Moving Beyond Engagement: Co-Producing Dementia Support with South Asian Communities in Scotland

In this blog, Vinodhini Murugavel, Lecturer in Mental Health Nursing, UWS Alzheimer Centre for Policy and Practice shares an overview of her research “Moving Beyond Engagement: Co-Producing Dementia Support with South Asian Communities in Scotland.”

Dementia is a growing public health concern in Scotland, yet its impact is neither uniform nor evenly understood across the population. Around 90,000 people are estimated to be living with dementia in Scotland, but such figures fail to capture the unequal distribution of risk, access to care, and lived experience across different communities. Scotland’s population is becoming increasingly diverse, with over 7% identified as belonging to minority ethnic groups and South Asian communities forming one of the largest proportions within this population. These demographic shifts require a critical reassessment of how dementia research, education, and services are conceptualised and delivered. Existing approaches assume that all South Asian communities are culturally similar, limiting their relevance and ability to meet the needs of diverse communities.

The insights presented here draw on my early conversations with community partners who work closely with South Asian carers, as well as with community and religious leaders representing a range of South Asian groups across Scotland. These discussions were undertaken as part of the development of a research proposal for the Empower Dementia Network Plus. Importantly, in my first opportunity as a trainee researcher, my focus was on moving beyond consultation towards co-production, with a clear distinction between participants and co-researchers. Such an approach recognises community members as knowledge holders rather than passive recipients of services.

A critical theme emerging from these conversations is the diversity within South Asian communities. Policy and practice frequently treat South Asian populations as a unified group, yet they are remarkably different in language, religion, migration histories, and cultural practices. Pakistani, Indian, Bangladeshi, and Nepali communities differ not only among themselves but also within subgroups shaped by region, faith, caste, and generational position. This diversity complicates the design of dementia support. The heavy reliance on translated or transliterated materials and interpreter services is often insufficient and fails to provide a person-centred approach to care. While these may facilitate communication, they fail to address the conceptual and cultural meanings attached to dementia. As one stakeholder noted, “There is no clear word for dementia; the words we use make it sound frightening or embarrassing.” This reflects a gap in cultural understanding where the term “dementia” is not only misunderstood but framed within cultural narratives of fear, stigma, and moral judgment.

These cultural beliefs are also linked to wider inequalities in the organisation and access to health care. Evidence across the UK suggests that South Asian populations may face an increased risk of developing dementia due to a higher prevalence of cardiovascular conditions such as diabetes and hypertension (Mukadam et al., 2023). Simultaneously, they experience delays in diagnosis and reduced access to appropriate services, often presenting at a later, more severe stage of illness or at a crisis point. In Scotland, these issues are compounded by the limited availability of culturally appropriate diagnostic tools. Clinicians have reported difficulty in assessing dementia among minority ethnic populations due to the inadequacy of standardised instruments, raising concerns about misdiagnosis and inequitable care. These patterns illustrate that disparities are systemic rather than incidental, reflecting institutional limitations rather than individual behaviours.

Stigma remains a persistent and underestimated factor. Within many South Asian communities, dementia is frequently normalised as part of ageing or interpreted as a source of shame. This perception discourages early engagement with services. The statement, “People think memory problems are just old age or something shameful,” illustrates how cultural narratives delay recognition and intervention. Consequently, help-seeking often occurs at crisis points, as reflected in the observation that “By the time families come forward, they are already exhausted and in crisis.” These accounts indicate that awareness campaigns alone are insufficient. Without addressing deeper cultural beliefs and social norms, interventions risk remaining superficial and ineffective.

Family structures play a central role in shaping dementia care. In South Asian contexts, caregiving is often framed as a moral obligation embedded in family life rather than as a defined role. This is reflected in the assertion, “We do not see ourselves as carers, this is just what families do.” While this value system emphasises responsibility and interdependence, it also obscures the intensity and burden of care. Gendered expectations are particularly evident, with daughters-in-law/ daughters often expected to assume primary caregiving responsibilities regardless of their preparedness, willingness or capacity. This expectation is rarely acknowledged in formal service frameworks, yet it significantly shapes access to support and wellbeing outcomes, including the carer.

At the same time, male carers remain largely invisible. Cultural expectations discourage men from identifying as carers, and the label itself may conflict with social norms and perceptions of masculinity. This reluctance results in exclusion from support systems that rely on self-identification. Consequently, both women and men are marginalised in different ways, with women’s caregiving normalised and unrecognised, and men’s caregiving rendered invisible. Such dynamics reveal the limitations of current service models, which fail to account for culturally specific constructions of care and identity.

Structural barriers within health and social care systems further exacerbate these challenges. Stakeholders consistently reported a lack of cultural understanding among professionals, particularly regarding family dynamics, religious practices, and caregiving roles. One participant noted, “Professionals do not always understand our family structures, faith, or caring roles.” This disconnect undermines trust and limits effective engagement. The continued reliance on standardised assessment tools and translated materials reflects a superficial approach to inclusion, which does not address the structural foundations of inequality. Effective care requires not only adaptation but transformation of underlying systems.

The current research also reflects similar limitations. Minority ethnic communities remain significantly underrepresented in dementia research across the UK, raising concerns about how useful and relevant current evidence is, as many studies do not adequately include or report data on these populations (Jordão et al., 2025; Krishnan et al., 2024). Community partners highlighted experiences of participation fatigue through comments like “Why should we participate in research when we are not informed of the income?” “What has changed in a decade? I am still speaking about the same barriers, such as language”. This creates scepticism about the value of research and undermines trust. Ethical engagement requires more than recruitment and demands accountability, transparency, demonstrable benefit for participating communities and communication and dissemination of that benefit.

Taken together, these insights call for a fundamental shift from engagement to co-production. Co-production requires long-term relational work, shared decision-making, and recognition of lived experience as a form of expertise. It challenges traditional methods in which ethnic minority communities were merely participants and instead promotes partnership-based approaches that are responsive to community contexts. Importantly, co-production must account for diversity within South Asian communities and avoid generalised solutions. A single intervention is unlikely to be effective across contexts marked by linguistic, cultural, and religious variation.

As Scotland’s demographic composition continues to evolve, the limitations of current approaches will become more pronounced. Addressing inequities in dementia care requires critical engagement with cultural, structural, and institutional factors. This includes rethinking how knowledge is produced, how services are designed, and how communities are involved. Without such changes, efforts to improve dementia care will remain partial and exclusionary. A shift towards co-produced, culturally responsive approaches is essential for achieving equitable and effective dementia support.

References:

Jordão, M., Gong, L., Andre, D., Akhtar, A., Nwofe, E., Hawkins, R., Best, K., Parveen, S., Windle, K. and Clegg, A., 2025. Minoritised ethnic groups and modifiable dementia risk: a scoping review of UK-based evidence. Journal of Epidemiology and Community Health. Available at: [nrscotland.gov.uk]

Krishnan, A., Pathak, A., Nicholas, T.B., Lee, J., Waite, L. and Stanaway, F., 2024. Racial and ethnic minority representation in dementia risk factor research: a scoping review. BMJ Open, 14(9), e085592. Available at: [nrscotland.gov.uk]

Mukadam, N., Marston, L., Lewis, G., Mathur, R., Lowther, E., Rait, G. and Livingston, G., 2023. South Asian, Black and White ethnicity and the effect of potentially modifiable risk factors for dementia: A study in English electronic health records. PLOS ONE, 18(10), e0289893. Available at: [mygov.scot]

Vino is keen to explore this topic further through doctoral study and welcomes opportunities to collaborate, engage in discussion, receive expert feedback, and connect with others who share an interest in this area.

Contact: vinodhini.murugavel@uws.ac.uk

Lecturer in Mental Health Nursing, UWS

Alzheimer Scotland Centre for Policy & Practice