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<article article-type="research-article" dtd-version="1.1" specific-use="sps-1.9" xml:lang="es" xmlns:mml="http://www.w3.org/1998/Math/MathML" xmlns:xlink="http://www.w3.org/1999/xlink">
<front>
<journal-meta>
<journal-id journal-id-type="publisher-id">scero</journal-id>
<journal-title-group>
<journal-title>Siglo Cero Revista Espa&#x00F1;ola sobre Discapacidad Intelectual</journal-title>
<abbrev-journal-title abbrev-type="publisher">scero</abbrev-journal-title>
</journal-title-group>
<issn pub-type="ppub">0210-1696</issn>
<issn pub-type="epub">2530-0350</issn>
<publisher>
<publisher-name>Universidad de Salamanca</publisher-name>
</publisher>
</journal-meta>
<article-meta>
<article-id pub-id-type="publisher-id">scero.32498</article-id>
<article-id pub-id-type="doi">10.14201/scero.32498</article-id>
<article-categories>
<subj-group subj-group-type="heading">
<subject>Art&#x00ED;culos y experiencias</subject>
</subj-group>
</article-categories>
<title-group>
<article-title>Perspectivas del cuidado en personas con discapacidad intelectual que envejecen: una revisi&#x00F3;n sistem&#x00E1;tica</article-title>
<trans-title-group>
<trans-title xml:lang="en">Care Perspectives in Aging People with Intellectual Disabilities: A Systematic Review</trans-title>
</trans-title-group>
</title-group>
<contrib-group>
<contrib contrib-type="author" corresp="yes">
<contrib-id contrib-id-type="orcid">https://orcid.org/0000-0001-7487-0154</contrib-id>
<name>
<surname>Gonz&#x00E1;lez-Carrasco</surname>
<given-names>F&#x00E9;lix</given-names>
</name>
<email>felix.gonzalez@pucv.cl</email>
<xref ref-type="aff" rid="aff1"/>
<xref ref-type="corresp" rid="c1"><sup>1</sup></xref>
</contrib>
<contrib contrib-type="author">
<contrib-id contrib-id-type="orcid">https://orcid.org/0000-0002-8021-525X</contrib-id>
<name>
<surname>&#x00C1;lvarez-Aguado</surname>
<given-names>Izaskun</given-names>
</name>
<email>ialvareza@udla.cl</email>
<xref ref-type="aff" rid="aff2"/>
</contrib>
<contrib contrib-type="author">
<contrib-id contrib-id-type="orcid">https://orcid.org/0000-0003-3333-4798</contrib-id>
<name>
<surname>Vega-C&#x00F3;rdova</surname>
<given-names>Vanessa</given-names>
</name>
<email>vanessa.vega@pucv.cl</email>
<xref ref-type="aff" rid="aff1"/>
</contrib>
<aff id="aff1">
<institution content-type="original">Pontificia Universidad Cat&#x00F3;lica de Valpara&#x00ED;so y Millennium Institute for Care Research (MICARE). Chile</institution>
<institution content-type="orgname">Pontificia Universidad Cat&#x00F3;lica de Valpara&#x00ED;so y Millennium Institute for Care Research (MICARE)</institution>
<country country="CL">Chile</country>
</aff>
<aff id="aff2">
    <institution content-type="original">Universidad de las Am&#x00E9;ricas y Millennium Institute for Care Research (MICARE). Chile</institution>
    <institution content-type="orgname">Universidad de las Am&#x00E9;ricas y Millennium Institute for Care Research (MICARE)</institution>
<country country="CL">Chile</country>
</aff>
</contrib-group>
<author-notes>
<corresp id="c1"><label>1</label> Autora de correspondencia.</corresp>
</author-notes>
<pub-date publication-format="electronic" date-type="pub">
<day>31</day>
<month>03</month>
<year>2026</year>
</pub-date>
<pub-date publication-format="electronic" date-type="collection">
<year>2026</year>
</pub-date>
<volume>57</volume>
<issue>1</issue>
<issue-id pub-id-type="doi">10.14201/scero2026571</issue-id>
<fpage>171</fpage>
<lpage>190</lpage>
<history>
<date date-type="received">
<day>17</day>
<month>02</month>
<year>2025</year>
</date>
<date date-type="accepted">
<day>16</day>
<month>06</month>
<year>2025</year>
</date>
</history>
<permissions>
<copyright-statement>&#x00A9; 2026 Autores/Authors</copyright-statement>
<copyright-year>2026</copyright-year>
<license license-type="open-access" xlink:href="https://creativecommons.org/licenses/by-nc-sa/4.0/" xml:lang="es">
<license-p>Este obra est&#x00E1; bajo una licencia de Attribution-NonCommercial-ShareAlike 4.0 International (CC BY-NC-SA 4.0).</license-p>
</license>
</permissions>
<abstract>
<title>R<sc>esumen</sc>:</title>
<p>Las personas con discapacidad intelectual est&#x00E1;n envejeciendo y alcanzando edades que superan registros de otras &#x00E9;pocas. Las pr&#x00E1;cticas de cuidado marcan esta trayectoria y su comprensi&#x00F3;n sigue siendo limitada. Este art&#x00ED;culo presenta una revisi&#x00F3;n sistem&#x00E1;tica de alcance sobre perspectivas del cuidado en el envejecimiento de personas con discapacidad intelectual, analizando 96 art&#x00ED;culos de un total de 1.445. Se realiz&#x00F3; un an&#x00E1;lisis tem&#x00E1;tico y de correspondencias m&#x00FA;ltiples que favoreci&#x00F3; la organizaci&#x00F3;n de la informaci&#x00F3;n y la descripci&#x00F3;n de resultados. Los resultados se organizaron con base en cuatro tem&#x00E1;ticas: Programas y servicios de apoyo, Salud y morbilidad, Familia y hogares y Percepci&#x00F3;n del envejecimiento. Los an&#x00E1;lisis describen los elementos m&#x00E1;s relevantes identificados, adem&#x00E1;s de destacar brechas y temas urgentes relacionados con el cuidado de personas con discapacidad intelectual que envejecen. Esta revisi&#x00F3;n identific&#x00F3; diversas brechas respecto a c&#x00F3;mo se est&#x00E1; conceptualizando e investigando el cuidado con personas con discapacidad intelectual que envejecen. Se sostiene la necesidad de ampliar la perspectiva de las investigaciones con relaci&#x00F3;n al cuidado, que represente necesidades y derechos leg&#x00ED;timos del envejecimiento de personas con discapacidad intelectual.</p>
</abstract>
<trans-abstract xml:lang="en">
<title>A<sc>bstract</sc>:</title>
<p>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.</p>
</trans-abstract>
<kwd-group xml:lang="es">
<title>P<sc>alabras clave</sc>:</title>
<kwd>Envejecimiento</kwd>
<kwd>cuidados</kwd>
<kwd>discapacidad intelectual</kwd>
<kwd>conceptualizaci&#x00F3;n del cuidado</kwd>
</kwd-group>
<kwd-group xml:lang="en">
<title>K<sc>eywords</sc>:</title>
<kwd>Aging</kwd>
<kwd>care</kwd>
<kwd>intellectual disability</kwd>
<kwd>conceptualization of care</kwd>
</kwd-group>
<funding-group>
<award-group>
<funding-source>
<institution-wrap>
<institution>Este trabajo fue apoyado por la Agencia Nacional de Investigaci&#x00F3;n y Desarrollo (ANID), Chile, Doctorado Nacional n.&#x00B0; 21221540, MILENIO ICS2019_024 y ANID-FONDECYT n.&#x00BA; 11230525</institution>
</institution-wrap>
</funding-source>
<award-id>Doctorado Nacional n.&#x00B0; 21221540</award-id>
<award-id>MILENIO ICS2019_024</award-id>
<award-id>ANID-FONDECYT n.&#x00BA; 11230525</award-id>
</award-group>
<funding-statement>Este trabajo fue apoyado por la Agencia Nacional de Investigaci&#x00F3;n y Desarrollo (ANID), Chile, Doctorado Nacional n.&#x00B0; 21221540, MILENIO ICS2019_024 y ANID-FONDECYT n.&#x00BA; 11230525</funding-statement>
</funding-group>
</article-meta>
</front>
<body>
<sec id="sec-1-32498">
<label>1.</label>
<title>Introducci&#x00F3;n</title>
<p>El envejecimiento es un proceso multidimensional que afecta la salud f&#x00ED;sica, social y emocional de las personas, estando influenciado por valoraciones culturales y contextos hist&#x00F3;ricos y pol&#x00ED;ticos (<xref ref-type="bibr" rid="ref-69-32498">Pi&#x00F1;a Mor&#x00E1;n <italic>et al</italic>., 2022</xref>). A nivel global, la esperanza de vida supera los 60 a&#x00F1;os, y se proyecta que el n&#x00FA;mero de personas mayores de 80 se triplicar&#x00E1; hasta alcanzar 426 millones en 2050 (<xref ref-type="bibr" rid="ref-66-32498">Organizaci&#x00F3;n Mundial de la Salud, 2022</xref>). Sin embargo, las personas con discapacidad intelectual presentan una esperanza de vida menor que la poblaci&#x00F3;n general, con diferencias que pueden llegar a 20 a&#x00F1;os en el caso de las mujeres (<xref ref-type="bibr" rid="ref-37-32498">Heslop <italic>et al</italic>., 2014</xref>, <xref ref-type="bibr" rid="ref-38-32498">2022</xref>); esto repercute de manera decisiva en la calidad de su cuidado y pone de manifiesto una vulnerabilidad frente a causas de muerte que podr&#x00ED;an prevenirse (<xref ref-type="bibr" rid="ref-39-32498">Heslop y Hoghton, 2019</xref>; <xref ref-type="bibr" rid="ref-92-32498">Tyrer <italic>et al</italic>., 2021</xref>).</p>
<p>Estas disparidades trascienden el impedimento biol&#x00F3;gico, pues la discapacidad se configura tambi&#x00E9;n como un fen&#x00F3;meno social que impone barreras y restringe la vida (<xref ref-type="bibr" rid="ref-64-32498">Oliver, 1998</xref>; <xref ref-type="bibr" rid="ref-81-32498">Shakespeare, 2016</xref>; <xref ref-type="bibr" rid="ref-93-32498">Union of Physically Impaired Against Segregation [UPIAS], 1981</xref>). En este sentido, la conceptualizaci&#x00F3;n de la discapacidad intelectual destaca las limitaciones en el funcionamiento intelectual y la conducta adaptativa en los &#x00E1;mbitos conceptual, social y pr&#x00E1;ctico (<xref ref-type="bibr" rid="ref-4-32498">American Psychiatric Association, 2013</xref>; <xref ref-type="bibr" rid="ref-79-32498">Schalock <italic>et al</italic>., 2021</xref>). Este enfoque facilita la formulaci&#x00F3;n de diagn&#x00F3;sticos, la identificaci&#x00F3;n de riesgos y la generaci&#x00F3;n de apoyos y servicios ad-hoc para resguardar los derechos de las personas con discapacidad (<xref ref-type="bibr" rid="ref-31-32498">G&#x00F3;mez <italic>et al</italic>., 2021</xref>; <xref ref-type="bibr" rid="ref-79-32498">Schalock <italic>et al</italic>., 2021</xref>).</p>
<p>Diversos estudios han identificado caracter&#x00ED;sticas comunes en el envejecimiento de esta poblaci&#x00F3;n, como problemas cardiovasculares, endocrinos, p&#x00E9;rdida de audici&#x00F3;n, diabetes, obesidad y afecciones respiratorias (<xref ref-type="bibr" rid="ref-35-32498">Hahn, 2012</xref>; <xref ref-type="bibr" rid="ref-36-32498">Hahn y Aronow, 2005</xref>), as&#x00ED; como una alta prevalencia de demencia, depresi&#x00F3;n y ansiedad (<xref ref-type="bibr" rid="ref-50-32498">Lin <italic>et al</italic>., 2016</xref>; <xref ref-type="bibr" rid="ref-53-32498">Lougheed, 2019</xref>). A pesar de los avances en servicios de cuidado, programas sociales y transformaciones culturales que han contribuido a mayores longevidades (<xref ref-type="bibr" rid="ref-75-32498">Roll y Kurtzahn, 2024</xref>), el envejecimiento en este grupo suele estar marcado por trayectorias de fragilidad vinculadas a la pobreza, problemas de salud, estilos de vida poco saludables y exclusiones en &#x00E1;mbitos econ&#x00F3;micos, educativos y sociales (<xref ref-type="bibr" rid="ref-1-32498">Adam <italic>et al</italic>., 2020</xref>; <xref ref-type="bibr" rid="ref-10-32498">Bigby <italic>et al</italic>., 2014</xref>).</p>
<p>Las desigualdades persistentes evidencian la necesidad de repensar el cuidado de forma integral. Aunque el cuidado es un componente esencial de la vida (<xref ref-type="bibr" rid="ref-91-32498">Tronto, 2024</xref>), en el &#x00E1;mbito de la discapacidad los enfoques tradicionales limitan la toma de decisiones, la independencia y la autonom&#x00ED;a, posicionando a las personas con discapacidad intelectual como sujetos pol&#x00ED;ticos marginados en una sociedad de cuidados en crisis (<xref ref-type="bibr" rid="ref-52-32498">Lluch, 2018</xref>; <xref ref-type="bibr" rid="ref-72-32498">Revuelta, 2019</xref>; <xref ref-type="bibr" rid="ref-73-32498">Revuelta y Hern&#x00E1;ndez, 2021</xref>). Frente a este escenario, las perspectivas de interdependencia invitan a replantear la &#x00E9;tica del cuidado, ampliando la comprensi&#x00F3;n de las necesidades y apoyos para vivir en igualdad y sin discriminaci&#x00F3;n (<xref ref-type="bibr" rid="ref-32-32498">Gonz&#x00E1;lez-Carrasco <italic>et al</italic>., 2025</xref>; <xref ref-type="bibr" rid="ref-68-32498">Pi&#x00E9; Balaguer, 2018</xref>; <xref ref-type="bibr" rid="ref-74-32498">Riu, 2012</xref>).</p>
<p>En el marco de la discapacidad intelectual, el cuidado se conceptualiza a partir de la provisi&#x00F3;n de apoyos que buscan reducir brechas, promover la participaci&#x00F3;n y salvaguardar los derechos (<xref ref-type="bibr" rid="ref-61-32498">Naciones Unidas, 2006</xref>; <xref ref-type="bibr" rid="ref-78-32498">Schalock, 2009</xref>; <xref ref-type="bibr" rid="ref-79-32498">Schalock <italic>et al</italic>., 2021</xref>). Las acciones de cuidado se entienden como parte integral de la conducta adaptativa, considerando tanto el contexto social y conceptual como las expectativas del entorno (<xref ref-type="bibr" rid="ref-79-32498">Schalock <italic>et al</italic>., 2021</xref>; <xref ref-type="bibr" rid="ref-87-32498">Tass&#x00E9; <italic>et al</italic>., 2012</xref>).</p>
<p>Las revisiones sistem&#x00E1;ticas en este campo han evidenciado una alta prevalencia de demencia, especialmente en servicios psiqui&#x00E1;tricos, as&#x00ED; como problemas de polifarmacia y sobrecarga en los cuidadores, lo que subraya la necesidad de fortalecer los servicios de salud para un envejecimiento saludable (<xref ref-type="bibr" rid="ref-49-32498">Lin y Lin, 2021</xref>; <xref ref-type="bibr" rid="ref-53-32498">Lougheed, 2019</xref>). En el &#x00E1;mbito del cuidado familiar, la falta de apoyos adecuados y la delegaci&#x00F3;n de responsabilidades sin el respaldo necesario generan desaf&#x00ED;os que requieren una planificaci&#x00F3;n efectiva (<xref ref-type="bibr" rid="ref-11-32498">Brennan <italic>et al</italic>., 2020</xref>; <xref ref-type="bibr" rid="ref-76-32498">Ryan <italic>et al</italic>., 2014</xref>). Algunos estudios destacan c&#x00F3;mo el modelo di&#x00E1;dico de cuidados informales normaliza la sobrecarga familiar y desv&#x00ED;a la atenci&#x00F3;n de los servicios especializados, lo que resalta la importancia de fomentar la vida independiente con apoyo (<xref ref-type="bibr" rid="ref-30-32498">Garnham <italic>et al</italic>., 2019</xref>).</p>
<p>Una revisi&#x00F3;n m&#x00E1;s amplia identifica desaf&#x00ED;os estructurales en la provisi&#x00F3;n de servicios, la planificaci&#x00F3;n y la intervenci&#x00F3;n comunitaria, adem&#x00E1;s de se&#x00F1;alar la escasez de estudios que aborden de forma integral el cuidado de las personas con discapacidad intelectual al envejecer (<xref ref-type="bibr" rid="ref-43-32498">Innes <italic>et al.</italic>, 2012</xref>). Pese a estos aportes, la literatura sigue presentando importantes vac&#x00ED;os y una fragmentaci&#x00F3;n conceptual en torno al cuidado en la vejez, lo que dificulta una comprensi&#x00F3;n integral del fen&#x00F3;meno y de sus implicaciones en el envejecimiento de esta poblaci&#x00F3;n. En este contexto, el objetivo de este art&#x00ED;culo es presentar una revisi&#x00F3;n sistem&#x00E1;tica de alcance, siguiendo el modelo PRISMA (<xref ref-type="bibr" rid="ref-90-32498">Tricco <italic>et al</italic>., 2018</xref>), que permita comprender c&#x00F3;mo se aborda el cuidado en el envejecimiento de las personas con discapacidad intelectual e identificar prioridades y brechas en la investigaci&#x00F3;n actual.</p>
</sec>
<sec id="sec-2-32498">
<label>2.</label>
<title>Metodolog&#x00ED;a</title>
<p>Esta revisi&#x00F3;n sistem&#x00E1;tica de alcance se realiz&#x00F3; siguiendo el modelo PRISMA-ScR (Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews), que permite identificar conceptos clave, teor&#x00ED;as y vac&#x00ED;os de conocimiento, y cuenta con criterios de verificaci&#x00F3;n para difundir hallazgos y fomentar una comprensi&#x00F3;n actualizada que aporte al desarrollo de pol&#x00ED;ticas p&#x00FA;blicas, investigaci&#x00F3;n e iniciativas colectivas (<xref ref-type="bibr" rid="ref-90-32498">Tricco <italic>et al</italic>., 2018</xref>).</p>
<p>Para la sistematizaci&#x00F3;n de la informaci&#x00F3;n se adoptaron las recomendaciones de <xref ref-type="bibr" rid="ref-6-32498">Arksey y O&#x2019;Malley (2005)</xref> y <xref ref-type="bibr" rid="ref-48-32498">Levac <italic>et al</italic>. (2010)</xref>, que incluyen identificar la pregunta de investigaci&#x00F3;n, buscar y seleccionar estudios, organizar los datos y construir la tem&#x00E1;tica. Esta revisi&#x00F3;n se orient&#x00F3; en torno a dos preguntas de investigaci&#x00F3;n: &#x00BF;cu&#x00E1;les son los enfoques desde los que se estudia el cuidado en personas con discapacidad intelectual que envejecen? y &#x00BF;qu&#x00E9; desaf&#x00ED;os plantean los hallazgos y conclusiones respecto a su cuidado?</p>
<p>La b&#x00FA;squeda se realiz&#x00F3; en las bases de datos Web of Science, Scopus, Pubmed, Scielo, Eric, Erih-Plus y Science Direct en abril de 2024. Se emplearon palabras clave basadas (<xref ref-type="table" rid="tabw-1-32498">Tabla 1</xref>) en los conceptos de la pregunta de investigaci&#x00F3;n para guiar la b&#x00FA;squeda, sin considerar fechas de corte.</p>
<table-wrap id="tabw-1-32498">
<label>T<sc>abla</sc> 1.</label>
<caption><title>Registros identificados a trav&#x00E9;s de b&#x00FA;squedas en bases de datos</title></caption>
<table id="tab-1-32498" frame="box" border="1" rules="all">
<col width="40%"/>
<col width="40%"/>
<col width="20%"/>
<thead>
<tr>
<th valign="top" align="left"><p><bold>Descriptores de b&#x00FA;squeda</bold></p></th>
<th valign="top" align="left"><p><bold>Base de datos</bold></p></th>
<th valign="top" align="left"><p><bold>Registros</bold></p></th>
</tr>
</thead>
<tbody>
<tr>
<td valign="top" align="left" rowspan="10"><p><italic>Salud:</italic> aging AND &#x201C;intellectual disabilit*&#x201D; AND health AND care.</p>
<p><italic>Apoyos:</italic> aging AND &#x201C;intellectual disabilit*&#x201D; AND support AND care</p>
<p><italic>Independencia y derechos:</italic> aging AND &#x201C;intellectual disabilit*&#x201D; AND independence AND care; aging AND &#x201C;intellectual disabilit*&#x201D; AND rights AND care.</p>
<p><italic>Otras perspectivas del cuidado:</italic> aging AND &#x201C;intellectual disabilit*&#x201D; AND care; aging AND &#x201C;intellectual disabilit*&#x201D; AND care AND well-being.</p></td>
<td valign="top" align="left"><p>WEB OF SCIENCE</p></td>
<td valign="top" align="left"><p>180</p></td>
</tr>
<tr>
<td valign="top" align="left"><p>SCOPUS</p></td>
<td valign="top" align="left"><p>573</p></td>
</tr>
<tr>
<td valign="top" align="left"><p>PUBMED</p></td>
<td valign="top" align="left"><p>149</p></td>
</tr>
<tr>
<td valign="top" align="left"><p>SCIELO</p></td>
<td valign="top" align="left"><p>6</p></td>
</tr>
<tr>
<td valign="top" align="left"><p>ERIC</p></td>
<td valign="top" align="left"><p>134</p></td>
</tr>
<tr>
<td valign="top" align="left"><p>ERIH-PLUS</p></td>
<td valign="top" align="left"><p>99</p></td>
</tr>
<tr>
<td valign="top" align="left"><p>SCIENCE DIRECT</p></td>
<td valign="top" align="left"><p>304</p></td>
</tr>
<tr>
<td valign="top" align="left"><p><bold>TOTAL (incluye duplicados)</bold></p></td>
<td valign="top" align="left"><p><bold>1445</bold></p></td>
</tr>
<tr>
<td valign="top" align="left"><p><bold>TOTAL (excluye duplicados)</bold></p></td>
<td valign="top" align="left"><p><bold>955</bold></p></td>
</tr>
<tr>
<td valign="top" align="left"><p><bold>Excluidos</bold></p></td>
<td valign="top" align="left"><p><bold>490</bold></p></td>
</tr>
</tbody>
</table>
<table-wrap-foot>
<attrib>Fuente: Elaboraci&#x00F3;n propia.</attrib>
</table-wrap-foot>
</table-wrap>
<p>Se utilizaron los softwares Rayyan y Zotero para gestionar el <italic>screening</italic>, incluyendo 96 art&#x00ED;culos en el an&#x00E1;lisis final, como se muestra en la <xref ref-type="fig" rid="fig-1-32498">Figura 1</xref>. Como criterio de fiabilidad, se emple&#x00F3; un procedimiento de validaci&#x00F3;n interjueces aplicado a t&#x00ED;tulos y res&#x00FA;menes seleccionados aleatoriamente. En una primera ronda de codificaci&#x00F3;n se obtuvo un coeficiente alfa de Krippendorff de 0.567, valor que se considera insuficiente para asegurar la consistencia del proceso. A partir de este resultado, se realizaron ajustes en los criterios de selecci&#x00F3;n, alcanz&#x00E1;ndose en una segunda ronda un alfa de 0.717, lo cual se considera un nivel satisfactorio de acuerdo (<xref ref-type="bibr" rid="ref-56-32498">Marzi <italic>et al</italic>., 2024</xref>).</p>
<fig id="fig-1-32498">
<label>Figura 1.</label>
<caption><title>Diagrama del proceso de selecci&#x00F3;n y revisi&#x00F3;n de art&#x00ED;culos</title></caption>
<graphic xmlns:xlink="http://www.w3.org/1999/xlink" xlink:href="fig-1-32498.jpg"/>
<attrib>Fuente: Elaboraci&#x00F3;n propia.</attrib>
</fig>
<p>La revisi&#x00F3;n incluy&#x00F3; publicaciones sobre el cuidado y el envejecimiento en discapacidad intelectual. Se excluyeron art&#x00ED;culos sin acceso en ingl&#x00E9;s o espa&#x00F1;ol, <italic>conference proceedings</italic>, libros, tesis, <italic>preprints</italic>, revisiones generales y sistem&#x00E1;ticas, as&#x00ED; como aquellos que no abordaran la discapacidad intelectual. Se consider&#x00F3; el periodo 1990 al 2024. El an&#x00E1;lisis comenz&#x00F3; con una codificaci&#x00F3;n deductiva y agrupaci&#x00F3;n de 96 art&#x00ED;culos, utilizando categor&#x00ED;as basadas en <xref ref-type="bibr" rid="ref-43-32498">Innes <italic>et al.</italic> (2012)</xref>, que permitieron conformar 4 grupos principales de c&#x00F3;digos, descritos a continuaci&#x00F3;n (<xref ref-type="table" rid="tabw-2-32498">Tabla 2</xref>).</p>
<table-wrap id="tabw-2-32498">
<label>T<sc>abla</sc> 2.</label>
<caption><title>Codificaci&#x00F3;n principal de temas</title></caption>
<table id="tab-2-32498" frame="box" border="1" rules="all">
<col width="50%"/>
<col width="50%"/>
<thead>
<tr>
<th valign="top" align="center"><p>C&#x00F3;digo</p></th>
<th valign="top" align="center"><p>Descripci&#x00F3;n del tipo de investigaci&#x00F3;n</p></th>
</tr>
</thead>
<tbody>
<tr>
<td valign="top" align="left"><p>Programas y servicios de apoyo</p></td>
<td valign="top" align="left"><p>Experiencias de servicios, programas sociales y/o entidades que generan pr&#x00E1;cticas de apoyo en el cuidado. Las pr&#x00E1;cticas tienen relaci&#x00F3;n con experiencias de profesionales y equipos especializados en entregar cuidados a personas que envejecen, as&#x00ED; como an&#x00E1;lisis de programas o servicios.</p></td>
</tr>
<tr>
<td valign="top" align="left"><p>Salud y morbilidad</p></td>
<td valign="top" align="left"><p>Condiciones de bienestar, prevalencia, condiciones cr&#x00F3;nicas, as&#x00ED; como el impacto de una enfermedad, en el cuidado de una persona con discapacidad intelectual que envejece.</p></td>
</tr>
<tr>
<td valign="top" align="left"><p>Familia y hogares</p></td>
<td valign="top" align="left"><p>Roles, funciones, modos de vivir o convivir, as&#x00ED; como los v&#x00ED;nculos que generan las personas y su v&#x00ED;nculo con el cuidado al envejecer.</p></td>
</tr>
<tr>
<td valign="top" align="left"><p>Percepci&#x00F3;n del envejecimiento</p></td>
<td valign="top" align="left"><p>Perspectiva biogr&#x00E1;fica, narrativa y/o subjetiva, con un &#x00E9;nfasis anal&#x00ED;tico en el sujeto y sus implicancias en la vida y el cuidado que supone al envejecer.</p></td>
</tr>
</tbody>
</table>
<table-wrap-foot>
<attrib>Fuente: Elaboraci&#x00F3;n propia.</attrib>
</table-wrap-foot>
</table-wrap>
<p>Esta primera codificaci&#x00F3;n permiti&#x00F3; la elaboraci&#x00F3;n de un an&#x00E1;lisis tem&#x00E1;tico organizado en subtemas (n = 9) y hallazgos (n = 16). El an&#x00E1;lisis de la literatura se realiz&#x00F3; con base en un an&#x00E1;lisis tem&#x00E1;tico para sintetizar los datos, con apoyo del software atlasti. Con el prop&#x00F3;sito de organizar la descripci&#x00F3;n de resultados y facilitar la interpretaci&#x00F3;n de los temas de esta revisi&#x00F3;n, se elabor&#x00F3; un an&#x00E1;lisis de correspondencias m&#x00FA;ltiples (ACM) con base en la subcategorizaci&#x00F3;n de subtemas y hallazgos. El an&#x00E1;lisis de correspondencia m&#x00FA;ltiple (ACM) es una herramienta estad&#x00ED;stica que permite explorar y representar visualmente la relaci&#x00F3;n entre distintas categor&#x00ED;as de variables. Esta t&#x00E9;cnica ayuda a resumir y organizar la informaci&#x00F3;n en un gr&#x00E1;fico bidimensional, facilitando la interpretaci&#x00F3;n de patrones y asociaciones (<xref ref-type="bibr" rid="ref-34-32498">Greenacre, 2017</xref>). Para este estudio, el an&#x00E1;lisis se llev&#x00F3; a cabo utilizando el paquete FactoMineR en el software RStudio (<xref ref-type="bibr" rid="ref-47-32498">L&#x00EA; <italic>et al</italic>., 2008</xref>).</p>
<p>La interpretaci&#x00F3;n del gr&#x00E1;fico resultante (<xref ref-type="fig" rid="fig-2-32498">Figura 2</xref>), tambi&#x00E9;n conocido como mapa perceptual, se realiz&#x00F3; observando la posici&#x00F3;n y la proximidad de las categor&#x00ED;as dentro del espacio gr&#x00E1;fico. Este mapa organiza la informaci&#x00F3;n en dos dimensiones principales (Dim 1 y Dim 2), las cuales permiten identificar agrupaciones de categor&#x00ED;as con caracter&#x00ED;sticas similares. Para facilitar la lectura del gr&#x00E1;fico, se aplic&#x00F3; una t&#x00E9;cnica llamada <italic>habillage</italic>, que permite agrupar visualmente categor&#x00ED;as que comparten perfiles parecidos. A diferencia de otros an&#x00E1;lisis m&#x00E1;s conocidos, como el de correspondencia simple, el ACM no explica una gran proporci&#x00F3;n de la variabilidad total del conjunto de datos (en este caso, Dim 1 explica un 22.3 % y Dim 2 un 15.9 %). Sin embargo, es muy &#x00FA;til para identificar perfiles o patrones comunes que luego pueden ser descritos e interpretados con mayor profundidad (<xref ref-type="bibr" rid="ref-21-32498">D&#x00ED;az Monroy <italic>et al</italic>., 2018</xref>).</p>
<fig id="fig-2-32498">
<label>Figura 2.</label>
<caption><title>Mapa perceptual de categor&#x00ED;as relevantes para an&#x00E1;lisis de la revisi&#x00F3;n</title></caption>
<graphic xmlns:xlink="http://www.w3.org/1999/xlink" xlink:href="fig-2-32498.jpg"/>
<attrib>Fuente: Elaboraci&#x00F3;n propia.</attrib>
</fig>
</sec>
<sec id="sec-3-32498">
<label>3.</label>
<title>Resultados</title>
<p>Las investigaciones incluidas fueron publicadas entre los a&#x00F1;os 1990 y 2024, evidenciando un aumento gradual en la producci&#x00F3;n cient&#x00ED;fica de un 16.7 % (n = 16) entre 1990-2006, un 36.4 % (n = 35) entre 2008-2015 y un 46.9 % (n = 45) entre 2016-2024. En cuanto al dise&#x00F1;o metodol&#x00F3;gico, el 58.9 % (n = 5 6) corresponde a estudios cualitativos, el 32.3 % (n = 31) a cuantitativos y un 9.5 % (n = 9) a investigaciones de tipo mixto. Las tem&#x00E1;ticas abordadas se distribuyen de la siguiente manera: Programas y servicios de apoyo (39.6 %, n = 38), Salud y morbilidad (24 %, n = 23), Familia y hogares (26 %, n = 25) y Percepci&#x00F3;n del envejecimiento (10.4 %, n = 10). A continuaci&#x00F3;n, se presenta la <xref ref-type="table" rid="tabw-3-32498">Tabla 3</xref>, que describe la organizaci&#x00F3;n de los estudios que contempla la revisi&#x00F3;n.</p>
<table-wrap id="tabw-3-32498">
<label>T<sc>abla</sc> 3.</label>
<caption><title>Organizaci&#x00F3;n de los art&#x00ED;culos seg&#x00FA;n tem&#x00E1;tica general</title></caption>
<table id="tab-3-32498" frame="box" border="1" rules="all">
<col width="30%"/>
<col width="70%"/>
<thead>
<tr>
<th valign="top" align="left"><p>Tem&#x00E1;tica</p></th>
<th valign="top" align="left"><p>Autores</p></th>
</tr>
</thead>
<tbody>
<tr>
<td valign="top" align="left"><p>Salud</p>
<p>y</p>
<p>morbilidad</p></td>
<td valign="top" align="left"><p><xref ref-type="bibr" rid="ref-7-32498">Axmon <italic>et al</italic>., 2019</xref>; Carmeli y Merrick, 2010; Carmeli <italic>et al</italic>., 2003; de Winter <italic>et al</italic>., 2013; Hahn, 2014; <xref ref-type="bibr" rid="ref-36-32498">Hahn <italic>et al</italic>., 2005</xref>; <xref ref-type="bibr" rid="ref-41-32498">Hussain <italic>et al</italic>., 2021</xref>; Iacono <italic>et al</italic>., 2014; Kandel <italic>et al</italic>., 2009; Kim <italic>et al</italic>., 2022; <xref ref-type="bibr" rid="ref-51-32498">Lin <italic>et al</italic>., 2011</xref>; <xref ref-type="bibr" rid="ref-57-32498">Matos <italic>et al</italic>., 2015</xref>; Merrick <italic>et al</italic>., 2006; Mill&#x00E1;n-Calenti <italic>et al</italic>., 2003; <xref ref-type="bibr" rid="ref-60-32498">Mill&#x00E1;n-Calenti <italic>et al</italic>., 2006</xref>; Oppewal <italic>et al</italic>., 2015; Pendl <italic>et al</italic>., 2024; Salomon <italic>et al</italic>., 2019; <xref ref-type="bibr" rid="ref-83-32498">Shooshtari <italic>et al</italic>., 2017</xref>; Thalen <italic>et al</italic>., 2021; Webber <italic>et al</italic>., 2016; <xref ref-type="bibr" rid="ref-102-32498">Wicki y Riese, 2016</xref>; Wiese <italic>et al</italic>., 2013</p></td>
</tr>
<tr>
<td valign="top" align="left"><p>Programas</p>
<p>y</p>
<p>servicios</p>
<p>de apoyo</p></td>
<td valign="top" align="left"><p><xref ref-type="bibr" rid="ref-2-32498">Ahlstr&#x00F6;m <italic>et al</italic>., 2022</xref>; <xref ref-type="bibr" rid="ref-3-32498">Alftberg <italic>et al</italic>., 2021</xref>; <xref ref-type="bibr" rid="ref-5-32498">Araten-Bergman <italic>et al</italic>., 2024</xref>; Bauer <italic>et al</italic>., 2017; Bigby <italic>et al</italic>., 2008; Coyle <italic>et al</italic>., 2016; Doody <italic>et al</italic>., 2011; <xref ref-type="bibr" rid="ref-24-32498">Dusart, 2018</xref>; Eley <italic>et al</italic>., 2009; <xref ref-type="bibr" rid="ref-29-32498">Forrester-Jones <italic>et al</italic>., 2017</xref>; Gething, 2000; Gibson <italic>et al</italic>., 1992; Hand, 1994; Hawkins y Eklund, 1990; Hsu <italic>et al</italic>., 2012; <xref ref-type="bibr" rid="ref-40-32498">Hussain <italic>et al.</italic>, 2019</xref>; Iacono <italic>et al</italic>., 2013; Janicki <italic>et al</italic>., 2010; <xref ref-type="bibr" rid="ref-44-32498">Johansson <italic>et al</italic>., 2017</xref>; Kruse y Ding-Greiner, 2003; <xref ref-type="bibr" rid="ref-58-32498">McCausland <italic>et al</italic>., 2021</xref>; <xref ref-type="bibr" rid="ref-63-32498">Northway <italic>et al</italic>., 2017</xref>; Oppewal <italic>et al</italic>., 2016; <xref ref-type="bibr" rid="ref-70-32498">Read y Cartlidge, 2012</xref>; Sandberg <italic>et al</italic>., 2016; <xref ref-type="bibr" rid="ref-80-32498">Schiettecat <italic>et al</italic>., 2023</xref>; Strydom <italic>et al</italic>., 2005; <xref ref-type="bibr" rid="ref-89-32498">Thalen <italic>et al</italic>., 2023</xref>; Voss <italic>et al</italic>., 2023; <xref ref-type="bibr" rid="ref-99-32498">Wark <italic>et al</italic>., 2013</xref>; <xref ref-type="bibr" rid="ref-100-32498">Wark 2014a</xref>; <xref ref-type="bibr" rid="ref-101-32498">Wark <italic>et al</italic>., 2014b</xref>; Wark, 2015b; <xref ref-type="bibr" rid="ref-99-32498">Wark <italic>et al</italic>., 2017</xref>; Webber <italic>et al</italic>., 2010; <xref ref-type="bibr" rid="ref-103-32498">Wiese <italic>et al</italic>., 2012</xref>; Willis <italic>et al</italic>., 2010</p></td>
</tr>
<tr>
<td valign="top" align="left"><p>Familias</p>
<p>y</p>
<p>hogares</p></td>
<td valign="top" align="left"><p>Anderson-Kittow <italic>et al</italic>., 2023; <xref ref-type="bibr" rid="ref-9-32498">Bigby <italic>et al</italic>., 2011</xref>; <xref ref-type="bibr" rid="ref-12-32498">Brennan <italic>et al</italic>., 2018</xref>; <xref ref-type="bibr" rid="ref-14-32498">Bryant <italic>et al</italic>., 2017</xref>; <xref ref-type="bibr" rid="ref-16-32498">Byram, 2018</xref>; Carling-Jenkins <italic>et al</italic>., 2012; <xref ref-type="bibr" rid="ref-18-32498">Chou <italic>et al</italic>., 2022</xref>; <xref ref-type="bibr" rid="ref-19-32498">Coyle <italic>et al</italic>., 2014</xref>; <xref ref-type="bibr" rid="ref-27-32498">Engwall, 2017</xref>; Lin <italic>et al</italic>., 2014; <xref ref-type="bibr" rid="ref-54-32498">Low <italic>et al</italic>., 2017</xref>; Marsack-Topolewski <italic>et al.</italic>, 2023; McCausland <italic>et al</italic>., 2019; <xref ref-type="bibr" rid="ref-62-32498">Niedbalski, 2023</xref>; <xref ref-type="bibr" rid="ref-67-32498">Patti <italic>et al</italic>., 2010</xref>; <xref ref-type="bibr" rid="ref-71-32498">Reilly y Conliffe, 2002</xref>; <xref ref-type="bibr" rid="ref-75-32498">Roll y Kurtzahn, 2024</xref>; <xref ref-type="bibr" rid="ref-82-32498">Shaw <italic>et al</italic>., 2011</xref>; <xref ref-type="bibr" rid="ref-84-32498">Shrestha y Weber, 2002</xref>; <xref ref-type="bibr" rid="ref-85-32498">Spassiani <italic>et al</italic>., 2019</xref>; Stehlik, 2000; Taggart <italic>et al</italic>., 2012; <xref ref-type="bibr" rid="ref-86-32498">Takebayashi <italic>et al</italic>., 2019</xref>; Trip <italic>et al</italic>., 2019; Wark <italic>et al</italic>., 2023</p></td>
</tr>
<tr>
<td valign="top" align="left"><p>Percepci&#x00F3;n</p>
<p>del envejecimiento</p></td>
<td valign="top" align="left"><p>Anderson-Kittow <italic>et al</italic>., 2024; <xref ref-type="bibr" rid="ref-13-32498">Brown <italic>et al</italic>., 2009</xref>; <xref ref-type="bibr" rid="ref-15-32498">Buys <italic>et al</italic>., 2008</xref>; <xref ref-type="bibr" rid="ref-20-32498">Dew <italic>et al</italic>., 2006</xref>; <xref ref-type="bibr" rid="ref-23-32498">Dusart, 2011</xref>; <xref ref-type="bibr" rid="ref-26-32498">Ellison <italic>et al</italic>., 2011</xref>; <xref ref-type="bibr" rid="ref-42-32498">Hutchings <italic>et al</italic>., 2017</xref>; Mill&#x00E1;n-Calenti <italic>et al</italic>., 2003; Wark <italic>et al</italic>., 2015a</p></td>
</tr>
</tbody>
</table>
<table-wrap-foot>
<attrib>Fuente: Elaboraci&#x00F3;n propia.</attrib>
</table-wrap-foot>
</table-wrap>
<sec id="sec-4-32498">
<label>3.1.</label>
<title>Programas y servicios de apoyo al cuidado</title>
<p>Este apartado explora los desaf&#x00ED;os y las estrategias en la prestaci&#x00F3;n de servicios de apoyo para el cuidado de personas con discapacidad intelectual que envejecen, abarcando desde la adecuaci&#x00F3;n de los servicios y la formaci&#x00F3;n profesional hasta la atenci&#x00F3;n en residencial paliativa.</p>
<p>Las investigaciones coinciden en que los servicios sociales y de salud deben adecuarse a las necesidades espec&#x00ED;ficas de esta poblaci&#x00F3;n, garantizando no solo el lugar donde se envejece, sino tambi&#x00E9;n la importancia de mantener su calidad de vida, identidad y derechos (<xref ref-type="bibr" rid="ref-80-32498">Schiettecat <italic>et al</italic>., 2023</xref>). Un aspecto transversal en la literatura es la necesidad de mejorar la formaci&#x00F3;n de los profesionales, particularmente en el reconocimiento de los signos del envejecimiento y el abordaje de problem&#x00E1;ticas m&#x00E9;dicas y de salud mental (<xref ref-type="bibr" rid="ref-3-32498">Alftberg <italic>et al</italic>., 2021</xref>; <xref ref-type="bibr" rid="ref-40-32498">Hussain <italic>et al</italic>., 2019</xref>; <xref ref-type="bibr" rid="ref-101-32498">Wark <italic>et al.</italic>, 2014b</xref>).</p>
<p>En el plano organizativo-comunitario, diversos estudios destacan limitaciones estructurales y operativas que afectan la prestaci&#x00F3;n de apoyos, como la falta de financiamiento, la sobrecarga laboral, las dificultades de acceso en contextos rurales (<xref ref-type="bibr" rid="ref-99-32498">Wark <italic>et al</italic>., 2013</xref>, <xref ref-type="bibr" rid="ref-100-32498">2014a</xref>), as&#x00ED; como la sobrecarga laboral y una burocracia excesiva que obstaculiza la coordinaci&#x00F3;n adecuada de cuidados (<xref ref-type="bibr" rid="ref-101-32498">Wark <italic>et al</italic>., 2014b</xref>, <xref ref-type="bibr" rid="ref-98-32498">2015</xref>). Estas barreras impactan tanto en la calidad de la atenci&#x00F3;n como en el bienestar del personal y de los cuidadores.</p>
<p>En el &#x00E1;mbito residencial, la comprensi&#x00F3;n del proceso de envejecimiento suele ser limitada y enfocarse en la medicalizaci&#x00F3;n, dejando en evidencia la necesidad de una mayor preparaci&#x00F3;n institucional para apoyar procesos de envejecimiento activos y centrados en la persona (<xref ref-type="bibr" rid="ref-5-32498">Araten-Bergman y Bigby, 2024</xref>; <xref ref-type="bibr" rid="ref-58-32498">McCausland <italic>et al</italic>., 2021</xref>; <xref ref-type="bibr" rid="ref-63-32498">Northway <italic>et al</italic>., 2017</xref>). A esto se suma la complejidad de los cuidados paliativos, donde se enfatiza la necesidad de preparar y acompa&#x00F1;ar a las personas y sus cuidadores para enfrentar el proceso de morir, garantizando la autonom&#x00ED;a y el respeto de los derechos hasta el final de la vida (<xref ref-type="bibr" rid="ref-70-32498">Read y Cartlidge, 2012</xref>; <xref ref-type="bibr" rid="ref-103-32498">Wiese <italic>et al</italic>., 2012</xref>).</p>
<p>En conjunto, estos estudios resaltan la urgencia de implementar estrategias organizativas y herramientas formativas para promover un modelo de envejecimiento activo que respalde la autodeterminaci&#x00F3;n y la toma de decisiones aut&#x00F3;nomas (<xref ref-type="bibr" rid="ref-44-32498">Johansson <italic>et al</italic>., 2017</xref>).</p>
</sec>
<sec id="sec-5-32498">
<label>3.2.</label>
<title>Salud y morbilidad</title>
<p>Este apartado se centra en los desaf&#x00ED;os de salud y morbilidad que enfrentan las personas con discapacidad intelectual al envejecer, haciendo hincapi&#x00E9; en los trastornos, la medicaci&#x00F3;n y la evaluaci&#x00F3;n del deterioro cognitivo. Las investigaciones indican que, aunque el proceso de envejecimiento en esta poblaci&#x00F3;n presenta similitudes con el de la poblaci&#x00F3;n general, existen particularidades como una mayor incidencia de trastornos psiqui&#x00E1;tricos avanzados y una fuerte asociaci&#x00F3;n entre eventos adversos, problemas de salud mental y comorbilidades f&#x00ED;sicas, lo que resalta la necesidad de un apoyo profesional para mitigar estos riesgos (<xref ref-type="bibr" rid="ref-41-32498">Hussain <italic>et al</italic>., 2021</xref>). Con relaci&#x00F3;n al uso de medicamentos, estudios muestran que el grado de discapacidad, los problemas de conducta y la residencia institucional se asocian a la prescripci&#x00F3;n de antipsic&#x00F3;ticos sedantes sin diagn&#x00F3;sticos psiqui&#x00E1;tricos exhaustivos (<xref ref-type="bibr" rid="ref-7-32498">Axmon <italic>et al</italic>., 2019</xref>). Adem&#x00E1;s, se ha vinculado el riesgo de demencia a pr&#x00E1;cticas de sobremedicaci&#x00F3;n, lo que demanda pautas claras y mejores estrategias en el tratamiento (<xref ref-type="bibr" rid="ref-102-32498">Wicki y Riese, 2016</xref>).</p>
<p>En este sentido, la detecci&#x00F3;n y el seguimiento del deterioro cognitivo constituyen un aspecto clave, ya que la demencia en personas con discapacidad intelectual triplica la prevalencia de la poblaci&#x00F3;n general, y m&#x00E1;s de un tercio vive en residencias de largo plazo, planteando desaf&#x00ED;os de atenci&#x00F3;n, dado que muchos servicios siguen orientados a personas mayores de 65 a&#x00F1;os, sin contemplar la especificidad de este grupo (<xref ref-type="bibr" rid="ref-83-32498">Shooshtari <italic>et al</italic>., 2017</xref>). Para abordar este desaf&#x00ED;o, se ha propuesto el uso de la escala DLD (Dementia Questionnaire for People with Learning Disabilities), un instrumento que posibilita una evaluaci&#x00F3;n adaptada a las caracter&#x00ED;sticas de la poblaci&#x00F3;n, constituy&#x00E9;ndose en una opci&#x00F3;n relevante para discriminar la demencia en este grupo (<xref ref-type="bibr" rid="ref-96-32498">Wallace <italic>et al</italic>., 2021</xref>).</p>
</sec>
<sec id="sec-6-32498">
<label>3.3.</label>
<title>Familia y hogares</title>
<p>Esta categor&#x00ED;a aborda el papel fundamental del entorno familiar y los hogares en el cuidado de personas con discapacidad intelectual que envejecen, destacando tanto desaf&#x00ED;os como oportunidades para asegurar un envejecimiento digno. El cuidado familiar sigue siendo esencial, pero las investigaciones muestran un deterioro progresivo en la capacidad de los familiares, especialmente los padres o los familiares que cumplen dicho rol, para brindar apoyo a medida que envejecen. Esta situaci&#x00F3;n revela la necesidad de sistemas complementarios, como servicios domiciliarios o viviendas adaptadas, que permitan a las personas permanecer en su hogar con los apoyos necesarios en caso de fallecimiento de sus cuidadores principales (<xref ref-type="bibr" rid="ref-62-32498">Niedbalski, 2023</xref>; <xref ref-type="bibr" rid="ref-82-32498">Shaw <italic>et al</italic>., 2011</xref>).</p>
<p>Uno de los temas recurrentes en la literatura es la incertidumbre respecto al cuidado postparental. La escasez de servicios formales adecuados obliga, con frecuencia, a recurrir a redes de apoyo informales (<xref ref-type="bibr" rid="ref-14-32498">Bryant y Garnham, 2017</xref>; <xref ref-type="bibr" rid="ref-16-32498">Byram, 2018</xref>; <xref ref-type="bibr" rid="ref-54-32498">Low <italic>et al</italic>., 2017</xref>), problem&#x00E1;tica que se intensifica en contextos culturales vulnerables, donde la escasez de apoyos institucionales obliga a las familias a asumir un rol central (<xref ref-type="bibr" rid="ref-12-32498">Brennan <italic>et al</italic>., 2018</xref>; <xref ref-type="bibr" rid="ref-84-32498">Shrestha y Weber, 2002</xref>). Esta situaci&#x00F3;n evidencia la necesidad urgente de una planificaci&#x00F3;n adecuada y sostenida en el tiempo para responder a las demandas de esta poblaci&#x00F3;n.</p>
<p>Cuando los padres envejecen, a menudo los hermanos deben asumir el rol de cuidadores, un proceso que requiere un acompa&#x00F1;amiento adecuado (<xref ref-type="bibr" rid="ref-19-32498">Coyle <italic>et al</italic>., 2014</xref>). Si bien la transici&#x00F3;n puede ser abrupta, el cuidado familiar secundario puede generar bienestar cuando se da en un entorno conocido y afectivo (<xref ref-type="bibr" rid="ref-9-32498">Bigby <italic>et al</italic>., 2011</xref>). Sin embargo, la planificaci&#x00F3;n suele centrarse en el lugar de residencia, dejando de lado otros aspectos esenciales para la calidad de vida, lo que subraya la necesidad de apoyos formales (<xref ref-type="bibr" rid="ref-71-32498">Reilly y Conliffe, 2002</xref>). Aspectos como la vulnerabilidad familiar, influenciada incluso por factores espirituales, puede afectar la responsabilidad en la planificaci&#x00F3;n del cuidado (<xref ref-type="bibr" rid="ref-86-32498">Takebayashi <italic>et al</italic>., 2019</xref>) y, en algunos casos, estructuras familiares dominantes perpet&#x00FA;an roles asim&#x00E9;tricos que impiden el reconocimiento pleno de la vida adulta y la vejez de personas con discapacidad intelectual (<xref ref-type="bibr" rid="ref-27-32498">Engwall, 2017</xref>).</p>
</sec>
<sec id="sec-7-32498">
<label>3.4.</label>
<title>Percepci&#x00F3;n del envejecimiento</title>
<p>Esta categor&#x00ED;a examina la percepci&#x00F3;n del envejecimiento en personas con discapacidad intelectual, identificando tanto barreras como facilitadores y destacando la importancia de la informaci&#x00F3;n y el apoyo en la comprensi&#x00F3;n de esta etapa vital.</p>
<p>La percepci&#x00F3;n del envejecimiento en esta poblaci&#x00F3;n ha recibido escasa atenci&#x00F3;n. En contextos rurales, se han identificado barreras significativas como la falta de profesionales especializados, que obliga a recorrer largas distancias, y cambios de residencia no planificados, que subrayan la necesidad de estrategias adaptadas a sus necesidades (<xref ref-type="bibr" rid="ref-98-32498">Wark <italic>et al</italic>., 2015</xref>). La incertidumbre en el acceso a servicios comunitarios genera preocupaciones sobre la posibilidad de permanecer en el hogar y los temores ante reubicaciones tempranas pueden impactar negativamente en el bienestar (<xref ref-type="bibr" rid="ref-26-32498">Ellison <italic>et al</italic>., 2011</xref>).</p>
<p>En una visi&#x00F3;n positiva, se resalta que una buena salud y redes de apoyo s&#x00F3;lidas promueven un envejecimiento activo, fomentando la participaci&#x00F3;n, la autoconfianza y el fortalecimiento de habilidades para la vida diaria (<xref ref-type="bibr" rid="ref-15-32498">Buys <italic>et al</italic>., 2008</xref>). Sin embargo, la persistencia de estigmas, la desinformaci&#x00F3;n y la falta de educaci&#x00F3;n accesible sobre temas de salud &#x2012;como ocurre con las mujeres que reciben informaci&#x00F3;n incompleta sobre los cambios corporales o los riesgos asociados al envejecimiento&#x2012; afectan el bienestar y limitan el acceso a la atenci&#x00F3;n m&#x00E9;dica, especialmente en el &#x00E1;mbito de la salud mental (<xref ref-type="bibr" rid="ref-13-32498">Brown y Gill, 2009</xref>). Otro aspecto crucial es la relaci&#x00F3;n con la muerte. La mayor longevidad de estas personas posibilita una relaci&#x00F3;n m&#x00E1;s cercana con su finitud. Sin embargo, persisten concepciones fragmentadas o incompletas, lo que evidencia la necesidad de herramientas para apoyar a profesionales y familiares en procesos de duelo o acompa&#x00F1;amiento al final de vida (<xref ref-type="bibr" rid="ref-23-32498">Dusart, 2011</xref>).</p>
<p>Finalmente, se identifican brechas en la autopercepci&#x00F3;n de autonom&#x00ED;a. Fomentar la participaci&#x00F3;n en actividades significativas, establecer relaciones de confianza con el personal de apoyo y promover metas personales son elementos clave que refuerzan la autodeterminaci&#x00F3;n, fomentan la independencia y mejoran la calidad de vida (<xref ref-type="bibr" rid="ref-20-32498">Dew <italic>et al</italic>., 2006</xref>; <xref ref-type="bibr" rid="ref-42-32498">Hutchings y Chaplin, 2017</xref>).</p>
</sec>
</sec>
<sec id="sec-8-32498">
<label>4.</label>
<title>Conclusiones</title>
<p>Este art&#x00ED;culo present&#x00F3; una revisi&#x00F3;n sistem&#x00E1;tica de alcance sobre el cuidado en personas con discapacidad intelectual que envejecen, analizada desde cuatro perspectivas: programas y servicios de apoyo, salud y morbilidad, familia y hogares y percepci&#x00F3;n del envejecimiento. La literatura indica que los servicios existentes, orientados a la poblaci&#x00F3;n general, no se adaptan a las necesidades espec&#x00ED;ficas de este colectivo, lo que se traduce en pr&#x00E1;cticas de cuidado inadecuadas y en una insuficiente formaci&#x00F3;n de los profesionales (<xref ref-type="bibr" rid="ref-7-32498">Axmon <italic>et al</italic>., 2019</xref>; <xref ref-type="bibr" rid="ref-29-32498">Forrester-Jones <italic>et al</italic>., 2017</xref>; <xref ref-type="bibr" rid="ref-35-32498">Hahn, 2012</xref>; <xref ref-type="bibr" rid="ref-46-32498">Kim <italic>et al</italic>., 2011</xref>; <xref ref-type="bibr" rid="ref-51-32498">Lin <italic>et al</italic>., 2011</xref>; <xref ref-type="bibr" rid="ref-58-32498">McCausland <italic>et al</italic>., 2021</xref>). Se subraya adem&#x00E1;s la necesidad de fortalecer la capacitaci&#x00F3;n de cuidadores y garantizar un financiamiento adecuado para implementar modelos de cuidado especializados (<xref ref-type="bibr" rid="ref-3-32498">Alftberg <italic>et al</italic>., 2021</xref>; <xref ref-type="bibr" rid="ref-8-32498">Bigby, 2008</xref>; <xref ref-type="bibr" rid="ref-59-32498">McGinley y Knoke, 2018</xref>; <xref ref-type="bibr" rid="ref-62-32498">Niedbalski, 2023</xref>; <xref ref-type="bibr" rid="ref-85-32498">Spassiani <italic>et al</italic>., 2019</xref>).</p>
<p>En el &#x00E1;mbito familiar, el envejecimiento de las personas con discapacidad intelectual est&#x00E1; estrechamente vinculado al deterioro de la capacidad de cuidado de los familiares, ya que el propio envejecimiento de los cuidadores puede derivar en reacomodaciones no planificadas y afectar la autonom&#x00ED;a y los derechos de la persona atendida (<xref ref-type="bibr" rid="ref-12-32498">Brennan <italic>et al</italic>., 2018</xref>; <xref ref-type="bibr" rid="ref-27-32498">Engwall, 2017</xref>). En este sentido una adecuada planificaci&#x00F3;n por parte de la familia o la red de apoyo resulta fundamental para garantizar cuidados continuos, apoyando a familiares cercanos y asegurando el derecho a un hogar adecuado para sostener el cuidado a largo plazo (<xref ref-type="bibr" rid="ref-18-32498">Chou y Kr&#x00F6;ger, 2022</xref>; <xref ref-type="bibr" rid="ref-77-32498">Saxena, 2015</xref>; <xref ref-type="bibr" rid="ref-95-32498">Walker, 2015</xref>).</p>
<p>Desde la perspectiva de la salud, es esencial comprender las consecuencias del envejecimiento y promover un envejecimiento saludable. Se destaca la pr&#x00E1;ctica habitual de la polifarmacia y la frecuente prescripci&#x00F3;n de antipsic&#x00F3;ticos sin diagn&#x00F3;sticos psiqui&#x00E1;tricos exhaustivos, especialmente en personas con discapacidad intelectual grave, lo que evidencia la necesidad de mejorar la formaci&#x00F3;n de los profesionales de la salud (<xref ref-type="bibr" rid="ref-2-32498">Ahlstr&#x00F6;m <italic>et al</italic>., 2022</xref>; <xref ref-type="bibr" rid="ref-7-32498">Axmon <italic>et al</italic>., 2019</xref>; <xref ref-type="bibr" rid="ref-49-32498">Lin y Lin, 2021</xref>; <xref ref-type="bibr" rid="ref-60-32498">Mill&#x00E1;n-Calenti <italic>et al</italic>., 2006</xref>).</p>
<p>En cuanto a las percepciones del envejecimiento, se observan nociones incompletas sobre la muerte y el duelo, aspectos que inciden en la calidad de vida y en la salud mental de la poblaci&#x00F3;n, al mismo tiempo que generan cambios en la red de apoyo (<xref ref-type="bibr" rid="ref-22-32498">Dusart, 2008</xref>, <xref ref-type="bibr" rid="ref-23-32498">2011</xref>, <xref ref-type="bibr" rid="ref-24-32498">2018</xref>; <xref ref-type="bibr" rid="ref-25-32498">Egan <italic>et al</italic>., 2022</xref>; <xref ref-type="bibr" rid="ref-45-32498">Kessel y Merrick, 2001</xref>; <xref ref-type="bibr" rid="ref-67-32498">Patti <italic>et al.</italic>, 2010</xref>). Relevar las percepciones sobre el envejecimiento a partir de la voz de las personas con discapacidad intelectual es una v&#x00ED;a que favorece la transformaci&#x00F3;n de sus condiciones de vida, generando avances desde la justicia social y con esto favorecer la generaci&#x00F3;n de conocimiento sobre temas significativos para sus vidas (<xref ref-type="bibr" rid="ref-33-32498">Goodley, 2023</xref>; <xref ref-type="bibr" rid="ref-88-32498">Taylor, 2013</xref>).</p>
<p>El an&#x00E1;lisis presentado permite comprender el cuidado desde una perspectiva multidimensional, aunque hist&#x00F3;ricamente condicionada desde el enfoque m&#x00E9;dico y la necesidad (<xref ref-type="bibr" rid="ref-17-32498">Cancio-Bello <italic>et al</italic>., 2020</xref>; <xref ref-type="bibr" rid="ref-65-32498">Orem, 1983</xref>). La falta de formaci&#x00F3;n especializada y de protocolos adecuados puede dificultar la detecci&#x00F3;n temprana de deterioros cognitivos, aumentando el riesgo de sobremedicaci&#x00F3;n. Para enfrentar estas brechas, se han desarrollado intervenciones integradoras y centradas en la persona, demostrando ser estrategias efectivas para mejorar la calidad de atenci&#x00F3;n (<xref ref-type="bibr" rid="ref-28-32498">Esteba-Castillo <italic>et al</italic>., 2006</xref>; <xref ref-type="bibr" rid="ref-50-32498">Lin <italic>et al</italic>., 2016</xref>). Adem&#x00E1;s, se evidencia que la limitada oferta de servicios formales genera una sobrecarga en las familias cuidadoras, afectando negativamente su bienestar y poniendo en riesgo la continuidad de los cuidados. En este contexto, las intervenciones intergeneracionales han emergido como estrategias eficaces para planificar y sostener los cuidados a largo plazo (<xref ref-type="bibr" rid="ref-55-32498">Mahon <italic>et al</italic>., 2019</xref>; <xref ref-type="bibr" rid="ref-57-32498">Matos <italic>et al</italic>., 2015</xref>). Asimismo, la calidad de los apoyos influye directamente en c&#x00F3;mo se percibe el envejecimiento, siendo esencial una atenci&#x00F3;n centrada en la persona que promueva la autodeterminaci&#x00F3;n. Los programas integrales que responden a necesidades espec&#x00ED;ficas fortalecen la autonom&#x00ED;a personal y son fundamentales para un envejecimiento saludable (<xref ref-type="bibr" rid="ref-44-32498">Johansson <italic>et al</italic>., 2017</xref>; <xref ref-type="bibr" rid="ref-89-32498">Thalen <italic>et al</italic>., 2023</xref>). Estas interconexiones subrayan la necesidad de implementar modelos integrados de cuidado que articulen salud, servicios sociales, apoyo familiar y los propios deseos y expectativas de las personas con discapacidad intelectual.</p>
<p>Una de las limitaciones del estudio radica en la focalizaci&#x00F3;n en fuentes provenientes de revistas con alto grado de indexaci&#x00F3;n, lo cual pudo generar exclusiones de investigaciones emergentes publicadas en otras revistas afines a la tem&#x00E1;tica. Esta situaci&#x00F3;n podr&#x00ED;a explicar la escasa presencia de estudios que aborden el cuidado desde la perspectiva de las propias personas con discapacidad intelectual, un campo que ha comenzado a desarrollarse con mayor fuerza recientemente, especialmente desde enfoques cualitativos que priorizan la experiencia y las subjetividades (<xref ref-type="bibr" rid="ref-32-32498">Gonz&#x00E1;lez-Carrasco <italic>et al</italic>., 2025</xref>; <xref ref-type="bibr" rid="ref-33-32498">Goodley, 2023</xref>). En este sentido, es fundamental orientar los esfuerzos hacia un modelo de investigaci&#x00F3;n inclusiva que aborde la complejidad del envejecimiento y el cuidado, promoviendo la participaci&#x00F3;n activa de las personas con discapacidad intelectual en la generaci&#x00F3;n de conocimiento y en la formulaci&#x00F3;n de agendas que reflejen sus intereses y necesidades leg&#x00ED;timas (<xref ref-type="bibr" rid="ref-94-32498">Vega-C&#x00F3;rdova <italic>et al</italic>., 2021</xref>; <xref ref-type="bibr" rid="ref-97-32498">Walmsley <italic>et al</italic>., 2018</xref>). En conclusi&#x00F3;n, el cuidado de las personas con discapacidad intelectual que envejecen presenta brechas significativas en m&#x00FA;ltiples &#x00E1;mbitos. Es imperativo avanzar hacia un modelo integral de cuidados que atienda de manera efectiva sus necesidades y derechos, promoviendo la equidad y la participaci&#x00F3;n activa en la transformaci&#x00F3;n de las pol&#x00ED;ticas de sus cuidados al envejecer.</p>
</sec>
</body>
<back>
<fn-group>
<fn fn-type="financial-disclosure"><p><bold>5. Financiaci&#x00F3;n</bold></p>
<p>Este trabajo fue apoyado por la Agencia Nacional de Investigaci&#x00F3;n y Desarrollo (ANID), Chile, Doctorado Nacional n.&#x00B0; 21221540, MILENIO ICS2019_024 y ANID-FONDECYT n.&#x00BA; 11230525.</p></fn>
</fn-group>
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