USA2 SPOTLIGHT

Join Help For Alzheimer’s Families live chat, “Family Dynamics in Caregiving: How to Improve Communication & Make Decisions Together,” with the A-LIST’s own Terry Frangiosa. Frangiosa, a research investigator and former caregiver, will discuss family dynamics in caregiving including hiring in-home care for a loved one with Alzheimer’s, potential sibling challenges, improved communication and decision-making. November 19, 2019 at 1pm (EST). A-LIST is an initiative of UsAgainstAlzheimer’s.

MUST READS

A November 4, 2019 The New York Times article spotlighted a particular member of the extended Medellin family which researchers have been studying for years because they carry a familial genetic mutation (Presenilin 1) causing hereditary, early-onset dementia. She has an extremely rare mutation of her APOE gene (Christchurch mutation) and experienced no cognitive decline until her 70’s, even though her brain was wracked with amyloid plaques. According to the article, “Since the woman had huge amounts of amyloid but few other Alzheimer’s indicators, “it actually illustrates, to my knowledge for the first time, a very clear dissociation of amyloid accumulation from tau pathology, neurodegeneration and even cognitive decline,” he [Dr. Yadong Huang of Gladstone Institutes] said.” Also covered by Science Magazine, Science Alert, and others.

A November 4, 2019 STAT article focused on the immediate reaction, “caution as well as an eagerness,” to the announcement that Shanghai Green Valley Pharmaceuticals is taking its Alzheimer’s disease drugOligomannate (GV-971) to market this year in China. The global Phase 3 trials, which will include U.S. sites, launches in 2020. According to the article, “…The upcoming global trial will try to show how the drug seems to affect cognition. While many in the United States were caught off guard by the approval, [Cleveland Clinic’s Dr. Jeffrey] Cummings said it should perhaps not be surprising that companies elsewhere are making advances in Alzheimer’s. “We are in a period of global innovation that we’re not quite used to,” he said. “This is a global disease and a challenge to the health and dignity of the elderly around the world.””

ETHICS

An October 30, 2019 Houston Chronicle article reported that an appeals court judge in Houston, who has Alzheimer’s disease, continues to sit on the bench. Her sons filed for guardianship post diagnosis, as the family feuds over control of her estate. According to the article, “Through the guardianship filing, the Higley sons referenced previous efforts to have the justice removed from her post, but it is unclear whether those efforts come from family members, coworkers or elsewhere… The sons called Laura Higley’s condition “in the moment” only… she struggles to remember information relayed to her or people she spoke with just a day before, according to the court filing.”