There is no single test that can determine if a person has Alzheimer’s or another form of dementia. Photo / Getty Images
There is no single test that can determine if a person has Alzheimer’s or another form of dementia. Photo / Getty Images
“This disease has ravaged my family and now it has come for me,” Fiona Phillips said this week, revealing she has been diagnosed with early-onset Alzheimer’s at just 61. “My poor mum was crippled with it, then my dad, my grandparents, my uncle. It just keeps coming back for us.”
Phillips, a former host of ITV breakfast show GMTV, described how even after watching what her parents went through and worrying Alzheimer’s could be in her future too, she never imagined that she’d have to endure a diagnosis so young. “It’s something I might have thought I’d get at 80,” she admitted. Finding out was a “total shock”. “I felt more angry than anything else because this disease has already impacted my life in so many ways.”
Brain fog, anxiety and confusion were Phillips’s main symptoms, leaving her “tearful” and a “shadow of [herself]”. She wrote in The Mirror how she had “cried a thousand rivers in the past few weeks and I’ve got nothing to be sad about. I’ve been fearing for my sanity and am scared to do things I’ve been doing with ease for years.”
Phillips’s husband, This Morning executive Martin Frizell, said they had assumed her symptoms were related to the menopause. They have two children in their 20s. “We got in touch with a menopause specialist who took her under their wing and put her on HRT, but while that improved some symptoms, the brain fog remained.”
After months of tests, experts recommended that Phillips should seek further help and she then got the results she had been dreading.
The Alzheimer’s Society estimates there are around 70,000 sufferers of the early-onset form of the disease in the UK, constituting less than 10 per cent of the 900,000 people in this country living with Alzheimer’s. For people under 65, the route to diagnosis can be long and complex. In Phillips’s case, the warning signs had been there, but as is often the way with early-onset Alzheimer’s, the symptoms didn’t form a clear path towards diagnosis.
How, then, are you to evaluate when to seek help if so many indicators of early Alzheimer’s could also be attributed to other midlife conditions? We asked experts what to do if you are worried your brain fog could be a sign of something more sinister.
Phillips presenting GMTV in 2015. Photo / Supplied
The first point to make is that, while one person develops a form of dementia every three minutes in the UK, and the number of people living with Alzheimer’s is projected to rise by more than 75 per cent by 2040, the risk of getting Alzheimer’s before the age of 65 are low. “Once you get above 65 your risk of getting dementia doubles every five years,” says Tim Beanland, head of knowledge at Alzheimer’s Society. NHS figures show that one in 14 people over the age of 65 is affected by Alzheimer’s or dementia, while in people aged over 80, the risk shoots up to one in six. It means that if you are in your 50s and struggling with one of the possible indicators of Alzheimer’s, it is “much more likely that those are going to be something like stress or depression or the menopause”, says Beanland.
If you present at the GP with symptoms such as brain fog and anxiety, Alzheimer’s will be on their list of possible diagnoses, but it’ll be “quite low down, because it’s much more common that it’s going to be stress, depression, long Covid, in someone of that age,” he adds.
Can you inherit Alzheimer’s from your parents?
So what difference does it make if it runs in your family? That risk factor increases if you have a history of Alzheimer’s (particularly of early-onset Alzheimer’s) in your family. Prof Julie Williams, director of the UK Dementia Research Institute at Cardiff University, runs a team that has collected the largest sample of early-onset cases in the UK and is working to identify the genes that contribute to the disease. She says early-onset Alzheimer’s is “more heritable than late-onset forms”, with a heritability of “around 90 per cent, compared to late-onset Alzheimer’s, which is “around 65 per cent”.
If you have a family history of Alzheimer’s, Prof Williams explains, that does not necessarily make you more likely to get an early version of the disease. “If both parents have Alzheimer’s, your risk is increased, but it’s no guarantee that you’ll get it,” she says, adding that “the majority of early onset cases” are not the result of an inherited faulty gene. Most are the result of “the combined effects of hundreds of genes”, she points out. In very rare cases, there may be just one mutation in one of three genes, which would point to a “direct genetic link”. If more than one family member has been diagnosed with early-onset Alzheimer’s, then, Prof Williams says there is a chance they carry a rare genetic mutation that may also be part of your genetic makeup.
If you think this could be the case in your family, testing is available. “If you have that family history and are worried, the doctor may end up referring you to genetic counselling,” says Beanland. “If you are going to be tested for an Alzheimer’s gene, it has implications for you and your family. Most people who go through the process don’t end up having the test, because they want to live with the hope that they don’t have it. If you’re tested and you’ve got it, you can’t un-know that.”
What are the symptoms?
So what symptoms should you look out for? The key thing, experts say, is a “considerable change”. “Some people just don’t have very good memories to begin with, so it makes it hard to tell if it’s getting worse,” says Barbara Sahakian, Professor of clinical neuropsychology at the University of Cambridge.
“Episodic memory loss” is a common feature of early-onset Alzheimer’s, she says. While older sufferers may struggle with very short-term memory, often repeating the same questions in a short space of time, younger sufferers may simply find they begin to lose things more easily, which can be difficult to pin down as a symptom. A classic example of episodic memory loss could be struggling to recall “where you parked your car in a multi-storey car park”, says Prof Sahakian. Difficulty “learning new things” is another indicator, as is word recall. As we get older, it can take us longer to find a quick response to a question. If you are suffering from early-onset Alzheimer’s “it’ll be even harder” to generate a speedy answer, says Prof Sahakian. Reduced vision and difficulties with decision-making and planning are also typical symptoms of early-onset Alzheimer’s, says Beanland.
“So the profile of symptoms in young onset Alzheimer’s disease is quite different to what you see in older people. It’s a complicated picture for doctors to unpick.”
Is brain fog more likely to be menopause or Alzheimer’s? The simple answer, experts say, is that brain fog is drastically more likely to be a symptom of your mental health or your hormones than it is an early-onset form of Alzheimer’s.
“There are lots of other things that will cause brain fog like menopause, anxiety, depression and long Covid,” says Beanland. “It may be that you need thyroid pills because your thyroid is low, or your iron. Don’t turn up at the GP and say I think I’ve got Alzheimer’s, tell them about your symptoms, and the GP should run tests.”
There is a crossover between the symptoms some women experience during menopause and those associated with early-onset Alzheimer’s (namely, anxiety and memory loss). A recent study suggested a link between the use of hormone replacement therapy (HRT) and an increased risk of dementia. Other studies have found the opposite to be true.
In January, researchers from the University of East Anglia and the University of Edinburgh connected HRT with better memory, cognitive function and larger brain volumes in women who carry the APOE4 gene, which is a risk factor gene for Alzheimer’s. But like so many problems that sit somewhere between emotional and cognitive health, brain fog exists on a broad spectrum; fathoming whether your fogginess is cause for concern can be difficult.
What should you do if you’re worried about brain fog?
As a rule of thumb, experts say it is “much more likely” when you’re in your 50s that brain fog is a symptom of “something like stress or depression or the menopause”. But if you’ve noticed a significant change, there is no harm in getting checked out. The overall advice is to seek help if you feel there’s something wrong.
“If it’s affecting your daily life, if it’s getting you really down, if people are commenting on it, go see the GP,” says Beanland.
Tests for young onset are broadly the same as they are for any form of Alzheimer’s or dementia. “The doctor will take a clinical history, they’ll ask what symptoms you have, when did they start, how are they affecting you. They’ll take a family history, they’ll do a cognitive test where they’ll ask you to do some simple memory tests and some pen and paper tests.
They’ll also take some blood to check whether you have thyroid problems or vitamin problems.” A brain scan (either a CT or an MRI) may follow those initial tests, and because early-onset is more difficult to diagnose, a lumbar puncture (where spinal fluid is taken and tested) is also a common step in younger patients. “It’s a series of steps, and it can take several months,” says Beanland. “It’s really important that people get a diagnosis. It might not be dementia, it might be something else. But if it is, it’s better to know because then you can plan ahead.”
‘I was told I had Alzheimer’s at 54′
It’s the news no child ever wants to have to tell their parents, but Gail Gregory has found ways to cope
Four years ago, I called my parents with news no child ever expects to share: that, aged 54, I had been diagnosed with early-onset Alzheimer’s. They’re both in their eighties and were in shock. “Isn’t that an old person’s disease?” was my dad’s response. My mum asked me how long I had left to live.
My diagnosis felt as unbelievable to me as it did to them. I was running my own personalised teddy bear company when I started to notice my memory just disappearing: I couldn’t remember what people had told me and kept making mistakes. It was embarrassing, to the point where I’d just let calls go to the answerphone to avoid getting in a muddle; another day, I woke up and couldn’t see, then later fell. I put it down to tiredness and made an appointment to see my GP.
Like Fiona Phillips, my symptoms were put down to menopause. This was ultimately ruled out when they checked my notes and saw I’d had a hysterectomy some years earlier. Depression was floated too. It was so difficult to feel my memory failing and to have no answers as to why. I ultimately went to a memory clinic, where as part of one test, the doctor told me to name every animal I could beginning with the letter “P”. My mind went completely blank. I could see my husband, John, out of the corner of my eye, willing my brain to get into gear as it once had, but I couldn’t think of a single one.
It took around a year to get diagnosed in 2019, with the news delivered on Valentine’s Day, in a letter describing “significant decline in all domains” there in black and white. There are many parts of my life that have changed as the condition has progressed. I miss looking after my grandchildren, aged 3-14, as I can no longer travel to where they are and care for them by myself in an area I don’t know well, as I’d get confused.
My husband has been so supportive, but there has been a lot of adapting from the life we once had. We’ve mostly had to do away with the travelling we used to love, as I find myself getting very anxious before we go, and I now struggle in new places. It was also gut-wrenching giving up the business I’d successfully run alone for 15 years when I could no longer function as I needed to; there’s so much of your identity and purpose wrapped up in work, and it was incredibly hard to let that go.
However, I’ve always been a fighter, and that’s how I’m now approaching my condition: I’m determined to live as best as I can with it, rather than sit back and allow myself to deteriorate more quickly. Having never painted before, I felt inspired to pick up a paintbrush – and one of my paintings was even used in an advert for a local opera. I’ve been writing poetry, too, and crafting; I take photos outside, garden and walk a lot – I don’t currently take any medication for the condition – and I think these things help me to keep my motor and cognitive skills as sharp as possible.
Sometimes it feels odd to think that I have Alzheimer’s – even the word seems strange. But I’m thankful that people are talking about it more openly, as that’s exactly what’s needed for people to understand that they can continue living as well as possible. There’s so much negativity around the condition, including from medical professionals, and I don’t think it should be that way.
A lot of people see an early-onset Alzheimer’s diagnosis as the end – and I can promise that it isn’t. If anything, I feel like this is just the start of my new chapter.
A test for dementia and Alzheimer’s
There is no single test that can determine if a person has Alzheimer’s or another form of dementia. A GP will look at medical history and may ask the person to undergo cognitive and functional cognitive tests to learn more about how your memory is functioning and your awareness of time and place. The below is based on a questionnaire used by GPs as a screening tool for dementia, known as the General Practitioner Assessment of Cognition test (GPCOG).
Subsequent recall
I am going to give you a name and address. After I’ve said it, I want you to repeat it. Remember this name and address because I’m going to ask you to tell it to me again in a few minutes: John Brown, 42 West Street, Kensington” (allow a maximum of four attempts but do not score yet).
What is the date? (accept exact date only): 1 point
Clock drawing
Using a circle printed on paper, mark in all the numbers to indicate the hours of a clock (the numbers 12, 3, 6, and 9 should be in the correct quadrants of the circle and the other numbers should be approximately correctly placed): 1 point
Mark in hands to show 10 minutes past eleven o’clock (don’t penalise if the respondent fails to distinguish long and short hands): 1 point
Information
Tell me something that happened in the news in the last week? (Respondents are not required to provide extensive details, as long as they demonstrate awareness of a recent news story): 1 point
