Black Muslim Perspectives on Dementia in the UK: A Narrative Inquiry Into Perceptions,Causes,and Prevention

Abstract

Dementia poses a threat to public health, especially among ethnically diverse Muslim communities in the UK, with quite some peculiar nuances. Within these communities, Black Muslims in the UK face unique risks shaped by complex ethnic, religious, and socioeconomic factors. However, there is a dearth of research that specifically explores perspectives on dementia in this population. The aim of this study was to explore and understand the perspectives of Black Muslims in the UK regarding the causes and prevention of dementia using a qualitative narrative inquiry approach guided by Intersectionality Theory and the Sociocultural Health Belief Model. The study involved 15 Black Muslims (8 women, 7 men), aged between 30 and 69 years, residing across the UK, with diverse roles including actively engaged community members (n = 6), religious figures (n = 3), and caregivers (n = 2). Data were collected through semi-structured interviews conducted virtually via Microsoft Teams. Thematic analysis was performed using an iterative approach with NVivo 14 software. The analysis yielded five major themes: (1) low awareness, misconceptions and stigma surrounding dementia; (2) faith-based health beliefs as protective factors; (3) stress, loneliness, and socioeconomic pressures as risk factors; (4) religious ideals, healthy lifestyles, and everyday realities; and (5) need for culturally tailored dementia education and engagement. Participants highlighted gaps between Islamic health principles, such as the encouragement of physical activity and their everyday practices, influenced by structural barriers. Black Muslims hold nuanced beliefs about dementia, shaped by cultural, religious, and socio-environmental factors such as stigma, limited awareness and socioeconomic pressures. These dynamics influence how dementia is understood and the extent to which preventive behaviours are adopted. Promoting dementia prevention in these communities requires culturally sensitive interventions that align with religious teachings, supported by policy changes that invest in community education and embed culturally and faith-informed approaches within public health strategies.

Keywords

dementia black muslims United Kingdom qualitative research narrative inquiry intersectionality culture

Introduction

Dementia is a significant global health challenge, affecting approximately 982,000 people in the United Kingdom (UK), and its prevalence is estimated to increase drastically in the coming decades (Alzheimer’s Society, 2024). Black communities have 22–200% higher dementia cases than their White counterparts (Mukadam et al., 2023; Shiekh et al., 2021) and often experience delayed diagnosis, poorer prognoses, and reduced access to support (Carter et al., 2024). Meanwhile, Muslims in the UK face elevated levels of poverty, social exclusion, and healthcare access barriers (Office for National Statistics, 2023), which are factors that contribute to dementia prevalence. Yet, most research classifies “Black” and “Muslim” as separate, uniform categories, overlooking those who identify as both.

Nonetheless, a few studies have explored public perceptions of dementia in broader Black (Philip et al., 2024) or Muslim (Daher-Nashif et al., 2024) populations. However, none of these studies has focused specifically on Black Muslims in the UK – a distinct group positioned at the intersection of ethnic, religious, and socioeconomic marginalisation, likely to experience complex structural disadvantages, including high poverty rates, lower educational attainment, and systemic barriers to healthcare access, which may exacerbate their vulnerability to dementia (Deckers et al., 2019).

Furthermore, there is evidence that validates cultural and religious worldviews as having a solid influence on health behaviours and service engagement (Mokwenye, 2024). In both Black and Muslim communities in the UK, dementia is often viewed through a spiritual or moral lens as a test of faith, punishment, or natural ageing beliefs, either to commonise or deny the disease, but which indirectly reinforces stigma and delays help-seeking (Mokwenye, 2024; Philip et al., 2024; Simmons et al., 2023). Faith-based interpretations can therefore both support resilience and obscure biomedical understanding.

Community-embedded and faith-sensitive approaches have proven effective in raising dementia awareness among marginalised groups. Collaborating with religious leaders, using culturally relevant messaging, and leveraging trusted spaces such as mosques can promote earlier recognition and engagement with services (Epps et al., 2023; Oladejo et al., 2023). However, meaningful engagement requires an understanding of distinct theological perspectives, community networks, and social realities within Black Muslim populations. Without the above structure in place, dementia interventions among Black Muslims may be futile or further reinforce mistrust or become anti-cultural.

Structural inequities further complicate the following psychosocial factors. For instance, experiences of racism, discrimination, and socioeconomic disadvantage have undermined confidence in healthcare systems, reducing preventive service use and worsening dementia outcomes (Ahmed et al., 2024; Assfaw et al., 2024; Trani et al., 2024). Consequently, mitigating dementia risk within Black Muslim communities demands more than conventional medical outreach; it calls for culturally appropriate, faith-informed, and community-led interventions that reflect the complex realities of their lived experience. Crucially, such strategies must be informed by an understanding of how Black Muslims in the UK perceive dementia, its aetiology and avenues for prevention.

Exploring the perspectives of Black Muslims in the UK is especially significant, given that the 2021 census reports over 416,000 individuals identifying as Black Muslims, constituting 17.3% of the Black population and 10.8% of the Muslim community (Muslim Council of Britain, 2024). This qualitative study aims to investigate these perspectives through narrative inquiry, guided by intersectionality theory and the Sociocultural Health Belief Model (see below). It seeks to address the following research question: How do Black Muslims in the UK perceive dementia, its causes, preventive beliefs and practices, and the influence of cultural, religious, and social factors on their perceptions? By foregrounding the stories of Black Muslims in the UK, this study seeks to enhance understanding of culturally sensitive approaches to dementia and its prevention to inform the development of appropriate strategies and structures that will ultimately reduce health inequalities and improve quality of life within this underserved community.

Islamic Perspectives on Disease, Fate, and Dementia

Islamic thought encompasses three broad theological schools that shape how illness, including dementia, may be interpreted by Muslim communities (Hossain & Mughal, 2021).

The first is a fatalistic and deterministic position, which holds that all events, including illness and cognitive decline, are entirely foreordained by God (qadar). Under this view, dementia may be understood as part of a predestined fate or even divine retribution for past wrongdoing, leaving little room for human agency in prevention or treatment.

The second is a libertarian and indeterministic position, which affirms that human beings possess free will and are therefore capable of choosing to act or refrain from harmful behaviours. From this standpoint, individuals bear moral responsibility for protecting their health, and preventive action is not only permissible but encouraged.

The third is a reconciliatory position that integrates both: God is understood to have granted human beings free will, yet ultimate outcomes remain within His knowledge and will. Illness may be a trial, a source of spiritual elevation, or a means of expiation - not necessarily a punishment. In practice, an average Muslim may draw on any combination of these frameworks when making sense of dementia. This theological plurality may directly shape why some Black Muslims in the UK could defer to prayer and spiritual remedies while others actively pursue biomedical care, and why both responses can coexist within the same community.

Theoretical Framework

This study draws on Intersectionality Theory and the Sociocultural Health Belief Model (SHBM) to explain how faith, culture, and social position shape Black Muslims’ perceptions of dementia and their engagement with preventive care. These theories were combined to illuminate both individual beliefs and the wider structural conditions influencing health behaviours.

Intersectionality Theory

Intersectionality Theory, first articulated by Crenshaw (1989), elucidates how overlapping social identities such as race, religion, gender, and socioeconomic status interact to produce distinctive experiences of privilege and marginalisation. Applied to dementia research, this framework is especially valuable for highlighting how the convergence of Black ethnicity and Muslim religious affiliation shapes health behaviours, risk perceptions, and access to preventive care.

By focusing on these intersecting identities, intersectionality reveals why cultural and religious paradigms, such as framing cognitive decline as divine will or a test of faith, often overshadow biomedical explanations, resulting in the de-prioritisation of regular health screenings, lifestyle modifications, and early engagement with clinical services (Hossain & Mughal, 2021; Hussain et al., 2024). Simultaneously, systemic barriers grounded in racism, socioeconomic disadvantage, and historical distrust of healthcare institutions limit minority ethnic communities’ access to dementia-preventive resources, including safe environments for physical activity, health education, and culturally competent care, while exacerbating stigma around cognitive impairment and mental health (Ahmed et al., 2024; Mukadam et al., 2015).

Intersectionality Theory further clarifies how stigma is intensified when dementia is construed as a personal or communal failing, prompting families to delay diagnosis and rely on informal, faith-centred coping strategies (Hossain & Khan, 2020; Xiao et al., 2023). Moreover, it underscores the influential role of religious authorities, such as imams, mosque elders, and community organisations, as cultural brokers whose advocacy or scepticism regarding biomedical interventions decisively shapes patterns of help-seeking, disclosure, and caregiving (Ahmed et al., 2024; Moriarty et al., 2014). In centring the complex interplay of ethnicity and religion, intersectionality theory thus offers a robust conceptual lens for understanding both the dementia-related beliefs held by Black Muslim communities and the behavioural pathways, such as engagement, avoidance, or reliance on informal networks, through which these beliefs are enacted.

Sociocultural Health Belief Model

The SHBM provides a culturally sensitive framework for understanding and addressing disparities in dementia diagnosis and treatment by recognising the complex interplay of cultural, social, and structural factors that influence health behaviours. It represents an evolution of the conventional Health Belief Model, enabling the elucidation of beliefs and perceptions predicting the care-seeking behaviours related to dementia among minority ethnic populations by integrating culturally pertinent factors (Sayegh & Knight, 2013). By applying this model to dementia, the study reiterates the significance of decision-making regarding care-seeking. For instance, among Muslim communities in the UK, care-seeking is often a collective rather than purely individual decision (Hossain & Mughal, 2021). It is shaped by how family and community members perceive the individual’s vulnerability to dementia and the severity of their condition, as well as their views on the benefits of, and barriers to, engaging in preventive or diagnostic services.

The SHBM augments this theoretical framework by emphasising the significance of cultural beliefs and knowledge concerning dementia, including whether it is conceptualised as a medical ailment, an inevitable aspect of ageing, or a spiritual concern. Furthermore, it incorporates the effects of acculturation, how closely individuals conform to predominant cultural standards, and family-oriented cultural values such as familism and filial piety, which can help determine whether people with dementia are supported in a private context or with medical intervention (Sayegh & Knight, 2013).

Additionally, the model incorporates key constructs of the Health Belief Model by recognising that systemic barriers, such as racism, distrust, linguistic challenges, and the scarcity of culturally competent services, mainly influence perceived and actual barriers to engaging in preventive care. Cues to action, including advice from a religious leader or witnessing a family member’s illness, may prompt individuals to re-evaluate perceived susceptibility and severity, thereby catalysing help-seeking or the adoption of preventive behaviours.

Methods

Study Design and Ethics

Narrative inquiry was selected for this study due to its unique ability to capture detailed, culturally nuanced stories and lived experiences; in this context, those related to dementia and its prevention among Black Muslims (Butina, 2015). This qualitative approach prioritises personal and collective narratives, enabling in-depth exploration of how cultural, religious, and social factors may shape perceptions of dementia and health behaviours. Given the complex intersections of identity, spirituality, and systemic inequalities that can affect Black Muslim communities (Hossain & Mughal, 2021; Roche et al., 2021), narrative inquiry offers a culturally sensitive means of understanding these communities’ specific beliefs, attitudes, and preventive practices. The study followed the Consolidated Criteria for Reporting Qualitative Research (COREQ) checklist (Tong et al., 2007). Ethical approval was granted by Lancaster University Faculty of Health and Medicine Research Ethics Committee (Ref: FHM-2024-4227-RECR-2).

Researcher Reflexivity

The lead researcher, a Black Muslim dementia researcher, shared cultural familiarity with participants, which facilitated rapport but required reflexive awareness of potential bias. A reflexive diary documented assumptions and analytic decisions throughout the study. Regular discussions with the supervisory team supported transparency and reflexive rigour.

Sampling and Participants

Participants self-identified as Black Muslims aged 30 years or older and residing in the UK. This age threshold ensured adequate life experience and potential exposure to dementia through family or community networks. Purposive sampling was used to ensure variation across age, gender, and social roles, including imams, community leaders, and caregivers, to capture varied perspectives. Recruitment occurred through community networks, including Black Muslim associations and was supplemented by snowball sampling. The final sample size was guided by information power (Malterud et al., 2016), based on data richness and theoretical relevance.

Setting, Context and Data Collection

Interviews were conducted via Microsoft Teams between September and December 2024 to ensure accessibility for participants with work or family obligations. A semi-structured interview guide (see Supplemental file), informed by Intersectionality Theory and the SHBM, explored understandings of dementia, perceived causes, prevention, stigma, and help-seeking. Interviews lasted approximately 1 hour, were audio-recorded with consent, and transcribed verbatim. Thirteen interviews were individual; one involved a couple being interviewed jointly.

Data Analysis

Data were analysed thematically using Clarke and Braun (2017) iterative approach. The lead researcher conducted inductive coding, followed by constant comparison to refine and merge codes into broader themes. Theoretical concepts from Intersectionality Theory and SHBM guided interpretation, situating participants’ narratives within cultural and structural contexts. The analysis was facilitated using NVivo 14 software to support data management, coding, and theme development.

Rigour and Trustworthiness

Triangulation was achieved through a reflexive diary, which enabled ongoing critical reflection on the researcher’s positionality and analytical decisions. Initial coding was reviewed by a second researcher (KK), who independently coded a sample of transcripts. The two coders then compared interpretations, discussed discrepancies, and refined the coding framework. This process led to the addition of several subcodes to better capture nuances in the data. Peer debriefing was conducted with three academic colleagues (CH, FA, HB) who provided critical feedback on the coding framework, theme refinement, and overall coherence of the analysis. These discussions helped to challenge assumptions and enhance analytical clarity.

Results

Fifteen participants (8 women, 7 men; aged 30–69 years) took part, mostly of Ghanaian (n = 11) and Nigerian (n = 3) heritage. The sample included imams, community leaders, caregivers, and active congregants (Table 1).

Table 1.

Characteristics of the Interviewees

ID	Gender	Age (years)	Role in the Muslim community	Caregiver of someone with dementia
P1	Woman	40	Actively engaged	No
P2	Man	69	Senior community member	No
P3	Woman	44	Community member	Yes
P4	Woman	37	Actively engaged	No
P5	Woman	59	Muslim leader	No
P6	Man	64	Senior community member	No
P7	Man	50	Actively engaged	No
P8	Man	30	Youth leader	No
P9	Woman	30	Muslim leader	No
P10	Woman	41	Community member	No
P11	Man	41	Actively engaged	No
P12	Woman	37	Community member	No
P13	Woman	40	Actively engaged	Yes
P14	Man	30	Actively engaged	No
P15	Man	64	Muslim leader	No

Five interconnected themes emerged, each comprising several sub-themes that reflect the complex and layered understandings of dementia and its prevention within this community (Table 2). To substantiate and enrich each theme, illustrative quotations are included throughout the interview excerpts. For readability and coherence, quotations have been lightly edited for grammatical accuracy while preserving their original meaning and voice.

Table 2.

Definitions of Major Themes and Sub-themes

Theme	Sub-theme	Definition	Quotes
1. Low awareness, misconceptions and stigma surrounding dementia	1.1 Dementia as ageing, madness, or spiritual affliction.	Dementia is commonly viewed as a natural part of ageing, madness or witchcraft rather than a medical condition.	“Dementia is often misunderstood and seen as madness. Because of that, people don’t talk about it, and without talking, we can’t get help”. P13-Woman-40
	1.2 Cultural and linguistic invisibility	Lack of culturally relevant language or frameworks inhibits understanding and discussion.
	1.3 Shame, concealment, and reliance on spiritual solutions	Families conceal dementia symptoms due to social stigma. And some rely exclusively on spiritual healing in place of clinical care.
2. Faith-based health beliefs and practices as protective factors	2.1 Cognitive, physical, and spiritual benefits of religious practice	Practices like Qur’an memorisation, daily prayer and fasting promote mental and physical wellbeing.	“Islam prohibits smoking and alcohol, encourages a healthy and active lifestyle, and promotes overall wellness” P9-Woman-30
	2.2 Community cohesion and abstinence as protective	Strong communal ties foster emotional support and mental resilience.
3. Stress, loneliness, and socioeconomic pressures as risk factors	3.1 Chronic stress, discrimination, and financial strain	Financial insecurity and demanding work affect mental health. Discrimination exacerbates stress and health disparities.	“Life challenges definitely contribute to what we’re seeing… Many people who come from abroad to live here in the UK have to work extremely hard - long hours, day and night - just to provide for their families here and back home. That alone causes stress”. P13-Woman-40
	3.2 Social and emotional isolation	Isolation is seen as a key contributor to cognitive decline. Marital and family disruptions are linked to psychological strain.
4. Religious ideals, healthy lifestyles, and everyday realities	4.1 Traditional diets and islamic principles of moderation	Whole-food-based traditional diets and islamic principles of diet moderation are seen as cognitively protective.	“Honestly, I wouldn’t say I’m 100% confident—maybe 65% to 70%. Sometimes life gets in the way. You feel burnt out or overwhelmed and you stop exercising or taking care of yourself. Even faith can fluctuate- it’s not always steady”. P8-Man-30
	4.2 Routine physical activity and embodied faith.	Movement through lifestyle and prayer supports physical health.
	4.3 Gaps between religious ideals and lived realities.	Faith-based health practices are often disrupted by stress, fatigue, or lifestyle challenges.
5. Need for culturally tailored dementia education and community engagement	6.1 Trusted religious and community networks	Trusted religious and ethnic platforms can disseminate health information.	“Also, within the muslim community, we place a lot of trust in religious leaders—like imams, scholars, and sheikhs. These leaders could include dementia prevention messages in their sermons. Muslims are more likely to listen and act if they hear these messages from trusted religious figures”. P8-Man-30
	6.2 Community ownership and peer-led initiatives	Involving community members fosters trust and sustainability.

Theme 1: Low Awareness, Misconceptions and Stigma Surrounding Dementia

This theme captures how dementia was widely misunderstood and culturally silenced, often perceived as a normal part of ageing, madness, or a spiritual affliction. Stigma and shame discouraged open discussion and delayed help-seeking.

Sub-Theme 1: Dementia as Ageing, Madness, or Spiritual Affliction

Many participants viewed dementia as a natural part of ageing rather than a distinct medical condition.

Personally, I would say it's primarily old age. As you grow older, you naturally become weaker physically and mentally, losing memory and awareness. P15-Man-64

Dementia, they’ve kind of accepted as just old age. P1-Woman-40

But I do believe there may be people who have symptoms of dementia. That’s just part of human nature. P2-Man-69

This normalisation and trivialisation of dementia symptoms led to under-diagnosis:

Nobody had taken it seriously … Now she’s being treated for a mild stroke, but no one has raised dementia as a concern. P1-Woman-40.

Others equated dementia with madness:

They used to think it [dementia] was a kind of madness ... P15-Man-64

For some, dementia was attributed to spiritual causes such as curses or witchcraft, often blending African traditional beliefs with Islamic worldviews:

But from an African perspective, traditionally, if someone had dementia, people thought it was caused by spiritual issues - maybe family curses or black magic. P11-Man-41

These explanations reflect the fatalistic theological strand described above, where dementia is understood as divinely ordained rather than preventable; a framing that can deter early diagnosis and biomedical engagement.

Sub-Theme 2: Cultural and Linguistic Invisibility

A few participants noted that many African languages lack a term for dementia, reinforcing its invisibility. As one participant noted:

Even in Ghanaian dialects, I can’t recall a word for dementia. So, it’s not that the condition is foreign, but rather, our understanding and awareness of it are quite recent. P4-Woman-37

Some only encountered the term after migration or higher education:

Right. So the word “dementia” entered my vocabulary when I was at university. Before then, growing up in Ghana and even after moving to the UK, it wasn’t a term I was familiar with. P9-Woman 30

The absence of a culturally resonant term for dementia has been documented across minority groups as a contributor to confusion and delayed help-seeking (Kiadarbandsari et al., 2024), and for Black Muslims in the UK, this challenge is compounded by religious explanatory frameworks that offer alternative accounts of cognitive decline.

Sub-Theme 3: Shame, Concealment, and Reliance on Spiritual Solutions

Several participants explained that families often concealed relatives with dementia due to embarrassment about behaviours such as forgetfulness, disorientation, or inappropriate public actions.

They don’t want others to know their relative is “not well” or behaving strangely. For example, if a person with dementia touches themselves inappropriately or shouts in public, the family may avoid taking them out, even to the mosque. So stigma can stop people from seeking help. That’s more cultural than religious. P5-Woman-59

This shame was tied to perceptions of weakness or spiritual failing:

…people think they’re [people with dementia] crazy or losing their minds. … Some younger relatives may not want to help or associate with them [people with dementia] out of embarrassment. … some still believe dementia is a spiritual or mental illness, not a medical condition. P7-Man-50

While faith was seen as a source of strength, some participants worried that exclusive reliance on prayer and spiritual remedies could prevent timely medical intervention.

Some will say, … “Go and pray,” or in Islamic circles, “Do ruqyah (recitation of Qur’anic verses for spiritual healing) to drive away the spirits. P5-Woman-59

Although prayer was valued for its emotional and spiritual support, participants stressed that it should complement rather than replace medical advice. The tension between spiritual reliance and biomedical care highlights the challenges in balancing cultural practices with clinical approaches to dementia.

Theme 2: Faith-Based Health Beliefs and Practices as Protective Factors

This theme reflects the belief that Islamic teachings and practices, such as prayer, fasting, and abstinence, promote both spiritual and physical well-being, fostering discipline, connectedness, and cognitive resilience.

Sub-Theme 1: Cognitive, Physical, and Spiritual Benefits of Religious Practice

Qur’anic memorisation and recitation were perceived to stimulate the mind:

I believe Qur’an recitation helps exercise the brain, and when someone starts slowing down in that, it can signal early warning signs. P3-Woman-44

Qur’anic recitation, involving sustained memorisation, rhythmic vocalisation, and emotional engagement, may function as a form of reminiscence therapy and cognitive stimulation for older adults (Daher-Nashif et al., 2021), representing a culturally embedded protective behaviour warranting further investigation.

Prayer was also viewed as a form of physical exercise, blending movement with spirituality.

Muslims pray regularly, and the movements in our prayers are similar to some yoga stretches, which promote physical health. Fasting helps regulate the digestive system and has many health benefits. P8-Man-30.

Sub-Theme 2: Community Cohesion and Abstinence as Protective

Faith-based community life, including regular mosque attendance, study circles, and collective worship, was seen as a powerful safeguard against loneliness and stress, both of which some participants recognised as dementia risk factors.

We also have strong social circles, daily prayers at the mosque, Friday congregational prayers, conferences, these promote social connectedness, which is protective against dementia. P14-Man-30

Abstinence from alcohol and smoking, rooted in Islamic prohibition, was also identified as protective:

As … Muslims, we are discouraged from drinking alcohol and smoking … So, if we get dementia, it’s not likely from those behaviours. P2-Man-69

This is clinically significant: the 2024 Lancet Commission identifies smoking and excessive alcohol consumption among the modifiable risk factors for dementia (Livingston et al., 2024). Islamic prohibitions on both substances, if consistently observed, may therefore confer a degree of protection rooted in religious practice - an underutilised asset in public health messaging. These accounts depict Islamic faith as a source of behavioural routines, social support, and lifestyle practices that may reduce dementia risk.

Faith further encouraged care for one’s body and social engagement:

“So, my faith encourages me to engage regularly with both young and old members of the community… We’re taught to treat the body as a trust from God—to look after it in order to fulfil our purpose on earth”. P9-Woman-30

These accounts depict Islamic faith as a source of behavioural routines, social support, and lifestyle practices that may reduce dementia risk, including several that align with evidence-based modifiable risk factor reduction (Livingston et al., 2024).

Theme 3: Stress, Loneliness, and Socioeconomic Pressures as Risk Factors

This theme highlights how migration, racism, financial hardship, and social isolation were experienced as chronic stressors that undermine faith’s protective potential and increase vulnerability to cognitive decline.

Sub-Theme 1: Chronic Stress, Discrimination, and Financial Strain

Migration pressures, demanding work, and financial responsibilities to families in the UK and abroad were described as constant stressors that threaten mental health:

Yes. As a Black man living in a foreign land, we face many forms of stress. Whether it’s at work, on the way to work, or even at home, we are constantly under pressure. Stress is everywhere, and it can lead to dementia. P2-Man-69

Others specifically linked racism and the pressure to overperform in predominantly White environments with declining mental and brain health:

Black people often experience pressure in workplaces, schools, and society in general. The constant need to prove yourself, work twice as hard, or deal with racial microaggressions can affect mental health. And poor mental health can lead to or worsen the risk of dementia. P8-Man-30

Notably, few participants were aware of the epidemiological evidence showing higher dementia risk in Black communities. Their accounts reflected experiential knowledge rather than scientific awareness, revealing a disconnect between lived experience and public health communication that presents a clear target for intervention.

Sub-Theme 2: Social and Emotional Isolation

Loneliness, family breakdown, and emotional distress were also perceived as dementia risk factors. Some noted a lack of community engagement among older adults:

There’s a culture of keeping to oneself in our community. People don’t always know where to go or who to talk to. P4-Woman-37

Others pointed to strong kinship and religious networks as protective:

Loneliness is a big issue in Western societies, but Black Muslims often have larger families and stronger community ties. P14-Man-30

These contrasting views illustrate meaningful diversity within Black Muslim communities in the UK, where social connectedness varies by gender, migration history, and generational context. While faith-based values often promote belonging, shifting family structures, and work demands can erode traditional support systems.

Emotional strains within families were also seen to undermine mental resilience:

In fact, my father-in-law [person with dementia] seems to suffer from depression. He’s also started having memory loss. … Marriage plays a big role in emotional wellbeing. … But things like divorce, betrayal, or even loss of shared wealth can cause deep hurt. P13-Woman-40

These accounts demonstrate how the intersection of migration stress, discrimination, financial hardship, and social challenges were perceived to increase vulnerability to dementia, underscoring the need for structural as well as cultural interventions.

Theme 4: Religious Ideals, Healthy Lifestyles, and Everyday Realities

This theme explores tensions between Islamic health ideals and contemporary lifestyles. Although faith encourages moderation, activity, and balance, everyday stress and modern habits often hinder adherence.

Sub-Theme 1: Traditional Diets and Islamic Principles of Moderation

Several participants contrasted traditional African diets with Western habits, highlighting their perceived health benefits:

…[dementia can be] prevented through good health practices—like regular exercise and healthy eating. … growing up in Ghana, we ate very healthy food. My parents encouraged us to avoid junk food and eat plantains, stews, ‘fufu’, palm nut soup, and so on. P8-Man-30

Islamic principles of moderation were also described as protective and consistent with modern dietary advice by some participants:

But healthy eating and living can help slow it down. The Prophet taught us to divide the stomach into three parts: one for food, one for water, and one to remain empty. P5-Woman-59

These reflections suggest that both cultural and religious traditions reinforce dietary practices conducive to brain health. However, some participants noted that adherence to such principles vary, with some acknowledging that community members do not always follow religious health guidance.

Now don’t get me wrong, some …Muslims still smoke, even though it’s not allowed. P2-Man-69

Sub-Theme 2: Routine Physical Activity and Embodied Faith

As noted earlier, prayer was widely recognised as both spiritual and physical exercise, contributing to mental and physical wellbeing.

Some participants also described manual work as a natural form of physical activity:

Most of the jobs I’ve done here have been physically demanding, heavy work, which helped me stay physically active. P2-Man-69

However, Western forms of exercise, such as gym workouts, were sometimes viewed as culturally alien or unnecessary:

But other habits, like regular exercise, are more difficult. For example, in my circle, I’m known as the “Oyibo” (a Nigerian term for a white person) because I go for walks or to the gym. They joke, ‘Why would you walk aimlessly?’ or ‘Why lift metal for free?’. P14-Man-30

These accounts reveal how culturally shaped attitudes influence the adoption of health-promoting behaviours, even when faith-based principles encourage activity and balance.

Sub-Theme 3: Gaps Between Religious Ideals and Lived Realities

While participants acknowledged that Islamic teachings promote health-conscious living through moderation, abstinence, and regular activity, many admitted that these ideals are not always consistently applied or consciously linked to dementia prevention:

People may already be doing these things—like praying, eating moderately, and staying active—but they might not realise that these practices help prevent dementia. So, the issue is less about barriers within the religion and more about understanding the health benefits of what people are already doing. P9-Woman-30.

For some, the experience of illness despite healthy living led to doubt or disillusionment:

When my father passed away despite leading an extremely healthy lifestyle, I began to question things. It’s confusing when you see people who do everything “right” still suffer illness, while others who smoke and drink live long. That can discourage people from maintaining a healthy lifestyle. P1-Woman-40

These reflections highlight a tension between faith as a guide for healthy living and the unpredictability of illness, suggesting that prevention is not only behavioural but also shaped by how individuals reconcile spiritual beliefs with lived experience.

Theme 5: Need for Culturally Tailored Dementia Education and Community Engagement

This theme centres on calls for faith-sensitive, community-led dementia awareness. Participants emphasised the role of mosques, imams, and peer educators in promoting understanding and challenging stigma.

Sub-Theme 1: Trusted Religious and Community Networks

Some participants viewed mosques, prayer gatherings, and community associations as ideal platforms for delivering dementia education. These spaces were described as both trusted and regularly attended, providing a natural venue for health promotion.

Muslims are very committed to events like Jumu’ah (Friday prayers), Eid, and other religious gatherings. Health education—especially around dementia—could be incorporated into those events. If Imams talk about dementia, people will listen. P1-Woman-40

Informal community events were also seen as valuable opportunities to normalise conversations about dementia, especially when combined with health services.

We could include health check-ups at our conferences or community events. They’d reach a wide audience—men, women, and youth all in one place. P12-Woman-37

Sub-Theme 2: Community Ownership and Peer-Led Initiatives

Participants stressed that dementia education should not rely solely on external agencies but should be led by trusted community members. Embedding prevention messages within religious language and cultural values were seen as key to overcoming stigma and improving credibility.

…Use Qur’anic verses to make prevention messages relatable and credible. P2-Woman-44.

This emphasis on community ownership suggests that peer-led models of education, supported but not dominated by professionals, may be more effective in reaching Black Muslim audiences.

Across themes, participants’ accounts reflected both shared religious frames and diverse, sometimes contradictory, interpretations.

Discussion

Summary of Key Findings and Comparison With Existing Literature

Our findings reveal a complex interplay of faith, culture, and socio-environmental stressors in shaping the perceptions of dementia among Black Muslims in the UK, underscoring the need for interventions that harness religious strengths, confront stigma, and address real-world barriers to cognitive health.

Our finding of pervasive low awareness and widespread misconceptions where dementia is understood as “just ageing,” madness, or a spiritual affliction, echoes prior work documenting similar views in both Black and Muslim communities (Irfan et al., 2024; Kiadarbandsari et al., 2024; Olsson et al., 2024; R & Guruprasad, 2024). For example, Kiadarbandsari et al. (2024) reveal that across many minority groups, dementia is often misunderstood or misattributed to normal ageing, spiritual causes, or even culturally specific constructs such as “losing one’s mind” or “craziness” (e.g., el loco, hu tu). Some communities lack a direct linguistic equivalent for “dementia,” and the absence of a culturally resonant term contributes to confusion or denial of the condition. Simmons et al. (2023) and Mokwenye (2024) report that spiritual explanations can delay help-seeking and reinforce stigma, while Philip et al. (2024) highlight the conflation of dementia with supernatural causes in broader Black populations.

What our study adds is a nuanced perspective that applies an intersectional lens to the experiences of UK Black Muslims, an underserved and underrepresented group in dementia research, highlighting how these misconceptions persist and reinforcing the need for early, culturally tailored health education. In terms of health behaviours, participants’ emphasis on prayer, Qur’anic recitation, and religious coping aligns with studies among other Muslim and faith-based communities that suggest religiosity may be perceived as both a protective factor and a barrier, depending on how dementia is framed (Daher-Nashif et al., 2021, 2024). For example, while religious practices may promote social engagement and stress reduction, potentially reducing dementia risk, they can also reinforce fatalistic views that deter individuals from accessing formal health services.

Stigma, which emerged as a prominent theme in this study, has also been well-documented in the literature on minority health and dementia (Hussain et al., 2024; Mokwenye, 2024; Siette et al., 2023). Similar to findings among African American and South Asian communities (Philip et al., 2024), participants described dementia as something hidden or shameful, with disclosure that is often delayed to avoid dishonour to the family. This confirms that stigma remains a significant barrier to early diagnosis and help-seeking, particularly when framed as a reflection of spiritual deficiency or divine punishment. By foregrounding participants’ calls for mosque-based education through trusted religious leaders, our study extends the literature on faith-sensitive, community-embedded interventions (Epps et al., 2023; Oladejo et al., 2023), emphasising that credible health messaging must engage both theological and cultural frameworks to be effective.

A growing body of evidence has identified modifiable risk factors for dementia, including depression, hypertension, physical inactivity, hearing loss, low educational attainment, diabetes, visual impairment and traumatic brain injury, as targets for prevention in the general population (Jones et al., 2024) and within faith communities (Ismail et al., 2025). However, this study found limited awareness of these biomedical risk factors among participants. Instead, risk was more commonly attributed to spiritual imbalance, emotional distress, and poor dietary practices. This divergence reflects previous findings among minority ethnic groups that often conceptualise dementia through moral, spiritual, or familial lenses rather than as a neurologically driven disease (Kiadarbandsari et al., 2024; Sagbakken et al., 2020). The lack of knowledge of these modifiable risk factors cannot be disentangled from the structural gaps in how dementia information is communicated and adapted for diverse audiences, resulting in limited resonance and reach among Black Muslim communities in the UK. This gap is further compounded by intra-community discourses that emphasise moral and religious interpretations of disease, as some participants described dementia as a spiritual affliction rather than a preventable medical condition.

Mechanisms and Explanations

The findings highlight how overlapping identities and social structures jointly shape Black Muslims’ beliefs and behaviours around dementia. Intersectionality Theory captures how ethnicity, religion, and socioeconomic position intersect with migration and cultural values to influence health perceptions, while the SHBM explains how these beliefs translate into perceived risks, barriers, and cues to action. Together, they clarify how cultural, spiritual, and structural dimensions converge to shape both resilience and vulnerability (Figure 1).

Figure 1.

Intersectionality-informed Sociocultural Health Belief Model of dementia prevention and care among UK Black Muslims. The model shows how acculturation, intersectional identities, structural inequities, and family-centred values shape cultural beliefs and knowledge about dementia. These beliefs influence perceived susceptibility, severity, benefits, barriers, and threats, which in turn affect help-seeking and prevention behaviours. Cues to action such as faith-based networks, community events, and peer-led awareness can reduce barriers and promote engagement with dementia prevention and care

Some participants viewed dementia through spiritual or supernatural lenses, not as a rejection of biomedical models but as a culturally coherent explanation grounded in faith traditions. Migration experiences also shaped awareness, while cultural and religious beliefs informed perceived susceptibility and severity. Stress, loneliness, and socioeconomic hardship were widely recognised as risks, with stigma deepening the perceived severity of dementia. At the same time, faith-based practices such as prayer, fasting, and Qur’anic recitation were seen as protective, promoting discipline, social connectedness, and emotional balance.

These beliefs informed how participants evaluated the benefits and barriers of dementia prevention. While prayer and Qur'anic memorisation were perceived as cognitively beneficial, they diverge from research emphasising novelty and active learning as stronger protective factors (Thorgusen et al., 2016). Nonetheless, such practices likely support well-being through spiritual fulfilment and routine engagement. Perceived barriers, including shame, fear of stigma, and exclusive reliance on prayer, continued to constrain help-seeking.

Participants identified clear cues to action that could strengthen engagement with prevention and care: faith-based education, mosque-based initiatives, and peer-led community events. By embedding dementia awareness within trusted religious and cultural contexts, such approaches may reduce stigma, increase perceived benefits of early intervention, and facilitate timely access to care.

Practical and Policy Implications

Our findings underscore the need for culturally tailored dementia education delivered through trusted faith-based channels, co-produced with communities to ensure relevance, trust, and uptake. Existing evidence shows that dementia care provision often lacks meaningful co-production with ethnically and religiously diverse groups, resulting in poorly aligned services (Jutlla & Arblaster, 2023). Partnering with mosques to host short awareness sessions during sermons or women’s study circles can leverage the authority of religious leaders to normalise conversations about memory health. Complementary in-person or digital sessions run by trained community volunteers can share infographics, short videos, and service signposts in preferred languages. This dual approach uses existing religious infrastructures and digital networks to improve access and counter stigma.

Embedding drop-in memory-check clinics at community events, such as Eid festivals, health fairs organised by religious/ethnic associations, or seniors’ luncheons at community centres, can bring basic cognitive screening directly into familiar, non-clinical settings. Staffing these pop-up clinics with culturally competent nurses or allied health staff, ideally accompanied by a bilingual faith liaison, can demystify the screening process and facilitate immediate referrals for further assessment as needed. Over time, regular presence at these events will build trust, increase early detection rates, and reduce the “activation energy” required for help-seeking, that is, the initial emotional, cognitive, or social effort individuals must expend to seek support (Farnan Street, 2021).

At a systems level, commissioning faith-sensitive dementia training for practitioners should become standard practice. Such training should cover Islamic and cultural beliefs about ageing and illness, as well as the best approaches for engaging imams and community leaders. Embedding this within continuing professional development for health and social care staff would strengthen cultural competence and foster more equitable, respectful dementia care.

Methodological Strengths and Limitations

This study offers the first qualitative exploration of dementia perceptions among UK Black Muslims, addressing a significant evidence gap by illustrating how faith, race, and migration intersect to shape health beliefs. Using narrative inquiry enabled participants’ lived experiences and metaphors to reveal nuanced, faith-informed understandings of risk and resilience that quantitative approaches could not capture.

Although the sample was small, purposive recruitment ensured diversity across gender, age, and social roles, yielding rich data with strong information power (Malterud et al., 2016). While findings are not statistically generalisable, they may be transferable to other underserved faith-based or ethnically minoritised communities where culture and religion influence dementia-related behaviours.

Potential limitations include selection bias due to the researcher’s existing community ties and the inclusion of participants active in religious or community leadership, which may emphasise publicly engaged perspectives over private experiences. The study’s UK-wide reach strengthens relevance, but denominational and geographic variations remain underrepresented.

Conclusion

This study provides the first qualitative account of how Black Muslims in the UK perceive dementia, revealing five interconnected themes that together answer the research question. First, low awareness, misconceptions, and stigma - rooted in cultural silencing and theological fatalism - delay recognition and help-seeking, highlighting the urgent need for culturally embedded dementia literacy programmes. Second, faith-based practices, including Qur’anic recitation, communal worship, and abstinence from alcohol and smoking, represent underutilised protective assets - dementia prevention strategies should explicitly affirm and build upon these existing Islamic health values, particularly given their alignment with the modifiable risk factors identified by the Lancet Commission (Livingston et al., 2024). Third, chronic stress, racism, and social isolation - structural features of life for many Black Muslims in the UK - increase dementia vulnerability in ways that require systemic responses. Fourth, the gap between Islamic health ideals and everyday lived realities underscores that prevention cannot rely on religious instruction alone; structural barriers and cultural attitudes must also be addressed. Fifth, participants’ calls for mosque-based, community-owned, and peer-led education confirm that trusted religious and cultural networks are the most credible platforms for dementia awareness in this community. These findings reinforce the value of cross-sector collaboration between public health, faith leadership, and community organisations in addressing dementia inequalities. Future research should examine how other intersecting identities, including gender, generation, and denomination, shape dementia beliefs and preventive practices among Black Muslims in the UK.

Supplemental Material

Supplemental material - Black Muslim Perspectives on Dementia in the UK: A Narrative Inquiry Into Perceptions, Causes, and Prevention

Supplemental material for Black Muslim Perspectives on Dementia in the UK: A Narrative Inquiry Into Perceptions, Causes, and Prevention by Sanda Umar Ismail, Koser Khan, Heather Brown, Faraz Ahmed and Carol Holland in Dementia

Footnotes

Acknowledgements

We extend our sincere gratitude to all participants who generously shared their experiences and perspectives for this study.

ORCID iD

Sanda Umar Ismail

Ethical Considerations

Ethical approval for this study was obtained from the Faculty of Health and Medicine Research Ethics Committee, Lancaster University, Ref: FHM-2024-4227-RECR-2.

Author Contributions

Sanda Umar Ismail planned the study, performed all the analyses, and wrote the paper.

Koser Khan helped to plan the study, validated the data analysis, and revised the manuscript.

Heather Brown and Faraz Ahmed helped to plan the study, supervised the data analysis, and revised the manuscript.

Carol Holland was responsible for securing the funding, helped plan the study, supervised the data analysis, and revised the manuscript.

Funding

The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This work was supported by a post-doctoral fellowship from the National Institute for Health and Care Research (NIHR) Applied Research Collaboration (ARC) North West Coast. Carol Holland received funding from the BBSRC/MRC for the Cognitive Frailty Interdisciplinary Network; grant number: BB/W018322/1. The views expressed are those of the authors and not necessarily those of the funders.

Declaration of Conflicting Interests

The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Data Availability Statement

The qualitative interview data supporting this study’s findings are not publicly available. De-identified excerpts may be available from the corresponding author on reasonable request.*

Supplemental Material

Supplemental material is available online.

Author Biographies

Dr Sanda Umar Ismail is a National Institute for Health and Care Research (NIHR) Dementia Research Fellow with the Applied Research Collaboration (ARC) North West Coast, jointly based at Lancaster University and the University of Liverpool. His research focuses on dementia prevention and the development of culturally tailored approaches to care for faith-based and minority ethnic communities. He is particularly interested in how religion, culture, and social context interact to shape dementia risk, resilience, and care experiences.

Koser Khan is a Senior Research Associate based at Lancaster University, in the NIHR ARC North West Coast Equitable Place-Based Health and Care theme. Her research focuses on health inequalities and co-producing research. She is particularly interested in involving local communities to address heath inequalities and shape service delivery. She has a background working in the NHS and local authorities supporting evaluation and engagement within public health.

Professor Heather Brown is an applied health economist with a particular interest in the causes and consequences of health inequalities and evaluating policies that mitigate or exacerbate these inequalities. She is the theme lead for Equitable Place Based Health and Care in NIHR ARC North West Coast.

Dr. Faraz Ahmed is a public health researcher with expertise in mixed-methods approaches and international health, examining how social and structural factors shape health outcomes and care experiences. His research focuses on dementia, patient experience, and equity in health and care services, with a particular interest in addressing inequalities affecting minority ethnic communities.

Professor Carol Holland is a psychologist with expertise in cognitive ageing and frailty. Using mixed methods, she focuses on reduction of risk factors for frailty, cognitive decline and dementia across the lifespan, as well as impacts of cognitive changes on function and wellbeing. She led the BBSRC funded Cognitive Frailty Interdisciplinary Network, CFIN, and is past President of the British Society of Gerontology.

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