TV journalist Sally Magnusson has said she is "very nervous" but resolute after deciding to take part in a pioneering Scottish study which could show if she is likely to develop dementia.
The Reporting Scotland presenter and author wrestles with the dilemma of finding out if she is showing any early signs of the disease in a thought-provoking new documentary after revealing that 'hardly a day goes by without me thinking am I next?"
Her mother, Mamie Baird - as she was known before marrying Mastermind presenter Magnus Magnusson - died at the age of 86 in 2009, eight years after being diagnosed with mixed dementia [ combination of Alzheimer’s disease and vascular dementia.
"It's this whole question of knowing something that you can never un-know," she says.
"I want to beat this thing...it's so painful but at the same time another part of me thinks what will be will be," says the 68-year-old, who founded the dementia music therapy charity Playlist for Life after Mamie's death.
She meets up with Professor Craig Ritchie, the psychiatrist and dementia expert who left the NHS and launched his own company - Scottish Brain Sciences (SBS) - after becoming frustrated by the apparent disconnect between "what we know we could do and what we are allowed to do."
He is aiming to collect the biggest ever database of people with a family history or genetic link for the disease who have not yet developed symptoms.
The hopes are that drugs - including one already developed - could be used to treat the amyloid plaques, that are known to cause the disease, before any symptoms develop and turn dementia into a curable "rare event".
The documentary is narrated by Magnusson as if she is talking to her mother - at one point she acknowledges that she would take part in the research herself if she had been given the chance.
She knows that she may face the possibility that she has signs of the disease when there are no drugs currently licensed in the UK to treat people before are symptomatic.
"As Craig Ritchie said very starkly, there is a cure coming as far as he's concerned," she says, "But the big but is, he needs people to test that potential cure on - and not just him, other researchers too - and the very people he needs are the very people who least want to think about it and that's the wider dilemma of which I'm only a small microcosm."
I can't go dishing out the rhetoric on this if I'm not prepared to do it myself
She reveals in the programme that nobody in his trials who have early signs of the disease wanted to speak to her for the documentary, attributing this to the stigma that continues to surround the illness.
Prof Ritchie carries out a few simple cognitive tests and says the journalist is not displaying any symptoms but she could still be "on the curve".
All four of her sons say she should herself forward but her daughter Anna Lisa is unsure because she believes the knowledge is "gambling with your present". All the family deliberations are un-rehearsed, which makes for a compelling watch.
She seeks the advice of her sisters Anna and Margaret who shared the care of their mother through her illness. Margaret says she still feels traumatised about her death and doesn't feel able to consider the study right now.
Magnusson also speaks to John Jennings, a man in his 30s whose mother died at 57 and has a 50/50 risk of inheriting the gene for early onset form of the disease. He has chosen not to take the tests with the knowledge that in order for the drugs to make a difference he should be taking them now.
The Glasgow-born journalist later travels to London to interview consultant neurologist Cath Mummery who says one drug lecanemab could be trialled on patients by the end of the year and "fully embedded" within the NHS in the next five to ten years.
However, just a week after they meet, medicines regulators in England withholds approval for the drug - which can slow progress of the illness - on cost grounds.
The decision in Scotland is still awaited and Henry Simmons, chief executive of Alzheimer Scotland, has urged the Scottish Government to lead by example.
In a touching moment at the end of the documentary the journalist's daughter says she will support her to take part in the trial.
"I was prepared to say to her 'I won't do it unless you are happy with it' and she turned round and said 'I think maybe you should do it'," she says. "It was lovely - it wasn't planned.
"If I thought I would be able to escape by blaming my daughter, that dealt with that one," she adds laughing."
She says she "probably quite usefully" hasn't given it any more thought at the moment because of general busyness and a book deadline but will get round to it in the New Year.
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"It's not a simple process," she says.
"Your blood may show the biomarkers for amyloid, which can be a sign of Alzheimer's and often is but might not be.
"So the next step is to eliminate more sinister things. If it was still looking as if it probably was Alzheimer plaque then you would do a lumber puncture and then an MRI scan to confirm.
"At any stage you can easily be told go away and sleep easy, you're fine or you are told you have got amyloid plaques that are a precursor for Alzheimer's and you might be eligible for this trial or that trial.
"But then once you are in that trial it might be a placebo you are on... but you would be helping and not just helping the wider world you would be ultimately be helping yourself.
"We are on the cusp of something really hopeful and really big and really important but to get over the hill you need people to step forward before they are quite ready and I can't go dishing out the rhetoric on this if I'm not prepared to do it myself.
"We all just have to think about our children and the next generation and let's get this thing nailed.
"When it comes to it, I'll be nervous - very nervous, of course I will - but I think it's the right thing to do.
"We will try and treat it together as an adventure."
For more information about brain health visit Scottish Brain Sciences
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