By Ranak Trivedi, PhD and Ambri Pukhraj, MS
An aging society places increasing emotional, physical, and financial demands on informal caregivers. These are family members and friends who provide significant, unpaid help to patients suffering from illnesses. This is not a trivial issue since 50 million Americans identify as informal caregivers and together provide $470 billion worth of unpaid services.1 Reliance on informal caregivers is set to increase as families are paradoxically shrinking. In 2010, 80-year-old patients had an average of 7 informal caregivers, but this is projected to drop to 5 by 2030 and 3 by 2050.2,3 Informal caregivers’ involvement is often crucial to improving outcomes for those who may be ill, as these patients not only live longer, but live better with fewer illness exacerbations, lower readmission rates, and longer times at home.4-7 Yet, informal caregivers have historically faced numerous systemic barriers in supporting their loved one at home and in coordinating care with formal healthcare systems.2 Being an informal caregiver is also known to worsen their own quality of life; increase isolation, stress and depressive symptoms; and even hasten death.8,9 These decrements are reciprocal between caregivers and patients: an emotionally drained caregiver may not be able to provide the needed supports to patients, leading to worse patient outcomes. Without major policy changes, a growing demand and a shrinking supply of caregivers is on track for worse outcomes for informal caregivers and the patients that they support.
Policies to Support Caregivers are Gaining in Popularity: There has been little national focus on protecting informal caregivers’ rights or supporting their roles since the Family and Medical Leave Act (FMLA) of 1993. However, the needs of an aging society combined with the advocacy of AARP, Family Caregiver Alliance, National Alliance of Caregiving, and other organizations have led to a renewed effort on policy-level solutions to support informal caregivers. The Patient Protection and Affordable Care Act (ACA) in 2010 (“Obamacare”) resulted in more help for caregivers through efforts to build the long-term care workforce, create a long-term care insurance program, give states incentives to expand home- and community-based services, and create programs to improve caregiver resources. In parallel, 39 states and the District of Columbia have enacted state level legislation called the Caregiver Advise, Record, Enable (CARE) Act. Aspects of these laws vary across stateliness, but all versions of the CARE Act mandate the assessment of caregiver well-being at the time of patient discharge and provide family caregivers with education and instruction of the medical tasks they will need to perform for the patient at home. While most states are still in the early stages of implementation, there is recent evidence that implementing the CARE Act could reduce rehospitalizations.
This groundswell led to the federal Recognize, Assist, Include, Support, and Engage (RAISE) Act that was passed into law in January 2018. The RAISE Family Caregivers Act requires the Secretary of Health and Human Services to develop, maintain, and update a strategy to recognize and support family caregivers. The bill brings representatives from the private and public sectors – such as policy experts, patient and caregiver representatives, employers, state and local officials, and others – together to advise and make recommendations regarding this new strategy. Among its provisions, the RAISE Act calls for bringing together public and private sectors to recommend actions that communities, governments, providers and others can take to make it easier for caregivers to coordinate care and receive information, referrals and resources. These state and national legislations are complemented by policies already in place at major healthcare delivery systems and private companies. For instance, the Department of Veterans’ Affairs has been at the vanguard of providing support to caregivers of Veterans. In 2010, the Family and Caregiver Omnibus Act was enacted into law with the key provision of providing stipends to eligible caregivers of post-9/11 Veterans. To date, 27,000 caregivers have been enrolled for a cost of $1 billion. In June 2018, these benefits were expanded to service connected pre-9/11 Veterans through the VA Maintaining Systems and Strengthening Integrated Outside Networks Act (MISSION) Act.
What can Health Psychologists Do? As health psychologists, we are ideally suited to both work within these fields and to shape their future. We are trained to meld strong methodological training and scientific expertise with a profound understanding of the factors that contribute to human wellness and illness. We view individuals’ health and well-being as a result of the intersection of individual, family, and societal forces. Caregiving exemplifies this confluence. As clinicians, we can assess and treat the unique strain that comes from taking on the caregiving role for those who may be ill. Counseling, self-care, relaxation training, and respite programs can improve both the caregiver’s and care recipient’s quality of life, and could delay older adults’ institutionalization and reduce re-hospitalization. Yet, few caregivers have access to such services. As researchers, many of us are developing and testing programs, such as programs to address caregiver burden10,11 and enhance partnerships within families.12 Policies that are being developed require a strong empirical foundation, and we can provide that through our understanding of sociobehavioral and biobehavioral mechanisms that underlie the patient-caregiver dynamic. NIH has recently released funding solicitations especially focused on caregiver issues in Alzheimer’s Disease, chronic illness self-management, cancer, and palliative care. The more interest there is in these initiatives, the greater the chances of increasing the funding allotted to this line of research. As educators, we are in a strong position to interact with students within psychology, medicine, and other fields, to elevate the awareness of caregiver issues and the importance of caregiver policies in classroom didactics and mentorship relationships.
We can also champion efforts to support informal caregivers within our institutions and workplaces. Many private workplaces are evaluating policies that can support caregiving roles through telework and flexible work hours. Stanford University, our home institution, provides emergency babysitting for young children or to watch an ill adult, while also providing support through various educational initiatives. Needless to say, we can also play key roles in shaping, improving, and supporting state and national policies. Calling our legislators to urge them to vote for caregiver supports is good professional citizenship.
The shifting sands of caregiver policies are creating unprecedented opportunities for health psychologists. It is up to us to seize them.
Want to learn more ?
|Family Caregiver Alliance||https://www.caregiver.org/|
|Families Caring for an Aging America||http://www.nationalacademies.org/hmd/Reports/2016/families-caring-for-an-aging-america.aspx|
|Caregiving in the US||https://www.aarp.org/content/dam/aarp/ppi/2015/caregiving-in-the-united-states-2015-report-revised.pdf|
|Caregiver Action Network||http://caregiveraction.org/resources/caregiver-statistics|
|LGBTQ Informal Caregiving||http://www.asaging.org/blog/whats-different-about-lgbt-informal-caregiving|
|VA Office of Caregiver Support||https://www.caregiver.va.gov|
- National Alliance of Caregiving, AARP Public Policy Institute. Caregiving in the U.S. 2015; https://www.aarp.org/content/dam/aarp/ppi/2015/caregiving-in-the-united-states-2015-report-revised.pdf.
- National Academies of Sciences E, and Medicine. Families Caring for an Aging America. 2016, Washington, DC:.
- The SCAN Foundation. Growing Demand for Long-Term Care in the U.S. (Updated). SCAN Foundation;2012.
- Davis LL, Burgio LD, Buckwalter KC, Weaver M. A comparison of in-home and telephone-based skill training interventions with caregivers of persons with dementia. Journal of Mental Health and Aging. 2004;10(1):31-44.
- Given B, Given CW, Sikorskii A, Jeon S, Sherwood P, Rahbar M. The impact of providing symptom management assistance on caregiver reaction: results of a randomized trial. Journal of pain and symptom management. 2006;32(5):433-443.
- Pinquart M, Sorensen S. Associations of stressors and uplifts of caregiving with caregiver burden and depressive mood: a meta-analysis. The journals of gerontology Series B, Psychological sciences and social sciences. 2003;58(2):P112-128.
- Rodakowski J, Rocco PB, Ortiz M, et al. Caregiver Integration During Discharge Planning for Older Adults to Reduce Resource Use: A Metaanalysis. Journal of the American Geriatrics Society. 2017;65(8):1748-1755.
- Chang HY, Chiou CJ, Chen NS. Impact of mental health and caregiver burden on family caregivers’ physical health. Archives of gerontology and geriatrics. 2010;50(3):267-271.
- Schulz R, Beach SR. Caregiving as a risk factor for mortality: the Caregiver Health Effects Study. JAMA. 1999;282(23):2215-2219.
- Schulz R, Burgio L, Burns R, et al. Resources for Enhancing Alzheimer’s Caregiver Health (REACH): overview, site-specific outcomes, and future directions. Gerontologist. 2003;43(4):514-520.
- Nichols LO, Martindale-Adams J, Burns R, Graney MJ, Zuber J. Translation of a dementia caregiver support program in a health care system–REACH VA. Archives of Internal Medicine. 2011;171(4):353-359.
- Trivedi R, Slightam C, Fan VS, et al. A couples’ based self-management program for heart failure: Results of a feasibility study. Frontiers in public health. 2016;4:171.