While we try our best to provide general guidance on how abilities may change during the course of bvFTD, it is important to bear in mind that not everyone will experience the same symptoms or progress at the same rate.
You may have also reached this page because you are affected by a diagnosis of primary progressive aphasia (PPA) or, more specifically, a diagnosis of either semantic dementia (SD) or progressive nonfluent aphasia (PNFA). These dementias affect speech and language and are also forms of frontotemporal dementia (FTD).
If you need information and advice specifically related to these language forms of FTD, please visit our PPA page. More information on the different forms of FTD can also be found on the FTD Talk website.
Below we have outlined some of the early symptoms commonly associated with bvFTD as well as available support.
Early symptoms
Behavioural variant FTD (bvFTD)
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. These symptoms may come on very slowly and not be noticed at first. This may include:
- uncharacteristic behaviour resulting from a loss of inhibitions or increased extroversion (such as talking to strangers, making inappropriate remarks in public)
- reduced interest and withdrawal from social activities
- a loss of empathy (for example being rude, impatient or aggressive)
- changes in sexual behaviour (such as either more/less or inappropriate interest)
- being more easily distracted
- developing fixed routines or becoming obsessive about things and objects (for example ‘clock watching’ or hoarding objects)
- changes in food preferences (such as developing a sweet tooth, craving unusual foods)
- changes in appetite (such as overeating or drinking excessive amounts of alcohol)
- decreased amount of speech or repeating oneself
- a lack of insight (including being unaware of the true extent of the problems)
In the early stages of bvFTD people may find that their memory remains intact. However, people might have difficulties with organisation 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.
There are many strategies that people living with bvFTD have found to be helpful in managing their symptoms. You can learn more about these on our Living with FTD page.
Community support
We run an FTD Support Group which includes support for all those affected by all forms of FTD. This includes bvFTD, but also the language forms of FTD such as progressive nonfluent aphasia (PNFA), and semantic dementia (SD). Meetings provide an opportunity to meet others in similar situations as well as a range of professionals to get advice and support. Meetings are open to people with a diagnosis, carers, family and friends. Information on upcoming meetings can be found on our Meetings page.
As the symptoms of bvFTD can vary from person to person, it may be hard for people to receive the correct diagnosis. This can be frustrating and distressing for both them and those close to them. By increasing awareness and understanding of bvFTD, we hope to ensure that healthcare professionals and communities are better equipped to support people affected by a diagnosis. Help us by sharing your stories and contacting us at contact@raredementiasupport.org.
