The ‘3 Nations Dementia Working Group’ is a working group of people living with dementia across England, Northern Ireland and Wales. Members are based all across the three nations, creating a network of voices on dementia who can lead on regional projects.
As Chair of the ‘3 Nations Dementia Working Group’, I have helped to deliver a series of webinars around the impact of Covid-19 on people affected by dementia. The webinars have been well attended and well supported, generating a lot of subsequent discussion. Our panel members have been a mix of professionals, carers and people with lived experience, to give us a broad range of perspectives.
The webinar structure and content are designed and delivered by people with lived experience, so the evidence and contributions are what matters to the ‘3 Nations Dementia Working Group’ and the wider membership. There is a mechanism in place for the wider membership to suggest themes and subjects for the webinar’s, and participants are encouraged to post comments in the text boxes and reach out to make connections. These are particularly busy and have been a real success.
We also facilitate Saturday/Sunday socials for members, and these have proved extremely popular. The format is more relaxed than the webinars, with no agenda - just an hour of chat and friendship, allowing people to take a break from lockdown and have the opportunity to connect with other people. All these activities are hosted via the ZOOM virtual application.
As well as being united against dementia, we now find ourselves united against Covid-19 as well. So many members are steadfast in following lockdown guidelines and being responsible in staying safe. However, many people have reported concerns over a fear of a loss of skills due to isolation.
Fears of people living with dementia included:
- a loss of acquired skills (social and adaptive)
- becoming estranged from friendships and contacts due to lack of regular engagement
- a loss of independence
- having to re-learn many activities (such as using public transport and travelling independently to events and shopping).
The stress of a caring role is well understood, but what’s also understood is that caring for someone with dementia brings additional pressures during lockdown.
Additional pressures on those caring for people living with dementia included:
- the lack of availability of medications
- the lack of availability of food delivery
- the person in their care having difficulty understanding why their routine had changed because of lockdown restrictions
- the withdrawal of face-to-face services (although a requirement, this is hard to understand for the people affected, bringing an inevitable feeling of abandonment)
- fear that these services would not be in place post lockdown.
A lack of space for carers to recuperate from the stresses of caring imposed by lockdown requirements was a strong topic. Carers felt there had been no impact assessment done on the effect of losing the support services with them, and no strategies put in place to deal with their concerns.
Participants were concerned about carer burnout and how much recovery time would be needed to restore the balance and dynamic between a carer and their loved one, client or service user. There was an acknowledgement that some ‘repair work’ must be done. We do not know at this stage what the final casualties will be, but it is accepted that there will be more than just a medical impact. Service providers need to understand that many of the concerns raised were related to people with dementia being anxious over resuming activities post lock-down, and the support that would need be in place as it was pre Covid-19.
Participants suggested that after the easing of restrictions, we will need careful thought on how re-engagement happens. It will need be at a pace that is agreed, not one driven by expediency, when social distance measures change. Many participants felt they could end up becoming more reliant on their carers as they adjust back into previous routines. In order to achieve this adaptation, it was felt that we need to rebuild confidence in one another and available services. It was also felt that the third sector could be vital in this, with support from organisations such as the Alzheimer’s Society, Dementia Friends, Deep and others, being pivotal to the success of readjusting.
Health and social care workers and third sector organisations continue to play an especially important role in supporting and protecting the rights of people living with dementia during the crisis in the UK.
Concerning practices have been reported by different media sources and in different geographical locations across the UK.
These concerning practices include:
- refusing admission to people living with dementia to hospital
- a lack of antigen testing of those either living or working at care homes, or those moving in
- a lack of PPE in care homes
- mass signings of DNAR (do not attempt resuscitation) forms.
Professionals and the voluntary sector have spoken out about the effects of this and are working hard to mitigate them. Emerging evidence is raising questions about the extremely high vulnerability of those living with dementia to serious illness or death from Covid-19, and that may remain under-recognised. The effects of prolonged lockdown and/or post Covid-19 hospital discharge, need further investigation. Dementia care in the UK has been negatively impacted at many levels by the Covid-19 pandemic, and further research will need to be conducted long term to fully understand the implications of this.
The webinars and the Saturday/ Sunday socials will likely continue post-lockdown, as they have proven to be an inexpensive and easy way to connect with the wider membership and encourage engagement. This is something we shall continue to actively encourage.
This is just a very brief overview of the webinar’s responses, however we are happy to engage via @3NDWG or you can visit our website at: www.3ndementiawg.org.