Information
Memory loss but not dementia: functional cognitive disorder (FCD)
Researchers have studied people being assessed for problems with their thinking and memory. Recent figures suggest that, of people going to a memory clinic with such symptoms, as many as one in four don’t have dementia. Instead, these difficulties are caused by functional cognitive disorder.
What is functional cognitive disorder?
Functional cognitive disorder (FCD) is an under-recognised condition that is different from dementia.
In FCD, cognitive difficulties with memory and thinking – particularly when the person can’t maintain attention – are down to a problem with how the brain is working, rather than to loss of brain cells.
FCD is different from diseases like Alzheimer’s in which brain tissue is permanently damaged. Although the cause of their symptoms is very different, people with FCD may be just as troubled by memory problems as people with dementia.
In FCD, memory problems may stay the same over time, or come and go, or even get better.
Unlike dementia, FCD does not generally get steadily worse over a period of years.
FCD only rarely leads to the worsening symptoms seen as dementia progresses and the severe difficulties experienced in late-stage dementia.
What can cause problems with memory and thinking?
A lot of people have cognitive problems, sometimes starting from middle age. For example, they might frequently misplace items, lose track of what they are doing, or not be able to follow the thread of a conversation.
Lots of things can cause symptoms like this. They include:
- anxiety
- depression
- early-stage Alzheimer’s disease or vascular dementia
- functional cognitive disorder (FCD)
- mild brain injury (concussion)
- vitamin and thyroid deficiencies.
If you’re worried about your memory or thinking, call our support line on 0333 150 3456 or visit your GP. The doctor will talk to you about your concerns and arrange for further tests if necessary, most likely at a memory clinic.
Is diagnosis of the cause of memory loss always accurate?
If you have dementia, an accurate diagnosis is key to getting the support to live well. If you have problems with memory or thinking, it can turn out this is not because of dementia. In this case, it's equally important for the cause to be found so you can be given the right treatment and advice.
When symptoms are relatively mild, it can be difficult to make a firm diagnosis even with a brain scan. This means there’s a chance that a few people will be discharged from a memory clinic after being told that nothing is wrong, even though they are still badly affected. This can leave the person – who may actually have FCD – living with a lot of uncertainty but little support.
For some people found to have mild cognitive impairment (MCI), the more specific diagnosis of FCD will give them an explanation for their symptoms, which rules out physical brain disease (i.e. is not a ‘pre-dementia’ condition).
A small number of people will be given a diagnosis of early dementia but later be found to have FCD.
What are the symptoms of functional cognitive disorder?
A person with FCD is likely to have all the symptoms above. They might also go ‘blank’ at times, for example when trying to remember a PIN, or need to read the same page of a book over and over. Many people with FCD have to use a lot more effort to concentrate and remember things, which itself is tiring.
Memory difficulties in FCD happen when the brain has reduced attention to stay focussed on a task. We all have a limited capacity for attention – think how hard it is to focus on several things at once. So anything that detracts from our attention lowers our ability to learn and remember new information.
Some people with FCD become very worried that they have dementia so that they stop trusting their memory, causing a ‘vicious cycle’ and using up a lot of attention.
Some people have physical symptoms, chronic pain or disrupted sleep – which all cause problems with attention. Others get ‘stuck’ in particular thought patterns.
For some people with anxiety or depression, their cognition can also be badly affected. FCD can happen without depression or anxiety, or sometimes these only partly explain why someone’s symptoms are as bad as they seem. In some cases, symptoms of FCD start after a mild traumatic brain injury (concussion).
How is functional cognitive disorder diagnosed and treated?
A doctor can diagnose FCD from talking to someone about their problems, from memory tests and when the person (and others around them) describes their everyday life.
In FCD, memory and thinking work OK at times but not at all at other times. This variability helps doctors make the diagnosis.
Sometimes a person with FCD is more worried about their problems than those around them. Failure of symptoms to get steadily worse is also a feature of FCD, but will become apparent only with time.
Just knowing that their problems are caused by FCD and not dementia 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.
For more practical tips and suggestions on managing FCD, see the resources listed below.
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. A person experiencing this may not have dementia but something else, including FCD.
Feeling uncertain about your dementia diagnosis is complicated. Even the thought that it could be changed will raise a lot of 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?
- 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 not seek to change their diagnosis of dementia. But if you’re unhappy with your current diagnosis, speak to your GP – perhaps at an annual review. You can ask to be referred back to a memory clinic, preferably to the service that made your original diagnosis.
Where can I find out more about functional cognitive disorder?
Useful resources about FCD
- Neurosymptoms.org has an excellent factsheet about FCD
- Head Injury Symptoms has information about mild head injury
- The memory handbook includes useful practical tips.
Mouse
saysChristina
saysHi Christina, we're very sorry to hear this. It must be a worrying time. But please know you're not alone and we're here to support you.
You may benefit from calling our support line on 0333 150 3456. Our trained advisors will be able to listen and provide emotional support. They may also be able to suggest or direct you towards further information that's specific to your situation. More details of the support line (including opening hours) are available here: https://www.alzheimers.org.uk/dementia-connect-support-line
In the meantime, our page on coping with memory loss may be helpful: https://www.alzheimers.org.uk/get-support/staying-independent/coping-with-memory-loss
Our page on memory aids and tools may also be useful: https://www.alzheimers.org.uk/get-support/staying-independent/memory-aids-and-tools
We hope this helps for now, Christina.
Angela
saysAnonymous
saysHi Angela,
We're really sorry to hear this. But you aren't alone, and we are here for you.
Please call our Dementia Connect support line on 0333 150 3456 to talk to one of our dementia advisers. They will listen to your situation and provide advice and support to help you. More details of the support line (including opening hours) are available here: https://www.alzheimers.org.uk/dementia-connect-support-line
We hope this is helpful, Angela. Please do call our support line.
Alzheimer's Society blog team
Antonia
saysAnonymous
saysHi Antonia, we are sorry to hear about your difficult situation.
If you need support, please call our Dementia Connect support line on 0333 150 3456. They will listen to your situation and provide you with advice. (More information, including opening times, can be found at https://www.alzheimers.org.uk/dementia-connect-support-line).
Our page on coping with memory loss (https://www.alzheimers.org.uk/get-support/staying-independent/coping-with-memory-loss) includes information about common types of memory loss, our tips to help you cope and manage your feelings.
To understand more about potential causes of memory loss, we have some information online (https://www.alzheimers.org.uk/about-dementia/symptoms-and-diagnosis/symptoms/why-is-my-memory-bad) but speaking to your GP about a referral to a local memory service, if you’ve not been already, might be more suitable.
Jennifer Threlfall
saysHazel Williams
saysHave been tested 3 times for dementia and all said no. Now looking at FCD after weekend of blunders at chatting . What’s recommended to help bad memory? Widow and lived alone for years but great family. Please help!
Anonymous
saysHello, Hazel. Thank you for getting in touch. This must be a worrying time for you; we’re relieved to hear you have great family support.
First and foremost, we recommend speaking with one of our expert advisers to discuss your concerns. They will listen to your situation and provide you with advice and support. Please call our Dementia Connect support line on 0333 150 3456. (More information, including opening times, can be found at https://www.alzheimers.org.uk/dementia-connect-support-line)
In the meantime, we have dementia information available online and printed resources that can be sent to you in the post. You can order these through a webform (https://www.alzheimers.org.uk/form/order-free-publications) or you can talk to the adviser when you call about which publications might be of interest.
Our practical guide, The memory handbook, is for people with mild memory problems. It should provide ideas and strategies to help you. You can read and download a digital copy (72-page PDF: https://www.alzheimers.org.uk/sites/default/files/2020-03/The%20memory%…) or you can receive a printed copy to your door (https://www.alzheimers.org.uk/form/order-free-publications).
Our page on coping with memory loss (https://www.alzheimers.org.uk/get-support/staying-independent/coping-wi…) includes information about common types of memory loss, our tips to help you cope and manage your feelings.
To understand more about potential causes of memory loss, we have some information online (https://www.alzheimers.org.uk/about-dementia/symptoms-and-diagnosis/sym…) but speaking to your GP about a referral to a local memory service, if you’ve not been already, might be more suitable. If you have been, then please do mention this to a Dementia Adviser when you call (0333 150 3456).
We hope this helps for now, Hazel.
Alzheimer’s Society blog team
Ian Ratcliffe
saysFor many months I've had disruted sleep patterns, constantly repeating names or phrases over again. After having covid, my thought process has really declined, I forget words and what I'm doing, keep forgetting how to do simple things, I get frustrated and angry with myself, my main concern was that my mum started with alzheimers in her 50s, so been panicking. After a few incidents over the weekend, I decided to Speak with my GP today, who is certain that it's FCD, which has eased some anxiety, have to have blood tests to rule other stuff out , but am certainly glad I sought help today
John Medders
saysMy wife of 49 years can not think of words when she is talking sometimes they are just not there .She may not remember our grandkids names at times and then at times she will .This problem makes her want to stay at home and not go out and I am just worried about her. What do I do ?
Anonymous
saysHi John,
We're sorry to hear this, it sounds like you are going through a very worrying time.
Please know that we are here for you. If you are worried about your wife's memory, we'd recommend that you contact your GP or talk to us today.
You can call our support line on 0333 150 3456 and speak to one of our trained advisers. They will listen to you to get more information about your situation, and offer advice and support. You can find more details about the support line (including opening hours) here: https://www.alzheimers.org.uk/dementia-connect-support-line
We hope this helps, John. Remember to call our support line if you need someone to talk to.
Alzheimer's Society blog team
l
saysLiz S
saysIn my opinion, it's a shame that both prescription drugs (ADRs or withdrawal effects) and non-prescription remedies and drugs aren't included in the above list of possible causes of cognitive problems. Medications are briefly mentioned in the section about diagnosis and treatment but I'd have thought that they should be the first thing to consider when someone is experiencing such difficulties and should therefore have been top of that list.
Simon Wheeler, Knowledge Officer
saysHi Liz,
You're absolutely right to suggest that prescription medicines (and even some available over-the-counter or herbal/complementary medicines) can sometimes affect a person's memory and thinking. These include 'anticholinergic' drugs that are sometimes used to treat urinary problems, depression, seizures, allergies, or a range of other health issues. Often it's not necessarily one particular drug but the combined effect of several drugs that can cause problems.
If you're concerned about the possible effects of a particular medicine on your memory or thinking, take a look at the leaflet that comes with the medicine and see if 'confusion', 'drowsiness', or 'concentration impaired' are listed among the common side effects. If so, you might want to discuss taking an alternative medicine with your GP or prescriber - particularly if the person taking the medicine is older, frail, has pre-existing cognitive impairment, or takes lots of other medicines already.
FCD is not thought to be caused by these kinds of drug side effects though. Of course, a drug that causes sedation or confusion won't help if a person has FCD but the condition is generally thought to be more related to chronic problems with processing thoughts - particularly thoughts about how well one is able to think and function. Typically a person experiencing confusion as a side effect of a drug will get lower scores on cognitive tests (like MMSE, MoCA or ACE-III), whereas a person with FCD will tend to show normal scores on these objective tests yet still struggle to function normally in everyday life.
Gail Barry
saysDad started Alzheimer's just before his 60th bithday, when I was approaching 60 I suddenly started losing words, couldn't think them up or spell them, couldn't write a simple essay, letter as I couldn't think out the argument in it,I thought I was starting Alzheimer's, but it lifted after a few months. Two years later I was diagnosed with functional neuo disorder and that caused the cognitive problems
Ginny Dadd
saysThank you for the succinct description of FCD, and the links to other articles. Very helpful when searching for quality information.