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ding quality care for the care for ding care quality AARP Public Policy Institute Policy Public AARP However, a caregiver assessment is not an is an not assessment a caregiver However, on According oneend expert in to itself. the “It’s helpcaregiving, a to identify tool play caregiver roles a particular many in gaps faces, or he she the challenges theof skills,knowledge kinds and and and help be that will both useful the to and this caregiver to acceptable care.” receiving older adult Provi recipient requires understanding an often the situationand caregiver’s of family are needs these However, needs. inorfrequently addressed identified not plan. care the recipient’s to contribute to the needs of the of care to the to contribute needs recipient. havewho their assessed Caregivers needs often feel valued, acknowledged, and better understood by practitioners. conduct a Whilepublic some programs often these are assessment,” “caregiver and willingness the determining to limited provide to caregiver family the of ability consideration little tocare, or no and give the caregiver’s health and own well-being. Curre and to services caregivers refer managers oduce bet 2 , and pr 5 , 4 , 3 0 billion hours of unpaid0 billion of hours Even for recipients of paid recipients Even for of 1
mily members, partners, and mily members, s Caregiver Assessment? term services and supports (LTSS) (LTSS) supports and services term sessing Family Caregiver Needs: caregivers willingly willingly caregivers hough most family What I services, family members play a critical critical a play members family services, role: olderadults 72 percentreceiving of caregiver. a family also have LTSS paid Alt to a refers assessment Caregiver gathering of process systematic to about information a situation caregiving needs, problems, specific the identify the of family strengths, resources and ability well as the caregiver’s caregiver, as system. Fa system. caregivers adults withIn 2009, family of chronicconditions disabling provided or 4 estimated an of value economic estimated an care with $450 billion. Family caregivers are the backbone of theof backboneFamily caregiversthe are long- of vast providetheclose majority friends supportthe ones with care and loved for chroniccare needs and functional limitations. of undertake body this role, an extensive physical, the negative documents research emotional, and financialconsequences caregiving have. can AARP Public Policy Institute Policy Public AARP The SCAN Foundation Institute the Public withProduced support from AARP Policy by Fund and The Commonwealth a about information gathering of process assessmentCaregiver is a systematic and resources the needs, strengths, problems, specific identify to situation caregiving needs the to contribute of to well caregiver the ability caregiver, as as the family the of needs can maintain assessing caregiver and addressing Effectively recipient. care the of or provide to prevent care, ability their sustain caregivers, of and well health the -being home placement nursing postpone Lynn Feinberg Houser Ari As Policy and Practice Considerations and Practice Policy Fact Sheet Assessing Family Caregiver Needs: Policy and Practice Considerations supports, they often do so with little systematic knowledge about which Fundamental Principles for services are most likely to benefit the Caregiver Assessment 8 family caregiver at that point in time. Consensus exists among leaders in health care and in LTSS on a set of seven basic An effective caregiver assessment— principles to guide caregiver assessment in conducted by a health care or social policy and practice.21 service professional—should approach care issues from the caregiver’s viewpoint 1. Because family caregivers are a core part and culture. An important component of of health care and long-term services and the assessment process for family supports, it is important to recognize, caregivers is to have someone to talk to respect, assess, and address their needs. about their circumstances and the needs of 2. Caregiver assessment should embrace a the care recipient. Research has shown family-centered perspective, inclusive of that communicating with someone who the needs and preferences of both the understands caregiving issues and who care recipient and the family caregiver. listens to the family member’s concerns can improve outcomes.9,10 3. Caregiver assessment should result in a plan of care (developed collaboratively Why Is It Important to Assess and with the caregiver) that indicates the Respond to Family Caregiver provision of services and intended Needs? measurable outcomes. 4. Caregiver assessment should be Experts in both health care and LTSS multidimensional in approach and agree on the importance of assessing periodically updated. caregiver needs, and have reached consensus about guiding principles and 5. Caregiver assessment should reflect practice guidelines (see box). culturally competent practice. 6. Effective caregiver assessment requires Without systematic assessment of family assessors to have specialized knowledge caregiver needs, caregiving family and skills. Practitioners’ and service members’ own health and well-being may providers’ education and training should be at risk, which may, in turn, jeopardize equip them with an understanding of the their ability to continue providing care.11 caregiving process and its impacts, as Clinicians, researchers, and policy well as the benefits and elements of an analysts are calling for expanding effective caregiver assessment. assessment of the individual with chronic or disabling conditions to include 7. Government and other third-party payers assessment of the family caregiver as a should recognize and pay for caregiver key component of chronic care assessment as a part of care for older delivery.12–20 people and adults with disabilities. Service interventions that include an explicit and systematic focus on assessing supporting caregivers can reduce burdens the needs, strengths, values, and and health risks that can impede a preferences of family caregivers are caregiver’s ability to provide care. important to sustain caregiving families. When family caregivers receive When family caregivers are supported, appropriate support services tailored to they are better able to continue in this their specific needs—such as care role, thereby reducing the cost of both consultation, education and training, public and private services. Effectively counseling, support groups, and respite
2 Assessing Family Caregiver Needs: Policy and Practice Considerations care—there can be better outcomes for caregiver needs, and how assessment both the caregiver and the care recipient. information is used to support family Research shows that having a family caregivers. This project will be used to caregiver can prevent unnecessary enhance the caregiver assessment hospitalizations, and prevent or delay measures in the future (including in the nursing home use among care recipients. Scorecard) and provide promising Thus, assessing and addressing family practices for state programs to use in caregivers’ needs is an important addressing caregivers’ needs.23 component of public programs’ overall approach to providing LTSS. States can address identified caregiver needs by including services (such as Caregiver Assessment in the States respite, education, and training) for family caregivers’ own needs as part of a person- States have incorporated caregiver and family-centered care plan or by assessments to varying degrees in publicly referring caregivers to other supportive funded LTSS programs (including services. Vehicles for providing such Medicaid waivers, state plan services, supports to caregivers include publicly aging services, and others). funded HCBS programs, hospital discharge planning, chronic care The report Raising Expectations: A State coordination and care transitions Scorecard on Long-Term Services and programs, and other new models of care Supports for Older Adults, People with under the Affordable Care Act.24 Physical Disabilities, and Family However, it is often the case that such Caregivers defined a high-performing services to address caregivers’ needs are LTSS system as one in which family not included in the care plan for the caregiver needs are identified and recipient of services/program participant. addressed so that the system supports and Adequate public funding for assessing and sustains caregiving families without addressing caregivers’ needs can be a 22 overstressing them. In the dimension of barrier to implementation of effective support for family caregivers, a measure programs. of the degree to which states say that they assess and respond to family caregiver Conclusion needs was included as part of a composite indicator of system and legal supports for Effective and comprehensive assessment caregivers. The Scorecard provides a is a key step to determining appropriate baseline set of indicators to evaluate support services for family caregivers, LTSS system performance, and we hope especially when the care recipient’s plan to have a more robust measure of of care depends upon the contributions of caregiver assessment for the next family members. With the movement scorecard. toward person- and family-centered care, there is growing recognition of the need to A current AARP Public Policy Institute expand assessment of the individual with project, in collaboration with the Family chronic or disabling conditions to include Caregiver Alliance, is conducting a assessment of the family. Because family comprehensive review of caregiver support is essential to remaining in one’s assessment tools, protocols, and best home and in the community, better practices within Medicaid home and assessment and response to caregivers’ community-based services (HCBS) needs through the public programs that waiver programs. This project will provide LTSS should be a public policy increase understanding of the process for priority at both the federal and state conducting a caregiver assessment, the levels. types of questions included to assess
3 Needs: Coordinating Care Across All Services patients,” Psychological Sciences and Social Sciences 66 depressive symptoms: Preliminary findings from a randomized controlled study,” http://www.caregiver.org/caregiver/jsp/content_node.jsp?nodeid=1695. Caregivers Washington, DC: AARP, November 2009). Funded by the MetLife Foundation. 108 Disabilities in the Community: Data from the National Long- and Costs of Family Caregiving, The SCAN Foundation, September 2011). Policy Institute,Commonwealth The Fund, CaregiversFamily (Washington, DC: Adults, People with Physical Disabilities, and on Long- Adults U.S. funding from The John A. Hartford Foundation and the R. National Consensus DevelopmentConference, withpersons advanced cancer,” Research in Nursing& Health (Washington, DC: Congressional Research Service, October 24, 2008). Caregiver as Dementia Increases in the Care Recipient caregivers,”family The Gerontologist terminal illness: The experience of patients and their caregivers,” Annalsof Internal Medicine 24 23 22 21 20 19 18 17 16 15 14 13 12 11 10 9 8 7 6 5 4 3 2 1 Endnotes and Policy Needs: Practice Considerations Family Caregiver Assessing (2011): 47– for a Loved One R
M. Bevans and E. M. Sternberg, “Caregiving burden, stress, and health effects among family caregivers of adult cancer R. J. V. Montgomery, J. Kwak, Kosloski,K. and K. Valuch, “Effects of the TCARE intervention on caregiver burden and C. Levine, “The Hospital Nurse’s Assessment of Family Caregiver Needs,” American Journal of Nursing Family Caregiver Alliance, Caregivers Count Too! A Toolkit to Help Practitioners Assess the Needs of Family Evercare and NAC, National Alliance for Caregiving (NAC) and AARP, Caregiving in R. Schulz and P. R. Sherwood, “Physical and mental health effects of family caregiving,” American Journal of Nursing Trends Redfoot, D. and in M.L. J.Gibson, Houser, FamilyA. Caregiving and Paid Home Care for Older People with L. Feinberg, S. Reinhard,C. A. Houser, and R. Choula,
eport 2010- Feinberg et al., et al., Feinberg This project is supported by the AARP Foundation through and Houser, A. Kassner, E. S. Reinhard, C. Family S. R. Mazanec, B. J. Daly, S. L. Douglas, and A. R. Lipson, “Work productivity and health of informal caregivers of Levine, hospital“The nurse’s assessment of family caregiver needs.” NationalAssociationof Social Workers, H. J. Komisar J. and Feder, Transforming Care for Medicare Beneficiaries with Chronic Conditions and Long- Colello, K. care,” “Caregiver Swartz, K. and Collins G. L. Caregiving Costs: DecliningPittsburgh, of Health in University and the Alzheimer’s Caregiving for Alliance National et al., Feinberg Bevans and Sternberg, “Caregiving burden, stress, and health effects among family caregivers of adult cancer patients,” K. S. Judge et al., “Partners in dementia care: A care coordination intervention for individuals with dementia and their E. J. Emanual, D. L. Fairclough, J. Slutsman, and L. L. Emanual, “Understanding economic and other burdens of
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(San Francisco, CA: National Center on Caregiving, Family Caregiver Alliance, June 2006), 51. Raising Expectations:State A Scorecard 09 09
Family Caregiving to the Older Population: Background, Federal Programs, and Issues for Congress http://www.socialworkers.org/practice/standards/NASWFamilyCaregiverStandards.pdf
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Alliance, Alliance, Family Caregivers— CaregiverPrinciple Assessment:s, Guidelines and Strategies for Change. Report from a
AARP Public Policy Institute Insight on the Issues 51 (Washington, DC: AARP, June 2011). N: N: Evercare, and Bethesda, MD: 2007).NAC, AARP Public 51,2 no. (2011):261 – . .
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– (2012): 398 7. © Reprinting wi 202-434 www.aarp.org/ppi 601 E Street, NW, Washington, DC 20049 AARP Institute Policy Public 258 Sheet Fact
the U.S., 2009 2012, AARP.
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