| Key messages | |
| • | Through interactive workshops, co-produced culturally tailored resources, and non-traditional engagement methods, the project is an example of best practice for creating shared learning to underpin interventions for dementia prevention within communities. |
| • | Key elements of success are co-creation with those with lived and professional experience, including researchers from the same ethnic community, recruitment through trusted community influencers, and valuing participants’ time and lived experience through the provision of incentives. |
| • | Co-creation of resources that remain publicly available at the end of public involvement in research projects is one way to ensure the longer-term sustainability of initiatives. |
Introduction
In 2013, an estimated 25,000 people from a minority ethnic background lived with dementia in the UK (All-Party Parliamentary Group on Dementia, 2013; Moriarty et al., 2011). This is expected to double to 50,000 by 2026, and rise to over 172,000 by 2051, nearly a 600% increase in just 40 years (Alzheimer’s Society, 2019; Parveen et al., 2017). Early onset dementia is very common in individuals from minority ethnic communities, who are also at greater risk of developing vascular dementia (Adelman et al., 2011). A recent study reporting on a large dataset from over 662,882 people aged over 65 showed that after controlling for factors such as age, sex and socioeconomic status, Black people had a 22% higher incidence of dementia in comparison to White people. Furthermore, Black and South Asian dementia patients died younger and sooner after diagnosis (Mukadam et al., 2023). Despite this strong evidence, people from minority ethnic communities are underrepresented in dementia research and services, and they are less likely to receive medical support including a cognitive assessment while also scoring lower on dementia diagnostic tests (Alzheimer’s Society, 2019; Parveen et al., 2017). This is driven by the lack of culturally sensitive and appropriate dementia diagnostic and support services, which do not appear to consider the cultural norms and differences of minority ethnic communities.
While a clear need for culturally appropriate interventions that create awareness, target prevention, promote understanding and create dialogue around brain health and dementia has been recognised by researchers, policymakers and dementia support services, very few interventions have been successful in engaging minority ethnic communities or have led to policy changes (Brijnath et al., 2023; Krishnan et al., 2024; Parveen et al., 2017). Additionally, the majority of research and public engagement have been focused on individuals living with dementia and their carers without a community-centred approach (Aranda et al., 2021; Assfaw et al., 2024; Brar et al., 2024; Dang et al., 2023). In response to the lack of co-production and engagement with the wider minority ethnic community and the need to ensure their perspectives are embedded within such initiatives, a number of emerging studies have now highlighted the value of co-design in the cultural adaptation of evidence on dementia prevention (Brijnath et al., 2023). Stigmatisation within minority ethnic communities and often resulting from a lack of understanding about the condition, has been highlighted as a key factor influencing dementia prevention, early diagnosis and treatment in these communities (Ahmed et al., 2014; Sim et al., 2024). Involving individuals across the community in a meaningful way through co-produced and interactive approaches will therefore guarantee the development of sustainable culturally tailored interventions that empower minority ethnic communities in dementia prevention, leading to impact on both policy and practice.
Healthy Brain Healthy Life project
The Healthy Brain Healthy Life (HBHL) project was a targeted culturally tailored dementia-prevention public engagement project co-designed to create dialogue and engage with minority ethnic communities around brain health and dementia. The primary aim of the HBHL project was to raise awareness and improve understanding of dementia among underrepresented communities, with the longer-term goal of informing culturally sensitive public health engagement strategies. The project focused on members of the community, rather than on individuals living with dementia or their carers, in order to support prevention, raise awareness at an earlier stage, and help reduce stigmatisation by engaging the wider community. Additionally, the project sought to use interactive and creative approaches such as workshops to engage and co-create culturally tailored resources including recipe books, digital stories and key information cards to reach wider minority ethnic audiences. This article presents a practice case study of the project and an evaluation to capture the practice learning.
Our approach
Working in collaboration with Alzheimer’s Research UK, Healthwatch Dorset, local community partners including the Bournemouth Poole Christchurch (BPC) Indian community, and Ghanaians in South England, the project co-produced a series of interactive and culturally tailored workshops and resources to create dialogue around brain health and dementia prevention (Figure 1).
Flow diagram illustrating the co-production process of the HBHL project
Planning the project using a co-production approach
In order to ensure strong engagement from minority ethnic communities, and to develop inclusive activities that resonate with the cultural values of the community, a co-production planning session was conducted to inform key elements of the project. This involved discussions with community members (one male, four females) from the BCP Indian community and Ghanaians in South England, UK. Table 1 outlines the discussion questions for the co-production workshops. Discussions centred on the need for such initiatives within the community, suggestions for workshop activities and effective approaches to recruitment as well as the practical aspects of delivering the workshops (for example, venue, time for workshops, content and frequency of workshops, advertisement, incentives etc.). The discussions indicated value for this project and highlighted that, unlike health conditions which manifest physically, conditions related to brain health and dementia are difficult to communicate and people may attribute their causes to spiritual factors, old age, mental illness etc. The findings from this co-production workshop informed the funding application and the methods of implementation and engagement to ensure successful project outcomes.
Discussion questions for pre-workshop co-production sessions
|
Interactive and culturally tailored workshops
The HBHL project delivered a series of monthly co-produced interactive workshops focused on five themes (cooking, music, dance, poetry, arts and craft) to discuss brain health and dementia prevention. The workshops were delivered face-to-face at Bournemouth University campuses and involved 10–15 participants per session. The workshops incorporated knowledge sharing around dementia risk factors, key prevention messages and progress on brain health and dementia research, and highlighted practical and culturally tailored approaches to reduce dementia risk. Table 2 below illustrates the themes and content of the workshops and how these link to brain health and dementia prevention, and Figures 2–8 showcase photos from the workshops.
A description of interactive and culturally tailored workshops implemented in the HBHL project
| Workshop title | Description | Link to digital story | |
|---|---|---|---|
| Workshop 1 | Our traditional food and our community – healthy eating for brain health | This was an interactive cook-along session with a chef from a local cookery school (Figure 2). Participants made traditional dishes from different cuisines around the world from the co-produced recipe book which highlighted ingredients that are important for brain health (Figure 3). The recipe book featured the African & Caribbean Eatwell Guide and the South Asian Eatwell Guide with links to culturally tailored recipes which provided relatable and practical support to enable participants to eat healthier in order to reduce their risk of dementia (https://www.bournemouth.ac.uk/research/projects/healthy-brain-healthy-life). | https://youtu.be/QZSCsWLAcNA |
| Workshop 2 | Creating with our hands – expression through art | Co-produced and delivered with a local textile and creative artist, participants created different collages that described their experiences around brain health and dementia prevention (Figure 4). There were discussions on the benefit of using art for promoting brain health and as a strategy to reduce dementia risk. | https://youtu.be/QLl7y49Z-ow |
| Workshop 3 | Music, movement and mind – keeping active | This workshop brought together participants and a local dance instructor for two hours of dancing, featuring music and dances from different cultures across the globe (Figure 5). Some of the dances featured include Afro dance, Merengue, Funk carioca/Favela funk, Salsa, Kizomba, Bhaṅgṛā and Soca. Each dance was preceded by a quick introduction on the dance, country of origin and type of physical activity (e.g. cardio, full body work-out, balance, endurance, lower back muscles) linked to the particular dance. The workshop highlighted the importance of how keeping active is important for brain health and dementia prevention and provided a culturally tailored approach to doing this. | https://youtu.be/N3hNjof3w_k |
| Workshop 4 | Stimulating the brain – improving our memory and brain function | During the workshop, delivered by a neuroscientist, participants made brain hats, interspersed with conversations and discussions about different parts of the brain and the function in memory and cognition (Figure 6). Participants also made different models of the brain using plasticine from the individuals’ perspectives (Figure 7) and played different games that stimulated brain function and memory. | https://youtu.be/2pV99AOkq5w |
| Workshop 5 | Our culture and brain health – storytelling around the fire | This session was conducted in collaboration with a spoken word artist from the Ghanaian community. Participants wrote and performed their own poetry about their experiences with brain health and dementia (Figure 8). Through the use of poetry, drama and storytelling, participants were encouraged to engage in discussions about brain health and dementia and provided a mechanism to talk about a very difficult issue. | https://youtu.be/3IQ2b4xcN1Q |
Photographs of participants engaging in cooking activities during Workshop 1
Images showcasing the dishes created in Workshop 1
Photos of participants engaged in arts, crafts and collage making
Photos of community members taking part in the dance workshop
Participants engaged in creating brain models and brain hats during the brain stimulation workshop
Brain models created by participants during the brain stimulation workshops
Photos of participants during the spoken word and poetry workshops
Culturally tailored brain health information resource, recipe book and digital stories
In order to make dementia-prevention messages relatable, embed behaviour change and support sustained and long-term impact, the project co-produced a culturally tailored information booklet, recipe book and digital stories. The information booklet includes relevant information on dementia for minority ethnic communities and culturally tailored lifestyle modifications to reduce the risk of developing dementia. The recipe book includes six recipes from different cultures including African, Caribbean and South Asian cuisines and highlighted health and nutrition information on ingredients that support brain health. The digital stories produced from each workshop covered key messages on brain health and dementia prevention, and shared participants’ experiences of taking part in the project.
Co-production of recipe book and key information resource
The co-production of the recipe book began with the collection of recipes from community members. This was followed by desk-based research to gather information from published research on the nutritional value and health benefits of the ingredients and to identify a selection of star ingredients. The research team then collaborated with a chef to refine the recipes, incorporating allergy information, accurate quantities and clear cooking instructions. This was compiled into the recipe book and used to guide the first workshop, ‘Our traditional food and our community – healthy eating for brain health’.
The co-production of the information resource involved synthesising evidence on dementia risk factors most prevalent among individuals from the communities involved, for example, hypertension, diet, physical inactivity and diabetes. Culturally appropriate alternatives to support sustained behaviour change were then developed. These lifestyle recommendations were further validated through consultation with community members before being compiled into the final booklet.
Workshop inclusion criteria and participants
The project focused on individuals aged 18 years and older, mainly minority ethnic communities including African, Caribbean and South Asian heritage living around Bournemouth and Dorset. Guided by findings from our co-production workshop, participants were recruited using word-of-mouth, social media posts, flyers and posters through faith-based and community organisations, hairdressers and barbering salons, and multicultural food shops facilitating access to community members. Despite a good response from members of minority ethnic communities, several spaces in each workshop were still available the week beforehand. It was decided that it would be better to fill these spaces, and so other community group members (some of whom were of White heritage) who had previously expressed an interest in taking part were invited to join in. Overall, the HBHL project included a total of 62 participants (84% female) attending the in-person workshops (Table 3). The average age was 40.2 (±14.1) years, and the majority of the participants (40.3%) identified as Black, Black British, Caribbean or African. Participants who attended the workshops were highly educated with the majority (87%) achieving education levels of a degree/masters/PhD or equivalent.
Demographic variables of participants attending HBHL workshops (n = 62)
| Variable | Number of responses n (%) |
|---|---|
| Age (years) | 40.2 (14.1) |
| Sex | |
| Male | 10 (16.1) |
| Female | 52 (83.9) |
| Ethnicity | |
| Asian or Asian British | 9 (14.5) |
| Black, Black British, Caribbean, or African | 25 (40.3) |
| Mixed or multiple ethnic groups | 3 (4.8) |
| White | 22 (35.5) |
| Other ethnic groups | 3 (4.8) |
| Education | |
| No formal qualifications | 1 (1.6) |
| Compulsory schooling | 2 (3.2) |
| Vocational training and job skills training | 5 (8.1) |
| Degree/masters/PhD level or equivalent | 54 (87.1) |
Data expressed as mean (standard deviation) or frequency (percentage).
Workshop evaluation
Evaluations of the workshops were conducted using the National Co-ordinating Centre for Public Engagement evaluation approaches for public engagement. This involved a mixed-methods process of collecting qualitative and quantitative data before, during and after the interactive workshops to assess the learning as well as acceptability of the workshops. This enabled the researchers to capture rich data on outcomes as well as the process of developing the programme. The quantitative data collection included a mix of short surveys and questions for each workshop session. Qualitative data was collected using wish trees and comments cards at each session. Additionally, due to the high success and strong relationships built with participants, there was feedback from other channels including emails and social media posts on LinkedIn, Twitter (now X) and Instagram.
What we learnt
Pre-project co-production planning sessions
Pre-project co-production planning sessions were held with individuals from the BPC Indian community and Ghanaians in South England (n = 5) and indicated a great interest and need for the project. Participants in the discussions acknowledged that, unlike long-term conditions which manifest physically, conditions relating to brain health and dementia are difficult to communicate and people may attribute causes to spiritual factors, old age, mental illness and cultural barriers. The community highlighted the importance of the project, underlining the need for initiatives that reduce stigma and create dialogue and learning around brain health and dementia. Some barriers to engagement with the community included time constraints, lack of motivation and accessibility, lack of culturally appropriate information and culturally tailored activities and tailored communication materials. In order to address some of these barriers, the sessions were held at a central university location with easy access to public transport to facilitate attendance. Participants were also incentivised by providing vouchers, branded items such as aprons and water bottles, and were able to take home co-produced outputs from the workshops. The workshop activities were also designed to be interactive, culturally tailored and diverse, ensuring stronger engagement from the community.
Impact of workshops on participants
Participants reported enjoying attending the workshops. Three main themes emerged from the qualitative analysis of the impact of the activities and participants’ experiences of taking part in the project. These were ‘Sense of fulfilment’, ‘Social connections and learning opportunity’ and ‘Wellbeing for brain health’ (Figure 9). The following are quotes describing participants experiences of the project.
Emerging themes on impact and participants’ experiences of the project
‘This event simply underlined the importance of bringing ideas of brain health to the greater public; how important it is. It also made me realise how little this topic is discussed.’ –PP1
‘Well, I don’t even know where to start about last night – it was wonderful. It was the culmination of the topic, the human connection and community and learning something new experientially. Adding also, conversing with like-minded people, getting into flow… and of course, this means people will talk about the event, which will spread the word on this vital issue!’ –PP2
‘I felt a very warm welcome by everyone and included. It was very informative regarding brain health with easy-to-read materials. The dance class was great and I’m grateful to have taken part in it.’ –PP3
‘It has definitely opened my eyes to the links diet can have on brain health. It also showed me how to eat fun and diverse meals while still doing my brain some good.’ –PP4
‘I’m definitely more aware of the risks and therefore things I can do to prevent dementia.’ –PP5
Participants increased their knowledge, perceptions and attitudes towards dementia
Participants showed significant knowledge on factors that increased a person’s risk of developing dementia and indicated readiness to use early diagnostic services which would help identify risk factors to facilitate prevention and timely intervention. Words and phrases that come to mind when participants hear the word ‘dementia’ included ‘brain shrinking’, ‘forgetfulness’, ‘confusion’, ‘loss of memory’ and ‘loss of neurons’ (Figure 10). Additionally, key words used by participants to describe what happens to a person’s brain when they developed dementia included words such as ‘memory’, ‘loss’, ‘forgetfulness’, ‘brain’ and ‘sad’, highlighting the association of dementia with memory and loss (Figure 11). Participants identified a number of factors including unhealthy eating, genetics and lifestyle choices as leading risk factors for dementia (Figure 12). The majority of participants (71%) disagreed with the perception that dementia was an inevitable part of ageing, and 84% of participants agreed that they had the ability to influence their brain health. Of the participants, 56% indicated that they would be interested to know their risk of developing dementia in later life if they had access to this type of diagnostic service from their general practitioner or other diagnostic services (Table 4).
Words and descriptions associated with dementia generated by participants
Participants’ descriptions of impact of dementia on brain health
Insights from participants on perceived dementia risk factors
Attitudes and perceptions of dementia and information on personal risk (n = 62)
| Attitudes and perceptions | Number of responses n (%) |
|---|---|
| Dementia is an inevitable part of ageing | |
| Disagree | 44 (71.0) |
| Neutral | 11 (17.7) |
| Agree | 2 (3.2) |
| Don’t know | 5 (8.1) |
| It is possible for a person to influence their brain health | |
| Disagree | 7 (11.3) |
| Neutral | 1 (1.6) |
| Agree | 52 (83.9) |
| Don’t know | 2 (3.2) |
| I would like to have information in midlife about my personal risk of developing dementia in later life | |
| Yes definitely | 35 (56) |
| Yes probably | 14 (23) |
| No probably not | 7 (11) |
| No definitely not | 3 (5) |
| Don’t know | 3 (5) |
Data expressed as frequency (percentage).
Successes and lessons learnt from our approach
In order to better understand what strategies were effective for engagement in the HBHL project, further analysis was conducted to elucidate which approaches implemented within the project were successful, why and the challenges related to using these approaches. Table 5 provides a summary of successful intervention activities, strategies that were effective for recruitment and engagement, and why these were successful. Key factors that influenced the success of the project included conceptualising the project with community members, the recruitment of participants through trusted community influencers, a lead researcher of African heritage with an understanding of cultural and community dynamics, interactive and culturally tailored workshop formats and content, providing refreshments and incentives to maximise attendance, and co-produced resources providing culturally relevant and practical strategies to sustain healthy lifestyle practices for reducing dementia risk. Despite using recruitment channels suggested by community members, there were some challenges with recruiting the required numbers of community members from minority ethnic communities for the workshops, which meant that other ethnic community groups also participated in the workshops. Learning from this showed that participants from other ethnic community groups, including those of White heritage, valued the opportunity to learn about minority ethnic cultural traditions while contributing to wider discussion on the topic of brain health and that this had no negative impact on the delivery of the culturally tailored activity. Moreover, this highlighted a wider need for sharing the recruitment strategies that were successful both in this paper and by others working in this area.
Successful and effective strategies used in the HBHL project
| What worked | Why | Challenges | |
|---|---|---|---|
| Recruitment strategy | Word-of-mouth |
|
This process can be time-consuming, requires significant effort in building trust with the community. |
| Hairdressers, food shops and trusted community leaders |
|
Researchers require knowledge on community dynamics and requires significant time for relationship building if coming from outside that community. | |
| Co-production of workshop | Co-creating key elements of workshops and practical aspects of running the workshops |
|
Aligning proposed activities with participants’ interests, project aims and availability. |
| Workshop format and content | Interactive and culturally tailored workshop activities |
|
Requires considerable time for planning activities and knowledge on cultural elements which can be embedded. |
| Project team, community facilitators and project partners | Co-creating and co-delivery of workshops with community facilitators and partners |
|
Requires time for relationship building and significant time for planning. |
| Refreshments and incentives | Refreshments, gift vouchers and project merchandise (aprons, pens and foldable bags) |
|
This could be an additional cost but very essential in providing value and recognition for lived experience and commitment to working equitably with underserved communities. |
| Representation of researchers | Lead researcher is of African heritage and an individual from a minority ethnic community |
|
There is a limited representation of researchers from underserved and minority ethnic communities in research, especially dementia research. Supporting researchers from underserved communities to work with their communities will enable the community to feel heard and balances the power dynamics. It also facilitates building trust and relationships. |
| Co-produced resources | Culturally tailored, research-informed recipe book featuring foods important from brain health Key information booklet with culturally tailored advice on dementia prevention |
|
Research on dementia in minority ethnic communities is limited. More research on links between lifestyle factors and on most common forms of dementia in minority ethnic communities are required. |
Discussion and conclusions
The HBHL project provides an example of a best-practice, multidimensional, co-produced approach due to the impact it had in engaging minority ethnic communities around dementia prevention. Building on cultural capital and using culturally competent, tailored and co-produced methods, the findings highlight the need for embedding community perspectives in developing public health messaging around difficult and stigmatised conditions such as dementia, consistent with previous research (Mokwenye, 2024). Research evidence indicates several modifiable lifestyle factors including unhealthy diet, alcohol consumption and physical inactivity, which are well-known risk factors of dementia (Alzheimer’s Research UK, 2023; Baumgart et al., 2015; National Institutes of Health, 2010; Udeh-Momoh et al., 2024). Through the interactive workshops, the project was successful in communicating the links between these lifestyle factors and dementia risk, for example by highlighting a healthy diet as key to protecting brain health by preventing obesity, type 2 diabetes and high blood pressure, and by providing cultural and practical strategies for dementia prevention. Critical elements leading to the success of this project included the ethnicity of the lead researcher, inclusion of community members in earlier stages of the project, and ensuring that materials and resources are culturally relevant. Consistent with our findings, culturally adapted dementia-prevention animations were shown to increase dementia-prevention knowledge in ethnic diverse communities (Brijnath et al., 2022, 2025). However, this project also utilised multiple culturally tailored resources (recipe books, key information resource and digital stories) and a variety of workshop themes to enable broader engagement, recognising the diversity within minority ethnic communities. Additionally, research indicates that where underrepresented populations are part of a study, it is essential for participants to interact with researchers from these or similar populations to improve the ease of communication between researchers and participants (Agyemang-Benneh et al., 2024). Researchers from underrepresented backgrounds also help to build and sustain trust from participants and aid in the acceptability of interventions as well (Agyemang-Benneh et al., 2024; Kai & Hedges, 1999; Salway et al., 2015). Longer-term impact and sustainability of the project is enhanced through the resources developed remaining publicly available for others to access without charge.
The HBHL project was able to reach and engage individuals from minority ethnic communities, however the majority of these were female and highly educated, highlighting considerations for intersectionality within underserved and ethnic minority communities. Further research and initiatives are required to reach wider groups and in other demographics, for example men or individuals with lower socio-economic status and those who are further underrepresented. This is particularly important as they are likely to experience more stigmatisation, have less access to information and may be more susceptible to misinformation around brain health and dementia. Furthermore, there was limited knowledge among participants around the different types of dementia, particularly the higher risk of vascular dementia within minority ethnic community. This highlights the need for in-depth and culturally tailored communication around vascular dementia, linking it to type 2 diabetes, obesity, hypertension and emphasising key lifestyle strategies for prevention.
Consistent with recent studies (Brijnath et al., 2023; Mokwenye, 2024), this project demonstrates the value and need for co-produced resources on brain health and dementia. Future development of culturally tailored practical advice for prevention tailored for communities to reduce stigmatisation, embed public health messages and support for individuals to make practical behavioural changes to reduce their risk of dementia are needed. Finally, a key finding from this project was the limited research that is representative of minority ethnic communities, which highlights the need for more research that is inclusive. Using culturally tailored and participatory methods has been shown here as beneficial in helping to ensure that dementia prevention, diagnosis, support services and policies are relevant to the needs of diverse communities.
Recommendations for scaling up
Future work for this project will involve expanding to other communities across the country and dedicating resources to recruitment, with the aim of engaging individuals from underrepresented groups such as those on lower incomes, with lower levels of education, men, and other demographics not reached in the current phase. Additional workshops and resources will be co-produced, offering clear, in-depth and culturally tailored communication on vascular dementia. These will highlight its links to type 2 diabetes, obesity and hypertension, while emphasising key lifestyle strategies for prevention.
Acknowledgements
We would like to acknowledge the generous support of Alzheimer’s Research UK and contributions of all the members of our community and community organisations (Bournemouth Poole & Christchurch Indian community, Ghanaian community in South England) who co-designed and participated in the Healthy Brain Healthy Life sessions and made this project a success. A huge thank you goes to Healthwatch Dorset (Louise Bate and Holly Drinkwater) and the Young Listeners who collaborated with us to deliver the workshops. A special thanks goes to the Chef Elizabeth Hagger, Barbara Touati-Evans, Peter Paul Akanko and Elizabete Fortes Andre, creative artists who co-created and co-delivered the sessions with our research team and community.
Declarations and conflicts of interest
Research ethics statement
The authors declare that research ethics approval was provided by the Bournemouth University Research Ethics Committee (Ethics ID: 42299).
Consent for publication statement
The authors declare that research participants’ informed consent to publication of findings including photos, videos and any personal or identifiable information was secured prior to publication.
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