Because We Care
Practical tips for family caregivers

What is "sundowning"?

Does your relative with dementia stay calm during the day but shift toward agitation as evening approaches? Are you noticing that in late afternoon they become anxious, confused, restless? Perhaps they pace the house or ask the same questions again and again. This frustrating pattern is called sundowning or sundown syndrome.

Sundowning is a group of behaviors that often appears in people living with Alzheimer’s disease or other forms of dementia. As daylight fades, your loved one may become suddenly irritable or distressed. They may want to get out of the house or “go home,” even though they are home. Their behavior is not intentional or willful, though it is plenty stressful for you!

Experts do not fully understand why sundowning happens, but several factors may play a role. After a full day, your relative’s brain and body may simply be tired. Dementia can also disrupt the brain’s internal clock that controls sleep and wake cycles, making evenings more difficult.

Aspects of the environment are also believed to be involved: dusk brings shadows and rooms may look unfamiliar. Noise, busy household activity, or a rushed evening routine can precipitate symptoms. Possibly, they are expressing a need to use the toilet or are hungry or in pain. A change in surroundings, such as with travel or moving, can also trigger sundowning behaviors.

To help make evenings calmer, focus on prevention and simple routines:

• Ensure your relative spends time outdoors or in natural sunlight earlier in the day.
• Schedule appointments, bathing, and other activities for morning or early afternoon.
• Keep the home well lit in the evening to reduce shadows and confusion.
• Maintain a regular routine for meals, activities, and bedtime. Ask the doctor when medications should be given.
• Reduce stimulation in the evening, such as TV shows. Notice what settles them: a simple task, such as folding laundry? Soft music? A short walk? A foot massage?

When your loved one is upset, pause to calm yourself. Your frustration will only add to their stress. Approach them calmly and offer reassurance. Don’t disagree. Instead, gently redirect their attention by asking a question or sharing a memory. With patience and steady routines, many families find that evenings become easier to manage.

Father's Day without Dad

This Father’s Day, you may be among the millions of Americans who face the bittersweet reality of celebrating a father who is no longer alive. Holidays of this sort are especially poignant the first year after a death.

Whether your father was a protector, a fun buddy, or a stern authority, his passing has had an impact on you. The thought of Father’s Day may prompt an upwelling of grief or deepening gratitude. Or it might stir regret: there may be things you wish you had done together or had said.

This Father’s Day, consider these options for acknowledging the man you called “Dad”:

• Cook a meal in his honor. What were your dad’s favorite foods? Create a meal and invite guests to offer a toast to your father.
• Plant a tree or sponsor a bench in his name. Returning to this spot each year can be a great way to acknowledge the place he had in your life and heart.
• Get a Father’s Day card and write what you would like to have said to him. Or write it on a biodegradable helium balloon that you can release to the sky.
• Go over old photographs, especially with the next generation, and share stories and special memories.
• Visit his gravesite. Bring flowers. Perhaps read a poem or tell a story. You might record your visit to share on social media or with other loved ones.
• Take a father figure to lunch. Is there someone else in your life you look up to as a role model? Take him to lunch and rekindle that relationship.
• Honor a lonely father. Many older men are isolated. Contact a nursing home, senior center, or church to ask if you can visit and brighten the life of another dad.
• Ask yourself, “What would Dad do?” and go do it, with gladness.

Completing an advance directive

What if your mother developed dementia? Are you legally entitled to make medical decisions for her? What if your father had a major accident? Do you know his treatment preferences?

An advance directive provides answers. A directive is completed in “advance,” when a person is healthy. It enables them to guide their future medical treatment should they become unable to speak for themselves. (You need one, too! Accidents can happen anytime.)

Advance directives typically have two parts:

• The medical power of attorney names a person to make healthcare decisions. Your family member identifies a person to be their healthcare “agent” or “proxy.” The agent has the responsibility to make medical decisions based on their understanding of your loved one’s wishes. This includes approving or disapproving any treatment.
• The living will provides instructions for healthcare. Your family member chooses what life-sustaining or other treatments they want or don’t want, and under what conditions. This section also covers organ donation.

Advance directives are simple to complete. No attorney is necessary.

• Have your relative complete an advance directive for each state they spend time in.
• When they sign it, have witnesses, as specified.
• Give a copy of the completed directive to your loved one’s primary physician, the person named as healthcare power of attorney, and involved family members. Make sure it is added to your relative’s electronic health records. Put copies in their car, desk, or bedside table, too. Consider digital storage options, including in health apps on smartphones.
• Have your family member review the directive periodically, especially after a new diagnosis or significant life event. The healthcare agent may no longer be available or be the best choice. Changes in health might add a new perspective and affect your loved one’s instructions.