Recognizing Family Caregivers: November is National Family Caregivers Month

November is National Family Caregivers Month, a time to recognize and honor family caregivers in America, as proclaimed in a Presidential Proclamation signed by President Barack Obama on November 1, 2011.

November has been set aside as a time to recognize and appreciate family caregivers in the United States since 1994, when first promoted by the National Family Caregivers Association, a non-profit organization with the stated mission of educating, supporting, and empowering family caregivers, and advocating for them. President Clinton signed the first presidential proclamation of November as National Family Caregivers Month in 1997.

Presidential Proclamation

Following is the Presidential Proclamation signed by President Barack Obama on November 1, 2011:

NATIONAL FAMILY CAREGIVERS MONTH, 2011

BY THE PRESIDENT OF THE UNITED STATES OF AMERICA

A PROCLAMATION

Across our country, millions of family members, neighbors, and friends provide care and support for their loved ones during times of need.  With profound compassion and selflessness, these caregivers sustain American men, women, and children at their most vulnerable moments, and through their devoted acts, they exemplify the best of the American spirit.  During National Family Caregivers Month, we pay tribute to the individuals throughout America who ensure the health and well-being of their relatives and loved ones.

Many of our Nation’s family caregivers assist seniors and people with disabilities to help improve their quality of life.  Their efforts help deliver short term comfort and security, facilitate social engagement, and help individuals stay in their homes and communities as long as possible.  This heroic work is often done while caregivers balance other commitments to their families, jobs, and communities.  As these remarkable individuals put their own lives on hold to tend to their family members, it is our responsibility to ensure they do not have to do it alone.

To ease the emotional and financial burdens that can accompany caregiving, my Administration has striven to support family caregivers for the crucial role they perform.  Vice President Joe Biden’s Middle Class Task Force has focused on the importance or investing in respite care, counseling, and training for individuals who serve aging Americans.  These initiatives would give family caregivers a leg up as they continue to support their aging loved ones.

One of our Nation’s greatest responsibilities is to ensure our veterans, their families, and their caregivers receive lasting and comprehensive support.  Last year, I signed the Caregivers and Veterans Omnibus Health Services Act, which helps fulfill this obligation by extending additional assistance to family members who care for severely wounded veterans from Iraq and Afghanistan.  Our military caregivers exemplify the heroism found not only on the fields of battle, but also in the hearts of those who tend to our wounded warriors when they come home.

As we observe National Family Caregivers Month, we honor the tireless compassion of Americans who heal, comfort, and support our injured, our elders, and people with disabilities.  This month and throughout the year, let the quiet perseverance of our family caregivers remind us of the decency and kindness to which we can all aspire.

NOW, THEREFORE, I, BARACK OBAMA, President of the United States of America, by virtue of the authority vested in me by the Constitution and the laws of the United States, do hereby proclaim November 2011 as National Family Caregivers Month.  I encourage all Americans to pay tribute to those who provide for the health and well-being of their family members, friends, and neighbors.

IN WITNESS WHEREOF, I have hereunto set my hand this first day of November, in the year of our Lord two thousand eleven, and of the Independence of the United States of America the two hundred and thirty-sixth.

BARACK OBAMA

Who are the Family Caregivers and What are their Contributions and Needs?

According to the National Family Caregivers Association (NFCA), more than 65 million Americans serve as family caregivers, fulfilling a vital role in the daily care of elderly or disabled family members and children. As pointed out by the NFCA, “No one else is in a better position to ensure continuity of care,” than family caregivers. “Family caregivers are the most familiar with their care recipients’ medicine regimen; they are the most knowledgeable about the treatment regimen; and they understand best the dietary and exercise regimen.”

Economic Contributions of Family Caregivers:

According to a report by the AARP Public Policy Institute, “Valuing the Invaluable: The Growing Contributions and Costs of Family Caregiving, 2011 Update, “Family caregivers provided the equivalent of $450 billion worth of care to their adult parents and other loved ones in 2009, an amount that makes caregivers one of the largest and most overlooked pillars of the U.S. health care system.”

According to a Fact Sheet accompanying this AARP report:

  • “In 2009, about 42.1 million family caregivers in the United States provided care to an adult with limitations in daily activities at any given point in time, and about 61.6 million provided care at some time during the year. The estimated economic value of their unpaid contributions was approximately $450 billion in 2009, up from an estimated $375 billion in 2007.
  • The estimated $450 billion in unpaid contributions by family caregivers is:
  • ■ More than total Medicaid spending in
    2009, including both federal and state
    contributions for both health care and
    LTSS ($361 billion)

    ■ As much as the total sales of the world’s
    largest companies, including Wal-Mart
    ($408 billion in 2009, the most of any
    company) and the three largest publicly
    held auto companies combined (Toyota,
    Ford, Daimler: total $439 billion)

    ■ Approaching total 2009 expenditures
    for the Medicare program
    ($509 billion)

    ■ Almost $1,500 for every person in the
    United States (307 million people as of
    July 1, 2009)

    ■ About 3.2 percent of the 2009 U.S.
    gross domestic product ($14.1 trillion)

    ■ Almost as much as the 2009 gross
    domestic product of Belgium, the
    20th largest economy in the world
    ($471 billion)”

Statistics: Who are the Family Caregivers & What are Their Burdens and Needs?

Here are some additional statistics about family caregivers and the burden they carry, from the Caregiving in the U.S. (2009) survey, prepared by AARP and the National Alliance of Caregiving:

Who are the Caregivers & Who Do They Care For:
  • An estimated 65.7 million people in the U.S. have served as unpaid family caregivers to an adult or a child in the past 12 months;
  • An estimated 36.5% of U.S. households include at least one person who has served as an unpaid family caregiver within the last 12 months;
  • Some 66% of Caregivers are female;
  • On average, family caregivers were 49.2 years old in the 2009 survey, about three years older on average than in a 2004 survey, and seven of ten take care of someone 50 years of age or older, with the average age of care recipients being 69.3 years old, also about three years older than in the 2004 survey;
  • About 86% of caregivers provide care for a relative, and 36% take care of a parent
  • More than One-third (34%) of caregivers care for two or more people;
  • On average, family caregivers provide care for 4.6 years, with 31% providing care for a loved one for five or more years;
  • The most prevalent health conditions afflicting the care recipients, as reported by the family caregivers, were: old age generally (12%), Alzheimer’s or dementia (12% — up from 6% in the 2004 survey), mental/ emotional illness (7%), cancer (7%), heart disease (5%) and stroke (5%).
Caregiving Activities and the Stress and Burden of Care:
  • On average, caregivers work 20.4 hours per week providing care, with 13% providing care for more than 40 hours per week;
  • Family caregivers who live with their care recipient, provide an average of 39.3 hours of care per week;
  • Women who are family caregivers provide an average of 21.9 hours of care per week, while men who are family caregivers provide an average of 17.4 hours of care per week;
  • A majority (56%) of family caregivers help their loved one with at least one Activity of Daily Living (ADL), such as helping the care recipient to get in and out of beds and chairs (40%), helping the care recipient get dressed (32%), assistance with bathing or showing (26%), toileting (24%), help with incontinence (18%), or help feeding their loved one (19%);
  • All of these activities add up to a burden of care that is high for 32% of caregivers, moderate for 19%, and relatively low for 46% of family caregivers, as self-reported;
  • Seventeen percent of family caregivers report fair or poor health, as opposed to 13% of the adult population in general;
  • Almost one-third (31%) of caregivers consider their caregiving situation to be emotionally stressful, rating their stress burden as 4 or 5 on a 5-point scale, and women are more likely than men to feel high stress (35% vs. 25%);
Impact of Caregiving on Work:
  • Over seven in ten caregivers (73%) were employed outside of their caregiving situation at some time when they were caregiving;
  • Of the employed caregivers, fully 66% report having gone in late, left early, or taken time off during the day to deal with caregiving issues;
  • One in five (20%) found it necessary to take a leave of absence from their work;
Need for Information and Resources for Family Caregivers:
  • One in five family caregivers (19%) say they have obtained formal caregiver training, but according to the AARP survey, “caregivers are hungry for more help or information;”
  • More than three-fourth of family caregivers (78%), feel they need more help or information about at least one of 14 specific topics related to caregiving, and 83% of caregivers in high-burden situations expressed this need for more help or information;
  • The topics on which caregivers expressed the most need for help or information included:
    • Keeping their loved one safe at home (37%);
    • Managing their own stress (34%);
    • Easy activities to do with their care recipient (34%); and
    • Finding time for themselves (32%);
  • The demand for caregiving information has increased over the past five years, with 78% of caregivers expressing this demand in 2009, compared to 67% in 2004, with noticeable increases in the numbers who expressed a need for information on caring for a loved one at home (36% vs. 30%), choosing a home care agency (24% vs. 13%), choosing an assisted living facility (19% vs. 13%) and choosing a nursing home (17% vs. 8%);
  • However, in the 2009 survey, fewer caregivers expressed desire for information about finding time for themselves (30% in 2009 vs. 35% in 2004), except that the need for such information did not decline among caregivers who live with the care recipient;
  • As to where family caregivers look first for information, 36% said they would turn first to a health or caregiving provider, such as a doctor (22%), nurse of other health professional (11%), or hospital; followed by 25% who said they would turn to the internet; 20% who would turn to family, friends, or other caregivers; 12% who turn to Aging or disease-specific organizations; and only 7% to government programs, and 3% to books, magazines or the library;
  • Over half of all family caregivers (53%) say they have used the Internet in the past year to find caregiving information, however use of the internet increases quite dramatically with income and certain other demographics – with 66% of those with incomes over $100,000 using the internet while only 36% of those with incomes less than $30,000 report using this resource;
  • Of those who search for information on the internet, 78% looked for information about their loved one’s condition; 58% sought information about caregiving services or resources; 36% looked for information about doctors or health professionals, 34% about care facilities, 26% about learning how to do caregiving tasks, and only 13% looked for support for themselves as caregivers;
What Other Support/ Resources Do Family Caregivers Seek & Use?
  • In the 2009 AARP/ NAC Survey on family caregivers, 45% of the family caregivers surveyed said they have used some sort of technology in the care of their loved one — including electronic organizers or calendars (24%), an emergency response system like Lifeline (12%), a sensor that detects problems in the home (9%), and a website or computer software to keep track of personal health records (7%);
  • Of six potential national policies or programs that could be offered to support and help caregivers, the most popular was a caregiver tax credit of $3,000. Here are the percentages of caregivers who said they would find each of the proposed programs most or “next most” helpful:
    • 56% – a caregiver tax credit of $3,000 (with 62% of those with incomes over $100,000 choosing this alternative);
    • 29% – A voucher program where your relative could pay you minimum wage for at least some of the hours you spend caregiving (with 42% of those with income under $30,000 choosing this program, as opposed to only 17% of those with incomes over $100,000);
    • 26% – Respite services, where someone would take care of your loved one to give you a break;
    • 21% – An outside service to provide transportation for your relative;
    • 18% – An assessment of your capabilities and needs to connect you with needed services;
    • 15% – A partially paid leave of absence from your work for 6 weeks.

More information on the demographics, consumer actions, media usage, lifestyle and psychographics of typical U.S. family caregivers — who are predominantly members of the Baby Boom generation — has been assembled in a 2001 report, “50 and Over: What’s Next?” sponsored by AARP and prepared by Ad Age, as a guide to marketing to Baby Boomers.

Federal Programs to Help Caregivers

Recognizing the crucial role played by family caregivers in the care and health of Americans, the U.S. Administration on Aging (AoA), part of the U.S. Department of Health & Human Services in 2001 established the National Family Caregiver Support Program, providing financial assistance and support to States and local governments, along with federally established local Area Agencies On Aging, that has allowed the establishment of programs and resources supporting family caregivers.

As part of its National Family Caregiver Support Program, the AoA provides links to a multitude of useful information and resources for family caregivers provided by the Federal Government.

Links to additional government resources for family caregivers are found on USA.gov, the official website of the U.S. government.

Conclusion

Clearly, the burden of family caregiving is heavy and widespread, and the value and significance of the contributions that family caregivers make to our national health and well-being is huge and growing as our population ages.

This November, National Family Caregivers Month, is a time to focus on who the family caregivers among us are, to understand better what they need for help and support, and to honor them and develop further programs and resources to support them and the enormous contributions they make.

More Information

See a list of Caregiver Resources provided by the Federal Government, at USA.gov.

See also HelpingYouCare™ resource pages on

The Expanding Role of Family Caregivers

_____________

Copyright © 2011 Care-Help LLC, publisher of HelpingYouCare™.

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