En español | If your loved one has Alzheimer’s disease or dementia, you may be seeing changes in their behavior in the late afternoon or early evening — a phenomenon known as sundown syndrome, sundowners or sundowning.
Research indicates that as many as 20 percent of people with Alzheimer’s experience sundown syndrome, according to the Alzheimer’s Association. With this symptom of dementia (and some other conditions, as well), the approach of sundown can trigger sudden emotional, behavioral or cognitive changes. These might include:
- mood swings
- energy surges
- increased confusion
These may lead in turn to challenging behaviors like pacing, rocking, screaming, crying, disorientation, resistance, anger, aggression — or even violence. Many people experiencing sundown syndrome feel the urgent need to go somewhere or do something, but they can’t always explain why.
For some, the behavior soon abates. For others it continues for hours, flipping their sleep schedules so they are wide awake all night and sleepy during the day.
There are many theories about why this happens. It may have to do with the dimming light — a sense that it’s time to change activities or “go home” — or other factors, including extreme fatigue, hunger, thirst, pain or discomfort, or hormonal changes that occur as the sun goes down. Evening and darkness may tap into fears of being unsafe and insecure.
Whatever the cause, seeing their loved one with these symptoms can be a nightmare for family members.
My father had Alzheimer’s, and we first noticed sundown syndrome when he was in the disease’s moderate stage. Questions or observations that were occasional for most of the day — “What’s the plan?” “What should I be doing?” “We’d better get going!” — got more frequent, and more urgent, around 5 or 6 in the evening. As the disease progressed, his symptoms improved, and I think that’s thanks at least in part to a variety of techniques we used on a regular basis.
Tips for managing sundown symptoms
1. Observe and minimize triggers. Watch for fatigue and other things that seem to spur on sundowning behaviors. Afternoon transitions and activities that you consider normal can be anxiety-producing for your loved ones.
For example, does the household get chaotic and noisy as people get home from work? Does the TV get switched to something loud or intense, like a crime show or the news? Is there are a lot of cross talk during mealtimes? Is there a caregiver shift change?
Watch, too, for nutritional triggers and adjust eating and drinking schedules. Cut back on caffeine and sugar, which can be too stimulating, and limit liquids later in the day, as they can cause increased toileting needs.
2. Maintain routines and structure activity. Maximize activity earlier in the day and minimize napping (especially if your loved one isn’t sleeping well at night). Try to avoid challenging, stressful tasks around dusk and at night. Keep to a regular daily routine — there’s security in the familiar.
3. Simplify surroundings and adjust the sleep environment. Too much sensory stimulation can cause anxiety and confusion, worsened by changing light. Try to minimize physical, visual and auditory clutter in your loved one’s bedroom.
At night, keep it calm and comfortable (experts often suggest a temperature around 68 to 70 degrees), and dark (try light-blocking curtains or an eye mask, plus dim night-lights for safe navigation). Evaluate your loved one for sleep disturbances such as sleep apnea.
4. Validate and distract. Simply trying to reason with someone in the midst of sundowning probably won’t work. Instead, try to validate your loved one’s feelings (even if they don’t make sense to you) to let them know you are listening. Try to draw them away from troubling thoughts and anxieties by diverting or redirecting attention to favorite activities, foods, animals and people.
For example, maybe they are soothed by watching a favorite TV show, taking a walk, snuggling with a pet or reminiscing. My dad loved The Lawrence Welk Show; we would give him TV earphones to amplify the volume and limit other sounds. It was almost always an effective distraction.
5. Adjust light exposure. Some experts theorize that our hormones and body clocks are regulated by exposure to light, and that when light is limited it throws us off. If adequate exposure to direct sunlight isn’t possible, try a light box and use bright lights in the room.
As it gets dark outside, increase indoor lighting. In the winter, when days got shorter, I would often turn on the bright back porch lights outside our dining-room window, which helped prevent Dad from thinking it was already bedtime.
6. Play music and calming sounds. We used music throughout the day for Daddy — instrumental music as he woke up, sing-along favorites or show tunes to activate him, and calming music when sundowning set in. I recommend trying solo piano or classical guitar, or creating a “relaxation” channel on a music app such as Pandora, Spotify or Amazon Prime Music.
If Dad got anxious, my sister and I started singing his favorite songs and he would join in — a great diversion. Playing nature sounds like rain or ocean waves all night, or just white noise, helped him fall asleep and slumber longer.
7. Use essential oils. Lavender, rose, ylang-ylang, chamomile, blue tansy, frankincense and other essential oils can be calming. If you want to encourage waking up and activity during the day, try bergamot, jasmine, peppermint, rosemary or a citrus such as grapefruit, lemon or orange. Test which scents your loved one responds to.
Essential oils also can be used for aromatherapy. (We used lavender oil in a diffuser for Dad, but you can also use it to scent a cotton ball, or mix with water and spray it in the air.) They can be potent, so be sure to use appropriate amounts and dilutions.
8. Give healing touch. Never underestimate the value of a hand or foot massage to relax tense muscles and increase feel-good hormones. For example, when Dad was at the height of sundowning, we prepared a warm footbath with herbs and essential oils and soaked and massaged his feet every evening, which eased him through the transition incredibly well.
He always loved having his head rubbed and scratched, so doing that immediately calmed him. He also got a professional massage once a week, which helped on an ongoing basis. A loving hug or holding hands can be physically calming and emotionally reassuring for your loved ones, breaking the cycle of anxiety.
9. Try acupuncture. Acupuncture has been used to treat anxiety and depression for many generations and is increasingly being accepted by Western medicine. I started taking Dad to acupuncture to help with grief, depression and anxiety and was pleased at how it relaxed him; he continued acupuncture for the last five years of his life. The sessions would start with a short massage to calm him (very important), and he generally slept through the treatment. Talk with your loved one’s doctor about this option, and find an acupuncturist who understands dementia.
10. Use herbs, supplements and medications wisely. Ask the doctor about medications that might help with symptoms, such as antianxiety drugs and antidepressants. Be sure to ask about and monitor possible side effects; for some people with dementia, sedating drugs can cause the opposite effect. (A geriatric psychiatrist is an excellent resource.)
Also ask about herbs and supplements, such as lemon balm, valerian, chamomile, kava and holy basil. There are many supplements that claim to be calming and stress-reducing, including melatonin, magnesium, and B, C and E vitamins. Keep in mind that a brain with dementia may react differently to certain treatments.
Managing sundown syndrome requires creativity, flexibility, empathy and strong observational skills as we try to determine what triggers our loved ones and how to address the behaviors. No two people with dementia are exactly alike, so be prepared to test different approaches. Some may not work, but others will. Successes might be temporary or intermittent. But even a little bit of success can greatly ease your loved one’s anxieties, as well as your own stress.
Editor’s note: This column, originally published in May 2017, has been updated to reflect that Amy’s father died in 2018.