Earlier this year, the Scottish Dementia Research Consortium launched our Annual Report.

In addition to providing an overview of all dementia and brain health research in the past year, we also have a section in the report dedicated to each of the SDRC research themes. Professor Debbie Tolson, Dr Leah Macaden, PhD candidate Nancy Brown and Dr Louise Ritchie from the Living with Dementia theme, have provided an overview of research happening across Scotland relating to this theme. You can read this excerpt from the report below. 

Summary of the theme

Research within the Living with Dementia theme generates new knowledge about life with dementia. It includes research leading to innovations that address everyday challenges, enhance dementia care, improve services and increase understanding of the condition that drives dementia education excellence and informs policy. 

The scope of Living with Dementia research extends from diagnosis across all stages of the illness. It seeks to understand the experiences, knowledge and skill needs of people who are diagnosed, their family and friends and the practitioners and volunteers who support them both informally and formally. Importantly our research embraces a diversity of perspectives, living circumstances and care situations.

Accordingly, it is important that we understand the diversity of experiences associated with dementia so we can support, care for and enable all people affected by dementia to live the best life possible. A key imperative is for our research to be helpful through its application within policy, practice and dementia education.  The applied research undertaken by SDRC members associated with this theme has the potential for immediate impact and influence. 

Developments within theme

There is much happening across the Living with Dementia thematic area in Scotland. Pivotal to research achievements and the future of dementia research in Scotland is collaboration, research involvement and creative research disseminations that make our science both meaningful and accessible.

Research centres and institutions have their own priorities and signature research. This has been reflected in the breadth of research topics evident within the 62 research publications authored by SDRC members published in 2022.  These outputs give insight into the scale of the Scottish dementia research landscape and ecosystem associated with this theme. The SDRC community adds value through its collaborative and nurturing ethos, with a focus on supporting early career researchers. A core undertaking of the Living with Dementia co-ordinating group is to support people living with dementia and family carers with research involvement. This embodies the inclusive principles set out in Scotland’s Brain Health and Dementia Research Strategy. Research with people with lived and living experience of dementia is one of our SDRC priorities.

Accordingly, we work closely with the Scottish Dementia Working Group (SDWG) and National Dementia Carers Action Network (NDCAN) research groups to ensure we understand their research interests and priorities. During Dementia Awareness Week 2023, Professor Debbie Tolson and Dr Louise Ritchie will be exploring with SDWG their forward collaborative research agenda and what SDRC can bring to their table. This builds on previous work undertaken with NDCAN who identified ‘advanced dementia and keeping a relative with advanced dementia safe’ as a family carer research priority. NDCAN member Elaine Deehan, along with academics Drs Anna Jack-Waugh, Nick Jenkins and Suzanne Heron, secured a University of the West of Scotland Studentship to progress this piece of research. Congratulations to Margaret Kyeremeh who secured this competitive doctoral studentship to study the experience of managing risk from the perspective of family carers of people living with advanced dementia.

Co-production research with people living with dementia and family carers as equal partners in the research process has been developing throughout the theme. Dr Tom Russ and his team at the University of Edinburgh have recently completed a co-produced project called ‘Sharing the Diagnosis of Dementia in the Post-Covid Clinic: Patient and Practitioner Perspectives’. The project team spoke with people who were given a diagnosis of dementia by phone/videocall during the COVID-19 lockdowns and also the professionals who had to practice in this way. A scientific article is forthcoming, but two animated films (voiced by a member of their lived experience group) are currently available summarising the findings – one aimed at the general public and one at professionals, as well as a podcast series outlining the process of the research and its broader context. They are all available through the project’s website.  https://www.alzscotdrc.ed.ac.uk/dementia-diagnosis-post-covid


In another co-produced project, Drs Louise Ritchie, Laura Lebec and team at the University of the West of Scotland are co-producing an intervention using career guidance approaches to support people who are diagnosed with dementia at working age.

At the University of Stirling, Dr Paula Jacobs and team have been funded by Dunhill Medical Trust to explore the experiences of couples with a learning disability when one partner has dementia. The idea for this study came from/was inspired by a married man with a learning disability who has dementia and who shared his concern about how the diagnosis may impact on his relationship. The project team were finalists in the Diversity through Education category in the Herald & GenAnalytics Diversity Awards and were highly commended in the University of Stirling Research Culture Awards.


Thanks to RS MacDonald Charitable Trust funding, the University of the West of Scotland has a dedicated institutional seedcorn fund. The first round of funding  supports four Principal Investigators, new to dementia research to undertake preliminary studies focused on Living the Best Life Possible with dementia.  These new projects are being led by sports scientists, mental health nurses and adult nurses and teams who have joined us as new members of the SDRC community. They are investigating issues around physical health, rural care, young onset dementia care and dementia friendly walking football.


Another new preliminary study that got underway in 2022 is being undertaken as a form of co-operative research. By co-operative research we mean research that is supported by contributions in kind rather than through direct funding. This study has been planned by an inclusive Scottish Dementia Working Group/National Dementia Carers Action Network/SDRC research team and is being supported by Alzheimer Scotland, University of the West of Scotland and the University of Edinburgh. The idea behind the research is to learn from the things that helped people with dementia and their families during COVID-19 lockdown. A scientific research proposal was collaboratively prepared following introductory research method workshops.  Subsequently the research team modified the Nominal Group Technique (NGT) to make it accessible for people with dementia. Trained facilitators with lived experience, supported by academics and doctoral students, will undertake a series of NGT interviews. Findings will be shared towards the end of 2023 and will feature in next year’s SDRC report.

At any stage in a researcher’s career, it is an accolade to have your research innovation and leadership recognised. In 2022, Dr Leah Macaden was honoured to receive a Fellowship of the American Academy of Nursing for Dementia Workforce Development and related studies.  Leah’s recent research also embraced co-creation, which underpinned the development of the care home educational innovation evaluated in a project funded by The Churchill Fellowship’s COVID-19 Action Fund.

Read the Annual Report 2021/22 in full here

Find out more about the SDRC research themes here