Will I Be Next?

The Daughter Dilemma

The Daughter Dilemma

When I was 36 years old, my brother-in-law called me to say that my father had called the police to his house. My father said that a gang of people had come in, propped the door open, and started hauling things out. The police arrived to find everything in good order (well, in as good of order as a cluttered house with 50 years’ worth of stuff can be). They asked if my father was on any medication, and had he forgotten to take it.  Clearly, whatever had happened to my father had been in his mind. My stomach sank when I got that call. It sank because I’d been able to ignore the small signs up until now that my father was beginning to not be able to take care of himself. It sank because his mind was going. It sank because thieves really hadn’t hauled things from his house, and that meant that I would have to do it. Shortly after this, my father was declared incompetent by two physicians. It was unsafe for him to live on his own. I lived an hour away and had a 7-year-old child of my own; it was not possible for me to check in on him every day nor spend large parts of my day with him. Briefly, I considered quitting my jobs, asking my husband to quit his job, and moving back to our hometown. This was not feasible in the short term. Nor did we know what the long term was likely to bring. This is precisely the situation that many daughters in America face: how to...
XPRIZE Heightens Race for Early-Stage Alzheimer’s Biomarker

XPRIZE Heightens Race for Early-Stage Alzheimer’s Biomarker

For most of human history, the average life expectancy was 18 years. Today it approaches 79. The age at which more people die than at any other is now 86 and advancing. A troubling coincidence about our new age of longevity is that one in three people over 85 suffers from Alzheimer’s disease or related dementias. Overwhelmingly, people of all ages are now saying that the scariest downside of a long life may be Alzheimer’s disease. Alzheimer’s stands out from the rest of age-related illnesses in that it’s 100 percent fatal and essentially 100 percent untreatable. Soon, the economic burden of dealing with Alzheimer’s is expected to rise to 1% of the world’s economy. Along comes the XPRIZE, which offers a challenge to the Alzheimer’s conundrum. Administered by the XPRIZE Foundation—a non-profit global leader in solving the world’s grandest challenges—XPRIZE creates and manages large-scale incentive prized competitions. XPRIZE challenges innovation from small teams around the world to participate in solving a grand challenge in a competitive format, like a game. XPRIZE offers prizes up to $30 million, highly leveraged through global crowdsourcing. A team of Alzheimer’s experts has been formed to work towards creating an XPRIZE for eliminating Alzheimer’s disease. Dr. Ken Dychtwald, Founder and CEO of Age Wave, envisions putting an end to Alzheimer’s disease using 21st century techniques and technologies. He references his work with Dr. Jonas Salk and hearing that in the 1940s when the predominant thinking was that polio was simply a part of life and what was needed was more iron lungs. Salk said no, we have to stop this disease. Likewise, Dychtwald proclaims,...
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...