Doctors aren't quite sure what causes sundowner's syndrome, but they do know people with Alzheimer's disease are prone to develop it, especially in the mid to late-stages of the disease. Sundowner's refers to a phenomenon that many patients with dementia experience around the time the sun is going down.
Understanding Sundowner's Syndrome
Sundowner's syndrome may have something to do with the shift between daylight and nighttime. "It's not a cognitive issue per se, but rather a change in behaviors," says Spencer Liebel, PhD, a clinical neuropsychologist and assistant professor in the Department of Neurology at University of Utah Health. "There's newer research coming out suggesting that this is tied with circadian rhythm. The body wants to sleep, but some of the brain structures regulating sleep might be damaged in the dementing process."
Neurons continue degenerating over time, which can often lead to an exacerbation of agitation, behavioral outbursts, and sometimes even physical outbursts. A whole host of potential contributing factors exist, like an imbalance of the messaging chemicals in the brain.
It's common to see sundowner's in older adult patients with dementia. "Available studies show up to 66% of dementia patients suffer from sundowner's syndrome, further complicating an already heartbreaking life experience," Liebel says.
Diagnosis and Planning
Liebel doesn't diagnose a patient with sundowner's in the neuropsychology clinic at U of U Health, but rather it presents as a feature of the issue (i.e., dementia) that's detailed by the patient's spouse, caretaker, or family. Instead, sundowner's syndrome is a feature of dementia, such as Alzheimer's, Frontotemporal Dementia, Lewy Body Dementia, or another dementia type. There's also no diagnostic test, like an MRI, to confirm if sundowner's is present.
Liebel meets with patients and caretakers to develop a plan that details what's going on from a cognitive and mental health perspective. Discussions about how these things might be changing and change in the future are important so that family members or caretakers know what to expect moving forward.
Sleep is the great equalizer. "If your sleep is right, your mood, your cognition, and your health are all improved or better," Liebel says. "With sundowner's syndrome, good sleep is super important." Sleep can be critical for someone already experiencing brain deterioration. With the addition of poor sleep, it's another setback challenge for an already vulnerable brain.
Maintaining a schedule is also important because individuals with dementia can't quite keep up with time. "Changing their schedule disrupts everything, so try to keep a nightly routine or daily routine as calm and consistent as possible," Liebel says. "Don't have TVs in the room or a radio on where they sleep. It should be dark, cool, and quiet."
Caregiver Burnout and Support
Sundowner's syndrome can be hardest on the caregiver. "Some people with sundowner's are cranky and obtuse and you don't know why," Liebel says. "It requires a lot of patience, but that's not a great answer for people living with this 24 hours a day and trying to help."
To help fight burnout and get support, Liebel recommends caregivers turn to their local chapter of the Alzheimer's Disease Association. He also strongly encourages caregivers to engage in individual and group psychotherapies in order to learn skills and strategies to better handle stress and to obtain another level of support. University of Utah Health also offers several supportive resources, including the Family Caregiving Collaborative, Huntsman Cancer Institute Caregiver Resources, and Huntsman Cancer Institute support group for caregivers.