About primary progressive aphasia (PPA) and development of the guide
Primary progressive aphasia (PPA) is a rare dementia that affects language. Word finding difficulties and communication are the earliest signs which lead to profound impacts on everyday conversations, activities and life roles.1
Because PPA is rare, many healthcare services do not have experience supporting people with PPA, and it can be difficult to access information to understand the changes and develop strategies to live well.2,3
But that is about to change. Researchers, speech pathologists and a lived experience Dementia Australia advocate developed a new Australian resource to share practical ideas and strategies to help people with PPA navigate communication symptoms and optimise their participation in life.
Natalie is a member of the Australian Aphasia Association (AAA) Executive Board and the Dementia Australia Advisory Committee and is living with PPA. Like many others, it took Natalie several years to receive a diagnosis and she had to navigate the system and find information on her own.
Natalie shared her thoughts on the PPA Guide below:
“The PPA guide will be an educational tool for allied health services and the medical sector more broadly. This will ensure that newly diagnosed individuals will have the latest information available and their care team can guide them sensitively throughout their personal PPA journey.
It was the most wonderful opportunity to work collaboratively with Jade, Cathy, and Deborah on this amazing PPA guide. They welcomed me firstly for who I am as a person, and for who I am professionally, which is an educator, followed by my lived experience of PPA.”
The PPA Guide
The PPA Guide is a 42-page comprehensive and practical guide. It provides:
- an overview of the different variants of PPA,
- information for families and health professionals
- strategies and ideas for managing PPA, including practical examples of evidence-based communication techniques, tools and assistive aids to support conversations,
- information on the role of speech pathologists and other health professionals to help maintain and improve language skills and social connections.4
We are delighted to share the PPA Guide with the Forward with Dementia audience, and welcome feedback and suggestions for future development of the guide. Additional resources will be created to support use of the PPA Guide, including video material. In the future, we hope to showcase stories of how people use the PPA Guide and the impact it makes.
Access the PPA Guide via the AAA and Dementia Australia websites (see links below). We acknowledge the contribution and feedback provided by members of Dementia Australia’s Dementia Advocates Program. We also acknowledge the generous financial support of Arlene and Alan Howes, enabling the first print run of the PPA Guide. Copies will be distributed to speech pathologists working with people with PPA around Australia to promote supported access to the PPA Guide.
Links to the PPA Guide:
References
1Gorno-Tempini, M. L., Hillis, A. E., Weintraub, S., Kertesz, A., Mendez, M., Cappa, S. F., … & Grossman, M. (2011). Classification of primary progressive aphasia and its variants. Neurology, 76(11), 1006-1014.
2Ho, T., Whitworth, A., Hersh, D., & Cartwright, J. (2023). “They are dealing with people’s lives…”: Diagnostic and post-diagnostic healthcare experiences in primary progressive aphasia. International Journal of Speech-Language Pathology, 1-13.
3Taylor-Rubin, C., Croot, K., & Nickels, L. (2021). Speech and language therapy in primary progressive aphasia: A critical review of current practice. Expert Review of Neurotherapeutics, 21(4), 419-430.
4Volkmer, A., Cartwright, J., Ruggero, L., Beales, A., Gallée, J., Grasso, S., … & Hersh, D. (2023). Principles and philosophies for speech and language therapists working with people with primary progressive aphasia: An international expert consensus. Disability & Rehabilitation, 45(6), 1063-1078.
Tips for supporting a person with PPA
- Use the PPA Guide to help you understand the condition and find strategies to help.
- You can assist communication, connection, and conversation in creative ways. Slowing down your speech and pausing more often will give the person with PPA time to speak. The PPA Guide provides ideas for visual aids that enable conversation such as using pictures, writing, and drawing.
- Provide emotional support. Adjusting to a diagnosis of PPA can be difficult. Being there and validating the person’s feelings and experiences can be helpful. Patience and allowing extra time also help.
- For supporters, take care of yourself. It’s important to think about your own wellbeing to sustain the support you provide to your family member or friend with PPA.
- Supporting someone with PPA should not lead to social isolation. Keep in touch with your friends, and keep busy and active in meaningful, social activities.
