Managing Sundowning and Dementia

For most of us, sunset is an occasion we celebrate. It's a time of transition from the often frenetic energy of the day to the more subdued and relaxing nature of evening. But for many elderly people who suffer from Alzheimer's disease or other forms of dementia, it can be a time of increased memory loss, confusion, agitation and even anger.

For family members who care for those with dementia, witnessing an increase in their loved one's symptoms of disorientation at sunset can be nothing short of troubling, if not also painful, frightening and exhausting.

Common Sundowning Triggers

  • Too Much End-of-day Activity: Some researchers believe the flurry of activity toward the end of the day as the facility's staff changes shifts may lead to anxiety and confusion.

  • Fatigue: End-of-day exhaustion or suddenly the lack of activity after the dinner hour may also be a contributor.

  • Low Light: As the sun goes down, the quality of available light may diminish and shadows may increase, making already challenged vision even more challenging.

  • Internal Imbalances: Some researchers even think that hormone imbalances or possible disruptions in the internal biological clock that regulates cognition between waking and sleeping hours may also be a principle cause.

  • Winter: In some cases, the onset of winter's shorter days exacerbates sundowning, which indicates the syndrome may have something to do with Seasonal Affective Disorder, a common depression caused by less exposure to natural sunlight. 

Managing Sundowning Symptoms

The treatment of Sundowner's Syndrome, just like its cause, is not well established. But there is hope in a number of approaches that have helped calm down sufferers of the condition in the past.

"It's not like treating blood pressure where you just give a blood pressure medicine," says Rabins. "It's hard to generalize about it because there's not one treatment approach, but I think often when you focus on the individual you can find things that are more likely to work with one person than another."

Some of the more successful approaches to managing sundowning behavior include:

Establishing a Routine
Routines help sundowners feel safe. Routines minimize surprises and set up daily rhythms that can be relied on. Without a routine that fits your loved one's need for regular activity and food, he or she may remain in a constant state of anxiety and confusion, their limited cognitive abilities unable to deal with the unpredictability of the day. Schedule more vigorous activities in the morning hours. Don't schedule more than two major activities a day. As much as possible, discourage napping, especially if your loved one has problems sleeping.

Monitoring Diet
Watch for patterns in behavior linked to certain foods. Avoid giving foods or drinks containing caffeine or large amounts of sugar, especially late in the day.

Controlling Noise
It may be helpful to reduce the noise from televisions, radios and other household entertainment devices beginning in the late afternoon and early evening. Avoid having visitors come in the evening hours. Activities that generate noise should be done as far away from your loved one's bedroom as possible. 

Letting Light In
Light boxes that contain full-spectrum lights (light therapy) have been found to minimize the effects of sundowning and depression. As the evening approaches, keep rooms well-lit so that your loved one can see while moving around and so that the surroundings do not seem to shift because of shadows and loss of color. Night lights often help reduce stress if he or she needs to get up in the night for any reason. 

In some cases of sundowning, especially when associated with depression or sleep disorders, medication may be helpful. Consult a physician carefully, for some medications may actually disrupt sleep patterns and energy levels in a way that makes sundowning worse, not better.

Taking Supplements
A few over-the-counter supplements may be of some benefit. (Remember to consult with your loved one's doctor before giving him or her any dietary supplement.) The herbs ginkgo biloba and St. John's Wort have assisted people with Alzheimer's and dementia in the past. Vitamin E has also been found to minimize sundowning in some cases. Melatonin is a hormone in supplement form that helps regulate sleep.

Looking for Behavior Patterns

Sundowners Syndrome is a condition most often associated with early-stage Alzheimer's, but has been known to affect the elderly recovering from surgery in hospitals or in unfamiliar environments. Occasionally, the syndrome will affect people in the early morning hours. While the symptoms and causes of Sundowners Syndrome are unique to the individual, researchers agree that it occurs during the transition between daylight and darkness, either early in the morning or late in the afternoon. But the precise cause of sundowners, like the cause of Alzheimer's disease, remains elusive.

"There is not a clear definition of what sundowners syndrome means," says Dr. Peter V. Rabins, professor of psychiatry in the geriatric psychiatry and neuropsychiatry division of Johns Hopkins University School of Medicine. "It's a phrase. Some people would only include agitation in the definition. It is a range of behaviors-something that is not usual for the person. That can range from just being restless to striking out."

While some with Alzheimer's express their dementia throughout the day, the behaviors encountered in sundowners syndrome are often more severe and pronounced, and almost always worsen as the sun goes down and natural daylight fades. While one person may express several of the behaviors at the same time, another may exhibit only one of them. Symptoms include rapid mood changes, anger, crying, agitation, pacing, fear, depression, stubbornness, restlessness and rocking, according to Rabin.

Occasionally you will find your loved one "shadowing" you closely from room to room. They may ask you questions and interrupt you before you can answer them. They may ask these questions more than once, but it is important to realize they have no recollection of ever asking them before. They are not purposely trying to aggravate you. They simply do not remember.

The more severe symptoms of Sundowners Syndrome are also the most difficult to manage for those who care for Alzheimer's patients and may also put others at risk: hallucinations, hiding things, paranoia, violence and wandering. Wandering, especially, is dangerous, besides also being frustrating. Not only can the person not control these behaviors or conditions, if they wander, they often do not know they are wandering and they often do not know how to return home. While it may sound rather indiscreet, it is often a good idea to give your loved one an identification bracelet and even go so far as to lock doors and fence yards with locked gates to keep him or her safe during unsupervised hours. It is never a good idea to leave a loved one with sundowners alone in a car or in a public place while you are shopping or running errands.

According to Rabins, it is not inevitable that a person with Alzheimer's disease will also develop Sundowners Syndrome. And it is also important to note that Alzheimer's specifically and dementia in general are not the only precursors to the condition. As mentioned above, it is not uncommon for perfectly healthy elderly people to behave strangely when recovering from surgeries in which anesthesia has been administered, or during protracted hospital stays. These event-oriented psychoses are usually temporary. It is only when a pattern in behaviors at sundown is noticed that a syndrome may be developing.

"When there's a pattern to it," says Rabins, "it's important to look for triggers or something in the environment. Is there something in the patient's medication? Are their fewer activities? Is there less staffing? There might be things in the environment that may change or things in the patient: biological changes, sleep-wake cycle, hormone secretion problems. There may be things that can be done, for example, to increase the stimulation for some people, but for others it might be decreasing it. Does it happen every day, how long does it last, how severe is it?"

Because it is common, many professional caregivers who care for Alzheimer's patients are experienced with its range of symptoms and trained to deal with them appropriately.

It is important to remember that Sundowners Syndrome in your loved one is not something he or she can help. They are not purposely becoming agitated or angry or afraid as the afternoon leads to evening. Remaining calm will help you and your loved one get through these sometimes stressful moments.


Alzheimer's Disease - What Was Learned in 2015

The first mention of Alzheimer’s disease was by German doctor Aloysius Alzheimer in 1906. A patient, whom Alzheimer referred to as “Auguste,” was presenting with a “peculiar disease.” He knew little about it, recording symptoms such as loss of memory, unfounded suspicions, and loss of cognitive skills.

More than a century later, an estimated 5.1 million Americans are living with Alzheimer’s, which we now know is a degenerative neurological disease. While scientists have made strides in finding out what happens to the brains of people with the disease, why it happens remains a mystery.

In the absence of a known cause or cure, the disease is pervasive, killing more people than breast cancer and prostate cancer combined. Due to the around the clock care that late-stage patients require, it’s also one of the most expensive—costing the U.S. $226 billion in 2015 alone.

The sixth-leading cause of death, Alzheimer’s disease is the only one in the top 10 that cannot be slowed, stopped, or prevented. With this knowledge, scientists are performing many studies to locate the underlying cause and find a possible cure.

Dozens of studies were published on the disease this year, both on potential risk factors and ways to decrease risk. As is true with studies in any field, some are weaker than others, but together they present a compelling sign of progress.

Here are six of the most compelling studies.

Ageism May Increase Risk

In December, a study from researchers at the Baltimore Longitudinal Study of Aging (BLSA) found evidence that negative views about aging could increase your risk of Alzheimer’s. The study centered on the volume of the hippocampus in two groups of men and women—one with negative views of age, the other with positive views.

In the group with negative views of age, the researchers found a “rate of decline in hippocampal volume three times the rate of decline in the positive-age-stereotype group.” Brain shrinkage—specifically in the hippocampal region—is one of the main characteristics of Alzheimer’s.

Another identifier of Alzheimer’s is a buildup of abnormal proteins (“plaques”), which the ageist group presented a higher number of as well.

But the study was not without flaws. With only 52 participants, it doesn’t necessarily prove a causal relationship. 

Olive Oil Could Help Reduce Risk

Due to the around-the-clock care that late-stage patients require, it’s also one of the most expensive—costing the U.S. $226 billion in 2015 alone.

This year science presented further evidence to bolster a long-held theory that a diet heavy in olive oil may help protect the brain from Alzheimer’s disease. Performed by Rush University, the study specifically zeroed in on the effect of a diet called the Mediterranean-DASH Intervention for Neurodegenerative Delay or MIND.

Researchers studied over 900 middle-aged Americans over the course of five years who were on the MIND diet, which consists of foods like fish, grains, vegetables, and healthy fats. Among the participants who followed the MIND diet “rigorously,” the researchers found the reduced risk of Alzheimer’s to be 53 percent. Those who followed it “moderately well” presented a reduced risk of 35 percent.

Disturbed Sleep Could Increase Risk

During a study performed on mice at the University of California Berkeley’s Sleep and Neuroimaging Lab, researchers found signs that sleep disturbances my increase the risk of Alzheimer’s disease. Sleep, they found, allows the brain to rid itself of a “stringy toxic protein”—one that builds up in the brains of those with Alzheimer’s.

The lead researcher equated this process to the work of a dishwasher, cleaning out the “garbage protein.” In the mice with disturbed sleep, the brain had less time to get rid of the toxin, causing a buildup of trash.

Scientists say this buildup can impair mental functions like learning and forming new memories—leading them to conclude that chronic disturbed sleep may be an “environmental risk factor for Alzheimer’s.”

Coffee May Decrease Risk

Good news for caffeine-loving Americans: Researchers found evidence this year that coffee can help reduce the risk of Alzheimer’s. The study was a part of a larger analysis of mortality by the Harvard School of Public Health.

Analyzing more than 90,000 women and 40,000 men, the researchers found consumption of coffee to have a “significant inverse association” with deaths due to neurological diseases such as Alzheimer’s.

Coffee’s ability to potentially lower risk of death from Alzheimer’s wasn’t the only discovery—researchers found those who drank it regularly to be less likely to die from a handful of other conditions, ranging from suicide to heart disease. The scientists theorized that “bioactive compounds” in coffee may be responsible, but stressed the need for additional research to make a conclusion.

Stress Could Increase Risk

A study this December provided yet another reason to find a way to de-stress this holiday season: an increased level of it may be a risk factor for Alzheimer’s. Published in the Alzheimer Disease and Associated Disorders journal, the study followed 500 adults over the course of three years to measure their stress levels.

Stress level was determined through a series of test performed each year. In the group of individuals who “perceived” themselves to be under the highest level of stress, researchers found an increased risk of early cognitive decline. One potential cause, they suggested, is an increase of cortisol in stressed individuals, which weakens nerve cells in the brain.

Alcohol May Reduce Risk

The most recent study—and likely the most popular—comes from the University of Copenhagen where researchers linked moderate alcohol consumption with a lower risk of death in people with Alzheimer’s. Among the 320 Alzheimer’s patients that were studied, the group that consumed two to three drinks a day were found to have a 77 percent lowered risk of dying.

Scientists were unable to determine why exactly alcoholic beverages—ranging from whiskey to beer—may influence this. They said the research builds on earlier studies suggesting alcohol intake may have a “protective effect” on the brain. Since this runs in direct contradiction to other studies (which show alcohol’s negative effects on the brain), further research is needed.

The studies, while undoubtedly intriguing, should all be taken with a grain of salt. While the concept that a cup of coffee and three beers a day could significantly reduce your risk of Alzheimer’s risk is appealing, science is far from making a final conclusion. If the amount of studies performed this year is any indication, however, it won’t be long before they do.


Family Caregivers New Year's Resolutions

With the New Year upon us, now is the logical time to set goals for the 365 days ahead. It's that fleeting time of year when gyms are packed to the brim and burgers are swapped for salads as idealistic folks determined to meet their health and fitness goals dutifully work toward their New Year's resolutions.

New Year's resolutions get a bad rap, and that's understandable, considering the high rate of failure. As a caregiver for a senior loved one, you may be tempted to forgo the resolutions this year. After all, why add more to your already substantial to-do list?

But chucking your healthy resolutions isn't such a great idea. Study after study has revealed the many health risks family caregivers face - the chronic stress often caused by this role can lead to a whole host of health problems, and depression is common. If you've been on an airplane, you know to put on your own mask before doing the same for passengers who need your help. In everyday life, it's the same principle - you have to help yourself before you can help anyone else.

The following resolutions address some of the common obstacles family caregivers face. Even if you only manage one or two, it just might help you be a better caregiver, and a happier person.

1. Prioritize your own physical and mental health
Family caregivers tend to be big-hearted people willing to devote themselves to ensuring a loved one's well being, often at the expense of their own health. And the chronic, daily stress experienced by many caregivers means they're also at greater risk of many serious illnesses, from diabetes and heart disease to cancer.

It won't be easy, but at some point, you need to make a realistic plan for yourself to look after your own physical and mental health. Make it happen this year with the help of a medical professional who can determine your most pressing health needs.

Maybe your first priority is weight loss and physical fitness, lowering your cholesterol, or finding a therapist who can help you cope with stress and boost your mental health. The sooner you take care of your own health needs, the better you'll feel and more equipped you'll be to care for your loved one.

2. Get more sleep
Sleep has a huge impact on overall health, yet for too many Americans, a regular good night's sleep is nothing more than a dream. For caregivers juggling myriad responsibilities, it's even tougher to get the recommended 7-8 hours of slumber nightly.

But getting more shut-eye is key to improving your health and happiness. Try starting small, by setting your bedtime 15 minutes earlier than usual, then add another 15 minutes and so on until you're logging at least 7 hours of sleep.

3. Schedule more "me" time

Time for yourself is a rare commodity for most family caregivers. When you're not caring for your loved one, you're taking on other responsibilities. Carving out some time just for you -- at least once a week -- is essential for your health and well-being.

Respite care can give you some much-needed time off while ensuring your loved one is in good hands. There are plenty of forms of respite care available today, from asking a trusted loved one for help to adult day care or short-term assisted living stays.

4. Spend more quality time with your loved one 

If you're like many family caregivers, you're so busy taking care of your loved one's daily needs that you're not really spending quality time together. Rather than letting the hours with your loved one get consumed by monotonous care tasks, make a point of creating fond memories with that person.

Planning a fun activity once a week with your loved one that gives the time to connect is a good start. That could include looking over old photo albums together, baking, exploring a local museum together, or going on a scenic drive. Whatever the activity, make it something you can both enjoy together that takes you out of the daily care routine.

5. Plan for Your Loved One's Future Care

It's a tough pill to swallow, but there will likely come a day when you're no longer able to care for your loved one. This may happen due to your own physical limitations, or as their symptoms become too advanced for you to handle alone.

Planning ahead and researching care options for your loved one could save a lot of time and stress in the future. Depending on your situation, that could mean in-home care or assisted living. And while no one wants to contemplate it, it's wise to designate an alternate person to care for your loved one in your will.

10 Holiday Survival Tips

This week, families are gathering for Christmas, sharing laughter and happy memories. But for families coping with Alzheimer’s, the holidays can be bittersweet times, filled with stress and frustration. Festivities can agitate, confuse, and over stimulate persons with Alzheimer’s disease and other dementias. Meanwhile, caregivers can feel anxious, frustrated, and lonely – leading to stress and depression.

Here are 10 Holiday Survival Tips for families coping with Alzheimer’s.

Tip 1 - Planning can avoid holiday stress

Individuals who experience the most difficulty with the holiday season are those who have given little thought to the challenges they will encounter. Consider ahead of time what may be expected of you, both socially and emotionally.

  • Discuss holiday celebrations with relatives and close friends in advance.
  • Plan to maintain a regular routine while trying to provide a pleasant, meaningful and calm holiday event.
  • Celebrate early in the day or have a noon meal rather than a late dinner.

Tip 2 – Take care of yourself (caregiver)

Remember, the holidays are opportunities to share time with people you love. Try to make these celebrations easy on yourself and with the person with Alzheimer’s disease so that you may concentrate on enjoying your time together.

  • Set limits by telling family and friends that you intend to control stress this holiday season.
  • Maintain a positive mental attitude.
  • Ask for assistance for you and your loved one.
  • Attend an Alzheimer’s Association support group that will allow you discuss ways to overcome holiday stress.
  • Prepare to deal with post-holiday letdown. Arrange for in-home care (respite care) so you can enjoy a movie or lunch with a friend and reduce post-holiday stress.

Tip 3 – Prepare the person with Alzheimer’s for the family gathering

Preparing your loved one for the upcoming holiday events can allow both of you to enjoy the warmth of the season.

  • Talk about and show photos of family members and friends who will be visiting.
  • Have a “quiet” room in case things get too hectic.
  • Play familiar music and serve favorite traditional holiday foods.
  • Schedule naps, especially if the person usually takes naps.
  • Schedule family and friends visit times

Tip 4 – Prepare family members and friends

Preparing families and friends with an honest appraisal of the person’s condition can help avoid uncomfortable or harmful situations.

  • Familiarize family members and friends with behaviors and condition changes.
  • Recommend practical and useful gifts. (See Tip 7)
  • Remind family and friends the best way to communicate with a person with dementia. (See Tip 6)

Tip 5 – Involve everyone when selecting activities

Involve everyone in holiday activities including the person with dementia.

  • Consider taking walks, icing cookies, telling stories, doing chores, making a memory book or family tree, or keeping a journal.
  • To encourage conversation, place magazines, scrapbooks, or photo albums in reach; play music to prompt dancing or other kinds of exercise.
  • Encourage young family members to participate in simple and familiar activities with the person.

Tip 6 – Communicate with success

Alzheimer’s can diminish a person’s ability to communicate. These tips may help you understand each other.

  • Be calm and supportive if the person has trouble communicating.
  • Speak slowly with a relaxed tone.
  • Avoid criticism. For example, when someone forgets a recent conversation, avoid saying, “Don’t you remember?”
  • Address the person by name.
  • Be patient, flexible, and do not argue with the person with Alzheimer’s

Tip 7 -- Smart gift giving

  • Encourage family and friends to give useful, practical gifts for the person such as identification bracelet (available through Medic Alert + Alzheimer’s Association Safe Return). Other gifts may include comfortable easy-to-remove clothing, audiotapes of favorite music, videos, and photo albums.
  • Advise others not to give gifts such as dangerous tools or instruments, utensils, challenging board games, complicated electronic equipment, or pets.
  • If possible, involve the person in giving gifts. For example, someone who once enjoyed cooking may enjoy baking cookies, or buy the gift and allow the person to wrap it.

Tip 8 – Safe environment in the home

Persons with dementia may experience changes in judgment. This behavior may lead to confusion, frustration, or wandering. Consider these tips to reduce the risk of injury and situations that could be confusing to someone with dementia.

  • Assign a “buddy” to watch out for the person to ensure their comfort.
  • Arrange ample space for walking side-by-side, for wheelchairs, and walkers. Keep walking areas clear.
  • Consider seating options so the person with Alzheimer’s can best focus on conversation and be least distracted.
  • Don’t serve alcohol, which may lead to inappropriate behavior or interactions with medications.
  • Accommodate changes in vision. Place contrasting-color rugs in front of doors or steps. Avoid dark-colored rugs that may appear to be “holes.”
  • Limit access to places where injuries occur, such as a kitchen or stairwell. Check temperature of water and food.
  • Create even level of lighting; avoid blinking lights.
  • Keep decorations simple; avoid using candies, artificial fruits/vegetables, or other edibles as decorations.
  • Supervise in taking medicine.
  • Keep emergency phone numbers and a list of medications handy.

Tip 9 -- Travel wisely

The following suggestions may ensure a positive traveling experience:
  • Never leave the person alone.
  • Use familiar modes of transportation and avoid peak travel times.
  • Keep plans simple and maintain daily routines as much as possible.
  • Allow extra time to avoid the stress of rushing.
  • Advise service and hospitality staff that you are traveling with someone with dementia and about the person’s behaviors and special needs.
  • Arrange for services, such as wheelchairs, ahead of time.
  • Provide identification items such as a Medic Alert + Alzheimer’s Association Safe Return) bracelet and clothing labels.

Tip 10 – Reliable sources of support

Families can call the Alzheimer’s Association at 727-578-2558 or the 24-hour Helpline at 1-800-772-8672 to answer questions about warning signs and to assist persons with dementia and caregivers. The Helpline will be open all Christmas day and News Year day, as well as year round.