As Chair of the 3 Nations Dementia Working Group. I have played a role in helping deliver a series of webinars some around the impact of COVID 19 on people affected by Dementia. The webinars have been well attended and supported. They have generated a lot of discussion, the panel members have been a mix of professionals, carers, and people with lived experience.
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 for the wider membership to suggest themes and subjects for the webinar’s in place. Participants in the webinar’s are encouraged to post comments in the text boxes and reach out to make connections. These are particularly busy and a real success of the webinars.
We also enable Saturday/Sunday socials for members, and these have proved popular, the form is more relaxed than the webinars, no agenda just an hour of chat and friendship allowing people some break from lockdown and the opportunity to connect. All these activities are hosted via the ZOOM virtual application.
So, what have we learned?
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 staying safe. However, many people reported concerns over a fear of a loss of skills due to isolation. A loss of acquired skills, social and adaptive and becoming estranged from friendships and contacts due to lack of regular engagement. A loss of independence and having to re-learn many activities such as using public transport and traveling independently to events and shopping as an example.
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, these would include the availability of medications , food delivery the person understanding why their routine had changed because of lockdown restrictions . The withdrawing of face-face services although a requirement hard to understand for the people affected, bringing an inevitable feeling of abandonment also fear 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 carer and loved one, client or service user. There was an acknowledgment that some “repair work “must be done. We do not know what the final casualties are, there will be more than just medical fallout, service providers need to understand that many of the concerns we were made aware of, are related to people with dementia being anxious over resuming activities post lock-down and the support that would need be in place, as they were pre COVID19.
It was made obvious from comments from the participants that after the easing of restrictions we will need careful thought on how re-engagement happens. It will need be at a pace agreed, not one driven by expediency when social distances measures change. Many participants felt, they could be more reliant on their carers as they adjust back into routines. To do this it was felt we need to rebuild confidence in one another and available services. It was felt that the Third sector could be vital in this these organisations like the Alzheimer’s Society, Dementia Friends, Deep and others could be pivotal.
Health and care workers and third sector organisations continue playing an especially important role in supporting and protecting the rights of people living with dementia during the crisis in the UK.
Concerning practices of refusing admission to people living with dementia to hospital, lack of antigen testing of those either living or working on care homes, or those moving in, a lack of PPE in care homes and mass signing of DNAR forms have been reported by different media sources and in different geographical locations across the UK.
Professionals and the voluntary sector have spoken out about the effects and are working 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. Effects of prolonged lockdown or post-COVID hospital discharged need further investigation. Dementia care in the UK has been negatively impacted at many levels by the COVID-19.
This is just a very brief overview of the webinar’s responses, we are happy to engage via @3NDWG or you can visit our website www.3ndementiawg.org
My thanks to everyone who participated in the events the webinars and the Saturday/Sunday socials this allowed us to gather the information we have presented.
The webinars and the Saturday/ Sunday socials will continue probably post-lockdown as they have proven an inexpensive and an easy way to connect with the wider membership and encourage engagement.
Special mention must be given to Adele Doherty Head of Dementia Voice who has worked so hard to make this happen.
Nigel Chair Of 3 Nations Dementia Working Group June 2020