Lykke Vestergaard Kastbjerg, 42, and her father Niels, 73, travel to the UK each month for Donanemab (Image: Supplied)
Once a month, Lykke Vestergaard Kastbjerg, 42, and her father Niels, 73, travel from their homes in Denmark to London. They play brain-training games together on the short flight over the North Sea and look for nice restaurants to make each trip memorable. But the pair are not on holiday. They are visiting one of the world’s leading cognitive health clinics so Niels can receive a dose of a breakthrough Alzheimer’s drug they hope will give him precious extra time before the disease takes hold. Each trip is a tightly-planned operation, Lykke explains. “We fly early one day and have the MRI that afternoon, then I run down to the clinic with the CD with the pictures. The next day, he has the treatment in the morning and we fly home in the afternoon.”
Some trips are even completed within one day after a 3am start. They have made the journey seven times so far and intend to continue for a total of up to 18 months. Single mum Lykke adds: “Besides my kids, this is the only thing that matters for me right now. It’s priority number one.”
Hundreds of patients are thought to be coming to the UK from abroad to access two Alzheimer’s treatments – donanemab (the drug Niels is taking) and lecanemab. Both have been approved for use here but their benefits were judged “too small to justify the costs” of providing them on the NHS, so they can only be accessed with a private prescription. I met Lykke, Niels and Dr Emer MacSweeney, the neuroradiologist overseeing his treatment, during one of their recent visits.
The grandfather-of-six, who directed a major catering company for 42 years, was diagnosed with mild Alzheimer’s disease in December 2023. Lykke’s mother Elsebeth is a former dementia care worker and noticed signs of short-term memory loss at an early stage. “He might tell us something from the news and then tell it again half an hour later,” Lykke explains.
Grandfather-of-six Niels, with daughter Lykke, was diagnosed with mild Alzheimer’s in December 2023 (Image: Supplied)
Some time after Niels’s diagnosis, Lykke attended a lecture by a woman who described how her mother lost her memory and her behaviour changed due to Alzheimer’s. The speaker told how her mum would sometimes lay the table with only forks or plates placed upside down.
Lykke says: “It hit me hard. Someday this will be my future, to stand in front of my father and maybe he won’t recognise me, or he’ll shout at me because he won’t know who I am. So I thought, ‘I have to do something’.”
Lecanemab and donanemab were hailed as revolutionary wonder drugs in 2022 and 2023, after becoming the first treatments proven to both slow progression of symptoms and tackle the underlying causes of Alzheimer’s disease. But some experts have questioned whether their effects were great enough to make a significant difference to patients’ lives, and raised concerns about rare, but serious, side effects.
Both have been licensed by the UK’s medicines regulator, which decides whether drugs are safe and effective, but rejected for NHS use. Similarly, lecanemab received marketing authorisation from the European Medicines Association in April 2025, but the Danish Medicines Council decided in December not to recommend it for use in public hospitals. Donanemab has also received the green light from the EMA and is under evaluation by the council.
When Lykke researched these treatment options, she was devastated. A drug existed that could slow her father’s disease but he could not access it. She says: “When you have someone with Alzheimer’s, every week counts. You don’t have time to wait. I started my own war against the Danish system. There is nothing, no help for him. You can get the diagnosis but there is nothing to do.”
Lyyke looked into private clinics including Re:Cognition Health, an award-winning brain and mind clinic that specialises in the diagnosis, treatment and care of cognitive impairments and mental health conditions. It was founded in London in 2011 by Dr MacSweeney and now has 10 locations across the UK and USA.
Re:Cognition Health is the leading centre in Europe for delivering lecanemab and donanemab, and sees patients who travel from more than 20 countries to access the drugs. After considering a range of clinics and speaking to Dr MacSweeney, the family decided Niels would fly to London for regular doses of donanemab. They had a gut feeling inspired by the expert’s clear passion for her work, Lykke remembers.
Niels visiting Re:Cognition Health, the leading centre in Europe for delivering donanemab (Image: Supplied)
Government must act fast on dementia drugs trial
Hilary Evans-Newton, chief executive of Alzheimer’s Research UK (Image: Alzheimer's Research UK)
By Hilary Evans-Newton, Chief Executive of Alzheimer’s Research UK
“For a decade, we’ve been calling on the government to get ready for new treatments in dementia. Science is moving fast, but people with dementia are being left behind.
The new Alzheimer’s drugs like donanemab and lecanemab are approved in the UK but considered not to be cost effective, so they aren’t prescribed on the NHS. These two treatments are not a cure – but they can slow down the progress of the disease and may help people stay independent for longer.
As Baroness Casey said last week, if she had Alzheimer’s, she’d want the chance to benefit from these treatments. Millions of families feel the same.
But our NHS is not ready for these new medicines. That’s why we support Baroness Casey’s call on the government to back a trial that is ready to test these medicines now using funding that already exists. It would give around 100 people access to these new drugs while also helping the NHS learn what the system needs to identify people who will benefit from the treatments and safely deliver them.
The pilot doesn’t require any new buildings, expensive technology, or major investment. It plugs into an established study design and involves leading UK experts. It is exactly the kind of move that would show patients, families, and clinicians that the government is serious about dementia.
Right now, everything is in place except the political decision to get going. The science is ready. The money is available. People with dementia don’t have time to waste. It’s time to act.”
This newspaper revealed in January 2025 that the clinic had become the first private centre in Europe to roll out donanemab, a moment Dr MacSweeney described as “a significant milestone in the fight against Alzheimers”. Several months later, she remembers it as “one of the most momentous events in my career”.
She explains: “This is a treatment which is designed to remove the toxic amyloid protein in the brain which occurs in Alzheimer’s disease. It accumulates over about 20 years and then it reaches a level where it starts to cause symptoms. These are the symptoms which Niels experienced – problems with short-term memory, sometimes concentration, decision-making, sometimes problems with getting lost in a familiar environment,calculations or word-finding. Niels has got very mild symptoms so he is fortunately eligible.”
The drug is administered as an intravenous infusion over around 30 minutes. It crosses the blood-brain barrier, then acts to remove amyloid.
“Bringing the amyloid protein down also has a very positive effect on this other protein called tau, also helping to decrease theharmful effect,” Dr MacSweeney adds. “And then we have a whole new lease of life.”
Niels can take donanemab for a maximum of 18 months. He has regular MRI scans to check for signs of brain swelling or bleeding, a rare but serious side effect observed in clinical trials. Results from a major trial involving more than 1,100 people found the drug slowed the progression of dementia by 35%, equivalent to around a five-month delay in cognitive decline for patients with the early-stage disease.
The first three months of treatment cost around £15,000, plus flight and hotel costs, Lykke says. Elsebeth was also at her husband’s side when he received the first infusion on August 19.
Donanemab is one of two drugs that slows both the symptoms and underlying causes of Alzheimer’s (Image: Supplied)
Before and after scans showing cleared brain deposits (seen in green, yellow and red) (Image: Supplied)
So, is it working? “We’re not noticing anything getting worse and that’s a plus, but also what we expected,” Lykke says. “In the beginning, he also became more active, my mum said. At the moment she thinks it’s stable. It’s not getting better, but that’s not what we expected – you can’t build up what has been lost. I’m not living with him but I still think there are small improvements. We’re lucky that he doesn’t have any side effects.”
Lykke, who lives near Herning in central Denmark with her two teenage daughters – Mirah and Cilia – works in marketing and breeds Norwegian forest cats. She admits that arranging all thistravel and complex medical care has been gruelling.
Dementia has turned her life upside down, but she has maintained a simple mantra: “We’re going to do it, one way or another.”
Lykke began posting about her experience on social media and created a Facebook page to share information with others who are in the same position. “I didn’t know anything about it before and now we need to know everything,” the devoted daughter says.
‘If I had to sell my own house [to fund treatment] I would do it in a heartbeat,’ says Lykke (Image: Supplied)
Niels is covering the cost of his treatment, but she adds: “It’s my dad’s life, it doesn’t have a price for me. If I had to sell my own house to do it, I would do it in a heartbeat. He has always been there for us.”
For now, Niels’s knowledge of sports and politics remains sharp. Lykke smiles: “I’m just hoping that it will stay this way. If he stays as he is now, then he has his charm, humour, kindness, sweetness. Maybe he doesn’t remember the news sometimes or he asks a question three times or tells the same stories, but for me, that’s still my dad. As long as his personality is there, that’s the absolute goal for me.”
If the drug doesn’t work, Lykke adds, then at least they enjoyed a few special dinners in London. “We make it quality time. It’s time I wouldn’t have had with him if it wasn’t for these trips.”
This story originally appeared on Express.co.uk
