A wife whose husband will not be eligible for new Alzheimer’s drugs has implored health leaders to ensure that others like him will be able to access treatments.
New disease-modifying Alzheimer’s drugs work best when they are given to patients in the early stages of disease.
The drug has been licensed for use in the UK but rejected by the NHS spending watchdog, the National Institute for Health and Care Excellence (Nice).
Elaine Windass, whose husband, Brian, was diagnosed with Alzheimer’s disease is 2022, said that she hoped future generations would benefit from the treatments.
Mr Windass, 76, began to show symptoms in 2021. He was diagnosed in August 2022.
The couple, who have been married for 50 years, think that it will be “too late” for the drugs to benefit Mr Windass but they hope they will be available on the NHS for future generations.
Mr and Mrs Windass, from Hull, have two sons and two grandchildren and said that they hope the drugs would be available on the NHS should their children and grandchildren need treatment in the future.
“It’s no use to anyone like Brian now because he was diagnosed two years ago,” Mrs Windass told the PA news agency.
“So, really, by the time the NHS decide to give it out, it will be too late for people like Brian but it would hep future generations.
“Brian and I now feel that its too late for us. Brian’s father had Alzheimer’s, Brian has it, and we worry about our two sons and and grandchildren as well.
“I just think that people should be able to get it and not have to pay privately.”
On Mr Windass’ condition, she added: “He is aware of everything that is going on, he has not changed in the past two years since the diagnosis.”
She said that Mr Windass, who worked as a joiner before he retired, did a lot of DIY and had a busy social life before his diagnosis.
“He doesn’t do any do-it-yourself now because he’s not confident,” she said.
“I make sure we go out a lot, when we’re in a group he doesn’t speak much. He’s very quiet. He gets a bit anxious.
“I drive now to most places – Brian can still drive but prefers me to drive now.”
Mr Windass told PA: “I just take one day at a time.”
Mrs Windass, a former GP surgery receptionist who also works on a dementia unit, added: “Attending Alzheimer’s Society’s memory cafe in Hull has been a godsend – simply talking to others who are in the same boat really helps.”
Mr Windass added: “We go to this meeting once a week and we see lots of people there who are in the same boat as I am. We just talk about different things, how they am, how I am.”
Professor Fiona Carragher, chief policy and research officer at Alzheimer’s Society, said: “Disease-modifying therapies like donanemab and lecanemab offer a new horizon of hope in the fight against dementia.
“MHRA’s approval of donanemab marks another milestone in this journey, but it comes alongside a draft Nice decision not to recommend donanemab for use on the NHS. While this is disheartening, we respect the decision of the regulator.
“In other diseases like cancer, treatments have become more effective, safer and cheaper over time and we hope to see similar progress in dementia.
“With around 20 Alzheimer’s disease drugs in late-stage clinical trials, more drugs will be submitted for approval within the next few years.
“New treatments are an important catalyst for change, but they are only one piece of the puzzle. While preparing for the future, we must not lose sight of the million people living with dementia in the UK today – a third of whom don’t have a diagnosis.
“We need to see significant Government investment to bring about radical change so that everyone with dementia in the UK can get an early and accurate diagnosis.
“Without this, people won’t be able to access existing treatments and interventions to help manage their symptoms today or be ready for the disease slowing treatments of tomorrow.”
– For more information visit alzheimers.org.uk/checklist or call the Alzheimer’s Society’s dementia support line on 0333 150 3456.
