The Big Interview: Professor Sube Banerjee MBE
Our Executive Dean of Health and Professor of Dementia talks about his work to make global strides for those impacted by dementia
The boy too young to go to war but who managed to reach the trenches of western Europe. The girl who came to London in the 1920s and experienced life in all its forms working in pubs along the Old Kent Road. The soldier who saw first-hand the carnage left by the retreating Germans at Montecasino. The people who lived through nightly bombing raids by the Luftwaffe on London’s docks. By the late 1980s, London was a very different place to what it had been in the first half of the 20th century. Yet these were the stories that Sube Banerjee was hearing on a daily basis. Fascinating. Engaging. Memories so vivid that simply hearing them painted a harrowing picture in a listener’s mind. But stories told by people unable to recall what they had eaten for breakfast that morning.
“For people with dementia, the difficulty is in coding new memories,” Sube says. “You tend to be able to recall what you did in the past. And those things still define you. You aren’t any less of a person because you are a person with dementia.”
London’s Hither Green Hospital had been built in the year of Queen Victoria’s Diamond Jubilee. But in 1989, it was pioneering a new approach to psychogeriatric care. Doctors and nurses worked directly alongside social workers and occupational therapists. Rather than relying solely on consultants to see patients, everyone did. They contributed their own expertise. But, crucially, all realised that it was only by working as a team that they would deliver the best outcomes for those trusted into their care. This approach marked Sube’s first forays into older people’s mental health care. Having completed his medical training, he had decided he wanted to work in psychiatry.
His first two jobs in adult psychiatry fuelled that passion. But his third, in old age psychiatry, was widely dreaded. For medical students in the 1980s, it was drummed in repeatedly that older people were a bad thing. They had social problems. They stayed in hospital too long. They blocked beds that could be used to treat younger people.
“It’s quite similar to what we hear today,” Sube says. “But what I grew up learning went much further. There were really offensive terms like GOMER, an acronym for ‘get out of my emergency room’ from the book House of God, that talked about older people in hospitals getting in the way. Older people’s mental health was really at the bottom of the pile in terms of esteem. It was the Cinderella of all Cinderellas”
The team at Hither Green actively swam against the tide. They listened. They talked. They deployed personal skills. They used the passions of individuals in the best interest of patients. But, perhaps even more importantly, they sought to change the narrative. In Sube’s 18 months at Hither Green, he and his colleagues saw countless people with depression, dementia, or a combination of the two who weren’t being treated. Chiefly, it was because nobody would diagnose dementia. And if they hadn’t been diagnosed, they didn’t get the support they needed. It led to a lot of unmet need. This was a war generation who didn’t ask for much, and didn’t complain when they were given nothing.
Like many neurodegenerative conditions, dementia is often described as cruel. It is seen as eating away at the patient and the relationships they have with their family. But knowledge is power. There may be no magic pill. However, by knowing what the problem is you can acknowledge it. You create awareness among loved ones that it is the illness talking and not the person. There are psychological, social, practical, financial actions that can be put in place. It is possible with help and support to “live well with dementia”, which became a theme of Sube’s subsequent work. To change the perception, you needed to kill the misconception that there is only horror associated with dementia. People can and do continue to live good lives. They just need support.
Alzheimer’s disease: Pathological Tau protein (red-orange) phosphorylation (yellow) leads to disintegration of microtubuli and aggregation to neurofibrillary tangles (orange) in a neuron axon.
“We had a feeling of crusade in terms of bringing something into the light that had been kept in the darkness” Sube says. “The false belief it is a natural part of ageing. The false belief there is nothing you can do about it. The false belief that you can’t speak about it. The stigma.”
It is no coincidence that the UK’s first National Dementia Strategy was titled Living Well with Dementia. On completion of his higher training at the Institute of Psychiatry and the Maudsley Hospital, Sube was appointed there as Senior Lecturer and honorary consultant in old age psychiatry. As someone interested in developing and evaluating new treatments and in service improvement, Sube was appointed as the lead consultant for older people’s mental health. It gave him immense freedom to innovate. One such novel approach was the development of the Croydon Memory Service Model to address the underdiagnosis of dementia in the community. In its first year, the first memory service doubled the rate of diagnosis, and it did so again the next year. It delivered improvements in the quantity and the quality of diagnosis.
On the back of this, and further work modernising services across the whole of south east London as the Maudsley’s Clinical Director for older people’s mental health, Sube was asked by the Department of Health to co-lead its new dementia strategy. Prompted by Alzheimer’s Society and others, the Labour government of the time recognised it as a growing issue. But while each case needed an individual approach, care needed to be underpinned by a national strategy. Within two years, including a great deal of consultation and engagement, the work was complete.
Writing in its foreword the then Secretary of State for Health, Alan Johnson MP, said: “Dementia is not an illness we can ignore. This is a key step towards achieving the goal of building health and social services for dementia that are fit for the 21st century.”
The UK became the second country in the world to have such a strategy. It crystallised the concerns of organisations like Alzheimer’s Society. It is still the underpinning strategy referred to by the UK government in its approach to dementia. It set out that work was needed to improve public attitudes and understanding. But professional perceptions also needed to shift. Clinicians needed to become more aware of the help they could offer, but also the help being sought. Dementia, as Sube says, does not respect boundaries in the healthcare profession, or what is done by families or care services.
“It was time for dementia to get its voice,” he adds. “We were able to articulate that clearly, and created a coherent core of people with a shared analysis and vision in government and nationally. We based this on the largest and most inclusive consultation ever in the Department of Health. That has stood the test of time.”
It has also been influential beyond the UK. Where there were two national strategies in 2009, there are now around 100. It is a core priority of the World Health Organisation. Its development and publication also coincided with a cultural shift in how dementia is perceived globally. Japan, for example, has the oldest population in the world. It has a tradition of respect for older people. But in the early 2000s, it had some of the worst quality dementia care. People were physically restrained, tied onto beds in warehouse-like care homes. Chiming with this, the Japanese word for dementia at the time was “chiho”. Literally translated it means idiocy, stupidity. As a polite and reserved nation, people wouldn’t speak of their elders in that way. It resulted in the condition being largely hidden.
The country’s Ministry of Health, Labour and Welfare decided a change was needed. A new neutral term – “ninchi-sho”, cognitive disorder – was introduced. A more accurate less value-laden reflection of the illness, the response was noticeable. Within a year, one million people had come forward and the Dementia Friends movement, now functioning globally, had been spawned.
“I was lucky enough to spend time in Japan working with them on their national strategy,” Sube says. “They carried out analysis of what they needed to do, and then did it. They took the model for diagnosis we developed in Croydon and implemented it en masse.”
Since the turn of the century, awareness and action on dementia has increased exponentially. But for almost three years, a different health threat has dominated the news agendas.
The COVID-19 pandemic focused medical minds across the world. And while it brought attention to people with dementia, it was not always for the right reasons. A disproportionate number of people with dementia died all over the world. They missed out on regular care as a result of restrictions. They were placed directly in harm’s way when hospital patients began being discharged into care homes.
Added to that, the rate of prescriptions for anti-psychotic medication increased markedly. Sube had led a national Department of Health review which found such medications are responsible for a 1% increase in mortality in people who take them for three months or more. In 2009 they were being prescribed to at least a third of people with dementia. With 860,000 people with dementia in the UK, they were therefore causing 1,600 deaths that were avoidable. The review resulted in prescriptions for the drugs in dementia halving. But COVID undid much of that good work. As the restrictions gripped, people became agitated. Dementia, after all, is a tough thing to have and the pandemic meant other treatments were not available. So GPs and other services reverted to their old ways. The ultimate result of this is yet to be fully assessed.
However, the impact of COVID was not solely felt by patients. Research by the DETERMIND team, a £5m programme led by Sube studying inequalities and inequities in dementia care and outcomes, showed that in the face of lockdown after lockdown, people with dementia’s quality of life actually stayed broadly the same. The people most harmed were their family carers. In areas where memory clinics continued, the carers had better outcomes. But where they were closed the harm was higher. The carers, much like their loved ones, were living with dementia 24/7.
So would the scientific approach to addressing the pandemic work for dementia? Sube’s response is unequivocal.
“The coronavirus is so much more simple than your brain,” he says. “In ten months we had a vaccine for the virus, and that was amazing. But in terms of dementia care, the same period took us back about ten years. The greater digitalisation. The challenge of seeing doctors. The increased waiting times. They are all particularly challenging for people with dementia. It meant they were much less likely to come forward for help.”
There is no doubt COVID has resulted in challenges across the healthcare sector. And people with dementia are one of the groups to have suffered most. But, as the world emerges from the pandemic’s shadow, there are two words Sube repeats throughout our conversation. Hope. Positivity. Given everything known, and all that is still be known about the condition they may seem out of place. But that disregards just how far things have come. Saga, the company serving the needs of those aged 50 and over, conducts an annual poll of the health conditions people fear the most. In 2016, for the first time, dementia appeared above cancer. For many, that may seem a bad thing – not a cause for positivity. For Sube, it is an acknowledgement. Yes, dementia is a real problem. Yes, it is something we should be concerned about. But yes, people are less afraid to talk about it. The stigma has well and truly been broken.
The main global challenges, however, remain. Continuing to improve public attitudes and understanding. Instilling hopefulness. Improving the quality of post-diagnostic care. Creating a climate where people feel they’ve not been abandoned. Where they feel supported. Where they know they can ask for help. And where they trust the professionals to find ways to prevent harm.
“Most of that is to do with great quality human interaction and support,” Sube says. “It’s things we can already do – we just need to do it more and for all.”
In a significant about-turn from his own medical training, Sube also leads an initiative through which students learn about dementia. Since 2015, the Time for Dementia programme has been delivered in seven universities and across nine professional courses. It provides not only knowledge and understanding, but also empathy and compassion. The skills students will need to support not only families living with dementia but also those where there are people with multiple conditions and frailty in the future. The programme is delivered to nursing students in Year 1 of their degrees. For medical students, it comes in Year 2.
“It is further evidence that we’ve come an immensely long way,” Sube says. “With any illness, there is a steep slope to climb before you make the major breakthroughs. We are making that ascent and solutions are in sight. Dementia has always come with the historical problem that we value older people less, so there is a lack of will. I genuinely feel that is changing. And that is undoubtedly a cause for hope, and positivity.”
Amyloid plaque forming between neurons in Alzheimer’s disease