January, for me, started the morning after Hogmanay. At midnight when the bells rang out, I’d already been asleep for hours. I needed to be up in the morning to drive two hours to visit my dad, who lives alone at the age of 95 in a small house in a seaside town on the west coast of Scotland.

Profits are made from clicks on stories that toy with family carers’ distress

On my visits I cook him lunch, eat with him, and write a note in the big folder that the morning and evening carers use to record their visits. I’ve lost count of the different signatures on the pages. Male and female, young and old. They come on foot or in their cars and in one case, a taxi. My dad is always telling those lovely strangers with pride that he’s lived in the same town for nearly a century, except for his national service. I drive there in the dark and back in the dark. Not every day, but of course on New Year’s Day. The next day I went back for another reason – I do doctors’ appointments and vaccinations. The next week I visited because the neighbour said his eyes were red and streaming. The day after that I had to go again because I left my purse behind. “It’s a sign of age,” my brother said. “No, it’s not,” I should have said. It’s a sign that I’m tired and too busy and sick of driving across the country and back.

The dementia disruptives
Back home in my office I continue my work on a new website for the Dementia Trust, a tiny charity that funded my work when I was a university professor of dementia studies. The trustees, mainly older retired professional people, are volunteers. As a charity it’s almost unique in that it gets no money from government. The trustees know of big-name organisations that swallow fat grants in exchange for not making a fuss. The ones that just go on about “living well” with dementia and “singing for the brain”, saying little or nothing about the shortcomings of a health and social care system that’s not designed for people who didn’t conveniently die when they retired. My dad has gone on to live for another 30 years (so far). He’ll join the over 15,000 centenarians, I bet. With luck, supported by their children, if we don’t die first as our longevity stalls and drops.

The Dementia Trust aims to be disruptive. Trustees include retired doctors, lawyers, clerics, nurses, musicians… the sort of people who have seen a transformation in the understanding of ageing and dementia over their long careers. But there’s no corresponding transformation in the system. I plant some unexploded verbal bombs in their draft blog pages to see who’ll notice.

Clickbait vs care
As January bowls along, I get lots of media opportunities to talk about social care and the NHS. I’m not the greatest expert. The true experts are working themselves into the ground to keep the system going. Even if journalists found them, they’d be too afraid for their jobs to talk. So I get to speak out for them while they fight to keep older and frail people safe. One night I just can’t speak any more, and tell the researcher, “I’m sorry I can’t go on your programme. I am too tired to say yet again today that this extra money promised by the prime minister doesn’t amount to much.” Instead, I stay at home and write another blog.

Even though January’s agenda is packed with real news about strikes, blocked beds, cancelled procedures and ambulance waits, plenty of room is made for silly stuff. In response to a story in the middle of the month that claims HRT can prevent dementia I make a plea to the TV audience to find a word that describes news that’s exciting for dementia boffins, but zero practical value to patients, carers, or the public listening, watching, and praying for a cure. False dawns as clickbait. In response to a report in which the football authorities refuse to allow a temporary substitute during the game when a player has concussion, I’m grumpy again. There’s good research showing that time out reduces dementia risk – so it’s shameful to ignore it. I guess it’s about sports industry profit. So speculative nonsense about barmy extrapolation from minimum data on HRT gets more attention. Profits are made from clicks on stories that toy with the distress of family carers of people diagnosed with dementia.

Home truths
I used to think that government strategy was crucial, or that organisational change was the key. It’s not coming fast enough for the people diagnosed now. January blues make me wonder whether my own research has made any difference for me as a carer. So my New Year focus is on the disruptive work of the Dementia Trust and my own writing of careful and disturbingly explicit advice for other carers. How to respond when sibling rivalry blocks care for a frail older parent. How to get someone to eat. How to get poo off soft furnishings. Why millions of benefits go unclaimed and how to get yours. Where to get help. And why HRT can be great for your sex life but is no help for dementia.

“Carers and Caring: The One-Stop Guide: How to care for older relatives and friends” by Professor June Andrews (Profile Books). More info at juneandrews.net

Professor June Andrews is a Scottish nurse and healthcare policy expert who is Professor Emeritus of Dementia Studies at the University of Stirling