High burden on those with PSP and their caregivers, regardless of type 

This international study (US and five European countries) found that there is a high burden of progressive supranuclear palsy on patients, caregivers, and healthcare systems, regardless of PSP phenotype.

While there are eight PSP phenotypic variants, this study included 242 patients with six phenotypes.  Most of the participants have a diagnosis of PSP-Richardson’s syndrome or PSP-Parkinsonism.  PSP-R, PSP-P, and three other phenotypes are described in this Brain Support Network blog post from 2009.

This international research describes PSP as a “relentlessly progressive” disorder, causing significant disability:

The debilitating nature of the disease to people living with PSP was further illustrated in this study by 14 different symptom types being reported in >50% of all patients, as well as specific symptoms being reported in almost all patients, across all phenotypes (in particular difficulty walking, blepharospasm/involuntary blinking, rigidity, and dysphagia).

Given these debilitating symptoms, the research notes the burden on caregivers and raises the issue of caregiver depression:

The intense (in terms of hours of care per week) and comprehensive nature of assistance…required [from caregivers] is unsurprising… These results also likely explain the high level of psychological burden, often leading to depression, documented in caregivers of people living with PSP.

The research notes the dangers if both caregiver and care recipient have depression:

Considering that the most common comorbidity reported in people living with PSP in this study was also depression, it is feasible that in some scenarios both the patient and the caregiver experience depression. This is a critical issue considering the knowledge that poor mental health among caregivers is predictive of mortality of people living with neurodegenerative disease in general, but also specifically in PSP.”

You can read the full article online at no charge:

The Burden of Progressive Supranuclear Palsy on Patients, Caregivers, and Healthcare Systems by PSP Phenotype: A Cross-Sectional Study
Front. Neurol., 04 July 2022
Demetris Pillas, Alexander Klein, Teresa Gasalla, Andreja Avbersek, Alexander Thompson, Jack Wright, Jennifer Mellor and Anna Scowcroft