From Amsterdam to Worcester, a dive into research on people with dementia and their family carers in the UK – part 2

Hi again. In my previous blog I described who I am and why I am currently working for three months with the Association for Dementia Studies at the University of Worcester. I have been here for almost two months already and I would like to share with you some things that I noticed.

But first, I would like to start by mentioning how everybody has made me feel very welcome. Not only my colleagues at the University, but also all the people I met during my visits to care homes, at workshops and courses. That has been a good basis for making me feel comfortable in asking questions and learning about research on and support for people with dementia and their family carers in the UK.

To put things in perspective, I would like to compare some figures about dementia between the UK and the Netherlands.

(Sources: https://www.alzheimer-nederland.nl/factsheet-cijfers-en-feiten-over-dementie; https://www.alzheimer-nederland.nl/dementiemonitor; https://www.alzheimers.org.uk/about-us/news-and-media/facts-media; https://www.dementiastatistics.org/statistics/care-services/; https://www.scie.org.uk/dementia/symptoms/diagnosis/getting-a-diagnosis.asp; https://www.alzheimersresearchuk.org/wp-content/uploads/2015/12/Dementia-in-the-Family-The-impact-on-carers.pdf)

As you can see, the figures in the UK are quite comparable to those in the Netherlands. In both countries, there is a growing number of people living with dementia. Therefore, it is recognised that there is a need for adequate support for people living with dementia and their family carers, whether the person with dementia lives at home or in residential care.

An example of support for people with dementia that is individualized and focuses on their needs is Namaste Care. In April, I went to two care homes where Namaste Care is being implemented and it became clear that this way of caring for people with dementia is very loving and beneficial for the residents, especially when they are in a later stage of their dementia. I was impressed by this intervention and I am curious about how this is going to develop further. In the Netherlands we see that it is often a challenge to broadly disseminate good practice, but I would hope that in the future, as many residents as possible will benefit from this intervention if that is what they need.

I also visited a Meeting Centre, which supports people with dementia and their family carer. This was a special experience, because at the Meeting Centre, it felt like people belonged to one big family. It was very accessible and everybody – including staff, visitors, family members and volunteers – worked together to have an enjoyable day together. I could see the visitors enjoying themselves, being in a group of likeminded people, everybody knowing each other, doing activities that are inclusive to everybody. Again, I am convinced that this type of support is helpful to people with dementia and their family carers and I am curious about the developments around Meeting Centres in the UK. I went to a Pioneer Workshop with my colleague Shirley Evans and noticed that attendees with different backgrounds were interested in the Meeting Centres concept. I hope this initiative will spread further in the UK.

After having seen both programs, I was quite content, because both run in the Netherlands as well. It is encouraging to see how countries do seem to learn from each other’s experiences.

Besides these two great experiences, I also went to a three-day course of the Dementia Carers Count. This course was specifically for carers of people with dementia living in a care home. There were seven carers and we all stayed in a hotel together for the three days of the course. It was nice to see that the carers realised they were not the only one in this situation and seemed to find comfort with each other. It became clear that the course itself led to many “aha” moments for the carers. Some information was new to them, other things reassured them and prepared them for the future. What proved to be a subject that all carers related to was that they found it difficult to take good care of themselves. Although everybody is advising them to “take time for yourself” and to “take good care of yourself”, it was hard for them to really do that or plan to do that. During the course I saw tears, but there were also laughs and in my experience, the carers got a lot out of this course. I think they learned a new way of looking at their situation which can help them in the rest of their journey.

I got inspired by what I have experienced here so far. The question that remains unanswered for me is how to match these and other types of evidence-based psychosocial support for people with dementia and their family carers to their fluctuating needs. It seems that there are various types of support available, but I am not sure if it always reaches the right people at the right time. I think this happens in the Netherlands as well as in the UK. And I feel motivated to try to improve this in the future!