Conference Brings Alzheimer’s “Out of the Shadows”

Highlights from Women Against Alzheimer's Summit

After centuries of health and economic disparity, women have emerged as a strong force in the U.S. and worldwide. Yet a crisis of inequality looms ahead.

Two-thirds of all people with Alzheimer’s are women. Two-thirds of Alzheimer’s caregivers are women.

It’s a burden that’s not well understood because most Alzheimer’s caregivers in the U.S., men and women alike, tend to a loved one’s needs at the same time as they struggle to raise families, face economic consequences, and worry about getting the disease themselves. Their role often goes uncompensated and frequently is unacknowledged, even by themselves, due to the stigma of shame and fear associated with the disease.

This veil of silence cannot continue. The impact of Alzheimer’s on struggling families and individuals has to be told. The much-feared monster has to be brought out of the shadows, into the light of hope and a cure.

That was the main message of the Women Against Alzheimer’s “Out of the Shadows” Summit held in Washington, DC, this week (September 16-17). The event was held by USAgainstAlzheimer’s and BrightFocus was a cosponsor.

Alzheimer’s is not an embarrassment, it is an emergency,” shared Jill Lesser in opening remarks. Like most of those attending the conference, she wears many hats—that of caregiver for her mother with Alzheimer’s; career-long strategic consultant; and board member for USAgainstAlzheimer’s, which led the conference.

Here are highlights of the event.

‘Care to Cure’ Ratio: A Mandate to Increase Biomedical Research

 Each year it costs hundreds of billions of dollars to treat and care for our growing Alzheimer’s population, yet only a fraction of that amount (less than 1 percent) is budgeted for federally funded research. The “care to cure ratio,” is too high, offered Sally Rosenfeld of the Cure Alzheimer’s Fund. She advocated that, as a country, we need to invest more government resources in “‘proof of concept’ science to cure the disease.”

Phyllis Ferrell, of Lilly BioMedicines, said it takes 10 to 15 years and up to a billion dollars, sometimes more, to move a drug from discovery phase to a patent. “Only one in every 10,000 new chemical entities will make it from discovery phase into a clinical trial,” she added. And given those figures, “that’s why those of us involved in drug development feel like we’re working in the ‘valley of death,’ commented Diane Shineman, PhD, of the Alzheimer’s Drug Discovery Foundation (ADDF). ADDF just launched a new prevention-oriented “cognitive vitality” initiative.

BrightFocus’ own Stacy Haller talked about the importance of private organizations “taking the risk” to fund innovative research leading to discoveries, knowledge, and new treatment pathways for Alzheimer’s disease. “We birth great ideas. We are the start of the pipeline,” Haller said.

As an example, she described the early discovery and characterization of prions by Stanley Prusiner, MD, who received BrightFocus funding support. That early work led to Prusiner’s winning a Nobel Prize, and to the discovery that prions cause mad cow disease, not necessarily Alzheimer’s. However, in the intervening decades and with subsequent discoveries, there’s been a resurgence of interest in prion-like activity as a possible explanation for the formation and spread of Alzheimer’s plaques and tangles in the brain. As a result, a new generation of BrightFocus-funded researchers are pursuing that hypothesis.

Early “seed money” in the form of a grant may be repaid many times over when a BrightFocus-funded discovery helps scientists generate larger grants from NIH and other funding sources, as often happens, Haller said. However, more federal funding is needed to nurture formative discoveries in the fight against Alzheimer’s.

With the anticipated explosion in numbers of aging Americans affected by the disease, “the economic argument is a powerful one,” says George Vradenburg, who founded USAgainstAlzheimer’s and Women Against Alzheimer’s. Alzheimer’s caregiving costs, which are higher than for other diseases, tend to dwarf direct medical costs by two to one—particularly if the declining health attributable to Alzheimer’s is not taken into account. By comparison, Vradenburg said “the costs related to cancer and heart disease are going down.”

Clinical Research to Get Real-life Answers   

Having your research progress to the level of a clinical trial is a rare distinction – and that’s how far her BrightFocus-funded research into amyloid imaging has taken Harvard researcher Reisa Sperling, MD. A 2010-14 BrightFocus grantee, Sperling is leading the A4 clinical trial, the first attempt to see whether it’s possible to prevent memory loss by identifying individuals who have the earliest changes of Alzheimer’s disease in their brain, but don’t yet have evidence of any symptoms. It will test the Lilly investigational drug, solanezumab, which is designed to clear amyloid plaque from the brain. In a previous trial, solanezumab was helpful only in a subgroup of patients with mild cognitive impairment.

Sperling believes that Alzheimer’s disease is preventable. “One of the earliest brain changes in Alzheimer’s disease is the build up of amyloid protein, and it forms plaques in the brain that occur probably 10 or 20 years before we get to the stage of very significant memory loss,” she says in a video about the trial. “I have been involved in Alzheimer’s disease for 15 years now, and I believe that the A4 study really does offer a new sense of hope.” 

A4 organizers are now recruiting individuals aged 65-85 to participate in the trial. “We have 60 sites in the U.S., Canada, and Australia, and we hope to make it as easy as possible for people who are interested to come in and get screened,” Sperling said. The public-private venture is being funded by the National Institute of Aging and several philanthropic organizations, in addition to Lilly. Because Alzheimer’s strikes African Americans and Latinos at up to twice the rate of white non-Hispanic Americans, but those minority groups are vastly underrepresented in Alzheimer’s research, organizers are making a big attempt to build in diversity. “If we don’t do it right, nobody will,” Sperling said.

Pursuing another hypothesis.  

Harvard researcher Jill Goldstein, PhD, has been studying the biological reasons why Alzheimer’s strikes women at a higher rate than men. By and large, this difference has been chalked up to the fact that women live on average five years longer than men. Goldstein thinks there’s more to it, and that depletion of gonadal hormones may pose a risk. Studies have associated an increase in estradiol levels with an increase in neural efficiency and better working memory. Only partially joking, she said she is designing an “A5 study” that will investigate a possible relationship between Alzheimer’s disease and hormone levels in women across the lifespan—and she is looking for financial support to pursue that effort.

Caring For The Caregivers  

An  estimated 87 percent of Alzheimer’s patients are cared for in the home setting by family members and friends over age 50—“and we caregivers are the keeper  of the secret,” commented former TV reporter and producer Meryl Comer, who heads the Geoffrey Beene Foundation’s Alzheimer’s Initiative. In her new book, Slow Dancing With A Stranger, she brings her own experience as a caregiver into the light of day. Two decades ago, when he held a high position at the National Institutes of Health, Comer’s husband, Harvey Gralnick, MD, was diagnosed with early Alzheimer’s—and it’s been quite a journey ever since, as her writing vividly depicts.

Caregivers have a six times greater risk than the rest of the population of themselves developing dementia, Comer warned. That’s one reason why Geoffrey Beene Foundation, USAgainstAlzheimer’s, and other organizations have teamed up with BrightFocus to create the Health-eBrain project, a longitudinal study designed to assess cognition changes in Alzheimer’s individuals and their caregivers over the long term. 

The project should promote web-based engagement and interaction for caregivers. The goal is to create a trial-ready cohort that will both “pull” demographic and baseline health information from caregivers, and also “push” information to participants, including a personalized “brain health index” and information about physical and mental exercise, nutritional supplements, and other interventions that may prove protective of cognitive function.

Corinna Lathan, PhD, co-founder and CEO of AnthroTronix, described another project to develop a “brain thermometer,” that will assess cognitive function in Alzheimer’s individuals and their caregivers. “We take vital signs in other parts of the body,” Lathan reasoned, “so why not the brain?” AnthroTronix is planning to repurpose its Defense Automated NeuroBehavioral Assessment (DANA) tool, which was originally designed for the U.S. military as a way to detect combat fatigue, depression, and other conditions that might affect soldiers’ readiness in the field. “Using this mobile medical app, we can measure brain processing speed and attention, both of which are necessary for memory and executive functioning,”Lathan said. As a tool in the Alzheimer’s setting, it can monitor brain function and tease out moods disorders, medications, and other factors besides symptoms that might have a transitory effect on cognition. AnthroTronix is planning to test the device against other self-assessment tools in both the Alzheimer’s population and their caregivers. 

“Part of the strategy is to make caregivers better clinical partners in clinical trials,” Comer  said of both upcoming studies involving DANA and the Health E-Brain website.

Another concept of benefit to caregivers is a cyclic life plan design touted by Maddy Dychtwald, a West Coast author and consultant who cofounded AgeWave. The “old” life plan went something like this, as she described it: “Man gets job. Man and woman marry. They have kids. Wife stays home. Man retires and gets a gold watch. Husband and wife go on a cruise. Man dies.”

The “new” iteration is non-serial and consists of women deciding ‘what represents the ideal plan for me in the next stage of my life?’ and interspersing periods of education, work, family, and leisure, when the motivation or opportunity is there to do so. “I don’t want to live with 18-year-old ideas at the end of my life,” Dychtwald said. And because women outlive men by an average of 5 years, are about a third more likely than men to graduate from college; and are gaining income at a rate roughly nine times that of men, so many choices present themselves.

However, the threat of disease and the stresses of caregiving could be the wreak havoc with this and reduce the gains women have made over the past century and longer. “Alzheimer’s could be the black hole of the 21st Century,” Dychtwald  said. “We must beat Alzheimer’s before it beats us.”

Overcoming Stigma and Creating Dementia-friendly Communities

In 2011, Minnesota adopted a statewide plan on Alzheimer’s. Now, three years later, it has 32 municipalities that have stepped up to identify themselves as “dementia-friendly action communities” and are pursuing defined goals that include increasing detection and improving care; supporting and sustaining caregivers; raising awareness; and reducing the stigma associated with the disease. The achievements behind these goals are substantive; for example, consensus-based protocols for diagnosing and treating the disease are being circulated to state physicians, and will become incorporated into national curricula for Medicare providers by the federal Health Resources and Service Administration. There’s a four-phase tool kit describing how other communities can organize and achieve “dementia-friendly” status.

All this is in no small part due to the leadership of Olivia Mastry, JD, PhD, executive lead for ACT on Alzheimer’s, a broad-based coalition of 60 organizations and 500-plus individuals who are behind the effort. “First you have to bring the right people together,” she said, and “when a community designates itself a ‘dementia-friendly action community,’ that’s the sweet spot for change, because the community has decided.”

The cost? “Communities don’t get much direct support from us,” Mastry said, “just about $18,000 in seed money.” Yet the costs savings projected from this model are more than $200 billion in 2014 alone, and $1.2 trillion by 2050. To learn more about the great things being done in Minnesota, and obtain the toolkit, go to www.actonalzheimers.org.