Enable-dem: learning communities to speed up innovations in dementia care
''We need to look at dementia differently," says Simone de Bruin, professor of Living Well with Dementia, when she talks about the NWO project Enable-dem. "People often have only negative associations with dementia. And of course, we have to be mindful of all the challenges that dementia brings besides grief and loss. But this is not the whole story. Our research group doesn’t want to dismiss people with dementia as a group that is no longer capable of doing anything, that can no longer indicate what's important to them. Our approach is: what is still possible? This project includes everyone dealing with dementia now or later on in this vision: from professionals to informal carers. They play an indispensable role in creating a living environment that enables a good life with dementia. Through learning communities, we want to help them to actually do this."
"More focus on and effort into support for older people with dementia, less on medication," said Conny Helder, Minister for Long-term Care and Sport, earlier this month. This confirms the trend within dementia care in which, besides purely medical and functional care, there is an increasing focus on the social and psychological well-being of people with dementia. Professor Simone de Bruin calls it a shift from a medical-somatic model of care - with a focus mainly on physical care, general daily living activities and safety - to a more psychosocial model, which incorporates autonomy, well-being, dignity, inclusion, meaning, participation and welfare. "This is important because in the West we are increasingly facing an ageing population that’s growing older and older. And this also means that the group of people with dementia is expected to increase. In the Netherlands from about 290,000 to 520,000 in 2040."
A shift that has (yet) to take hold in practice
So the question of how to deal with this is becoming more pressing. What is good care and how do you organize it? And what is living well with dementia anyway? If you also take into account that more and more people with dementia are living at home for longer periods of time and that there is a serious risk of shortages among care and welfare staff, it is understandable that both care and welfare professionals and informal carers need to be (even better) included in all these developments. Especially if you also take into account the fact that we will increasingly have to deal with cultural differences in the near future among the group of people with dementia. Simone de Bruin: "However, despite the increasing focus on autonomy and well-being in dementia care, we see that in daily practice the more medical-somatic model is still dominant. This is partly due to insufficient learning and development opportunities and partly to lack of time and space for more innovations and (even) more mutual knowledge exchange."
Creating inclusive care
Also, according to the professor, when creating living environments that make it possible to live well with dementia at home, the perspective of people with dementia themselves is still too often 'forgotten'. She also says that the fact that these people are seen as individuals who can no longer make their own decisions, participate in society or have opinions, explains why they themselves have too little say in designing good care and living environments. And this applies even more to people with a lower socio-economic status, a migration background or people in vulnerable positions. Resources for living well with dementia, such as informal care or technological aids, are therefore at risk of being disproportionately distributed, resulting in a dichotomy in dementia care. But the needs of informal carers also need to be addressed even more strongly, according to Professor Simone de Bruin. What do they need to properly combine work, informal care and private life, without the risk of breaking down under the burden of their care responsibilities?
Learning communities as innovation drivers
These are questions you cannot answer on your own, neither as a carer, nor as a care or welfare professional, nor even as a team or organization. In learning communities, all these stakeholders come together to address the issues raised from their various perspectives. Learning communities enable people with dementia and informal carers to have their vision of living well with dementia included; social partners, organizations, and policymakers can improve and innovate their own services and care and welfare provision. And it offers care and welfare professionals the opportunity to constantly learn with and from each other, to keep developing and to keep up with all the recent developments and insights in dementia care. Because many of them indicate that they are not yet sufficiently facilitated in this. Education, in turn, can incorporate insights into education, because here too, curricula often lack focus on how to design, organize and facilitate a good life with dementia.
Research on four existing learning communities
With a grant from the Dutch Research Council (NWO), the research group Living Well With Dementia(opens in new tab) will therefore conduct research in the context of Learning communities as innovation accelators on four existing learning communities in the field of dementia care: Living Well with Dementia Zwolle, Dementievriendelijk Meppel, Expertise Centre Dementia & Technology Eindhoven and DementieNet Nijmegen. The aim of this research is to support and connect these communities in order to share knowledge together, but also to find out how such multi-stakeholder learning communities function at all. How do they contribute to lifelong learning and more innovation? How do you set them up? And how can you use them sustainably instead of more project-based – as is still often the case today? To answer these questions, the professorship joins forces with the research group Lifelong Development(opens in new tab) of Professor Menno Vos.
Enable-dem and them!
Other educational partners in the Enable-dem project are Eindhoven University of Technology, Leiden University of Applied Sciences, Radboudumc and Utrecht University. In addition, the consortium consists of many partners from the professional field.* Together, they want to 'enable' people with dementia to live well, with everyone around them knowing how to support this. Because although the project is called Enable-dem - which refers to helping people with dementia living well - you could also, Professor De Bruin says, give it the title Enable-them, which in turn refers to helping professionals and informal carers better help people with dementia. How exactly the consortium will do that, we will keep you posted on that over the next five years!
*Professional-field partners in the consortium include Alzheimer Nederland; Alzheimer Nederland, Drenthe area; Alzheimer Nederland, IJssel-Vechtstromen area; Article 25 Foundation; Beleef Dementie bv; Driezorg; Ideon; Netwerk 100; Netwerk Dementie Drenthe; Stichting Into D’mentia; WijZ; and Zonnehuisgroep IJssel-Vecht. In addition to several other care and welfare organizations from the various learning communities.