In this bonus episode, we continue our conversation with Dr. Howie Rosen on Frontotemporal Dementia (FTD). On last week’s episode, Dr. Rosen spoke on the genetic risk factors, trajectories and family caregiving experiences of FTD. Now, our conversation turns to the research looking into how the disease affects self-awareness, biomarkers and early detection, as well as ways people can volunteer for a research study. Guest: Howard “Howie” Rosen, MD, behavioral neurologist at the University of California San Francisco Memory and Aging Center

Episode Topics:

•         FTD and self-awareness: 1:10

Frontotemporal dementia (FTD) is a type of dementia caused by degeneration in the temporal and frontal lobes of the brain. Our guest discusses the symptoms, risk factors, prevalence, and course of the disease, along with information on how a doctor diagnoses FTD and what families and caregivers can do after diagnosis. Guest: Howard “Howie” Rosen, MD, behavioral neurologist at the University of California San Francisco Memory and Aging Center

Episode Topics:

A definition of Frontotemporal Dementia (FTD) 1:02

How common is FTD? 3:53

Genetic risk factors of FTD: 4:30

Non-genetic risk factors of FTD: 6:40

Symptoms of FTD: 8:40

How a clinician diagnoses FTD: 14:03

What is the course of the disease? 16:20

What to do after a diagnosis: 18:51

Family and caregiver experience of FTD: 22:36

Community support and networking: 25:53

Our guests, Dr. Rebecca Koscik and Dr. Tobey Betthauser, are researchers investigating the trajectory of amyloid and tau proteins over time and the significance of amyloid chronicity. Koscik and Betthauser discuss their two recent publications on the topic and how amyloid PET scans have helped scientists better understand the early brain changes associated with Alzheimer’s disease. Guests: Rebecca Koscik, PhD, senior scientist, Tobey Betthauser, PhD, postdoctoral fellow, University of Wisconsin-Madison

In this episode, we discuss ...

• How amyloid PET tracers work 7:17

Our guest is Dr. Sterling Johnson, associate director of the Wisconsin Alzheimer’s Disease Research Center and principal investigator of the Wisconsin Registry for Alzheimer's Prevention (WRAP) study at the University of Wisconsin-Madison. The WRAP study is one of the largest and longest-running observational studies of Alzheimer's disease in the world. Dr. Johnson shares study findings, discusses advancements in brain imaging, and introduces the concept of amyloid chronicity. Guest: Sterling Johnson, PhD, professor of medicine (geriatrics), University of Wisconsin School of Medicine and Public Health

Show Notes:

• What is the WRAP study? 3:28

Dr. J. Neil Henderson is an expert on diabetes and dementia, as well as creating culturally specific caregiver training programs for people who care for American Indian elders. Dr. Henderson, who is Oklahoma Choctaw, discusses cultural influences on caregiving and his work in improving brain health among American Indians and rural populations. Guest: J. Neil Henderson, PhD, professor, University of Minnesota School of Medicine, Duluth campus; executive director, Memory Keepers Medical Discovery Team on Health Disparities

Show Notes:

Trainable caregiving skills: 1:07

Impact of culture on caregiving: 6:29

American Indian and rural health disparities in memory: 10:35

People diagnosed with Alzheimer’s disease before the age of 65 are said to have early-onset Alzheimer’s disease. While this diagnosis is rare, the condition is very serious for the patient and their loved ones. Our guest helps define the disease and its symptoms, walks listeners through a diagnosis, and points to unique considerations for patients and their caregivers. Guest: Susanne Seeger, MD, associate professor (clinical) of neurology, University of Wisconsin School of Medicine and Public Health 

• Defining early-onset Alzheimer’s disease and its symptoms: 0:58

A common concern for families and dementia caregivers is when to start talking about palliative care and hospice with and for their loved ones with dementia. Our guest, Dr. Kate Schueller, recommends these conversations happen soon after a diagnosis, when the dementia patient can still be involved in planning their care. This episode talks about the difference between palliative care and hospice, the right time to initiative services, and other considerations for patients, families, and caregivers. Guest: Dr. Kate Schueller, MD, assistant professor of medicine, Division of Hematology, Medical Oncology and Palliative Care, University of Wisconsin School of Medicine and Public Health

Key Moments:

• The difference between palliative care and hospice: 0:50

To many people, exercise can seem like an uncertain and intimidating new world. The confusing marketing around it can make it hard to find a healthy, sustainable exercise plan. But it's important for people to fit movement into their lives because a growing body of research is showing the positive effects that physical activity can have on your brain. Our guests Sarah Lose and Max Gaitan, research specialists and exercise physiologists, discuss building cognitive resilience, defining physical activity, and researching exercise and its links with brain health. Guests: Sarah Lose, Max Gaitan, Research Specialists and Exercise Physiologists, Okonkwo Lab, Alzheimer’s Disease Research Center, University of Wisconsin-Madison

“Overall, what our lab has found, is that physical activity and fitness can diminish or dampen both the effects of age and a genetic risk, or predisposition, to developing Alzheimer's disease." - Sarah Lose (9:57)

Key Moments:

• Clarifying the terms in exercise research: 1:21

Inflammation is a common response throughout the body that fights injury and infection and works to rebuild cells after damage. Inflammation works the same way in the brain, but sometimes the inflammatory response meets damage it can’t manage and becomes dysregulated. Our guest Dr. Linda Van Eldik discusses her research into the connections between neuroinflammation and neurodegenerative diseases like dementia, and how this research can help inform the medical community about drug-based treatments for Alzheimer’s disease.  Guest: Dr. Linda Van Eldik, Director, Sanders-Brown Center on Aging

In the advancing field of dementia research, the rise in genetic and biomarker testing for Alzheimer’s disease creates a need for conversations around how to disclose disease risk to research participants who may be years away from experiencing the symptoms of the disease. Guest Dr. Shana Stites discusses her research that examines public perception of the disease, associated stigma and discrimination, and how the research and medical communities can support people who learn about their Alzheimer’s disease risk profile. Guest: Shana D. Stites, PsyD, MS, Penn Memory Center, University of Pennsylvania Health System