Rare Dementias

This global review aims to systematically evaluate the epidemiological variation, clinical phenotypes, diagnostic practices, and management strategies for PSP, focusing on regional disparities and identifying influencing genetic and environmental factors.
Kukkle, P. L., Neupane, R., Pantelyat, A., Wills, A. M., Jabbari, E., Dopper, E. G. P., Kovacs, G. G., Hoglinger, G., Aiba, I., Litvan, I., Ganguly, J., Whitwell, J. L., Ma, J., Okeng'O, K., Skakibara, R., Forrest, S., Lorenzl, S., Zewde, Y. Z., Compta, Y., Morris, H. R., … MDS‐PSP Study Group (2025). Progressive Supranuclear Palsy-A Global Review. Movement disorders clinical practice, 10.1002/mdc3.70338. Advance online publication. https://doi.org/10.1002/mdc3.70338

Diagnosing PSP is challenging owing to the lack of tools for differential examination. Additionally, the pathomechanism of this disease is not sufficiently understood, and no treatment is currently available. Owing to the growing interest in the disease’s progression, evaluating the quality of life (QoL) for patients with PSP has become crucial. This review emphasizes the significance of QoL evaluation and its feasibility for practical implications, serving as an initial foundation for future research focused on the well-being of individuals affected by PSP.
Markiewicz, M., Madetko-Alster, N., & Alster, P. (2024). Quality of life in patients with progressive supranuclear palsy: A review of literature and implications for practice. Frontiers in Neurology, 15 https://doi.org/10.3389/fneur.2024.1476488

Agarwal S, Gilbert R. Progressive Supranuclear Palsy. [Updated 2023 Mar 27].

This research was conducted to (i) gain insight into the clinical and emotional journey of patients with PSP, (ii) assess experiences and perspectives, (iii) understand disease impact and (iv) identify key challenges and unmet needs.
Respondek, G., Breslow, D., Amirghiasvand, C., Ghosh, B., Bergmans, B., van Wyk, L., Irfan, T., Dossin, R., & Vanderavero, C. (2023). The Lived Experiences of People with Progressive Supranuclear Palsy and Their Caregivers. Neurology and therapy, 12(1), 229–247. https://doi.org/10.1007/s40120-022-00420-1

a systematic review of studies reporting incidence and prevalence of CBS and PSP. While some epidemiological studies have used the term corticobasal degeneration (CBD) we have used the term CBS throughout, as denoting the clinical syndrome. We have reserved the term CBD for the pathological diagnosis.
Lyons, S., Trépel, D., Lynch, T., Walsh, R., & O'Dowd, S. (2023). The prevalence and incidence of progressive supranuclear palsy and corticobasal syndrome: a systematic review and meta-analysis. Journal of neurology, 270(9), 4451–4465.

Dolhun, R. (2016). Diagnosis and Management of Neurodegenerative Atypical Parkinsonism, The Michael J. Fox Foundation for Parkinson’s Research, https://www.michaeljfox.org/sites/default/files/media/document/WHITEPAPER_ATYPICAL_PARKINSONISM.pdf

Information about PSP, including diagnosis, living with PSP, resources, and support.

CurePSP is the leading nonprofit organization dedicated to the awareness, care and cure for three neurodegenerative diseases: progressive supranuclear palsy (PSP), corticobasal degeneration (CBD) and multiple system atrophy (MSA). As a catalyst for new treatments and a cure, we establish important partnerships and fund critical research. Through our advocacy and support efforts, we enhance education, care delivery and quality of life for people living with PSP, CBD and MSA and their families. Science, community and hope are at the heart of CurePSP’s mission and all of our services.

PSP Association UK has some useful information. However, please note they are an international organisation and references to medication or support programs might not be applicable in Australia.