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Wednesday, 06.20.2018 | The Virginian-Pilot
Alzheimer’s disease: A Looming Crisis
2 | WEDNESDAY, 06.20.18 | CARING FOR THE AGING | THE VIRGINIAN-PILOT |
Alzheimer’s disease: A Looming Crisis With people living longer, officials are bracing for a wave that could affect almost 14 million Americans and cost more than $1 trillion. By Ben Swenson
A
ny discussion of Alzheimer’s disease eventually gets down to some worrisome statistics and one pretty scary ratio: 1 in 3. Today some 5.7 million Americans live with the disease and one out of three people older than 65 will die with it – or a related dementia. Those numbers alone are concerning, but officials predict a ballooning population of baby boomers will grow that number to nearly 14 million in 30 years. The Alzheimer’s Association, the nation’s foremost advocacy group, describes the increase as a looming public health crisis. The nation is poorly prepared in terms of treatment or funding to handle the coming flood of new diagnoses. But there remains hope, thanks to promising research and a growing number of leaders willing to face the emergency head-on. Alzheimer’s disease is the most common form of dementia, an umbrella term that describes disorder in cognition and memory. Alzheimer’s, which is degenerative and fatal, can be neither reversed nor cured. And managing symptoms requires intensive and costly interventions. While a 2016 study by the Journal of the Am erican Medical Association reported a 24 percent decline in the rates of dementia overall between 2000 and 2012 (which the researchers think may have something to do with better overall health staving off cognitive declines), experts are eyeing the population bubble of older Americans that will ultimately lead to more cases.
Caring for the aging
“We are living longer,” said Dr. Eliezer Masliah, director of the Division of Neuroscience for the National Institute on Aging. “The increasing life expectancy and the increasing population will result in an increase in Alzheimer’s disease.” There are now 53 million
ter, said the disease creates a sort of cascading effect. More people’s suffering from Alzheimer’s leads to a greater need for assisted living facilities. Most people with Alzheimer’s eventually suffer profound cognitive deficits, such as a loss of all awareness of surroundings, and loss of basic physical functions, causing incontinence and an inability to move, for instance. This stage of the disease requires around-the-clock attention and specialized medical equipment that even the most devoted family members often can’t provide. And the cost of providing care is extremely high. In 2018, the price tag for treating Alzheimer’s and related dementias in the United States is estimated to be $277 billion. By 2050, that figure will grow to $1.1 trillion.
Americans age 65 or older – the age when Alzheimer’s symptoms generally begin to appear. The boomer generation is graying quickly, so by 2050 about 88 million Americans will be senior citizens. The older the population gets, the more people will be affected by Alzheimer’s. Seventeen percent of people between 75 and 84 have it. Above age 84, the proportion nearly doubles, to a third of all individuals. The growing number of diagnoses is worrisome enough at face value, but Gino Colombara, executive director of the Alzheimer’s Association’s Southeastern Virginia chap- Continued on page 4
| Ad Manager: John Donnellan, 757-446-2070 | Editor: Clay Barbour, 757-446-2379 | Stories by Ben Swenson | Illustration by Wes Watson
| WEDNESDAY, 06.20.18 | CARING FOR THE AGING | THE VIRGINIAN-PILOT | 3
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Continued from Page 2
“Direct care is going to bankrupt Medicare and Medicaid,” Colombara said. The average cost to treat one person with Alzheimer’s or related dementias exceeds $48,000 annually. Medicare and Medicaid typically cover more than $32,500 of that. This financial challenge has experts predicting an increase in unpaid care. As it is, caregivers already spend on average about nine hours a day tending to a loved one with Alzheimer’s, and often have little choice but to reduce the number of paid hours they work. For all the grave consequences that the increasing number of Alzheimer’s diagnoses portends, Colombara sees room for optimism. The dire forecast is based on assumptions that there will be no major breakthroughs in treatments for Alzheimer’s and related dementias. “I believe with all my heart and soul that we will see effective treatments in the near future,” he said.
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Alzheimer’s disease
Myth Forgetfulness is a sure sign of Alzheimer’s disease.
Fact Everyone forgets things:
where you left your phone; the name of an acquaintance’s spouse; directions to a vaguely familiar place. These are normal lapses that occur more often as one ages. Systemic and disruptive loss of memory or cognition – forgetting significant dates or having trouble with fundamental problem solving, for instance – is typically a sign of something more serious.
Researchers have made important gains just in the past few years, according to Masliah. “There has been tremendous progress made at the molecular and cellular level, where we understand genetic underpinnings of disease,” he said. Researchers have been working to develop a test that
could detect the presence of Alzheimer’s years before the onset of the disease by identifying specific biomarkers. Masliah said a blood test to look for these indicators is a near-term possibility. While it may be five years or more before such a test is available for clinical applications, researchers will be studying
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its potential much sooner. Ideally, he said, researchers at some point will develop a preventive treatment, in the same manner that someone with high cholesterol takes specific drugs as part of a broad treatment regimen. Masliah likens the current state of the research to that of HIV in the initial wave of that disease. “Years ago, when we first had an epidemic of HIV identified, a tremendous amount of funds were made available,” he said. “You see where we are now – HIV is a treatable condition. Not curable, but treatable.” Policymakers have voiced support for the effort to find effective treatments for Alzheimer’s disease. In 2011, Congress passed the National Alzheimer’s Project Act, which directed officials at the U.S. Department of Health and Human Services to create a plan, and implement supporting actions, to address Alzheimer’s. Public funding for research into Alzheimer’s and related dementias increased in fiscal year 2018 to $1.9 billion, more than double what policymakers allocated just a few years ago. There nevertheless re mains a lot of ground to cover as researchers fight for a cure. Among the most pressing challenges is the need for people to participate in clinical trials. But the very people needed for these studies don’t yet know they have Alzheimer’s. “We need to recruit people that are asymptomatic but have the disease,” said Masliah, and for that, researchers need to be able to screen candidates. The fight against Alzheimer’s will be aided tremendously by individual commitments to participate in something as simple as a study, he said. Colombara echoes the notion that a turnaround in the track of Alzheimer’s will come with a united, national effort composed of the actions of individuals. “The American people are the hope for the future, and their voice is important,” he said. “When we have requests for federal research funding, people need to be part of that voice. Advocacy is important for changing the trajectory of this disease.” ■
By the numbers Except where noted otherwise, data is from 2018 and comes from the Alzheimer’s Association.
1906 – The year Alois Alzheimer first publicly
described the disease that would bear his name.
5.7 million – The number of Americans who suffer from Alzheimer’s.
13.8 million – The number of Americans expected to suffer from it by 2050.
65 seconds – The amount of time between Alzheimer’s diagnoses in the United States this year. By 2050, that should fall to 33 seconds. Worldwide, a new case of dementia develops every 3.2 seconds, according to the BrightFocus Foundation.
16.1 million – The number of Americans who act as unpaid caregivers for someone suffering from dementia.
123 percent – The increase in deaths
blamed on Alzheimer’s between 2010 and 2015, owing both to better awareness and a greater number of individuals with the disease.
140,000 – The number of Virginians age 65 and older suffering from Alzheimer’s as of 2018.
462,000 – The number of Virginians in
2017 who served as caregivers to someone with Alzheimer’s or related dementia.
$6.64 billion – The estimated value in
2017 of the unpaid hours of care provided to these patients.
$277 billion – The projected cost this year of Alzheimer’s and other dementia care in the United States.
$1.1 trillion – The estimated cost of that care by 2050.
$22,155 – The average amount Medicare
spent for each Virginian with dementia in 2017.
Two-thirds – The proportion of Alzheimer’s patients who are women (women tend to live longer than men).
1.5 times higher – Hispanics develop
Alzheimer’s and related dementias at a higher rate than Caucasians. African Americans’ rate is twice as high as Caucasians.
One in three – The number of Alzheimer’s caregivers who are themselves senior citizens. Two-thirds of caregivers are women. – Ben Swenson Sources: The Alzheimer’s Association, BrightFocus Foundation. Additional research National Institute on Aging, Centers for Disease Control and Prevention.
| WEDNESDAY, 06.20.18 | CARING FOR THE AGING | THE VIRGINIAN-PILOT | 5
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Wellness opportunities such as Yoga already engage many WestminsterCanterbury residents. The new 1,800 sq. ft. Wellness Studio will provide even more opportunities to stay healthy.
New Wellness, Social and Dining Options
In addition to its focus on the security of health care for life, Westminster-Canterbury also strives to create opportunities for residents to live each day to the fullest in a beautiful beachfront setting. This summer residents will have access to a brand-new 1,800 sq. ft. Wellness Studio for fitness classes. In Spring 2019, a new Clubhouse Lounge and Café will open, featuring a reading lounge with computers, and gathering space to enjoy all-day casual dining plus spectacular views of the Bay. The Revitalization Project will also allow residents to enjoy expanded dining venues and menus, offering exceptional cuisine in a variety of styles and settings.
This rendering shows the proposed Wellness Studio.
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| WEDNESDAY, 06.20.18 | CARING FOR THE AGING | THE VIRGINIAN-PILOT | 7
The importance of early detection H
alf of the Americans suffering from Alzheimer’s don’t know they have the disease; often, people in the early stages think their symptoms are just normal aging. In truth, the symptoms are different – and, advocates say, early diagnosis can ease the burdens of dementia, not only for patients and their families but also for the communities that are heavily invested in senior citizens’ well-being. Here are six advantages to early detection.
A better medical picture
Diagnosis in the first stages of dementia establishes a cognitive baseline that medical professionals can use for comparison as the disease develops. This allows doctors to recognize the progression and helps them tailor treatments to specific stages of the disease. Patients can take advantage of clinical trials and get to know their care team before cognitive impairment alters these relationships.
The chance to change
Often Al zhei mer ’s patients suffer from more th a n one ai lm ent. Ea rly detection helps care providers manage concurrent conditions that may aggravate dementia. Patients also have the chance to make lifestyle changes – quitting smoking or improving diet, for instance – that can help alleviate symptoms, and to alter living quarters to make them easier and safer to navigate.
Getting affairs in order
There are lawyers, accountants and social workers who specialize in the matters that older people encounter toward the end of life. Early detection offers the opportunity to make one’s wishes known in an advance healthcare directive and in estate planning. There’s also the chance to communicate clearly with loved ones before the disease damages or destroys that.
Tapping community resources
Jewish Family Service of Tidewater and Freda H. Gordon Hospice and Palliative Care:
A Continuum of Care
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Alzheimer’s disease
Myth Everyday
objects and substances cause the disease.
Fact There is no
evidence that aluminum cans, silver (amalgam) fillings, flu shots or artificial sweeteners cause memory loss or Alzheimer’s. In the 50-plus years that researchers have been using modern methods to study the disease, various explanations have emerged about its origin. The best working theories describe Alzheimer’s development as a product of nature and nurture, but the existence of a single cause – especially the factors above – has been thoroughly debunked.
paid caregivers. On average, they lose about $15,000 of income annually when they take on this role; there is also a physical and emotional toll from endless hours of caring for a loved one. Early detection gives caregivers the chance to prepare and learn from others.
Jewish Family Service of Tidewater provides skilled home health care, in-home personal care, counseling, and a continuum of social services. “JFS has proven to be exceptional in the care of our patients. Home health, physical therapy, and nursing have guided many speedy recoveries.” — A local orthopedic surgeon
Freda H. Gordon Hospice and Palliative Care provides physical, emotional, and spiritual support for both the patient and family. Both hospice and palliative care focus on quality and comfort when faced with a life-limiting illness. “I couldn’t have wished or prayed for any better care than that which was given to my mother…She knew she was loved and cared for. Thank you to everyone who touched her life and our family!”
— A grateful family member
The Alzheimer’s Association exists in Reduction in large part to provide free resources for healthcare costs people navigating the disease. Too often people reach out for help only at a crisis stage, but this organization, along with other senior services, provides links to professionals and programming that can keep patients engaged and socialized – an important aspect of treatment.
Care for the caregiver
Many of the hardships associated with Alzheimer’s fall on the shoulders of un-
Early detection can help planners anticipate the intensive and costly medical and social care sufferers require. The Alzheimer’s Association estimates that by midcentury, early diagnosis could save $7.9 trillion in healthcare costs, much of which is borne by public funding such as Medicare and Medicaid. – Ben Swenson
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BILL TIERNAN | FOR THE VIRGINIAN-PILOT
Gay and Robert Boggs at home in Newport News, doing shoulder rolls they learned in a class. Soon after he was diagnosed in January 2017 – he was 58 – she called a 24-hour help line.
Care for the caregiver Rejecting isolation: One couple’s early step By Ben Swenson
Gay Boggs remembers the crushing diagnosis well. It was January 2017 and her husband, Robert, was diagnosed with Alzheimer’s disease at the young age of 58. “I was devastated,” she said. “I went through a spell where I cried a lot and felt lost.”
The news thrust her into a role that some 462,000 people in Virginia, and more than 16 million nationally, fulfill for sufferers of Alzheimer’s and other dementias: unpaid caregiver. In 2017, according to the A lzheimer’s Association, family members and other caregivers like Boggs provided 18.4 billion hours of
uncompensated care, valued at $232 billion. Caregivers play a critical role in the course of treatment for Alzheimer’s disease, which can be neither reversed nor cured. As it progresses, patients require increasing levels of help with day-to-day tasks. The constant attention paid to a loved one experiencing cognitive
Alzheimer’s disease
Myth There are effective long-term treatments for Alzheimer’s.
Fact While scientists are working
hard to understand Alzheimer’s and formulate the best approaches for care, there are no treatments that can stop or reverse its progression. Doctors prescribe medications to temporarily suppress some of the symptoms, but Alzheimer’s irreversibly changes the brain, and patients encounter a gradual decline ending in death. Diagnosing the disease early enough, however, affords the benefit of access to medical and social resources that can ease the burdens on the patient and caregiver.
decline can be so physically, emotionally and financially draining that it hurts the caregivers’ health as well. Fortunately the Boggses found a community of individuals navigating similar difficulties through the Alzheimer’s Association Southeastern Virginia Chapter. The Newport News couple began attending the Peers & Partners Early Stage Support Group soon after the diagnosis. The local chapter serves an area totaling 7,400 square miles and has branch offices both in Norfolk and in Newport News. The organization hosts support groups throughout southern and eastern Virginia. T h e s e me et i ng s offer productive dialogue about what partners can expect as the disease progresses, said Boggs, but there are also breakout sessions exclusively for the patients and for the caregivers that explore issues such as respite care when the demands of continual attention become too taxing. Finding groups like Peers & Partners is critical for caregivers and their partners, according to Lori La Bey, founder of the Minnesota-based national advocacy group Alzheimer’s Speaks. La Bey, who cared for her mother during 30 years of dementia, is a consultant, keynote speaker and producer of online media, webinars and a radio show focused on Alzheimer’s and related dementias. Support groups, she said, are especially important because caregivers experience a flood of strong and sometimes negative emotions, such as frustration, anger, isolation and depression. “There’s so much shame wrapped in those emotions, but everybody feels these things,” she said. “Caregivers often feel that it’s not OK to have the wide variety of emotions that exist. If you can talk to someone who gets you – that is a great relief.” Much of the support for Alzheimer’s patients and their caregivers has flourished online, where people can find comfort in the ease of access, number of contributing voices, and veil of
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anonymity. Even perusing chat rooms or other forums without adding comments can be helpful. The choices caregivers face are not easy, and people find comfort in the frank input of others who have gone before them. In an online message forum called ALZConnected, for instance, one poster identified as “abc123� mused on promises made to a parent with Alzheimer’s never to put him in a nursing home. But the round-theclock attention, needed for bathing, feeding, medication and safety, made keeping that promise impossible. “Selkirk60� replied, “Asking a child or spouse to make such a promise puts the person in a terrible position. Who knows what will happen in this life? I am grateful my mother never asked, because I would only have promised to love her always, and to arrange for her care if I couldn’t do it myself.� Using the wealth of resources available to caregivers requires an easy but proactive first step, La Bey said.
Alzheimer’s disease
Myth Family history is the key factor in determining whether you will develop Alzheimer’s.
Fact It is unclear how large a role
family history plays. Research into the causes is continuing. Scientists are also considering whether a variety of influences, including environment, lifestyle and other health conditions, can increase the chances of developing it.
Gay Boggs works on a painting of hydrangeas, her husband Robert’s favorite flower, as he paints a mountain scene during a class at the Denbigh Community Center in Newport News. Teaching it is artist Candy DeJesus of Williamsburg.
“Nothing can change if you don’t have a conversation,� she said. “Check in and ask for support,� whether that’s a minister, medical professional or social worker.
For Boggs, that initial gesture was a call to a 24-hour help line provided by the Alzheimer’s Association. She reached out soon after her husband’s diagnosis and dis-
covered resources to help them. The couple now attends programs through the Alzheimer’s Association designed for early stage Al-
zheimer’s patients and their families, including Art Matters: Early Stage Arts Engagement & Socialization, held at both the Chrysler Museum of Art and the Peninsula Fine Arts Center. Gay Boggs credits these programs with cultivating a newfound appreciation for beauty at an especially difficult period in their lives.
A supportive community has helped her face the reality of her new role as a caregiver, she said. “It’s stressful, you’re so emotional, and you need to be able to alleviate some of that stress because you have such a journey to go through,â€? she said. “Staying involved has been the greatest thing because we met other people just like us.â€? â–
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DALE T. GAUDING | SENTARA
A new home seeks a well-rounded life for its residents By Ben Swenson
Fancy was the first of her kind. Those who live in the Sentara Rehabilitation and Care Residence in Chesapeake are accustomed to a daily stream of staff and visitors passing through, but they had never seen the likes of the 22-year-old mare. She and her handler, from nearby Grubb Grove Horse Farm, walked the edge of a courtyard, greeting seniors seated in the shade of the building. The residents, animated, stroked her coat and fed her apples and carrots. The horse even ducked inside the building briefly to visit with those unable to come out and meet her. This is not the sort of program common at long-termcare centers, but then this facility is different than most. Sentara opened the center last year, using an organizational design employed by only a small fraction of geriatric facilities in the nation. The so-called “household model” eschews regimented efficiency in favor of features of home. The facility’s administra-
tor, Karen Wilhelm, a registered nurse, said the baby boomer generation is turning the traditional model of institutional elder care on its head. “Since 2014, this type of care has become more patient-centered,” she said, rather than being built around rigid regulations. This novel convalescent home consists of 120 beds divided among four separate living areas, or households. At the center of each is an open dining room and kitchen with granite countertops. (The staff is permitted to prepare food for residents outside of usual mealtimes.) Individual, private bedrooms are arranged around the perimeter of each household. Alcoves sit discreetly along hallways so that necessary hardware, such as medical equipment and supplies, can be stowed out of sight. T h e fac i l it y ’s Ga rd e n Spring House is designed as a safe household for residents suffering from Alzheimer’s disease and other dementias. There, a radio plays residents’ favorite music in a common area, which includes a gas log fireplace
and sofa. A diffuser fills the room with the scent of lavender, which officials said has a calming effect. Residents also have the option of spending time outside in a fenced-in lawn that’s open and well kept. “Many of our residents used to love sitting on their porch,” Wilhelm said. “We can offer that to them – fresh air, sunshine and the beauty of the outdoors.” The facility’s designers included these elements based on emerging best practices in senior care identified by experts at Eastern Virginia Medical School, the Alzheimer’s Association and the Sentara Neurosciences Institute. Mike Encarnacao, a Chesapeake resident whose mother lives in Garden Spring House, said its additional flourishes help create an environment that eases the stress associated with Alzheimer’s. He’s particularly happy with the level of attention staff pays to residents, he said. “The manpower that is on the floor 24-7 is a big difference from where she was before,” he said. His mother experienced a couple bad
SENTARA
Donald Hulbert Sr. feeds Fancy at a Sentara care center in Chesapeake that uses new best practices identified by researchers.
Alzheimer’s disease
Myth Only senior citizens and their families need to be alert for signs.
Fact Most people who develop
Alzheimer’s begin to notice symptoms after their mid-60s, but as many as 5 percent of people living with the disease in the U.S. showed signs as early as their 30s. Nearly one in 20 cases in the U.S. is considered early or younger onset, so even busy adults seemingly in their prime should consult their doctor if they suspect that memory problems are more than just everyday forgetfulness. (See “Alzheimer’s vs. Old Age” on Page 11)
falls at the facility where she previously lived. Unlike most senior care facilities, Sentara’s staff is
cross-trained to perform any needed task in a household, according to Wilhelm. Nurses cook. Dietary staff clean.
Wilhelm said even she will tidy up when necessary. This system allows employees to be responsive to residents’ needs right away, rather than having to find colleagues who can do certain jobs. Keeping staffing consistent in specific households is also a priority, Wilhelm said, particularly at Garden Spring House, where residents need to see the same faces day after day. A little more funding is needed for this arrangement, because of the staffing and versatile food options. But the residents aren’t paying for those amenities; Sentara is, Wilhelm said. “There are no additional fees for families,” she said. “The room and board rate may be a little higher than a traditional nursing home because all of the rooms are private.” Tina Waring, director of patient care services for Sentara Life Care, the system’s senior care division, said family input is also driving priorities at geriatric facilities. Unusual programming not only offers novel experiences for residents, but it also arouses different senses, an important means of stimulation for the aging body and brain. Fancy’s visit to this care center is an example of the type of programming that is breaking the mold of traditional senior care, Waring said. “Here we’re focusing on residents’ cognitive, physical, creative and spiritual existence,” she said. “We want this to be more than just table games and bingo.” ■
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ALZHEIMER’S AND RELATED DEMENTIAS VS. OLD AGE AREA OF CONCERN
ALZHEIMER’S DISEASE AND RELATED DEMENTIAS
Memory loss
Continuing forgetfulness that disrupts everyday activities, such as repeatedly asking the same question, failing to remember recent conversations or placing common items in inappropriate places (say, a purse in a pantry). Substituting or forgetting widely used words, such as “chair� or “sun.�
Temporary memory lapses in common situations, such as someone’s name or an item needed at the store. Misplacing wallets, keys or phone but finding them after a search. Forgetting words or memories that come to mind later.
Temperament
Frequent, abrupt mood changes. The onset of strong emotions not present before dementia, such as depression or paranoia. Retreating from enjoyable or lifelong hobbies and interests.
Frustration with the ongoing challenges of old age. Jadedness with once-emotional triggers such as work issues, politics or sports. Maintaining rigid daily routines that are uncomfortable to veer from.
Dimensional awareness
Becoming confused or unaware of well-known time indicators, such as seasons, months, or day and night. Inability to distinguish contrasting colors; problems with spatial orientation such as depth perception. New difficulties with reading on a page or screen.
Forgetting the day of the week or a loved one’s birthday but remembering it later. Suffering from conditions that increasingly restrict normal functions, as with cataracts and eyesight.
Cognition
Difficulty with making common decisions or planning daily activities. Adverse disruptions from an inability to complete ordinary tasks, such as making lunch. Increasingly poor judgment, such as buying items or giving away too much money. Lack of awareness of bad decision-making.
Forgetting an important step in an involved process, such as following a recipe. Using poor judgment every once in a while but identifying the error and not repeating the mistake.
Common with non-Alzheimer’s dementia. Frequent sleep disruptions and visual hallucinations. Overly impaired physical changes, such as slow movement, poor motor skills and imbalance.
Normal physical changes associated with aging, such as reduction of strength, as well as an increase in soreness and fatigue.
Physical limitations
OLD AGE
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