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

IntroductionThe 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.ObjectivesThis systematic review aims to identify unmet needs and...

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Main Authors: Michele Sorrentino, Michelangelo Mercogliano, Claudio Fiorilla, Irene Stilo, Federica Esposito, Marcello Moccia, Luigi Lavorgna, Giuseppina Affinito, Elena Salvatore, Maria Pia Sormani, Anna Odone, Azeem Majeed, Fabiana Rubba, Maria Triassi, Raffaele Palladino
Format: Article
Language:English
Published: Frontiers Media S.A. 2025-08-01
Series:Frontiers in Public Health
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Online Access:https://www.frontiersin.org/articles/10.3389/fpubh.2025.1605993/full
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author Michele Sorrentino
Michele Sorrentino
Michelangelo Mercogliano
Claudio Fiorilla
Irene Stilo
Federica Esposito
Marcello Moccia
Marcello Moccia
Luigi Lavorgna
Giuseppina Affinito
Elena Salvatore
Maria Pia Sormani
Anna Odone
Anna Odone
Azeem Majeed
Fabiana Rubba
Maria Triassi
Maria Triassi
Raffaele Palladino
Raffaele Palladino
Raffaele Palladino
author_facet Michele Sorrentino
Michele Sorrentino
Michelangelo Mercogliano
Claudio Fiorilla
Irene Stilo
Federica Esposito
Marcello Moccia
Marcello Moccia
Luigi Lavorgna
Giuseppina Affinito
Elena Salvatore
Maria Pia Sormani
Anna Odone
Anna Odone
Azeem Majeed
Fabiana Rubba
Maria Triassi
Maria Triassi
Raffaele Palladino
Raffaele Palladino
Raffaele Palladino
author_sort Michele Sorrentino
collection DOAJ
description IntroductionThe 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.ObjectivesThis systematic review aims to identify unmet needs and barriers in European dementia care, providing a framework to improve health strategies.MethodsFollowing 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.ResultsFrom 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.ConclusionThere is need for public policies to enhance education, community support, and dementia awareness, with a focus on culturally sensitive care.
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spelling doaj-art-0b36ce10de8f419d9b16844ebcd16a7c2025-08-20T04:14:18ZengFrontiers Media S.A.Frontiers in Public Health2296-25652025-08-011310.3389/fpubh.2025.16059931605993The needs and unmet needs for people living with dementia, caregivers and care workers in dementia health care systems: a systematic reviewMichele Sorrentino0Michele Sorrentino1Michelangelo Mercogliano2Claudio Fiorilla3Irene Stilo4Federica Esposito5Marcello Moccia6Marcello Moccia7Luigi Lavorgna8Giuseppina Affinito9Elena Salvatore10Maria Pia Sormani11Anna Odone12Anna Odone13Azeem Majeed14Fabiana Rubba15Maria Triassi16Maria Triassi17Raffaele Palladino18Raffaele Palladino19Raffaele Palladino20Department of Public Health, University “Federico II” of Naples, Naples, ItalyDepartment of Public Health, Experimental and Forensic Medicine, University of Pavia, Pavia, ItalyDepartment of Public Health, University “Federico II” of Naples, Naples, ItalyDepartment of Public Health, University “Federico II” of Naples, Naples, ItalyDepartment of Public Health, University “Federico II” of Naples, Naples, ItalyDepartment of Public Health, University “Federico II” of Naples, Naples, ItalyDepartment of Molecular Medicine and Medical Biotechnology, Federico II University of Naples, Naples, ItalyMultiple Sclerosis Unit, Policlinico Federico II University Hospital, Naples, ItalyDepartment of Advanced Medical and Surgical Sciences, University of Campania “Luigi Vanvitelli”, Naples, ItalyDepartment of Public Health, University “Federico II” of Naples, Naples, ItalyDepartment of Molecular Medicine and Medical Biotechnology, Federico II University of Naples, Naples, ItalyDepartment of Health Sciences, University of Genova, Genova, ItalyDepartment of Public Health, Experimental and Forensic Medicine, University of Pavia, Pavia, ItalyMedical Direction, Fondazione IRCCS Policlinico San Matteo, Pavia, ItalyDepartment of Primary Care and Public Health, School of Public Health, Imperial College, London, United KingdomDepartment of Public Health, University “Federico II” of Naples, Naples, ItalyDepartment of Public Health, University “Federico II” of Naples, Naples, ItalyInterdepartmental Research Center in Healthcare Management and Innovation in Healthcare (CIRMIS), Naples, ItalyDepartment of Public Health, University “Federico II” of Naples, Naples, ItalyDepartment of Primary Care and Public Health, School of Public Health, Imperial College, London, United KingdomInterdepartmental Research Center in Healthcare Management and Innovation in Healthcare (CIRMIS), Naples, ItalyIntroductionThe 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.ObjectivesThis systematic review aims to identify unmet needs and barriers in European dementia care, providing a framework to improve health strategies.MethodsFollowing 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.ResultsFrom 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.ConclusionThere is need for public policies to enhance education, community support, and dementia awareness, with a focus on culturally sensitive care.https://www.frontiersin.org/articles/10.3389/fpubh.2025.1605993/fulldementianeedsystematic reviewAlzheimer’s diseasecaregiverhealthcare workers
spellingShingle Michele Sorrentino
Michele Sorrentino
Michelangelo Mercogliano
Claudio Fiorilla
Irene Stilo
Federica Esposito
Marcello Moccia
Marcello Moccia
Luigi Lavorgna
Giuseppina Affinito
Elena Salvatore
Maria Pia Sormani
Anna Odone
Anna Odone
Azeem Majeed
Fabiana Rubba
Maria Triassi
Maria Triassi
Raffaele Palladino
Raffaele Palladino
Raffaele Palladino
The needs and unmet needs for people living with dementia, caregivers and care workers in dementia health care systems: a systematic review
Frontiers in Public Health
dementia
need
systematic review
Alzheimer’s disease
caregiver
healthcare workers
title The needs and unmet needs for people living with dementia, caregivers and care workers in dementia health care systems: a systematic review
title_full The needs and unmet needs for people living with dementia, caregivers and care workers in dementia health care systems: a systematic review
title_fullStr The needs and unmet needs for people living with dementia, caregivers and care workers in dementia health care systems: a systematic review
title_full_unstemmed The needs and unmet needs for people living with dementia, caregivers and care workers in dementia health care systems: a systematic review
title_short The needs and unmet needs for people living with dementia, caregivers and care workers in dementia health care systems: a systematic review
title_sort needs and unmet needs for people living with dementia caregivers and care workers in dementia health care systems a systematic review
topic dementia
need
systematic review
Alzheimer’s disease
caregiver
healthcare workers
url https://www.frontiersin.org/articles/10.3389/fpubh.2025.1605993/full
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