Primary Progressive Aphasia, or PPA, is a type of dementia that affects language.

For many people, the first signs aren’t memory problems. Instead, they may notice changes in how they speak, understand, read or write. Words may be harder to find. Conversations may take more effort, or it may become harder to follow what‘s being said, especially in busy or noisy places.

These changes can be subtle at first. Some people describe it as having a word on the tip of their tongue more often than usual. Over time, it becomes clearer that something more is going on.

PPA affects communication. It doesn’t change a person’s intelligence.

What people may notice

PPA can look different from person to person, but early signs may include:
• Difficulty finding the right word
• Hesitations or long pauses in conversation
• Trouble following spoken language
• Difficulty reading or spelling
• Using more general words, such as “thing” when the specific word is hard to retrieve
• Finding conversation harder when there’s background noise or several people talking at once.

As Christa Grbin (Aphasia New Zealand) explains in our recorded conversation, PPA is a language-led dementia, which means language symptoms are often the first symptoms to appear.

More than language alone

In the early stages, some people with PPA may feel their memory is still working well. They may know exactly what they want to say but have trouble getting the words out.

As the condition progresses, other changes can appear as well. These may include changes in decision-making, memory, mobility, swallowing, behaviour or personality. This varies from person to person. No two people will experience it in exactly the same way.

Different forms of PPA

There are three recognised forms of PPA:

• Non-fluent variant – where speaking becomes effortful and sentences may become harder to form
• Semantic variant – where understanding the meaning of words becomes harder
• Logopenic variant – where word-finding becomes the main difficulty.

Not everyone fits neatly into one of these groups. That’s one reason diagnosis can take time.

Getting a diagnosis

If you’re concerned about changes in language or communication, it is a good idea to start the assessment process early.

Diagnosis of PPA usually comes through a specialist such as a neurologist or geriatrician. The first step is usually to speak with your GP, who can make a referral. Assessment may include brain imaging, language testing, and information from the person and those close to them about what has been changing over time.

What can help

There is currently no cure for PPA, but there are ways to support communication and quality of life.

These may include:
• Speech and language therapy
• Communication strategies for family and friends
• Reducing noise and distractions
• Using photos, written cues, calendars or other visual supports
• Support groups
• Education for care partners and whānau.

One of the most helpful ideas discussed in the recording is that silence can be useful. For someone with PPA, a pause is not empty space. It can be the time they need to process what has been said and work out how to respond.

Connection is important

Because language is such a big part of everyday life, PPA can affect confidence, relationships, work, hobbies and social connection. That can be hard for the person living with PPA, and for the people around them.

But conversation isn’t the only way people connect.

In the discussion link below, Christa talks about the value of doing things together without putting pressure on talking all the time. That might be gardening, baking, walking, fishing, dancing, or simply sitting together in a way that feels easy and familiar.

Support groups can also make a real difference. They offer a space where people don’t have to explain everything from the beginning. People understand.