Perceived Quality of Life in Adults with Mild to Moderate Intellectual Disability and Early-Stage Dementia in Chile
Abstract
--- - Increased life expectancy among people with intellectual disability has led to a growing prevalence of dementia, highlighting the need to understand how quality of life is experienced during its early stages. This qualitative study explored perceived quality of life among adults with mild to moderate intellectual disability and mild dementia residing in long-term care facilities in Chile. Semi-structured interviews were conducted with 86 individuals, using accessible communication strategies and visual supports. Data were analyzed using reflexive thematic analysis, informed by Schalock and Verdugo's quality of life framework. Five interrelated themes described how quality of life was experienced through the organization of activities and environments, emotional and physical experiences, relationships and participation, involvement in decision-making and support, and perceived changes over time. Quality of life in early-stage dementia was articulated through concrete experiences of participation, relationships, and support, underscoring the importance of everyday contexts as key sites where well-being is experienced and sustained. - La haussede l'esp & eacute;rance de vie chez les personnes pr & eacute;sentant une d & eacute;ficienceintellectuelle a entra & icirc;n & eacute; une augmentation de la pr & eacute;valence de la d & eacute;mence,soulignant la n & eacute;cessit & eacute; de comprendre comment la qualit & eacute; de vie est per & ccedil;ue auxstades pr & eacute;coces de la maladie. Cette & eacute;tude qualitative a explor & eacute; la qualit & eacute; de vie per & ccedil;ue chez des adultespr & eacute;sentant une d & eacute;ficience intellectuelle l & eacute;g & egrave;re & agrave; mod & eacute;r & eacute;e et une d & eacute;mence l & eacute;g & egrave;rer & eacute;sidant dans des & eacute;tablissements de soins de longue dur & eacute;e au Chili. Desentretiens semi-structur & eacute;s ont & eacute;t & eacute; men & eacute;s aupr & egrave;s de 86 personnes, & agrave; l'aide destrat & eacute;gies de communication accessibles et de supports visuels. Les donn & eacute;es ont & eacute;t & eacute; analys & eacute;es & agrave; l'aide d'une analyze th & eacute;matique r & eacute;flexive, s'appuyant sur lecadre de r & eacute;f & eacute;rence de Schalock et Verdugo en mati & egrave;re de qualit & eacute; de vie. Cinqth & egrave;mes interd & eacute;pendants ont d & eacute;crit la mani & egrave;re dont la qualit & eacute; de vie & eacute;tait v & eacute;cuepar le biais de l'organization des activit & eacute;s et des environnements, desexp & eacute;riences & eacute;motionnelles et physiques, des relations et de la participation,de l'implication dans la prise de d & eacute;cision et le soutien, ainsi que deschangements per & ccedil;us au fil du temps. Laqualit & eacute; de vie au stade pr & eacute;coce de la d & eacute;mence s'est exprim & eacute;e & agrave; partird'exp & eacute;riences concr & egrave;tes de participation, de relations et de soutien,soulignant l'importance des contextes quotidiens en tant que lieux cl & eacute;s o & ugrave; lebien-& ecirc;tre est v & eacute;cu et maintenu. - El aumento de laesperanza de vida entre las personas con discapacidad intelectual ha conllevadouna creciente prevalencia de demencia, lo que subraya la necesidad decomprender c & oacute;mo se experimenta la calidad de vida durante sus primeras etapas. Este estudiocualitativo explor & oacute; la calidad de vida percibida entre adultos con discapacidadintelectual leve a moderada y demencia leve que residen en centros de cuidadosa largo plazo en Chile. Se realizaron entrevistas semiestructuradas a 86personas, utilizando estrategias de comunicaci & oacute;n accesibles y apoyos visuales.Los datos se analizaron mediante an & aacute;lisis tem & aacute;tico reflexivo, basado en elmarco de calidad de vida de Schalock y Verdugo. Cinco temasinterrelacionados describieron c & oacute;mo se experimentaba la calidad de vida atrav & eacute;s de la organizaci & oacute;n de actividades y entornos, las experienciasemocionales y f & iacute;sicas, las relaciones y la participaci & oacute;n, la implicaci & oacute;n en latoma de decisiones y el apoyo, y los cambios percibidos a lo largo del tiempo.
Más información
| Título según WOS: | ID WOS:001757628500001 Not found in local WOS DB |
| Título de la Revista: | AJIDD-AMERICAN JOURNAL ON INTELLECTUAL AND DEVELOPMENTAL DISABILITIES |
| Volumen: | 131 |
| Número: | 5 |
| Editorial: | AMER ASSOC INTELLECTUAL and DEVELOPMENTAL DISABILITIES-AAIDD |
| Fecha de publicación: | 2026 |
| Página de inicio: | 322 |
| Página final: | 336 |
| DOI: |
10.1080/19447515.2026.2659595 |
| Notas: | ISI |