“I remember one husband whose wife took a pan out of the oven without thinking to put oven gloves on first, because her impulse control was impaired,” Oyebode recalls. “Another woman told me that she had sped after an ambulance because she was so excited by the flashing lights. Other people shoplift. Some even end up becoming divorced before they’re finally diagnosed. Their partners see a huge change in personality and believe that the person living with dementia no longer loves them.”
Here are the six unexpected signs of early-onset dementia and what it’s possible to do about them.
1. You can’t see as well as you used to
Some subtypes of dementia, like posterior cortical atrophy (PCA), are most likely to begin when someone is aged under 65. PCA typically presents itself for the first time when those who develop it are in their 50s. The posterior part of your brain processes the visual information that comes from your eyes, so typically, the first sign of PCA is changes to your vision. This can show up as “difficulty reading, judging distances and depth perception,” says Dr Natalie Ryan, a consultant neurologist and senior clinical research fellow at the Dementia Research Centre of University College, London.
“People with PCA might go to an optician and ask for help, but the problem won’t be identified, because it’s not an issue with your eyes but with your brain,” says Oyebode. Ryan agrees that this is common. “People often don’t appreciate that visual symptoms can result from changes in the brain caused by diseases that underlie dementia,” she explains.
People with this kind of dementia are often still young and physically fit, “so they can use helpful strategies to live with these visual impairments,” says Ryan. “This might include keeping the home well-lit and clear of obstacles, and avoiding flooring that is heavily patterned, as this can make the space harder to navigate.”
2. You have had a personality change
Frontotemporal dementias (FTD), an umbrella term for a group of other rare dementias, are also more likely to occur in people aged under 65. These kinds of dementia develop in the front and sides of the brain, and can present themselves when a sufferer is in their 40s. Frontotemporal dementia can cause the sorts of personality changes that Oyebode says can lead to divorce and the breakdown of other relationships. Where this is the case, it’s referred to as behaviour change FTD.
“People with this kind of dementia can find it much harder to put themselves in others’ shoes, and to control their impulses,” says Oyebode. “This is actually a change caused by brain damage, called disinhibition. To people that know the person in question, it would just appear as a personality change.”
Of course, this can be incredibly tough to live with. It can also be very difficult for other people to understand. One of the things that can be most helpful for people living with behavioural variant FTD (and their loved ones) is “to get specialist information, advice, support and opportunities to connect with other people who are living with similar experiences by attending peer support groups, such as through Rare Dementia Support,” says Ryan.
3. It’s hard to find the right words – or remember them at all
A loss of language ability can be caused by a specific kind of frontotemporal dementia called progressive non-fluent aphasia. This kind of dementia affects the brain’s language centres and “makes it hard for people to find the right words for things,” explains Oyebode. Another type of dementia called semantic dementia occurs after damage to the same parts of the brain and can cause trouble understanding the meaning of words.
Ryan recommends that people with this problem “seek out specialist speech and language therapy,” as there are “several kinds of primary progressive aphasia that present in different ways, so people may benefit from a variety of different strategies to support their communication”.
4. You’re fine at home but get lost on holiday
While Alzheimer’s might not typically be the cause of early onset dementia, it is not unheard of, and can often “show up because of how it interrupts the activities that an older person might not usually carry out,” says Oyebode. One example of this is that someone might feel confused and disoriented when they visit new places. “It might be that someone functions well at home, but on holiday they get very lost in the hotel and spend hours looking for their room.”
“If someone with a rare form of dementia moves to a new setting, it is really important that those who are supporting or caring for them know as much as possible about that person – their likes, dislikes and activities they might enjoy, as well as understanding the difficulties that their particular condition may cause,” says Ryan. “Some general strategies that can help with managing confusion in new settings include bringing in familiar items like favourite objects and photos and maintaining predictable routines,” while loved ones and carers might find it helpful to use “calm, reassuring and clear communication”.
5. Learning new things is not as easy as before
Severe difficulty in picking up new systems of doing things at work, or learning new skills, may also be a sign of Alzheimer’s in people under 65, Oyebode says. “It’s easy to put it down to not being as sharp as you once were, or not being good with computers, but if you really do struggle to learn new things, then it might be a sign that cognitive problems are beginning to develop,” she explains.
A diagnosis of dementia here is crucial, as we all struggle to pick up new skills from time to time and learning new things is more difficult for us all as we age. However, if this problem is caused by dementia, “there are helpful strategies that can still help you to learn new things,” says Oyebode.
One is “spaced retrieval”: try carrying out a set of instructions once and repeating it after 20 seconds, then doubling the time gap before trying again, and doubling it once more after that, before repeating the action.
6. It’s harder to remember names, conversations or recent events
Trouble and changes to your short-term memory are a hallmark sign of dementia, though in midlife it may easily be put down to the menopause or tiredness. If you struggle to keep track of recent events, to follow conversations or to remember facts, then it could be Alzheimer’s disease that is causing your problems.
Again, if you develop Alzheimer’s at a young age, “there is really a lot that can be done to support your memory and cognitive functions,” says Oyebode. “We know that people can remember and understand new information better when it’s presented in more than one way. For example, to remember a new phone number or a name, try both writing it down and repeating it out loud.”
