Women and Alzheimer’s Disease the Caregiver’s Crisis

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Women and Alzheimer’s Disease the Caregiver’s Crisis

“The stress is unbelievable.”

“You can’t even count on the

disease itself. Some days are bad and

some are good. The person’s function changes day to day.”

“When he was first diagnosed, my world came to a total and complete stop. I couldn’t breathe. Your life as you planned it is done.”

“It is a very, very lonely life at this point, and I am still in the early stages.”

—Women who care for a loved one with Alzheimer’s disease

Table of Contents

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Dear Friends,

I am proud to present the results of our national study from the Working Mother Research Institute, Women and Alzheimer’s Disease:The Caregiver’s Crisis.

Today, 10 million women battle Alzheimer’s or care for someone who has this disease. Alzheimer’s is of particularly urgent concern for women. We are not only more likely to develop the disease than men, but women are also more likely to take on the role of caregivers for parents and in-laws with this degenerative disease. Many women are raising children and studying for the CPA exam at the same time that we are caring for loved ones with Alzheimer’s.

To understand what the nation is facing, the Working Mother Research Institute surveyed 2,479 women nationwide, including more than 1,200 women who are currently caring for an Alzheimer’s patient or who have done so during the past five years. Our findings, detailed in this report, are sobering.Women say that even as the disease takes away their loved one, it also collects its toll on the caregiver’s life: on her kids, her health and psyche, and her career.

I want to thank GE for sponsoring this important research study, and for supporting our efforts to disseminate the findings as broadly as possible.This study would not have been possible without the help of Tamanna Bembenek and Pat Pearman at GE.

I also want to thank and recognize our knowledge partner, the Alzheimer’s Association, and their wonderful team of experts for generously sharing their vast information resources and understanding of Alzheimer’s.

We invite you to study and share this Working Mother Research Institute report for an abundance of revelations about how women are coping as caregivers, and how both the workplace and the medical establishment can better meet their needs.

For even more data from our survey, please visit workingmother.com/alzheimers. For more information on Alzheimer’s, please visit alz.org.

All the Best,

Carol Evans

PRESIDENT

Working Mother Media

THE CAREGIVER’S CRISIS 3

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Dear Readers,

 

We are proud to sponsor the Working Mother Research Institute’s Alzheimer’s study, which sheds a new light on the impact of Alzheimer’s disease on women caregivers, as well as women’s knowledge of the disease.

At GE, we are committed to developing solutions to diseases like Alzheimer’s by enabling physicians to make more confident medical decisions.We know Alzheimer’s disease is approaching epidemic status – that approximately 36 million people are living with dementia, including Alzheimer’s, and that by 2050 the number of cases will more than triple.

We are taking a comprehensive approach to understanding Alzheimer’s through research to uncover the causes, risks and physical effects of the disease. Our commitment to clinical knowledge and technologies will aid the fight in this epidemic, and will help physicians in the acceleration of diagnosis and improvement of personalized treatment decisions in all stages of the disease.

Additionally, we maintain a deep commitment to disease awareness and are partnering with expert organizations around the world to drive policy to support patients, families, and caregivers affected by the disease, and to examine ways to reduce the costs involved.

The research uncovered in this Working Mother Research Institute report will be instrumental in understanding the burden that caregivers face when managing Alzheimer’s disease, and, in turn, help employers create policies that benefit those who are living with the disease.

Sincerely,

Pascale Witz

PRESIDENT AND CEO

GE Healthcare Medical Diagnostics

THE CAREGIVER’S CRISIS 5

The stories grab headlinesthe Supreme Court

Justice who steps down from the bench to care for her ill husband. The famous journalist and former California first lady whose father stopped recognizing her. The college basketball coach with the all-time highest number of wins in the country, diagnosed at age 59, who does daily brainteasers in hopes of keeping her cognitive function as long as possible.

What Sandra Day O’Connor, Maria Shriver and University of Tennessee women’s basketball coach Pat Summitt have in common is Alzheimer’s disease. Over the next twenty years, no disease will more profoundly affect U.S. women—both as victims and as caregivers—than this fatal disease. It is the most common form of dementia. It causes the brain to shrink and erode over time as brain cells die. Its victims lose the ability to learn, remember, communicate and eventually perform life-sustaining functions. It changes every relationship and shatters every vision of the future.

Of the estimated 5.4 million Americans with Alzheimer’s, women make up almost two thirds of cases. As well, they provide the majority of unpaid care for loved ones suffering from the disease.The burden is colossal: Based on data from the Alzheimer’s Association and The Shriver Report: A Woman’s

Nation Takes on Alzheimer’s, which examined the effect of the disease on U.S. women, Working Mother calculates that 6.7 million women devote some 10 billion hours per year to caregiving for Alzheimer’s patients—which works out to about $126 billion in unpaid labor. Everyone has a stake in addressing Alzheimer’s: individuals, the government, the medical community and employers.

“We cannot think of Alzheimer’s as a disease of one person,” says Heather Snyder, senior associate director of medical and scientific relations for the Alzheimer’s Association.“There isn’t an area of a caregiver’s life that’s not affected: her job, her relationships, her children and even her own health.”

In order to understand these effects, the Working Mother Research Institute designed a national survey with the sponsorship of GE and

the assistance of our knowledge

partner, the Alzheimer’s Assocation. We surveyed nearly 2,500 women, including more than 1,200 current and former caregivers, to find out what women know about their own risks; and if they are caring for a loved one with Alzheimer’s or have done so recently, we asked how the caretaking role affects them.

What we found is dramatic. Caretakers provide hundreds of hours of assistance every month while juggling careers, marriages and kids. (In fact, almost one-third are part

of the “Sandwich Generation” with children under 18 living at home.) Compared with their predecessors— women who have cared for a loved one with Alzheimer’s within the past five years—respondents who are currently in the throes of caregiving are logging 30 percent more hours, spending more of their own money and overwhelmingly attending to loved ones at home. Many put off

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 their own doctor’s appointments and are not saving for retirement.

The costs aren’t just felt at home but in the workplace, too. More than half of these caregivers say they need to adjust their work schedules to accommodate caregiving and

39 percent say they have passed up promotions because they can’t manage additional responsibilities. Caregivers are typically at the age and career stage of senior leadership (with an average age of 54 in our survey), yet they’re at high risk of leaving the job because of caregiving demands. Even so, despite these risks, elder care receives less human resources attention and is often among the first places companies trim benefits.

Stretched thin? More like frayed. Nearly half of our respondents say they feel overwhelmed, and one third say caregiving has triggered depression. Many—58 percent— don’t know how long they’ll need to provide care.

“The bottom line is that too many women find themselves caught in a role they did not anticipate, sustain only at great personal cost, and which has no clear end date. It’s an untenable situation,” says Carol Evans, president of Working Mother Media.

And it will only get worse.

As the baby boomers age past 65, the highest risk group for the disease, the number of cases could skyrocket to 16 million by 2050, according

to the Alzheimer’s Association.That could mean as many as 45 million Americans may become caregivers.

“The next five years are critical to make a big push to understanding this disease better,” says Douglas Scharre, MD, director of the division of cognitive neurology at Ohio State University Wexner Medical Center and author of Long-term Management of Dementia.

What’s to be done? Here’s the short list: Lobby for research dollars, get doctors to make cognitive screening a standard part of an annual physical, develop community resources like

adult day care centers and align workplace culture (yes, flexibility!) so it works for working caregivers.

Who We Reached

From January 6 to 11, 2012, we surveyed 2,479 women online. Nearly all have children, and more than half,

58percent, are employed.We define a current caregiver as someone who provides unpaid assistance for a friend or relative with Alzheimer’s disease.A former caregiver is anyone who has given this assistance within the last five years.We excluded professional, paid caregivers.

Who Is a Caregiver?

In the near future, maybe a better question will be, who isn’t? In our study a clear picture emerges.The respondent who currently cares for an Alzheimer’s patient is a woman with lots of competing priorities—a job, children at home, a spouse or partner. Most are below retirement age.According to our study, these caregivers more often than not are:

Between the ages of 50 and 59, average age 54

Married

Mothers (of whom nearly one third have children under age 18)

College educated (74 percent)

Employed, with a mean individual annual income of $43,500

Attending to patients with mid- to late-stage disease, most often women

Caregiving in their homes or the patients’ (only 16 percent are using nursing homes or outside facilities)

Assisting at least 30 hours per week

In it for the long haul (roughly half have been providing help for three or more years)

What Do Women Know About Alzheimer’s?

Forewarned is forearmed? Let’s hope so.Women today—both on the caregiver and patient side—are well informed. Sixty percent of all women, and 83 percent of caregivers, have researched the disease.They’re aware

EPIDEMIC

PROPORTIONS

Alzheimer’s disease is the sixth-leading cause of death. One in eight people age 65 and older has Alzheimer’s; after age 85, the number jumps to nearly one in two. From 2000 to 2008, Al- zheimer’s deaths shot up 66 percent while other lead- ing causes of death (breast cancer, heart disease, HIV, stroke) all dropped. By 2050, there could be 16 million cases with an economic impact of more than $1 tril- lion per year. According to The Shriver Report, we’re not prepared: 72 percent of Americans have not planned care options if they were diagnosed.

family history and lifestyle factors can impact their risk for developing Alzheimer’s.They know, too, that the disease is currently incurable and is not “normal” aging.The majority of current caregivers—81 percent—are tending to a loved one with a formal Alzheimer’s diagnosis (versus half of former caregivers.)

But more outreach is needed to spread the word about factors, such as head trauma, that have been linked to Alzheimer’s. Because of a strong family history of young-onset Alzheimer’s (her husband, Jim, has it at 49, and both his brother and mother died of the disease), Karen Garner, 42, a mother of two living in Newport News,Virginia, will not let her elementary-school-aged children play contact sports.

THE CAREGIVER’S CRISIS 7

Smart Stats

DOCTORS ARE RELUCTANT TO BRING UP ALZHEIMER’S

ALL IN THE FAMILY

have a relative with Alzheimer’s.

Do you or did you ever have

If yes, what was the person’s

a relative with Alzheimer’s?

relation to you?

YES

NO

Total women

47%

53%

Age 54 & under

49%

51%

Age 55 & over

46%

54%

Caucasian

49%

51%

Black

42%

58%

All minorities

43%

57%

Minority women are more likely to select sibling (3.4% vs. 1.5% of the total sample).

Black women are even more likely to select sibling (4.1%) and are also the most likely to select father (20.7 % vs.

16.7% of the total sample).

Note: Based on 2,479 total responses.

For even more data from our survey, visit workingmother.com/alzheimers

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Simply put, the costs are colossal. In 2012 alone, the

Alzheimer’s Association estimates the disease will cost the U.S. $200 billion. The disease can rob a family of a breadwinner, while also limiting the ability of the remaining spouse to advance and earn more. It may mean a woman curtails her business travel or turns down a promotion because an elderly parent can’t be left alone.Those are the obvious costs, but there are many that are difficult to quantify. In this section, we’ll look in detail at dif- ferent kinds of costs (financial, psycho- logical, health and workplace) in terms of what our survey reveals.

Family Dynamics Disrupted, Dreams Rewritten

Alzheimer’s is a disease that hits home—now harder than ever.Ac- cording to our survey, the number of

The Costs

caregivers who live with their patient has more than doubled, to 40 percent of current caregivers from 15 percent of former. By contrast, both nurs- ing home and assisted living use has declined sharply.

Why is care shifting (or staying) home? One third of caregivers say they want to provide care themselves, while a quarter say they are respecting the patient’s wish to avoid a nursing home or assisted living. What’s trou- bling is the largest group of caregiv- ers—39 percent—who appear to be trapped in their role (no other family member could do it, it felt “expect- ed,” or they couldn’t afford or didn’t like the available facility care).

Those who want their loved one at home often underestimate how hard it will be, says Bob O’Toole, president and founder of Informed Eldercare Decisions, which helps families devel- op and implement caregiving plans. In

“I had him tested first be- cause I knew one of us was losing it. I didn’t know which one, but I felt pretty strongly that I knew what I was doing.” —Karen Parks, 61, Plymouth, Minnesota, caregiver to her husband, Jerry, 62

late-stage disease, a patient will not be able to feed or toilet independently.

“People are naive about how much impact they’ll feel and how long they may have to do it,” he says, noting the average life expectancy after diagnosis is roughly a decade, but can be twice as long.

According to The Shriver Report, approximately one in four women promises to keep her loved one at home, and a third find the vow diffi- cult to keep.Alzheimer’s victims make

THE CAREGIVER’S CRISIS 9

MOST CARE HAPPENS IN THE HOME

 

The percentage of caregivers who bring Alzheimer’s patients into their homes has increased dramatically. Minorities are more likely to provide care in the patient’s home.

Former Caregivers (past 5 years) Current Caregivers

HOURS AND YEARS OF CARE

Other

The weekly commitment increases over the years.

Average hours of care provided per week

Less than 1 year Between 1 and 3 3 or more years

Time caregiver has been providing care

“As devastating as this is for the patients, eventually they are unaware of the situation. The caregiver never gets that break.They are living with this loss on a daily ba- sis, saying goodbye a little more every day, having to cover for their loved one a little more every day.”

Douglas Scharre, MD, director of the division of cognitive neurology at Ohio State University Wexner Medical Center and author of Long-term Management of Dementia

before admitting a loved one to a facility,” notes Potts.“There are very few geriatric psychiatry units for those Alzheimer’s patients who be- come violent.”

From the moment of diagnosis— even if the ill person is still fairly competent—the whole family dy- namic is upended because the future must be reimagined.“This type of di- agnosis sucks your hopes and dreams. Your dreams of saving for a big vaca- tion with the kids, the dream of hav- ing a nicer home and saving for the kids’ college, the hopes of working hard and that paying off in a retire-

particularly difficult patients.They lose the ability to learn new things, to remember what they did minutes ago. Social discretion goes; they become egocentric and sometimes violent. Sixty percent wander and get lost.

“Think of a person with the physical abilities of an adult, but with the judgment of a toddler and all the accompanying dangers—knives, power tools, cars, matches,” says Ellen Woodward Potts, co-author with her husband, neurologist Daniel C. Potts, MD, of A Pocket Guide for the Alzheimer’s Caregiver.

Lynnetta Hess, 41, a stay-at-home

mom of five living in Rapid City, South Dakota, says if she’s not vigi- lant, her husband, Quinten, 43, will inadvertently double- or triple-dose himself on cold medicine when he doesn’t feel well, reset passwords on their computer or leave food burning on the stove.

The reality for many families, notes O’Toole, is that once caregivers real- ize they’re overwhelmed, a bed in an Alzheimer’s ward is both unaffordable and unavailable.

“In long-term care facilities, there are relatively few dementia units, so families often must wait for months

ment you could enjoy together,” says caregiver Karen Garner.“One day, you wake up and realize those hopes and dreams that kept you getting out of bed and motivated to keep pushing for tomorrow and working hard are just no longer viable and no longer a possibility. It really is a devastating realization.”

How Do the Kids Fare?

Few studies have looked at the impact of caregiving on kids who live at home. In our study, almost one third of caregivers are part of the “Sand- wich Generation” that’s caring for el-

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 THE DIAGNOSIS DILEMMA

 

No one wants to hear “You have Alzheimer’s.” Yet, for care planning and a shot at clinical drug tri- als, caregivers say it’s best a family know sooner rather than later.

Only a third of patients in our survey were diagnosed at the disease’s early stage. Roughly half of caregivers say they wish their loved one had been diagnosed sooner.When asked if they’d want to be diagnosed early themselves, the an- swer shot up to 84 percent—a resounding yes.

Marla Vlieger, 42, of Denver, is grateful that her mother-in-law, Elaine, received an early diagno- sis. Both Marla and Elaine have taken classes to learn coping strategies that will help Elaine live independently longer, a huge help to Marla, who works and has four children ranging in age from 2 to 28. Marla’s also joined a caregivers support group, which she says is helping her come to terms with the disease and plan for what’s ahead.

“Early diagnosis is helping Elaine participate in decisions about her future,” she says.“And

for me, knowing what’s coming helps me move towards acceptance.”

The Vliegers have been lucky. For most people,

3.5years elapse, on average, between the start of symptoms and when a doctor is seen, says Doug- las Scharre, MD, director of the cognitive neurolo- gy division at Ohio State’s Wexner Medical Center.

So what are the hurdles? Some practitioners are hesitant to diagnose Alzheimer’s—a hangover, Scharre says, from a decade ago when little could be done. Now, however, there are several FDA-ap- proved drugs that, while not extremely effective, may help symptoms. There are also many options for clinical trials. Families resist discussing a loved one’s condition with a doctor because they feel like it’s “tattling” or violating confidentiality. But that’s a mistake, Scharre points out, because the loved one often doesn’t realize the extent of his or her changes.“There’s so much more we can do for patients when we can screen and identify early,” he says.

ders while also raising children.When you factor in adult children who live at home for financial or other reasons,

WHEN IT COMES TO DIAGNOSIS, EARLIER IS BETTER

three quarters of caregivers in our study have kids at home.About 15 percent of caregivers in our survey report getting regular help from their own children. Some children develop caretaking instincts and compassion. For others, living with an unpredict- able, incompetent adult is a huge source of stress.

Lynnetta says one of the most pain- ful parts of the disease is watching Quinten and their five children, ages 15 to 21, struggle with his diminished role in family life. She spends a lot of time running interference when tempers flare.A family counselor sug- gested that Lynnetta officially take over parenting. She and the kids remember the decision, but Quinten does not.

Percentage of caregivers who wish their loved ones had been diagnosed earlier

Of respondents who answered “yes,” here are the reasons why:

So their loved one could have…

Benefited from appropriate interventions 67%

Participated more in making decisions about medical options 51%

Participated in clinical studies 43%

Participated more in making deci- sions about financial matters 40%

Participated more in making deci- sions about living arrangements 39%

Made plans to spend time with family/friends 35%

Made better plans for long-term care 35%

Made plans to take trips 20%

THE CAREGIVER’S CRISIS 11

Smart Stats

MORE THAN A THIRD OF CAREGIVERS PROVIDE

60-PLUS HOURS OF CARE EACH WEEK.

Current Caregivers Former Caregivers

Types of care provided

Providing companionship

Communicating with health professionals

Transportation

Meals/cooking/feeding

Medical: scheduling appointments

Housecleaning/laundry

Medical: managing/administering medicine

Financial

Implementing care plans

Bathing/dressing/toileting

Hiring/supervising care

Other

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Her husband, who numbers among the estimated 10 percent of Alzheimer’s patients diagnosed before the age of 65, gets frustrated when the kids don’t obey him as they once did, and the kids know they can no longer trust Dad’s judgment. Recently, Quinten was unaware that he’d locked his son out of the house in freezing conditions.

The disease has divided Laura Suih- konen Jones’s family. Her son from

aprevious marriage,Tomer, decided to go to boarding school at age 16 because Jones’s husband, Jay, whom no one realized yet was in the early stages of Alzheimer’s, was becoming combative. She says the impact on their daughter, Natalie, now 9, has been even more profound. She has spent a lot of time looking out for her father, but also competing with him for attention.As a result, she doesn’t trust adults to take care of her.

“There has been a tremendous im- pact on her, and I’m not sure how it’s going to turn out,” Laura says.

The Health Cost

Caregiving can make you sick.That’s the terrible irony.

“A lot of research shows the impact of Alzheimer’s means a family care- giver may ultimately become sicker than the person they are caring for,” says O’Toole.

The statistics are stark. Caregivers are at increased risk for heart disease, metabolic syndrome (a trifecta of high cholesterol, blood pressure and blood glucose), depression and anxiety. Un- der chronic stress, caregivers’ immune systems don’t work as well, so they’re more likely to get sick and heal slower if they get injured.

According to The Shriver Report, caregiving spouses of Alzheimer’s and dementia patients have a six-fold increased risk of developing the disease themselves. No one knows exactly why, but it’s likely stress plays a role in precipitating or worsening chronic conditions like diabetes or cardiovascu- lar disease, both of which are known to

increase a person’s odds for Alzheimer’s. Worry looms large for caretakers in our survey—one quarter of them say they have thought they might have Alzheimer’s themselves.The same number say they don’t feel good about their own health.The Alzheimer’s Association estimates that caregiving- related health problems drive health care costs up $8.7 billion annually.

A Labor of Love

Part of the reason caregivers get sick is that they skimp on themselves.

They’ll change soiled bedding, assist a loved one in the shower, cook meals, run a household and sit through their loved one’s medical appointments, but ignore the twinges and aches of their own bodies. Roughly one third of caregivers in our survey say they put off their own check ups.

Pat Pearman, 58, the director of Healthymagination Disparity Pro- grams and U.S. partnerships for GE, spent a dozen years rising at 4 a.m. to take care of her mother, Bessie, who was diagnosed with Alzheimer’s at age 57, more than two decades ago. Each morning Pat would go to her mom’s house to get her dressed and break- fasted, then work a full day, sometimes commuting an hour each way. In the evening the whole family would gather at Grandma’s house, where Pat would make dinner for everyone, oversee her sons’ homework and get Bessie ready for bed.The family would go home by 7:30 p.m.—and the next day, the whole routine would repeat.“I think I walked around for a number of years in a fog,” recalls Pat of the period when she was responsible for her mother. (Bessie, now 85, is unresponsive in a nursing home.) But despite the grind- ing exhaustion, Pat says some good things came out of the experience. Sons Billy and Jim (now 25 and 30) are compassionate adults who are comfort- able around people with disabilities, a perspective she feels will help them in any future caregiving roles.

Many studies have shown that, like Pat,Alzheimer’s caregivers spend more

“Stress destroyed all my routines. I went back to work full-time. I stopped ex- ercising. I packed on 20 to 25 pounds. … Then I had a heart attack.” — Laura Suih- konen Jones, 51, Lighthouse Point, Florida, caregiver to her husband, Jay, 55

time on the activities of daily living (ADLs), such as dressing, bathing, feed- ing and toileting, than other types of caregivers.And when siblings share care for a parent with Alzheimer’s, women are more likely to perform basic daily care while men provide financial sup- port, according to the 2011 MetLife survey Caregiving Costs to Working Caregivers.

Our survey did show a shift away from ADLs (a 20 percentage point drop between former and current caregivers) to other tasks like trans- portation (up 27 percentage points), housecleaning and laundry (up 19 percentage points) and financial as- sistance (up 30 points.) Part of the reason may be that 41 percent of the caregivers in our survey are getting regular help from a nurse or aide, whose standard responsibilities would include ADL care.What’s encouraging is that more than half—61 percent— of these caregivers did get regular help from some source (spouse, sib- ling, etc.) in providing care.

Yet, despite getting help, caregivers aren’t slowing down.

On the contrary, across a dozen tasks measured, we saw more caregivers engaged in all but two. Net, the average time commitment rose 32 percent, from 35.8 hours per week for former caregivers to 47.2 hours for current. That’s more than a full-time job.

Under Pressure

The psychological strain is often heavier than the physical work. In our survey, nearly half of our respondents said they felt overwhelmed and a

THE CAREGIVER’S CRISIS 13

third depressed. They are also sleep deprived (41 percent).

As the disease progresses, the pa- tient often becomes egocentric and socially inappropriate.

“It is a crazy-making disease,” says Nancy Pearce, author of Inside Al- zheimer’s. “It’s ‘How many times will I have to answer this question today?’ The Chinese water torture aspect of the disease can make a

caregiver feel like she’s also losing it.” Before he went into a nursing

home, for instance, Jay would follow Laura around, barraging her with questions about what she was doing now, what they would do next.

As the patient becomes increas- ingly confused in the world, he or she clings ever tighter to a familiar caregiver, says Ken Hepburn, profes- sor, associate dean for research and director of graduate studies in the Nell Hodgson Woodruff School of Nursing at Emory University.“I have had caregivers tell me,‘I can’t even go into the bathroom alone.’”

Lynnetta Hess says Quinten’s lack of boundaries—he’ll stand by her asking constantly who’s on the phone—means she doesn’t chat much with friends anymore.That isolation surfaces in our survey:About one third of current caregivers say they aren’t satisfied with their social lives. One in four hasn’t been out to dinner or a movie in the past six months. Sixty-five percent hasn’t had a vaca- tion in more than a year.

The quicksand nature of Alzheim- er’s disease means the job only gets tougher. In our survey, the majority—

65percent of caregivers—are at- tending to a patient who was ini- tially diagnosed with mid-, late- or severe-stage disease. (An additional

4percent don’t know their patient’s stage.) In the last year of the patient’s life, according to research cited by the Alzheimer’s Association, the major- ity of caregivers (59 percent) feel like they are on duty 24 hours every day. When death finally comes, it’s often a relief.

“[Losing my husband’s] income means the cloth- ing budget is on an as- needed basis and comes out of grocery. Same with medical. Savings is non- existent. Saving for col- lege is not possible.We had to cash in Quinten’s retirement last year,

so there is nothing left there.”— Lynetta Hess, 41, Rapid City, South Dakota, caregiver to her husband, Quinton

The Financial Hit

Beyond the physical and psychologi- cal toll, how much does caregiving actually cost? Plenty.

Karen Parks, a 61-year-old caregiv- er in Plymouth, Minnesota, and mom of four, remembers being frantic with doctors who couldn’t pinpoint why her husband, Jerry, then in his early fifties, was having memory problems and trouble keeping jobs.

“I was scared to death,” she says.“I remember bargaining with doctors, saying,‘I just need him fixed.’ He was the breadwinner of the family, and

I had kids who were going back to college.”

The most dramatic impacts are on families like Karen’s, where young- onset Alzheimer’s (defined as diag- nosis pre-65) means loss of a main source of income and possibly health insurance, too.This is the rarest form of the disease, hitting roughly 200,000 people in the U.S., according to the Alzheimer’s Association.

But even when a job is not lost, there are a host of other costs: expensive prescriptions; items that get broken or misplaced because of confusion; an adult’s worth of house- hold jobs (repairs, cooking) that may now need to be outsourced.Working caregivers often need to pay for adult day care or an in-home aide.

LONG-TERM

CARE INSURANCE

According to Kaiser Health News, only 10 percent of seniors have long-term care insurance. Because Medicare and most private insurance plans offer very limited coverage of nursing home stays (typically they pay for 100 days as “reha- bilitation” after a hospitaliza- tion), long-term care insur- ance is often the only option that covers an Alzheimer’s patient who needs round- the-clock institutional care. Our survey shows surpris- ingly high rates of cover- age—39 percent of current patients and 26 percent of all respondents. However, our data suggest rates of cover- age are declining: There

is a 12 percentage point dip between current and former caregivers in terms of patient coverage. Bob O’Toole, of Informed Elder- care Decisions, says he’s not surprised, given that the business has been unprofit- able and many large insur- ers have stopped offering policies. As a result, policies from remaining providers are getting more expensive and qualifications more stringent.

14 Working Mother Research Institute

CAREGIVING AND CAREER

Current caregivers are more likely to be unemployed than former,

and are more likely to make adjustments to their schedules.

51% of current and 36% of former caregivers of Alzheimer’s patients adjust their work schedules. Here’s how:

Current Caregivers Former Caregivers

Caregivers in our survey reported an average out-of-pocket cost of $2,585 annually.That’s likely quite low. Nearly 30 percent of caregiv- ers in our survey don’t know how much they’re spending, which is

a common finding, says Donna Wagner, professor of social work at New Mexico State University and co-author of The Aging Network, who has studied the costs of care- giving and says that in the chaos of “survival” many families don’t track expenses closely.

Other estimates based on national surveys peg the costs to families

as considerably higher: $5,000 to $34,080 annually.According to the Alzheimer’s Association, in 2011, adult day care averaged $70 per day, assisted living $41,724 annually and a nursing home $78,110 to $87,235.According to the MetLife 2011 Market Survey of Long-term Care Costs, the daily rate for a nursing home bed and adult day care each rose more than

4 percent between 2010 and 2011, outpacing wage growth.

Because it’s not covered by Medi- care or private insurance,“nursing home care can consume the entire salary of a middle class caregiver, not just those in low-skill jobs,” says author Ellen Woodward Potts.

Even getting diagnosed can be pricey. Laura and Jay spent three years and $30,000 on specialists before Jay was diagnosed with Alzheimer’s at age 49.

The Career Cost

“Of all elder caregiving,Alzheimer’s unquestionably carries the largest burden,” says New Mexico State University’s Donna Wagner.“That burden hits working women the hardest.”

The issue isn’t simply that Alzheim- er’s care takes a lot of time, but that it’s emotionally draining and erratic. A woman may be called out of an important presentation because her mother wandered out of the house and got injured or created a conflict at a day care center or with a home

aide. It’s unpredictable and high stress, a recipe for a worker who arrives at her desk drained.And not just for six months. For years.

It dampens (if not wipes out) a woman’s ability to advance.Thirty- nine percent of caregivers surveyed say they have passed up promotions because of caregiving. Slightly fewer, 36 percent, say it has impacted their ability to get ahead. Little wonder, considering that half provide 31 or more hours of assistance each week. For working mothers, it’s likely that this “second job” supplants time that could be used to network or take on stretch assignments. Or even sleep.

In fact, caregiving makes it difficult for women to do the job they have now. Nearly half of respondents say they have difficulty managing the de- mands of work and home, one third don’t think they’re doing their best on the job, and more than a quarter have had their commitment questioned.

Virtually every working caregiver in our study who can flex her sched- ule has done so. (See “Caregiving

THE CAREGIVER’S CRISIS 15

CAREGIVING

DEMANDS

FLEXIBILITY

Caregiving reshapes how a wom- an spends her day and, because Alzheimer’s patients often sleep irregularly, her nights, too. In our study, half of caregivers—nearly everyone who could—flexed their work schedules.They changed shifts, adjusted start/end times, changed roles or reduced their hours.

Demands Flexibility.”) Of the 49 per- cent who have made no adjustments, 40 percent say changes aren’t feasible because they can’t afford to reduce their pay, their job isn’t structured to make it possible and/or their work- place culture frowns upon it.

Wagner says roughly 10 percent of female caregivers cannot make the pieces fit and end up leaving their jobs (in our survey, 6 percent of current caregivers have resigned, twice the number of former care- givers). The Shriver Report found that Alzheimer’s caregivers who are managing a loved one with behavior

symptoms are 68 percent more likely to quit than other caregivers.With the median age of caregivers hover- ing around age 50, that’s a “big loss of training and senior leadership that will be costly to replace,” she notes. Roughly one in four respondents in our survey who cared for an Alzheim- er’s patient within the past five years say they’ve been financially penal- ized (earnings curtailed or decreased) because of caregiving.

Almost 12 percent of respondents in our survey are unemployed but looking for work, a rate that’s higher than the national average.

It’s no surprise, then, that flex- ibility tops a list of benefits— trumping even paid time off—as

CAREGIVERS IN THE WORKPLACE

Providing care can affect the work women do and the paths their careers take.

what caregivers want most. More than 80 percent deem it “very important/important.”

Caregivers want the ability to react to the disease’s shifting demands: to change schedules, switch to a slower career track and have informal permission to

Good News

61% are comfortable talking to their supervisors

64% are comfortable talking to peers

63% agree they have peace of mind that their loved one is safe while they are at work

Bad News

48% find it difficult to manage the demands of work and per- sonal life

39% have passed up a more de- manding job or promotion

32% do not think they are per- forming their best at work

27% feel their commitment to work is questioned

respond to emergencies. Don’t underestimate how

helpful caregivers find informal flexibility, says Ellen Galinsky, president and co-founder of the Families and Work Institute, which studies caregiver issues. “More than anything, employees want their managers to ‘get it,’” Galinsky says.“You don’t want someone looking at you cross- eyed if you have to run out of the office because your parent went wandering and is confused.”

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Women who have been providing care for less than a year report some of the most extreme career impacts.

Implications for Employers

In our survey, 88 percent of caregivers are below retirement age—and

they’re very concerned about Alzheimer’s. Roughly three quar-

ters of current caregivers and more than half of all women have worried they might be diagnosed with Alzheimer’s. More than 40 percent say they’d be willing to be tested to assess their risk for the disease.The 2011 MetLife survey What Americans Think showed more people fear Alzheimer’s disease than heart disease, diabetes or stroke.

Given that, it’s urgent for employers to become savvy about Alzheimer’s. It’s not far-fetched to imagine elder care becoming a defining benefit for Gen X and Y talent, who will be baby boom- ers’ caregivers. In our survey, 61 percent of women say elder care benefits would be an important part of a job search. They want paid time off to attend to

loved ones, but they also rank low- and no-cost benefits—such as caretaking information and a savings plan to cover expenses—nearly as valuable.

Our study shows some good news in the workplace.The majority of caregivers say they’re comfortable talking to peers and supervisors about their situation. But those findings are balanced against more worrisome trends that show women declining promotions, in some cases resigning from their jobs, and/or falling into poor health themselves. The Shriver Report found 46 percent of women tried but failed to get time off for Alzheimer’s care, a troubling finding given we see that flexibility is the crucial support that allows women to balance career, family and caregiving.

Companies shouldn’t abandon caregivers.Work is important for care- givers, because it provides emotional

balance in a life that’s been thrown a big curve, says New Mexico State University’s Donna Wagner.“We’ve found in our research that feeling competent at work can provide a real respite for caregivers,” she notes.

Finally, employers who ignore Alzheimer’s disease do so at the peril of losing seasoned talent of both gen- ders.Though our survey focuses on women, the issue also hits men, who are spending more time than ever as caregivers and who are actually re- porting more work life conflict with caregiving than women, according to Families and Work Institute data.

“Child care benefits help people at the beginning of their career, but elder care hits senior talent,” says that organization’s president and co-found- er Ellen Galinsky.“It’s crazy to lose someone in whom your organization has invested so much.”

THE CAREGIVER’S CRISIS 17

WHAT EMPLOYERS CAN DO RIGHT NOW

Flexibility. If you do nothing else, look for ways your organization can informally support caregiv- ers, whether through comp time, telecommuting, start/end time adjustments, job-share, shift change or other methods. Flexibility is what keeps caregiv- ers on the job because it allows them to make the pieces fit, to cope with the disease’s shifting burden. Encourage managers to understand something about Alzheimer’s disease and the unique burdens it places on caregivers.

Provide paid sick time and officially allow it to be used for caregiving.

Provide “How To” information and tools for care-

giving. Yes, survey respondents want paid time off to attend to loved ones, but they also rank these low- and no-cost benefits nearly as high.What a majority of caregivers say they would find helpful is caregiv- er training, elder care and a savings plan to cover expenses. Caregivers are also concerned about understanding Medicare/Medicaid reimbursements and the elder care tax credit, as well as looking for tools that would help them coordinate their loved one’s care, transportation and appointments.

Provide up-to-date information on Alzheimer’s prevention and cognitive screening for early

detection. Make sure employees know how lifestyle factors, such as cardiovascular health, affect Alzheimer’s risk. (In our survey, 65 percent of women know there are steps they can take earlier in life to minimize their risks. That’s encouraging, but there’s still room for improvement.) Research shows that there may be a “preclinical” Alzheimer’s stage that begins 20 years before symptoms appear and may be detectable by PET scan. Free, downloadable cognitive screening tests, which can be taken at home and brought to a doctor’s office for review, are available at sagetest.osu.edu.

Create affinity groups. Caregivers want to know they’re not isolated and to get advice from those who’ve been in their shoes. Sixty-one percent of caregivers say it would be helpful to have access to other caregiver insight.The Alzheimer’s Association recently launched a free social community site, alzconnected.org, where caregivers exchange information and experiences.

CAREGIVING AND INCOME

A quarter of former caregivers report

that their pay either shrank or was limited

by the demands of caregiving.

No impactMy salary increased

Tell Congress. The National Institutes of Health allocation for Alzheimer’s research, $498 million for 2012, is less than half the $1.2 billion spent on heart disease research. Alzheimer’s drives health costs way up in this country: $200 billion, estimated, in 2012.

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Summary: America and Alzheimer’s Disease

“It is a crisis already and an enormous crisis about to happen. … Alzheimer’s awareness has been slow to develop in the policy and funding arenas. In part, that’s because it’s only with the rise in the number of older persons that the current—and especially future— prevalence of the disease has begun to be apparent.”

—Ken Hepburn, professor, associate dean for research and director of graduate studies in the Nell Hodgson Woodruff School of Nursing at Emory University and lead developer of the Savvy Caregiver Program

The clock is ticking. Employers can’t afford to overlook the issue of

Alzheimer’s, or delay in addressing it. If current caregiving ratios hold, by 2050, when the number of Alzheim- er’s patients is projected to approach 16 million Americans, that could be 45 million Alzheimer’s caregivers.

As society ages and workers retire later, there will be ever more Alzheim- er’s caregivers on the job, says Ellen Galinsky, president and co-founder of the Families and Work Institute.“Our data shows 49 percent of workers ex- pect to be caregivers within the next five years,” she says. Here’s what our survey found as gaps worth addressing:

Doctors need to be more pro- active. Despite women’s higher risk for the disease, doctors aren’t regularly discussing Alzheimer’s or aging at checkups. More than three quarters of respondents say their physician hasn’t broached either topic.

Asubstantial number of wom- en are stuck in a caregiving role.

Although 30 percent want to provide care themselves, even more—39 per- cent—appear to be trapped (no other family member can do it, it feels “ex- pected,” or they can’t afford or don’t like the available facility care.)

Whether they are tending to someone by choice or by de- fault, caregivers are struggling in every area of life. They are more likely than their predecessors to feel overwhelmed, to feel they don’t have a choice in taking on the role and to be experiencing a financial drain.As well, at a time when extra income is sorely needed, caregiving often places a women’s career on hold—she’s less likely to take a promotion and much more likely to make schedule adjust- ments (scaled-back hours, a leave of absence) that reduce her chances for immediate advancement.

Within the caregiving group, minorities are struggling the most. They spend more on caregiv- ing overall and are twice as likely as white caregivers to spend more than

$10,000 per year.They also have few- er hours of help at home, despite be- ing nearly twice as likely to be caring for a patient in the late/severe stage of the disease.We also found informa- tion gaps: Minorities are less likely than white respondents to know the signs (10 percentage points less) of Alzheimer’s disease; and although they are more likely to have discussed Alzheimer’s with a doctor, minority women are significantly less likely to know about the latest advances—for instance, that a PET scan can give an early indication of the disease (28 percentage point difference).

Caregiver health is a major issue, given that these women often take better care of the loved one with Alzheimer’s than themselves. The Alzheimer’s Asso- ciation estimates that caregiver health problems cost the U.S. $8.7 billion each year.We as a country and as a growing community of caregivers need to be aware and to offer care to the givers themselves.

THE CAREGIVER’S CRISIS 19

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 Methodology

 

The Working Mother Research Institute, with the sponsorship of GE and input from our knowledge partner, the Alzheimer’s Association, designed a survey to illuminate the issues and problems that are most pressing for women who care for loved ones with Alzheimer’s disease.

NewYork City-based research company Walker Communications fielded the national survey through a series of email blasts sent by Survey Sampling International (SSI) in January 2012, and a total of 2,815 individuals submitted online questionnaires. Walker Communications received and tabulated the responses, which were then analyzed by the Working Mother Research Institute.

The final results are documented in this report, which was created by the Working Mother Research Institute.

About the Author

 

Katherine Bowers has been a contributor to Working Mother since 2008, covering issues like workplace wellness programs, sponsorship and advancement, and unusual careers for women. She wrote “Taking Care” in Working Mother’s June/July 2012 issue, focusing on the challenges working mothers face in raising children while caring for relatives with Alzheimer’s disease.

Katherine has also covered health and nutrition for Self, Whole Living and Women’s Health, as well as regularly contributed to the “Healthy Baby” column for Fit Pregnancy magazine. She spent eight years writing for Women’s Wear Daily, where she covered everything from art openings to the world’s biggest company,Walmart.

About the Lead Researcher

Maria Ferris is the principal of Maria S. Ferris Consulting, LLC, which focuses on global diversity and work life strategy. Previously, Maria was the director of IBM’s Global Workforce Diversity Programs. During her 30-year career with IBM, Maria held a variety of staff and management positions within the HR organization in staffing, employee relations, management development, benefits and diversity.

Maria is a former co-chair of the Conference Board’s Work Life Leadership Council and board member for the Institute for Women’s Policy Research, CorporateVoices for Working Families and the Alliance for Work-Life Prog- ress. She received the Ted Childs Work Life Excellence Award in October 2006, awarded by Working Mother Media, and the NAFE Avatar Award in 2009 for her career-long advocacy for women. She has presented extensively at conferences around the world on global issues related to diversity, women and work life and has published numerous scholarly papers on work life topics.

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GE works on things that matter.The best people and the best technologies taking on the toughest challenges. Finding solutions in energy, health and home, transportation and finance. Building, powering, moving and curing the world. Not just imagining. Doing. GE works. For more information, visit the company’s website at ge.com.

 

GE Healthcare provides transformational medical technologies and services that are shaping a new age of patient care. Our broad expertise in medical imaging and information technologies, medical diagnostics, patient monitoring systems, drug discovery, biopharma- ceutical manufacturing technologies, performance improvement and performance solutions services helps our customers deliver better care to more people around the world at a lower cost. In addition, we partner with health care leaders, striving to leverage the global policy change necessary to implement a successful shift to sustainable healthcare systems.

Our “healthymagination” vision for the future invites the world to join us on our journey as we continuously develop innovations focused on reducing costs, increasing access and improving quality around the world. Headquartered in the United Kingdom, GE Healthcare is a unit of General Electric Company (NYSE: GE).Worldwide, GE Healthcare employees are committed to serving health care professionals and their patients in more than 100 coun- tries. For more information about GE Healthcare, visit our web site at gehealthcare.com.

 The Working Mother Research Institute (WMRI), a division of Working Mother Media, is home to the Working Mother 100 Best Companies,Working Mother Best Companies for Multicultural Women,Working Mother Best Compa- nies for Hourly Workers and the National Association for Female Executives’ Top 50 Companies for Executive Women, among other initiatives.WMRI produces insight- ful benchmarking reports as well as important research papers studying work life and the advancement of women and conducts national surveys, such as Women and Alzheimer’s Disease:The Caregiver’s Crisis, to further corporate change nationwide. For more information, visit workingmother.com/research-institute.

 

The Alzheimer’s Association is the world’s leading voluntary health organization in Alzheimer’s care, support and research. Our mission is to eliminate Alzheimer’s disease through the advancement of research; to provide and enhance care and support for all affected; and to reduce the risk of dementia through the promotion of brain health. For more information about the Alzheimer’s Association, visit our website at alz.org or call our 24/7 helpline at 800.272.3900.

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Carol Evans

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Maria S. Ferris

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