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Optimizing access to and use of formal dementia care

Qualitative findings from the European Actifcare study

Bibliographic Data

ID12288317
AuthorsLiselot Kerpershoek (0000-0001-6774-3480, Alzheimer Centre Limburg Maastricht University Maastricht Netherlands), Claire Wolfs (0009-0000-9715-0520, Alzheimer Centre Limburg Maastricht University Maastricht Netherlands), Frans R J Verhey (0000-0002-8307-8406, Alzheimer Centre Limburg Maastricht University Maastricht Netherlands), Hannah Jelley (0000-0002-2164-7327, Bangor University Bangor UK), Bob Woods (0000-0002-6781-651X, Bangor University Bangor UK), Anja Bieber (0000-0002-9506-2532, Martin‐Luther University Halle‐Wittenberg Halle Germany), Gabriele Bartoszek (Martin‐Luther University Halle‐Wittenberg Halle Germany), Astrid Stephan (0000-0002-5068-918X, Martin‐Luther University Halle‐Wittenberg Halle Germany), Geir Selbaek (0000-0001-6511-8219, Norwegian National Advisory Unit on Ageing and Health Vestfold Hospital Tonsberg Norway), Siren Eriksen (0000-0002-5541-0934, Norwegian National Advisory Unit on Ageing and Health Vestfold Hospital Tonsberg Norway), Britt‐Marie Sjölund (0000-0002-4621-3816, Aging Research Center (ARC), Department of Neurobiology, Care Sciences and Society (NVS) Karolinska Institutet and Stockholm University Stockholm Sweden), Louise Hopper (0000-0002-9382-5241, School of Nursing and Human Sciences Dublin City University Dublin Ireland), Kate Irving (0000-0002-9255-4574, School of Nursing and Human Sciences Dublin City University Dublin Ireland), Maria J Marques (0000-0001-9214-4180, CEDOC, Nova Medical School, Faculdade de Ciências Médicas Universidade Nova de Lisboa Lisbon Portugal), Manuel Goncalves-Pereira (0000-0003-1419-1306, Universidade Nova de Lisboa), Manuel Gonçalves‐Pereira (CEDOC, Nova Medical School, Faculdade de Ciências Médicas Universidade Nova de Lisboa Lisbon Portugal), Elisa Portolani (0000-0002-8528-1483, Centro San Giovanni di Dio Fatebenefratelli), Daniel Portolani (IRCCS Istituto Centro San Giovanni di Dio Fatebenefratelli Brescia Italy), Orazio Zanetti (0000-0002-5408-0048, IRCCS Istituto Centro San Giovanni di Dio Fatebenefratelli Brescia Italy), Marjolein De Vugt (0000-0002-2113-4134, Transnational University Limburg, corresponding author)
Year2019
Volume27
Issue5
Pagese814-e823
Publication date2019-07-10
Peer ReviewedYes
Open AccessYes
TypeARTICLE
VenueHealth & Social Care in the Community (JOURNAL)
Journal identifiersISSN: 0966-0410 • E-ISSN: 1365-2524
PublisherWiley (PUBLISHER • GB)
DOI10.1111/hsc.12804
PMID31293018
OpenAlexW2959392380
LanguageEN
Citations received7
References cited16

This paper reports on qualitative data from the Actifcare study investigating experiences, attitudes, barriers and facilitators concerning access to and use of formal care. A total of 85 semi-structured in-depth interviews were conducted in eight European countries. Results were analysed with a deductive content analysis, first within country and then integrated in a cross-national analysis. Overall, analysis of the in-depth interviews revealed two major themes with five subcategories. The results can be summarised in an optimal pathway for access to dementia care. This pathway includes fixed factors such as disease-related factors and system-related factors. In addition there are personal factors that are subject to change such as attitudes towards care. An important finding consisted of the necessity of having sufficient information about the disease and available care and having a key contact person to guide you through the process of finding suitable care while monitoring your needs. In addition, it is important to involve your social network as they can take on care-giving tasks. It is helpful to have a diagnosis (in most countries). Concerning decision-making, the person closest to the person with dementia is in the majority of cases the one who makes the ultimate decision to access and use services and he/she should therefore be supported in this process. These results provide insight into the factors that influence the pathway to formal care use and help professionals to enhance access to formal dementia care by focusing on factors that can be modified

Dementia · Pathology · Qualitative research · Social science · Sociology · Aging, Elder Care, and Social Issues · Geriatric Care and Nursing Homes · Intergenerational Family Dynamics and Caregiving · Medicine · Psychology

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Unique citing works7
Citations per year1,4
Citation span2021 - 2025 (5)
Citation velocityrecent
Highly citedNo
Citation typesNeutral: 7
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