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Improving and sustaining positive health of people with dementia and their carers by creating dementia-friendly societies.

Projectomschrijving

Voor mensen met dementie is het belangrijk te blijven participeren in de gemeenschap, gewaardeerd te worden, zich nuttig te maken en te genieten van betekenisvolle activiteiten. Dit is voor zowel mensen met dementie als mantelzorgers vaak moeilijk door geheugenproblemen en de reactie vanuit de omgeving hierop.

Achtergrond

Het dementievriendelijk maken van de omgeving lijkt veelbelovend. In een dementievriendelijke gemeenschap werken burgers, zorg- en welzijnsprofessionals, overheidsmedewerkers, dienstverleners, bedrijven en anderen samen. Zij streven naar een gemeenschap waar iedereen bij hoort, aan kan deelnemen en waarin goed wordt omgegaan met mensen met dementie, aansluitend bij hun behoeften en mogelijkheden.

Doel en aanpak

In dit project is, op basis van literatuur en praktijkervaringen, een handleiding en raamwerk voor dementievriendelijke gemeenschappen ontwikkeld, getest en verspreid.

Meer informatie

Producten

Titel: How do community based dementia friendly initiatives work for people with dementia and their caregivers, and why?
Auteur: Thijssen M, Daniels R, Lexis M, Jansens R, Peeters J, Chadborn N, Nijhuis-van der Sanden M, Kuijer-Siebelink W, Graff M.
Magazine: International Journal of Geriatric Psychiatry
Link: https://doi.org/10.1002/gps.5662

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Samenvatting van de aanvraag

People with dementia (PWD) and their carers experience social stigma and often refrain from social participation. Participation in social activities is part of the new concept of positive health, important for healthy aging, promoted by the World Health Organization and dementia research theme (Deltaplan Dementia). Empowering self-management of PWD and carers is partly effective to enhance social participation, yet, significant improvement might be achieved through adapting social and physical environments and creating Dementia Friendly Societies (DFS) meeting needs of PWD and carers. Studies on working mechanisms and effectiveness of dementia friendly initiatives in societies are however scarce. The aim of the present study is to develop, test and disseminate a framework accompanied with an intervention advice manual to create tailor-made DFS for supporting PWD and carers to participate in social activities and hence enhance related health benefits. Our hypotheses are: 1) the framework with manual is feasible to support local societies to acknowledge the needs and potential of PWD and carers, challenge stigma, create accessible and respectful community activities, businesses, services, practical support, reliable travel options, and easy to navigate environments; 2) the framework with manual is feasible to support local societies to create sustainable DFS with well-connected collaborating agencies, services and social networks to enhance social participation of PWD and carers and to increase related health benefits. The study design consists of a mixed methods approach, a combination of qualitative and quantitative research based on the realist method (including literature search, ethnographic/participatory research, scrutiny of documents and other contemporaneous materials, semi-structured interviews and focus groups) to develop the framework for DFS. Both qualitative and quantitative methods are required to answer the research questions on the feasibility of the framework for creating sustainable DFS. The study comprises three work packages (A, B, and C). Work package A and B use the method of realist review and realist syntheses to investigate what the underlying mechanisms, successful and influencing factors (i.e. barriers and facilitators) of DFS and social participation are concerning the academic and grey literature and experiences of PWD, caregivers, (non) health and welfare stakeholders. Work package A (0-8 months) includes literature search. Work package B (6-23 months) includes ethnographic, participatory research of ongoing initiatives in six DFS. Based on synthesis of the gathered data of work package A and B, a CMO (Context, Mechanisms, and Outcomes) framework will be developed. In work package C (24-48 months), the CMO framework for DFS will be tested on its feasibility for implementation in four DFS pilot regions (i.e. Heerlen, Maasgouw, Wijchen and Nijmegen). Feasibility is based on the opinion of participating stakeholders on the criteria by Bowen et al. acceptability, demand, implementation, practicality, possible effectiveness, and adaptation. Most important is whether PWD and carers experience that initiatives following use of the framework are according their needs and have impact on social participation. Measurements are conducted at the start of the pilot study, after 6 and after 12 months, to evaluate the progress on DFS based on the framework and the outcomes of social participation, health, quality of life of PWD and carers, on the effect of connecting activities, services, agencies and networks and economic outcomes. Based on the feasibility data, the identified facilitators and barriers experienced on the different feasibility topics, an intervention advice manual, including the framework and recommendations for developing sustainable DFS for common practice, will be developed and disseminated through diverse stakeholders and channels. This manual or practical guide, with examples from daily practice, will enable unexperienced communities to develop DFS.

Kenmerken

Projectnummer:
733050844
Looptijd: 100%
Looptijd: 100 %
2017
2023
Onderdeel van programma:
Gerelateerde subsidieronde:
Projectleider en penvoerder:
prof. dr. M.J.L. Graff
Verantwoordelijke organisatie:
Radboud Universitair Medisch Centrum