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Memory loss but not dementia: functional cognitive disorder (FCD)

What is functional cognitive disorder?

Functional cognitive disorder (FCD) is an under-recognised condition that is different from dementia.

It causes problems with memory or concentration but, unlike dementia, these symptoms aren't the result of physical damage to the brain or disease. These problems tend be mild at first, but over time they become more deep-rooted and start to affect everyday life. For some people, they can start to look and feel like the early stages of dementia

FCD is a complex condition. Most experts believe that it’s caused by a breakdown in the brain's ability to focus. This leads to a feeling of 'brain fog', making it harder to think clearly and remember things clearly. 

People with FCD often try to compensate for their poor memory by focusing harder on what they’re trying to do. Unfortunately, this sort of effortful thinking tends to make the condition worse, not better. 

Researchers think that this might be because people with FCD are trying so hard to overcome their memory problems that they end up ‘thinking about thinking’ – so much so that it overloads their ability to learn new information. As a result, people with FCD may struggle with everyday tasks that they used to be able to do easily, such as paying bills, buying groceries, or remembering to pick the children up from school. This in turn causes increasing anxiety that something must be very wrong with their brain.

What are the symptoms of functional cognitive disorder?

A person with FCD is likely to frequently misplace items, lose track of what they are doing or saying, or not be able to follow the thread of a conversation. They might also go ‘blank’ at times – for example, when trying to remember a PIN, finding the right word, or needing to read the same page of a book over and over. Some people describe these experiences as a ‘brain fog’ reflecting a sense of mental sluggishness and confusion.

It is common for people with FCD to have chronic pain, mental ill health, or disrupted sleep. They may also have long-term physical health conditions. These can all cause fatigue or mental distraction, which in turn worsens problems with memory and attention.

Some people with FCD become very worried that they have dementia. They may see stories about people living with young-onset dementia and worry that they have the same condition. This makes them stop trusting their memory and rely more on other people or memory aids. This causes a ‘vicious cycle’ in which they gradually use their memory less and less.

Who gets functional cognitive disorder?

Anyone can develop FCD. As with other types of dementia, it tends to affect more women than men and mostly people aged between 45–65. This is around around the same age as most people with young-onset dementia.

People with FCD often have a history of long-term mental and physical ill health, such as anxiety, depression, chronic pain or fatigue. Sometimes a recent event can trigger the onset of FCD, such as a mild brain injury, a viral illness, or a traumatic event. Negative early life experiences, such as childhood abuse or neglect, are also known to increase risk.

What if I’m not confident now about my dementia diagnosis?

A few people given a diagnosis of dementia will find that their symptoms don’t get worse over several years. In general, the longer they stay the same without getting worse, the greater the chances that a person doesn’t have dementia.

Uncertainty about a dementia diagnosis can be distressing. Even considering the possibility of a misdiagnosis can raise many difficult questions, such as:

• Are you happy living with your current dementia diagnosis?
• Are you prepared to go through another set of tests and possibly scans?
• If it’s not dementia, how might you feel about everything you’ve been through?
• What might some people think if you’ve been saying you have dementia and then it turns out you didn’t?
• Will you and those close to you feel let down if your diagnosis still comes back as dementia?

Everyone is different and some people will choose not to seek any changes to their diagnosis of dementia. However, if you’re unhappy with your current diagnosis, speak to your GP – perhaps during an annual review. You can ask to be referred back to your local memory service, preferably to the service that made your original diagnosis.

Treatment and support for functional cognitive disorder

Just knowing the real cause of their problems can help a person with FCD to start to feel better.

Treatment for disrupted sleep, pain, anxiety and depression can all help. The GP will also review the medications someone is taking. 

Useful resources about FCD

The Memory Handbook includes useful practical tips for people who are struggling with their memory. 

There is also a specialist FCD website with a factsheet about FCD, which has been produced by experts on the condition.