June is Aphasia Awareness Month, bringing awareness of language-based disorders to people around the U.S. While many Americans have not heard of aphasia, even fewer know about primary progressive aphasia (PPA), an FTD disorder characterized by the loss of one’s ability to speak, read, write, and/or understand what others are saying.

Because PPA isn’t well known, it can be difficult for persons diagnosed, care partners, and family members to find resources to help manage the disease. To mark Aphasia Awareness Month, AFTD is highlighting the variety of resources we have available for families affected by PPA.

Like any FTD disorder, misdiagnosis in PPA is common due to its symptomatic overlap with other conditions (including other dementias) and a lack of awareness among healthcare providers. To help ensure a more accurate diagnosis, try filling out and sharing AFTD’s PPA diagnostic checklist with your doctor. The checklist contains diagnostic criteria for PPA and can help your doctor better determine if your symptoms match one of the three variants of PPA.

The three variants of PPA can be differentiated by how language is affected. However, some symptoms overlap between variants, such as difficulty swallowing. Below is a summary for each disorder with a link to an informational flyer with variant-specific symptoms:

As PPA progresses, communication will become increasingly difficult for a diagnosed person. There are several strategies that diagnosed people, care partners, and families can use to manage communication difficulties and preserve language-based skills.

Some of these interventions for communication difficulties can be daunting at first. If you feel overwhelmed, try starting with this Tips & Advice article, which concisely reviews some basic approaches. For a more detailed guide, consider this Help & Support feature previously published in Help & Hope.

AFTD’s Partners in FTD Care offers additional support. For example, the Winter 2012 issue of Partners discusses the role of speech-language therapy and introduces some interventions for handling communication issues. The Winter 2016 edition provides a more in-depth look into the communications difficulties associated with PPA and a detailed analysis of different strategies to address them. The Fall 2020 issue of focuses on lvPPA and provides an overview of how to adapt to its specific symptoms as they arise.

For a broad overview of PPA, including interventions and diagnostic criteria, watch the AFTD Educational Webinar “What You Should Know About PPA”, featuring Dr. Emily Rogalski of Northwestern University.

While PPA is typically characterized by language difficulties, many diagnosed with PPA develop behavioral, social, or motor complications seen in other forms of FTD. These symptoms can include compulsive behavior, apathy, or anosognosia, a lack of awareness about one’s condition. The Managing FTD page on AFTD’s website features various resources for managing the many symptoms that can manifest across FTD disorders.

Managing PPA is difficult, especially as the disease’s progressive nature means that symptoms will evolve over time. If you need advice on handling a specific symptom, could use guidance on managing communication difficulties, or want to talk to someone who knows what you are going through, AFTD’s HelpLine is here to help. AFTD’s HelpLine staff can provide personalized guidance and answer any questions about PPA or any FTD disorder you might be facing.

You can contact the HelpLine at 1-866-507-7222 or info@theaftd.org.