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PubMed This is a summary of 16 peer-reviewed journal articles Updated
Neurology

Understanding Your FTD Diagnosis: A Guide for Families

At a Glance

Frontotemporal dementia (FTD) is a group of brain disorders affecting personality, behavior, and language, most commonly striking people under age 60. While there is no cure, care teams can manage behavioral symptoms using targeted medications and specialized support strategies.

The journey to a diagnosis of frontotemporal dementia (FTD) is often long, confusing, and exhausting. You may have spent years visiting different specialists, only to be told it was depression, a midlife crisis, or a psychiatric disorder [1][2]. If you are feeling a mix of overwhelming grief and profound relief that the symptoms finally have a name, know that this is a normal reaction to the “diagnostic odyssey” common in FTD [3][4].

Understanding FTD

Frontotemporal dementia (also known as frontotemporal lobar degeneration or FTLD) is a group of brain disorders caused by the progressive degeneration of the frontal lobes (responsible for personality, judgment, and planning) and temporal lobes (responsible for language and emotion) [5][6].

While FTD is less common than Alzheimer’s, it is the most frequent form of dementia for people under age 60 [7][5]. Most cases are diagnosed between the ages of 45 and 64, though symptoms can begin as early as the 20s or as late as the 80s [5]. Because it strikes during the prime of a person’s working life and family-building years, the impact on finances and household dynamics is often significant.

Three Stabilizing Facts

In the wake of a diagnosis, it is natural to feel a “panic spiral.” Focusing on these three foundational facts can help orient your care:

  1. The Behaviors Are the Disease: Changes in personality, social filters, or empathy are caused by biological damage to specific brain regions [8][9]. Your loved one is not “trying” to be difficult; the parts of their brain that regulate behavior are simply no longer functioning correctly.
  2. Symptoms Can Be Managed: While there is currently no cure to stop the progression, care teams can use a combination of medications—such as certain serotonergic antidepressants—and behavioral strategies to manage mood, agitation, and psychiatric symptoms [10].
  3. You Do Not Have to Walk This Alone: Because FTD is a “spectrum” disorder—including the behavioral variant (bvFTD) and primary progressive aphasia (PPA)—management requires a multidisciplinary team [6][11]. Specialist support groups and psychosocial interventions are available to help reduce the high level of burden that FTD caregivers often experience [12][13].

The FTD Spectrum

FTD is not a single disease but a spectrum of related conditions. Identifying the specific variant can help you understand what to expect (learn more in The FTD Spectrum):

Variant Primary Symptoms
Behavioral Variant (bvFTD) Progressive changes in personality, social conduct, and loss of empathy [8][14].
Primary Progressive Aphasia (PPA) Gradual loss of the ability to speak, write, read, or understand language [6][15].
Movement Syndromes Some forms overlap with motor disorders like ALS (Lou Gehrig’s disease) or Parkinson-like movement issues [16].

Navigating the Impact

Research confirms that the emotional weight of FTD is uniquely heavy for caregivers due to the early onset and the nature of the behavioral symptoms [12]. On average, it takes approximately 2 years from the first signs of symptoms to reach a definitive diagnosis, and for many families, the delay is even longer [1].

Current medical guidelines emphasize a personalized approach to care [11]. While the progression varies—with survival ranging from 2 to over 20 years—early engagement with a specialized care team can help you prepare for the road ahead and maximize your loved one’s quality of life [5].

Common questions in this guide

What is frontotemporal dementia?
Frontotemporal dementia, or FTD, is a group of progressive brain disorders caused by damage to the frontal and temporal lobes. This damage leads to profound changes in a person's personality, behavior, judgment, and language abilities. It is the most frequent form of dementia for individuals under age 60.
Why does it take so long to get an FTD diagnosis?
Because FTD often strikes in middle age and primarily causes personality or psychiatric changes rather than early memory loss, it is frequently misdiagnosed. Many patients are initially thought to be experiencing depression, a midlife crisis, or a psychiatric disorder, which can delay the correct diagnosis for years.
What is the difference between bvFTD and PPA?
The behavioral variant of FTD (bvFTD) primarily causes progressive changes in personality, social filters, and empathy. In contrast, primary progressive aphasia (PPA) mainly affects the brain's language centers, gradually robbing a person of their ability to speak, read, write, and understand words.
Are there medications to treat FTD behaviors?
While there is no cure to stop the progression of the disease, care teams can use specific medications to manage symptoms. Doctors frequently prescribe serotonergic antidepressants to help control mood swings, agitation, and challenging psychiatric behaviors associated with FTD.
Is frontotemporal dementia hereditary?
A significant portion of FTD cases have a genetic link. Because there is a 30 to 50 percent hereditary risk associated with certain FTD mutations, doctors often recommend meeting with a genetic counselor to discuss family history and testing options.

Questions to Ask Your Doctor

Curated prompts to bring to your next appointment.

  1. 1.Which specific variant of FTD (e.g., behavioral variant or primary progressive aphasia) do you suspect, and which areas of the brain are most affected?
  2. 2.What is my loved one's current score on the Clinical Dementia Rating (CDR) plus NACC FTD, and how will we track changes over time?
  3. 3.Are there specific medications, such as serotonergic antidepressants, that might help manage the behavioral or psychiatric symptoms we are seeing?
  4. 4.Does the clinical presentation suggest an overlap with other conditions like ALS or Parkinsonism?
  5. 5.Can you refer us to a genetic counselor to discuss the 30-50% hereditary risk associated with certain FTD mutations?

Questions For You

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References

References (16)
  1. 1

    Time to Diagnosis and Its Predictors in Syndromes Associated With Frontotemporal Lobar Degeneration.

    Libri I, Altomare D, Bracca V, et al.

    The American journal of geriatric psychiatry : official journal of the American Association for Geriatric Psychiatry 2024; (32(8)):1004-1013 doi:10.1016/j.jagp.2024.03.002.

    PMID: 38521735
  2. 2

    Characteristics and progression of patients with frontotemporal dementia in a regional memory clinic network.

    Leroy M, Bertoux M, Skrobala E, et al.

    Alzheimer's research & therapy 2021; (13(1)):19 doi:10.1186/s13195-020-00753-9.

    PMID: 33419472
  3. 3

    Behavioral Variant Frontotemporal Dementia.

    Boeve BF

    Continuum (Minneapolis, Minn.) 2022; (28(3)):702-725 doi:10.1212/CON.0000000000001105.

    PMID: 35678399
  4. 4

    Systematic Review: Genetic, Neuroimaging, and Fluids Biomarkers for Frontotemporal Dementia Across Latin America Countries.

    Duran-Aniotz C, Orellana P, Leon Rodriguez T, et al.

    Frontiers in neurology 2021; (12()):663407 doi:10.3389/fneur.2021.663407.

    PMID: 34248820
  5. 5

    Understanding Frontotemporal Disease Progression and Management Strategies.

    Mulkey M

    The Nursing clinics of North America 2019; (54(3)):437-448 doi:10.1016/j.cnur.2019.04.011.

    PMID: 31331629
  6. 6

    Neuropsychiatric Aspects of Frontotemporal Dementia.

    Younes K, Miller BL

    The Psychiatric clinics of North America 2020; (43(2)):345-360 doi:10.1016/j.psc.2020.02.005.

    PMID: 32439026
  7. 7

    New directions in clinical trials for frontotemporal lobar degeneration: Methods and outcome measures.

    Boxer AL, Gold M, Feldman H, et al.

    Alzheimer's & dementia : the journal of the Alzheimer's Association 2020; (16(1)):131-143 doi:10.1016/j.jalz.2019.06.4956.

    PMID: 31668596
  8. 8

    Comparison of sporadic and familial behavioral variant frontotemporal dementia (FTD) in a North American cohort.

    Heuer HW, Wang P, Rascovsky K, et al.

    Alzheimer's & dementia : the journal of the Alzheimer's Association 2020; (16(1)):60-70 doi:10.1002/alz.12046.

    PMID: 31914226
  9. 9

    The Neuropsychiatric Features of Behavioral Variant Frontotemporal Dementia.

    Peet BT, Castro-Suarez S, Miller BL

    Advances in experimental medicine and biology 2021; (1281()):17-31 doi:10.1007/978-3-030-51140-1_2.

    PMID: 33433866
  10. 10

    Pharmacological Management of Psychiatric Symptoms in Frontotemporal Dementia: A Systematic Review.

    Buoli M, Serati M, Caldiroli A, et al.

    Journal of geriatric psychiatry and neurology 2017; (30(3)):162-169 doi:10.1177/0891988717700506.

    PMID: 28351199
  11. 11

    Predictors of survival in frontotemporal lobar degeneration syndromes.

    El-Wahsh S, Finger EC, Piguet O, et al.

    Journal of neurology, neurosurgery, and psychiatry 2021; doi:10.1136/jnnp-2020-324349.

    PMID: 33441385
  12. 12

    The contribution of behavioral features to caregiver burden in FTLD spectrum disorders.

    Silverman HE, Ake JM, Manoochehri M, et al.

    Alzheimer's & dementia : the journal of the Alzheimer's Association 2022; (18(9)):1635-1649 doi:10.1002/alz.12494.

    PMID: 34854532
  13. 13

    The Impact of Caring on Psychological Wellbeing: A Qualitative Study in Carers of People Living With Behavioural-Variant Frontotemporal Dementia.

    Ocampo IM, Todd J, Wei G, Kumfor F

    Journal of geriatric psychiatry and neurology 2026; (39(4)):534-548 doi:10.1177/08919887251401262.

    PMID: 41271195
  14. 14

    Behavioral variant frontotemporal dementia in patients with primary psychiatric disorder: A magnetic resonance imaging study.

    Tafuri B, Filardi M, Frisullo ME, et al.

    Brain and behavior 2023; (13(4)):e2896 doi:10.1002/brb3.2896.

    PMID: 36864745
  15. 15

    Neuroimaging in Frontotemporal Dementia: Heterogeneity and Relationships with Underlying Neuropathology.

    Peet BT, Spina S, Mundada N, La Joie R

    Neurotherapeutics : the journal of the American Society for Experimental NeuroTherapeutics 2021; (18(2)):728-752 doi:10.1007/s13311-021-01101-x.

    PMID: 34389969
  16. 16

    Association of cortical morphology, white matter hyperintensity, and glymphatic function in frontotemporal dementia variants.

    Xiao D, Li J, Ren Z, et al.

    Alzheimer's & dementia : the journal of the Alzheimer's Association 2024; (20(9)):6045-6059 doi:10.1002/alz.14158.

    PMID: 39129270

This guide provides educational information about frontotemporal dementia for families and caregivers. It does not replace professional medical advice, diagnosis, or treatment from a qualified neurologist or healthcare provider.

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