Here is Edward Bear, coming downstairs now, bump, bump, bump, on the back of his head, behind Christopher Robin. It is, as far as he knows, the only way of coming downstairs, but sometimes he feels there really is another way, if only he could stop bumping for a moment and think of it.
From Winnie-the-Pooh by A A Milne
IMAGINE waking up and not knowing where or even who you are. Or how to organise your limbs to get out of bed, let alone get dressed. That the functions of seeing and hearing are disrupted making your world blurred and muffled.
Then strangers walk into your darkened space and reach for you, to touch you, to lift you from your bed.
You are threatened and frightened, so reasonably you shout at these strangers, you push them away, even scratch, bite or hit out at them.
Now imagine these strangers coming into your room are disguised in masks. Can you imagine how terrifying that would feel when you’re already anxious? The reality is that it’s a daily occurrence for many people with dementia; some, including me, would say torturous.
We were doing so well to improve life for people with dementia until March 2020 when lockdown as a response to Covid-19 hit. It affected all of us but especially so those living in care homes, the majority of whom have dementia. Much of what we know about how to enhance the quality of life for people with dementia was thrown to the wind in an attempt to protect them from Covid-19 at the expense of many of the things that give meaning and quality of life for those who are heading towards the end of life. Care home residents were among the most vulnerable to severe illness and death, making it necessary to do something, but isolating them from their loved ones is likely to be one of the many contributing factors which led to excess deaths in care homes.
For a person with dementia to be isolated from loved ones and familiar routines is intolerable, but subjecting them to a world of covered faces isolates them further from humanity and removes their main source of communication. It’s horrifying to think that some care home residents may not have seen an unmasked face for nearly two years. Much is written on how masked faces impede communication for all of us, so common sense if nothing else tells us that it’s imperative for people with dementia to see faces. Hiding the face of a loved one or care giver behind a mask means the person with dementia is likely to be thrown further into a frightening and lonely world where everybody looks sinister and the necessity and comfort of a familiar smiling face is removed. Suggesting that masks don’t matter because you can ‘smile with your eyes’ is a bizarre notion because people with dementia are already struggling to recognise familiar faces and interpret facial expressions so hardly need an additional hurdle. A naturally loud voice with a smile hidden behind a mask is more than likely to sound threatening than reassuring. Clear masks as suggested by some, which at least acknowledges the problem, still mask faces when they either steam up or distort light and they’re even more likely to muffle sounds.
The problem is that we’ve been encouraged to believe that maskless faces are a threat to life, without weighing up risks against benefits. As a result, government exemptions are rarely used or promoted. The exemption criteria in Scotland (English guidelines are more reasonable) have been made impossible to apply in care settings, so dismissing people with dementia entirely. The Scottish guidance states that you can temporarily remove your face covering if you are communicating with someone who relies on lip reading and facial expressions to communicate but to keep a safe distance of one metre if possible, especially if indoors. How on earth can it be possible to communicate from a distance with somebody who may be distressed and also has eyesight and hearing problems?
A smile, a gesture or even a touch can make the world of difference to somebody with dementia, but all well-researched and meaningful methods of communication have been made impossible. It’s universally recognised that risk-averse approaches focusing on a single issue to the exclusion of all other factors are likely to cause more problems than the presenting risk, the key being to manage risk carefully rather than avoid it.
Dementia is one of the most feared conditions of our time and understandably so. There are nearly a million people in the UK living with a diagnosis of dementia. Most people live long and well with it, but there’s a deafening silence around the many problems of mask wearing for those with dementia and others with cognitive impairments. We should all try to stand in the shoes of somebody with dementia because it will touch all of us in some shape or form either directly or indirectly.
Going back to Edward Bear, people with dementia need the unnecessary bumping to stop, so I challenge us all, but especially my fellow professionals, to take time and think about how we can do things differently.