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. 2025 Aug 20:13:1605993.
doi: 10.3389/fpubh.2025.1605993. eCollection 2025.

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   2 , Michelangelo Mercogliano #  1 , Claudio Fiorilla  1 , Irene Stilo  1 , Federica Esposito  1 , Marcello Moccia  3   4 , Luigi Lavorgna  5 , Giuseppina Affinito  1 , Elena Salvatore  3 , Maria Pia Sormani  6 , Anna Odone  2   7 , Azeem Majeed  8 , Fabiana Rubba  1 , Maria Triassi  1   9 , Raffaele Palladino  1   8   9
Affiliations

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

Michele Sorrentino et al. Front Public Health. .

Abstract

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.

Conclusion: There is need for public policies to enhance education, community support, and dementia awareness, with a focus on culturally sensitive care.

Keywords: Alzheimer’s disease; caregiver; dementia; healthcare workers; need; systematic review; unmet needs.

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Conflict of interest statement

MMo has received financial support by the MUR PNRR Extended Partnership (MNESYS no. PE00000006, and DHEAL-COM no. PNC-E3-2022-23683267); research grants from the ECTRIMS-MAGNIMS, the UK MS Society, and Merck; and honoraria from Biogen, BMS Celgene, Ipsen, Jansenn, Merck, Novartis, Roche, and Sanofi-Genzyme; and serves as editorial board member in Neurology and Multiple Sclerosis Journal. AM is supported by the NIHR Applied Research Collaboration NW London. The views expressed in this publication are those of the authors and not necessarily those of the NIHR or the Department of Health and Social Care. In the last 3 years, RP has received support from the UK MS Society (Award 146) and has taken part in advisory boards/consultancy for MSD, Sanofi, and BMS. MaS reported personal fees from Alexion, Biogen, Immunic, Merck, Novartis, Roche, Sanofi, and Viatris outside the submitted work. MMo and AO declared that they were an editorial board member of Frontiers, at the time of submission. This had no impact on the peer review process and the final decision. The remaining authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest. The author(s) declared that they were an editorial board member of Frontiers, at the time of submission. This had no impact on the peer review process and the final decision.

Figures

Figure 1
Figure 1
PRISMA Flow diagram of literature search, abstract screen, full article assessment for exclusion and inclusion criteria with most common reasons for exclusion detailed.
See this image and copyright information in PMC

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