NIHR: Informal dementia carers had to make difficult decisions about paid care during COVID-19

NIHR | January 2021 | Informal dementia carers had to make difficult decisions about paid care during COVID-19

Often people in the community living with dementia rely on informal, unpaid carers such as family and friends. Researchers wanted to find out how the first nationwide COVID-19 lockdown affected unpaid carers, and how they made decisions about accessing paid care. They conducted telephone interviews with 15 unpaid carers during the first wave of the pandemic (April and May 2020 ). From this sample almost three quarters (73.3%) of the carers lived with the person they were caring for. A little over half (53.3%) of carers were caring for their spouse.

Now this, the first study to report on the impact of COVID-19 on paid home care for people living with dementia, highlights how unpaid carers had to increase their care hours, but also areas of concern and difficult decisions carers had to make.

The researchers drew three themes from the interviews:

  • Carers felt concerned by the risk of paid carers bringing coronavirus into the home. Lack of personal protective equipment (PPE) and feeling unprepared to provide additional care heightened these fears: “I didn’t know how to use all the equipment and I didn’t feel safe and also didn’t know how to protect myself from injury and well and being of risk to Mum”.
  • Carers had difficult choices to make. Many avoided hospitals and other health providers. They struggled to weigh up the options of cancelling or continuing paid care and some described real fears of re-obtaining paid care post-COVID if they cancelled during lockdown.: “..a family friend of ours who’s already been told by their social worker that because they’ve managed without the [paid] care then they’re not likely to get it back after the coronavirus”.
  • Implications for unpaid carers included increased workload and difficulty in accessing food deliveries: “At the moment I can’t get an online shopping slot. Trying to get through to the helpline to get us put on the vulnerable list has proved an impossibility, I’ve spent hours and hours and hours on the phone which gives you a layer of angst that on top of everything else you don’t need”.

Lead author Clarissa Giebel, Research Fellow, Department of Primary Care & Mental Health, University of Liverpool & NIHR ARC NWC

When we did these interviews in April, most family carers were so afraid of the virus that they cancelled paid care, even though they desperately needed it. As a result, they got overburdened. I’ve spoken to people as part of a new study who said they got so burnt out during COVID that they had to send their loved one to a care home. We need to remember those carers are people in their own right and they need psychological support and care support too.

Clarissa Giebel, Research Fellow, Department of Primary Care & Mental Health, University of Liverpool

Read the full NIHR Evidence update Informal dementia carers had to make difficult decisions about paid care during COVID-19

Primary paper available from BMC Geriatrics

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