*Content Warning: this article contains themes of death*
Words by Ellie Harbinson
Imagine a world where everything around you is alien, people you used to know, items in your home, your whole life becoming one frustrating blur. You wake each morning to a home which was once resonate with friendly voices and populated with familiar faces. You suddenly feel as if your surroundings are foreign, unsafe and frightening. You spend your days secluded from the world you have always known, alone and vulnerable, when all you need is company, a hand to hold and someone to talk to.
For dementia patients, this loss of social interaction, over the course of the pandemic, has been an inexcusable catalyst for the rapid deterioration of vulnerable individuals.
In September this year, The Alzheimer Society released a horrifying report; ‘Worst Hit: Dementia during Coronavirus’. They revealed that “over a quarter (27.5%) of people who died with Covid-19 from March to June had dementia”. These statistics are a serious indicator that more needs to be done for such a vulnerable group of people in society.
When speaking to Renata Pal, who works for the Alzheimer’s Society, she outlined the effect that the lack of social interaction, during the pandemic, has had on dementia patients. She worries that the cognitive functions and memory of those who remained at home are “definitely not the same”. Although she says, “Some people are still doing well which is good news”, she also highlights how “for a lot of people it affected them massively.”
The Alzheimer’s Society has provided much needed support for the community and has luckily been consistently present for vulnerable people and carers through online platforms. Renata speaks passionately about Singing for the Brain, which is a social activity for patients to look forward to. It has luckily transitioned from face-to-face meetings onto Zoom. There are also multiple chat platforms through the charity; Companion Calls, Talking Point and Covid-19 welfare calls.
This lack of social interaction for dementia patients, has been the key reason for their decline and, in many recent tragic situations, people have lost their lives, feeling alone and neglected.
Natasha Newman, a carer from Bath, told me the heart-breaking story of a client and friend she cared for twice a week, before the pandemic. She was a sociable, bubbly lady who volunteered at a local shop and thrived on social interaction. Come March 2020, she was isolated with her husband, cut off from family and Natasha, leaving her mental and physical health to decline.
Natasha states: “She became very poorly, stopped eating, low on mood, cried a lot. I was able to send her voicemails once a week as her eyesight wasn’t too good, so she was unable to see me properly on a video call. I had a call in May to say she was now in end of life care and sadly passed away two weeks later.”
She strongly believes that “this could have been avoided if all of her social interaction weren’t stopped so quickly, all at once.”
When speaking to both Renata and Natasha, it was clear that more needed to be done for these patients when admitted to hospital, during the strict restrictions of the pandemic. As vulnerable individuals who have declined due to minimal social contact, being taken to hospital alone, is an extremely traumatic experience.
Natasha conveys that changes need to be made to adapt to dementia patients in hospital; “They should never be admitted without a family member or carer being with them. It’s cruel and unfair. I don’t know why in these circumstances that they can’t have someone with them. We always talk about person-centred care. How can that be given when; hospital staff do not know the individuals” and the staff “may not be able to give correct advice”.
She further talks about a patient of hers who had been admitted to the hospital three times during April through to June. Her time in hospital was a horrifying experience, as “She wasn’t able to tell the doctors what was wrong because of her dementia” which meant she was sent home three times with antibiotics linking her symptoms to a UTI.
Renata highlights a need for a better understanding of dementia in hospitals, but also focuses on how the government have increased a certain understanding on the situation, for patients; “It is getting better and also the government and the councils are learning how to deal with things because at the beginning they didn’t know what to do – they wanted to save people, but on the other hand, if you have dementia, your emotional state and your emotional situation is really important. So they need to see their loved ones to be able to stay alive.”
Among the unsung heroes from the pandemic are the carers who have also been impacted, throughout the pandemic, after becoming extended family to many patients. For many their job has become a 24/7 work day and understandably has taken a grave emotional toll on their mental health. Within the executive summary of the Alzheimer Society’s report, they state that “95% of carers in our survey reported a negative impact on their mental or physical health”.
Natasha comments on her experience, “This pandemic has truly made my job very hard at times, not just for me, but for my clients and their families. I always give 100% when I am with my clients, but over the last 10 months things have been very difficult, sad and upsetting.”
However, she emphasised that she loves what she does and “Wouldn’t change it for all the money in the world.”
Sitting down with my PG Tips during our third lockdown, I began to watch the news unfold yet again. As I listened to the devastating statistics reel out of my television speakers, I could not help but think about the millions of other people doing the same ritualistic activity as me, with their tea bag of choice by their side. I wondered how many of them have a relative who is a victim of dementia, or even suffers with dementia. I contemplated the vulnerable people watching the BBC news at 6, consuming the horrors of the world, whilst trapped from society. I felt pained by the stories I had been told from Natasha, of patients deteriorating, because they are unable to get their haircut at the shop down the road and individuals who have rapidly worsened, due to not being able to meet up for that weekly catch up with an old friend. After hearing how many dementia patients have been lost this year, it begs the question, have the government truly done enough to care for these individuals and their families?