Gain related to the care of people with dementia: concept analysis
DOI:
https://doi.org/10.15649/cuidarte.5112Keywords:
Dementia, Reward, Outcome Expectations, CaregiversAbstract
Highlights
- The number of people caring for people with dementia is growing rapidly worldwide, and their informal caregiving experience is comprehensive and inclusive.
- It is necessary to deepen the conceptual clarity of the gains from caregiving in order to advance its research without limiting the approach to positive experiences in family caregivers.
- The concept of caring gain is useful to research on care for people with dementia, given its importance in improving the quality of care.
- This clarification contributes to the development of concepts of impact or positive effects of care in dementia, and to the creation of instruments to assess the experience of family care.
Introduction: The concept of gain of caring has been used as a synonym for positive aspects of care, making it difficult to use in research and practice. Objective: To clarify the concept of care gain in dementia contexts. Material and Methods: The analysis of the concept of gaining care was conducted according to Walker and Avant's Methodology in 2019, with the seven steps adjusted for this study. Data were collected by a literature search during August 2024, in the databases SCOPUS, WEB OF SCIENCE, CINAHL, ProQuest, LILACS, and a manual search of article references with no time limit. Eighteen original and review studies were included in the analysis. Results: The conceptual clarification defines caregiving gain as a positive, enriching consequence that emerges from the interaction among contextual components (individual, relational, community, and social), as well as the quality and quantity of direct care activities and the duration of the caregiving role. This gain transcends both the active caregiving period and the stage after its completion. Discussion: The gain of caring includes contextual elements, time, and care burden variables, whose interactions enrich the caregiver experience and enhance the quality of care. This clarification, while recognizing its phenomenological nature, will facilitate its appropriate use in research and practice of dementia caregiving. Conclusions: In family caregiving in dementia, the gain of care is an enriching consequence for the caregiver and improves the quality of care. It is suggested that its subjective nature be considered in future studies and nursing practice.
How to cite this article: Lozano-Romero Alba N, Miranda-Castillo Claudia. Gain related to the care of people with dementia: concept analysis. Revista Cuidarte. 2026;17(1):e5112. https://doi.org/10.15649/cuidarte.5112
References
Organizacion Mundial de la Salud (OMS). Informe sobre la situación mundial de la respuesta de la salud pública a la demencia: resumen ejecutivo. Ginebra; 2022. Consulta: Agosto 30, 2024. Disponible en: https://books.google.com.br/books?id=a3VyEAAAQBAJ
Organizacion Mundidal de la Salud (OMS). Demencia. 2023. Consulta: Agosto 30, 2024. Disponible en: https://www.who.int/es/news-room/fact-sheets/detail/dementia
Methi F, Nes RB, Skirbekk V, Hansen T. The double-edged sword of becoming a caregiver: dynamic impact on four dimensions of well-being in Norway. BMC Psychol. 2024;12(1):120. https://doi.org/10.1186/s40359-024-01623-x
Ministerio de Planificación. Ley N°20.422 Establece Normas sobre Igualdad de Oportunidades e Inclusión Social de las Personas con Discapacidad. Chile 2010. Consulta: Noviembre 17, 2024. Disponible en: https://bcn.cl/2f7s1
The Lancet Public Health. Will dementia hamper healthy ageing? Lancet Public Healt. 2022;7(2):e93. https://doi.org/10.1016/S2468-2667(22)00009-3
Huenchuan S. Envejecimiento, personas mayores y Agenda 2030 para el Desarrollo Sostenible Perspectiva regional y de derechos humanos. Comisión Económica para América Latina y el Caribe (CEPAL), Santiago; 2018. 259p. Consulta: Octubre 15, 2024. Disponible en: https://n9.cl/3pw0g
Kramer BJ. Gain in the Caregiving Experience: Where Are We? What Next? Gerontologist. 1997;37(2):218–32. https://doi.org/10.1093/geront/37.2.218
Wng J, Li XL, Liu WC, Yang B, Zhao QH, Lue Y, et al. The positive aspects of caregiving in dementia: A scoping review and bibliometric analysis. Front PUBLIC Heal. 2022;10. https://doi.org/10.3389/fpubh.2022.985391
Yap P, Luo N, Ng WY, Chionh HL, Lim J, Goh J. Gain in Alzheimer Care INstrument—A New Scale to Measure Caregiving Gains in Dementia. Am J Geriatr Psychiatry. 2010;18(1):68–76. https://doi.org/10.1097/JGP.0b013e3181bd1dcd
Lloyd J, Patterson T, Muers J. The positive aspects of caregiving in dementia: A critical review of the qualitative literature. Dementia. 2016;15(6):1534–61.: https://doi.org/10.1177/1471301214564792
Quinn C, Nelis SM, Martyr A, Victor C, Morris RG, Clare L, et al. Influence of Positive and Negative Dimensions of Dementia Caregiving on Caregiver Well-Being and Satisfaction With Life: Findings From the IDEAL Study. Am J Geriatr Psychiatry, 2019;27(8):838–48. https://doi.org/10.1016/j.jagp.2019.02.005
Liu H, Kuo L, Shyu YL, Hsu W. Predictors of rewarded caregiving for family caregivers of person with dementia: A longitudinal study. Res Nurs Health. 2024;47(1):93–103. https://doi.org/10.1002/nur.22370
Carbonneau H, Caron C, Desrosiers J. Development of a conceptual framework of positive aspects of caregiving in dementia. Dementia. 2010;9(3):327–53. . https://doi.org/10.1177/1471301210375316
Schulz R, Sherwood PR. Physical and Mental Health Effects of Family Caregiving. AJN, Am J Nurs. 2008;108(9):23–7. https://doi.org/10.1097/01.NAJ.0000336406.45248.4c
Joling KJ, van Marwijk HWJ, Veldhuijzen AE, van der Horst HE, Scheltens P, Smit F, et al. The two-year incidence of depression and anxiety disorders in spousal caregivers of persons with dementia: who is at the greatest risk? Am J Geriatr Psychiatry 2015;23(3):293–303. https://dx.doi.org/10.1016/j.jagp.2014.05.005
Fabà J, Villar F, Westerhof G. Perceived Caregiving Trajectories and their Relationship with Caregivers’ Burdens and Gains. Span J Psychol. 2023;26:e12. https://doi.org/10.1017/SJP.2023.12
García-Castro FJ, Alba A, Blanca MJ. The role of character strengths in predicting gains in informal caregivers of dementia. Aging Ment Health. 2021;25(1):32–7. https://doi.org/10.1080/13607863.2019.1667298
Polenick CA, Kales HC, Birditt KS. Perceptions of Purpose in Life Within Spousal Care Dyads: Associations With Emotional and Physical Caregiving Difficulties. Ann Behav Med. 2018;52(1):77–87. https://doi.org/10.1093/abm/kax005
Bai YL, Shyu YIL, Huang HL, Chiu YC, Hsu WC. The enrichment process for family caregivers of persons living with dementia: A grounded theory approach. J Adv Nurs. 2024;80(1):252–63. https://doi.org/10.1111/jan.15809
Pendergrass A, Weiss S, Rohleder N, Graessel E. Validation of the Benefits of Being a Caregiver Scale (BBCS) - further development of an independent characteristic of informal caregiving. BMC Geriatr. 2023;23:26. https://doi.org/10.1186/s12877-022-03650-y
Walker LO, Avant KC. Strategies for theory construction in nursing. (5th ed.). Hall P, editor. Norwalk: Appleton & Lange.; 2011. 243 p.
Cianelli R., Ferrer L. Análisis de concepto: una estrategia para desarrollar conocimiento en enfermería. Horiz Enfermería. 2001;12(1):46–52. https://redae.uc.cl/index.php/RHE/article/view/11456
Rodrigo-Pedrosa O, Fontanella JC. Aplicación del Método del Análisis de Concepto al Desarrollo de la Sensibilidad Teórica Aplicada a Indagaciones Cualitativas de Carácter Inductivo: A propósito del Uso del Término “Cosmovisión.” New Trends in Qualitative Research. 2021;9:293–301. https://doi.org/10.36367/ntqr.9.2021.293-301
Walker LO, Avant KC. Strategies for Theory Construction in Nursing (6th Edition) Boston : Pearson Prentice Hall,; 2019. 272 p. Disponible en: https://nursemygrade.com/assets/order/nsg-501-strategies-for-theory-construction-in-nursing4.pdf
Liu Z, Heffernan C, Tan J. Caregiver burden: A concept analysis. Int J Nurs Sci. 2020;7(4):438–45. https://doi.org/10.1016/j.ijnss.2020.07.012
Lozano Romero A. “Cribado de información”, Mendeley Data, V1, 2025. https://doi.org/10.17632/52d58g34xd.1
Real Academia Española. Diccionario de la lengua española, 23.a ed. 2021. Consulta: Septiembre 11, 2024. Disponible en: https://dle.rae.es/desenlace#otras
Lawton MP, Kleban MH, Moss M, Rovine M, Glicksman A. Measuring Caregiving Appraisal. J Gerontol. 1989;44(3):61–71. https://doi.org/10.1093/geronj/44.3.P61
Lawton MP, Moss M, Kleban MH, Glicksman A, Rovine M. A Two-factor Model of Caregiving Appraisal and Psychological Well-Being. J Gerontol. 1991;46(4):181-189. https://doi.org/10.1093/geronj/46.4.p181
Grover S, Nehra R, Malhotra R, Kate N. Positive aspects of caregiving experience among caregivers of patients with dementia. East Asian Arch Psychiatry. 2017;27(2):71-8. https://pubmed.ncbi.nlm.nih.gov/28652500/
Lawton MP, Rajagopal D, Brody E, Kleban MH. The Dynamics of Caregiving for a Demented Elder Among Black and White Families. J Gerontol. 1992;47(4):S156–64. https://doi.org/10.1093/geronj/47.4.s156
Kramer BJ. Marital History and the Prior Relationship as Predictors of Positive and Negative Outcomes among Wife Caregivers. Fam Relat. 1993;42(4):367-375. https://doi.org/10.2307/585336
Orbell S, Hopkins N, Gillies B. Measuring the impact of informal caring. J Community Appl Soc Psychol. 1993;3(2):149-163. https://doi.org/10.1002/casp.2450030207
Farran CJ, Keane-Hagerty E, Salloway S, Kupferer S, Wilken CS. Finding Meaning: An Alternative Paradigm for Alzheimer’s Disease Family Caregivers. Gerontologist. 1991;31(4):483-489. https://doi.org/10.1093/geront/31.4.483
Pearlin LI, Mullan JT, Semple SJ, Skaff MM. Caregiving and the Stress Process: An Overview of Concepts and Their Measures. Gerontologist. 1990;30(5):583-594. https://doi.org/10.1093/geront/30.5.583
Wallsten SM, Snyder SS. A comparison of elderly family caregivers’ and noncaregivers’ perceptions of stress in daily experiences. J Community Psychol. 1990;18(3):228-238. https://doi.org/10.1002/1520-6629(199007)18:3<228::aid-jcop2290180306>3.0.co;2-u
Kindratt TB, Sylvers DL, Yoshikawa A, López-Anuarbe M, Webster NJ, Bouldin ED, et al. Dementia Caregiving Experiences and Health Across Geographic Contexts by Race and Ethnicity. The Journals of Gerontology: Series B. 2023;78(1):S48-58. https://doi.org/10.1093/geronb/gbac182
Haley WE, Gitlin LN, Wisniewski SR, Mahoney DF, Coon DW, Winter L, et al. Well-being, appraisal, and coping in African-American and Caucasian dementia caregivers: findings from the REACH study. Aging & Mental Health. 2004;8(4):316-329. https://doi.org/10.1080/13607860410001728998
Tulloch K, McCaul T, Scott TL. Positive Aspects of Dementia Caregiving During the COVID-19 Pandemic. Clinical Gerontologist. 2022;45(1):86–96. https://doi.org/10.1080/07317115.2021.1929630
Lang SF, Fowers BJ. An expanded theory of Alzheimer’s caregiving. American Psychologist. 2019;74(2):194–206. https://dx.doi.org/10.1037/amp0000323
Pendergrass A, Mittelman M, Graessel E, Ozbe D, Karg N. Predictors of the personal benefits and positive aspects of informal caregiving. Aging & Mental Health. 2019;23(11):1533-1538. https://doi.org/10.1080/13607863.2018.1501662
Stephens MAP, Franks MM, Townsend AL. Stress and rewards in women’s multiple roles: The case of women in the middle. Psychology and Aging. 1994;9(1):45-52. https://doi.org/10.1037/0882-7974.9.1.45
Sanders S. Is the glass half empty or half full? Reflections on strain and gain in caregivers of individuals with Alzheimer’s disease. Social Work in Health Care. 2005;40(3):57–73. https://doi.org/10.1300/J010v40n03_04
Netto NR, Jenny GYN, Philip YLK. Growing and gaining through caring for a loved one with dementia. Dementia. 2009;8(2):245–61. https://doi.org/10.1177/1471301209103269
Ponsoda JM, Díaz A. Positive Emotions in Family Caregivers of Alzheimer’s Disease Patients: Factors Associated with Gain in Caregiving from a Gender Perspective. Journal of Clinical Medicine. 2024;13(8);2322. https://doi.org/10.3390/jcm13082322
Yu DSF, Cheng ST, Wang J. Unravelling positive aspects of caregiving in dementia: An integrative review of research literature. Int. J. Nurs. Stud. 2018;79:1–26. . https://doi.org/10.1016/j.ijnurstu.2017.10.008%0A
García-Castro FJ, Holgado-Tello FP, Blanca MJ. New Evidence for the Psychometric Properties of the Spanish Version of the Gain in Alzheimer Care Instrument. The Spanish Journal of Psychology. 2021;24:e32. https://doi.org/10.1017/SJP.2021.32
Samia LW, O’Sullivan A, Fallon KC, Aboueissa AM, Hepburn KW. Building on Self-efficacy for Experienced Family Caregivers: The Savvy Advanced Program. The Gerontologist. 2019;59(5):973–982. https://doi.org/10.1093/geront/gny016
Al-Zyoud E, Maharmeh M, Ahmad M. Family experiences of caregiving to patients with Alzheimer. Working with Older People. 2021;25(2):115–122. https://doi.org/10.1108/WWOP-02-2020-0006
Cho J, Ory MG, Stevens AB. Socioecological factors and positive aspects of caregiving: findings from the REACH II intervention. Aging & Mental Health. 2016;20(11):1190-1201. https://doi.org/10.1080/13607863.2015.1068739
Park NS, Matta-Singh TD, Park J, Rhee MK, Chung S, Jang Y. Dementia Caregiving Experiences Among Korean Americans: Qualitative Inquiry Using the Stress Process Perspective. Journal of Gerontological Social Work. 2024;67(8):1189-1210. https://doi.org/10.1080/01634372.2024.2366259
Malhotra C, Chaudhry I, Shah SU, Ostbye T, Malhotra R. Trajectories of negative and positive experiences of caregiving for older adults with severe dementia: application of group-based multi-trajectory modelling. BMC Geriatr. 2024;24:172. https://doi.org/10.1186/s12877-024-04777-w
Polenick CA, Leggett AN, Maust DT, Kales HC. Medical Care Tasks among Spousal Dementia Caregivers: Links to Care-Related Sleep Disturbances. The American Journal of Geriatric Psychiatry. 2018;26(5):589-597. https://doi.org/10.1016/j.jagp.2018.01.206
Rohr MK, Lang FR. The Role of Anticipated Gains and Losses on Preferences About Future Caregiving. The Journal of Gerontology: Seires B. 2016;71(3):405-414. https://doi.org/10.1093/geronb/gbu145
Crespo-Maraver M, Doval E, Fernández-Castro J, Giménez-Salinas J, Prat G, Bonet P. Salud del cuidador: adaptación y validación del cuestionario Experience of Caregiving Inventory (ECI) en población española. Gaceta Sanitaria. 2019;33(4):348–355. http://dx.doi.org/10.1016/j.gaceta.2017.12.005
Yap P, Luo N, Ng WY, Chionh HL, Lim J, Goh J. Gain in Alzheimer Care INstrument—A New Scale to Measure Caregiving Gains in Dementia. The American Journal of Geriatric Psychiatry. 2010;18(1):68-76. https://www.ajgponline.org/article/S1064-7481(12)60274-7/pdf
Cascella Carbó GF, García-Orellán R. Burden and Gender inequalities around Informal Care. Investigación y Educación en Enfermería. 2020;38(1). https://doi.org/10.17533/udea.iee.v38n1e10
de Labra C, Millán-Calenti JC, Buján A, Núñez-Naveira L, Jensen AM, Peersen MC, et al. Predictors of caregiving satisfaction in informal caregivers of people with dementia. Archives of Gerontology and Geriatrics. 2015;60(3):380–8. https://doi.org/10.1016/j.archger.2015.03.002
Downloads
Published
How to Cite
Downloads
Issue
Section
Categories
License
Copyright (c) 2026 Revista Cuidarte
This work is licensed under a Creative Commons Attribution 4.0 International License.
Journal Cuidarte, scientific publication of open access, is licensed under a Creative Commons Attribution (CC BY-NC), which permits use, distribution and reproduction in any medium, provided the original work is properly cited and is not used for commercial purposes.
Any other form of use such as reproduction, transformation, public communication or distribution, for profit, requires the prior authorization of the University of Santander UDES.
The names and e-mail addresses entered in the Journal Cuidarte will be used exclusively for the purposes stated by this magazine and will not be available for any other purpose or other person.
The articles published in the Journal Cuidarte represent the criteria of their authors and do not necessarily constitute the official opinion of the University of Santander UDES.
