Posterior cortical atrophy (PCA) is a progressive neurodegenerative condition that affects areas in the brain responsible for visual processing and spatial perception. Over time, other thinking skills such as memory, executive functions, and word retrieval may become affected.
What is PCA?
Posterior cortical atrophy (PCA) is a progressive neurodegenerative condition that affects areas in the brain responsible for visual processing and spatial perception. Over time, other thinking skills such as memory, executive functions, and word retrieval may become affected
What Causes PCA?
In the majority of PCA cases, the underlying cause is Alzheimer’s disease. Lumbar punctures conducted in the clinic as well as specialized positron emission tomography (PET) scans can show abnormal accumulation of amyloid and tau proteins that form the plaques and tangles seen in Alzheimer’s disease, thus confirming the diagnosis. Although PCA is usually caused by Alzheimer’s disease, it can also result from other diseases including Lewy body disease and corticobasal degeneration, and the clinical features may be different in these cases. PCA is often under-recognized or misdiagnosed since patients and doctors can mistake visual cognitive decline (a problem with the brain) for a visual acuity impairment (a problem with the eyes).
MGH PCA Program
The MGH FTD Unit’s PCA program, under the direction of Deepti Putcha, Ph.D., offers a cross-discipline collaborative approach to caring for people living with PCA as well as for their families. Our patients will receive a highly specialized clinical evaluation, which can diagnose or provide a second opinion confirmation of the PCA diagnosis. We also facilitate referrals to appropriate specialists and resources designed to optimize quality of life in line with evidence-based treatment guidelines. We are committed to supporting families through their whole journeys with this disease and as such, we offer comprehensive support and education about living with PCA and how to plan for the future. Our patients will also have the opportunity to participate in research designed to better understand and develop future treatments for those living with PCA. Our PCA program is also affiliated with the Massachusetts Alzheimer’s Disease Research Center and the MGH Memory Disorders Unit.
If you want to learn more about the MGH PCA program, you may email Dr. Putcha directly at [email protected].
Highly Specialized Clinical Evaluation
Our team has over a decade of experience in diagnosing and caring for individuals with PCA. At your initial clinic appointment, you will be evaluated by a team of neurologists, neuropsychologists, speech-language therapists, and caregiver support specialists. These evaluations will include a detailed clinical interview with patients and family members, as well as neurocognitive testing, with the aim of guiding diagnosis and treatment.
Referrals and Educational Resources
In the event that our patients would benefit from other specialty clinical services, we facilitate these referrals and work closely with these providers to optimize clinical care. Specifically, these specialties include neuro-ophthalmologists who can conduct more extensive evaluations of visual network dysfunction, occupational therapists who have familiarity treating PCA patients, as well as speech and language therapists who can provide cognitive and language therapy to optimize cognitive functioning in the earlier stages of the disease. We also work with the MA Association for the Blind to secure services and accomodations that our patients may benefit form. Patients may wish to review the PCA tip sheet to optimize environmental factors and help support daily independence.
We also suggest reviewing informational websites such as the Alzheimer’s Association, the Alzheimer’s Research UK, Rare Dementia Support, and this PCA blog.
Check out Roon interviews for answers to frequently asked questions about Posterior Cortical Atrophy by Dr. Putcha and other PCA experts and caregivers.
Assistive Technology
Here are suggestions for assistive technology and apps that our PCA patients and other visually impaired individuals have found helpful to support reading and other visually demanding daily activities.
- ViewClix: A tablet that allows for video calls, photo albums, and reminders without the need to navigate with the technology.
- Audm: Audio presentation of news articles.
- Speechify: A text-to-speech reader that will read you any text you input.
- Be-my-eyes: A service that connects those with low vision with sighted representatives for visual assistance through a live video call.
- ReadClear: An app that facilitates reading for patients with PCA. This free app was developed by a neuropsychologist who specializes in studying and treating PCA.
Support
MGH FTD Unit Caregiver Support Services
Our team of caregiver support specialists can meet with your family to identify goals of care, establish a person-centered care plan, and connect you to community resources. We can also provide education specifically about the PCA syndrome and what to expect as the disease progresses. Learn more about MGH FTD Unit Caregiver Support Services.
Cognitive skills and Care partner support group:
For all research participants, we offer a weekly skills and support group for patients and care partners. This group is designed for individuals living with neurodegenerative diseases and their families. We welcome patients and care partners together, with a focus on cognitive skill-building in patients and education/support for care partners. To protect the health and safety of all participants and staff, all groups are currently offered remotely.
From Care to Cure Newsletter:
The MGH FTD Unit is committed to providing connections with relevant information, helpful resources, and support within our community of patients and care partners. Each issue highlights current research projects and publications, authentic caregiver and patient voices, and spotlights relevant topics to improve quality of life. See our special issue on PCA. Email [email protected] to sign up for our online newsletter today.
Participation in Research
Our team is conducting several ongoing research studies aimed at better understanding the clinical, cognitive, and neurological features of PCA. Study participation generally includes detailed neurocognitive testing and comprehensive clinical interviews of the participant and caregiver experience. Neurocognitive testing is currently being administered remotely via Zoom video conferencing technology and may transition to in-person testing at the Charlestown Navy Yard in the future. Additional imaging evaluations (MRI or PET scans) may also be available for patients who are appropriate. All participants will be reimbursed for parking if applicable and will be monetarily compensated for the testing session whether remotely or in person. Participants will have the opportunity to access educational and support resources to better understand how to live with the diagnosis of PCA. To learn more, please email [email protected].
What have we learned from our research so far?
- Anterior dorsal attention network tau drives visual attention deficits in posterior cortical atrophy
Yuta Katsumi, Deepti Putcha, Ryan Eckbo, Bonnie Wong, Megan Quimby, Scott McGinnis, Alexandra Touroutoglou and Bradford C Dickerson. Brain. 2023 Jan 5;146(1):295-306. doi: 10.1093/brain/awac245. - Gray to white matter signal ratio as a novel biomarker of neurodegeneration in Alzheimer’s disease
Deepti Putcha, Yuta Katsumi, Michael Brickhouse, Ryn Flaherty, David H. Salat, Alexandra Touroutoglou and Bradford C. Dickerson. Neuroimage Clin. 2023; 37: 103303. Published online 2022 Dec 24. doi: 10.1016/j.nicl.2022.103303 - Verbal Encoding Deficits Impact Recognition Memory in Atypical “Non-Amnestic” Alzheimer’s Disease
Deepti Putcha, Nicole Carvalho, Sheena Dev, Scott M. McGinnis, Bradford C. Dickerson, and Bonnie Wong. Brain Sci. 2022 Jul; 12(7): 843. Published online 2022 Jun 28. doi: 10.3390/brainsci12070843. - Tau and the fractionated default mode network in atypical Alzheimer’s disease
Deepti Putcha, Ryan Eckbo, Yuta Katsumi, Bradford C Dickerson, Alexandra Touroutoglou and Jessica A Collins. Brain Commun
. 2022 Mar 9;4(2):fcac055. doi: 10.1093/braincomms/fcac055. eCollection 2022. - Tau and the fractionated default mode network in atypical Alzheimer’s disease
Deepti Putcha, Ryan Eckbo, Yuta Katsumi, Bradford C Dickerson, Alexandra Touroutoglou and Jessica A Collins. Brain Commun. 2022 Mar 9;4(2):fcac055. doi: 10.1093/braincomms/fcac055 - Word retrieval across the biomarker-confirmed Alzheimer’s disease syndromic spectrum
Deepti Putcha, Bradford C Dickerson, Michael Brickhouse, Keith A Johnson, Reisa A Sperling and Kathryn V Papp. Neuropsychologia. 2020 Mar 16;140:107391. doi: 10.1016/j.neuropsychologia.2020.107391. - Visual cognition in non-amnestic Alzheimer’s disease: Relations to tau, amyloid, and cortical atrophy
Deepti Putcha, Michael Brickhouse, Alexandra Touroutoglou, Jessica A Collins, Megan Quimby, Bonnie Wong, Mark Eldaief, Aaron Schultz, Georges El Fakhri, Keith Johnson, Bradford C Dickerson and Scott M McGinnis. Neuroimage Clin. 2019;23:101889. doi: 10.1016/j.nicl.2019.101889. - Diagnostic evaluation and monitoring of patients with posterior cortical atrophy
Bonnie Wong, Diane E Lucente, Julie MacLean, Jaya Padmanabhan, Megan Quimby, Katherine D Brandt, Deepti Putcha, Janet Sherman, Matthew P Frosch, Scott McGinnis and Bradford C Dickerson. Neurodegener Dis Manag. 2019 Aug;9(4):217-239. doi: 10.2217/nmt-2018-0052. - Executive dysfunction contributes to verbal encoding and retrieval deficits in posterior cortical atrophy
Deepti Putcha, Scott M McGinnis, Michael Brickhouse, Bonnie Wong, Janet C Sherman and Bradford C Dickerson. Cortex. 2018 Sep;106:36-46. doi: 10.1016/j.cortex.2018.04.010. - Association of In Vivo [18F]AV-1451 Tau PET Imaging Results With Cortical Atrophy and Symptoms in Typical and Atypical Alzheimer Disease
Chenjie Xia, Sara J Makaretz, Christina Caso, Scott McGinnis, Stephen N Gomperts, Jorge Sepulcre, Teresa Gomez-Isla, Bradley T Hyman, Aaron Schultz, Neil Vasdev, Keith A Johnson and Bradford C Dickerson. JAMA Neurol. 2017 Apr 1;74(4):427-436. doi: 10.1001/jamaneurol.2016.5755.
Make a Donation
Our PCA research and support programs aim to fully understand this rare illness and develop techniques for earlier detection and better care for patients and families. Our research is generously funded by the National Institute on Aging, the National Institute of Neurological Disorders and Stroke, the Alzheimer’s Association, and the private donations of many individuals. Philanthropic contributions allow us to develop new ideas for treatment, care, and a cure for PCA and related atypical dementias. Please consider donating to the MGH FTD Unit, where the MGH PCA program is located.
We are always looking for individuals who would like to participate in our efforts, whether they be patients, family members, interested individuals from the public, potential donors, other health care professionals, or other researchers.