USA2 SPOTLIGHT

According to a June 25, 2018 UsAgainstAlzheimer’s statement, Chairman George Vradenburg and all of UsA2 applauds AARP’s $60 million investment in Alzheimer’s research. “This is a significant moment for those living with Alzheimer’s disease, their caregivers, those at risk, and all of us fighting against this progressive brain disease.  As even the most committed industry leaders experience setbacks in Alzheimer’s drug development, we must double down on efforts to make meaningful progress towards a cure, and non-traditional investments like AARP’s will be critical to this progress. And we are thrilled that AARP has brought Quest Diagnostics and UnitedHealth Group to the table with an additional investment of $15 million in the Dementia Discovery Fund,” wrote Vradenburg.

A June 25, 2018 UsAgainstAlzheimer’s blog post spotlighted the new documentary, “Remembering Gene Wilder: His Life, Legacy and Battle with Alzheimer’s Disease.” His wife Karen was his primary care partner and speaks about her caregiving journey. According to Karen, “First and foremost my feeling is that it’s very important to accept the disease. I think a lot of people are in denial and they don’t want to take the next steps in getting treatment. In my support group, they also talked about financial planning and costs, which I think is extremely important as Alzheimer’s Disease requires - in some cases - 24 hour-7 Day care. This can be very costly. I didn’t go to any support groups after Gene passed away. However, I did see a private psychiatrist to help me through the grieving process, it was very helpful for me.”

MUST WATCH

According to a June 25, 2018 “Brain Power” TODAY broadcast segment (via MSN), AARP is making a $60 million investment in the Dementia Discovery Fund, which focuses on dementia research and development of breakthrough treatments. AARP CEO Jo Ann Jenkins talks about prioritizing Alzheimer’s and brain health research. According to Jenkins, “Our members tell us the number one thing they fear the most is losing cognitive skills, or concern around Alzheimer’s disease or dementia. So that’s certainly important for us to really focus on the needs of our members and their families.” Also covered by AARP. 

PROFILES IN COURAGE

A June 18, 2018 Being Patient article focused on how a dementia diagnosis changes a marriage. Couples often struggle financially after a diagnosis, especially of early-onset, and divorcing a spouse can have tax benefits. It can also be psychologically taxing. According to the article, “Spouses start off as equal partners, but as dementia progresses the partner without dementia transitions from a partner into a supporter… A spouse who is caring for someone with dementia may find it difficult having an intimate relationship with their partner.”

REGIONAL HIGHLIGHTS

A CNY Central article announced that a national program using DNA to test for Alzheimer's disease will be coming to Syracuse this week. Attendees can meet with clinical experts to determine if they are eligible for the testing. The program is part of Alzheimer's and Brain Awareness Month.

EVENTS AND RESOURCES

Download and read the “Patient-Perspective Value Framework” report from FasterCures. For years, traditional definitions of value have left out the patient. In response, this report provides a detailed value framework and methodology designed to assess the patient perspective on value and change the value conversation in health care.