My wife's life was dedicated to finding a dementia cure. Then at 50 she was diagnosed with it

Telegraph

2 days ago

In 2023, my wife, Carol, and I renewed our wedding vows as part of a campaign for the Alzheimer's Society. She had lost the ability to speak by then, after living with the disease for more than a decade, yet she opened her eyes and her mouth puckered up when I leant over to kiss her.
Our marriage lasted nearly 45 years until Carol's death, and for 12 of those I was her carer. People assume that was a sacrifice for me, but the opposite is true – looking after her was the greatest privilege.
The first time we exchanged vows was in 1979. She was a primary school teacher and I worked at a university – later I would go on to be a clergyman and historical author. Carol was warm, confident and headstrong, with her shining eyes.
In the same year that our daughter Emily was born, Carol's lovely father, Walter, became unwell with shingles and never seemed to recover. A year later, he was diagnosed with Alzheimer's, at 58. In the next two years, so had four of his siblings – Carol's aunts and uncles – who were only in their 50s. At that time, doctors believed Alzheimer's was purely an illness of the unfortunate elderly, and genetics wasn't thought to play any part.
When our second child, John, arrived three years later, we were overjoyed. The only cloud on the horizon was Carol's conviction that there was a genetic connection to her family and Alzheimer's. She refused to let it go, and in 1986, she responded to an advertisement that was placed in an Alzheimer's Society newsletter, from researchers at University College London (UCL) who were studying the disease and looking for families with two or more members affected by Alzheimer's.
Sure enough, Carol was proved right. By 1991, those UCL scientists had identified a gene that all her affected family members shared. It's arguably the most important breakthrough made in the history of this disease, and galvanised researchers to target the causes of dementia rather than just treating the symptoms.
Instead of falling apart, Carol committed to supporting research into the disease and co-ordinated her family members to take part too. Every year, she travelled from our Midlands home to London for MRI scans, blood tests and cognitive testing. And over the course of her doing this for decades, scientists were able to identify the first known genetic cause of the disease, in research part-funded by Alzheimer's Society: a mutation to the amyloid precursor protein (APP) gene which caused too much amyloid protein to build up in the brain, clumping together to form plaques and resulting in brain cells dying.
Although Carol was offered a test to see if she had the gene, she chose not to. 'Well, if there's no treatment that can stop it, or even slow it down yet, then what's the point?' she'd say. 'I could get run over by a bus tomorrow, I've got a good life and I'd rather not know whether it's going to be shorter than I'd hoped for.' Carol always looked on the bright side. As I was a Methodist church minister, our family moved parishes every few years and Carol had always been brilliant at organising the upheaval.
Yet, around the age of 50, she suddenly became more overwhelmed with the packing: she was more forgetful, and it distressed her. Our children, by then grown up, noticed she had stopped phoning them as much and asking them about their lives.
Just before Christmas in 2012, Carol was diagnosed with 'mild cognitive impairment'. We all knew what it meant. And the doctors knew our family well by then. She sat calmly listening as this dreaded news was delivered. It was me who broke down in tears; I'd always imagined it would be the other way round.
The following months were hard for Carol. She would wake up crying some nights, knowing precisely the future awaiting her. Her whole raison d'etre for years had been to drive forward the search for a cure, but overnight it had morphed into learning to cope as someone living with dementia. She was determined to carry on giving herself to the research, even though the lumbar punctures weren't nice. 'Well, I've come this far,' she would say.
Knowing that our children both had a 50-50 chance of developing Alzheimer's in the future, Carol longed for a cure or drug to at least slow the disease's progression. 'If not in time for me, then for the next generation,' she said.
My role became to support Carol as best I could, to help soothe all the anxieties that are ramped up with Alzheimer's. While she was in the milder, earlier stages of dementia, Carol and I shared those difficult conversations about the future. We both knew it was important to sort out our finances and get power of attorney in place. We also talked about what would happen as the disease progressed. We wanted to keep her at home as long as possible, though she hated the idea of losing her dignity and wanted me to get help when the time came to look after the more personal care: washing and using the loo.
Living through a loved one's Alzheimer's decline has been likened to watching a sandcastle. Little bits of sand trickle away gradually and often imperceptibly, but there are also times when unexpectedly larger chunks fall off the castle because of this gradual consistent trickle. This is exactly how it felt as she transitioned from early dementia to the later stages.
We were lucky enough to have had incredible support from our GP, social workers, care agency staff and Admiral nurses, when the time came for back-up. And of course, the love and support of our children, John and Emily, and Emily's daughter, Eleanor, who would come and stroke her granny's hand.
Emily and John face the dilemma of whether to undergo genetic testing, which they will do one day, when they are ready. The doctors have all Carol's scans over the years showing the increasingly dark spaces that overtook her brain as the disease took hold. John has looked at all these with the doctor, but I can't bear to. Instead, I prefer to look at the memory book I would pore over many times with Carol – all our happy photographs from the sum of a wonderful life.
During the pandemic, Carol lost the ability to walk, or negotiate stairs and struggled to feed herself. Then from 2021 her condition escalated at a frightening pace as she started having major seizures that robbed her of any mobility – incontinence became an issue – and eventually ended any speech, apart from the occasional yes and no. I'd hug her, kiss her head and hold her hand to feel close to her.
Of course there were challenging times when I'd need to leave the room to take a moment. But while our love changed shape, it never left us. I didn't see the disease; I still saw Carol as the woman I loved up until the day she drew her last breath last March.
Because Carol had continued to be so involved at the Dementia Research Centre, I had promised I would ensure her brain was donated to medical research, come what may.
As Christians it seemed a particularly fitting day to die on Good Friday, but it proved an extra practical challenge getting urgent refrigeration on a bank holiday. I made sure it happened though – I couldn't have let her down on her final wish.
Alzheimer's Society uses the forget-me-not as its emblem, and I planted these pretty blue flowers in our garden. They blossomed just before Carol died. She was 70.
Thanks to Carol and all the dedicated scientists working in this sphere, I'm optimistic we will be able to test for Alzheimer's much sooner and have drugs available to slow the disease down. There is still progress to be made, but I take great comfort in the fact that Carol contributed so much to this fight.
As told to Susanna Galton