SPIN-Dementia Network+ Flexible Funding Awardees

Round 1 – Inclusion in Practice

Falls, fragility fractures, osteoporosis, and dementia often occur together in older adults, creating a major healthcare challenge in the UK. Fragility fractures—caused by low-trauma incidents like a fall from standing height—affect around 549,000 older adults each year in the UK. People with dementia are at higher risk of these fractures, which can lead to sudden cognitive decline, reduced independence, and increased strain on caregivers.
Fragility fractures cost the NHS over £5.4 billion annually, yet rehabilitation pathways remain inadequate, particularly for those with dementia. Most rehabilitation programs are based on hip fracture research, with little evidence on recovery from other fractures. Additionally, people with dementia are often excluded from these studies, meaning existing recovery plans may not suit their needs. Dementia symptoms can make rehabilitation difficult, highlighting the need for dementia-friendly approaches.
This project aims to improve rehabilitation for people with dementia after a fragility fracture. We will speak with people with dementia and their caregivers—both those who have experienced a fall and those who haven’t—to learn what works and what better rehabilitation should look like.
We will talk to healthcare professionals across Cornwall, Devon, and the Isles of Scilly to understand local rehabilitation services after a fragility fracture. We’ll also look at what helps or makes it harder for people to be referred to support.
Findings will inform research trials, including FRACTURE FRIENDS and MAINTAIN, designed to create more effective post-falls/fracture rehabilitation, ultimately improving recovery and quality of life for people with dementia and caregivers.

Empowering Decision-Making: Using Storytelling to Support People with Dementia in Future Care Planning.
As cognitive decline of dementia progresses, individuals with dementia often experience reduced insight into their own health and may lack the capacity to make decisions about their care needs, combined with views that people with dementia are no longer seen as capable of making decisions. When people with dementia are admitted into a care home this usually results from carers no longer feeling they are able to cope, or when the person with dementia has been admitted to hospital following a fall and the care professionals think the person would be better supported in a care home. There is no choice for the person with dementia and no say in their care needs and preferences.
This research project will explore how storytelling can help people with dementia in planning their future care and empower individuals with dementia to express their values, preferences, and wishes for future care in a meaningful way before they lack capacity. By sharing personal stories, people can better communicate their needs, and this can enhance person centred care and supported, and care providers can gain deeper insights into individuals’ lives.
This research is using coproduction methods and a conceptual framework designed from a systematic literature review being conducted by Martha as part of her PhD. The research project will involve a diverse membership in an advisory group including people living with dementia, registered care home managers and an expert in future care planning, supporting the development of a storytelling toolkit which empowers decision-making, emotional support, and improving social care planning for people with dementia.

People with language-led dementia or ‘primary progressive aphasia’ (PPA) often find themselves waiting years for a diagnosis and unable to access help and support. As the symptoms progress people rely on other people, their spouses, partners and family, to help them with everything. People with PPA and their families become lonely and isolated. Depression and anxiety are common in people with PPA and family members. Speech and language therapy is the main treatment for PPA but isn’t mostly not available. Our lived-experience contributors have previously been told that there were not enough speech and language therapists locally, or those that were there did not know what to do. Our lived-experience contributors have asked us to try out a national speech and language therapy clinic for people with PPA and their family members, staffed by student speech and language therapists. The students will be supervised by an experienced speech and language therapist. This will improve the students knowledge and confidence in this field for the future. The clinic will be hybrid, so that people can attend via video conferencing or in person. We will need computers and therapy materials to set this clinic up. We will measure the benefits of the clinic for people with PPA and their families using measures of communication and quality of life. We will also ask students about changes in knowledge.

Olfactory dysfunction (loss/decreased sense of smell) is an invisible impairment that may be a modifiable risk factor for cognitive decline and dementia. It affects over half of people aged 65 and above, and four in five aged 80 and over. People with olfactory dysfunction are at greater risk of cognitive decline, social isolation, and lower quality of life. Those affected may experience reduced control over personal hygiene, increased depressive symptoms, and difficulties with daily routines. It also negatively impacts eating behaviours and increases mortality risk, with people with olfactory dysfunction being over three times more likely to die than those with normal olfaction (smell).
However, due to the regenerative capacity of the olfactory pathway, interventions such as olfactory training may help mitigate age-related olfactory decline and support healthy ageing. Although limited, studies suggest that benefits from olfactory training extend beyond improvements in olfactory function, including enhanced cognition, reduced depressive symptoms, and protection from cognitive decline. Yet, olfactory dysfunction in older people is under-researched, largely undiagnosed and untreated.
With the intention to reduce the risk of dementia and promote healthy ageing, this project aims to advance research and innovation by: (1) Establishing an interdisciplinary network with experts in olfaction, ageing and dementia, including people with lived experience (e.g., people with dementia, family carers, people with olfactory dysfunction), communities, healthcare professionals, charities, industries, and scientific community. (2) Identifying and reaching a consensus on uncertainties, gaps and prioritises to drive this field forward. (3) Formulating objectives for future collaborative projects and funding bids.

The project extends the knowledge exchange and collaboration remit of an ongoing ESRC project ‘My Home, My Garden Story’ (MHMGS), exploring the role of domestic gardens in the lives of people living with dementia, across Yorkshire and Greater Manchester, and their support networks, including friends, family, neighbours, and professional carers. This project, in consultation with a dementia support group called ‘York Minds and Voices’ (YMV) (part of the Dementia Engagement and Empowerment Project), aims to develop visual garden stories that engage with a person’s garden practices, through ethnographic and creative methods. These stories will inform practice when supporting people living with dementia to access their gardens. In this additional collaborative work we hope to work directly with dementia support groups representing people from under-represented backgrounds, including LGBTQ+ and minoritised ethnic demographics, in order to create consultation panels in Greater Manchester, to work alongside the existing panel in York. These panels will contribute to the process of analysis, and will inform both academic and non-academic outputs, including prompts for relevant professionals such as architects and care providers. We will also work with members of the Manchester groups as participants and develop their garden stories, supplementing the individual household stories developed in the primary project. Key to this extended work is the opportunity to diversify perspectives of people living with dementia, to ensure a broader range of stories to be included in the final knowledge exchange and impact work, and inform the design of practice based outputs for architects and care professionals.

The impact of dementia on everyday communication is profound, affecting quality of life and relationships. National guidance recommends people get help from speech and language therapists (SLT), for example to support with remembering words. However, people do not routinely get this community support. This is because SLTs need guidance about how to offer evidence-based, timely communication support for people with dementia and their families.
This project aims to support non-dementia specialist community-based SLTs who come across people with dementia as part of their role to make decisions about what types of communication support to offer, to whom, at what time and how. It aims to do this through designing, with people with dementia, family members and healthcare professionals, some clear and practical guidance to support decision-making in this area (a decision-aid). What will we do? Hold a series of four workshops with two different groups of people to design the decision-aid: (1) People with dementia and their family members (2) Dementia healthcare professionals and SLTs working in the community. These workshops will allow the researchers to work in collaboration with people who will use and/or benefit from the newly designed decision-aid to make sure it has the best chance of being useful to them. After the workshops are complete, future research will test the decision-aid in healthcare services.

Round 1 – Proof of Principle

Generative AI for BraIn health (GABI): empowering older adults to adopt healthy lifestyle changes
Sara Di Stefano, University of Stirling

This project aims to use generative AI to support healthy ageing by encouraging older adults to adopt brain-healthy lifestyle changes. Lifestyle factors, such as physical activity, diet, social engagement, and mental stimulation, play a critical role in maintaining cognitive function and reducing dementia risk. However, motivating older adults to make and sustain behaviour changes remains challenging.
The Generative AI for BraIn health (GABI) project will explore how AI-driven digital tools can personalise health messaging and create engaging, culturally relevant content that encourages positive behaviour change. Through co-production with older adults, caregivers, and dementia experts, the project will design and test prototype AI-generated interventions that use storytelling, visual prompts, and adaptive recommendations to promote healthier lifestyles.
The study will involve focus groups and workshops with older adults aged 55 and above, including individuals at risk of dementia. Participants will help shape the tone, content, and usability of AI-generated materials, ensuring accessibility and inclusivity. Ethical implications of using generative AI in health communication—such as privacy, accuracy, and emotional sensitivity—will also be examined.
The goal is to develop a practical, ethical framework for deploying AI technologies in brain health promotion, supporting self-management, empowerment, and early prevention of cognitive decline.

This project will use electronic health records (EHR) to identify patterns of dementia risk factors across different subtypes of the disease. Dementia is not a single condition, but a group of related syndromes with varying causes and trajectories, such as Alzheimer’s disease, vascular dementia, and mixed types. Understanding how modifiable risk factors (e.g. hypertension, diabetes, obesity, smoking) differ between subtypes can help design targeted prevention strategies.
The project will analyse anonymised EHR data from NHS primary and secondary care systems to determine how these risk factors present across different demographic and clinical populations. It will also explore the combined effect of multiple risk factors and their timing relative to diagnosis.
By identifying patterns and clustering of risks, this study will provide new insights into how dementia develops and progresses across subtypes. Findings will help shape tailored interventions, improve risk prediction models, and inform public health initiatives for dementia prevention. The work will also evaluate the feasibility of using EHR data to support large-scale, data-driven dementia research and contribute to national strategies on early detection and prevention.

The cells in the brain communicate through chemical messengers. Medications that affect those messengers can disrupt the brain. Centrally acting anticholinergic medication (CAAM) makes the brain less sensitive to the messenger acetylcholine. CAAMs are harmful for people with dementia and may increase the risk of developing it. Up to one quarter of older adults take CAAMs for depression, pain, or bladder issues, despite safer alternatives being available.
This project aims to reduce unnecessary use of CAAMs by examining prescribing patterns and developing strategies for safer medication use in people with dementia or those at risk. Using electronic health records from Lambeth DataNet and South London and Maudsley, the team will analyse CAAM prescribing trends in people newly diagnosed with dementia and in high-risk groups such as stroke patients.
The project will also establish a stakeholder network of people with lived experience, primary care pharmacists, and clinicians to co-design a future deprescribing intervention. Partnering with SPIN-D will embed safer prescribing within broader dementia prevention strategies, helping delay cognitive decline and improving care quality for older adults.

This project evaluates whether Movement Inspired by Martial Arts (MIMA), a low-impact exercise programme for adults aged 50+, can improve physical, cognitive, and social wellbeing while reducing dementia risk. Staying active and socially engaged supports brain health, but access to inclusive, enjoyable physical activities remains limited.
The project builds on Cardiff’s NIHR-funded Active, Connected and Engaged work, co-producing MIMA sessions with diverse local communities. With SPIN-D support, the study will assess MIMA’s feasibility, benefits, and accessibility, and adapt it for people living with dementia or mobility challenges. It will run across two phases: (1) evaluating MIMA’s practicality and benefits, and (2) co-developing a peer-led model suitable for use in homes and care settings.
A diverse advisory group of experts, carers, and participants will guide the project. By developing a scalable, culturally sensitive, and sustainable model, MIMA aims to promote healthy ageing, enhance community cohesion, and contribute to dementia prevention.

This project explores how people feel about receiving information on their risk of developing dementia when taking part in research studies. The aim is to develop best-practice guidelines for communicating dementia risk in ways that are clear, compassionate, and meaningful.
Participants from studies such as PREDICTOM and the CARE network will be consulted to understand their expectations, emotions, and preferences around risk disclosure. Researchers and clinicians will also be interviewed to gather professional perspectives. Together, they will co-design guidelines covering key elements such as preferred terminology, pre-disclosure information, and post-disclosure support.
The study will produce recommendations to ensure dementia risk information is communicated ethically and effectively, supporting informed decision-making and encouraging early prevention actions. Clear, empathetic communication can reduce anxiety, promote engagement in research, and motivate individuals to adopt healthier lifestyles to lower their risk of dementia.

Round 2 – Proof of Principle

Some women are facing a hidden and poorly understood challenge: the overlap between young-onset dementia and the transition to menopause. Both conditions can cause similar symptoms, such as memory problems and mood changes. Symptoms may be incorrectly attributed to either menopause or dementia, leading to misinterpretation by healthcare professionals and leaving women feeling misunderstood. This can make it more difficult to receive the right diagnosis, care and support. There is little research exploring how these life changes interact. In the UK, 70,000 people are diagnosed with dementia before the age of 65. Our project seeks to understand the experiences of women living with young-onset dementia during the menopause transition, focusing on changes in thinking, memory, emotions and physical health, and how symptoms from both conditions might overlap and affect daily life, work, relationships and self-identity. We will also explore experiences with healthcare and support services, particularly for women from rural and minority ethnic communities who often experience additional barriers to diagnosis and support. We will do this by talking directly to women living with dementia who are going through, or have been through, the menopause. Patient and Public Involvement and Engagement (PPIE) will be embedded throughout the project, with women with lived experience helping to shape the study, including the research questions, recruitment materials, interview approach, interpretation of findings and how the results are shared. This will help ensure that the research remains relevant, accessible and grounded in the priorities and experiences of the women it seeks to represent.

Many people living with dementia will experience behavioural and lifestyle changes months, or often years, before a formal diagnosis is made. These early changes are likely to be first noticed by family members, carers, or support workers in community settings. However, in practice, it is difficult to know whether such changes are part of normal ageing or whether they indicate that someone should be referred to a specialist service. As a result, opportunities for earlier assessment, intervention and support are often missed. This project will explore whether machine learning can help identify people who may be at higher risk of future cognitive decline, using data from existing large observational studies. While existing research has focused on the use of specialist assessments, brain imaging, or data collected during routine GP appointments, this project will focus on information that can be realistically observed in community care settings. This may include changes in mood, sleep, or everyday activities and the approach will be informed by carers and people with lived experience. By analysing patterns of change over time, this project aims to develop a tool that can estimate a person’s risk of future cognitive decline using simple, low-burden observations. This information could help indicate when someone appears stable, may need closer monitoring, or when referral should be considered. In the longer term, this work could contribute to digital tools that support decisions made by carers and community services.

People with long-term mental health problems may be more likely to develop dementia later in life, especially if they have more than one psychiatric condition during midlife. Recent research using UK mental health records suggests this may identify an important group for earlier dementia prevention. However, we still do not know enough about which parts of people’s later care and treatment might be linked to dementia risk, or whether opportunities for prevention are shared fairly across different groups. This project will use existing anonymised mental healthcare records held within the Akrivia Health research platform to study adults who had more than one mental health condition before age 60. We will examine whether differences in treatment, talking therapy, and contact with services are linked to later dementia risk, and whether these patterns differ by deprivation and other key characteristics. We will use artificial intelligence (AI)-enhanced analysis of routine clinical records to capture important information that is often missing from standard coded data alone.

Dementia and memory loss affect more women than men, but we still do not fully understand why. One possible reason is that women experience major life events, such as pregnancy and menopause. These events involve massive changes in hormones which affect the brain. But more research is needed to understand if and how they influence dementia risk. In this project, we will use data from a large UK study called the PROTECT study. This study examines changes in memory and thinking over time. Since 2014, over 20,000 people aged between 40–99 have taken part. Roughly 70% of these are women.

We will use this data to examine women’s health history, including number of children and age at menopause. We will assess whether these factors are linked to changes in thinking and memory over time, and whether some women experience earlier or faster decline than others. We will also look at other known risk factors for dementia, such as depression, high blood pressure, and obesity, and explore how these work together with a woman’s health history to affect memory and thinking over time. Finally, we will test whether including these factors improves our ability to identify women at higher risk of memory problems. This could aid earlier detection and better prevention of dementia. This research will show how health factors, like menopause, fit into how the brain ages. By filling this gap in our knowledge, we can create more personalised ways to check for and prevent dementia in women.

Alzheimer’s disease (AD) affects not only memory and cognition but also significantly impacts overall health and well-being. Individuals living with Alzheimer’s frequently experience poor oral health, including painful gum disease, adding to their discomfort and stress. Recent studies suggest that harmful bacteria in the mouth may influence how rapidly dementia progresses, highlighting the importance of oral health care in dementia management. Our study, designed with co-production from people with lived experiences, will explore whether drinking beetroot juice, naturally rich in nitrate, can help improve oral health in people living with AD. When beetroot juice is consumed, nitrates are converted into nitric oxide (NO), which contributes to the regulation of inflammatory responses in gum tissue, combats harmful oral bacteria, and supports heart and brain health. By potentially enhancing oral health, this simple dietary intervention could alleviate discomfort, improve overall well-being, and possibly slow the progression of AD.

Some groups of people in the UK, especially Black and South Asian ethnic communities, are more likely to have health problems like hypertension, diabetes, dyslipidaemia and obesity. These problems can increase the chances (risk) of getting dementia. Even though we know many ways to reduce the risk of dementia, like staying active, eating well, and staying connected with others, many dementia-prevention programmes do not work as well for these communities. Sometimes people do not trust the services, or the programmes do not feel relevant to their culture or everyday lives. This project wants to understand what helps these communities get involved in activities that can reduce dementia risk. Instead of testing a new programme, we will look at lots of existing studies and community projects to find out:

• What helps people feel comfortable and included?
• What builds trust?
• What makes a programme feel culturally welcoming?
• Why do some community projects work well and others do not?

We will use a method called a realist review, which tries to explain how and why things work, not just whether they work. We will also work with community members and professionals to check our ideas and ensure they make sense in real life.

Sometimes, people get an illness called dementia, which can make it harder to use language. This means they might find speaking, understanding, reading, or writing difficult. When these language problems slowly get worse over time, it’s called progressive aphasia. There isn’t much easy-to-understand information about progressive aphasia, and many people say this is one of the most frustrating parts of their illness. People living with this condition have asked for clear, helpful guides to support them and their families.

We want to make a guide about progressive aphasia that works for people in all parts of the UK. We will start with a guide made in Australia and adapt it for the UK. To do this, we will talk to people who have progressive aphasia and their families. We will hold group meetings in each UK nation (England, Scotland, Wales, and Northern Ireland). In these meetings, people will share ideas about what should go in the guide. We will use a method called “World Café,” which means people can share ideas in different ways, by talking, writing, or using gestures. After collecting ideas, a steering group (made up of people with aphasia, family members, and researchers) will help us put the guide together. When it’s ready, the guide will be available online and in print. We will print 5,000 copies and share them with people and health professionals (speech therapists and doctors). We will ask for feedback to make sure the guide is helpful.

It is important to know whether a person is at high risk of developing dementia in several years’ time. Knowing this in advance, and as early as possible, using cognitive tests and lifestyle-related questionnaires can help people manage and reduce their risk. These tests and questionnaires are safe, easy to use and form the core of the successful community-based PROTECT study (https://www.protectstudy.org.uk/). The PROTECT study has over 30,000 participants in the UK who take part in annual assessments of their memory and dementia risk factors to support healthy ageing. This project aims to build an accountable AI tool that can help predict cognitive impairment as early as possible. The tool aims to learn from scientific publications on dementia modifiable risk factors by building a knowledge base from the publications and associating them with the collected cognitive test and lifestyle questionnaire data. The tool will process questionnaires using recent, open Large Language Models with the scientific knowledge base and integrate them all together into a machine learning model. The predictions and reasons for identifying early cognitive impairment from the model will be evaluated by medical experts in the team. The outcome of the project will be assessed with the PROTECT team and representative participants through a range of PPIE activities. The tool will enhance our understanding of personalised, longitudinal dementia modifiable risk factors from our community-based data.