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Issue 1 - July 2020
The DPACT study is developing a dementia support worker intervention, based within GP surgeries, for people living with dementia and their carers. The aim of the intervention is to improve the physical and emotional wellbeing, and quality of life of the person with dementia and their carer, by attending to what matters most to them and addressing these issues in a manner they identify as being helpful.
 
The purpose of this newsletter is to share our research experiences and news. In this newsletter, we introduce a Dementia Support Worker working in Devon, highlight the impact Covid-19 has had on our way of working, how we have adapted our processes to facilitate remote working and upcoming activities our team are involved in.
Hi my name is Hayley and I am a Dementia Support Worker in Devon.
I have worked with people with Dementia since I was a teenager (which feels a very long time ago).  I normally work on an in-patient Mental Health ward for Older Adults but now I have had this opportunity of doing a secondment for this amazing study DPACT.  When I first started, we went straight into lockdown so it meant no face to face visits. I have worked remotely from the beginning and this has been very challenging but also very positive.  It is amazing how technology can help those who are shielding or isolating at home. Even though I adore seeing the person with dementia and carers over video, I am really looking forward to seeing them face to face when it is safe to. They have adapted and learnt the new ways, and that shows how wonderful DPACT has been by being able to support these people at home - especially when they do not have much support.”

REmote working

The recent spread of Covid-19 across the UK has resulted in GP practices closing to patients and restricted support from other health and social care services. Lockdown has followed, and people with pre-existing health conditions, including those with dementia, have been shielding in their own homes.
Lockdown restrictions have meant that we have had to adapt our way of working to limit face to face interaction. Researchers now meet regularly via zoom to discuss many aspects of the study.

It has also meant that we have not been able to recruit more participants onto DPACT since March. However, due to the substantial impact lockdown has on people with dementia, we have been working hard to adapt the study, so that it can continue to be delivered remotely (and hence safely) to people who were already receiving the intervention pre-Covid.

Along with our patient and public involvement group and expert reference group, we have been developing innovative ways of recruiting new participants onto the study remotely, which include:
  • developing a guided capacity and consent protocol for researchers. This involves using visual decision aids and easy read summaries to help discussions about consent and allow researchers to judge capacity
  • recording consent verbally during a recorded conversation, rather than asking participants to complete and post hard copies of the form
  • delivering information about the study to potential participants in an audio/video form (as well as in a written format), and
  • holding research meetings with participants via video conferencing. This will allow researchers to observe non-verbal communication as well as allowing use of the ‘share screen’ option when going through the study documents (e.g. consent forms).
We have submitted these changes for an ethical review. We hope to start remote recruitment in the summer. 

We are grateful for the input from everyone involved in DPACT. These insights have helped us develop novel approaches to remote working. We continue to welcome these insights as we learn and develop alternative ways of working, many of which may still be used beyond Covid-19.  We shall report back on further developments as we progress.

Knowledge Exchange Sessions

We have also adapted our intervention to enable remote working. Despite the obvious challenges, this new way of working has produced great opportunities for learning, not only for the period while restrictions to movement remain in place for our participants, but also to inform how the intervention may be delivered post-lockdown. We have started to host a series of remote ‘Knowledge Exchange’ sessions to give researchers, dementia support workers, and supervisors the opportunity to get together, discuss how things are going and share learning.

We held the first of these sessions via Skype on the 2nd June, attended by colleagues from both North-West and South-West sites.  We discussed the practicalities of setting up remote sessions with participants, and how to manage the sometimes differing perspectives of people with dementia and carers/wider family members to ensure all voices are heard. We also talked about how to structure sessions effectively to make the most use of the intervention time, and to provide a safe space to revisit issues. 

Aside from some audio problems when playing video clips (demonstrating wonderfully, if accidentally, some of the joys of remote working), all who attended agreed it was a friendly, useful and informative session. It was particularly useful for researchers to hear about how our support workers are finding resourceful ways to provide support remotely; and support workers to become more familiarised with theoretical aspects underpinning delivery of the intervention.   
Question and Answer
If you have any questions regarding the study, please email us and we will answer these in the next newsletter.

Updates
  • In August 2020, researchers Sarah Griffiths and Lauren Weston will be presenting DPACT early work on developing the support worker intervention at the online ‘Centre for the Advancement of Realist Evaluation and Synthesis (CARES) Realist Methodology Training conference’. Their presentation is entitled: ‘Engaging people living with dementia and field experts in programme theory development: a realist informed approach’.
 
  • The Empowered Conversations group have launched an ‘In Conversation With” virtual series; hosting interactive talks from nationally recognised experts and speakers to bring hearts and minds together and improve outcomes for people living with dementia. Sarah and Hannah have been invited to present at the webinar on “Shifting support for families affected by dementia from face-to-face to online support” in September.Their talk will be on: ‘Insights from a remotely delivered ‘Dementia support worker’ intervention (the DPACT study) and ideas for future research into telecommunication support. Follow this link to register for the event: http://empowered-conversations.co.uk/empowered-conversations-hosts-a-conversation-with/
 
  • Ian Sherriff has been invited  by the British Standards Institution (BSI) to join the UK national standards committee on Ageing Societies. As a member he will contribute towards the shaping of international standardization in this area, with a particular focus on dementia-inclusive and carer-inclusive communities. Ian attended his first meeting with the UK committee in May and has already made a significant contribution by joining international working groups and writing comments on a draft standard, which will form the basis of the UK’s feedback to the International Organization for Standardization (ISO).
     
Meet the Team - South West
Professor Richard Byng - Professor in Primary Care Research, University of Plymouth - Principal Investigator (PI)
Dr Tomasina Oh - Associate Professor - Dementia Care Programme Lead (Research), University of Plymouth
Mr Ian Sheriff, BEM - Academic Partnership Lead for Dementia, University of Plymouth
Dr Sarah Griffiths - Research Fellow in Complex Interventions, University of Plymouth
Dr Hannah Wheat -  Research Fellow in Complex Interventions, University of Plymouth
Dr Leanne Greene - Research Assistant, University of Plymouth
Mrs Alex Gude - Research Assistant, University of Plymouth
Miss Lorna Manger - Research Assistant, University of Plymouth
Dr Lauren Weston - Research Assistant, University of Plymouth
Meet the Team - North West

Dr Paul Clarkson - Senior Lecturer in Social Care, Deputy Director, Social Care and Society, University of Manchester and Senior Fellow, NIHR School for Social Care Research

Ms Caroline Sutcliffe - Research Fellow, University of Manchester

Dr Saqba Batool - Research Assistant, University of Manchester

Mrs Rebecca Beresford - Research Assistant, University of Manchester
This study/project is funded by the National Institute for Health Research (NIHR) Programme Grants for Applied Research (RP-PG-0217-20004). The views expressed are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care.
 






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