Barriers to accessing dementia care

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.