Leeds Beckett University - City Campus,
Woodhouse Lane,
LS1 3HE
Enhancing brain health, dementia assessment and post-diagnostic support
Our research is concerned with how services related to the diagnosis and post-diagnostic support for dementia are responsive to the needs of people and their families.
This work includes how services support the needs of people experiencing cognitive changes that do not meet the threshold of a diagnosis of dementia, and dementia prevention to enhance brain health. We work collaboratively with brain health researchers, academics, advocates and policy makers in the UK and internationally on projects related to brain health.
We are particularly interested in understanding how services can be holistic and inclusive - and identifying innovative practice that supports timely and personalised diagnosis and care.
Our research in this field covers a range of topics and approaches, from understanding differential diagnosis of dementia and examining the signs and symptoms of dementia and how people experience these, to supporting people who have just received a diagnosis of dementia in the community.
Current and recent funded research and evaluation
Black people of Caribbean origin are at higher risk of dementia than White British peers and are more likely to be diagnosed at an earlier age . They tend to access specialist services later in the illness, often in crisis. This is partly due to lack of dementia awareness and high levels of stigma. Caribbeans often turn to community organisations, such as Black Majority Churches, for help and support in times of need. These churches have strong traditions of activism where faith, health, and community service are inseparable concern. However, faith leaders report lacking knowledge, understanding and skills to support their congregants and members of the wider community with dementia and other mental health challenges. Harnessing the currently untapped potential of Black Majority Churches as community mental health assets could help increase dementia awareness, reduce stigma, improve wellbeing of people with dementia and their carers, and facilitate engagement with mainstream services. This study will work with key stakeholders to develop an intervention to establish Black Majority churches as ‘dementia-friendly’ community hubs for delivering culturally-appropriate dementia awareness, training, information and support.
Chief Investigator: Prof Dawn Edge, The University of Manchester
Leeds Beckett Investigators: Prof Claire Surr
Funder: MRC PHNID
Funding amount: £149,996
This research focuses on how football organisations can help people living with dementia and their families to get support which fits in with their cultural needs (is part of their lifestyle, interests, community, and heritage). Dementia FC will find out what dementia support is currently offered by football clubs/organisations across England, and work with people living with dementia, family carers/friends, service providers and others to co-develop recommendations/resources to support high-quality dementia care through football organisations.
Chief Investigator: Dr Marie Poole (Newcastle University)
LBU Investigator: Dr Nicky Taylor
Funder: NIHR Three Schools Dementia Research Programme
Funding amount: £429,782
This evaluation has been conducted to provide an impartial and independent perspective on the effectiveness and impact of PDS (including on those living with dementia and their care partners/unpaid carers) to help inform future developments. This was an integrated process and theory-based outcomes evaluation, including six qualitative case studies with delivery staff, as well as those living with dementia and their carers.
Chief Investigator: Sophie Elliot IFF Research
LBU Investigator: Professor Sarah Jane Smith
Funder: Scottish Government
Funding amount: Undisclosed
Mild cognitive impairment (MCI) affects memory and thinking more than would be expected for a person’s age. However, it does not as significant an impact on daily life as dementia. Around two in ten people aged 65 and over in the UK are estimated to live with MCI, although this number could be higher as there are currently no formal NICE guidelines for diagnosis and treatment.
Some people with MCI will go on to develop dementia – about one in seven each year, and half within five years. Research also shows that some marginalised communities are more likely to develop MCI (with some groups being more at risk than others) but are less likely to receive a timely cognitive assessment or culturally appropriate care.
This doctoral research aims to explore these inequalities. It will investigate the experiences of these communities accessing Memory Assessment Services (MAS), looking at:
- What kinds of memory concerns people bring to these services
- Their experiences of accessing care and receiving an MCI diagnosis
- Whether they are receiving appropriate follow-up support
- Who is best placed to provide ongoing care when support is lacking
Chief investigator: Isabelle Gooday
Supervisors: Sarah Smith and Professor Louise Warwick-Booth
Funded by: the Alzheimer’s Society iCare Doctoral training centre
This doctoral qualitative study explored experiences of early post-diagnostic support following a diagnosis of dementia and how well current support meets peoples’ needs. The study used repeated, longitudinal interviews over a six-month period, alongside self-taken photographs of day-to-day life, with people diagnosed with dementia and their relatives. Participants were purposefully selected to include those often underrepresented in research, such as people with rarer dementias, people living alone or in rural areas, and people from minoritised ethnic groups. The findings identified substantial impacts and uncertainties following a diagnosis of dementia, particularly for those from under-represented groups, including uncertainties around what support was available and whether this would meet the persons’ needs, resulting in high levels of self-management and reliance on informal carers. The study makes suggestions for improving post-diagnostic support to better meet the diversity of needs and uncertainties experienced following a diagnosis of dementia.
PhD Student: Julie Philps
Leeds Beckett University Supervisors: Professor Sarah Smith and Dr Laura Booi
Interventions to support timely help seeking for dementia have been designed for BAME communities and implemented through diverse healthcare facilities but the challenge of late dementia help seeking persists among the Black African and Caribbean population specifically. Community pharmacies are healthcare facilities conveniently located within the community, thus the potential for timely dementia help seeking support to be provided to the Black African and Caribbean population through this health facility was explored in this doctoral research study.
While personal and systemic difficulties experienced on the help seeking journey of the Black African and Caribbean people contributed to their delayed help seeking for dementia, the community pharmacists were willing and believed they were suitably positioned to provide initial as well as ongoing dementia help seeking support to this population. Possible interventions were grouped into community pharmacy-based individual public health engagements, media engagement and wider community engagement, although the community pharmacists envisaged among other factors, a lack of adequate funding as a probable barrier to the implementation of these interventions.
Chief Investigator: Dr Oma Iyoko
Supervisors: Sarah Smith and Professor Claire Surr
One of the main reasons people seek a diagnosis is to have access to treatments, such as medications, which are offered to around 70% of people diagnosed. Discussing treatments can be stressful and complicated because medicines do not cure dementia, they only target symptoms and do not work in the same way for everyone.
This study aimed to understand how medications are described to people with dementia in memory assessment services, and see how that affects peoples understanding of the treatment and decision making. This was done through three workstreams (WSs):
- WS1 examined how medications are talked about appointments
- WS2 used a large survey of older people to understand how presenting information about medications in different ways influences the decisions people make
- WS3 brought together the findings of WS1 and WS2 in a workshop of people living with dementia and their family members to reach agreement on communication methods that have the best outcomes for people with dementia
Study outputs: Kelley, R., Surr, C., Russell, G., Crowther, G., Dickinson, R., Dooley, J., Griffiths, A., Knapp, P., and Smith S. (2025) Influential factors when making decisions about dementia medications in memory assessment services; a focused ethnography and interview study Journal of Geriatric Psychiatry and Neurology. DOI: 10.1177/08919887251362465
Chief Investigator: Dr Sarah Jane Smith
Leeds Beckett Investigators: Dr Rachael Kelley, Professor Claire Surr
Funder: National Institute for Health and Care Research, Research for Social Care (NIHR RfPB)
Funding amount: £149,945.00
This project aimed to outline different models of MAS delivery across England and Wales, to identify and share good and innovative practice and to promote and support ongoing service development. The project had three phases:
- Phase 1: This phase aimed to describe what good or innovative practice in MAS might look like. We have produced a guide to supporting continued development, improvement and innovation in MAS
- Phase 2: Through a survey we sought to understand how MAS in England and Wales are designed and features of good or innovative practice
- Phase 3: This phase aimed to look in more detail at specific examples of good/innovative practice we are told about in the survey through a case study approach. We have produced a report sharing the case study examples and survey findings
Study outputs: Smith, S.J. and Surr, C. (2024) Exploring challenges and innovation in memory assessment services in England and Wales – a national survey and case study approach. BMC Health Services Research. 24. 1143.
Chief Investigator: Professor Claire Surr and Professor Sarah Smith
Leeds Beckett Investigators: Dr Laura Booi, Dr Leanne Greene, Rebecca Platt, Sally Brown and Dr Amber Rithalia
Funder: NHS England and NHS Improvement, conducted in collaboration with Improvement Cymru
Funding amount: £72,866
The Next Generation (NextGen) Brain Health research program is an international research project exploring brain health knowledge and risk factor exposure in young adults aged 18-39 years. Young adults are a neglected group in brain health research even though exposure to many lifestyle-related risk factors for dementia (e.g., depression and alcohol use) begins during this life stage. The goal of NextGen is to identify risk and resilience factors for brain health that are most important in young adulthood, so that we can intervene and prevent future dementia.
NextGen is a multi-stage, mixed-methods project. In 2022, we conducted in-depth focus groups with diverse populations of young adults in Europe and North America (n = 40, >85% non-White) to understand their conceptualization of brain health. We are currently conducting focus groups young adults who have experience playing contact sports, and young adults who are living in bigger bodies.
Building on this work, we launched a global, online brain health survey for young adults in autumn 2023. The survey is currently available in 8 languages (English, Spanish, Hindi, Mandarin, French, Korean, Amharic and Twi). Over 2,000 responses have been collected to date across five continents. In addition, the survey has been adapted for pen and paper delivery to Indigenous communities in Peru (n = 150 so far) and is now being adapted for remote communities in Ghana.
To read more about the NextGen study, please visit the project page.
Chief Investigator: Dr Laura Booi
Funder: School of Health, Small Grant
Funding amount: £7,858
INEPT was a short, satirical performance showing some of the great, and not-so-great ways humans can support their own brain health. Delivered by award-winning director and comedian Kit Green and the INEPT Team. Central to the immersive and participatory experience is a dialogue about brain health and dementia risk reduction.
INEPT showcased nine performances across the UK in November 2023: Birmingham, Surrey, Nottingham, Leeds, Newcastle, with a total of 118
attendees. The findings from INEPT are currently being analysed.
Chief Investigator: Dr Laura Booi
Funder: Alzheimer’s Research UK, Inspire Award
Funding amount: £24,945
Funded by a Global Brain Health Leader Award from the Alzheimer's Society, Alzheimer's Association and the Global Brain Health Institute. This project is working in conjunction with a large-scale, multi-centre study, the PREVENT Study, which aims to establish novel and clinically applicable early biomarkers of Alzheimer's disease, this project will identify the motives, facilitators, and barriers to participation in dementia prevention/risk-reduction research in healthy middle-aged adults who are under-represented in research.
Chief Investigator: Dr Laura Booi
Leeds Beckett Investigators: Professor Claire Surr and Dr Leanne Greene
Funder: Global Brain Health Institute, Alzheimer’s Association, Alzheimer's Society
Funding amount: $25,000 (USD)
Funded by the Yorkshire and Humber Clinical Research Network, the aim of this project is to develop the Yorkshire and Humber Brain Health Research Network (YH-BHRN) and establish a set of inclusive guidelines for brain health researchers working with Third Sector organizations that support seldom-heard from voices in the Yorkshire and Humber region.
Chief Investigator: Dr Laura Booi
Leeds Beckett Investigators: Dr Sarah Smith and Dr Nicky Taylor
Funder: Yorkshire and Humber Clinical Research Network
Funding amount: £19,915.71
This international project aims to create a central hub for emerging professionals in the diplomacy space to learn about Brain Health Diplomacy focused ventures. Building on the recent model for Brain Health Diplomacy, this innovative approach, which seeks to directly connect brain health science with the concept of diplomacy, is essential to advance greater equity in brain health outcomes for an aging population. This is particularly imperative for marginalized and seldom heard communities worldwide, where traditional policy paradigms, programs, and approaches to research need this support most.
Chief Investigator: Dr Laura Booi
Funder: Global Brain Health Institute
Funding amount: €5,000
Funded by a Seed Grant from BrainLat, the aim of this project is to develop regional capacity in Latin America, for brain health diplomacy. Working in partnership with BrainLat, ReDLat, and the Global Brain Health Institute, our team will refine, test the feasibility, and disseminate a Brain Health Diplomats’ Toolkit to advance brain health diplomacy. The need to apply this framework is salient and increasing in Latin America as the cumulative burdens of brain health disorders in Latin America are the highest in the world.
Chief Investigator: Dr Walter Dawson, Oregon Health and Science University
Leeds Beckett Investigators: Dr Laura Booi
Funder: BrainLat Institute
Funding amount: £19,915.71
Lewy Body Disease is the second most common form of neurodegenerative dementia. Upwards of 15% of people with dementia are living with have dementia with Lewy Bodies.
Funded by a UKRI Catalyst Award, and in collaboration with international Lewy Body Disease patient advocacy groups, and Lewy Body Society, this project co-developed 6 videos to promote the experience of living with Lewy Body. These videos are as follows:
- Living with Lewy Body Dementia: Diagnoses and Living Well [3-minute video] - with international Lewy Body advocate Chris Maddocks
- Lewy Body Dementia and Long-term care [3-minute video] - with author and consultant, Danuta Lipinska
- The Importance of Diagnoses and Lewy Body Dementia [3-minute video] - with Dr Joe Kane, Psychiatrist
- Lewy Body Dementia: Peer Support and Living with Lewy Body Dementia [3-minute video] - with Kevin Quaid, Author and international Lewy Body advocate
- Living with Lewy Body Dementia: Fitness, Health and Wellbeing [3-minute video] - with Naomi Gleeson
- Key symptoms of Lewy Body Dementia [3-minute video] - with Rachel Thompson, Admiral Nurse
For further information on Lewy Body disease, please visit Lewy Body International’s website.
Research lead: Dr Laura Booi
Funder: UK Research and Innovation Catalyst Award
Amount: £62,500
The Sporting Memories Network provides free to access sporting reminiscence groups across England. This study was designed to evaluate whether introducing physical activity sessions within existing and newly established groups led to any positive benefits for group members’ physical and mental health and well-being.
Chief Investigator: Professor Claire Surr
Funder: Sport England
Funding amount: £23,500
We assessed the impact of COVID on MAS at a regional level comparing and contrasting the approaches, the impact on service uptake and satisfaction with services. This included services in Leeds, Hull, Bradford, Sheffield, Rotherham. We worked with the Strategic Clinical Network (Dementia and Older People’s Mental Health) to co-ordinate this work.
Leeds Beckett Investigators: Dr Sarah Jane Smith
Funder: Internally funded
