by Sarah Leanney, R&D Researcher, Safe As Houses
Everybody seems to be talking about “Help”, Channel 4’s heartbreaking single episode drama by Jack Thorne. The programme tells the story of Sarah, a newly recruited carer dealing with the devastating impact of Covid-19 on Bright Sky, a fictional care home for the elderly in Liverpool.
We watched as Sarah was handed a yellow tunic emblazoned with the Bright Sky logo and told she’d have one week’s induction whilst undertaking her job. Just one week in which to master the skills to care for some of the most vulnerable people in our society - those experiencing anger, frustration, fear, sadness and panic. Just seven short days to learn about the myriad of cognitive, personality and functional changes that occur through Dementia and Alzheimer’s Disease.
Early on, Bright Sky are told to make space for untested elderly patients being discharged from hospital to free up beds and despite the government’s promise that it had thrown a “protective ring” around care homes, even newbie Sarah questions how safe this might be.
Before long the staff and residents begin to face the consequences of the lack of PPE and testing provided to the care sector during the pandemic. This effectively pushes them into the front line of a healthcare crisis without adequate preparation or protection.
Over a year later, we now know that the virus disproportionately affected people with Dementia, with one in four Covid-19 deaths involving a person struggling with the condition. We also now know that the adult social care sector only received approximately 10% of its estimated need of PPE.
As the care home staff also begin to fall ill, we follow Sarah as she is left to cope single-handedly on a 20-hour shift. This provides us with a genuine insight into the struggles faced by residents and staff across the country in the early months of the pandemic.
"a spotlight is shone on the many issues affected by Covid-19..."
Throughout “Help” a spotlight is shone on the many issues affected by Covid-19, including fundamental problems within the adult social care system and various Government failings. What is less addressed however, are the issues faced by Tony, the other main character within the drama.
Tony has Young Onset Dementia and aged 47 is several decades younger than most of the home’s other residents. Although understandably often thought of as an older person’s disease, around 5% of the UK’s circa 850,000 people with Alzheimer’s disease are under 65. There are many causes of Dementia, with Alzheimer’s disease being the most common.
Dementia is termed “young onset” when it affects people between the ages of 30 and 65, and is also referred to as “early onset” or “working age” dementia. Dementias that affect younger people can be rare and difficult to recognise with problems with language, vision, behaviour or personality being the first symptoms, rather than memory issues.
Tony suffers through periods of both confusion and violent outbursts that other members of staff struggle with. From her very first visit to Bright Sky however, Sarah seems to instinctively understand that a different approach to Dementia care is required and as a result a special bond is formed between the two of them. She learns more about Tony’s journey through Dementia and why he now is in need of full-time residential care.
"Although younger people experience similar symptoms to older people with Dementia, the impact on their lives is significantly different."
Although younger people experience similar symptoms to older people with Dementia, the impact on their lives is significantly different. Younger people are more likely to still be working when they are diagnosed. Many will have significant financial commitments such as a mortgage and they often have children to care for and in many cases, dependent parents also.
Dementia is not an illness that people expect to suffer in their forties or fifties and people can be very reluctant to accept there is anything wrong when they are otherwise fit and well.
Each person with Dementia experiences the progression of the condition in their own individual way and many are fortunate enough to be able to remain living at home in familiar surroundings with support and care being provided by family or specialist domiciliary schemes run by local authorities and private operators.
However, for many people, the disabilities and changes resulting from Dementia will necessitate the move into a residential care home, and herein lies the issue for people like Tony.
All people with Dementia are people with lives, experiences and skills who deserve care and dignity, but younger people with dementia also deserve age-appropriate services. Physically, younger people with Dementia are usually fit and healthy. They are not yet prone to age-related illnesses such as hearing loss or arthritis and it is important that younger people are assisted to maintain their physical health and wellbeing for as long as possible. Providing the correct treatments, whether that is drug treatments, non-drug approaches to changes in mood and behaviour, or counselling and psychotherapy, is essential in caring for young onset dementia. In Tony’s case the ‘easiest’ option for Bright Sky is to medicate him to a near catatonic state, rather than address the unique issues that his age presented.
Unfortunately the reality is that if a younger person with Dementia needs full-time nursing or residential care, where they live may determine the outcome. Some parts of the country have no services or projects aimed at younger people with Dementia.
According to the Royal College of Psychiatrists and the Alzheimer’s Society, in 2004 there were only 20 residential and nursing homes in the UK designed for younger people with Dementia. This number will no doubt have increased in the intervening 17 years, however with over 40,000 people currently estimated to be living with Young Onset Dementia within the UK, there is clearly an enormous deficit that needs to be addressed.
This is why we at Safe As Houses want to talk about Tony.
Having established our organisation as a leading provider of solutions within the care sector and with a determination to enhance the lives of society’s most vulnerable individuals, this conversation is one of our top priorities. We need to talk to Registered Providers, Care Providers, Operators and Commissioners about how we can develop the high-quality, specialist alternative to home care needed by younger people with Dementia.
As Sarah herself pointedly asks during the drama “When did all lives stop being worth the same?”. Let’s have the conversation that proves this need not be the case.