caregiving

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Featured Dr. Joanne Lynn

About the Family Caregiver Platform Project

The Family Caregiver Platform Project (FCPP) works to get caregiving issues included in as many state party platforms as possible.

The FCPP is a national collaborative effort between major organizations. Together with its national partners, the FCPP encourages nonpartisan grassroots efforts to educate and motivate policymakers to improve state and federal support for family caregivers and older adults. The FCPP works with individual volunteers and organizations to raise awareness of caregiving issues. It doesn’t matter which party you belong to! We care about the issues, not the parties themselves.

During the 2016 political season, many state parties revised their platforms. In 2016 our volunteers made 29 language submissions in 22 states. Language was officially adopted in eight state party platforms, one state party resolution, and two state bipartisan legislative resolutions. Moreover, both Democrats and Republicans included language in their 2016 National Platforms affirming the importance of family caregiving.

During 2017 and 2018, volunteers continued to work at the local level to encourage discussion of caregiving issues in their political setting. You can download customizable platform language templates to minimize the effort to prepare submissions to local groups, caucus meetings, city councils, and legislative committees.

You can send the FCPP an email message at info@caregivercorps.org.

In 2016, the FCPP was supported by a grant from the Lawrence & Rebecca Stern Family Foundation to The Center for Elder Care and Advanced Illness (CECAI) at Altarum Institute, which continues to support the effort on a pro bono basis. The project was also made possible through the Health and Aging Policy Fellows Program, through the generous support of The Atlantic Philanthropies and the John A. Hartford Foundation.

Why Political Platforms Matter

Adopting better policies in state party platforms can be a first step in creating a positive policy climate nationally. A platform is a declaration of where a party stands on issues. Not all parties adopt a state platform. Some adopt party resolutions that are statements of policy, not “platforms,” but that help guide legislative initiatives within the state. Whatever the parties call them, these statements of values are important guidance mechanisms for political action within a state.

Eventually, aging people need improved federal aging policies, not just state-by-state advances. There is a relationship between state and federal policy in which some improvements will be demonstrated first at the state level, and later disseminated nationally. In other cases, federal rule changes will affect caregiving options across many states.

About Caregiving

As millions of us embrace the gift of longer lives in the 21st century, our communities will increasingly need to support their elderly residents so that these residents can age in place and live in dignity. Seven out of 10 of us will need assistance from another person. We will need help with simple activities such as eating, bathing, and moving from place to place. That’s why we need a community that cares.

Unless we act to make home caregiving more feasible for more people, professional care will be the only alternative. Institutional care comes at a high cost, often supported by taxes. Few people would choose institutional care if home care were possible. Allowing people to remain at home for as long as feasible is both more compassionate and more cost-effective.

There are many kinds of families and community needs. Recognizing diversity is important to all of us. The FCPP uses the word “family” to mean all those who are bound to the person who is ill or disabled by friendship, relationship, or law. There are also many ways to improve the lives of caregivers. Options for action vary by state and community.

2015 Submissions

The FCPP had a busy year in 2015. Many volunteers helped to submit language proposals in 2015. Volunteers found that the process was easy and fun. Most parties welcome participation by people within their state and are quite grateful for suggestions.

● The FCPP submitted language to the National Republican Party via the party website in December 2015, with the help of caregiver advocates in New York and Illinois.
● The Arizona Democratic Party received a platform submission in August 2015 and a resolution proposal shortly thereafter.
● The Arkansas Republican Party received a platform submission in December 2015.
● The California Democratic Party received platform submissions in October and November 2015.
● The California Republican Party received a platform submission in September 2015 but subsequently adopted its 2016 platform without including language relating to caregivers.
● The Georgia Democratic Party received a platform submission in December 2015.
● The Maine Democratic Party received a platform submission in December 2015.
● The New Mexico Republican Party received a platform submission in December 2015.
● The Oregon Democratic Party received a platform submission in December 2015.
● The Vermont Democratic Party received a platform submission in October 2015.

Want to Know More?

  • Visit the Family Caregiver Platform Project website at caregivercorps.org.
  • Send an email message to info@caregivercorps.org to learn more about how to get involved.
Featured Dr. Joanne Lynn

Improve Quality and Reduce Costs by Supporting Family Caregivers

Supporting family caregivers can reduce the total cost of care for frail elders while improving their quality of life. It’s a win-win situation that’s good both for our hearts and our pocketbooks.

Institutional care, whether in a nursing home or hospital, comes at a high cost often paid for by Medicaid or Medicare.[1] The expense of nursing home care will soon become unsustainable for state Medicaid budgets as our population ages. Seniors over age 65 will double[2] and those over 85 will triple by the year 2050.[3] Supporting family caregivers is one of our best options to keep costs down while helping seniors live independently, which is what most of them want.

We have evidence that supporting caregivers has positive benefits for everyone. For example, a review of research literature provides encouraging indications that supporting people who care for someone with dementia often has positive effects on the care recipients’ behavior, function, and the length of time they remain at home.[4] Interventions adapted to the individualized needs of both dementia patients and their caregivers help to reduce caregiver burden and prevent or delay elders’ institutionalization.[5]

Medicare does not cover the cost of nursing homes. The largest share of Medicare spending is for hospital services.[6] Supporting family caregivers is crucial in that arena too. Family caregivers help elders avoid hospitalization by overseeing physician visits, nutritional needs and medication schedules. Should their care recipient need to be hospitalized, a critical link in transitional care will be the family caregiver, though they are commonly thought of mainly as “visitors” rather than a crucial part of the care team.[7]

Preventable hospital readmissions are a big part of unnecessary medical spending. Hospital readmissions cost Medicare $26 billion annually and $17 billion is considered avoidable.[8] Transitions between care settings are critical points where breakdowns in communication can result in readmission to the hospital. Substantial savings could be realized if hospitals, doctors, and community programs worked together with caregivers to create a clear caregiving plan at the time of hospital discharge.[9]

Simply recognizing the economic impact of family caregiving would help us realize that the care system can’t function without it. About 40 million Americans provide unpaid care for a family member or friend who is ill, disabled or aged.[10] This invisible workforce carries out its tasks as a labor of love, expecting little in return. Family members help with activities of daily living, coordinate health care services and perform complex medical tasks that used to be relegated to nursing. While the sense of connection caregivers provide for loved ones may be priceless, their service has a great economic impact. The hours of care they supply has been valued at approximately $470 billion.[11]

Despite best intentions, caregiving can be daunting, especially when recipients have complex health conditions or cognitive impairments like dementia.[12] In a recent national study examining the experiences of family caregivers of older adults, caregivers reported feeling exhausted, having too much to do, and little time for themselves.[13] One study found that the chief risk of institutionalization is not a decline in the health of care recipients, but a decline in the health of their caregivers.[14] It therefore makes sense, both economically and as an act of human decency, to provide support for caregivers so they can continue to keep their loved ones at home, an option most would prefer.

Footnotes

[1] Reaves, E L, and M B Musumeci. “Medicaid and Long-Term Services and Supports: A Primer.” Kaiser Family Foundation. May 8, 2015. (Accessed November 3, 2015). http://kff.org/medicaid/report/medicaid-and-long-term-services-and-supports-a-primer/

[2] “Administration on Aging: Aging Statistics.” U.S. Department of Health and Human Services: Administration for Community Living. (Accessed August 19, 2015.) http://www.aoa.acl.gov/Aging_Statistics/index.aspx

[3] “Selected Long-term Care Statistics” Family Caregiver Alliance. (Accessed August 19, 2015.) https://caregiver.org/selected-long-term-care-statistics

[4] “Dementia: A NICE-SCIE Guideline on Supporting People with Dementia and Their Carers in Health and Social Care; NICE Clinical Practice Guidelines, No. 42.” Social Care Institute for Excellence. Leicester (UK): British Psychological Society: 2007. (Accessed November 3, 2015). http://www.scie.org.uk/publications/misc/dementia/dementia-fullguideline.pdf

[5] Brodaty, H, A Green, and A Koschera. “Meta-analysis of Psychosocial Interventions for Caregivers of People with Dementia.” Journal of the American Geriatric Society 51, no. 5 (2003):657–664. (Accessed November 3, 2015) http://www.ncbi.nlm.nih.gov/pubmed/12752841

[6] Blum, J. “Testimony on Improving Quality, Lowering Costs: The Role of Health Care Delivery System.” Presentation to the US Senate Committee on Homeland Health, Education, Labor and Pensions, November 10, 2011. US Department of Health and Human Services. (Accessed November 3, 2015) http://www.hhs.gov/asl/testify/2011/11/t20111110a.html

[7] Reinhard, S, L Feinberg, R Choula, and A Houser. “Valuing the Invaluable: 2015 Update; Undeniable Progress but Big Gaps Remain.” AARP Public Policy Institute. July 2015. (Accessed November 3, 2015) http://www.aarp.org/content/dam/aarp/ppi/2015/valuing-the-invaluable-2015-update-new.pdf

[8] Lavizzo-Mourey, R. “The Human Face of Hospital Readmissions.” Health Affairs Blog. March 14, 2013. (Accessed November 3, 2015) http://healthaffairs.org/blog/2013/03/14/the-human-face-of-hospital-readmissions/

[9] Gibson, M J, K A Kelly, and A K Kaplan. “Family Caregiving and Transitional Care: A Critical Review.” October 2012. Family Caregiver Alliance. (Accessed November 3, 2015) https://www.caregiver.org/sites/caregiver.org/files/pdfs/FamCGing_TransCare_CritRvw_FINAL10.31.2012.pdf

[10] Reinhard, S, L Feinberg, R Choula, and A Houser. “Valuing the Invaluable: 2015 Update; Undeniable Progress but Big Gaps Remain.” AARP Public Policy Institute. July 2015. (Accessed November 3, 2015) http://www.aarp.org/content/dam/aarp/ppi/2015/valuing-the-invaluable-2015-update-new.pdf

[11] Reinhard, S, L Feinberg, R Choula, and A Houser. “Valuing the Invaluable: 2015 Update; Undeniable Progress but Big Gaps Remain.” AARP Public Policy Institute. July 2015. (Accessed November 3, 2015) http://www.aarp.org/content/dam/aarp/ppi/2015/valuing-the-invaluable-2015-update-new.pdf

[12] Reinhard, S, L Feinberg, R Choula, and A Houser. “Valuing the Invaluable: 2015 Update; Undeniable Progress but Big Gaps Remain.” AARP Public Policy Institute. July 2015. (Accessed November 3, 2015) http://www.aarp.org/content/dam/aarp/ppi/2015/valuing-the-invaluable-2015-update-new.pdf

[13] Spillman, B C, J Wolff, V A Freedman, and J D Kasper. “Informal Caregiving for Older Americans: An Analysis of the 2011 National Study of Caregiving.” U.S. Department of Health and Human Services; Office of the Assistant Secretary for Planning and Evaluation. April 2014. (Accessed November 3, 2015) http://aspe.hhs.gov/report/informal-caregiving-older-americans-analysis-2011-national-health-and-aging-trends-study

[14] Talley, R C, and J E Crews. “Framing the Public Health of Caregiving.” American Journal of Public Health 97, no. 2 (February 2007):224-228 and corrected 97, no. 3 (March 2007):393, doi:10.2105/AJPH.2004.059337. (Accessed November 3, 2015) http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1781412/

Elizabeth Rolf

Why Advocates are Trying to Push Caregiving onto the 2016 Presidential Agenda

Caregiving is becoming an important topic for the nation to pay attention to, and it is great that the Washington Post is shining the light on family caregiver needs. On October 20, the Washington Post ran an article explaining why caregiving discussions should be on the 2016 presidential agenda. Our Family Caregiver Platform Project and other state representatives and organizations were mentioned for their efforts to introduce legislature on family caregivers. Most presidential candidates have stayed silent about caregivers, but the article listed other organizations that are advocating for family caregiver needs, training, and supports. Presidential candidates should become aware of caregiver needs, speak out on the behalf of these issues, and initiate political action as the election day draws closer.

The link to the full Washington Post article by Tara Bahrampour can be found here: https://www.washingtonpost.com/local/social-issues/caregiving-gets-political-as-organizers-push-issue-onto-local-national-agendas/2015/10/20/479fee44-72aa-11e5-8d93-0af317ed58c9_story.html

Ai-Jen Poo for Caring Across Generations
Dr. Joanne Lynn

Time for Family Caregivers to Be Eldercare Activists

The Family Caregiver Platform Project (FCPP) has a number of national partner organizations that provide valuable support for caregivers and care recipients. Our partners are teaming up with us because they share our vision of making caregiver issues part of political discussions throughout the 2016 election cycle. The FCPP helps leverage the work of our partner organizations who are engaged in creating meaningful change through grassroots political actions. Members of our partner organizations are working actively in their states to make this effort a success.

One of our partners is Caring Across Generations, a national campaign that has helped build a coalition of more than 200 organizations advocating for innovation in long-term care. Its co-director, Ai-Jen Poo, believes that as our nation’s aging population soars, new outlooks on aging and caregiving are needed. She’s convinced we are at a moment where the American people will lead a cultural shift to demand better care for our most vulnerable citizens, including the elderly. In an interview in PBS’ Next Avenue, she described baby boomers as “a culture-driving, culture-changing generation.” She expects them to be involved decisively in driving caregiving policy change. But they cannot do it alone. Caring Across is mobilizing family members of all ages to lead the charge in making caregiving a national public policy priority. As Ai-Jen says, “It should be something that every candidate in next year’s presidential election cycle will have to answer for.”

The FCPP website, caregivercorps.org, provides a roadmap for anyone who wants to make their voice heard in their state political party. The FCPP provides model language that is a starting point for submission in your state. It also provides timelines for political party activities, and outlines ways to engage policymakers at the local level. Volunteers in California and Arizona have already succeeded in raising political awareness about family caregiving. You can do the same in your state.

This is a vital movement you can join now. The work we are doing will accelerate in 2016, as more state party platform committees convene to discuss what language will be included in their party statements about key issues.

Davis Baird

Caregiving in the United States 2015 Report

Caregiving in the U.S. 2015 is a joint research study between the National Alliance for Caregiving and AARP providing new insights into higher-hour caregivers (at least 21 hours of care a week), caregivers ages 75 and older, multicultural caregivers (including African American/black, Hispanic/Latino, and Asian American/Pacific Islander populations), and the challenges facing caregivers in the workplace.

You can download the report at: caregiving.org/caregiving2015

Caregiving in the U.S. 2015 provides surprising insight into today’s family caregivers. The typical higher-hour caregiver (who provides unpaid care for at least 21 hours a week) has been caregiving for an average of 5-1/2 years and expects to continue care for another 5 years. Nearly half of these higher-hour caregivers report high emotional stress (46 percent).

Also surprising are findings from subpopulations of caregivers. Today, nearly a quarter of America’s caregivers are millennials between the ages of 18 and 34 and are equally likely to be male or female. On the other end of the spectrum, caregivers ages 75 or older are typically the sole support for their loved one, providing care without paid help or help from relatives and friends. Men, a group often stereotyped as failing to take on caregiving responsibilities, currently represent 40 percent of family caregivers and provide an average of 23 hours a week supporting a loved one.

“As previous AARP research has shown, we’re facing a caregiving cliff,” said Dr. Susan Reinhard, senior vice president and director, AARP Public Policy Institute; and chief strategist, Center to Champion Nursing in America. “By mid-century, there will be only three family caregivers available for each person requiring care. That means, to avoid putting them at higher risk as they age, we need to provide support for existing caregivers who are underserved by the current long-term services and support system.”