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An integrated approach to future planning for adults with intellectual disability and their ageing carers


Aviva Cohen ,

ASSISTID Marie Curie actions Fellowship
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Professor Karola Dillenburger,

Centre for Behaviour Analysis Queen’s University Belfast, GB
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Professor Lizbeth Goodman

SmartLab University College Dublin, IE
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ola Dillenburger2, Professor Lizbeth Goodman3 

1: ASSISTID Marie Curie actions Fellowship;

2: Centre for Behaviour Analysis Queen’s University Belfast, United Kingdom;

3: SmartLab University College Dublin, Ireland


Adults with intellectual disability frequently face the trauma of leaving their family home for the first time after a parent is taken ill. It is often difficult to find appropriate accommodation at short notice. As a consequence many vulnerable adults are placed in general hospitals and other unsuitable situations where staff do not have the necessary time or relevant experience. This can lead to stress and challenging behaviours; this in turn, places additional pressure on new carers and makes it increasingly difficult to find a permanent home.

The focus of this research is on developing tools to promote timely interactions between health care professionals, informal carers and individuals with intellectual disability (ID). The research aims to empower ageing carers to plan for the future in order to promote a smooth transition of care.

To address these issues, we are developing an application (The App) and a multi-dimensional, multi-media training course.

App: The app will enable parents to keep a video and text record of their son/daughter’s everyday activities. New carers can view this easily to understand each person’s needs and preferences; for example, how he or she likes to eat, dress or meet people. Immediate access to these details will help professional carers to minimise the frustration that can lead to challenging behaviours.

Training Course: The multimedia training course educates, informs and supports ageing carers to plan effectively for the future. Topics include: finding accommodation, managing finances and creating legal security. It also addresses complex issues that relate to carers’ frequent reluctance to engage with social services and health care professionals. In addition the course supports parents as they plan their own future as many have not had personal time for decades.

This research was supported by funding from the charity RESPECT and the People Programme (Marie Curie Actions) of the European Union's Seventh Framework Programme (FP7/2007-2013) under REA grant agreement no. PCOFUND-GA-2013-608728’. The project research fellow (Dr Aviva Cohen) is hosted by Professor Lizbeth Goodman at University College Dublin and Professor Karola Dillenburger at Queen’s University Belfast.

How to Cite: Cohen A, Dillenburger PK, Goodman PL. An integrated approach to future planning for adults with intellectual disability and their ageing carers. International Journal of Integrated Care. 2017;17(5):A298. DOI:
Published on 17 Oct 2017.


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