Research Report

C O R P O R AT I O N

ESTHER M. FRIEDMAN, PATRICIA K. TONG

A Framework for Integrating

Family Caregivers into
the Health Care Team

T
here are currently about 53 million family and friends providing care and assistance to loved
ones in the United States, an increase of 9.5 million caregivers between 2015 to 2020 (AARP
and National Alliance for Caregiving, 2020). These family members, hereafter “family
caregivers” or “caregivers,” are a crucial element of the long-term care system. They provide
assistance with everyday activities, such as eating, bathing, dressing, driving, and taking medica-
tions (Amerigroup Corporation, 2014). The total value of long-term services and supports (LTSS)

KEY FINDINGS
■ Integrating family caregivers into a patient’s health care team has many benefits, yet these care-
givers face significant barriers to communicating and coordinating care with the health care team.

■ To better understand these barriers and identify ways to mitigate them, we reviewed the liter-
ature on the role of family caregivers in the coordination of care and conducted key informant
interviews with 13 experts from diverse stakeholder groups.

■ Barriers to integration fell under four themes: (1) identifying caregivers; (2) communication and infor-
mation-sharing; (3) time limitations and competing demands; and (4) trust and cultural barriers.

■ We also identified six policy areas in which initiatives could mitigate these barriers: (1) identify
and record information on family caregivers; (2) incentivize providers to engage with family
caregivers; (3) invest in programs that provide supportive services for family caregivers;
(4) expand access to and funding for care coordinators to support caregivers and connect
them to clinical information; (5) implement training programs for providers and caregivers
to facilitate effective communication; and (6) develop, test, and improve caregiver access to
technologies that foster caregiver-provider care integration and information-sharing.

■ Future work is needed to expand and assess policy approaches through stakeholder-
engaged consensus methods, assess the availability of evidence-based research, assess
each approach on metrics of feasibility and impact, evaluate approaches for their cost effec-
tiveness, and build consensus on how best to implement the most-promising choices.

■ Our study is among the first to focus in depth on integrating family caregivers into the health
care team by incorporating interviews with payers, providers, and caregiver advocates and
experts. The report is intended to spur a conversation about potential ways to promote inte-
gration and provide a blueprint for the next steps to implementation.
for older adults, including the estimated economic et al., 2017; Hengelaar et al., 2018) and also a better
value of typical unpaid family care, exceeded $400 bil- quality of life, well-being, and mental health (Bass,
lion in 2011. Care provided by family members and Clark, et al., 2003; Bass, Judge, et al., 2013; Callahan
friends accounted for more than half of this amount et al., 2009; National Academies of Sciences,
(Congressional Budget Office, 2013). Engineering, and Medicine, 2016; Guay et al., 2017).
Family caregivers have direct and frequent access Enhancing coordination between family caregivers
to loved ones with caregiving needs: More than and the formal care team can improve care planning
one-third of care recipients live with their family by integrating caregiver expertise into patients’ plan
caregivers and 55 percent of caregivers visit their of care and preparing family caregivers to be surro-
care recipients more than once a week (Weber-Raley gate decisionmakers at the end of life (Bruening et al.,
and Smith, 2015). These regular interactions allow 2020; Wolff et al., 2016).
family caregivers to monitor changes in health and Despite these benefits, caregivers are often
care needs on a more regular basis than would be treated as secondary members of the care team (e.g.,
possible for formal health care providers. It is thus primarily communicating with health care teams
not surprising that including family members in care through patients instead of having direct access to
collaboration improves patients’ access to services the team itself). Given the established benefits of col-
and reduces patients’ unmet needs (Griffin et al., laboration between a family caregiver and the formal
2017; Samus et al., 2014). Other established benefits in health care team, improved integration is warranted
involving family caregivers include better quality of but is not currently common. Our study aims to start
care, increased safety (Callahan et al., 2009; Meyer et the conversation about ways to better integrate family
al., 2018; Wolff et al., 2010) and improved quality of caregivers into health care teams.
life for care recipients (Callahan et al., 2009; Samus et The goal of this study is to identify promising
al., 2014) and also delayed patient institutionalization policy directions and provide a blueprint for assessing,
(National Academies of Sciences, Engineering, and developing, and implementing policies to improve
Medicine, 2016; Samus et al., 2014). the integration of family caregivers into health care
Including family caregivers in the formal care teams. We focus on family members caring for adults
team also offers benefits for the caregivers them- who need help with everyday activities (e.g., veterans
selves, such as increased mastery of caregiving, con- with disabilities, adults with intellectual disabilities or
fidence, and self-efficacy (Callahan et al., 2009; Guay developmental disabilities, and adults with functional
limitations or complex chronic conditions).
We broadly define family caregiver integration,
which includes communication, collaboration, and
coordination with providers, individuals, or orga-
Recent changes nizations that deliver care or health care services
or help coordinate care for people with caregiving
in the U.S. health needs. We define health care team as doctors, nurses,
social workers, care coordinators, and private-sector
care system and health and care service providers.

payment models have Recent changes in the U.S. health care system
and payment models have increased opportunities

increased opportunities to integrate family caregivers into care teams. For

example, the growth in value-based payment models
to integrate family (Muhlestein et al., 2018), which hold a health care
delivery system and payers accountable for both the
caregivers into care quality and cost of care, has led to a reassessment
of which factors improve quality and provides new
teams. opportunities for recognizing the work of caregivers.

2
An increased focus on patient-centered care encour-
ages patients’ involvement in their own care and
could be expanded to include family members in An increased focus
decisionmaking, yielding a more family-centered care
focus (National Academies of Sciences, Engineering, on patient-centered
and Medicine, 2016). Finally, the recent expansion
of supplementary benefits in Medicare Advantage care encourages
Plans to cover caregiver support demonstrates that
payers are also recognizing the importance of family patients’ involvement
caregivers.
Other efforts are underway to better integrate
in their own care and
family caregivers into health care teams. For example,
a National Academies of Sciences, Engineering, and
could be expanded to
Medicine report on family caregivers has helped to include family members
raise awareness of caregivers’ needs and potential ways
to support them (National Academies of Sciences, in decisionmaking,
Engineering, and Medicine, 2016). Most states have
passed and implemented the Caregiver Advise, yielding a more family-
Record, Enable (CARE) Act, which requires hospitals
to record the name of family caregivers for a patient centered care focus.
in hospital records, to consult with caregivers when
a patient is to be discharged from the hospital, and to the Centers for Medicare & Medicaid Services (CMS)
provide instructions about medical tasks that the care- began providing a waiver for homebound status during
givers will need to assume after a patient’s release. In COVID-19 that allows for more coverage of home-based
addition, the Recognize, Assist, Include, Support, and care (Volp, Diamond, and Shrank, 2020).
Engage (RAISE) Family Caregivers Act, which became
federal law in 2018, created a council of diverse infor-
mants charged with developing a national strategy and Our Approach
plan to support family caregivers.
Our work has three basic aims: (1) provide a more-
This work is also timely because the coronavirus
targeted and in-depth analysis of issues around care
disease 2019 (COVID-19) pandemic makes receiving
integration between family caregivers and health care
care in institutions or from formal personal caregivers
providers, including promising policy directions for
or home health aides less feasible and potentially risky.
improving family caregiver collaboration with the
The situation in nursing homes is particularly well
care team; (2) identify a set of policy areas relevant to
known: COVID-19 has run rampant in nursing homes
multiple informants; and (3) provide recommendations
and other institutional settings, generating calls to
for expanding, assessing, selecting, and implementing
revamp the formal system of LTSS with a combination
relevant policies. We used a mixed-methods approach:
of funding, regulation, and new strategies for care that
a review of topic-related literature, policy reports, and
supports a variety of institutional and home-based
websites to identify relevant research, policy discus-
care options (Werner, Hoffman, and Coe, 2020).
sions, and programs; interviews with three important
One recommendation for increasing support for
informant groups (caregiver advocacy organizations,
home-based care is self-directed LTSS, which would
payers, and providers); and case studies of existing
permit patients to employ family members as caregivers
efforts that support the integration of family caregivers
(Ujvari et al., 2020). Several state Medicaid programs
into care teams. Figure 1 shows how we identified key
are temporarily allowing family caregivers to receive
themes and case studies from interviews and literature.
payment for direct care services during the COVID-19
pandemic (Fox-Grage, Teshale, and Spradlin, 2020);

3
 • The literature review provides an overview of (National Academies of Sciences, Engineering,
relevant studies from the academic community and Medicine, 2016; Sperber, 2019).
and highlights policy discussions about the role • Interviews were conducted with 13 key
of family caregivers in the coordination of care. informants selected to represent the per-
The objectives of the review were to identify spectives of three groups: caregiver experts
potential benefits from integrating family care- and representatives (five interviews); payers,
givers into the care team, identify barriers and i.e., insurance companies (four interviews);
facilitators to care coordination involving fam- and both clinical and direct service pro-
ily caregivers, and identify innovative programs viders (four interviews). We chose these
that connect family members to the health informant groups because each would need
care team. The review was meant to be broadly to be engaged to institute effective policy to
inclusive. To that end, we took a two-pronged improve care coordination; thus, their views
approach to identifying relevant literature. on the barriers and facilitators to care coordi-
Internet searches using common search engines nation with family caregivers are crucial. To
were conducted to identify relevant academic choose the interviewees within each group,
articles or reports. We also reviewed the we reached out to key informant groups (e.g.,
reference list of two recent works that exam- well-known caregiving advocacy groups) and
ine integrating caregivers into a formal care used contacts from long-term care experts at
team to identify relevant academic articles and the RAND Corporation and contacts of the
recent papers citing these foundational works sponsor, Seniorlink. Informants were invited
to participate via e-mail; more than 80 percent
responded to our emails and agreed to be
FIGURE 1
interviewed. Telephone interviews were con-
ducted by interviewers using a semistructured
Analytic Approach
discussion guide with a notetaker present. The
interview guide covered a variety of topics
Interviews Literature review
aimed at each key informant group asking
about: (1) current state of caregiver integra-
tion; (2) barriers to integration; (3) policy
actions to enhance integration and facilitators
to implementing them; and (4) benefits to
patients of care integration. Interviews were
audio-recorded with the subjects’ consent,
Reviewed and eligible respondents received a $100
Analyzed literature on honorarium for their participation. The study
data from 13 integrating family
informant and formal care was approved by the RAND Human Subjects
interviews and innovative Protection Committee.
programs
• Themes were identified from the literature
review and interviews. After completing
the interviews, we analyzed the interview
data and the information from the litera-
Identified Identified ture review. The barriers to integration fell
4 4 naturally into four categories, as shown in
key types of barriers innovative
and potential programs for Figure 2. We reviewed the interview notes
solutions case studies and audio recordings to identify facilitators to
overcoming each of the barriers. These facil-
itators were used as the basis for identifying

4
FIGURE 2
Barriers to Integrating Family Caregivers into Health Care Teams

Topic Barriers

Identifying caregivers
• Family members do not self-identify as caregivers.
• Care recipients do not identify family members as caregivers.
• Caregiver information is often missing from patient health records.
• Information for multiple caregivers is not typically recorded.

Communication and • Family caregivers do not have the information or education needed to carry out caregiving tasks.
information-sharing
• Family caregivers do not have access to providers or patient health records.
• Family caregivers do not understand medical terminology.
• Clinical providers do not communicate with each other.
• Privacy restrictions limit who has access to a patient’s medical information.

Time limitations and

competing demands • Clinical providers have limited time and resources to engage with caregivers.
• Health care systems do not provide ways to reimburse providers for time spent coordinating care
with family caregivers.
• Family caregivers have limited time and resources to engage with providers.

Trust and • The health care team has difficulty interacting with family caregivers from different cultural
cultural barriers backgrounds.
• Terminology and language barriers in which family caregivers do not understand medical
terminology and/or are non-native English speakers.
• Certain communities lack trust in the health care system.

groups of potential policy areas. We did not the academic literature. We selected a com-
require barriers and facilitators to be men- bination of programs to capture the diversity
tioned by a minimum number of key infor- of informant groups engaged in these efforts.
mants to be included in the analysis. We included one provider program targeted
• Case studies were used to take a more to family caregivers of veterans, one program
in-depth look at four efforts that informants offered by a payer, one program targeted to
have implemented to promote the integration family caregivers of patients with dementia
of caregivers. We selected these case studies run by an academic research community,
because the programs explicitly promoted and one private company effort that leverages
care collaboration between family caregivers technologies and other solutions to provide
and health care teams, and detailed informa- care and integrate caregivers.
tion about each program could be obtained by We frame our discussion of results around the
searching webpages, from the interviews, and types of barriers reported in the informant interviews.

5
“Often, even if there’s a place to put something in
the medical record, there’s . . . only one space for
one name; and the reality is, people have multiple
caregivers.”
We begin by describing barriers to family caregiver al., 2013; Sperber et al., 2019), and it was also high-
integration. Next, we discuss potential ways to over- lighted in our interviews. Key informants noted that
come these barriers and group them into six policy the team needs to identify the caregivers to connect
areas. We then describe other considerations that were them with the care team. This is challenging for
raised in the interviews but fell outside the scope of several reasons. Several informants noted that some
the barriers and facilitators discussion. Next, we turn individuals do not self-identify as caregivers; rather
to the case studies and describe which barriers each they view caring for a loved one as something they
program addresses and how it does so. We conclude by simply do as family members. Similarly, care recipients
providing recommendations for next steps. themselves may not think of their family members
as caregivers. In addition, the health system itself has
structural limitations, such as the lack of a standard-
Barriers to Integration ized way to record caregiver information on patient
To inform potential policy approaches, we began our health records and a limited ability to change this
analyses by grouping barriers to family caregiver information over time. Another problem is that the
integration. Barriers from both the interviews and system is not equipped for the complexity of caregiv-
the literature review were grouped in four primary ing arrangements. As noted in one interview, “Often,
themes: (1) identifying caregivers; (2) communication even if there’s a place to put something in the medical
and information-sharing; (3) time limitations and record, there’s . . . only one space for one name; and
competing demands; and (4) trust and cultural bar- the reality is, people have multiple caregivers . . . so the
riers. These barriers are summarized in Figure 2 and ability to get a sense of that is really limited.” Another
discussed in more detail in this section. The themes concern raised by the key informants comes from the
and specific barriers identified in the literature were patient’s perspective: Patients may resist having family
similar to those noted in the interviews; however, members involved in their care. As one key informant
informants provided richer context for understand- explained, “The autonomy of the older adult, their
ing barriers and were the primary source for identi- desire to want to . . . be the captain of their own ship .
fying potential solutions. . . can be a challenge or a barrier for health profession-
als to engage with family caregivers.” Six out of the 13
key informants discussed identifying caregivers as a
Identifying Caregivers barrier to integrating family caregivers into the care
One of the fundamental barriers to integrating family team: four caregiver experts/advocates, one payer, and
caregivers into the formal care team is the difficulty one provider.
that care teams faced in identifying caregivers. This
barrier has been identified in an extensive body of Communication and Information-Sharing
work (National Academies of Sciences, Engineering,
and Medicine, 2016; Grossman, Zak, and Zelinski, Another common theme emerging from both the
2018; Meyer et al., 2018; Peterson et al., 2016; Reuben et literature and interviews relates to communication
and information-sharing. The goal for integrating

6
caregivers into the care team would be full integration the caregiver has no visibility in that world.” When
in which communication can flow seamlessly in all describing the ability of family caregivers to commu-
directions—from the health care team to caregivers, nicate with providers, one key informant noted, “The
from caregivers to the health care team, among caregiv- most isolating experience that an older person and a
ers, and among different types of providers. The liter- family caregiver can have is when they feel they have
ature notes that even health care teams that do include no ability to communicate effectively with the health
caregivers face barriers to fully coordinating a patient’s care delivery system.”
care with their caregivers; these barriers include a lack With regard to information-sharing, several
of communication skills among both caregivers (Moore, informants mentioned how family caregivers do not
2008; Moore and Cook, 2011) and providers (Moore, always have the means to share information with
2008; National Academies of Sciences, Engineering, and providers even though caregivers have firsthand
Medicine, 2016; Schulz and Czaja, 2018; Sperber et al., knowledge of a patient’s condition and may notice
2019; Washington et al., 2011). The security of patient subtle changes in health that clinical providers could
health information (Schulz and Czaja, 2018; Sperber et miss. As one key informant described, “There are
al., 2019) and compliance with the Health Insurance things that the family caregiver is going to witness
Portability and Accountability Act (HIPAA) (Nadash, that [providers] will never have insight to that is
Silverstein, and Porell, 2019) are also discussed in the directly impacting that person’s health and their
literature as barriers that prevent effective communi- quality of life.” Moreover, key informants described
cation and information-sharing between providers and a lack of information or tools necessary to fully
family caregivers. understand or carry out caregiving responsibilities.
Key informants expanded on this theme by As one key informant explained, “Information and
describing specific scenarios that prevented effec- education . . . [are] the biggest tools that caregivers
tive communication and information-sharing. For need.” Family caregivers may not get the information
instance, when describing the ability of providers they need about a loved one’s diagnosis or treat-
to communicate with family caregivers, informants ments. One reason could be that they lack access to
described how caregivers may be bombarded with clinical providers or patient health records. Multiple
too much information and may not be equipped or informants discussed how the timing of information
have time to sort through all the resources to deter- is also important. The types of information family
mine the most relevant information. Key informants caregivers need depend on a patient’s condition, and
also discussed medical terminology as a barrier providing what caregivers need when they need it can
for caregivers when trying to communicate with be challenging. As one informant said, “The timeli-
the care team. One informant said, “Health care ness of the interventions and supports . . . the sudden
providers, even when they are really focused and onset versus gradual—we should learn about those
trained in health literacy, they still speak in health trajectories, and we should know when somebody’s
speak. . . . There’s just this really different paradigm going to need the information and supports.”
of language construction and communication [and]

“The most isolating experience that an older

person and a family caregiver can have is when
they feel they have no ability to communicate
effectively with the health care delivery system.”

7
 focuses on this barrier from the perspective of provid-
ers, noting the lack of time for engagement with caregiv-
“You can get this ers (Coleman, 2016; Peterson et al., 2016; Washington et
al., 2011; Sperber et al., 2019) and the lack of compensa-
sinking feeling when tion and financial incentives for engaging (Kaiser and
Kaiser, 2017; Schulz and Czaja, 2018).
you’re having a busy Informants independently identified this theme,

day and you walk into describing it in more detail from both provider and
caregiver perspectives. For instance, informants
a patient’s room in the described the pressures on providers to address
patient concerns as quickly as possible, which limits
hospital and you see a their time to engage with family caregivers. As one
provider described:
bunch of family around You can get this sinking feeling when you’re
having a busy day and you walk into a patient’s
and you’re . . . worried room in the hospital and you see a bunch of
family around and you’re . . . worried it’s going
it’s going to take [too to take [too much] time. . . . [We need to think
about] shifting that mentality . . . to [recognize]
much] time.” these are actually the people that are going to
help you . . . this is your support as well.
The interviews surfaced two key barriers to Informants also noted that there have been
communication from the provider’s perspective: (1) a shifts in the U.S. health care system to support
fragmented health system in which providers do not interactions between providers and caregivers, such
always communicate with each other about a patient’s as the growth in value-based payment models and
care and (2) privacy restrictions and security standards person-centered care and the addition of nonmedi-
from HIPAA. A fragmented health system means that cal benefits to Medicare Advantage Plans. However,
providers may not be aware of all the treatments and these system-level changes that allow for better
health conditions of a particular patient, hampering integration of family caregivers are slow, incremental,
a provider’s ability to provide correct and necessary and vary across different health care delivery sys-
information to family caregivers. All informant groups tems. Moreover, key informants felt that clinicians
cited privacy restrictions and security standards from may bear too much of the responsibility for engaging
HIPAA as barriers because they limit to whom provid- with family caregivers. “There is probably an over-
ers can speak about a patient’s care. These factors are reliance on physicians as being the lever . . . [and]
especially problematic if patients cannot communicate they are not trained to engage in that kind of shared
their preferences about who should be involved with decisionmaking . . . we ask them to do a lot,” one key
their care and who requires secure storage of protected informant said.
health information. All 13 key informants mentioned One way to identify caregivers is with a caregiver
communication difficulties and inadequate informa- assessment, which is “a systematic process of gathering
tion as barriers to caregiver integration. information about a caregiving situation to identify
the specific problems, needs, strengths, and resources
of the family caregiver, as well as the ability of the
Time Limitations and Competing
caregiver to contribute to the needs of the care recip-
Demands ient” (Feinberg and Houser, 2012). However, one key
Both clinical providers and family caregivers have time informant felt that it was unrealistic for clinicians to
limitations and competing demands. The literature conduct caregiver assessments on all family members

8
involved in a patient’s care because current health care thinking about the different cultural norms and how
delivery systems do not have workflows or reimburse- people treat their elders or how they view caregiver[s].”
ment mechanisms to allow for such interactions. Language was cited as a two-sided barrier: Not all
Family caregivers also have limited time to family caregivers are native English speakers or are
determine how to reach out to and talk with the familiar with medical terminology. These barriers can
health care team. The care system can be difficult cause miscommunication between family caregivers
for caregivers to navigate, and caregiving can be and the health care team and make caregivers wary of
a full-time job. Caregivers often have competing reaching out if they feel that they cannot adequately
demands, such as employment obligations, their express their needs or that the health care team does
own children, or their own health issues. As a result, not understand their concerns. Trust and cultural
finding time when providers and family caregivers barriers were noted by six out of the 13 key informants:
are both available to discuss a patient’s care could be three caregiver experts/advocates and three payers.
difficult. Social determinants of health, such as a lack
of housing or inadequate transportation on the part
of the patient and family caregiver, can also serve as Identifying Policy Areas and
barriers. Eleven of the 13 key informants described Ways to Facilitate Implementing
time limitations and competing demands as a bar- Policies
rier: five caregiver experts/advocates, four payers,
We also asked key informants about ways to address
and two providers.
the identified barriers, including through policy,
technology, or other potential action items that could
Trust and Cultural Barriers facilitate the integration of caregivers into the health
care team. In Figure 3, we list the facilitators identi-
The literature reviewed touches briefly on trust and
fied from the interviews (bulleted information) and
cultural barriers to integrating caregivers into the for-
group them into six broad policy areas. We report
mal care team. Some topics noted in the literature are
informant-identified facilitators in the figure as they
disagreement among medical professionals about how
were described to us; we did not confirm that they
much to involve family caregivers and the amount of
were the optimal or even appropriate approaches
time it takes to build trust between caregivers and the
for addressing barriers. At the end of this report, we
formal care team (Hengelaar et al., 2018).
Barriers falling under this theme were elaborated
on in interviews. Multiple informants noted the diver-
sity of family caregivers and the need for the health
care team, including clinical providers, care coordi-
nators, and other professionals assisting with care, to “The diversity piece is
understand the cultural backgrounds of both patient
and caregiver. For example, compared with white fam- so critically important . . .
ily caregivers, family caregivers in minority commu-
nities are more likely to experience strain and worry
particularly in some
about making a mistake in care (Reinhard, 2019),
indicating how important it is for this group to be
diverse communities
supported. As one key informant stated, “The diversity
piece is so critically important . . . particularly in some
that for really good
diverse communities that for really good reasons don’t reasons don’t
necessarily trust the health care system.” Another
key informant emphasized the importance for the necessarily trust the
formal health care team to communicate with family
caregivers in a way that addresses “cultural sensitivity, health care system.”

9
FIGURE 3
Policy Areas and Facilitators Derived from Interviews

Policy Areas Barriers Addressed Stakeholders

Identify and record information on family caregivers. Identifying caregivers; Policymakers, payers, providers,
Interviews
• Make asking for a patient's permission communication and information- technology sector
1
to speak to family members a routine part of care. sharing
• Find ways for providers to learn more about
day-to-day life of patients and who provides care.
• Leverage opportunities to identify caregivers
during advanced care planning.

Incentivize providers to engage with family Time limitations and Policymakers, payers
caregivers. competing demands
2
• Explore billing options to cover time engaging with
caregivers.
• Explore other reimbursement policies that would
facilitate provider engagement with caregivers.

Invest in programs that provide supportive services for Time limitations and Policymakers, payers
family caregivers. competing demands
3
• Implement routine assessments.
• Pay family caregivers for time performing caregiving tasks.
• Increase family caregiver supports covered by
supplemental benefits in Medicare Advantage Plans.
• Promote paid leave policies.

Expand access to and funding for care coordinators Communication and information- Policymakers, payers,
Interviews
to support caregivers and connect them to clinical sharing; time limitations and providers, technology sector
4
information. competing demands; trust and
• Expand access to all patients with care needs. cultural barriers
• Provide opportunities for caregivers to connect
with care coordinators to assess their own needs.

Implement training programs for providers and Communication and Policymakers, payers,
Interviews
caregivers to facilitate effective communication. information-sharing; trust and providers
5
• Implement training programs to improve cultural barriers
communication between providers and caregivers.
• Require sensitivity training for providers to
enhance communication with diverse populations.

Develop, test, and improve caregiver access to Identifying caregivers; Policymakers, providers,
Interviews
technologies that foster caregiver-provider care communication technology sector
6
integration and information-sharing. and information-sharing; time
• Increase use of shared access features on limitations and
patient portals. competing demands
• Develop system to record family caregiver
information in EHRs.
• Provide access to asynchronous technologies,
such as texting.
• Increase use of telemedicine and virtual clinics.
• Learn from and evaluate existing technologies
that can promote care integration.

10
describe next steps for expanding, assessing, selecting, Although it may seem standard procedure to
and implementing interventions in these policy areas. identify caregivers, such an effort is not currently part
We also identify which informants would be of routine care and does not happen in all states or in
involved in implementing solutions: all settings (with the CARE Act, this is now happening
• policymakers, which include individuals who in hospitals in most, but not all, states). Additionally,
influence policy (e.g., government officials, opportunities to identify multiple caregivers are limited.
advocacy groups, the research community) We heard several potential ideas from key infor-
• payers, which include public and private mants about how to improve caregiver identification
payers, such as insurance companies, state and make it part of routine care. For example,
Medicaid programs, and CMS • asking for a patient’s permission to speak
• providers, which include individuals or orga- to family members and learning about the
nizations that provide direct care or health caregiving routine. This should be done along
care services or help coordinate care for people with capturing or confirming basic demo-
with caregiving needs (because this group graphic information so that recording care-
is broad, in our discussion, we highlight the giver information does not become a burden
specific subgroups of providers for whom the on clinical providers.
policy area is most relevant) • incorporating elements of caregiver assessment
• technology sector, which includes private into a health care encounter (potentially to be
companies that develop and implement conducted by members of an interdisciplinary
technologies that could facilitate care team working with primary providers) that
coordination. enable clinical providers and care coordina-
Policy Area 1. Identify and record informa- tors to learn more about the day-to-day life of
tion on family caregivers. One caregiver expert and patients and their care routine. The goal is to
advocate stated: inform providers about who is participating
in a patient’s care and what tasks each person
I think a lot of the onus needs to be on the is doing. “I’m sure we can improve upon the
health care sector . . . the question always has to
assessments that exist with regard to what a
be asked, “Do you have someone that looks after
potential caregiver can do and what they want
you or cares for you or that you’re in regular
contact with who does things for you?” And
and are willing and able to do so that we can
then assume that that person is probably going better home in on what role an individual
to need some level of information, education, might have as a member on that care team,”
and perhaps some type of supports so that the one key informant said.
caregiver does not somehow get left out of the • leveraging opportunities during advanced
equation and left holding the bag, so to speak. care planning with primary care physicians
by asking a patient whether someone in his

“I think a lot of the onus needs to be on the health

care sector . . . the question always has to be
asked, ‘Do you have someone that looks after you
or cares for you or that you’re in regular contact
with who does things for you?’ ”
11
 or her family should be involved in those Several informants stated that systemwide reform
conversations. would be needed to successfully integrate family
Implementing these types of approaches would caregivers into the care team because reimburse-
require having precautions in place to ensure that ment mechanisms that reinforce integration do not
regulations related to patient privacy are met, allow currently exist and would need to be implemented.
patients to decide how much information to share As one key informant stated when describing what
with family members, and give patients the ability to it would take to integrate family caregivers into the
easily rescind access to their patient health informa- care team, “I think it’s hard to overstate what a fun-
tion if they so choose. This policy area addresses the damental change this is for the health care system. To
barrier themes of identifying family caregivers and do this really requires . . . redesign and not incre-
communication and information-sharing by finding mental change and really requires us to think about
ways to identify family caregivers that would also where and how we deliver care.” Another stated
enable these caregivers to discuss with providers the that time-based codes to bill time spent with family
treatments and care planning for their loved ones. caregivers would help to overcome perceived barriers
This policy area is relevant to all informants, from clinicians because they will feel their efforts are
including providers, payers, policymakers, and the recognized.
technology sector. This policy area is relevant to However, another key informant perceived lim-
policymakers who could require new procedures and ited time rather than billing as the key issue, suggest-
practices to be put in place by payers and providers ing that providers might not welcome new billing
to identify and record family caregiver information. options and that other reimbursement policies may
This policy area is also relevant to payers and provid- be needed. This was echoed by another informant
ers who would have to institute these new policies. who felt that a more effective strategy to increasing
Finally, health information technology providers provider collaboration with family caregivers would
can partner with health systems in platform design be to promote value-based health care delivery sys-
to facilitate the ability to capture and use caregiver tems rather than create payment codes for time spent
information. with caregivers in existing fee-for-service systems
Policy Area 2. Incentivize providers to engage that reimburse providers on the quantity of care.
with family caregivers. Informants described time Value-based health care systems reward providers on
constraints that make it difficult for providers to the quality of care, thereby incentivizing providers
engage with caregivers in a meaningful way, and they to coordinate care with family caregivers if doing so
suggested several potential solutions. One suggestion would improve patient health outcomes.
was implementing payment models that allow pro- Actions in this policy area could be implemented
viders to bill for time spent engaging with caregivers. by policymakers and payers. The actions are relevant
to the barriers of time limitations and competing
demands—in this case, the limited time (and ability
to bill for such time) available to clinical providers.
Policy Area 3. Invest in programs that provide
One suggestion was supportive services for family caregivers. Increasing

implementing payment supports for family caregivers can reduce the bur-
den on caregivers and give them time to coordinate

models that allow with the health care team. Increasing support for
family caregivers can be done by increasing funding
providers to bill for time for existing programs that have been shown to be
effective, supporting new research to determine the
spent engaging with effectiveness of existing programs, or supporting the
development of new programs. Other studies have
caregivers. recommended policy options to encourage more

12
and better supports for family caregivers, mainly as on clinical care coordination after an episode of
a mechanism for reducing caregiver burden and facil- care), care navigators (who work in a nonclinical
itating better care (National Academies of Sciences, setting), case managers (who work in a nonclinical
Engineering, and Medicine, 2016; Reinhard, 2019). or combination clinical and nonclinical setting), or
One of the key informants we interviewed said a combination of these positions depending on the
that another benefit to caregiver supports was “tak- setting, employer, and role (e.g., Managed Care versus
ing one more thing off of a caregiver’s plate” and free- Dual-Medicaid and Medicare plans versus hospital
ing up caregiver time—one of the critical barriers to discharge unit). According to one key informant, care
caregivers’ being able to collaborate with providers. coordinators serve as the “bridge and connection
Facilitators included from the medical world back to daily living” for fam-
• implementing routine assessments of family ily caregivers and “having payers who fund meaning-
caregivers to provide clinical providers and ful care coordination and care navigation has a huge
care coordinators with information about impact on a caregiver’s life.”
what family caregivers need and how to best This policy area is relevant to both clinical and
support them nonclinical coordinators of care. The payers we spoke
• expanding programs that pay family care- with discussed how they have begun to use care coor-
givers for their caregiving tasks, an approach dinators to connect family caregivers to clinicians and
already being taken for certain Medicaid health care information, but these care coordinators
and low-income populations (e.g., cash and are generally available only for the highest-risk patients.
counseling) Efforts in this policy area would expand access to
• increasing family caregiver supports covered by care coordinators for all patients with care needs,
supplemental benefits in Medicare Advantage provide opportunities for caregivers to connect with
Plans to alleviate the caregiver workload care coordinators separately to help meet their needs,
• promoting paid leave policies to help working and allow for interaction with clinicians and nurses
family caregivers reduce potential income loss as needed. Care coordinators would facilitate the
when they take time off to care for their loved caregiver’s engagement with the health care team on
ones. behalf of and alongside clinical providers.
This policy area could also be expanded to cut
This policy area is relevant to policymakers and
across informant types. Although care coordinators
payers. Actions in this policy area would address barri-
tend to liaise between insurance companies and
ers related to time limitations and competing demands.
health care providers, care coordinators could also
The suggested solutions can help give caregivers the
be employed by the private sector. For example, the
necessary time and resources to provide quality care.
Policy Area 4. Expand access to and funding
for care coordinators to support caregivers and
connect them to clinical information. Having a
single designated person who connects caregivers to
the training and clinical resources they need can pro-
“[H]aving payers who
vide valuable information, improve communication, fund meaningful care
and save time for both caregivers and the care team.
As one key informant stated, “Probably the greatest coordination and care
nonmedical service that could be offered . . . is a care
coordinator/care navigator that is a real person that navigation has a huge
somebody can call that is inside the health system
and can really help the family caregiver navigate the impact on a caregiver’s
world that their loved one is in.” Care coordinators
include care managers (who are focused primarily
life.”

13
 information in ways that a family caregiver can
easily understand. Cultural and sensitivity training
Training programs on can help these providers better coordinate care with
diverse family caregivers.
effective communication Even if opportunities for communication are
improved, barriers can occur in the conversations
can give clinical themselves. One key informant emphasized the

providers and care importance of “making sure providers are training

their staff on family caregivers and making sure that
coordinators the skills they’re including family caregivers into processes.”
Given the diversity of caregivers’ cultural back-
to convey complicated grounds and needs, it is essential for clinical providers
and care coordinators to learn how to communicate
clinical information with different types of caregivers. Training programs
aimed at learning those communication skills need
in ways that a family to be developed, and existing programs, such as the
Department of Veterans Affairs’ (VA’s) Campaign for
caregiver can easily Inclusive Care described in the case study section (see
Case Study Box 1), need to be assessed for efficacy.
understand. This policy area is most relevant to
providers—provider institutions that would need to
technology sector has begun to provide access to care implement solutions and clinical providers and care
coordinators in the form of in-home case managers coordinators who would participate in the train-
and virtual assistants. Because care coordinators can ing. In addition, policymakers may be able to help
be made available in different settings (e.g., hospitals, develop programs and enforce adherence, and payers
nursing homes) and through different informants may be able to require providers to participate in
(such as insurance companies and providers), this these training programs. The themes of (1) commu-
policy area is relevant to policymakers, payers, the nication and information-sharing and (2) trust and
technology sector, and providers—provider institu- cultural barriers are among the barriers that could be
tions that might expand their use of care coordina- addressed by initiatives in this policy area.
tors and clinical providers who might benefit from Policy Area 6. Develop, test, and improve
having care coordinators as key contacts for family caregiver access to technologies that fos-
caregivers. This policy area can potentially address ter caregiver-provider care integration and
several barriers mentioned in the interviews: improv- information-sharing. This policy area relates to
ing communication and information-sharing among increasing access to, improving, and developing
care team members; easing time limitations and technologies for both providers and caregivers.
competing demands for both clinicians and family Family caregivers need access to patient health
caregivers; and offering the appropriate training for information and mechanisms for sharing informa-
care navigators to help improve trust and reduce tion with clinical providers and care coordinators.
cultural barriers (which would promote cultural EHRs are one way to share information, but family
competence). caregivers do not always have access to this informa-
Policy Area 5. Implement training programs tion. Suggestions for addressing this barrier include
for providers and caregivers to facilitate effective increasing the use of shared access features on patient
communication. Training programs on effective portals and developing a system to record informa-
communication can give clinical providers and care tion about family caregivers, such as documentation
coordinators the skills to convey complicated clinical of caregiver name, relationship to caregiver, contact
information, and primary caregiving responsibilities.

14
Expanding access to EHRs and such information as This policy area is relevant to the technology
clinicians’ notes could provide valuable information sector, policymakers, and providers. The technol-
and opportunities for caregiver-provider communi- ogy sector will need to develop and improve these
cation. As one key informant stated, “When you give technologies and facilitate the integration of care-
people information and allow them to log into an giver and provider technologies. There is a need for
electronic health record . . . [it] improves their ability technology and health care companies that are, or
and their likelihood of interacting as part of the could be, developing care coordination tools to focus
health care team.” on the needs of end users and to include caregivers
On the caregiver side, key informants described in the conversation as new tools are developed. The
the need to develop and test technologies that sup- technology sector may also help to develop EHR
port caregivers and foster caregiver-provider care functionality to include information about caregiv-
integration and information-sharing. One key infor- ers. It will also be crucial for policymakers to invest
mant noted that “we live in a smartphone world,” in evaluating these products to determine how they
and technology is the easiest way to communicate affect patient and caregiver outcomes and the costs of
and share information. Technology could provide a integrating these products across payers, providers,
platform for communication that could occur when patients, and caregivers. Providers are also important
family caregivers have downtime, such as through informants, because these tools will need to be imple-
texting or asynchronous messaging. mented by provider organizations and may be used
Promising technologies discussed in our inter- to connect clinical providers and care coordinators to
views and case studies involved apps and digital patients and caregivers.
technologies that connect caregivers to one another New technology solutions can also be coupled
and to care teams. One key informant suggested with several of the policy suggestions noted earlier.
leveraging technologies that caregivers might already They have the potential to improve communication
use and asking “those companies to build out care- and information-sharing for all informants, from
giving workstreams” as opposed to developing new caregivers to payers to providers. The right kinds
technologies that caregivers would have to learn to of technologies, such as asynchronous communi-
use. Moreover, one key informant suggested increas- cation methods, can also free up valuable time and
ing the use of telemedicine and virtual clinics so that resources for both caregivers and clinical providers.
care team members, including family caregivers, Technologies can also be used to improve caregiver
could share information in a secure environment. identification and facilitate access to care managers.
Key informants also mentioned that some home care
agencies use technologies that encourage professional
caregivers (e.g., direct care workers or home health Other Observations from the
aides) to provide daily electronic reports about their Interviews
patients so health changes can be monitored and
Several important themes emerged in the interviews
interventions can be deployed when necessary.
that relate to specific populations with unique needs.

“When you give people information and allow

them to log into an electronic health record . . .
[it] improves their ability and their likelihood of
interacting as part of the health care team.”
15
“I think a lot of the younger caregivers have been
left out of the conversation, so we don’t really
have a lot of information about what kind of
supports they need.”
Several key informants suggested investigating what the family caregivers and the people to whom they
could be learned from pediatrics. The pediatric provide care in mind.
model always includes a caregiver (i.e., a parent or We interviewed organizations representing
legal guardian) in conversations about a patient’s direct care workers (e.g., direct care aides who pro-
care and decisionmaking and could have valuable vide care in home-based settings and institutions),
lessons for how to facilitate caregiver integration but we only touch on those discussions in this report
among older or disabled adults with family members even though these workers are an integral part of the
involved in their care. care team. The direct care workforce face many of the
Key informants also mentioned caregivers with same barriers as family caregivers in communicating
unique needs, such as youths. As one informant noted: with medical professionals and, according to key
I think a lot of the younger caregivers have been
informants, are generally not integrated into health
left out of the conversation, so we don’t really care teams. They also face additional challenges com-
have a lot of information about what kind of municating with family caregivers. Family caregivers
supports they need. We talk a lot about that and direct care workers often perform similar work
middle-aged caregiver, that sandwich generation in their caregiving roles, creating misunderstandings
that’s taking care of a parent and also a child, and sometimes tensions over what caregiving tasks
and taking care of that aging population, but we are needed, how to meet those needs, and how to
don’t know a lot about [youth caregivers]—and divide caregiving responsibilities. Family caregivers
we know they’re out there, we know a lot of kids and direct care workers may also have competing
are taking care of their parents, and that’s with expectations. Because direct care workers may be the
school-aged kids—so there’s just a lot of ques- primary coordinators in the formal care team who
tions around, “Where do we even start? What
family caregivers encounter, they sometimes receive
do they need from us?”
the bulk of caregiver stress and frustration with the
Many of the suggestions to improve caregiver formal care system. Many of the policy areas and
integration would still pose barriers for youth care- discussions that relate to providers and medical pro-
givers. One key informant cited a case where a youth fessionals are also applicable to direct care workers.
was the primary caregiver but could not be noted as To fully integrate both family caregivers and direct
such on the records because she was a minor, creating care workers into a care team, it will be important to
added difficulties with communication. Other care- recognize their unique contributions.
givers with unique needs are those caring for family Finally, several informants discussed Medicaid
members with rare genetic diseases, in which case waivers as ways to support family caregivers. However,
providers may have less knowledge of the illness or the extent to which this can be done is unclear, and
patient’s needs than do caregivers. Relatedly, care- each state separately negotiates with CMS for permis-
givers can be care recipients at the same time. It is sion to offer such services. To make it easier for states
vital for the formal health care team to recognize this to include family caregiver supports and services as
and develop care plans accordingly, ideally with both part of Medicaid, CMS could provide guidance for

16
states on standard family caregiver support services encounter; best practices for communicating with
available through Medicaid waiver programs that caregivers; VHA privacy regulations; and under-
have been shown to be successful and on the best standing the caregiver journey.
way to implement these programs. Although this was The tools and training were created as part of a
not raised specifically in the interviews, this policy multistep research-based project that included an exam-
approach could be applied to payers more broadly and ination of previous literature, interviews with provid-
also to specific payers that offer Medicare Advantage ers, advisory board discussions, and expert feedback.
Plans. Beginning in 2019, supplemental benefits for Preliminary work to develop the definition of inclusive
Medicare Advantage Plans were expanded to cover care identified key challenges, including providers’ lack
caregiver support programs (e.g., adult day care, of time and the complexity and diversity of caregivers’
respite care, counseling) and, as of March 2020, 125 roles and expectations (Sperber et al., 2019).
Medicare Advantage Plans covering almost 900,000 This program addresses the barrier of identi-
enrollees offered support for caregivers as a sup- fying caregivers by making it standard practice to
plemental benefit (ATI Advisory, 2020). As more include a family member in a care team if a family
Medicare Advantage Plans consider offering caregiver caregiver is available. The program also addresses
supports, it will be important to establish best prac- trust and cultural barriers by training providers to
tices for implementing these programs. better understand and communicate with veterans
and their caregivers. It mitigates barriers associated
with time by providing videos and tools that can be
Case Studies of Promising used at one’s leisure to learn more about how to care
Programs for this population.
VHA is divided into 21 Veterans Integrated
Finally, we highlight four efforts that address some
Service Networks (VISNs). The program is currently
of the barriers identified and exemplify the types of
at three VISNs, with plans to expand to 12 VISNs
solutions that could be implemented across sectors to
by the end of 2020. As part of the program, data will
explicitly promote care collaboration between family
be collected to measure the impact of the program,
caregivers and the health care team.
VA Campaign for Inclusive Care (see Case Study
Box 1). The VA Campaign for Inclusive Care was Case Study Box 1
launched in January 2020 to provide Veterans Health
VA Campaign for Inclusive Care
Administration (VHA) health care providers with train-
ing and tools to better equip them to identify, engage, Date Established
and communicate with caregivers of veterans. The pro- January 2020

gram, which supports VA clinicians, nurses, and social Barriers Addressed

Identifying caregivers; trust and cultural barriers; time
workers, is organized by the Elizabeth Dole Foundation
limitations and competing demands
in collaboration with the VA and with support from
United Service Automobile Association (USAA).
The program designs and deploys tools and
training for VHA providers through an online portal
called the Academy for Inclusive Care. The portal
contains training videos, educational materials, and Key Features
other resources to help providers learn how to inte- • Provides training to providers on how to include
caregivers in care coordination
grate caregivers in care coordination. The training
• Offers access to the Academy for Inclusive Care online
videos cover such topics as steps to take to bring portal, which contains training videos, educational
together providers, veterans, and their caregivers; materials, and other resources
information about the roles of veteran caregivers; Target Population
information about stressors that veteran caregivers VHA health care providers

17
including tracking provider usage of the Academy Case Study Box 2
for Inclusive Care, provider skills assessments, and
surveys of caregivers. Optum Care Navigator
Optum Care Navigator (see Case Study Box 2).
Date Established
UnitedHealthcare Dual Complete® is a Dual Special January 2019
Needs Medicare Advantage Plan (DSNP) serving
Barriers Addressed
members who are covered by both Medicare and Identifying caregivers; communication and information-
Medicaid. The Optum at Home program is an sharing; time limitations and competing demands

integrated care delivery program that coordinates

clinical care for members in their home for certain
regional DSNP plans. The Optum Care Navigator,
launched in January 2019, is part of Optum at
Home. The Optum Care Navigator provides proac-
tive outreach to members and promotes outreach Key Features
• All members are assigned a care navigator
between the member and a care navigator from the • High-risk members are assigned a care navigator and
program by giving members one consistent contact. a clinician who does regular home visits
The program goals are to ensure the member’s access • Family caregivers communicate with care navigators
to care; mitigate social determinants of health; close and clinicians to address concerns and coordinate
care
gaps in care; and help members navigate a health care
system, including coordination with Medicaid. Target Population
Adults covered by both Medicare and Medicaid and their
The program gives all members access to a care caregivers
navigator who can address concerns and coordinate
their care. The care navigators typically have a med-
ical or professional background (e.g., social workers, them and connecting them to resources so that they
licensed professional nurses) and receive ongoing do not need to track down the information themselves.
training on how to engage with members and how to The program has not yet been formally evaluated,
assess their needs across multiple dimensions aligned but there are plans to examine its impact on such
with the social determinants of health. When the care outcomes as customer satisfaction, member quality of
navigator first engages with a member, he or she tries life, and ability for members to get the right care at the
to identify a caregiver by asking whether a family right time. Future plans are to explore other commu-
member should be part of the conversation, and, if so, nication methods among the care navigator and mem-
includes that person in discussions about the member’s bers and family caregivers, including texts and apps.
care plan. Care navigators also serve as a resource that UCLA Alzheimer’s and Dementia Care
caregivers can reach out to with questions and con- Program (see Case Study Box 3). The UCLA
cerns about the member’s care plan. Currently, family Alzheimer’s and Dementia Care (ADC) program was
caregivers and members communicate with the care created in July 2012 through a CMS innovation grant
navigators exclusively by phone. Members deemed and with support from philanthropy and the UCLA
high risk are also assigned a clinician who does a home Health system. The program was created to address
visit as often as once a month. gaps in dementia care, including the lack of support
This program addresses the barrier of identifying and training for family caregivers. To participate
caregivers by making it routine practice to ask about in ADC, the patient must have a referral from a
family caregivers. The program also addresses the UCLA physician. The program provides a 90-minute
barrier of communication and information-sharing in-person visit with a nurse practitioner who serves
by connecting patients and family caregivers to care as a dementia care specialist, a personalized care
navigators who can provide relevant information tools plan developed with the referring physician, and
and access. Care navigators can also save time for fam- follow-up calls or in-person visits to make sure that
ily caregivers by researching relevant information for the care plan is implemented appropriately. During
the visit, the needs of both the patient and caregiver

18
are assessed and potential services and programs Case Study Box 3
applicable to the patient and caregiver are discussed.
Caregivers also have access to assistance and UCLA Alzheimer’s and Dementia
advice 24 hours per day, seven days per week, 365 days Care Program
per year through the program’s dementia care special- Date Established
ists and on-call geriatricians. Dementia care special- 2012

ists provide patients and caregivers with information Barriers Addressed

Communication and information-sharing
about community-based resources that address their
needs. This program addresses barriers related to
communication and information-sharing by connect-
ing patients and caregivers to medical providers and
around-the-clock clinical and care information.
This program has been shown to have high levels
Key Features
of caregiver satisfaction (Tan, Jennings, and Reuben, • Each patient is assigned a nurse practitioner who
2014) and improved clinical outcomes for both the serves as a dementia care specialist
patient and caregiver (Reuben et al., 2019). Reported • A personalized care plan is developed with the
referring physician
challenges with implementing the UCLA ADC
• Family caregivers have access to assistance and
program included difficulties establishing clinical advice 24/7, 365 days a year through its dementia care
boundaries for the dementia care specialist and lack specialists and on-call geriatricians
of commercially available software to support data Target Population
collection, documentation, and communication for People with dementia and their family caregivers
this type of program (Reuben et al., 2013). The study
team at UCLA is conducting new evaluations to
examine how these health center–based interventions pictures, and videos that are then automatically saved
affect patient and caregiver outcomes compared with for easy access later, creating a longitudinal record.
community-based interventions. Vela provides care managers access to Care Paths,
Seniorlink (see Case Study Box 4). Seniorlink built by Seniorlink. These are institutionalized best
is a tech-enabled private health services company practices that give care managers conversational
founded in 2000 that promotes home care for adults scripts to use with members and family caregivers
with complex chronic conditions by providing sup- on how to manage clinical, social, and behavioral
port to their family caregivers. Seniorlink leverages aspects of care. The scripts can be customized for
its proprietary HIPAA-secure technology, Vela, and health plans as needed.
evidence-based protocols with clinical oversight from The care managers in Vela have health or profes-
care teams comprising a nurse and a care manager. sional backgrounds (e.g., social workers, nurses) and
In its home-based model, Seniorlink partners with may be employed by Seniorlink or the payer. These
state Medicaid payers or health plans to offer a solutions address the barrier of communication and
cost-effective alternative to nursing home care. They information-sharing by enabling family caregivers to
also partner with health plans to augment their case ask questions and provide updates about their loved
management capabilities and offer both care manag- ones while receiving support from their professional
ers through Seniorlink clinical teams and access to health care team. It also saves time by providing oppor-
Vela. Through the Vela app, care managers connect tunities through its asynchronous communication
with members and their family caregivers. feature to share information in real time and offers a
Vela was designed to include social media centralized point of contact for family caregivers.
functions that a typical caregiver already uses (e.g., Members enrolled in the home-based model of
group chatting, sharing of pictures/videos) to make it care from Seniorlink have been found to experience
user-friendly. Family caregivers, members, and other fewer hospitalizations and emergency room visits
care team partners can use Vela to report incidents compared with Medicare beneficiaries with similar
(e.g., falls, hospitalizations) and share documents, complex conditions (Patel and Tumlinson, 2017).

19
 evaluations of programs to improve integration
Case Study Box 4
of family caregivers into the health care team,
Seniorlink but a more global, systematic review focused
only on relevant programs is still needed to
Date Established
2000
identify the evidence base for program imple-
mentation in the policy areas we identified and
Barriers Addressed
Communication and information-sharing; time limitations areas where evaluation and research are still
and competing demands needed. For example, Policy Area 3 (invest in
programs that provide supportive services for
family caregivers) would benefit particularly
from this form of evaluation. There are many
programs available to support caregivers. A
systematic review of those that produce success-
Key Features ful outcomes is needed to identify the best ways
• Leverages both one-on-one support through a care
team—consisting of a nurse and a care manager—and to support family caregivers and to determine
a proprietary HIPAA-secure app called Vela which programs are cost-feasible for government
• Vela was designed to include communication functions agencies, employers, or payers to implement.
that a typical caregiver already uses and provides the
ability to share documents that are automatically • Expand the current study and include
saved for easy access later informant consensus-building methods to
• Care teams use Care Paths, which are institutionalized assess facilitators on a variety of metrics and
best practices, to communicate with family caregivers
identify a comprehensive list of action items
about clinical, social, and behavioral aspects of care
for policy implementation. Given that this
Target Population
Adults with complex chronic conditions or disabilities study involved a small number of interviews, a
covered by both Medicare and Medicaid and their family natural next step is to convene a larger group
caregivers
of informants, either through an expert panel,
focus groups, or more interviews, to see if
there are other facilitators or action items to
Seniorlink plans to expand operations to additional consider. Once a more comprehensive set is
states and is conducting pilots with national health identified, they could be evaluated on several
plans, including Medicare Advantage Plans, to test dimensions. In other RAND work, researchers
ways to improve collaboration among certain popu- assessed policy options for LTSS for demen-
lations, such as family caregivers of people diagnosed tia on the domains of feasibility, impact, and
with Alzheimer’s or dementia and family caregivers equity (Shih et al., 2014). We recommend
of Medicare Advantage members who have multiple doing the same for the final set of facilita-
chronic conditions and are frequently hospitalized tors, ideally by developing evaluation metrics
and struggle with activities of daily living. through a large and diverse group of infor-
mants and consensus methods.
This method would help identify
Recommendations for Next Steps high-impact, feasible approaches that are ripe
Using the facilitators suggested in the key informant for implementation versus those that may need
interviews, we identified six policy areas in which further development before they are ready to
activities could help to integrate the family caregiver be implemented. For instance, Policy Area 2
into the formal care team. However, pursuing these (incentivize providers to engage with family
opportunities first requires several critical steps. caregivers) would particularly benefit from an
• Systematic review of evidence-based pro- informant assessment of the feasibility of dif-
grams. Our literature review identified some ferent types of facilitators, because we received
inconsistent information in our interviews on

20
 the feasibility of this option. Although it sur- eyes and ears—together with paid caregivers—it’s the
faced in several interviews as a viable solution, people who are in the home all the time who really
one informant suggested that providers would understand what is possible and what isn’t, [and are]
not welcome new billing options. able to think creatively about what the solutions ought
• Cost-effectiveness analyses. Policies are to be [for supporting the patient].” As noted in the lit-
unlikely to be implemented without evidence erature and our interviews with experts, there are also
of cost-effectiveness showing that the benefits established benefits to the care recipient from receiv-
(e.g., better patient health, lower health care ing care that is well coordinated between the family
costs) outweigh the costs (e.g., policy imple- caregivers and a formal care team.
mentation costs). Formal cost-effectiveness The central role of family members as care
analyses of the comprehensive set of facilita- providers has become even more pronounced in the
tors will be essential for selecting and imple- context of the COVID-19 pandemic. Family members
menting the most beneficial policies. may be reluctant to use personal care and home health
• Potential pilot options. A next step would also aides to care for their loved ones. Nursing homes are
be to pilot potential interventions to obtain also a less viable option for care as disease spread
data on effectiveness. Piloting combinations of has been rampant in them and in other institutional
approaches could also be beneficial. Initiatives settings (Barnett and Grabowski, 2020). COVID-19
in Policy Areas 1 and 3, for instance, may has exposed many of the flaws in the current
have greater impact if considered in tandem. long-term care system and facilitated new supports for
Programs to support family caregivers (Policy home-based care (Fox-Grage, Teshale, and Spradlin,
Area 3) can be best implemented if caregivers are 2020; Volp, Diamond, and Shrank, 2020; Werner,
identified in a systematic way (Policy Area 1). Hoffman, and Coe, 2020). In this way, COVID-19
could disrupt the existing LTSS system while provid-
ing new opportunities for integrating family members
into care teams in the future. For instance, new waiver
Conclusions
options to pay family members in lieu of formal care-
Family caregivers perform critical roles within the givers could serve to grow the pool of family caregivers
health care team. Although the role of family caregiv- and provide even greater motivation for improving
ers has begun to gain more recognition, integrating their role as care team partners.
family caregivers as partners in the health care team Although other work (National Academies of
is not standard protocol. There are many reasons why Sciences, Engineering, and Medicine, 2016) has
family caregivers should be included in the care team. already described caregiver needs and made rec-
They tend to have intimate knowledge of the care ommendations for caregiver supports, our study
recipient’s needs and wishes, giving them a unique is unique in that it focuses explicitly on integrat-
ability to monitor and provide care. They also know ing caregivers into the formal health care team by
the patient best, can provide valuable information to interviewing experts across a variety of sectors (e.g.,
care providers, and are, as one expert put it, “the true

“[I]t’s the people who are in the home all the time
who really understand what is possible and what
isn’t, [and are] able to think creatively about what the
solutions ought to be [for supporting the patient].”

21
caregiver advocates and experts, payers, providers) caregivers into the formal care team. This connection
and identifying potential solutions and promising should be explored in future work.
efforts applied in different settings.
We identified barriers to integration falling
References
under four key themes: (1) identifying caregivers;
AARP and National Alliance for Caregiving, Caregiving in the U.S.
(2) communication and information-sharing; (3) time 2020, Washington, D.C., May 14, 2020. As of August 20, 2020:
limitations and competing demands; and (4) trust [Link]
and cultural barriers. We also identified six policy Amerigroup Corporation, Medicaid Long-Term Services and
Supports: A Snapshot, Virginia Beach, Va., 2014.
areas in which initiatives could surmount these bar-
riers: (1) identify and record information on family ATI Advisory, 2020 SSBCI and New Primarily Health-Related
Benefits, Washington, D.C., March 20, 2020. As of August 20, 2020:
caregivers; (2) incentivize providers to engage with [Link]
family caregivers; (3) invest in programs that provide uploads/2020/03/2020-03-23_SSBCI-and-Primarily-Health-
Related-Benefits-Analysis_ATI-[Link]
supportive services for family caregivers; (4) expand
Barnett, M. L., D. C. Grabowski, “Nursing Homes Are Ground
access to and funding for care coordinators to sup- Zero for Covid-19 Pandemic,” JAMA Health Forum, 2020. As of
port caregivers and connect them to clinical informa- August 20, 2020:
[Link]
tion; (5) implement training programs for providers fullarticle/2763666
and caregivers to facilitate effective communication;
Bass, D. M., P. A. Clark, W. J. Looman, C. A. McCarthy,
and (6) develop, test, and improve caregiver access and S. Eckert, “The Cleveland Alzheimer’s Managed Care
to technologies that foster caregiver-provider care Demonstration: Outcomes After 12 Months of Implementation,”
Gerontologist, Vol. 43, No. 1, 2003, pp. 73–85.
integration and information-sharing.
Bass, D. M., K. S. Judge, A. L. Snow, N. L. Wilson, R. Morgan,
Finally, we offer case studies that provide a W. J. Looman, C. A. McCarthy, K. Maslow, J. A. Moye,
snapshot of existing programs that are addressing R. Randazzo, M. Garcia-Maldonado, R. Elbein, G. Odenheimer,
and M. E. Kunik, “Caregiver Outcomes of Partners in Dementia
some of these barriers. We recommend expanding Care: Effect of a Care Coordination Program for Veterans with
our approach through informant-engaged consen- Dementia and Their Family Members and Friends,” Journal of the
American Geriatrics Society, Vol. 61, No. 8, 2013, pp. 1377–1386.
sus methods; assessing the feasibility and impact of
alternative approaches; determining cost effectiveness; Bruening, R., N. Sperber, K. Miller, S. Andrews, K. Steinhauser,
G. D. Wieland, J. Lindquist, M. Shepherd-Banigan, K. Ramos,
assessing policy approaches on metrics of feasibility J. Henius, M. Kabat, and C. Van Houtven, “Connecting
and impact; evaluating cost effectiveness; determining Caregivers to Support: Lessons Learned from the VA Caregiver
Support Program,” Journal of Applied Gerontology, Vol. 39, No. 4,
the availability of evidence-based research on program 2020, pp. 368–376.
outcomes; and building consensus on how best to Callahan, C. M., M. A. Boustani, G. Sachs, and H. C. Hendrie,
implement the most-promising approaches. “Integrating Care for Older Adults with Cognitive Impairment,”
Current Alzheimer Research, Vol. 6, No. 4, 2009, pp. 368–374.
The policy area of developing, testing, and
improving the use of technologies to connect care- Coleman, E. A., “Family Caregivers as Partners in Care
Transitions: The Caregiver Advise Record and Enable Act,”
givers to a care team is particularly crucial now, Journal of Hospital Medicine, Vol. 11, No. 12, 2016, pp. 883–885.
when people are hesitant to visit health care provid- Congressional Budget Office, Rising Demand for Long-Term
ers in person and employ formal caregivers from Services and Supports for Elderly People, Washington, D.C.:
U.S. Congress, Publication No. 4240, June 2013.
outside the home because of the risk of contracting
Feinberg, L., and A. Houser, “Assessing Family Caregiver Needs:
COVID-19. Telemedicine is being used by health Policy and Practice Considerations,” AARP Public Policy
care professionals in lieu of office appointments. Institute, fact sheet, 2012. As of August 3, 2020:
Technology to support caregivers and connect them [Link]
institute/ltc/2012/[Link]
to the care team is also critical for ensuring that care
Fox-Grage, W., S. Teshale, and P. Spradlin, “States Race to Secure
needs are being sufficiently met. This shift toward Home- and Community-Based Services During COVID-19,” National
telemedicine and technology use for caregiver inte- Academy for State Health Policy, April 20, 2020. As of August 20, 2020:
[Link]
gration could persist even after the pandemic. based-services-during-covid-19/
Data for this report were collected prior to
the COVID-19 pandemic so we did not ask in our
interviews what the pandemic implied for integrating

22
Griffin, J. M., C. Malcolm, P. Wright, E. Hagel Campbell, M. Reuben, D. B., Z. S. Tan, T. Romero, N. S. Wenger, E. Keeler,
Kabat, A. K. Bangerter, and N. A. Sayer, “U.S. Veteran Health and L. A. Jennings, “Patient and Caregiver Benefit from a
Care Utilization Increases After Caregivers’ Use of National Comprehensive Dementia Care Program: 1‐Year Results from the
Caregiver Telephone Support Line,” Health and Social Work, UCLA Alzheimer’s and Dementia Care Program,” Journal of the
Vol. 42, No. 2, 2017, pp. e111–e119. American Geriatrics Society, Vol. 67, No. 11, 2019, pp. 2267–2273.
Grossman, M. R., D. K. Zak, and E. M. Zelinski, “Mobile Apps Samus, Q. M., D. Johnston, B. S. Black, E. Hess, C. Lyman,
for Caregivers of Older Adults: Quantitative Content Analysis,” A. Vavilikolanu, J. Pollutra, J. M. Leoutsakos, L. N. Gitlin,
JMIR mHealth uHealth, Vol. 6, No. 7, 2018, p. e162. P. V. Rabins, and C. G. Lyketsos, “A Multidimensional Home-
Based Care Coordination Intervention for Elders with Memory
Guay, C., C. Auger, L. Demers, W. B. Mortenson, W. C. Miller, Disorders: The Maximizing Independence at Home (MIND)
D. Gelinas-Bronsard, and S. Ahmed, “Components and Pilot Randomized Trial,” American Journal of Geriatric
Outcomes of Internet-Based Interventions for Caregivers of Psychiatry, Vol. 22, No. 4, 2014, pp. 398–414.
Older Adults: Systematic Review,” Journal of Medical Internet
Research, Vol. 19, No. 9, 2017, p. e313. Schulz, R., and S. J. Czaja, “Family Caregiving: A Vision for the
Future,” American Journal of Geriatric Psychiatry, Vol. 26, No. 3,
Hengelaar, A. H., M. van Hartingsveldt, Y. Wittenberg, F. van 2018, pp. 358–363.
Etten-Jamaludin, R. Kwekkeboom, and T. Satink, “Exploring
the Collaboration Between Formal and Informal Care from the Shih, R. A., T. W. Concannon, J. L. Liu, and E. M. Friedman, Improving
Professional Perspective: A Thematic Synthesis,” Health & Social Dementia Long-Term Care: A Policy Blueprint, Santa Monica, Calif.:
Care in the Community, Vol. 26, No. 4, 2018, pp. 474–485. RAND Corporation, RR-597, 2014. As of August 21, 2020:
[Link]
Kaiser, R. M., and S. L. Kaiser, “The Insiders as Outsiders:
Professionals Caring for an Aging Parent,” Gerontologist, Vol. 57, Sperber, N. R., N. A. Boucher, R. Delgado, M. E. Shepherd-
No. 1, 2017, pp. 46–53. Banigan, K. McKenna, M. Moore, R. Barrett, M. Kabat, and
C. H. Van Houtven, “Including Family Caregivers In Seriously Ill
Meyer, K., N. Kaiser, D. Benton, S. Fitzpatrick, Z. Gassoumis, Veterans’ Care: A Mixed-Methods Study,” Health Affairs, Vol. 38,
K. Wilber, and the California Task Force on Family Caregiving, No. 6, 2019, pp. 957–963.
Picking Up the Pace of Change in California: A Report from the
California Task Force on Family Caregiving, Los Angeles, Calif.: Tan, Z. S., L. Jennings, and D. Reuben, “Coordinated Care
University of Southern California Leonard Davis School of Management for Dementia in a Large Academic Health System,”
Gerontology, 2018. Health Affairs, Vol. 33, No. 4, 2014, pp. 619–625.
Moore, C. D., “Enhancing Health Care Communication Skills: Ujvari, K., L. F. Feinberg, M. Edwards-Orr, M. Morris, and
Preliminary Evaluation of a Curriculum for Family Caregivers,” H. Rich, “A Solution, with or Without Pandemic: Let Individuals
Home Health Care Services Quarterly, Vol. 27, No. 1, 2008, pp. 21–35. Hire Family for Care,” AARP blog, May 11, 2020. As of
August 20, 2020:
Moore, C. D., and K. M. Cook, “Promoting and Measuring Family [Link]
Caregiver Self-Efficacy in Caregiver-Physician Interactions,” Social or-without-pandemic-let-individuals-hire-family-for-
Work in Health Care, Vol. 50, No. 10, 2011, pp. 801–814. care?cmp=SNO-TW-CPPI&socialid=3337351972
Muhlestein, D., R. Saunders, R. Richards, and M. McClellan, Volp, K. G., S M. Diamond, and W. H. Shrank, “Innovation in
“Recent Progress in the Value Journey: Growth of ACOs and Home Care: Time for a New Payment Model,” JAMA, Vol. 323,
Value-Based Payment Models in 2018,” Health Affairs blog, 2018. No. 24, May 21, 2020, pp. 2474–2475. As of August 20, 2020:
Nadash, P., N. M. Silverstein, and F. Porell, “The Dementia Care doi:10.1001/jama.2020.1036
Coordination Program: Engaging Health Systems in Caregiver Washington, K. T., S. E. Meadows, S. G. Elliott, and
Supports,” Dementia, Vol. 18, No. 4, 2019, pp. 1273–1285. R. J. Koopman, “Information Needs of Informal Caregivers
National Academies of Sciences, Engineering, and Medicine, of Older Adults with Chronic Health Conditions,” Patient
Families Caring for an Aging America, Washington, D.C., 2016. Education and Counseling, Vol. 83, No. 1, 2011, pp. 37–44.

Patel, J., and A. Tumlinson, “Engaging Family Caregivers Weber-Raley, L., and Smith, E., Caregiving in the US 2015, National
Translates to Better Health Outcomes and Lower Costs,” Alliance for Caregiving and the AARP Public Policy Institute,
Iproceedings, Vol. 3, No. 1, 2017, p. e1. June 2015. As of September 8, 2020:
[Link]
Peterson, K., H. Hahn, A. J. Lee, C. A. Madison, and A. Atri, [Link]
“In the Information Age, Do Dementia Caregivers Get the
Information They Need? Semi-Structured Interviews to Werner, R. M., A. K. Hoffman, and N. B. Coe, “Long-Term Care
Determine Informal Caregivers’ Education Needs, Barriers, and Policy After Covid-19—Solving the Nursing Home Crisis,” New
Preferences,” BMC Geriatrics, Vol. 16, No. 1, 2016, p. 164. England Journal of Medicine, May 27, 2020. As of August 20, 2020:
[Link]
Reinhard, S., “Home Alone Revisited: Family Caregivers
Providing Complex Care,” Innovation in Aging, Vol. 3, 2019, Wolff, J. L., A. Berger, D. Clarke, J. A. Green, R. Stametz,
pp. S747–S748. C. Yule, and J. D. Darer, “Patients, Care Partners, and Shared
Access to the Patient Portal: Online Practices at an Integrated
Reuben, D. B., L. C. Evertson, N. S. Wenger, K. Serrano, J. Health System,” Journal of the American Medical Informatics
Chodosh, L. Ercoli, and Z. S. Tan, “The University of California Association, Vol. 23, No. 6, 2016, pp. 1150–1158.
at Los Angeles Alzheimer’s and Dementia Care Program
for Comprehensive, Coordinated, Patient-Centered Care: Wolff, J. L., E. R. Giovannetti, C. M. Boyd, L. Reider, S. Palmer,
Preliminary Data,” Journal of the American Geriatrics Society, D. Scharfstein, J. Marsteller, S. T. Wegener, K. Frey, B. Leff,
Vol. 61, No. 12, 2013, pp. 2214–2218. K. D. Frick, and C. Boult, “Effects of Guided Care on Family
Caregivers,” Gerontologist, Vol. 50, No. 4, 2010, pp. 459–470.

23
About the Authors
Esther M. Friedman is a behavioral and social scientist at the RAND
Corporation. She works on a variety of topics related to healthy aging, with a
focus on long-term care and family caregiving. She received her Ph.D. from the
University of California, Los Angeles.

Patricia K. Tong is an economist at the RAND Corporation. Her research focuses

on developing a better understanding of how public policy affects household out-
comes, particularly among low-income families, married couples, and the aging
population. She received her Ph.D. from the University of California, San Diego.
C O R P O R AT I O N
The authors would like to thank Terri Tanielian for serving as an adviser on
this project and for her helpful comments throughout the development of this
report. The authors are also grateful to Steve Metzger for his valuable support of The RAND Corporation is a research
this work and to the key informants for their time and insight. The authors also organization that develops solutions
thank Lori Frank and Luci Leykum for their valuable feedback in the quality to public policy challenges to help
make communities throughout
assurance review of this report. Lastly, they are thankful to Allison Kirkegaard
the world safer and more secure,
and Alejandro Becca for research assistance.
healthier and more prosperous.
RAND is nonprofit, nonpartisan, and
About This Report committed to the public interest.

There are about 53 million family and friends providing care and assistance to RAND’s publications do not
loved ones in the United States. Although family caregivers provide a significant necessarily reflect the opinions of
portion of health and support services to individuals with serious illnesses, they its research clients and sponsors.
are often overlooked by the U.S. health care system. Fundamental changes are is a registered trademark.
needed in the way we identify, assess, and support family caregivers. Recent
Limited Print and Electronic
changes in the U.S. health care system and payment models have increased the
Distribution Rights
opportunities to integrate family caregivers into care teams.
This document and trademark(s)
In this report, the authors reviewed the literature on the role of family caregiv- contained herein are protected
ers in the coordination of care and conducted key informant interviews with by law. This representation of
13 experts from diverse stakeholder groups to better understand the barriers to RAND intellectual property is
integrating family caregivers into a patient’s health care team and ways to mitigate provided for noncommercial use
these barriers. The authors identified promising policy directions and provide rec- only. Unauthorized posting of this
ommendations for next steps for assessing, developing, and implementing policies publication online is prohibited.
to improve the integration of family caregivers into health care teams. Permission is given to duplicate this
document for personal use only, as
This research was funded by Seniorlink and a gift from Steve Metzger, a member long as it is unaltered and complete.
of the RAND Health Advisory Board, and was carried out within the Access and Permission is required from RAND
Delivery Program in RAND Health Care. to reproduce, or reuse in another
form, any of our research documents
RAND Health Care, a division of the RAND Corporation, promotes healthier soci- for commercial use. For information
eties by improving health care systems in the United States and other countries. We on reprint and linking permissions,
do this by providing health care decisionmakers, practitioners and consumers with please visit [Link]/pubs/
actionable, rigorous, objective evidence to support their most complex decisions. permissions.
For more information, see [Link]/health-care or contact
For more information on this
RAND Health Care Communications publication, visit
1776 Main Street [Link]/t/RRA105-1.
P.O. Box 2138
© 2020 RAND Corporation
Santa Monica, CA 90407-2138
(310) 393-0411, ext. 7775
RAND_Health-Care@[Link] [Link]

RR-A105-1