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Inequities in dementia services for Black and minoritised communities in the UK

A policy-focused review examining barriers to dementia care access for Black and minoritised communities in the UK, highlighting gaps between national policy ambitions and local service delivery.

Key statistics 

  • around 850,000 people are living with dementia in the UK, including approximately 25,000 from Black and minoritised communities 
  • the number of people with dementia from Black and minoritised groups is expected to double to 50,000 by 2026 and increase sevenfold by 2050 

Key messages 

  • people from Black and minoritised communities are under-represented in dementia services and often present at later stages, frequently in crisis 
  • barriers to access include lack of awareness, language and literacy challenges, stigma, and difficulties navigating health systems 
  • cultural and religious values, including expectations of family care, can influence help-seeking behaviours 
  • experiences of racism, discrimination and stereotyping reduce trust in services 
  • there is a lack of culturally appropriate dementia services, including care provision that reflects cultural and religious needs 
  • national policy recognises the need for inclusive dementia care, but implementation at local level is inconsistent and fragmented 
  • decentralised commissioning contributes to a ‘postcode lottery’ in service availability and quality 
  • people from Black and minoritised communities are under-represented in dementia research, limiting their influence on service design 

Policy implications 

  • develop culturally appropriate dementia services that reflect the needs of diverse communities 
  • improve awareness and early diagnosis through targeted outreach and education 
  • strengthen accountability for local authorities and commissioners to deliver equitable services 
  • integrate health and social care services to reduce fragmentation and improve continuity of care 
  • increase representation of minoritised groups in research to inform service design 
  • address structural inequalities, including socio-economic disadvantage and discrimination, across the life course 

Gaps 

  • limited national data on how dementia services are commissioned and delivered for minoritised groups 
  • evidence on effective models of culturally appropriate dementia care remains underdeveloped 
  • lack of lived experience perspectives from Black and minoritised communities in policy and research 
  • insufficient evaluation of how policy translates into practice at local level 
  • further research is needed on long-term outcomes and cost implications of inequitable care 

Commentary
This paper examines how dementia services in the UK fail to meet the needs of Black and minoritised communities, despite longstanding policy commitments to inclusion. It shows a clear gap between national ambitions and what is delivered locally. 

A key issue is late access to care. Many individuals from these communities only engage with services at crisis point, which limits access to early diagnosis, treatment and support that could improve quality of life. 

Barriers are multiple and intersecting. These include limited awareness of dementia, language and literacy challenges, and difficulty navigating complex health and social care systems. Cultural expectations around family care also shape help-seeking, particularly where services are not seen as culturally appropriate. 

The study also highlights the role of structural factors. Experiences of racism and discrimination, alongside a lack of culturally competent services, contribute to mistrust and disengagement. At the same time, people from these communities are more likely to experience wider socio-economic disadvantage, which increases dementia risk over the life course. 

Policy frameworks such as the National Dementia Strategy emphasise inclusive and person-centred care. However, the decentralised nature of commissioning means that implementation varies widely. This creates geographical inequities, with some areas offering tailored services while others provide little targeted support. 

From a care equity perspective, the findings show that inequities are present across the entire dementia pathway, from prevention and diagnosis through to end-of-life care. Without stronger accountability and culturally appropriate service design, these disparities are likely to persist.

Barriers to social care and carers’ needs assessments in dementia

A study examining barriers faced by people with dementia and unpaid carers in accessing social care and carers’ needs assessments in England.

Key messages

  • many unpaid carers and people with dementia are unaware of their entitlement to social care and carers’ needs assessments
  • limited knowledge of services and complex systems make assessments difficult to access
  • time pressures and resource constraints affect professionals’ ability to carry out assessments
  • carers often report unmet needs even after assessments have taken place
  • poor integration between health and social care contributes to fragmented support.

Policy implications

  • clearer information may be needed to improve awareness of assessment entitlements
  • assessment processes could be simplified to improve accessibility
  • additional resources and training may support professionals to conduct timely assessments
  • stronger integration between health and social care could reduce unmet need after assessment.

Gaps

  • limited evidence on which approaches improve awareness and uptake of assessments
  • lack of evaluation of interventions to address unmet need post-assessment
  • limited insight into how barriers vary across different groups of carers.

Commentary
This study highlights inequities in access to social care and carers’ needs assessments for people with dementia and unpaid carers. Lack of awareness about entitlements and complex systems mean that support needs often go unidentified or unmet.

Barriers are reinforced by system pressures. Professionals conducting assessments face time and resource constraints, which can limit the depth and effectiveness of assessment processes.

The persistence of unmet needs after assessment points to wider structural issues. Fragmented coordination between health and social care services reduces the likelihood that identified needs translate into practical support.

From a care equity perspective, improving awareness, accessibility and integration is central to ensuring that carers and people with dementia receive support based on need rather than ability to navigate complex systems. Without addressing these barriers, existing inequalities in access and outcomes are likely to continue.

Carers’ experiences of assistive technology in dementia care at home

A qualitative study exploring how carers of people with dementia use assistive technology at home, focusing on awareness, burden and changing needs.

Key messages

  • carers often use multiple assistive technologies to support people with dementia at home
  • reported benefits include improved safety and reduced stress for carers
  • carers experience significant information gaps about available technologies
  • affordability limits access and contributes to unequal use
  • technologies are frequently abandoned as needs change over time.

Policy implications

  • centralised information and advice services could improve awareness and appropriate use
  • loan stores may support trialling technology before purchase
  • assistive technology provision should anticipate changing needs rather than one-off solutions
  • better integration with formal care services may support sustained use.

Gaps

  • limited evidence on how assistive technology use affects formal care demand
  • lack of research on incremental addition of technologies as dementia progresses
  • insufficient understanding of long-term patterns of use and technological abandonment.

Commentary
This study highlights the complex role of assistive technology in home-based dementia care. Carers often assemble multiple technologies to manage safety and daily support, reflecting both the potential value and the burden of technology use.

From a care equity perspective, information and affordability barriers are central. Carers with less access to advice or financial resources may struggle to identify suitable technologies or sustain their use as needs evolve.

The frequent abandonment of technologies underscores the importance of adaptability. Static solutions are poorly suited to the progressive nature of dementia, placing additional emotional and practical strain on carers.

Overall, the findings reinforce that the use of technology in care must be supported by clear information, ongoing advice and flexible provision. Without this, assistive technology risks increasing burden rather than supporting carers and the people they care for.

Digitalisation of financial management in dementia care

A qualitative study exploring how digital financial systems have changed money management for people living with dementia and their family carers since the COVID-19 pandemic.

Key messages

  • digitalisation has transformed how finances are managed for people living with dementia
  • tools such as direct debits and debit cards can simplify routine payments
  • digital finance systems can also increase complexity and risk for some individuals
  • older people living with dementia face barriers related to usability and digital confidence
  • unpaid carers often take on additional financial management responsibilities as a result.

Policy implications

  • digital financial systems should be designed with cognitive accessibility in mind
  • clearer safeguards are needed to support people living with dementia
  • digital literacy training could support both people with dementia and carers
  • access to appropriate devices and support is necessary to prevent exclusion.

Gaps

  • evidence is qualitative and based on lived experience
  • limited evaluation of specific interventions to support digital financial inclusion
  • lack of research on how financial digitalisation affects different socioeconomic groups.

Commentary
This study illustrates how the digitalisation of financial management brings mixed consequences for people living with dementia and those who support them. While automated payments and card-based systems can reduce day-to-day burden, they can also obscure oversight and increase dependence on others.

The findings show that digital change often shifts responsibility rather than removing it. As systems become harder to navigate, unpaid carers frequently absorb additional financial tasks, adding to existing caring pressures. These dynamics are particularly pronounced where platforms are not designed with cognitive impairment in mind.

Usability emerges as a central issue. Digital finance tools that assume high levels of confidence, memory and comprehension can inadvertently exclude people living with dementia, even when intended to simplify processes.

Overall, the study highlights the need to treat financial digitalisation as part of care infrastructure. Ensuring that systems are accessible, supported and adaptable is essential if technology is to reduce burden rather than redistribute it onto carers.

Effectiveness of assistive technology and telecare for people with dementia

A randomised controlled trial evaluating whether a comprehensive telecare package improves outcomes for people with dementia compared with a basic telecare offer.

Key messages

  • a comprehensive telecare package did not improve time living at home compared with a basic offer
  • no reduction in ‘caregiver burden’ was observed with more intensive telecare provision
  • outcomes suggest limited benefit from technology-first approaches
  • effectiveness is strongly influenced by how well technology fits individual needs and context
  • implementation and personalisation appear central to whether telecare adds value.

Policy implications

  • telecare should not be assumed to deliver benefits simply through increased provision
  • matching technology to individual capabilities, routines and environments is essential
  • commissioning should prioritise assessment, tailoring and ongoing support
  • evidence cautions against large-scale roll-out of standardised telecare packages without personalisation.

Gaps

  • limited understanding of how different implementation models affect outcomes
  • need for research on personalised and adaptive telecare approaches
  • uncertainty about longer-term impacts beyond the trial period.

Commentary
This NIHR trial provides some of the strongest evidence on the limits of telecare effectiveness in dementia care. By comparing a comprehensive telecare package with a basic offer, it challenges assumptions that more technology necessarily leads to better outcomes.

From a care equity standpoint, the findings highlight risks in technology-led approaches that do not account for individual context. Standardised packages may fail to support people with dementia whose needs, capabilities and environments vary widely.

The results align with qualitative evidence showing that personalisation, support and fit with daily life are critical to successful technology use. Without these elements, telecare may add complexity without delivering meaningful benefit.

Overall, the study highlights that the use of technology in care must be grounded in person-centred assessment and ongoing support. Technology alone is insufficient to improve outcomes, and poorly matched interventions risk diverting resources from more effective forms of care.

Everyday use and personalisation of assistive technology in dementia

A study examining how people with dementia and their family carers use, adapt and abandon assistive technology and technology-enabled care in everyday life.

Key messages

  • people with dementia and carers actively adapt and repurpose assistive technologies to fit daily routines
  • technologies are often abandoned when they do not align with lived experience or changing needs
  • unintended consequences of assistive technology use are common
  • successful use depends on contextual tailoring at home and routine level
  • many assistive technology products lack flexibility to accommodate progression of dementia.

Policy implications

  • assistive technology provision should prioritise personalisation and adaptability
  • ongoing, longitudinal support is needed rather than one-off installation
  • service models should recognise carers’ role in adapting and maintaining technology
  • procurement should consider how technologies evolve alongside changing needs.

Gaps

  • limited longitudinal evidence on sustained assistive technology use
  • lack of flexible product design that supports progression of dementia
  • insufficient integration of ethnographic insights into commissioning and practice.

Commentary
This study provides rich insight into how assistive technology is used in real-world dementia care. Rather than being passively adopted, technologies are actively adapted, modified or abandoned depending on how well they fit with everyday routines and relationships.

From a care equity viewpoint, the findings challenge assumptions that technology alone can provide support. Without tailoring, ongoing support and responsiveness to changing needs, assistive technologies may fail to deliver intended benefits and can even create new burdens.

The concept of ‘bricolage’ highlights the work done by carers to make technologies usable. This ‘invisible work’ is rarely recognised in service design or commissioning, yet it is central to whether technology supports or disrupts care.

Overall, the study stresses that the use of technology in care must be grounded in lived experience. Personalisation, flexibility and longitudinal support are essential if assistive technology is to support people with dementia and their carers equitably and sustainably.

Technology use in supported living for people with dementia

A qualitative study exploring experiences of living and caring in technology-rich supported living environments for people living with dementia.

Key messages

  • wearable devices and mobile phones were commonly used in supported living settings
  • technology was associated with increased feelings of safety and reassurance for tenants
  • residents and carers actively sought support to improve digital skills
  • carers identified factors that enabled or hindered effective technology use
  • concerns were raised around privacy, consent and autonomy.

Policy implications

  • supported living models should integrate technology with clear consent and privacy safeguards
  • ongoing digital skills support benefits both tenants and carers
  • technology adoption should be embedded within care models rather than added informally
  • guidance is needed to support ethical use of monitoring technologies in dementia care.

Gaps

  • findings are limited to supported living environments
  • other housing and care settings were not included
  • low survey response rates may limit representativeness
  • further longitudinal ethnographic research is recommended.

Commentary
This study provides insight into how technology is woven into everyday life within supported living environments for people with dementia. Rather than being experienced as purely clinical tools, technologies such as wearables and mobile phones were often described as contributing to reassurance and a sense of security.

The findings also show that technology use is relational. Tenants’ ability to benefit depended on the support of both informal and formal carers, alongside opportunities to build digital confidence. Where this support was available, technology was more likely to be used in ways that aligned with residents’ preferences.

At the same time, the study highlights ethical tensions. Monitoring and assistive technologies raised questions about privacy, consent and autonomy, particularly as cognitive capacity changes over time. These concerns highlight the importance of clear governance and ongoing dialogue with tenants and carers.

Overall, the research suggests that technology can enhance supported living when it is thoughtfully integrated into care models. Ensuring that use remains person-centred, ethically grounded and supported over time is central to avoiding harm and enabling technology to contribute positively to dementia care.

Barriers to accessing dementia care

Evidence on barriers to accessing dementia care services and inequalities in provision across England, the Netherlands and Europe.

Key statistics 

  • In the INTERDEM European study, 49 stakeholders (including people with dementia, carers and professionals) from 10 countries contributed to the analysis of inequalities in dementia care 
  • In the same study, the most frequently reported barriers were lack of awareness and information (n=18), system-level issues (n=15), and service suitability (n=10) 
  • In the England and Netherlands study, 103 carer questionnaires and 13 qualitative interviews were conducted to explore access to dementia services 
  • In this study, 52.4% of carers reported accessing support groups, while only 8.7% accessed services such as befriending or home meals 
  • The England and Netherlands study also found that many services, including home care and care homes, were partially or fully self-funded 

Key messages 

  • Individuals with dementia and their carers face multiple barriers to accessing care, including lack of awareness, system complexity, stigma and financial constraints 
  • Structural issues such as poor coordination between services and lack of a single point of contact limit access to appropriate support 
  • Cultural and language barriers contribute to reduced access for minority ethnic groups and culturally diverse populations 
  • Services are often fragmented and not tailored to individual needs, reducing their usefulness and uptake 
  • Financial barriers and reliance on self-funding create unequal access to care services 
  • There are clear cross-country differences in how dementia care is organised, contributing to variation in access across Europe 

Policy implications 

  • Improve awareness of dementia and available services among both the public and professionals 
  • Develop integrated care pathways with a clear single point of contact to support navigation of services 
  • Increase investment in culturally appropriate and linguistically accessible services 
  • Address financial barriers by improving funding models and reducing reliance on self-funding 
  • Strengthen coordination between health and social care systems to reduce fragmentation 
  • Support development of services that are tailored to different dementia types, ages and cultural needs 

Gaps 

  • Evidence is concentrated in Western Europe, with less insight from other regions 
  • Limited exploration of digital exclusion and its impact on access to dementia care 
  • Further research is needed to evaluate the effectiveness of integrated and culturally tailored care models 

Commentary 

These studies highlight consistent barriers to accessing dementia care across European settings, particularly for underserved populations. A key finding is that receiving a diagnosis does not guarantee access to appropriate support, with many individuals and carers facing ongoing challenges navigating complex and fragmented systems. 

A dominant theme across both studies is lack of awareness. Individuals often do not know what services are available or how to access them, and in many cases must actively search for support themselves. This creates an access barrier that disproportionately affects those with lower health literacy or fewer resources. 

System fragmentation further compounds these issues. The absence of a single point of contact or care coordinator means that individuals and carers are required to navigate multiple services independently. Evidence from the Netherlands suggests that having a care navigator can improve access, highlighting a potential model for wider implementation. 

Cultural and language barriers are also significant. People from minority ethnic backgrounds may face additional stigma, lack of culturally appropriate services and difficulties accessing information, contributing to lower service use. These factors illustrate how structural inequalities translate into inequities in access to care. 

Financial barriers are another key issue. Many services require partial or full self-funding, which limits access for those with fewer financial resources. This reinforces existing socio-economic inequalities and aligns with broader patterns seen in social care access. 

From a care equity perspective, these findings show how multiple barriers interact. Factors such as geography, culture, income and system design combine to shape access to dementia care. Without targeted policy action, these inequities are likely to persist, particularly for underserved groups who already face disadvantages in accessing support. 

Overall, the evidence suggests that improving dementia care access requires coordinated system-level change, alongside culturally sensitive and financially accessible services.