From Amsterdam to Worcester, a dive into research on people with dementia and their family carers in the UK – part 3

Hi again, for the last time. My time as a research fellow at the Association for Dementia Studies (ADS) is over and I would like to reflect on some of my experiences. To see what my goals were and my reflections when I was about halfway through, read my first and second blog posts.

First of all, what I noticed was that the ADS is a really active research group. A lot is going on, in research and various events. For example, during my time here I went to a Dementia Friendly workshop, where I learned more about environments and their influence on people living with dementia; I attended the HDRC Annual Knowledge and Learning Exchange Event where I heard about a lot of interesting developments in the world of technology in relation to dementia care and I was a part of the family care symposium where the 10th year anniversary of ADS was celebrated. And these do not even include the various projects, workshops and external events that took place while I was here. I learned a lot from my new colleagues here at ADS and I am forever grateful to them for making this fellowship a great success.

In particular, Tracey Williamson, Dementia Carers Count Professor of Family Care in Dementia, has been really helpful to me as facilitator of this fellowship. Our regular meetings were inspirational and she will be visiting my research group in the Netherlands to further discuss our plans to collaborate in the future. I am really impressed with her knowledge and positive and important contribution to improving research and care for family carers of people with dementia.

My particular interest during this fellowship was the support of family carers of people with dementia. During my stay I met with a couple of family carers who had a relative with dementia in different phases. Some of the people with dementia were still living at home and others resided in a care home. The experiences of the family carers were similar. Support for people with dementia and their family carers after the diagnosis can be better! Support is experienced as not joined-up and carers often do not know where to find support and what type of support is available to them. I heard one family carer say the following when I was at the Alzheimer’s Society Annual Conference: “People have the right to be supported, from the cradle to the grave”. And I thought that was a real powerful statement. Now it seems that the type and amount of support family carers receive depends on their personal contacts and pro-activeness. This is something that can be improved and the same is happening in the Netherlands. There we see that support is not provided until problems start to accumulate and available support is not focused on continuation of the life of people with dementia and their family carers and the emotional impact of the diagnosis.

I am very interested in the experiences of family carers of people with dementia. We know that caring for a person with dementia can be demanding and stressful. But more and more we hear about the other sides of caring too. For example, I spoke to an ex-family carer on a listening event to inform Dementia Carers Count on their research plans, who said: “I wouldn’t want to have missed the experience”. He told me that although he faced many challenges, he also learned a lot from caring for his wife with dementia. I think it might be helpful for researchers and professionals to focus more on this more positive side of caregiving. Helping people see the positive sides of their situation, helping them to build confidence that they can deal with challenges and supporting them in living their life as they want to. Of course without denying the challenges that they face.

What I have learned is that the UK and the Netherlands face the same challenges in supporting people with dementia and their family carers. I also realize that a lot of work has been done to improve care but that we still have a lot to do too. This fellowship has helped me broaden my view and it has led to interesting opportunities for our research groups to work together in the future. I am a little sad to leave my new colleagues behind, but feel enthusiastic about our future collaboration. Besides writing these blogs about my experiences, I am planning to writing up my knowledge exchange experience for publication.

If you have any questions, don’t hesitate to contact me at, Marleen Prins.

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