Audit Commission (2004). Support for Carers of Older People. London, UK: Belmont Press.
This is the fifth report in the Audit Commission’s series looking at ways to promote the independence and well-being of older people.
Australian Institute of Health and Welfare (2004). Carers in Australia: Assisting Frail Older People and People with a Disability. Canberra, Australia: Author. (carers in australia.pdf)
This report is a joint initiative of the Australian Institute of Health and Welfare (AIHW) and the Australian Government Department of Health and Ageing. It was principally authored by Cathy Hales, with significant contributions from Diane Gibson, Frieda Rowland, Paula Laws and Anne Jenkins.
The motivation for an exposition on carers in Australia came from an AIHW project that analysed the likely impact of social trends on future numbers of primary carers (Jenkins et al. 2003). Building on this earlier work, the present report uses data from the 1998 Australian Bureau of Statistics (ABS) Survey of Disability, Ageing and Carers to present a picture of informal care in contemporary Australiawho are the primary carers, who do they assist, and what does caring involve? It explores the impact of caring work and patterns of formal service use with informal care.
The findings of this report are based on national data that were 5 years old at the time of writing. However, results from the survey are in close agreement with smaller scale
Australian studies and international research on carers and caring. Differences in methodology between the 1998 survey and earlier ABS surveys render time series analysis problematic. Analysis of the data from the 2003 ABS Survey of Disability, Ageing and Carers, due for release in late 2004, will provide a basis for comparison with the projections contained in this report.
Bass, D. (2002). Content and Implementation of a Caregiver Assessment. [Issue Brief]. Washington, D.C.: Administration on Aging.
Provides tips for developing the content of a caregiver assessment as well as describes the procedures for implementing and responding to assessment information. The brief includes user-friendly tables which present a broad range of characteristics that might be considered for inclusion in caregiver assessment.
Baxter, E. (2000). Caregiver assessment: Learn about the caregiver, distinct from the person with dementia. Alzheimer’s Care Quarterly, 1 (3), 62-70.
Caregivers are often assessed as part of the care plan for someone with dementia. Unfortunately, this assessment is often only made to clarify the degree to which the person can carry out caregiving tasks. Little has been written with regards to the caregiver as a unique and separate individual with needs and issues of his or her own, separating the caregiver out as a separate component needing a full assessment. This article proposes some areas of assessment related to the caregiver that can be gathered over time while carrying out the care plan for the person with dementia. The key areas described are in addition to, not instead of, a traditional assessment of the person with dementia.
Berg-Weger, M., Rubio, D., & Tebb, S. (2001). Strengths-based practice with family caregivers of the chronically ill: Qualitative insights. Families in Society, 82 (3), 263-272.
Using a strengths-based perspective, this paper looks at the experiences of family caregiving to the chronically ill. Qualitative research allows researchers and practitioners to gain a deeper understanding of the family caregiver experience, adding breadth to the assessment and intervention process. Themes generated from a qualitative inquiry on the impact of the caregiving experience for the caregiver are explored and discussed in terms of implications for strengths-based practice, thus providing a positive experience for the caregiver and care recipient.
Berkman, B., Maramaldi, P., Breon, E., & Howe, J. (2002). Social work gerontological assessment revisited. Journal of Gerontological Social Work, 40 (1-2), 1-14.
Research has learned much in the last forty years about the factors critical in a gerontological social work assessment. However, assessment must be constantly readdressed, because the context of health care changes and the research technology that enables the study of factors critical to the assessment process becomes more sophisticated.
This paper presents the evolution of assessment research and identifies critical assessment factors as related to the changing social work practice in the context of the country’s changing health care environment.
Bogardus, S., Bradley, E., Williams, S., Maciejewski, P., Gallo, W. & Inouye, S. (2004). Achieving goals in geriatric assessment: Role of caregiver agreement and adherence to recommendations. Journal of the American Geriatrics Society, 52 (1), 99-105.
OBJECTIVES: To determine predictors of recommendation adherence and goal attainment of family caregivers of patients at a geriatric assessment center. DESIGN: One-year prospective cohort study. SETTING: Outpatient geriatric assessment center in Connecticut. PARTICIPANTS: Two hundred consecutive new patients and their family caregivers. MEASUREMENTS: Family caregivers were interviewed after geriatric assessment to ascertain their treatment goals for the patient. Medical records were reviewed to identify treatment recommendations. Family caregivers were interviewed 1 year later to assess adherence to recommendations and attainment of goals. RESULTS: Follow-up interviews were completed with 176 (88%) family caregivers. Common recommendations pertained to physician referral (71%), medications (46%), counselling/education (31%), diagnostic tests (30%), residential planning (26%), healthcare planning (21%), and community services (21%). Goal attainment was reported in 44% to 67% of the patient cases, depending on goal category. Caregiver agreement with recommendations predicted adherence to recommendations (adjusted relative risk (ARR)=1.99, 95% confidence interval (CI)=1.04-5.92) after adjusting for available clinical and demographic factors. In addition, adherence to recommendations predicted goal attainment in adjusted analyses (ARR=1.70, 95% CI=1.09-2.64). CONCLUSION: This study revealed a broad range of treatment recommendations in geriatric assessment and suggests that agreeing with recommendations can promote adherence and that adherence can promote goal attainment. Taken together, the results imply that articulating shared treatment recommendations may improve the quality of health care.
Bradley, P. (2003). Family caregiver assessment – Essential for effective home health care. Journal of Gerontological Nursing, 29, 29-36.
Home health care nurses do not routinely assess the health of family caregivers despite their essential contribution to the client’s care. In this study, home care nurses collected data on 51 older family caregivers from their caseloads to assess their health. The average age of the caregivers was 75.1 years (SD = 6.09). Most (66.7%) were women and were the home health client’s spouse (82.4%). These individuals had been caregivers for up to 20 years, and reported spending an average of 13.3 hours per day in this role (SD = 9.15). Approximately half (n = 25) of the caregivers reported poor or fair health, with 33.3% (17) reporting a decline in their health over the previous 6 months.
Unmet health needs included the need for blood pressure monitoring, mammograms, PAP smears, and prostate examinations. Referrals to other health care providers or community agencies were required by 78.4% of the caregivers, 78.4% required health teaching, and 23.5% required home health services themselves. Those requiring home health care were more likely to be on more medications and classify their health as fair or poor. These findings confirm those of a pilot study conducted on 51 other family caregivers.
Nurses serving the geriatric population need to conduct systematic family caregiver assessments to identify caregiver health needs that could impair their caregiving ability. In particular, for home health care to be effective, nurses must conduct caregiver assessments.
Carradice, A., Shankland, M. C., & Beail, N. (2002). A qualitative study of the theoretical models used by UK health nurses to guide their assessments with family caregivers of people with dementia. International Journal of Nursing Studies, 39, 17-26.
Some researchers suggest that nurse training does not provide adequate theoretical knowledge to guide mental health nurses’ work with carers of people with dementia. In recent years theoretical guidance for working with carers has emerged in the nursing literature. However, little attention has been given to theory practice links. This study used interpretative phenomenological analysis to investigate the theoretical model used by nurses to guide carer assessments. During the analysis the data evolved into a description of the model underlying the nurses’ work. In the discussion this model was compared with the stress process model (SPM). This comparison highlighted striking similarities between the themes in the nurses’ model of carer stress and the theoretical constructs of the SPM. However, the SPM describes influential links between different constructs which were absent in the nurses’ model. The research illustrates developmental training needs for mental health nursing to improve the efficacy of assessments and therefore, interventions.
Davis, L. (2001). Assessing functional ability in persons with dementia: Using family caregivers as informants. Journal of Neuroscience Nursing, 33 (4), 194-202.
More than one in five community-dwelling older individuals is unwilling or unable to provide information on functional abilities. In such situations the standard procedure is to augment self-reports with those of family members or other close informants. However, when these reports differ, it often is difficult to determine whether the older individual is overly optimistic about his or her functional abilities or the family informant is unduly pessimistic. This article explores factors that influence family caregiver assessments of functional abilities in older individuals with some degree of cognitive loss or impairment and presents suggestions for enhancing the accuracy and dependability of functional assessments by family informants.
Etten, M. & Kosberg, J. (1989). The hospice caregiver assessment: A study of a case management tool for professional assistance. The Gerontologist, 29 (1), 128-131.
A Hospice Caregiver Assessment Inventory was developed to identify the problems of those caring for dying patients. A corresponding Caregiver Intervention Plan was developed from the inventory data and utilized by agency professionals. Findings revealed the problems of caregivers of dying older persons and suggested that they often need counseling and assistance prior to the death of their loved one, as well as following death.
Family Caregiver Alliance (2006). Caregiver Assessment: Principles, Guidelines and Strategies for Change. Report from a National Consensus Development Conference (Vol. I). San Francisco: Author. (caregiver assessment volume 1.pdf)
This report arises from an invigorating landmark event: The National Consensus Development Conference for Caregiver Assessment. The National Center on Caregiving at Family Caregiver Alliance (FCA) convened this forum to fill a major gap in policy and practice. A large and growing body of research shows that family members who provide care to persons with chronic or disabling conditions are themselves at risk for physical, emotional and financial problems. Systematic assessment of people with chronic or disabling conditions now occurs routinely in medical, health and social service settings. However, assessment of family caregivers’ needs is rare.
Thus, we invited leaders and stakeholders to a working conference to advance policy and practice on behalf of family caregivers. From September 7-9, 2005 in San Francisco, 54 recognized experts in caregiving, health and long-term care issuesscholars, practitioners and public officialsdeliberated intensively about caregiver assessment. They brought balanced, objective and knowledgeable attention to the issue. We hoped to reach consensus on principles and guidelines for caregiver assessment while building common ground among leaders in the field. We exceeded our expectations.
Volume I, Caregiver Assessment: Principles, Guidelines and Strategies for Change, reflects the professional consensus achieved at this conference: the importance to policy and practice of systematically assessing a caregiver’s own needs in health care and in home and community settings; fundamental principles and practice guidelines for caregiver assessment applicable to a range of practitioners in a variety of settings; and strategies and actions to advance caregiver assessment as a basic component of practice.
Volume II, Caregiver Assessment: Voices and Views from the Field, provides four background papers and two personal accounts. Together they portray key issues in caregiver assessment and illustrate the impact of caregiving at home on the family members who provide the care and support. Both volumes are available online at www.caregiver.org, or as printed reports, available from Family Caregiver Alliance.
Embracing a family-centered perspective requires a fundamental change of thinking in policy and practice. Looking ahead, we hope this report fosters the adoption of the consensus principles and guidelines and serves as a catalyst to strengthen America’s caregiving families.
Family Caregiver Alliance (2006). Caregiver Assessment: Voices and Views from the Field. Report from a National Consensus Development Conference (Vol. II). San Francisco: Author.
See description above for Vol. 1.
Fancey, P., Keefe, J. & Robertson, M.L. (1999). Development of Screening and Assessment Tools for Family Caregivers – Phase I Report on Review of Non-Validated Tools – Nova Scotia Site. Ottawa, Canada: Health Transition Fund of Health Canada.
International review of 57 articles and reports focussing on caregiver assessment tools.
Feinberg, L.F. (2004). The State of the Art: Caregiver Assessment in Practice Settings. San Francisco, CA: Family Caregiver Alliance.
This monograph summarizes the history and background of caregiver assessment; considers the reasons for assessing family care; discusses what, whom, when and where to assess; illustrates areas to assess; highlights examples of existing tools; explores commonalities as well as differences in caregiver assessment instruments; points out areas of caregiver assessment that have been neglected; identifies best practice criteria to consider in designing and implementing assessments; and discusses training issues for practitioners.
Feinberg, L.F., Newman, S., Gray, L., Kolb, K. & Fox-Grage, W. (2004). The State of the States in Family Caregiver Support: A 50-State Study. San Francisco, CA: Family Caregiver Alliance.
This report focuses attention on a growing issue facing the nation: how to support and sustain those who are the cornerstone of our long-term care systemthe dedicated families and informal caregivers of older people and adults with disabilities.
This 50-state study is the first to examine publicly funded caregiver support programs throughout the country. It focuses on caregiver support provided through the Older Americans Act’s National Family Caregiver Support Program (NFCSP), Aged/Disabled Medicaid waiver programs, and state-funded programs.
The report identifies key findings, describes state approaches to providing caregiver support services, offers state-by-state profiles, pinpoints needs and challenges, and expands recognition of family caregiver needs as distinct from the needs of care receivers (i.e., older people and adults with disabilities). The report also identifies emerging themes and the relationship of caregiver support to other home and community-based programs.
Through this first nationwide study of caregiver support services in the U.S., we hope to:
- inform policy discussions among federal and state leaders in caregiving and long-term care throughout the nation; and
- advance the public debate about the explicit provision of family support within the context of long-term care systems development.
This report builds on in-depth case studies of ten states’ caregiver support programs undertaken by FCA’s National Center on Caregiving in 2002 with funding from the U.S. Administration on Aging. As such, it is designed to serve as a reference point for examining future progress and anticipating emerging issues that are likely to shape the future.
Feinberg, L.F., & Newman, S. (2002). Family Caregiver Support: Policies, Perceptions, and Practices in 10 States Since the Passage of the National Family Caregiver Support Program. San Francisco, CA: Family Caregiver Alliance.
This report summarizes the preliminary experiences of 10 states grappling with a growing issue facing the nation: how to support and sustain those who are the backbone of our long-term care system, family and informal caregivers of the elderly and adults with disabilities. We hope this report will broaden the perspective of policymakers and program administrators at the federal, state and local levels to:
- Advance the public debate about the explicit provision of family support within the context of long-term care systems development
- Increase understanding of ways to use public funds strategically to support family and informal caregivers
- Assist the aging network to implement the evolving National Family Caregiver Support Program more effectively
- Serve as a reference point for future progress
- Better anticipate emerging issues that are likely to shape the future
This report is a starting point. As states continue to struggle with budget shortfalls, reign in longterm care expenditures and address the mandate of the Supreme Court’s Olmstead decision, it is our hope that policymakers, program administrators and advocates will learn from these 10 states, which offer an array of approaches and structures. In the end, we hope thatin every statewe will be better able to identify and respond to families in need.
Feinberg, L.F., Wolkwitz, K. & Goldstein, C. (2006). Ahead of the Curve: Emerging Trends and Practices in Family Caregiver Support. Washington, DC: AARP Public Policy Institute.
There is no doubt about it. More and more long-term care is provided at home and in the community rather than in nursing homes. Millions of family caregivers make this possible each day. Against the backdrop of growing numbers of people with disabilities needing long-term services and the fiscal constraints of federal and state governments, reliance on family and other informal caregivers is growing. As a result, caregiver programs are increasingly important in sustaining and strengthening our nation’s unpaid caregivers.
Caregiver programs and supports are located in every state in the nation. Some of these programs and supportive services have been in existence for decades, but most are relatively new or are newly expanded, thanks in part to federal funding from the National Family Caregiver Support Program, enacted in 2000.
This paper highlights three “cutting-edge” trends in supporting family caregivers: assessment of caregivers’ own needs; consumer direction in family caregiver support services; and collaborations on caregiving between the aging network and health care providers. The purpose of the paper is to provide policymakers, program administrators, and advocates with an overview of these emerging trends; describe state approaches and developing practices; and identify key factors fundamental to successful adoption of these strategies. Innovation in many states is clearly afoot. This report shines a light on three of these innovations, focusing on what works, why it is important, and what is possible. We hope the ideas put forth in this report stimulate continued development of supports for persons who are the linchpins of our country’s long-term care system: family and other informal caregivers.
Goetschius, S. (2001). Caring for families: The other patient in palliative care. In M. Matzo & D. Sherman (Eds.), Palliative Care Nursing: Quality Care to the End of Life (245-274), New York, NY: Springer Publishing.
This chapter examines interventions and suggestions for palliative care for families in a variety of settings and along the continuum of care that adults may transverse as they approach the end of life.
Guberman, N., Keefe, J., Fancey, P., Nahmiash, & Barylak, L. (2001). Development of Screening and Assessment Tools for Family Caregivers. Ottawa, Canada: Health Transition Fund of Health Canada.
The goal of the present project was to develop appropriate instruments for assessing and evaluating the specific needs of family caregivers which take into account their reality and conditions and which situate them as essential partners with the formal system in the care of dependent adults.
This project’s specific objectives were:
1) to develop a screening and an assessment tool for assessing the context, the conditions and the needs of family caregivers;
2) to test and evaluate these tools in CLSCs in Quebec and in home care agencies in Nova Scotia.
The primary audience for this project is composed of policy-makers, administrators and practitioners in home care and more widely in front-line care. Our secondary audience includes caregivers, academics, training institutions and the general public.
Guberman, N., Nicholas, E., Nolan, M., Rembicki, Lundh, U., & Keefe, J. (2003). Impacts on practitioners of using research-based carer assessment tools: Experiences from the UK, Canada and Sweden, with insights from Australia. Health and Social Care in the Community, 11 (4), 345-355.
Researchers and practitioners in several Western countries have recently developed tools for assessing the situation of the carers of adults who are ill, elderly or have disabilities. The present article describes the impact of three such assessment tools, from Canada, the UK and Sweden, on the professional practice of assessors. All tools were tested in agency-based studies. Focus groups, workshops and interviews with assessors were employed to understand the impact on professionals and their practice. An Australian researcher and case manager comments on these experiences from her unique perspective. The results reveal that the use of carer assessments can lead to changes in the appropriateness of intervention by informing practitioners of issues which are given little attention, but which impact on the adequacy of interventions to the service user. Across the projects, most workers found that the tools facilitated a more comprehensive, in-depth and carer-focused assessment. Experience across all the projects suggests that, used sensitively, such tools and approaches can play a key role in transforming the relationship between carers, and the health and social care system. Giving carers a legitimate voice, acknowledging their perspective and expertise, and making them central to assessment processes accords them status both as active partners, and as individuals with their own needs and aspirations, rather than seeing them primarily as resources. As a result of their experiences, many workers and administrators concluded that home-care programmes must change their mandate to include carers among their clients, raising the issue of available monetary and human resources to meet the needs of this group. In addition, as our Australian colleague points out, time, efficiency, relevance, benefit and minimal intrusiveness are important factors for practitioners which influence their use of assessment tools.
Kaye, L., Turner, W., Butler, S., Downey, R. & Cotton, A. (2003). Early intervention screening for family caregivers of older relatives in primary care practices – Establishing a community health service alliance in rural America. Family and Community Health, 26 (4), 319-328.
The Maine Primary Partners in Caregiving project provides a prime example of how disparate community health, social service, and higher education institutions can build a successful rural service alliance for the purposes of screening for family members experiencing stress during the provision of care to impaired older relatives. Community primary care practices are featured as prime sites for the early identification of elder caregivers experiencing stress and burden. Initial project results and implementation challenges as well as recommended strategies for nurturing such community partnerships are presented.
Meilillo, K. & Futrell, M. (1995). A guide for assessing caregiver needs: Determining a health history database for family caregivers. Nurse Practitioner, 20 (5), 40-46.
The complex issue of combining caregiving and employment requires an awareness on the part of primary care providers of the health and social impact these responsibilities have on clients. Failure to consider the psychosocial and health-related consequences of caregiving for individuals with dual roles could result in greater health care costs, jeopardize the health of the caregiver, and place the care recipient at risk of institutionalization. The purpose of this article is to offer a guide that can be used as part of a comprehensive health history to assess the caregiving situation and provide a database on which to establish a plan of action. The caregiver assessment guide can be inserted in the client’s health record and periodically reviewed during primary care visits.
Montgomery, A. & Feinberg, L.F. (2003). The Road to Recognition: International Review of Public Policies to Support Family and Informal Caregiving. Issue Brief. San Francisco, CA: Family Caregiver Alliance.
This policy brief highlights where family caregivers now stand in relation to public policies for long-term care. The six countries reviewed (Australia, Canada, Germany, Japan, United Kingdom and the United States) represent diverse philosophies and policies with regard to supporting and sustaining family care of frail elders and persons with disabilities. Also discussed are caregiver assessment, employment leave law and certain tax law provisions. This approach is intended to illuminate where formal and informal systems of long-term care and caregiver support intersect, and where gaps and limitations remain.
Nankervis, J., Schofield, H., Herman, H. & Bloch, S. (1997). Homebased assessment for family carers: A preventative strategy to identify and meet service needs. International Journal of Geriatric Psychiatry, 12, 193-201.
OBJECTIVE: To identify unmet need for services among family carers and their frail or disabled relatives and to facilitate links to services. DESIGN: Intervention study with a subgroup of carer dyads from a random statewide survey of family carers, followed by telephone 2 months post intervention. SETTING: Carer dyads in general community; urban and rural Victoria. PARTICIPANTS: All 186 identified carers were approached. One-third of the dyads were ineligible; of the remainder, 67 (53%) participated, matching refusals on sociodemographic characteristics. Carers were typically married, middle-aged women looking after parents or spouses. Almost half of the care recipients were aged > or = 80; most had multiple disorders and impairments. Follow-up rate was 94%. INTERVENTION: One off, multidisciplinary home-based assessment of dyad by research team and regional aged care assessment service (ACAT). MAIN OUTCOME MEASURES: “Unmet need’: % dyads recommended new services; number services per dyad via ACAT; increases in service range; extension of pre-existing services. Service linkage: % dyads linked to new services; perceived usefulness of linkages. MAIN RESULTS: Dyads recommended a new service (93%); increased range (73%); extensions (41%). Average two services requiring ACAT implementation; commonly respite care, aids and paramedical services. Recommendations related to impairment severity and carer stress. ACAT implemented recommendations (90% relevant dyads); links rated useful (75% relevant dyads). Three-quarters of the carers rated intervention as helpful. CONCLUSION: A preventative programme of needs assessment for carer dyads has considerable potential; (a) identifying needs and engaging new services; (b) providing emotional support.
New Zealand Guidelines Group (2003). Assessment Processes for Older People. Wellington, New Zealand: Author.
This guideline outlines the necessary elements of effective assessment processes for older people in New Zealand. It is intended to inform and guide funding agencies, such as the Ministry of Health, District Health Boards (DHBs) and ACC; service providers such as Primary Health Organisations (PHOs); community workers; practitioners from any discipline in primary or secondary health care; and older people and the people who care for them, including family and unpaid carers.
This guideline does not detail the specific measures used for assessments within domains and dimensions of health and well-being. It does not outline what domain-specific procedures (including assessments) should be completed following referral to a particular service, nor does it provide guidelines for interventions and follow-up. Domain or condition-specific evidence-based practice guidelines such as guidelines for Elder Abuse (under development); Hip Fracture and Falls Prevention; Support and Management of People with Dementia may be used to complement this guideline.
The guideline, while detailing the most effective processes around assessment of older people, is not intended to do more than inform development of service frameworks and does not extend to a detailed analysis of the most effective service configurations to support the recommended assessment processes. The section on implementation is similarly intended as a broad conceptual guide. This edition does not specifically address the needs of all minority populations within New Zealand and this may be considered in future reviews.
Nicholas, E. (2003). An outcomes focus in carer assessment and review: Value and challenge. British Journal of Social Work, 33, 31-47.
A focus on outcomes and a desire to improve assessment and support to carers are central to government policy, crystallized in the 2000 Carers and Disabled Children Act. This paper explores the benefits and challenges of implementing an outcomes approach to carer assessment and review, highlighted by a research and development project, undertaken in partnership with one local authority. The project developed and tested research-based practice tools which aimed to promote carer-centred practice, together with clarity in communication and recording of outcomes intended and achieved. Findings indicated that practice could be enhanced with the help of a clear conceptual framework and tools, flexibly and sensitively used to assist discussion and decision-making with carers about outcomes. Information about outcomes, aggregated from individual records, was perceived as potentially useful for informing service development. Some significant obstacles and challenges also emerged; not least, the subtle but significant culture shift required, and the additional time needed to effectively identify and address outcomes with carers. A number of factors were highlighted as important in introducing such an approach: collaboration with, and between, all stakeholders; training and support for practitioners to include practice in recording outcomes, and opportunities for continuing discussion and reflection during implementation.
Wright, L. & Leahey, M. (2005). Nurses and Families – A Guide to Family Assessment and Intervention. Fourth Ed. Philadelphia, PA: F.A. Davis Company.
This text provides specific how-to guidelines for family assessment and intervention. The major purposes of the book are to: (1) provide nurses with a sound theoretical foundation for family assessment and intervention; (2) provide nurses with clear, concise, and comprehensive family assessment and intervention models; (3) provide guidelines for family interviewing skills; (4) offer detailed ideas and suggestions with clinical examples of how to prepare, conduct, document, and terminate family interviews; (5) provide nurses with an appreciation of the powerful influence of nurse-family collaboration to diminish, reduce, or alleviate illness suffering.
REVIEW OF CAREGIVER ASSESSMENT INSTRUMENTS
Reviews of Caregiver Measures
Deeken, J., Taylor, K., Mangan, P., Yabroff, R., & Ingham, J. (2003). Care for the caregivers: A review of self-report instruments developed to measure the burden, needs, and quality of life of informal caregivers. Journal of Pain and Symptom Management, 26 (4), 922-953.
Family Caregiver Alliance (2002). Selected Caregiver Assessment Measures: A Resource Inventory for Practitioners. San Francisco, CA: Author.
Gaugler, J., Kane, R., & Langlois, J. (2000). Assessment of family caregivers of older adults. In R. Kane & R. Kane (Eds.), Assessing Older Persons – Measures, Meaning and Practical Applications (320-359). New York, NY: Oxford University Press.