MY mother asks me frequently: “Where am I? What is this place?” She cranes her neck to look out of a window as if the view – newly revealed each morning – will offer some clue as to the bewilderment of geography.
I tell her the same thing every time she asks: “We’re at home, Mum.”
She asks me again five minutes later. “Where am I? What is this place.”
The writer, Suzanne Finnamore, describes dementia as “a land where my mother lives … an actual place”, where linear time doesn’t exist.
Is it morning or nighttime, Mum asks.
It’s almost noon, I say. The cast of light, the length of shadows, none of these give anything away anymore. For a while, I thought putting on her nightgown might be a hint to which end of the day we were at.
Not now.
If dementia were a place, if it were a country, it would boast the world’s 15th-largest economy. The World Health Organization and Alzheimer’s Disease International (ADI) put global dementia costs at $1.3 trillion a year, a number that’s predicted to rise to $2.8trn by the end of the decade. That makes dementia bigger than Mexico and a significantly larger economy than the Netherlands, Turkey or Switzerland.
Some 16% of this staggering figure is attributed to medical costs, 34% to social care. But an overwhelming chunk – half of it – is the cost of those caring for parents or partners with the illness. Global informal care for dementia, says ADI, is estimated at 133 billion hours annually, “the equivalent of 67 million full-time workers”.
I’m one of them. You might be too.
I never thought about dementia until I had to, until my mother clearly and obviously presented with symptoms a few years ago. Symptoms we didn’t ignore exactly, but which we paid careless heed of. Until, that is, she asked me one day and out of the blue: “Tell me, when did we first meet?”
Professor Craig Ritchie, chief executive and founder of Scottish Brain Sciences and previously of Brain Health Scotland, says: “We talk about there being a long silent period of this disease before dementia develops, but it’s only silent because we are not listening.”
He is right. And I wasn’t listening. I wonder now – now that I know the numbers – why? Why didn’t I hear dementia coming when my mother began to drop words, when people and place names went?
Was it because I couldn’t conceive of her sharp intellect being blunted by cognitive -collapse? Not my mum! Or because I excused those memory lapses lightly as “senior moments”; she’s just old, she’s bound to forget.
How quickly, though, muddled recall deteriorates so there is no recall at all, how quickly no recall gives way to incontinence and uncharacteristic rage and not knowing where the bathroom is even though you went 30 minutes ago and the phenomenon of “sundowning”, a euphemism for an end-of-day distress that borders on psychosis; this is not just an illness of forgetting. I know this now too.
There is, says Lewis Arthurton at ADI, still a “significant amount” of awareness needed for dementia. I wasn’t alone in dismissing my -mother’s earliest symptoms as an inevitable part of getting older. In 2019, ADI surveyed more than 70,000 people globally and found that 62% of health care practitioners believed dementia was a normal part of ageing. One in four of the general public still think there is nothing we can do to prevent it.
But they’re wrong, on both counts: Not only is dementia – in an estimated 40% of cases – avoidable, but the manifest, and devastating, symptoms of the illness could be prevented even in the face of the pathology of, for example, my mother’s diagnosis, Alzheimer’s Disease.
Today, 55m people in the world live with dementia (Alzheimer’s Disease is the biggest cause), a number expected to rise to 139m by 2050. But Ritchie says, given what we know now, “dementia could – should – be a really rare condition by 2050”.
And what we know now is that there are a dozen “modifiable risks” as defined by The Lancet medical journal; things we can – must – do to try to sidestep this life-stealing condition.
This week, @WeidnerWendy, Head of Research & Publications, delivered a statement regarding the necessity of including anti-#dementia medications on the @WHO Essential Medicines List ahead of revisions & updates to the list. Read the full statement at: https://t.co/Ial5kd78cr pic.twitter.com/bT1k82obnM
— ADI (@AlzDisInt) April 29, 2023
Some of these things make sense on a cardiovascular level – as the experts tell us, what’s good for our heart is good for our head: Stop smoking, don’t drink too much, exercise – a recent study in the UK found the risk of dementia was halved in people who walked 10,000 steps a day – watch your weight, keep an eye on blood sugar and your blood pressure.
But there are other things you should do too – stay curious, remain engaged, keep learning and get your hearing tested.
So why my mother – a voracious reader, a slender, non-smoker who drank little, never suffered from diabetes or hypertension and had perfect hearing?
Depression, possibly. She endured catastrophic episodes that began in her 30s and put her in hospital. Depression is an independent risk factor for dementia – and in her case, episodes were long.
She’d go months without moving, months when she didn’t eat properly, months when she didn’t get out which exacerbated another risk factor – social isolation. A severe mental illness meant she kept being dealt bad cards in an already poor hand.
Depression, says Ritchie, especially my mother’s recalcitrant, recurring, treatment-resistant type, makes for sustained cortisol elevations, which means the brain is in a constant state of -inflammation and many of its functions are disrupted.
It can’t use glucose effectively, nerve activity is upset. Depression may, even he says, drive the amyloid plaque and tau-tangled pathology of dementia.
Ritchie is the second person to tell me the same thing in a week: Dementia is amongst the most feared illness in the world today.
Does that mean, I ask Arthurton, that the Big C has been replaced by the Bigger D? Yes, he says. “That’s a great, if chilling, way to describe it.”
And, he continues, whilst “dementia (in the case of Alzheimer’s Disease) was discovered at roughly the same time as cancer, investment and research in therapies for cancer have been -developed exponentially faster than those for Alzheimer’s”.
The second person to describe the growing fear of developing the Bigger D is Professor Vegard Skirbekk, a professor at the Columbia Aging Center, Columbia University and a senior researcher at the Norwegian Institute of Public Health who recently published a study that suggested a long marriage in mid-life might help prevent dementia. My father died -suddenly when Mum was 44. Another bad card.
Skirbekk is cautiously optimistic about preventative measures but is anxious about individual commitment to them. Adhering to all 12 risk modifications takes serious dedication.
“We all know what to do,” he told me. “It’s doing it that’s the problem.”
And I agree – where once I never thought about dementia, now it’s all I can think about. I scour papers daily for news on the illness, set a Google alert to keep me in touch with the latest research.
What should I eat, what shouldn’t I eat, how far to walk, how fast, why I should floss because even how you brush your teeth could play a part.
Sometimes I worry that the list of things I need to do to protect myself and the list of things I need to avoid grows weekly. Is this because we have no answers?
Or because we are getting closer to them?
Sebastian Walsh of the University of Cambridge would agree with Skirbekk.
“To make healthy lifestyle changes (and stick to them), requires a lot of ‘agency’.”
Agency means having the resources – be they financial, time, social, cognitive, or confidence – to take control of one’s own life and living conditions. Individual-level approaches tend to exacerbate health inequalities – dementia is increasingly more evident in people from deprived areas.
There’s also the “ sheer scale” of some of those risk factors, he says. Obesity affects two-thirds of adults in the UK. Mental health disorders like depression are highly prevalent. Hearing loss is common amongst the increasing numbers of older people. And we are all exposed to worsening amounts of pollution. To try and tackle these problems without major structural change is simply not proportionate to the size of the problem, he explains.
It’s why he sees the solution at population level, led by policymakers.
“We know from smoking that when a public health problem is accepted, and tackled holistically through meaningful policy change, this can drive major changes in risk, and therefore disease.”
GLOBAL smoking rates are down since 1990 (27% for men and 40% for women), especially in the United States where the government introduced energetic public health campaigns which alerted people to the dangers of tobacco. One oncologist who specialises in lung cancer told me: “We’re seeing the positive impact of warnings on cigarette packets and smoking bans now”.
Campaigns like the anti-smoking ones help create a sea change in attitude which is what you’re after, says Walsh. You want to drive “unconscious behaviour change”, make it easier for people to make healthy choices (in the case of smoking, not lighting up in a public place because it’s not allowed). And sea change is what we need given we’re faced with what has been dubbed a “silver tsunami” of dementia patients.
In Scotland, the tide to drive “unconscious behaviour” is already turning. In 2018, Ritchie was part of the team that founded the Government-supported Brain Health Scotland with Alzheimer’s Scotland, with the goal of “putting in place various offerings” that targeted brain health, starting with vulnerable populations – those with a family history of the illness and Scottish Rugby, given brain trauma is another risk factor.
The aim, says Ritchie, is to create a tool that bridges the gap in “health literacy”. People are afraid of this illness, he said, and fear is made worse when they don’t know what to do to try to avoid it. People need to have this knowledge at their fingertips, he says, so as Walsh says, “the healthy option becomes the easiest one”.
This week, @WeidnerWendy, Head of Research & Publications, delivered a statement regarding the necessity of including anti-#dementia medications on the @WHO Essential Medicines List ahead of revisions & updates to the list. Read the full statement at: https://t.co/Ial5kd78cr pic.twitter.com/bT1k82obnM
— ADI (@AlzDisInt) April 29, 2023
Perhaps the most innovative part of Brain Health’s endeavour to get the number of dementia sufferers down is My Amazing Brain, a learning resource available to educators, parents and children. The programme is built on an acronym, STARS, to drive home the point that we have more connections in our brains than stars in the galaxy. Each letter delivers a message – Spend time with friends, Tuck in, remain Active, Rest and Safety.
Ritchie doesn’t believe there’s any chance the children who are being introduced to their Amazing Brains now will ever get dementia: “None”. He sounds certain. Sure, he says, they may develop the pathology of the disease but their lives won’t be hijacked by the symptoms that have derailed my mother’s. Just as we learned to manage HIV so it doesn’t progress to Aids, so we’ll manage – with lifestyle, with drugs – to contain this condition to something benign, says Ritchie.
Dr David Merrill, director of the Pacific Brain Health Center in Santa Monica, directs me to the Nun Study, a post-mortem analysis of the brains of 678 Catholic sisters between the ages of 75 to 107. On investigation, a number of these women’s brains bore an “abundance” of the markers of Alzheimer’s disease but in spite of this, none of the symptoms in life like my mother’s utter disorientation. It was noted they had remained “cognitively and physically intact”.
My Amazing Brain is the first programme of its kind in the UK. The children who are part of it might be the first of a new generation spared a future in a – presently – over-populated place: somebody in the world develops dementia every three seconds.
Finnamore says that living in the land of dementia “isn’t the defining chapter of her mum’s life”.
But living with a mother who lives there might be the defining chapter of mine. I am aware I am making increasingly considered lifestyle choices to avoid ending up where she is now.
