Damage to certain parts of the brain can mean changes to eating habits and other behaviours. Photo / Getty Images
Recognition of these symptoms can help with early diagnosis, which is key to informing treatment pathways and mitigating the condition.
Usually affectionate, it was when Bruce Willis started to become indifferent to his family that his wife, Emma, started to worry about him. In her new book, The Unexpected Journey, she describes how, with the changes in his personality, it was the small and subtle things, such as struggling with speech and developing a stutter, that made her realise that there might be something wrong.
The Die Hard actor has frontotemporal dementia (FTD), a rare form of dementia which is caused when damaging protein clumps build up in the frontal and temporal lobes of the brain.
While dementia is commonly associated with memory loss and, as such, those “senior moments” that happen to so many people as they age, damage to this region can mean changes to personality, behaviour, language and the ability to plan. These symptoms can also subtly present themselves long before a diagnosis is made.
Jonathan Schott is the chief medical officer for Alzheimer’s Research UK and a professor of neurology at the Dementia Research Centre, UCL.
“There’s more to cognition than memory,” he says. “Sometimes there are people who have dementia and whose memory is fine. Instead, the condition may affect their vision or their behaviour.”
There are two broad categories of dementia: vascular dementia and neurodegenerative dementia. The former occurs when there is a disruption of blood flow to the brain, restricting oxygen and nutrients and causing cell death. The latter occurs when abnormal protein clumps collect in certain parts of the brain. The location where these proteins accumulate can affect what symptoms are exhibited. In Alzheimer’s disease, for example, the proteins tend to affect the brain regions that are involved in day-to-day memory.
Early diagnosis helps to inform treatment pathways and mitigate and manage the condition. UK NHS patients are expected to get a new blood test for Alzheimer’s within the next few years which could revolutionise diagnosis. Called plasma p-tau217, the test has been shown to be effective in checking for two proteins (amyloid and tau) in the brain which are linked to the disease. Researchers are hoping that they can prove this test will detect the levels of these proteins quicker and improve the pathway for diagnosis.
Recognition of early signs can help with early diagnosis; consequently, identifying those signs can be advantageous for sufferers.
Schott continues: “We think that the underlying brain changes that cause dementia happen many years before symptoms arise, and start slowly and subtly.”
Helen Metcalfe is one of Dementia UK’s 450 Admiral Nurses, who care for and support people with dementia and their families. She cautions that signs and symptoms can be difficult to identify. “The brain is such a complex organ, and everybody’s journey is completely different. It is often only after diagnosis that families look back and recognise there were a few signs that were not obvious at the time.”
So, are there some common signs that may help identify early cases?
Eating habits
“Someone might start liking foods they previously disliked, or vice versa,” Metcalfe says. “They may develop an aversion to certain food colours, textures or smells. Some may report a metallic taste.”
Sugar cravings can also be a symptom of FTD. “This can be a liking or craving for sweet foods that develops where there wasn’t one before. It can also present as the inability to control cravings, whereas previously they could,” explains Schott.
People with Lewy body dementia (LBD), which is related to Parkinson’s disease, may struggle with cutlery use because of difficulties with co-ordination, fine motor skills and tremors, often leading to frustration and embarrassment during meals.
Bad dreams
A 2022 study found that distressing dreams can be a predictor of cognitive decline and all types of dementia in middle-aged and older adults without cognitive impairment or Parkinson’s disease, especially among men.
Metcalfe says: “People might report that their dreams have become more vivid. What we sometimes see in dementia is more movements during sleep. We think that this is a response to very vivid dreaming.”
Change in sex drive and behaviour
Changes in the brain caused by dementia can affect libido and can both increase and decrease sex drive. They can also affect sexual behaviour, as Schott explains: “Some people with bvFTD [behavioural variant FTD] can become disinhibited and display inappropriate sexual behaviour, such as making sexually explicit comments to strangers or loved ones.”
“This can be difficult to manage,” adds Metcalfe. It’s important to seek support from a dementia specialist, especially if their behaviour becomes abusive.
Strange behaviours
Eating from someone else’s plate and other behaviours not normally deemed socially acceptable could also be an indicator of dementia, although Schott recommends looking at behaviours in context. “The key,” he explains, “is to ask if the behaviour is unusual and out of character.”
Frontotemporal dementia, particularly bvFTD, is characterised by significant changes in personality and behaviour, such as social inappropriateness. “If someone starts behaving abnormally, dressing inappropriately, or saying inappropriate things, these can be red flags,” explains Schott.
Loss of empathy
Another potential indicator of early FTD can be loss of sympathy or empathy, loss of humour and extreme apathy. While these can also be an indicator of depression, it is advised to speak to a GP if these symptoms develop and are out of character.
“Laughing at things which might be inappropriate, or not finding things funny that they formerly found amusing can also be a symptom,” adds Metcalfe.
Vision problems
Alzheimer’s disease can cause problems with vision, sometimes typified by difficulty in finding one’s way around an environment or locating objects on a cluttered desk.
“Visual problems can be due to a condition that we call posterior cortical atrophy,” explains Schott. This is a rare form of dementia, often considered a visual variant of Alzheimer’s disease, characterised by progressive degeneration of brain cells in the back of the brain. It tends to affect people in their 50s and 60s.
Difficulties judging depth perception can also be a sign.
“You might notice someone bumping into an object,” says Metcalfe. “It’s quite common that someone thinks a step is there when there isn’t one. As a dementia specialist nurse, if I hear that someone’s had a fall, I will be assessing whether that could be a depth-perception issue.”
Hallucinations
Visual hallucinations are characteristic of LBD. “They are typically silent and non-threatening,” says Schott. “They are often small. For example, someone will see a crumb on the carpet that’s not there,” adds Metcalfe. Patterned walls or patterned floors can make these hallucinations worse.
Language problems
One form of FTD, primary progressive aphasia (PPA), impacts language capabilities. Someone with PPA may have trouble finding the right words to describe something and may struggle to get words out, or have problems understanding what words mean.
“It is almost as if they are losing their own personal dictionary,” says Schott. “They can’t quite find the correct word and talk in generalities.”
Both experts take pains to point out that most of these symptoms can be attributed to a range of different possible causes and that while it’s important to be vigilant, it is also important not to jump to conclusions.
As Metcalfe says: “Just because someone’s tastes have changed, it doesn’t necessarily mean that they have dementia. Likewise, if your social interaction with a loved one has changed, it might just be because they had a bad night’s sleep.”
Problematically, some symptoms are not easily recognised or acknowledged by the person displaying them, particularly symptoms which involve behaviour.
Schott advises comparing yourself with those around you with similar life experiences.
He explains: “Is what you’re experiencing very different to those in the same age group as you? Listen to other people, because sometimes you may be unaware that you’ve got any problems, and it may be others who notice.”
“If you are at all concerned about any potential symptoms or about how a loved one is behaving, I’d always recommend visiting the GP,” says Metcalfe.