The value and ethics of dementia research in the wake of COVID-19

Researchers are keen for findings on the effects of the pandemic, but sensitivity must be considered

At a time when a sense of urgency is pressing all academic fields to investigate the worrying progress of coronavirus, prioritising COVID-19 research funding applications and quicker ethics processes have been vital in building a convincing knowledge base.

But if we are to avoid accusations that academic success is often measured not by the quality of research questions or the rigour of methods used, but by how much grant money is won, then we should consider whether the ‘publish or perish’ culture that pervades much of academia is likely to have undesirable ethical consequences when combined with this need for urgency. This is especially true in our field of dementia care research.

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Considering ethics in research around COVID-19 and dementia

The national emergency has awakened our human desire to help. But we must ensure the energies of the research community are applied in a way that is principled and moral.

In rushing to view the world through COVID-19 goggles, we must continue to wear our ethics hat as diligently as our face coverings.

The primary goal of researchers is to generate knowledge and understanding, pursuing curiosity while being rigorous in our methods. Without question, there needs to be a global response from the research community to the COVID-19 pandemic.

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In the dementia care discipline, it is important that high-quality, qualitative research is undertaken to understand how coronavirus has affected the lives of those living with dementia, their loved ones and the people who care for them.

This is likely to include work related to the devastating effects on care homes, the need for advance care plans, the efficacy of face masks or indeed the consequences of the lack of personal protective equipment for care staff.

Sensitivity around timings of studies

However, the watchwords for these COVID-19 research programmes must be timing and purpose. We, as researchers, need to be the guardians of these ethical considerations, bringing meticulous scrutiny to ‘bandwagon’ work packages.

As a research community, we must balance our desire to know and understand, with a self-aware discernment for appropriateness.

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First, is this the right time to be asking people with dementia, their loved ones and the people who care for them to get involved in research?

As people are facing some of the toughest times in a generation – loss, financial hardship, loneliness – is it fair to burden them with participating in a study? Even the act of declining a research invitation produces emotional labour for the respondent.

Is this truly such a critical time? Will the results elicited now be so different if we ask the same questions retrospectively in the future?

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Making sure the research remains relevant

And second, what is the point of this research and how does it pass the ‘so what’ test?

Projects churned out through an algorithm of tokenistic search words – coronavirus, dementia – risk further ‘othering’ the people we are trying to advocate for. What do people with dementia think about COVID-19? Probably the same as everyone else. Some questions need only common sense, not ethnography.

• RELATED: Personalised care for people with dementia

Instead, bearing witness to people’s experiences during this time and using these testaments to highlight inequalities or improvements, those feel like endeavours practical, as well as profound.

Now is the time to challenge ourselves as researchers, to examine how our work remains relevant, supportive and meaningful to the populations we seek to serve, to hold ourselves to the same Hippocratic standards as those on the front line: to do no harm.

Yes, we need to ask questions. But of ourselves, not of research participants struggling with the realities and legacy of the pandemic.

Reference

INVOLVE (2012) Briefing Notes for Researchers: Involving the Public in NHS, Public Health and Social Care Research

Kay de Vries is professor of older people’s health, De Montfort University

Karen Harrison Dening is head of research and publications, Dementia UK

Emily Cousins is a research fellow, De Montfort University