It is estimated that there are 850,000 people living with dementia in the UK, with someone developing the condition every three minutes. By 2025, this number is expected to be over one million, with dementia expected to be the 21st century’s biggest killer.
The condition covers a number of brain disorders- the most prominent of which is Alzheimer’s disease- including vascular dementia, dementia with Lewys and more. Symptoms generally include memory loss and confusion as well as progressive problems with understanding and communication.
Whilst dementia can affect those of any age, with over 40,000 people under the age of 65 living with the condition, by far its largest demographic is the elderly. The Alzheimer’s Society reports that 70% of those living in care homes suffer from dementia or memory problems. Many of these are living with advanced dementia, with little recognition of the world around them or awareness of themselves and others.
Alex Matthews, carer and author of She’ll Be Alright, worked with Harry.
Harry arrives now to join the advanced dementia group. He made it through the ranks in the Royal Navy before joining the merchant fleet as a captain. But he was also a country lad. He spent the first few years of retirement taking care of a small farm. He sits with his back really straight in his hi-tech chair. His eyes tell us he is in a different world; his mouth slightly open as if he had just remembered to say something only to forget what he actually meant to say. If the members of this group move at all, they do it like new born babies, in jerky motions, unable to control their strength. Puppets who’ve lost their strings.
Those like Harry, the ‘puppets who’ve lost their strings’, have been left with very little at the end of their lives.
Their condition is terrible, but at least they are in a high-end care home. They all get a good bed wash in the morning. They are treated humanely even though they can’t remember who they are, and they are given choices even if they can’t make up their minds. A big effort is always made to preserve their dignity, so every care action performed is explained to them in spite of the fact that they may not be able to understand a word. And now they will be fed a full English breakfast cooked by a proper chef and served by trained carers.
However, sometimes, in some places, their dignity is not always preserved; it is not the priority. When Alex Matthews became a carer, he was shocked by some of the practices he saw. He recorded them all, without exaggeration, in order to demonstrate what can happen behind closed doors. In Harry’s care home, Alex saw neglect by many of the staff, but Trish* stood out.
She is now pushing porridge, big spoonfuls of it, into Harry’s mouth on one side and into Vivien’s on the other. Only Viv is not opening her mouth, so Trish is pushing that metallic spoon against Viv’s teeth and the porridge spills all over the place. She is not the only carer doing a lousy job of feeding people, but she is the worst. The spoon goes again against the teeth and the porridge dribbles down Viv’s face and onto her bib. The tall carer wants to say something about it but this happens every morning and no one ever complains; besides, he is fairly new in the care home and it isn’t his place to tell senior workers how to do their jobs. Why doesn’t the nurse say anything? But she is enthralled in her own food orgy. The tall carer decides to wipe Vivien’s face and change her bib without uttering a word. There is something red on Vivien’s lips. He is truly disgusted now and makes Trish aware of the situation. Is this blood? He wonders if this is supposed to be normal. If he is the only one who cares.
People with the later stages of dementia are often completely reliant on others for their care. Memory loss can be so severe that they are unable to recognise anyone around them whilst communication can be difficult or impossible, alongside many other more physical symptoms. It is at this point that dignity becomes even more important. The easy option may be to believe that their dignity does not matter because they do not understand or know what is happening, but they are still human beings. They are us.
When it comes to the residents, especially those with advanced dementia, what makes them human is the way we treat them. It is every step taken in order to protect that very humanity. From the state, who provides them with protection in the form of legislation, inspecting bodies, and funding, to care providers, who go the extra mile to ensure that their clients live in pleasant surroundings, eat good food, and get all the care and choice they deserve. To each and every carer who does their best to make sure that the people they care for are safe and respected. To the family members who come and visit despite the fact that they are no longer recognised. That is what makes all of us human, the way we treat each other and regard each other as human. That, and our respect for basic human rights. So when a carer asks someone who cannot answer, or even understand, whether they want to wear blue or green, they are regarding the person as human. When we cover a resident’s body with towels during personal care even though they can’t really see (or mind, in some cases) what is happening to them, carers are respecting the dignity and humanness of their clients.
When considering family, friends or your own future, being treated with dignity as a human being under difficult circumstances is of utmost importance. Having dementia does not take away a person’s humanity, whether cared for at home by family or in a care home setting. Dignity can and should be preserved, even at the end of life.
Dementia Awareness Week 2017 is calling everyone to unite against dementia, in order to raise awareness and understanding. By raising awareness, the Alzheimer’s Society hopes to, amongst other aims, improve care. Examples such as that of Harry show how important this aim is.
But now we are looking at Harry’s life history album and new pictures emerge. Pictures of him sitting in his Franciscan pose, his beard and hair smeared in porridge. There are new photos in Vivien’s album too. A defenceless old woman, sitting in a foetal position trying to protect herself, her face covered in porridge and blood. Paul too. He never got his pint, but a covering of porridge all over his face and apron. And there are new pictures in Tom’s book too, as in Paul’s, Kath’s, Malcolm’s and many more. In their books we now see pictures of neglect, because when porridge gets smeared on someone’s face and no one says anything about it, we are depriving them of their human qualities. We are failing to provide the quality of care that people expect. The last pages of our residents’ lives become smeared pages.
If you would like to know more about the Unite Against Dementia campaign, visit the Alzheimer’s Society website.
After documenting the hidden neglect he saw in care homes, Alex Matthews has put together She’ll Be Alright, a collection of short stories based upon what he saw. She’ll Be Alright aims to show this hidden neglect to both those working in social care and families, in order to better inform people and improve understanding and care. The stories are accompanied by the relevant legislation as well as opportunities for reflection and discussion. You can read the full extract of ‘Smeared pages’ from She’ll Be Alright here.