Today's Top Alzheimer's News
USA2 SPOTLIGHT
A June 18, 2016 UsAgainstAlzheimer’s blog post by LatinosAgainstAlzheimer’s and Activist advocate Lisette Carbajal reminisced about her father and highlighted the impact of Alzheimer’s on her family. According to Lisette, “But as the weeks, months, and years pass, I’m coming to terms with the reality of this disease. He has forgotten how to do the things he loved the most; things that me--as his little girl--loved doing with him. He can’t hang the curtains, fix the pipe under the sink, or repair the fence that he loved building and painting. My father is one of the estimated 200,000 Latinos touched by Alzheimer’s or dementia and he’ll never again be the handyman he used to be.”
MUST READS
A June 19, 2016 Golf Channel blog post by David Feherty highlighted his father’s decline with Alzheimer’s. According to Feherty, “I think Alzheimer’s is worse than death, because at least dead people aren’t around any more. The vehicle my father used to move around this world freewheels on down the road, but the man behind the wheel is nowhere to be found except in the memories of those who loved him. I want to remember who my dad was, and not what he has become. I remember him racing me up the steps at Ward Park on the way home from church, and never letting me win until the day I did. I remember how loud he sang in church, and how embarrassed I was because of it. I remember the smell of the whiskey on his breath and the rasp of the stubble on his chin as he kissed me goodnight and told me how proud of me he was, every night, and I remember pretending to be asleep, every time.”
A June 17, 2016 USC News article reported that the USC Schaeffer Center for Health Policy & Economics joined the Brookings Institution to launch the Schaeffer Initiative for Innovation in Health Policy. According to the article, “Wyden, ranking member of the Senate Finance Committee, cited several examples of Medicare enrollees suffering from coverage that lacks flexibility to meet their needs, including a patient afflicted by a stroke and another facing Alzheimer’s disease…Further, he said Medicare must help customize the care that people need. Wyden noted a current pilot project of the Affordable Care Act that allows Alzheimer’s patients to stay at home, which has produced improved outcomes at a lower cost.”
A June 17, 2016 Forbes.com opinion piece by Howard Gleckman highlighted a vote by the Senate Appropriations Committee to “to abolish the State Health Insurance Assistance Program (SHIP) by quietly eliminating the entire $52.1 million in federal funding that keeps the service going.” According to Gleckman, “In 2014, about 15,000 counselors in 3,300 state and local programs provided direct personal assistance to about 3.5 million older adults and younger people with disabilities. More than half of the counselors are unpaid volunteers. SHIP does not subsidize Medicare. It only provides advice. As more Baby Boomers age, demand for SHIP services is growing, and the program has been struggling for years with a budget that essentially has been flat. But the Senate panel has decided it will no longer slowly starve the program. It will kill it.”
A June 17, 2016 Wfla.com article reported that “Publix on Friday announced that one of the company’s board members, Carol Jenkins Barnett, 59, has been diagnosed with younger onset Alzheimer’s disease and has stepped down from her position.” According to the article, “Carol Jenkins Barnett is the daughter of George Jenkins, who founded Publix in Winter Haven in 1930…Due to her recent diagnosis, Mrs. Barnett has voluntarily decided to step down from the Board of Publix Super Markets, effective immediately, to focus on her health and spend quality time with her family.”
UPCOMING EVENTS AND RELEVANT WEBINARS
June 21 from 2:30-3:30 p.m. EST - The Patient-Centered Outcomes Research Institute (PCORI) and UsAgainstAlzheimer's invite you to a Congressional briefing next Tuesday in the Dirksen Senate Office Building, Room SD-430. The focus of the briefing is on: shifting Alzheimer’s disease research from a researcher-driven to patient-centered focus to help accelerate the development of effective treatments, improve quality of care, and support family caregivers. The briefing is presented by PCORI with UsAgainstAlzheimer’s, a partner with Mayo Clinic, UCSF/Brain Health Registry, and the University of Florida in the first ever Alzheimer's and Dementia Patient and Caregiver Powered Research Network. The briefing's aim is to: raise awareness of caregivers’ needs, highlight PCORI’s research and provide health care professionals and advocates an opportunity to discuss where additional research is needed.
June 28th, 12:00pm EST - 1PM EST - Alzheimer's and Dementia PPRN: Opportunities for Collaborations in PCORnet | Join WebEx meeting here(Meeting number: 733 558 176 | Meeting password: 1234) Join by phone: 1-855-244-8681 Call-in toll-free number (US/Canada) 1-650-479-3207 Call-in toll number (US/Canada) Access code: 733 558 176