D-PACT: Dementia – Person Aligned Care Team

Overview

The Dementia – Person Aligned Care Team (D-PACT) programme is a five-year project, funded by a National Institute for Health Research (NIHR) Programme Grant for Applied Research (PGfAR). Our project aims to develop and evaluate a system for dementia support based in general practice for people living with dementia and their carers. The project is a collaboration between the Universities of Plymouth and Manchester.

Currently, a range of dementia support services and roles exist to address the challenges faced by people with dementia and their carers. These services are often valued, but there are still questions in relation to the most effective type of support and where it is best delivered. Commissioners and providers can be reluctant to invest in services when there is limited evidence to support their effectiveness.

Aims

The D-PACT programme will address this lack of evidence by developing and evaluating a system for dementia support based within general practice that will provide post-diagnosis care for people with dementia and their carers.

They’ve got somebody to go to if they’ve got a support worker. I think it will be handy, they’ve got a named person that they can go to if they’re looking for anything, really. I didn’t know who to go to for anything, I had to find it all out myself… it was draining because you don’t know anything, you don’t know… you’ve got to find it all out yourself.

from an interview with a person living with dementia


… so the support worker’s listening and thinking, okay, what does this individual carer need? What do they need? Not ‘what does every carer need?’ What does THIS person need? Where is the best point that I can direct them to?"

– from an interview with a carer

 

Day-to-day I see people with dementia out with their families and they’re having fun and living a good life. Perhaps people can’t envisage that (at the point of diagnosis), and there might not be anyone supporting them to make that next step back out into the community. So it’s about helping them adjust to the diagnosis and supporting them to get on with their lives again now that they’ve been reframed with a diagnosis of dementia."

– from an interview with an expert in the field of dementia

The Project

D-PACT years 1–2: feasibility

We are currently in the second year of our two-year feasibility phase. During this feasibility stage we have focused on developing a Dementia Support Worker intervention that provides ongoing support to meet the following needs of people with dementia and their carers:

  • Mental health and wellbeing
  • Physical health and wellbeing
  • Support to achieve social goals
  • Improved quality of life.
We are also developing a theory of how the intervention will work by reviewing the literature and talking to experts including, importantly, people with dementia and their carers.

D-PACT years 3–5: main trial

In years three to five, we will run a randomised controlled trial with around 36 practices in two to three UK settings. Practices will be randomised equally between those receiving and those not receiving the intervention. We will measure differences in outcomes such as

  • Quality of life
  • Functioning
  • Carer wellbeing
  • Cost
Throughout the programme, we will study how to ensure such an intervention can be put into practice in the challenging health and social care context – both during the trial and following its completion. This will help us to understand how policy, organisations, training and commissioning can ensure that the results of the research are used. We have brought together people with the right skills and experience, including people with dementia and their carers, to deliver the programme.

Patient and stakeholder involvement at every stage

We have built, and continue to expand, our Patient and Public Involvement (PPI) work across the South West and North West of England, involving people with dementia (including those with young-onset dementia), carers and former carers. Our most recent work on expanding this group aims to ensure that we are seeking a diverse range of opinions. We also meet regularly with an Expert Reference Group (ERG) that comprises local policy makers, managers, practitioners and representatives from the PPI groups. The ERG is chaired by Liz Hitchins (Chairman/trustee: Dementia Friendly Parishes around the Yealm). These groups work alongside the research team to ensure that we consider the needs of all stakeholders in the research process.

Examples of areas where we have benefitted from their involvement are in developing our recruitment approach, developing the D-PACT intervention, ensuring our research materials are accessible and acceptable to people living with dementia and deciding which outcome measures to use. Involvement of these stakeholder groups is led by Dr Sarah Griffiths.

Dorothy Tudor, carer (far right), was part of the team who developed the original application and will have ongoing input for PPI throughout the project

Dorothy Tudor, carer (far right), was part of the team who developed the original application and will have ongoing input for PPI throughout the project

We would like to thank Dorothy Tudor and Dr Nick Cartmell for their early involvement.

COVID-19: D-PACT's response

The D-PACT approach to recruitment and intervention is flexible and person-centred. Researchers and DSWs use a combination of face-to-face and remote (e.g., telephone calls and video-conferencing) interactions, depending on participant need or preference and the regulations or guidance in place at the time. This approach has proved highly adaptable during the COVID-19 pandemic. When the UK went into lockdown, feasibility study recruitment was paused temporarily. However, the research team has been able to rapidly adapt. The involvement of people who lack capacity (an under-represented population in research) was already a key focus for D-PACT. COVID-19 has intensified and broadened this remit to include the investigation of remote methods of recruitment and the implementation of virtual support interventions.

To find out more, share your experiences or ask questions, please contact us.

Meet the team

This research is a collaboration between the University of Plymouth Faculty of Health and the University of Manchester, with Devon Partnership NHS Trust, the University of Exeter, the London School of Economics, Newcastle University and City University of London. It is led by Professor Richard Byng and Dr Tomasina Oh at Plymouth and Dr Paul Clarkson at Manchester.

The study is supported by the Peninsula Clinical Trials Unit (PenCTU) and the National Institute for Health Research (NIHR) Applied Research Collaboration (ARC) South West Peninsula (PenARC).

University of Plymouth

Collaborators

University of Manchester

Dr Paul Clarkson, Senior Lecturer in Social Care; Manchester Lead

Dr Saqba Batool, Research Assistant

Dr Caroline Sutcliffe, Research Fellow

Ms Rebecca Beresford, Research Assistant

University of Exeter Medical School

Dr Iain Lang, Senior Lecturer in Public Health and Associate Dean (International & Development) and Executive Lead for Implementation Science in the National Institute for Health Research (NIHR) Applied Research Collaboration (ARC) South West Peninsula (PenARC)

Professor Siobhan Creanor, Professor of Medical Statistics & Clinical Trials, Director of Exeter CTU

Dr Obi Okoumunne, Associate Professor in Medical Statistics

Dr Antonieta Medina-Lara, Senior Lecturer in Health Economics

Dr James Fullam, Postdoctoral Research Fellow

Dr Sarah Morgan-Trimmer, Research Fellow

London School of Economics

Dr Mike Clark, Research Programme Manager & Associate Professorial Research Fellow

City, University of London

Professor Rose McCabe, Professor of Clinical Communication, School of Health Sciences, City, University of London

 

Devon Partnership NHS Trust

Dr Colm Owens, Consultant Liaison Psychiatrist for Older People 

Dr Tobit Emmens, Head of Research and Innovation and Honorary Research Fellow, Mental Health, Health Research Services

National Institute for Health Research

The National Institute for Health Research (NIHR): improving the health and wealth of the nation through research. Established by the Department of Health and Social Care, the NIHR:

  • funds high quality research to improve health
  • trains and supports health researchers
  • provides world-class research facilities
  • works with the life sciences industry and charities to benefit all
  • involves patients and the public at every step.

For further information, visit the NIHR website.

Alzheimer’s Society

Join Dementia Research

PenARC

Newcastle University

Professor Louise Robinson, Director, Newcastle University Institute for Ageing and Professor of Primary Care and Ageing; Regius Professor of Ageing

 
 

Newsletters

Introducing a Dementia Support Worker working in Devon, the impact Covid-19 has had on our way of working, how we have adapted our processes to facilitate remote working and our team's upcoming activities.

Focusing on a researcher who is involved in remote recruitment and data collection, our experiences of working remotely, Public and Patient Involvement (PPI) activities and our team's events.




 

D-PACT – Ask a question or share your thoughts

Community and Primary Care Research Group, University of Plymouth, Room N14, ITTC Building, Plymouth Science Park, Derriford, PL6 8BX

Monday to Thursday from 8:30–17:00, Friday 09:30–16:30