Cognitive & Dementia Resources for Families & Caregivers
Managing Behavioral Symptoms of Dementia
Frontotemporal Dementia and the Role of Neuropalliative Care
Frontotemporal Dementia and the Role of Neuropalliative Care
Click the image above to watch a premier video presentation, posted with permission, from The Penn Memory Center, research dept at the University of Pennsylvania's
Empowering Caregivers Workshop Series
University of Pennsylvania, Phila, PA.
Alison Lynn, LCSW from the PMC hosts Rachel Wiley MS, OTR/L, CDP, owner and Founder of Day by Day Home Therapy https://www.daybydayhometherapy.com
to discuss managing difficult behavioral symptoms in patients with dementia. Rachel will teach how to identify causes of behavioral symptoms using the Triadic Model, offer advice to help caregivers develop strategies to reduce challenging behaviors, such as: resistance to receive help with care and unwillingness to stop driving.
Frontotemporal Dementia and the Role of Neuropalliative Care
Frontotemporal Dementia and the Role of Neuropalliative Care
Frontotemporal Dementia and the Role of Neuropalliative Care
The Role of Neuropalliative Care in FTD
Click the image above to watch this amazing webinar delivered by Dr. Christina Vaughan, MD, through The Association for Frontotemporal Degeneration (AFTD).
This AFTD Educational Webinar defines neuropalliative care and its role in managing symptoms and improving quality of life for patients with FTD. Dr. Christina Vaughan, M.D., of the University of Colorado, discusses the difference between palliative care and hospice. She explains the role both play in comprehensive FTD care. Dr. Vaughan also explains how families and patients can access neuropalliative care.
The Association for Frontotemporal Degeneration (AFTD), also has many other educational webinars available to help patients and families cope with this oftentimes devastating disease on their website, which can be accessed here:
Rare Dementia Support Educational Resources
Frontotemporal Dementia and the Role of Neuropalliative Care
Rare Dementia Support Educational Resources
Click the image above to link to the "Rare Dementia Support" educational resources webpage. You will find many valuable resources, such as factsheets, interactive courses, videos, podcasts and lectures.
Rare types of dementias may start with symptoms such as problems with vision, language, movement and behavior, while memory is spared. Examples are:
- Posterior Cortical Atrophy (PCA)
- Frontotemporal Dementia (FTD)
- Lewy Body Dementia (LBD)
- Primary Progressive Aphasia (PPA)
These resources are designed for patients, families, caregivers and medical professionals. This page is funded by The National Brain Appeal in London.
More Educational Resources for Families & Caregivers
The Alzheimer’s Association
Provides disease education, support groups, and personalized care consultation in person, online and through a free 24/7 Helpline: 800.272.3900.
Alzheimer’s Disease Education and Referral (ADEAR) can be accessed here:
The Penn Memory Center
The Penn Memory Center (PMC), which is primarily a research department at the University of Pennsylvania, has many excellent programs for patients, families, and caregivers. One of my favorite programs is their Empowering Caregivers Workshop Series. Click the button below to view many excellent and informative talks.
What is Primary Progressive Aphasia?
Primary Progressive Aphasia (PPA) is a neurological syndrome where language slowly and progressively becomes impaired. There are three variants: semantic PPA, logopenic PPA, and non-fluent/agrammatic PPA. Each variant presents slightly differently and is caused by neurodegeneration (neurons dying off) in specific regions of the brain.
Frontotemporal Dementia (FTD).... it is Not Alzheimer's Disease
FTD results when the neurons in the "frontal" and "temporal" regions of the brain die off more rapidely in portion to the remainder of the brain. The age of onset is usually younger than Alzheimer's Disease and patients experience a progressive decline in behavior, language or movement, with memory often spared.
Efficacy of Aducanumab (Aduhelm)- Unbiased Data
Data of the ENGAGE and EMERGE Trials explained, simply...
Click the image to the left, at the 4-min-marker, join Sarah K. Emond, MPP, Executive Vice-President and COO of ICER‒Institute for Clinical and Economic Review. Ms. Emond will walk you through data analyses of the ENGAGE and ENERGE clinal trials, which were conducted to ascertain the efficacy of aducanumab in treating Alzheimer's Disease.
On June 7, 2021, the FDA approved aducanumab in spite of a nearly unanimous vote from the Scientific Advisory Committee not to bring this drug to market. This was an unprecedented decision, so much so , that it spurred two congressional investigations and an investigation by the Attorney General to expose a possible improper, unethical relationship between the FDA and Biogen (the creators of Biogen). Ms. Emond offers a very simple and concise explanation of the data of these trials. Ultimately, ICER agrees the current data does not support use of aducanumab at this time. However, future clinical trials may change that perspective and thus further research is greatly needed.
Final Evidence Report released from ICER about efficacy of aducanumab.
On August 5, 2021, ICER released their Final Evidence Report assessing the clinical effectiveness and value of aducanumab for the treatment of Alzheimer’s disease. Their statement is as follows: "At the conclusion of this effort, despite the tremendous unmet need for new treatments for Alzheimer’s disease, we have judged the current evidence to be insufficient to demonstrate that aducanumab slows cognitive decline, while it is clear that it can harm some patients."
Facts about ICER (Institute for Clinical and Economic Review)
ICER was founded in 2006 as a research program at Harvard Medical School. Currently, they function as an independent non-profit research organization that evaluates the evidence on the clinical and economic value of prescription drugs. ICER is funded by grants from non-profit foundations and other unbiased sources. Thus, their opinions and presentations are free from financial conflicts, which is often to be unusual among many medical expert opinions today. All ICER reviews are transparent, rigorous, evidence-based, and available for free to the public.
Enjoy Our APP2APP Lectures for Medical Professionals
Delivered Live on June 23, 2021 FREE Lecture
Delivered Live on July 14, 2021 FREE Lecture
Delivered Live on July 14, 2021 FREE Lecture
Lecturer: Sharon Best, PA-C, MHS
Sharon is a Physician Assistant who specializes in two distinct areas of medicine: Cognitive Neurology & NaProTECHNOLOGY.
From 2018-2021, she was sub-investigator on multiple clinical trials and she saw patients in the clinic at the Penn Memory Center at the University of Pennsylvania.
Learn how to interpret brain MRIs. Even if you don't work in the speciality of dementia, this lecture will help all providers improve their skills in interpreting MR brain imaging. Sharon will guide you with tips and tricks to recognize as you cross sulci and move through different lobes. You will also learn to recognize common areas mentioned in radiology reports and improve your skills to recognize various deep brain structures.
Delivered Live on July 14, 2021 FREE Lecture
Delivered Live on July 14, 2021 FREE Lecture
Delivered Live on July 14, 2021 FREE Lecture
Lecturer: Sharon Best, PA-C, MHS
Sharon is a Physician Assistant who specializes in two distinct areas of medicine: Cognitive Neurology & NaProTECHNOLOGY. From 2018-2021, she was sub-investigator on multiple clinical trials and she saw patients in the clinic at the Penn Memory Center at the University of Pennsylvania.
Learn to interpret MRIs and PET Scans in patients with dementia. This lecture is a sequel to Sharon's "MRI Interpretation for Dementia - ANATOMY". However, even if you missed the former lecture, you will be able to easily follow this discussion. Sharon will discuss common dementia syndromes and correlate the history, physical exam, cognitive testing, MRI findings and PET scan imaging to support the different diagnoses.
Delivered Live on August 18, 2021 FREE Lecture
Delivered Live on July 14, 2021 FREE Lecture
Recording Posted on May 18, 2022 FREE Lecture
Lecturer: Sharon Best, PA-C, MHS
Sharon is a Physician Assistant who specializes in two distinct areas of medicine: Cognitive Neurology & NaProTECHNOLOGY. From 2018-2021, she was sub-investigator on multiple clinical trials and she saw patients in the clinic at the Penn Memory Center at the University of Pennsylvania.
During this lecture you will learn to recognize the root criteria required to make a diagnosis of Primary Progressive Aphasia. You will also learn to recognize criteria required to correctly diagnosis each of the different variants, ie: Semantic (svPPA), Logopenic (lvPPA) and Non-Fluent/Agrammatic (nfPPA). Focus will be placed on bedside testing, MR Imaging and FDG PET interpretation through case studies.
Recording Posted on May 18, 2022 FREE Lecture
Recording Posted on May 18, 2022 FREE Lecture
Recording Posted on May 18, 2022 FREE Lecture
Lecturer: Lauren Massimo, PhD, CRNP
Lauren is an assistant professor in the school of Nursing at the University of Pennsylvania. She is an avid researcher, and she sees patients in the Cognitive Neurology Clinic. Lauren specializes in neurodegenerative diseases such as Alzheimer’s disease, Frontotemporal degeneration, and Amyotrophic Lateral Sclerosis
Do you have a loved one who is suffering from dementia? Almost everyone does. Join Lauren Massimo to learn about Alzheimer disease and related dementias (ADRDs). She will discuss how to recognize common presenting signs and symptoms to help you differentiate between diagnosis of neurodegenerative diseases in the clinical setting.
Recording posted Oct 28, 2022 FREE Lecture
Recording Posted on May 18, 2022 FREE Lecture
Recording posted Oct 28, 2022 FREE Lecture
Lecturer: Sara L Wolfson, DNP, APRN
Sara is a Gerontological Nurse Practitioner who practices at Nebraska Medical Center in Omaha, NE. She specializes in dementia care and palliative care.
Sara will lend her expertise and offer insight into how to engage in conversations with patients who have serious illness or who are approaching end of life. She will help clinicians develop a framework for thinking about how to structure such conversations, and she will describe several key skills to approach these discussions with honesty and compassion. This lecture will help APPs who are working in many speciality areas, such as Primary Care, Internal Medicine, Palliative Care, Gerontology, Neurology and Cardiology.
Recording Posted Nov 16, 2022 FREE Lecture
Recording Posted on May 18, 2022 FREE Lecture
Recording posted Oct 28, 2022 FREE Lecture
Lecturer: Matthew Estrade, MA, MBA
Matthew is a gerontologist from Louisiana. He has been a care partner support group facilitator since 2015. He has facilitated over 250 sessions for the Council on Aging in St. Tammany Parish (county) in Louisiana.
Matthew built www.DementiaRosary.com, an educational platform which offers daily videos, weekly blog articles, and monthly live Rosaries. All of these activities are described in his book:
The Peace With Dementia Rosary: Education, Intentions, Community
Matthew discussed how to launch dementia support groups within your medical practice, hospital or local community.