Dusk can be daunting in Alzheimer's cases

For reasons scientists can't fully explain, octogenarian Kenneth Smaltz -- and legions of people like him -- can become particularly distressed as day folds into night.

Smaltz, 81, experiences episodes of sundowning syndrome, a little-known but complex manifestation of Alzheimer's and related forms of dementia.

"When the sun goes down, agitation and anxiety go up," said Martha Wolfe, director of the Alzheimer's Center at Parker Jewish Institute in New Hyde Park. "Caregivers have always coped with it, but sundowning is something that most people have never heard of."

Affecting nearly half of the millions of people in the United States with dementia, sundowning differs dramatically from one person to the next -- responses that Wolfe said are emblematic of each person's personality: Some weep, others fidget or shriek -- some respond with frightening flashes of anger and aggression.

An episode can last minutes or hours but is so inextricably tied to the time of day some geriatricians say you can set your watch by it.

Ken Smaltz Jr., 48, owner of a rare coin business in Freeport, said he taught himself how to halt his father's late afternoon agitation through gentle words and music. "Most people think Alzheimer's is only about memory loss, but it's much, much more than that," he said. "And the medicine that's prescribed [for Alzheimer's] doesn't do anything. It's like a placebo."
 

Sense of doom

Theories abound as to why sundowning occurs.

Some scientists suggest disruptions in circadian rhythms -- the body's internal clock.

Others theorize symptoms are prompted by environmental changes, such as the lengthening shadows cast at twilight.

Many people who are sundowning, geriatricians say, feel an impending sense of doom.

"In facilities, sundowning tends to happen at the time staff changes [in late afternoon], so there is a lot of confusion in the institutional environment," said Jed Levine, executive vice president of the Alzheimer's Association in Manhattan.

Levine said many facilities teach staff members techniques to distract residents' attention in late afternoon to prevent sundowning, directing them to group activities such as arts and crafts or singing.

Others, like Wolfe -- who oversees an adult day care center -- make sure certain attendees are in a well-lit space, preventing the sense of doom that can rise at dusk.

"Sundowning is extremely predictable in some people," said Dr. Gisele Wolf-Klein, geriatric education director at North Shore University Health System. "Some families tell me they can set their watch by it. They know exactly when grandma or grandpa will be sundowning."

Randy Nelson, director of neuroscience at Ohio State University, said he's puzzled that sundowning hasn't captured broader concern. Alzheimer's affects an estimated 5 million people in the United States.

"It is a widespread phenomenon that the public doesn't know much about," said Nelson, one of only a few researchers who focus on sundowning.

Nelson's studies point to a key population of cells in the brain -- cholinergic neurons -- that are among the first destroyed in dementia. Their loss, he said, jumbles the body's master timepiece, the circadian clock.

He published a study in June, based on investigations involving mice, that defined sundowning as purely biological -- discrediting notions the condition may be caused by pent-up frustration in people incapable of expressing themselves.
 

A calming song

Ken Smaltz Jr. had been his father's primary caregiver for eight years, but last winter the burden became more than he could bear.

The elder Smaltz could no longer dress himself or brush his teeth without help.

Aware of his father's occasional bouts of sundowning, Smaltz said he quickly learned how to defuse them.

"I would say Lisa's coming," Smaltz said, referring to his sister, Lisa Kelly, 53, of Valley Stream. "Or I would get him to sing."

The two men would often sing together at the kitchen island in the son's Freeport home.

Melodies from the 1940s and '50s would have an almost magical, calming effect.

Since June, the senior Smaltz has lived at Harbor House, an Oyster Bay facility where arts and crafts, puzzles and music keep residents occupied.

Ken Smaltz Jr. and his sister have decorated their father's semiprivate room with mementos from his past: a picture of him as a Marine; their parents' wedding photo; his battered, black firefighter's helmet.

He was one of the few African-Americans to reach the rank of fire marshal during a New York City Fire Department career spanning more than 20 years.

The center offers a range of activities -- music, games and arts and crafts, intended to keep residents occupied and happy. The activities have a therapeutic effect, too, preventing sundowning and wandering.

Smaltz and Kelly say they're striving for a level of care that matches what their father provided for their mother, Barbara, who died in 1988 of Creutzfeldt-Jakob disease, another degenerative brain disorder.

"Every day, he would read to her," Smaltz said. "He would read the Bible to her. He would sing to her. He had always been a big Nat King Cole fan, and he would sing 'There Will Never Be Another You.' "

In July, Smaltz called on friends and neighbors to help him raise money for other Long Island families on the same journey -- caring for someone with Alzheimer's disease.

During the event in his backyard, Smaltz raised almost $9,000 to seed the Kenneth A. Smaltz Sr. Fund.

The money was given to Wolfe's center.

"He's not going to get better," Smaltz said of his dad. "I am doing everything I possibly can to provide him with the best quality of life."