Barriers for access and utilization of dementia care services in Europe: a systematic review

Dementia is a group of chronic diseases characterised by cognitive impairment that progressively disrupts daily functioning and requires increasing levels of healthcare, social support, and long-term care. Support for people with dementia can be provided by formal support systems although most of the care process relies upon informal care givers. Despite the availability of formal support systems and healthcare workers, the utilization of dementia care services remains suboptimal. Factors such as non-compliance, lack of awareness, and poor care coordination contribute to this issue. Understanding these barriers is crucial for improving service utilization and alleviating the economic burden on families and national health systems.

This systematic review analysed the literature, published from 2013 to 2023, on barriers in Alzheimer and other dementia healthcare system, conducted on people living with a dementia, their caregivers, or healthcare workers in dementia care settings in Europe, following PRISMA guidelines. Searches in PubMed, Embase, PsycINFO, Health Technology Assessment Database, and Web of Science used terms related to Alzheimer's, dementia, and access barriers. Rayyan AI supported full-text review, with quality assessed via the Mixed Methods Appraisal Tool.

Over 1298 articles, 29 studies met the inclusion criteria. These studies highlighted several barriers to dementia care, categorised into information, organizational, cultural, stigma-related, financial, and logistical challenges. Informational and educational barriers included a lack of awareness and knowledge among caregivers. Organizational barriers involved poor care coordination and unclear access procedures. Cultural and stigma-related barriers were linked to societal attitudes towards dementia. Financial barriers were associated with the high costs of care, and logistical barriers included limited availability and accessibility of support services.

To enhance the quality of life for individuals living with dementia, it is crucial to address these identified barriers through tailored interventions and management programs. Improving care coordination, communication, and training for healthcare professionals, alongside reducing systemic delays, are essential steps toward more effective dementia care. Easing the burden of care with tailored interventions and management programmes is mandatory to improve the quality of life of persons living with dementia and their families.