Family Caregiving for People with Cancer and Other Serious Illnesses Proceedings of a Workshop (2023) / Chapter Skim
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To examine the opportunities to better support family caregivers for people with cancer and other serious illnesses, the Roundtable on Quality Care for People with Serious Illness, the National Cancer Policy Forum, and the Forum on Aging, Disability, and Independence hosted a public workshop, Family Caregiving for People with Cancer and Other Serious Illnesses, on May 16–17, 2022. This workshop built upon previous work, including the 2016 National Academies of Sciences, Engineering, and Medicine (the National Academies)
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Family Caregivers Act, and set the stage for subsequent sessions that explored the diverse needs of family caregivers; the resources, support, and training required by family caregivers; several exem plars of effective programs that meet these needs; and the importance of integrating caregivers into the health care team. Presentations also examined key research gaps and opportunities and discussed ways to include caregivers in research activities.
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Nevertheless, with more than 50 million family caregivers in the United States, the health care system has yet to provide widespread, systematic implementation of meaningful programs and resources (AARP and National Alliance for Caregiving, 2020)
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• Advance racial equity, and increase support for family caregivers in underserved communities.
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(Donovan, Drane, Van Houtven) Integrating the Caregiver Into the Health Care Team • Identify and assess a primary family caregiver at the time of patient diagnosis.
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• Provide navigators to help caregivers access resources and sup ports; draw on other team members, such as community health workers and social workers, to coordinate needs, strengths, and supports. (Applebaum, Christensen, Drane, Gee, Jones, Kirch, Van Houtven)
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(Kent) Advancing Policy Opportunities to Support Family Caregivers • Develop a uniform approach to identifying and recording fam ily caregivers who accompany a patient to a health care visit.
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Despite many positives to caring for a family member, Link observed that, if intense, long, and difficult enough, it will likely result in serious physical and emotional conditions and serious impacts on careers and family finances. Link explained that the ACL is responsible for implementing the requirements of the RAISE Family Caregivers Act of 20175 and the Supporting Grandparents Raising Grandchildren Act.6 Between those two 4 For more information on the diversity of the caregiving experience, see https://www.
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; and a national family caregiving strategy, which the advisory council and Supporting Grandparents Raising Grandchildren Advisory Council are developing and will be implementing together. Link explained that the advisory councils' efforts were combined to take a cohesive approach to developing an inclusive and respectful national response to the needs of family caregivers.
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Link explained that the strategy will seek to eliminate redundancies across agencies and promote greater adoption of the following: • Person- and family-centered care across settings; • Assessment and service planning; • Information, education and training supports, referral and care coordination; • Respite options; • Financial security and workplace issues; and • Service delivery based on the performance, mission, and purpose of a program. The national caregiving strategy, observed Link, will speak directly to the diverse needs of family caregivers and diversity and inclusion issues.
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4. Recognize the importance of direct care workers: The development of a robust, well-trained, and well-paid direct care workforce is critical to ensuring family caregivers and the people they support have access to reliable, trusted supports and assistance when and where they need it.10 Link pointed out that the strategy will not be mandatory, and the RAISE Act does not give ACL any enforcement authority.
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Reactor Panel Sheria Robinson-Lane, assistant professor in the Department of S ystems, Populations, and Leadership at the University of Michigan School of Nursing, shared her perspective that it is imperative that the national strategy be inclusive in its approach to what a modern family looks like and the different types of caregivers who need information in ways that allow them to live an optimal life. She pointed out that this is not just about improving access to care and services for people who are dealing with disability, chronic illness, dementia, and other health conditions in a way that relieves some of the caregiver's burden.
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Christensen explained that Indian Country deals with many social determinants of health that make caregiving challenging. For example, one third of the Navajo Nation homes on tribal land do not have electricity or running water,12 making it imperative to adjust a care plan that typically includes a mechanical device.
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Increased education and training for families and optimizing public health nursing and the reservation's "community health representatives" are needed to support family caregiving. Bynum noted the importance of reverse translation, which involves applying innovations and lessons learned from communities to inform a more robust national strategy.
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Responding to a question about plans to disseminate the national strategy, Link explained that after ACL delivers that to Congress in the early fall, it will convene a joint meeting of the two advisory councils to release the strategy publicly, as it did for the initial reports. ACL will also look broadly
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Christensen agreed that it is best to approach caregiving as a family, set ground rules and goals, identify a spokesperson, and hold periodic conversations, since the caregiving approach is fluid as the needs of care change with advancing illness. She has found that involving palliative care specialists, clinicians, community health workers, or other local service providers in these regular, recurring conversations has been successful in creating a strong family plan and can be a crucial anchor throughout.
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She emphasized that reaching the finish line will require action from communities, health systems, health care payers, and others. UNDERSTANDING THE NEEDS OF FAMILY CAREGIVERS Jennifer Ballentine, executive director of the CSU Shiley Haynes Institute for Palliative Care, introduced the second session by noting that it would focus on the diverse needs of family caregivers through stories shared by speakers that identified a specific need and proposed a solution.
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"Community is the key that makes up for system gaps," she said. Cathy Bradley, professor and associate dean for research at the C olorado School of Public Health, University of Colorado at Denver, and deputy director of the University of Colorado Comprehensive Cancer Center, said that as a health economist, her research interest lies at the intersection between work and health and the tradeoffs that individuals and caregivers have to make when faced with serious illness.
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Shu shared that their goal was to bring him home, regardless of how long or short his life would be. Shu explained that their palliative care team taught them how to care for their son and make medical decisions for him based on their values.
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The waiver budget enables a family caregiver to be paid 40 hours a week. Though the $17/hour did not cover all their needs, it did allow Shu's husband to only work one job (rather than multiple jobs)
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Bradley called for Minnesota's waiver policy to be systematized nationally. She noted that during the pandemic, the state allowed family caregivers to be paid for more than 40 hours a week, a recognition of the scope of the caregiver shortage.
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Kirch emphasized that palliative care is a critical resource, as is families learning from families. Navigators can also be a good resource to connect caregivers to services.
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Providers also need to be conscious of what a family is going to carry forward into bereavement; they are always going to wonder if they could have done more. Kirch, taking that idea one step further, said it is also important for clinicians to recognize anticipatory grief in themselves and the role it might play in their decisionmaking process regarding the desire to continue treating a patient when the family and patient are ready to move to palliative care and hospice.
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Kirch called for businesses to demand that insurance companies involve caregivers in benefit design to address some of these challenges. Ballentine suggested offering family caregiving insurance, similar to long-term care insurance.
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PROVIDING EFFECTIVE SUPPORT FOR FAMILY CAREGIVERS A Dementia-Friendly Program for African American Faith Communities and Families Living with Dementia Fayron Epps, assistant professor at Emory University's Nell Hodgson Woodruff School of Nursing, opened the third session, which focused on exemplars of caregiver support programs. Epps described Alter, a faith-based community program.
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and eight additional activities around education, support, and worship that the churches can customize. An education activity, for example, might be holding Memory Sunday, a yearlong collaboration between faith communities and health and community organizations focused on raising awareness about memory loss, aging, and Alzheimer's disease in the African American community that culminates 20 See https://www.usagainstalzheimers.org/health-disparities-race-and-alzheimers (accessed August 16, 2022)
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. 22 For more information on the Geriatric Workforce Enhancement Program, see https:// www.hrsa.gov/grants/find-funding/hrsa-19-008 (accessed August 4, 2022)
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"We are trying to expand and create an infrastructure to be able to support Black churches as we address family caregivers that are supporting those living with dementia," said Epps. Malcoma Brown-Ekeogu, a member of Alter's advisory committee, is a caregiver for her husband who has the behavioral variant of frontal temporal degeneration.
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. Many also find it difficult to speak with their loved ones and the health care team about advance care planning, what to expect, and how to plan, so in addition to education and support through various psychotherapeutic approaches, the clinic offers communication skills training.
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For Applebaum, documenting caregiver data in a medical record should be part of the standard of care (Applebaum et al., 2021)
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Applebaum says the clinic can improve distress screening to identify caregivers who truly need its supportive services in contrast to those who are distressed due to other reasons, such as financial concerns, and would benefit more from speaking with patient financial services. The clinic is also piloting the CancerSupportSource-Caregivers tool (Zaleta et al., 2021)
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"It really is unacceptable that we leave it up to families and loved ones to do this on their own." In Gee's view, ways of providing financial support to family caregivers need to be developed along with ways to expand access to home health aides. Gee also proposed that a death doula should be part of the standard of care.
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He and his husband felt as if they were passengers along for a ride on a turbulent roller coaster, but the programs they participated in put them back in control and allowed them to focus on the decisions they could control. "We were able to get clarity on where we stood individually and as a couple, and this allowed us to have better connections with our primary care team, our family, and our friends," said Gee.
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. • The vastness of this territory creates challenges to reach people and provide services for them, exacerbated by the limited home care services that are available and the extensive distances between clinics and homes.c Fourteen grocery stores are spread across the Navajo reservation's 27,000 square miles, which, together with a high poverty rate, creates a serious food insecu rity problem.d aSee https://www.ihs.gov/ (accessed August 11, 2022)
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At the heart of the IHS family caregiving strategy is ensuring that the diverse needs of Indigenous communities are included. IHS wants to develop reliable, sustainable support systems for family caregivers and increase its work with partners to provide information and educate tribal communities about family caregiving.
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It was an hour away but half the distance that his mother had to travel for treatment. IHS caregiver support services were limited, and once again, he lacked resources for how to cope with and relieve the stress of being the primary caregiver.
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The Advanced Illness Care Program (AICP) ,28 a lay care navigator intervention designed to support people with serious illness and their family caregivers in Alameda County, Contra Costa County, and San Francisco, is the centerpiece of ACCA's work.29 The church-based AICP systematically addresses five program cornerstones.
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By the end of the program, 55 percent of the participants have completed advance directives, which Bell noted is astonishing given the much lower completion rate in the African American community nationwide. Bell explained that the caregiving cornerstone draws on resources such as referrals to in-home support services, respite care, and financial assistance applications, as well as tools specific to the programs.
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The survey was sent to a random sample of people in church on that Sunday in 201931 and shows that about 15 percent of congregants are caring for someone with an advanced illness, with 43 percent of them providing care 30 See https://www.care-alliance.org/impact (accessed September 7, 2022)
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ACCA has developed discussion guides to accompany the film, and it trains pastors and faith leaders to host screenings and community discussions about the topic. ACCA also hosts dinners that invites palliative care physicians to join with pastors to break bread, share a meal, talk about common experiences, and discuss ways of supporting people with serious illness and their family caregivers.
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Jones shared that a key challenge she experienced as she became more anchored in the program and it was getting more referrals from larger health care systems was how difficult it was to form a relationship with people who were already feeling isolated by the medical institutions where they were receiving care. She explained that when she shares her story about the challenges she faced providing care for her mother when she was hospitalized during the COVID-19 pandemic, some of those reluctant caregivers start bonding with her and suddenly feel that they have someone who understands what they were going through.
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He does not remember going to the UPMC GynOnc Family Caregiver Advocacy, Research, and Education (CARE) Center and says someone must have invited him because he would have never sought emotional help on his own.
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. Donovan noted that she and her colleagues built the CARE Center on a strong theoretical foundation and descriptive and correlational pilot study data with family caregivers (Donovan and Ward, 2001; Donovan et al., 2007, 2008; Ward et al., 2009)
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This theoretical foundation derives from the representational approach to patient education (see Table 1)
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Staff contacts that caregiver, through proactive outreach, staff and student rounds on the inpatient clinic, or clinician referral, and conducts a brief assessment using the distress thermometer and an adapted problem list for family caregivers (Figure 3)
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Donovan noted key challenges, including difficulty with electronic health record integration, data collection, management, balancing clinical care with research assessment, and demonstrating outcomes to ensure that UPMC continues to appreciate the value of the center and support it. She said that she and her colleagues are working to implement a mobile health app, develop an implementation strategy by training UMPC students and fellows to advance the work, and move toward further integration with the electronic health record.
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Oden, ACCA's assistant director, opened the discussion by asking the panelists for ideas on how individuals would start caregiver support programs in their own communities similar to the ones featured in the presentations. Epps responded that a key first step is to hear from the community to identify what it wants.
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She informs families that they can attend multiple support groups and try different groups to find one that best suits their needs. Donovan said her team has been trying to identify a core set of risk f actors for family caregivers to use across settings.
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He added that as a nursing student, he is learning that many of the norms he experienced at MSK are not necessarily the norms at other health care systems. INTEGRATING FAMILY CAREGIVERS INTO THE HEALTH CARE TEAM Caregiving for a Loved One with Alzheimer's Disease Jason Karlawish, professor of medicine in the Perelman School of Medicine, co-director of the Penn Memory Center at the University of Pennsylvania, and caregiver for his father with mild cognitive impairment from Alzheimer's disease, led off the fourth session on integrating family caregivers into the health care team.
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Including Family Caregivers in Patient Health Care Teams Courtney Harold Van Houtven, research career scientist at the Center of Innovation to Accelerate Discovery and Practice Transformation, part of the Durham Veterans Affairs (VA) Health Care System, and professor in the Department of Population Health Science at Duke University School
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. In 2014, Van Houtven began directing the Partnered Evaluation Center, which evaluated the VA's Caregiver Support Program, 35 the largest such program in the nation.
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. Van Houtven shared that a survey of caregivers' experiences on the veteran care team for post-9/11 veterans found that 56 percent of the care givers said the patient's health care team never asked for their ideas about managing their veteran's health; 69 percent said the patient's health care team never asked whether they have the skills or training they need to help their veterans; and 72 percent said the patient's health care team never asked if they needed help at home in managing their veteran's health condition (Van Houtven et al., 2019b)
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Van Houtven commented that the definition of inclusive care is inviting the caregiver to participate in shared decision making and treatment planning (Shepherd-Banigan et al., 2021)
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Champions have been identified at each site who are spreading awareness, recruiting providers, and trying to change the culture to make caregiver inclusion a standard of care. Van Houtven explained that the VA has rolled out its own caregiverlinked electronic health record for those who are engaged in caregiver support services.
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. Moving from this example of the importance of including family members in care, Fried argued that it is the responsibility of the health care team to prepare caregivers to serve as surrogate decision makers and also to recognize the huge stress and burden that caregivers bear in the role of decision makers.
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. However, when asked about what their loved ones value in terms of their goals of care, only 20 percent of the caregivers were actually knowledgeable.
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DesRoches noted that a win she had early on was getting her aunt to give her proxy access to her patient portal, which enabled her to see clinical notes, medications, and test results and communicate directly with the health care team about issues that would anger her aunt if they were raised at a clinical visit. DesRoches added that such access also enabled her to prevent a serious medication error in an emergency department, where staff was about to use a 2-year-old medication list and inappropriately discharge her aunt.
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This information is stored in a structured field in the electronic health record and easily accessible to the clinician. Feedback loops for clinical care AI enabled feedback for education and resources Patient/Care partner generated content Effective use of existing functions Registering for proxy account FIGURE 4 Supporting care partners with health information technology on a continuum of complexity SOURCE: DesRoches presentation, May 16, 2022.
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Discussion Sara Damiano, national director of palliative care at Ascension40 and session co-moderator with Allison Applebaum, opened the discussion session by commenting on a key theme reinforced throughout the speakers' presentations: the importance of communication, shared decision making, and conversations about goals of care. She asked Fried if she could talk more about the barriers that impede conversations between family caregivers and patients and ways of overcoming them.
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He shared that based on what he sees in the hospital, how caregivers are viewed by health care teams does not have a great deal of nuance: they see them as valued allies and heroes or as the enemy or an obstruction. Tulsky wondered if the caregiver's extended mind and self can cause con flict with the patient or clinician.
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Van Houtven added that not having a caregiver field in the patient's electronic health record is an equity issue because caregivers who self-nominate are often the least disadvantaged. Having a system where everyone is equitably asked about their caregiver or has their own caregiver-linked record is a way to make sure that everyone has the opportunity to identify one.
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Van Houtven agreed and said the investigators have done qualitative interviews with caregivers who have had health care providers who have taken this training and they report feeling more included and have a more positive view of their engagement with the care team. Providers, for their part, report
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Drane asked the panelists to comment on how to consider the needs of the caregiver while also protecting the quality of life as defined by the person for whom they are caring. Van Houtven said the challenge is that the United States has a system where most people do not have the resources to provide the kind of care that their loved ones want.
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DesRoches said that in her experience, a physician or nurse champion in an organization sees the need and creates the registry, and it develops over time. Van Houtven said that the VA's caregiver registry grew out of the Caregiver Support Program, but a primary care provider who identifies a caregiver cannot automatically create the record on their own.
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RESEARCH CHALLENGES AND OPPORTUNITIES Pamela Hinds, executive director of the Department of Nursing Science and professional practice and quality research integrity officer at C hildren's National Hospital, professor of pediatrics in the School of Medicine and Health Sciences at George Washington University, and co-moderator of the fifth session, with Cathy Bradley, began by asking a series of questions: • How can the nation address needed research on family caregivers? • How can the nation focus -- and remain focused -- on what family caregivers find important while also addressing what health care systems find important about family caregiving?
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"It is foundational to supporting and expanding the care that we are g iving, the services we are providing, and the approach that we are taking to patient services, as well as caregiver support and services," said Angove. She encouraged those who work in direct service, policy, and support spaces to think of research as a complementary and supportive means of expanding their work and maximizing its impact.
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Another challenge researchers face is that caregivers, particularly those who are from historically underrepresented and underserved groups and struggling with needs related to income security, health care, food, housing, and employment, are already under intense time and resource burdens and juggling their own needs with those of their loved ones. As a result, they may not have the energy or time to participate in research.
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Noting the important gaps in the impact of research on family caregiving, Wolff said that a foundational challenge with descriptive research relates to measurement. "There is notable ambiguity in the terminology that we use to communicate with ourselves and with the public about what we mean, variable definitions that are used in our research studies to identify caregivers, and a recognition that caregiving exerts both positive and negative effects on wide-ranging outcomes from physical and emotional health to quality of life to economic well-being," said Wolff.
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As the 2016 National Academies report Families Caring for an Aging America stated, studies involving small samples of family caregivers of people with dementia who are at-risk for negative psychological effects have generated the primary evidence base for interventional research (NASEM, 2016)
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Wolff observed that it is also important that individual studies provide clear and consistent nomenclature, definitions, and internally consistent estimates. Wolff also called for a critical review of the field to assess strengths and weaknesses and identify where to direct future research investments, such as establishing the infrastructure that facilitates surveillance to assess the impacts of policy and practice activities and generating progress related to expanding caregiver supports and services over geographies and p roviders.
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. 45 See https://hints.cancer.gov/ (accessed August 5, 2022)
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She called on foundations and professional societies to build deliberate bridges across these disciplinary divides as a means of sharing methods and practices. Kent also called for common data elements across the illness context, which she said will "greatly assist in providing more reproducible, rigorous and comparable caregiving research." Similarly, Kent identified an opportunity for gerontology, palliative care, nursing, and condition-specific interests to collaborate on research studies.
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As an example, her institution has enCompass Carolina, a navigator-assisted program targeted to rural cancer caregivers and designed to identify social support needs and connect them to people and resources. It is an adaptation of the electronic social network assessment program (Reblin et al., 2018, 2022)
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. 50 See https://www.carecantwait.org/about (accessed August 5, 2022)
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Robinson-Lane called on organizations that support the design of caregiver interventions to think about how they can be more culturally congruent. For example, the loved ones of Black family caregivers are often diagnosed late in the progression of dementia and more likely to receive a diagnosis of general or mixed dementia (a combination of vascular dementia and Alzheimer's disease)
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Of the 15 standards, two focus on management accountability for ensuring institutions are providing inclusive care and regularly assessing activities to ensure they are providing inclusive care and have internal organizational accountability. Turning to the importance of culturally responsive research protocols, Robinson-Lane explained that this should involve engaging focus groups prior to launching a study to ensure that the research findings will be appro priate for the groups that the research will involve.
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Beyond that, she said, it is important to recognize that the diversity of different kinds of study designs are going to be crucial to deploy to be able to actually change care delivery. Different designs will also be necessary to recognize both the individuals who are living with serious illness or disability and the
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Bigger wins are possible, she said, when health systems are willing to adopt a standardized set of elements. Robinson-Lane noted that it is standard practice in hospice and palliative care to collect information on multiple caregivers in the electronic health record.
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Kent noted the many conversations in implementation science about designing research studies with community partnerships and investment in mind from the start. In fact, she said, it is becoming less likely for implementation science studies to get funding unless they include both in the design from the outset.
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Responding to a question about how her team has been able to recruit approximately 200 Black family caregivers of individuals with dementia during the pandemic, Robinson-Lane explained that one strategy was to use social media, which required being thoughtful about which platforms the intended study population uses and engaging experts outside of her domain -- and obtaining the funding to pay them and for the campaigns -- because the team did not know how to best use social media and marketing techniques. Robinson-Lane added that once the pandemic allowed for in-person activities, the approach was to go to community events to engage families where they are.
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Reaching people in those situations might make them more likely to participate, she said. Audience Question and Answer Session Donovan led off the audience question and answer session by commenting that there is a great deal of knowledge about what works for family caregivers in certain settings or with certain populations.
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Participant Warren Hebert, from the Home Care Association of Louisiana and an adjunct with the Rutgers Institute for Health, Health Care Policy, and Aging Research, asked about progress made in the discussions about including a family caregiver section in every patient's plan of care. Wolff cited a major initiative around patient eCare planning led by the Agency for Healthcare Research and Quality and the National Institute of Diabetes and Digestive and Kidney Diseases in conjunction with the Health Level 7 organization.53 Wolff explained that the issue, as she understands it, is that caregiving can change over time, in terms of both care needs and who is in the role.
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Her organization, for example, goes to public housing and talks to tenant associations to elevate the community voice in a different way. POLICY OPPORTUNITIES TO SUPPORT FAMILY CAREGIVERS The final session explored policy opportunities to support family caregivers and was co-moderated by Amy Melnick, executive director of the National Coalition for Hospice and Palliative Care, and Rani Snyder, vice president of programs for The John A
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Reinhard described how this raised awareness led to caregivers telling their stories, which also helped with legislative efforts. In fact, said Reinhard, 54 The CARE Act requires hospitals to identify and record the name of the family caregiver in the medical record, inform them when the patient is to be discharged or transferred, and provide them with education and instruction on the medical tasks they will need to perform at home.
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She noted that in Georgia, which had recently passed its CARE Act legislation in April 2022, AARP will be running an implementation campaign in collaboration with local organizations and advocates. Michael Reese-Wittke, vice president for policy and advocacy at the National Alliance for Caregiving, asked Reinhard to talk about ways of coupling what the CARE Act does with implementation and assessments.
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In terms of exemplars, Teshale said that every state has different populations, needs, and approaches to how it thinks about supporting family caregivers. California, through caregiver resource centers established in the 1980s, is providing a set of services and supports targeted to caregivers of people with adult onset cognitive issues.
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Getting federal funding to support state implementation of RAISE Act recommendations, said Reese-Wittke, will take a coalition of advocates and the state task forces to decide which parts of the RAISE Act to first seek funding for. Melnick asked the panelists to comment on the opportunities to use policy levers to improve caregiving policies from the perspective of equity.
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In contrast, she said, traditional fee-for-service arrangements do not always recognize the important work of members of the care team, such as the caregiver, outside of the office visit. In terms of benefit design in Medicare and Medicaid plans, changes being seen include incorporating benefits that address social determinants of health and social risk factors and being able to classify these benefits as medical expenses versus nonmedical or administrative costs.
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She acknowledged that value-based purchasing can generate savings but emphasized that caregivers do not see those savings. Plote noted that health insurance providers are trying to craft benefits that can help the caregiver in their daily lives, such as providing respite services, addressing social determinants of health, and advocating for paid leave policies.
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Applebaum articulated that it is impossible to overestimate the long term benefit of linking distress screening with the CARE Act's provision to document caregiver data. She also was pleased to hear about the recommen dation to do that in the home care and hospital-at-home settings.
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WORKSHOP WRAP-UP Oyer, representing Campbell as well, summarizing points emphasized by speakers and participants, started with research being foundational to policy. Research opportunities include identifying, measuring, and testing interventions that matter most to family caregivers and determining what important facts health systems must know about them.
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CAREGIVER REMARKS Two family caregivers, Dannell Shu and Abena Apau Buckley, concluded the workshop with their reflections. Buckley, who cared for her husband and two small children when he was diagnosed with glioblastoma, started by saying that something that would have improved her caregiving experience and quality of life would have been to have more aligned support from paid case management coordinators.
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Shu said she seconded every word Buckley shared and reiterated the mantra, "Nothing about us without us. Nothing about family caregivers without the involvement of family caregivers," she said, noting that the workshop had been exceptional in that regard.
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She challenged the workshop participants to think about how to bring caregivers to the table together with those who have the authority to take action. Having given family caregivers the final word, the workshop adjourned.
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2021. Implementing the RAISE Family Caregivers Act.
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2020. The importance of religiosity to the well-being of African American older adults living with dementia.
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2022. The Alter program: A nurse-led, dementia-friendly program for African American faith communities and families living with dementia.
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Family Caregivers Act initial report to Congress. Washington, DC: Administration for Community Living.
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2017. From home alone to the CARE Act: Collaboration for family caregivers.
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2018. Family caregivers of older adults, 1999–2015: Trends in characteristics, circumstances, and role-related appraisal.
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