Lykke Vestergaard Kastbjerg, 42, and her father Niels, 73, are amongst a whole lot travelling to the UK for therapy.
Lykke Vestergaard Kastbjerg, 42, and her father Niels, 73, journey to the UK every month for Donanemab (Picture: Equipped)
As soon as a month, Lykke Vestergaard Kastbjerg, 42, and her father Niels, 73, journey from their houses in Denmark to London. They play brain-training video games collectively on the quick flight over the North Sea and search for good eating places to make every journey memorable. However the pair will not be on vacation. They’re visiting one of many world’s main cognitive well being clinics so Niels can obtain a dose of a breakthrough Alzheimer’s drug they hope will give him treasured further time earlier than the illness takes maintain. Every journey is a tightly-planned operation, Lykke explains. “We fly early sooner or later and have the MRI that afternoon, then I run right down to the clinic with the CD with the images. The subsequent day, he has the therapy within the morning and we fly house within the afternoon.”
Some journeys are even accomplished inside sooner or later after a 3am begin. They’ve made the journey seven instances to date and intend to proceed for a complete of as much as 18 months. Single mum Lykke provides: “Apart from my children, that is the one factor that issues for me proper now. It’s precedence primary.”
Lots of of sufferers are regarded as coming to the UK from overseas to entry two Alzheimer’s remedies – donanemab (the drug Niels is taking) and lecanemab. Each have been accredited to be used right here however their advantages have been judged “too small to justify the prices” of offering them on the NHS, to allow them to solely be accessed with a personal prescription. I met Lykke, Niels and Dr Emer MacSweeney, the neuroradiologist overseeing his therapy, throughout certainly one of their current visits.
The grandfather-of-six, who directed a serious catering firm for 42 years, was recognized with gentle Alzheimer’s illness in December 2023. Lykke’s mom Elsebeth is a former dementia care employee and seen indicators of short-term reminiscence loss at an early stage. “He would possibly inform us one thing from the information after which inform it once more half an hour later,” Lykke explains.
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Grandfather-of-six Niels, with daughter Lykke, was recognized with gentle Alzheimer’s in December 2023 (Picture: Equipped)
A while after Niels’s prognosis, Lykke attended a lecture by a girl who described how her mom misplaced her reminiscence and her behaviour modified because of Alzheimer’s. The speaker instructed how her mum would typically lay the desk with solely forks or plates positioned the wrong way up.
Lykke says: “It hit me onerous. Sometime this might be my future, to face in entrance of my father and possibly he received’t recognise me, or he’ll shout at me as a result of he received’t know who I’m. So I assumed, ‘I’ve to do one thing’.”
Lecanemab and donanemab have been hailed as revolutionary surprise medication in 2022 and 2023, after changing into the primary remedies confirmed to each sluggish development of signs and deal with the underlying causes of Alzheimer’s illness. However some specialists have questioned whether or not their results have been nice sufficient to make a major distinction to sufferers’ lives, and raised issues about uncommon, however severe, unwanted effects.
Each have been licensed by the UK’s medicines regulator, which decides whether or not medication are protected and efficient, however rejected for NHS use. Equally, lecanemab obtained advertising and marketing authorisation from the European Medicines Affiliation in April 2025, however the Danish Medicines Council determined in December to not suggest it to be used in public hospitals. Donanemab has additionally obtained the inexperienced gentle from the EMA and is underneath analysis by the council.
When Lykke researched these therapy choices, she was devastated. A drug existed that would sluggish her father’s illness however he couldn’t entry it. She says: “When you’ve somebody with Alzheimer’s, each week counts. You don’t have time to attend. I began my very own warfare in opposition to the Danish system. There may be nothing, no assist for him. You may get the prognosis however there’s nothing to do.”
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Lyyke regarded into personal clinics together with Re:Cognition Well being, an award-winning mind and thoughts clinic that specialises within the prognosis, therapy and care of cognitive impairments and psychological well being circumstances. It was based in London in 2011 by Dr MacSweeney and now has 10 places throughout the UK and USA.
Re:Cognition Well being is the main centre in Europe for delivering lecanemab and donanemab, and sees sufferers who journey from greater than 20 nations to entry the medication. After contemplating a variety of clinics and talking to Dr MacSweeney, the household determined Niels would fly to London for normal doses of donanemab. They’d a intestine feeling impressed by the professional’s clear ardour for her work, Lykke remembers.
This newspaper revealed in January 2025 that the clinic had change into the primary personal centre in Europe to roll out donanemab, a second Dr MacSweeney described as “a major milestone within the battle in opposition to Alzheimers”. A number of months later, she remembers it as “probably the most momentous occasions in my profession”.
Niels visiting Re:Cognition Well being, the main centre in Europe for delivering donanemab (Picture: Equipped)
Hilary Evans-Newton, chief government of Alzheimer’s Analysis UK (Picture: Alzheimer's Analysis UK)
So, is it working? “We’re not noticing something getting worse and that’s a plus, but in addition what we anticipated,” Lykke says. “To start with, he additionally turned extra lively, my mum stated. In the mean time she thinks it’s steady. It’s not getting higher, however that’s not what we anticipated – you’ll be able to’t construct up what has been misplaced. I’m not dwelling with him however I nonetheless assume there are small enhancements. We’re fortunate that he doesn’t have any unwanted effects.”
Lykke, who lives close to Herning in central Denmark together with her two teenage daughters – Mirah and Cilia – works in advertising and marketing and breeds Norwegian forest cats. She admits that arranging all thistravel and complicated medical care has been gruelling.
Dementia has turned her life the wrong way up, however she has maintained a easy mantra: “We’re going to do it, a method or one other.”
Lykke started posting about her expertise on social media and created a Fb web page to share info with others who’re in the identical place. “I didn’t know something about it earlier than and now we have to know every part,” the devoted daughter says.
‘If I needed to promote my very own home [to fund treatment] I’d do it in a heartbeat,’ says Lykke (Picture: Equipped)
Niels is masking the price of his therapy, however she provides: “It’s my dad’s life, it doesn’t have a value for me. If I needed to promote my very own home to do it, I’d do it in a heartbeat. He has all the time been there for us.”
For now, Niels’s information of sports activities and politics stays sharp. Lykke smiles: “I’m simply hoping that it’ll keep this manner. If he stays as he’s now, then he has his allure, humour, kindness, sweetness. Possibly he doesn’t bear in mind the information typically or he asks a query thrice or tells the identical tales, however for me, that’s nonetheless my dad. So long as his persona is there, that’s absolutely the aim for me.”
If the drug doesn’t work, Lykke provides, then not less than they loved just a few particular dinners in London. “We make it high quality time. It’s time I wouldn’t have had with him if it wasn’t for these journeys.”
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