Clarissa Giebel, Institute of Population Health Sciences, University of Liverpool
Care homes have featured heavily in the news since the pandemic, either for being virus hubs or for not allowing loved ones to visit their relatives. But what about those people living with dementia who are living in the community, and who are accessing vital social care? This can range from accessing peer support groups, day care centres, respite care, or paid home care, to name some. Accessing these services is important to enable a good quality of life for people living with dementia, and their unpaid carers, and to support them live longer independently in their own home.
Accessing these types of services wasn’t necessarily easy for everyone before the pandemic. Since March though, we have seen that access by fellow carers and people living with dementia at these services has become severely affected.
We had to be quick to capture these potential changes when lockdown 1 happened on the 23rd of March last year. We co-produced a longitudinal online and telephone survey with people affected by dementia, clinicians, and third sector service providers, and started recruitment in April. Also thanks to Join Dementia Research, a lot of people living with dementia, carers, and older adults took part.
Specifically, we asked participants about the types and amount of social support services used before and since the pandemic, and about their mental well-being. We asked people to complete the survey at three time points: At Weeks 1, 6, and 12. This translated into data collection between mid-April to mid-May, end of May to end of June, and mid-July to mid-August.
Having reported on the baseline findings earlier: (https://www.tandfonline.com/doi/full/10.1080/13607863.2020.1822292), and how the severe reduction in social support service usage was linked to reductions in mental-wellbeing and increased levels of anxiety, we now looked at the overall survey data.
We showed that accessing services was significantly reduced shortly after lockdown 1. This included paid home care, day care centres, transport, support groups, and more. Over the course of a few months, we showed that these stark reductions did not reach pre-pandemic levels again, although usage started to increase very gradually for some types of services (read our paper here: https://bmjopen.bmj.com/content/11/1/e045889). This is likely to be linked to services having adapted to providing remote virtual support. However, if this is the case, this leaves out a large number of people who won’t be able to access this type of support – either due to lack of access to the internet, or due to difficulties with using the internet.
What was striking was that paid home care was found to be the least affected by the pandemic. Although many unpaid carers faced difficult decisions – should they continue home care or not? Should they increase the risk of virus transmission with different carers coming in daily? (https://bmcgeriatr.biomedcentral.com/articles/10.1186/s12877-020-01719-0), this data showcases that, in the end, unpaid carers did decide mostly to continue with paid home care.
Interestingly, variations in support service usage were not linked to mental well-being over time. It may be that participants had adjusted to the lack of support over time, which is why we only found a link when looking at pre-pandemic levels and lockdown 1 levels. What is important to stress, though, is that not receiving adequate support can impact on people’s lives, in many ways.
So, what’s next? I think it is incredibly important that we stress much more how crucial community-based social care is for older people and people with dementia. And let’s not forget those many family and friends carers. Social care does not only circle around care homes. Many more people need support and live in their own home, possibly isolated now even more due to lockdowns and various public health measures. So let this be a wake up call to desperately tackle the state of social care and learn from this pandemic for, post-pandemic, better times ahead.