Perspectivas del cuidado en personas con discapacidad intelectual que envejecen: una revisión sistemática

• González-Carrasco, Félix ^[1] ; Álvarez-Aguado, Izaskun ^[2] ; Vega-Córdova, Vanessa ^[1]
  1. [1] Pontificia Universidad Católica de Valparaíso

     Pontificia Universidad Católica de Valparaíso

     Valparaíso, Chile

     
  2. [2] Universidad de las Américas y Millennium Institute for Care Research (MICARE). Chile
• Localización: Siglo Cero: Revista Española sobre Discapacidad Intelectual, ISSN 2530-0350, Vol. 57, Nº 1, 2026, págs. 171-190
• Idioma: español
• DOI: 10.14201/scero.32498
• Títulos paralelos:
  • Care perspectives in aging people with intellectual disabilities: A systematic review
• Enlaces
  • Texto completo
• Resumen
  • español

    Las personas con discapacidad intelectual están envejeciendo y alcanzando edades que superan registros de otras épocas. Las prácticas de cuidado marcan esta trayectoria y su comprensión sigue siendo limitada. Este artículo presenta una revisión sistemática de alcance sobre perspectivas del cuidado en el envejecimiento de personas con discapacidad intelectual, analizando 96 artículos de un total de 1.445. Se realizó un análisis temático y de correspondencias múltiples que favoreció la organización de la información y la descripción de resultados. Los resultados se organizaron con base en cuatro temáticas: Programas y servicios de apoyo, Salud y morbilidad, Familia y hogares y Percepción del envejecimiento. Los análisis describen los elementos más relevantes identificados, además de destacar brechas y temas urgentes relacionados con el cuidado de personas con discapacidad intelectual que envejecen. Esta revisión identificó diversas brechas respecto a cómo se está conceptualizando e investigando el cuidado con personas con discapacidad intelectual que envejecen. Se sostiene la necesidad de ampliar la perspectiva de las investigaciones con relación al cuidado, que represente necesidades y derechos legítimos del envejecimiento de personas con discapacidad intelectual.

  • English

    People with intellectual disabilities are living longer than ever before, reaching ages previously unrecorded in this population. Care practices play a central role in shaping this aging process; however, their conceptualization and understanding remain limited. This article presents a scoping review that explores perspectives on care in the context of aging with intellectual disability, based on the analysis of 96 articles selected from an initial pool of 1,445. A thematic analysis, complemented by a multiple correspondence analysis, was conducted to organize and interpret the findings. The results were grouped into four thematic areas: Support programs and services, Health and morbidity, Family and households, and Perceptions of aging. These analyses highlight key elements and recurrent patterns across studies, while also revealing critical gaps and emerging challenges in the field. The review underscores the need to expand current research perspectives on care, ensuring that they reflect the lived experiences, needs, and rights of people with intellectual disabilities as they grow older.

• Referencias bibliográficas
  • Adam, E., Sleeman, E., Brearley, S., Hunt, K. y Tuffrey-Wijne, I. (2020). The palliative care needs of adults with intellectual disabilities...
  • Ahlström, G., Wallén, F., Tideman, M. y Holmgren, M. (2022). Ageing people with intellectual disabilities and the association between frailty...
  • Alftberg, Å., Johansson, M. y Ahlström, G. (2021). Ambivalence among staff regarding ageing with intellectual disabilities: Experiences and...
  • American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders (DSM-V). American Psychiatric Association.
  • Araten-Bergman, T. y Bigby, C. (2024). Supporting healthy ageing for people with intellectual disabilities in group homes: Staff experiences....
  • Arksey, H. y O’Malley, L. (2005). Scoping studies: Towards a methodological framework. International Journal of Social Research Methodology,...
  • Axmon, A., Ahlström, G., Gagnemo, R. y Eberhard, J. (2019). Demographic and diagnostic profiles of older people with intellectual disability...
  • Bigby, C. (2008). Beset by obstacles: A review of Australian policy development to support ageing in place for people with Intellectual disability....
  • Bigby, C., Bowers, B. y Webber, R. (2011). Planning and decision making about the future care of older group home residents and transition...
  • Bigby, C., McCallion, P. y McCarron, M. (2014). Serving an elderly population. En M. Agran, F. Brown, C. Hughes, C. Quirk y D. Ryndak (Eds.),...
  • Brennan, D., McCausland, D., O’Donovan, M. A., Eustace-Cook, J., McCallion, P. y McCarron, M. (2020). Approaches to and outcomes of future...
  • Brennan, D., Murphy, R., McCallion, P. y McCarron, M. (2018). «What’s going to happen when we’re gone?» Family caregiving capacity for older...
  • Brown, A. y Gill, J. (2009). New voices in women’s health: Perceptions of women with intellectual and developmental disabilities. Intellectual...
  • Bryant, L.y Garnham, B. (2017). Bounded choices: The problematisation of longterm care for people ageing with an intellectual disability in...
  • Buys, L., Boulton-Lewis, G., Tedman-Jones, J., Edwards, H., Knox, M. y Bigby, C. (2008). Issues of active ageing: Perceptions of older people...
  • Byram, E. (2018). Late-life challenges in caregiving for an adult child with a developmental disability. Generations: Journal of the American...
  • Cancio-Bello, C., Ruiz, A. y Alarcó, G. (2020). Autocuidado: una aproximación teórica al concepto. Informes Psicológicos, 20(2),119-138. https://doi.org/10.18566/infpsic.v20n2a9
  • Chou, Y. C. y Kröger, T. (2022). Ageing in place together: Older parents and ageing offspring with intellectual disability. Ageing and Society,...
  • Coyle, C. E., Kramer, J. y Mutchler, J. E. (2014). Aging together: Sibling carers of adults with intellectual and developmental disabilities....
  • Dew, A., Llewellyn, G. y Gorman, J. (2006). “Having the time of my life”: An exploratory study of women with intellectual disability growing...
  • Díaz Monroy, L. G., Morales Rivera, M. A. y León Dávila, L. R. (2018). Análisis estadístico de datos categóricos (1.ª ed.). Universidad Nacional...
  • Dusart, A. (2008). Perceptions of death among adults with intellectual disability and awareness of their own mortality. International Journal...
  • Dusart, A. (2011). Perceptions of death among adults with intellectual disability. En D. Satgé y J. Merrick (Eds.), Cancer in children and...
  • Dusart, A. (2018). How do people with disabilities die in France today? Current state of end-of-life and dying conditions for adults with...
  • Egan, C., Mulcahy, H. y Naughton, C. (2022). Transitioning to long-term care for older adults with intellectual disabilities: A concept analysis....
  • Ellison, C., White, A. y Chapman, L. (2011). Avoiding institutional outcomes for older adults living with disability: The use of community-based...
  • Engwall, K. (2017). “I’m too old to think five years ahead”. Parent carers of adult children with intellectual disabilities in Sweden. Alter,...
  • Esteba-Castillo, S., Vidal, N. R., Baró i Dilmé, M. y Alsina, R. N. (2006). Envejecimiento saludable en personas con síndrome de Down y demencia:...
  • Forrester-Jones, R., Beecham, J. K., Barnoux, M., Oliver, D., Couch, E. y Bates, C. (2017). People with intellectual disabilities at the end...
  • Garnham, B., Bryant, L., Ramcharan, P., Yu, N. y Adams, V. (2019). Policy, plans and pathways: The ‘crisis’ transition to post-parental care...
  • Gómez, L. E., Schalock, R. L. y Verdugo, M. Á. (2021). A new paradigm in the field of intellectual and developmental disabilities: Characteristics...
  • González-Carrasco, F., Vega, V. y Álvarez-Aguado, I. (2025). Narrativas identitarias de personas adultas con discapacidad intelectual sobre...
  • Goodley, D. (2023). Being human as praxis: For people with learning disabilities. Subjectivity, 30(2), 167-184. https://doi.org/10.1057/s41286-023-00159-6
  • Greenacre, M. J. (2017). Correspondence analysis in practice (3.ª ed.). CRC Press, Taylor and Francis Group.
  • Hahn, J. E. (2012). Minimizing health risks among older adults with intellectual and/or developmental disabilities: Clinical considerations...
  • Hahn, J. E. y Aronow, H. U. (2005). A pilot of a gerontological advanced practice nurse preventive intervention. Journal of Applied Research...
  • Heslop, P., Blair, P. S., Fleming, P., Hoghton, M., Marriott, A. y Russ, L. (2014). The confidential inquiry into premature deaths of people...
  • Heslop, P., Byrne, V., Calkin, R., Gielnik, K. y Huxor, A. (2022). Establishing a national mortality review programme for people with intellectual...
  • Heslop, P. y Hoghton, M. (2019). Mortality in people with intellectual disability. En M. Scheepers y M. Kerr (Eds.), Seminars in the psychiatry...
  • Hussain, R., Janicki, M. P., Knox, M., Wark, S. y Parmenter, T. (2019). Perspectives about support challenges facing health workers assisting...
  • Hussain, R., Wark, S., Janicki, M. P., Parmenter, T., Knox, M. y Tabatabaei-Jafari, H. (2021). Mental health of older people with mild and...
  • Hutchings, B. L. y Chaplin, E. (2017). The relationship of person-environment fit to perceptions of autonomy, competency and satisfaction...
  • Innes, A., McCabe, L. y Watchman, K. (2012). Caring for older people with an intellectual disability: A systematic review. Maturitas, 72(4),...
  • Johansson, M., Björne, P., Runesson, I. y Ahlström, G. (2017). Healthy ageing in people with intellectual disabilities from managers’ perspective:...
  • Kessel, S. y Merrick, J. (2001). The benefits of jewish mourning rituals for the grieving individual with intellectual disabilities. Journal...
  • Kim, N. H., Hoyek, G. E. y Chau, D. (2011). Long-term care of the aging population with intellectual and developmental disabilities. Update...
  • Lê, S., Josse, J. y Husson, F. (2008). FactoMineR: An R package for multivariate analysis. Journal of Statistical Software, 25(1). https://doi.org/10.18637/jss.v025.i01
  • Levac, D., Colquhoun, H. y O’Brien, K. K. (2010). Scoping studies: Advancing the methodology. Implementation Science, 5(1), 69. https://doi.org/10.1186/1748-5908-5-69
  • Lin, J. D. y Lin, L. P. (2021). Mental disorders and the impacts in older adults with intellectual disabilities. Review Journal of Autism...
  • Lin, J. D., Lin, L. P. y Hsu, S. W. (2016). Aging people with intellectual disabilities: Current challenges and effective interventions. Review...
  • Lin, J. D., Wu, C. L., Lin, P. Y., Lin, L. P. y Chu, C. M. (2011). Early onset ageing and service preparation in people with intellectual...
  • Lluch, E. (2018). Gobierno biopolítico del malestar e infraestructuras de cuidado. En J. Solé y A. Pié Balaguer (Eds.), Políticas del sufrimiento...
  • Lougheed, D. (2019). Approach to providing care for aging adults with intellectual and developmental disabilities. Canadian Family Physician/Médecin...
  • Low, L. P. L., Chien, W. T., Lam, L. W. y Wong, K. K. Y. (2017). A qualitative study protocol of ageing carers’ caregiving experiences and...
  • Mahon, A., Tilley, E., Randhawa, G., Pappas, Y. y Vseteckova, J. (2019). Ageing carers and intellectual disability: A scoping review. Quality...
  • Marzi, G., Balzano, M. y Marchiori, D. (2024). K-Alpha Calculator–Krippendorff’s Alpha Calculator: A user-friendly tool for computing Krippendorff’s...
  • Matos, N., Glisoi, S. y Boschetti, D. (2015). Multidisciplinary expertise in consulting family program for people with intellectual disabilities...
  • McCausland, D., Guerin, S., Tyrrell, J., Donohoe, C., O’Donoghue, I. y Dodd, P. (2021). A qualitative study of the needs of older adults with...
  • McGinley, J. M. y Knoke, V. (2018). Conceptualising person-centered advance care planning for people with intellectual disabilities: A multifaceted...
  • Millán-Calenti, J. C., Seijas, S., Lodeiro, S., Mariana, H., Quintana, J. y Meleiro, L. (2006). Aging and sociosanitary features of people...
  • Naciones Unidas. (2006). Convención Internacional sobre los Derechos de las Personas con Discapacidad. Naciones Unidas.
  • Niedbalski, J. (2023). Life strategies parents of people with profound intellectual and multiple disabilities living in Poland regarding their...
  • Northway, R., Holland-Hart, D. y Jenkins, R. (2017). Meeting the health needs of older people with intellectual disabilities: Exploring the...
  • Oliver, M. (1998). ¿Una sociología de la discapacidad o una sociología discapacitada? En L. Barton (Ed.), Discapacidad y sociedad (pp. 34-58)....
  • Orem, D. E. (1983). The self-care deficit theory of nursing: A general theory. En Clements, I. y Roberts, F. (Eds.), Family Health: A Theoretical...
  • Organización Mundial de la Salud. (2022, octubre 1). Envejecimiento y salud. https://www.who.int/es/news-room/fact-sheets/detail/ageing-and-health
  • Patti, P., Amble, K. y Flory, M. (2010). Placement, relocation and end of life issues in aging adults with and without Down’s syndrome: A...
  • Pié Balaguer, A. (2018). Abrir sufrimientos para habitar otra vida. En J. Solé y A. Pié Balaguer (Eds.), Políticas del sufrimiento y la vulnerabilidad...
  • Piña Morán, M. E., Olivo Viana, M. G., Martínez Matamala, C. A., Poblete Troncoso, M. y Guerra Guerrero, V. (2022). Envejecimiento, calidad...
  • Read, S. y Cartlidge, D. (2012). Critical reflections on end-of-life care for people with intellectual disabilities: A single case study approach....
  • Reilly, K. O. y Conliffe, C. (2002). Facilitating future planning for ageing adults with intellectual disabilities using a planning tool that...
  • Revuelta, B. (2019). La complejidad de abordar los cuidados y la discapacidad. Algunos guiños reflexivos para el caso chileno. En A. Yarza...
  • Revuelta, B. y Hernández, R. (2021). Estudios críticos en discapacidad: aportes epistemológicos de un campo plural. Cinta de Moebio, 70, 17-33....
  • Riu, C. (2012). El feminismo y las políticas de la dependencia. En A. Pié Balaguer (Ed.), Deconstruyendo la dependencia: propuestas para una...
  • Roll, A. y Kurtzahn, C. (2024). Aging people with intellectual disabilities in need of care: Challenges, strategies, and consequences for...
  • Ryan, A., Taggart, L., Truesdale-Kennedy, M. y Slevin, E. (2014). Issues in caregiving for older people with intellectual disabilities and...
  • Saxena, M. (2015). Variables that can enhance and complicate sibling caregiving of individuals with intellectual and developmental disabilities....
  • Schalock, R. (2009). La nueva definición de discapacidad intelectual, apoyos individuales y resultados personales. Siglo Cero, 40(229), 22-39.
  • Schalock, R., Luckasson, R. y Tassé, M. (2021). Discapacidad intelectual: definición, diagnóstico, clasificación y sistemas de apoyos. 12.a...
  • Schiettecat, T., Campens, J., Roets, G., De Witte, N., Lesseliers, J. y Goethals, I. (2023). Care and support for older people with intellectual...
  • Shakespeare, T. (2016). The social model of disability. En L. J. Davis (Ed.), The Disability Studies Reader (5.ª ed.) (pp. 195-203). Routledge.
  • Shaw, K., Cartwright, C. y Craig, J. (2011). The housing and support needs of people with an intellectual disability into older age. Journal...
  • Shooshtari, S., Stoesz, B. M., Udell, L., Fenez, L., Dik, N., Burchill, C., Sachs, E. y Menec, V. (2017). Aging with intellectual and developmental...
  • Shrestha, S. y Weber, G. (2002). The situation of older people with intellectual disability in Nepal: A pilot study. Journal of Intellectual...
  • Spassiani, N. A., Meisner, B. A., Abou Chacra, M. S., Heller, T. y Hammel, J. (2019). What is and isn’t working: Factors involved in sustaining...
  • Takebayashi, R. B., Fernandes, H., Cruz, M. G. D. S. D., Perseguino, M. G., Marques, S. E. M. y Horta, A. L. D. M. (2019). The aging of families...
  • Tassé, M., Schalock, R., Balboni, G., Bersani, H., Borthwick-Duffy, S., Spreat, S., Thissen, D., Widaman, K. y Zhang, D. (2012). The construct...
  • Taylor, A. (2013). «Lives Worth Living»: Theorizing moral status and expressions of human life. Disability Studies Quarterly, 33(4). https://doi.org/10.18061/dsq.v33i4.3875
  • Thalen, M., Van Oorsouw, W., Volkers, K. y Embregts, P. (2023). Support needs of older people with intellectual disabilities: An exploratory...
  • Tricco, A. C., Lillie, E., Zarin, W., O’Brien, K. K., Colquhoun, H., Levac, D., Moher, D., Peters, M. D. J., Horsley, T., Weeks, L., Hempel,...
  • Tronto, J. (2024). Desafíos para crear una democracia cuidadora. En D. Alegría y L. Vivaldi Macho (Eds.), Reflexiones feministas sobre los...
  • Tyrer, F., Kiani, R. y Rutherford, M. J. (2021). Mortality, predictors and causes among people with intellectual disabilities: A systematic...
  • Union of Physically Impaired Against Segregation (UPIAS). (1981). Disability Challenge UPIAS.
  • Vega-Córdova, V., Álvarez-Aguado, I., Carrasco, P., González-Carrasco, F., Exss, K., Jarpa, M. y Spencer González, H. (2021). Expertos por...
  • Walker, C. (2015). Ageing and people with learning disabilities: In search of evidence. British Journal of Learning Disabilities, 43(4), 246-253....
  • Wallace, E. R., Harp, J. P., Van Pelt, K. L., Koehl, L. M., Caban-Holt, A. M., Anderson-Mooney, A. J., Jicha, G. A., Lightner, D. D., Robertson,...
  • Walmsley, J., Strnadová, I. y Johnson, K. (2018). The added value of inclusive research. Journal of Applied Research in Intellectual Disabilities,...
  • Wark, S., Canon-Vanry, M., Ryan, P., Hussain, R., Knox, M., Edwards, M., Parmenter, M., Parmenter, T., Janicki, M. y Leggatt-Cook, C. (2015)....
  • Wark, S., Hussain, R. y Edwards, H. (2013). Rural and remote area service provision for people aging with intellectual disability. Journal...
  • Wark, S., Hussain, R. y Edwards, H. (2014a). Impediments to community-based care for people ageing with intellectual disability in rural New...
  • Wark, S., Hussain, R. y Edwards, H. (2014b). The training needs of staff supporting individuals ageing with intellectual disability. Journal...
  • Wicki, M. T. y Riese, F. (2016). Prevalence of dementia and organization of dementia care in Swiss disability care homes. Disability and Health...
  • Wiese, M., Stancliffe, R. J., Balandin, S., Howarth, G. y Dew, A. (2012). End-of-life care and dying: Issues raised by staff supporting older...