The needs and unmet needs for people living with dementia, caregivers and care workers in dementia health care systems: a systematic review

Michele Sorrentino^1,2Michelangelo Mercogliano¹Claudio Fiorilla^1*Irene Stilo¹Federica Esposito¹Marcello Moccia^3,4Luigi Lavorgna⁵Giuseppina Affinito¹Elena Salvatore⁴Maria Pia Sormani⁶Anna Odone⁷Azeem Majeed⁸Maria Triassi^1,9Raffaele Palladino^1,10,9*

• ¹Department of Public Health, School of Medicine and Surgery, University of Naples Federico II, Naples, Campania, Italy
• ²PhD National Programme in One Health approaches to infectious diseases and life science research, Department of Public Health, Experimental and Forensic Medicine, University of Pavia, Pavia, Lombardy, Italy
• ³Multiple Sclerosis Unit, Policlinico Federico II University Hospital, Naples, Campania, Italy
• ⁴Department of Molecular Medicine and Medical Biotechnology, School of Medicine and Surgery, University of Naples Federico II, Naples, Campania, Italy
• ⁵Department of Medical and Surgical Sciences, University of Campania Luigi Vanvitelli, Napels, Campania, Italy
• ⁶Department of Health Sciences, University of Genova, Genova, Italy
• ⁷Unit of Forensic Medicine and Forensic Sciences, Department of Public Health, Experimental and Forensic Medicine, University of Pavia, Pavia, Lombardy, Italy
• ⁸Department of Primary Care and Public Health, School of Public Health,Imperial College, London, United Kingdom
• ⁹Interdepartmental Research Center in Healthcare Management and Innovation in Healthcare, University of Naples Federico II, Naples, Campania, Italy
• ¹⁰Department of Primary Care and Public Health, School of Public Health, Faculty of Medicine, Imperial College London, London, England, United Kingdom

Introduction: The prevalence and costs of dementias are rising due to demographic changes. Dementia care depends largely on informal caregivers and fragmented healthcare systems that often fail to meet the needs of people with dementia. Objectives: This systematic review aims to identify unmet needs and barriers in European dementia care, providing a framework to improve health strategies.Methods: Following PRISMA guidelines, articles from 2013 to 2023 were screened from Embase, PsycINFO, HTA Database, and Web of Science. The Mixed Methods Appraisal Tool was used for evaluation.Results: From 3,738 articles, 47 met the inclusion criteria. Through a narrative synthesis, the review identified unmet needs and barriers among People Living with Dementia, caregivers, and healthcare workers. Psychosocial and emotional support are essential for managing stress and ensuring quality of life. Caregivers demand education about dementia care, progression, and self-care, while healthcare workers need training, and interdisciplinary teams. Cultural sensitivity is critical for addressing stigma and facilitating inclusive care for ethnic minorities. Healthcare access remains fragmented, thereby decreasing continuity of care for families. High costs, bureaucratic complexity, and geographical inequalities, particularly in rural areas can be barrier to care for People Living with Dementia and their families. The COVID-19 pandemic disrupted social support services, increasing distress and uncertainty. About limitation, publication bias and geographical bias from focus on Europe were possible, potentially overlooking insights from other regions.Conclusions: There is need for public policies to enhance education, community support, and dementia awareness, with a focus on culturally sensitive care.