Inclusive research with individuals with Down syndrome at risk for dementia
Authors:
- Luciana Mascarenhas FonsecaLFLuciana Mascarenhas Fonseca
- Ubiratan Tafuri QueirozUQUbiratan Tafuri Queiroz
- Miron Tafuri QueirozMQMiron Tafuri Queiroz
- Orestes Vicente ForlenzaOFOrestes Vicente Forlenza
Open Access
- 1 January 2025
- journal article
- Published by FapUNIFESP (SciELO) in Dementia & Neuropsychologia
- Vol. 19 (suppl 1)
Abstract
Inclusive research is a relatively new concept that has received attention in recent years as a scientific priority to respond to health disparities and maximize the practical implications of research. This approach involves a partnership between academics and the individuals who are experiencing the problem to be investigated. Despite the high incidence of dementia and asymptomatic Alzheimer’s disease in aging individuals with Down syndrome, inclusive research with this population or those with intellectual disability (ID) at risk of dementia is an area that is little approached and not well documented. Here, we describe the evolution of inclusive research on ID and dementia, some of the challenges and benefits of its implementation, and key aspects to consider when planning such studies. There is an urgent need for national and international guidelines to support inclusive research involving this population. Such frameworks should ensure accessibility, ethical rigor, the meaningful participation of co-researchers, ultimately advancing equity and scientific quality in this underrepresented field.Keywords
Funding Information
- National Institute on Aging of the National Institutes of Health (K99AG082864)
- National Institute on Aging of the National Institutes of Health (R03AG081892)
- National Institute on Aging of the National Institutes of Health (25000.002058/2020-71)
- Programa Nacional de Apoio à Atenção da Saúde da Pessoa com Deficiência (K99AG082864)
- Programa Nacional de Apoio à Atenção da Saúde da Pessoa com Deficiência (R03AG081892)
- Programa Nacional de Apoio à Atenção da Saúde da Pessoa com Deficiência (25000.002058/2020-71)
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