The Silent Suffering Of Dementia

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 AA Milne

Imagine… waking up in the morning and not knowing where, or even who you are? Or how to organise your limbs to get out of bed, let alone get washed and dressed. That known people are strangers to you. That the functions of seeing and hearing are disrupted making your world blurred and muffled.

In this disorientated state, now imagine these same strangers walking into your darkened space and reaching 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? They wear smiles and their voices are kind but you can’t see or hear them properly and it’s all happening so very quickly.

While most people live long and well with a diagnosis of dementia, some or all of the elements of the above are the reality for many, especially for those who need the constant support of a care home.

Is it possible that the awfulness of the above situation can be avoided? Thankfully yes, but not without significant effort. Appreciating the unique story of each individual while having the knowledge, skills and confidence to support people with dementia make it much easier to make sense of the reasons why a person with dementia is distressed. Good communication is the key skill to making life better for people with dementia. James McKillop, one of the founding members of the Scottish Dementia Working Group has been living well with dementia for many years and understands perfectly the power we all have to change lives for the better. In 2010 he spoke passionately to professionals:

What I would say to the professionals is that – you can pull me back, give me my life back and pull me into the light. And by the same token, ignorance, arrogance, couldn’t care less, you can shove me down into the darkness and just cast me away. I need your help.

We were doing so well to improve life for people with dementia until March 2020 when lockdown as a response to Covid-19 hit. Of course it impacted on all of us but especially so on those living in care homes, the majority of whom have dementia. So 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. Of course 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. Considering that the average length of stay in a care home before death is around eighteen months, it makes no sense to isolate people for what is likely to be their final days on this earth.

In the words of Frank Sinatra, don’t we all want to ‘live until we die’? My dad who had dementia did just that. He was a fanatical cyclist and bought himself an expensive, beautiful red racing bike for his 97th birthday. We all had kittens when he said speeding down hill made him feel like a boy and he didn’t care if he ended his days in a ditch. However hard it was, we didn’t try to stop him and fortunately he never ended up in a ditch – but would it have mattered if he had? Incidentally, he died peacefully in a lovely care home at the age of 102.

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. Facial expression and body language make up the greatest part of our communication so 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. 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.

Many people with dementia are already stressed with trying to make sense of a world that has become alien and frightening so constant anxiety often becomes their norm. 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. For example, a naturally loud voice with a smile hidden behind a mask is more than likely to sound threatening as opposed to reassuring.

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. In saying that, the exemption criteria in Scotland (English guidelines are more reasonable) has been made impossible to apply in care settings and dismisses people with dementia entirely. The guidance states there are some situations where 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? Indeed, the conversation is likely to be taking place while discussing or providing personal care making it necessary to get up close and personal to have even the most basic of conversations. As said previously, masks muffle and distort sounds making it impossible to hear and benefit from the reassurance of facial expressions.

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 focussing 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 carefully manage rather than avoid risk. Perhaps we need to ask ourselves: after two years, what risk are we actually managing?

Dementia is one of the most feared conditions of our time and understandably so. Almost one million people in the UK live with a diagnosis of dementia but there’s a deafening silence around the many problems of mask wearing for those with dementia and others with cognitive impairments. Shouldn’t we 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? Think again about the scenario at the beginning of this article but this time these strangers coming into your room are disguised in masks. Can you begin to imagine how terrifying that would feel when you’re already anxious? Well, the reality is that it’s a daily occurrence for many people with dementia; some including me would say torturous.

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.

I’ll leave you with the eloquent words of Campbell Duke speaking for his wife Anne who had early onset Alzheimer’s Disease and spent much of the last two years of her life in a care home separated from her loved ones before her death in November 2021. Campbell’s daughter Natasha Hamilton gathered almost 100,000 signatures and with Care Home Relatives Scotland, petitioned the Scottish Parliament for legislation to ensure care home residents have rights to see and spend time with people who are important to them. As they wait, the silent suffering continues, most likely for some as follows:

It seems the length of a country mile since I’ve felt the warmth of a sunny smile
As faceless Angels ply their tasks behind their vapid sterile masks,
Who knows what feelings lie within, a pious pout? Or rictus grin?
Then thus to overcompensate, the angels seek to vaccinate, against the the Covid doom and gloom by tripping sunshine to my room,
A three ring circus you will see, parading right in front of me,
There’s witty mouthy repartee, loud laughter and bonhomie,
Cheesy cheeriness holds sway, a horror fest both night and day,
Yet all this camp camaraderie, is but a bitter pill to me,
My freedom’s lost to martial law, its bitter taste lodged in my claw,
A plague upon this pantomime, you lock me up, what is my crime?
I am a mother, Granny, Wife, and yet you trash my precious life,
You are no substitute for love, with half a face and rubber glove,
When will you ever kiss my lips, or thrill me with your finger tips,
And lie with me throughout the night, to dream and spoon and hold me tight,
You will not hear me fret and cry,
Is this the way that I shall die?

Valerie Nelson

Mental Health Social Worker