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

Abstract

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.

SciScore for 10.1101/2020.12.18.20248455: (What is this?)

Please note, not all rigor criteria are appropriate for all manuscripts.

Table 1: Rigor

Institutional Review Board Statement	IRB: This study was conducted as part of the RDS Impact study (Brotherhood et al., 2020) and granted permission by the UCL Research Ethics Committee (8545/004: RDS Impact Study). 2.1.
Randomization	not detected.
Blinding	not detected.
Power Analysis	not detected.
Sex as a biological variable	not detected.

Table 2: Resources

No key resources detected.

Results from OddPub: We did not detect open data. We also did not detect open code. Researchers are encouraged to share open data when possible (see Nature blog).

Results from LimitationRecognizer: We detected the following sentences addressing limitations in the study:

Limitations: This study documents the experience of members of RDS, a highly specialised organisation providing support to people affected by low prevalence and young-onset dementias. Some methodological limitations should be acknowledged. First, no demographics were collected in this survey, which impedes comparisons across groups (since results could not be interpreted nor confounding variables considered). Second, limitations also apply to the representativeness of this sample and drawing generalisable conclusions. For instance, it may be that people who felt more stressed were also more motivated to share their experience and therefore, may be overrepresented. The opposite is also possible that people who felt more stressed were less available and therefore are underrepresented. It may also be that people who are more engaged with the activities of RDS also feel closer to the staff and researchers, and this familiarity may have prompted more particiaption among those members. Third, only people able to use technology could engage in the online survey. This is an important limitation for many, with deeper repercussions in the representativeness of data collected online but also equity and equality in accessing research and other services. Fourth, people with dementia were also encouraged to participate in the survey. However, no system was in place to support their participation, which biases both the kind of people with dementia who could respond to the survey and the res...

Results from TrialIdentifier: No clinical trial numbers were referenced.

Results from Barzooka: We did not find any issues relating to the usage of bar graphs.

Results from JetFighter: We did not find any issues relating to colormaps.

Results from rtransparent:

Thank you for including a conflict of interest statement. Authors are encouraged to include this statement when submitting to a journal.
Thank you for including a funding statement. Authors are encouraged to include this statement when submitting to a journal.
No protocol registration statement was detected.

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