A research team, based at the University of Stirling in Scotland, has completed a participatory action study assessing a person‐centred approach to implementation of psychosocial interventions with people who have an intellectual disability and dementia. The study results were published in the Journal of Applied Research in Intellectual Disabilities (JARID), on 18 August 2020. There is a link to an accessible summary included in the published study.
Dementia disproportionality affects people with Down syndrome at an earlier age, on average 55 years, and is associated with mortality in 70% of adults. People with intellectual disabilities other than Down syndrome are also more likely to develop dementia earlier, on average 10 years prior to that experienced by the population without an intellectual disability.
The number of people with an intellectual disability and dementia presents a global health and social challenge with an associated need to reduce stress or agitation and improve quality of life in affected individuals. On this premise, the study aimed to establish the effectiveness of psychosocial interventions in social care settings and to explore the use of photovoice methodology to develop dialogue about dementia. Photovoice is a qualitative method used in community-based participatory research to document and reflect reality.
This mixed-method participatory action study used individualised goal-setting theory with 16 participants with intellectual disability and dementia, and 22 social care staff across 11 sites. Five co-researchers with intellectual disability were part of an inclusive research team collecting data using existing and bespoke tools including photovoice.
Goals typically related to improving mood; a desire to reduce anxiety, confusion and agitation; wanting to feel “more like myself”; engagement in new or previously enjoyed activities; and personal safety. Relevant psychosocial interventions to meet these goals were chosen by participants based on their own needs and preferences.
74% of individual goals met or exceeded expectations with reduction in some “as required” medication. Qualitative findings include themes of enabling care and interventions as tools for practice. Photovoice provided insight into previously unreported fears about dementia.
The study, which was funded by Alzheimer’s Society and is available in open access, concluded that individualised psychosocial interventions have the potential to reduce distress or agitation in people with an intellectual disability and dementia.