The impact of the first UK Covid-19 lockdown on carers and people living with low prevalence dementia: results from the Rare Dementia Support survey

Introduction

The public health measures imposed to contain Covid-19 during the first UK lockdown resulted in significant changes in the provision of community support and care for people with dementia. People with low prevalence and young-onset dementias often experience non-memory, behavioural or neuropsychiatric symptoms that require specialised support.

Objective

We explored the impact of the first Covid-19 lockdown on people living with low prevalence and young-onset dementia and their carers in the UK.

Method

An online survey, including eleven questions about the impact of the lockdown on both the person with dementia and their family caregivers was conducted. Participants were people living with dementia and caregivers who are members of the UK national-reach organisation Rare Dementia Support.

Results

184 carers and 24 people with dementia completed the survey. People with dementia experienced worsening of cognitive symptoms (70%), ability to do things (62%) and well-being (57%) according to their carers. Carers also reported a reduction in the support received for caring (55%). 93% of carers of people living in care homes reported a reduction in their ability to provide care. 26% of carers reported changes in the medication of the person with dementia during the lockdown. 74% of people with dementia reported decreased ability to connect with people socially.

Conclusions

People with dementia experienced a worsening of dementia symptoms, removal of support and increased difficulty to connect with other people socially during the 1^st wave of Covid-19. Carers encountered barriers to both receiving and providing support and a decline in their own mental health and well-being.

Key points

• 70 % of carers reported cognitive symptoms getting worse during the lockdown (e.g., the person with dementia being more disoriented and finding it more difficult to communicate).

• 26 % of carers reported a change (initiation or increase) in medication in the person with dementia during the lockdown.

• 79 % carers reported their own physical or mental health getting worse due to the lockdown. This increased to 93% when considering responses only from family carers of people living in care homes.

• 93 % of family carers of people living in care homes found it harder to continue providing care and support for their relative due to Covid-19.