How to care for people with dementia is one of the most pressing problems of the 21st century. So says
Professor Sube Banerjee , an expert in old-age psychiatry at the University of Plymouth.
An estimated 850,000 people in the UK are currently living with this devastating illness, a figure set to double in the next 30 years. In 2019, the cost of dementia care in the UK was £35 billion – that figure is expected to rise above £94 billion by 2040. Yet this money is often not well targeted.
“In the UK, we spend huge amounts on relatively low-quality care towards the end of life for people with dementia,” says Banerjee. “Eighty-five per cent of people in care homes have dementia, making our care-home spend essentially about long-term care for dementia.”
“If we spent more on diagnosis and support earlier in the illness, we could prevent unnecessary admissions to hospitals and care homes, saving money and enabling people to have a much higher chance of living well with dementia.”
Banerjee, executive dean of the Faculty of Health at the University of Plymouth, was a chief architect of the UK’s National Dementia Strategy. Published in 2009, it was one of the first and most comprehensive initiatives of its kind in the world. Having also been instrumental in making dementia a global priority for the World Health Organisation, he is behind many recent advances in how we think about and care for people with the condition.
“People now understand that dementia is not a natural part of growing old, it is an illness,” says Banerjee. “We have also moved from only a third of people being diagnosed quite late in their illness to a point where, at least until the pandemic, two thirds were diagnosed through a nationwide network of assessment services.”
A renewed sense of urgency
Banerjee believes the pandemic turned back the clock five to seven years. He now wants to see dementia placed at the heart of health and social care policy, with a focus on earlier diagnosis, good post-diagnostic care, and increasing the numbers cared for at home.
“Few people with dementia would choose to go into a care home, yet often end up there because dementia care has become atomised,” Banerjee says. “As a result, we have poorer care, more mistakes being made, more hospital admissions, more illness and more families breaking down and unable to care for the person with dementia, due to lack of support.
“There are many imaginative ways we could improve dementia care at home. If we get that right, we can fix much of what’s currently wrong with the health and social care system.”
A lot of the research Banerjee is leading is designed to explore how people with dementia can live better. “Dementia is a complex illness that demands complex solutions,” he says. “There is no one size fits all and no magic bullet.”
Fairer access to care
One of Banerjee’s most ambitious programmes looks at inequalities in dementia care. The
DETERMIND project examines factors – such as ethnicity, sexuality and socioeconomic status – that cause variations in quality of life and care.
The project is also examining the impact of earlier and later diagnoses. “From my interactions with families affected by dementia, one of my enduring beliefs is that it’s better to know your diagnosis than not to know, so you can plan for the future, and so everyone knows what is going on,” says Banerjee. “Knowledge is power.”
Time for Dementia, aims to create a generation of healthcare professionals who have a better understanding of the condition.
It involves pairs of nursing and medical students making three-monthly visits to people with dementia and their families over two years as a compulsory part of training.
“They get to see the world of healthcare through the eyes of that family, to understand what it means to be old and frail in our society, and to look critically at how the health system deals with them,” says Banerjee.
The programme, now in its seventh year, is set to roll out across the south of England, hopefully followed by the rest of the country. “We’re getting brilliant feedback and students who have been through the programme and are now practising healthcare professionals are far more confident and positive about working with older people and those with dementia.”
A third project,
RadioMe, taps into the popularity of radio among the age group most likely to be diagnosed with dementia.
“There’s a lot of emphasis on big data and health tech apps in the field of healthcare, which is fine until you’ve got dementia and 70-year-old thumbs,” says Banerjee.
RadioMe seeks to take a familiar technology and tailor it to the needs of people with dementia. A radio could be programmed to play a calming, personalised playlist or to remind people to take their medicine.
And, as Banerjee points out, the University of Plymouth is well placed to lead such research.
“In Plymouth, we have an older population, a relatively small number of NHS and social care organisations, and the university has links with other institutions in London, Manchester and Newcastle,” he says.
“This enables us to generate solutions for the whole country that will enable people with dementia and their families to live well now and in the future.”