As any caregiver knows or quickly learns, dementia is a tough disease. It wreaks havoc on the emotions of our loved ones and those who provide care. At times, a person with dementia may experience an unsettled sense of lostness.
They might be aware that all is not right but not know how to fix it. These feelings can cause frustration, agitation, or even panic—usually later in the afternoon or early evening. Such emotions of unease are referred to as sundowning.
Sundowning is a syndrome that describes the state of confusion a person with dementia may feel, along with anxiety, agitation, pacing, and disorientation.
Several caregivers I’ve spoken with mentioned a particular symptom of sundowning that usually takes place in the early evening. They all said that their loved one would seem fine one minute, but then suddenly decided they needed to go home.
Not everyone experiences sundowning, but my Mama was one of those who did. It usually took place shortly after dinnertime. We would be settling down for the evening when my calm and quiet Mama would all of a sudden become agitated and mad—often at me.
She didn’t recognize her surroundings and wanted to go home. When that happened, she would head straight for the door and get annoyed when anyone tried to stop her. We learned to keep the door locked with a slide lock installed near the top of the door. It was easy for us to unlock, but Mama didn’t remember it was there.
Intervention by reasoning did not work
Wayne and I are beekeepers. A frequently repeated quote by Libby Mack, one of the leading beekeepers in North Carolina says, “Plan ahead and act on time.” Since sundowning became a common occurrence, we worked on strategies to help quickly defuse the situation. Once the agitation began, reason and logic were not effective. But offering Mama a cookie was. So, we tried to have cookies and snacks ready for those occasions.
Sometimes, it also helped to begin singing one of Mama’s favorite songs. Distraction seemed to break the spell. All we needed was enough of a distraction to get a pause, and then the snack or the song would become the focus, which allowed the familiarities of her surroundings to emerge once again.
Sundowning behaviors have various reasons
In the past, psychoactive medications often seemed to be the go-to solution for sundowning behaviors in folks with dementia. However, sometimes there are reasons for behaviors that can be addressed without resorting to such medications. Occasionally, my Mama would develop a UTI.
When that occurred, she would become (understandably) upset, and since she was unable to explain what the problem was, she would become angry or agitated. Blood sugar highs and lows would also affect her behavior. Since she couldn’t communicate if she was hungry or thirsty, we would offer her a drink or some food to see if that was the issue.
The DICE Approach
There is often the sense that we are on our own when caring for our loved ones and don’t always know where to turn for help. Take heart! Help has arrived in the form of a free, first-of-its-kind website created by experts in the field. It is called The DICE approach (Describe, Investigate, Create, Evaluate).
According to the site, it is a “one-stop location for evidence-informed training for assessing and managing the behavioral symptoms of dementia.” All that is to say, it offers training on how to help manage the more aggressive symptoms of sundowning without resorting to medication.
According to one of the developers of DICE, Helen Kales, chair of the Department of Psychiatry and Behavioral Sciences at UC Davis Health in Sacramento, California, the goal of the website is to “give people tools to better manage often-distressing situations.”
A paper published by the British Medical Journal agrees that non-drug approaches should be the first choice for treating sundowning behaviors in dementia patients. They assert that “there is no ‘one size fits all solution,’ and approaches tailored to the patient and the caregiver are needed.”
Humor is the best medicine
It’s one thing to find solutions to sundowning issues when needed. But wouldn’t it be grand to find ways to reduce the episodes in the first place? Even though it’s not a laughing matter, PubMed reports on a study conducted in Australia by The ‘Sydney Multisite Intervention of LaughterBosses and ElderClowns’ (SMILE). The study was a single-blind cluster randomized controlled trial of humor therapy involving 35 Sydney nursing homes. The researchers found a 20% reduction in agitation during the 12-week program.
We also found that humor helped Mama; she loved to laugh. We accidentally discovered that our formerly kind and demure mother found slapstick so hilarious that it often caused her to laugh out loud. She particularly loved the Three Stooges and Shirley Temple.
We loved watching Mama laugh so much that we often rewound the DVD to the funny places to watch her reaction. Due to the dementia, she didn’t even realize that she had just watched it moments before. That practice usually helped improve her mood.
No matter what strategy you decide to use, remember the saying by my friend, Libby Mack: “Plan ahead and act on time!”
Has your world been touched by dementia?
My book, “Finishing Well: Finding the Joy in Dementia“, is a collection of stories and tips about doing life with my Mama. May it encourage and inspire you to find joy on your own, unique journey.