• Family Caregiver Alliance. Caregiver assessment: principles, guidelines and strategies for change. Report from a national consensus development conference. Volume I. San Francisco (CA): Family Caregiver Alliance; 2006 Apr. 43 p.

This is the current release of the guideline.

Emotional, physical, and financial problems associated with caregiving of frail or disabled individuals

Evaluation
Management
Prevention
Screening

Family Practice
Geriatrics
Internal Medicine
Nursing
Physical Medicine and Rehabilitation
Psychiatry
Psychology

Advanced Practice Nurses
Allied Health Personnel
Health Care Providers
Hospitals
Nurses
Occupational Therapists
Physical Therapists
Physician Assistants
Physicians
Psychologists/Non-physician Behavioral Health Clinicians
Social Workers

• To provide fundamental principles and guidelines for caregiver assessment
• To stimulate adoption of these principles and guidelines across settings (home, hospital, physician offices, community-based programs)
• To facilitate implementation of the change strategies and actions to further formal recognition of caregiver needs in health and home and community-based services (HCBS) settings
• To foster collaboration with key national organizations to advance the work of the consensus conference
• To promote future research and evaluation

Family caregivers (any relatives, partners, friends or neighbors who have a significant personal relationship with, and provide a broad range of assistance for, an older person or an adult with a chronic or disabling condition)

1. Pre-assessment explanation that information is being collected and that the primary purpose is to help the caregiver
2. Caregiver assessment including
   • Identifying the primary caregiver and other informal caregivers
   • Caregiver relationship to care recipient, physical environment, household and financial status
   • Caregiver's perception of health and functional status of care recipients (e.g., activities of daily living and need for supervision, psycho-social needs, cognitive impairment, behavioral problems)
   • Caregiver values and preferences (e.g., perceived filial obligations to provide care, culturally based norms)
   • Caregiver's well-being (e.g., self-rated health, depression or other emotional distress, quality of life)
   • Consequences of caregiving (e.g., perceived challenges and perceived benefits)
   • Caregiver's skill, abilities, and knowledge to provide care recipients with needed care
   • Potential resources that caregiver could choose to use (e.g., social support, coping strategies, financial resources, community resources and services)
3. Use of assessment findings in care planning and service interventions

Not stated

Hand-searches of Published Literature (Primary Sources)
Searches of Electronic Databases

A literature search was performed at the library at the Family Caregiver Alliance's (FCA) National Center on Caregiving and through Internet searches using the Medline/PubMed database. Additionally, four background papers (included in Volume II of the final report; see "Availability of Companion Documents" field of this summary) were commissioned prior to the consensus conference to review the published literature from a research, practice, policy, and international perspective for assessing the needs of family caregivers.

Not stated

Expert Consensus

Not applicable

Review
Review of Published Meta-Analyses

Not stated

Expert Consensus (Consensus Development Conference)

Not applicable

Published cost analyses were reviewed.

Not stated

Not applicable

Working Definitions

Family Caregiver is broadly defined and refers to any relative, partner, friend, or neighbor who has a significant personal relationship with, and provides a broad range of assistance for, an older person or an adult with a chronic or disabling condition. These individuals may be primary or secondary caregivers and live with, or separately from, the person receiving care.

Care Recipient refers to an adult with a chronic illness or disabling condition or an older person who needs ongoing assistance with everyday tasks to function on a daily basis. These tasks may include managing medications, transportation, bathing, dressing, and using the toilet. The person needing assistance may also require primary and acute medical care or rehabilitation services (occupational, speech, and physical therapies).

Caregiver Assessment refers to a systematic process of gathering information that describes a caregiving situation and identifies the particular problems, needs, resources, and strengths of the family caregiver. It approaches issues from the caregiver's perspective and culture, focuses on what assistance the caregiver may need and the outcomes the family member wants for support, and seeks to maintain the caregiver's own health and well-being.

Fundamental Principles for Caregiver Assessment

Conference participants agreed upon a set of seven basic principles to guide caregiver assessment policy and practices:

1. Because family caregivers are a core part of health care and long-term care, it is important to recognize, respect, assess, and address their needs.
2. Caregiver assessment should embrace a family-centered perspective, inclusive of the needs and preferences of both the care recipient and the family caregiver.
3. Caregiver assessment should result in a plan of care (developed collaboratively with the caregiver) that indicates the provision of services and intended measurable outcomes.
4. Caregiver assessment should be multidimensional in approach and periodically updated.
5. Caregiver assessment should reflect culturally competent practice.
6. Effective caregiver assessment requires assessors to have specialized knowledge and skills. Practitioners' and service providers' education and training should equip them with an understanding of the caregiving process and its impacts, as well as the benefits and elements of an effective caregiver assessment.
7. Government and other third-party payers should recognize and pay for caregiver assessment as a part of care for older people and adults with disabilities.

Guidelines for Practice

1. General Considerations
   1. Public and private programs should recognize key dimensions of family caregiving:
      • The unit of care is the care recipient and the caregiver. (This builds on the hospice and palliative care movement that has long embraced the patient/family as the unit of care.) ("Clinical practice guidelines for quality palliative care", 2004)
      • The caregiver is part of the care team and service plan.
      • Services should be consumer directed and family focused.
      • Caregiver assessment and support improves outcomes and continuity of care for the care recipient.
   2. The form, content and process for caregiver assessment should be tailored based upon the caregiving context, service setting, and program.
      • There is no set protocol to follow for caregiver assessment and no single approach is optimal in all care settings and situations.
      • Purpose, ethical issues, and technological resources and capabilities all have to be considered; these vary by settings and existing service programs.
   3. The reasons for conducting a caregiver assessment need to be clear to both assessor and caregiver. These are:
      • To identify the primary caregiver and other informal caregivers.
      • To improve caregiver understanding of the role and what abilities are needed to carry out tasks.
      • To understand the caregiving situation—including service needs, unresolved problems and potential risks—in order to meet the needs of the caregiver.
      • To identify services available for the caregiver and provide appropriate and timely referral for services.
      • The process should include determining the care recipient's eligibility for services that also help the caregiver.
   4. Assessment findings should be used in care planning and service interventions.
      • Assessment is not an end in itself but should empower caregivers to make informed decisions and link caregivers with community services.
   5. Available information technology should be used to share assessment findings and make it easier for the caregiver to access help.

2. Who Should Be Assessed?
   1. Any person who self-identifies as a family caregiver should be offered a screening, leading to an assessment as appropriate.
   2. Some families may require a group interview; others may need multiple individual interviews.
   3. When multiple caregivers are involved, conflict resolution may be necessary.

3. What Should Be Included in a Caregiver Assessment?
   1. Caregiver assessment should be driven by:
      • A conceptual framework
      • The service context and programs (e.g., focus of the intervention)
      • Representation of subjective perceptions and preferences along with objective characteristics of the caregiver
      • Factors affecting an individual's ability to assume a caregiving role: physical, emotional, cultural, educational and environmental, including the care recipient's ability to accept assistance.
   2. Seven identified domains, and related constructs, are relevant. These are applicable across settings (e.g., home, hospital) but need not to be measured in every assessment. Domains and specific questions may differ for:
      • Initial assessments compared to reassessments (the latter focus on what has changed over time)
      • New versus continuing care situations
      • An acute episode prompting a change in caregiving versus an ongoing need
      • Type of setting and focus of services.

Recommended Domains and Constructs

4. When Should Assessment Occur?
   1. A caregiver assessment process should be used at several points in time.
      • Initial information about the caregiver's perspective should be obtained as early as possible when becoming a caregiver is apparent and the caregiver is ready, as shown by seeking advice or asking a question that indicates distress, need or "a call for help."
      • Screening is distinct from assessment, and both are part of a multidimensional, staged process.
        • In partnership with the caregiver, screening should have the ability to branch and go deeper, in a logical sequence involving different professional disciplines where appropriate.
        • Screening should identify at-risk caregivers.
        • If the caregiver does not want to proceed with screening, information should be provided on how to get back in touch for assistance in the future.
      • Reassessment should be built into the process to identify any new challenges and to assess change over time in the caregiving situation:
        • Update information as often as needed.
        • Provide the caregiver with a contact to call upon if the situation changes.
        • Make a quick "check-in" call to the caregiver periodically (e.g., every three to six months) to ask "Has anything changed?" or "How are things going?"
   2. The opportunity for a caregiver assessment should be triggered through:
      • Professional referrals—such as those from pharmacists, physicians, clergy, parish nurses, home care workers, Adult Protective Service, and the courts
      • Self-referral
      • Diagnosis of a medical condition
      • Decreased functional status of caregiver or care recipient (e.g., no longer safe to leave care recipient alone)
      • New patient, health plan enrollee, or Medicare beneficiary
      • Complaint from a care recipient
      • Care transitions (e.g., from home to assisted living or nursing home, or from hospital to home)
      • Caregiver workplace issues (performance, attendance problems)
      • Concern from another family member or friend.

5. How and Where Should Caregiver Assessment Be Conducted?
   1. It should always be clear to the caregiver when an assessment is taking place. That is, it should be explained explicitly that information is being collected and that the primary purpose is to help the caregiver.
      • Some caregivers may find the term "assessment" objectionable, seeing it to suggest a test of their competency.
      • Calling the process an interview to obtain the family's perspective or a "caregiver interview" may be preferable so long as the process and purpose are transparent.
      • Caregiver assessment should always be framed in the context of "I'd like to know how we could help."
   2. Whenever possible, the caregiver's preferences in conducting the assessment should be determined and accommodated.
      • Some caregivers want to know the questions beforehand or to do a self-screening first (online or otherwise); others do not.
        • The location and time of day for conducting the assessment should depend upon the caregiver's situation and convenience, whether over the telephone (which may not be optimal), in the home (where the care recipient may be present), at the caregiver's place of employment, agency office, or online.

6. Who Should Conduct Caregiver Assessment?
   1. A range of professionals can conduct caregiver assessments (e.g., physicians, nurses, social workers, care managers).
      • Professional differences exist in the approach to assessment and these differences can be strengths that benefit the family.
      • Staying with the consumer focus can bridge professional differences.
      • Working as a team across professional disciplines allows for cross-fertilization so that the family comes out ahead.
   2. Assessors need to be trained in caregiver assessment and have the requisite abilities, knowledge and skills.

Refer to the Table "Recommended Knowledge, Abilities, and Skills for Assessors" in the original guideline document.

7. How Should Care Recipient and Caregiver Assessments Be Connected?
   1. Strategies useful in some settings and practices to connect the two assessments include:
      • Incorporating care recipient's needs and preferences into the caregiver assessment
      • Integrating the caregiver in planning and assessment for the care recipient, using a family-centered approach
      • Maintaining flexibility as to who conducts assessment
      • Using technology to enhance accessibility of assessment information and integrating electronic information systems across settings
      • Using the concept of a "care navigator" or "point person" to integrate assessments and respond to care recipient and family needs across settings.

None provided

The type of supporting evidence is not specifically stated for each recommendation.

The recommendations were based primarily on a comprehensive review of published reports. In cases where the data did not appear conclusive, recommendations were based on the consensus opinion of the group.

• Increased formal recognition of family caregivers and family-centered care
• Appropriate systematic assessment of caregivers' needs in health care and in home and community settings
• Improved support for family caregivers resulting in improved physical and emotional health
• Consistent approaches to caregiver assessment will help practitioners better understand family needs and capacities; enable family caregivers to access support and remain in their caregiving role as long as appropriate; assure optimal outcomes for the care recipient; and provide solid information to policymakers and program administrators to improve service delivery.

Not stated

Driving Change: Strategies and Actions

Conference participants agreed that policy changes are needed at the federal and state levels to establish systematic caregiver assessment as a basic component of good practice in health care and home and community-based care settings.

Conference participants supported this overall policy objective:

• Consider standardized assessment for all publicly funded programs to alleviate the need for family caregivers to repeat assessments each time they apply for help from a new program.

Three related suggestions were put forth:

• Include the caregiver's role and service needs in the service plan for a federal or state program if the entitled beneficiary's ability to choose a long-term care option depends upon having the assistance of a family caregiver.
• Provide reimbursement and reporting for any caregiver assessments that are mandated.
• Include data collection from caregiver assessments in the current electronic medical record and health information technology initiatives under development within the U.S. Department of Health and Human Services, Office of the National Coordinator (ONC) for Health Information Technology.

Conferees set the following priorities for strategies and specific actions to bring us measurably closer to having systematic assessment as part of routine practice (in rank order, top ranked item first):

One to Three Years

1. Build support for family caregivers among the public, policymakers, government officials, practitioners, insurers, employers, and funders:
   • Add a question on caregiving to the U.S. Census.
   • Add questions on caregiving to the Centers for Disease Control and Prevention's (CDC) Behavioral Risk Factor Surveillance System (BRFSS) and state surveys.
   • Involve professional associations to promote the use of caregiver assessments (e.g., American Geriatrics Society, American College of Physicians, American Psychological Association, National Association of Social Workers).

2. Conduct demonstration projects to develop and test caregiver assessment practices and protocols as part of the Older Americans Act's National Family Caregiver Support Program (NFCSP).
3. Include caregiver assessment by trained assessors in the NFCSP, Alzheimer Disease Demonstration Grants to States (ADDGS) and the Aging and Disability Resource Centers (ADRC). To train assessors, use:
   • Written materials
   • Case studies
   • Videos

4. Recognize the role of family caregivers in the Medicare Chronic Care Improvement Pilot Program and Demonstration through performance monitoring and evaluation.
5. Incorporate caregiver assessment and support needs in Medicaid home and community-based services (HCBS).
6. Develop caregiver assessment algorithms (i.e., step-by-step compute problem-solving procedures) to assist decision making. These algorithms should encompass: multiple entry points for caregivers, multiple service providers, links to interventions for caregivers, and different types of assessments.
7. Add family caregiver assessment as a sixth category of service under the NFCSP and provide a code for reporting it.
8. Expand dialogue with consumers to discuss caregiver assessment in consumer-directed models of care including discussion on issues related to the developmentally disabled population.

Four to Six Years

1. Adopt a caregiver policy at Centers for Medicare and Medicaid Services (CMS) to acknowledge the role and contributions of caregivers in the Medicare and Medicaid programs.
   • Incorporate "quality side" levers. For example, in Medicare hospital discharge planning, caregiver assessment must be made part of a "safe and adequate discharge."

2. Develop professional education and training curricula that include caregiver assessment.
   • Caregiver modules should be developed for physicians, social workers, physical therapists, registered nurses and occupational therapists.
   • These should be used in continuing education and student training programs.

3. Advocate for changing record keeping and information systems to include caregiver-related data elements. Focus on:
   • Large health systems (such as Kaiser Permanente and Department of Veterans Affairs)
   • Mandated reporting systems (such as the Minimum Data Set)
   • Smaller electronic record systems.

4. Support development of a uniform data set and evaluative research to clarify:
   • Caregivers' needs and contributions
   • Resources to meet needs of caregivers
   • Impact of different assessment approaches

Staying Healthy

Effectiveness
Patient-centeredness

• Family Caregiver Alliance. Caregiver assessment: principles, guidelines and strategies for change. Report from a national consensus development conference. Volume I. San Francisco (CA): Family Caregiver Alliance; 2006 Apr. 43 p.

Not applicable: The guideline was not adapted from another source.

2006 Apr

Family Caregiver Alliance - Professional Association

The consensus conference was primarily funded by The Robert Wood Johnson Foundation with additional support provided by the Archstone Foundation and The California Endowment.

Project Advisory Committee

Consensus Conference Participants: Georgia Anetberger, PhD, Assistant Professor, Health Care Administration Program, Cleveland State University; David Bass, PhD, Director of Research, Margaret Blenkner Research Institute, Benjamin Rose; Kathy Brandt, MS, Vice President, Professional Leadership and Consumer and Caregiver Services, National Hospice and Palliative Care Organization; Ashly Brooks-Danso, MSW, Co-Director, National Center for Gerontological Social Work Education; Cathy Cope, MSW, Social Science Research Analyst, Centers for Medicare & Medicaid Services; Mary Ellen Kullman, MPH, Vice President, Archstone Foundation; Adam W. Darkins, MD, Chief Consultant, Office of Care Coordination, U.S. Department of Veterans Affairs; *Adrienne Dern, Deputy Director, National Association of Area Agencies On Aging; *Virginia Dize, MS, Associate Director, Home and Community Based Services, National Association of State Units on Aging; Jann Dorman, Director of Elder Care, Kaiser Permanente; Pamela Doty, PhD, Senior Policy Analyst, Office of the Assistant Secretary for Planning and Evaluation, U.S. Department of Health and Human Services; Carol Farquahar, Executive Director, Grantmakers in Aging; *Lynn Friss Feinberg, MSW (Project Director) Deputy Director, National Center on Caregiving, Family Caregiver Alliance; Scott Miyake Geron, PhD, Director and Principal Investigator, Institute for Geriatric Social Work, Boston University; *Laura N. Gitlin, PhD, Director, Center for Applied Research On Aging and Health, Thomas Jefferson University; *Myra Glajchen, DSW, Director, Institute for Education and Research in Pain and Palliative Care, Beth Israel Medical Center; *Robyn Golden, MA, LCSW, Director of Older Adult Programs, Rush University Medical Center; Gladys Gonzales-Ramos, PhD, Associate Professor of Social Work, NYU School of Social Work; Rick Greene, MSW, Aging Program Specialist, U.S. Administration on Aging; Nancy Guberman, MSW, Professor, University of Quebec in Montreal; Mary Guthrie, MBA, Acting Director, Center for Planning & Policy Development, U.S. Administration on Aging; Lisa Gwyther, MSW, Director, Duke Aging Center Family Support Program and Bryan Alzheimer's Disease Research Center, Duke Univesity Medical Center; Hilari Hauptman, MSW, Family and Kinship Caregiver Program Manager, Washington State Department of Social and Health Services, Aging and Disability Services Administration; Julianne Howell, PhD, Project Officer, Division of Chronic Care Improvement Programs, Centers for Medicare & Medicaid Services; Ronda Hughes, PhD, MHS, RN, Senior Health Scientist Administrator, Agency for Health Care Research and Quality, U.S. Department of Health and Human Services; Gail Hunt, President and CEO, National Alliance for Caregiving; Rosalie Kane, DSW, Professor, School of Public Health, University of Minnesota; Kathy Kelly, MPA, Executive Director, Family Caregiver Alliance; *Carol Levine, MA, Director, Families and Health Care Project, United Hospital Fund; Jane Isaacs Lowe, PhD, Senior Program Officer, The Robert Wood Johnson Foundation; Waverly Lowell, Family Caregiver Consumer Representative; *Katie Maslow, MSW, Associate Director, Quality Care Advocacy, Alzheimer's Association; Donna McDowell, MS, Director, Bureau of Aging and Disability, Wisconsin Department of Health & Family Services; Suzanne Mintz, MS, President and Co-Founder, National Family Caregivers Association; Anne Montgomery, MS, Health Policy Associate, Alliance for Health Reform; Rhonda Montgomery, PhD, Helen Bader Endowed Professor of Applied Gerontology and Professor of Sociology, University of Wisconsin-Milwaukee; Kathy O'Brien, RN, MS, Gerontology Consultant, Metlife Mature Market Institute; Susan Parks, MD, Clinical Assistant Professor, Thomas Jefferson University; Ginny Paulson, LBSW, Program Manager, Iowa Family Caregiver Program, Iowa Association of Area Agencies on Aging; Cheryl Phillips, MD, Director, Skilled Nursing and Chronic Care, Sutter Health; Carol Raphael, MPA, President and CEO, Visiting Nurse Service of New York; *Susan Reinhard, PhD, RN, Professor and Co-Director, Center for State Health Policy, Rutgers, the State University of New Jersey; Lisa Rotegard, MA, Supervisor of Home and Community Based Services, Minnesota Department of Human Services; Andrew Scharlach, PhD, Kleiner Professor of Aging; University of California at Berkeley School of Social Welfare; Richard Schulz, PhD, Professor of Psychiatry and Director, University Center for Social and Urban Research, University of Pittsburgh; Lorie Simon-Rusinowitz, PhD, Associate Professor, Research Director, Cash and Counseling Demonstration and Evaluation Project, University of Maryland Center on Aging; Sarah Sutro Steenhausen, MSG, Assistant Secretary for Long Term Care, California Health and Human Services Agency; Bonnie Teschendorf, PhD, Director, Quality of Life Science Department, American Cancer Society; *Lorie Van Tilburg, LCSW, Executive Director, Southern Caregiver Resource Center; Meg Wallhagen, PhD, Professor, Department of Physiological Nursing, University of California at San Francisco; Carol Whitlatch, PhD, Assistant Director of Research, Margaret Blenkner Research Institute, Benjamin Rose; Jennifer Wolff, PhD, Assistant Professor, Bloomberg School of Public Health, Johns Hopkins University; May L. Wykle, PhD, Dean and Florence Cellar Professor of Nursing, Frances Payne Bolton School of Nursing, Case Western Reserve University; Steven H. Zarit, PhD, Professor of Human Development, Pennsylvania State University

*Members of the Project Advisory Committee

Not stated

This is the current release of the guideline.

None available

This NGC summary was completed by ECRI on September 28, 2006. The information was verified by the guideline developer on October 23, 2006.