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), that aims to develop and evaluate a system for dementia support based on 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.

The research

We are currently in the first two years – the feasibility stage – of the study. We are 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.

During this phase, we have developed a theory of how the intervention will work by reviewing the literature and talking to experts including, importantly, 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

 

 

Putting research into practice

We are now putting the intervention into practice and obtaining feedback in order to make improvements.

The intervention is being tested out in a small number of GP practices. We have chosen general practice as the setting to deliver the intervention in order to maximise the prioritisation of physical health care alongside social and emotional needs. The Dementia Support Workers are working alongside GPs and practice nurses, as well as linking with community resources, and are supervised by experienced mental health care workers. They have been trained to use a coaching approach in order to agree on an action plan that is linked to personal priorities, including decisions about future care.

… 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

We have developed procedures for recruitment to ensure that those who need the intervention most are recruited in an ethical way. We are also testing whether it is possible to recruit people living with dementia who do not have a main carer to take part in the study. This is a group who are often excluded from research and, therefore, do not get a chance to contribute to knowledge that informs their carer. Advisors with lived or professional experience (see the following section) play an important role in working with the research team to develop methods for recruitment and for measuring outcomes in order 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 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 other stakeholder involvement

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.

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

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


 

D-PACT response to COVID-19

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.


Remote intervention delivery: During the pause in recruitment, intervention delivery continued in the South West. Where previously, the majority of contact had been face-to-face, the DSW has started to provide support solely through video-conferencing and telephone calls. This has allowed us to learn a great deal about the challenges and facilitators of virtual support. It has also allowed us to appreciate the opportunities that can be created. Not only will the intervention be fit for purpose during future pandemics but it will also allow more flexibility for those who may have always faced challenges with engaging in support, such as those living in rural areas with a lack of transport.

Building on the already flexible approach to recruitment: With input from the PPI and ERG groups, the team have developed and will test a recruitment and consent process. This can be conducted either face-to-face or remotely for people with dementia, depending on the needs and preferences of the individual (e.g., if the individual is shielding) and the circumstances (e.g., during a pandemic where government guidance limits face-to-face contact). This process includes a person-centred approach to judging potential participants’ capacity to make an informed decision about whether to take part in the research. This includes consideration of how best to ensure that Mental Capacity Act (2005) guidance is followed, communication is supported and family are involved when face-to-face interaction is not possible.

These adaptations will not only allow more choice for future D-PACT research participants; once tested, they will inform remote recruitment and intervention delivery methods, for those with and without capacity, that can be modified for other population groups where capacity is an issue (e.g., for those with learning disabilities or traumatic brain injuries). In addition to remote recruitment and intervention approaches, the team are developing research interests sparked by COVID-19, such as the strengths and challenges of running virtual community support groups for people living with dementia and carers.

 

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 Health at the University of Plymouth and Dr Paul Clarkson 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, Newcastle University and City University of London.

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.

Devon Partnership NHS Trust

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

Peninsula Clinical Trials Unit (PenCTU)

This research is a collaboration between the University of Plymouth Faculty of Health 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).