“I’m going the extra mile for dementia research. Now it’s your turn, Prime Minister”
Captain Rick Taylor, a once avid adventurer who served in the British Army, died in 2019 after living with dementia for 17 years. His grandson, Louis Alexander, made a promise at his funeral to never give up on the global search for a cure.
Louis’s latest fundraising mission will see him take on seven marathons in the most remote corners of all seven continents. With four under his belt he is over halfway, however he has no plans of slowing down with his sights set on the Amazon rainforest later this month.
But Louis isn’t just looking for support from the public, he wants to see action from the government too.
Ahead of his departure, and during party conference season, Louis has called on the Prime Minister to make dementia a priority. This includes investing in diagnostics to improve the speed and accuracy of dementia diagnosis in the UK.
You can read his letter below.
Dear Prime Minister,
I am writing to you on World Alzheimer’s Day with an urgent plea for your Government to commit to a £16 million investment into improving diagnostics for dementia.
The NHS’s current ability to diagnose dementia patients early and accurately is simply not good enough – one in three people living with dementia in England never receive a formal diagnosis. With recent news of life-changing treatments, lecanemab and donanemab, potentially becoming available in the UK next year, thousands of people will be unable to access these drugs because of inadequate diagnoses. That is why I am calling on your Government to invest now.
Lumbar punctures are a fast, accurate and cost-effective way to detect signs of dementia. A £16 million investment would boost the number of lumbar punctures from 2,000 a year to 20,000; helping the NHS pay for infrastructure, equipment and specialist training. The annual cost of social and informal care in the UK is currently £22.7 billion. With one in four hospital beds occupied by a dementia patient, this investment presents a clear and long-term economic benefit.
My grandfather, Captain Rick Taylor, is sadly one of the many heartbreaking stories of dementia. An explorer, adventurer and British Army serviceman of 38 years, my family was destroyed when he was diagnosed with dementia at only 58 years old. From ages two to 19, I watched his 17-year battle against this cruel illness. Sadly, my memories are not of him sharing his laughter, life stories or wisdom. They are of him losing his memory, independence and life.
On 1st September 2019, at Chatsworth Grange Care Home, I shared tears with my family as we held his hands during his final moments. I remember leaving his care home room for the last time – where he spent the last two years unable to walk or talk – and realising that my Grandad was one of numerous patients in the same position. At his funeral, I had the proud responsibility of delivering his eulogy. Here, I made a promise to fight against dementia until a cure is found.
From climbing mountains like Kilimanjaro, swimming feared waters such as the Alcatraz Crossing to running 17 marathons in 17 consecutive days in honour of the 17 years my grandfather suffered, I have dedicated my life to this promise – and raised tens of thousands for Alzheimer’s Research UK. I will do everything I can to raise vital funds and awareness for dementia.
At the time of writing, I am on a journey to run seven marathons in the most remote corners of the seven continents of the world. A global challenge to highlight the global impact of this terrible disease. I have run through deserts in Africa and Asia, Alaska and the Australian Outback, but for the final three continents I will run through the most extreme environments yet: the Amazon Jungle, Arctic Circle and Antarctica.
I will run in temperatures as low as -25°C and face great adversity and pain, but this will never compare to the torment and suffering felt by the individuals, families, communities, caregivers and researchers fighting the daily battle against dementia. I cannot change the environment I will run the final three marathons in – that is for nature to decide. But you, as our elected Prime Minister, can change the environment for every person battling with and against the biggest killer in the UK.
It is in your power to offer hope to individuals diagnosed with dementia, rather than a death sentence.
Prime Minister, on this World Alzheimer’s Day, there has never been a more urgent time for action. I made a promise to fight against dementia until a cure is found. Today, I implore you to do the same and make this crucial investment.
I will take a physical version of this letter to the Amazon Jungle in October, Arctic Circle in November and Antarctica in December. I then look forward to delivering it to you in person upon my return.
Alzheimer’s Research UK is always looking for more people across the UK to campaign with us for a cure. If you’d like to join a network of over 7,000 active campaigners, then sign up today.