USA2 SPOTLIGHT

A Carlen Maddux blog post featured UsAgainstAlzheimer’s advocates Geri and Jim Taylor. Geri, who has early-onset AD, not only accepted her diagnosis, but works to continually improve personal tools and techniques to compensate for her changing condition. Jim, however, struggled to come to terms. According to the post, “I [Jim] began to reemerge after a few weeks. Geri’s patience and understanding helped me work out of it pretty quickly…When I came back to the table, we talked and talked. Finally, we decided Alzheimer’s is not going to run our lives. We are going to live as fully as we can and not worry about tomorrow.”

DISPARITIES SPOTLIGHT

A December 17, 2019 NPR All Things Considered radio segment focused on the importance of recruiting African American and Hispanic people into clinical Alzheimer’s disease trials, especially genetic studies. Both groups have significantly higher risk of developing AD than their white counterparts. ““We actually need to have thousands and thousands of individuals participate in these studies to really understand the genetics of Alzheimer's disease," he [Case Western Professor Jonathan Haines] says. Case Western is trying to minimize the burden on participants by allowing them to provide blood samples and take medical tests in their own homes.”

MUST READS

A December 17, 2019 The Harvard Gazette article spotlighted work by Massachusetts General Hospital researchers to predict Alzheimer’s disease. They created an algorithm, via machine learning, to predict risk of new dementia diagnosis up to eight years in advance. The tool utilizes data previously-generated from routine clinical care. “With this approach we are using clinical data that is already in the health record, that doesn’t require anything but a willingness to make use of the data,” said Roy Perlis of the MGH Center for Quantitative Health.

A December 17, 2019 WBUR article looked at a clinical trial assessing if better lighting can help calm symptoms of dementia such as agitation and sundowning. Participating New York and Vermont assisted-living and long-term care facilities hung bright LED lights. The study found that such light exposure throughout the day increased sleep quality, appetite and social interaction, and decreased depression and agitation. According to the article, “For seniors with Alzheimer’s, lighting interventions appear to give caretakers a powerful tool, if not a silver bullet, to reduce negative symptoms that often go hand-in-hand with a disease that affects more than 5 million people in the U.S.”

PATIENT AND CAREGIVER VOICES

A December 18, 2019 The Irish Times Life & Style piece by Ciara Jordan shared her own experience with her mom’s Alzheimer’s disease. The five-years-and-counting long goodbye is a sort of ‘limbo grief,’ which comes in waves, that Jordan does not feel entitled to. “It was her loss of vanity that was almost the biggest stab of grief. The first time I picked her up from her nursing home I was gung-ho: “not letting my mother go back to that place full of old sick people – she would hate it”. Then I realised she didn’t hate it. She fitted in with the old, sick people. She actually seemed to like it,” wrote Jordan.