Family Caregiving and Public Policy: How Research and Policy Can Create New Opportunities to Support Family Caregivers October 5, 2017 7th International Carers Conference C. Grace Whiting, J.D. Chief Operating Officer National Alliance for Caregiving Susan C. Reinhard, RN, PhD, FAAN Senior Vice President and Director, AARP Public Policy Institute Chief Strategist, Center to Champion Nursing in America
BACKGROUND AND CONTEXT: FAMILY CAREGIVERS IN THE U.S. 2
Caregiving in the U.S. 2015 Joint effort between the National Alliance for Caregiving and the AARP Public Policy Institute Report available at www.caregiving.org/caregiving2015
Caregiving in the U.S. 2015 More than 43 million Americans perform the family caregiving role each year to someone age 18+. Family caregiving cuts across gender, age and race Four in ten of these family caregivers are men. One in four is a millennial. Caregiving tasks vary- ADLs, IADLs, medical/nursing tasks, care management and coordination. Source: National Alliance for Caregiving-AARP Public Policy Institute, Caregiving in the U.S. 2015
Caregiving in the U.S. 2015: Report Background Family caregiver is defined as an individual, age 18 or older, who provides unpaid care to family member or friend who needs assistance with everyday activities The research study is based on quantitative, online interviews of 1,248 family caregivers age 18 and older Includes a random sample of 1,015 caregivers, with oversample for African American, Hispanic/Latino, and Asian American Pacific Islander caregivers Special focus on family caregivers who support a loved one for at least 21 hours each week ( higher-hour ), medical/nursing tasks, caregivers in the workplace, and caregivers age 75 or older Source: National Alliance for Caregiving-AARP Public Policy Institute, Caregiving in the U.S. 2015
Employed Family Caregivers More than 23 million, or 60 percent of, family caregivers are employed. Work an average of 34 hours per week. Half (51 percent) of employed family caregivers are ages 50+. One in four employed caregivers are also higher hour (20+ hours per week) caregivers. Most (61 percent) employed caregivers have made one or more workplace accommodations.
Employed Family Caregivers
Higher-Hour Caregivers Higher-hour caregivers provide at least 21 hours each week caregiving. The average amount of time for higher- hour caregivers is 62 hours per week and they have a high burden of care (4 out of 5 in a 5- level index). They are typically the sole, unpaid care provider and nearly four times as likely to be caring for a spouse or partner. These caregivers often report that they had no choice in taking on the caregiving role. Overall: 32% of caregivers are higher-hour Percent Higher-Hour by Ethnicity: White: 28%, Asian American Pacific Islander: 37%, African American/Black: 39%, Hispanic/Latino: 40% 8
Caregivers Age 75 and Older Caregivers age 75 or older are typically caring for a close relative (spouse, adult child, or sibling). They are the sole provider of care, and usually live with the care recipient. These caregivers, on average, have provided care for 5 ½ years, spending about 34 hours per week performing multiple caregiving responsibilities: 2 Activities of Daily Living (ADL); 5 Instrumental Activities of Daily Living (IADL); and Responsibilities Include: ADL- Bathing, Dressing & Feeding IADL- Housework, Cooking & Managing Finances M/N Tasks- Injections, Tube Feedings & Colostomy Care Medical/Nursing Tasks (M/N Tasks). 9
Source: National Alliance for Caregiving-AARP Public Policy Institute, Caregiving in the U.S. 2015 Today s Family Caregiver Caregivers reflect the diversity of the United States: they come from every age, gender, race/ethnicity and socioeconomic status. Performs at least 2 Activities of Daily Living (ADLs) 4 Instrumental Activities of Daily Living (IADLs) Medical/Nursing (M/N) Tasks Responsibilities Include: ADL- Bathing, Dressing & Feeding IADL- Housework, Cooking & Managing Finances M/N Tasks- Injections, Tube Feedings & Colostomy Care
Source: National Alliance for Caregiving-AARP Public Policy Institute, Caregiving in the U.S. 2015 The Typical Family Caregiver The typical caregiver is a 49 year-old female caring for a 69 year-old relative due to a long-term physical condition. 22% of caregivers are caring for someone with Alzheimer s or dementia. Many are considered higher-hour -- providing 21 or more hours of care each week. SNAPSHOT 60% Women 40% Men 13% African American/Black 6% Asian American Pacific Islander 17% Hispanic/Latino 62% White
Source: National Alliance for Caregiving-AARP Public Policy Institute, Caregiving in the U.S. 2015 Who Receives Care? Caregivers of Recipient Ages 18+ (n=1,248) 0 20 (n=826) A Hours of Care 21 or more (n=416) B Relative 85% 81% 93% A Parent 42 42 43 Spouse or partner 12 7 24 A Parent-in-law 7 8 5 Grandparent or grandparent-in-law 7 8 B 4 Adult child 5 5 6 Uncle or aunt 4 4 3 Sibling 3 3 3 Other relatives 3 3 3 Sibling-in-law 2 3 1 Grandchild * * -- Nonrelative 15 19 B 7 Friend 10 13 B 4 Neighbor 3 3 2 Other nonrelative 2 3 2
Caregivers and the Healthcare Team Caregiving Activity All Caregivers (n=1,248) Cancer Caregivers (n=111) Dementia Caregivers (n=372) Communicating with healthcare professionals (doctors, nurses, social workers) about his/her care Monitoring severity of recipient s condition to adjust care accordingly Advocating for him/her with health care providers, community services, government agencies 66% 82%* 80%* 63% 76%* 79%* 50% 62%* 65%* Source: National Alliance for Caregiving-AARP Public Policy Institute, Caregiving in the U.S. 2015; See also, National Alliance for Caregiving-Alzheimer s Association, Dementia Caregiving in the U.S. 2017 and National Alliance for Caregiving- Cancer Support Community, Cancer Caregiving in the U.S. 2016
Caregiving & Choice Q39. Do you feel you had a choice in taking on this responsibility for caring for your [relation]? Base: Caregivers of Recipient Age 18+ (n=1,248) Yes 50% % No Hours Caregiving per Week No 49% 0-20 (n=826) 21+ (n=416) 45% 59%* The feeling of obligation or lack of choice is especially pronounced among those caregivers who live with their care recipient and who provide more than 20 hours of care weekly (64% reporting no choice). Caregivers who feel they had no choice in taking on their role are different from those who feel they had a choice, often finding themselves facing complex care situations, and increased stress and strain. Data from Caregiving Costs: Declining Health in the Alzheimer's Caregiver as Dementia Increases in the Care Recipient. Learn more at www.caregiving.org/research. 14
Impact of Choice Finds it difficult to do ADLs and medical/nursing tasks required Finds it difficult to coordinate care and find affordable services for recipient Experiences more emotional stress, and financial and physical strain Is more likely to be in poor or fair health and to say caregiving made their health worse Data from Caregiving Costs: Declining Health in the Alzheiimer s Caregiver as Dementia Increases in the Care Recipient. Learn more at www.caregiving.org/research. 15
Caregivers as Partners in Healthcare In addition to supporting long-term care systems, caregivers improve the health of populations Caregivers can reduce avoidable hospital readmissions in discharges to the home By 25% at 90 days and by 24% at 180 days Sometimes, caregivers can help an older adult or person with disability to live in the community longer, delaying costly institutionalization Rodakowski, et al. Caregiver Integration During Discharge Planning for Older Adults to Reduce Resource Use: A Metaanalysis, Journal of the American Geriatric Society (April 2017), http://onlinelibrary.wiley.com/doi/10.1111/jgs.14873/full Mittleman, et al. An intervention that delays institutionalization of Alzheimer's disease patients: treatment of spousecaregivers, Gerontologist (1993), https://www.ncbi.nlm.nih.gov/pubmed/8314099
To Be Effective, Caregivers Need Support Neglecting caregiver health, psychological, and financial well-being can put the care recipient at risk Caregivers may have declining health, especially when caring for someone with a high-burden diseases, such as dementia and cancer Many express higher psychological stress, such as depression and anxiety, especially when caring intensifies On average, caregivers spend nearly $7,000 out-of-pocket, and minority populations bear a higher cost relative to income Families Caring for An Aging America (2016), nam.edu/families-caring-for-an-aging-america Family Caregiving and Out-of-Pocket Costs (2016), www.aarp.org/home-family/caregiving/info-2016/caregiving-out-of-pocket-cost-report.html
Family Caregiving and Out-of-Pocket Costs Source: AARP Research, Family Caregiving and Out-of-Pocket Costs: 2016 Report
The Aging of the Baby Boom and the Growing Care Gap In 2010, the caregiver support ratio was more than 7 potential caregivers for every person in the high-risk years of 80-plus. By 2030, the ratio is projected to decline sharply to 4 to 1. Source: AARP Public Policy Institute, The Aging of the Baby Boom and the Growing Care Gap It is expected to fall to less than 3 to 1 in 2050, when all boomers will be in the high-risk years of late life.
Home Alone: Family Caregivers Providing Complex Chronic Care Partnership between the AARP Public Policy Institute and the United Hospital Fund Funded by The John A. Hartford Foundation Source: AARP Public Policy Institute, Home Alone
Methodology and Sample The respondents were then asked Beyond emotional support and companionship, caregiving may include many different types of specific help. Did you help with: o Personal care tasks (such as bathing, dressing, grooming, eating, moving from bed to chair, or going to the toilet); o Household tasks (such as shopping, managing personal finances, arranging for outside services, or providing transportation); or o Medical or nursing tasks (such as managing medications, changing dressing on wounds, monitoring equipment like oxygen tanks)? 21
Home Alone Findings by Medical/Nursing Task Source: AARP Public Policy Institute, Home Alone
The Long-Term Services and Supports State Scorecard Concise performance tool to put long-term support and services (LTSS) policies and programs in context, prompt dialogue, and spark action Multidimensional approach to comprehensively measure performance over time Target areas for improvement View from a consumer perspective Engage public and private sectors 23
The Long-Term Services and Supports State Scorecard Findings Where you live matters because states vary greatly in how longterm services and supports are provided. States must pick up the pace of change to meet the needs of a growing number of people aging and living with disabilities. Measurement, federal and state initiatives, and stakeholder engagement can accelerate the pace of change. Family caregiver support was a key factor in Scorecard rankings. 24
Scorecard Dimension: Support for Family Caregivers In a high-performing LTSS system, the needs of family caregivers are assessed and addressed so that they can continue in their caregiving role without being overburdened. Selected Indicators: Protecting caregivers from employment discrimination Having paid family leave and paid sick days Having state unemployment insurance for family caregivers. Having a caregiver assessment. Having Caregiver Advise, Record, Enable (CARE) Act legislation 25
Families Caring for an Aging America Consensus Report from the National Academies of Sciences, Engineering and Medicine. Asserts that any truly person-centered care must also be family-centered, and include the family caregiver. Source: National Academies of Sciences, Engineering and Medicine
On Pins & Needles: Caregivers of Adults with Mental Illness Conducted in partnership with the National Alliance on Mental Illness and Mental Health America Quantitative online interviews with 1,601 caregivers ages 18 or older, currently providing care or cared in the year prior Targeted, non-probability-based design provides an in-depth look at a preidentified population. Findings may underestimate challenges as respondents were typically more educated and wealthier than the general public
On Pins & Needles: The Big Picture 8.4 million Americans care for an adult with an emotional or mental health issue* Caregivers have typically provided care for 8.7 years, while caregivers of an adult care for 4 years on average (any condition). Most care recipients (58%) are between 18-39 years; most caregivers (45%) are parents caring for an adult child, though other relationships can be impacted The main conditions requiring care are bipolar disorder (25%), schizophrenia (25%), depression (22%), and anxiety (11%) *from Caregiving in the U.S. 2015, National Alliance for Caregiving and AARP Public Policy Institute
Whom are they caring for? Average age is 46.3 years old but most are under age 40 Almost half live in same household as caregiver (45%) or within 20 miles (27%) Three in ten have an alcohol or substance abuse issue Almost half are financially dependent on family and friends
Data from On Pins & Needles: Caregivers of Adults with Mental Illness, in partnership with NAMI and Mental Health America. Learn more at www.caregiving.org/research. National Alliance for Caregiving 30
Mental Illness Caregiving: Managing Medications, y m ay struggle to find the correct drug and dose Data from On Pins & Needles: Caregivers of Adults with Mental Illness, in partnership with NAMI and Mental Health America. Learn more at www.caregiving.org/research. 31
Mental Illness: Conversations with Health Care Providerslike mental illness, face stigma and often feel excluded Data from On Pins & Needles: Caregivers of Adults with Mental Illness, in partnership with NAMI and Mental Health America. Learn more at www.caregiving.org/research. 32
Paperwork & Financesl pressure can strain the caregiver Figure 24: Time Spent Managing Paperwork or Finances Q41. How time consuming is/was it for you to help your [relation] with his/her care paperwork or finances? Figure 25: Care Recipient s Financial Dependence Q43. How financially dependent is/was your [relation] on his/her family or friends? Data from On Pins & Needles: Caregivers of Adults with Mental Illness, in partnership with NAMI and Mental Health America. Learn more at www.caregiving.org/ research.
CURRENT FEDERAL AND STATE POLICY 34
Translating Research Into Policy: The CARE Act AARP developed model legislation based on the Home Alone findings- the Caregiver Advise, Record and Enable (CARE Act). Under the CARE Act: Hospitals must identify a family caregiver for inpatient admissions and record the family caregiver in the medical record. Hospitals must notify the family caregiver of discharge plans for the person in the hospital. Family caregivers must be offered training on medical/nursing tasks they may be asked to perform. The law supports patients and family caregivers of all ages, and for any diagnosis Law in 39 states and territories- and counting! Source: AARP Public Policy Institute, Home Alone
Transforming Practice: National CARE Act Scan AARP is leading a national scan of states and health systems that are implementing the CARE Act to identify and diffuse promising practices and to determine where gaps remain. Focused on key areas of implementation: Identifying the Family Caregiver Information Technology and Electronic Health Records Identifying Training Resources Interviews with cross-disciplinary professionals, and family caregivers. Examples include: Nursing Pharmacy Physical Therapy Information Technology
Quotes from the National Scan of CARE Act Implementation The nurse navigator role has increased in responsibility and importance. [The CARE Act] is a paradigm shift from emergency contact to caregiver". Probably after the first week of go-live- I was hooked and I was just 100% on board about the benefit of this work and this legislation for patients and for caregivers.
Payment Reform and Family Caregivers Medicare payment innovations are moving U.S. health care towards value-based care, rather than volume-based care. These payment models, such as bundles and Accountable Care Organizations, will likely lead to health systems relying more on family caregivers. Most of these policies are at the federal level (through Medicare), but other payers (such as Medicaid) could experiment these policies at the state level.
The RAISE (Recognize, Assist, Include, Support and Engage) Family Caregivers Act The RAISE Family Caregivers Act would authorize the development and maintenance of a National Strategy to Support Family Caregivers. The National Strategy would be developed by the secretaries of health and human services, labor, housing and other key government and nongovernment stakeholders. The National Strategy is a key recommendation from the National Academies report on family caregivers of older adults. The RAISE Family Caregivers Act is under consideration by Congress. It has passed the Senate, and has been introduced in the House of Representatives.
The Credit for Caring Act This act would provide a tax credit for family caregivers with out-ofpocket caregiving-related expenses. Family caregivers who spend at least $2,000 on caregiving could receive a tax credit up to $3,000. Applies to family caregivers of people of all ages. This new policy proposal has broad support in Congress, but has not yet been passed.
Telehealth Policies The public and private sectors are beginning to embrace the use of telehealth services. Telehealth allows people to receive health care from providers remotely, rather than in-person. In recent months, the U.S. Department of Veterans Affairs has expanded the availability of telehealth. Increasing the use of telehealth could help family caregivers. For example, less need to transportation support to appointments. Barriers: Legal, Payment, Privacy, Infrastructure
Employment Anti-Discrimination Laws The 2017 LTSS State Scorecard tallied which U.S. states have laws that specifically protect family caregivers from employment discrimination as a protected classification under law. As of 2017, just four states have such laws enacted. Connecticut Delaware District of Columbia Minnesota Note: Most employment law in the U.S. is enacted at the state level.
State Unemployment Insurance Laws for Family Caregivers Available to family caregivers who voluntarily leave work to care for an ill or disabled family member Must be deemed good cause (i.e., voluntarily quit job due to compelling family circumstances) to be eligible to receive benefits Benefits available for up to 1-year Must be able and available to return to work As of 2016, 25 states enacted unemployment insurance laws Laws are permanent; would require legislative repeal One state repealed law in 2015 Help from $7B in federal stimulus in 2009 to modernize unemployment insurance programs
Current Government Supports Need Expansion National Family Caregiver Support Program www.acl.gov/programs/support-caregivers/national-family-caregiver-support-program Lifespan Respite Care Program www.acl.gov/programs/support-caregivers/lifespan-respite-care-program VA Caregiver Support Program (Department of Veterans Affairs) www.caregiver.va.gov/ Eldercare Locator www.eldercare.gov State and federal tax credits, where available Family and medical leave, including the federal FMLA benefit and state paid leave programs (available in CA, RI, NJ, NY, WA, and DC)
Private Sector Can Offer Innovations & Models Caregiving as a social movement supported by social media and tech Create better, affordable technologies to reduce caregiver burden and improve the care experience Integrate the family caregiver into health care delivery models View caregivers as partners during care transitions (such as hospital to home) Improve support for employed caregivers in the workplace
What is a Caregiving Coalition? Community that addresses needs of family caregivers across the lifespan Includes families of origin and families of choice Typically offers information and referral services, educational outreach, and advocacy United community voice to meet social, medical, physical, financial, spiritual, and emotional needs of family caregivers Often grassroots
How Do We Support Coalitions? Coalition Guidebooks Annual Conference Quarterly Webinars Mini-Grants from Sponsors Online News & Outreach: Newsletter, Listserv, Facebook, Twitter & LinkedIn 48
Advocacy Coalition Example: Hawaii Family Caregiver Coalition State Legislature Visits Annual Caregiver Day at the State Capitol Annual Aging & Disabilities Issues guidebook Worked to establish the Kapuna Caucus to focus on caregiving issues 49
Educational Coalition Example: Caregiver U (Austin, Texas) Uses 20 Central Texas non-profits to pool support and resources for caregivers and families Offers education (Powerful Tools for Caregivers) and conferences, free for caregivers Hosts a blog to provide additional resources Falls Prevention Program 50
Caregiver Coalition of NE Florida: Coalition Background And Overall Structure University of North Florida Study Caregiver Needs Assessment Approached naturally occurring partners Informal for two years Supported/staffed by a local hospice association Resources include an annual conference, workshops for caregivers and recipients, and newsletter Strong online presence 51
Effective Advocacy Requires Many Voices Grassroots (People with disabilities, patients, older adults, family caregivers) Coalitions Grasstops (Persons of influence, policymakers, lawmakers. Champions) Providers, Payors, and other stakeholders Policy Experts and Think Tanks State and Local Representatives
FOR MORE INFORMATION EMAIL: SREINHARD@AARP.ORG TWITTER: @SUSANPOLICY EMAIL: GRACE@CAREGIVING.ORG TWITTER: @CGRACETWEET 53