Like many forms of dementia, frontotemporal dementia starts slowly, with subtle symptoms, and then gradually worsens over time. Unlike most other forms of dementia, frontotemporal dementia does not immediately present with memory problems, and often strikes early, normally affecting people aged from forty to sixty (but can onset as early as the patient's twenties, or as late as their eighties). This can mean that the behavioral and neurological effects of the condition are misdiagnosed or missed altogether, in the initial stages.
The following are the seven stages of frontotemporal dementia:
No symptoms. The disease has not yet progressed far enough to cause any symptoms, and patients would present as 'normal' and completely healthy.
Mild symptoms begin to present themselves. As stated above, with other types of dementia the first symptoms are memory-related, but this is not the case with frontotemporal dementia patients. These patients will present with a sight change in social interactions and personality. These symptoms will be so subtle at this point, that a diagnosis may be missed – and even the need for a diagnosis may be overlooked! If symptoms are noticed, they might be chalked up to the patient being stressed, or having a bad day, and being grumpier and less kindly than usual.
This is usually the stage where alarm bells begin to ring, featuring some cognitive issues, a marked deterioration in social skills and issues including changes to language use and the intellect. These changes, while still relatively subtle, are marked enough to draw the notice and concern of colleagues and family members. Problems begin to occur at this point, with functional and working memory and social skills, along with obsessive behaviors which can include binge eating, for example, overeating carbohydrates or sugars, or snatching food from others.
By now it is clear to all that there is an issue with the patient. The previous almost unremarkable symptoms are now becoming pronounced, and the patient will be having difficulty with regular social interactions and will struggle with cognitive puzzles and intellectual issues. Their language may regress, with the patient using less words than before, and struggling to speak in some instances. If a diagnosis is made at this stage, it is considered an 'early onset' diagnosis, which means it has been caught early, and thus might benefit from some treatments which may not work in later stages. If a doctor is consulted, it is likely that an accurate diagnosis will be made as symptoms will be clear and recognizable as such, rather than being mistaken for personality quirks.
By stage five, the 'mid-point' of the disease's progression, the patient is clearly in need of medical intervention, often requiring the services of a carer or nurse some or all of the time. Social skills are markedly poor, intellectual and cognitive problems are commonplace and language and social skills are in decline. Emotional non-reactivity is another symptom that presents, and the patient may not react appropriately to news that should trigger a strong emotional response, whether happy or sad. Until now, the disease has been progressing relatively slowly, but will now accelerate, with degeneration occurring rapidly and markedly.
Severe cognitive issues, loss of bodily control, including incontinence, and a decline in moral judgement all present at this stage. Poor impulse control is another symptom of frontotemporal dementia and this means that patients often need to be monitored around the clock to prevent them from behaving in a manner that could be dangerous to themselves and others. Speech issues can occur, with pronunciation problems presenting more and more commonly. These symptoms can be upsetting to the patient who may withdraw even more from society, rejecting overtures from family, friends and medical professionals.
This is the hardest stage of any type of dementia for both the patient and their loved ones. Patients can become withdrawn and struggle to communicate. They can be very difficult to handle, refusing to cooperate with carers and becoming very distressed over minor upsets. Help will be needed for almost everything from eating and drinking, to dressing and bathing. Eventually social skills vanish entirely, along with motor and verbal abilities.