From carer to crusader - how this dementia expert is making a difference

When Sue Northrop signed up for a Masters in Dementia Studies at the University of Stirling, she was caring for her mother with dementia and finding a new role in life as a community activist. Nine years on, she fronts one of the most progressive dementia groups in the country.

Woman in front of building

When Sue Northrop signed up for a Masters in Dementia Studies at the University of Stirling, she was caring for her mother with dementia and finding a new role in life as a community activist.

Nine years on, she fronts one of the most progressive dementia groups in the country. Dementia Friendly East Lothian is dedicated to promoting the rights and citizenship of people living with dementia and care partners, one free of stigma.

“When I began Dementia Friendly East Lothian, I wanted Mum and me to be welcomed in local shops and cafes. We wanted every cafe to be dementia-friendly,” says Sue. Almost ten years later, the group’s model is embedded in East Lothian’s Dementia Strategy. And, says Sue: “People living with dementia and carers are seen, heard and making a difference, and leading our work. Professionals are working with us in new ways.”

three women outside a church Members of Dementia Friendly East Lothian at their Meeting Centre.

The need and the potential to make a difference are great, not just in the region Sue’s group operates in, but across the country and the world. It is estimated that the number of people living with dementia worldwide will double in the next 20 years. Two-thirds of people living with dementia live in the community. 

For that reason, the University of Stirling’s MSc in Dementia Studies – the longest-running online postgraduate qualification in its field – is aimed at not just professionals working in this field, but volunteers and carers too. 

Sue cared for her parents, John and Mary, who both lived with dementia, for about 20 years. But caring took its toll and Sue left her civil service job in 2013 to support her mum.  Sue set up Dementia Friendly East Lothian in 2014 and started her MSC the next year, graduating in 2017. 

Today, Dementia Friendly East Lothian has five staff and a meeting centre, opened in 2022 thanks to a grant from the East Lothian Health and Social Care Partnership. 

Sue says: “Dementia Friendly East Lothian and all we have achieved would simply not have happened without me doing the MSc in Dementia Studies at Stirling.  As I studied and wrote essays, I was developing our workplan and sharing what I’d learned to demonstrate what could be done and why our approach works.  The course opened my eyes to how I could apply my skills and learning to being a carer and helped me create an approach based on research, theory and lived experience.“

Head and shoulders shot of woman in red top
Louise McCabe
Professor in Dementia Studies at the University of Stirling
People with dementia from across the UK play an active role in the development and delivery of our programme. This collaborative work supports the underlying ethos of human rights and participation that shapes the course.

The University of Stirling’s MSc in Dementia Studies celebrates its 20th birthday this year. It gained a 97% satisfaction rate from students in the Postgraduate Taught Experience Survey 2022.   

The University of Stirling is also home to the internationally renowned Dementia Services Development Centre (DSDC).  

An innovative e-learning course with students and alumni from across the world - including Europe, Asia, North America, the Middle East, Africa, Australia and Jamaica - the MSc provides in-depth research-based content run by academics whose research is helping to shape dementia care policy worldwide. And the best bit? People with dementia act as course advisors.  

Louise McCabe, Professor in Dementia Studies at the University of Stirling, said: “People with dementia from across the UK play an active role in the development and delivery of our programme. This collaborative work supports the underlying ethos of human rights and participation that shapes the course and by sharing their stories and talking about their experiences people with dementia directly influence and enrich the students’ learning.“ 

She added: “It’s so rewarding to see groups like Dementia Friendly East Lothian being created as a direct result of our MSc in Dementia Studies.”

Interested in studying for a MSc in Dementia Studies at Stirling? Visit https://www.stir.ac.uk/courses/pg-taught/dementia-studies-online/

Two women and man standing Professor Louise McCabe (left) and Dr Grant Gibson from the University of Stirling with (centre) Sue Northrop.