Asking Directions: Mapping a Course to Support Family Caregivers
By Eileen J. Tell
Long-Term Care News, June 2022
Family caregivers are a critical link in the network of those providing long-term services and supports (LTSS). Although momentum to better support family caregivers picked up in 2018 when Congress authorized the Recognize, Assist, Include, Support, & Engage (RAISE) Family Caregivers Act, their needs are often overlooked. A new report from the Leading Age LTSS Center @UMass Boston and Community Catalyst’s Center for Consumer Engagement in Health Innovation presents a strategic road map for better support by bringing together concerns, suggestions and priorities from a diverse range of stakeholders who are working with family caregivers.
The RAISE Act created the Family Caregiving Advisory Council, which identified five primary recommendations to serve as the backbone of a national strategy to improve the physical, emotional and financial well-being of family caregivers. The new report, “Building a National Strategy to Support Family Caregivers: Findings from Key Informant Interviews and Stakeholder Listening Sessions,”* presents specific actions across a variety of players for meeting these five larger goals. It summarizes insights from a year’s worth of strategy sessions and interviews with representatives of more than 100 organizations and presents specific actions across a variety of players for meeting those five larger goals.
According to Rani Snyder, Vice President, Program at The John A. Hartford Foundation, “Supporting the 53 million family caregivers who provide vital support to older adults and people with disabilities every day in this country requires an all-hands-on-deck approach.” The report brings together thoughts on best practices and the most critical action steps from national and state organizations, county health providers, the direct care workforce, large and small employers, aging and disability organizations, faith-based groups, respite care providers and more.
This article summarizes the research methods and key findings of the report.
Building the National Strategy
The RAISE Council developed and published 26 key recommendations in its Report to Congress as the first step to developing the national strategy. These goals and recommendations were based on the real-life experiences of thousands of family caregivers and the organizations that serve them, gathered from
- more than 1,600 caregivers and organizations through a Request for Information (RFI) in the Federal Register in December 2019;
- diverse family caregivers who participated in 12 focus groups over the summer of 2020; and
- additional focus groups with over 40 stakeholder organizations serving family caregivers.
The next step was to undertake an aggressive outreach and interview campaign to inform and build a road map for the National Strategy based on this preliminary work. That research focused on critical topics that had emerged from prior work, including the following:
- Raising awareness on issues around family caregiving and helping family caregivers gain the tools to self-identify and access information and services
- Meeting the needs of culturally and ethnically diverse caregivers
- Identifying solutions and supports for working caregivers
- Expanding the availability and use of respite care
- Ensuring access to a high-quality, adequately paid direct care workforce
- Addressing the needs that family caregivers identified for training, self-assessment and support
- Understanding how to better integrate and support caregivers in the health care, discharge and after-care experience
The goal was to connect with a diverse group of stakeholders to ensure our findings were broadly representative of a range of views about family caregiving across the country. To achieve this, we recruited a wide range of organizations to participate in key informant interviews and listening sessions, aiming to engage organizations that were not previously connected to or familiar with the work of the RAISE Council.
The work took place in two primary components:
- Phase I comprised a series of stakeholder strategy sessions organized around each of the five RAISE goals with important stakeholder organizations representing caregiver issues from various perspectives including aging, disability, provider groups, researchers and others.
- Phase II included key informant interviews and stakeholder listening sessions specifically to generate insights on concrete actions that could be implemented to achieve RAISE goals and recommendations. Overall, we conducted 16 sessions and heard from 103 stakeholder organizations.
Participants included representatives from national, state and local advocates; employers; researchers; faith leaders; foundations; direct service providers; parent information centers; municipal, county and state government officials; health systems; health providers; caregiver resource centers; business leaders; and coalitions. The organizations were also drawn from diverse locations across 37 states.
The organizations we spoke with worked with many different types of family caregivers. For example, some served the disability and aging communities, while others supported kinship families. In some cases, we dedicated listening sessions to organizations working with specific populations of family caregivers, including indigenous and rural caregivers, as well as faith-based organizations that supported family caregivers and organizations that work with communities of color.
We also connected with other sectors that impact the lives of family caregivers. We dedicated listening sessions to speaking with employers, experts in the direct care workforce, health systems, respite providers and county officials. The listening sessions provided a unique opportunity for many of these participants to connect with other stakeholders who are passionate about supporting family caregivers and those they care for. In addition to our research findings, these listening sessions illuminated the importance of dedicated spaces for caregiving stakeholders to connect, exchange insights and collaborate.
Findings and Analysis
The more than 106 hours of transcripts were analyzed using NVivo, a qualitative analysis software program, to ensure systematic analysis of the data. A team of four researchers developed a coding tree organized by the RAISE goals and by major topics and themes within and across those goals. Each transcript was coded and reviewed separately by two researchers.
The Council directed us to identify the action steps that emerged from the stakeholder recommendations in support of each goal and to differentiate those action steps based on whether they were intended for federal, state, or local governments or for private sector entities (or some combination thereof).
This report provides an illustration of some of the action steps that emerged from this process. (For the full list of recommendations, see the full report.) After each goal, we include some illustrative verbatim quotes from the strategy session participants.
Goal 1: Family caregivers’ physical, emotional and financial well-being will improve as a result of expanded awareness, outreach and education.
Consensus emerged around the need for a federal-level interagency awareness campaign promoting the value of family caregivers, enabling them to self-identify and supporting their ability to find the services and supports they need. This national campaign would involve a well-curated and widely promoted website and would create and disseminate culturally relevant materials aimed at supporting caregivers across all situations. In addition, specific efforts would target underserved populations such as persons of color, Asian-Pacific, Hispanic, LBGTQ, Indigenous and other caregiver communities. The awareness campaign would also have components specifically directed at employers and health care providers to educate them on the needs of family caregivers and the specific ways in which they can help support them. Additionally, there was support for the idea of creating community ambassadors/navigators to work with family caregivers in general and specifically to help reach excluded groups (e.g., minorities, rural areas) and help them navigate the resources that might be available.
“I’m concerned about the degree of shame that caregivers feel about ... accepting support. Any kind of public awareness campaign that is culturally sensitive and tailored to different communities could help ... normalize this experience and reduce the shame … and then enable caregivers to more readily accept the help that’s available.” [Health policy consulting firm]
“My vote for priorities would be along the lines of a large public education campaign … You can show different types of caregivers, all of us who are somewhat in a caregiver situation.” [Family caregiver advocacy organization]
Goal 2: Family caregivers are recognized, engaged and supported as key partners with providers of health care and LTSS.
Discussion focused on ways to strengthen the identification and engagement of family caregivers into health care and LTSS systems. This includes engaging the family caregiver in the care experience as the care recipient moves through the hospital, physician’s office, LTSS service system and so on. While there have always been challenges and disconnects in this regard, the COVID pandemic has further isolated caregivers from care recipients, particularly during hospital stays.
The Caregiver Advise, Record, Enable (CARE) Act, which has been enacted by several states, aims to help family caregivers when their care recipient is in the hospital and as they transition to home. It requires hospitals to:
- include the family caregiver’s name on the care recipient’s medical record;
- inform the family caregiver prior to discharge; and
- provide the family caregiver with education and instruction about adequate support post-discharge.
Several recommendations pertained specifically to the CARE Act, recommending ways to strengthen it and promote its wider adoption. The stakeholders felt that hospitals and health care systems are not properly staffed, trained or incentivized to identify family caregivers, engage with them, or assess and support their needs as intended by or in accordance with best practices. Some recommendations included the following:
- New reimbursement codes are needed for both private sector and public payers to cover time spent, engagement with and assessment of the needs of family caregivers.
- Health care providers should pilot the use of caregiver assessments to improve identification of which caregivers to support and how best to do so.
- Hospitals/health care systems should hire and train family caregiver engagement specialists.
- Hospitals should review and strengthen their protocols for incorporating the caregiver into the electronic medical record system.
- Hospitals, health systems, state hospital associations and research organizations should identify and promote best practices for family caregiver engagement.
“I think we need to enable physicians to be reimbursed for the time they spend providing instruction and support to family members and to make this a [reimbursement] code that just doesn't apply to licensed providers, but would apply to case managers, … working within primary care or another medical setting.” [Health policy research entity]
“That goes back to the clinician workforce education where we talk about how do we bring family caregivers into the conversation, being intentional about including them. … And listening intently to those caregivers … It's a real culture change … it's a paradigm shift in terms of how we're looking at including caregivers.” [Health system provider]
Goal 3: Family caregivers have access to an array of flexible person- and family-centered programs, supports, goods and services that meet the diverse and dynamic needs of family caregivers and care recipients.
Expanded federal funding was the action identified as having the most impact on achieving Goal 3, both with regard to strengthening existing programs and services as well as for creating new benefits under existing programs. Stakeholders supported creating funding opportunities to create a community ambassador program—modeled after the Ryan White Act—to better reach excluded populations and the entities that serve them. Expanded Medicare benefits for respite, adult day care and home modifications were also mentioned. Other suggestions for federal action included expanded family caregiver initiatives through increased funding for the Older Americans and Elder Justice Acts, the National Family Caregiver Support Program, the Lifespan Respite Care Program, the Alzheimer’s Disease Program Initiative and expanded access to Medicaid Home and Community-Based Services (HCBS).
Stakeholders also recommended states expand access to HCBS through Medicaid expansions and state-funded programs. Medicare Advantage and other private health plans should expand benefits for respite care and other services to support family caregivers. Other suggestions focused on encouraging states and lenders to provide low-interest loans and grants to foster the development of adult day services, along with encouraging states and municipalities to identify partners that could help them be more effective in developing supportive and low-income housing.
Several stakeholder sessions focused on the limited availability of direct care workers and the challenges faced in recruitment and retention. Specific action recommendations include the following:
- Create a federal government-led interagency task force to design a Direct Care Workforce development plan
- Improve pay for direct care work through increases to minimum/livable wages and payment under Medicaid
- Expand or create opportunities from state governments to pay family caregivers
- Invest in the direct care workforce through state and home care agencies and educational institutions by enhancing training and job advancement opportunities
“I'm growing … tired of the empty rhetoric about the heroic nature of [direct care] work. It's time to make some fundamental changes. That's not a crisis. A crisis is sudden and temporary and unexpected. We've been having this conversation for 30 years. Thirty years! It's not a crisis. It's a systemic failure.” [Advocate for direct care workers]
“Anything that’s directly related to getting cash and resources into the pockets of caregivers, that should always be our priority.” [Advocate for LGBTQ Elders]
“How do you recruit people? Pay them more than Starbucks. It’s not that complicated. In California, there are signs everywhere because of the workforce shortage. You can work at the smoothie place for $16 bucks an hour. Who’s going [to work for] a minimum wage of $14 an hour. Most IHSS workers in California are at $14 an hour. Why would I do this work that is so hard and so emotional, when I can go make a smoothie?” [Policy and workforce advocacy organization]
Goal 4: Family caregivers’ lifetime financial and employment security is protected and enhanced.
An estimated one in six employees is juggling work and being a family caregiver,[1] spending on average 20 hours a week providing a broad range of caregiver services.[2] The cost to both business and the individuals who provide care is significant. One study found that 70 percent of working caregivers reported at least one mental health symptom and a similar proportion mentioned having to decrease work hours, take unpaid leave or rearrange work schedules in order to fulfill their caregiver responsibilities.[3]
There was broad support for passing a federal paid Family and Medical Leave Act (FMLA), as well as for state-level initiatives. In addition, there was strong interest in expanding the FMLA definition of “family caregiver” to include “family of choice” and for the FMLA to apply to employers currently excluded under the law. Enabling family caregivers to receive direct pay for their caregiver role also emerged. Respondents also mentioned the need for financial relief for the out-of-pocket expenses associated with being a family caregiver, through tax credits or other mechanisms.
A major theme was identifying ways to encourage employers to adopt caregiver-friendly workplace practices, such as offering tax credits or other financial incentives to employers who adopt one or more types of caregiver-friendly workplace practices. Some of the specific workplace programs identified by stakeholders included flexible work schedules, employee resource groups (ERGs), benefits specific to caregiving such as an employer-paid care concierge service, coverage for respite, adult day care, caregiver training and the like. Some felt that, while paid leave or leave without pay is critically helpful to address a caregiving crisis, it is of limited value for most caregiving situations that have extended durations and require ongoing and changing support over time. To create a supportive workplace environment, training management to understand the needs, experiences and value of family caregivers was also seen as critical.
Finally, some stakeholders felt that a larger more structural and systemic change in our LTSS financing system is the best way to address the financial security of family caregivers, suggesting that stakeholders advocate for congressional action to support broadscale reform in the shape of an LTSS social insurance program.
“When it gets to the point of [FMLA] eligibility requirements, [I suggest] it not be restricted to biological or legal family members … the older adults could designate who is eligible to receive these supports ...” [Advocacy organization]
“I like the idea of that tax incentive to an employer. … Because ultimately, you're helping your employees who are going to work longer and be happier and provide better service. … So, tax credits are probably the way to do it.” [Health systems provider]
“Even though you offer more PTO or FMLA … people still need help with the challenge at hand. I can throw PTO at people all day … but I'm still trying to figure out how to help my family. [FMLA is] basically giving me more time to spend with them, but I still might be lost as a caregiver in terms of what I should be doing to help them … what resources to access.” [Employer support service provider]
Goal 5: Family caregivers are engaged stakeholders in a national research and data gathering infrastructure that documents their experiences, translates evidence into best practices, develops person- and family-centered interventions and measures progress toward the National Family Caregiver Strategy.
Recommendations for research actions were generated within all of the sessions. Priority topics for research pertained to
- demonstration of best practices for supporting working family caregivers;
- the return on investment to employers/business from various workplace strategies supporting employees in their caregiver roles;
- best practices for engaging family caregivers in the health care and hospital experience, as well as throughout the LTSS system;
- the outcomes associated with health systems that employ caregiver engagement and supports;
- data collection to better understand the current nature of the direct care workforce and how to recruit, retain and enhance it; and
- research on caregiver assessment tools and best practices for implementing them.
“I think it's fascinating to look at outcomes when it comes to screening tests. So, if you have caregivers in your organization taking care of a loved one at home, they’re more likely to have missed their mammogram this year or [their] colonoscopy in 10 years. So that's something that you can really look at that really matters to overall … utilization of preventive care.” [Large employer]
“We need to be able to quantify that. What are those health care costs for you the employer, if you don't provide supports for your caregiving employees? Because yes, they can be more costly. Overall, they shouldn't be, if you provide the right benefits.” [Large employer]
“[We need] research-based interventions and … studies that show [how] involving the caregivers, educating and empowering them, changes outcomes.” [Health care provider]
Conclusion
The RAISE council continues its work: creating implementation work groups to align around these action steps, develop priorities, create detailed work plans, collaborate with key players and begin to travel on this critical road map toward better support for family caregivers and the care recipients they support.
* The research for this work was made possible by the support of the RAISE Family Caregiver Resource and Dissemination Center at the National Academy for State Health Policy in collaboration with the U.S. Administration for Community Living, with generous funding from The John A. Hartford Foundation.
Statements of fact and opinions expressed herein are those of the individual authors and are not necessarily those of the Society of Actuaries, the editors, or the respective authors’ employers.
Eileen J. Tell, MPH, is the principal and CEO of ET Consulting LLC and a fellow of the UMass Boston Gerontology Institute. Eileen can be reached at eileenjtell@gmail.com.