Crossing the Line – second workshop

Last week the second in-person workshop took place as part of the Crossing the Line project which is looking to develop resources to support family carers providing personal care to a person living with dementia. The first workshop in January was such a great day with lots of input and insight, and the second workshop did not disappoint either.

Professor Tracey Williamson welcomed everyone to the event before inviting Roy Dibble, one of our experts by experience, to talk to the group. Roy set the scene for the day by sharing his story of caring for his wife Ros who is living with Posterior Cortical Atrophy. It was enlightening to hear some of the challenges Roy faced, not just in terms of providing personal care, but also changing dynamics within his relationship with Ros and taking on other responsibilities within the home. We also had a lovely chance to hear about Ros and some of the amazing things she achieved in her life, reminding us of the person behind the dementia.

Following Roy, Dr Shirley Evans provided a brief overview of the Crossing the Line project as a reminder for people who weren’t able to attend the previous workshop, before handing over to Thomas Morton to provide more information about some of the analysis that’s been carried out so far on survey and interview data. As the quantitative survey results had been covered to some extent in the first workshop Thomas just highlighted a few headline results, such as receiving responses from right across the UK.

Thomas also talked about Interpretative Phenomenological Analysis (IPA, see the image below), a type of in-depth analysis being used with four interview transcripts and thematic analysis which is being applied across all 28 transcripts. This led nicely into a group activity (it’s almost like we planned it!!) looking at the emerging themes. Each table was encouraged to comment on whether the themes – and the language used – made sense and resonated with their experiences, and to suggest how to describe each theme.

After a brief break, Emeritus Professor Dawn Brooker MBE ran a session focusing on the ‘Really Handy Carers Handbook’ which is currently being developed. The handbook has come a long way since the last workshop, mainly thanks to input from our workshop attendees who have been involved in writing some of the content. It is anticipated that the handbook will have three main sections:

1. Setting the scene
2. A-Z of general issues that impact on personal care in dementia
3. Specific areas of personal care

A group activity looked at some of the existing content from sections 2 and 3 to get feedback on it, help rewrite things that don’t make sense, and identify areas that are missing. It also provided and opportunity to invite volunteers to write any remaining sections.

Kicking off the afternoon session was one of our PhD students Diane Bushell who shared her experiences of providing personal care for her mum, with a particular focus on various aspects of going to the loo. Di offered lots of great insight and useful suggestions and strategies about what helped her and her mum, and got everyone thinking about some of the challenges people encounter.

This fed into a group activity where one of the handbook topics being considered from section 3 was help with toilet activities. There were lots of good discussions going on and some great feedback to help us further develop the handbook with real, practical advice.

The workshop concluded with Tracey looking at our priorities for developing resources before the end of the project, getting the group to vote on what format(s) we should focus on initially (leaflets, video clips and web pages were the winners). We also had some great offers to help us test those resources and get feedback on them before they are finalised.

Thank you to everyone for being part of the workshop and sharing your thoughts and experiences with us so generously. There’s one more face to face workshop planned for May, and we’ve also held two shorter online sessions for people who were unable to attend in person.

Full steam ahead until the end of the project!

Connect with ADS on twitter @DementiaStudies and on Facebook @adsuow 

We’re also on Instagram, Threads and LinkedIn so have a look and find us there too. 

Crossing the Line workshop

On 29^th January we brought together around 20 people to take part in the first of three Crossing the Line co-production workshops to help us translate our study findings into free resources for family carers and professionals. Following a welcome from Professor Tracey Williamson we had an introduction to the Crossing the Line project from Sue Briggs, a PPI (Patient and Public Involvement) representative who is also an expert by experience. Sue very generously shared her experience of caring for her husband and why being involved in the project was important to her. It was a powerful way to start the day and highlighted some of the issues that we would go on to discuss throughout the workshop, as well as the importance of the project itself.

For those who may not know, the Crossing the Line project aims to gain a deep understanding of the experiences of family carers relating to their provision of personal care to people living with dementia. Dr Shirley Evans helped to set the scene for the day by reminding the group of the aims of the project and how the research had been progressing.

Sue and Shirley presenting

Next up, Thomas Morton and Faith Frost gave an overview of the findings so far, based on nearly 300 survey responses and 28 interviews with family carers. The amount, and depth, of the information gathered through these methods was incredible and has given the project team a lot to explore and investigate. One interesting point to note from the initial findings was that carers have no time and energy to seek out help or information, let alone engage with it, which is concerning as the onus is often on carers to be proactive rather than support being offered. This was a key point for the research team to take on board as it will influence the project outputs and the need to make them accessible, practical and easy to use.

Going through some of the emerging themes initiated some good discussions within the group, helping us to capture additional perspectives and points to feed into the findings. It was also a useful way to get us all on the same page and starting to think about some of the challenges – and also positives – arising from providing personal care. Some of the overarching areas being considered included:

• Types of personal care
• How prepared people felt to provide personal care
• Strategies to help do personal care
• The emotional toll and coping
• Quality of support from care services

To think about the findings in more detail the group split into separate tables, where everyone had the space to reflect on and add to what had been presented so far. Judging by the amount of conversation that took place, the findings struck a chord with the group.

Faith and Thomas

Following a break for lunch, Emeritus Professor Dawn Brooker MBE led a session to consider how the research can get the findings into practice and actually make a difference to carers and the people they support. Two main areas to think about were the content and the format of possible resources, so these were discussed separately.

First up, content. Using a draft document as a starting point, table discussions helped to clarify the sorts of topics that need to be covered in the resources and in what style, for example the tone and language used. It looks like there won’t be any shying away from tricky topics!

Dawn leading group activities

After some great discussion it was time to focus on the format of the resources for different audiences. It was clear that in order to make a difference any resources need to be easily accessible and available to as many people as possible. Keeping the resources simple, practical and in both web-based and paper-based format was key, as was exploring avenues for dissemination such as through professionals, via organisation websites, through local carer groups, and via social media. With that in mind, if you would like us to let you know how to access the resources (when they’re finished, obviously), please provide some contact details in this short expression of interest form.

Professor Tracey Williamson brought the day to a close by thanking everyone for their time and input to a hugely successful day. There is a wealth of information and ideas for the project team to go through and incorporate into the next stage, before we start planning for the next workshop!

Connect with ADS on twitter @DementiaStudies and on Facebook @adsuow 

We’re also on Instagram, Threads and LinkedIn so have a look and find us there too. 

UK Dementia Congress 2023

A few years ago we wrote a blog about being at UK Dementia Congress (UKDC) from the start to the finish, and this year’s event in Birmingham was similar in that we were presenting from the opening address to the final session. Here’s a brief overview of what we got up to. We didn’t manage to get photos of everything, but hopefully you’ll get a flavour of the event. If you would like more information about any of our presentations or projects, please feel free to get in touch with us on social media or by email (dementia@worc.ac.uk). You can also find our more about our presenters by clicking on their names to go to their staff profiles on our website.

To kick things off, Dr Shirley Evans made the opening address of UKDC, saying how proud the Association for Dementia Studies (ADS) was to be Academic Partner of the event and giving some of our highlights from the past year. She then introduced two of our PhD students who talked briefly about their studies:

• Exploring stigma towards people living with dementia in Extra Care Housing – John Bosco Tumuhairwe
• Exploring re-partnered couples affected by dementia – Jen Edgecombe

Shirley welcoming people to UKDC

Crossing the Line – September update

Our ‘Crossing the Line’ project on support for family carers providing personal care for people with dementia is forging ahead, and held its latest meeting with experts by experience in mid-September. The meeting provided an overview of progress on the project to date, before looking at what is left to do and what the next steps are. As a reminder of what the project is about, its aim and research questions are shown below.

Crossing the Line project update

It’s been a few weeks since the last blog about our Crossing the Line project, so we thought it was about time to give you an update.

We have now reached nearly 200 responses to our survey of family carer experiences of providing personal care for a family member with dementia. Personal care includes a variety of different activities, such as helping with going to the toilet, dealing with any incontinence problems, washing, bathing, getting dressed and undressed, mouth care, shaving, hair care, foot and nail care.  

A huge thank you to those who have requested, shared and handed out the survey so far, and particularly to those of you who have taken the time to complete the survey!  
The survey is ongoing as we are still looking for additional responses, though we have already had some very detailed and insightful feedback from participants, which has helped us to refine the interview guide.

Get involved!

At the Association for Dementia Studies (ADS) we often have work underway where we need input from different groups. When those groups are ones we’re directly working with on a research project reaching them is easier, but when they are from the wider general public it can be a bit more tricky. Although we try to promote our various surveys via different routes including social media, they can sometimes get a bit lost so we thought we’d use this blog post to highlight three current surveys and bring them to your attention.

Crossing the Line

In early June we launched our Crossing the Line survey which aims to explore the experiences of family carers who provide personal care for a person with dementia. As mentioned in a previous blog post the survey is open to anyone who is a family carer with current or previous experience (within the past ten years) of providing personal care for someone with dementia. If that’s you and you’d like to get involved, you can complete the survey online using this link – link to survey.

The survey is also available in Welsh or you can request paper copies by contacting p.finlay@worc.ac.uk

XTL PPI – Co-production with experts by experience

We quite like an acronym here at the Association for Dementia Studies (ADS), but even we felt that XTL PPI might take some explaining! First off, XTL is how we sometimes refer to our new ‘Crossing the Line’ research project which is looking at the experiences of family carers relating to their provision of personal care to people living with dementia. XTL is more of an internal form of shorthand than something we would use in external communication, so you probably won’t see or hear it too often.

PPI, as mentioned in last week’s blog stands for patient and public involvement and is where we engage with people who have lived experience of our research topic to make sure we’re looking at the right things that will hopefully make a difference. The project has a strong element of co-production embedded within it to make sure that we are doing everything we can to make the project inclusive and considered, through informed advice. The group involved in making this happen is called our experts by experience group, and they are brilliant!

Crossing the line – survey launch

Understanding family carers’ experiences of providing personal care for someone living with dementia

We are delighted that the latest phase of our ‘Crossing the line’ study is now underway. The project, which is funded by the National Institute for Health and Care Research, will explore the experiences of family carers who provide personal care for a person with dementia.

Personal care can include a variety of activities, such as helping someone with going to the toilet, dealing with incontinence problems, washing, having a shower or bath, getting dressed and undressed, cleaning teeth, shaving, washing and brushing hair, foot care and looking after fingernails and toenails.