D-PACT: Dementia - Person Aligned Care Team

Overview 

The Dementia – PACT programme is a five-year project, funded by a National Institute for Health Research (NIHR) Programme Grant for Applied Research (PGfAR), that aims to develop and evaluate a system for dementia support based in general practice for people with dementia and their carers.

Currently, there are a range of dementia support services and roles that exist in order 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 where there is limited evidence to support their effectiveness.

Aims

The Dementia - 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.

The research

We will develop a Dementia Support Worker intervention that provides ongoing support to meet the needs of people with dementia and their carers:

  • mental wellbeing
  • physical health
  • support to achieve social goals
  • improved quality of life.

We have chosen general practice as the setting to deliver the intervention in order to maximise the prioritisation of physical healthcare alongside social and emotional needs. The Dementia Support Workers will work alongside GPs and practice nurses, as well as linking with community resources, and will be supervised by experienced mental health care workers. They will be trained to use a coaching approach in order to agree goals linked to personal priorities, including decisions about future care.

In the first two years, we will further develop the theory of how such an intervention will work by reviewing the literature and talking with experts experts and importantly people with dementia and their carers. We will then put the intervention into practice and obtain feedback in order to make improvements.

We will develop procedures for recruitment to ensure that those who need the intervention most are recruited, in an ethical way. We will also test whether it is possible to recruit people with dementia without carers (who are often excluded from trials). Stakeholders will decide together the outcome measures to be used to evaluate the intervention.

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 completion. This will help to understand how policy, organisations, training and commissioning can ensure 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 Public Involvement (PPI)

A Peer Research Group (PRG) that will include people with dementia and their carers will be developed and supported. This group, overseen by Ian Sherriff and Dr Val Mann, will link into the Intervention Development Group (IDG) and be involved in all areas of work, ensuring that there is meaningful input from PPI from the planning stage onwards.

There will be PPI involvement in the design and management of the research (including representation on the programme steering committee) and the development of participant resources, through to analysis, reporting and dissemination. The IDG will be co-chaired by Dr Nick Cartmell and Mrs Dorothy Tudor (carer) and will include representation from people with dementia and their carers from each trial region.

Dorothy Tudor

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

Dorothy Tudor, far right

Meet the team

This research is being led by Professor Richard Byng at the Faculty of Medicine and Dentistry at the University of Plymouth and Professor David Challis at the University of Manchester, in collaboration with Devon Partnership NHS Trust, the University of Exeter, the University of Manchester, the London School of Economics and Newcastle University.

The study is supported by the Peninsula Clinical Trials Unit (PenCTU) and the NIHR Collaboration for Leadership in Applied Health Research and Care South West Peninsula (PenCLAHRC).

University of Plymouth

Collaborators

University of Manchester

Professor David Challis, Professor of Community Care Research and Director PSSRU (Personal Social Services Research Unit

University of Exeter Medical School

Professor Rose McCabe, Professor of Clinical Communication

Dr Iain Lang, Senior Lecturer in Public Health and Associate Dean (International & Development) and Executive Lead for Implementation Science in the NIHR Collaboration for Leadership in Applied Health Research and Care – South West Peninsula (PenCLAHRC).

Dr Obi Okoumunne, Associate Professor in Medical Statistics

Dr Antonieta Medina-Lara, Senior Lecturer in Health Economics

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

PenCLAHRC

Dr Nick Cartmell, Primary Care Dementia Research Advisor, PenCLAHRC / GP, Ashburton Surgery

Newcastle University

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

 

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.

Devon Partnership NHS Trust

Alzheimer’s Society

Join Dementia Research

PenCLAHRC

Peninsula Clinical Trials Unit (PenCTU)

This research is a collaboration between Plymouth University Peninsula Schools of Medicine and Dentistry and The University of Manchester, along with several other institutions and individuals. It is being led by Professor Richard Byng and Dr Val Mann at Plymouth and Professor David Challis at Manchester. It is managed by the Peninsula Clinical Trials Unit (PenCTU).