Dementia Matters

A recent study from researchers at the University of Wisconsin School of Medicine and Public Health found that people who lived in the most disadvantaged neighborhoods were about twice as likely to have Alzheimer’s disease-related brain changes at autopsy than people who lived in the wealthiest neighborhoods. One of the authors joins the podcast to discuss the research findings, the methodology behind the study, and future research directions. Guest: Ryan Powell, PhD, University of Wisconsin School of Medicine and Public Health Department of Medicine

Episode Topics:

• What are social determinants of health? 1:30
• What is the Area Deprivation Index? 3:28
• What did your study investigate? 7:24
• What did you learn from your study of brain autopsy results? 8:49
• How do you think social factors interact with brain changes? 11:10
• Why is access to Alzheimer’s Disease Research Centers important? 13:35
• What is the next step for your research? 16:44
• As a society, how can we slow the ...

After serving as the primary caregiver for his wife for 11 years, Dr. Arthur Kleinman shares the unexpected experiences, difficulties and lessons that he faced. His book, The Soul of Care: The Moral Education of a Husband and a Doctor, chronicles the emotional and physical journey as a caregiver for a loved one with Alzheimer’s disease. Guest: Arthur Kleinman, MD, professor of medical anthropology and cross-cultural psychiatry, Harvard University

Episode Topics:

• Do you believe caregiving and empathy can be taught? 1:25
• Unexpected experiences as a caregiver: 3:34
• How do you communicate to your loved ones you need help with caregiving? 10:22
• Differences between “illness” and “disease”: 20:38
• Why is important for the community to welcome individuals with memory loss? 27:06

Research data collected from participants around the world has grown our understanding of genetic risk for Alzheimer’s disease. Guest Jessica Langbaum, PhD, is the co-director of the Alzheimer’s Prevention Initiative at Banner Alzheimer’s Institute, which conducts clinical trials in people at high risk for developing Alzheimer’s disease. Langbaum discusses some recent findings in genetic predisposition for Alzheimer’s disease, the psychological consequences of learning one’s risk, and testing interventions to delay or prevent the onset of symptoms. Guest: Jessica Langbaum, PhD, Banner Alzheimer’s Institute

Episode Topics:

• What is the Alzheimer’s Prevention Initiative? 3:44
• What is the difference between the APOE gene and the presenilin gene? 6:07
• How are you approaching disclosure of genetic risk to participants? 12:15
• What kind of responses have you received from participants who were told about their genetic risk? 15:32
• What would you recommend to an individual interested in learning ...

A recent study showed that research participants in the most highly disadvantaged neighborhoods had smaller hippocampal areas compared to research participants in more advantaged neighborhoods. The study’s first author explains the results and the tools researchers used to measure neighborhood disadvantage. Guest: Jack Hunt, PhD, University of Wisconsin School of Medicine and Public Health Medical Scientist Training Program

Episode Topics:

• Association between neighborhood and brain structures: 1:52
• Study findings: 4:01
• Defining neighborhood disadvantage: 4:57
• Who were the research participants involved in the study? 5:42
• Why did you study the hippocampus in your research? 6:10
• Related cardiovascular factors: 8:20
• Using the Neighborhood Atlas to find neighborhood advantage by zip code: 10:22
• Neighborhoods disadvantage and individual socioeconomic status: 13:17
• Future research opportunities: 14:26
• What can people in the community do with the results of this study? 17:36
• Follow-up study ...

COVID-19 Special Series The pandemic has placed a significant strain on the mental, social, and physical wellbeing of many caregivers, as well as individuals with cognitive decline. Our guest discusses COVID-19’s impact on underserved communities, offers communication tips, and reminds people to practice self-care. Guest: Andrea Gilmore-Bykovskyi, PhD, RN, University of Wisconsin-Madison School of Nursing 

Episode Topics: 

• Caregiver considerations for a pandemic. 2:31
• Self Care for caregivers. 6:05
• How the pandemic is affecting caregivers from underserved communities. 10:55
• Recommendations for caregivers when planning a trip to a medical facility. 13:51
• Advice for families trying to communicate with loved ones who are hospitalized. 15:36
• Tips for communicating with loved ones in a care facility. 17:43
• What caregivers should know for the future. 21:05 

Show Notes: All of the important issues happening right now cannot be fully covered, so we strongly encourage you to go to trusted ...

COVID-19 Special Series Stress, fear, and anxiety are common responses to the uncertainty during the COVID-19 pandemic. However, with the regular practice of mindfulness, the meditative process of bringing your attention to your body in the present moment, has been seen to help calm the worry. Our guest joins us to discuss using mindfulness methods to maintain and mange an overall wellbeing. Guest: Vincent Minichiello, MD, University of Wisconsin School of Medicine and Public Health

Episode Topics:

• How do you define mindfulness? 2:55
• How does mindfulness affect our body? 5:15
• Is it common to feel muscle relaxation while practicing mindfulness? 8:24
• What are mindfulness-based interventions? 9:54  
• Can mindfulness be health focused? 13:36
• Where do you see mindfulness fitting into healthcare, especially during the pandemic? 14:01
• How can mindfulness be useful during the COVID-19 pandemic? 16:11
• Can mindfulness be beneficial for individuals with cognitive impairments and caregivers? 18:21 ...

COVID-19 Special Series As a result of the COVID-19 pandemic visiting and communicating with people living with memory loss, whether at home or in a care facility, has become more difficult. Our guest joins us to outline the different ways to communicate remotely, how rural communities are adapting to this change and methods to help caregivers cope. Guest: Becky DeBuhr, MS, Program Director, Alzheimer’s & Dementia Alliance of Wisconsin.

Episode Topics:

• Ways for caregivers to connect with loved one:
  o    Technology 3:02
  o    Window visits 4:41
  o    Mail 6:00
• What can families reasonably ask of professional caregiving staff? 9:22
• How can family members communicate their support remotely? 12:45
• How are caregivers in rural communities being affected? Is there a difference in urban communities? 15:09
• Methods to help caregivers cope now and post-pandemic. 17:40
• Key tips for caregivers at home or in a facility. 20:21

Show Notes: To learn more about the Alzheimer’s & Dementia Alliance of ...

COVID-19 Special Series The field of telemedicine offers a diverse range of medical support services through telecommunication. Under the global pandemic, many providers have moved to telemedicine to assist their patients. Our guest discusses the advantages and disadvantages to using video and phone doctor visits and offers tips for best use of the services. Guest: Steve Barczi, MD, University of Wisconsin School of Medicine and Public Health

Episode Topics:

• What is telemedicine? 3:25
• Benefits of telemedicine 8:04
• Downside of telemedicine? 11:05
• Is telemedicine covered by insurance? 13:30  
• How has COVID-19 changed the utilization of telemedicine? 18:27
• Key takeaways 24:20
• Telemedicine tips for people with cognitive impairments and older adults 25:05
• How to prepare for a telemedicine visit 28:14
• Best practices for a telemedicine visit 30:45

Show Notes: All of the important issues happening right now cannot be fully covered, so we strongly encourage you to go to trusted sources for ...

COVID-19 Special Series This episode discusses the work done by The Alzheimer’s Association, an organization focused on providing community education and assistance to all affected by Alzheimer’s disease or other dementias. Our guest details how care and support services have quickly adapted to keep families and loved ones safe, healthy, and connected under quarantine. Guest: Kate Kahles, Program Manager, Alzheimer's Association Wisconsin Chapter

Episode Topics:

• How have support groups changed under the pandemic? 2:53
• Alzheimer’s Association Helpline 5:50
• Types of support groups 7:15
• Advice for coping with the anxiety from having a loved one in a facility 9:00
• Outreach to rural communities 12:28 
• How has the stay-at-home order affected caregivers? 13:49
• Activities for caregivers and persons living with dementia 16:59
• Advance care planning 19:24
• Key services 20:14

Show Notes: To learn more about the Alzheimer’s Association and support services near you go to the Community Resource ...

COVID-19 Special Series The National Family Caregiver Support Program (NFCSP) offers information, support, and resources to assist family caregivers (spouse, adult child, other relative, friend or neighbor) with their concerns related to caregiving. COVID-19 has impacted many resources and supports. Funding is available to help. This episode delves into what the program offers and ways to support caregivers and care recipients especially during the pandemic Guest: Jane DeBroux, Caregiver Program Coordinator, Dane County Area Agency on Aging

Episode Topics:

• What is the National Family Caregiver Support Program? 2:55 
• How has the COVID-19 pandemic changed the program? 4:02
• What does the program offer? 4:43
• What are the eligibility requirements? 10:20

Show Notes: To learn more about the National Family Caregiver Support Program (NFCSP) program in your county reach out to your local Area Agency on Aging or Aging & Disability Resource Center. If in Dane County, Wisconsin, contact Jane ...

COVID-19 Special Series This episode continues our conversation with Art Walaszek, MD, focusing on the psychological and behavioral effects of the COVID-19 pandemic. Our guest helps us understand the fears and anxieties that are heightened during this time and recommendations to help best handle the increased stress. Guest: Art Walaszek, MD, Geriatric Psychiatrist, University of Wisconsin School of Medicine and Public Health

Episode Topics:

• How do we handle our own fear during the pandemic? 6:00
• What can you do to calm stress and anxiety before bed? 14:45
• Do you have any specific recommendations for individuals with cognitive impairment or their caretakers facing increased anxiety? 23:51

Show Notes:  All of the important issues happening right now cannot be fully covered, so we strongly encourage you to go to trusted sources for specific information, such as the U.S. Centers for Disease Control and Prevention, your state and local health department websites, and the Alzheimer's ...

COVID-19 Special Series This episode begins our pivot to addressing the important issues facing individuals during the current COVID-19 pandemic. We will speak to researchers and doctors discussing the present and future impact of the pandemic on those with cognitive impairment and those without. We are starting with a two-part series on the psychological and behavioral consequences of the pandemic. Our guest, Art Walaszek, MD, speaks on the effects of social distancing and how individuals or caregivers can stay healthy during this time. Guest: Art Walaszek, MD, Geriatric Psychiatrist, University of Wisconsin School of Medicine and Public Health

Episode Topics:

• Does social distancing negatively affect you? 5:00
• How does this affect individuals with cognitive impairment or their caregivers? 11:00
• What can we all do to prevent any negative effects from social distancing? 15:30

Show Notes:  All of the important issues happening right now cannot be fully covered, so we strongly encourage ...

This episode offers an overview of the current tools doctors use to examine Alzheimer’s disease risk in their patients, as well as new techniques in development. Our guest discusses the science behind risk testing for dementia, as well as the potential for a low-cost risk test. Guest: Sanjay Asthana, MD, associate dean for gerontology at the University of Wisconsin School of Medicine and Public Health and director at the Wisconsin Alzheimer’s Disease Research Center 

Episode Topics:

• What are the current tools that doctors have for understanding risk for dementia? 0:52
• Memory clinic patient experience: 3:02
• What is the difference between risk scores and calculators? 6:16
• Genetic testing: 7:29
• Risk and interventions for a diverse population: 13:17
• How close is a low-cost risk test? 17:39
• What do you do to reduce your risk for developing Alzheimer’s disease? 19:12

This episode explores genetic risk factors for early- and late-onset Alzheimer’s disease. Host Nathaniel Chin and guest Corinne Engelman discuss the research looking into genetic risk for Alzheimer’s disease and the uncertainty that comes with genetic testing. Guest: Corinne Engelman, MSHP, PhD, associate professor, Department of Population Health Sciences, University of Wisconsin School of Medicine and Public Health

Episode Topics:

• What are the genetic influences on a person’s risk for Alzheimer’s disease? 2:07
• What genes affect individuals with early-onset dementia? 2:56
• What is the impact of genes that counter one another? 5:34
• How much can our lifestyle choices affect our genetic risk? 7:52
• How is the genetic testing being analyzed? 9:03 
• What can at-home genetic testing tell us about Alzheimer’s disease? 10:06
• How essential is the role of genetic counselor? 11:47
• Have we found any genetic risks related to the aging process? 13:21
• What advice do you have for people interested in ...

Our guest, Dr. Kimberly Mueller, joins us to discuss cognitively stimulating activities and the impact of social engagement on brain health. Guest: Kimberly Mueller, PhD, CCC-SLP, Assistant Professor, Department of Communications Sciences and Disorders, University of Wisconsin-Madison

Episode Topics:

• What are cognitively stimulating activities? 1:25
• Recent studies: 2:50
• Are some activities better than others? 9:00
• Are Jeopardy or other “active” television shows considered cognitively stimulating? 10:23
• Are board games, crossword puzzles, and brain games considered cognitively stimulating activities? 11:22
• Is there evidence showing the benefits of social engagement? 15:08
• Advice for maintaining and strengthening brain health: 18:37

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
•         Research into biomarkers for Frontotemporal Dementia: 4:42
•         How can people help the research: 11:40

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
• Published research on amyloid duration 12:01
• Research supporting amyloid chronicity 18:14

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
• Findings from the study: 8:06
• WRAP studies outside of Wisconsin: 10:59
• What is amyloid chronicity? 15:19

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 

Key Moments:

• Defining early-onset Alzheimer’s disease and its symptoms: 0:58
• Differentiating vascular and frontotemporal dementia from early-onset Alzheimer’s disease: 7:19
• Most common memory and thinking complaints: 9:27
• Diagnosing early-onset Alzheimer’s disease: 11:15
• Issues people face after an early-onset Alzheimer’s disease diagnosis: 12:50
• Where to go for help after a diagnosis: 14:35
• Genetic considerations for patients and family members: 19:36

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
• How palliative care helps dementia: 4:49
• Further steps for families: 10:17
• What palliative care and hospice offer for grief: 16:07

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 ...

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