Will I Be Next?

Caring for the Caregiver in the Workplace

Caring for the Caregiver in the Workplace

On the fourth Tuesday of every month at 11:00 a.m. there’s a meeting on Colleen’s work calendar that she looks forward to. That’s when she hears stories of other people going through caregiving situations like she is, which helps her feel that she’s not alone. It’s the time when she learns what has worked for her colleagues in their caregiving experiences that she might learn from.  And it’s a time when she can bring up an issue that she and her husband are facing and get ideas from her fellow employees on how to handle it. At this time each month, Colleen attends the Alzheimer’s and Other Dementias Caregiver Support Group tele-conference meeting that is supported by her employer, a Fortune 100 company. The meeting is a tele-conference because the company has employees across the U.S. In 2016, the 15.9 million family and other unpaid caregivers of people with Alzheimer’s and other dementias provided an estimated 18.2 billion hours of unpaid care. [2017 Alzheimer’s Disease Facts and Figures.] The cost to caregivers includes loss of their income and their physical and mental health. These stressors also impact the workplaces of these caregivers, including loss of productivity, increased absenteeism and increases in health care costs. These ultimately affect a company’s bottom line, so investing in caregiving benefits, programs and services is beginning to get some traction, according to a survey of 129 mostly large employers throughout the U.S. conducted earlier this year by the Northeast Business Group on Health (NEBGH) in collaboration with AARP. Findings were reported in a July 2017 report, Caregiving and the Workplace: Employer Benchmarking Survey. For...
A No-Brain Decision

A No-Brain Decision

It was literally a no-brain decision. When I learned of the Wisconsin Brain Donor Program in 2014, I signed up. Having participated in the Wisconsin Registry for Alzheimer’s Prevention (WRAP) program, I know the importance of data mined from the over 1,500 adult children whose parents have an Alzheimer’s disease diagnosis. Researchers are fervent in their efforts to unlock the mysteries of why some people develop the disease and why others don’t—how to predict and potentially prevent the disease. Since 2002 I have undergone cognitive testing; MRIs; PET scans; lumbar punctures; a Fitness, Aging, and the Brain study; blood collection; and more as part of WRAP, the largest longitudinal study of factors (biological, medical, environmental, and lifestyle choices) that increase a person’s risk of developing Alzheimer’s disease. Committing to donate my brain upon death seems like the perfect final gift as a human test subject. Signed, sealed, done. A better understanding of that commitment came about a year ago. I was one of several speakers at a continuing education seminar at UW Hospital in Madison. Also on the agenda was a session focused on the brain, and the presenters graciously allowed me to attend. There was an aura of reverence walking into the room where a human brain lay on the table. Following an upbeat presentation by the scientists, expressing gratitude to individuals who donate of themselves, participants were invited to come forward to look more closely and touch the brain. Holding the three-pound brain in my hands, I was overcome with emotion and respect. The brain housed everything the person had ever seen, heard, and felt. Who was...
Film Outreach Development at the American Geriatrics Society

Film Outreach Development at the American Geriatrics Society

“Will I Be Next?” Producer Therese Barry-Tanner attended the American Geriatrics Society Annual Scientific Meeting in San Antonio by invitation on May 19. There, she met with members of the Clinical Research in Dementia Special Interest Group. The group is committed to networking among AGS members who are dedicated to clinical research in older adults suffering from dementia. It’s a collaborative forum for members to share findings and methodologies. The chair, Dr. Noll L. Campbell’s interest is in medication management of older adults with cognitive impairment. The purpose of Barry-Tanner’s presence at the meeting was to introduce the group to “Will I Be Next?” and to discuss two community engagement goals adopted from the National Plan to Address Alzheimer’s Disease: 1.      Accelerate the discovery for a cure for Alzheimer’s disease. 2.      Activate a culture of brain health. The project goals resonated with the Clinical Research in Dementia Special Interest Group, as their primary goal is accelerating the discovery of a cure. Some of the barriers to finding a cure to Alzheimer’s disease have included a lack of public awareness, not enough volunteers willing to participate in research, and shortage of funding. One geriatrician from Toronto has been in the field for over 25 years and said that it’s the same story when a patient is diagnosed today as it was back then — there still isn’t a cure or a way to prevent the disease. Dr. Campbell and the group are interested in partnering with the film and furthering mutual...
Remembering Why on Mother’s Day

Remembering Why on Mother’s Day

My mother, Helen Paul, was diagnosed with Alzheimer’s in the spring of 2001. My father called me earlier in the year saying she was having trouble completing her sentences – she could not remember the words she wanted to use. I made the 40-minute trip to visit and saw for myself. We knew something was wrong, but we weren’t sure what it was. It got worse. We took her to see a neurologist who had her complete a short memory test. She answered only about half of the questions correctly. That was shocking to both of us. While it wasn’t definitive, the neurologist told us it could be Alzheimer’s or another form of dementia. Later the suspicion was confirmed when an MRI showed her hippocampus (the part of the brain that is involved in forming, organizing and storing memory) to be small – much smaller than it should be, a telltale sign of Alzheimer’s. That summer my dad and I went to a class on Alzheimer’s at the local hospital, so we could learn more about the disease. That’s also where I learned about WRAP. Dr. Mark Sager gave an overview of the disease at one of the sessions and he also talked about the study. Not long after that, I signed up and began traveling to Madison every two to three years to be tested. The seven years of my mother’s decline and eventual death from Alzheimer’s disease was one of the worst things my family and I have ever been through. A little more than two years after my mother’s death, I got an idea. Because of...
Activism – With a Bang or a Blood Draw

Activism – With a Bang or a Blood Draw

Scientific progress can be long in human years. With each generation, young scientists stand on the shoulders of giants. Many never see the full impact of their work. Scientific research is a pay-it-forward endeavor. The March for Science, coming worldwide April 22, is significant because for the first time, many folks who may prefer to “let the evidence speak” will be holding picket signs and raising their voices. With the slogan, “Science, not Silence,” the organizers assert that the scientific process must be safeguarded – shouted, not muzzled. The March for Science, a self-described diverse non-partisan group, seeks to, “envision and sustain an unbroken chain of inquiry, knowledge, and public benefit for all.” “Science is first and foremost a human process — it is conducted, applied, and supported by a diverse body of people. Scientific inquiry is not an abstract process that happens independent of culture and community. It is an enterprise carried out by people who seek to expand our knowledge of the world in the hope of building a better, more informed society.”[1] This important movement is a battle cry to safeguard science. It sounds a necessary alarm about the fragility of science and the need for people to publicly and bravely fight for its existence. The urgency to safeguard scientific research is especially evident in longitudinal studies that are making progress to reverse clear death spirals—for example, the way many family history studies are figuring out how to stop Alzheimer’s disease. The WRAP study has an unbroken chain of data from over 1,500 subjects since the year 2001. The study tracks biological and cognitive changes in people at high risk of Alzheimer’s...
Short Work-in-Progress Clip Screened at International Neuropsychological Society Symposium

Short Work-in-Progress Clip Screened at International Neuropsychological Society Symposium

Will I Be Next? was featured at an important symposium entitled “The Next Generation: A Look at Cohort Studies of People at Risk for Alzheimer’s Disease” at the 45th annual conference of the International Neuropsychological Society in New Orleans on February 3rd.  Producer Therese Barry-Tanner kicked of the symposium with a short work-in-progress clip of the documentary providing more than 200 researchers who attended this session with a different perspective of the research process – that of the human research subjects. From there, the symposium transitioned to a discussion of several longitudinal cohort studies including their seminal findings and future directions. Cohorts included: The WRAP study (University of Wisconsin, PI: Sterling Johnson, PhD) The Adult Children Study (Washington University, PI: John Morris MD; presented by Jason Hassenstab, PhD) The BIOCARD Study (Johns Hopkins University, PI: Marilyn Albert; presented by Anja Soldan, PhD) The Offspring Study (Columbia University, PI: Jennifer Manly, PhD) The Vanderbilt Memory and Aging Project (Vanderbilt University Medical Center, PI: Angela Jefferson, PhD) The key findings from these studies focused on neuropsychological and biomarker changes in people at risk for Alzheimer’s disease, characteristics that may pose resilience against cognitive decline and implications for participant selection in future trials for Alzheimer’s prevention. In his introduction to the clip, WRAP PI Sterling Johnson said that one way the film is important to scientists is that it helps researchers understand what participants go through. Following the symposium, Anja Soldan of John Hopkins said, “This is a very moving film that tells the human side of what’s it’s like to have lived with and cared for a loved one with Alzheimer’s disease....