Common questions
- 01
The diagnosis is usually made by neurologists, psychiatrists, or neuropsychologists. They'll ask you about how your cognitive symptoms, your thinking, how the symptoms started, and how they affect your daily life. They will also ask about your past medical history and other health problems at present. They might also do physical exams, ask for cognitive tests and eventually ask for brain scans like CT scans, MRI scans. Your approach to these tests, not just your scores, is important. They will also explain the meaning of the findings, as some changes are incidental and expected with aging. For instance, a brain can look normal but still have problems, or show age-related changes without these being responsible for your symptoms. It is important to know that scans only show what the brain looks like, but do not show well how the brain is working, so you might still have cognitive symptoms with 'normal' scans. Doctors won't rely on just one piece of information. They look at everything together - the story from you and other people who know you about how and when the symptoms started is crucial to understand your diagnosis. Importantly, your symptoms are real and distressing, but there is nothing you have done wrong.
- 02
Feeling uncertain about your diagnosis is complicated. You might still be worrying you have a dementia. A few people will be discharged from a memory clinic after being told that nothing is wrong, 'its all made up', even though they are still badly affected. This can leave the person living with a lot of uncertainty and little support.. That is why we created this treatment with the best available evidence we know so far.
If you have problems with memory or thinking, it can turn out this is not because of dementia. In this case, it's important for a functional cognitive disorder to be diagnosed to be found so you can be given the right treatment and advice.
If you're unsure, talk to your doctor and discuss the diagnosis together. Even if your doctor might be able to confidently make a diagnosis of functional cognitive disorder, in other cases there will be uncertainty, and for this only the time will tell. It is important you trust your diagnosis and your doctor, so the self.management strategies proposed in this app work. Even if you are in doubt, consider listening to this as another voice and explanation who might work. You will only know if you try.
- 03
Everyone is different. Functional cognitive disorder occurs when your attention is partially shut down, so it is deviated from the tasks and focused on the symptoms. Your brain is not working well, even though there is no damage or lesions in the brain. Multiple factors together contribute to the symptoms, like a mixing cocktail, and interfere with information processing. Doctors talk about vulnerabilities, triggers and maintaining factors, including the response you developed to the symptoms, all those may impede your recovery. Also, your brain and your mind are always communicating, so anything that is happening in the body (for example, pain, fatigue, other neurological symptoms) will also manifest with cognitive symptoms. Having other ilnesses, an injury, and certain medications, can affect your memory and your thinking abilities. Stress, anxiety and low mood can be important in certain cases but do not solely explain the diagnosis.
You can check the video in this website 'What is a functional cognitive disorder?" to learn more and complete the module 2 in the App. By learning this information you can start improving your cognitive symptoms.
- 04
It is likely that you have seen other doctors prior to being referred to this treatment. Sometimes doctors use other terminologies like ‘subjective cognitive impairment or decline’, ‘mild cognitive impairment’, ‘worried well’ or ‘anxiety about memory’. This occurs because until recently there was little consensus on how to classify functional cognitive disorders, and there wasn’t a treatment available. Regardless of the terminology used, you may find benefit from completing this programme as the mechanisms responsible for your symptoms will be common to all these terminologies.
It is important that you know that all these names are different from 'dementia' which corresponds to irreversible damage happening in the brain that significantly affects people's lives. Often patients with dementia have persistent symptoms and are not aware of their symptoms. On the contrary, patients with functional cognitive symptoms are aware of their symptoms, develop worries and fear of failing which can be quite distressing. Importantly, everyone experiences memory lapses and decline in memory and processing speed after middle age (even in their 30s), in various degrees.
- 05
Fluctuations in your brain function over time are completely normal. At times, it will be more difficult to maintain attention, remember appointments and manage problems of your everyday life. There is nothing alarming about it, as long as you are aware that you might need to rest, sleep and relax to recover. This might occur particularly in periods of major stress, if you are sick, for example with a cold, which require extra rest and care, or after a period you haven't slept well. Often, putting too much pressure on the brain makes things harder.
For example, you probably experienced that when you want to remember a word, the harder you try the worse it gets. It seems impossible to retrieve that name. Then you go away and the name comes back later. So, in these situations, don't panic. Leave it for later. You can get more strategies to help you function better in your daily life in module 5 and tips to take care of your health and stress in modules 6 and 7.
- 06
Cognitive difficulties, concentration problems, losing track during tasks and problems gathering words, are invisible, and people around you may find it difficult to understand why you are not acting as before and your memory is affected. Maybe others have started to tell you: ‘Why did you forget our to do this again’ or '‘You just need to relax’. It is likely that these comments made you feel even more ashamed and frustrated,
Those people that truly like you will benefit and understand from knowing at the moment you have problems with your memory and concentration. You can tell them about this treatment so they can have more information (for example in the external link resources and similar patient stories). If you tell them that trying hard to say something when your brain seems blocked, and comments that make you feel more worried and ashamed make things worse, that makes it easier for other people to know hot react and understand why you can't right now. Because you look the same on the outside, others will still have an expectation that you can do things as you used to. For example, at work, you might start to implement measures to reduce your distractions, you might need to take breaks to give your brain a rest, and you might have to delegate or do tasks at once, without wanting to do it all at the same time. If your colleagues know it, it will be easier for them to adjust (and maybe implement the same for them!).
Telling others besides getting you support might also be helpful for people to share their experiences with you. Did you know that more than half of young students report forgetting things regularly? Or that a third of the population don't know where their keys are at least once a week? Sharing experiences helps you feel that you are not alone!
It is important for people around you to know that it is natural to have cognitive difficulties for a period of time. For example, everyone understands that when we have flu or are tired we can't perform at 'our best', but it is hard to understand that there are many other things that can affect how the brain functions.
Finally, even if others think you are being lazy or thinking you are 'making things up' but this is your own journey and you are doing this for yourself.
- 07
Currently, there aren't medications approved for functional cognitive symptoms. The strategies known to help patients are the ones taught in the App (see patient stories too). However, there are many causes of memory problems that need to be excluded including vitamin deficiencies (especially vitamin B12 and D), thyroid disorders, infections or bad control of diabetes, colesterol or hypertension. Other medical conditions, neurological and mental disorders like anxiety and depression if not controlled can affect your thinking. Suffering from pain and fatigue also affect your thinking, so you might want to receive treatment for these symptoms. Finally, you might need to improve your sleep, increase your physical activity and avoid alcohol and other substances, All this is within your control, and helps more than any medication.
Finally, know that a few medications that can impair memory especially those with anticholinergic effects, antihistamines (for allergies), antipsychotics, and benzodiazepines (sedatives). There is no indication to start treatment for ADHD if you don't have this diagnosis (read below).
- 08
You might still experience difficulties on your daily life.
First, don't expect to be able to notice a change in your symptoms straight away, without practice and work,
It is difficult to change symptoms, thoughts and actions of several years. 'Tuning in' to the present moment and tasks at hand is essential (training attention and relaxation exercises in the App can help you).
You might have resistance to challenge your thoughts - consider plan B offered by your 'ally' voice.
Do not fear uncertainity and assuming responsability for your own inner state.
Do not try to control everything or avoid your thoughts. This will only make things worse. Focusing on your environment, observing your thoughts and not doing anything about it and being able to relax and enjoy the present moment is essential.
Leave a more balanced life, avoiding doing too much on good days and needing to rest your brain for many days after.
With time you can learn what triggers your symptoms and learn when to put the knowledge in practice, avoiding feeling anxious and stressed about situations where your cognitive symptoms might appear.
Remember you are doing your best, don't be too hard on yourself.
- 09
Duration and severity of cognitive symptoms may vary. So far, there aren’t many studies analysing the duration of functional cognitive disorder. Duration and severity are different to everyone. For some, functional cognitive symptoms can be frightening, affect the ability to work and relationships with others; for others cognitive symptoms may be mild and be part of a bigger problem alongside other health problems including fatigue, pain, anxiety or depression. You can read more about this in the App (Modules 2, 6 and 7). Understanding the roots of your symptoms, making changes today in your thoughts and actions, living a more relaxed and balanced life and getting support from friends and family are key factors. Obviously, getting better sleep, taking care of your body and exercise can also help, but no case is like the other.
- 10
ADHD is one of the most common concerns of people struggling with cognitive symptoms. It is important to consult with a healthcare professional and avoid self-diagnosis, because this increases the risk of being exposed to harmful treatments and deprived of others that might help you. ADHD is a neurodevelopmental condition, which means it starts when a normal brain developmental process goes wrong, so symptoms start in childhood. A shorter attention capacity and impulsive behaviors (like yelling and running around) are normal at younger ages. If this does not improve with age, this makes it hard for children to learn in school for example. If a person did not have attention issues since childhood (for example these issues suddenly started in their 30’s or 40's), they do not have ADHD. Symptoms of ADHD can also be very similar to depression and anxiety, so sometimes these can be mislabeled, especially in online tests.
- 11
If you have a close family member with dementia, you may be at a slight increased risk of experiencing memory symptoms at some point in your life. But remember that dementia is very common in old people, and the fact that your relative has it, it does not mean that inevitably it is in your genes or that you will develop it, without any additional factors . Similarly, many people develop memory problems without having any family history. It is not because you worry, fear not being able to do things or worry about the future that your situation changes. Read more about it in module 2.
- 12
If you had to take time off work, or away from your usual activities, keeping your mind and body active are the best strategies you can use. Tasks which require you to concentrate or focus your mind, such as reading or simple mental puzzles, may help to avoid loss of confidence in your memory and concentration. Slowly try to reduce the use of memory notes and calendars, to test your brain capacity - if you don't do it you will never know if your brain is working well. Train your attention and learn self-help strategies with the resources in this App. And if you return after a long break, don’t be too hard on yourself – it can take a while to get back into the swing of things. For example, it can feel strange, you may feel out-of-practice, anxious, and find that you have forgotten how to do things that you used to do regularly on ‘autopilot’ (read module 1). These feelings can lead to further worry that there has been damage to your memory, which will create a vicious cycle - you will never feel prepared if you don't keep trying. Remember that feeling out-of-practice and forgetting things can be expected for anyone taking time away from their normal activities (like after a time without running or riding a bike).
