by When he hears the comment, “there’s nothing you can do for someone with Alzheimer’s”, Professor Peter Garrard is frustrated. “I immediately think, ‘keep those people away from my patients’,” he says. “I aim to treat someone with dementia with dignity and respect. It is not helpful to assume that all is lost and rush straight to the final stages of the disease.”
He was not always a scientist: his first degree was in Classics at Oxford. “But the philosophy of mind and the problems of consciousness interested me,” he says. “I’m also very interested in personal identity. What makes ‘me’ who I am? It’s one of the first questions we ask ourselves when we’re young.”
These questions led to medicine and then neurology, and he is now a professor at St George’s hospital in London, specializing in neurodegenerative dementia, cognitive disorders, progressive language disorders, early-onset dementia and frontotemporal dementia.
After making a diagnosis, Garrard, 63, finds clues in his patients’ use of language. “They start using less complicated words and describe things in a roundabout way,” he says. “One of the first questions I ask when a new patient comes in is: ‘how did you get here today?’ If they answer: ‘I came to the big thing’ [instead of the bus] or ‘I got to 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 was always well read, but her language was deteriorating and she was using simpler words. Everything would be ‘nice’ or ‘bad’ rather than attractive, pleasant or unpleasant.”
His first response was no do something. “The strongest motivation is to try to fix things for your mother,” he says. “It’s always better to come up with a practical plan – that there’s something we can try. I wanted Mom to be assessed but not repulsed, with an insensitive delivery of the truth or a false assurance that nothing was wrong. But I also had the dilemma of deciding whether it was right to share my suspicions with my family. It is always very difficult to know the right time to do this with a patient, although deep down, most people know that this is what is wrong with them.”
He discussed the situation with his father first. “We brought it up in conversation at the same time; I called it ‘mild cognitive impairment’ and emphasized the need to try to prevent deterioration,” says Garrard. “I took this line with her too, and she went along with everything I suggested. At some level she ‘knew’ – once, when I went to visit she took me to one side and asked, ‘Am I OK?'”
A neurologist at the local hospital eventually saw Sheila and correctly diagnosed Alzheimer’s disease and prescribed a drug called memantine. “I thought this was reasonable and probably boosted her cognitive ability for a while,” says Garrard. “However, I also thought she would benefit from donepezil. But the psychiatrist we consulted didn’t believe it would be beneficial.”
At the time, Garrard was working with a group from Oxford who found that specific doses of B Vitamins slow the progression of cognitive and brain scans 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 independently” for a while, walking, socializing and even playing tennis. It was only in the last few years that she needed significant help.
“Obviously this was a difficult time 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 everything possible was already being done, but it was still painful to explain this.”
Sheila always had the sense that she needed someone to be with her, so she never worried about her safety or whereabouts, Garrard recalls. It was especially his older sister’s duty to help Sheila with daily chores: shopping, cleaning, taking her to the hairdresser. “My father was devoted to Mum and saw it as his duty to take care of her, even though he was physically weak; His natural pig rebellion was not always an asset.”
Part of Garrard’s existing dementia care was “depression”.
“I went with my mother to a couple of memory clinics and they seemed to not want 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 mother,” he says. “I don’t think I did enough for Dad either, that feeling was made even worse considering how much they both did for me when I was young.”
The family convinced the senior Mr Garrard to get some carers to visit the home, but two months later – in October 2021 – he died. “By this time, we knew Mum needed to go to a care home,” says Garrard. “It may come as a surprise, but I knew very little about this world, certainly not in the West London area where my parents lived.”
He describes residential care for dementia patients as “not great. In some care homes they are even placed in a special area,” he says. “My sister and I visited one such establishment. And even though we decided there was no way our mother would be moving there, I got a glimpse of it.
“One resident was a retired classics master who spoke Ancient Greek (and I was surprised to hear him respond in kind). Another was a woman whose faulty memory convinced her that the person 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 an ex-nurse, who couldn’t do “enough” for his patients.
“We decided that Mum would be overwhelmed at 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 that the experience with his own mother taught him a lot about how we should behave with dementia patients and their families. “While it may sound counterintuitive, I think it’s very important to incorporate an element of fun into consultations,” he says. “This is easy when we are dealing with people suffering from frontotemporal dementia, people who can be energetic and high-spirited. For example, at my first meeting with one gentleman, he quoted a speech from his favorite movie, and told me that I reminded him of Anthony Hopkins. The next time we met him he said ‘Good evening, Anthony!’ … ‘That will be Sir Anthony to you’, I joked back.”
The personal approach is so important, he insists, and one of his ongoing professional concerns is keeping patients out of hospital. “Admission has an immediate and profoundly negative impact on a person’s well-being and cognition,” he says.
Garrard recently joined the Geller Commission, an initiative started by businessman and philanthropist Laurence Geller. “Our goal is to prevent hospital admissions, and claim a vital improvement in the early diagnosis of dementia,” he says. “The new drugs are in their early stages, and we don’t yet know if they can halt the progression of dementia. But if they can, early diagnosis is key.”
Although doctors are hoping that the drugs will improve, Garrard insists that there is plenty that a person can do themselves to reduce their risk. “My usual advice is: think of something you enjoy doing, but would challenge you,” he says. “This includes intellectual engagement, although not necessarily puzzles. Physical exercise is really important. Mediterranean diet, supplemented with B Vitamins: simple, harmless and cheap treatments.”
Garrard’s main recipe, however, is: “relativity, with a side order of gentle humour”.
He says: “As a young woman, my mother worked as an actress, and over the years we developed a repertoire of mostly comic routines, which still entertained her, even in the last months of her life,” he says. . “No one benefits from an atmosphere of doom and gloom.”
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