SUPPORTING FAMILY CAREGIVERS PROVIDING COMPLEX CARE

AARP PUBLIC POLICY INSTITUTE

November 2020

 

Theme

LEARNING RESOURCES AND PRACTICES TO

IMPROVE PATIENT AND FAMILY ENGAGEMENT:
12 WAYS TO FACILITATE FAMILY CAREGIVER EDUCATION IN HOSPITALS

ABOUT THE SERIES
Supporting Family Caregivers Providing
Complex Care

The Caregiver Advise, Record, Enable (CARE) Act is now
law in more than 40 states and territories. Policy makers
recognize that family caregivers need support to perform
the medical/nursing tasks they face at home after a

family member or friend is discharged from the hospital.

The landmark 2012 AARP and United Hospital Fund
report Home Alone: Family Caregivers Providing Complex
Chronic Care, funded by The John A. Hartford Foundation,
drove rapid adoption of the CARE Act. The report also
inspired the creation of the Home Alone Alliance, a
partnership of public, private, and nonprofit US
organizations coming together to change the way health
care organizations and professionals interact with
family caregivers.

Home Alone Alliance members are conducting a national
CARE Act implementation scan to identify promising
practices in hospitals and ways to overcome barriers.
Some practices involve applying proven strategies to
empower a new audience-family caregivers. Ten major
themes emerged and provide a glimpse into the value
and complexity of CARE Act implementation.

The Supporting Family Caregivers Providing Complex
Care series includes 10 papers that highlight these
themes. The series also features Promising Practice
papers that provide specifics on a single practice in
one health care system and Spotlight papers that
describe innovative state efforts to promote change or
a health care system that is implementing multiple
practices simultaneously. See www.aarp.org/

nolongeralone.

These early snapshots from the field share insights about
how hospitals are supporting family caregivers and open
a dialogue among leaders involved in enhancing health

care delivery. These early observations ultimately could

inform practice recommendations.

Overview

More than 20 million family caregivers perform
increasingly complex medical/nursing tasks at home after
a family member or friend is discharged from the hospital.'
Health care systems recognize that guiding and
instructing family caregivers throughout a hospital stay
and beyond helps better prepare them to provide that
complex care. This support helps family caregivers
manage the care recipient's ongoing comfort and quality
of life and avert complications that can lead to costly
emergency department visits and readmissions.

A Holistic Approach:
Educating Family Caregivers and Training Staff

Health systems are responding to this shift by
providing learning resources to family caregivers to
help them do the following:

e Understand their role in the patient's care.

e Prepare to perform the medical/nursing tasks they
face after hospital discharge.

e Reinforce learning during the hospital stay and at
home by accessing culturally appropriate resources.

Hospitals also teach staff, such as nurses, pharmacists,
occupational and physical therapists, social workers, case
managers, discharge planners, respiratory therapists,
nurse practitioners, physician assistants, and physicians,
how to include family caregivers as integral members of
the care team throughout the hospital stay.

Clinicians learn to anticipate what family caregivers need
to know, encourage their input in decision making, and
prepare them for the care they will provide at home.

This approach also helps improve care coordination and
prevent discharge delays.

 
Learning Resources and Practices to Improve Patient and Family Engagement

 

Emerging Themes of the Supporting Family
Caregivers Providing Complex Care

Publication Series

= Learning resources for family caregivers
¢ Staff training

¢ Communication practices

e EHR supports to identify and include family
caregivers

¢ Transition in care programs and postdischarge
support

e Approaches to making practice and system
changes

e Pharmacy innovations

e Screening practices

e Addressing needs of specific populations
e Benefits of the CARE Act

Identifying Themes from
Hospital Visits

To learn how hospitals are supporting family caregivers
after CARE Act implementation, we assembled a research
team of Home Alone Alliance and AARP Public Policy Institute
leaders, nurse researchers, and policy experts to design
and conduct site visits to hospitals across the country.
This work was funded in part by The John A. Hartford
Foundation, the Ralph C. Wilson, Jr. Foundation, and AARP.

The research team has visited dozens of health systems
and hospitals in Arkansas, California, Colorado, Illinois,
Michigan, Nebraska, Nevada, New Jersey, New York, Virginia,
and West Virginia. We typically meet with leaders and staff
from at least two health systems per state and two to three
hospitals per system. The team visits a variety of types of
hospitals: nonprofit, for-profit, and government hospitals;
academic health centers; midsize suburban systems;
critical access hospitals in rural communities; and level |
through V trauma centers.

Participant informants include chief nursing officers, chief
technology officers, service and unit managers, patient
experience leaders, quality champions, administrators,
educators, front-line nurses, physicians, electronic health
record (EHR) leaders, and staff from areas such as clinical
and social services, accountable care organizations,
pharmacy, registration, and admissions. We consult
individuals from family advisory councils, community-
based organizations, AARP state offices, consumer
advocacy organizations, professional groups, and state
hospital associations. We conduct focus groups with
family caregivers who have had a recent experience with
a particular hospital or system. Interviews are recorded
and then analyzed, identifying common themes and

novel approaches.

The intention of the Supporting Family Caregivers Providing
Complex Care series is to describe the experiences of those

making changes that align with the CARE Act. These early
snapshots from the field describe the highlights of supports
in place for family caregivers who provide complex care at
home to a family member or friend after discharge from
the hospital. The series opens a dialogue among health
care leaders with a wide variety of perspectives. The
papers share insights and could form the basis for future
recommendations about supporting family caregivers.

The Need

When family caregivers are asked what would make it
easier for them to perform medical/nursing tasks at home
after discharge, they report they want more and/or better
instruction." More preparation would help them with the
challenges of tasks such as caring for wounds, managing
intense pain, and administering pills, suppositories,

and injections.

Their preferred instructional formats include additional
exposure to the content during the hospital stay, practice
with supervision, written instructions, visual instruction,
videos, consistency in instructions, and a phone number to
call with questions.?

 
Learning Resources and Practices to Improve Patient and Family Engagement

 

 

Lost In Translation: A Vignette

The example below illustrates gaps in family caregiver knowledge, subsequent consequences, and opportunities for
system change. The promising practices shared in this paper can help prevent those gaps.

Example: Anna is hospitalized after a fall and
€s) has surgery to repair her fractured shoulder.

Her son, David, and his wife, Sofia, come to
visit after work each day and focus on Anna's comfort
and concerns. They don't realize the complexity of care
they face after discharge, so they aren't asking the staff
questions about how to take care of Anna's shoulder
wound at home.

David is unprepared when the discharge planner calls
him at work to tell him his mother will be ready to go
home in a few hours. David and Sofia hurry to the
hospital. The nurse talks to them about Anna's care and
gives them a large packet of written instructions. After
they rush to get the supplies they need and get home,
they realize they can't remember all the details of their
instructions. They speak another language at home, and
they have trouble understanding complex written
instructions in English. The translated instructions they
do receive are not translated correctly and confuse them
even more. They wish someone had shown them how to
care for the wound while Anna was in the hospital. Maybe
then they would have known what questions to ask.

In the middle of the night, David struggles to help Anna
get out of bed to use the bathroom and notices blood
on her shoulder dressing. She is in pain and shaking,

and she seems weak. He worries that her wound is
bleeding too much. David and Sophia panic and call an
ambulance to take Anna to the emergency department
instead of calling the phone number the hospital provided.

Repercussions: Anna was readmitted. David

and Sofia experienced a great deal of

disruption from an additional hospital stay
and worry because they didn't know how to help Anna,
who was distraught.

Rey Opportunity: It would be more cost-effective

for the hospital to identify family caregivers
like David and Sofia and engage them when
they are visiting the person receiving care-providing
hands-on instruction, guidance, and reinforcement
throughout the hospital stay-than to incur a readmission
penalty. Discharge instructions could reflect the cultural
norms and terms familiar to families living in the
hospital's service area. The instructions could address
pain management, mobility, wound care, and other
important details.

Be

David and Sofia would be prepared to care for Anna,
look for warning signs of complications, feel
empowered to take action, and respond appropriately
before a problem develops.

12 Highlighted Practices

Ways to Optimize One-on-One Interactions with Family Caregivers for

Instruction and Support

Health care systems use new approaches to prepare family caregivers to provide care at home after hospital discharge.
Highlighted practices from our ongoing national CARE Act implementation scan include the activities listed below.

 

(1) Understanding family caregiver willingness

The most important gauge of preparation for family
caregiving may be the person's expressed willingness
to receive instruction and participate in postdischarge
care. Hospital staff bear in mind that some visiting
family members or friends may not be willing or physically
able to be involved with care at home, and that others
who are not present may be more than willing.

 

(2) Conducting a family caregiver needs
assessment to determine readiness and
appropriate resources

Staff recognize that an individual has different needs
and pressing concerns over the course of the
caregiving journey. The beginning of caregiving often
entails being in a state of shock after a sudden health
crisis. Family caregivers managing such a crisis have

 
Learning Resources and Practices to Improve Patient and Family Engagement

 

little awareness of the caregiving role and health care
culture, and they are unable to fully process new
information. In contrast, seasoned caregivers might
feel confident about managing their caring
responsibilities but could be experiencing physical
and mental health problems of their own as a result
of years of stressful hands-on caregiving.

Before hospital staff provide resources, they assess
primary family caregivers to understand their
willingness, readiness, concerns, and priorities, and
then determine which resources will be most
beneficial to them as they provide care at home.

The assessment determines family caregivers' ability
and readiness from emotional, physical, and practical
perspectives. It also evaluates literacy and health
literacy levels, both of which inform how staff engage
the family caregiver and provide instruction and support.

 

(3) Screening to identify barriers

The assessmeni of family caregiver readiness also
screens for barriers to family caregiving related to
social determinants of health (e.g., living arrangements,
employment, food stability); cultural and language
differences; level of general and health literacy; and
visual, hearing, and other impairments. The result
indicates which resources are appropriate and where
gaps in resource availability exist.

Promising practices in hospitals help ensure that
information is available and understandable for all
literacy and health literacy levels. To facilitate family
caregiver education, hospitals account for diverse
family caregiving situations and the cultural
appropriateness of learning resources. They use
multiple channels that span the entire hospital stay
and beyond to ensure they reach as many family
caregivers as possible.

Because different learning styles and abilities can
influence the effectiveness of teaching materials,
hospitals provide information in various formats. They
consider situations in which family caregivers with
low incomes might have difficulty accessing online
videos or those with low literacy might struggle to
read instructions.

In this educational approach, as staff provide care,
they explain to family caregivers what they are
doing and why they are doing it in that particular way.
They make sure the content is presented in a way
that the family caregiver can understand easily.

m Staff members offer family caregivers
opportunities to restate the same information
in their own words, to be certain the family
caregivers understand the information and
feel confident in performing the task at home
after discharge.

m Staff offer opportunities for family caregivers
to perform tasks and receive feedback and
reinforcement as they practice.

Individualized attention enables hospital staff to

provide appropriate written information to

reinforce the live instruction.

Nurses and other staff increase the effectiveness

of one-to-one instruction by doing the following:

m Proactively arranging bedside appointments, at
a time that takes into account the family caregiver's
schedule, to create teaching opportunities

m Providing medical/nursing supplies and
teaching family caregivers how to use them

m Requesting that prescribers order a home health
visit to take place after discharge to reinforce
teaching, especially when there is a high level
of family caregiver anxiety, strain, and worry

When complex round-the-clock care will be

required after discharge, such as following

transplant surgery, some hospitals encourage the
primary family caregiver to stay overnight in the
hospital room and assume responsibility of care
for 24 hours with nurse supervision and support.

 

 

(4) Engaging in one-on-one instruction with

the family caregiver
e Nurses and staff in other roles use the teach-back
method during routine bedside care.

(5) Providing learning opportunities

in group settings

Some hospitals invite family caregivers to attend
and participate in rounds when the care team meets
to discuss the patient. Family caregivers have the
opportunity to receive detailed instruction and
valuable reinforcement. Scheduling rounds at a
regular time enables family caregivers to plan ahead
to attend.

Health systems offer in-person or web-based
support groups and free educational programs

as opportunities for family caregivers to learn

in nonclinical settings and also to learn from

one another.

 
Learning Resources and Practices to Improve Patient and Family Engagement

 

Education via System Delivery

 

(6) Gathering patient and family caregiver input

Health care system leaders recognize the value of
feedback from patient and family advisory councils
(PFACs) and make changes to their materials accordingly
to help staff include and educate family caregivers.
PFAC feedback about relevance of content, what may be
missing, and whether the content is useful and
delivered appropriately informs resource development.

 

J) Conducting care coordination across the
service area

Some regional health communities work across
hospital and postdischarge settings to coordinate care
and help staff support patients and family caregivers
throughout an individual's lifespan.

 

(8) Recording support information in the EHR

Hospital staff document family caregiver education in
the EHR and provide printed care notes, folders,
diagrams, pictures, and verbal instructions to family
caregivers. The documentation allows all clinicians
involved to prevent duplicating family caregiver
education but reinforce instruction as needed.

Resources Available before, during,
and after the Hospital Stay

9) Providing videos

e@ Some hospitals offer videos that are specific to
scheduled procedures to prepare family
caregivers beforehand.

e@ Health systems track the number of times viewers
access videos before, during, and after the
hospital stay to help them understand the
educational value of the videos and the extent to
which caregivers use those resources.

 

materials, digital signage, and web-based platforms.

Hospitals share the following promising practices:

e Provide plain-language placards listing local and/
or national family caregiver resources in family
waiting areas and/or patient rooms, on-demand
videos via the patient portal, online videos
accessible before and after discharge, and DVDs.

e Make these resources available in the languages
(and, when possible, cultural appropriateness) of
the patient population.

e Provide user-friendly technology, such as a tablet,
to enable access to learning resources. Interactive
care technologies can also enable educational
materials to be provided on mobile devices.

e Create versions of information for those who are
hard of hearing and those who use video and
audio devices as well as in-person translators.

e Develop content for family caregivers that
addresses the following:

m The importance of the family caregiver's role as
part of the care team

m Topics such as specific conditions and
medication management and side effects

m Achecklist of tasks to prepare for an
anticipated hospital stay

Building System-Wide Buy-In

 

 

(0) Using existing delivery channels to
normalize the role of family caregivers

With or without a formal family caregiver strategy or
program in place, hospital systems incorporate family
caregiver-focused information (or links to it) into
existing delivery mechanisms, processes, formats,
programs, and touchpoints, such as discharge

instructions, the patient portal, and billing statements.

Some health systems also incorporate family
caregiver-focused information into existing printed

')) Creating materials that address frequently

asked questions and sharing them
throughout the health system

e@ One health system provides a curriculum on
common caregiving tasks.

e One system develops "What to Look For" printed
materials for patients and families.

e The cardiac surgery unit at one hospital
distributes a booklet it developed on frequently
used postoperative medications.

e Departments of some specialties teach families
about upcoming surgery and recovery prior
to admission.

 

7) Conducting pilot programs

After one hospital piloted a teach-back program in a
single unit, and demonstrated value, other units
asked for the program. Eventually the program was
implemented throughout the entire hospital.

 
Learning Resources and Practices to Improve Patient and Family Engagement

 

Quantifying the Benefits

Benefits of Learning Resources
for Family Caregivers

For Staff

e Preventing discharge delays-Instructing family
caregivers helps hospital staff avoid discharge delays.
Staff can provide and reinforce information gradually
throughout the hospital stay rather than deliver large
quantities of information to distracted family caregivers
during the flurry of discharge activity. Staff can also
better coordinate discharge scheduling when family
caregivers understand the process and are prepared to
arrive at the hospital at the time of discharge.

e Streamlining staff communication with family
members-Primary family caregivers who receive
complete instruction and preparation can relay
information to other family members and friends, saving
hospital staff the time and energy spent repeating the
same information to multiple individuals.

e Taking advantage of the knowledge family
caregivers have about the person receiving care-
During live learning opportunities, family caregivers can
share relevant details about the hospitalized person's
goals, values, fears, preferences, and responses to
treatment. That information helps inform care plans.
They can also bring to the staff's attention subile
changes in the patient that signal a need for intervention
and provide additional context that can affect decisions
about care. Having information about unique
circumstances such as social determinants of health,
known medication side effects, delirium, dementia, and
substance use can be vital in developing a successful
care plan.

e Instructing the right person in postdischarge
care-By instructing the person or people who will be
helping at home, hospital staff can focus their efforts
appropriately. It is vital to ask who will serve as the
primary family caregiver because staff may not ever
encounter that individual in the hospital room. It is also
important to let families know they should inform the
hospital staff if someone else becomes the primary
family caregiver.

For Family Caregivers

e Detecting complications early to prevent problems
that can lead to readmissions-Qualitative data
indicate that discharged patients may be less likely to
have a complication at home that interferes with their
recovery or requires an emergency department visit or
hospital readmission when staff across roles and shifts
assess family caregivers and fully prepare them for
the care they will be providing. When family caregivers
understand how to identify a potential complication
early, they can seek help before the problem requires
treatment in the hospital setting.

e Decreasing family caregiver emotional, practical,
and financial strain-Family caregivers who are
adequately prepared to provide care at home can
experience reduced strain and disruption of daily life
during and after a family member's hospital stay. They
are better equipped to manage complex medical/nursing
tasks and pain, which is a major issue that carries an
emotional as well as practical and sometimes financial
strain.*

When family caregivers understand what to do and
expect and how to look for potential complications, they
have increased confidence and attentiveness. Good
preparation allows them to focus at home on providing
emotional support to the care recipient and to improve
their own health and well-being. And a confident family
caregiver increases the confidence level and emotional
comfort of the person receiving care.

® Facilitating continuity of care-Designated primary
family caregivers with a good understanding of the care
they will be providing at home can serve as the main
point of contact to ensure continuity of care before,
during, and after a hospital stay. The hospitalized
individual may move to a skilled nursing or assisted-
living facility o--more commonly-back home or to
a family member's home. Continuity of care during
all transitions within and outside the hospital helps
ensure medication reconciliation and accurate and
complete communication of patient-specific details,
including values and preferences, and prevents care and
communication gaps, errors, and omissions.

 
Learning Resources and Practices to Improve Patient and Family Engagement

 

e Arranging appropriate support at home to foster
a successful recovery-By having early and ongoing
conversations about care for the individual after
discharge, staff and family caregivers can collaborate to
determine what will be needed and arrange for adequate
instructions, supplies, and equipment necessary to
manage medical/nursing tasks at home and any further
help that may be required. Staff can provide referrals
to community resources that support the plan for
postdischarge care.

e Supporting independent living-Because a person's
ability to continue living independently can depend on
the care he or she receives following hospital discharge,
it is particularly important for staff to collaborate with
family caregivers who will help people with special
needs or older adults at home. It is also helpful for
hospital staff to know if the person receiving care will
have a temporary stay at another facility, such as a
rehabilitation center, so they can provide information
that will facilitate transitions to and from that setting.

What Does Success Look Like?

During site visits with health care organizations that

are implementing changes to include family caregivers

in the care process, we examined the impact of the
enhancements. Although hospitals use scorecards and
track many metrics, there was not universal identification
of the direct link of family caregiver engagement

with improvements in complication rates, emergency
department visits, readmissions, follow-up inbound and
outbound phone calls, and patient satisfaction.

An opportunity exists to set up a scorecard that monitors
key metrics over time with a special emphasis on linking
family caregiver interventions to specific outcomes. Health
systems can consider tracking and trending data by unit
and department to measure the impact of including family
caregivers throughout the hospital stay.

Ultimately, the best measure of success is the
experience of the family caregivers and whether they
feel included, heard, confident, and prepared to go
home for the next phase of care.

 

Overcoming Perceived Barriers

Resolving Challenges in Implementing Family Caregiver Education

Hospital leaders identify obstacles to the change process and develop ways to overcome them. Initial reactions to
the provisions of the CARE Act by hospital leaders and staff during site interviews include three primary concerns

that ultimately diminish.

ee Challenge: Caregivers are not always
available during the day to receive
instruction in the hospital.

e Resolutions:

e Allow the patient to record bedside
instruction to share with the family caregiver.

e Consider performing procedures at a time of day
when the family caregiver can be present.

e Make specific appointments with the family caregiver
to receive instruction.

e Provide instruction during all shifts.
ee Challenge: Culturally appropriate materials
aT in the language of the family caregiver are not

always available.

° Resolution: Understand the needs of the
i populations each hospital serves and develop
or obtain culturally appropriate materials. For
example, one hospital uses tablets to videoconference
with live translators when the appropriate in-person
translator is not available.

ee Challenge: Documentation of family caregiver
a education is dispersed across the EHR.
@
or internal information technology team to
reconfigure the display of family caregiver

data, assessment of readiness, and instruction into a
more easily accessible, single view to enable enhanced
interactions with family caregivers.

Resolution: Work with the EHR provider

 

 
Learning Resources and Practices to Improve Patient and Family Engagement

 

Additional Information
Implications of COVID-19

The COVID-19 (severe acute respiratory syndrome
coronavirus 2) pandemic has intensified the importance

of identifying and engaging family caregivers. Strict visitor
policies have hampered the ability of family caregivers

to be part of the hospital experience and be available

to support their family member and participate in care.
Limited face-to-face interaction between hospital staff and
family caregivers hinders communication about contextual
details and decision support-creating challenges for staff
members to maintain care quality and for family caregivers
to obtain guidance and instruction on postdischarge care.

Innovations are emerging to foster communication and
support caregivers in new ways through technology.
The timely launch of the rting Family Caregiver.
Providing Complex Care publication series highlights a
wide variety of promising practices in family caregiver
support just when they are most urgently needed.

Helpful Resources
The CARE Act

The name of the law and its specific provisions vary by
state, but CARE Act legislation generally requires that
hospitals do the following to support family caregivers:

e Advise patients in the hospital of their opportunity to
identify a family caregiver.

e Record the caregiver's name and contact information in
the health record (with the patient's permission).

e Enable family caregivers by providing as much notice
as possible about discharge timing, consulting with
them about the discharge plan, discussing their role
in carrying out that plan, and instructing them on the
medical/nursing tasks they will handle at home.

See the CARE Act map, which shows more than 40 states
that have passed the legislation.

Researcher Contact Information for Health
System Leaders

The Home Alone Alliance and AARP Public Policy Institute
leaders, nurse researchers, and policy experts continue
to conduct the national scan of hospitals that have
implemented the CARE Act and will share further results of

that work. We welcome the opportunity to discuss findings
with health system leaders to facilitate the culture change
involved in fundamentally integrating family caregivers into
existing hospital practices. To contact us, please email

homealonealliance@aarp.org.

Free Video Demonstrations of Medical/
Nursing Tasks for Family Caregivers

How-to videos and printable resource guides created
specifically for family caregivers show how to manage
specific tasks related to wound care, mobility, managing
medications, preparing special diets, and handling
incontinence. These resources, many of which are
available in both English and Spanish, are free of charge to

all. Visit aarp.org/nolongeralone.

Related Publications for Professionals,
Clinicians, and Policy Makers

To see details and data about the 20 million family
caregivers in the United States who perform medical/
nursing tasks and worry about making a mistake, see
Home Alone Revisited: Family Caregivers Providing
Complex Care, a 2019 special research report by the
founding partners of the Home Alone Alliance™, a
collaborative of AARP, and funded by The John A. Hartford
Foundation.®

The Supporting Family Caregivers Providing Complex
Care series of publications is based in part on insights in

Home Alone Revisited and The CARE Act Implementation:
Progress and Promise, a 2019 AARP Public Policy Institute
Spotlight report.°"

The American Journal of Nursing (A/N) publishes award-

winning evidence-based, peer-reviewed articles and
videos that teach clinicians how to best support family
caregivers. A/N also disseminates the work of the Home
Alone Alliance to nurses through editorials, podcasts,

and social media content. Home Alone Alliance articles
approved for continuing education credit are funded by
AARP, The John A. Hartford Foundation, the Retirement
Research Foundation on Aging, and the Ralph C. Wilson, Jr.
Foundation,

The National League for Nursing (NLN) offers simulation
modules nurse educators can use at no cost to teach
students about the individualized needs of family caregivers.
The Advancing Care Excellence for Caregivers (ACE.C)
program was developed with generous funding from The
John A. Hartford Foundation and the AARP Foundation.

 
Learning Resources and Practices to Improve Patient and Family Engagement

 

Additional Theme Papers in This Series

e Staff Training Practices to Improve Patient and Family
Engagement: 16 Ways to Include Family Caregivers and

Prevent Discharge Delays (PDF)

e Communication Practices to Improve Patient and Family
Engagement: 10 Ways to Identify and Engage Famil

Caregivers in Hospitals (PDF)
e Electronic Health Record (EHR) Practices to Improve Patient

and Family Engagement: 9 Ways to Help Staff Access Data
on Family Caregiver Discharge Preparation (PDF)

Publications in the Supporting Family Caregivers Providing
Complex Care series are available at www.aarp.org/
nolongeralone. For more information about the CARE Act,
visit the AARP Public Policy Institute website or https://
states.aarp.org/tag/the-care-act. To learn more about the
Home Alone Alliance, visit www.aarp.org/nolongeralone.

Series Authors

Authors of the Supporting Family Caregivers Providing
Complex Care series of publications:

e Susan C. Reinhard, RN, PhD, FAAN, Senior Vice
President and Chief Strategist, Nursing Workforce
and Family Caregiving Initiatives, AARP Public Policy
Institute. @susanpolicy

e Heather M. Young, RN, PhD, FAAN, Senior Fellow AARP
Public Policy Institute; Professor, Betty Irene Moore
School of Nursing, University of California, Davis.
@YoungHeatherM

e Rita B. Choula, MA, Director, Caregiving, AARP Public
Policy Institute. @rchoula

e Karen Drenkard, RN, PhD, FAAN, NEA-BC, Associate
Dean, Clinical Practice and Community Engagement,
The George Washington University School of Nursing.
@DrDrenk

e Beth R. Suereth, Founder and Chief Executive Officer,
Caregiving Pathways. @BethSuereth

 

' Susan C. Reinhard et al., Home Alone Revisited: Family Caregivers

Providing Complex Care (Washington, DC: Home Alone Alliance, 2019),

https://www.aarp.or i/info-2018/home-alone-family- ivers-
roviding-complex-chronic-care.

26 Ibid.

7 Susan C. Reinhard et al., The CARE Act Implementation: Progress and
Promise (Washington, DC: AARP Public Policy Institute, March 2019),

 

act. html.

Supporting Family Caregivers Providing Complex Care
Theme Paper #1001, November 2020
© AARP PUBLIC POLICY INSTITUTE
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Washington, DC 20049

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