Whenever he hears the comment, “there’s nothing you can do for someone with Alzheimer’s”, Prof Peter Garrard gets frustrated. “I immediately think, ‘keep those people away from my patients’,” he says. “My aim is to treat a person with dementia with dignity and respect. It’s not helpful to assume all is lost and rush straight to the end stages of the disease.”
He wasn’t always a scientist: his first degree was in classics at Oxford. “But I became fascinated with the philosophy of mind and the problems of consciousness,” he says. “Personal identity also interests me greatly. What makes ‘me’ who I am? It’s one of the first questions we ask ourselves in childhood.”
These questions led him to medicine and then neurology, and he is now a professor at St George’s hospital in London, specialising in neurodegenerative dementia, cognitive disorders, progressive language disorders, early onset dementia and frontotemporal dementia.
On making a diagnosis, Garrard, 63, finds clues in his patients’ use of language. “They start to use fewer complex words and describe things in a roundabout way,” he says. “One of the first questions I ask when a new patient arrives is: ‘how did you get here today?’ If they answer: ‘I came on the big thing’ [instead of the bus] or ‘I arrived at the place where people go in and out’ [instead of the station, then I’m afraid that’s a sign.” People in the early stages of dementia often lose their confidence and decisiveness in how they present themselves, he says.
By the time his own mother, Sheila, started showing these symptoms, he had been a consultant for 12 years. She was 78. “I started noticing that Mum was not picking up on subtle aural messages,” he says. “For example she didn’t recognise my voice when she answered the phone.
“Otherwise, she would confuse similar-sounding but very different words: my favourite absurd conversation resulted from confusion of the word ‘Stoke’ [the city] and ‘stoat’ [the mammal].
“Mum had always been well-read, but her language was degenerating and she was using more simple words. Everything would be ‘nice’ or ‘bad’ rather than attractive, enjoyable or unpleasant.”
His first response was to do something. “It’s the strongest impulse to try and fix things for your mother,” he says. “I always find it better to come up with a practical plan – that there’s something we can try. I wanted Mum to be assessed but not to be rebuffed, either with insensitive delivery of the truth or false reassurance that there was nothing wrong. But I also had the dilemma of deciding whether it was right to share my suspicions with my family. It’s always very difficult to know the correct time to do this with a patient, though deep down, most people know this is what’s wrong with them.”
He broached the matter with his father first. “We sort of simultaneously brought it up in conversation; I called it ‘mild cognitive impairment’ and emphasised the need to try to prevent deterioration,” says Garrard. “I also took this line with her, and she went along with everything I suggested. At some level she did ‘know’ – once, when I went to visit she took me to one side and asked, ‘Am I OK?’”
Sheila was eventually seen by a neurologist at the local hospital who correctly diagnosed Alzheimer’s disease and prescribed a drug called memantine. “I thought this was reasonable and it probably did enhance her cognitive abilities for a while,” says Garrard. “However, I also thought that she would benefit from donepezil. But the psychiatrist we consulted did not believe it would be beneficial.”
At the time, Garrard was working with a group from Oxford who had discovered that specific doses of B Vitamins slow down cognitive and brain scan progression in mild cognitive impairment, by reducing the level of a harmful amino acid called homocysteine. “My mother took these religiously for several years,” he says.
And so she “went on independently” for some time, walking, socialising and even playing tennis. It was only in the last couple of years that she needed significant help.
“Of course this was a difficult period for me, but it was harder for my sisters, who were convinced that I must be able to do something to stop the progression of the disease,” says Garrard. “I knew that everything possible was already being done, but it was still painful to have to explain this.”
Sheila always had a sense of needing to have someone with her, so there were never any concerns for her safety or whereabouts, recalls Garrard. His older sister in particular took on the brunt of helping Sheila with everyday care: shopping, cleaning, taking her to the hairdresser. “My father was devoted to Mum and saw looking after her as a duty that was his alone, even though he was physically infirm; his natural pig-headedness was not always an asset.”
Garrard found some of the existing dementia care “depressing”.
“I went with my mother to a couple of memory clinics and there didn’t seem to be a desire to get to know the patient, just to tick the box and prescribe the medicine. Looking back, I don’t think I did enough for my mum,” he says. “I don’t think I did enough for Dad either, that feeling being all the more acute given how much they both did for me when I was young.”
The family persuaded Mr Garrard senior to get some carers to visit the house, but two months later – in October 2021 – he died. “By this point, we knew Mum had to go to a care home,” says Garrard. “It may sound surprising, but I knew precious little about this world, certainly not in the area of West London where my parents lived.”
He describes residential care for dementia patients as “not great. In some care homes they are even cordoned off in a special area,” he says. “My sister and I visited one such establishment. And though we decided there was no way our mother would be moving there, I found it enlightening.
“One resident was a retired classics master who spoke Ancient Greek (and was surprised to hear me respond in kind). Another was a woman whose defective memory made her believe that anyone she met was a long-lost friend. I remember my sister being enchanted by both of them. Not all dementia patients are aggressive, and people tend to forget this.”
In the end, they found a wonderful, small care home, run by a former high-ranking nurse, who could “not do enough” for his patients.
“We decided that Mum would be overwhelmed by my father’s funeral, so she spent the day there,” says Garrard. “When we picked her up, she asked: ‘Can I come back here?’ Mum moved in and spent the last year of her life in a very good place.” Sheila died in July 2022.
Garrard says the experience with his own mother taught him much about how we should behave with dementia patients and their families. “Though it might sound incongruous, I think it is very important to incorporate an element of fun into consultations,” he says. “This is easy when dealing with people suffering from frontotemporal dementia, who can be irresistibly energetic and high spirited. For example, at my first meeting with one gentleman, he quoted a speech from his favourite film, and told me that I reminded him of Anthony Hopkins. Next time we met he bellowed out ‘Good afternoon, Anthony!’ … ‘That’ll be Sir Anthony to you’, I joked back.”
The personal approach is so important, he insists, and one of his ongoing professional concerns is to keep patients out of hospital. “An admission has an instant and deeply negative effect on a person’s wellbeing and cognition,” he says.
Garrard recently joined the Geller Commission, an initiative started by Laurence Geller, the businessman and philanthropist. “Our goal is to prevent hospital admissions, as well as insist on the vital improvement of early diagnosis of dementia,” he says. “The new drugs are at their early stages, and we don’t yet know if they can switch off the progression of dementia. But if they can, early diagnosis is key.”
While the medics are hoping for the drugs to improve, Garrard insists there’s plenty a person can do themselves to reduce their risk. “My usual advice is: think of something you enjoy doing, but would find challenging,” he says. “This includes intellectual engagement, though not necessarily puzzles. Physical exercise is really important. A Mediterranean diet, supplemented with B Vitamins: they are simple, harmless and inexpensive treatments.”
Garrard’s main prescription, however, is: “kindness, with a side-order of gentle humour”.
He adds: “As a young woman, my mother had worked as an actress, and over the years we developed a repertoire of mostly comic routines, which still entertained her, even in the final months of her life,” he says. “Nobody benefits from an atmosphere of doom and gloom.”
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