ESR2

Improving peer support for people with young onset dementia (YOD)

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United Kingdom	University of Nottingham
Early Stage Researcher (ESR2) Esther Gerritzen	Supervisor(s)   Prof. Martin Orrell   Dr. Orii McDermott
Hello, my name is Esther Gerritzen and I am from the Netherlands. I have completed a BSc in European Public Health and a MSc in Health Education and Promotion, both at Maastricht University in the Netherlands. During my bachelor studies I conducted a placement at the University of South Australia where I was part of a research team working on an intergenerational dementia programme. During my master studies I worked as a research assistant at Alzheimer Centre Limburg where I provided support in eHealth interventions for informal carers of people with (young onset) dementia. I am particularly interested in combining dementia research with eHealth interventions. I am very grateful that I can be part of DISTINCT and I look forward to working together with people with Young Onset Dementia and their families to improve online peer support.
Start date	October 2019
Duration	36 months

Objectives

Peer-support is widely acknowledged as extremely beneficial for people with dementia and their supporters. Face-to-face peer support for people with YOD is often available in large cities but most people with YOD have limited opportunities to meet other people with YOD and become isolated. Younger people with dementia (onset below age 65) are familiar with everyday technologies and most use mobile phones and computers for work and social purposes. Various apps for smartphones and tablets are now available to help with everyday tasks (e.g. reminders) but insights into online resources to support psychological wellbeing of people with YOD are limited.

Objectives:

1. To analyse existing online peer support networks for people with YOD;
2. To develop best practice guidelines on online peer support for people with YOD.

Expected Results

This study includes a systematic review on online peer support for people with chronic, neurodegenerative conditions. Further, it includes an analysis of existing online peer support groups for people with YOD. The aim is to gain insights into the personal experiences of people with YOD with online peer support, and what elements make a platform useful for people with dementia. These findings will contribute to the development of best practice guidelines on online peer support for people with YOD. This study works closely with people with YOD as well as a wide range of other stakeholders. Both qualitative and quantitative methods will be used.

Planned secondment(s)

Two for approximately 3 months each. One with University College London to learn about (online) peer support and the priorities of people with YOD, and one with Maastricht University to learn about implementation and dissemination of online peer support for people with YOD and the best practice guidelines.

 

Dissemination

Publications:

1. Gerritzen, E.V., Kohl, G., Orrell, M., & McDermott, O. (2022). Peer support through video meetings: Experiences of people with young onset dementia. Dementia, 0(0) 10.1177/14713012221140468
2. Gerritzen, E.V., Lee, A.R., McDermott, O., Coulson, N., & Orrell, M. (2022). Online Peer Support for People with Multiple Sclerosis: a Narrative Synthesis Systematic Review. International Journal of MS Care, 24(6) 10.7224/1537-2073.2022-040
3. Gerritzen, E.V., Lee, A.R., McDermott, O., Coulson, N., & Orrell, M. (2022). Online Peer Support for People with Parkinson Disease: Narrative Synthesis Systematic Review. JMIR Aging, 5(3) 10.2196/35425
4. Gerritzen, E.V., McDermott, O., & Orrell, M. (2022). Development of Best Practice Guidance on Online Peer Support for People With Young Onset Dementia: Protocol for a Mixed Methods Study. JMIR Research Protocols, 11(7) 10.2196/38379
5. Lee A.R., Gerritzen E.V., McDermott O., Orrell M. (2021). Exploring the Role of Web-Based Interventions in the Self-management of Dementia: Systematic Review and Narrative Synthesis. Journal of Medical Internet Research, 23(7) 10.2196/26551

Presentations:

1. Gerritzen, E.V., McDermott, O., & Orrell, M. (2022, 17-19 October). Main findings of the DISTINCT projects on technology to promote social health [Symposium presentation]. 32nd Alzheimer Europe Conference. Bucharest, Romania.
2. Gerritzen, E.V., McDermott, O., & Orrell, M. (2022, 9-11 June). Benefits and challenges of peer support online: experiences of people with Young Onset Dementia [Poster presentation]. 35th Global Conference of Alzheimer’s Disease International, London, United Kingdom
3. Gerritzen, E.V., Kohl, G., McDermott, O., & Orrell, M. (2021, 29 November-1 December). Peer support through Zoom: experiences of people with Young Onset Dementia [Oral presentation]. 31st Alzheimer Europe Conference. Virtual, Utrecht, The Netherlands
4. Gerritzen, E.V., McDermott, O., & Orrell, M. (2021, March 10). Online peer support for people with Young Onset Dementia [Webinar presentation]. Centre for Dementia lunchtime seminars (online), Institute of Mental Health, University of Nottingham