A Portrait of Caregivers

The Changing Face of Caregiving

How longevity and emerging social norms are altering the landscape of retirement and aging

by Hector De La Torre

Mr. De La Torre is the Executive Director of the Transamerica Center for Health Studies, a nonprofit focused on helping consumers and businesses navigate the health care landscape. Visit
www.transamericainstitute.org

Former first lady Rosalynn Carter famously said, “There are only four kinds of people in the world – those who have been caregivers, those who are caregivers, those who will be caregivers and those who will need caregivers.”

This quote rings true – at some point in our lives, most of us will act as a caregiver for a loved one. According to the National Alliance on Caregivers, approximately 34.2 million Americans have provided unpaid care to an adult age 50 or older in the last 12 months. As common as it is, caregiving is largely undiscussed by our society, media, and lawmakers. To better understand caregiving in America, Transamerica Institute® released The Many Faces of Caregivers: A Close-Up Look at Caregiving and its Impacts, a report on the status of non-professional (or family/friend) caregivers.

Transamerica Institute’s survey of more than 3,000 non-professional caregivers examined their duties and the impact caregiving has on their lives. It provides demographic portraits of caregivers by employment status, gender, generation, household income, ethnicity, whether they are the primary caregiver and whether they became a caregiver voluntarily. The study looks at who is providing care, how it affects their career, health, financial situation and what resources caregivers need to juggle their commitments.

The survey found that nine out of 10 non-professional family caregivers feel it’s important to provide a good quality of life for the person they care for, they like helping, and enjoy spending time with their care recipient. However, many caregivers are providing care at their own risk. Fifty-five percent say that their own health is taking a back seat to the health of their care recipient and 69 percent gave little or no consideration to their own financial situation when deciding to become a caregiver.

A Portrait of Caregivers

Caregivers come from all walks of life and are spread across every demographic group across the country. The caregiving population includes men and women of all ages, ethnicities, income level and employment status. Amid this diversity, caregivers share much in common in terms of their motivations for being a caregiver and their duties:

  • Fifty-three percent are women and 47 percent are men;
  • Thirty-four percent are Millennials (born 1979-2000), 22 percent are Generation X (born 1965-1978), 37 percent are Baby Boomers (born 1946-1964), and 7 percent are Matures (born before 1946);
  • Eighteen percent had a household income (HHI) of less than $25,000 in 2016, 17 percent had an HHI between $25,000 and $49,000, 30 percent had an HHI between $50,000 and $99,000, 28 percent had an HHI of $100,000 or more, and 7 percent declined to answer.
  • More than half of caregivers (52 percent) are employed either full-time (39 percent) or part-time (13 percent). Among those currently employed or who have been employed during their time as a caregiver, three in four (76 percent) have made some type of adjustment to their employment as a result of their caregiving duties, ranging from using vacation and sick days (30 percent), to taking on fewer hours or responsibilities (26 percent), to quitting their jobs or retiring (14 percent).

The Health Implications of Caregiving

While juggling a job and other responsibilities, some caregivers may be jeopardizing their own health. While three out of four caregivers say they are in excellent or good health (74 percent), approximately one in six caregivers (17 percent) indicate their general health has gotten worse/declined since becoming a caregiver and to make matters worse, 55 percent of caregivers say their caregiving duties leave them physically or emotionally exhausted, while 44 percent say their duties leave them feeling completely overwhelmed.

Often times, caregivers prioritize the health and well-being of their care recipient over their own health, neglecting their symptoms of exhaustion in order to care for their loved one. In the long-term, it can increase their risk of depression and chronic illness. To prevent these risks early on, it is important to recognize symptoms of physical, emotional and mental burnout and find ways to address them.

The Financial Implications of Caregiving

Caregiving can be a full-time job (or an additional full-time job) for many, often demanding time, energy, and money. The survey found that 36 percent of caregivers spend 100 hours or more per month providing care, with a median of 50 hours spent per month. These unpaid hours of caregiving duties can put a strain on finances, and caregivers spend a median of $150 per month in out-of-pocket expenses for their care recipient. Only 56 percent of caregivers describe their financial well-being as excellent or good, a survey finding which varies dramatically by a caregiver’s HHI. For example, 44 percent of caregivers with an HHI of less than $25,000 describe their financial well-being as poor – and of that group, 32 percent say that their financial situation has worsened since becoming a caregiver.

One measure of a caregiver’s long-term financial security is their total household retirement savings. Many caregivers from all demographic backgrounds are at risk of not achieving a financially secure retirement. In the survey’s findings, 52 percent of caregivers with an HHI of less than $25,000 say that they have no retirement savings, and overall, almost one in five caregivers (18 percent) say that they have taken a loan, hardship withdrawal and/or early withdrawal from their retirement accounts as a result of becoming a caregiver.

Caregiving can be a full-time job (or an additional full-time job) for many, often demanding time, energy, and money... 36 percent of caregivers spend 100 hours or more per month providing care

What Caregivers Need

Caregivers want and need help with their caregiving duties, ranging from a desire for more information to financial assistance. In fact, 88 percent of caregivers would like more information on one or more topics related to caregiving.

  • One-third of caregivers would like more information about free support services offered by nonprofits and the government. Caregivers would also like more information about financial assistance from nonprofits and the government, as well as long-term care and legal documentation.
  • More than one-third of caregivers would like information about stress management (38 percent), tips for coping with challenges (37 percent), and government benefits available for caregivers (37 percent).
  • In order to ease the demands of their caregiving role, caregivers often wish they could have more help and the ability to make adjustments to their personal lives and routines. Nineteen percent of caregivers wish for increased financial support (e.g., more money, less debt, or payment for their services) and additional help/support with their caregiver role.

Another topic requiring additional information for caregivers is legal documents needed to help manage medical treatment and finances. According to a survey conducted by the American Association of Retired Persons (AARP), more than 90 percent of people think that it is important to have conversations about end-of-life care with their loved ones, yet fewer than 30 percent have done so. The Transamerica Institute Survey of Caregivers found that only 51 percent of caregivers have a power of attorney or medical proxy in place. Furthermore, about one quarter of caregivers have discussed legal and medical documents with their care recipient, but have not written them down.

In most cases, caregiving is not planned, but rather the need arises quickly and unexpectedly from an illness, injury, or from the onset of dementia. Having certain documents in place prior to the need for caregiving can aid the caregiver with the medical and financial aspects so they can spend more time providing comfort and companionship to the recipient.
Granted, discussing these documents is the first challenge. Knowing their loved one’s wishes regarding where the care recipient will live, what type of medical care they will accept or decline, and who they wish to designate to make medical and financial decisions on their behalf will reduce stress and confusion when the need for care arises.

Legal documents such as a privacy waiver (HIPPA), advance directive, medical proxy, and power of attorney are available for download on websites such as the American Bar Association, the American Medical Association, or individual states’ Bar and Medical Associations.

Caregivers play a vital role in our society by providing support for family, friends and loved ones. It is a labor of love that mostly comes without a paycheck. As a caregiver, many are putting their own health and long-term financial security at risk. From a societal perspective, awareness of the issues and risks that caregivers face should be more prevalent in order to identify meaningful solutions that can help them better manage their duties to assist their care recipients and themselves. ◊

 

 

 

About Transamerica Institute®
Transamerica Institute is a nonprofit, private foundation dedicated to identifying, researching and educating the public about retirement, health coverage and better outcomes in personal health and wellness, and other relevant issues facing Americans today. It comprises two research centers: Transamerica Center for Retirement Studies® (TCRS) and Transamerica Center for Health Studies® (TCHS). The Institute is funded by contributions from Transamerica Life Insurance Company and its affiliates and may receive funds from unaffiliated third parties. The Institute and its representatives cannot give ERISA, tax, investment or legal advice. This material is provided for informational purposes only and should not be construed as ERISA, tax, investment or legal advice. Interested parties must consult and rely solely upon their own independent advisors regarding their particular situation and the concepts presented here. For more information, please refer to www.transamericainstitute.org
About the Inaugural Caregivers Survey
This survey was conducted online in the U.S. by Harris Poll on behalf of Transamerica Institute between March 13 and April 21, 2017 among 3,074 caregivers. Respondents met the following criteria: U.S. residents, age 18 or older, and provided care for a relative or friend with an episodic, permanent, or temporary condition who needs help taking care of themselves (adult or child) at any time in the past 12 months. Results were weighted by race/ethnic groups [Hispanic, Black/African American (not Hispanic), Asian (not Hispanic), All Other (not Hispanic)] to each group’s U.S. Census Bureau population distributions of adults age 18+ for gender, education, household income, household size, marital status, employment status; and to adjust for attitudinal and behavioral differences between those who are online versus those who are not, those who join online panels versus those who do not, and those who responded to this survey versus those who did not.