A Patient Advocate's View

Caregiver Support-Advice for Moving the Talk to Action

By Carol Marak

April 06, 2016.

It’s disheartening to know that the Family and Medical Leave Act have not improved much over the years. Although no comprehensive policy or program to support family caregivers exists today, the pace of dialogue and interest has quickened in the past five years to include them in the deliveries of care. Many companies are expanding leave for maternity and paternity leave. NetFlix gives staff a year! However, moving the talk to action for family caregivers needs a shove.

It’s a universal issue, and I remember the days of helping mom and dad from a distance while holding down a full-time job. For me, family caregiving began in 1999, when mom’s health started to fail. At the time, 1,200 miles lay between us but decided to shorten the distance and moved closer.

Even so, my job kept us apart. My efforts to work a solution with the HR department fell on deaf ears. Back then, I thought she was cold-hearted but now know that her hands were tied. Unfortunately, the same grief rests on families today.

Lynn Friss, a senior strategic policy adviser for the AARP Public Policy Institute, says “Despite some recent policy advances at the federal and state levels, the pace of change must accelerate to recognize adequately and explicitly support caregiving families.” In Lynn’s article, she concludes that their requirements demand solutions, or they risk burnout from extended distress. Friss believes that working caregivers could prevent burnout by providing information, better care coordination, support, and training.

Our country must adapt to the complex needs of caregiving families. We must find ways to address and resolve the significant issues before we lose the “family assistance” to ill health caused by exhaustion. Since our country’s long-term services and supports (LTSS) systems are not set up to meet the needs of family caregivers, how do we help them?

We need real world answers and help. Therefore, I asked the Aging Council Members for their guidance. Since they work in the field and deal with families and older adults every day, no one is more suitable for the query,

“What emerging programs and policies do you see changing to include the family caregivers—and what remains a challenge?”

Care Coordination

It is still a major problem for working caregivers to coordinate for a loved one’s needs, often leading to leaving jobs or cutting back on hours, giving up promotions, etc. We need to examine the cost-benefit as employers and society to paying for some assistance and offering various benefits versus losing valuable workers, time, etc. Alex Chamberlain, Easy Living FL.

Financial Concerns

Caregivers lose large chunks of wealth due to opportunity and actual costs of giving care. Companies are extending EAPs to help and modifying benefits to be more inclusive, but this needs to be addressed on a wider level as it not only impacts individuals but our overall economy. Shannon Martin, Aging Wisely.

If enacted, the Social Security Caregiving Act would provide modest retirement compensation to those who have left the workforce or reduced their hours to care for a loved one, thereby reducing the amount they are paying into Social Security. The credit would ensure the caregiver would not be losing the benefits they would receive upon retirement, presenting more flexibility for these caregivers. Evan Farr, Farr Law Firm.

Family Support

One organization to check is ReAct, a coalition of companies that embrace family caregivers in the workplace. They have benchmark reports that provide best practices. Organizations must realize that great customer experience starts with a great employee experience and with 6 of 10 people in the workforce are family caregivers; taking care of them also helps your business. Anthony Cirillo, The Aging Experience.

Family caregivers are exhausted. Because many caregivers have to leave the workforce to care for aging family members, there are no additional monies left to pay for respite care. Caregivers who DO exit the workforce go without funds, friends and in many cases, the ability to find employment in their area of expertise. Shelley Webb, Transitional Caregiver.

In the realm of private insurance we talk of absenteeism and presenteeism (“there, but not there”) since forecasts call for a “caregiving workforce” as the new normal. Private LTCI– with all its attendant benefits– is expected to make a major push into the worksite in the next few years. In Washington, a trio of public policy advocates has called for greater support for family caregivers. Stephen Forman, CLTC, Long Term Care Associates, Inc.

Employer Options and Strategies

Flexible schedules in the workplace are a life saver for both the employer and employee. Not all positions/companies have the ability to make this work, Scot Cheben, Caregiving Answers. A Metlife study found that:

  • 33% of working women decreased work hours
  • 29% passed up a job promotion, training or assignment
  • 22% took a leave of absence
  • 20% switched from full-time to part-time employment
  • 16% quit their jobs

Caryn Isaacs, Get Health Help, offers the following examples of worthy programs and resources for family caregivers:

Under FMLA, children of aging parents may take up to 12 weeks of unpaid leave annually to care for parents who are experiencing health problems. Unfortunately, many individuals do not meet the FMLA requirements, and even if they do, long-term care needs often exceed the allotted 12 weeks. Many people struggle due to the reduced or absent paychecks when taking leave under FMLA.  Ben Mandelbaum, Senior-Planning.

America is waking up to the fact that family caregiving is costly and pain-FULL. A price tag exists for loss of work and increased healthcare costs for caregivers. Link that to the growing population and you have the perfect storm. Employers with EAPs reap “presenteeism”, cost-savings, and show support and value to employees. More can be done on state level to follow the federal FMLA. Change is driven by pocketbook pain: the government’s, the employer, or Insurance. Nancy Ruffner, NavigateNC.

About Carol Marak 

Carol Marak is a senior and family caregiver advocate. She is the editor for and writes for many online publications offering information on current aging trends and help. She helped publish America has a Major Misconception on Aging, a report to help consumers plan for long-term care.

Carol Marak’s background includes caregiving for her parents and has first-hand experience in helping her father who lived with Alzheimer’s disease. She understands the dilemma family members encounter when caring for a relative and working a full-time job.

Ms. Marak has published more than 200 professional articles for health care websites, blogs and newsletters. She became a full-time freelancer in 2006 and has been interviewed by reporters.

Though senior care is her area of expertise and greatest passion, Carol has written and edited branded content, articles, company profiles and product brochures. Carol has a BS in Behavioral Sciences and Criminology from Sam Houston State University in Texas.

April 7, 2016 - Posted by | Uncategorized

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