There can’t be many individuals who spend years raging and grieving over the decline of a mum or dad from dementia with out questioning if it awaits them too.
I’m one.
My mom died of this vicious mind situation in 2012. And hardly a day has handed since when that query hasn’t been darting across the fringe of my thoughts, flaring ridiculously into view each time I misplace a phrase, a reputation or a pair of glasses.
Really it’s completely regular in a busy life to lose your specs or marvel what you went searching for within the cabinet.
However inform that to these of us within the traumatised subsequent era, who’ve watched family members undergo in methods we will nonetheless hardly bear to consider. Is that this, we ask ourselves, the beginning of the horror once more?
Now, for the primary time, we will discover out for positive.
A easy blood take a look at, taken as a part of a analysis programme and backed up the place crucial by a lumbar puncture and PET scan – which produce three-dimensional photographs of the within of the physique – can inform us if amyloid, a mind protein implicated in Alzheimer’s illness, is already current.
I’ve made a movie about what which means for people like me of their 50s and 60s with a household historical past of Alzheimer’s, the commonest of the sicknesses resulting in dementia.
And guess what? Deciding if you wish to undergo with it’s not so easy.
My mom, Mamie Baird, was one of many pioneering feminine journalists of the Nineteen Fifties.
Brilliant, intelligent, quick-witted and humorous, she was nonetheless writing and giving hilarious after-dinner speeches into her 60s.
However like one million or so others within the UK, she succumbed to a illness that gnawed at her persona and cognition till it consumed her capability to perform in any respect.
There was nothing to assist her: Little help, and no drug to mitigate the signs that over time made life an agony for her and for all of us who liked her.
Dementia is just not a pure a part of ageing, though the chance will increase with age. It’s an sickness attributable to one, or a mix, of quite a few mind situations.
My mom was recognized with each Alzheimer’s and vascular dementia, and though we had good occasions collectively within the years afterwards, many laughs and far joyfulness within the second, the progressive incapacity and disconnection from herself have been painful to her past phrases.
In 2014, I printed the ebook The place Reminiscences Go, a combination of memoir and journalism, to spotlight what the expertise is like for households who must battle on with out hope of enchancment – and I used to be surprised by the response.
Within the hundreds of messages I bought from throughout the nation, it felt as if an awesome floodgate of ache and household loneliness was opening.
Now 10 years on, there may be hope.
Testing, remedies and remedy
Scientists have proven that the build-up of amyloid within the brains of individuals with Alzheimer’s might be efficiently cleared.
They’re satisfied that if medicine already in growth (and no less than one, lecanemab, is now licensed to be used within the UK, though not but on the NHS) are given to folks earlier than they develop signs, Alzheimer’s might be stopped in its tracks.
As Prof Craig Ritchie, who runs the pioneering Scottish Mind Sciences (SBS) in Edinburgh, says: “We will remedy Alzheimer’s earlier than it turns into dementia – simply as we discovered to cease HIV earlier than it grew to become AIDS.”
However to do this, scientists like him want many hundreds of individuals to return ahead for testing earlier than they’re acutely aware of signs.
Which implies that folks like me, nonetheless gaily going about regular lives and tackling demanding jobs, must be ready to seek out out that they have already got the illness technique of Alzheimer’s happening of their brains.
Prof Ritchie, who I initially met by means of my work with the music and dementia charity Playlist for Life, instructed I be a part of the large analysis cohort he’s making an attempt to collect at SBS.
“In spite of everything, Sally,” he mentioned, “you would possibly equally uncover you’re not amyloid-positive. Think about the reduction that might be.”
And if it seems that I’m? If I do know what can’t be unknown, what then?
Therapies are coming, however they’re not right here but. The paradox is that provided that folks like me be a part of analysis programmes like Craig’s can they arrive in time to save lots of these of us in our 60s now.
I requested my circle of relatives about this.
My 4 sons assume I ought to go forward and do it. Discover out the reality, they are saying, and let’s cope with it collectively.
However my daughter, nonetheless traumatised by seeing what occurred to her grandma, burst into tears.
She’s afraid that if we do discover out that amyloid is lurking in my mind, with no fast technique of eradicating it, the figuring out will have an effect on our current, not simply our future.
We’re on the cusp of game-changing developments at this time, which, if scientists are proper, may remedy Alzheimer’s quickly.
Biomarkers within the blood will permit folks in danger to be recognized and given the chance to take part in trials for brand new remedies.
That’s good for them and it’s good for his or her youngsters and grandchildren. But when these trials can’t be run at scale with non-symptomatic volunteers, scientists gained’t have the ability to develop this very important subsequent stage of remedies.
In order that they want folks like me. What ought to I do? That’s what my movie is about.