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PubMed This is a summary of 91 peer-reviewed journal articles Updated
Neurology

Frontotemporal Dementia (FTD): A Guide for Families and Caregivers

At a Glance

Frontotemporal dementia (FTD) is the most common form of dementia for people under 60. It causes progressive damage to the brain's frontal and temporal lobes, leading to severe changes in behavior, personality, and language. While there is no cure, symptoms can be managed with specialized care.

The journey to a diagnosis of frontotemporal dementia (FTD) is often long, confusing, and exhausting. If you have spent years searching for answers—perhaps being told it was a midlife crisis, depression, or Alzheimer’s—know that your experience is a common part of the FTD journey.

This resource is designed to help you and your family understand the condition, navigate the medical system, and advocate for the best possible care.

What is Frontotemporal Dementia?

Frontotemporal dementia (also known as frontotemporal lobar degeneration or FTLD) is a group of brain disorders caused by the progressive degeneration of the frontal and temporal lobes of the brain. These areas control personality, behavior, judgment, and language. FTD is the most common form of dementia for individuals under the age of 60.

Because FTD impacts individuals during their prime working and family-building years, and primarily affects behavior and language rather than memory, it requires a deeply specialized approach to care and management.

Navigating This Guide

This guide is broken down into specific topics to help you understand every aspect of the FTD journey:

01

Understanding Your FTD Diagnosis: A Guide for Families

A guide for families navigating a frontotemporal dementia (FTD) diagnosis. Learn about bvFTD, PPA, symptom management, and how to support your loved one.

02

Recognizing the Signs: Why FTD is Often Misdiagnosed

Learn why Frontotemporal dementia (FTD) is often misdiagnosed as depression or Alzheimer's. Understand early symptoms like apathy, disinhibition, and aphasia.

03

The FTD Spectrum: Understanding the Variants and Subtypes

Learn about the frontotemporal dementia (FTD) spectrum. Understand the differences between behavioral variant (bvFTD), language (PPA), and motor subtypes.

04

The Biology of FTD: Proteins, Genes, and Diagnostic Tools

Learn about the biology behind frontotemporal dementia (FTD). Understand key proteins like Tau and TDP-43, genetic causes, and diagnostic brain scans.

05

Managing Life with FTD: Treatment, Strategies, and Caregiver Support

Learn how to manage frontotemporal dementia (FTD) symptoms. Understand treatment options like SSRIs, non-drug strategies, and essential caregiver support.

06

The Path Ahead: Understanding Prognosis and Progression

Understand frontotemporal dementia (FTD) prognosis and disease progression. Learn about survival times by variant, late-stage symptoms, and care planning.

While there is currently no cure for FTD, its symptoms can be managed. By building the right care team and equipping yourself with knowledge, you can navigate this challenging path and prioritize your family’s quality of life.

Common questions in this guide

What is frontotemporal dementia (FTD)?
Frontotemporal dementia is a group of progressive brain disorders caused by damage to the frontal and temporal lobes. It is the most common form of dementia in people under age 60 and primarily affects personality, behavior, and language rather than memory.
Why is FTD frequently misdiagnosed?
Because FTD often begins in a person's 40s or 50s and changes behavior rather than memory, it is frequently mistaken for a midlife crisis, depression, or a psychiatric disorder. Getting an accurate diagnosis often requires seeing a specialized neurologist.
Who should be on my FTD care team?
A comprehensive FTD care team usually starts with a neurologist. Depending on the specific symptoms, the team should also include a social worker, an occupational therapist, and a speech-language pathologist to manage behavior and communication changes.
Is there a cure for frontotemporal dementia?
There is currently no cure for frontotemporal dementia. However, a specialized care team can help manage the symptoms, maximize safety, and improve the quality of life for both the patient and their family.
What are the first steps to take after an FTD diagnosis?
After an FTD diagnosis, families should immediately establish legal and financial protections, such as a Medical and Financial Power of Attorney. Caregivers also need to build a personal support team to ensure they receive essential respite care.

Questions to Ask Your Doctor

Curated prompts to bring to your next appointment.

  1. 1.What specific subtype or variant of FTD do you suspect, and what is the basis for that diagnosis?
  2. 2.Who should I include on my care team beyond a neurologist, such as a social worker, occupational therapist, or speech-language pathologist?
  3. 3.What clinical trials might we be eligible for, and how can we get connected with them?

Questions For You

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This guide is for informational purposes only and does not replace professional medical advice. Always consult a specialized neurologist or healthcare provider regarding a frontotemporal dementia diagnosis, symptoms, or care plan.

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