Fact Sheet Fact AARP Public Policy Institute Assessing Family Caregiver Needs: Policy and Practice Considerations Lynn Feinberg Ari Houser AARP Public Policy Institute Produced by the AARP Public Policy Institute with support from The SCAN Foundation and The Commonwealth Fund Caregiver assessment is a systematic process of gathering information about a caregiving situation to identify the specific problems, needs, strengths, and resources of the family caregiver, as well as the ability of the caregiver to contribute to the needs of the care recipient. Effectively assessing and addressing caregiver needs can maintain the health and well-being of caregivers, sustain their ability to provide care, prevent or postpone nursing home placement, and produce better outcomes for the care recipient. Family caregivers are the backbone of the to contribute to the needs of the care long-term services and supports (LTSS) recipient. system. Family members, partners, and close friends provide the vast majority of Caregivers who have their needs assessed often feel acknowledged, valued, and the care and support for loved ones with 6 chronic care needs and functional better understood by practitioners. limitations. However, a caregiver assessment is not an end in itself. According to one expert on In 2009, family caregivers of adults with caregiving, “It’s a tool to help identify the chronic or disabling conditions provided many roles a particular caregiver plays, an estimated 40 billion hours of unpaid the challenges she or he faces, gaps in care with an estimated economic value of knowledge and skills, and the kinds of $450 billion.1 Even for recipients of paid help that will be both useful and services, family members play a critical acceptable to this caregiver and to the role: 72 percent of older adults receiving older adult receiving care.”7 paid LTSS also have a family caregiver.2 Providing quality care for the care Although most family caregivers willingly recipient often requires an understanding undertake this role, an extensive body of of the family caregiver’s situation and research documents the negative physical, needs. However, these needs are emotional, and financial consequences frequently not identified or addressed in caregiving can have.3,4,5 the recipient’s care plan. What Is Caregiver Assessment? While some public programs conduct a “caregiver assessment,” these are often Caregiver assessment refers to a limited to determining the willingness and systematic process of gathering ability of the family caregiver to provide information about a caregiving situation to care, and give little or no consideration to identify the specific problems, needs, the caregiver’s own health and well-being. strengths, and resources of the family Currently, when service providers or care caregiver, as well as the caregiver’s ability managers refer caregivers to services and 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