The Emotional Rollercoaster of Covid-19

by Martha Pusey

Having worked in the health and social care sector for 27 years I have seen my fair share of trauma, deaths, and family crisis. There was very little of those experiences that would prepare me for the Covid-19 roller coaster and the emotional toil that it would take on carers who had loved ones living with dementia and my highly passionate team of Wayfinders. Together a seven strong team of Wayfinders, support workers and managers, manned the phone over a 12-hour day, seven days a week.  We are an unseen army not recognised as keyworkers, navigating a new path through lockdown syndrome*, suicide Monday*, Section Saturday* and into a new world of face masks and visors. 

*Terms created by the team during lockdown as markers for what was happening at the time. 

 Experienced Emotions 

Every day the team would talk to carers who had loved ones living with dementia, each of who would say that it was a harder than normal to look after their loved one By the third week into lockdown a clear pattern of carer distress was emerging, it was at this time we coined the term lockdown syndrome. Feelings of isolation and fear began to dominate phone calls with carers and some were developing creative strategies to encourage loved ones to remain inside whilst fearful of the coming weeks and how they would cope. 

As each person experiences dementia differently, so the emotions of lockdown impacted people differently.  While some were comfortable at home, many experienced a decline in their health, had falls resulting in hospitalisation or coped using self-stimulating behaviours such as banging their head on the walls or scratching themselves when told they were not able to leave their home. 

It was through reflecting with the Wayfinder team in August that I began to recognise the similarities in the emotional roller coaster.  My team too felt panic and fear, however this was from a professional standpointas one staff member recalls “It was a novelty for me to start with, to work at home, and after that wore off I went into a state of panic about the carers and how they would cope as there was no end point.”  Similarly, carers reported “Due to the Cummings incident it has created such a problem and people are out in masses and it scares me to go out.”.  One of the Wayfinder team felt that same sense of fear and “state of panic about returning to work.  I was convinced that being around other people I would get Covid-19 and I would die”. 

Jacquie – Wayfinder

Impact on mental health 

Suicide Monday was an emotional day for the team as 4 separate callers shared worries and fears of loved ones living with dementia who wanted to end their lives.  One carer had sat awake for 48 hours with her husband who had threatened to overdose. The impact for this one carer was massive and after 48 hours she finally realised that she needed to reach out for help.   

Working alongside NHS professionals there seemed to be an emerging pattern that the effects of lockdown on people with dementia were clearly more significant.  Increasing numbers of carers were reporting their loved ones being agitated, frustrated and aggressive.  The, soon to be closed NHS Harold Kidd unit, was so overwhelmed that patients being sectioned were having to remain in their own homes with 24/7 care as there was a growing lack of beds.  Sadly, for one of the carers accessing Wayfinding, this meant she was terrified in her own home, living with a man assessed as needing hospitalisation and absolutely petrified of him despite her love for him and their history of over 50 years. 

This has driven me to fight harder for carers and people with dementia, to get them the help and support they deserve.   

I am not sure that we will ever know the true emotional impact of Covid-19 for the people living with dementia and their carers that we support.  For me as a professional carer I felt disempowered to do my job and any support offered was not physically real and just not good enough. 

Louisa – Wayfinder

Successful Support  

While a very small and local charity, Dementia Support made a massive impact within the local and wider communities.  Throughout shielding the Wayfinder team made over 85hours of phone calls, reaching 196 individual carers enabling access to support during the lockdown for the most vulnerable.  This included 88 brand new carers to Dementia Support from around the country who began to phone along with several international callers, ranging from Poland, New Zealand and India. 

As a team we adapted and were able to be creative in our responses bringing about a different way of thinking to our approach.  For one carer this meant supporting her to move her husband from the care home she had placed him in at the start of lockdown.  She was given 48 hours’ notice to find a new care home as the home did not feel able to meet his needs.  For someone living with dementia a sudden change of environment can be extremely disorienting and can make the dementia symptoms worse, causing more confusion and distress for an individual.  Add in Covid-19 and a care home move seemed next to impossible with the need for testing before a move and the increased volume of care home beds being required.  However, our dedicated team did it! 

Our greatest success and most emotional ride through lockdown was however supporting a gentleman diagnosed with dementia who lived alone.  The team were overjoyed as he overcame the drastic change to his routine and panicked when he didn’t call.  Safeguardings were raised when he didn’t have the appropriate support and risked over medicating himself and we waited in fear for him to be found by the police when he got into a strangers car.  His sheer resilience and determination to battle whatever Covid-19, government guidance and perceived lack of capacity imposed on him, empowered the team to fight on and to face the daily challenges. Drawing strength from each other and from those they talked to, continuing to deliver an excellent support network and feel proud for carers to consider “Dementia Support my Anchor” during Covid-19. 

Aimee supporting Bob and Anne in a Wayfinder Appointment (pre covid)

The Covid Conclusions 

I am fortunate to lead the most dedicated team of heroes that, in the face of adversity have adapted the support that they offer to people with dementia and their carers though a time of great uncertainty and extreme emotions.  Many of the emotions that have been experienced through Covid-19 have been shared by people living with dementia and their carers.  Many experienced fear, panic and anxiety about their own health and mortalitybut, this fantastic team were united in the desire to ensure the best for the person living with dementia and continued to provide an excellent service for all. 

Our Wayfinder service is free, however it costs £345 a day to keep this service running.  We would appreciate your support in helping us to maintain this valued service for our carers and their loved ones living with dementia.  

Please look out for our next blog written by Aimee out on the 4th November which is National Stress awareness day. Aimee has also made an accompanying video with Mindfullness and Breathing techniques 

For more information about befriending calls, chatter table and virtual activities – https://www.dementia-support.org.uk/about-dementia-support/befriending/

or email info@dementia-support.org.uk