The Edinburgh Centre for Research on the Experience of Dementia (ECRED)

We are excited to present to you the third research centre in our blog series: The Edinburgh Centre for Research on the Experience of Dementia (or ECRED)! Would you like to know more about the centre’s journey, initiatives and inspiring work? Read this interview with Prof Heather Wilkinson, the director of ECRED, to learn all about it and how you could get involved.

 

Please describe the journey, mission, and vision of the research centre with which you are affiliated

The Edinburgh Centre for Research on the Experience of Dementia (or ECRED!) was established in October 2015, formalising and providing a base for a strong body of social science focused dementia research within Edinburgh University and drawing on international networks and connections. The emphasis of ECRED was guided by the membership of these networks, particularly those members living with dementia and this has provided the sustained focus on research activity that concerns the experience of living with dementia and involves people who are living with dementia. Our aim for ECRED is to create international social research and impact that prioritises the experience of dementia and strengthens global understanding of living with dementia. We provide a research and learning environment that creates opportunities for the sharing of knowledge and skills focusing on improving the lived experience of dementia – the perspective of the person with dementia is central to this work.

What are the research interests of your research group? 

We have a strong and active commitment to interdisciplinary working and many of our current projects include collaborations with researchers, clinicians and practitioners in a range of practice settings, with voluntary sector organisations and with other academics throughout the UK and internationally as well as across disciplines of social work, counselling, nursing, psychology, philosophy, geography and social policy. Many of our projects have been developed from the concerns and ideas of people living with dementia
Here are a few examples:
1. bold
Bold-Scotland is a five-year project, it stands for Bringing Out Leaders in Dementia. This name recognises that across Scotland many people of all ages and from all walks of life, including persons living with dementia, are already taking a lead, making a difference and finding their place in the ‘dementia world’. Bold believes that everyone should be able to flourish throughout their lives. We hope to grow a movement of leaders in communities across Scotland. We will challenge the common view of dementia as a personal tragedy shared only by close family members. We hope to replace this with the understanding that flourishing is achievable for everyone, that we are all living with dementia in different ways, and can all make positive contributions. Bold will bring these different types of leaders together on an equal footing. It is providing free leadership development opportunities to new and emergent leaders to help them develop their leadership skills and build stronger networks so that they can grow in confidence and have greater impact.
2. toilets
A Public Inconvenience Finding solutions which maximize the design and findability of accessible toilets when travelling. The aim is to explore and define the needs of disabled people with a range of impairments to use toilet facilities while travelling. Going to the toilet is a universal human need and a core consideration when travelling and accessing the community. Yet its private and sensitive nature renders it invisible in debates and actions to address social inclusion. Without accessible toilets, all other efforts to promote social inclusion will fall at the first hurdle. Barriers to accessing toilets while travelling can be wide-ranging and may vary from different conditions, making it difficult for the transport industry to meet these varied and often conflicting needs. This project asked people with a range of impairments to consider their top priorities and solutions for designing inclusive, accessible, and findable toilets that enable travel and participation. Us and our partners worked with a range of disabled co-researchers, gathering their own real-time, everyday experiences of finding and using toilets. By bringing together people with a range of physical and cognitive impairments their top priorities and solutions will emerge so that service providers can focus on these when designing and assessing their provision. The final dissemination gathering included a moving and insightful play performed by a handful of the co-researchers on the project. It was a chance to share solutions and to engage with key influencers and stakeholders and launch the ‘top 10 tips’ and the audit tool. It included an exhibition of the film and photographs collected by the co-researchers to share their individual findings. Find out more on the Toilets and Journeys website including the full project report videos and more.
3. Exploring the potential for counselling people with dementia
This project is working with DEEP, CrossReach and the British Association of Psychotherapists (BACP), UK. The project is funded by the Chief Scientist Office. Despite Scottish policy highlighting the emotional needs of people with dementia, psychotherapeutic interventions remain under-used and under-researched leaving people with dementia in need. Most therapists have no training/expertise in working with people with dementia, and typically, those working in dementia services have no counselling training. To solve this problem, ECRED researchers are working alongside people with dementia, carers, and therapy service providers, to undertake a literature review and a series of workshops to assess the interest, practicality and acceptability of counselling for people with dementia. Our work is gathering essential primary data to develop the theory required to underpin the implementation of future dementia-friendly counselling interventions. We work across the following core themes: social relationships and friendships, peer support, emotions and counselling, living and dying with dementia, dementia and design, marginalised groups with dementia (including people with intellectual disabilities), risk and resilience, working with people who have dementia to understand their experience and possible approaches to impact policy, practice and society.

What are the principal values that motivate and maintain the work in your research group?

Our values are grounded in the inclusion and active involvement of everyone in ECRED – people living with dementia as experts by experience are central to our work. Our PhD and early career researchers are pivotal to the values and activities in the research group.

Please mention some of the ideas and research that your research group has initiated, elaborated, and/or published

Have a look at the following links!

The video below provides more information on the project A Public Inconvenience.

A good example of more theoretical/methodological work would be the Thistledown Project.

For more resources have a look at the online social leadership programme Bringing Out Leaders in Dementia (https://bold-scotland.org).

 

logo of ‘bold’

How can we get in touch (Facebook group, website, etc.) with this research group/centre and its work?

Write an email to Prof Heather Wilkinson or visit our website!

Do you have any upcoming events you would like to share with us? 

We have a monthly reading group and a monthly ECRED informal meeting – both open to anyone! The reading group is run by Rosie Vincent, the informal one by the PhD students.

Anything else you think should be known about this research centre?

We are an externally facing centre – most of our work is in partnership with external organisations and we have a strong PhD community – very active!

 

 

Did you miss our previous interviews of this blog series? Read more about the Scottish Collaboration for Public Health Research and Policy Centre here and about the Centre for Homelessness and Inclusion Health here.

 

 

 

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