Developing effective partnerships with people with dementia in dementia education

David Reid, University Teacher in the School of Nursing and Midwifery, tells us about his project which has received support from the Engaged Curriculum Funding Stream.

The source of dementia expertise has changed. Since the late 1980s, when people with forms of dementia were often viewed as experiencing nothing more than a “living death”, opinion has shifted radically so that now a ‘living well with dementia’ agenda routinely underpins much academic health and social care, practice and public discourse. The voices of people living with dementia are commonly sought in empirical research studies – heard within the membership of some research teams, informed the first National Dementia Strategy for England and persuade us to think again about our knowledge of dementia through periodic national dementia awareness campaigns across a range of media.

In the School of Nursing Midwifery we have found ways to involve local people diagnosed with dementia directly in our dementia education since 2009. Thanks to our excellent partnerships with local voluntary sector organisations it is possible to bring our students and people with dementia together in dialogue. The results of this engagement are usually extremely positive, with both students and members of the public evaluating these sessions as invaluable. For example, reflecting upon his teaching role last month on our MA Dementia Studies ‘Theorising Dementia in the UK Policy Context’ module, Mr Colin Ward described the experience as “a real breath of fresh air”.

Mr Colin Ward with MA Dementia Studies’ students, October 2014

Mr Colin Ward with MA Dementia Studies’ students, October 2014

 This project seeks to consolidate, review and share the learning that has come from the involvement of people with dementia in our education provision. Firstly, I plan to work with previous and current contributors to develop a best practice model for this kind of involvement. This will be achieved by inviting these contributors to meet and discuss a ‘flowchart for involvement’ which I currently use, albeit informally, to guide this process. Once contributors have been identified, the flowchart will be circulated with a request for comments on this staged process. Contributors will have a range of options for sharing their views, including consultation meetings to be held in the early months of 2015. A draft model of best practice will develop from this consultation and recirculated for additional comments. Colleagues in dementia education provision will also be asked for their views on the model that is formulated. The aim is to utilise the model of best practice in the involvement of people with dementia in the MA Dementia Studies from 2015-16, a programme which is delivered cross-faculty, and includes colleagues and departments with no or less experience of seeking to include people with dementia in direct teaching roles.

The second main aim of the project is to consult with previous and current contributors – and the voluntary organisations with who we have partnerships – to explore a plan to extend our commitment to involve people with dementia in education: offering people with dementia opportunities to become members of the MA Dementia Studies governance team.

We know, from recent articulations of ‘co-production’ in health and social care policy, that user-involvement can be more or less meaningful, in terms of the influence such partnership might exert over what is being produced. The MA Dementia Studies is characterised by a commitment to provide opportunities to draw upon the expertise of people with dementia. To be ‘transformative’, a logical extension of this commitment is to locate people’s expertise at the heart of this programme. However, is this desirable or practicable?

A first step will be to simplify the standard governance procedures so that the roles of potential members of the governance team are identifiable and comprehensible, and that ‘typical’ duration of involvement is clarified. This will be circulated to associates of the Dementia South Yorkshire network and to previous and current contributors for comments regarding desirability and practicability. Next, consultation meetings will be arranged in 2015 with these stakeholders to consider, specifically, a range of issues including any additional support needs, costs and appropriateness of current governance role descriptors. For example, a question is likely to arise about the nature of any ‘reasonable adjustment’ that might be required for this plan to come to fruition.

A report will be written, including a ‘plain English’ summary, reporting on the consultation findings and recommendations. A revised report will then be shared with the above plus colleagues in TUoS with Learning and Teaching expertise for their comments. Clearly, a key dimension of this project is to establish whether there are any sources of resistance within the organisation to the proposed initiative.

If satisfactory to all key stakeholders, the intention is to use the intelligence gained to recruit at least one person with dementia to join the governance team for the MA Dementia Studies from 2015 onwards.

Both parts of this project are ambitious, and summarising them here reinforces this realisation. Yet, there is the potential here to deliver insights about the involvement of people with dementia in our education which have resonance with colleagues across and beyond the University of Sheffield. A public lecture and two journal article submissions are planned for 2015 to maximise this opportunity – and I welcome further suggestions for sharing the lessons of this project.


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