A few weeks after Covid-19 kicked in March 2020 I met Adelina Comas Herrera. Adelina is a researcher based at the London School of Economics. She led the Long-Term Care Covid-19 network, the most important collaborative effort in the world to address the challenges that the pandemic brought upon people living in long-term care (most of whom have dementia). Her work in the early days of the pandemic put the tragedy happening in care home systems across the world on the spot. And made the headlines in news worldwide. She and her network of collaborators (researchers, clinicians, journalists, civil servants, dementia organisations …) dug out data that not even governments had yet managed to put together back at the time. This work was being published almost in real time through the LTCovid-19 reports website (I remember very well our frantic exchanges of messages on Saturday evenings and Sunday mornings during the Spring of 2020). She also engaged relentless with media and policy makers, twitted constantly, run monthly open access webinars, curated the LTCovid-19 website and a long list of other actions to keep the rights of people relaying on long-term care in the eye of the public opinion. WHO itself drew on the LTCovid-19 website to keep track of the effect of the pandemic in care homes during the first year. Today I am convinced that Adelina’s persistence and advocacy during these 3 years is having a long-lasting effect in the future of long-term care and all the people depending on it.
From the LTCovid-19 collaboration I learned how to use my knowledge to advocate for the rights of people with dementia. A subgroup of us in the LTCovid-19 network worked on the specific impact of Covid-19 on this population. Together, we gathered important data and produced reports that captured the attention of international organisations such as WHO, UN, the European Centre for Disease Prevention and Control and the US and Spanish Departments of Health and Social care respectively, that cited our research in their policy documents (Suárez-González, et al., 2020a, Suárez-González, 2020, Suárez-González, et al., 2020b). I also learned how important it was to engage – and knit alliances – with journalists. I gave as many interviews as I could to help raise awareness of the impact of Covid-19 and the isolation measures on people with dementia. Some of them were featured in national and international media and read by many people. With the help of Gill Livingston and Adelina I wrote letters to the British Medical Journal voicing our concern about the situation of people with dementia during Covid-19 and with Jules Storr about the ban on visits in care homes. I supported John´s Campaign serving as an expert witness in their court proceeding challenging the Department of Health and Social Care guidance for visiting in care homes. The more advocacy I did, the more I understood new ways of doing it and the important impact it had.
The precise reason why I emphasise public and patient involvement (PPI) so much is because I believe it is also a way to educate the public and to fight discrimination and prejudices against people affected by dementia. Nowadays I use every single opportunity I have to wave my PPI flag on this purpose. And join forces with likeminded people. This year I joined the executive committee of the Partnering with Research Participants ISTAART PIA, which is a professional interest group dedicated to foster best practices on how to bring in the voices of people with lived experience of dementia to influence research. This past week we pitched our PPI approach to other 29 ISTAART PIAs to build collaborations across all disciplines, and PPI capacity in general. With the support of my PIA group and UCL Global Engagement funds I also started a partnership with Princeton University to write a book to help build positive narratives about dementia, reduce prejudices and discrimination. Last November I was invited to talk at the Healthy Ageing 2022 conference about how to use inclusive co-design to unlock innovation. I used this space to tell the audience about a digital tool I co-produced with people with dementia. But in reality, what I did was advocacy undercover, by sharing a story about the unbeatable force and value of the human spirit and how this does not end when you have dementia: “we humans are much more than the things that happen to us, much more than the conditions we live with” (watch my talk).
As you can see, there are many ways in which you can use your research and your knowledge to advocate. I will be very happy to hear if this entry has someone stirred your interest in doing a bit more of public engagement. With your advocacy, you can contribute to fight discrimination and join a global movement to protect the human rights of people with dementia.
Dr Aida Suarez-Gonzalez is a Clinical Neuropsychologist and Senior Researcher at the Dementia Research Centre, UCL Institute of Neurology at Queen Square. With many years clinical experience working in Spain, Aida now investigating non-pharmacological interventions, services and assistive technologies to support people living well with dementia – this work has included creation of the ReadClear App to support reading for people with posterior cortical atrophy (PCA).
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