BrightFocus Joins Effort To Assess Cognitive Impact of Alzheimer’s Caregiving

Martha Snyder Taggart, BrightFocus Editor, Science Communications
  • Science News
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The Mind You Protect Could Be Your Own

Is there anyone who hasn’t “put a face” on Alzheimer’s? We only have to picture our grandparents, parents, spouses, friends, neighbors, or even siblings who have struggled with the disease.

Yet there’s another face hidden in the picture. Right now, you might not recognize it; someday it could be your own.

Currently, in the United States, more than 15 million family caregivers provide care to the nation's five million (and climbing) individuals with Alzheimer's and other forms of dementia. With Alzheimer's incidence projected to triple to 14 million people by 2050, Generation X, Y, and Z-ers born well after the Baby Boom may find themselves in this role.

Men and women serving as family caregivers typically are unpaid, and are often made financially vulnerable due to the added responsibilities they are shouldering. Worst of all, they are six times more likely than non-caregiver peers to develop Alzheimer’s themselves, due to a combination of stress and self-neglect brought on by scarce time, diminished resources, and other factors.

Like Alzheimer’s itself, the burdens of Alzheimer’s caregiving are a crisis in the making that needs to be addressed society-wide. That’s why, this week, BrightFocus and partners announced they are embarking on the Health-eBrain Study, a pioneering online health study that will use online brain performance tests to assess the cognitive toll on those who provide family caregiving for Alzheimer’s and dementia patients.

The study is being undertaken as a shared initiative among the three nonprofits behind the 21st Century Brain Trust (21CBT), who include BrightFocus Foundation, the Geoffrey Beene Foundation Alzheimer’s Initiative, and USAgainstAlzheimers. Joining them in the effort are Lumosity, a leading brain training program; AnthroTronix, an innovator in the field of mobile health technology; and other prominent Alzheimer’s-serving organizations.

The 21CBT®/Caregiver Health-eBrain Study will be the first of its type to compare the brain health profile of Alzheimer’s/dementia caregivers with aggregate scores in the general population. Utilizing Lumosity’s Brain Performance Test, a self-assessment will be completed online in fewer than 30 minutes. Participation is open to the first 10,000 caregivers who go to the study site or link to it from one of the 21CBT partners.

“We believe the 21CBT/Caregiver Health-eBrain Study serves to support the caregiver community and advance research at the same time,” said Stacy Haller, BrightFocus CEO and 21CBT founding partner, in a press release announcing the venture. “This is a new avenue of science, one that begins to engage caregivers in the research process for themselves and their loved ones.”

ReACT, AARP, Host Event Focused on Workplace Support for Caregivers

BrightFocus’ friend and partner Meryl Comer, president of the Geoffrey Beene Foundation Alzheimer’s Initiative, announced the study at a Washington, D.C., family caregivers’ event held this week (September 29). There she appealed for 2,500 caregivers to sign up in the first month.

A caregiver herself, Comer has just published a personal memoir, Slow Dancing with A Stranger, where she describes the past 12 years caring for her husband, Harvey Gralnick, MD, who was diagnosed with early Alzheimer’s at age 58, when he had reach the apex of his career as a National Institutes of Health oncologist and division chief.

Comer described her confusion over the outbursts and belligerence that preceded her husband’s eventual diagnosis. “At work, they thought it was a problem at home, and at home, I thought to myself, ‘what the devil is going on at work?’” she said.

‘Try getting a car away from a 56-year-old man!’—Comer challenged her audience.

A little later, as the illness continued its course, Comer had to strategize and hide her husband’s beloved sports car from him. “You try and get a car away from a 56-year-old man!,” she challenged the audience. But once the vehicle was out of sight, it was forgotten.

Comer, a former business news anchor and producer, is unique for the public way she has dealt with her experience. “When you care for someone that long, you lose your identity,” she explained. “If I hadn’t flipped the pain and become an advocate, Alzheimer’s would have taken me down.”

In contrast, many individuals in similar situations don’t identify themselves as Alzheimer’s caregivers, for a variety of reasons. They may be embarrassed and protective of their own privacy, possibly influenced by the pervasive stigma associated with a disease that is poorly understood and greatly feared. It’s also a sensitive issue because many family members have adopted the caregiving role out of love—and to call themselves a “caregiver” seems to denigrate their relationship and emotional bond with the person they’re caring for.

Another factor is that, for the 75 percent of caregivers who are also employed outside of the home, many fear losing their jobs due to the adverse impact that caregiving can have on their workplace productivity and attendance. It adds an estimated 20 additional hours of work each week to their schedule, and their work might suffer unless policies like flex time and open-ended leave policies allow them to make up the time. Without those, they might be inclined to fly “under the radar” and hope their caregiving goes undetected.

Yet because these caring individuals are making invaluable and irreplaceable contributions, and are so good at what they do, there’s a groundswell of support to convince employers, public policymakers, and others to recognize and put a value on the caregiving role. And to warn about caregivers’ own vulnerability.

“Our caregivers are like an army, yet they don’t get anywhere near the appreciation they deserve,” said Debra Whitman, a policy executive at the American Association of Retired Persons (AARP), which co-hosted this week’s conference.

With 37 million members age 55 and older, AARP has put considerable weight behind the group which organized the conference, the Respect A Caregiver’s Time (ReACT) coalition.  ReACT’s 40 member groups represent employers, academia, nonprofits, and government groups, 
together focused on changing workplace attitudes and building more supportive policies around caregiving, including flextime, leave policies, and social support. It also advocates at the national level for greater awareness and positive change.

One of REACT’s most recent accomplishments is an infographic entitled The Caregiver Experience: A Snapshot of the Caregiver Journey, which was distributed at the conference. It depicts all the different functions executed in a single day by a typical caregiver. Besides their jobs and roles in their homes and communities, Alzheimer’s caregivers research and coordinate complex legal and financial matters; make care arrangements; transport Alzheimer’s patients to day programs and doctors’ appointments; and provide personal care and oversee medications for their loved ones. And all that comes before attending to their own personal needs.

Studies have shown that more than half of all Alzheimer’s caregivers are women, and “we’re concerned about the health impact,” said Nancy Lee, MD, deputy assistant secretary and director of the Office of Women’s Health for the U.S. Department of Health and Human Services. Also, because U.S. families are becoming smaller and more transient, with individual members living farther apart from one another, the trends are not good regarding who will be able or willing to serve as family caregivers in the future. “This is a big problem facing us in this country,” Lee said.