Resolution on Family Caregivers

Whereas 65.7 million Americans, in 31 percent of all U.S. households, provide family caregiving during the course of any given year for ill or disabled family members across the lifespan, including 48.9 million who have cared for only adult recipients, 3.9 million who have cared for only child recipients, and 12.9 million who have cared for both child and adult recipients (National Alliance for Caregiving, 2009);

Whereas 16.8 million family caregivers have provided care to a child under the age of 18 with special needs (National Alliance of Caregiving, 2009), 9.9 million family caregivers have provided care for a person with Alzheimer’s disease or other dementia (Alzheimer’s Association, 2009), 8 million U.S. families include at least one parent that has a disability (Parents with Disabilities Online, 2010), 2.4 million family caregivers are primary caregivers for their grandchildren (U.S. Census Bureau, 2006), and 1.3 to 1.4 million children and teens serve as caregivers for sick siblings, parents or aging relatives (National Alliance for Caregiving, 2005);

Whereas the number of family caregivers is expected to increase due to the aging of the population, and an escalating rate of chronic, debilitating health conditions (Crimmins, 2010) and fully two-thirds of the U.S. public expects to be caregivers in the future (Opinion Research Corporation, 2005);

Whereas the majority of family caregivers are women (National Alliance for Caregiving, 2009) including over two-thirds of grandparent caregivers (Butts, 2005), and there is evidence that women take on more caregiving tasks, report more care recipient problems, and experience more distress due to caregiving than male caregivers (Pinquart & Sorensen, 2006a; Yee & Schulz, 2000);

Whereas the percentage of males who are primary caregivers has increased 50% from 1984 to 1994 (Spillman & Pezzin, 2000);

Whereas many spousal caregivers of individuals aged 65 and older are older themselves – most spouses who provide care to their disabled spouse are aged 65 and older, with 44% of spouse caregivers in their 70s and about one quarter in their 80s (Johnson & Weimer. 2006);

Whereas almost half -- 46 percent -- of lesbian, gay, bisexual and transgendered elders provide care to families of origin or families of choice (National Gay and Lesbian Task Force Policy Institute, 2005);

Whereas children and adolescents who serve as caregivers are at risk for less than optimal developmental, social, emotional, and/or behavioral outcomes, specialized services targeting this population are needed (National Alliance for Caregiving, 2005);

Whereas family caregivers are essential in providing care and facilitating community re-integration for service members and Veterans, many of whom are unprepared to cope with chronic illnesses exacerbated by age, and/or polytraumas such as brain injury, chronic pain, amputations or post-traumatic stress disorder (PTSD), and other mental health disorders that have been reported by a majority of active, reserve and retired service members of Operation Iraqi Freedom/Operation Enduring Freedom (President’s Commission on Care for America’s Returning Wounded Warriors, 2007);

Whereas family members of those with severe mental illness may need to assume supportive caregiving functions at times, especially during periods of acute exacerbation of illness, because of the scarcity of community-based housing alternatives and mental health services (Kaufman, et al, 2010; Lefley, 2009);

Whereas end-of-life caregiving presents a number of particular challenges, including the necessity of making life and death decisions about matters such as whether to utilize life-sustaining treatments and hospice care, intense care demands, and witnessing pain and suffering in loved ones (Stajduhar et al., 2010);

Whereas 1 in 10 working-age adults between 19 and 64 years of age are caregivers for a sick or disabled family member, and these working-age family caregivers are more likely to miss days of work, lack health insurance coverage, and live in households with incomes that are less than twice the federal poverty level, compared to non-caregivers (The Commonwealth Fund, 2005);

Whereas the nature and outcomes of family caregiving, and family structures and roles are different for various sub-groups, depending on such factors as age, gender, cultural and ethnic diversity and traditions, disability, sexual orientation, language, values and beliefs, socioeconomic status, degrees of acculturation and assimilation, interpersonal life experiences, religious affiliation, and geographic location (APA, 2010);

Whereas family caregivers may experience considerable burden, stress, and disruption of their own well-being, employment, educational and social pursuits (National Alliance on Caregiving, 2005), and are at increased risk for psychological and physical health problems, including premature mortality (Pinquart & Sorensen, 2003; Schulz & Beach, 1999), and increased mortality, coronary heart disease and stroke, particularly under conditions of high strain (Haley, et al., 2010; Lee, Colditz, Berkman, & Kawachi, 2003);

Whereas caregiving has significant consequences on the mental and behavioral health of family caregivers, including higher levels of stress and distress, depression, emotional problems, and cognitive problems than their non-caregiving counterparts (Brehaut et al., 2004; Douglas & Daly, 2003), and estimates suggest that between 40 to 70 percent of caregivers have clinically significant symptoms of depression, with approximately one-fourth to one-half of these caregivers meeting the diagnostic criteria for major depression (Zarit, 2006);

Whereas despite their important function in carrying out the in-home care plans prescribed by health care and social service systems, and a sense of fulfilling one’s family obligations and responsibilities, family caregivers frequently operate without adequate training, preparation, or ongoing support from these systems (Shewchuk & Elliott, 2000);

Whereas APA has historically supported efforts to enhance the health and well-being of family caregivers as exemplified in its 2010 Presidential Initiative on Caregivers and its product, The Family Caregiver Briefcase for Psychologists, the adoption of Blueprint for Change: Achieving Integrated Health Care for an Aging Population (2007) that highlights the role of family caregivers in integrated care models, and its membership in coalitions to encourage increased services and research to support the needs of family caregivers, including the National Alliance for Caregiving, Lifespan Respite Task Force, National Quality Caregiving Coalition, and the Consortium for Citizens with Disabilities;

Whereas psychologists have been major contributors to research on family caregiving beginning with its emergence as an important area of psychological research in the 1980s (Zarit, Reever & Bach-Peterson, 1980), and flourishing since in a variety of areas, cutting across age groups, health and disability conditions, and diverse sub-populations (APA, 2010);

Whereas family caregiving is an area of psychological research that has inspired both basic scholarly research (e.g., on the impact of different kinds of social support on caregiver well-being) and applied research (e.g., evaluating the efficacy of specific caregiver interventions) (APA, 2010);

Whereas psychological research has documented that caregiver interventions including cognitive behavioral therapy, psychoeducational interventions, psychotherapy, and culturally appropriate multicomponent interventions have proven effective in decreasing burden and depression while improving well-being, ability/knowledge, care recipient symptoms, and delaying nursing home placement (Gallagher-Thompson & Coon, 2007; Mittelman et al., 2006; Pinquart & Sorensen, 2006);

Whereas for over 20 years Psychologists have taken a leadership role in creating, implementing, evaluating and disseminating evidence-based interventions for reducing distress, and improving well-being of family caregivers and care recipients, and will increasingly be called upon to do so as the population ages and becomes increasingly diverse (APA, 2010);

Whereas APA has promulgated guidelines on practice with culturally diverse populations which hold relevance for psychological practice with caregivers including Guidelines on Multicultural Education, Training, Research, Practice, and Organizational Change for Psychologists (2002), Guidelines for Psychological Practice with Older Adults (2003), Guidelines for Psychological Practice with Girls and Women (2007), Guidelines for Psychological Practice with Lesbian, Gay, and Bisexual Clients (2011), Guidelines for Assessment of and Intervention with Persons with Disabilities (2011), and the Guidelines for the Evaluation of Dementia and Age-Related Cognitive Change (2011);

Whereas there is inadequate access to, availability of, and financing for culturally sensitive, evidence- based interventions and services for family caregivers;

Whereas there is an increased need for assessment and diagnosis of family caregivers' mental health problems and strengths in the context of their culture, family, and community;

Whereas there is a need for increased research-practice collaboration for the translation of evidence-based practices into community-based, culturally appropriate, family caregiver interventions and services;

Therefore be it resolved that the American Psychological Association:

Continues to serve as a leader in raising awareness about the critical role that family caregivers play in our society, and to inform and advocate for psychological research, interventions, services, and supports that promote optimal health, well-being, and quality of life for family caregivers and their care recipients.

Encourages psychologists to use the APA Family Caregivers Briefcase for Psychologists as a resource for considering how they might assist the diverse group of family caregivers and care recipients through individual and organizational practice, research, teaching and community service.

Encourages its Offices, Boards, Committees, Divisions and State and Territorial Psychological Associations to educate their colleagues about the availability and utility of the APA Family Caregivers Briefcase for Psychologists with particular attention to individuals across the lifespan with disabilities and/or chronic health conditions, including mental health and addictive disorders and HIV/AIDS; culturally diverse groups; those near end-of-life; intergenerational families; gay, lesbian, bisexual and transgender persons; service members and Veterans; and those of low socioeconomic status.

Disseminates APA Family Caregivers Briefcase for Psychologists to diverse media outlets, including both majority and minority media outlets, and those with audiences across the socioeconomic spectrum.

Considers inclusion of messages within existing and future APA Public Education campaigns on the key issues described in the APA Family Caregivers Briefcase for Psychologists.

Promotes and facilitate psychologists' acquisition of competencies with respect to caregiving practice and research, including promoting opportunities for psychologists to study, research, and obtain skills for intervening with caregivers.

Supports interdisciplinary efforts to increase the competency of psychologists and other health care professionals in identifying and collaborating to address caregiving issues.

Supports the development and replication of culturally competent, developmentally appropriate, family-oriented, evidence-based, high-quality services for family caregivers that are in accessible settings.

Promotes the latest evidence-based psychological treatments/interventions with family caregivers with increased emphasis on community-based treatment approaches, as well as approaches suited to health care settings.

Fosters increased research-practice collaboration for the translation of evidence-based practices into community-based, culturally appropriate, family caregiver interventions and services.

Encourages basic and translational research on caregiver issues aimed at reducing caregiver health risks and improving the quality of life of caregivers and care recipients.

Encourages research on a) how factors of diversity, including age, race/ethnicity, gender, sexual orientation, disability, socioeconomic status, family structure, and immigration status affect the caregiving experience, b) on the best mechanism to translate findings into effective services and c) on how to evaluate services that are developed at the community level.

Acknowledges that we have a responsibility to inform professionals, the public, and policymakers - in language that is accessible for the targeted audience - about the importance of promoting the psychological well-being of caregivers across the life span. Supports public policies to increase caregiver research and prevention and intervention efforts, including innovative models for engaging caregivers in the interdisciplinary health teams caring for the care recipient.

Advocates for access to and appropriate reimbursement for, mental and behavioral health services and psychosocial supports for family caregivers individually and with their care recipient.

Continues to train psychologists as policy advocates and facilitates opportunities for them to advocate for public policies that support family caregivers at the local, state, and federal level.

Encourages APA to work with government agencies and private funding sources to promote research and prevention and intervention efforts to improve the health and well-being of family caregivers.

References

American Psychological Association. (2002) Guidelines on Multicultural Education, Training, Research, Practice, and Organizational Change for Psychologists. Retrieved April 26, 2011, from http://www.apa.org/pi/oema/resources/policy/multicultural-guidelines.aspx

American Psychological Association. (2003). Guidelines for Psychological Practice with Older Adults. Retrieved April 26, 2011, from http://www.apa.org/practice/guidelines/older-adults.pdf

American Psychological Association. (2007). Guidelines for Psychological Practice with Girls and Women. Washington, D.C.: Author. Retrieved April 26, 2011, from http://www.apa.org/about/division/girlsandwomen.pdf

American Psychological Association, Presidential Task Force on Integrated Health Care for an Aging Population. (2008). Blueprint for change: Achieving integrated health care for an aging population. Retrieved April 26, 2011, from http://www.apa.org/pi/aging/programs/integrated/integrated-healthcare-report.pdf

American Psychological Association, Presidential Task Force on Caregivers (2010). APA Family Caregiver Briefcase for Psychologists. Retrieved April 26, 2011, from http://www.apa.org/pi/about/publications/caregivers/index.aspx

American Psychological Association. (2011). Guidelines for the Assessment of Dementia and Age-related Cognitive Decline. Retrieved April 26, 2011, from http://www.apa.org/pi/aging/resources/dementia-guidelines.pdf

American Psychological Association. (2011). Guidelines for Assessment of and Intervention with Persons with Disabilities. Retrieved April 26, 2011, from http://www.apa.org/pi/disability/resources/assessment-disabilities.aspx

American Psychological Association. (2011). Guidelines for Psychological Practice with Lesbian, Gay, and Bisexual Clients. Retrieved April 26, 2011, from http://www.apa.org/pi/lgbt/resources/guidelines.aspx

Alzheimer’s Association (2009). Alzheimer’s Disease Facts and Figures. Alzheimer’s & Dementia, 5, (3).

Brehaut, J.C., Kohen, D. E., Raina, P., Walter, S.D., Russell, D.J., Swinton, M., O’Donnell, M., Rosenbaum, P. (2004) The health of primary caregivers of children with cerebral palsy: how does it compare with that of other Canadian caregivers? Pediatrics, 114, e182–e191. doi: 10.1542/peds.114.2.3182

Butts, D. M. (2005). Kinship Care: Supporting Those Who Raise our Children. Baltimore, MD: Annie E. Casey Foundation. Retrieved April 26, 2011, from http://www.aecf.org/initiatives/mc/readingroom/documents/Kincare.pdf.

Crimmins, E. M. & Beltrán-Sánchez, H. (2010). Mortality and morbidity trends: Is there compression of morbidity? Journal of Gerontology: Social Sciences, 66B, 1, 75–86. doi: 10.1093/geronb/gb1088

Douglas S.L., & Daly B.J. (2003). Caregivers of long term ventilator patients: Physical and psychological outcomes. Chest, 123 (4), 1073-1081. doi: 10.1378/chest.123.4.1073

Easters Seals & the National Alliance for Caregiving (2007). Caregiving in Rural America. Retrieved April 26, 2011, from http://www.easterseals.com

Family Caregiver Alliance (2001). Selected Caregiver Statistics (Fact Sheet). San Francisco, CA: Author.

National Alliance for Caregiving (2009). Caregiving in the U.S. Retrieved April 26, 2011, from http://www.caregiving.org/data/Caregiving_in_the_US_2009_full_report.pdf

Gallagher-Thompson, D., & Coon, D. W. (2007). Evidence-based psychological treatments for distress in family caregivers of older adults. Psychology and Aging, 22, 37-51. doi: 10.1037/0882-7974.22.1.37

Haley, W. E., Roth, D. L., Howard, G., & Stafford, M. M. (2010). Caregiving strain estimated risk for stroke and coronary heart disease among spouse caregivers: Differential effects by race and sex. Stroke, 41, 331-336. doi: 10.1161/STROKEAHA.109.568279

Johnson, R.W & Weimer, J.M. (2006). A Profile of Frail Older Americans and Their Caregivers. Retrieved April 26, 2011, from http://www.urban.org/publications/311284.html

Kaufman A.V., Scogin F., MacNeil G., Leeper J., Wimberly J.(2010). Helping aging parents of adult children with serious mental illness. Social Service Research 36, 445-459. doi: 10.1080/01488376.2010.510949

Lee, S., Colditz, G., Berkman, L., & Kawachi, I. (2003). Caregiving and risk of coronary heart disease in U.S. women: A prospective study. American Journal of Preventive Medicine, 24(2), 113–119. doi: 10.1016/S0749-3797(02)00582-2

Lefley, H. P. (2009). Family psychoeducation for serious mental illness. New York, Oxford University Press. doi: 10.1093/acprof:oso/9780195340495.003.0002

Mittelman, M. S., Haley, W. E., Clay, O. J., & Roth, D. L. (2006). Improving caregiver well-being delays nursing home placement of patients with Alzheimer disease. Neurology, 67, 1592-1599. doi: 10.1212/01.wnl.0000242727.81172.91

National Alliance for Caregiving (2009). Caregiving in the U.S. Retrieved April 26, 2011, from http://www.caregiving.org/data/Caregiving_in_the_US_2009_full_report.pdf

National Alliance for Caregiving.(2005). Young Caregivers in the U.S. Retrieved April 26, 2011, from http://www.caregiving.org/data/youngcaregivers.pdf

National Alliance for Caregiving (2004). Caregiving in the U.S. Washington, DC: Author.

National Gay and Lesbian Task Force Policy Institute (2005) Selling Us Short: How Social Security Privatization Will Affect Lesbian, Gay, Bisexual, and Transgender Retrieved April 26, 2011, from http://thetaskforce.org/downloads/reports/reports/SellingUsShort.pdf

Opinion Research Corporation (2005). Attitudes and Beliefs about Caregiving in the United States: Findings of a national opinion survey. Opinion Research Corporation.

Parents with Disabilities Online (2010). Retrieved April 26, 2011, from http://www.disabledparents.net

Pinquart, M., & Sorensen, S. (2006). Gender differences in caregiver stressors, social resources, and health: An updated meta-analysis. Journal of Gerontology: Psychological Sciences, 61B, P33-P45.

Pinquart, M., & Sörensen, S. (2006). Helping caregivers of persons with dementia: Which interventions work and how large are their effects? International Psychogeriatrics, 18, 577-595. doi: 10.1017/S1041610206003462

Pinquart, M, & Sorensen, S. (2003). Differences between caregivers and noncaregivers in psychological health and physical health: a meta-analysis. Psychology and Aging. 18, 250 –267. doi: 10.1037/0882-7974.18.2.250

President’s Commission on Care for America’s Returning Wounded Warriors (2007). Serve Support, Simplify: Report of the President’s Commission on Care for America’s Returning Wounded Warriors. Retrieved April 26, 2011, from http://www.veteransforamerica.org/wp-content/uploads/2008/12/presidents-commission-on-care-for-americas-returning-wounded-warriors-report-july-2007.pdf

Schulz, R., & Beach, S.R. (1999). Caregiving as a risk factor for mortality: The Caregiver Health Effects Study. Journal of the American Medical Association, 15, 2215–2219.

doi: 10.1001/jama.282.23.2215

Shewchuk, R., & Elliott, T. (2000). Family caregiving in chronic disease and disability: implications for rehabilitation psychology. In R. G. Frank, & T. Elliott (Eds.), Handbook of rehabilitation psychology (pp. 553–563). Washington, DC: American Psychological Association Press. doi: 10.1037/10361-026

Spillman, B.C., & Pezzin, L.E. (2000). Potential and Active Family Caregivers: Changing Networks and the ‘Sandwich Generation.’ The Millbank Quarterly, 78, 3, 347-374. doi: 10.1111/1468-0009.00177

Stajduhar, K. I., Funk, L., Toye , C. Grande, G. E., Aoun, S., & Todd, C. J. (2010). Part 1: Home-based family caregiving at the end of life: a comprehensive review of published quantitative research (1998-2008). Palliative Medicine, 24, 573-593. doi: 10.1177/0269216310371412

The Commonwealth Fund (2005). Issue Brief: A Look at Working-Age Caregivers’ Roles, Health Concerns, and Need for Support. Retrieved April 26, 2011, from http://www.commonwealthfund.org

United States Census Bureau, (2006). 2005 American Community Survey: Tables S1001 and S1002. Washington D.C.: U.S. Census Bureau.

Yee, J.,L & Schulz, R (2000). Gender differences in psychiatric morbidity among family caregivers: a review and analysis. Gerontologist, 40, 2, 147–164.

Zarit, S.H., Reever, K.E., & Bach-Peterson, J. (1980). Relatives of the impaired elderly: Correlates of feelings of burden. Gerontologist, 20, 6, 649-55.