COVID blog #9 – How do COVID-19 public health restrictions affect the lives of people with dementia and carers in the UK?

In the UK, we were faced with a nationwide lockdown for over 12 weeks, starting on the 23^rd of March. A few days before that, people aged 70+ and vulnerable adults were told to shield – so not to go out at all. Lockdown restrictions for everyone meant that no one was to leave the house except a maximum of once a day, only to exercise or to go and get food or medication, if required. All face-to-face contact came to a halt, except for the people you were living with.

What did that mean for social care and social support services in dementia?

People living with dementia and unpaid carers (family members and friends) can access services such as day care centres, support groups, social activities in the community, or paid care after receiving a diagnosis. That is, if they are aware of these services, can afford them, and logistically access them. These services are offered by different providers, including third sector organisations and local councils.

Shortly after the nationwide lockdown came into force, we spoke to 50 unpaid carers and people living with dementia over the phone about their experiences of accessing social support services during the pandemic and how it affected their lives. To make sure we ask the right questions, our research group formed together of clinicians, academics, third sector organisations, and people affected by dementia.

What we found was very negative, as most people were unable to access any social support services back in in April. Those who were still accessing care, were accessing paid home carers. However, they spoke about their own difficulties in terms of increased risk of virus transmission. Very few people received any form of remote support, and understandably many people with dementia were struggling with how to use digital technology, leaving many more people without access to care.

One of the main findings, even so early on in the lockdown, was that people living with dementia experienced faster deterioration. This was related to not accessing social support services anymore, and not going to their previously enjoyed support groups and day care centres any longer. Many carers were severely concerned about whether their relative with dementia would be able to go back to those activities and services once restrictions were eased. Carers were worried that people with dementia would have progressed with their condition too far, and that they would not be able to recognise their peers any longer. But they were also concerned about just how services were going to look like – socially distanced? Fewer people? Staff wearing PPE?

Our study clearly highlights the negative impact of suddenly withdrawing access to social support services in dementia, as a result of the public health measures. Considering that we are at the beginning of a second wave in the UK and globally, services need to be supported better to provide adequate remote and/or some forms of face-to-face support during this ongoing pandemic.

 

Dr Clarissa Giebel is a Research Fellow at the University of Liverpool and NIHR ARC North West Coast