Facing up to the dementia home care dilemma of COVID-19

Dr Clarissa Giebel is a Research Fellow in the University of Liverpool’s Department of Primary Care & Mental Health.

In the UK, over 850,000 people are living with dementia. This is expected to hit over 1 million by 2025, with numbers consistently rising. But it’s not only the person with the condition that is affected. Family members and friends provide up to £13.9 billion a year in unpaid care and support, to enable the person living with dementia to stay at home independently for as long as possible.

It can be difficult though to manage all the care needs, especially if the dementia is more advanced. Then it is not only about sorting out medication, or making a hot meal or doing the laundry. On top of that, people with dementia need to be supported in engaging in more basic and personal activities, such as getting dressed, getting washed, or using the toilet.

At some point, family members and friends cannot manage all care needs and may decide to get help to support them with the care they provide. Providing care at home for as long as possible is important to delay a care home entry. People wish to stay in their own familiar environments, and not get absorbed by the institutional care system. This is particularly the case now, as care homes have emerged as virus hubs during the COVID-19 pandemic.

But do people with dementia still get access to paid carers during the pandemic? With so many public health restrictions having been suddenly imposed in and since March, including shielding for older and vulnerable people, wearing face masks or full personal protective equipment, social distancing, and a nationwide lockdown, it would be surprising if the social care sector (outside care homes) has not seen a hit.

This is why, as part of our larger COVID-19 dementia and ageing social care study, we spoke to unpaid carers of people living with dementia and asked them about their experiences of receiving social support services throughout the pandemic. Specifically, carers had mixed experiences in accessing paid home carers.

A number of unpaid carers were too scared to let paid carers into the home, for fear of virus transmission. They were not sure whether the staff adhered to public health measures or went to see other households in their spare time, or maybe caught the virus while travelling to work on public transport. As a result, they took on extra caring duties and started to feel more burdened.

Other unpaid carers continued to receive paid home care, as they could not cope otherwise. Some of them were concerned about the increased risks of virus transmission and would prefer staff not to enter the home, but accepted the potential risks.

Where staff did continue to provide care, unpaid carers shared their many different experiences of how well staff adapted to public health measures in the home. Some staff wore full personal protective equipment, others only face masks, whilst some did not keep a social distance even if it was possible for the care task being provided (e.g. making a meal).

We therefore recommend better support in place to help family and friends who care for someone with dementia make more educated decisions about whether or not to continue paid home care. Considering that social care staff are one of the worst affected employment groups by COVID-19, some of the next steps will be to explore the changes in care provision and adaptation from staff providers’ points of view.

Research reference:

Giebel, C., Hanna, K., Cannon, J. et al. Decision-making for receiving paid home care for dementia in the time of COVID-19: a qualitative study. BMC Geriatr 20, 333 (2020). https://doi.org/10.1186/s12877-020-01719-0