New Programme – Shifting Paradigms for Dementia: Involving People Living with Dementia across Research, Policy and Practice

In the third of our introductions to the new programmes, Dr Grant Gibson provides a bit more detail on the programme he’s leading with Dr Diane Pennington – ‘Shifting Paradigms for Dementia’.

Dr Grant Gibson is a Lecturer in Dementia Studies at the University of Stirling.  He has worked on projects evaluating satisfaction with memory services among people with dementia and their carers, the design and implementation of assistive technology for people with dementia, and provision of health and social care services for people with dementia and their carers in primary care.

Dr Diane Pennington is a Lecturer in Information Science and Course Director for the MSc/PGDip in Information and Library Studies at the University of Strathclyde.  Her research areas include non-text information indexing and retrieval, qualitative methods for visual information, Emotional Information Retrieval (EmIR), information organisation, user behaviours on social media, and online health information preferences.


Why do you think this is an important issue to consider/interrogate/explore?

We are currently seeing two movements growing within dementia care research, policy and practice.  First we are seeing a dramatic growth in public and political interest in dementia, based on a largely negative understanding of dementia as a tragic illness and a sign of ‘apocalyptic demography’ which will bankrupt health and social care systems.  Yet a second, smaller movement is being driven by people living with dementia who are increasingly demanding that people with dementia should be much more involved in society at large, including dementia research and policy. Indeed this involvement has led in Scotland and beyond to what has been called ‘rights based’ approaches to dementia, which accord people living with dementia with a number of rights and responsibilities., and demands for these rights to be respected.

In this series, we hope to explore, with people living with dementia, how rights based approaches to dementia can be translated into practice. Driven by groups of people with dementia based here in Scotland, we will explore some of the areas where the exchange of information and knowledge between people with dementia and research and policy is taking place, and how it is benefitting both researchers, policy makers and services, and more importantly, how it is reshaping the lives of people with dementia


Who else is working with you on this, and how did the programme team come together?

Our team is led by a combination of multi-disciplinary researchers, alongside groups representing people living with dementia.  From the academic side our team includes academics from disciplines including dementia studies, social work and information science.  Outside academia, our team involves Dementia Friendly East Lothian CIC, (DFEL) and the Dementia Engagement and Empowerment Project (DEEP).  The programme has also been informed by organisations such as the Life Changes Trust and its funding of dementia friendly communities across Scotland, and the Alzheimer’s Society.


How have you structured the programme?

Our programme is structured around four workshops, each of which will involve innovative approaches to dementia and the rights of people living with dementia, and which will put forward novel approaches for knowledge exchange.  In our first seminar we set the scene for the wider programme by discussing how people with dementia are affected by social policies, in particular around austerity, before identifying gaps between policy rhetoric around ‘dementia friendliness’ and how this is experienced on the ground.

In our later workshops, we will explore how research and policy can benefit from engaging with people with dementia around three areas which are receiving attention in relation to social policy and dementia.  These areas are around the use of technology by people with dementia, the growth of dementia friendly communities, and dementia and the arts.  Each of these workshops will use novel approaches.  In our technology workshop, we will combine speakers with a visit to the University of Strathclyde’s ‘fab lab’, in which we will give attendees the opportunity to ‘hack’ their own devices.  In our third workshop we will visit Dementia Friendly East Lothian CIC to see how a dementia friendly neighbourhood works in practice.  Finally, the concluding workshop will look at how the arts can be used as a communicative tool in dementia, with the assistance of the MacRobert Arts Centre in Stirling.


What kind of participants are you hoping to involve?

This programme hopes to involve a range of people involved in dementia research and policy.  We would encourage anyone with an interest in involving people with dementia in research or policy to attend.  We will expect this to include academics, policymakers or practitioners, and particularly those who are hoping to engage people with dementia within their research, or within the development of services or policy.  Importantly, DEEP will also assist people living with dementia and their supporters to attend our workshops.

You can find out more about the programme on the SUII website here.  Registration for the second workshop in the series, to be held on 17 November, is now open and available here.

Author: scotinsight

The Scottish Universities Insight Institute supports programmes of knowledge exchange which address and provide insight on substantial issues that face Scotland and the wider world. Our programmes break down disciplinary and organisational barriers in bringing together academics from different backgrounds, policymakers and practitioners to mobilise existing knowledge in fresh ways through sustained and collaborative focus on a shared issue. Our member universities are: Aberdeen, Dundee, Heriot Watt, St Andrews, Strathclyde, and Glasgow School of Art.

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