezniak (Wroclaw University, Poland);
  • Marjorlein Thijssen (Radboud University, Netherlands);
  • Rene Thyrian (DZNE, Germany);
  • Hilde Verbeek (Maastricht University, Netherlands);
  • James Watson (University of Liverpool, UK);
  • Gill Windle (Bangor, UK);
  • Karin Wolf-Osterman (Germany).

* Task force listed in alphabetical order and includes non-INTERDEM members

Appendix

Meeting Dates 

8th December 2022: 3rd February 2023; 28th April 2023; 16th June 2023; 4th September 2023; AE Conference – Helsinki (October 2023); 1st November 2023; 30th January 2024; 25th March 2024