- Email: [email protected]
Family Caregiving: A Vision for the Future
Accepted Manuscript Title: Family Caregiving: a Vision for the Future Author: Richard Schulz, Sara J. Czaja PII: DOI: Reference:
S1064-7481(17)30381-0 http://dx.doi.org/doi: 10.1016/j.jagp.2017.06.023 AMGP 881
To appear in:
The American Journal of Geriatric Psychiatry
Received date: Accepted date:
29-6-2017 29-6-2017
Please cite this article as: Richard Schulz, Sara J. Czaja, Family Caregiving: a Vision for the Future, The American Journal of Geriatric Psychiatry (2017), http://dx.doi.org/doi: 10.1016/j.jagp.2017.06.023. This is a PDF file of an unedited manuscript that has been accepted for publication. As a service to our customers we are providing this early version of the manuscript. The manuscript will undergo copyediting, typesetting, and review of the resulting proof before it is published in its final form. Please note that during the production process errors may be discovered which could affect the content, and all legal disclaimers that apply to the journal pertain.
Family Caregiving: A Vision for the Future
Richard Schulz, Ph.D., University of Pittsburgh, PA Sara J. Czaja, Ph.D., University of Miami Miller School of Medicine, Miami FL
Corresponding Author: Richard Schulz, PhD, Department of Psychiatry and University Center for Social and Urban Research, University of Pittsburgh, 3343 Forbes Avenue, Pittsburgh, PA 15260. Fax: 412-624-4810. Telephone: 412-624-5442. Email: [email protected]
Conflicts of Interest and Source of Funding: None to report.
Key words: Family caregiving, health care policy, research policy
Word Count: 3458
Page 1 of 16
Paper Highlights
This article provides a comprehensive research and health care policy agenda for family caregiving in the U.S.
A confluence of structural and process barriers impedes effective partnerships between family caregivers and providers of patient care.
Optimizing the role of family caregivers will minimally require systematic identification, assessment, and support of family caregivers throughout the care delivery process.
Research is needed to develop assessment tools, decision algorithms and procedures for integrating caregivers into existing clinical practices.
Payment reforms are needed to motivate health care providers to engage, assess, and support caregivers.
Abstract The authors of this review both served on the National Academy of Science, Engineering, and Medicine Committee which produced the report, “Caring for an Aging America”. In this commentary we summarize key findings and recommendations most relevant to clinicians and researchers in geriatric psychiatry and related disciplines. The report notes the growing prevalence of family caregiving in the U.S, especially those caring for high need patients with multiple chronic conditions, disability, and/or cognitive impairment. To support the capacity of family caregivers to perform critical caregiving tasks, the report recommends a major shift in health care policy toward collaborative partnerships among patients, their defined family, and
Page 2 of 16
providers of care. Optimizing the role of family caregivers will minimally require systematic attention to the identification, assessment, and support of family caregivers throughout the care delivery process. Research is needed to develop the tools and protocols to efficiently assess caregivers, and identify ways in which they can be integrated into existing clinical practices. We also need research to identify how to best implement, maintain and evaluate caregiver support programs within clinical and community settings. The Centers for Medicare and Medicaid Services should be charged with developing, testing, and implementing provider payment reforms that motivate providers to engage and support family caregivers. Payment reforms should include clearly articulated performance standards that hold providers accountable for caregiver engagement, training, and support by explicitly including caregiver outcomes in quality measures.
Readers of the American Journal of Geriatric Psychiatry are familiar with family caregiving as a research topic that is frequently included in the journal. By our count, over 200 papers and several special issues have been devoted to this topic, describing the prevalence of caregiving, its physical and psychological impact on family members, biological mediators of adverse health effects, and treatment strategies for both caregivers and patients (http://www.ajgponline.org). This pattern can be found in numerous other professional journals, making caregiving one of the most widely researched topics in the social, behavioral, and health sciences.
Page 3 of 16
The combination of a vast scientific literature, the emergence of family caregiving as a public health issue in the U.S., and the support and advocacy of private foundations and government agencies led the National Academy of Sciences, Engineering, and Medicine to convene a committee on family caregiving for older adults. The charge of the committee was to “develop a report with recommendations for public and private-sector policies to support the capacity of family caregivers to perform critical caregiving tasks, to minimize the barriers that family caregivers encounter in trying to meet the needs of older adults, and to improve health care and long-term services and supports provided to care recipients,” pp. 18-19 (1). The report resulting from that committee, “Families Caring for an Aging America”, was published in late 2016. In this commentary we summarize key findings and recommendations and reflect on their implications for the readership of the American Journal of Geriatric Psychiatry. In doing so, we also highlight some needed areas of research. Both authors of this report were members of the committee. The Prevalence and Impact of Family Caregiving Nearly 18 million family caregivers, broadly defined as relatives, partners, friends or neighbors, provide care and support to older adults because of limitations in their physical, mental or cognitive functioning (1). Millions more provide care and support to younger individuals with serious illness and disability (2). Family caregivers arrange and attend medical appointments, participate in routine and high-stakes treatment decisions, coordinate care and services, help with daily tasks such as dressing and bathing, manage medicines. They also obtain and oversee the use of medical equipment, ensure that needs for food and shelter are met and manage insurance and financial issues. Family members have always been the primary source of support and assistance to older parents, grandparents, and other family members during times of
Page 4 of 16
illness and when they can no longer function independently. What has changed in the last few decades is that this job has become more complex and longer lasting because of medical advances, the shift in healthcare practices that involve shorter hospital stays and the management of chronic illnesses in home settings, and increased longevity (1). The committee was especially interested in the prevalence and impact of caregiving for high need patients where the demands on the caregiver are particularly intense. High patient need and caregiving intensity can be gauged in a number of different ways, including the hours of care provided, type of patient illness, or patient limitations in activities of daily living. One shortcoming of these approaches is that they don’t capture the cumulative or longitudinal nature of the caregiving experience. We recently analyzed the National Health and Aging Trends Study (NHATS) and National Study of Caregiving (NSOC) data (3, 4) to identify the types of tasks performed by caregivers and caregiver outcomes for three types of high need older patients: (a) patients who have three or more chronic diseases and a functional limitation in their ability to care for themselves or perform routine daily tasks, defined by the Commonwealth Fund as high need and high cost patients (5); (b) patients with a diagnosis of probable dementia; and (c) patients at the end of life, defined as individuals who died within one year of baseline assessment. Together, these three groups represent some of the highest cost patients in the U.S., accounting for the majority of health and long term care expenditures. (6-9). Inasmuch as there is overlap among the three groups, we also examined all possible combinations of these three groups to explore the cumulative effects of, for example, caring for patients who have multiple chronic conditions, dementia, and are at end of life. This overlap is clearly illustrated in Figure 1 with corresponding population estimates based on NHATS (patient population, N = 7609). In this nationally representative sample of adults (NHATS) aged 65 and
Page 5 of 16
over, 35% of 35.3 million older adults met criteria for at least one of the three groups of interest. Six percent met criteria for at least two categories, and slightly less than 1% (290,000 persons) met criteria for all three; they had dementia, at least three chronic conditions and a functional limitation, and died within a year. We also show in Figure 1 the proportion of patients in each group who received help from an unpaid caregiver, ranging from 75% of patients at the end of life to 97% for patients who met criteria for all three groups. Caregivers of high need patients are more likely to provide help with more caregiving tasks and spend more hours doing so when compared to caregivers of low need patients. With a few exceptions, the level of caregiver help provided is highest among caregivers caring for individuals who meet criteria for all three groups, followed by caregivers caring for persons meeting criteria for two of the three groups. An extensive literature shows that caregivers are at increased risk of physical and psychiatric morbidity (10, 11). They experience emotional distress, depression, anxiety, and social isolation. In addition, work and other family responsibilities are often disrupted. When the intensity and duration of caregiving is high, self-care and physical health of the caregiver may be impaired. In the NSOC sample, nearly half of all caregivers report emotional difficulty in caring for their loved one, and one fifth report financial and physical difficulty in providing care. These rates are consistently higher among caregivers of high need patients (12). The fact that psychiatric morbidity is a major outcome of intensive caregiving experiences and that dementia is a primary driver of adverse caregiver outcomes helps explain why caregiving is of particular relevance to psychiatric clinicians and researchers. Unfortunately, often times the sole focus of clinicians is on the older adult patient, and the needs of the caregiver are overlooked. Committee Recommendations
Page 6 of 16
A confluence of structural and process barriers impedes effective partnerships between family caregivers and providers of patient care. The prevailing emphasis on supporting individual autonomy and safeguarding the privacy of personal health information limits family caregivers’ access to information that is appropriate and beneficial to their ability to effectively coordinate care and manage treatments. This issue has become particularly important because of the increased reliance on Electronic Health Records (EHRs). There are numerous issues that have yet to be resolved related to EHRs including, availability and access to EHR systems for lower SES caregivers, lack of technology skills, usability difficulties; and issues related to privacy and information sharing. Health care providers are not compensated for time spent educating family caregivers about patients’ medical conditions and treatments, nor are they trained to have those conversations. Although clinical assessments used to formulate treatment plans commonly include questions for patients about the availability of help, caregivers are not asked about their ability to provide care or their relevant knowledge, other sources of potential support, or contextual issues such as the nature of the home environment. Additionally, receipt of training in performing caregiving tasks is inconsistent at best. The availability and adequacy of family caregiving is simply assumed. The recent National Academies of Sciences, Engineering, and Medicine report (1) on family caregiving calls for transformation in the policies and practices affecting the role of families in the support and care of older adults, stating that today’s emphasis on person-centered care needs to evolve into a focus on person- and family-centered care, where family-centered care is defined as care that is centered in collaborative partnerships among patients, their defined
Page 7 of 16
family, and providers of care (13). We focus here on those policy recommendations most relevant to clinicians who interact with and care for family caregivers and their patients. Caregiver assessment. Caregivers’ circumstances vary widely and in ways that affect their availability, capacity, and willingness to assume critical responsibilities. Evidence from randomized clinical trials indicates that most effective interventions begin with an assessment of caregivers’ risks, needs, strengths, and preferences. Yet most health and Long Term Services and Supports (LTSS) providers do not assess the health, skills, employment status, or willingness of family caregivers to serve in the caregiving role, and provide them little, if any, training to carry out the complicated medical procedures, personal care, and care coordination tasks they are expected to provide. Indeed, the lack of systematic assessment of family participation in health and LTSS not only affects the experience of family caregivers and care recipients, it also precludes knowledge of how their involvement influences the quality of clinical care and social services. Further it undermines credible accounting of the value family caregivers bring to the health care delivery system and to society. Optimizing the role of family caregivers will minimally require systematic attention to the identification, assessment, and support of family caregivers throughout the care delivery process. How might this be achieved? First, caregivers need to be identified in both the care recipient’s and the caregiver’s medical record. This acknowledges their role as part of a care team and sensitizes providers to the importance of engaging the caregiver when making patient treatment plans. Second, caregivers should be screened to identify those at risk for adverse health outcomes, particularly depression and anxiety, and whose circumstances may place the person they care for in harm’s way. Achieving this goal will require new tools that assess caregivers’ strengths, limits, needs, and risks in relation to the range of tasks they are expected to perform.
Page 8 of 16
Assessments should minimally include caregivers’ health and functional status, their level of stress and well-being, their ability to perform required tasks, and the types of training and supports they might need to enact their role. Other issues that have particular relevance for the psychiatric community include family dynamics and potential problems with physical or psychological abuse, substance abuse or unsafe conditions. Assessments should be on-going and occur during all key provider patient/caregiver encounters, including wellness exams, physician visits, admission and discharge from hospitals and emergency rooms, and chronic care coordination and care transition programs. Key initial steps to implementing this recommendation will require identification and refinement of caregiver assessment tools appropriate to the care delivery context of the care recipient, identification and training of assessors, and evaluation of provider work flow to determine where and when assessments take place. The health, functional ability, and care needs of the patient as well as available resources should be key factors in determining the fit between patient needs and caregiver capacity, which in turn should inform the training and support needs of the caregiver. Supporting caregivers. Guidance on how best to support caregivers can be gleaned from a large body of intervention research aimed at improving caregiver and patient outcomes. Education and skills training improve caregiver confidence and the ability to manage daily care challenges. Training strategies that involve active participation of the caregiver are particularly effective in achieving positive outcomes. Counseling, self-care, relaxation training, and respite programs can improve both caregiver and patient quality of life. There is also an emerging body of evidence which indicates that technology-based interventions can be an effective and efficient alternative for delivering programs to enhance caregiver knowledge, skills and support.
Page 9 of 16
However, research in this area is still in its’ infancy and more robust studies are needed to address issues related to cost and reimbursement, technology access and how to best integrate technology with more standard clinical practices (14). Despite the demonstrated effectiveness of a wide range of caregiver services and supports, few of these intervention strategies have moved from research settings to everyday health and social service programs. Key questions that need to be addressed in pursuing widespread implementation of proven interventions include who should deliver these support strategies, where and when should they be delivered, how can they be integrated into the existing workflow of provider organizations, and who should pay for their delivery and evaluation? Mechanisms to maintain and evaluate these programs also need to be identified. The National Family Caregiver Support Program (15) of the Administration for Community Living is one example of a federal program that incorporates elements of evidence-based caregiver interventions into broad based service programs for caregivers. These relatively modest efforts should be scaled up and expanded. At the same time, we should continue to support efficacy trials aimed at developing and refining support strategies for caregivers, especially for caregivers from minority groups. With few exceptions, there are no financial incentives for providers to identify, assess, or support family caregivers or penalties for not doing so. For example, the Caregivers and Veterans Omnibus Health Services Act of 2010 (16) established a mechanism for reimbursement/workload credit for services provided to family caregivers, but the focus is primarily on caregivers of younger veterans (1). The Centers for Medicare and Medicaid Services should be charged with developing, testing, and implementing provider payment reforms that motivate providers to engage family and support caregivers. Payment reforms
Page 10 of 16
should include clearly articulated performance standards that hold providers accountable for caregiver engagement, training, and support by explicitly including caregiver outcomes in quality measures. Outcome measures should include caregiver satisfaction with provider encounters, adequacy of training and instructions provided, caregivers’ confidence and efficacy in performing required tasks, and the adequacy of support services provided. Enhancing competencies of health care and LTSS providers. Providers should see family caregivers not just as a resource in the treatment or support of a person, but rather as a partner who may need information, training, care, and support. Achieving and acting on that perspective requires that providers have the skills to recognize a caregiver’s presence, assess whether and how the caregiver can best participate in overall care, engage and share information with the caregiver, recognize the caregiver’s own health care and support needs, and refer the caregiver to needed services and supports. A wide range of clinicians are likely to interact with family caregivers. Professional organizations in social work and nursing have led the way in taking steps to establish standards for person- and family-centered care that includes the caregiver. Similar efforts are needed across other health care and social service professions, including psychiatry and psychology. Federal support is needed from the U.S. Department of Health and Human Services (HHS) for the development and enforcement of competencies for identifying, assessing, and supporting family caregivers by health care and human service professionals. Achieving this goal requires that specific competencies are identified by provider type, including competencies related to working with diverse family caregivers. These competencies should in turn shape the development of educational curricula and training programs designed to teach them. Professional societies and accrediting bodies should develop educational curricula and support their systematic evaluation
Page 11 of 16
and implementation, and should convene and collaborate with state agencies and professional organizations to incorporate competencies into standards for licensure and certification. Conclusion and Future Directions The availability of family caregivers in the future is threatened by the higher rates of childlessness among baby boomers, smaller and more geographically dispersed families, the increase in non-traditional family structures, and increasing participation of women in the labor force (2). At the same time, advances in medicine that save and extend lives and the changes in health care practices increase the duration, complexity, and technical difficulty of care required by individuals with serious illness and disability. Family caregivers will continue to play a vital role in existing health care and LTSS systems. However, their willingness to provide care and their effectiveness in doing so will depend on fundamental changes in the extent to which we formally recognize them as key contributors to the health of their relatives, integrate them into the formal provider systems, and support them to do their job. The stakes are high, particularly for high need, high cost patients whose quality of life critically depends on the availability of a family caregiver, and for society as a whole responsible for providing high quality and costeffective care. Further, despite the vast scientific literature related to caregiving, more research is urgently needed to develop the tools and protocols to efficiently assess caregivers, and identify ways in which they can be integrated into existing clinical practices. We also need research to identify how to best implement, maintain, and evaluate evidence-based caregiver support programs within existing clinical and community settings.
REFERENCES
Page 12 of 16
1. Schulz R, Eden J (eds): Families Caring for an Aging America. Washington, DC, National Academies of Sciences, Engineering and Medicine, The National Academies Press, 2016
2. Schulz R, Tompkins CA: Informal caregivers in the United States: Prevalence, caregiver characteristics, and ability to provide care, in National Research Council, The Role of Human Factors in Home Health Care: Workshop Summary. Washington, DC, The National Academies Press, 2010, pp. 117-143
3. National Health and Aging Trends Study. Produced and distributed by www.nhats.org with funding from the National Institute on Aging (grant number NIA U01AG32947)
4. National Study of Caregiving. Produced and distributed by www.nhats.org with funding from the U.S. Department of Health and Human Services’ Office of the Assistant Secretary for Planning and Evaluation in cooperation with the National Institute on Aging (grant number NIA U01AG32947)
5. Hayes SL, Salzberg CA, McCarthy D, et al: High-need, high-cost patients: Who are they and how do they use health care—a population-based comparison of demographics, health care use, and expenditures. New York, NY, The Commonwealth Fund, August 2016
Page 13 of 16
6. Kelley AS, McGarry K, Gorges R, et al: The burden of health care costs for patients with dementia in the last 5 years of life. Ann Intern Med 2015; 163:729-736
7. Hurd MD, Martorell P, Langa KM: Monetary costs of dementia in the United States. New Engl J Med 2013; 369:489-490
8. Riley GF, Lubitz JD: Long-term trends in Medicare payments in the last year of life. Health Serv Res 2010; 45:565-576
9. Hogan C, Lunney J, Gabel J, et al: Medicare beneficiaries' costs of care in the last year of life. Health Aff 2001; 20:188-195
10. Schulz R, Sherwood, P: Physical and mental health effects of family caregiving. Am J Nurs 2008; 108:23-27
11. Schulz R, O’Brien AT, Bookwala J, et al: Psychiatric and physical morbidity effects of Alzheimer’s disease caregiving: Prevalence, correlates, and causes. Gerontologist 1995; 35:771-791
12. Wolff JL, Spillman BC, Freedman VA, et al: A National profile of family and unpaid caregivers who assist older adults with health care activities. JAMA Intern Med 2016; 176:372-379
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13. National Quality Forum. Priority Setting for Healthcare Performance Measurement: Addressing Performance Measure Gaps in Person-Center Care and Outcomes. August 15, 2014. Available at: https://www.qualityforum.org/Publications/2014/08/Priority_Setting_for_Healthcare_Per formance_Measurement__Addressing_Performance_Measure_Gaps_in_PersonCentered_Care_and_Outcomes.aspx. Accessed June 28, 2017
14. Czaja SJ, Lee CC, Schulz R: Quality of life technologies in supporting family caregivers, in Quality of Life Technology Handbook. Edited by Schulz R. Boca Raton, FL: CRC Press/Taylor and Francis Group, 2013, pp. 245-260
15. Administration for Community Living: National Family Caregiver Support Program (NFCSP). Available at: https://www.acl.gov/programs/support-caregivers/nationalfamily-caregiver-support-program. Accessed June 20. 2017
16. Congress.gov. Public Law 111-1563. May 5, 2010. Caregivers and Veterans Omnibus Health Services Act of 2010. Available at: https://www.congress.gov/111/plaws/publ163/PLAW-111publ163.pdf. Accessed June 20, 2017
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Fig. 1. Three Overlapping Patient Populations and Proportion with at least 0ne Unpaid Caregiver (CG)*
END OF LIFE
CHRONIC CONDS 6.7 million 78 % with CG
433,000 83 % with CG
440,000 75 % with CG
290,000 97% with CG
190,000 89 % with CG
1.35 million 89 % with CG
DEMENTIA 1.7 million 83 % with CG
CHRONIC CONDS = At least 3 chronic conditions and 1ADL/IADL limitation; Dementia excluded as chronic condition
END OF LIFE = Died within one year of baseline assessment DEMENTIA = Diagnosis of probable Dementia NONE OF THE ABOVE, 24.1 million, 67 % with CG
*Source: National Health and Aging Trends Study (NHATS, 2011,, N= 7609); non-institutionalized US older adults aged 65 and over, 35.3 million, weighted population estimates.
Fig. 1. Three Overlapping Patient Populations and Proportion with at least One Unpaid Caregiver (CG)*
Page 16 of 16
S1064-7481(17)30381-0 http://dx.doi.org/doi: 10.1016/j.jagp.2017.06.023 AMGP 881
To appear in:
The American Journal of Geriatric Psychiatry
Received date: Accepted date:
29-6-2017 29-6-2017
Please cite this article as: Richard Schulz, Sara J. Czaja, Family Caregiving: a Vision for the Future, The American Journal of Geriatric Psychiatry (2017), http://dx.doi.org/doi: 10.1016/j.jagp.2017.06.023. This is a PDF file of an unedited manuscript that has been accepted for publication. As a service to our customers we are providing this early version of the manuscript. The manuscript will undergo copyediting, typesetting, and review of the resulting proof before it is published in its final form. Please note that during the production process errors may be discovered which could affect the content, and all legal disclaimers that apply to the journal pertain.
Family Caregiving: A Vision for the Future
Richard Schulz, Ph.D., University of Pittsburgh, PA Sara J. Czaja, Ph.D., University of Miami Miller School of Medicine, Miami FL
Corresponding Author: Richard Schulz, PhD, Department of Psychiatry and University Center for Social and Urban Research, University of Pittsburgh, 3343 Forbes Avenue, Pittsburgh, PA 15260. Fax: 412-624-4810. Telephone: 412-624-5442. Email: [email protected]
Conflicts of Interest and Source of Funding: None to report.
Key words: Family caregiving, health care policy, research policy
Word Count: 3458
Page 1 of 16
Paper Highlights
This article provides a comprehensive research and health care policy agenda for family caregiving in the U.S.
A confluence of structural and process barriers impedes effective partnerships between family caregivers and providers of patient care.
Optimizing the role of family caregivers will minimally require systematic identification, assessment, and support of family caregivers throughout the care delivery process.
Research is needed to develop assessment tools, decision algorithms and procedures for integrating caregivers into existing clinical practices.
Payment reforms are needed to motivate health care providers to engage, assess, and support caregivers.
Abstract The authors of this review both served on the National Academy of Science, Engineering, and Medicine Committee which produced the report, “Caring for an Aging America”. In this commentary we summarize key findings and recommendations most relevant to clinicians and researchers in geriatric psychiatry and related disciplines. The report notes the growing prevalence of family caregiving in the U.S, especially those caring for high need patients with multiple chronic conditions, disability, and/or cognitive impairment. To support the capacity of family caregivers to perform critical caregiving tasks, the report recommends a major shift in health care policy toward collaborative partnerships among patients, their defined family, and
Page 2 of 16
providers of care. Optimizing the role of family caregivers will minimally require systematic attention to the identification, assessment, and support of family caregivers throughout the care delivery process. Research is needed to develop the tools and protocols to efficiently assess caregivers, and identify ways in which they can be integrated into existing clinical practices. We also need research to identify how to best implement, maintain and evaluate caregiver support programs within clinical and community settings. The Centers for Medicare and Medicaid Services should be charged with developing, testing, and implementing provider payment reforms that motivate providers to engage and support family caregivers. Payment reforms should include clearly articulated performance standards that hold providers accountable for caregiver engagement, training, and support by explicitly including caregiver outcomes in quality measures.
Readers of the American Journal of Geriatric Psychiatry are familiar with family caregiving as a research topic that is frequently included in the journal. By our count, over 200 papers and several special issues have been devoted to this topic, describing the prevalence of caregiving, its physical and psychological impact on family members, biological mediators of adverse health effects, and treatment strategies for both caregivers and patients (http://www.ajgponline.org). This pattern can be found in numerous other professional journals, making caregiving one of the most widely researched topics in the social, behavioral, and health sciences.
Page 3 of 16
The combination of a vast scientific literature, the emergence of family caregiving as a public health issue in the U.S., and the support and advocacy of private foundations and government agencies led the National Academy of Sciences, Engineering, and Medicine to convene a committee on family caregiving for older adults. The charge of the committee was to “develop a report with recommendations for public and private-sector policies to support the capacity of family caregivers to perform critical caregiving tasks, to minimize the barriers that family caregivers encounter in trying to meet the needs of older adults, and to improve health care and long-term services and supports provided to care recipients,” pp. 18-19 (1). The report resulting from that committee, “Families Caring for an Aging America”, was published in late 2016. In this commentary we summarize key findings and recommendations and reflect on their implications for the readership of the American Journal of Geriatric Psychiatry. In doing so, we also highlight some needed areas of research. Both authors of this report were members of the committee. The Prevalence and Impact of Family Caregiving Nearly 18 million family caregivers, broadly defined as relatives, partners, friends or neighbors, provide care and support to older adults because of limitations in their physical, mental or cognitive functioning (1). Millions more provide care and support to younger individuals with serious illness and disability (2). Family caregivers arrange and attend medical appointments, participate in routine and high-stakes treatment decisions, coordinate care and services, help with daily tasks such as dressing and bathing, manage medicines. They also obtain and oversee the use of medical equipment, ensure that needs for food and shelter are met and manage insurance and financial issues. Family members have always been the primary source of support and assistance to older parents, grandparents, and other family members during times of
Page 4 of 16
illness and when they can no longer function independently. What has changed in the last few decades is that this job has become more complex and longer lasting because of medical advances, the shift in healthcare practices that involve shorter hospital stays and the management of chronic illnesses in home settings, and increased longevity (1). The committee was especially interested in the prevalence and impact of caregiving for high need patients where the demands on the caregiver are particularly intense. High patient need and caregiving intensity can be gauged in a number of different ways, including the hours of care provided, type of patient illness, or patient limitations in activities of daily living. One shortcoming of these approaches is that they don’t capture the cumulative or longitudinal nature of the caregiving experience. We recently analyzed the National Health and Aging Trends Study (NHATS) and National Study of Caregiving (NSOC) data (3, 4) to identify the types of tasks performed by caregivers and caregiver outcomes for three types of high need older patients: (a) patients who have three or more chronic diseases and a functional limitation in their ability to care for themselves or perform routine daily tasks, defined by the Commonwealth Fund as high need and high cost patients (5); (b) patients with a diagnosis of probable dementia; and (c) patients at the end of life, defined as individuals who died within one year of baseline assessment. Together, these three groups represent some of the highest cost patients in the U.S., accounting for the majority of health and long term care expenditures. (6-9). Inasmuch as there is overlap among the three groups, we also examined all possible combinations of these three groups to explore the cumulative effects of, for example, caring for patients who have multiple chronic conditions, dementia, and are at end of life. This overlap is clearly illustrated in Figure 1 with corresponding population estimates based on NHATS (patient population, N = 7609). In this nationally representative sample of adults (NHATS) aged 65 and
Page 5 of 16
over, 35% of 35.3 million older adults met criteria for at least one of the three groups of interest. Six percent met criteria for at least two categories, and slightly less than 1% (290,000 persons) met criteria for all three; they had dementia, at least three chronic conditions and a functional limitation, and died within a year. We also show in Figure 1 the proportion of patients in each group who received help from an unpaid caregiver, ranging from 75% of patients at the end of life to 97% for patients who met criteria for all three groups. Caregivers of high need patients are more likely to provide help with more caregiving tasks and spend more hours doing so when compared to caregivers of low need patients. With a few exceptions, the level of caregiver help provided is highest among caregivers caring for individuals who meet criteria for all three groups, followed by caregivers caring for persons meeting criteria for two of the three groups. An extensive literature shows that caregivers are at increased risk of physical and psychiatric morbidity (10, 11). They experience emotional distress, depression, anxiety, and social isolation. In addition, work and other family responsibilities are often disrupted. When the intensity and duration of caregiving is high, self-care and physical health of the caregiver may be impaired. In the NSOC sample, nearly half of all caregivers report emotional difficulty in caring for their loved one, and one fifth report financial and physical difficulty in providing care. These rates are consistently higher among caregivers of high need patients (12). The fact that psychiatric morbidity is a major outcome of intensive caregiving experiences and that dementia is a primary driver of adverse caregiver outcomes helps explain why caregiving is of particular relevance to psychiatric clinicians and researchers. Unfortunately, often times the sole focus of clinicians is on the older adult patient, and the needs of the caregiver are overlooked. Committee Recommendations
Page 6 of 16
A confluence of structural and process barriers impedes effective partnerships between family caregivers and providers of patient care. The prevailing emphasis on supporting individual autonomy and safeguarding the privacy of personal health information limits family caregivers’ access to information that is appropriate and beneficial to their ability to effectively coordinate care and manage treatments. This issue has become particularly important because of the increased reliance on Electronic Health Records (EHRs). There are numerous issues that have yet to be resolved related to EHRs including, availability and access to EHR systems for lower SES caregivers, lack of technology skills, usability difficulties; and issues related to privacy and information sharing. Health care providers are not compensated for time spent educating family caregivers about patients’ medical conditions and treatments, nor are they trained to have those conversations. Although clinical assessments used to formulate treatment plans commonly include questions for patients about the availability of help, caregivers are not asked about their ability to provide care or their relevant knowledge, other sources of potential support, or contextual issues such as the nature of the home environment. Additionally, receipt of training in performing caregiving tasks is inconsistent at best. The availability and adequacy of family caregiving is simply assumed. The recent National Academies of Sciences, Engineering, and Medicine report (1) on family caregiving calls for transformation in the policies and practices affecting the role of families in the support and care of older adults, stating that today’s emphasis on person-centered care needs to evolve into a focus on person- and family-centered care, where family-centered care is defined as care that is centered in collaborative partnerships among patients, their defined
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family, and providers of care (13). We focus here on those policy recommendations most relevant to clinicians who interact with and care for family caregivers and their patients. Caregiver assessment. Caregivers’ circumstances vary widely and in ways that affect their availability, capacity, and willingness to assume critical responsibilities. Evidence from randomized clinical trials indicates that most effective interventions begin with an assessment of caregivers’ risks, needs, strengths, and preferences. Yet most health and Long Term Services and Supports (LTSS) providers do not assess the health, skills, employment status, or willingness of family caregivers to serve in the caregiving role, and provide them little, if any, training to carry out the complicated medical procedures, personal care, and care coordination tasks they are expected to provide. Indeed, the lack of systematic assessment of family participation in health and LTSS not only affects the experience of family caregivers and care recipients, it also precludes knowledge of how their involvement influences the quality of clinical care and social services. Further it undermines credible accounting of the value family caregivers bring to the health care delivery system and to society. Optimizing the role of family caregivers will minimally require systematic attention to the identification, assessment, and support of family caregivers throughout the care delivery process. How might this be achieved? First, caregivers need to be identified in both the care recipient’s and the caregiver’s medical record. This acknowledges their role as part of a care team and sensitizes providers to the importance of engaging the caregiver when making patient treatment plans. Second, caregivers should be screened to identify those at risk for adverse health outcomes, particularly depression and anxiety, and whose circumstances may place the person they care for in harm’s way. Achieving this goal will require new tools that assess caregivers’ strengths, limits, needs, and risks in relation to the range of tasks they are expected to perform.
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Assessments should minimally include caregivers’ health and functional status, their level of stress and well-being, their ability to perform required tasks, and the types of training and supports they might need to enact their role. Other issues that have particular relevance for the psychiatric community include family dynamics and potential problems with physical or psychological abuse, substance abuse or unsafe conditions. Assessments should be on-going and occur during all key provider patient/caregiver encounters, including wellness exams, physician visits, admission and discharge from hospitals and emergency rooms, and chronic care coordination and care transition programs. Key initial steps to implementing this recommendation will require identification and refinement of caregiver assessment tools appropriate to the care delivery context of the care recipient, identification and training of assessors, and evaluation of provider work flow to determine where and when assessments take place. The health, functional ability, and care needs of the patient as well as available resources should be key factors in determining the fit between patient needs and caregiver capacity, which in turn should inform the training and support needs of the caregiver. Supporting caregivers. Guidance on how best to support caregivers can be gleaned from a large body of intervention research aimed at improving caregiver and patient outcomes. Education and skills training improve caregiver confidence and the ability to manage daily care challenges. Training strategies that involve active participation of the caregiver are particularly effective in achieving positive outcomes. Counseling, self-care, relaxation training, and respite programs can improve both caregiver and patient quality of life. There is also an emerging body of evidence which indicates that technology-based interventions can be an effective and efficient alternative for delivering programs to enhance caregiver knowledge, skills and support.
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However, research in this area is still in its’ infancy and more robust studies are needed to address issues related to cost and reimbursement, technology access and how to best integrate technology with more standard clinical practices (14). Despite the demonstrated effectiveness of a wide range of caregiver services and supports, few of these intervention strategies have moved from research settings to everyday health and social service programs. Key questions that need to be addressed in pursuing widespread implementation of proven interventions include who should deliver these support strategies, where and when should they be delivered, how can they be integrated into the existing workflow of provider organizations, and who should pay for their delivery and evaluation? Mechanisms to maintain and evaluate these programs also need to be identified. The National Family Caregiver Support Program (15) of the Administration for Community Living is one example of a federal program that incorporates elements of evidence-based caregiver interventions into broad based service programs for caregivers. These relatively modest efforts should be scaled up and expanded. At the same time, we should continue to support efficacy trials aimed at developing and refining support strategies for caregivers, especially for caregivers from minority groups. With few exceptions, there are no financial incentives for providers to identify, assess, or support family caregivers or penalties for not doing so. For example, the Caregivers and Veterans Omnibus Health Services Act of 2010 (16) established a mechanism for reimbursement/workload credit for services provided to family caregivers, but the focus is primarily on caregivers of younger veterans (1). The Centers for Medicare and Medicaid Services should be charged with developing, testing, and implementing provider payment reforms that motivate providers to engage family and support caregivers. Payment reforms
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should include clearly articulated performance standards that hold providers accountable for caregiver engagement, training, and support by explicitly including caregiver outcomes in quality measures. Outcome measures should include caregiver satisfaction with provider encounters, adequacy of training and instructions provided, caregivers’ confidence and efficacy in performing required tasks, and the adequacy of support services provided. Enhancing competencies of health care and LTSS providers. Providers should see family caregivers not just as a resource in the treatment or support of a person, but rather as a partner who may need information, training, care, and support. Achieving and acting on that perspective requires that providers have the skills to recognize a caregiver’s presence, assess whether and how the caregiver can best participate in overall care, engage and share information with the caregiver, recognize the caregiver’s own health care and support needs, and refer the caregiver to needed services and supports. A wide range of clinicians are likely to interact with family caregivers. Professional organizations in social work and nursing have led the way in taking steps to establish standards for person- and family-centered care that includes the caregiver. Similar efforts are needed across other health care and social service professions, including psychiatry and psychology. Federal support is needed from the U.S. Department of Health and Human Services (HHS) for the development and enforcement of competencies for identifying, assessing, and supporting family caregivers by health care and human service professionals. Achieving this goal requires that specific competencies are identified by provider type, including competencies related to working with diverse family caregivers. These competencies should in turn shape the development of educational curricula and training programs designed to teach them. Professional societies and accrediting bodies should develop educational curricula and support their systematic evaluation
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and implementation, and should convene and collaborate with state agencies and professional organizations to incorporate competencies into standards for licensure and certification. Conclusion and Future Directions The availability of family caregivers in the future is threatened by the higher rates of childlessness among baby boomers, smaller and more geographically dispersed families, the increase in non-traditional family structures, and increasing participation of women in the labor force (2). At the same time, advances in medicine that save and extend lives and the changes in health care practices increase the duration, complexity, and technical difficulty of care required by individuals with serious illness and disability. Family caregivers will continue to play a vital role in existing health care and LTSS systems. However, their willingness to provide care and their effectiveness in doing so will depend on fundamental changes in the extent to which we formally recognize them as key contributors to the health of their relatives, integrate them into the formal provider systems, and support them to do their job. The stakes are high, particularly for high need, high cost patients whose quality of life critically depends on the availability of a family caregiver, and for society as a whole responsible for providing high quality and costeffective care. Further, despite the vast scientific literature related to caregiving, more research is urgently needed to develop the tools and protocols to efficiently assess caregivers, and identify ways in which they can be integrated into existing clinical practices. We also need research to identify how to best implement, maintain, and evaluate evidence-based caregiver support programs within existing clinical and community settings.
REFERENCES
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1. Schulz R, Eden J (eds): Families Caring for an Aging America. Washington, DC, National Academies of Sciences, Engineering and Medicine, The National Academies Press, 2016
2. Schulz R, Tompkins CA: Informal caregivers in the United States: Prevalence, caregiver characteristics, and ability to provide care, in National Research Council, The Role of Human Factors in Home Health Care: Workshop Summary. Washington, DC, The National Academies Press, 2010, pp. 117-143
3. National Health and Aging Trends Study. Produced and distributed by www.nhats.org with funding from the National Institute on Aging (grant number NIA U01AG32947)
4. National Study of Caregiving. Produced and distributed by www.nhats.org with funding from the U.S. Department of Health and Human Services’ Office of the Assistant Secretary for Planning and Evaluation in cooperation with the National Institute on Aging (grant number NIA U01AG32947)
5. Hayes SL, Salzberg CA, McCarthy D, et al: High-need, high-cost patients: Who are they and how do they use health care—a population-based comparison of demographics, health care use, and expenditures. New York, NY, The Commonwealth Fund, August 2016
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6. Kelley AS, McGarry K, Gorges R, et al: The burden of health care costs for patients with dementia in the last 5 years of life. Ann Intern Med 2015; 163:729-736
7. Hurd MD, Martorell P, Langa KM: Monetary costs of dementia in the United States. New Engl J Med 2013; 369:489-490
8. Riley GF, Lubitz JD: Long-term trends in Medicare payments in the last year of life. Health Serv Res 2010; 45:565-576
9. Hogan C, Lunney J, Gabel J, et al: Medicare beneficiaries' costs of care in the last year of life. Health Aff 2001; 20:188-195
10. Schulz R, Sherwood, P: Physical and mental health effects of family caregiving. Am J Nurs 2008; 108:23-27
11. Schulz R, O’Brien AT, Bookwala J, et al: Psychiatric and physical morbidity effects of Alzheimer’s disease caregiving: Prevalence, correlates, and causes. Gerontologist 1995; 35:771-791
12. Wolff JL, Spillman BC, Freedman VA, et al: A National profile of family and unpaid caregivers who assist older adults with health care activities. JAMA Intern Med 2016; 176:372-379
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13. National Quality Forum. Priority Setting for Healthcare Performance Measurement: Addressing Performance Measure Gaps in Person-Center Care and Outcomes. August 15, 2014. Available at: https://www.qualityforum.org/Publications/2014/08/Priority_Setting_for_Healthcare_Per formance_Measurement__Addressing_Performance_Measure_Gaps_in_PersonCentered_Care_and_Outcomes.aspx. Accessed June 28, 2017
14. Czaja SJ, Lee CC, Schulz R: Quality of life technologies in supporting family caregivers, in Quality of Life Technology Handbook. Edited by Schulz R. Boca Raton, FL: CRC Press/Taylor and Francis Group, 2013, pp. 245-260
15. Administration for Community Living: National Family Caregiver Support Program (NFCSP). Available at: https://www.acl.gov/programs/support-caregivers/nationalfamily-caregiver-support-program. Accessed June 20. 2017
16. Congress.gov. Public Law 111-1563. May 5, 2010. Caregivers and Veterans Omnibus Health Services Act of 2010. Available at: https://www.congress.gov/111/plaws/publ163/PLAW-111publ163.pdf. Accessed June 20, 2017
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Fig. 1. Three Overlapping Patient Populations and Proportion with at least 0ne Unpaid Caregiver (CG)*
END OF LIFE
CHRONIC CONDS 6.7 million 78 % with CG
433,000 83 % with CG
440,000 75 % with CG
290,000 97% with CG
190,000 89 % with CG
1.35 million 89 % with CG
DEMENTIA 1.7 million 83 % with CG
CHRONIC CONDS = At least 3 chronic conditions and 1ADL/IADL limitation; Dementia excluded as chronic condition
END OF LIFE = Died within one year of baseline assessment DEMENTIA = Diagnosis of probable Dementia NONE OF THE ABOVE, 24.1 million, 67 % with CG
*Source: National Health and Aging Trends Study (NHATS, 2011,, N= 7609); non-institutionalized US older adults aged 65 and over, 35.3 million, weighted population estimates.
Fig. 1. Three Overlapping Patient Populations and Proportion with at least One Unpaid Caregiver (CG)*
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