Building Awareness For Primary Progressive Aphasia In NZ

Friday, 4th of April, 2025 is the world’s first awareness day for Primary Progressive Aphasia (PPA). While thought to be a relatively rare disorder, it may be more prevalent than we know, and its impact on a person’s life is profound.

Primary Progressive Aphasia (PPA) is a condition resulting from gradual damage / degeneration in the language area of brain. People with PPA can have difficulty finding words, understanding conversations, reading and/or writing. PPA begins subtly and progresses over time. The first sign is usually word-finding difficulty.

While we all have some “tip of the tongue” moments where we just cannot get the word we want, for people with PPA this happens far more consistently with no explanation, and over time, becomes worse.

Virginia Schnauer of Hamilton was diagnosed with PPA last year. She explains what it is like living with PPA. “I’m ok talking general chit chat, but as soon as I try to explain or describe something my language disappears. I get frustrated when others, who don’t have aphasia, say to me “we do that too”. What is happening to them isn’t the same. When I lose a word, it actually feels like my head is empty inside. Sometimes I feel empty of language.” She adds “It has nothing to do with my intelligence. … it’s when I have to explain what I have been doing to others that my words fail me”.

Mark Gray, from Lower Hutt, received a diagnosis of PPA recently, but admits he has probably had it for quite a while. “This is what happens when I try to explain something to others. My words don’t come out well, they are literally muddled” explains Mark.

With PPA, language is lost over time and rehabilitation is not possible. This differs from the more common stroke-induced aphasia where rehabilitation is possible, and individuals can improve over time.

While considered a type of dementia, PPA is a “language-led” dementia where the first symptoms are language difficulties without cognitive, physical or behavioural changes. This can be confusing to whānau and friends. People with PPA often know what they are thinking, they just have difficulty accessing their language to express these thoughts. Non-language symptoms can occur in the later stages of PPA.

A family member explained “He understood what was going on, he knew who everyone was, but because he couldn’t get the words, people started explaining things as if he really had no idea. You could see that was tough for him.”

PPA tends to impact younger people in their 50’s and 60’s, with men and women equally affected. PPA is thought to be relatively rare, with roughly 3 people in 100,000 estimated to be diagnosed with this condition. Some researchers believe that this is an underestimate as it may be mistaken for memory loss and go undiagnosed. While rare, PPA is described as “immensely disabling and distressing, tending to affect people in later middle life and wreaking havoc on social and occupational functioning” (Belder et al. 2024).

Some awareness of PPA grew in 2022 when actor Bruce Willis and his family announced that he had been diagnosed with aphasia. However, they later changed their statements to a diagnosis of frontotemporal dementia (FTD). FTD and PPA were mistakenly represented as two different disorders, where in fact PPA is considered one type of FTD.

Although rehabilitation is not possible for people with PPA, Speech and Language Therapy can work on retaining language for as long as possible. People with PPA and their family can also learn alternative means of communication. International researchers have recently published an “expert consensus” on Speech Therapy input for PPA.

Kate Milford, Practice Supervisor with Aphasia NZ said “we are excited about a day specifically for PPA. We hope that this will increase awareness of PPA in both the general public and professionals working in the health system. Ultimately, we want people with PPA and their whanau to get the support they need.”

Aphasia New Zealand is a charitable organisation that seeks to raise awareness of PPA and aphasia, and can support people with PPA. We run in-person and online support groups around the country for people with PPA and their partners. Christa Grbin from AphasiaNZ, who runs PPA support groups says “there is an active and welcoming PPA community here in NZ. Our support groups are a place to share information and resources and build friendships. The members support each other and the benefits of this are clear to see”.

A member of the Waikato PPA support group explains “It’s the only social time we have with people who understand. We don’t have to explain ourselves to anyone. We’ve met people that we wouldn’t otherwise have met. They are true friends now.”

To self-refer or obtain more information people can go to aphasia.org.nz.

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