How Rutgers Is Helping to Tackle the Rising Crisis of Public Housing Residents Facing Dementia Alone

A Newark screening initiative revealed severe cognitive decline among isolated, low-income seniors-prompting Rutgers researchers to launch a new intervention program

When Payton White, a doctoral student at Rutgers University-Newark, began a memory screening program for African American seniors living in public housing in the local area, she expected to find a few cases of mild dementia.

Instead, she encountered people who thought the year was 1988. Or even 1923.

Of the 160 people screened in the first half-year of the program, roughly two-thirds had memory decline more severely than is usual for their age. Of those, nearly half showed memory loss consistent with mild, moderate or even severe dementia, according to White.

She was shocked.

"I thought, 'This can't be,'" said White, who works with her doctoral adviser, Mark Gluck, a professor of neuroscience who heads of the Aging & Brain Health Alliance at Rutgers University-Newark.

The common denominator? The seniors were isolated, without financial resources or loved ones nearby to recognize signs of decline and offer help.

"They are facing dementia alone," said Gluck, a neuroscientist who for more than a decade has researched dementia and Alzheimer's disease among African Americans who develop the illness at more than twice the rate of other groups.

Gluck said the increase in low-income adults facing dementia alone is a rising public health crisis, one that reverberates beyond Newark and affects many public-housing residents, not just African Americans.

From left, Glenda Wright, Aging & Brain Health Alliance Director of Public and Subsidized Housing Relations; Dolores Hammond, Director of Participant Satisfaction; Mark Gluck, head of the Aging & Brain Health Alliance, and Marissa Wilson, research assistant.

"This is an all-hands-on-deck, brain-health emergency in Newark," said Gluck, who has led programs in Greater Newark for the past two decades to spread awareness of Alzheimer's disease and help reduce risks among African Americans, including community-based exercise classes.

The plan by members of the Aging & Brain Health Alliance includes a collaboration among various schools and units at Rutgers as well as regional health care providers. They identify seniors coping with dementia in isolation and connect them with clinical care at geriatric and neurology practices providing dementia and memory assessment and treatment.

Gluck said his initiative - so far funded through industry and philanthropic organizations - has the potential to be duplicated nationwide.

Gluck, who said the Newark effort is scalable and transportable, is planning to work with research partners in Louisiana and Florida to show that the programs can translate to other communities.

"One of our primary goals is identifying people in the earliest stages of Alzheimer's disease before significant progression occurs - when early diagnosis, treatment and intervention can have the greatest potential impact," he said. "This is not just a care-management effort. Early screening and rapid connection to clinical care are crucial to address the growing problem of dementia in lower-income adults, especially African Americans who suffer from Alzheimer's disease and related dementias at very high rates."

While there is no cure for Alzheimer's or other forms of dementia, two medications can slow their progression when detected early.

Graduate students at the Rutgers School of Nursing, called Community Brain Health Navigators, will be working with residents. They will help seniors make appointments, arrange a car service to the clinics, bring them home and then explain next steps. Gluck also is seeking navigators among graduate students at the Rutgers School of Public Health.

But the first step is to identify elders whose dementia is progressing under the radar of neighbors and loved ones.

"If you're not with that person every day, you might not notice," said White.

As a result, far-off family members may be lulled into thinking their loved one is just fine. After all, they have friends in the building and may participate in planned activities.

"A lot of times, families see them doing the normal stuff, so, they think, 'Oh, it's not that bad,'" said Tuesday M. Whitney, the family self-sufficiency program manager at the East Orange Housing Authority, a partner of the Aging & Brain Health Alliance.

One of our primary goals is identifying people in the earliest stages of Alzheimer's disease before significant progression occurs - when early diagnosis, treatment and intervention can have the greatest potential impact.

Mark Gluck

Aging & Brain Health Alliance at Rutgers University-Newark

Although researchers at the Aging & Brain Health Alliance were surprised by the high prevalence of dementia revealed by their screenings, Glenda F. Wright wasn't. She has worked with Gluck for the past 10 years as a community brain health educator who oversees university-community relationships with residents of public and other federally subsidized housing.

"I have worked with low-income housing all my life, and I've seen a pattern," she said. "Many residents are lonely and depressed."

In many cases, grown children who have relocated urge parents to move closer to them - only to be met with resistance.

"As we age, we become so complacent and stubborn," Wright said. "We want to stay right here."

Gluck is seeking funding to expand the Brain Health Navigation effort in the Newark area and other parts of New Jersey. His brain health education and care navigation initiatives are funded by a $100,000 grant from The Hearst Foundations and an ongoing grant of $587,000 from Eli Lilly and Co.

"At present, with our current funding and staffing, we are only making a dent in solving this regional and national problem," said Gluck.

Many seniors found to be cognitively impaired are initially referred to University Hospital's Center for Memory and Brain Health, a new memory-loss and dementia clinic run by Jack Tsao, a professor of neurology at the Herbert and Jacqueline Krieger Klein Alzheimer's Research Center at Rutgers Brain Health Institute, with additional care provided by Padam Neopane and colleagues in the Rutgers New Jersey Medical School Department of Family Medicine and the Division of Geriatrics.

Because screening has turned up so many residents who need medical attention, Gluck's lab also has partnered with Hackensack Meridian Health, which operates more established memory-care clinics in nearby Clark and Edison.

In addition to offering other forms of support, students from the Rutgers School of Nursing will be trained in the best ways to communicate with someone with moderate dementia. They also will learn how to work with family members who might be unaware of the decline in their parents' cognitive health, said Angela Starkweather, dean and chief academic officer of the school.

"These are some hard conversations to have, so you want to give them the language they need to reach people in the right way," she said.

"It's a big benefit for our students and our faculty researchers," added Leorey Saligan, vice dean of research at the School of Nursing.

Accompanying public-housing residents to their doctor appointments gives students a crucial look at how their patients live outside the clinical setting.

Starkweather offered a simple explanation for why the School of Nursing agreed so readily to help get these community members into care as quickly as possible: "It's needed now."