This post was contributed by Michelle Seitzer, a freelance writer who has specialized in elder care content for eight years and prior to writing, worked in the field for more than a decade.
Every day when the sun went down, Mrs. Smith* had a panic attack. Growing up as the oldest child in a family whose parents both worked, getting her younger siblings off the bus and safely home was her responsibility. And every day, when the sun went down outside the windows of a suburban Philadelphia memory care community, she went back to that time in her mind. She grew agitated, worried, and anxious because she was not where she needed to be. She would nearly hyperventilate—her ragged breaths short and shallow—and tears would fill her fearful eyes as she thought of her brothers and sisters coming home to an empty house.
She was sundowning.
Eventually, the nurse would give her a small dose of a mild anti-anxiety medication to help her relax and breathe more easily.
What Is Sundowning?
Mrs. Smith wasn't the only resident in that dementia care unit who suffered from sundowning, but her daily episodes represented a classic case of the phenomenon that affects many persons with Alzheimer's and dementia.
"For some people with Alzheimer's disease, late afternoon or early evening can be a difficult time of day. They might experience increased confusion or anxiety, and/or restlessness that could include pacing, wandering or yelling," says Linda Abbitt, a family caregiver and writer who specializes in eldercare and healthy aging. Abbitt was also a co-facilitator of an Alzheimer's Association family caregivers support group and the Director of Resident and Family Services for Irvine Cottages, a residential care facility where she observed and helped with residents who were sundowning.
Stress and Sundowning
Chris Ebell, a dementia care consultant and lead trainer with Dementia Care Specialists, says some communities would keep their lights on all day to avoid the dramatic shift of day to night. But Ebell believes there's more to the story when it comes to sundowning and other difficult dementia behaviors like wandering, aggression, paranoia, or depression.
People with dementia are actually experiencing stress throughout the day (i.e. overstimulation, boredom, pain, hunger, and other unmet needs), says Ebell, and these stressors compound, building up to—and often erupting—at dusk.
To that end, the Progressively Lowered Stress Threshold (PLST) model guides Ebell and her Dementia Care Specialists colleagues when equipping caregivers to better support persons with dementia. They look at the many internal and external stress inducers (fatigue, feelings of insecurity, noise overload, environmental distractions, or an impatient caregiver) which are likely "at the root of behavioral disturbances like hitting, resisting care, yelling, anxiousness, pacing, and sundowning."
Another challenge? Persons with dementia are often unable to regulate their emotions, and to articulate their needs.
"I can have a stressful day, but at the end of it, I can settle myself down. I can go home, sit on the porch with my dogs, and drink a glass of lemonade," Ebell says. But those who rely on the care and support of others have no voice. There is no privacy, no control over their schedule, and no autonomy, she adds.
Solutions for Sundowning
Whether the individual lives at home or in a residential setting, Ebell touts engagement (throughout the day) as the number one solution for navigating difficult dementia behaviors. And all caregivers, both family members and professionals, are responsible for that engagement, she adds.
"What's important to them? What activities are meaningful to them? Engagement must be person-centered and relationship-based," Ebell advises. Find out what brings them joy, comfort, and peace, she says.
If a person with memory loss becomes agitated, listen calmly to their worries or fears, Linda Abbitt suggests. "Try to reassure them that everything is OK, and then distract them from whatever seems to be upsetting them with something they enjoy—a favorite snack, or a calming activity (such as looking at a family photo album), playing soothing music, or reading a book," says Abbitt.
Sometimes a change in environment can help, Abbitt adds. "If you can't go outside due to weather, turn on the lights indoors, and close any curtains or blinds at dusk to help minimize shadows, which can also cause confusion," she says.
Remember at all times, and especially when you're most frustrated or angry with your loved one, they deserve your respect and honor. Their behaviors aren't done deliberately to upset you. You can't control memory loss, but you are in control of how you react to it. Heighten your degree of forgiveness, generosity and graciousness during your interactions with them.
How to Cope as a Caregiver
As an only child caring for both parents with different needs simultaneously (and raising her then young son), Abbitt found education and comfort early on through participation in an Alzheimer's Association support group. "My husband also was a huge help," she adds. "He was always there to listen as I'd often come home from visiting my parents in their assisted living facility saying, 'This is too much for one person to handle!'"
When you're meeting your loved one's needs while dealing with the more challenging aspects of dementia caregiving, you must be aware of your own needs too. Burnout can make its appearance boldly or subtly, especially when you're under stress for a sustained period of time. Find what self-care methods are best for you—be it talking to an understanding friend or family member, going for a walk, recording your feelings in a journal, taking a bath, or engaging in a new/favorite hobby—and make time for them, even if for just a few moments each day.
*Names have been changed to protect privacy.