Dementia Matters

Being Patient is an online news source dedicated to providing research news, caregiver information and resources related to Alzheimer's disease. Being Patient founder Deborah Kan discusses how her personal experiences led her to develop the website, as well as how online resources and communities can help empower individuals affected by memory loss. Guest: Deborah Kan, journalist, founder of beingpatient.com Episode Topics: What inspired you to leave a career in journalism and launch Being Patient? 0:58 How do you decide on the topics you cover? 4:18 How does social media help build a community through connection? 9:14 Have you found a certain communication platform that has better reach? 11:25 What have you learned from caregivers through your work? 13:49 Can you offer recommendations for finding reliable online sources for health information? 18:58 Why is it important for the scientific community to have a separate organization that discusses the research? 23:34 What topics in Alzheimer's disease research h

Dr. Jason Karlawish discusses society’s role in addressing care for individuals with memory loss, as well as current stigmas around Alzheimer’s disease, Wealthcare, and his cautious optimism for the future of Alzheimer’s disease research and care. This is the final episode in our four-part series with Dr. Karlawish on his new book, "The Problem of Alzheimer's: How Science, Culture, and Politics Turned a Rare Disease Into a Crisis and What We Can Do About It.” Guest: Jason Karlawish, MD, co-director, Penn Memory Center Episode Topics: How do you live a good life when you’re slowly losing your ability to live life? 0:56 How do home and work fit in your life after a mild cognitive impairment diagnosis? 2:21 What are your recommendations on home looseness and time slips? 4:34 How can we improve care facilities? 10:04 What is Wealthcare? 11:19 Why haven’t caregivers been given greater support in our system? 13:32 What do you mean by time, task and truth in caregiving? 15:13 What are steps we can take to improve

Dr. Jason Karlawish joins the podcast for the third installment in our series on his new book, "The Problem of Alzheimer's: How Science, Culture, and Politics Turned a Rare Disease Into a Crisis and What We Can Do About It". In this episode, Dr. Karlawish discusses the healthcare system’s role in Alzheimer’s disease and what it needs to do better to care for individuals with dementia and help them live well. Guest: Jason Karlawish, MD, co-director, Penn Memory Center Episode Topics: What did you learn about the healthcare system in your work with Beverly and Darren Johnson? 1:33 What do we need in healthcare to better care for individuals with cognitive impairment? 3:25 Do we need more memory care specialists in the field, or can primary care physicians do this work? 5:32 How do we encourage more individuals into enter the geriatric care medical field? 7:38 How do we increase the number of memory centers and how should they function within our current healthcare system? 9:22 Why is it important to discuss del

Dr. Jason Karlawish returns to the podcast to continue our discussion on his new book, The Problem of Alzheimer's: How Science, Culture, and Politics Turned a Rare Disease Into a Crisis and What We Can Do About It. In this episode, Dr. Karlawish discusses pivotal cultural and political moments that influenced Alzheimer’s disease research, as well as the possibilities of drug treatments in the future. Guest: Jason Karlawish, MD, co-director, Penn Memory Center Episode Topics: Who is the unwitting revolutionary? 1:11 What happened to the early German scientists researching Alzheimer’s disease? 6:03 What essay was released in 1976 and why was it pivotal to Alzheimer’s research? 7:25  How did the changes in psychiatry, geriatric care and gender roles affect Alzheimer’s disease research? 10:42 What was the internal struggle over a name? 14:51 What were key moments in U.S. political history that influenced Alzheimer’s disease? 18:19 Where do you think the U.S. went wrong in approaching Alzheimer’s disease? 21:05 Ho

Physician and author Dr. Jason Karlawish joins the podcast for the first installment of a four-part series centered around his new book, The Problem of Alzheimer's: How Science, Culture, and Politics Turned a Rare Disease Into a Crisis and What We Can Do About It. In the book, Karlawish blends history and science to detail the most important breakthroughs in diagnosing and treating Alzheimer’s disease. He also offers an argument for how we can live with dementia and proposes reforms we can make as a society that would give caregivers and patients better quality of life. In this episode, Dr. Chin and Dr. Karlawish discuss Alzheimer’s disease in a historical context and the disease's changing meaning. Guest: Jason Karlawish, MD, co-director, Penn Memory Center Episode Topics: Why did you choose to focus on the history of Alzheimer’s disease? 1:37 Why is it so important to use correct terminology in the clinic? 2:40 What do you say to patients when you diagnose Alzheimer’s disease? 3:54 How do you help people un

In a recent study, health economist Lauren Nicholas, PhD, found older adults who go on to be diagnosed with dementia are more likely to miss payments on bills as early as six years before a diagnosis. Dr. Nicholas joins the podcast to discuss her research findings, how financial symptoms could be used as early predictors of dementia, signs that may indicate financial trouble due to dementia, and resources for managing your own or a loved one’s finances early. Guest: Lauren Nicholas, PhD, associate professor, Johns Hopkins Bloomberg School of Public Health Episode Topics: How was the study designed? 1:00 Who did you look at for in the study? 5:09 What are your findings? 6:12 Do you think the financial impact is different based on the amount of family members? 9:24 What types of resources are available? 11:01 What do you hope this research will lead to? 13:32 What are clues to watch for financial trouble due to cognitive decline? 15:47 How do you see financial information being useful for understanding dementia

Growing research has shown that music can have a profound impact on individuals with memory loss. Right to Music is an organization dedicated to promoting use of personal music by families and professionals caring for people with dementia and other cognitive challenges. Founder Dan Cohen joins the podcast to discuss how music can affect memory loss and tips for starting music therapy. Guest: Dan Cohen, founder, Right to Music Episode Topics: What inspired you to introduce music to people with memory loss? 1:10 What brought you to music? 2:36 What has research found around music therapy? 4:56 What do you believe it is about music that is unique? 11:31 Does genre of music matter? 14:16 How can music help bring people together? 17:00 How do you recommend a person start? 18:52 Do you have any additional tips? 20:20 Which songs help you on your playlist? 21:51 Find Dementia Matters online Follow us on Facebook Follow us on Twitter  

Visiting the emergency department can be a challenging experience for individuals with memory loss and their caregivers. Dr. Manish Shah joins the podcast to discuss the difficulties people with dementia face in the emergency department and offers tips for making the most out of a visit. Guest: Manish Shah, MD, MPH, professor, BerbeeWalsh Department of Emergency Medicine, University of Wisconsin School of Medicine and Public Health Episode Topics: How many older adults visit emergency departments annually? 1:00 Why are adults with dementia twice as likely to seek emergency care compared to older adults who don't have dementia? 2:19 What are some of the difficulties that people with dementia may experience when they're in the emergency department? 5:10 Is there training for emergency department physicians to modify how they approach people with dementia? 7:22 Do you have any recommendations to offer that would improve the visit in the emergency department for people with dementia? 9:02 What is your team of res

Dr. Lindsay Clark’s new study will evaluate the psychological consequences of disclosing amyloid test results to cognitively unimpaired adults. Dr. Clark joins the podcast to define amyloid accumulation and discuss how her study will examine the process of revealing amyloid results to research participants in Alzheimer’s disease research studies. Guest: Lindsay Clark, PhD, assistant professor, University of Wisconsin School of Medicine and Public Health Episode Topics: What is amyloid accumulation and its relationship to Alzheimer’s disease? 1:13 How are you measuring amyloid in living people? 3:14 Are newer methods like PET scans reliable? 5:56 Do patients learn the results of these scans? 6:20 Do research participants ever learn their results? 7:30 Who is the target population for studying amyloid scans? 8:44 Why does disclosing the results take so many careful considerations? 9:35 What do you think are the components of a good disclosure? 11:48 Are you disclosing specific numbers of the results? 14:16 Why

In this special holiday bonus episode, we are joined by poet laureate, writer, and senior outreach specialist, Dr. Fabu Carter, to discuss the impact of poetry on memory loss and a reading of her poem “For Our Beloved Elders with Memory Loss." Guest: Fabu Carter, PhD, MA, Senior Outreach Specialist, University of Wisconsin of Medicine and Public Health Episode Topics: What is the importance of poetry on Alzheimer’s Disease? 1:20 Reading of "For Our Beloved Elders with Memory Loss" 4:51

Recent developments have introduced a blood-based test that could predict Alzheimer’s disease, with more of these tests currently in development. Dr. Sterling Johnson joins the podcast to discuss the significance and accuracy of these blood tests, as well as the impact it will have on Alzheimer’s disease research and care. Guest: Sterling Johnson, PhD, professor of medicine, University of Wisconsin School of Medicine and Public Health Episode Topics: What do biomarkers like brain imaging and cerebrospinal fluid tell us about Alzheimer’s disease? 1:18 What is the significance of a blood-based biomarker test? 6:08 What does the blood test tell us about brain health? 8:14 How accurate are the tests? 9:02 How are proteins like amyloid or tau found in the bloodstream? 10:28 What kind of precautionary steps should be taken before these tests can become readily available? 12:23 When do you think these tests will become available? 15:30 What do you think is the timeline for the tau protein blood tests? 16:26

A study from the University of Wisconsin found 40% of geriatric memory patients were deficient in at least one vitamin linked to brain health. Vitamins tested in this study included B1, B6, B12, and D, all of which play an important role in brain health. Dr. Robert Przybelski joins the podcast to discuss his study, the influence of vitamin deficiency on brain health, and the potential consequences of vitamin deficiency when treating a patient for a memory condition. Guest: Robert Przybelski, MD, associate professor, University of Wisconsin School of Medicine and Public Health Episode Topics: Why is it important to look for vitamin deficiencies during a memory evaluation? 1:19 What were your research findings? 2:03 What do you focus on during a memory evaluation? 5:13 Is there a difference between normal vitamin levels and optimal levels? 6:40 What supplements do you take? 7:42 What diet do you think promotes brain health? 8:06 Why does your research look at general patients rather than participan

For individuals concerned with memory loss, the first few steps for screening and diagnosis can be the most intimidating. Dr. Cynthia Carlsson discusses recent progress in Alzheimer’s disease research, health disparities some groups face with the disease, and advice for individuals and caregivers who have concerns about memory loss. Guest: Cynthia Carlsson, MD, MS, professor, University of Wisconsin School of Medicine and Public Health, and director, Wisconsin Alzheimer’s Institute  Episode Topics What is the current state of Alzheimer's disease research? 1:41 Is there more funding toward Alzheimer's disease research and care? 2:59 How has awareness of Alzheimer’s disease impacted diagnosis? 4:12 What are the health disparities we see in Alzheimer’s disease? 7:46 What are the benefits for early screening for Alzheimer’s disease? 11:07 How does an early diagnosis affect family members or caregivers?  13:36 Where should individuals concerned with memory loss look for resources? 15:06 Are there ramifications in

On October 27th, the NBC drama series This Is Us will return for a fifth season. An integral storyline in the show is the diagnosis of one of the main characters, Rebecca Pearson, with Mild Cognitive impairment (MCI). In this bonus episode, our host Dr. Chin helps define MCI and its potential causes and misconceptions. Episode Topics: What is Mild Cognitive Impairment? 1:37 Difference between MCI and Dementia: 3:29 Potential causes for MCI: 4:40

As intermittent fasting has risen in popularity over the last decade, researchers have been exploring its long-term effects on physical health. Dr. Mark Mattson joins to discuss his research on metabolic switching, caloric restrictions, and the cognitive benefits from intermittent fasting. Guest: Mark P. Mattson, PhD, Johns Hopkins University School of Medicine, Department of Neurology Note: It is best to talk with your healthcare provider before engaging in intermittent fasting. Episode Topics: Defining Intermittent fasting: 1:08 How long does it take for a metabolic switch? 2:02 How is this process different from normal dietary recommendations? 3:44 What did you find in your research on the effects of intermittent fasting on health? 5:36 Are there cognitive benefits to intermittent fasting? 8:12 Can intermittent fasting and caloric restrictions improve the brain’s health? 9:49 How does our modern lifestyles affect our brain and overall health? 16:07 Is there any evidence that one way of intermittent fastin

Aerobic exercise is often a recommendation for maintaining cognitive well-being, however its true connections to brain health are still being investigated to learn its effects on Alzheimer’s disease. Wisconsin ADRC exercise physiologist and researcher Max Gaitán joins the podcast to discuss the recent pilot study “Protocol of Aerobic Exercise and Cognitive Health (REACH)” and the study’s future research into the impact of aerobic exercise on brain health. Guest: Max Gaitán, MEd, Research Specialist, University of Wisconsin School of Medicine and Public Health Department of Medicine Episode topics: What were the goals for the REACH study? 1:56 Was it difficult to recruit participants for the study? 3:18 What else did you learn from your participants?  4:22 Did you see any issues with retention in participants? 5:06 What were the results of the study? 5:42 What does improved glucose metabolism in the brain mean? 6:57 Does exercise improve the health of the brain cells? 7:43 What are the goals of studying metabo

Human factors engineering is the study and design of interactive systems, tools and technologies to best assist individuals in need. We are joined by Nicole Werner, PhD, an engineer working on a mobile technology to serve the lives of informal caregivers. Guest: Nicole Werner, PhD, Harvey D. Spangler Assistant Professor in the Department of Industrial and Systems Engineering, College of Engineering, University of Wisconsin-Madison Episode topics: Explanation of the field of human factors engineering: 1:05 The challenges of informal caregiving: 2:22 What are some useful user friendly features for the app? 5:32 How is the app being tested and improved? 11:38 How do you know when the app will be ready for launch? 14:15 Does your lab work with other technology tools for individuals with dementia and their caregivers? 15:55 As consumers, what are the essential features that we should look for in technology assistance?: 18:10 Have you encountered any tools you’ve found helpful? 20:07 What have you learned about car

Almost two-thirds of Americans with Alzheimer’s disease are women. In the Alzheimer’s disease research field, there is an interest in understanding the sex-specific differences in the risk and development of this disease. Dr. Michelle Mielke joins to discuss some of these differences as well as how pregnancy and menopause might affect cognition. Guest: Michelle Mielke, PhD, Mayo Clinic Rochester Episode Topics: What are the sex differences in the development of dementia? 4:09 What are explanations for these differences? 7:57 What role does pregnancy and menopause play in the development of cognitive disorders? 10:09  Could menopausal hormone replacement therapy affect the cognitive development of dementia in individuals? 14:32 Are there sex differences in the genetic risk of APOE? 21:30 What do you do in your personal life to maintain brain health? 24:31

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 development of Alzheimer’s disease? 20:3

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