Will I Be Next?

Gilded Cage or Opportunity for Change?

Gilded Cage or Opportunity for Change?

My 89-year-old mother and I attended our local Alzheimer’s Association Science Night Community Dinner in Dayton, Ohio. She has dementia. One of the presentations highlighted the first Bob and Diane Fund international grant for visual storytelling about Alzheimer’s and dementia. The featured winner of the contest was Swedish photographer Maja Daniels “for her long-term project Into Oblivion, which documents life inside one of France’s geriatric hospitals. There, patients with Alzheimer’s are confined within a particular ward, with a locked door separating the occupants from the rest of the hospitals.” According to a Time Magazine article by Olivier Laurent, Daniels photographed that door hoping that the tender anguished images of the ward’s occupants would “force a rethink of our institutionalized, modern way of living” and to question certain care policies, “such as the use of confinement as an aspect of care, by seeing the effects that can have on somebody’s life.” My mind went back to my step-father, a retired Chicago police officer and proud Tuskegee Airman, who had a diagnosis that ranged from vascular dementia to Alzheimer’s. On a cold wintery day, he made a “getaway attempt,” leaving his home in Ohio, improperly dressed for the elements, on a motorized scooter with the goal of going back to his beloved Chicago. This prompted a village-wide search that involved local police and the sheriff’s department, included a bus trip alone to Chicago destined for a dangerous part of town, and incurred boatloads of prayer. Much to our relief and gratitude to God, he was found safe and sound. A dear mentor’s story, also filled with anguished searching and prayer, had...
Communities of Hope

Communities of Hope

In this season of reflection, the team at Will I Be Next? is hopeful about the future. The Amazing Grace Choir (photo) is an initiative of the Wisconsin Alzheimer’s Institute, and is reducing the stigma of Alzheimer’s disease and dementia in Milwaukee and providing quality time for caregivers and their loved ones. In Minnesota, The Roseville Alzheimer’s and Dementia Community Action Team and local library branches in the area have teamed up to provide “Memory Minders.” Memory Minders are kits that contain activities designed for library-goers with memory loss. In Roseville, they’ve been implementing a dementia-friendly community for five years! In Tempe Arizona, the mayor is spearheading the effort to have Tempe become the first Dementia Friendly city in Arizona. Five dementia friendly initiatives are underway in Sheridan County, Wyoming, population of about 30,000. The community wants to “embrace this phenomenon because we will all be affected by it.” There are five initiatives in the planning process. Initiative #3 is “Build a Health Care Continuum for Dementia Needs” that includes assuring integration of care across health and social services. Initiatives large and small are happening across the country to promote living in community with people and their caregivers who are impacted by dementia. Leaders and volunteers are growing in numbers. Walls are being torn down. Momentum continues to build. Hard work is the stuff real hope is made of. For it is hope coupled with taking action. This kind of hope translates to a new tomorrow; a future that is better than what came before it. Happy holidays from Will I Be...
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...