Frontotemporal dementia (FTD) is an uncommon type of dementia caused by changes in the brain’s frontal lobe (behind the forehead) and temporal lobe (next to the ear).
Journey with us as we learn what this rare condition is.
What is Frontotemporal Dementia?
Symptoms of dementia depend on where in the brain changes happen. In FTD, changes happen in the frontal and temporal lobes.
The frontal and temporal lobes are at the front and sides of the brain respectively.
Damage or shrinkage of the nerve cells in the frontal and temporal lobes can result in symptoms specific to FTD.
Frontal lobe damage can affect executive functions like reasoning, working memory, decision making, attention, and behavioural inhibition.
Temporal lobe damage can affect functions like recognition of visual objects, reception and processing of sound and language, and speaking.
How are FTD and age related?
Compared to other kinds of dementia like Alzheimer’s or vascular dementia, which are much more common, FTD tends to develop at younger ages.
The onset of FTD is more common in persons aged 45-65 compared to persons younger or older than this age range. The mean age of diagnosis of FTD amongst those surveyed in a 2013 study of FTD in Southeast Asia was 58.9 years. 1
This means that FTD is more commonly seen in persons living with young-onset dementia than persons living with dementia over 65 years old.
Amongst persons living with dementia seen at Singapore’s National Neuroscience Institute (NNI) from 2013 to 2017, 17% of persons with YOD had FTD, compared to a much smaller 7% of persons who experienced the onset of FTD at or after age 65.2
Data from National Neuroscience Institute (NNI) describing persons living with dementia seen at NNI from 2013 to 2017.
How common is FTD?
FTD is a relatively uncommon form of dementia.
Estimates on how many per cent of dementia diagnoses are FTD diagnoses vary, and range from 2.6 to 5% 3, 4 of all cases of dementia.
In the United States, the number of people in the general population who develop FTD every year is estimated to be about 15 to 22 persons for every 100,000 people.3, 5
Risks
The only known risk factor for FTD is a family history of the condition. It is estimated that FTD is hereditary in every one out of three cases.6
Main symptoms of FTD
Brain changes cause symptoms that may include:
- Behavioural and personality changes, such as difficulties with empathising with others, behaving appropriately in social situations, and compulsive and repetitive behaviours
- Language and speech issues
- Issues with executive functioning skills, e.g. planning, judgment, reasoning, and selective attention
- Issues with recognising objects and people
- Problems with movement (towards the later stages of FTD)
- Problems with memory (especially as FTD progresses)
In a 2013 study of persons with FTD in Southeast Asia, the most common symptoms of all persons with FTD surveyed, who were all already no longer working or have retired, were executive function impairment, and issues with information-processing abilities (i.e. working memory issues). Common symptoms for study participants with behavioural variant FTD were loss of insight and loss of social awareness; a high proportion of the participants with language variant FTD experienced difficulty in finding words.1
Types of FTD
The symptoms of FTD, and their order of development as dementia progresses, depend on the type of FTD a person develops.
There are three main types of FTD:
- Behavioural Variant Frontotemporal Dementia (bvFTD)
- Primary Progressive Aphasia (PPA)
- Frontotemporal dementia associated with movement disorders
Behavioural Variant Frontotemporal Dementia (bvFTD)
The behavioural variant of frontotemporal dementia, or bvFTD, is the most common kind of FTD. It was previously known as Pick’s disease after a Czechoslovakian doctor who described the condition in 1892.
One of the more common symptoms of bvFTD is the development of behavioural changes which tend to show in the earlier stages of the condition. This contrasts with other forms of dementia, such as Alzheimer’s, where behavioural changes often happen towards the later stages of dementia.
Primary Progressive Aphasia (PPA)
Primary progressive aphasia is the second most common form of FTD, and it is characterised by progressive language impairment. The word aphasia means difficulties with speech and language.
Frontotemporal Dementia Associated with Movement Disorders
FTD may sometimes happen together with movement disorders caused by neurodegeneration, although people with movement disorders do not always develop FTD.
Some movement disorders that are often associated with FTD include:
- Amyotrophic lateral sclerosis (ALS), or Lou Gehrig’s Disease
- Corticobasal syndrome (CBS)
- Progressive supranuclear palsy (PSP)
Symptoms and stages
In the earlier stages of FTD, there may be differences in symptoms between FTD and other kinds of dementia. For example, persons with Alzheimer’s tend to experience memory loss more prominently than those with FTD in the earlier stages; persons with FTD may tend to show behavioural changes or experience language issues more than persons with Alzheimer’s.
In these earlier stages, the differences between FTD subtypes are also more obvious. For example, persons with bvFTD may show behavioural changes while persons with PPA may not, and persons with PPA may have language difficulties while persons with bvFTD may not.
However, as the condition progresses, and as brain changes occur in more parts in the brain, the symptoms experienced by persons with different FTD subtypes widen in scope and overlap with each other.
Symptoms also become similar to those of other kinds of dementia, like Alzheimer’s. For example, memory loss and behavioural changes become more common towards the later stages of most kinds of dementia.
You may find more information about the common symptoms of dementia here.
Diagnosis
The diagnosis process for FTD may be lengthy due to a few reasons:
- Other conditions: Symptoms of FTD can overlap with those of other mental health or neurological conditions, including depression, obsessive-compulsive disorder, psychosis, or even a stroke.
- Type of dementia: FTD symptoms can also be difficult to tell apart from those of other kinds of dementia such as Alzheimer’s.
- Age: FTD may develop at a younger age than most cases of dementia; physicians and professionals may check for other possible conditions that may have similar symptoms before testing for FTD.
Support for families and caregivers
FTD can be especially difficult for families and caregivers because of the symptoms specific to FTD, such as prominent behavioural changes in behavioural-variant FTD, or communication-related issues in primary progressive aphasia.
Families living with a person with FTD, and the persons with FTD themselves, may also encounter challenges particular to young-onset dementia, such as work or income changes, should the persons living with dementia have dependents and would be unable to perform the same work responsibilities as their condition progresses, or if caregivers take time off work to care for their loved ones. In addition, dependents and loved ones will need to navigate their changing relationship with the person with FTD.
Getting guidance and support is important for persons with FTD and their loved ones.
If you are family member of a person living with dementia, or if you are someone taking care of them: caring for yourself, reaching out for support, and connecting with peers can go a long way for your wellbeing. For more information on support groups or services, click here.
Caring for persons in our community who may have FTD
Persons with FTD who live amongst us, especially those who are younger, are often not understood by people around them because public awareness and understanding of FTD tends to be relatively low.
These persons can be at a higher risk for social isolation due to the lack of understanding of their symptoms, which can include behaviours that may come across as difficult, or communication impairments like aphasia.
At the same time, these persons need to be supported, understood, included, and treated as individuals with their own stories.
Having said that, family members and caregivers of persons with FTD also need support and understanding, especially with the unique journey that comes with living with a person with FTD.
If you know someone with FTD, or a caregiver or family member of a person with FTD, be sure to continue extending support, friendship, and a listening ear to them in the ways you can.
How to get help
If you or someone you know may have FTD and needs support or information, contact a Community Outreach Team (CREST) to find out more about how to get support, or call Dementia Singapore’s helpline at 6377 0700.
Tell us how we can improve?
- Tan, Y. L., Ng, A., & Kandiah, N. (2013). Frontotemporal dementia in southeast Asia: a comparative study. Dementia and Geriatric Cognitive Disorders Extra, 3(1), 1-9.
- Chiew, H. J., Dr (2021, July 5). Young-Onset Dementia: Improving Outcomes With Early Recognition at Primary Care. SingHealth. Retrieved May 15, 2023, from https://www.singhealth.com.sg/news/defining-med/Young-Onset-Dementia
- Leroy, M., Bertoux, M., Skrobala, E., Mode, E., Adnet-Bonte, C., Le Ber, I., … & Lebouvier, T. (2021). Characteristics and progression of patients with frontotemporal dementia in a regional memory clinic network. Alzheimer’s Research & Therapy, 13, 1-11.
- Alzheimer’s Research UK (n.d.). Frontotemporal Dementia. Retrieved June 13, 2023, from https://www.alzheimersresearchuk.org/dementia-information/types-of-dementia/frontotemporal-dementia/
- Knopman, D. S., & Roberts, R. O. (2011). Estimating the number of persons with frontotemporal lobar degeneration in the US population. Journal of Molecular Neuroscience, 45, 330-335.
- Alzheimer’s Association. (2023). Frontotemporal dementia (FTD). In Alzheimer’s Association. Retrieved June 12, 2023, from https://www.alz.org/media/documents/alzheimers-dementia-frontotemporal-dementia-ts.pdf