Understanding Sundowning — Why Late-Day Confusion Spikes and What Helps

Are you caring for a loved one with dementia? You don't have to figure this out all on your own. Welcome to Truth, Lies Alzheimer's, the show that helps you reimagine a new relationship with your loved one, a relationship a little more free of stress and anxiety. Join host Lisa Skinner and her 30+ years of experience as she guides you on a new path to a better relationship with those you care for. Here's Lisa.

Welcome back, everybody, to another brand new episode of the Truth, Lies Alzheimer's Show. I'm Lisa Skinner, your host. Today I'm talking about sundowning. Some of you are familiar with that term and know exactly where I'm going with this. And some of you may not be aware of what the term sundowning means when it pertains to people living with Alzheimer's disease and related dementia. So I'm going to explain it to you. The term sundowning actually refers to a state of confusion occurring in the late afternoon and spanning into the night. Sundowning can cause a variety of behaviors such as confusion, anxiety, aggression, or completely ignoring instructions or directions. Now, based on various data, the overall rates of sundowning among people living with Alzheimer's disease and other types of dementia ranges from 2.4% to 66%. That's a huge range. And this is according to Gallagher Thompson and Associates. They reported that the prevalence of sundowning is as high as 66% among people living at home. So what I'm gonna do is I'm gonna illustrate what sundowning actually looks like by sharing with you a story from my book, Truth, Lies, and Alzheimer's. It's Secret Faces that depicts a person. This is a real true life story of somebody who sundowns every day and what it exactly looks like for him. His name's Jack. Now the other thing that I want to say is sundowning got its name because it most commonly shows up when the sun is going down, but I do want to make sure you're aware that sundowning can occur any time of the day or night. So every night at approximately 5 PM Jack telephoned his son Steve to say, "You have to take me to find the house." When he called, Jack always sounded a bit panicky, but Steve had no clue which house his dad was referring to. When he asked his dad which house he needed to go to, all Jack would say was, "You know." My house. This new behavior alarmed and concerned Jack's daughter Alice, but Steve just dismissed it as his dad being a little bit confused from time to time. But other than that, he thought he was perfectly okay. Well, Alice, his sister, begged to differ. She had been researching the symptoms of Alzheimer's disease and explained to her brother that the agitation and confusion, confusion that their dad was exhibiting every single night at the same time was consistent with what she read on what is called sundowning. She had also researched local elder care facilities and told her brother that living in one could possibly improve their dad's quality of life. Well, Steve absolutely would not listen. His dad, who had been born during the Great Depression, had been placed in an orphanage at the age of 8. For men of Jack's era, institutionalization was synonymous with abandonment. In fact, Jack had once told his son, "I would rather die than have you put me in one of those homes." That's how strongly opposed he was to going into one. Well, Steve remained adamant. "I know how to take care of my own father," he insisted to Alice. But the sundowning behaviors continued to worsen. Steve even started to receive calls from the manager of a local Hooters restaurant, believe it or not, who complained that his dad was frequently coming into the restaurant and asking out the young servers. He told Steve, that he was behaving like a young Romeo and that he must insist that he keep his dad from coming there. After the fourth call from the Hooters manager, Alice brought up the subject of looking into moving their dad to a facility where he could be properly cared for. Well, Steve remained stubbornly opposed to that idea. He said to Alice, Dad doesn't need to go into a nursing home. I will just keep setting him straight. But Alice went ahead and found an opening at a local memory care facility. However, Steve believed his dad belonged in a less restrictive assisted living environment because he saw him as being much higher functioning than the residents appeared to be in the memory care unit. So if he was even going to entertain the idea, he would insist on assisted living versus memory care. And he said very emphatically to Alice, "I cannot put my dad in there with all those crazies. He'll die," said Steve. And Alice just rolled her eyes He's just not getting this. The elder care facility's administrator insisted that moving him into memory care was definitely the right placement for their dad. Well, it wasn't until Jack went missing for 2 whole days and the police officers found him sleeping in his car in the Hooters parking lot that Steve finally conceded to moving his dad there on a trial basis. When they visited him 2 weeks later, Steve and Alice were pleasantly surprised to hear how well their dad had adjusted to life in the memory care neighborhood. In fact, during their visit, Steve and Alice found that Jack was so engaged in the facility's arts crafts activity that he barely even acknowledged their presence. Through conversations with the staff, they also learned that the house that Jack was trying to find so desperately was actually the home he lived in with his mother before going to the orphanage. Jack no longer talked about needing to find this home. He now bragged about his new position at the facility. He told his kids that he now had a sweeping job where he swept the back patio, and he proudly did that every night at 5 PM. Further thoughts on this story: sundowning refers to a set of behaviors in which the person with dementia is disoriented and confused, typically occurring at the end of the day. But again, the behaviors can actually occur at any time of the day or night. The person suffering from sundowning can experience dramatic changes in personality and behaviors, including pacing, wandering, suspiciousness, disorientation, confusion, and/or agitation. The person may become demanding or combative and yell out and scream for no apparent reason. The causes and triggers of sundowning are not clearly understood. Another common behavior illustrated in the Sundowning story is what we call elopement. Elopement is different from wandering in that the person has a specific destination in mind and is determined to find it or to get there. They typically seek to exit their current environment and have a purpose or agenda to get to that place. It is very common for a person with dementia to want to find a deceased spouse who they believe is worried about them. A person exhibiting sundowning behaviors can be relentless in their pursuit of what they are looking for. They may even believe that they're being kept against their will and become angry, anxious, and even aggressive. The most important thing to recognize about sundowning is that the behaviors and symptoms are a part of the disease and not the intentional behavior of the person. The behaviors displayed when a person is sundowning can usually be effectively managed with a assistance from a trained professional. In a person with a healthy brain, all thinking powers like memory and reasoning work together to define a world the person understands, allowing that person to function effectively in their world. But in people with dementia, those powers of thought shrink, creating a world that becomes increasingly overwhelming and they're less able to make sense of it. The person loses his or her knowledge of how to handle situations properly and reacts based on how a particular situation affects them emotionally. There's no reason or logic anymore. Agitation, anxiety, Fear, aggression, and anger are all examples of some of the common behaviors that will surface as a result. Alzheimer's aggression can flare up without warning, and there may not be an obvious cause. However, some of these triggers that are common include— and there's a huge list of them, but these are some of the common ones— discomfort from lack of sleep, side effects from medication, or pain that they cannot verbalize to their loved ones or their caregivers. The environment around them, including loud noises, too much activity, and even clutter. Confusion from being asked too many questions at once, trying to understand complex instructions, or feeling the stress of their caregiver. Being touched or feeling like their personal space was invaded, as with bathing or changing clothes. Picking up on your anger, nervousness, or frustration. Being criticized or told they were wrong. Feeling rushed. Not being allowed to do something or to go somewhere that they want to get to, having to do something that they don't want to do, like take a shower, feeling threatened, confused about what's going on, and believing something is happening that really isn't. It's in their mind. They're perceiving it some way. Like you are stealing things from them. So that is the information that I wanted to share with you today. Hopefully you will find this helpful and useful and implemented into your caregiving journey with your loved one or your family member. And all of these things, um, are intended to relieve some of the stress and the anxiety in the day-to-day caregiving experience, or even the way you communicate with your loved one, and turn your experiences, both for both you and your loved one, into positive outcomes. So that's it for today's new episode of The Truth, Lies Alzheimer's Show. I'm Lisa Skinner, your host, and I look forward to having you back next week for another new episode. And in the meantime, please try to stay happy and healthy, and I'll see you back here next week. Bye-bye.

Thank you for listening to Truth, Lies Alzheimer's. We hope you found something in today's episode that helps. We understand that We know that caring for a loved one with dementia can be the challenge of a lifetime, but you don't have to do it alone. If you're ready for exclusive access to even more great content and resources, head on over to Facebook and join Lisa Skinner's Minding Dementia support group. We're a community of like-minded caregivers, and we're here to help.