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Issue 2 - October 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 researcher who is involved in remote recruitment and data collection, discuss our experiences of working remotely, Public and Patient Involvement (PPI) activities and events our team have been involved in.
Researcher Experience
Hello, my name is Saqba and I am one of the researchers working on the DPACT study. I am mainly involved in recruiting and interviewing people with dementia and their carers. Over the past few months, we (the DPACT team) have been busy adapting our research processes to include remote working to ensure the safety of staff and participants.
It has been a challenging time, yet, a great opportunity to learn. We have now commenced remote recruitment and data collection which has meant we have been able to engage with people with dementia and their carers (a very rewarding part of the study). I’m looking forward to continuing with this.”
Patient and Public involvement (PPI)

We regularly consult with people with dementia (including those with young onset dementia), carers and former carers as part of our Patient and Public Involvement (PPI) work across the South West and North West of England. 

PPI is about ensuring that we consider the needs of people affected by dementia in the research process. Examples of areas where we have benefitted from this involvement include: developing our recruitment approach, developing the D-PACT support worker role, ensuring our research materials are accessible and acceptable to people living with dementia and deciding which outcome measures to use. 
Continuing our PPI work during COVID-19 has been challenging, but we have held regular meetings, via zoom, with those who have felt comfortable to get involved in this way. During this period, the PPI groups have worked with us to:

•    Develop remote methods of recruitment
•    Design an explanation sheet of the D-PACT intervention in an accessible format. 
•    Provide insights and feedback on a new chapter for our practice manual: ‘Anticipatory Care Planning’
•    Appreciate challenges and opportunities that remote intervention delivery can bring
•    Build our knowledge of the specific support needs of groups such as younger people affected by dementia and those also living with a sensory impairment

The most recent South West meeting with a couple from our Young onset PPI group took place in-person, at a Plymouth memory café. It was fantastic to hear, over coffee and cake, of the efforts they and their friends have been making to keep socially connected and continue meaningful activities during COVID-19.
Greater Manchester has faced strict lockdown restrictions and so the North West team met with Celia Toole from Sight and Mind CIC virtually over Zoom. Celia advised us how to support people living with a sensory impairment condition during remote interviews. Insights from these meetings will contribute to our development of a remotely delivered version of our intervention. The young onset group and other PPI groups provide us with a window into people’s unique lived experiences. Without their contributions, the D-PACT intervention would not be as meaningful and relevant to people we intend will benefit. 
We are always looking to expand our PPI groups in the South West and North West area. In particular, people with dementia have become less represented over time. 

We are currently exploring opportunities for enhancing involvement from less represented groups in these meetings. If you know someone who might be interested in getting involved, please contact Sarah Griffiths (South West): sarah.griffiths-15@plymouth.ac.uk or Rebecca Beresford (North West): rebecca.beresford@
manchester.ac.uk
Question and Answer
 
In our last newsletter, we asked if anyone had any questions and the research team will answer these. Below are questions and answers from the research team.

Question: We often find that support is provided to people within certain age brackets, and if you fall in between those there is limited support.
Will the D-PACT support worker offer support to all, irrespective of their age?
Answer: Yes  - the aim is that the support worker will be supporting people of all ages with a diagnosis of dementia or significant memory difficulties. Their role is to support the carer as much as the person with the diagnosis.
 
Question: When we attend social groups for people with dementia, sometimes the activities provided are not suitable or interesting. Can the D-PACT support worker help with that?
Answer: The D-PACT support worker will have knowledge of a wide range of local community groups and services as well as up-to-date knowledge about what is running remotely due to Covid19. The role involves taking time to get to know individuals and finding out what is interesting and important to them (rather than taking a ‘one size fits all’ approach). Because of this, the support worker will be able to suggest activities that best suit the person. This might not mean activities that are badged as dementia-friendly. It might mean looking at what support can be put in place for people to attend a wide range of groups OR it might mean connecting up people with similar interests for conversations (in-person or remote).
 
If you have any questions regarding the study, please email us and we will answer these in the next newsletter.

Updates

Ian Sherriff, Academic Partnership Lead for Dementia, has been involved in a project with the National Association of Local Councils (NALC). This project surveyed 10,000 local (parish and town) councils to establish what steps they are taking to support people with dementia with the aim of developing a guide that includes recommendations to provide better help. 

Ian Sherriff met the Prime Minister Boris Johnson in September in the garden of number 10. The guide was presented to the Prime Minister and he was asked for his backing to help local councils become more ‘dementia friendly’. Boris Johnson agreed to write a letter of support of the guide and also launch the guide at a press meeting along with Ian Sherriff and NALC members. 

Read more about this by clicking here.
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.