Author: Laura Bavelaar, MSc Leiden University Medical Center
Date of Publication: October 2022
My “life as junior researcher” started in April 2019, with an EU JPND funded project entitled mySupport study. Along with 5 other country partners, I was involved from the beginning as a junior researcher in the Netherlands. Soon after, on 8th of May 2019, the inaugural International Conference on Palliative Dementia Care (ICPDC) took place in Belfast. The opportunity to meet all researchers from the mySupport study was motivating, many had travelled from across various European countries and Canada. Several members from the mySupport study group presented their work to the large audience that had gathered in the Europa Hotel. Hearing experts from the mySupport study team such as Jenny van der Steen, Karen Harrison Dening, Sharon Kaasalainen and others speak was really inspiring. I felt privileged to work in such great company.
Flash forward to April 2020: the COVID-19 pandemic had spread across the globe and countries were in ‘lock-down’. While the past months had been busy with preparing the study implementation in the nursing homes, it became clear that plans needed change to fit the current circumstances. Team meetings continued online and the mySupport study was revised and pivoted to being contactless as far as possible. These months in lock-down did not mean that no work got done. On the contrary: preparation of the study was ongoing and mySupport study junior members meet virtually at regular intervals through the Early Career Researchers Committee, to collaborate on various work packages and to produce literature reviews.
As part of the Dutch work package, I was conducting work on the Comfort Care Booklet, an informational booklet for family caregivers about dementia and palliative care (read more ). The mySupport study involved an intervention to be implemented across all 6 countries. Of course, this intervention was required to fit the context and address local needs. Therefore, Jenny van der Steen and I started comparing the Comfort Care Booklets of each country. The variations in the booklets informed us about cross-country differences in legislation, care practice and culture. Identifying the cross-country differences is important for future work and creates a better understanding for transnational collaborations. We explored textual differences, the overall layout and images used, and we interviewed the developers to hear more about the revision process. Since we had gathered such a vast amount of information that we considered informative not just to the mySupport study, but beyond, we wrote a paper about this work. You can find the paper here. Within the booklet we provide some questions which can support family caregivers of people with dementia to ask questions that they might otherwise be afraid to ask or might not think about them in the moment with the health professional, you can read more about these questions here
During this analysis process, Alzheimer Europe circulated a call for abstracts for their conference from 29th November – 1 December 2021. This was a great opportunity to present our work, and I had to think back to when I had attended my very first conference in Belfast! However, the COVID-19 pandemic was not yet completely over, and conferences were not hosted in-person yet to minimize infection risks. Instead, Alzheimer Europe hosted their conference online. In a beautiful roof-top venue with views all over Utrecht, the Netherlands, the conference was professionally hosted and live streamed for all online attendees. The conference was themed “Resilience in dementia: Moving beyond the COVID-19 pandemic” and our presentation was selected as a short oral presentation in the session on “Care and support”. This was a great fit, since the Comfort Care Booklet aimed to support family caregivers of people with dementia. While recording a video presentation and answering questions in a chatroom did not feel like the “real deal” such as I had experienced in Belfast, it was great to share our work and introduce all attendees, among them also people with dementia and their family caregivers, to the Comfort Care Booklet that may be supportive to them. You can catch up on the 5 minute recording here
Currently, the COVID-19 restrictions are being relaxed and we are able to meet in-person again -such as during the Nordic Congress of Gerontology in Denmark. Discussing in-person, sharing thoughts and making connections really fuels our research in palliative dementia care. I have learned a lot throughout the mySupport study, and I feel thankful to all my colleagues and all participants in this study.
References:
Bavelaar, L., McCann, A., Cornally, N., Hartigan, I., Kaasalainen, S., Vankova, H., Di Giulio, P., Volicer, L., Arcand, M., van der Steen, JT., Brazil, K., mySupport Study Group., Guidance for family about comfort care in dementia: a comparison of an educational booklet adopted in six jurisdictions over a 15-year timespan. BMC Palliat Care 21, 76 (2022). https://doi.org/10.1186/s12904-022-00962-z
Bavelaar, M. Nicula, S. Morris et al., (2021) Developing country-specific questions about end-of-life care for nursing home residents with advanced dementia using the nominal group technique with family caregivers, Patient Education and Counselling, Online, DOI https://doi.org/10.1016/j.pec.2021.07.031
Meet the author: Laura Bavelaar, MSc Leiden University Medical Center, PhD student on mySupport study
Laura Bavelaar is a researcher in Public Health and Primary Care at the Leiden University Medical Center (LUMC). Laura has a background in neuroscience, with a special interest in consciousness and phenomenal awareness. Currently, Laura is completing a structured PhD around the mySupport study, so its focus is a palliative care approach in dementia that is proactive and family inclusive, or: advance care planning with family caregivers of people with dementia.
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