The pandemic has had huge effects on how people living with dementia and their unpaid carers are receiving support. That is regardless of whether people live at home in the community, or in a care home.
At the very beginning of the pandemic, I put together a large group of academics, Charities, health care professionals, unpaid carers, and a person living with dementia to explore the impacts of COVID-19 on people with dementia and carers in the community. Findings from our interview and longitudinal survey highlighted the devastating reductions in social care and social support since lockdown. What’s more, we reported faster deteriorations of dementia progression as a result and impacts on mental well-being. And only a few months after lockdown, this faster progression already led some people with dementia to enter a care home much earlier (https://www.tandfonline.com/doi/full/10.1080/13607863.2021.1914545).
That’s why we subsequently also wanted to explore the impacts on people with dementia residing in care homes. We probably all remember how much care homes features in the media, and the lack of visitation allowed for family members.
In the autumn of 2020, we spoke to 42 family carers of people with dementia living in a care home and 16 care home staff, all from across the UK. A few months later, after vaccination rollout and increased testing, we re-interviewed some carers and staff.
What we found was sadly providing rich evidence to some snapshots covered in the media. Safe care home visitation was not enabled for carers, unless their relative appeared to deteriorate mentally from that lack of social contact, or if they were at the end of life (https://onlinelibrary.wiley.com/doi/full/10.1111/hsc.13651). Overall, care homes lacked clear guidance and were struggling to provide that fine balance between providing good quality care and protecting their reputation, by being overcautious of allowing family inside the home for fear of spreading COVID.
When comparing our findings with the Netherlands, a country known for its high-quality and advanced methods of care, we found that integrating clear guidance allowed Dutch family carers to see their loved ones in care homes from May 2020 onwards (https://www.cambridge.org/core/journals/international-psychogeriatrics/article/because-if-i-dont-hold-his-hand-then-i-might-as-well-not-be-there-experiences-of-dutch-and-uk-care-home-visiting-during-the-covid19-pandemic/546E8AE0E1589F2873AC1E511D583D56). This had hugely positive impacts on their well-being, whilst it was still emotionally difficult dealing with face-to-face restrictions of being unable to hold their relative’s hand for example.
Interestingly, despite vaccination rollout and increased testing between baseline and follow-up interviews in the UK, very little had changed in terms of visitation rights. In fact, family carers had grown angrier by seeing staff in close proximity to their loved one, yet still not allowed themselves to enter the care home. This was despite all family carers having been vaccinated (https://doi.org/10.1093/ageing/afab229).
As we are moving out of the pandemic, what these findings highlight is the need for clear guidance surrounding care provision for future pandemics. This is unlikely to be the last, so let’s avoid the severe stresses and faster deteriorations we have sadly witnessed during COVID-19, and produce clear guidance for future scenarios.
Dr Clarissa Giebel is Senior Research Fellow in the Department for Primary Care & Mental Health and at the NIHR ARC NWC. She is leading national and international research into inequities in social care for dementia and running the public-facing Liverpool Dementia & Ageing Research Forum, which brings together professional and lived experts in the field and aims to raise awareness of dementia and ageing.