July 18, 2013

A Memoir from Inside Alzheimer's Disease

"I am writing this blog to dispel some of the fear and embarrassment that surrounds Alzheimer's."

David Hilfiker is a 68-year-old retired physician who lives in Washington DC with his wife. In September 2012, he was diagnosed with Alzheimer's disease. He talks about the onset of his symptoms and diagnosis, his fears, and his coming to acceptance in a speech that he made at a medical conference: My Alzheimer's.

He also keeps a blog entitled Watching the Lights Go Out which, despite the gloomy title, is actually a very rich journey filled with honesty, love, and hope. Here is his description of his intent:

"This blog is the story of my day-to-day life with this illness and my reflections upon it. We tend to be scared of Alzheimer's or embarrassed by it. We see it as the end of life rather than a phase of life with all its attendant opportunities for growth, learning, and relationships. We see only the suffering and miss the joy. We experience only the disappearing cognitive abilities and ignore the beautiful things that can appear.
I will not sugarcoat my experiences, however. I wish I did not have Alzheimer's and would sacrifice a lot to be rid of it. But that's not one of the possibilities. So I will welcome this period of my life. Paradoxically it has so far been one of the happiest periods in my life."

Having been a doctor, he is an informed observer of his own condition. If you or someone you love suffers from Alzheimer's disease, his observations and thoughts might be helpful and inspirational. Viewing his illness as another phase of life to be experienced is a refreshing approach.

Can Alzheimer's Disease be prevented?
What if you or a loved one are experiencing some cognitive decline as you age? Well, some forgetfulness is par for the course. Our prior post Normal aging or dementia - how can you distinguish? talks about this issue and offers some articles and tools for learning more about both aging and Alzheimer's.

One thing is certain: Don't rely on online diagnostic tests, which are very unreliable. If you are concerned, visit your physician -- early detection can be beneficial - medications may be available to ameliorate symptoms, or there may be an opportunity to participate in clinical trials.Plus, it can be empowering to participate in planning family matters and later care options should the need arise.

Recent studies say that eating healthy and exercising both mind and body are the best preventative measures one can take. Some studies also suggest that keeping cognitively engaged through work and social activities can "help stave off degenerative disease." AARP suggest some best practices to Age Proof Your Brain. We all age so there's nos stopping that. And like it or not, we will all one day die of something -- but how we live until that point and choices that we make can determine the quality of those years.

Caregivers: If you are or know a caregiver you may find this post on Caregiver Resources helpful.


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ESI EAP offers 24-7 access to counselors and a wide variety of support resources for employees and family members who are facing difficult health challenges. We also offer wellness benefits and health risk assessments, including discounts for weight loss programs, exercise and nutrition programs, and stop smoking programs. If you want to learn more about how ESI can provide more employee EAP benefits and more employer services, call us at 800-535-4841.

July 15, 2011

Eldercare takes a toll on the workplace

Mike Haberman of HR Observations has an excellent post on the high toll that eldercare takes on both the employee and the employer, and he cites a recent news report which says that "One in four American adults provides care for an aging parent, a threefold increase since 1994…" He discusses the emotional and financial cost to the employee caretaker, as well as the potential career loss. And on the employer side, costs range from productivity losses and absence to the potential loss of valued employees.

It's a problem that is growing exponentially. According to AARP, 30 million households are currently providing care for an adult over the age of 50 and that number is expected to double over the next 25 years.

As Haberman points out, the caregiving employee shoulders an enormous burden - and caregivers are also a population at risk on virtually every front - caregiving takes a toll on mental and emotional health and physical health. It also takes take a toll on the wallet. A study by the MetLife Mature Market Institute reported an average loss of $566,443 in wage wealth due to the unanticipated consequences of their caregiving responsibilities. In a prior post, we discuss The high cost of caregiving and what employers can do.

Haberman notes the need to educate employees. One practical tool we've found that could be useful in this effort is the AARP Foundation's excellent guide, Prepare to Care: A Planning Guide for Families (PDF). It discusses the importance of making it a priority to work with the elderly loved one and other family members to put together a caregiving plan in advance. Advance planning helps to minimize the emotional and logistical stress of a last minute scramble, to reduce the financial strain, and to ensure that the loved one's wishes are factored in. The guide includes practical information on forming a caregiving team and plan, ways to broach a difficult topic, and checklists of needs, considerations, and necessary information.

Because both eldercare and general caregiving is an issue that so many of our employee and employer members face, we've also put together some excellent Caregiver Resources that might be helpful to share with your employees.

April 18, 2011

Study shows discrimination against low wage caregivers

Despite the U.S. Equal Employment Opportunity Commission's (EEOC) focus on an employer's responsibilities to caregivers, including last year's issuance of Employer Best Practices for Workers With Caregiving Responsibilities, a recent study shows that low wage workers are still facing discrimination. The Center for WorkLife Law has recently issued a report: Poor, Pregnant, and Fired: Caregiver Discrimination Against Low-Wage Workers (PDF). The report is a review of more than 2600 cases brought by low-wage hourly workers. The report notes that most media coverage and attention to the issue has focused almost exclusively on professional women and salaried workers, for whom hours and benefits may afford more flexibility. Authors say that policy efforts need to extend to middle- and low-wage workers.

Employees with low wage, hourly pay are more likely to need more than one job to make ends meet. They are less likely to have benefits such as paid sick days and flexible schedules. Plus, low-wage workers are often employed by smaller employers who are not covered by FMLA's 50+ employee threshold.

The report discusses six discriminatory patterns that emerged:

  • Extreme hostility to pregnancy in low-wage workplaces.
  • A near total lack of flexibility in many low-wage jobs.
  • Low-wage workers treated disrespectfully, or even harassed,at work.
  • Low-wage workers denied their legal rights around caregiving.
  • Hostility to low-income men who play caregiving roles.
  • Harsher treatment of mothers of color than white mothers.

Advice for employers
The report concludes with some advice for various stakeholders. We have reprinted the recommendations for employers below:

For employers, FRD (family responsibilities discrimination) lawsuits expose the need for consistent workplace policies and greater training at all levels of the organization. Front-line supervisors of low-wage workers need to be trained and supervised to prevent caregiver discrimination and harassment and to handle family and medical leave requests effectively. In addition, employers should consider policy changes where feasible to alleviate the most common conflicts for low-wage workers, especially where policies lead to high turnover—and lawsuits. Cases document that even small amounts of flexibility, slight changes to no-fault attendance policies, or allowing minimal adjustments for pregnant workers, could make a difference in keeping experienced employees in their jobs.
Note: Thanks to Workplace Prof Blog for the pointer to this study.

Prior posts on caregiving
The high cost of caregiving: what employers can do
7 blogs that focus on work-life issues
Caregiver resources
Resources for elder caregivers

March 5, 2011

The high cost of caregiving: what employers can do

If you have caregivers in your organization - and there is no doubt but that you do - they are costing your organization an 8% differential in healthcare costs per year over noncaregivers, according to a
study on caregivers conducted by Metlife and the National Alliance for Caregiving. The study also found that "younger caregivers (ages 18 to 39) cost their employers 11% more for health care than non-caregivers, while male caregivers cost an additional 18%. It also found that eldercare may be closely associated with high-risk behaviors like smoking and alcohol consumption. Exacerbating the potential impact to employers is the possibility that these medical conditions may also lead to disability-related absences."

The study encompassed more than 17,000 U.S. employees of a major multi-national manufacturing corporation. Nearly 12% of the participants reported caregiving responsibilities for an elderly person. And contrary to conventional thinking that this is an issue for older workers, younger populations such as employees in the 18-39 group are increasingly assuming caregiver responsibilities.

Caregivers face a number of life stressors that take a toll on their health - and their work performance. Caring.com addresses 5 of the biggest issues that sabotage family caregivers:

  • Lack of privacy - establishing boundaries and relief from 24/7 responsibilities.
  • Sleep deprivation - imperils the caregiver's mental and physical health.
  • Lone-soldier syndrome - failure to have emotional outlets can exacerbate stress.
  • Unpredictability - makes it difficult to make contingency plans.
  • Overwhelming tasks - sometimes the enormity of care demands necessitate nursing home placement, a wrenching decision.

What can employers do?

One of the single biggest things an employer can do is to address the issue and to make resources and support available to caregiving employees. This can be done through the Human Resources department, through a wellness program, or through an EAP, or by bringing an outside agency in to offer seminars and support.

One simple thing an employer can do is to compile and share a list of caregiving resources, both those available locally and online. Recent reports show that a high number of caregivers turn to online resources for peer-to-peer help, both with their own health issues and the health issues of loved ones that they have caregiver responsibilities for. Peer-to-peer programs can go a long way to diminishing the feeling of being alone and can help the caregiver to find and share practical support resources. We've compiled a list of online caregiver resources that might be helpful to your caregiving employees - feel free to share this page within your organization.

For additional ways that employers can support the caregivers in their workplace, here are some resources:

February 6, 2011

7 blogs that focus on work-life issues

The New Old Age - from New York Times, this blog says, "Thanks to the marvels of medical science, our parents are living longer than ever before. Adults over age 80 are the fastest growing segment of the population, and most will spend years dependent on others for the most basic needs. That burden falls to their baby boomer children. In The New Old Age, we explore this unprecedented intergenerational challenge."

Working Parents Blog - This BusinessWeek blog posts about "...issues and day-to-day concerns of working parents, offering up interviews with work/life experts, examinations of relevant research, and their personal accounts of bouncing between separate, sometimes conflicting worlds."

The Working Caregiver - by Susan Avello, the Vice President of Network Development with AgingInfoUSA and a caregiver advocate. She describes the blog as "an everyday guide for working caregivers."

Corporate Voices for Working Families - the blog's sponsoring nonprofit organization describes itself as "the leading national business membership organization representing the private sector voice in the dialogue on public policy issues involving working families...Collectively our 50 partner companies, with annual net revenues of more than $1 trillion, employ more than 4 million individuals throughout all 50 states."

The Juggle - Wall Street Journal sponsored blog that "examines the choices and tradeoffs people make as they juggle work and family. The site provides readers with news, insight and tips on parenting, workplace issues, commuting, caregiving and other issues busy readers with families face. It is also a place for readers to share and compare their own work-and-family experiences and to seek advice and recommendations."

Work and Family Blog - sponsored by the Sloan Work & Family Research Council, this blog focuses on work/life issues, and frequently includes a great roundup of news stories related to work & family issues.

Working Moms Blog - Katherine Reynolds Lewis is an award-winning journalist whose articles on work, family, personal finance, business and politics have appeared in dozens of different regional and national publications. A working Mom herself, Katherine and her husband Brian are the proud parents of three daughters, aged 3, 6, and 17.

November 22, 2010

Caregiver Resources

According to the National Alliance for Caregiving, more than 65 million people, 29% of the U.S. population, provide care for a chronically ill, disabled or aged family member or friend during any given year and spend an average of 20 hours per week providing care for their loved one. That means that about one in every 3 or 4 of your employees has caregiving responsibilities, a significant work-life issue. If you have a good EAP, your employees should be able to access resources and help - along with help for the stress that caregiving adds to their lives. To commemorate National Family Caregivers Month, we are sharing some resources that we've found helpful and encourage you to share these with your employees.

ShirleyBoard is a free resource that gives you the tools to create your ow online community and to link all the people in your network and all those caring for a loved one. You can centrally store all important caregiving information, such as a patient journal, a list of medications, a directory of doctors, and a calendar. It allows you to give access to friends, family and healthcare professionals – and to establish permissions for what information they can and can't see. It allows you to keep an ongoing record, to access resources and tips, and to network with other caregivers.

BenefitsCheckUp - A service from the National Council on Aging. Many older people need help paying for prescription drugs, health care, utilities and other basic needs. Many are eligible for but not receiving benefits from existing federal, state and local programs. There are many public programs available to seniors in need ranging from heating and energy assistance to prescription savings programs to income supplements. BenefitsCheckUp includes more than 2,000 public and private benefits programs from all 50 states and the District of Columbia.

Program of All-inclusive Care for the Elderly (PACE) is centered around the belief that it is better for the well-being of seniors with chronic care needs and their families to be served in the community whenever possible. PACE serves individuals who are age 55 or older, certified by their state to need nursing home care, are able to live safely in the community at the time of enrollment, and live in a PACE service area. Delivering all needed medical and supportive services, the program is able to provide the entire continuum of care and services to seniors with chronic care needs while maintaining their independence in their homes for as long as possible. Care and services include:

  • Adult day care that offers nursing; physical, occupational and recreational therapies; meals; nutritional counseling; social work and personal care
  • Medical care provided by a PACE physician familiar with the history, needs and preferences of each participant
  • Home health care and personal care
  • All necessary prescription drugs
  • Social services
  • Medical specialists such as audiology, dentistry, optometry, podiatry, and speech therapy
  • Respite care
  • Hospital and nursing home care when necessary

Aging Pro - bills itself as the best one-stop destination for a comprehensive set of caregiving tools, resources, community support information and access to professionals in aging on the Web. It is a resource for caregivers, professionals, and people planning their future.

Family Caregiver Alliance - Founded in 1977, FCA was the first community-based nonprofit organization in the country to address the needs of families and friends providing long-term care at home. Long recognized as a pioneer in health services, FCA now offers programs at national, state and local levels to support and sustain caregivers, including the Family Care Navigator with state-by-state help and the National Center on Caregiving, the policy and research center of FCA.

EEOC: Unlawful Disparate Treatment of Workers With Caregiving Responsibilities and Employer Best Practices for Workers with Caregiving Responsibilities

Additional resources:
National Family Caregivers Association
National Association for Homecare and Hospice
Caring for a person with Alzheimer’s disease: Your easy to use guide from the National Institute on Aging
Coping with cancer: For caregivers, family & friends
Miles Away: The Metlife Study of Long-Distance Caregiving
Caregiver depression - symptoms and hope

Prior posts:
Resources for elder caregivers
Employer best practices for caregivers in the workplace
The high cost of caregiving
Caregiver employees are at heightened risk: how employers can help

June 20, 2010

What broke my father's heart

Katy Butler's recent article in the New York Times entitled What Broke My Father's Heart kicks up a variety of issues related to caregiving, healthcare choices, and difficult end-of-life decision making. It is tough reading - a wrenching, sad, and frightening personal account of her father's deterioration and death - which was prolonged by a medical technology that was intended to bolster the quality of life rather than detract from it.

"...Thanks to advanced medical technologies, elderly people now survive repeated health crises that once killed them, and so the “oldest old” have become the nation’s most rapidly growing age group. Nearly a third of Americans over 85 have dementia (a condition whose prevalence rises in direct relationship to longevity). Half need help with at least one practical, life-sustaining activity, like getting dressed or making breakfast. Even though a capable woman was hired to give my dad showers, my 77-year-old mother found herself on duty more than 80 hours a week."
The article raises many questions about medical choices, along with end-of-life issues that few of us want to spend a lot of time thinking about. It offers a window into the weighty emotional environment that many of your employees face in dealing with aging parents or the terminal illness of a loved one. In reading the article, we recognized many of familiar life/death issues that we deal with on our EAP help line.

As an employer, you can provide support resources by way of referrals to EAPs, grief counselors, complex health care consultants, hospices, and local resources for the elderly. Via your wellness program. you can make information available on caregiving, advance directives, living wills, and healthcare proxies. Here's a start:

May 7, 2009

Employer best practices for caregivers in the workplace

Caregiving is a work-life issue that our counselors deal with often - it can be a terrible burden to juggle the responsibilities of a full-time job while caring for an elderly or a disabled family member. There are some family responsibilities that can be scheduled or defered to another time, but caregiving is not one of them. It entails immediacy and urgency, and the weight of the responsibility means that caregivers are a population at risk.

As part of a push to support family-friendly workplaces, The EEOC has recently been focusing on caregiver discrimination and has issued a technical document giving guidance to employers on best practices related to caregiving employees. Melissa Turley of Human Resource Executive notes that although caregivers are not a protected class, "Discriminating against caregivers, however, could result in Title VII, FMLA or ADA claims." She offers a summary of best practices.

Mark Toth at Manpower Employment Blawg also offers a great summary of the EEOC's Caregiver Best Practices. After polling readers, he learned the the number one employment law headache was identified as medical leave. In response to this, he is developing a series of cheat sheets on various laws relating to medical leave. This week, he issued an FMLA cheat sheet.

Additional Resources
State-by-state Family Care Navigator
The Family Caregiver Alliance
Caregiver resources
The high cost of caregiving
Caregiving employees at heightened risk: how employers can help

April 30, 2008

The high cost of caregiving

In 2006, the MetLife Mature Market Institute and the National Alliance for Caregiving coauthored a study entitled The MetLife Caregiving Cost Study: Productivity Losses to U.S. Business (PDF), which estimates that the average cost to an employer per 'employee caregiver' is $2,110 per year. The total estimated cost to employers for all full-time, employed caregivers is $33.6 billion. The study puts the number of full-time employed caregivers at close to 16 million, and growing.

The costs in terms of lost productivity are associated with:

  • Absenteeism and partial absenteeism (Coming in late or leaving early)
  • Workday interruptions
  • Crisis in care
  • Supervisory time
  • Unpaid leave
  • Reduction in hours from full-time to part-time
The study defines a caregiver as someone caring for a person over the age of 18. Typically, the person being cared for is over 50. The chances are very high that you have caregivers in your organization right now, whether you know it or not.

The term caregiving is a relatively recent one - it's not even in my spell checker - but the concept is certainly not new. Since the beginning of time, family members have been taking care of their sick or elderly relatives. What is new is the number of baby boomers in the workforce who have elderly parents, spouses, or children with significant health issues.

I speak from personal experience since I have dealt with elderly parents as well as with a child with a significant health issue health while working full-time. I know the amount of time and energy these problems can absorb. Even when you are at your desk, it's often difficult to focus on your job when people that you love are sick. At the time when these family health issues were on the table for me, I was unaware that my employer even had an EAP or that an EAP might be able to help me with support and services. At the time, I was under the misperception that EAPs are only for substance abuse or mental health issues. Many of your employees may be missing valuable support if they are also under this misperception.

Your EAP can help your employees with these caregiving issues. We have invested significant resources in training our counselors and staff to deal with the myriad issues that are part and parcel of caregiving. In fact, we added a specific Caregiver Resource benefit in response to the many member calls we noted around caregiving issues, from resource referrals to help dealing with all the associated emotions.

A benefit is only as beneficial as its utilization. Make sure any caregivers in your organization are aware of your EAP and publicize specifics about the type of support and services they can obtain from your EAP. Help and support services can be invaluable to your caregiving employees and can also help minimize the effects on your organization's productivity.

July 27, 2007

Caregiver employees are at heightened risk: how employers can help

We recently came upon a great LA Times article by Melissa Healy on the topic of caregivers
and the high toll they pay for the role they play
in supporting family members. This is a topic that interests us greatly—our EAP deals with an increasing number of workers who are dealing with the stress or strain of caring for an ill, elderly, or special needs family member. According to the article, about one in every six people is a caregiver and as the Baby Boomers advance in age, that number is expected to increase. Add to that the numbers who will be caring for veterans of Iraq and Afghanistan wars, many profoundly injured either physically or mentally. The scope of the caregiving issue is significant enough that it prompted the EEOC to recently issue new caregiver guidelines for employers. Many caregivers are elderly themselves—about 30% fall in this category. Many others are sandwiched between caring for elderly relatives and providing child care, a double burden. Most caregivers are employed and the weight of their responsibilities takes a high toll on many aspects of their lives, including their work. Caregiving is an issue employers need to tackle head-on—according to a survey by The MetLife Mature Market Institute, which tracks aging, retirement and elder-care issues for the Metropolitan Life Insurance Co., the cost of caregivers in the workplace may be as high as $33.6 billion a year in missed days, early departures, and on-the-job distractions. The heavy responsibilities of caring for ill or elderly family members also increases the chances that the caregivers themselves will experience financial, physical, and emotional problems. Many are forced to put their own career goals on hold or work reduced hours, and the health risks associated with caregiving are high:

"A 2003 study found that family members caring for those with dementia suffered suppressed levels of immunity for three years following their stint of caregiving, raising their risk of developing a chronic disease themselves. Other surveys have found that compared with the general population, caregivers—especially those with intensive caregiving demands and those already in fair or poor health—are less likely than their noncaregiving peers to attend to their own healthcare needs, less likely to exercise or see their doctor regularly and more likely to eat poorly and drink alcohol excessively."

How employers can help
Many companies are experimenting with innovative approaches to supporting caregivers. Many large organizations, such as IBM and Raytheon, are offering caregiver wellness programs focused on teaching caregivers how to effectively cope with their responsibilities and maintain their own physical and mental health. Here are some of our suggestion for things that employers can do to support the caregivers in their workplace:

  • Assess the issue in your work force. Take a survey to learn the extent of the caregiving responsibilities in your workplace so that you understand the pressure points and can plan the most appropriate response for your employees.
  • Train managers and supervisors to be sensitive to and alert for workers with caregiving responsibilities and to direct these employees to appropriate support resources, such as an EAP.
  • Learn about and publicize local caregiving resources that can provide practical assistance, such as meals on wheels, transportation services and and adult day care. Publicize these resources in your organization's newsletter or intranet.
  • Examine your organization's policies on flexible work hours and work-at-home options. Consider offering your employees more options on when, where, and how they accomplish their work responsibilities.
  • Consider expanding work/life benefits. If you don't have an EAP that offers work/life and caregiving resources, consider adding one. Research benefit options, such as access to temporary emergency dependent care or paid leave for caregivers that goes beyond FMLA standards, or voluntary time banks where other workers can donate unused sick or vacation time to to caregiving or ill co-workers.

June 1, 2007

EEOC issues guidance on caregiver discrimination

Last week, the U.S. Equal Employment Opportunity Commission (EEOC) issued new guidance for employers on Unlawful Disparate Treatment of Workers With Caregiving Responsibilities. Some employers and legal observers question whether this represents a step in the direction of increased regulation in the area of family responsibilities discrimination.

EEOC guidance notes that while laws prohibiting discrimination do not specifically extend to caregivers, there may be circumstances in which discrimination against caregivers could be considered unlawful disparate treatment under Title VII of the Civil Rights Act of 1964, the Americans with Disabilities Act of 1990, or the Family and Medical Leave Act. There may also be state or local laws that extend protection to caretakers under various provisions.

In issuing the guidance, the EEOC cites the demographic shift in the work force over the last four decades since the Civil Rights law was enacted, most notably the increase in working women who continue to shoulder the bulk of caregiving responsibilities. Caregiving responsibilities are defined as including care for school-age children, care for the disabled, and, increasingly with the aging of the Baby Boomers, care for aging parents and relatives.

EEOC guidance encompasses the following areas:

  • Sex-based disparate treatment of female caregivers
  • Pregnancy discrimination
  • Discrimination against male caregivers
  • Discrimination against women of color
  • Unlawful caregiver stereotyping under the Americans with Disabilities Act
  • Hostile work environments
  • Retaliation

Tresa Baldas of Law.com discusses the EEOC guidance and the issue of family responsibility discrimination (FRD), which is "a legal and social science term that experts have coined for the growing phenomenon of employees suing employers for discriminating against them because of their caregiving responsibilities at home." She notes that because federal laws do not specifically prohibit such discrimination, employees with grievances file suit under a variety of existing federal and state laws:

"During the past decade, the courts have seen a significant increase in FRD claims, from 97 cases in 1996 to 481 in 2005, according to a University of California Hastings College of the Law study. And FRD cases—won by plaintiffs more than 50 percent of the time, according to the study —have yielded several multimillion-dollar verdicts and settlements."

The article, well worth reading, discusses the growing pressure on employers to accommodate employees with family obligations while balancing the demands of specific jobs. Baldas reports that EEOC officials deny that the guidance is an attempt to establish a new class of discrimination claims or to bolster plaintiffs' lawsuits: " 'We're not creating any new category under the EEOC laws ... . We're looking to the extent that the existing laws apply to work-life balance issues,' said EEOC vice chairwoman Leslie Silverman."

One resource in this area is the The Center for Work Life Law from Hastings College of the Law, University of CA. Their site offers resources for preventing family responsibilities discrimination, including court decisions and a model employer policy for discrimination prevention. The Center also has an affiliated WorkLife law Blog. (We thank Richard Bales of Workplace Prof Blog for the pointer - another site worth visiting for this and a multitude of other employment law-related topics. )

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