Frontotemporal Dementia

Overview

Frontotemporal dementia (FTD) is a group of brain conditions that damage the front and side parts of the brain. These areas help control personality, behavior, language, and decision-making. FTD is different from Alzheimer's disease and often starts at a younger age.

FTD is less common than Alzheimer's disease. It is one of the more common causes of dementia in people under 65.

FTD usually affects people between about 45 and 65, but it can happen at other ages. It affects men and women. Some families have a strong genetic link.

Symptoms

Common symptoms

• Changes in personality or behavior, such as becoming rude, selfish, or not caring about others
• Lack of interest or motivation (apathy)
• Doing the same things over and over, or making poor decisions
• Eating much more, craving sweets, or putting things in the mouth
• Trouble finding words, understanding speech, or speaking clearly
• Memory may be less affected at first than in Alzheimer's disease

Symptoms in children

• FTD is very rare in children. Behavior or language changes in a child should be checked by a child health professional.

Symptoms in older adults

• FTD can occur in older adults, but it often starts earlier. New behavior or language changes in an older adult should still be checked.
• Older adults with FTD may be mistakenly thought to have another type of dementia or a mental health condition.

Causes

Main causes

• Damage to nerve cells in the frontal and temporal parts of the brain
• Buildup of abnormal proteins in the brain
• Inherited gene changes in some families

Risk factors

• A family history of FTD or a related brain condition
• Age, especially between 45 and 65
• Certain gene changes passed through families

When to see a doctor

See a doctor urgently if:

• Rapidly worsening confusion or behavior
• Unsafe wandering, aggression, or hallucinations
• Trouble swallowing, choking, or refusing food and drink
• Being unable to care for basic needs safely

Book a routine appointment if:

• Gradual changes in personality, empathy, or behavior
• New language problems that affect daily life
• Memory or thinking changes that worry you or your family
• A family history of FTD or early-onset dementia

Diagnosis

There is no single test for FTD. A doctor asks about changes over time, talks with family or carers, checks thinking and language, and orders tests to rule out other causes.

Tests that may be done

• Questions and tasks that check memory, thinking, and language
• Brain scans such as MRI or CT
• Blood tests to look for other causes
• A neurological exam
• Sometimes genetic testing or a spinal fluid test

What to expect at your appointment

You may see more than one specialist. Diagnosis can take time because several conditions can cause similar changes. Bring a family member or friend to appointments if you can.

Treatment

There is no cure for FTD. Treatment focuses on helping with symptoms, keeping the person safe, and supporting family and carers.

Self-care at home

• Keep a calm, simple daily routine
• Use lists, reminders, and labels to help with daily tasks
• Make the home safer, for example by reducing fall and wandering risks
• Plan ahead for money, legal matters, and care needs
• Ask for breaks and support if you are a carer

Medical treatments

Specialists may suggest non-drug approaches first, such as routines, therapy, and carer training. Medicines are sometimes used carefully for mood or behavior symptoms, and a specialist decides what is safe. No medicine is approved to slow FTD itself.

When is surgery considered?

Surgery is not used to treat FTD. Sometimes surgery may be needed for other health problems, and the care team will consider thinking and safety risks.

Living with this condition

Living with FTD works best with clear routines, simple communication, and a safe home. Family and carers often need practical help and emotional support too.

Lifestyle tips

• Keep routines regular and familiar
• Use short, calm sentences and allow extra time to respond
• Stay socially connected where possible
• Plan activities that match the person's abilities and interests
• Ask your doctor about local dementia and carer services

Diet and exercise

A balanced diet and regular movement support general health. A dietitian or speech therapist can help if eating or swallowing problems develop. Exercise can lift mood and sleep, adapted to ability.

Mental health and emotional wellbeing

FTD can cause worry, grief, and stress for the person and their family. Caring can feel very heavy. If you or a loved one has thoughts of self-harm or suicide, contact your local emergency number or a local crisis service right away.

Prevention

There is no known way to prevent FTD. Because some cases run in families, genetic counseling can help people understand their risk.

Vaccines

There is no vaccine to prevent frontotemporal dementia.

Screening programmes

There is no routine screening test for FTD. People with a strong family history may be offered genetic counseling.

Complications

If left untreated

• Thinking and behavior problems get worse over time
• Safety risks from wandering, falls, or poor judgment
• Problems with eating, swallowing, and infections later
• Caregiver stress and burnout

Long-term outlook

FTD gets worse over time, but the speed varies. Many people live for years after diagnosis. Early planning, support, and care can improve quality of life. Ask your care team about what to expect and what help is available.

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