Losing one parent to dementia is heartbreaking; losing both is almost unthinkable.
For Laurence Geller CBE, the experience of watching helplessly as both parents suffered with the cruel disease lit a fire inside him to prevent future generations enduring the same ordeal.
“They died six years apart,” Geller says. “My father had comorbidities. They probably triggered his dementia. After my father died, my mother let herself go, and allowed herself to have dementia, if you will. She couldn’t while she was caring for him.”
Geller, a long-time philanthropist who made his fortune in the hotel industry, is speaking to the JC shortly after the conclusion of the Geller Commission, an independent review into clinical pathways for people living with dementia in the UK.
It found that one in six NHS hospital beds are currently occupied by a dementia patient, a figure set to increase to one in four by 2040 without urgent intervention.
Dementia patients are reportedly five times more likely to remain in hospital despite being medically fit to leave, at an annual cost of £2.8 billion.
“The hospital seemed to be the nexus of the issue,” Geller says. “People are being dumped there. Without the family, they won’t get fed. There’s delirium, there’s confusion, there’s not enough attention. They’ll soil themselves trying to get out of bed and fall again. There isn’t one thing – it’s a cacophony of noise surrounding a bunch of things.”
Geller isn’t particularly surprised by the state of affairs.
“It’s not a national imperative,” the 78-year-old says. “What has been the national imperative here? It’s cancer.”
He is shocked that a formal qualification isn’t a legal requirement for dementia carers and by the paucity of what is currently on offer. “[The courses take] three days to train a carer. [Would you] put your mum’s life in the hands of somebody after three days?”
Common standards, he emphasises throughout our interview, are the master key to solving a lot of the problems.
“We can train people to common standard procedures of care, common discharge and post-discharge procedures, and an educational system,” he says.
To that end, prior to the commission, Geller funded the first Master’s degree in dementia care. It is taught at the University of West London, where he is chancellor, and where he also set up The Geller Institute of Ageing & Memory, a place of research into dementia care and other diseases afflicting older people.
He has also opened several care homes in London over the past decade – including the plush Belgravia facility where we met – and uses them as “test kitchens” to trial new care methods.
“The demand for care in central London was overwhelming, which is logical because it’s too expensive to find the real estate,” he says.
“You can put enough technology in a bedroom or in a house, so you know when somebody has a problem,” he continues. “In here, for example, we monitor sleeping patterns, so staff don’t have to serve at night, and we have acoustic monitoring, so if you saw [someone snoring and struggling to breathe], we’re coming in.”
They also have bed pads whose technology enables carers to know if a patient is leaking. “Because if you’re leaking, you may try to get out of bed, and if you get out of bed, you may fall over.”
Laurence Geller CBE (credit: courtesy)[Missing Credit]
With a deep personal and professional understanding of dementia care provision, Geller is well-placed to speculate on what the future should hold following the report.
“Success looks like far fewer people in hospital beds for dementia, and those who come in being treated in a multidisciplinary fashion, with common standards, common procedures, common diagnostics, common treatments,” he says.
“This is countrywide. And, by the way, living longer doesn’t mean lying in a bed being sedated. Living longer is living with dignity.”
Achieving that will be no mean feat. Firstly, Geller says it will require support from the right people, who share his impetus – “politicians, the secretary of health, people within the constituencies who will take it on”.
It will also require the right environment to implement the new standards for the first time, before deploying them nationwide, says Geller.
“The ideal would be to take a trust where you’ve got three or four hospitals and use that as a manageable test prototype. Learn from that. Learn from the findings. Then roll it out.
“You also need the demographics that suit it,” he continues. “A population which is probably of mixed ethnicity, older, and staying around longer in that area.”
Training carers to common standards is the most salient goal, but informal carers – who look after relatives with dementia without being employed to do so – tend to slip under the radar.
“One in three of us will get dementia, and there are four or five people in [a patient’s] personal circle who are involved in caring,” Geller says.
“You have to train people in what caring for a dementia patient is. They don’t know. If you said to me: ‘My mum’s got dementia’, and the first thing I said to you was: ‘Have you fixed the kitchen?’ – you’d say: ‘What are you talking about?’
“Well, she may blow the bloody place up by putting a kettle in the microwave, or leaving the gas on, or having a pan explode, or falling over and banging her head on the kitchen table. There’s so much that can be done with common standards.”
Several times throughout the interview, Geller references his Jewish upbringing as a contributor to his altruistic nature.
“The culture of care and caring for others is part of a Jewish tradition,” he says. “We have these terms: ‘tikkun olam’, ‘kehillah’, ‘tzedakah’… I believe in all of that.
“And the fifth commandment is to honour your father and mother, and I’m going to do that,” he continues.
“If I’d have known a third of what I know now, my parents’ lives would have been longer and better, and I would have known how to deal with them. And I’m ashamed of myself.
“I’m going to pay for that that shame by making as many lives better as I can. I will not accept that there is no cure. I will not accept that I’ve got to wait three generations before I can see [dementia care] even getting to where cancer is today.
“I am an idealist, an evangelist, and probably a putz, but I ain’t stopping.”
To read the full report from the commission, go to: thegellercommission.org or click here.
To learn more about The Geller Institute of Ageing and Memory, go to: uwl.ac.uk/research/research-centres-and-groups/geller-institute-ageing-and-memory or click here.
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