Category Archives: Caregiving

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/

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.

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.”

Caregivers and the White House Conference on Aging

This year’s White House Conference on Aging will be unique. Instead of being shaped by legislation directed by Congress, it has sought broad public engagement. During the past year, issues and ideas important to older Americans have been gathered at listening sessions around the country and through comments submitted on the event website, whitehouseconferenceonaging.gov.

The White House Conference on Aging is eager for individuals to view and participate in its webcast on July 13. Viewers are encouraged to comment and ask questions via Twitter and Facebook.

Caregiving affects all four of the policy areas that will be discussed: Healthy Aging, Long Term Services and Supports, Elder Justice, and Retirement Security. The conference recognizes caregivers’ stress, their need for navigation of services, and the financial hardships they endure.

Organizations and businesses taking new actions around caregiving and other issues of aging are invited to let the White House know at info@whaging.gov.

Policy Briefs can be found at:
http://whitehouseconferenceonaging.gov/issues/index.html

Webcasts of the regional forums held earlier this year are online at:
http://whitehouseconferenceonaging.gov/happening/index.html

State Alzheimer’s Disease Plans

The Alzheimer’s Association has put together a detailed list of recommendations for Alzheimer’s caregivers. The document includes supports for caregivers in each state, along with each states’ plans to increase education and encourage families to participate in training programs to care for Alzheimer’s patients. All caregivers should have access to services that protect the safety of the patient and work to ensure caregivers are properly trained.

The detailed list can be found on the Alzheimer’s Association website here: http://act.alz.org/site/DocServer/CAREGIVERS.pdf?docID=4644.