MUST READS

A January 25, 2019 JAMA Network article warned people to be wary of false claims related to treatments for Alzheimer’s disease, other dementias or general brain health. Dietary supplements and medical interventions to improve cognition and brain health are readily available and may seem to be backed by science, but the evidence may lack rigor and scientific integrity. According to the article, “Clinicians must distinguish testimony and cargo cult science from quality medical research and explain when interventions may appear to represent pseudomedicine. While unethical forces promote the existence of pseudomedicine, an educated community of physicians and patients is the starting point to counteract these practices.”

PATIENT AND CAREGIVER VOICES

A January 22, 2019 Outsourcing Pharma article spotlighted the rise of “patients as partners,” incorporating the patient voice into clinical development plans, including clinical trials. Standards and metrics to incorporate this data is lacking, however, this continues to change as organizations and agencies work to establish a common framework and to integrate the patient voice beyond clinical development. According to the article, “…It’s paramount for the industry to engage with patients, patient advocacy groups and other stakeholders to develop proper frameworks that can reliable measure benefit-risk and contribute to meaningful health technology… Working with a patient community to develop a natural history database, for example, enhances the ability to understand the benefits, risks, and patient experience with a new therapy in a real-world population.”

PROFILES IN COURAGE

A January 28, 2019 The Denver Post article profiled Tony and Josie Sanchez, ex-spouses who both have Alzheimer’s disease. Tony is fighting to retain his independence by going to the gym and exercising regularly, but Josie is more resigned, residing in a nursing home. According to the article, “Tony is slowly beginning to accept the finality of Alzheimer’s. He says he’s made his peace with God. “It’s probably one of the best ways to go,” he says. “There’s no blood. There’s no pain.” The pain, Tony says, is for the caregivers. He’s heard about the ones who become depressed while tending to loved ones with Alzheimer’s…”

FINANCES

A January 25, 2019 Valley Courier article encouraged people to take a close look at their finances, as tax day approaches, especially as it relates to potential impacts of Alzheimer’s disease and other dementias. According to the article, “Beyond anticipating future medical expenses, it is important for those who are serving as unpaid caregivers for loved ones to understand that they may be eligible for tax benefits from the Internal Revenue Service (IRS) if they have paid some care costs out of their own pockets. Tax rules are complex and can change, so individuals are advised to consult with a tax adviser or accountant.”

YOUTH FOCUS

STAR U from Columbia University is an eight-week summer training program for undergraduates with the aim of increasing diversity within the field of neuroscience of aging. In addition to individualized faculty mentorship, participants will engage in seminars and professional development activities. All applications are due by February 15, 2019. 

EVENTS AND RESOURCES

Mark your calendar early for Dementia Action Alliance’s 2019 Dementia Arts Fest. June 20-22, 2019 in Atlanta, Georgia. Artworks created by individuals living with dementia will be exhibited at the 2019 Re-Imagining Dementia Conference at the Westin Buckhead Hotel.