Research with family carers of people living with dementia: recruiting during the pandemic

The UK Government stated that by 2020 it wanted to see an increase in the number of people with dementia living and receiving care at home. The majority of home-care in the UK is currently provided by informal carers – the Alzheimer’s Society estimate that over 670,000 unpaid carers provide support for a person living with dementia within the UK. In this blog, we use the term ‘carers’ to refer to unpaid informal caregivers who support a family member or friend living with dementia, whether they live together or apart, and whether the person with dementia is living in a private household (their own or a family member's) or in a place offering residential care. COVID-19 is linked to increased deaths in people living with dementia and is exacerbating existing inequalities. Yet very little is known about the experiences of these carers, especially during the pandemic.

In seeking to explore these experiences, research teams from University of Manchester and Staffordshire University found that we faced similar barriers in the recruitment of participants to our studies during the COVID-19 pandemic. This encouraged us to consider collectively what the implications of these barriers to recruitment are for knowledge generation, and ultimately, for policy and practice. We wanted to share experiences for the benefit of similar teams and projects, and we would be really interested to hear from anyone with experience or insight into these issues. In discussing our cumulative experiences, we hope we can shine a useful light on this topic and break down some of these barriers.

In this blog, we outline the research aims and methodologies of our three studies, reflect on our experiences of the research process for our individual studies, before drawing together the implications of these experiences. We close with some recommendations for future studies with this population and collaborative practice.