If we can’t defy the stigma, how can we find a treatment?
There’s a silent crisis gathering pace, and it’s all around us. One in eight people die of it. Dementia must not be an ordeal endured alone.
By Alex Jones
It is the most heart-wrenching experience, watching a loved one forget your name, fail to acknowledge your shared blood, fail to comprehend why you’re visiting.
In the midst of muddled thinking, there is the occasional fleeting flourish, faint glimmers of recognition, sparks of conversation, until they are fighting the fog of confusion all over again, pondering: Who are you? What are you doing here? It is at this moment, they are gone once more, a stranger once again.
It’s impossible to make sense of an illness that is so insidiously cruel, how it can just dismantle a soul, shatter and spoil memories, sniggering and smirking like some impossibly horrific memory-robbing Iago.
I sit here at The Grove, a Lincolnshire care home, where my grandmother lives with vascular dementia [70% of care homes in the UK are occupied by dementia sufferers]. I watch as Betty, my grandmother’s neighbour in the home, sits and stares out the window besides her, supporting her chin on her knuckles, short and slim in her tartan skirt and sweater. “Is Ian working late today? He should've been here by now.” She tells her carers. “No Betty, he’s not coming today”, they answer. Ian died eight years ago. Cooking dinner for Ian’s arrival home from work was a forty-year endeavour for Betty: five days a week, two hours a day. She now can’t quite grasp whether her husband is gone for good, or she’s simply waiting for the sound of the front door key turning the lock.
This is the concept of the photo album: people have distinct memories saved like photographs, remembering emotions as well as the facts, and when these facts disappear, the emotions remain.
Dementia is the scourge of our age. There is no cure, just care. We turn our backs on its existence because we not only fear it, but feel helpless in the face of its advance. Memory loss and dementia is an all too familiar misconception, one is natural, the other an utterly unrelenting disease. This misconception is a stigma, a source of shame, a reluctance of sympathy at an illness occurring behind closed doors.
In 2014, there were more than double the amount of deaths due to all cancers than dementia. By 2040, this will be reversed. Dementia in now the illness we most fear. It is, as one doctor told me, “an illness that doesn’t match the foundations health care created.”
Anna Bennett, Service Manager of the High Peak and Dales Rapid Response Team, said: “Diagnostic rates have increased dramatically in Derbyshire over the last 5 years. The debate is whether this is because we are better at diagnosing, people are living longer or we’re just more aware of the condition itself.”
The Postcode Lottery
Dementia care in the UK is a postcode lottery. But why?
Geographical disparities in dementia care across the country has left thousands of sufferers shouldering their own costs, and struggling where services are sparse.
In Yorkshire and Derbyshire, societies and health care services work collectively not to adopt this trend.
With only Sheffield and the High-Peak District having recognised expertise for dementia – Dementia Rapid Response Teams – the onus is on them to prove where commissioners should be prioritising their spending.
They work tirelessly for the NHS to provide essential services for those referred from a GP.
She says: “Patients are heavily reliant on good GPs to refer them to specialists for treatment. These include memory assessment services, mental health teams and rapid response teams."
Sheffield Dementia Involvement Group [SHINDIG] Logo
Sheffield Dementia Involvement Group [SHINDIG] Logo
The Sheffield Dementia Involvement Group [SHINDIG] is a city wide forum that provides a platform for people with dementia and their families to share personal experiences of Sheffield’s services and level of care.
In an organization collaborated by Sheffield Alzheimer’s Society and Sheffield Health and Social Care NHS Foundation Trust, dementia sufferers have the chance to talk to carers, other dementia victims and voluntary academic staff. This feedback then helps relevant organisations improve their care.
It is events like these, held four times a year, that sets Sheffield out as one of the leading areas for dementia care within the country, and makes the sessions worthwhile for all involved.
An organisation that attends SHINDIG is the Sheffield Dementia Action Alliance, set up in 2012, which has recently received a grant of £195,000 from Sheffield City Council for the next three years to make Sheffield a dementia friendly city.
Kath Horner, Chair of the Alliance, said: “My motivation to set the alliance up was to create a social change. It brings people together and creates the more aims to improve community care.”
The work includes dementia cafés across the city, which are a safe and welcoming place for those suffering to socialise and stimulate their brain. These are what Kath said are the best part of her job:
“Seeing people singing, dancing, enjoying them. They’ve found something that makes them smile and that matters most to me."
Elsewhere, Sheffield Theatres and The Moor have partnered up for a special dementia-friendly performance of Guys and Dolls this Christmas.
Laura Winson, of Sheffield Theatres, said: “A dementia friendly performance is more informal and relaxed, and changes are made to meet the needs of people with dementia, such as sound and lighting."
The Bigger Picture
We cannot continue to overlook the hard medical statistics.
Dementia and Alzheimer’s disease was the leading cause of death in 2018, with the proportion increasing for the fourth consecutive year – up from 12.7% in 2017 to 12.8% in 2018.
The Office for National Statistics (ONS) released the figures earlier this year, showing that almost one in eight people died from the condition, and the number of people living with dementia is expected to rise to over one million people by 2021.
The increase in diagnosis was a result of people living longer and surviving other illnesses, said the ONS.
Blame for this cruel illness has hovered like a mist without ever quite touching anyone. The Alzheimer’s Society believe it's “a scandal that people are forced to spend their life savings and sell their homes to pay for care.”
Boris Johnson couldn't have been clearer in his first speech as Prime Minister when he insisted he will finally come up with the answers to one of the greatest policy failures of the last 20 years.
It is easy to forget in the humdrum churn of parliamentary votes, and the daily grind of debates, that the Prime Minister promised to “fix the crisis in social care once and for all”, stating that he'd protect the elderly from fears of having to sell their home to fund the cost of care.
Boris Johnson's first speech as PM [July 2019]
Anyone who has nursed a loved one, sitting there helpless as the lights start to dim on that once-bright mind, will have felt encouraged at this pledge. Dementia is the only condition in the top 10 causes of death without a cure and it is feared without the awareness, funding and willingness of sufferers to participate in research, a cure may be years away.
The stigma of dementia negatively labels sufferers, meaning they’re less likely to seek diagnosis and get support once diagnosed. It is due to a lack of public knowledge and understanding, people refusing to imagine the tragedy being played out behind the front curtain.
We have a reductionist tendency to see every illness through the prism of physical symptoms, and have become so skilled at stitching people up bodily that for many, it is the brain that goes. Patients fight the thickening fog alone, believing they’re wrestling an ambush, a trap. No stigma here; just a shared human lament.
So I ask again… If we can’t defy the stigma, how can we find a treatment?
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