Hi, my name is Marleen Prins and I will start this blog with introducing myself and carry on with describing how I got to work as a fellow at the Association for Dementia Studies (ADS), what projects I work on in the Netherlands and what my goals are during my stay here.
I am a 29 year-old psychologist and researcher and live in Amsterdam, the Netherlands. I work at the Department on Aging of the Netherlands Institute of Mental Health and Addiction (Trimbos-institute). At the Trimbos-institute, I work on projects regarding the subject that I find the most interesting topic in the world: (support for) people with dementia and their family carers.
In the midst of 2018, my head of department – Bernadette Willemse – and I contacted Dawn Brooker, Director of the ADS at the University of Worcester, because we wanted to propose a knowledge exchange fellowship between our research groups. After a Skype meeting with Dawn, we were very enthusiastic, because the work that both our research groups perform is very similar, for example research on psychosocial support for people with dementia and their family carers and quality of care in care homes. We decided to apply for funding from the Alzheimer’s Society (UK) and the Dutch Alzheimer’s Association called “Alzheimer Nederland”. In January we got the good news that we received the grant.
Of course I was really pleased, because now I would get the chance to look beyond our Dutch borders and learn from our colleagues in the UK about their research on dementia care. In my work in the Netherlands, I mostly focus on two themes: psychosocial support for family carers of people with dementia, and of people living with dementia with behaviours that may challenge.
For example, I worked on a project in which a Virtual Reality experience was developed and evaluated for family carers of people with early stage dementia in order to improve their understanding of dementia and empathy. While watching this 360-degree film, a family carer experiences what it is like to have dementia, because in the film they encounter a couple of day-to-day situations through the eyes of a person with dementia. For example, the family carer experiences what it is like to have trouble making coffee, because they can’t remember how much water to put into the machine and forget to plug it in. The film is accompanied with an e-course in which is reflected on the family carers’ own experiences in relation to the scenes in the film. Pilot test results showed high satisfaction of users and improved empathy, confidence in caring for the person with dementia and positive interactions with the person with dementia.
Another project that I was involved in was in collaboration with Alzheimer Nederland. We developed six short films about learning how to cope with behavioural changes of the person with dementia. These films are made with and for family carers of people with dementia and they are currently free available on the Dutch platform on dementia called dementia.nl. This e-learning focuses on different types of behaviour like aggression and apathy. In every movie, not only experts, but also family carers who have experience with the behaviour, tell about the causes of and possible approaches to deal with the behaviour. In addition to these films, a training for dementia case managers on how to support family carers and people with dementia with behavioural changes living at home has been developed, based on national guidelines that describe how to approach behavioural changes in people with dementia.
In addition, a project that I worked on up until I left for Worcester is the evaluation of the (cost-) effectiveness of the Dutch translation of the SHARE (Support, Health, Activities, Resources, Education) intervention for people with early-stage dementia and their family carers. The intervention is carried out by a healthcare psychologists and consists of five or six sessions wherein skills of the dyad to cope with changes and stressors that might be expected in the future due to the dementia are enhanced.
Finally, I am working on my PhD. The subject is ‘involvement of family carers in care homes for people with dementia’. Data comes from the Living Arrangements for People with Dementia (LAD-)study. In this study, we collect data every two to three years about the quality of care in Dutch care homes. Questions that I try to answer in my thesis are for example: are there changes in involvement of family carers of people with dementia over the years? Are there changes in their feelings of role overload and self-efficacy? What is the relationship between the involvement of family carers and their feelings of role overload and self-efficacy? And what is the relationship between characteristics of care homes (for example providing person-centred and small scale care) and the involvement of family carers. It is important to study the involvement of family carers of people with dementia, because policy in the Netherlands is encouraging family carers to become more and more involved in the care for people living with dementia, at home as well as in care homes. On the other hand, research shows that family carers of people with dementia experience severe burden and stress and remain to do so even if their family member moves into a care home.
My goals during my visit to ADS are to experience (research about) care for people with dementia and their family carers in the UK to the fullest. For example, I will:
- attend a course for family carers, organized by Dementia Carers Count
- analyse some qualitative data in the Namaste Care project
- visit London for the Alzheimer’s Society Annual Conference
- be present at the Housing And Dementia Research Consortium learning exchange event
- work on and help with other projects at ADS
I am very curious about what I will learn about the care for people with dementia and their family carers in the UK in the next few months and I will blog about my experiences some more during my stay. If you have any questions, please contact me at m.prins@worc.ac.uk.
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