Dr Marie Poole is a Research Associate at Newcastle University. She has been working with a team of researchers to improve end of life care for people with dementia and their families, through the project: SEED Newcastle University. She tweets @mariepoole77
In March, I wrote about the launch of a new, free online course to support carers of people with advancing dementia.
Our aim was that taking part in this course would help carers to feel more prepared, confident and supported to understand and manage life as dementia progresses. In our first run, almost two and a half thousand people from over 100 countries joined the course, with a large proportion of our learners engaging with the course and each other through posting interactive comments on all steps of the course.
This interactive element created a space for carers to reflect on the course material in relation to their own experiences, and to share their responses and feelings with each other. It has been amazing to be involved with our learners posting comments every step of the course. Whilst this has brought new insights into our research – from a national and international perspective - what has really stood out was the creation of a fantastic network of information and support for each other. The course has enabled a diverse range of family carers, health and social care professionals and people interested in learning more about dementia care to connect and share their experiences, feelings and ask questions.
With the launch of Carers Week, it is important that we recognise that carers commonly feel isolated, lonely, poorly understood and undervalued. Week 3 of the course focused on helping carers to consider and meet their own support needs.
Importantly, learners commented that the course provided a safe space to share thoughts they perhaps couldn’t share with the person they support or others in their family and that they valued the support of the other learners who could relate to their experiences.
Through this supportive international community, learners have been open and candid - posting some of their deepest fears and concerns and also positive experiences. Sympathetic responses to situations have helped some learners to recognise that they are not alone and that others have also encountered similar situations. They haven’t been afraid to ask questions of other learners and the research team – for example, do other people feel the same; or to clarify their understanding.
As well as providing a friendly ear, people have also offered advice to each other – sharing hints and tips based on their own experiences - for example recommending local services; sharing links to websites which they have found useful; but I think most importantly, offered encouragement to each other.
People have told us that they now feel able to face some of the difficulties they have faced. So finding out a bit more information and talking about issues with others has helped them to undertake these difficult challenges. An example of this is learners who had not felt comfortable making future plans. Some have described how they now feel confident to try; using approaches suggested by the team and learners alongside the documents from the course.
I think it’s great that researchers and carers can work together to prepare carers to understand and cope with advancing dementia. We can tell people about what they might expect to happen, give information and encourage people to seek support. However; I think it is the real-life experiences which learners have shared, which have really struck a chord with everyone.
I am delighted that the course will run again in July 2019 and hope that the learners will again establish a supportive community for carers. You can sign up now to register your interest Dementia Care: Living Well as Dementia Progresses.