Nick Brake, a 61-year-old from Braunston in Rutland, has been managing young-onset Alzheimer’s disease since his diagnosis in early 2024. His journey began with subtle signs in 2020 when he struggled to recall a company logo from his previous business, followed by difficulties with spelling, memory, and conversation. After several years of initial reassurances from his GP, further tests confirmed his condition, placing him among more than 70,000 Britons living with Alzheimer’s.
Standard treatment options for Alzheimer’s available on the National Health Service (NHS) primarily involve symptom-relieving drugs such as donepezil and rivastigmine, which were developed in the 1990s. These medications act as cholinesterase inhibitors, boosting chemical signals in the brain but not addressing the underlying brain damage caused by the disease. Nick was prescribed donepezil but could not tolerate the highest dose due to its effect on slowing heart rate, a significant concern for him as a lifelong runner with a naturally low resting heartbeat.
Seeking additional options, Nick and his wife Nicky opted to pay privately for a newer drug, lecanemab (brand name Leqembi), which was formally approved for use in the UK by the Medicines and Healthcare products Regulatory Agency (MHRA) in August 2024 but has not been made available on the NHS. Lecanemab is designed to engage the brain’s immune system in clearing amyloid plaques, a sticky protein linked to Alzheimer’s. However, the National Institute for Health and Care Excellence (NICE) has rejected it for NHS use, citing that the drug’s benefits do not sufficiently outweigh its high cost, estimated around £80,000 per year, and potential risks.
Nick’s treatment began in early 2025 under the care of consultant neurologist Dr. Richard Perry at the Cleveland Clinic in London. Genetic testing showed he carries no copies of the APOE4 gene variant, which is associated with higher risk for both Alzheimer’s and severe side effects from lecanemab, including brain swelling and bleeding; patients with two copies of APOE4 are not permitted the drug in the UK. Nick experienced a severe reaction during his first infusion, marked by chills and fever, a common immune response reported in roughly one in four participants in clinical trials. Subsequent infusions have been better managed with pre-treatment medication.
Over the past several years, Nick has continued many activities such as running, playing tennis, and engaging in music, though he acknowledges a gradual cognitive decline. A PET scan earlier in 2025 showed a significant reduction in amyloid levels from approximately 90 to 22 centiloids, indicating the drug is effective in targeting amyloid deposits. However, experts caution that while lecanemab may slow disease progression modestly, all patients, including Nick, continue to experience deterioration.
Clinical trial data published in 2022 showed that over 18 months, patients on lecanemab exhibited a 27% slower decline compared to placebo, with an average difference of 0.45 points on an 18-point symptom scale. Some clinicians note that a larger difference is usually necessary to observe clear clinical effects. There is also ongoing debate among researchers about whether amyloid is the most appropriate therapeutic target, with some suggesting that tau protein or immune system dysfunction in brain cells may be more critical in driving symptoms.
Supporters of treatments like lecanemab argue that even modest slowing of decline can preserve independence longer and reduce care costs, while critics emphasize the high financial burden and potential side effects, which require regular monitoring including MRI scans. NICE has currently paused its final decision on NHS availability pending drug price negotiations, expected to conclude soon.
For Nick and his family, privately accessing lecanemab has provided a sense of control and hope, despite the challenges. Alongside medication, Nick has made lifestyle changes such as dietary improvements and brain training. His family remains focused on maximizing the time they have, balancing the realities of Alzheimer’s with ongoing efforts to maintain quality of life.