Will I be diagnosed with Alzheimer’s like my mother?

There aren’t many people who spend years feeling angry and sad about losing an elderly person from dementia without thinking that they too are waiting.

I am one.

My mother passed away from this malignant brain condition in 2012. And hardly a day has gone by since that question hasn’t been on the back of my mind, which seems ridiculous every time I misspell a word, name or couple. glasses.

It’s really normal in your busy life to lose your specs or wonder what you’re looking for in your closet.

But say that for those of us in the traumatized next generation, who have seen loved ones suffer in ways we still cannot imagine. Is this, we ask ourselves, the start of another horror?

Now, for the first time, we can find out.

A simple blood test, taken as part of a research program and supported if necessary by a lumbar puncture and a PET scan – which produces a three-dimensional image of the inside of the body – can tell us if amyloid, the brain protein affected by Alzheimer’s. disease, already there.

I have made a film about what it means for someone like me in my 50s and 60s with a family history of Alzheimer’s, the most common of the diseases that cause dementia.

And guess what? Deciding if you want to go through with it is not so simple.

My mother, Mamie Baird, was one of the pioneering female journalists of the 1950s.

Bright, witty, quick-witted and funny, he was still writing and giving hilarious after-dinner speeches in the 60s.

But like millions of others in the UK, he suffers from an illness that disrupts his personality and cognition to the extent that it impairs his ability to function.

There was nothing to help her: Little support, and no medicine to ease the long-lasting symptoms that made life miserable for her and all those who loved her.

Dementia is not a natural part of aging, although the risk increases with age. It is a disease caused by one, or a combination, of several brain conditions.

My mother was diagnosed with Alzheimer’s disease and vascular dementia, and although we had a great time in the years that followed, lots of laughter and joy at the time, the inability to move forward and disconnect from ourselves hurt her beyond words.

In 2014, I published the book Where Memories Go, a mix of memoir and journalism, to highlight what it was like for families who had to struggle without hope of improvement – and I was surprised by the reaction.

In the thousands of messages I received from all over the country, it was as if a huge door of family pain and loneliness opened.

Now 10 years on, there is hope.

Scientists have shown that the accumulation of amyloid in the brain of people with Alzheimer’s can be successfully removed.

He believes that if drugs are developed (and at least one, lecanemab, is now licensed for use in the UK, although not yet on the NHS) given to people before they develop symptoms, Alzheimer’s could be stopped. .

As Prof. Craig Ritchie, who pioneered Scottish Brain Sciences (SBS) in Edinburgh, said: “We can treat Alzheimer’s before it becomes dementia – just as we learned to stop HIV before AIDS.”

But to do that, scientists like him need thousands of people to come forward to try it before they know the symptoms.

That means that people like me, who still enjoy a normal life and complete a demanding job, should be prepared to find out that they have developed Alzheimer’s disease process in the brain.

Prof Ritchie, who I originally met through my work with the music and dementia charity Playlist for Life, suggested that I join the huge research group he was trying to assemble at SBS.

“After all, Sally,” he said, “you might find out you’re not amyloid positive. Imagine the relief you’ll feel.

And if it turns out to be me? If I know what I don’t know, then what?

A cure is coming, but not yet. The paradox is that if people like me were involved in research programs like Craig’s, they could have come in time to save us in our 60s now.

I asked my own family about it.

My four children think I should go first. Find the truth, he said, and let’s get it over with.

But my son, who is still traumatized by what happened to his grandmother, cried.

They are afraid that if we find out that amyloid is in my brain, without an immediate way to remove it, knowing it will affect the present, not just the future.

We are now on the cusp of a game-changing development that, if scientists are right, could soon cure Alzheimer’s.

Biomarkers in the blood will allow people at risk to be identified and given the opportunity to participate in trials for new treatments.

That’s good for him and good for his children and grandchildren. But if these trials can’t be scaled up with asymptomatic volunteers, scientists won’t be able to develop this important next stage of treatment.

So it needs people like me. What should I do? It’s about my movie.

Sally Magnusson: Alzheimer, a Cure and Me will be broadcast on BBC Scotland at 9pm on Sunday 13 October. It will also be available on iplayer.