FTD may begin with behavior or language rather than memory loss
Bonn’s dedicated FTD clinic describes a behavioral variant marked by disinhibition, socially inappropriate behavior, apathy, reduced empathy or altered eating behavior. Language-predominant FTD-spectrum disorders include primary progressive aphasia variants. A specialist assessment should therefore look beyond a standard memory score.
- Changes in social behavior, judgement or impulse control
- Loss of initiative or empathy
- Compulsive or stereotyped behavior
- Changes in eating behavior
- Progressive grammar, speech-production or word-meaning problems
- Impact on work, finances, relationships and daily safety
Psychiatric and neurological mimics must be considered
FTD can resemble depression, bipolar disorder, psychosis, personality change, Alzheimer’s disease or another neurological condition. Charité’s FTD and memory services combine neurological and neuropsychiatric expertise, while Bonn offers specialist neurological and psychiatric evaluation. Sudden behavioral change or confusion should not automatically be attributed to FTD because acute medical, toxic, infectious or vascular causes may require urgent local assessment.
Neuropsychology and structural imaging form the diagnostic core
Bonn provides FTD-specific neuropsychological assessment together with MRI, laboratory and CSF diagnostics. Charité also documents detailed neuropsychological dementia testing and CSF evaluation. The goal is to establish the cognitive-behavioral pattern and identify whether imaging supports frontal or temporal neurodegeneration while excluding important alternative explanations.
PET and CSF are selected tools, not automatic tests for every patient
Bonn lists PET and CSF among available advanced tests. These can be helpful when the phenotype or underlying pathology remains uncertain, but a useful second opinion should explain what diagnostic question each test is intended to answer rather than ordering a broad panel by default.
Genetic counseling is important in selected families
Bonn explicitly accepts families seeking advice about inherited FTD risk and provides genetic diagnostics. Charité offers genetic counseling and molecular genetic evaluation for hereditary FTD and participates in the GENFI network. Predictive testing in an unaffected relative should therefore be approached through formal counseling, not ordered casually as a direct-to-consumer test.
Treatment focuses on the symptoms that create the greatest risk or disability
Bonn describes specialist medication management for severe behavioral symptoms and treatment of neurological problems such as dysphagia or movement disorders that can appear during the disease course. The exact plan depends on the phenotype, safety risks, caregiver burden, comorbidity and previous medication response. Clinical-trial participation should be clearly separated from established symptom care.
Speech, swallowing and practical support can become central
Language-predominant FTD and later-stage disease can require speech-language therapy, communication strategies and swallowing assessment. Social-medical counseling, occupational support and caregiver education are also important because impaired judgement or behavior can affect employment, driving, finances and home safety even when memory initially appears relatively preserved.
Clinical studies are research, not guaranteed disease-modifying treatment
Both Bonn and Charité participate in FTD research and longitudinal studies. Research access can be valuable, especially for genetically defined disease, but eligibility and benefit are uncertain. A study opportunity should not be marketed as proven treatment, and international patients should understand which visits are clinical care and which are research procedures.
What to send for a German FTD second opinion
The best record package shows the timeline of behavioral or language change and the evidence supporting the current diagnosis.
- Neurology, psychiatry, geriatrics or memory-clinic reports
- Neuropsychological testing
- Brain MRI/CT reports and original images
- PET or CSF results if already performed
- Speech/language assessment for suspected PPA
- A collateral history from a close relative or caregiver
- Current and previous psychiatric/neurological medications
- Family history of FTD, ALS/motor-neuron disease or early-onset dementia
- Genetic results if already available
- A specific question: confirm subtype, review genetics, manage behavior/language symptoms or plan long-term support
Official sources
Sources last checked 2026-09-01. Clinical pathways, eligibility and hospital procedures can change; confirm current requirements directly with the treating center.