Growing up, Emily German looked at her mother as a role model that made her family, friends and a successful career effortlessly.
In the years & # 39; 80 & & # 90;, Linda Larsen German had made a career in the corporate ladder in Manhattan, helping to grow Liz Claiborne's business in a Fortune 500 company before leaving to start her own initiatives. He was a leader born in nature with a quick mind.
"She was such a strong, powerful and strong woman, who is 100% like I saw her all my life," said Emily, 24, a software representative who lives in New Orleans. "It was really thanks to my mother's brilliant personality that we became aware of her illness so quickly."
In 2012, Emily and other family members noticed a change in Linda's behavior. At the age of 61, he began to show unusual signs of confusion, restlessness and restlessness. Once Emily flew home to New York for a college winter break. He says he remembers his mother spends an hour looking for her car parked at the airport. At the time they laughed, but these "fun" instances became more frequent.
About a year later, he saw that his mother was frustrated and confused at the supermarket, banging the cashier abruptly – something she would not normally do. The surprise of seeing his erratic behavior was enough to bring Emily and her father into a doctor's appointment for Linda.
At the beginning of 2014, at the age of 62, Linda was diagnosed with early-onset Alzheimer's disease.
Shortly thereafter, Emily began to notice a strange cyclical pattern in her mother's behavior. As the day turns into night, Linda becomes more disoriented, irritable and upset. "It's more likely to happen again, have mood swings and feel frustrated," Emily said. "If he's in a new place in the late afternoon, he'll feel really confused and would like to go home."
Linda is one of the millions of people around the world who experience a clinical phenomenon called sundowning, typical of people suffering from dementia or cognitive impairment. Also known as sunset syndrome, decay refers to the emergence or worsening of neuropsychiatric symptoms such as agitation, aggression, and disorientation in the late afternoon or early evening. As if some sort of spell had been cast, their behavior can go from a normal night to a very unpredictable one.
"It can be a nice contrast from day to night, we have to take care of it a lot in nursing homes and it's not unusual for patients who have had a good day to suddenly believe it's time to go home," said David Trinkle, associate professor of psychiatry and behavioral medicine at Virginia Tech, which has treated Alzheimer's patients for almost 30 years. "At that moment you will see patients trying to leave the facility, and they will become extremely aggressive with screaming behaviors: I have often had patients call 911."
Studies of prevalence rates show great variability depending on the setting and population, but a decrease of 10-25% of those with moderate to severe dementia in nursing homes and up to 66% of people with Alzheimer's was observed. who live at home. It is also said to manifest itself in some cognitively intact elderly individuals and could be considered a sign of imminent dementia.
The cause of the sunset remains a mystery. Some doctors believe that it has to do with reduced visibility that comes with darkness and shadows, or in some cases with the change of shift of hospital staff that happens in the late afternoon. More recent research suggests that it could be related to an interrupt of the internal master clock of the brain, which urges the emergence of disturbances in behavior at sunset.
"We do not know much about what mechanisms might be involved in the sunset, and it is very little understood," said William "Trey" Todd, a neurology researcher at Harvard Medical School. "But the fact that the symptoms seem to follow a pattern, with a worsening in the late afternoon or early evening, suggests that something is happening with the circadian system."
In fact, one of the first symptoms observed in Alzheimer's and other neurodegenerative diseases is a disruption of the normal circadian rhythms of the body. These biological changes follow a cycle of approximately 24 hours, influencing key body functions such as the sleep-wake cycle, hormone release, digestion and body temperature. Maintaining all of these functions in sync is a master clock known as the suprachiasmatic nucleus, a collection of 20,000 nerve cells in the brain. This tiny wing-shaped structure has the great responsibility of coordinating all biological clocks in the body.
So, how does SCN find the right time? The SCN captures information on ambient light levels from the eye so that it can synchronize itself – and from the rest of the body – with the natural light / dark cycle. For example, in response to the darkness, the SCN tells the brain to release more melatonin, a hormone that prepares the body for sleep and helps drowsiness.
Recent studies have found that disturbances in the circadian system may occur years before the emergence of more classic symptoms such as memory loss and may even lead to the onset of the disease. Individuals with Alzheimer's tend to have an increasingly fragmented sleep. The release of melatonin does not occur at night as it should, and the natural rhythm of body temperature is disturbed. Other studies have identified excessive daytime sleepiness and sleep behavior disorders as independent predictors of Alzheimer's, Parkinson's and cognitive disorders associated with dementia.
In a study published this year, Todd and his colleagues found that the circadian clock also regulates an emotion frequently observed in the sunset: aggression. In male mice, aggression followed a daily cycle guided by the SCN, measured by the frequency with which they attacked the intruding mice. After destroying the neural path from the SCN to the part of the brain associated with aggression, the mice have lost this natural rhythm. Instead, they would attack more frequently during periods when control mice would begin their resting phase.
"This may mean that the body's internal clock regulates emotional patterns, and if you interrupt the circadian path that would keep it in the right timing, you can have very profound changes in behavior at certain times of the day," said Todd. "We therefore thought that there might be implications for our sunset results."
Some previous studies on humans suggest that damage to the circadian system can affect the severity of sunset syndrome. For example, a 2001 study of 25 patients admitted with Alzheimer's disease found that patients who regularly had a decongestant had profoundly altered the circadian rhythms of activity and temperature – much more than those who had not observed sunset. But if individuals with dementia have damage to the SCN or its pathways causing sunset, they are not yet known.
No cure exists for sunset (or for Alzheimer's and other types of dementia, for that matter). But experts say there are ways in which providers and health professionals can help sufferers feel more comfortable when darkness falls.
David Scales, an assistant professor at Weill Cornell Medicine who wrote about his experience with patients at sunset, said the best medicine is prevention: keep them awake and active during the day and then make sure they can sleep well, if possible . Creating a favorable environment for sleep is important.
"Try to give them (sleep aids) that are more natural like melatonin, since sleep medications like Ambien that younger people could use can actually exacerbate delirium in the elderly," said Scales. "There were times when I literally gave patients a Tums, a glass of milk and I hid them in a really nice way to help them get into the goodnight routine."
Sticking to a routine is the key to many Alzheimer's patients.
When I'm not home, Emily and her father have a caregiver who arrives at the same time every day to bring Linda, now 67, to the park with her dog and the nearby beach to watch the waves. His best time is half day, from 11.00am to 2.00pm, so when he will be active outside the home and he will also see the visitors.
"It is more effective to act on the environment than to administer pills or psychoactive drugs that can further increase their confusion and other side effects," said Marco Canevelli, a neurologist at La Sapienza University in Rome. "For example, some studies support the efficacy of intense light exposure during the day for the reduction of sundowning in patients."
For Emily, finding ways to alleviate her mother's sunset syndrome has been a long process of trial and error. Last fall, he returned home in the late afternoon after making some errands and found himself strangely stuck in spite of his mother being home. It turned out that Linda had already fallen asleep in bed with all the doors locked, thinking it was night.
Now Emily knows that the first obscurity of autumn due to the summer time confuses her and must be taken into account. He also sought advice for the sunset and other issues from organizations such as the Alzheimer's Foundation of America, which operates a toll-free daily number with licensed social assistants available to answer any assistance question.
Despite having gone through previous phases of frustration and grief, Emily said that now she feels incredibly grateful to still have a mother – one who enjoys dancing and celebrating, nurtures her artistic spirit with drawing and coloring, and remains a joy and inspiration for all of his.
"After his diagnosis, I wasted a year of my life crying that I could never ask my mother for advice and that I would never have my mother's Thanksgiving dinner again, and would never meet my children – so many things I do not need to worry about, "he said. "My real concern should be, what difference can I make in your life now?"