Skip to main content

Advertisement

Log in

Measuring the impact of informal elderly caregiving: a systematic review of tools

  • Review
  • Published:
Quality of Life Research Aims and scope Submit manuscript

Abstract

Purpose

To classify and identify the main characteristics of the tools used in practice to assess the impact of elderly caregiving on the informal carers’ life.

Methods

A systematic review of literature was performed searching in Embase, MEDLINE, PsycINFO, CINAHL, IBECS, LILACS, SiiS, SSCI and Cochrane Library from 2009 to 2013 in English, Spanish, Portuguese and French, and in reference lists of included papers.

Results

The review included 79 studies, among them several in languages other than English. Their inclusion increased the variety of identified tools to measure this impact (n = 93) and allowed a wider analysis of their geographical use. While confirming their overlapping nature, instruments were classified according to the degree of integration of dimensions they evaluated and their specificity to the caregiving process: caregiver burden (n = 20), quality of life and well-being (n = 11), management and coping (n = 21), emotional and mental health (n = 29), psychosocial impact (n = 10), physical health and healthy habits (n = 2), and other measures. A high use in practice of tools not validated yet and not caregiver-specific was identified.

Conclusions

The great variety and characteristics of instruments identified in this review confirm the complexity and multidimensionality of the effects of elderly caregiving on the informal carer’s life and explain the difficulties to assess these effects in practice. According to the classification provided, caregiver burden and emotional and mental health are the most evaluated dimensions. However, further work is required to develop integrated and caregiving focused procedures that can appraise this complexity across different countries and cultures.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Subscribe and save

Springer+ Basic
EUR 32.99 /Month
  • Get 10 units per month
  • Download Article/Chapter or Ebook
  • 1 Unit = 1 Article or 1 Chapter
  • Cancel anytime
Subscribe now

Buy Now

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Fig. 1
Fig. 2

Similar content being viewed by others

References

  1. Kinsella, K., & Wan, H. (2009). An aging world 2008. Washington, DC: U.S. Census Bureau, U.S. Government Printing Office. International population reports P95/09-1.

  2. World Health Organization. (2012). Good health adds life to years. Global brief for World Health Day 2012. Geneva: WHO Document Production Services.

    Google Scholar 

  3. Di Novi, C., Jacobs, R., & Migheli, M. (2013). The quality of life of female informal caregivers: From Scandinavia to the Mediterranean Sea. York: Centre for Health Economics, University of York. CHE research paper 84.

  4. Hoffmann, F., & Rodrigues, R. (2010). Informal carers: Who takes care of them? Vienna: European Centre for Social Welfare Policy and Research. Policy Briefs.

  5. European Foundation for the Improvement of Living and Working Conditions. (2004). Health and care in an enlarged Europe. Quality of life in Europe. Dublin, Ireland.

  6. Durán, M. A. (2012). El trabajo no remunerado en la economía global. Bilbao: Fundación BBVA.

    Google Scholar 

  7. OECD. (2013). Health at a glance 2013. OECD indicators. Paris: OECD Publishing.

    Google Scholar 

  8. Michel, J. P., Robine, J. M., & Herrmann, F. (2010). Demain, qui va prendre soin des personnes âgées? Le taux de soutien aux très âgés. Bulletin de l’Académie Nationale de Médecine, 194, 793–801.

    PubMed  Google Scholar 

  9. Yeh, P. M., & Bull, M. (2012). Use of the resiliency model of family stress, adjustment and adaptation in the analysis of family caregiver reaction among families of older people with congestive heart failure. International Journal of Older People Nursing, 7, 117–126.

    Article  PubMed  Google Scholar 

  10. Sequeira, C. (2013). Difficulties, coping strategies, satisfaction and burden in informal Portuguese caregivers. Journal of Clinical Nursing, 22, 491–500.

    Article  PubMed  Google Scholar 

  11. Navarro-Peternella, F., & Marcon, S. (2010). A convivência com a doença de Parkinson na perspectiva do parkinsoniano e seus familiares. Revista Gaúcha de Enfermagem, 31, 415–422.

    Article  PubMed  Google Scholar 

  12. Gratão, A. C. M., do Vale, Fd A C, Roriz-Cruz, M., Haas, V. J., Lange, C., Talmelli, L Fd S, & Rodrigues, R. A. P. (2010). The demands of family caregivers of elderly individuals with dementia. Revista da Escola de Enfermagem da USP, 44, 873–880.

    Article  Google Scholar 

  13. Floriano, L. A., Azevedo, R. C. d S., Reiners, A. A. O., & Sudre, M. R. S. (2012). Care performed by family caregivers to dependent elderly, at home, within the context of the Family Health Strategy. Texto Context Nursing, 21, 543–548.

    Article  Google Scholar 

  14. de Oliveira, A. P. P., & Caldana, R. H. L. (2012). As repercussões do cuidado na vida do cuidador familiar de idoso com demência de Alzheimer. Saúde e Sociedade, 21, 675–685.

    Article  Google Scholar 

  15. Camargo, R C V Fd. (2010). Implicações na saúde mental de cuidadores de idosos: Uma necessidade urgente de apoio formal. SMAD, Revista Eletrônica Saúde Mental Alcool e Drogas, 6, 231–254.

    Article  Google Scholar 

  16. González-Valentín, A., & Gálvez-Romero, C. (2009). Características sociodemográficas, de salud y utilización de recursos sanitarios de cuidadores de ancianos atendidos en domicilio. Gerokomos, 20, 15–21.

    Article  Google Scholar 

  17. Carretero, S., Garcés, J., & Ródenas, F. (2011). Evaluation of the home help service and its impact on the informal caregiver’s burden of dependent elders. In J. Garcés, S. Carretero, & F. Ródenas (Eds.), Readings of the social sustainability theory. Applications to the long-term care field (pp. 119–144). Valencia: Editorial Tirant lo Blanch.

    Google Scholar 

  18. Gratão, A. C. M., Vendrúscolo, T. R. P., Talmelli, L Fd S, Figueiredo, L. C., Santos, J. L. F., & Rodrigues, R. A. P. (2012). Sobrecarga e desconforto emocional em cuidadores de idosos. Texto & Contexto Enfermagem, 21, 304–312.

    Article  Google Scholar 

  19. Silva, M., Monteiro, L., Silva, A., & Ferriera, M. (2012). Estudo das necessidades dos cuidadores informais de idosos do concelho de Ílhavo. Nursing: Revista de Formação Contínua em Enfermagem, 24, 5–11.

    Google Scholar 

  20. Fernandes, M. d G. M., & Garcia, T. R. (2009). Tension attributes of the family caregiver of frail older adults. Revista da Escola de Enfermagem da USP, 43, 818–824.

    Article  Google Scholar 

  21. Pereira, M Jd S B, & Filgueiras, M. S. T. (2009). A dependência no processo de envelhecimiento: Uma revisão sobre cuidadores informais de idosos. Revista de Atenção Primária à Saúde, 12, 72–82.

    Google Scholar 

  22. Shaw, C., McNamara, R., Abrams, K., Cannings-John, R., Hood, K., Longo, M., et al. (2009). Systematic review of respite care in the frail elderly. Health Technology Assessment, 13, 1–224.

    Article  CAS  PubMed  Google Scholar 

  23. Gonçalves, L. H. T., Costa, M. A. M., Martins, M. M., Nassar, S. M., & Zunino, R. (2011). The family dynamics of elder elderly in the context of Porto, Portugal. Revista Latino-Americana de Enfermagem, 19, 458–466.

    Article  Google Scholar 

  24. Cuéllar Flores, I., & Sánchez López, M. P. (2012). Adaptación psicológica en personas cuidadoras de familiares dependientes. Clínica y Salud, 23, 141–152.

    Article  Google Scholar 

  25. Neri, A. L., Yassuda, M. S., Fortes-Burgos, A. C., Mantovani, E. P., Arbex, F. S., De Souza Torres, S. V., et al. (2012). Relationships between gender, age, family conditions, physical and mental health, and social isolation of elderly caregivers. International Psychogeriatrics, 24, 472–483.

    Article  PubMed  Google Scholar 

  26. Limpawattana, P., Theeranut, A., Chindaprasirt, J., Sawanyawisuth, K., & Pimporm, J. (2013). Caregivers burden of older adults with chronic illnesses in the community: A cross-sectional study. Journal of Community Health, 38, 40–45.

    Article  PubMed  Google Scholar 

  27. Pimenta, G. M. F., Costa, M. A. S., Goncalves, L. H. T., & Alvarez, A. M. (2009). Profile of the caregiver of dependent elderly family members in a home environment in the city of Porto, Portugal. Revista da Escola de Enfermagem da USP, 43, 609–614.

    Article  Google Scholar 

  28. Liu, Z. R., Albanese, E., Li, S. R., Huang, Y. Q., Ferri, C. P., Yan, F., et al. (2009) Chronic disease prevalence and care among the elderly in urban and rural Beijing, China—A 10/66 Dementia Research Group cross-sectional survey. BMC Public Health, 9, 394.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  29. Uwakwe, R., Ibeh, C. C., Modebe, A. I., Bo, E., Ezeama, N., Njelita, I., et al. (2009). The epidemiology of dependence in older people in Nigeria: Prevalence, determinants, informal care, and health service utilization. A 10/66 Dementia Research Group cross-sectional survey. Journal of the American Geriatrics Society, 57, 1620–1627.

    Article  PubMed  Google Scholar 

  30. Ferri, C. P., Schoenborn, C., Kalra, L., Acosta, D., Guerra, M., Huang, Y. Q., et al. (2011). Prevalence of stroke and related burden among older people living in Latin America, India and China. Journal of Neurology, Neurosurgery and Psychiatry, 82, 1074–1082.

    Article  PubMed  PubMed Central  Google Scholar 

  31. Moya-Martinez, P., Escribano-Sotos, F., & Pardo-Garcia, I. (2012). La participación en el mercado laboral de los cuidadores informales de personas mayores en España. Innovar-Revista de Ciencias Administrativas y Sociales, 22, 55–66.

    Google Scholar 

  32. Canga, A., Vivar, C. G., & Naval, C. (2011). Dependencia y familia cuidadora: Reflexiones para un abordaje familiar. Anales del Sistema Sanitario de Navarra, 34, 463–469.

    Article  Google Scholar 

  33. Deeken, J. F., Taylor, K. L., Mangan, P., Yabroff, K. R., & Ingham, J. M. (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, 922–953.

    Article  PubMed  Google Scholar 

  34. Van Durme, T., Macq, J., Jeanmart, C., & Gobert, M. (2012). Tools for measuring the impact of informal caregiving of the elderly: A literature review. International Journal of Nursing Studies, 49, 490–504.

    Article  PubMed  Google Scholar 

  35. IMSERSO. (2005). Libro Blanco. Atención a las personas en situación de dependencia en España (1st ed.). Madrid: Instituto de Mayores y Servicios Sociales (IMSERSO).

    Google Scholar 

  36. García Calvente, M. M., & Del Río Lozano, M. (2012) El papel del cuidado informal en la atención a la dependencia: ¿Cuidamos a quiénes nos cuidan? Actas de la dependencia, 6, 99–116.

    Google Scholar 

  37. Ferrans, C. E., Zerwic, J. J., Wilbur, J. E., & Larson, J. L. (2005). Conceptual model of health-related quality of life. Journal of Nursing Scholarship, 37, 336–342.

    Article  PubMed  Google Scholar 

  38. Bakas, T., McLennon, S. M., Carpenter, J. S., Buelow, J. M., Otte, J. L., Hanna, K. M., et al. (2012) Systematic review of health-related quality of life models. Health and Quality of Life Outcomes, 10, 134.

    Article  PubMed  PubMed Central  Google Scholar 

  39. Aaronson, N., Alonso, J., Burnam, A., Lohr, K. N., Patrick, D. L., Perrin, E., & Stein, R. E. (2002). Assessing health status and quality-of-life instruments: Attributes and review criteria. Quality of Life Research, 11, 193–205.

    Article  PubMed  Google Scholar 

  40. Fernandes, Md G M, & Garcia, T. R. (2009). Estrutura conceitual da tensão do cuidador familiar de idosos dependentes. Revista Eletrônica de Enfermagem, 11, 469–476.

    Article  Google Scholar 

  41. Pinto, M. F., Barbosa, D. A., Ferreti, C Ed L, de Souza, L. F., Fram, D. S., & Belasco, A. G. S. (2009). Qualidade de vida de cuidadores de idosos com doença de Alzheimer. Acta Paulista de Enfermagem, 22, 652–657.

    Article  Google Scholar 

  42. Salin, S., Kaunonen, M., & Astedt-Kurki, P. (2009). Informal carers of older family members: How they manage and what support they receive from respite care. Journal of Clinical Nursing, 18, 492–501.

    Article  PubMed  Google Scholar 

  43. Clark, M. C., & Diamond, P. M. (2010). Depression in family caregivers of elders: A theoretical model of caregiver burden, sociotropy, and autonomy. Research in Nursing & Health, 33, 20–34.

    Google Scholar 

  44. Garlo, K., O’Leary, J. R., Van Ness, P. H., & Fried, T. R. (2010). Burden in caregivers of older adults with advanced illness. Journal of the American Geriatrics Society, 58, 2315–2322.

    Article  PubMed  PubMed Central  Google Scholar 

  45. García-Alberca, J. M., Lara, J. P., & Berthier, M. L. (2011). Anxiety and depression in caregivers are associated with patient and caregiver characteristics in Alzheimer’s disease. The International Journal of Psychiatry in Medicine, 41, 57–69.

    Article  PubMed  Google Scholar 

  46. Guerra-Silla, M. G., Gutiérrez-Robledo, L. M., Villalpando-Berumen, J. M., Pérez-Zepeda, M. U., Montaña-Álvarez, M., Reyes-Guerrero, J., & Rosas-Carrasco, Ó. (2011). Psychometric evaluation of a Spanish language version of the Screen for Caregiver Burden (SCB) in caregivers of patients with mixed, vascular and Alzheimer’s dementia. Journal of Clinical Nursing, 20, 3443–3451.

    Article  PubMed  Google Scholar 

  47. Kuzuya, M., Enoki, H., Hasegawa, J., Izawa, S., Hirakawa, Y., Shimokata, H., & Akihisa, I. (2011). Impact of caregiver burden on adverse health outcomes in community-dwelling dependent older care recipients. The American Journal of Geriatric Psychiatry, 19, 382–391.

    Article  PubMed  Google Scholar 

  48. Casado, B., & Sacco, P. (2012). Correlates of caregiver burden among family caregivers of older Korean Americans. The Journals of Gerontology, Series B: Psychological Sciences and Social Sciences, 67, 331–336.

    Article  Google Scholar 

  49. Werner, S., Auslander, G. K., Shoval, N., Gitlitz, T., Landau, R., & Heinik, J. (2012). Caregiving burden and out-of-home mobility of cognitively impaired care-recipients based on GPS tracking. International Psychogeriatrics, 24, 1836–1845.

    Article  PubMed  Google Scholar 

  50. Conde-Sala, J. L., Garre-Olmo, J., Turro-Garriga, O., Lopez-Pousa, S., & Vilalta-Franch, J. (2009). Factors related to perceived quality of life in patients with Alzheimer’s disease: The patient’s perception compared with that of caregivers. International Journal of Geriatric Psychiatry, 24, 585–594.

    Article  PubMed  Google Scholar 

  51. Machnicki, G., Allegri, R. F., Dillon, C., Serrano, C. M., & Taragano, F. E. (2009). Cognitive, functional and behavioral factors associated with the burden of caring for geriatric patients with cognitive impairment or depression: Evidence from a South American sample. International Journal of Geriatric Psychiatry, 24, 382–389.

    Article  PubMed  Google Scholar 

  52. Losada, A., Pérez-Peñaranda, A., Rodriguez-Sanchez, E., Gomez-Marcos, M. A., Ballesteros-Rios, C., Ramos-Carrera, I. R., et al. (2010). Leisure and distress in caregivers for elderly patients. Archives of Gerontology and Geriatrics, 50, 347–350.

    Article  PubMed  Google Scholar 

  53. Mohamed, S., Rosenheck, R., Lyketsos, C. G., & Schneider, L. S. (2010). Caregiver burden in Alzheimer disease: Cross-sectional and longitudinal patient correlates. The American Journal of Geriatric Psychiatry, 18, 917–927.

    Article  PubMed  PubMed Central  Google Scholar 

  54. Canonici, A. P., Andrade, L. P., Gobbi, S., Santos-Galduroz, R. F., Gobbi, L. T., & Stella, F. (2012). Functional dependence and caregiver burden in Alzheimer’s disease: A controlled trial on the benefits of motor intervention. Psychogeriatrics, 12, 186–192.

    Article  PubMed  Google Scholar 

  55. Clark, M. C., Nicholas, J. M., Wassira, L. N., & Gutierrez, A. P. (2013). Psychosocial and biological indicators of depression in the caregiving population. Biological Research for Nursing, 15, 112–121.

    Article  PubMed  Google Scholar 

  56. Izawa, S., Hasegawa, J., Enoki, H., Iguch, A., & Kuzuya, M. (2010). Depressive symptoms of informal caregivers are associated with those of community-dwelling dependent care recipients. International Psychogeriatrics, 22, 1310–1317.

    Article  PubMed  Google Scholar 

  57. Turró-Garriga, O., López-Pousa, S., Vilalta-Franch, J., Turon-Estrada, A., Pericot-Nierga, I., Lozano-Gallego, M., et al. (2010). Valor económico anual de la asistencia informal en la enfermedad de Alzheimer. Revista de Neurología, 51, 201–207.

    PubMed  Google Scholar 

  58. Uesugui, H. M., Fagundes, D. S., & Pinho, D. L. M. (2011). Profile and degree of dependency of the elderly and overload of their caregivers. Acta Paulista de Enfermagem, 24, 689–694.

    Google Scholar 

  59. Gratão, A. C. M., Talmelli, L. F. D., Figueiredo, L. C., Rosset, I., Freitas, C. P., & Rodrigues, R. A. P. (2013). Functional dependency of older individuals and caregiver burden. Revista da Escola de Enfermagem da USP, 47, 134–141.

    Article  Google Scholar 

  60. Garcés, J., Carretero, S., Rodenas, F., & Sanjosé, V. (2009). Variables related to the informal caregivers’ burden of dependent senior citizens in Spain. Archives of Gerontology and Geriatrics, 48, 372–379.

    Article  PubMed  Google Scholar 

  61. Martín-Carrasco, M., Franco Martín, M., Pelegrín Valero, C., Roy Millan, P., Iglesias García, C., Ros Montalbán, S., et al. (2009). Effectiveness of a psychoeducational intervention program in the reduction of caregiver burden in Alzheimer’s disease patients’ caregivers. International Journal of Geriatric Psychiatry, 24, 489–499.

    Article  PubMed  Google Scholar 

  62. Orueta-Sánchez, R., Gómez-Calcerrada, R. M., Gómez-Caro, S., Sánchez-Oropesa, A., López-Gil, M. J., & Toledano-Sierra, P. (2011). Impacto sobre el cuidador principal de una intervencion realizada a personas mayores dependientes. Atención Primaria, 43, 490–496.

    Article  PubMed  Google Scholar 

  63. Tremont, G., Davis, J., Papandonatos, G. D., Grover, C., Ott, B. R., Fortinsky, R. H., et al. (2013). A telephone intervention for dementia caregivers: Background, design, and baseline characteristics. Contemporary Clinical Trials, 36, 338–347.

    Article  PubMed  Google Scholar 

  64. Fialho, P. P. A., Koenig, A. M., dos Santos, E. L., Guimarães, H. C., Beato, R. G., Carvalho, V. A., et al. (2009). Dementia caregiver burden in a Brazilian sample: Association to neuropsychiatric symptoms. Dementia & Neuropsychologia, 3, 132–135.

    Google Scholar 

  65. Pereira, M. D. G., & Carvalho, H. (2012). Qualidade vida, sobrecarga, suporte social, ajustamento conjugal e morbidade psicológica em cuidadores de idosos com dependência funcional. Temas em Psicologia, 20, 369–383.

    Article  Google Scholar 

  66. Yan, E., & Kwok, T. (2011). Abuse of older Chinese with dementia by family caregivers: An inquiry into the role of caregiver burden. International Journal of Geriatric Psychiatry, 26, 527–535.

    Article  PubMed  Google Scholar 

  67. Burgio, L. D., Collins, I. B., Schmid, B., Wharton, T., McCallum, D., & Decoster, J. (2009). Translating the REACH caregiver intervention for use by area agency on aging personnel: The REACH OUT program. The Gerontologist, 49, 103–116.

    Article  PubMed  PubMed Central  Google Scholar 

  68. Gitlin, L. N., Winter, L., Dennis, M. P., Hodgson, N., & Hauck, W. W. (2010). Targeting and managing behavioral symptoms in individuals with dementia: A randomized trial of a nonpharmacological intervention. Journal of the American Geriatrics Society, 58, 1465–1474.

    Article  PubMed  PubMed Central  Google Scholar 

  69. Black, B. S., Johnston, D., Morrison, A., Rabins, P. V., Lyketsos, C. G., & Samus, Q. M. (2012). Quality of life of community-residing persons with dementia based on self-rated and caregiver-rated measures. Quality of Life Research, 21, 1379–1389.

    Article  PubMed  PubMed Central  Google Scholar 

  70. Rodriguez-Sanchez, E., Patino-Alonso, M. C., Mora-Simón, S., Gómez-Marcos, M. A., Pérez-Peñaranda, A., Losada-Baltar, A., & García-Ortiz, L. (2013). Effects of a psychological intervention in a primary health care center for caregivers of dependent relatives: A randomized trial. The Gerontologist, 53, 397–406.

    Article  PubMed  Google Scholar 

  71. World Health Organization. (1993). Report of WHOQOL focus group work (MNH/PSF/93.4). Geneva: WHO.

  72. Novelli, M. M., Nitrini, R., & Caramelli, P. (2010). Validation of the Brazilian version of the quality of life scale for patients with Alzheimer’s disease and their caregivers (QOL-AD). Aging & Mental Health, 14, 624–631.

    Article  Google Scholar 

  73. Baumann, M., Couffignal, S., Le, B. E., & Chau, N. (2012). Life satisfaction two-years after stroke onset: The effects of gender, sex occupational status, memory function and quality of life among stroke patients (Newsqol) and their family caregivers (Whoqol-bref) in Luxembourg. BMC Neurology, 12, 105.

    Article  PubMed  PubMed Central  Google Scholar 

  74. Inouye, K., Pedrazzani, E. S., Pavarini, S. C., & Toyoda, C. Y. (2009). Perceived quality of life of elderly patients with dementia and family caregivers: Evaluation and correlation. Revista Latino-Americana de Enfermagem, 17, 187–193.

    Article  PubMed  Google Scholar 

  75. Arons, A. M., Krabbe, P. F., Scholzel-Dorenbos, C. J., van der Wilt, G. J., & Rikkert, M. G. (2013). Quality of life in dementia: A study on proxy bias. BMC Medical Research Methodology, 13, 110.

    Article  PubMed  PubMed Central  Google Scholar 

  76. Löckenhoff, C. E., Duberstein, P. R., Friedman, B., & Costa, P. T, Jr. (2011). Five-factor personality traits and subjective health among caregivers: The role of caregiver strain and self-efficacy. Psychology and Aging, 26, 592–604.

    Article  PubMed  PubMed Central  Google Scholar 

  77. Zacher, H., Jimmieson, N. L., & Winter, G. (2011). Eldercare demands, mental health, and work performance: The moderating role of satisfaction with eldercare tasks. Journal of Occupational Health Psychology, 17, 52–64.

    Article  PubMed  Google Scholar 

  78. Gitlin, L. N., Winter, L., Dennis, M. P., Hodgson, N., & Hauck, W. W. (2010). A biobehavioral home-based intervention and the well-being of patients with dementia and their caregivers: The COPE randomized trial. Journal of American Medical Association, 304, 983–991.

    Article  CAS  Google Scholar 

  79. Yeh, P. M., & Bull, M. (2009). Influences of spiritual well-being and coping on mental health of family caregivers for elders. Research in Gerontological Nursing, 2, 173–181.

    Article  PubMed  Google Scholar 

  80. Gottlieb, B. H., & Wolfe, J. (2002). Coping with family caregiving to persons with dementia: A critical review. Aging & Mental Health, 6, 325–342.

    Article  CAS  Google Scholar 

  81. Fredrickson, B. L., & Branigan, C. (2005). Positive emotions broaden the scope of attention and thought-action repertoires. Cognition and Emotion, 19, 313–332.

    Article  PubMed  PubMed Central  Google Scholar 

  82. Barbosa, A., Figueiredo, D., Sousa, L., & Demain, S. (2011). Coping with the caregiving role: Differences between primary and secondary caregivers of dependent elderly people. Aging & Mental Health, 15, 490–499.

    Article  Google Scholar 

  83. Ducharme, F. C., Levesque, L. L., Lachance, L. M., Kergoat, M. J., Legault, A. J., Beaudet, L. M., & Zarit, S. H. (2011). “Learning to become a family caregiver”. Efficacy of an intervention program for caregivers following diagnosis of dementia in a relative. The Gerontologist, 51, 484–494.

    Article  PubMed  Google Scholar 

  84. Chan, S. W. (2010). Family caregiving in dementia: The Asian perspective of a global problem. Dementia and Geriatric Cognitive Disorders, 30, 469–478.

    Article  PubMed  Google Scholar 

  85. World Health Organization. (2001). A public health approach to mental health. In A. Haden & B. Campanini (Eds.), The world health report 2001—Mental health: New understanding, new hope (pp. 2–17). Geneva: WHO.

    Google Scholar 

  86. Masanet, E., & La Parra, D. (2011). Relación entre el número de horas de cuidado informal y el estado de salud mental de las personas cuidadoras. Revista Española de Salud Pública, 85, 257–266.

    Article  PubMed  Google Scholar 

  87. Mackenzie, C. S., Wiprzycka, U. J., Hasher, L., & Goldstein, D. (2009). Associations between psychological distress, learning, and memory in spouse caregivers of older adults. Journal of Gerontology: Psychological Sciences, 64B, 742–746.

    Article  Google Scholar 

  88. Schoenmakers, B., Buntinx, F., & DeLepeleire, J. (2010). Supporting the dementia family caregiver: The effect of home care intervention on general well-being. Aging & Mental Health, 14, 44–56.

    Article  Google Scholar 

  89. Rezende, T. C., Coimbra, A. M., Costallat, L. T., & Coimbra, I. B. (2010). Factors of high impacts on the life of caregivers of disabled elderly. Archives of Gerontology and Geriatrics, 51, 76–80.

    Article  PubMed  Google Scholar 

  90. Pinquart, M., & Sorensen, S. (2011). Spouses, adult children, and children-in-law as caregivers of older adults: A meta-analytic comparison. Psychology and Aging, 26, 1–14.

    Article  PubMed  PubMed Central  Google Scholar 

  91. Meeuwsen, E. J., Melis, R. J., Van Der Aa, G. C., Goluke-Willemse, G. A., De Leest, B. J., Van Raak, F. H., et al. (2012). Effectiveness of dementia follow-up care by memory clinics or general practitioners: Randomised controlled trial. BMJ, 344, e3086.

    Article  PubMed  PubMed Central  Google Scholar 

  92. Losada, A., Márquez-González, M., & Romero-Moreno, R. (2011). Mechanisms of action of a psychological intervention for dementia caregivers: Effects of behavioral activation and modification of dysfunctional thoughts. International Journal of Geriatric Psychiatry, 26, 1119–1127.

    PubMed  Google Scholar 

  93. Martikainen, P., Bartley, M., & Lahelma, E. (2002). Psychosocial determinants of health in social epidemiology. International Journal of Epidemiology, 31, 1091–1093.

    Article  PubMed  Google Scholar 

  94. Salgueiro, H., & Lopes, M. (2010). A dinâmica da família que coabita e cuida de um idoso dependente. Revista Gaúcha de Enfermagem, 31, 26–32.

    Article  PubMed  Google Scholar 

  95. Germain, S., Adam, S., Olivier, C., Cash, H., Ousset, P. J., Andrieu, S., et al. (2009). Does cognitive impairment influence burden in caregivers of patients with Alzheimer’s disease? Journal of Alzheimer’s Disease, 17, 105–114.

    PubMed  Google Scholar 

  96. Akpinar, B., Küçükgüçlü, O., & Yener, G. (2011). Effects of gender on burden among caregivers of Alzheimer’s patients. Journal of Nursing Scholarship, 43, 248–254.

    PubMed  Google Scholar 

  97. Di Rosa, M., Melchiorre, M. G., Lucchetti, M., & Lamura, G. (2012). The impact of migrant work in the elder care sector: Recent trends and empirical evidence in Italy. European Journal of Social Work, 15, 9–27.

    Article  Google Scholar 

  98. Kim, H., Chang, M., Rose, K., & Kim, S. (2012). Predictors of caregiver burden in caregivers of individuals with dementia. Journal of Advanced Nursing, 68, 846–855.

    Article  PubMed  Google Scholar 

  99. Li, H., Zhang, H. H., Huang, H., Wang, Y. Z., & Huang, H. L. (2012). Caring burden and associated factors of care providers for senile dementia patients in an urban–rural fringe of Fuzhou City, China. Aging Clinical and Experimental Research, 24, 707–713.

    PubMed  Google Scholar 

  100. Chiatti, C., Di Rosa, M., Melchiorre, M. G., Manzoli, L., Rimland, J. M., & Lamura, G. (2013). Migrant care workers as protective factor against caregiver burden: Results from a longitudinal analysis of the EUROFAMCARE study in Italy. Aging & Mental Health, 17, 609–614.

    Article  Google Scholar 

  101. Shirai, Y., Silverberg Koerner, S., & Baete Kenyon, D. (2009). Reaping caregiver feelings of gain: The roles of socio-emotional support and mastery. Aging & Mental Health, 13, 106–117.

    Article  Google Scholar 

  102. Zambrano-Domínguez, E. M., & Guerra-Martín, M. D. (2012). Formación del cuidador informal: Relación con el tiempo de cuidado de personas dependientes mayores de 65 años. Aquichan, 12, 241–251.

    Article  Google Scholar 

  103. Crespo, L. & Mira, P. (2011). Cuidar a padres en situación de dependencia y trabajar. Autonomía Personal, 3, 26–39.

    Google Scholar 

  104. Rocha, B. M. P., & Pacheco, J. E. P. (2013). Elderly persons in a situation of dependence: Informal caregiver stress and coping. Acta Paulista de Enfermagem, 26, 50–56.

    Article  Google Scholar 

  105. United Nations. (2012). Population ageing and development 2012. New York, NY: Population Division, Department of Economic and Social Affairs, United Nations.

    Google Scholar 

  106. Saraceno, C. (2010). Social inequalities in facing old-age dependency: A bi-generational perspective. Journal of European Social Policy, 20, 32–44.

    Article  Google Scholar 

  107. Crespo, L., & Mira, P. (2010). Caregiving to elderly parents and employment status of European mature women. CEMFI working paper no. 1007. 2010.

  108. Whalen, K. J., & Buchholz, S. W. (2009). The reliability, validity and feasibility of tools used to screen for caregiver burden: A systematic review. JBI Library of Systematic Reviews, 7, 1372–1429.

    Google Scholar 

  109. Streiner, D. L. (2003). Starting at the beginning: An introduction to coefficient alpha and internal consistency. Journal of Personality Assessment, 80, 99–103.

    Article  PubMed  Google Scholar 

  110. Family Caregiver Alliance & Benjamin Rose Institute on Aging. (2012). Selected caregiver assessment measures: A resource inventory for practitioners (2nd ed.). CA: Family Caregiver Alliance.

    Google Scholar 

  111. Bastawrous, M. (2013). Caregiver burden—A critical discussion. International Journal of Nursing Studies, 50, 431–441.

    Article  PubMed  Google Scholar 

  112. Zarit, S. H., Reever, K. E., & Bach-Peterson, J. (1980). Relatives of the impaired elderly: Correlates of feelings of burden. The Gerontologist, 20, 649–655.

    Article  CAS  PubMed  Google Scholar 

  113. Prince, M., Brodaty, H., Uwakwe, R., Acosta, D., Ferri, C. P., Guerra, M., et al. (2012). Strain and its correlates among carers of people with dementia in low-income and middle-income countries. A 10/66 Dementia Research Group population-based survey. International Journal of Geriatric Psychiatry, 27, 670–682.

    Article  PubMed  PubMed Central  Google Scholar 

  114. Kim, M. D., Hong, S. C., Lee, C. I., Kim, S. Y., Kang, I. O., & Lee, S. Y. (2009). Caregiver burden among caregivers of Koreans with dementia. Gerontology, 55, 106–113.

    Article  PubMed  Google Scholar 

  115. Taemeeyapradit, U., Udomittipong, D., & Assanangkornchai, S. (2014). Development of a burden scale for caregivers of dementia patients. Asian Journal of Psychiatry, 8, 22–25.

    Article  PubMed  Google Scholar 

  116. Álvarez, L., González, A. M., & Muñoz, P. (2008). El cuestionario de sobrecarga del cuidador de Zarit. Cómo administrarlo e interpretarlo. Gaceta Sanitaria, 22, 618–619.

    Article  PubMed  Google Scholar 

  117. San Diego Prevention Research Center. (2015). Evaluation. Guidelines for culturally appropriate measures. http://www.sdprc.net/lhn-cam.php. Accessed on February 3, 2015.

  118. Hoefman, R. J., van, E. J., & Brouwer, W. B. (2013). Measuring the impact of caregiving on informal carers: A construct validation study of the CarerQol instrument. Health and Quality of Life Outcomes, 11, 173.

    Article  PubMed  PubMed Central  Google Scholar 

  119. Comans, T., et al. (2011). Factors associated with quality of life and caregiver strain amongst frail older adults referred to a community rehabilitation service: Implications for service delivery. Disability and Rehabilitation, 33, 1215–1221.

    Article  PubMed  Google Scholar 

  120. Joling, K. J., van Hout, H. P., Schellevis, F. G., van der Horst, H. E., Scheltens, P., Knol, D. L., & van Marwijk, H. W. (2010). Incidence of depression and anxiety in the spouses of patients with dementia: A naturalistic cohort study of recorded morbidity with a 6-year follow-up. American Journal of Geriatric Psychiatry, 18, 146–153.

    Article  PubMed  Google Scholar 

  121. Reese, J. P., Hessmann, P., Seeberg, G., Henkel, D., Hirzmann, P., Rieke, J., et al. (2011). Cost and care of patients with Alzheimer’s disease: Clinical predictors in German health care settings. Journal of Alzheimer’s Disease, 27, 723–736.

    PubMed  Google Scholar 

  122. Sørbye, L. W., Finne-Soveri, H., Ljunggren, G., Topinkova, E., Garms-Homolova, V., Jensdóttir, A. B., & Bernabei, R. (2009). Urinary incontinence and use of pads—Clinical features and need for help in home care at 11 sites in Europe. Scandinavian Journal of Caring Sciences, 23, 33–44.

    Article  PubMed  Google Scholar 

  123. Davis, K. L., Marin, D. B., Kane, R., Patrick, D., Peskind, E. R., Raskind, M. A., & Puder, K. L. (1997). The Caregiver Activity Survey (CAS): Development and validation of a new measure for caregivers of persons with Alzheimer’s disease. International Journal of Geriatric Psychiatry, 12, 978–988.

    Article  CAS  PubMed  Google Scholar 

  124. Given, C. W., Given, B., Stommel, M., Collins, C., King, S., & Franklin, S. (1992). The caregiver reaction assessment (CRA) for caregivers to persons with chronic physical and mental impairments. Research in Nursing & Health, 15, 271–283.

    Article  CAS  Google Scholar 

  125. Hooyman, N., Gonyea, J., & Montgomery, R. (1985). The impact of in-home services termination on family caregivers. The Gerontologist, 25, 141–145.

    Article  CAS  PubMed  Google Scholar 

  126. Balducci, C., Mnich, E., McKee, K. J., Lamura, G., Beckmann, A., Krevers, B., et al. (2008). Negative impact and positive value in caregiving: Validation of the COPE index in a six-country sample of carers. The Gerontologist, 48, 276–286.

    Article  PubMed  Google Scholar 

  127. Vernooij-Dassen, M. J., Persoon, J. M., & Felling, A. J. (1996). Predictors of sense of competence in caregivers of demented persons. Social Science and Medicine, 43, 41–49.

    Article  CAS  PubMed  Google Scholar 

  128. Pearlin, L. I., Mullan, J. T., Semple, S. J., & Skaff, M. M. (1990). Caregiving and the stress process: An overview of concepts and their measures. The Gerontologist, 30, 583–594.

    Article  CAS  PubMed  Google Scholar 

  129. Kaufer, D. I., Cummings, J. L., Ketchel, P., Smith, V., MacMillan, A., Shelley, T., et al. (2000). Validation of the NPI-Q, a brief clinical form of the Neuropsychiatric Inventory. Journal of Neuropsychiatry and Clinical Neurosciences, 12, 233–239.

    Article  CAS  PubMed  Google Scholar 

  130. Martín, M., Salvadó, I., Nadal, S., Miji, L. C., Rico, J. M., Lanz, P., & Taussig, M. I. (1996). Adaptación para nuestro medio de la Escala de Sobrecarga del Cuidador (Caregiver Burden Interview) de Zarit. Revista Multidisciplinar de Gerontología, 6, 338–346.

    Google Scholar 

  131. Taub, A., Andreoli, S. B., & Bertolucci, P. H. (2004). Dementia caregiver burden: Reliability of the Brazilian version of the Zarit caregiver burden interview. Cadernos de Saúde Pública, 20, 372–376.

    Article  PubMed  Google Scholar 

  132. Scazufca, M. (2002). Brazilian version of the Burden Interview scale for the assessment of burden of care in carers of people with mental illnesses. Revista Brasileira de Psiquiatria, 24, 12–17.

    Google Scholar 

  133. Gort, A. M., March, J., Gómez, X., de Miguel, M., Mazarico, S., & Ballesté, J. (2005). Escala de Zarit reducida en cuidados paliativos. Medicina Clínica, 124, 651–653.

    Article  PubMed  Google Scholar 

  134. Gitlin, L. N., Winter, L., Dennis, M. P., & Hauck, W. W. (2006). Assessing perceived change in the well-being of family caregivers: Psychometric properties of the Perceived Change Index and response patterns. American Journal of Alzheimer’s Disease & Other Dementias, 21, 304–311.

    Article  Google Scholar 

  135. Pukrop, R., Schlaak, V., Moller-Leimkuhler, A. M., Albus, M., Czernik, A., Klosterkotter, J., & Moller, H. J. (2003). Reliability and validity of Quality of Life assessed by the Short-Form 36 and the Modular System for Quality of Life in patients with schizophrenia and patients with depression. Psychiatry Research, 119, 63–79.

    Article  PubMed  Google Scholar 

  136. Ware, J, Jr, Kosinski, M., & Keller, S. D. (1996). A 12-Item Short-Form Health Survey: Construction of scales and preliminary tests of reliability and validity. Medical Care, 34, 220–233.

    Article  PubMed  Google Scholar 

  137. Alonso, J., Anto, J. M., & Moreno, C. (1990). Spanish version of the Nottingham Health Profile: Translation and preliminary validity. American Journal of Public Health, 80, 704–708.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  138. Fleck, M. P. A., Louzada, S., Xavier, M., Chachamovich, E., Vieira, G., Santos, L., & Pinzon, V. (2000). Aplicaçao da versão em português do instrumento abreviado de avaliação da qualidades de vida “WHOQOL-bref”. Revista de Saúde Pública, 34, 178–183.

    Article  CAS  PubMed  Google Scholar 

  139. Skevington, S. M., Lotfy, M., O’Connell, K. A., & WHOQOL Group. (2004). The World Health Organization’s WHOQOL-BREF quality of life assessment: Psychometric properties and results of the international field trial. A report from the WHOQOL group. Quality of Life Research, 13, 299–310.

    Article  CAS  PubMed  Google Scholar 

  140. Steffen, A. M., McKibbin, C., Zeiss, A. M., Gallagher-Thompson, D., & Bandura, A. (2002). The revised scale for caregiving self-efficacy: Reliability and validity studies. Journals of Gerontology: Psychological Sciences, 57B, 74–86.

    Article  Google Scholar 

  141. Fortinsky, R. H., Kercher, K., & Burant, C. J. (2002). Measurement and correlates of family caregiver self-efficacy for managing dementia. Aging & Mental Health, 6, 153–160.

    Article  CAS  Google Scholar 

  142. Tarlow, B. J., Wisniewski, S. R., Belle, S. H., Rubert, M., Ory, M. G., & Gallagher-Thompson, D. (2004). Positive aspects of caregiving: Contributions of the REACH project to the development of new measures for Alzheimer’s caregiving. Research on Aging, 26, 429–453.

    Article  Google Scholar 

  143. Sörensen, S., & Pinquart, M. (2001). Developing a measure of older adults’ preparation for future care needs. International Journal of Aging and Human Development, 53, 137–165.

    Article  PubMed  Google Scholar 

  144. Kuhn, D., & Fulton, B. R. (2004). Efficacy of an educational program for relatives of persons in the early stages of Alzheimer’s disease. Journal of Gerontological Social Work, 42, 109–130.

    Article  Google Scholar 

  145. Gitlin, L. N., Schinfeld, S., Winter, L., Corcoran, M., Boyce, A. A., & Hauck, W. (2002). Evaluating home environments of persons with dementia: Interrater reliability and validity of the Home Environmental Assessment Protocol (HEAP). Disability and Rehabilitation, 24, 59–71.

    Article  CAS  PubMed  Google Scholar 

  146. Togari, T., Yamazaki, Y., Nakayama, K., & Shimizu, J. (2007). Development of a short version of the sense of coherence scale for population survey. Journal of Epidemiology and Community Health, 61, 921–922.

    Article  PubMed  PubMed Central  Google Scholar 

  147. Losada-Baltar, A., Montorio Cerrato, I., Izal Fernández de Trocóniz, M., & Márquez González, M. (2006) Estudio e intervención sobre el malestar psicológico de los cuidadores de personas con demencia. El papel de los pensamientos disfuncionales (1ª ed.). Madrid: Instituto de Mayores y Servicios Sociales (IMSERSO).

  148. Sánchez-López, Md P, & Dresch, V. (2008). The 12-item General Health Questionnaire (GHQ-12): Reliability, external validity and factor structure in the Spanish population. Psicothema, 20, 839–843.

    Google Scholar 

  149. Montón, C., Pérez Echeverría, M. J., Campos, R., García Campayo, J., Lobo, A., & GMPPZ. (1993). Escalas de ansiedad y depresión de Goldberg: Una guía de entrevista eficaz para la detección del malestar psíquico. Atención Primaria, 12, 345–349.

    PubMed  Google Scholar 

  150. Harpham, T., Reichenheim, M., Oser, R., Thomas, E., Hamid, N., Jaswal, S., et al. (2003). Measuring mental health in a cost-effective manner. Health Policy & Planning, 18, 344–349.

    Article  Google Scholar 

  151. Yesavage, J. A., Brink, T. L., Rose, T. L., Lum, O., Huang, V., Adey, M., & Leirer, V. O. (1983). Development and validation of a geriatric depression screening scale: A preliminary report. Journal of Psychiatric Research, 17, 37–49.

    Article  CAS  Google Scholar 

  152. Almeida, O. P., & Almeida, S. A. (1999). Short versions of the geriatric depression scale: A study of their validity for the diagnosis of a major depressive episode according to ICD-10 and DSM-IV. International Journal of Geriatric Psychiatry, 14, 858–865.

    Article  CAS  PubMed  Google Scholar 

  153. Kroenke, K., Spitzer, R. L., & Williams, J. B. W. (2001). The PHQ-9. Validity of a brief depression severity measure. Journal of General Internal Medicine, 16, 606–613.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  154. Cohen, S., Kamarck, T., & Mermelstein, R. (1983). A global measure of perceived stress. Journal of Health and Social Behavior, 24, 385–396.

    Article  CAS  PubMed  Google Scholar 

  155. Clark, P. C., Shields, C. G., Aycock, D., & Wolf, S. L. (2003). Preliminary reliability and validity of a family caregiver conflict scale for stroke. Progress in Cardiovascular Nursing, 18(77–82), 92.

    Google Scholar 

  156. Lubben, J., Blozik, E., Gillmann, G., Iliffe, S., von Renteln, K. W., Beck, J. C., & Stuck, A. E. (2006). Performance of an abbreviated version of the Lubben Social Network Scale among three European community-dwelling older adult populations. The Gerontologist, 46, 503–513.

    Article  PubMed  Google Scholar 

  157. Bellón Saameño, J. A., Delgado Sánchez, A., de Dios Luna del Castillo, J., & Lardelli Claret, P. (1996). Validez y fiabilidad del cuestionario de apoyo social funcional Duke-UNC-11. Atención Primaria, 18, 153–163.

    PubMed  Google Scholar 

  158. de la Revilla Ahumada, L., Bailón, E., de Dios Luna, J., Delgado, A., Prados, M. A., & Fleitas, L. (1991). Validación de una escala de apoyo social funcional para su uso en la consulta del médico de familia. Atención Primaria, 8, 688–692.

    PubMed  Google Scholar 

  159. Buysse, D. J., Reynolds, C. F, I. I. I., Monk, T. H., Berman, S. R., & Kupfer, D. J. (1988). The Pittsburgh Sleep Quality Index: A new instrument for psychiatric practice and research. Psychiatry Research, 28, 193–213.

    Article  Google Scholar 

Download references

Author contributions

IM, IV, IL, MM and CC designed the study and contributed to data analysis and interpretation. IM and MM acquired data. IM wrote the manuscript and the other authors participated in the review of the different drafts and approved the final version.

Author information

Authors and Affiliations

Authors

Corresponding author

Correspondence to Mónica Machón.

Ethics declarations

Conflict of interest

All authors declare that they have no conflict of interest.

Ethical approval

This article does not contain any studies with human participants performed by any of the authors. The study design of the manuscript corresponds to a systematic review of the literature.

Rights and permissions

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

Mosquera, I., Vergara, I., Larrañaga, I. et al. Measuring the impact of informal elderly caregiving: a systematic review of tools. Qual Life Res 25, 1059–1092 (2016). https://doi.org/10.1007/s11136-015-1159-4

Download citation

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s11136-015-1159-4

Keywords

Navigation