Viewpoint
Policy and advocacy for informal caregivers: How state policy influenced a community initiative Panagis Galiatsatosa,*, Amelia Gurleya, and W. Daniel Haleb a
Medicine for the Greater Good, Johns Hopkins Bayview Medical Center, 4940 Eastern Avenue, 3rd Floor, Center Tower, Mason F Lord Building, Baltimore, MD 21224, USA. b
Division of Geriatrics, Johns Hopkins School of Medicine, Baltimore, MD, USA.
*Corresponding author. E-mail: [email protected]
Abstract
With a growing proportion of elderly in the global population, the role of ‘informal caregivers’ gains importance. Informal caregivers are unpaid family members or friends who provide assistance to home-dwelling adults with health-related needs or limitations. Internationally, informal caregivers provide important medical support to those with a variety of diseases. While informal caregivers will remain vital to the growing aging population’s pursuit of healthy aging, they often suffer from ‘caregiver burnout,’ a state of physical, emotional, and mental exhaustion caused by their caregiving work. Policy and legislation are needed to diminish the burden on caregivers and to help assure that resources are allocated for these caregivers. We describe an initiative aimed at providing appropriate social support for caregivers by partnering among local organizations, hospitals, and health authorities. Journal of Public Health Policy (2017). doi:10.1057/s41271-017-0084-x
Keywords: caregivers; community engagement; health policy; public health
Introduction The world’s population will soon include a higher proportion of elderly individuals than ever before. While today individuals aged 65 and older represent more than 7 per cent of the world’s population,1 the World Health Organization predicts that by 2050, the number of elderly individuals will outnumber, for the first time, the number of children under five.2 In the United States (US), the US Census Bureau predicts the elderly will outnumber children by 2020.1
2017 Macmillan Publishers Ltd. 0197-5897 Journal of Public Health Policy
www.palgrave.com/journals
Galiatsatos et al
The growing elderly population brings concerns about the quality of aging, particularly with respect to health-care. The prevalence of many non-communicable diseases — cardiac and oncologic ones, in particular — increase with age.3 Therefore, future health policies and legislation everywhere must make healthy aging a priority. One key component of healthy aging will require better attention to informal caregivers. ‘Informal caregivers’ are unpaid family members or friends who provide assistance to home-dwelling adults with healthrelated needs or limitations.4,5 Around the world, informal caregivers (shortened to ‘caregivers’ hereinafter) have provided a large share of medical support for patients with AIDS,6 neuromuscular diseases,7 and dementia.8 Their contributions have helped produce positive health outcomes for these patients. In certain areas of Africa, informal caregiving in response to the HIV/AIDS crisis has been associated with declines in HIV rates.6,9 HIV/AIDS informal caregivers, however, suffer from high rates of ‘caregiver burnout’ (defined in Table 1). They struggle for adequate and culturally attuned social support to help relieve these pressures.9 In Japan, informal caregivers who attend to the needs of their elderly loved ones with dementia also face high rates of ‘caregiver burden’ (defined in Table 1). One report identified symptoms of burnout in more than half of caregivers.10 In the United States, a survey shows that informal caregivers have been immensely cost-effective; their uncompensated services amounted to more than $600 billion annually.5 Yet caregiving burden and burnout have high prevalence rates in the United States, too.11 Therefore, in all countries, the health of informal caregivers must be a priority. Otherwise these caregiver health issues may impede or negate any positive impact they might have on healthy aging.
Called to Care: A Community Initiative for Easing Caregiver Burden In the US state of Maryland, the population over the age of 60 is expected to increase 40 per cent — from 1.2 to 1.7 million people — between 2015 and 2030.12 In anticipation, to ensure priority for healthy aging, the state has proposed five specific goals in its State Plan on Aging.12 Two may impact informal caregivers:
2017 Macmillan Publishers Ltd. 0197-5897
Journal of Public Health Policy
Policy and advocacy for informal caregivers
Table 1: A list of definitions regarding caregivers and caregiving Term
Definition
Informal caregiver Caregiver burden Caregiver burnout Caregiver respite
Unpaid family members or friends who provide assistance to home-dwelling adults with health-related needs or limitations4,5 Stress perceived by caregivers due to caregiving13 A state of physical, emotional, and mental exhaustion and distress due to caregiving14 A temporary rest from caregiving for the caregiver, while the patient continues to receive appropriate care in a safe environment13
• The state will ‘‘support…older adults…and their loved ones to easily access and make informed choices about services that support them’’; • The state will ‘‘create opportunities for older adults and their families to lead active and healthy lives.’’12 Given Maryland’s pledges to the elderly population and for healthy aging, we believe these specific policies should incorporate appropriate advocacy for the needs of informal caregivers. Thus, we launched an initiative, Called to Care, in Maryland’s largest city (Baltimore City). We aimed to improve the culture of caregiving, social support around caregiving, and to provide a model for improving effectiveness of implementation of Maryland’s policies on healthy aging. We began operation of Called to Care in 2015. In the first year, we undertook three key steps with and for informal caregivers. 1. We established support in local communities, promoting local partnerships between an academic hospital (where our initiative was based) and community institutions. We did so by communicating with leaders within the communities and the hospital, then by bringing them together in several meetings and lectures where we highlighted the epidemiology of caregivers locally and their impact on medical outcomes. With support of these key stakeholders, we pursued partnerships with faith-based organizations, public libraries, medical clinics, health-care provider training programs (including nursing schools, physician residency programs), the local health department, and local political leaders. Having formed these partnerships, we launched an educational campaign that focused on caregiving, offering insight through personal stories about what informal caregivers accomplish daily, such as medication
2017 Macmillan Publishers Ltd. 0197-5897 Journal of Public Health Policy
Galiatsatos et al
management for the patient. We illustrated how these activities result in specific positive health outcomes, including preventing hospital admissions. We concentrated our message on caregivers’ own wellbeing and health, emphasizing that the contributions caregivers make should not harm their health. Upon completion of the educational awareness campaign, we had assembled a list of churches, clinics, and organizations through which we could recruit caregivers and/or resources for caregivers in our program. 2. We organized caregiver support groups to learn more attitudes, beliefs, and concerns about caregiving. These support groups met in local community churches, synagogues, medical clinics or hospitals, or other similar venues. When working with faith-based organizations, we often requested spiritual leaders to be a part of the conversations, to assure that participants could discuss their caregiving efforts in accord with their community, faith, and customs. In clinical settings (hospitals or clinics), with the aid of the staff, we advertised caregiving sessions. Some sessions attracted a handful of community members, others as many as 20 participants. Community members highlighted challenges that they have faced since becoming caregivers. They shared concerns about their own health. We encouraged informal caregivers to tell what resources would make caregiving more enjoyable and better organized. Our staff documented all responses during the sessions. The two items most often discussed were caregiver ‘respite’ (definition provided in Table 1) and how to assure a healthy diet (for both the patient and caregiver). 3. We worked on attracting and matching appropriate resources to assist caregivers. We invited personnel from the partnership organizations to attend support group meetings where they told what they could offer, including meal services, assistance with management of medications, affordable housing support (such as access to government housing units), or ways to create a safer home environment (for example chair lifts). Towards the end of the first year, caregivers had requested resources and partner organizations came to meetings, responding with specific resource offers. We also promoted wellness activities at meetings (such as meditation, physical activities, or music therapy). We encouraged caregivers to discuss how they pursued respites from caregiving (a type of peer-to-peer education). We asked caregivers attending the support groups to rate their
2017 Macmillan Publishers Ltd. 0197-5897
Journal of Public Health Policy
Policy and advocacy for informal caregivers
experiences with the offered resources, as well as to suggest additional resources for discussion at future meetings. Informal caregivers expressed great enthusiasm about their experience with the first three steps, as did the partner community organizations. We are now undertaking additional steps to assure that our strategy will be sustainable and to demonstrate key outcomes, such as reducing caregiver burden. Even before we have the results of a formal evaluation, we have observed changes that flowed from the first year of Called to Care. We believe that the success of the initiative to date has been rooted in community partnerships. The partner organizations enhanced their resources for caregivers and for those whom they tended. They began to offer respite for informal caregivers, trying to make caregiving more organized while minimizing caregiver burden and burnout.
Closing Thoughts Moving forward, policies and advocacy to enhance informal caregiving and caregivers should be a priority globally. We designed our Called to Care project to help implement Maryland’s legislative commitment to healthy aging. We believe other communities can replicate Called to Care. Such initiatives, whether directly or indirectly aiming to prevent or treat caregiver burden, can be facilitated by strong community partnerships. Such partnerships can plant vital seeds for future collaboration between health-care organizations and communities, including with researchers. The results can be used to improve policy and legislation to support informal caregivers and enhance health of aging populations around the world.
About the Authors Panagis Galiatsatos, MD is a co-director of Medicine for the Greater Good at Johns Hopkins Bayview Medical Center, Baltimore, Maryland, USA. Amelia Gurley, BA is an intern in Medicine for the Greater Good at Johns Hopkins Bayview Medical Center, Baltimore, Maryland, USA.
2017 Macmillan Publishers Ltd. 0197-5897 Journal of Public Health Policy
Galiatsatos et al
W. Daniel Hale, PhD is an assistant professor in the Division of Geriatrics, Johns Hopkins School of Medicine, Baltimore, Maryland, USA.
References 1. He, W., Goodkind, D. and Kowal, P. (2016) An aging world: 2015 International Population Reports. U.S. Census Bureau, https://www.census.gov/content/dam/Census/library/ publications/2016/demo/p95-16-1.pdf, accessed 21 April 2017. 2. World Health Organization. (2017) Fact sheet no 404. Aging and health, http://www.who.int/ mediacentre/factsheets/fs404/en/, accessed 28 April 2017. 3. Hunter, D.J. and Reddy, K.S. (2013) Noncommunicable diseases. New England Journal of Medicine 369: 1336–1343. 4. Knickman, J.R. and Snell, E.K. (2012) The 2030 problem. Health Services Research 37(4): 849–884. 5. Chari, A.V., Engberg, J., Ray, K.N. and Mehrotra, A. (2015) The opportunity costs of informal elder-care in the United States: new estimates from the American time use survey. Health Services Research 50: 871–872. 6. Akintola, O., Hlengwa, W.M. and Dageid, W. (2013) Perceived stress and burnout among volunteer caregivers working in AIDS care in South Africa. Journal of Advanced Nursing 69(12): 2738–2749. 7. Mackay, J., Downs, J., Wong, K., Heyworth, J., Epstein, A. and Leonard, H. (2017) Autonomic breathing abnormalities in Rett syndrome: caregiver perspectives in an international database study. Journal of Neurodevelopmental Disorders 9: 15. 8. Janssen, E.P., de Vugt, M., Kohler, S., Wolfs, C., Kerpershoek, L., Handels, R.L. et al (2017) Caregiver profiles in dementia related to quality of life, depression and perseverance time in the European Actifcare study: the importance of social health. Aging and Mental Health 21(1): 49–57. 9. Ranjbar, V. (2014) The HIV/AIDS caregiver identify as a double-edged sword: a disclosure analysis on HIV/AIDS caregiving in South Africa. African Journal of AIDS Research 13(3): 261–269. 10. Kimura, H., Tamoto, T., Kanzaki, N. and Shinchi, K. (2011) Burnout and characteristics of mental health of caregivers of elderly dementia patients. Journal of Rural Medicine 6(2): 47–53. 11. Vitaliano, P.P., Zhang, J. and Scanlan, J.M. (2003) Is caregiving hazardous to one’s physical health? A meta-analysis. Psychological Bulletin 129: 946. 12. Hogan, L., Rutherford, B.K. and Kramer, R.E. (2016) 2017–2020 state plan on aging. Maryland Department of Aging, http://aging.maryland.gov/Documents/MDStatePlan2017_ 2020Dated092216.pdf, accessed 1 May 2017. 13. Bevans, M.F. and Sternberg, E.M. (2012) Caregiving burden, stress, and health effects among family caregivers of adult cancer patients. JAMA 307: 398–403. 14. Yu, H., Wang, X., He, R., Liang, R. and Zhou, L. (2015) Measuring the caregiver burden of caring for community-residing people with Alzheimer’s disease. PLoS ONE 10: e0132168.
2017 Macmillan Publishers Ltd. 0197-5897
Journal of Public Health Policy
Policy and advocacy for informal caregivers: How state policy influenced a community initiative Panagis Galiatsatosa,*, Amelia Gurleya, and W. Daniel Haleb a
Medicine for the Greater Good, Johns Hopkins Bayview Medical Center, 4940 Eastern Avenue, 3rd Floor, Center Tower, Mason F Lord Building, Baltimore, MD 21224, USA. b
Division of Geriatrics, Johns Hopkins School of Medicine, Baltimore, MD, USA.
*Corresponding author. E-mail: [email protected]
Abstract
With a growing proportion of elderly in the global population, the role of ‘informal caregivers’ gains importance. Informal caregivers are unpaid family members or friends who provide assistance to home-dwelling adults with health-related needs or limitations. Internationally, informal caregivers provide important medical support to those with a variety of diseases. While informal caregivers will remain vital to the growing aging population’s pursuit of healthy aging, they often suffer from ‘caregiver burnout,’ a state of physical, emotional, and mental exhaustion caused by their caregiving work. Policy and legislation are needed to diminish the burden on caregivers and to help assure that resources are allocated for these caregivers. We describe an initiative aimed at providing appropriate social support for caregivers by partnering among local organizations, hospitals, and health authorities. Journal of Public Health Policy (2017). doi:10.1057/s41271-017-0084-x
Keywords: caregivers; community engagement; health policy; public health
Introduction The world’s population will soon include a higher proportion of elderly individuals than ever before. While today individuals aged 65 and older represent more than 7 per cent of the world’s population,1 the World Health Organization predicts that by 2050, the number of elderly individuals will outnumber, for the first time, the number of children under five.2 In the United States (US), the US Census Bureau predicts the elderly will outnumber children by 2020.1
2017 Macmillan Publishers Ltd. 0197-5897 Journal of Public Health Policy
www.palgrave.com/journals
Galiatsatos et al
The growing elderly population brings concerns about the quality of aging, particularly with respect to health-care. The prevalence of many non-communicable diseases — cardiac and oncologic ones, in particular — increase with age.3 Therefore, future health policies and legislation everywhere must make healthy aging a priority. One key component of healthy aging will require better attention to informal caregivers. ‘Informal caregivers’ are unpaid family members or friends who provide assistance to home-dwelling adults with healthrelated needs or limitations.4,5 Around the world, informal caregivers (shortened to ‘caregivers’ hereinafter) have provided a large share of medical support for patients with AIDS,6 neuromuscular diseases,7 and dementia.8 Their contributions have helped produce positive health outcomes for these patients. In certain areas of Africa, informal caregiving in response to the HIV/AIDS crisis has been associated with declines in HIV rates.6,9 HIV/AIDS informal caregivers, however, suffer from high rates of ‘caregiver burnout’ (defined in Table 1). They struggle for adequate and culturally attuned social support to help relieve these pressures.9 In Japan, informal caregivers who attend to the needs of their elderly loved ones with dementia also face high rates of ‘caregiver burden’ (defined in Table 1). One report identified symptoms of burnout in more than half of caregivers.10 In the United States, a survey shows that informal caregivers have been immensely cost-effective; their uncompensated services amounted to more than $600 billion annually.5 Yet caregiving burden and burnout have high prevalence rates in the United States, too.11 Therefore, in all countries, the health of informal caregivers must be a priority. Otherwise these caregiver health issues may impede or negate any positive impact they might have on healthy aging.
Called to Care: A Community Initiative for Easing Caregiver Burden In the US state of Maryland, the population over the age of 60 is expected to increase 40 per cent — from 1.2 to 1.7 million people — between 2015 and 2030.12 In anticipation, to ensure priority for healthy aging, the state has proposed five specific goals in its State Plan on Aging.12 Two may impact informal caregivers:
2017 Macmillan Publishers Ltd. 0197-5897
Journal of Public Health Policy
Policy and advocacy for informal caregivers
Table 1: A list of definitions regarding caregivers and caregiving Term
Definition
Informal caregiver Caregiver burden Caregiver burnout Caregiver respite
Unpaid family members or friends who provide assistance to home-dwelling adults with health-related needs or limitations4,5 Stress perceived by caregivers due to caregiving13 A state of physical, emotional, and mental exhaustion and distress due to caregiving14 A temporary rest from caregiving for the caregiver, while the patient continues to receive appropriate care in a safe environment13
• The state will ‘‘support…older adults…and their loved ones to easily access and make informed choices about services that support them’’; • The state will ‘‘create opportunities for older adults and their families to lead active and healthy lives.’’12 Given Maryland’s pledges to the elderly population and for healthy aging, we believe these specific policies should incorporate appropriate advocacy for the needs of informal caregivers. Thus, we launched an initiative, Called to Care, in Maryland’s largest city (Baltimore City). We aimed to improve the culture of caregiving, social support around caregiving, and to provide a model for improving effectiveness of implementation of Maryland’s policies on healthy aging. We began operation of Called to Care in 2015. In the first year, we undertook three key steps with and for informal caregivers. 1. We established support in local communities, promoting local partnerships between an academic hospital (where our initiative was based) and community institutions. We did so by communicating with leaders within the communities and the hospital, then by bringing them together in several meetings and lectures where we highlighted the epidemiology of caregivers locally and their impact on medical outcomes. With support of these key stakeholders, we pursued partnerships with faith-based organizations, public libraries, medical clinics, health-care provider training programs (including nursing schools, physician residency programs), the local health department, and local political leaders. Having formed these partnerships, we launched an educational campaign that focused on caregiving, offering insight through personal stories about what informal caregivers accomplish daily, such as medication
2017 Macmillan Publishers Ltd. 0197-5897 Journal of Public Health Policy
Galiatsatos et al
management for the patient. We illustrated how these activities result in specific positive health outcomes, including preventing hospital admissions. We concentrated our message on caregivers’ own wellbeing and health, emphasizing that the contributions caregivers make should not harm their health. Upon completion of the educational awareness campaign, we had assembled a list of churches, clinics, and organizations through which we could recruit caregivers and/or resources for caregivers in our program. 2. We organized caregiver support groups to learn more attitudes, beliefs, and concerns about caregiving. These support groups met in local community churches, synagogues, medical clinics or hospitals, or other similar venues. When working with faith-based organizations, we often requested spiritual leaders to be a part of the conversations, to assure that participants could discuss their caregiving efforts in accord with their community, faith, and customs. In clinical settings (hospitals or clinics), with the aid of the staff, we advertised caregiving sessions. Some sessions attracted a handful of community members, others as many as 20 participants. Community members highlighted challenges that they have faced since becoming caregivers. They shared concerns about their own health. We encouraged informal caregivers to tell what resources would make caregiving more enjoyable and better organized. Our staff documented all responses during the sessions. The two items most often discussed were caregiver ‘respite’ (definition provided in Table 1) and how to assure a healthy diet (for both the patient and caregiver). 3. We worked on attracting and matching appropriate resources to assist caregivers. We invited personnel from the partnership organizations to attend support group meetings where they told what they could offer, including meal services, assistance with management of medications, affordable housing support (such as access to government housing units), or ways to create a safer home environment (for example chair lifts). Towards the end of the first year, caregivers had requested resources and partner organizations came to meetings, responding with specific resource offers. We also promoted wellness activities at meetings (such as meditation, physical activities, or music therapy). We encouraged caregivers to discuss how they pursued respites from caregiving (a type of peer-to-peer education). We asked caregivers attending the support groups to rate their
2017 Macmillan Publishers Ltd. 0197-5897
Journal of Public Health Policy
Policy and advocacy for informal caregivers
experiences with the offered resources, as well as to suggest additional resources for discussion at future meetings. Informal caregivers expressed great enthusiasm about their experience with the first three steps, as did the partner community organizations. We are now undertaking additional steps to assure that our strategy will be sustainable and to demonstrate key outcomes, such as reducing caregiver burden. Even before we have the results of a formal evaluation, we have observed changes that flowed from the first year of Called to Care. We believe that the success of the initiative to date has been rooted in community partnerships. The partner organizations enhanced their resources for caregivers and for those whom they tended. They began to offer respite for informal caregivers, trying to make caregiving more organized while minimizing caregiver burden and burnout.
Closing Thoughts Moving forward, policies and advocacy to enhance informal caregiving and caregivers should be a priority globally. We designed our Called to Care project to help implement Maryland’s legislative commitment to healthy aging. We believe other communities can replicate Called to Care. Such initiatives, whether directly or indirectly aiming to prevent or treat caregiver burden, can be facilitated by strong community partnerships. Such partnerships can plant vital seeds for future collaboration between health-care organizations and communities, including with researchers. The results can be used to improve policy and legislation to support informal caregivers and enhance health of aging populations around the world.
About the Authors Panagis Galiatsatos, MD is a co-director of Medicine for the Greater Good at Johns Hopkins Bayview Medical Center, Baltimore, Maryland, USA. Amelia Gurley, BA is an intern in Medicine for the Greater Good at Johns Hopkins Bayview Medical Center, Baltimore, Maryland, USA.
2017 Macmillan Publishers Ltd. 0197-5897 Journal of Public Health Policy
Galiatsatos et al
W. Daniel Hale, PhD is an assistant professor in the Division of Geriatrics, Johns Hopkins School of Medicine, Baltimore, Maryland, USA.
References 1. He, W., Goodkind, D. and Kowal, P. (2016) An aging world: 2015 International Population Reports. U.S. Census Bureau, https://www.census.gov/content/dam/Census/library/ publications/2016/demo/p95-16-1.pdf, accessed 21 April 2017. 2. World Health Organization. (2017) Fact sheet no 404. Aging and health, http://www.who.int/ mediacentre/factsheets/fs404/en/, accessed 28 April 2017. 3. Hunter, D.J. and Reddy, K.S. (2013) Noncommunicable diseases. New England Journal of Medicine 369: 1336–1343. 4. Knickman, J.R. and Snell, E.K. (2012) The 2030 problem. Health Services Research 37(4): 849–884. 5. Chari, A.V., Engberg, J., Ray, K.N. and Mehrotra, A. (2015) The opportunity costs of informal elder-care in the United States: new estimates from the American time use survey. Health Services Research 50: 871–872. 6. Akintola, O., Hlengwa, W.M. and Dageid, W. (2013) Perceived stress and burnout among volunteer caregivers working in AIDS care in South Africa. Journal of Advanced Nursing 69(12): 2738–2749. 7. Mackay, J., Downs, J., Wong, K., Heyworth, J., Epstein, A. and Leonard, H. (2017) Autonomic breathing abnormalities in Rett syndrome: caregiver perspectives in an international database study. Journal of Neurodevelopmental Disorders 9: 15. 8. Janssen, E.P., de Vugt, M., Kohler, S., Wolfs, C., Kerpershoek, L., Handels, R.L. et al (2017) Caregiver profiles in dementia related to quality of life, depression and perseverance time in the European Actifcare study: the importance of social health. Aging and Mental Health 21(1): 49–57. 9. Ranjbar, V. (2014) The HIV/AIDS caregiver identify as a double-edged sword: a disclosure analysis on HIV/AIDS caregiving in South Africa. African Journal of AIDS Research 13(3): 261–269. 10. Kimura, H., Tamoto, T., Kanzaki, N. and Shinchi, K. (2011) Burnout and characteristics of mental health of caregivers of elderly dementia patients. Journal of Rural Medicine 6(2): 47–53. 11. Vitaliano, P.P., Zhang, J. and Scanlan, J.M. (2003) Is caregiving hazardous to one’s physical health? A meta-analysis. Psychological Bulletin 129: 946. 12. Hogan, L., Rutherford, B.K. and Kramer, R.E. (2016) 2017–2020 state plan on aging. Maryland Department of Aging, http://aging.maryland.gov/Documents/MDStatePlan2017_ 2020Dated092216.pdf, accessed 1 May 2017. 13. Bevans, M.F. and Sternberg, E.M. (2012) Caregiving burden, stress, and health effects among family caregivers of adult cancer patients. JAMA 307: 398–403. 14. Yu, H., Wang, X., He, R., Liang, R. and Zhou, L. (2015) Measuring the caregiver burden of caring for community-residing people with Alzheimer’s disease. PLoS ONE 10: e0132168.
2017 Macmillan Publishers Ltd. 0197-5897
Journal of Public Health Policy
