OUR RESEARCH

The Alzheimer Scotland Centre for Policy and Practice (ASCPP) Open Centre Seminars are a regular knowledge exchange series designed to connect research, policy, practice and lived experience.

The seminars provide a collaborative space for researchers, practitioners, people living with dementia, family carers, students and members of the public to engage with emerging research, innovative practice and contemporary policy developments in dementia and ageing.

The programme has supported interdisciplinary collaboration, promoted co-production and facilitated the sharing of evidence that can inform policy, practice and future research. Through these events, the Centre has engaged hundreds of participants and strengthened connections between the University, community partners and the wider dementia sector.

Many sessions are recorded and freely available to support wider dissemination and continued learning. Please see our youtube channel for previous recordings Alz ScotCPP - YouTube.

Everyone is welcome to attend the webinars. If you would like to join our seminars please email ASCPP Director louise.ritchie@uws.ac.uk

Title: Improving the health and well-being of older people with cognitive frailty and dementia in prison

Funders: Dunhill Medical Trust

Status:   Complete

Start/end: – 28/12/23

Project description

Further work to support implementation and improvement of pre and post diagnostic dementia care is ongoing. The aim is to try and address the disjuncture’s between prison and community healthcare referral systems and clarify responsibilities that prevents a person living in prison with a suspected dementia being diagnosed. Working collaboratively with Meeting Centres Scotland innovative post diagnostic support is being piloted and evaluated in one prison.

A PhD studentship commencing in October 2026 will explore the treatment gap for people with suspected dementia living in prison.

An NIHR/ESRC/Alzheimer’s Society Network Plus funded project (2025-27) is exploring the extent to which developed dementia care pathways are being implemented across UK prisons. The project will also assess implementation barriers nd facilitators.

Research Team 

• PI: Dr Rhoda MacRae, Reader, University of the West of Scotland (UWS)

• Co-i: Prof Debbie Tolson, Director of the Alzheimer Scotland Centre for Policy and Practice, UWS

• Co-i: Dr James Taylor, Head of Division and Senior Lecturer, UWS

• Co-i: Dr Kirstin Anderson, Lecturer in Criminal Justice, Napier University

• Dr Tom Russ, Consultant of Old Age Psychiatry and Director of the Alzheimer Scotland Dementia Research Centre, University of Edinburgh

• Prof Lindsay Thompson, Professor of Forensic Psychiatry, University of Edinburgh and Medical Director of the State Hospitals Board for Scotland

• Dr Natalie Chalmers, Research Associate, University of Edinburgh

Visit the dedicated project website to watch the animation, read the reports and see the co-produced model of care and healthcare pathway designed to support pre and post diagnostic care in prison.

Dementia in Prisons Website

Publications

MacRae, R., Chalmers, N., Tolson, D., Taylor, J., Anderson, K., Thomson, L., and Russ, R. (2024). Pre and post diagnostic dementia care in four Scottish prisons. Health and Justice. https://doi.org/10.1186/s40352-024-00294-5

MacRae, R., Macmillan, T., Duffy, K., Welstead, M., Dunlop, C., Cheyne, J., & Russ, T. (2025). How feasible is it to introduce routine cognitive screening in a prison setting?: a six-stage scoping review. The Journal of Forensic Psychiatry & Psychology, 1–22. https://doi.org/10.1080/14789949.2025.2530700

MacRae R, Chalmers N, Tolson D, et al. (2025). The care experience of people with diagnosed or suspected dementia living in prison: A case study approach. Dementia. https://doi.org/10.1177/14713012251338873

Title

DEVELOPMENT AND REFINEMENT OF THE ASCPP CARERS’ ACADEMY: A CO-OPERATIVE RESEARCH AND SERVICE DEVELOPMENT INITIATIVE

Funders

Alzheimer Scotland

Start Date

February 2020

Status

Ongoing

Project Team

Dr Anna Jack-Waugh (UWS), Dr Rhoda MacRae (UWS), Jane Mimnaugh, Wendy Chambers, Lynne Murray, Lynne Wheat Simpson, Alzheimer Scotland and local NHS and Health and Social Care Partnership colleagues.

Synopsis

The Alzheimer Scotland Centre for Policy and Practice (ASCPP) Carers’ Academy is an innovative, university-based dementia education programme that supports family members caring for a relative living with dementia. Developed through a partnership between the University of the West of Scotland, Alzheimer Scotland, NHS services and Health and Social Care Partnerships, the Academy provides evidence-informed, practical, skills-based education to strengthen carers’ confidence, knowledge and ability to sustain family caring.

The programme focuses on:

• Enhancing knowledge and understanding of dementia and its impact.

• Developing practical skills in the fundamentals of dementia care.

• Facilitating peer-to-peer learning and support.

• Promoting emotional wellbeing and resilience among family carers.

• Strengthening links between carers, health and social care services, and community resources.

Grounded in the ASCPP's relationship-centred Care Empathia approach and informed by trauma-informed principles, the Academy recognises family carers as partners in care and integrates education with ongoing emotional and practical support. Learning includes experiential activities focused on communication, eating and drinking, mobility, oral health, personal care and planning for future care needs.

By 2026, the programme has supported more than 600 family carers across four hubs, demonstrating substantial regional impact and contributing to Scotland's dementia education and support infrastructure.

A programme of co-produced evaluation and implementation research has accompanied the Academy since its inception.

Key Publications

Jack-Waugh, A., Holland, S., MacRae, R., Mimnaugh, J. & Tolson, D. (2024). Facilitating Family Carer Dementia Education: We All Need to Learn. Healthcare/Dementia Education research. https://doi.org/10.3390/healthcare12202096

MacRae, R., Jack-Waugh, A., Tolson, D., Harkess-Murphy, E., Mimnaugh, J. & Holland, S. (2026). Coproducing an Evaluation of a Dementia Education Programme for Family Carers. Health & Social Care in the Community, 2026, https://doi.org/10.1155/hsc/3500517 

Awards

• Best Educational Initiative, Scotland's Dementia Awards (2019)

• Innovation in Education Award, Mental Health Nursing Forum Scotland (2019)

• Contributed to the ASCPP's wider recognition through the Collaborative Award for Teaching Excellence (CATE) and subsequent community impact awards.

The ESRC funded Working with Dementia (WWD) Network Plus will create a research network that includes the views and real-world experiences of people living or working with dementia and other non-academic stakeholders, such as employer representatives, in the research process. The aim is to shift our current understanding of working with dementia, drive positive change, and open new horizons to enhance labour market experiences for those affected by dementia. By doing so, we aspire to play a pivotal role in alleviating the social and financial inequalities associated with dementia in society. Working with Dementia research requires an integrated understanding of the individual, organisational, societal, and economic factors at play to develop innovative and impactful research solutions.

Find out more about Working with Dementia Netowrk Plus

Working with Dementia

Below are links to resources developed from an Alzheimer’s Society funded grant which provide practical support and guidance on dementia and employment:

Information for Employees (pdf)

Information for Colleagues (pdf)

Information for Employers (pdf)

Information for HR Professionals (pdf)

Work and Dementia (pdf)

Title

Guidance for Life, Work and Career: Co-produced Career Guidance for People Living with Dementia.

Research Team

Professor Louise Ritchie, Dr Laura Lebec, Emeritus Professor Debbie Tolson, Professor Valerie Egdell (Northumbria University), Prof Jill Stavert (Edinburgh Napier University) Dr Emma Bolger, Professor Katie Brittain

Overview

The aim of this research was to co-produce and field test an innovative career guidance and development approach to supporting people living with dementia post-diagnosis. The intervention targeted people living with dementia who were in, or had recently left, paid employment to empower them to make informed choices about their career including leaving employment, retaining employment or seeking alternative employment or unpaid occupation.

Together with career guidance professionals and people living with dementia, we co-produced a new approach called Guidance for Life, Work and Career. This findings highlighted how the approach supports decision-making, promoted feelings of hope and autonomy and could be a useful tool for people living with dementia who are diagnosed whilst of working age.

Watch the video we co-produced on dementia in the workplace here: https://youtu.be/gIFAykUByFg?si=ZBOfw8wgdJyKqYLr

Publications

Summary Report (PDF) (to come)

Project title

UWS Dementia Seedcorn Fund: Building the capability and capacity of UWS researchers to undertake applied dementia research.

Funder

The R S Macdonald Charitable Trust

Status

Current

Team

Dr Rhoda MacRae and Dr Anna Jack-Waugh

Project overview:

The inaugural UWS Institutional Dementia Seedcorn fund (2022-25) provided a unique opportunity for UWS researchers model and or test innovative ideas and interventions that could support dementia care and those living with dementia to live the best life possible. It grew capacity for innovative interdisciplinary applied dementia research. Seven research teams lead by ECRs from across UWS were funded to carry out innovative research to improve the lives of people living with dementia. The fund has had a major positive impact, leading to new scientific publications, community engagement, stronger professional networks, and further research investment.

With follow on funding (2027-28) the fund will support a further cohort of ECRs to apply for grants under two thematic areas: Living the Best Life Possible and Dementia Education for All. This will build on the research strengths of the ASCPP and address known gaps in applied dementia, dementia care and dementia educational research.

Key publications

Hayes, L D. et al. (2025) Body Composition, Vascular Health, Cardiorespiratory Fitness, Lung Function, Muscle Architecture, and Physical Activity in People with Young Onset Dementia: A Case-Control Study. The American Journal of Medicine. DOI: 10.1016/j.amjmed.2024.08.027

Smith, M., Dickinson, N., Sculthorpe, N., Ritchie, L., and Kimble, R. (2025) Having Their Cake and Eating it Too: An Exploratory Mixed-Methods Study on the Dietary Behaviours of Family Carers of Persons with Dementia. Dementia. doi:10.1177/14713012251355832

Holland, S., Jackson, L. Manson, K and Mullay, S. (2026) Specialised advanced nurse practice bringing dementia expertise to remote and rural communities. Journal of Community Nursing.https://www.jcn.co.uk/journals/issue/08-2026/article/specialised-advanced-nurse-practice-bringing-dementia-expertise-to-remote-and-rural-communities

Project Title

Trauma Informed Approaches in Dementia (TrIAD): Understanding trauma within family based dementia care: an analysis of Telephone Helpline Calls

Researchers

Dr Eileen Harkess-Murphy, Dr Margaret Brown, Dr Rhoda MacRae, Jennifer Hall (Alzheimer Scotland, now Diabetes UK)

Status

Complete 2023

Funders

Scottish Neurological Research Fund (SNRF)

Project Overview

Dementia helplines play an important role in providing emotional support, information and practical guidance, yet little was previously known about the extent to which these services operate in a trauma-informed way.

This project explored the delivery of trauma-informed support within Alzheimer Scotland's National Dementia Helpline, the United Kingdom's only 24-hour dementia helpline. Using a retrospective mixed-methods design, we analysed 198 anonymised call logs collected during the COVID-19 pandemic to examine how trauma-informed principles were reflected in interactions between callers and helpline staff.

As one of the first studies to examine trauma-informed approaches within a dementia helpline setting, the project provides important insight into how these principles can be embedded within dementia support services. The findings demonstrate the value of trauma-informed communication in responding to distress, reducing feelings of isolation and supporting people affected by dementia to navigate complex challenges.

Ultimately, this work contributes to the growing evidence base for trauma-informed dementia care and highlights opportunities to strengthen support services for people living with dementia, family carers and those who provide frontline support.

Publication

Harkess-Murphy, E., MacRae, R., Brown, M., & Hall, J. (2026). Trauma-Informed Support Within a Dementia Helpline: A Retrospective Framework Analysis of Call-Logs. JMIR Formative Research. doi: 10.2196/71746

Project Title

Socioeconomic Determinants of Alzheimer’s Disease: Exploring Cognitive Health Disparities in Underrepresented Ethnic Groups

Research Team

Dr Eileen Harkess-Murphy, Dr Ann Abraham Daniel (University of Abertay), Dr Tahir Mahmood, Dr Anna Jack-Waugh, Dr Vinodhini Murugavel, Dr Farah Jaber and Dr Gary Litherland.

Status

Ongoing 2026-2027

Funders

Race Against Dementia Data Challenge II (Brain Health ARC)

Project Overview

Alzheimer's disease risk is shaped not only by biological factors, but also by the social and economic circumstances in which people live. Factors such as education, employment, income and environment can influence opportunities for healthy ageing and may contribute to inequalities in cognitive health. However, much of what we know about these relationships comes from studies involving predominantly White populations, leaving important gaps in our understanding of dementia risk within underrepresented ethnic groups.

This project, supported by the Race Against Dementia Data Challenge II, brings together a multidisciplinary team of researchers to examine how socioeconomic factors are associated with cognitive health and dementia risk across diverse populations.

Using data from the English Longitudinal Study of Ageing (ELSA) and the Bio-Hermes dataset, we are developing a novel socioeconomic index to explore the relationship between social circumstances and cognitive status, including healthy ageing, mild cognitive impairment and Alzheimer's disease. By comparing patterns across different populations, including underrepresented ethnic groups, the project aims to identify disparities that may contribute to unequal dementia risk.

A key innovation of the project is its integration of social, clinical and biological perspectives. The findings will help identify priority areas for future research examining how socioeconomic experiences may interact with biological pathways associated with cognitive decline and dementia.

Brain Health Arc Website: Data Challenges - BRAIN HEALTH ARC

Project Title

Brain Health Arc Data Challenge I: Exploring the Bio-Hermes Clinical Dataset for Alzheimer's Biomarker Discovery

Research Team

Dr. Farah Jaber-Hijazi, Dr. Gary Litherland, Dr. Luca Kozma, Dr. Bianca Hatin (University of Regina), Dr. Constantina Papadopoulou

Status

2024 - ongoing

Project Overview

Alzheimer's disease (AD) is the most common cause of dementia, and its progression is shaped by both biological and demographic factors. Earlier diagnosis, better screening and effective prevention all depend on understanding how these factors interact. This project uses the Bio-Hermes clinical dataset, which spans three distinct cohorts (cognitively normal, mild cognitive impairment and mild AD), to explore the biological mechanisms that drive AD pathology.

The project aims to assess how established blood biomarkers such as phosphorylated tau and other factors change across the stages of cognitive decline, and whether they could predict progression from healthy ageing to mild cognitive impairment and AD. It also asks whether biological markers can predict specific clusters of cognitive and behavioural symptoms, and how lifestyle and demographic factors such as handedness relate to disease markers. Finally, it mines participants' proteomic profiles for novel candidate biomarkers.

By bringing molecular and demographic data together in a cross-disciplinary approach, the project seeks fresh insights that could inform new strategies for screening, earlier diagnosis and prevention.

Title

Brain Health Arc Data Challenge II: Investigation of Mid-Life Biomarkers and Demographic Risk Factors in the PREVENT Cohort with Cross-Cohort Comparison Using the Bio-Hermes Dataset

Research Team

Dr. Farah Jaber-Hijazi, Dr. Shahid Awan, Atul Antony (MSc student), Dr. Gary Litherland, Dr. Ann Abraham Daniel, Dr. Constantina Papadopoulou

Status

2026 - ongoing

Project Overview

Identifying the earliest biological and lifestyle signals of dementia is key to spotting at-risk individuals sooner and developing patient-centred prevention strategies. Building on Data Challenge I, which examined biomarker and demographic patterns across cognitively normal, mild cognitive impairment and mild Alzheimer's disease cohorts in later life (ages 60 to 85), this project asks whether the same signals are already detectable in mid-life, decades before symptoms appear.

Using the PREVENT cohort of adults aged 40 to 59, the project aims to test whether established blood biomarkers, novel candidates and demographic factors such as handedness emerge early in people at higher risk of dementia. It will also explore how genetic risk, lifestyle factors such as smoking, alcohol, exercise and diet, and proteomic profiles relate to changes in cognitive scores over a two-year follow-up.

By pairing PREVENT's mid-life, genomic and longitudinal strengths with the diversity of Bio-Hermes, the project seeks to understand how mid-life risk factors shape later-life biomarker profiles, and whether novel signals hold genuine diagnostic or preventative value.

LINK TO BRAIN HEALTH ARC WEBSITE: Data Challenges - BRAIN HEALTH ARC

Research Team: Dr Louise Ritchie (UWS), Professor Debbie Tolson (UWS), Dr Valerie Egdell (Northumbria University), Prof Jill Stavert (Edinburgh Napier University) Emeritus Professor Mike Danson (Heriot-Watt University) 

Programme title: Dementia and employment

Status: Ongoing

Funders: Alzheimer’s Society, Carnegie Trust for the Universities of Scotland

Overview: Approximately 40,000 people in the UK are diagnosed with dementia whilst of working age, but little attention is afforded to the impact this has on employment. The aim of this developing programme of research is to understand the experience of people with dementia who are diagnosed whilst still in employment and the support required for employees, employers and families.

Study 1: Dementia in the workplace: the potential for continued employment post diagnosis was seminal case study research on dementia and employment, carried out in 2013 - 2015 and funded by the Alzheimer’s Society. This research was the first study to explore the experiences of people with dementia who are still employed and highlighted that people with dementia can continue to work post diagnosis, although support to continue employment is complex and many do not get the support required, with many losing employment pre or at the point of diagnosis as a result. Project Summary https://www.uws.ac.uk/media/4021/ritchie-dementia-workplace-booklet.pdf

Study 2: Employers’ responses to dementia in the workplace was funded by Carnegie Trust and led by Edinburgh Napier University with UWS collaboration.  This mixed method survey and interviews with employers highlighted gaps in knowledge and understanding of dementia and its effects in the workplace.  Project Report https://www.napier.ac.uk/~/media/worktribe/output-1154874/employer-responses-to-dementia-in-the-workplace-in-scotland.pdf

Study 3: Dementia, Work and Employability was a secondary analysis of data sets collected across the two previous projects, providing a theoretical perspective on dementia in the workplace, using the lens of Sen’s Capability Approach. The findings of this study outline the range of personal resources, supports and environments required to enable positive employment-related experiences and practices for people with dementia.

Dissemination Grant: A dissemination grant from Alzheimer’s Society provided the funding to produce a series of short evidence-informed resources to provide information and signposting to support people with dementia, their employers and family members with employment post diagnosis. These resources can be downloaded below.

Information for colleagues

Information for employees

Information for employers

Information for HR

Publications:

Egdell, V., Cook, M., Stavert, J., Ritchie, L., Tolson, D., & Danson, M. (2019). Dementia in the workplace: are employers supporting employees living with dementia?. Aging & Mental Health, 1-8.

Ritchie, L., Banks, P., Danson, M., Tolson, D., & Borrowman, F. (2015). Dementia in the workplace: a review. Journal of Public Mental Health.

Ritchie, L., Tolson, D., Danson M. (2017) Dementia in the workplace case study research: understanding the experiences of individuals, colleagues, managers and family. Ageing and Society. https://doi.org/10.1017/S0144686X17000563

Ritchie, L., Egdell, V., Danson, M., Cook, M., Stavert, J. and Tolson, D. (2020) Dementia, work and employability: Using the Capability Approach to understand the employability potential for people living with dementia. Work, Employment and Society https://doi.org/10.1177/0950017020961929

Funders

RS Macdonald

Team

Liz Carlin, Eilidh Macrae, Rhoda MacRae

Overview

Dementia friendly walking football (DFWF) is an increasingly popular way to encourage men living with dementia to engage in a form of physical activity (PA) traditionally attractive to them, yet no published empirical evidence exists regarding its social impact.

The first project evaluated the social impact of a pilot, monthly DFWF programme on the lives of men living with dementia and the people who care for them. Mixed qualitative methods, including semi-structured interviews and observation.

The second project gained an in-depth understanding of the lived experience of people living with dementia in accessing and taking part in walking football, their perception of the benefits it may provide and the challenges faced by participants, their families and session providers.

A key recommendation from the second project argued more specific coach education in working with people living with dementia was required to support their better communication between them and participants.

In 2024, match funding by the John Mather Trust and the UWS VC studentship fund facilitated a PhD study entitled ‘Developing Education Resources for Sport and Physical Coaches working with people living with Dementia’

Publications

MacRae, R., Macrae, E and Carlin, L (2020) Modifying walking football for people living with dementia: lessons for best practice. Sport in Society. DOI: 10.1080/17430437.2020.1825383

Video Report https://www.youtube.com/watch?v=5ijt_zokF7Y

PROJECT TITLE: AN EVALUATION OF THE DEMENTIA INCLUSIVE SINGING NETWORK AND THE EXPERIENCE OF GROUP SINGING FOR PEOPLE LIVING WITH DEMENTIA AND FAMILY CARERS.

Researchers: Dr Louise Ritchie, Dr Margaret Brown, Carol Beckwith and Dr Stuart Wood (Independent Health and Music Researcher).

Funders: Life Changes Trust

Status: Ongoing

Date Commenced: April 2019

Overview:

The Dementia Inclusive Singing Network was established in 2019 by Luminate to promote and support singing activities for people living with dementia throughout Scotland. The evaluation aims to: 

Understand the impact of dementia inclusive singing for people with dementia and unpaid carers.
Assess the working of the Dementia Inclusive Singing Network in terms of its ability to raise awareness of dementia and improve access to the arts for people affected by dementia within Scotland.
Explore the best ways of working for the Network

Using a realistic evaluation methodology, the project will draw on a range of data sources including video footage of choirs and singing activities, project documents and interviews with team members, choir leaders and choir members.

PROJECT TITLE: DEVELOPMENT, DELIVERY AND EVALUATION OF A TRAINING PROGRAMME TO PREPARE NHS AND SOCIAL SERVICES DEMENTIA CHAMPIONS AS CHANGE AGENTS.

Funders:  Scottish Government

Project Status:  Dissemination Phase

Project Team:  Dr Anna Jack-Waugh, (Alzheimer Scotland Centre for Policy and Practice, UWS), Dr Rhoda MacRae, (Alzheimer Scotland Centre for Policy and Practice, UWS), Dr Margaret Brown, (Alzheimer Scotland Centre for Policy and Practice, UWS), Dr Louise Ritchie, (Alzheimer Scotland Centre for Policy and Practice, UWS), Dr Raymond Duffy, (Alzheimer Scotland Centre for Policy and Practice, UWS)  Jo Oliver Hartley, (School of Health and Life Sciences. UWS), Dr Barbara Sharp, (Alzheimer Scotland), Jenny Henderson, (Alzheimer Scotland Centre for Policy and Practice, UWS) 

Overview: In recognition of the often poor experience of people living with dementia in general hospitals and the lack of dementia curricular content of health and social care professionals, the Scottish Government commissioned a National Dementia Champions Programme for qualified health and social care professionals in 2011. Ten cohorts were delivered up to 2019 by a team of dementia specialist from University of the West of Scotland, Alzheimer Scotland, NHS Boards and Scottish Social Services Council. The six-month programme has a blended learning approach, including five face to face study days and three assignments. A description of the programme and ongoing evaluation is in Banks et al. (2014) and Jack-Waugh et al. (2018).

The ongoing research demonstrated that the Dementia Champions programme significantly improves attitudes and knowledge of dementia and increases participants' feelings of self-efficacy in delivering person-centred dementia care. A ProfD study into the experience of being a dementia champion illuminated the long-term negative impact of knowledge and skills gaps in dementia education and on people living with dementia and health and social care professionals. This study has also led to developing a learner, experience, research and practice centred approach to dementia workforce education called SCOTIA, with people with dementia at the centre.

Publications:

Banks, P., Waugh, A., Henderson, J., Sharp, B., Brown, M., Oliver, J. & Marland, G. 2014. Enriching the care of patients with dementia in acute settings? The Dementia Champions Programme in Scotland. Dementia (London) [Online], 13. Available: http://dx.doi.org/10.1177/1471301213485084

Brown, M., Waugh, A., Sharp, B., Duffy, R. & Macrae, R. 2018. What are dementia champions and why do we need them? Dementia [Online], 17. Available: http://journals.sagepub.com/doi/abs/10.1177/1471301217743413

Jack-Waugh, A., Ritchie, L. & Macrae, R. 2018. Assessing the educational impact of the dementia champions programme in Scotland: Implications for evaluating professional dementia education. Nurse Education Today [Online]. Available: http://www.sciencedirect.com/science/article/pii/S0260691718306828

Waugh, A., Marland, G., Henderson, J., Robertson, J. & Wilson, A. 2011. Improving the care of people with dementia in hospital. Nursing Standard, 25, 44-49.

PROJECT TITLE: MULTISPECIES AND DEMENTIA RESEARCH NETWORK

Researchers: Dr Nick Jenkins, Dr Anna Jack-Waugh and Dr Louise Ritchie

Funders: Wellcome Trust

Status: Ongoing

Date Commenced: October 2019

Overview: This project aims to set up and establish the Multispecies Dementia Network. Drawing on current research from across the humanities, social sciences and biological sciences, the network will chart the contours of an alternative (multi-species) perspective, in which relations between human and non-human bodies becomes the primary lens for understanding dementia and its effects. The Network, 60 members representing 16 disciplines internationally. As we continue to develop the network, we have launched a monthly newsletter, blog series, and are developing best practice guidance for multispecies dementia care.

Publications: In submission

PROJECT TITLE: DEVELOPING FAMILY AND COMMUNITY CAPACITY TO PROVIDE EVIDENCE-INFORMED ADVANCED DEMENTIA CARE, AND REDUCE RISKS OF DEMENTIA-RELATED ELDER ABANDONMENT AND ABUSE.

Funders: Scottish Funding Council Global Challenges Research Fund 2018-19

Research Team: Professor D Tolson¹ , Professor E Sanatombi Devi², Dr L Ritchie¹, Dr A Jack-Waugh¹, Dr V Binil²,  J Henry², CS Martis², Dr A George².

¹The University of the West of Scotland, UK.

²Manipal College of Nursing, Manipal Academy of Higher Education. India.  

Synopsis: There are 4 million people living with dementia in India and an urgent need to establish dementia education and care aligned to the Global Sustainable Development Goals.   Advanced dementia within India is a hidden problem, which places individuals and their sometimes-young carers at high risk of poverty and other inequalities. There is an immediate need to develop practical and theoretical understanding among practitioners, policy decision-makers and the public about advanced dementia alongside an understanding of advanced dementia related abuse and abandonment. This mixed method project has begun to explore the experiences and vulnerabilities of people affected by advanced dementia, to establish the principles to inform culturally sensitive dementia education linked to care.

Methods used to collect data included:-

• review of research literature
• desk based research to map local services and access public health data
• focus groups to explore the experience of family care giving
• educational gap analysis
• community co-design conversations and user acceptability questionnaires exploring relevance and cultural sensitivity issues of an existing research based training resource UWS-Class in the Bag-Dementia.

Publications:

Ritchie, L., Jack-Waugh, A., Devi, E. S., Binil, V., George, A., Henry, J., ... & Tolson, D. (2020). Understanding family carer experiences of advanced dementia caregiving in India: towards a vision for integrated practice. Journal of Integrated Care. https://doi.org/10.1108/ JICA-02-2020-0006

Project reports:

Dementia Services and Public Health Data India

Executive Summary Report

The experience of Advanced Dementia in India

Advanced Dementia Education

PROJECT TITLE: BEING HOME

Researchers: Dr Margaret Brown, Steven Tolson (consultant) Dr Louise Ritchie, Dr Kirstin James, Dr David Kelly (BRE Scotland), Professor Debbie Tolson.

Status: Completed 2018

Funders: Life Changes Trust

Project overview: The first report to bring together housing and dementia. The report included a comprehensive overview of the current housing situation for people affected by dementia including a range of housing options, possible solutions, services and supports. The report was commissioned by the Life Changes Trust and Angus Care and Repair. Key concerns included the lack of joined up policy, insufficient appropriate new housing and a lack of preparation and readiness for future housing needs. The report highlights a range of adaptations, new technologies and best practice that might offer some solutions.

Full report is available here

Summary of report is available here

PROJECT TITLE: GRACE NOTES

Researchers: Dr Margaret Brown, Carol Beckwith, Jim Prime, Prof Debbie Tolson

Status: Completed.

The Grace Notes is an interdisciplinary learning project bringing students from Nursing and music and song writing together with people with dementia. The students pooled their expertise and creative skills to capture stories of individuals whose voice may become lost to others and to turn these stories into songs. The result was six new songs inspired by the real life experiences shared during the workshops. To hear the six Grace Notes songs created click here. The project was awarded the overall winner in the Mental Health Nursing Forum Scotland Awards

PROJECT TITLE: INTERPROFESSIONAL EXPERIENTIAL LEARNING (IPE) SOLUTIONS: EQUIPPING THE QUALIFIED DEMENTIA WORKFORCE TO CHAMPION EVIDENCE INFORMED IMPROVEMENT TO ADVANCED DEMENTIA CARE AND FAMILY CARING (PALLIARE)

Funders: Erasmus+ 2014 Key Action 2 (KA2), Strategic Partnerships

Project 2014-1-UK01-KA203-001819

Dates: 2014-2016 

Project Team: Professor Debbie Tolson ¹, Professor Iva Holmerova^2 ,Dr Rhoda Macrae¹, Anna Waugh¹  Dr Simona Hvalič- Touzery³, Professor Wilson de Abreu⁴, Professor Manuel Lillo Crespo⁵ Anne Merta⁶, Professor Elizabeth Hanson⁷

Organisational Affiliations

1. Alzheimer Scotland Centre for Policy and Practice. University of the West of Scotland UK
2. Centre of Expertise in Longevity and long Term Care, Charles University, Prague
3. Angela Boškin Faculty of Health Care, Jesenice, Slovenia
4. Porto School of Nursing, Porto, Portugal
5. University of Alicante, Spain
6. Turku University of Applied Sciences Ltd TUAS, Finland
7. Swedish Family Care Competence Centre, Linnaeus University, Sweden

Synopsis: The Palliare Project was completed between 2014-2017 by a partnership of seven European countries (Czech Republic, Finland, Portugal, Scotland, Slovenia, Spain and Sweden). The aim of the dementia Palliare project was to create an inspirational experiential interprofessional learning solution to equip the European qualified dementia  workforce to lead and champion practice reform. This required new knowledge to generate an experienced based understanding of advanced dementia and best practice for care delivered in partnership with family carers, and to use this knowledge to create state of the art advanced dementia education.   Palliare, means to cloak in support, the term Dementia Palliare was chosen as a new concept to describe dementia specific palliation.   Building the evidence for Dementia Palliare and Palliare education  involved 11 work streams and included the following research activities:-

• Literature Review
• Policy Analysis
• In-depth case studies
• Educational Gap Analysis
• Experiential learning pedagogical review

Publications:

Hanson, E., Hellstrom, A., Sandvide, A., Jackson, GA., Macrae, R., Waugh, A. Abreu, W. & Tolson, D. (2016). The extended palliative phase of dementia – an integrative literature review. Dementia DOI: 10:1177/1471301216659797.

Tolson, D., Fleming, A., Hanson, E., Abreu, W., Lillo Crespo, M., Macrae, R., Jackson, G., Hvalic-Touzery, Routasola, P. & Holmerova, I. (2016) Achieving Prudent Dementia Care (Palliare): An International Policy and Practice Imperative. International Journal of Integrated Care, 16 (4), 18, 1–11, DOI: http://dx.doi.org/10.5334/ijic.2497.

Lilo-Crespo, M., Riquelme Golindo, J., Macrae, R., Abreu, W., Hanson, E., Holmerova, I., Cabaneor, M,J., Ferrer, R., Tolson, D. (2018) Experiences fo advanced dementia care in seven European countries: implications for educating the workforce. Global Health Action 11(1):1478686.

https://10.1080/16549716.2018.1478686

Hvalič-Touzery, S., BrigitaSkela-Savič, B., Macrae, R., Jack-Waugh, A., Tolson, D., Hellström, A.,  de Abreu, W., Pesjak, K. (2018) The provision of accredited higher education on dementia in six European countries: An exploratory study. Nurse Education Today 60, 161-169  https://doi.org/10.1016/j.nedt.2017.10.010 

Tolson D (2020) Transforming advanced dementia: the Palliare Best Practice Statement, an interprofessional learning framework and tool for improvement .Nursing Standard. 35, 10, 56-59. doi: 10.7748/ns.35.10.56.s33.

Project Website: https://www.uws.ac.uk/research/research-areas/health/dementia-palliare/

Title: What helped people living with dementia during the Covid-19 pandemic? A co-produced research study

Research Team: Professor Debbie Tolson (UWS), Dr Anna Jack-Waugh (UWS), Elaine Deehan (NDCAN), Euan Petrie (SDWG), Marion Ritchie (NDCAN), Angela Worthington, Tony Worthington (SDWG), Elaine Symington, Ian Symington (SDWG), Dr Margaret Brown (UWS), Dr Louise Ritchie (UWS), Connor McDonald (UWS), Rachel Allen (UWS), Margaret Northedge, Barry Northedge, Wendy Rankin-Smith (Alzheimer Scotland).

Summary: Working together with members of the Scottish Dementia Working Group (SDWG) and the National Dementia Carers Action Network (NDCAN), this project aimed to understand what helped people to live with dementia during the Covid-19 pandemic in 2020 and 2021.

Using Nominal Group Technique (NGT) methodology, this project was co-produced between Alzheimer Scotland Centre for Policy and Practice (ASCPP) staff and members of SDWG and NDCAN groups at every stage from developing the research question, data collection and analysis to dissemination.

It is hoped that the recommendations from this project can help inform good practice around how to support people with dementia living the best life possible at home. 

Read the summary report here:

Summary report (PDF)

RESEARCHERS: DR LOUISE RITCHIE, DR SUSAN HENDERSON-BONE, ANGELA GREGORY, DR NICK JENKINS

Project title: Understanding dementia education in primary schools from the perspective of the pupils

Project status: Dissemination

Funders: UWS Crucible Fund 2017

Overview: Using the Award-winning Understanding Dementia: Class in a Bag, this project aimed to explore the experiences of learning about dementia in a primary school setting from the perspectives of the pupils. The project used a participatory video approach, asking the pupils to film their own experiences of the dementia education session in order to understand what stood out to them and how interacting with the materials in the bag informed their understanding of dementia.

Publications: in preparation