Frontotemporal Dementia

Frontotemporal dementia (FTD) is a rare form of dementia caused by clumps of abnormal protein forming inside the brain cells, which are thought to cause damage to the cells in different areas of the frontal and temporal lobes of the brain. During early stages, a person’s memory can be fine, but their behaviour, personality, language skills, and decision‑making can change.

FTD occurs when nerve cells in the frontal and temporal regions become damaged and the connections between these areas and other parts of the brain begin to break down. As the condition progresses and more nerve cells are lost, the brain tissue in the affected areas gradually begin to shrink.

Most types of dementia mainly affect people over the age of 65. However, frontotemporal dementia can develop earlier, typically between the ages of 45 and 65. Although it can affect both younger and older people.

This dementia may often cause a person to:

• Say and do things at the wrong time and in the wrong place
• Loss of sympathy or empathy
• Loss of interest in things or people
• Repetitive, compulsive behaviours
• Changes in language such as errors in grammar, slow, hesitant speech or difficulty finding the right word

The progression of this dementia is unpredictable and in the later stages, symptoms are similar to those of Alzheimer’s disease.

There is no one test used to diagnose a type of dementia. Rather, the diagnosis involves a range of assessments and tests and this can mean that confirming a diagnosis can take time, particularly in the early stages.

A diagnosis of dementia usually begins with a General Practitioner, GP.  It can be helpful to make a note of the changes causing concern before your visit to help you to talk to the GP about them. Perhaps keep a diary to help you to do this.

The GP will generally begin an assessment by ruling out other possible causes of symptoms you are experiencing; this may involve running some tests including blood tests and memory tests as well as an overview of your general health. Some other possible causes of the symptoms you are experiencing include thyroid disorders, vitamin deficiency and side effects of some medication.

The GP may refer to a consultant who will conduct a full assessment to try to establish the cause of the symptoms.   You can download our factsheet, Who’s who in Dementia care  to understand the different professional involved in the dementia journey. If you want a physical copy, you can ring our National Helpline on 1800 341 341 and we can post it out to you.

If you are under 65, you will be referred to a neurologist or a memory clinic. If you feel a referral to a specialist would be helpful you can discuss this with the GP.

The consultant will conduct a full assessment to try to establish the cause of the symptoms. They usually work with a specialist team and you may see a number of people from this team. This process usually includes

• Blood tests,
• A full history of family medical background,
• A physical examination,
• An assessment of memory, thinking and activities of daily living,
• A brain scan (CT, MRI) to identify any changes taking place in the brain which may form part of the assessment, but this may not be required for every case.

The doctors will work directly with the person who is experiencing changes. The doctor may also ask family members to talk about any changes they see or any concerns they may have.

After the assessment, the consultant will draw together all the results and determine what is happening. It may be that the assessment is repeated at a later date in order to identify further changes and confirm a diagnosis.

What if a diagnosis is made?

A diagnosis of dementia can come as a shock, no matter how much it is expected. It is hard for everyone concerned and reassurance and support are vital. The most important thing is to try to be positive and to know that you are not alone. There are people you can talk to and supports and services that can help.

Your GP will be an important person to support you to live well with dementia. You can talk to them about your dementia, about any medications and treatments you may be prescribed, about areas such as driving and about any symptoms that may emerge.  You can contact our National Helpline on 1800 341 341 for information on services and supports available . You can also read our factsheet Early symptoms and diagnosis.

There is currently no cure for frontotemporal lobe dementia. However, there are methods that can help control some of the symptoms which include:

• Physiotherapy, occupational therapy and speech and language therapy. These can help with communication, movement and every day tasks. You can speak to your GP or PHN for a referral to see any of these professionals.
• Medication to help with mood and reduce compulsive behaviours
• Social clubs, Alzheimer cafes to keep engaged socially and mentally. Visit our Supports and services page for information on what is available in your county.

Antidepressants can be prescribed to help manage symptoms.  From time to time, anti-psychotic drugs may be prescribed to deal with extremely distressing symptoms. In this circumstance, it is essential that the doctor is fully aware of the diagnosis and the implications. With all medication, it is important to understand what drugs are being prescribed, why they are being prescribed, what benefits they are supposed to bring, and what side-effects may emerge. Where possible, it is important for the person with dementia and a trusted person to discuss this with the prescribing doctor. In 2019 the Department of Health launched a national clinical guideline for the “appropriate prescribing of psychotropic medication for non-cognitive symptoms in people with dementia”. A guide for people with dementia was published and is available HERE

Medication that may be prescribed:

Antidepressants, such as Selective Serotonin Reuptake Inhibators (SSRIs) can help manage symptoms like:

• Loss of inhibitions
• Overeating
• Compulsive behaviours

Antipsychotics can sometimes be prescribed if SSRIs are no longer effective. Antipsychotics are usually only prescribed if challenging behaviour is putting the person with dementia or other people at risk of harm,