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. 

Learning Disabilities and Dementia

We’ve got something a bit different for you this week as we’re pleased to say that one of our Postgraduate Certificate students has kindly agreed to share their story with us. Over to you, Saff…

Hi there!

My name is Saff, I’m a Registered Learning Disability Nurse of 14 years, currently working as a Community Learning Disability Nurse for Herefordshire & Worcestershire Health & Care NHS Trust. My job is often referred to among peers as ‘jack of all trades, master of none’! We do get involved with all sorts but sometimes honing our skills in one area of health care can take a back seat when patients on our caseloads always remain the priority and their needs are forever changing.

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

One of our new projects that’s getting underway is ‘Crossing the Line’, which is looking at getting a better understanding of some of the challenges faced by family carers when providing personal care for people living with dementia. The 18-month project has been funded by the National Institute for Health and Care Research (NIHR) and brings together a host of co-applicants and project partners to ensure it reflects a range of different perspectives.

What is personal care?

Personal care can include a variety of different activities such as helping with going to the toilet, washing, bathing, dressing, mouth-care, shaving, haircare, foot and nail-care. Family carers that support people with dementia have reported that the issue of personal care is very important to them, though research has shown that little is known about it in the context of dementia and family care.

Family carers can face challenges adapting to the change in role that providing personal care brings, and this is worsened by lack of skills, know-how, shame and embarrassment. As a person’s dementia progresses, they may be increasingly unaware of their need for help or the impact it has on their family. This in turn can lead to high levels of distress, causing physical and emotional harm both to themselves and their family carer. The challenges around personal care are often a tipping point for the person living with dementia to move into a care home. 

Getting ready for the academic year

With August rapidly disappearing, we’re putting the finishing touches to our Postgraduate Certificate in Person-Centred Dementia Studies modules which will be running from September. They’ve all run before, so it’s mainly a case of making a few tweaks based on student feedback and adding in any new information to keep them current. It’s not too late to enrol if you’re interested in studying with us (or get ahead of the game and get sorted early for a January start!), and don’t forget you can sign up for a single module before making a decision about whether to do the full Postgraduate Certificate. So what can you study?

Starting in September

• MDEM4001 Person-Centred Leadership: The VIPS Approach – Nicola Jacobson-Wright will be leading this module, and this is the mandatory module if you’re doing the full PGCert. On this module Nicola will be focusing on the development of the students’ leadership skills to critically analyse service provision for people living with dementia from the perspective of the person living with dementia, and how they can lead services to work better from this perspective.
• MDEM4004 Supporting People Living with Advanced Dementia – On this module, Mary Bruce will be encouraging students to consider the important aspects of care planning and approaches to support relevant to the care of people living with advanced dementia. Students will consider the utility of identifying and defining advanced dementia and consider the ways in which this impacts upon the person, their family, health and social care professionals and other agencies delivering support.
• MDEM4005 Enabling Environments for People Living with Dementia – Led by Teresa Atkinson, this module will help students understand how opportunities and constraints in any given environment can impact on people with dementia is important to supporting well-being and the citizenship of people living with dementia regardless of where they reside. This module examines the creation of dementia friendly communities, enabling environments in the home and health care settings, as well as the contribution of the person-environment fit to well-being, autonomy and preservation of self and identity.

Everyone brings something to the Meeting Centre

The June webinar was held at a slightly earlier time than normal due to the University of Worcester graduation ceremony for three of our PhD students, but that didn’t stop a good group of us getting together to hear directly from people with dementia and their family carers about their experiences of Meeting Centres.

In her welcome, Professor Dawn Brooker reminded everyone that the Meeting Centre ethos puts members and family carers at their heart, and aims to help them adjust to the changes that dementia brings. When this session was originally planned as part of a face-to-face conference, the intention had been to support people who attend Meeting Centres to involved in person and share their experiences. While current conditions mean that we’d had to do everything online, we still hoped to be able to capture a flavour of that input in this webinar.

The UK Meeting Centre Support Programme has been supported by two key organisations to ensure that the views of people with dementia and family carers are captured and represented in our research. The first organisation is Innovations in Dementia, represented by Damian Murphy, who supports Dory Davies and Dreane Williams to be part of the project’s National Reference Group. As Dreane was not able to be part of the webinar, her thoughts were shared by Damian. The second organisation is Together in Dementia Everyday, represented by Ruth Eley who was sharing the thoughts of family carer Ann Caldwell, while a second carer George Grindlay was part of the webinar.

The webinar took the form of a discussion with questions posed by Dawn, and the following attempts to capture an overview of the points discussed. We highly recommend watching the recording of the session as it’s far more powerful to hear what was said in people’s own words.

Dementia in the family context – a new online option to study with us

As thoughts for many move to Christmas lists and New Year resolutions, you may recall reflections past that made you want to develop personally, push your abilities and expand your knowledge. This has been an extraordinary year for family carers and the effects of the pandemic will be a thread within our upcoming Dementia in the Family Context module starting in January 2021 (closing date November 30^th 2020). If you have an appetite for more than mince pies, why not take a look?

A Conversation with…

A Conversation with…Tracey Williamson, Graham Galloway, Sue Hinds, Hannah Sweeney and Dr Shirley Evans

Empowered Conversations have been organising a series of weekly webinars during lockdown, and the last one before the summer break took place on 22^nd July. In a slightly different format from normal, this webinar comprised Emma Smith from Empowered Conversations chairing a panel of professionals who have been ‘Shifting support for families affected by dementia from face-to-face to virtual support’.

Dementia Carers Count Professor of Family Care in Dementia blog

This week Professor Tracey Williamson has kindly shared her thoughts about her experiences at this time:

In this blog I thought I’d share what a professor gets up to when working from home during a pandemic. The phone has not rung this morning so I am clearly not to be furloughed – am I the only person that had to quickly Google that word last month? Being permitted to carry on working is a blessing as things have never been busier. There are of course unexpected opportunities to assist the COVID-19 pandemic through research, so I have facilitated some hugely useful discussions with others about what research could best help those living with dementia and their families, during this crisis in the immediate term, middle and longer term. Our priority areas embrace two of our strengths relating to person-centred care research and studies with care homes and retirement settings. So bidding is the order of the day today, tomorrow and for the foreseeable few weeks.