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
D-PACT Phase 1: feasibility
The feasibility phase is now nearing completion. During this feasibility stage (which was extended due to COVID-19) 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.
D-PACT Phase 2 : Realist Informed Evaluation
In years four and five, we will carry out a Realist informed multi-level mixed methods longitudinal evaluation with around 18 practices in two to three UK settings. We want to investigate the use of this intervention within real life settings and in various populations. Particularly, sites will represent under-served communities including rural communities, coastal/poor communities and urban/ethnic minorities.
The three aims of phase 2 include:
- to understand how the D-PACT intervention is – and should be – delivered in varied settings (including to different communities) and further refine the programme theory
- to explore the potential value and impact of the D-PACT intervention
- to contribute to methodological development of community-based dementia studies, building on our work on face-to-face and remote recruitment and measuring outcomes for a group with variable capacity.
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, public and stakeholder involvement at every stage
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
Professor Richard Byng
Professor in Primary Care Research/PenARC Deputy Director
Dr Tomasina Oh
Associate Professor - Dementia Research
Dr Cath Quinn
Senior Research Fellow
Professor Rod Sheaff
Professor in Health Services Research
Mr Ian Sherriff BEM
Academic Partnership Lead for Dementia
Dr Lauren Weston
Honorary University Fellow
Dr Hannah Wheat
Senior Research Fellow in Dementia Research
Ms Jane Horrell
Ms Hannah Jones
Mrs Margaret Hart
Research Group Co-ordinator
Mrs Laura Gill
Research Group Co-ordinator
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 and Care Research (NIHR) Applied Research Collaboration (ARC) South West Peninsula (PenARC)
- 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.
In the media
Health Awareness: How a new support system could enrich the lives of people with dementia
This article first featured in Mediaplanet’s ‘Understanding Dementia’ campaign. Written by Tony Greenway.