Evidence
Alert

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

People living with dementia in the community typically rely on unpaid care from friends and family members, combined with some paid care. This helps them remain in their own homes. Researchers wanted to find out how the first nationwide COVID-19 lockdown affected unpaid carers, and how they made decisions about accessing paid care.

Paid carers may make short visits to carry out a specific task such as getting someone in or out of bed. Often, many different carers visit the home each day. Because of the risk of infection, many unpaid carers made the difficult decision to stop paid carers coming into the home during lockdown.

As a result, the unpaid carers had more work to do and they had to take on care jobs they were not trained for. In addition, people living with dementia were not prioritised for grocery deliveries during the pandemic which meant their carers had to deal with the practicalities of accessing food.

This research brings to the fore longstanding problems with care for people living with dementia. These issues include a lack of continuity of paid care, poor monitoring of care staff entering homes, and minimal support for unpaid carers.

This is the first study to report on the impact of COVID-19 on paid home care for people living with dementia.

What’s the issue?

More than 850,000 people in the UK are living with dementia and the numbers are increasing. Many who live in the community rely heavily on care and support from friends and family. It has been estimated that these unpaid carers provide £14 billion of care each year.

People with dementia and their unpaid carers often also rely on paid care. Help with cooking, medication, and personal care may allow people with dementia to remain in their own homes.

Researchers wanted to find out how the COVID-19 pandemic had affected the lives of family carers. In particular, they explored how lockdown and social distancing measures had influenced family carers’ attitudes towards paid home care.

What’s new?

The research team interviewed 15 unpaid carers by telephone between April and May 2020. All carers had been accessing or trying to access paid home care before the pandemic. All were adult family or friends of someone with dementia. Around three-quarters (73.3%) of the carers lived with the person they were caring for. Half (53.3%) were spouses.

Researchers asked the carers about their experiences of paid home care since COVID-19 and before the pandemic began. They also asked about the process of deciding whether to continue using paid home care.

Many unpaid carers decided to stop paid carers entering the home due to the risk of infection. This meant unpaid carers had to increase their care hours.

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”.

Why is this important?

This is the first study to report on the impact of COVID-19 on paid home care for people living with dementia. It found that unpaid carers need better guidelines and more support with decision-making about paid care. This is important both during the pandemic and beyond.

The study draws attention to longstanding issues with paid care. Often many different carers enter the home each week and there is little continuity of care. The COVID-19 pandemic led to staff shortages and changes in paid care systems, exacerbating the problem. Minimising the number of different care staff entering the home would reduce the risk of virus transmission.

Other clear requirements are that all carers entering the home of someone living with dementia have access to suitable PPE. And the researchers suggest that having dementia should classify someone as ‘vulnerable’ and give them priority access to food deliveries.

What’s next?

This research was part of a larger study about the impact of the COVID-19 pandemic on dementia care. The team is currently analysing data from follow-up interviews with carers.

Future research could explore the pandemic’s effects on paid care staff and care home workers. Anecdotally, we know the impact on those groups has been huge, but there is limited data on this.

You may be interested to read

The full paper: Giebel C, and others. Decision-making for receiving paid home care for dementia in the time of COVID-19: a qualitative study. BMC Geriatr. 2020;20:333

Paper published as part of same research project: Giebel C, and others. Impact of COVID-19 related social support service closures on people with dementia and unpaid carers: a qualitative study. Aging & Mental Health. 2020. doi: 10.1080/13607863.2020.1822292

Paper published as part of same research project: Giebel C, and others. A UK survey of COVID‐19 related social support closures and their effects on older people, people with dementia, and carers. Int J Geriatr Psychiatry. 2020. doi: 10.1002/gps.5434

The project partner charity, Together in Dementia Everyday (TIDE), which aims to empower carers of people living with dementia

Funding

This research was supported by the University of Liverpool COVID-19 Strategic Research Fund and by the NIHR Applied Research Collaboration North West Coast (ARC NWC).

Commentaries

Study author

Social care was not right before the pandemic and it’s not right now, so things need to change. Someone with advanced dementia could have ten or more different carers coming in a week. With the risk of transmitting the virus, we need regular testing of paid care staff. Monitoring procedures could be used more broadly to let patients and carers know who’s coming into the home and who’s providing what type of care. We need to integrate technology much more into all aspects of social care for dementia.

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 & NIHR ARC NWC

Carer

As a former carer of family members in their 80s and 90s, I am aware of the needs of that age group both with and without dementia. A regular home care service in supporting unpaid carers is vitally important. During the pandemic, the efforts of unpaid carers were undermined by the possibility of losing the care service completely.  This was made worse by the fact that elderly people with dementia were not classified as a vulnerable group and were not prioritised for access to food deliveries.

GPs and other health professionals need to be aware of the extra burden this pandemic is placing on unpaid carers. They need to prioritise practical measures, even if it is limited to a fortnightly phone call. Minor activities – such as putting up a notice in their surgery – would raise public awareness of the issue and would be helpful.

Name and contact details supplied

Researcher

During normal times, support for people affected by dementia can be patchy. Lockdown has exacerbated this, services have become more disjointed, and some people are receiving limited support. Some third sector organisations are reluctant to open and to carry out home visits. Volunteers are in short supply due to volunteers shielding themselves.

I am involved in starting up a new service which includes remote and face-to-face support. I welcome this paper and will take it to the Dementia Strategy Board, Dementia Programme Board and Dementia Action Alliance in my area. We will use it to inform how we support carers and collaborate with other organisations.

Shirley Evans, Senior Research Fellow, University of Worcester

 

Conflicts of Interest

None declared.