If you are a caregiver of a loved one with Alzheimer’s disease, you may find yourself dealing with something called, “Sundowning”. Sundowning typically occurs in the middle stages of Alzheimer's and is thought to strike about 20% of Alzheimer’s patients.
It is a set of symptoms that generally begin at dusk and last through the night. Symptoms can include pacing, wandering, increased agitation (even becoming combative), disorientation, and an overall inability to sleep. The symptoms impact your loved one and probably everyone else in the house. It is one of the most common causes of Alzheimer’s caregiver burnout, and can cause a great deal of stress for everyone. So why does it happen? And what can you do about it?
What Causes Sundowning?
No one knows the actual cause of sundowning, although it appears to be related to underlying disruptions in one’s sleep-wake cycle. Some researchers believe there are chemical changes that occur in the brain of Alzheimer’s patients that may trigger sundowning symptoms as the disease progresses.
There are things that appear to increase the risk of sundowning:
• Reduced lighting and seeing shadows at dusk (the brain misinterprets the time of day and/or the shadows may create unfamiliarity and anxiety)
• End of day exhaustion (physical or mental)
• Unfamiliar routine or people
• Changes in environment
• Physical ailments/pain (urinary tract infections, constipation, and other health conditions)
• Frustrated caregivers may demonstrate nonverbal cues of their irritation, creating an agitated reaction
• Too many medications, or a particular medication’s side-effects
• Noise and further “internal clock” disruptions (taking a nap, travel time changes)
Coping With Sundowning
Occupational therapists (OTs) who focus on individuals with Alzheimer’s, both in their homes as well as in long-term care settings, often look at improving sleep “insufficiency” (not enough sleep), both for the patient and caregiver. OTs try changes in bedtime routines as well as work on cognitive and behavioral therapy interventions. Here are a few of their suggestions:
• Rule-out medical issues. Agitation and sleep restlessness can be due to infections, medication issues or other sleep-impacting health disorders (sleep apnea, restless leg syndrome
• Identify triggers. Late-night television? Noisy children? End of day caregiver stress? An OT can evaluate the dynamics in the home to identify triggers and work to address them
• Ensure a healthy diet and prevent dehydration. No heavy meals before bedtime; avoid stimulants (caffeine, cigarettes, sugar) and avoid alcohol. Provide small healthy snacks and talk to the doctor if you suspect low blood sugar.
• Familiar routines are critical. Bedtime (and bedtime rituals), mealtime, toileting schedule, morning wake-up, and appointments
• A buffer time (a calming time prior to going to bed) is helpful. Cuddling with a calm pet or a weighted blanket or lap pad has been described as “grounding” and “feeling safe”. Many nursing homes, hospital acute psychiatric wards, OTs and therapists use weighted blanket therapy to help calm agitated patients. The blankets provide a feeling of well-being through deep pressure touch stimulation, similar to a massage. Talk to your loved one’s OT or doctor to see if it is recommended as a therapy for your loved one
• Have lighting in the home that clearly demarcates night and day. In the late afternoon, when shadows occur, draw the drapes and turn on bright lighting in the home until bedtime.
• Have a night light in your loved one’s bedroom should they become disoriented at night.
• Keep active during the day (exercise, social time), but don't over-schedule, and be sure to allow transition time. Travel, appointments, and other activities can cause anxiety in your loved one.
• Discourage naps during the day.
• Talk to your loved one’s doctor about prescription sleeping drugs that could help, but many people find that the medications cause other issues. Ask the doctor about a low dose of melatonin, which is a natural sleep regulating hormone
• Buy special locks for windows and doors if your loved one wanders. There are also door and motion sensors you can install to set off alarms, or bells can be placed on doorknobs
• Try complementary therapies that help calm. There are many therapies that can help calm your loved one. Different things work for different people (and also at different stages of the disease). A few examples to look into, with your doctor’s approval, are: Animal Assisted (pet) therapy, music therapy, art therapy (the Alzheimer’s Association has a wonderful program for this called, “Memories in the Making”), aromatherapy and massage. A weighted lap pad or wrap, or an herbal neck/shoulder pad can also be helpful.
Finally, don’t forget to care for yourself. Caregiving is rewarding, but also very challenging. Make sure you stay connected with others, both within and outside of your caregiving role. Join an Alzheimer’s Association Support Group
to find local resources. And be sure to get respite, as self-care will enable you to continue to support your loved one through the difficult journey.