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What the neuropsychologist did to slow her mother's dementia
Catherine Loveday, a professor of neuropsychology at the University of Westminster and author of The Secret World of the Brain, has dedicated her career to the study of memory. So when she suspected early signs of Alzheimer's in her 70-year-old mother, Scilla, she was well equipped to help.
After tests in 2011 showed 'targeted memory loss' in keeping with the disease, Loveday says, 'it was so early in the progression I knew there were evidence-based steps we could take to slow it. I was in the most amazing position to have this knowledge and experience.'
When Scilla was eventually diagnosed with mild Alzheimer's after a brain scan in 2017, she was 'upset but pragmatic', Loveday says. Now 85, Scilla's illness has progressed, but Loveday, 56, believes she still enjoys a better quality of life as a result of those early steps. 'In parallel, in my professional life, I have seen people whose dementia has progressed much quicker.'
Their journey has proved 'hugely bonding', Loveday says, enabling a more open relationship with Scilla, who was herself an NHS psychiatrist. 'Her vulnerability was something I never saw. She's allowed me to feel I can be close to her and protect her.'
Loveday, who lives in London with her sons, aged 23 and 18, and her husband, Jeff, 52, a composer, has now recorded a podcast, Mempathy, 'to show understanding the science can lead to a better quality of life and potentially even slow progression'.
She has also developed Memory Matters, a four-week course for the charity Age UK with tips and activities to help anyone worried about their memory. Helping other families in their situation is her way of coping, she says. 'What I'm doing in my working life has come together with what I'm doing with my mum. My work has taught me that there are science-backed steps we can all take to improve our brain health — not only through more exercise, better diet and improved sleep, but by keeping the stress and anxiety that accompany memory loss under control, because these increase levels of inflammatory markers in the body that in turn may accelerate dementia.'
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While there can be a 'benign forgetfulness' in the elderly, by 2011 recently widowed Scilla was often repeating herself. She ran a choir at her local church but was 'getting muddled', Loveday says, and got lost on a regular walk, which 'made her scared'.
Cambridge-educated Scilla had always been 'independent and resilient', Loveday, one of three sisters, says. Had she voiced concerns about Scilla's memory to her GP, Scilla may have been offered a mini-mental state examination, a ten-minute questionnaire used by doctors to assess cognitive impairment.
But as a highly intelligent woman, she would have passed 'with flying colours', Loveday says. 'Mum would not have been picked up by the GP for another six or seven years.'
Instead, she suggested her mum complete a more detailed hour-long 'battery' of tests used to test for dementia in NHS memory clinics, 'put together by a colleague with my input'.
Loveday's intention was to assess 'a specific pattern of strengths and weaknesses'. When she explained this to her mum, she says Scilla 'was nervous but trusted me'.
Scilla did well with some tasks. 'If I gave her a list of words, she could read them back,' Loveday says. Yet when she gave Scilla a list of words, read her a story and asked her to recall those words half an hour later, 'she was performing worse than 99.9 per cent of people'.
Scilla's prefrontal cortex — the area of the brain responsible for problem-solving — was working well but her hippocampus, which deals with memory and is usually the first affected by Alzheimer's, was not. 'What I was seeing was the early signature of Alzheimer's disease,' Loveday says. Her fear at her findings was tinged with 'relief' that 'we could do something about it'.
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She gently told her mother 'a specific memory score was down in her test, which might explain why she was having difficulty in day-to-day life'. She was careful not to mention the disease by name at first, but when Scilla took the same test 18 months later her scores suggested 'a progressive condition like Alzheimer's'. After a subsequent hospital assessment in 2013 Scilla was diagnosed with mild cognitive impairment — a decline in cognitive function, for which there is no medical treatment, and from which, according to the NHS, 10-15 per cent of sufferers will develop dementia each year. Yet awareness of her condition empowered mother and daughter. 'It's felt like a shared project,' Loveday says.
'The measures we took have slowed decline but her Alzheimer's obviously continues to progress. Mum now has limited access to her past memories, but the work we did means we know exactly what makes her feel happy and we put that into practice every day. Last time I was with her, I asked, 'How do you feel?' and she said, 'Relaxed and at peace,' and I don't think we can ask for more. We were able to really make a difference.' Here's how.
Scilla immediately started writing a journal of everything she could remember doing that day before bed. She would read what she'd written the previous evening before writing the next entry. By leaving 24-hour gaps between reading the information again she was practising 'spaced repetition', Loveday says, a learning technique that improves memory by reviewing information at intervals. For Scilla, who wrote her diary for eight years until her memory became too weak, it was 'transformational', Loveday says.
Scilla's social life needed to be adapted. 'Book club was not working, because she couldn't remember what she was reading,' Loveday says, 'but going for a walk with people, playing online Scrabble or going for a cup of tea were good.' Scilla still sees friends at least once a week. Maintaining friendships is key to healthy cognitive function, Loveday says, because they can lower stress and so reduce inflammation in the brain that can be a precursor to Alzheimer's and is 'known to impact on progression'.
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Scilla and Loveday labelled the contents of cupboards so Scilla didn't forget where food was. Loveday bought her mum a dementia clock with the time and date in big letters and hung a white memory board with a pen in the kitchen. 'Each day she would make a note of things she had to remember to do. We made it a habit.' Loveday taught Scilla how to use Google Maps on her smartphone. Just knowing it was there 'made her more relaxed', she says. 'One of the worst things you can do when you're lost is panic.' She also started tracking her mum on iPhone's Find My app, 'so if she was stuck we could help'.
Scilla's early memories were strong, which is 'typical' in early Alzheimer's, Loveday says. Sparking conversation about them with questions — or 'cues' — can help preserve identity. Recalling her 'scratchy' school uniform, for example, brought up stories about Scilla's schooling. Another good cue is music. 'I know from my research if you ask people to give their eight favourite songs, often one or two will prompt memories about a specific moment that was transitional or important in terms of who you became,' Loveday says. 'Nostalgic conversations are powerful social connectors.'
Once a keen squash player, Scilla walked every day until Covid, when it was harder to get out. 'She now has limited mobility, which is partly a reflection of the progression of the disease and partly because she wasn't able to keep up the same level of exercise.' There is evidence that exercise improves brain-derived neurotrophic factor, a protein that supports cognitive function, Loveday says, and simply leaving the house can help because 'navigating stimulates the hippocampus. From an evolutionary point of view, the memory systems switch on because you need to find your way back to safety.'
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Scilla increased her intake of foods that contain flavanols and polyphenols — plant compounds 'which are probably supportive to brain health', Loveday says — such as berries and dark green vegetables and cut out sugary snacks to avoid glucose spikes, which are shown to reduce cognitive function. 'There is a comorbidity with dementia and diabetes.' She started taking fish oil and vitamin B supplements because there was 'some evidence they might support brain function' and Loveday encouraged her mum to keep to a stricter bedtime routine. While Alzheimer's sufferers often struggle to sleep, some evidence suggests improved sleep quality can improve progression.
Loveday and her sisters ascertained their mum's wishes for her future care early on. This can be upsetting and 'we had to be gentle', Loveday says. She learnt that Scilla's main priority was remaining in her home in Devon, which she does, with the help of a carer since 2020. 'She was clear she didn't want any of her daughters to be giving up their life for her and it's helpful to have had that conversation.'
Anyone struggling with recall should have their eyesight and hearing tested regularly — the NHS recommends annual hearing tests and eyesight tests every two years for those over 60 — because 'the richness of our sensory world impacts on memory', Loveday says. Although Scilla's hearing is 'brilliant' there is evidence that hearing impairment is linked with cognitive decline. 'We don't 100 per cent know why but it seems to be about social connection. If you can get hearing aids that reduces that.'
Mempathy is available on Spotify
