Interventions to enhance access to and utilization of formal community care services for home dwelling persons with dementia and their informal carers. A scoping review

Abstract

Objectives: Home dwelling people with dementia and their informal carers often do not receive the formal care services they need. This study examined and mapped the research regarding interventions to improve access and use of formal community care services.

Method: This is a scoping review with searches in PubMed, CINAHL, PsychINFO, Medline, Cochrane Database of Systematic Reviews, Social Science Citation index and searches of grey literature in international and national databases. Studies were categorized according to the measure used to enhance access or use.

Results: From international databases, 2833 studies were retrieved, 11 were included. Five studies were included from other sources. In total, 16 studies published between 1989 and 2018 were examined; seven randomized controlled trials, six pretest-posttest studies and three non-randomized controlled studies. Sample sizes varied from 29 to 2682 participants, follow-up from four weeks to four years. Five types of interventions were identified: Case management, monetary support, referral enhancing, awareness & information focused and inpatient focused. Only two studies had access or use of community services as the primary outcome. Fourteen studies, representing all five types of interventions, had positive effects on one or more relevant outcomes. Two interventions had no effect on relevant outcomes.

Conclusion: The included studies varied widely regarding design, type of intervention and outcomes. Based on this, the evidence base for interventions to enhance access to and use of formal community services is judged to be limited. The most studied type of intervention was case management. More research is recommended in this field.

Keywords:

• Dementia
• home dwelling
• access
• community care
• Actifcare

Acknowledgement

The authors wish to thank all experts who participated in the study.

The ActifCare Consortium partners are:

Coordinator: Maastricht University (NL): Frans Verhey, Marjolein de Vugt (scientific coordinators, WP1 leader).

Consortium members: Maastricht University (NL): Marjolein de Vugt, Claire Wolfs, Ron Handels, Liselot Kerpershoek. Martin-Luther University Halle-Wittenberg (DE): Gabriele Meyer (WP2 leader), Astrid Stephan, Anja Bieber, Anja Broda, Gabriele Bartoszek. Bangor University (UK): Bob Woods (WP3 leader), Hannah Jelley. Nottingham University (UK): Martin Orrell. Karolinska Institutet (SE): Anders Wimo (WP4 leader), Anders Sköldunger, Britt-Marie Sjölund. Oslo University Hospital (NO): Knut Engedal, Geir Selbaek (WP5 leader), Mona Michelet, Janne Rosvik, Siren Eriksen. Dublin City University (IE): Kate Irving (WP6 leader), Louise Hopper, Rachael Joyce. CEDOC, Nova Medical School/Faculdade de Ciências Médicas, Universidade Nova de Lisboa (PT): Manuel Gonçalves-Pereira, Maria J. Marques, M. Conceição Balsinha, Ana Machado, on behalf of the Portuguese Actifcare team (FCT-JPNDHC/0001/2012). Alzheimer’s Research Unit-Memory Clinic, IRCCS Centro S. Giovanni di Dio “Fatebenefratelli” (IT): Orazio Zanetti, Elisa Portolani.

Disclosure statement

The authors report no conflict of interest.

Additional information

Funding

This is an EU Joint Programme - Neurodegenerative Disease Research (JPND) project. The project is supported through the following funding organisations under the aegis of JPND - www.jpnd.eu. Germany, Ministry of Education and Research, Ireland, Health research board, Italy, Ministry of Health, the Netherlands, The Netherlands organization for Health Research and Development, Sweden, The Swedish Research Council for Health, Working Life and Welfare, Norway, The Research Council of Norway, Portugal, Foundation for Science and Technology, FCT, United Kingdom, Economic and Social Research Council. The funding body had no influence in the design of the study, nor collection, analysis, and interpretation of data, nor in writing the manuscript.