Short films about ageing with an intellectual disability bring research to life

Posted on: 06 December 2016

How do you communicate important research findings on issues facing people with intellectual disability (ID) when that same research shows that people with an Intellectual disability have serious literacy barriers and are, for the most part, unable to access the internet?

The research team from the intellectual disability supplement to the Irish Longitudinal study on Ageing (IDS-TILDA) has solved just that with the production of a series of short films featuring people with an intellectual disability, specifically designed for people with ID. The films depict research findings on the complex and unique health and social challenges facing Ireland’s population who are ageing with an intellectual disability through the lens of those who directly experience them.

People with intellectual disability role played key findings from the IDS TILDA study for a series of short films which look at both the main facts of the findings and also at how those findings relate to people with ID, as seen and understood through their eyes and voices. For example, the IDS TILDA study found an almost doubling of dementia rates amongst this population over a three year period and earlier onset than is found in the general population. The first video in the series captures through the actors’ conversations, the specific worries, confusions and concerns about dementia among people with ID.

Speaking about the importance of this work, Professor Mary McCarron, principal investigator of IDS TILDA and Dean of the Faculty of Health Science at Trinity said: “Conveying very important research findings to those who really need to hear about them was just not possible using traditional communication channels. People with intellectual disability are ageing at a particular historic point in time, and their ageing is influenced by the history of our past, a past where this population had no right to education and most therefore are unable to read and write. This is often overlooked in academic research and challenges researchers to find other ways to convey findings and get key messages across. The films powerfully and uniquely demonstrate the real value of inclusive and participative approaches to research and dissemination.”

Professor McCarron continued: “For people with ID, we hope these films will help them understand the findings and how they relate to their own lives and the lives of their friends. For their families, carers and healthcare professionals, we hope that these films will add to their understanding of these complex issues as seen through the eyes of the people they affect.”

Some of the actors in the films spoke of their experience of being involved in the production of these films:  “I really enjoyed it; I enjoyed every bit of it, learning the words and speaking them,” said one participant while another said: “When people see the film they will learn, they’ll learn about dementia… and about things that help your memory.

Dr Graham Love, Chief Executive at the Health Research Board, who funded the award to make the videos said: “The HRB is driving the development of Public and Patient Involvement, or PPI, in research in Ireland. Involving the public and patients in research makes it more relevant to the people it is going to benefit and makes it more likely it will get into policy and practice. IDS-TILDA is not only a shining example of PPI in research, but to my knowledge, is a world first in terms of engaging  people with intellectual disability in research rather than doing research about them.”

This project was funded under the Health Research Board’s Knowledge Exchange and Dissemination Scheme.

The videos are available here: https://www.youtube.com/playlist?list=PL55XqDjybyL9K0Wo9tvRzcZbfv1Fd8Hx9

The videos are also available as DVDs – please contact: dmccaus@tcd.ie