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Brighton & Sussex Medical School

Our Current studies

Our current studies

Read more about some of our current studies at the CDS below.

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NoDem

NoDem Study: Practices, attitudes and outcomes of patients with memory problems but with no dementia diagnosis following memory clinic assessment.

NoDem is a longitudinal mixed methods study with nine sites across the UK, funded by the NIHR ARC KSS. It is sponsored by the University of Sussex, and led by Professor Naji Tabet, Chief Investigator and Director of the Centre of Dementia Studies, co-investigators Dr Elizabeth Ford and Dr Rebecca Atkinson, and Daniella Thorn.  

Approximately one third of patients referred for memory assessment may be discharged from memory clinics without a diagnosis of dementia, yet the experiences and outcomes of this population is unexplored. The NoDem study is designed to understand this populations’ beliefs, fears and hopes regarding assessment outcome, patients’ intentions for the future, as well as the emotional, behavioural and health impact post-diagnosis as well as one year later. NoDem participants take part in a questionnaire at baseline and then again at one-year follow up. Additionally, a sub-group of participants at Sussex Partnership Foundation Trust have been invited to take part in a one-to-one interview, at baseline and follow up, to gain an in-depth understanding of the subjective experiences of this cohort. Increasing our understanding of the benefits and harms associated with going through the memory assessment process when no diagnosis is given could inform health policy strategy, helping all patients with memory concerns, to live well.

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CO-COG

CO-COG Study: Co-designed digital tool for people diagnosed with mild-to-moderate cognitive impairment.

The CO-COG Study is a feasibility study for a new smartphone app, created for people diagnosed with cognitive impairment or their care giver to self-report health and wellbeing indicators.

Researchers at the University of Surrey have co-designed and co-produced this app together with people with lived experience of dementia or mild cognitive impairment. The aim of the tool is to identify important changes to health and wellbeing so that patients can receive appropriate advice and support. Reporting this data regularly and remotely should be valuable to patients, care givers, and workforce to identify potential problems at an early stage. In the CO-COG study, we will recruit a group of people with a diagnosis of mild cognitive impairment or dementia to use the app at home. Once participants have used the app for a while, they will provide feedback on the usability, accessibility and usefulness of the app in an interview. We will also present the data provided by the app to a group of health and care workers and ask them to evaluate the clinical utility of the tool in an interview.

The information gathered from this study will inform the design of a larger study to confirm the usefulness of the digital tool.

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DETERMIND

DETERMIND: Exploring the experiences and impact of Covid-19 for the people with dementia and their family carers.

This is a UKRI funded mixed method study examining the experiences and impact of Covid-19 for newly diagnosed people with dementia and their family carers who are participating in the ESRC/NIHR funded DETERMIND programme of research. The study explores the impact of the pandemic and the public health restrictions on the DETERMIND cohort using a range of measures including Quality of Life, psychological wellbeing, physical, mental and social health, and service use. This is supplemented with 50 in-depth telephone interviews with participants to elicit greater insights into their experiences during these unprecedented times.

The project is led by Professor Sube Banerjee from University of Plymouth alongside other universities including the Brighton and Sussex Medical School, University of Sussex, University of York, University of Cambridge, London School of Economics, Kings College London, Newcastle University. Other partners include the Alzheimer's Society, Sussex Partnership Foundation Trust, South London and Maudsley and Gateshead Health NHS Foundation Trust.

The funding application that was submitted outlining the whole study is avaiable to read below.

DOWNLOAD THE FUNDING APPLICATION PDF >

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Memory and the Menopause

Memory and the menopause: Do mid-life changes in estrogen differentially affect cognition in carriers of an APOE e4 genetic risk variant for Alzheimer's Disease?

Women make up two-thirds of those living with a diagnosis of Alzheimer’s Disease. There is evidence that menopause, a biological stage characterised by a drop in the hormone estrogen, contributes to this difference in prevalence.   Many women report changes in their thinking during menopause, including short-term memory loss.  However, the relevance of these changes for a woman’s risk of developing dementia in the future is poorly understood.  To improve menopause symptoms (e.g., hot flushes), women are often prescribed hormone (estrogen) replacement therapy (HRT). HRT may reduce the risk of future Alzheimer’s Disease; however, reported benefits are inconsistent. Our genes may play a role in both whether menopause has longer-term, disadvantageous effects on brain health, and whether HRT can reduce a woman’s future dementia risk.  

We are completing research to test if female carriers of an APOE e4 gene – a strong and prevalent risk factor for Alzheimer’s -, show greater memory change during and after menopause than women who don’t carry this gene. In addition, this project seeks to establish if HRT differentially benefits cognition in this at-risk group.

This project adopts a mixed-methods (qualitative interviews, cognitive assessment, genetics) approach to address these aims, including:

1) focus-groups with women affected by menopause and medical specialists to understand what we need to consider when assessing menopause-related cognitive change.

2) Utilisation of online, digital cognitive assessment (including spatial navigation, raw-speech markers, and tests of attentional control) to understand how menopause impacts brain health in a large sample of individuals with known APOE genotype.

3) Research in NHS primary care and specialist menopause clinics to understand if there is a long-term effect of HRT on cognition and whether predicted beneficial effects are greater in those carrying a genetic predisposition for Alzheimer’s Disease. 

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Flower, Flora, Fauna

Flower, flora, fauna: Can novel metrics of verbal fluency performance help detect individuals at risk of future cognitive decline?

Over 850,000 people are living with a dementia diagnosis in the UK. Whilst treatments to halt or reverse dementia-causing neurodegenerative disease are limited, the ability to detect individuals at risk of future cognitive impairment will help advance preventative strategies.

This project asks if the patterns of words produced on a simple verbal fluency task (i.e., name as many animals as you can in 60-seconds…) can identify individuals vulnerable to future cognitive decline. Specifically, we use natural language processing techniques to characterise subtle differences in the semantic, language and executive strategies used to produce words. The research is testing whether speech and language-based markers can differentiate individuals who carry a genetic risk for Alzheimer’s Disease - the ApoE e4 gene variant - across the lifespan. In addition, we are recruiting individuals at the point of first referral to NHS memory assessment services to see if speech-based markers can help aid diagnosis and 1-year prognosis in a real-world healthcare setting. The eventual aim is to develop an automated, digital toolbox to process and analyse speech, particularly in the context of easy to carry out neuropsychological assessments. 

People with dementia who live on their own can face particular challenges accessing the support they need. Despite estimates, in the UK, that a third of people with dementia live alone, dementia services and research are often tailored around the person with dementia and carer dyad.  This study aims to explore the lived experiences and access to post-diagnostic support for people with dementia who live alone in Kent, Surrey and Sussex, with a focus on underserved coastal communities. Qualitative interviews with people with dementia who live alone, and relatives/friends who live elsewhere, will explore experiences, and needs in relation to support and social interaction. Service providers in the region will be interviewed to understand how the needs of people living alone are being considered, key challenges and what works well. A systematic review on interventions for people with dementia who live alone will be completed. Workshops will be held, including people with lived experience and key stakeholders, to discuss findings and co-develop recommendations for policy, practise and research.

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Cognitive Epidemiology, Dementia, and Ageing Research (CEDAR) Lab

CEDAR lab focuses on the role of biopsychosocial factors on cognitive ageing, cerebrovascular and dementia risk, ensuring a multidisciplinary approach across neuroscience, psychology, epidemiology, and public health perspectives. We aim to investigate modifiable risk factors, biological mechanisms, disease progression and the impact of disease on the individual’s quality of life. From the range of modifiable risk factors, we examine the cognitive and psychosocial assets (e.g., cognitive reserve, social connections, cultural and community engagement), psychological and socioeconomic stressors, as well as social deficits (e.g., loneliness, isolation and social restrictions).

Read more about CEDAR Lab > 

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VIVALDI ASCOT & Ethnography Study

VIVALDI ASCOT & Ethnography Study aims to understand how outbreaks of COVID-19 or any other outbreaks impact the experience and quality of life of people with dementia living in care homes. The study is run by a team of multidisciplinary researchers at Brighton and Sussex Medical School and University College London.

The VIVALDI ASCOT & Ethnography Study is supported by National Institute for Health and Care Research (NIHR) NIHR Health and Social Care Delivery Research (HSDR) Programme number & UK Health Security Agency (UKHSA).

READ MORE ABOUT THE STUDY >

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Cognitive Frailty Study

The aim of this study is to gain a better understanding of the concept of cognitive frailty and its risk factors associated as perceived by the general public and healthcare professionals in the UK. The study is funded by UKRI under the Cognitive Frailty Network and hosted by BSMS in collaboration with investigators from Lancaster University and Heriot-Watt University.

With this study we wish to gain a better understanding of how cognitive frailty is perceived as a concept by the general public as well as healthcare professionals and what constitutes risk factors for cognitive frailty.

READ MORE ABOUT THE STUDY >

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COVID-19 and Dementia (COV-DEM) Study

The aim of the Covid-19 and Dementia study is to gain a better understanding of the impact of outbreaks and infection control preventative measures on individuals with dementia, learning disabilities or  hearing impairments as they can struggle with complex information. In particular, the study aims to investigate the impact of feeling isolated as a result of preventative measures for those living with dementia or cognitive impairment and how to communicate the Covid restrictions and governmental guidelines to those living with dementia and their families and carers, or those with learning disabilities and hearing impairment.

The project is funded by the UK Health Security Agency (UKHSA) and hosted by BSMS in collaboration with University College London, London School of Economics, Birkbeck College, Strathclyde University and Alzheimer's Society.

READ MORE ABOUT THE STUDY >

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Phd studies

Dementia, diabetes and mental health (Dr Ain Nizam)

Dr Ain Nizam is currently undertaking a part-time PhD in dementia, diabetes, and mental health under the supervision of Prof Naji Tabet, Dr Dorina Cadar and Prof Jorg Huber. Her research aims to investigate the effects of pre-existing type 2 diabetes and dementia on the way people present to the memory clinic, their diagnosis, outlook, mental health, and carer support. Her project involves a feasibility observational study of people with dementia and diabetes based at the Dementia Research Unit at Sussex Partnership NHS Foundation Trust (SPFT), as well as the use of the Clinical Records Interactive Search System (CRIS). CRIS is managed by Akrivia Health, which securely holds pseudo-anonymised data on Carenotes, the electronic patient health record system used by SPFT, for research purposes. In addition, she is a part-time General and Old Age Psychiatry higher specialist trainee working in the NHS.

Determinants of dementia attitudes in young people (Esra Hassan)

The project is looking at what socio-demographic factors such as sex, age and ethnicity as well as other factors relating to dementia attitudes such as level of contact with dementia, level of knowledge of dementia and empathy are related to positive or negative dementia attitudes in adolescents (aged 11-18 years old). The project has recruited over 1600 adolescents across six regions of England. There is a growing number of young people who have come across someone living with dementia and are future healthcare professionals and carers for dementia. It is therefore important to capture young people's experiences of dementia. The project aims to understand the relationships between the factors associated with dementia attitudes and how attitudes may form in the first place to provide an evidence base for future anti-stigma and dementia awareness initiatives so that they are maximally effective in this age group. 

Show and tell: Using Photovoice to explore the experiences of LGBTQ+ people living with dementia’ (John Hammond)

This PhD research will use the Photovoice research method as a creative approach to increase our understanding of the complexities of LGBTQ+ identity and how this is lived and experienced over time alongside living with dementia. 

PhotoVoice draws on participatory action research methodologies.  It is the most commonly used participatory technique to understand the experiences of people living with dementia and has also been used with marginalised and vulnerable groups.  However, it has never been used with LGBTQ+ people living with dementia.  Using PhotoVoice, participants take photographs of things that are important to them to illustrate their personal situations.  Their images are supported by their explanatory narratives and form a visual record that can be used to engage people in critical thought and discussion about their communities. 

The findings will build on the scarcity of research that has explored the experiences of LGBTQ+ people living with dementia and have the potential to inform both policies within the dementia agenda and practices within health and social care provision.

OASIS (optimising an intervention for sensory hallucinations): A novel adaptation of the Coping Strategy Enhancement intervention, for hallucinatory experiences in the context of dementia (Amaani Al-Azzawi)

Hallucinatory Experiences (HEs) in Dementia present as a relatively prevalent issue and they can cause distress to both the person living with dementia (PLWD) and their carers. HEs historically have been treated with anti-psychotic medication, which have shown to have negative physical health side effects such as stroke. There are currently no non-pharamcological interventions that support HEs in PLWD. This PhD project will consist of two studies. OASIS seeks to adapt an intervention, that is currently utilised in NHS settings for voice hearing, to the context of dementia. This intervention is called the Coping Strategy Enhancement (CSE), which has foundations in cognitive behavioural therapy (CBT), which aims to reduce the associated distress that can come with hallucinations. This will be adapted thorough a co-adaptation with people of lived experience, then tested in an uncontrolled feasibility trial with PLWD and their carers. A second study will employ a large scale survey that will explore clinicians’ experiences of working with PLWD. 

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The remote memory assessment toolkit

The Remote Memory Assessment Toolkit (RMAS) is intended to support best practice in delivering remote services for patients with dementia.

The toolkit is aimed at clinicians who assess and diagnose dementia. It has been developed by researchers at Sussex Partnership NHS Foundation Trust and Brighton and Sussex Medical School.

READ MORE AND VIEW THE TOOLKIT HERE >