Topic guides: Rare Dementias: Primary Progressive Aphasia

Dementia Australia resources

Communication problems in dementia - Should I see a speech pathologist?
Webinar. In this video we are joined by Professor Kirrie Ballard, discussing how speech therapy can support people with dementia and their family. The video will also help you understand when to speak with a speech pathologist, what they can help with, how they work, and how to find one.
Speech Pathology and Dementia Joint Position Statement (2024)
Dementia impacts each person differently, but changes to communication skills or eating, drinking and swallowing skills are commonly seen at some stage for most people living with dementia. Communication is a human right. Swallowing difficulties can impact physical health, nutrition and wellbeing.

Lived experience of PPA

Where the Light Gets In by Kimberly Williams-Paisley
Publication Date: 2016
audioBook
Many know Kimberly Williams-Paisley as the bride in the popular Steve Martin remakes of the Father of the Bride movies,or Peggy on Nashville, or the wife of country megastar Brad Paisley. But in 2014, Williams-Paisley revealed that her mother had been diagnosed with a rare form of dementia called primary progressive aphasia at the age of 61. She describes educating herself on her mother's condition, letting go of the shame and secrecy that surrounded it, and finding unexpected humour and grace in a terrible situation.

Books

Frontotemporal disorders : information for patients, families, and caregivers
Publication Date: 2019
Frontotemporal disorders are a common cause of dementia in people under age 65. Understanding these little-known conditions can help people with the disorders, their families, and other caregivers know what to expect and how to cope with the challenges that arise. The resources below are useful guides to medical, family, long-term care, and other issues.
This booklet from the National Institute on Aging (NIA) describes the three types of frontotemporal disorders—behavioral variant frontotemporal dementia, primary progressive aphasia, and related movement disorders—as well as their causes, diagnosis, and common symptoms. Information and advice for caregivers and a list of resources are included.
Essentials of Dementia by Shibley Rahman
Publication Date: 2018
This book is an introductory reference guide that will help students, professionals and practitioners develop their skills and expertise to better respond to the needs of people with dementia. It sets out information and advice on essential topics, research and evidence-based practice within dementia care in a clear, sensible way.
The PPA Guide: Primary Progressive Aphasia, Australian Aphasia Association by Taylor-Rubin, C and others
Publication Date: 2023
This guide is a useful resource for people living with primary progressive aphasia and their family, friends and other supporters.
What is primary progressive aphasia? by Alzheimer's Research UK
This booklet provides an overview of a condition called primary progressive aphasia (PPA), a rare form of dementia. It’s for anyone who is noticing symptoms in themselves or somebody else, or for people who want to know more about PPA and how it is diagnosed.

Journal articles and papers

My experience of person-centered and personalized care in early-stage primary progressive aphasia (2025)
I received an early and accurate clinical diagnosis of the nonfluent/agrammatic variant of PPA, supported by imaging. I am fortunate to have benefited from exemplary individualized care from a multidisciplinary medical team from the onset of my difficulties with language. In this paper, I discuss my lived experience of all aspects of this personalized and person-centered care, describing how it was founded on shared decision-making and a holistic, dementia-inclusive approach encompassing the physical, mental, emotional, psychosocial and spiritual dimensions of living with an incurable neurodegenerative disease.
Douglas JT. My experience of person-centered and personalized care in early-stage primary progressive aphasia. Dementia. 2025;24(3):353-367.
The course of primary progressive aphasia diagnosis: a cross-sectional study (2022)
The primary progressive aphasia (PPA) diagnosis trajectory is debated, as several changes in diagnosis occur during PPA course, due to phenotype evolution from isolated language alterations to global cognitive impairment.
The goal of the present study, based on a French cohort, was to describe the demographics and the evolution of subjects with (PPA) in comparison with Alzheimer’s disease (AD) on a period of 7 years.
Mouton, A., Plonka, A., Fabre, R. et al. The course of primary progressive aphasia diagnosis: a cross-sectional study. Alz Res Therapy 14, 64 (2022).
The affective, behavioural, and cognitive reactions to a diagnosis of Primary Progressive Aphasia: A qualitative descriptive study (2022)
Receiving a diagnosis of neurodegenerative disorder is life changing. Primary progressive aphasia is one such disease. Understanding how receiving this diagnosis impacts on individuals may help plan support services. However, limited qualitative research from the perspectives of people with Primary Progressive Aphasia are available for suitable care planning. Current literature primarily focuses on experiences of family members. The present study aims to fill this gap by examining the affective, behavioural, and cognitive experiences of people with Primary Progressive Aphasia.
Lo K-C, Bricker-Katz G, Ballard K, Piguet O. The affective, behavioural, and cognitive reactions to a diagnosis of Primary Progressive Aphasia: A qualitative descriptive study. Dementia. 2022;21(8):2476-2498. doi:10.1177/14713012221124315
Characterization of the logopenic variant of Primary Progressive Aphasia: A systematic review and meta-analysis (2022)
The linguistic and anatomical variability of the logopenic variant of Primary Progressive Aphasia (lv-PPA) as defined by current diagnostic criteria has been the topic of an intense debate. The present review and meta-analysis aims at characterizing the profile of lv-PPA, by a comprehensive analysis of the available literature on the neuropsychological, neuroimaging, electrophysiological, pathological, and genetic features of lv-PPA.
Understanding the multidimensional cognitive deficits of logopenic variant primary progressive aphasia (2022)
The logopenic variant of primary progressive aphasia is characterized by early deficits in language production and phonological short-term memory, attributed to left-lateralized temporoparietal, inferior parietal and posterior temporal neurodegeneration. Despite patients primarily complaining of language difficulties, emerging evidence points to performance deficits in non-linguistic domains.
Siddharth Ramanan, Muireann Irish, Karalyn Patterson, James B Rowe, Maria Luisa Gorno-Tempini, Matthew A Lambon Ralph, Understanding the multidimensional cognitive deficits of logopenic variant primary progressive aphasia, Brain. 2022;145(9): doi.org/10.1093/brain/awac208
Speech and language therapy approaches to managing primary progressive aphasia (2019)
Speech and language therapists have developed several impairment-based interventions and compensatory strategies for use in the clinic. This review highlights the reasons why neurologists should refer people with PPA to speech and language therapists.
Volkmer, A., Rogalski, E., Henry, M., Taylor-Rubin, C., Ruggero, L., Khayum, R., Kindell, J., Gorno-Tempini, M. L., Warren, J. D., & Rohrer, J. D. (2020). Speech and language therapy approaches to managing primary progressive aphasia. Practical neurology, 2019,1–9. doi:10.1136/practneurol-2018-001921

Websites

Primary progressive aphasia (PPA) - Rare Dementia Support
If you or somebody you know has received a diagnosis of PPA, or you are interested in learning more about PPA, this website is designed to guide you and provide you with information and advice.
The Australian Aphasia Association
The Australian Aphasia Association is the national peak body and advocacy organisation for people living with aphasia in Australia. We provide services, information, resources, support and advocacy.

Logopenic Variant Primary Progressive Aphasia (lvPPA)

Logopenic Variant Primary Progressive Aphasia
UCSF Memory and Aging Center
A Patient’s Guide to Logopenic Variant Primary Progressive Aphasia (lvPPA)
A Healthcare Provider’s Guide To The Logopenic Variant Of Primary Progressive Aphasia (lvPPA): Diagnosis, pharmacologic management, non-pharmacologic management, and other considerations
Understanding the multidimensional cognitive deficits of logopenic variant primary progressive aphasia (2022)
The logopenic variant of primary progressive aphasia is characterized by early deficits in language production and phonological short-term memory, attributed to left-lateralized temporoparietal, inferior parietal and posterior temporal neurodegeneration. Despite patients primarily complaining of language difficulties, emerging evidence points to performance deficits in non-linguistic domains.
Siddharth Ramanan, Muireann Irish, Karalyn Patterson, James B Rowe, Maria Luisa Gorno-Tempini, Matthew A Lambon Ralph, Understanding the multidimensional cognitive deficits of logopenic variant primary progressive aphasia, Brain, Volume 145, Issue 9, September 2022, Pages 2955–2966

Nonfluent Variant Primary Progressive Aphasia (nfvPPA)

My experience of person-centered and personalized care in early-stage primary progressive aphasia (2025)
I received an early and accurate clinical diagnosis of the nonfluent/agrammatic variant of PPA, supported by imaging. I am fortunate to have benefited from exemplary individualized care from a multidisciplinary medical team from the onset of my difficulties with language. In this paper, I discuss my lived experience of all aspects of this personalized and person-centered care, describing how it was founded on shared decision-making and a holistic, dementia-inclusive approach encompassing the physical, mental, emotional, psychosocial and spiritual dimensions of living with an incurable neurodegenerative disease.
Douglas JT. My experience of person-centered and personalized care in early-stage primary progressive aphasia. Dementia. 2025;24(3):353-367.
Nonfluent Variant Primary Progressive Aphasia
UCSF Memory and Aging Center
A Patient’s Guide to Nonfluent Variant Primary Progressive Aphasia (nfvPPA)
A Healthcare Provider’s Guide To The Nonfluent Variant Of Primary Progressive Aphasia (nfvPPA): Diagnosis, pharmacologic management, non-pharmacologic management, and other considerations

Semantic Variant Primary Progressive Aphasia (svPPA)

Semantic Variant PPA
Semantic Variant Primary Progressive Aphasia
UCSF Memory and Aging Center
A Patient’s Guide to Semantic Variant Primary Progressive Aphasia (svPPA)
A Healthcare Provider’s Guide to Semantic Variant Primary Progressive Aphasia (svPPA): Diagnosis, pharmacologic management, non-pharmacologic management, and other considerations
Distinguishing Semantic Variant Primary Progressive Aphasia from Alzheimer’s Disease (2023)
Journal of Alzheimer's Disease Reports, vol. 7, no. 1, pp. 227-234, 2023