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Carers’ experiences of timely access to and use of dementia care services in eight European countries

Published online by Cambridge University Press:  16 September 2019

Hannah Jelley ,
Liselot Kerpershoek ,
Frans Verhey ,
Claire Wolfs ,
Marjolein de Vugt ,
Anja Bieber ,
Astrid Stephan ,
Gabriele Meyer ,
Mona Michelet  and
Geir Selbaek
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Hannah Jelley*
Affiliation:
Dementia Services Development Centre Wales, Bangor University, Bangor, UK
Liselot Kerpershoek
Affiliation:
Alzheimer Centre Limburg, Maastricht University, Maastricht, The Netherlands
Frans Verhey
Affiliation:
Alzheimer Centre Limburg, Maastricht University, Maastricht, The Netherlands
Claire Wolfs
Affiliation:
Alzheimer Centre Limburg, Maastricht University, Maastricht, The Netherlands
Marjolein de Vugt
Affiliation:
Alzheimer Centre Limburg, Maastricht University, Maastricht, The Netherlands
Anja Bieber
Affiliation:
Institute for Health Care and Nursing Science, Medical Faculty, Martin Luther University Halle-Wittenberg, Halle, Germany
Astrid Stephan
Affiliation:
Institute for Health Care and Nursing Science, Medical Faculty, Martin Luther University Halle-Wittenberg, Halle, Germany
Gabriele Meyer
Affiliation:
Institute for Health Care and Nursing Science, Medical Faculty, Martin Luther University Halle-Wittenberg, Halle, Germany
Mona Michelet
Affiliation:
Norwegian National Advisory Unit on Ageing and Health, Vestfold Hospital Trust, Tonsberg, Norway Faculty of Medicine, University of Oslo, Oslo, Norway Department of Geriatric Medicine, Oslo University Hospital, OsloNorway
Geir Selbaek
Affiliation:
Norwegian National Advisory Unit on Ageing and Health, Vestfold Hospital Trust, Tonsberg, Norway Faculty of Medicine, University of Oslo, Oslo, Norway Centre for Old Age Psychiatric Research, Innlandet Hospital Trust, Ottestad, Norway
Britt-Marie Sjölund
Affiliation:
Department of Neurobiology, Care Sciences and Society, Karolinska Institutet, Stockholm, Sweden Department of Health and Caring Services, University of Gävle, Gävle, Sweden
Anders Sköldunger
Affiliation:
Department of Neurobiology, Care Sciences and Society, Karolinska Institutet, Stockholm, Sweden
Louise Hopper
Affiliation:
School of Nursing and Human Sciences, Dublin City University, Dublin, Ireland
Kate Irving
Affiliation:
School of Nursing and Human Sciences, Dublin City University, Dublin, Ireland
Maria Marques
Affiliation:
CEDOC, NOVA Medical School, Faculdade de Ciências Médicas, Universidade Nova de Lisboa, Lisbon, Portugal
Maria Conceição Balsinha
Affiliation:
CEDOC, NOVA Medical School, Faculdade de Ciências Médicas, Universidade Nova de Lisboa, Lisbon, Portugal USF Marginal, São João do Estoril, Portugal
Manuel Gonçalves-Pereira
Affiliation:
CEDOC, NOVA Medical School, Faculdade de Ciências Médicas, Universidade Nova de Lisboa, Lisbon, Portugal
Daniel Michael Portolani
Affiliation:
Alzheimer Research Unit, Memory Clinic, IRCCS Istituto Centro San Giovanni di Dio Fatebenefratelli, Brescia, Italy
Orazio Zanetti
Affiliation:
Alzheimer Research Unit, Memory Clinic, IRCCS Istituto Centro San Giovanni di Dio Fatebenefratelli, Brescia, Italy
Bob Woods
Affiliation:
Dementia Services Development Centre Wales, Bangor University, Bangor, UK
*
*Corresponding author. Email: h.jelley@bangor.ac.uk
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Abstract

Timely access to care services is crucial to support people with dementia and their family carers to live well. Carers of people with dementia (N = 390), recruited from eight countries, completed semi-structured interviews about their experiences of either accessing or not using formal care services over a 12-month period in the Access to Timely Formal Care (Actifcare) study. Participant responses were summarised using content analysis, categorised into clusters and frequencies were calculated. Less than half of the participants (42.3%) reported service use. Of those using services, 72.8 per cent reported timely access and of those not using services 67.2 per cent were satisfied with this situation. However, substantial minorities either reported access at the wrong time (27.2%), or feeling dissatisfied or mixed feelings about not accessing services (32.8%). Reasons for not using services included use not necessary yet, the carer provided support or refusal. Reasons given for using services included changes in the condition of the person with dementia, the service's ability to meet individual needs, not coping or the opportunity to access services arose. Facilitators and barriers to service use included whether participants experienced supportive professionals, the speed of the process, whether the general practitioner was helpful, participant's own proactive attitude and the quality of information received. To achieve timely support, simplified pathways to use of formal care services are needed.

Keywords

carersdementiaservice accessformal careEurope
Type
Article
Information
Ageing & Society , Volume 41 , Issue 2 , February 2021 , pp. 403 - 420
Copyright
Copyright © Cambridge University Press 2019

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