MUST READ

An April 19, 2019 The Wichita Eagle article and video spotlighted Janie and her husband, Pizza Hut Co-Founder Frank Carney, who has Alzheimer’s disease. Frank participated in a drug trial of Bryostatin-1, a chemical compound made by bacteria used to treat cancer and repurposed for compassionate-care trials (when nothing else has worked). Frank decided to participate in the trial because he knew it would help others. According to Janie, “…The purpose is all about love. That yes, I went in loving Frank, but what Frank taught me and what his whole life means is the love that we give to others. We want to see them improve, we want to help them realize the best that they can be.”

An April 18, 2019 Being Patient article reported that Yale University researchers revived pig brain cells four hours after death, and questioned both the ethics and implications for dementia research. According to the article, “While there was no evidence of neural activity that signaled consciousness—in fact, scientists took extra precautions to ensure that consciousness could not be regained—the experiment has implications for research on the brain, including for drug development for dementia, an area where science has made little progress for decades. Reviving brains could allow researchers to test drugs much more effectively.”

GLOBAL PERSPECTIVES

An April 17, 2019 Technology Networks article highlighted work from researchers at Yonsei University (Seoul, Korea), who developed a “much-needed novel diagnostic tool” to detect the amyloid-beta peptide in human blood, with the aim of early diagnosis of Alzheimer’s disease. According to the article, “In their latest study, published in Science Advances, Kim and colleagues have utilized a novel method in which a small molecule, EPPS, is used to break up Aβ aggregates in the blood into smaller molecules that can then be detected in small concentrations by a sensor. Their study involved samples from a control group and blood samples from individuals previously diagnosed with AD using conventional methods.”

POLITICS

An April 17, 2019 Rochelle News-Leader letter to the editor by Jerald Helland chronicled his trip to Washington, DC on April 2, 2019 with other advocates, to request additional NIH funding for Alzheimer’s disease research. According to Helland, “This year we asked each Representative and Senator to support legislation that will provide researchers, healthcare professionals, caregivers and individuals with the educational tools and resources necessary to meaningfully combat Alzheimer’s disease… Doing nothing is not an option. At the current rate the cost of care will bankrupt the U.S. Treasury. The cost of today’s research will reduce future costs and save lives and minds.”

MUST LISTEN

An April 17, 2019 WV Public Broadcasting radio segment focused on the story of Carol Ware, who is caregiver for her husband, Keith, who has Alzheimer’s disease. Finding resources has been challenging for Carol in rural Appalachia, where people have less access to health care and may have higher risk factors that cause vascular problems in the brain. “I don’t understand Alzheimer’s at all. One day he seems like he’s fine and the next he can’t even pick up his fork. Part of the time he can and part of the time he can’t,” said Carol.

PROFILES IN COURAGE

An April 14, 2019 Metro article featured the story of Shelley Sheppard, who was diagnosed with early onset Alzheimer’s disease at age 43. As part of receiving help from Nottinghamshire Healthcare’s Working Age Dementia Service, assisting people younger than 65 who have dementia (or suspected dementia), Sheppard attended a memory strategy group where she learned coping strategies and formed friendships with other people with dementia. She spoke about the positive effects of the program, “My moods were getting brighter and I no longer felt so detached from life – I had hope. At the first home visit everything was explained to me and my family and what the Working Age Dementia Service would be able to do for us. Straight away there was a friendly face giving us words of advice, encouragement and most of all reassurance.”