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Frontotemporal Dementia

Frontotemporal Dementia

Frontotemporal dementia (FTD) is a group of dementias which mainly affect the frontal and temporal lobes of the brain. These are the areas of the brain that control personality and behaviour or language and speech abilities. FTD can affect both men and women, and usually starts when people are in their 40s, 50s or 60s. However, it can also affect older people and sometimes even younger people.

FTD is commonly subdivided into two types:

  1. Behavioural variant FTD (bvFTD), which mainly affects behaviour and personality.
  2. Primary progressive aphasia (PPA), a group of dementias mainly causing a loss of speech and language abilities. These include progressive nonfluent aphasia (PNFA), semantic dementia (SD) and logopenic aphasia.

There are also other FTD disorders where the primary symptoms involve changes in movement. These are corticobasal syndrome (CBS) and progressive supranuclear palsy (PSP) (also known as Richardson syndrome). Sometimes, an individual with FTD can also develop amyotrophic lateral sclerosis (ALS).

In around 30-40% of cases, a person with FTD may have a family history of the condition in which a parent or sibling has been affected. In these cases, the cause of FTD is likely to be genetic and the type of FTD is often referred to as familial FTD. However, it is important to note that most cases of FTD do not have a genetic basis, that is, they are not familial. For more information, visit our page on Familial FTD.

Living with bvFTD: Matt and Lisa’s Story (Part 1)
Living with bvFTD: Matt and Lisa’s Story (Part 2)

Behavioural variant FTD

Behavioural variant frontotemporal dementia (bvFTD), sometimes referred to as frontotemporal dementia or Pick’s disease, is caused by the loss of brain cells in the front of the brain, but the processes that lead to the loss of these brain cells are varied and not well understood. What we do know is that it is caused by an abnormal build-up of certain proteins in the brain cells, but we do not yet know why or how this happens.

The first symptom of bvFTD is usually a change in personality or behaviour which is out of character for the person affected. There are relatively few memory problems in the early stages of the condition. People with bvFTD typically are not aware that their behaviour and personality has changed or show concern for how their behaviour affects those around them. Some other symptoms of bvFTD include:

  • uncharacteristic behaviour resulting from a loss of inhibitions or increased extroversion (e.g., talking to strangers, making inappropriate remarks in public)
  • reduced interest or motivation and withdrawal from social activities
  • a loss of empathy (e.g., being rude, impatient or aggressive)
  • changes in sexual behaviour (e.g., more/less or inappropriate interest)
  • being more easily distracted
  • developing fixed routines or becoming obsessive about things and objects (e.g., ‘clock watching’ or hoarding objects)
  • changes in food preferences (e.g., developing a sweet tooth, craving unusual foods)
  • changes in appetite (e.g., overeating or drinking excessive amounts of alcohol)
  • decreased amount of speech or repeating oneself
  • a lack of insight (being unaware of changes in their personality and behaviour or the true extent of these problems including on others around them)

In the early stages of bvFTD, people may find that their memory remains intact. However, people might have difficulties with organization and concentration, which can feel as though they are experiencing memory problems. Therefore, a problem with memory is often a symptom described by people living with bvFTD.

Getting a diagnosis of bvFTD can be challenging because it is a rare condition. Also, some of the symptoms of bvFTD can be confused with other conditions, for example, psychiatric disorders (e.g., depression), Alzheimer’s disease or other dementias (e.g., vascular or Lewy body dementia). As a result, many people describe long and frustrating journeys through different medical professionals before receiving a diagnosis and sometimes they may have been misdiagnosed with another condition.

As with other types of dementia, there is currently no cure for bvFTD. The rate of progression will also vary by individual however, because the condition is progressive, the symptoms cannot be slowed and will eventually become more pronounced over time. Some medications can be used to manage symptoms such as apathy or agitation, though there may be side effects. In a small number of people, FTD can overlap with one of several diseases that affect movement of the body such as progressive supranuclear palsy (PSP) and corticobasal syndrome (CBS). In these cases, treatments specific to these conditions may be prescribed. Referral to a mental health professional to manage symptoms of depression or anxiety may also be helpful. Discuss with your doctor the treatment options that may be available to you to manage your symptoms. Apart from medical treatments, there are many behavioural strategies and interventions that people living with bvFTD as well as their family and friends can adopt to manage symptoms and maintain their personal and occupational functioning.

Corticobasal syndrome

Corticobasal syndrome (CBS) is categorized as a type of frontotemporal dementia because of the parts of the brain that are affected, which are the frontal and temporal lobes. These are the areas of the brain that control personality and behaviour or language and speech abilities. In corticobasal syndrome, the primary symptom is movement problems like those often seen in people with Parkinson’s disease. For example, muscle stiffness in an arm or leg or both, falling, and difficulty performing simple actions like carrying a plate or writing. As the disease progresses, people with CBS also experience language difficulties and have symptoms similar to individuals with bvFTD or PPA. You can learn more about CBS on the Rare Diseases (NORD) website or the Association for Frontotemporal Degeneration.

Sore wrist

Progressive supranuclear palsy

Progressive supranuclear palsy (PSP) is another FTD disorder that, like in corticobasal syndrome, the first symptoms to develop affect movement. These disorders are sometimes called atypical Parkinsonism because of movement difficulties. These difficulties include problems with walking or balance, with voluntary eye movement (e.g., moving eyes downward/vertically, called ‘supranuclear gaze palsy’), rigidity and problems with swallowing and eating. As the disease progresses, people with PSP also experience language difficulties and have symptoms similar to individuals with bvFTD or PPA.

If you are wondering if you should contact your primary health care provider regarding a diagnosis, visit:

For information on living with rare dementia, visit: