Progressive Non Fluent Aphasia EIDS

A rare Dementia

What is dementia?
Dementia is a broad term which is used to describe a group of symptoms that can affect people’s memory, thinking skills, speech, judgement, and mood. Over time, these symptoms can result in difficulties even with day-to-day tasks.

The symptoms of dementia get worse over time, so people with dementia need more and more support in their everyday life. 

What is Progressive Non Fluent Aphasia?
Progressive Non-Fluent Aphasia (PNFA) is a rare type of language-based dementia. In this condition, people’s speech and language comprehension skills are affected first. This is different from other, more common types of dementia where the first symptom is usually a change in a person’s memory of day-to-day events.

People with PNFA have difficulties speaking and may find talking more effortful. Although they know what they want to say, they may make mistakes in using the right words or grammar, and start talking in shorter sentences.

PNFA is a Frontotemporal Dementia (FTD). FTD is an broad term for a group of dementias involving the frontal (the areas behind your forehead) and temporal (the areas behind your ears) lobes of the brain. 
Because the frontal parts of the brain also have a role in personality, people with PNFA may develop mild personality changes. These include having low social awareness, making uncontrolled or shameless comments or jokes, becoming obsessive about certain things, engaging in repetitive behaviours, and participating less in conversations and social activities than usual.

What are the symptoms of PNFA?
Early symptoms
• Speaking slowly or hesitantly
• Stuttering or finding speech effortful
• Uttering words incorrectly or in the wrong order
• Speaking in shorter sentences
• Omitting words while speaking 
• Making mistakes while reading or writing
• Difficulty making sense of what people are saying, especially longer sentences
• Difficulties in making decisions
• Change in everyday behaviour such as apathy, agitation, or low mood
• Reversing words, for example saying ‘Yes’ when they meant ‘No’

Later symptoms
• Talking very little
• Movement changes, such as being unsteady or developing a tremor
• Difficulties swallowing

For some types of dementia, such as Alzheimer’s, medications are available to boost one of the memory chemicals of the brain which can enhance thinking skills. These medications are extremely limited in what they can do and do not cure dementia or slow it down. These medications do not work for PNFA and in some cases, make the symptoms worse.

Available options
You may be referred to a Speech and Language Therapist, who can provide you with information on suitable speech exercises, tips on communication, and advice on swallowing difficulties which can be helpful in the early stages of PNFA. 

Research has also shown that keeping the brain active in ways that you enjoy helps to enhance brain health. People with PNFA often continue to enjoy activities that are less language-based. For example, they might find activities that involve a lot of socialising and conversation problematic, but often enjoy activities such as board games, jigsaw puzzles, and listening to audiobooks or music. In some cases, people with PNFA find singing easier than speaking and therefore continuing with a choir or a singing group can be helpful. 

Regular gentle exercise, getting enough sleep, not smoking, and reducing alcohol intake are other important ways to keep the brain healthy. Your GP can review your physical health to ensure that illnesses that affect the brain, such as diabetes, high blood pressure, and high cholesterol are treated as best as possible.

Most cases of Frontotemporal Dementia are spontaneous but approximately 30% can be family related. Hereditary conditions are common for the behavioural form of FTD and are rare in PNFA. If you have any concerns about whether dementia may run in your family, this is something you can discuss with the team.

Driving with PNFA
As with all types of dementia, it is your legal responsibility to inform the DVLA and your insurance company of your diagnosis. This is because 

having dementia can affect a person’s ability to drive. 
However, having dementia does not necessarily mean you will automatically be stopped from driving, as a lot of people with dementia are able to drive safely. Once you have informed the DVLA, they will write to you and your doctor to collect as much information as possible before making a decision.
If you have any concerns about driving, this is something you can talk to us more about.

DVLA Medical Enquiries: 0300 790 6806
(Monday - Friday: 8am to 7pm, Saturdays: 8am to 2pm)

Help and support
During your time with our service, we will talk to you more about support that is available and help you to access services that may be useful to you.

Our contact details:
Early Intervention Dementia Team
F Block, Kidderminster Hospital
01562 714777 
Monday - Friday, 9am to 5pm