Sundowner's Syndrome: Sundowning and Daylight Saving Time

Daylight Saving Time — every year I hear more and louder voices insisting we do away with springing ahead, when we are forced to lose that precious hour of sleep. I don’t hear quite so many voices in the fall, when we “gain” an hour, except for many of my friends in the senior caregiving community.

Sundown Syndrome occurs in approximately 25 percent of persons with Alzheimer’s disease or other types of dementia, according to the Alzheimer’s Association. When someone is “sundowning”, they can become hostile and agitated, angry and confused. Experts speculate that Sundowner’s can be triggered by end-of-day exhaustion, when all the stimulus from the day overwhelms the senses. In institutional settings, like nursing homes, Sundown Syndrome can occur during evening shift change, when there is a lot of commotion.  Although the causes of sundowning are largely unknown, it seems to happen to many late in the day, when afternoon turns to dusk. In the evening, shadows can be confusing, and people can become upset when they can’t see in the dark.

Spring Daylight Saving Time means there’s an extra hour of light at the end of our day. I wonder if this is helpful to caregivers working with those who experience Sundowner's. Even though I couldn’t find any data to suggest that Sundowners experience fewer symptoms when we “spring ahead,” I found plenty of anecdotal evidence that those with Sundown Syndrome experience it more acutely during the fall time change, when it gets dark much earlier. 

In any case, Daylight Saving Time messes with the natural rhythm of sleep, which can also trigger or exacerbate Sundowner’s symptoms and the stress they cause in elderly and caregivers alike.

The idea of Daylight Saving Time has roots in ancient civilizations, where the sun’s schedule set daily routines. Benjamin Franklin in 1784, proposed the notion jokingly to the editor of The Journal of Paris in “An Economical Project for Diminishing the Cost of Light,” pointing out that Parisians could save money on candles by extending the hours of natural daylight. The U.S. implemented DST on and off since 1918, when President Woodrow Wilson signed it into law. But it wasn’t until Congress established the Uniform Time Act of 1966 that America reached a DST standard. Today, over 70 countries have adopted DST, including the United States (except for Hawaii and most of Arizona.)

According to the Alzheimer’s Association, there are some coping strategies you can employ if you care for someone with Sundowner’s:

  • Keep the home well lit in the evening.
  • Keep the sleep environment comfortable and safe. The temperature should be comfortable and nightlights provided for safety when a person gets up in the middle of the night.
  • Maintain a consistent schedule of waking, bedtime and meals.
  • Avoid big dinners, nicotine, alcohol, and restrict sweets and caffeine so as not to interfere with restful sleep.   
  • Plan more active days and discourage afternoon naps..
  • As a caregiver, if you are feeling stressed late in the day, the person may pick up on it. Make sure you get respite help.
  • Share your experience with others.

For those of you who care for Sundown seniors, do you find that extra hour of sunlight helpful? Have you found  any sundowning therapies particularly useful? Share your caregiving strategies for coping with Sundown Syndrome in Caregiverlist’s Caregiver Stories or in the Comments section below.

Assisted Living Costs Ranked Nationally

Did you know that the term “assisted living” is the most popular Google search term for senior housing? Certainly more so than “nursing homes” and “senior living”, according to a new senior care analysis.

It’s no wonder. Studies show that in 2013, 45% of those who needed long term care and could not age in place chose an Assisted Living Facility (ALF), compared with 20% in 1996. ALFs provide a safe and secure social environment for an aging population.

But what is the cost? A recent Genworth 2014 Cost of Care Survey showed that, while the national median average for one Bedroom–single occupancy apartment in an assisted living community is $42,000 per year, that cost can can be much higher (or lower). What drives the difference in cost? Location, location, location.

The ten most expensive states for assisted living are:

$82,674 — Washington, D.C.           
$66,000 — Alaska
$66,000 — Delaware
$65,160 — New Jersey
$63,468 — Connecticut
$59,400 — Maine
$58,740 — Rhode Island
$57,000 — Hawaii
$52,470 — New Hampshire
$51,000 — Washington

The average cost increase over 2013 is 1.45% and the survey estimates a 5-year cost increase of 4.29%, based on the compound annual growth rate for surveys conducted from 2009 to 2014.

Assisted living is for seniors who cannot live independently. ALFs don’t provide the level of medical services found in nursing homes, but, generally speaking, most assisted living facilities may provide:

  • Assistance with activities of daily living
  • Central dining programs that include two or three meals a day
  • Lectures and educational activities
  • Emergency call systems
  • Exercise activities
  • Wellness programs
  • Health services, medication administration
  • Housekeeping and maintenance
  • Laundry services
  • Organized recreational activities and “field trips”
  • Social services and religious activities
  • Transportation arrangements
  • 24-hour security

Keep in mind that costs vary within state regions, so be sure to look closely at the costs of assisted living in your specific area.

Is assisted living in your future? Tell us what you look for in a facility and if the higher cost is worth the location.

Bracing for the Elder Boom in America

The image of a typical nursing home, right or wrong, inspires fear in the hearts of many seniors. They picture dark, dank living spaces, rife with an uncaring, or worse, malicious staff, and, perhaps most of all, they fear becoming isolated and forgotten. It’s no wonder, then, that the idea of aging in place, at home, is a popular option for elders in America. And as the baby boom gives way to the elder boom, we realize that whatever viable options are put in place for seniors today will become our aging options in the not-too-distant future.

In her book, The Age of Dignity: Preparing for the Elder Boom in a Changing America, 2014 MacArthur Fellow Ai-jen Poo discusses the need to provide an environment whereby the increasingly aging population can stay in their own homes if they choose. But finding a competent careforce will be the primary challenge. Tackling that imminent problem is Ms. Poo’s primary focus.

Living longer is a good thing, as long as there are systems in place to care for the aged. By 2035 there will be 11.5 million Americans over the age of 85, more than double today's five million. Right now, those who need long-term care, nearly 79%, live at home or in community settings, not in institutions, and 90% would prefer to age at home. Currently, the lion’s share of home care is provided free of charge by informal or family caregivers.

This dynamic is unsustainable according to demographics and to a changing society, as Ms. Poo points out in the book. Whereas the women in the family were traditionally expected to provide care for aging parents, dual-income American family households means there is no one at home full-time to absorb those duties. Households with fewer children and more elderly begins to look a little like something from Roald Dahl’s imagination.

The answer, clearly, is a vital, supported profession senior care workforce. Ms. Poo fights for the rights of domestic workers across the nation. Fair wages along with comprehensive senior care training would go a long way to help stem the high caregiver turnover rate and provide consistency for seniors, their families, and for the workers themselves. But paying for in-home care is already a challenge for most seniors and their families. Ms. Poo proposes that this nation needs to face and tackle these challenges now, so that all seniors and their families have access to the care they deserve.

Ms. Poo recently worked with the Department of Labor to include senior caregivers in federal minimum wage and overtime protections (which has since been delayed.). She is a vital part of Caring Across Generations who believe that this country has “an unprecedented opportunity to bring care back home—where we feel most safe and secure, and surrounded by love – and to create much needed jobs in the process.”

The Age of Dignity provides a positive roadmap to becoming a more caring nation while addressing our fraying safety net and the limited opportunities for women and immigrants in the workforce.



Seniors and Snow Removal

Winter Storm Linus dragged its blanket of snow across the North and Northeast portions of the United States earlier this week. Many spent long hours digging out and when, as we here in Chicago experienced, city snowplows couldn’t get to side streets, many of us were trapped in the middle of the road, tires spinning. It’s then that we had to rely on the kindness of strangers to help shovel us out of a mess.

Even for the hale and hearty, navigating treacherous sidewalks, getting from point A to point B, prove to be quite a challenge. Major municipalities like Boston, Chicago have city ordinances that make it a finable offense to neglect clearing snow and ice from property sidewalks.

Most city ordinances require snow removal within a certain period of time (usually within 3-4 hours of snowfall ending) and for a minimum path size in order to accommodate pedestrians, people in wheelchairs, strollers, students walking to and from school, individuals with assistive devices and, ironically, seniors.

These senior homeowners are the same who are compelled to clear their own sidewalk or face considerable fines. The snow that Linus dropped was wet and heavy and fell intermittently all day. Shoveling is hard work and can take a quick toll on the body at any age, but especially if that body is older.

According to a study that appeared in the January 2011 issue of the American Journal of Emergency Medicine, cardiac-related injuries accounted for only 7 percent of the total number of cases, but they were the most serious. More than half of the hospitalizations and 100 percent of the 1,647 fatalities occurred while shoveling snow  Patients 55 years of age and older were 4.25 times more likely than younger patients to experience heart attack symptoms while shoveling snow, and men were twice as likely as women to exhibit cardiac-related symptoms. With that in mind, Consumers Advocate has an extensive list of reviews for medical alert devices. When used properly, they can alert the proper authorities whenever it detects a medical emergency.

The City of Chicago provides a volunteer snow-shoveling service called the Snow Corps, which seniors and those with disabilities can contact by calling 311, filling out an online Service Request, or by contacting their Ward office.

Some programs like the Snow Sergeant program in Lansing, MI pair screened and pre-approved High School students needing community volunteer hours with local seniors who need snow removal services.

The Chore Corps Program in Madison, WI is operated by Independent Living, Inc., a local not-for-profit multi-service organization. Following snow storms, volunteers shovel sidewalks and driveways for seniors, allowing the seniors to safely enter and exit their homes.
The volunteers also provide a meals-on-wheels service for independent living seniors.

Caregivers are urged to discourage seniors from clearing their own sidewalks when it would be dangerous for them to do so. Instead, keep them safely inside, warm and well-fed, and contact local authorities for needed support in order to prevent incurring any fines. Living independently is preferred by most seniors, but there’s nothing wrong with getting a little assistance.

CDC Reports Record High Flu Hospitalizations of Elderly

It’s a well-known fact that people 65 years and older are at greater risk of serious complications from the flu than their younger counterparts. According to the Center for Disease Control and Prevention, it's estimated that between 50 and 60 percent of seasonal flu-related hospitalizations in the United States occur in seniors.

The CDC release the new flu numbers on Friday showing a record high amount of flu hospitalizations among the senior population. In fact, the numbers are the highest since the agency started tracking the numbers nine years ago.

About 198 out of every 100,000 people 65 and older have been hospitalized with flu-related illness this season. The next highest rate was for the 0-4 year old group with about 38 out of 100,000. Compare that to last year’s numbers, when, at the same time in the year, only about 40 out of every 100,000 elderly were hospitalized with flu-related illness.

Click on image for larger, interactive view

Because immune defenses weaken as we age, the flu can be a real danger; seniors comprise an estimated 90 percent of all seasonal flu-related deaths. On average, about 24,000 Americans die each flu season, according to the CDC. While flu vaccinations don’t guarantee a flu-free season, (the CDC reported that the flu vaccine is only 23 percent effective this winter,) Fluzone, a higher-dose flu shot developed specifically for older adults, is designed to give people a better immune response, thereby providing better protection against flu.

Those who are considered at high risk of developing serious flu complications are those with:

  • Asthma
  • Blood disorders (such as sickle cell disease)
  • Chronic lung disease
  • Endocrine disorders (such as diabetes)
  • Heart disease (such as congenital heart disease, congestive heart failure and coronary artery disease)
  • Kidney disorders
  • Liver disorders
  • Morbid obesity (body mass index [BMI] of 40 or higher)
  • Weakened immune system due to disease or medication (such as people with HIV or AIDS, cancer, or those on chronic steroids)

If you see your senior client or care recipient developing any flu symptoms, act fast and get them medical attention. Antiviral drugs can be used to manage and treat flu in the elderly before serious complications develop. Look out for fever, cough, sore throat, runny or stuffy nose, headache, body aches, chills, fatigue, and sometimes vomiting and diarrhea.

Caregivers should take extra precautions as well. The CDC especially recommends that anyone working with older adults get vaccinated to help prevent the spread of influenza, especially if they work in a long-term care facility.

Caregiverlist hopes that seniors and their caregivers stay safe and healthy all year, but especially during this dangerous flu season.

California Enacts Minimum Caregiver Training

Cases of elder abuse and elder neglect can be found everywhere. Abuse can be physical, psychological, and/or emotional. Seniors can be the victims of neglect when caregivers fail to fulfill their duties and obligations to provide even the most basic elder care. Seniors can be the victims of financial exploitation, especially when they entrust their caregiver with their funds and assets. If a caregiver is going to mistreat someone in their care, they’d be hard-pressed to find an easier victim than a vulnerable senior.

Senior care experts agree that there is a correlation between caregiver training and elder abuse. Regrettably, there is no federal mandate for caregiver training. It is up to each state to set its own guidelines for nursing assistant, home health aide, and personal care aide training and supervision. Most senior care agencies have minimum training requirements for their employees, but are not required by law to do so.

California has taken steps to rectify that situation with its Home Care Services Consumer Protection Act. Per Assembly Bill 1217, on and after January 1, 2015, home care agencies would be duty-bound to establish and continuously update a home care aide registry and would require criminal background check clearances for home care aides.

Caregiver training would include a minimum of five hours of entry-level training prior to working with a client. This includes:
(1) Two hours of orientation training outlining the role of a caregiver.
(2) Three hours of safety training, including basic safety precautions, emergency procedures, and infection control.
(3) An additional five hours of annual training. The annual training will include, but not be limited to:

  • Clients’ rights and safety.
  • How to assist a client’s activities of daily living.
  • How to prevent, detect, and report abuse and neglect.
  • How to assist a client with personal hygiene.
  • How to safely transport a client.

The training may be completed through an online training program, as long as that training can be verified.

While this is a great step and in keeping with the many states that require minimum caregiver training, it doesn’t necessarily cover the 400,000 caregivers in California’s $7.3 billion In-Home Supportive Services Program (IHSS) for low-income elderly and disabled residents. Those caregivers are hired, managed and trained by the care recipients themselves. Training requirements for the nation’s largest publicly-funded home care program have been met with resistance because clients want autonomy over their care and how it’s delivered. As a result, only about 12 percent of those caregivers have even basic caregiver training.

Finding official state reports of elder abuse and neglect is a daunting task. The most recent data I could find is from the 2004 Survey of State Adult Protective Services published in 2007. Titled Abuse of Vulnerable Adults 18 Years of Age and Older, a Report of the National Center on Elder Abuse (NCEA), it was prepared by the National Committee for the Prevention of Elder Abuse and the National Adult Protective Services Association. Unfortunately, many states differ in their definitions of what constitutes abuse. For the survey, because states collect very different types of information on the abuse of vulnerable adults, it’s hard to compare apples-to-apples. Thirty two states could provide abuse reports for vulnerable adults aged 18-59 as well as aged 60+; the balance of states don’t collect data by age group, so there’s no telling how many of their reports detailed elder abuse specifically.

The demand for direct-care workers like Personal Care Aides and Home Health Aides will soon outpace the supply. According to the Bureau of Labor Statistics at the U.S. Department of Labor, the projected growth in home health care services from 2012 to 2022 is 67 percent. As the pool of informal caregivers shrinks (family and friends), the demand will need to be filled by a more professional workforce. And in order to to help minimize instances of elder abuse, we believe that workforce should be adequately trained.

Caregiverlist applauds California for taking training initiatives, but is it enough? Should minimum caregiver training be federally mandated? What are the possible downfalls to requiring any senior caregiver to obtain even the most basic caregiver training?

Feel-Good Senior Care and Caregiver News

It’s an occupational hazard. Because I write about anything and everything connected with seniors and eldercare, I come across a lot of depressing stuff. From elder abuse to inequitable caregiver pay, the internet is not lacking in bad news.

In a bit of a departure, certainly for me, here are some stories from around the web about seniors and senior caregivers destined to make you feel good.

  • Two nurses thwart “grandparent scams,” as reported in a story by Steve Coulter of the Connecticut Ridgefield Press. One nurse prevented a senior from wiring $5000 for “bail money” and another stopped a couple from sending $2,800 to a scammer claiming to be their grandson needing money for surgery. Both instances involved bogus claims from grandchildren in trouble and both warned the seniors not to tell anyone about the financial need. Luckily, these two nurses were both highly observant and able to convince the seniors to contact other family members for verification. Of course, they found out their grandchildren were never in trouble.
  • Scotland’s oldest woman, Jessie Gallan, celebrated her 109th birthday and divulged her secrets of longevity to the Daily Mail. “My secret to a long life has been staying away from men. They're just more trouble than they're worth. “I also made sure that I got plenty of exercise, eat a nice warm bowl of porridge every morning.”
  • Men are in the house as well. Yoganonymous posted these life instructions as told by William Snell, 95:

  • In my FB feed: Random Acts of Flowers Chicago delivered 63 bouquets to Waterford Nursing Home and Rehab. RAF recycles and reuses every part of donated flower arrangements including ribbons, wire, foam, buckets, baskets, vases, moss, and stands (and flowers) as part of their “upcycled” floral arrangements.
  • Kitty Nicholson, 100, knits a baby cap a day for the last five years. Every baby born at Waccamaw Community Hospital and Georgetown Memorial Hospital leaves with one of her creations. “It keeps me out of trouble.”

So there’s good out there along with the not-so-good. Caregiverlist invites you to share your feel-good senior or caregiver story in the comments.

Home Care Workers are "Companions" Judge Rules

For the million+ home care workers in the United States, the dream of finally receiving the respect and pay equality their profession so richly deserves was struck down with one judge’s decision to block a Department of Labor regulation that would force third-party employers to provide them minimum wage and overtime, just days before it was to be enacted.

Judge Richard J. Leon, U.S. District Court for the District of Columbia sided with the Home Care Association of America, the International Franchise Association, and the National Association for Home Care and Hospice who oppose the exemption from the Fair Labor Standards Act's minimum wage and overtime requirements.

The new rule, scheduled to go into effect in early January, would have guaranteed a national baseline minimum wage and overtime under the Fair Labor Standards Act (FLSA) for all direct care workers.

Congress originally excluded home care workers from the FSLA when, in 1974, they defined all in-home care services as “companionship” services. However, today’s in-home care worker is generally more professional and better trained. They provide much more than mere companionship, many times providing vital services such as help with the activities of daily living that are so important in helping seniors to live independently in their own homes.

Quality home care agencies should (and many do) pay their workers more than minimum wage and overtime for the invaluable services they provide. However, the national median wage for home health aides is less than $10 per hour and that’s why, many argue, federal mandates need to be in place. Opponents of the regulation believe if 3rd-party agencies are forced into paying more to their hourly wage workers, the cost will be passed along to the consumer — seniors and their families who are already struggling with the high cost of senior care.

Judge Leon, who was appointed to the United States District Court in February 2002, came into prominence in December of 2013 when he ruled the NSA’s collection of all Americans’ phone calls most likely violated the Constitution (specifically, the Fourth Amendment). The judge also had historically and infamously sided with the tobacco industry against the FDA.

The home healthcare industry is facing a looming shortage of qualified home health aides and senior home caregivers. Those caregivers are the ones who make it possible for the elderly to age at home in dignity and not in nursing homes, thereby saving Medicare millions of dollars. Senior care experts agree that the only way to draw a trained workforce and stem the high-turnover rate is to provide a decent living wage. For those senior caregivers who do so much more than provide “just companionship” (although that, in and of itself, is a great service), we don’t think it’s too much to ask that they are protected and guaranteed to make at least as much as the teenager who flips burgers at McDonald’s.

Medicare Pays Doctors for Integrated Senior Care

Eleanor is 85 years old and spends many of her days in various doctors’ offices. Her osteopath checks her progress after a recent hip replacement. Her rheumatologist helps manage her arthritis pain. She sees her cardiologist after a mild heart episode and her primary care physician treats her hypertension. No one has yet addressed her depression. With each visit, Eleanor receives prescriptions, instructions, and tests — so many that she feels overwhelmed and underinformed. 

Many seniors seeking medical care have multiple chronic conditions. In fact, it’s estimated that three in four older Americans live with MCC. That figure is only going to increase as baby boomers age. This challenges has been recognized by the U.S. Department of Health and Human Services. They are initiating federal programs to prevent and manage MCC.

As one of those programs, Medicare is now paying primary care doctors to coordinate care for their elderly patients. Typically, when seniors see so many different doctors, their care is quite fragmented. MRIs and x-rays can be duplicated (and costly) and results aren’t shared between the various specialists. Dangerous drug interactions can adversely affect patient, leading to more doctor visits and deteriorating health.

Primary care physicians are ideally situated to oversee their patients overall health. Services include non-face-to-face planning and management for patients with two or more chronic conditions. To collect the new fee, doctors would have to create a care plan for their MCC patients and spend time each month working with their various specialty physicians.

"We're hoping to spur change, getting physicians to be much more willing to spend time working on the needs of these patients without necessitating the patient to come into the office," Sean Cavanaugh, deputy administrator at the Centers for Medicare and Medicaid Services told The Associated Press.

Critics of the plan say the proposed $40 per qualified patient per month is not enough to entice doctors to take on the extra work involved. They suggest it opens the door for even more Medicare fraud. But many doctors, especially those in smaller communities, have for years coordinated care for their senior patients with no compensation. "Quite honestly, I just didn't get paid for it," said Dr. Robert Wergin, president of the American Academy of Family Physicians told the AP. Dr. Wergin spends about 2 hours a day calling on his older patients who can’t make it into his office.

Many times, caregivers also play the part of care coordinator, especially if they accompany their senior to many of their doctor visits. However, it is no doubt helpful if a professional oversees medication prescriptions, possible test duplications, and the coordination of specialists. It’s the hope of Medicare to not only increase the quality of life for patients by strengthening primary care but also, let’s face it, save money on hospital stays, emergency room visits, and post-acute care.

Do you as a caregiver coordinate any of the care for your senior? If so, how involved are you? Do doctors welcome your care coordination? Have you utilized the Caregiverlist Care Consierge to create your own Senior Care Plan?  We’d love to hear from you in the comments.

Foods that Could Lower (or Raise) Your Risk of Dementia

I’m at that age where misplaced keys or a forgotten word gives me pause. I write so much about Alzheimer’s, dementia, and other memory loss diseases, I know the havoc they wreak, not only on the patient, but on their entire family. That’s why I take a proactive approach in decreasing my odds of developing dementia or Alzheimer’s.

Keeping activeboth mentally and physicallycan go a long way in keeping those diseases at bay. Research now shows there are certain foods that can also help or hurt brain health.

The Good
AARP suggests the following foods may lower your risk of dementia. Remember, whole foods are better than supplements for nutritive value, but supplements are better than nothing, so I’ve listed the foods and their corresponding vitamins/minerals. Time to stock up your fridge and pantry with these goodies:

  • Beans and green peas (vitamin B-1 and folic acid)
  • Citrus fruits and berries (vitamin C)
  • Almonds (vitamin E)
  • Fatty cold-water fish like salmon, cod, mackerel, and herring (omega-3 oil)
  • Spinach (flavonoids, vitamins A and K, folic acid and iron)
  • Coffee and chocolate (caffeine)

The Bad
From the Alzheimer’s Association, here are some foods that contain toxins. The resulting inflammation can lead to a build-up of plaques in the brain resulting in impaired cognitive function. They should be avoided as we age.

  • Processed cheeses such as American cheese, mozzarella sticks, Cheez Whiz and spray cheese (causes protein and plaque build-up)
  • Processed meats like bacon, smoked meats, hot dogs (nitrosamines)
  • White foods like white bread, white rice, pasta, white sugar (causes insulin spikes)
  • Microwave popcorn (diacetyl)
  • Beer (nitrates)

If you are a caregiver to someone with Alzheimer’s or dementia, have you seen a change in the disease severity when you’ve altered their diet? We’d love to hear your stories in the comments section.

Also, be sure to watch the Golden Globe Awards, for which Julianne Moore is nominated as Best Actress in a Drama for her star turn in “Still Alice”, the story of a woman, a brilliant professor, wife, and mother, who is diagnosed with early-onset Alzheimer’s disease.

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