A couple of weeks ago, I found myself in Alexandra Palace at a session called Singing for the Brain, hosted by wonderful volunteers from the Alzheimer's Society.
Rather than a clinic or a care home, it was a room full of people living with dementia, alongside their husbands, wives, carers and loved ones, meeting every week simply to sing together. Some people held hands. Some people danced. Absolutely everyone sang. When David the pianist struck up We'll Meet Again and You Are My Sunshine, there were smiles, laughter, tears (mine!) and, for a moment, a sense of joy and community that cut through everything else.
It was one of the most uplifting experiences I have had in recent months. Not because it denied the reality of dementia; everyone in that room knows how hard it is and would tell you in no uncertain terms the toll it takes; but because it was rooted in hope. Hope that life and joy do not end at diagnosis. Hope that the connection between people can endure despite the spread of the disease.
It struck me that that same spirit of hope is woefully lacking from how we treat and view finding treatments and cures for dementia in this country today.
Everyone experiences dementia differently. Nowhere does the fault line in our health and care system play out more starkly. Dementia and Alzheimer's disease are too often treated as an inevitable part of ageing and a social care problem, rather than as a collection of serious neurological diseases that demand the same clinical focus, urgency and innovation as cancer or heart disease.
The scale of the challenge alone should be enough of a wakeup call. Dementia and Alzheimer's Disease are the leading cause of death in the UK. Half of the population say it is the condition they fear most. And it's well known this challenge is only going to grow. Thank God, we are all living longer, but that also means more of us will live with dementia, or care for someone who does. There could be 1.4 million of us living with dementia by 2040.
Yet despite this predictability, I have not seen a system preparing to meet this challenge. Instead, I have encountered pessimism and despair. A sense that dementia is unavoidable. That new drugs offer only 'small benefits' and are too difficult to deliver. That major breakthroughs are decades away, so why bother preparing the NHS to use them.
This is not our usual mindset when it comes to science. Our health service, and indeed our country, is usually energised by scientific progress. We research, pilot new treatments, test boundaries and prepare for what's coming. At best, this looks like defeatism. At worst, it looks like a way of keeping dementia, and the inevitable costs of treatment, at arm's length from the NHS.
The consequences of this pessimism falls on families. People like the carer I met in Newcastle, who told me that when his wife was diagnosed with dementia he received two leaflets; one on benefits and one on council tax reduction. He did not want to be on benefits. He wanted to know how to cope. Families are left to navigate a fragmented system, often only getting help when they reach crisis point.
It does not have to be this way. There is real reason for optimism if we choose to act. New drugs which can delay the progress of Alzheimer's for months for those in the early stages of the disease have been licensed for use in the UK, and there are hundreds of promising drugs in the pipeline. What's needed now is momentum and willingness to trial and roll them out in the NHS.
What I've recommended to the government is an incredibly modest ask in the grand scheme of this challenge. £6million through the Dame Barbara Windsor Dementia Goals Programme should be used to begin trials of these newly licensed Alzheimer's drugs in England.
Running these pilots would mark an important shift, treating dementia as a clinical condition that the NHS actively manages while getting the evidence we need to prepare for wider rollout and the next wave of drugs. A move from despair to hope.
I've also recommended the government move more quickly on bold national standards such as an 18‑week target for a dementia diagnosis and referral to treatment, and appointing a new Dementia Tsar, to spearhead this work, and to work tirelessly on prevention, treatment and care.
When I think back to Singing for the Brain, a room filled with people living with dementia and the people who love them, I don't remember despair. I remember laughter, hands held, voices raised together and a quiet refusal to give up on joy. Proof that life, connection and hope do not disappear at diagnosis. If we can match the hope I saw in that room in our national response to dementia, we can build a system with the same resolve shown by those fighting this disease.