Caregivers beware: Clock change a challenge for those with dementia

Close to 7.5 million older adults in the U.S. live with Alzheimer’s disease or some other form of dementia. And while most people may see the clock change overnight Nov. 2 as a chance to get an extra hour of sleep or more morning daylight, it’s potentially a problem for those with dementia and their roughly 12 million caregivers.

The issue is called “sundowning,” which refers to the increased confusion that dusk through nighttime brings for those who have dementia. Symptoms of sundowning include anxiety, agitation, trouble sleeping, wandering, hallucinations, pacing and disorientation, according to the Alzheimer’s Association. Others add crying, shadowing a caregiver, being alarmed or scared for no obvious reason and sometimes aggressive or even violent behavior.

Changing the clock can accelerate the disorientation associated with sundowning and the problem can persist through winter months.

“The onset of winter brings a shortening of daylight hours, but the abrupt end of daylight saving time accelerates that change,” said Stacie Kulp, executive director of the Alzheimer’s Association of Utah.

“The day suddenly ends much sooner. Dinner is eaten at night instead of toward the end of daylight. These changes can spark an unexpected reaction from our loved one. We may see some heightened agitation, disorientation or even hallucinations. Since about 80% of the 38,300 Utahns living with Alzheimer’s disease are cared for at home by family, it is important for family members to anticipate these changes and make appropriate adjustments. ”

In Utah, as many as 115,000 family members may face that issue as they care for the estimated 38,300 Utahns who have Alzheimer’s disease or other forms of dementia.

Kulp said that the cause of sundowning isn’t known, but there are steps families can take to prevent or deal with it and the discomfort time change can cause someone living with dementia.

“One key is to take trips or appointments earlier in the day to make the latter part of the day calmer. Taking a morning or early afternoon walk with the person is a good way to help reduce their restlessness. And keeping the house well-lit can help offset the earlier sunset,” she said.

“If these steps are not helpful, discuss the situation with your family physician. The Alzheimer’s Association also has a Helpline (800-272-3900), staffed by trained clinicians, who can provide advice at no charge around the clock.”

Tips for managing sundowning

Harvard Health notes that sundowning is more common in late stages of the disease and almost everyone who has Alzheimer’s eventually exhibits some form of sundowning behavior. The article adds that those who experience it may have “good days with few symptoms and difficult days with more severe symptoms. The personality changes associated with sundowning syndrome can be difficult and distressing for caregivers.”

Managing sundowning by a loved one is largely up to the caregiver, given the nature of dementia. It’s important to take care of yourself first and get plenty of rest, to reduce the likelihood you’ll “exhibit unintended nonverbal behavior” that could contribute to heightened stress in the person who has Alzheimer’s or other dementia forms. The association notes that those with dementia are very sensitive to the emotions of the people around them. So the group’s advice is to create a feeling of safety and security as much as possible.

Among other tips for managing the time change, the Alzheimer’s Association recommends that caregivers:

• Ask the doctor what time the person with dementia should take medication. And if modifications like those below don’t work, talk about sundowning and agitation with the doctor.
• Plan activities for earlier in the day — morning or early afternoon — whether it’s bathing, medical appointments or any kind of travel. It is very likely that is when the person with dementia is most alert.
• Daytime exercise is helpful for using an individual’s energy. So the association says to take a walk together or perhaps make space to put on some music and dance. Activities can reduce restlessness.
• Pay attention to the triggers that seem to spark sundowning. That means making notes about what preceded an episode.
• Don’t try to discourage pacing, but do keep an eye on the person living with dementia as they pace.
• Do not physically restrain the individual. Restraints may increase agitation.
• Reduce stimulation from TV, chores, loud music or other sources in the evening because it may add to a person’s confusion or agitation.
• Have a larger meal at lunch and a lighter one in the evening.
• Keep the home well-lit in the evening, which could help reduce the person’s confusion.

The Alzheimer’s Association offers free programs and services. There are also resources online at www.alz.org.