It is estimated that 1 in 5 people with Alzheimer’s gets sundown syndrome. Agitation, yelling, nervousness, confusion, mood swings, aggression and restless are just some of the behaviours that persons with dementia who experience sundowning may display. In this post we briefly cover the experts’ position on sundowning and its causes; recommendations for symptom management; and finally explore some unique initiatives organizations around the world are taking to support caregivers during the critical evening hours.
What is sundowning?
Multi-faceted, multifactorial and still formally undefined – sundowning is referred to by the Mayo Clinic as “… a state of confusion occurring in the late afternoon and spanning into the night.” It is important to remember that sundowning is in fact not a separate disease, but a cluster of symptoms which typically occur in the afternoon to the evening hours of those with a dementia diagnosis. A proper definition remains elusive because it refers to the “… collection of neuropsychiatric symptoms that can present in patients with a background of neuropsychiatric disease, most frequently dementia.”
Of particular interest, Alzheimer’s Society UK recommends thinking of sundowning as a form of communication for the person with dementia. They write that “… the person may be trying to communicate rather than behave a certain way just because it’s late afternoon. Always consider what other reasons there may be for a person’s behaviour.”
What causes sundowning?
Sundowning is often a result of an amalgamation of factors. Alzheimer’s Society UK points out to disturbances in the circadian rhythm, caused by the physical changes to the brain, loss of routine at a previously busy time of day, too little or disturbed sleep, too little or too much light, effects of medications and sight or hearing loss as some of the causes. Some other reasons as cited by A Place for Mom include too much end-of-day activity and the changing shifts of the staff leading to confusion and anxiety, fatigue caused by end-of-day exhaustion or the sudden lack of activity, as well as seasonal changes such as shorter days in winter. Mayo Clinic also names increased shadows, difficulty separating reality from dreams and the presence of an infection (eg: urinary tract infection) as some causes.
How can caregivers manage symptoms of sundowning?
Managing sundowning symptoms can be challenging because of the multitude of factors which influences it. While there is no single cure, caregivers can try some of the following solutions (courtesy of Mayo clinic) such as:
- Maintaining a predictable routine for bedtime and meals.
- Limiting caffeine and sugar to morning hours.
- Keeping a night light on to reduce agitation that occurs when surroundings are dark. Reducing background noise and stimulating activities, including TV viewing in the evening which can sometimes be upsetting.
- Placing familiar items — such as photographs — in strange or unfamiliar settings to create a more relaxed, familiar environment.
- Playing gentle music in the evening or relaxing sounds of nature, such as the sound of waves.
- Talking with your loved one’s doctor if you suspect that an underlying condition, such as a urinary tract infection or sleep apnea, might be worsening sundowning behaviour, especially if sundowning develops quickly.
Other ways to mitigate the symptoms of sundowning may include (courtesy of the National Institute of Aging):
- Going outside or at least sitting by the window — as exposure to bright light can help reset the person’s body clock
- Getting physical activity or exercise each day
- Getting daytime rest if needed, but keeping naps short and not too late in the day (i.e. no later than 4 hours before bedtime)
- Getting enough rest at night
According to the AARP, a caregiver managing sundowning requires creativity, flexibility, empathy and strong observational skills in the journey to determine the triggers and appropriate measures to manage the behaviours. So where can you get support for your loved ones with sundowning and how are some organizations around the world helping caregivers in this process?
What are supporting organizations doing?
In Singapore, St Joseph’s Home provides night-respite service for caregivers of persons with dementia who experience sundowning. Dusk to Down Dementia Respite Care recognises that caregivers need extra support. The program aims addresses sundowning symptoms while supporting the needs of people with dementia to age-in-place. For example, the respite care helps people adjust their sleep pattern through “… an array of activities, relaxation spaces and physiotherapy to enhance the quality of life and care received by persons with dementia.”
In America, the Elder Serve Program at Night at the Hebrew Home provides dementia assistance and a supportive environment from 7 pm to 7 am. As with the example in Singapore, social and recreational activities such as “music and therapeutic movement, horticulture therapy, crafts, painting, exercise classes, reading, discussion and reminiscence groups…” are made available for guests. The program accommodates English, Spanish and Russian speakers.
The Need for Enhanced Sundowning Support
Presently, up to 50 million people worldwide are living with dementia and there are nearly 10 million new cases every year. Despite the growing numbers of people diagnosed with dementia, as well as those who display symptoms of sundowning, support facilities are still difficult to find. According to David Pomeranz of the Hebrew Home, it is especially difficult to find caregivers willing to work the overnight sundowning shift due to staffing challenges; and critical that Medicaid and insurers reimburse such programs in the US.