The PriDem Project: developing a ‘good practice’ model of dementia care
About
It is estimated that 900,000 people are living with dementia. However, diagnosis rates remain low, recent research indicates that across England, only around 57% of all dementia cases are diagnosed. Even when a person does receive a diagnosis, they – and the people caring for them – are left without adequate support.
The PriDem programme has been funded by the Alzheimer’s Society to develop and test a ‘good practice’ model of primary care-led, post-diagnostic dementia care. The work of PriDem is organised into six parts, called workstreams (WS), which will be completed over five years. The project started on the 1st April 2018 and will conclude at the end of September 2023.
The research is being conducted by a multi-disciplinary team led by Professor Dame Louise Robinson at Newcastle University, in collaboration with a number of partner organisations including the ILC. The other partners involved are:
University College London; Kings College London; University of Sussex; University of Manchester; Dementia UK; London School of Economics and Political Science; University of Exeter.
Research continues to highlight the urgent need for good quality, accessible and equitable post-diagnostic dementia care and support in which has been further exacerbated by the coronavirus pandemic.
The PriDem intervention aims to enable people living with dementia and their carers to live as well as possible by enhancing primary care-based post-diagnostic support. It specifically targets key barriers to providing this support and was informed by evidence about good practice.
The PriDem team is currently testing the intervention in local GP surgeries. The intervention is led by ‘Clinical Dementia Leads’ (CDLs), one in the Northeast and one in the Southeast. Both have nursing backgrounds. The emphasis is on developing sustainable improvements in dementia care and support through three key intervention ‘strands’:
- Developing systems for delivery of evidence-based, post-diagnostic support in Primary Care
- Delivering tailored care and support to meet the needs of people with dementia & their families within Primary Care
- Building capacity and capability by supporting non-specialists to deliver dementia care & support
Read more
What is the PriDem intervention?
A more detailed overview of the PriDem intervention project
Further information can be found on the PriDem website.
PriDem Project Team & Advisory Group
Newcastle University
Claire Bamford Senior Research Associate Population & Health Sciences Institute
Ester Bellavia PhD Student Institute of Health & Society
Dr Laura Booi Research Associate
Dr Greta Brunskill Research Associate
Dr Lynne Corner Director of Engagement Population Health Sciences Institute
Alexander Hagan, Research Assistant Population Health Sciences
Angela Mattison Senior Research Administrator Faculty of Medical Sciences
Dr Marie Poole Senior Research Associate Population Health Sciences Institute
Dr Alison Wheatley Research Associate
University College London
Dr Federica D’Andrea Post Doctoral Research Assistant Department of Primary Care & Population Health
Dr Rachael Frost Research Associate Department of Primary Care & Population Health
Dr Sarah Griffiths Senior Research Fellow Institute of Epidemiology & Health
Professor Greta Rait Professor of Primary Care and Health Services Research, Priment Clinical Trials Unit Department of Primary Care & Population Health
Emily Moran Spencer Research Assistant Institute of Epidemiology & Health
Professor Kate Walters Director, Centre for Ageing Population Studies Clinical Reader in Primary Care & Epidemiology Department of Primary Care & Population Health
Jane Wilcock Senior Research Associate
University of Exeter
Professor Louise Allan Professor of Geriatric Medicine Institute of Health Research
Kings College London
Professor Jill Manthorpe Professor of Social Work, Director of the NIHR Social Care Workforce Research Unit
London School of Economics
Professor Martin Knapp, Professor of Social Policy PSSRU, Department of Health Policy
Mr Raphael Wittenberg Associate Professorial Research Fellow Personal Social Services Research Unit
University of Manchester
Professor Alistair Burns Professor of Old Age Psychiatry
University of Plymouth
Professor Sube Banerjee Executive Dean
National Institute for Health & Care Research
Revd Doug Lewins PPI representative
Sue Tucker PPI representative
Alzheimer’s Society – Project funder
Malayka Rahman-Amin, Research Evidence Manager, Alzheimer’s Society
Other advisory group members
Emily Evans, Senior Communications and Engagement Officer, ILC-UK
Dr Karen Harrison-Dening, Head of Research & Publications, Dementia UK and Admiral Nursing
Remco Tuijt PhD Student
REPORTS
Here are just a selection of reports and academic papers published around the PriDem project so far:
Changes to post-diagnostic dementia support in England and Wales during the Covid-19 pandemic: a qualitative study Alison Wheatley, Marie Poole, Louise Robinson, on behalf of the PriDem study team (BMJ Open 2022)
How do we meaningfully engage stakeholders in developing a best practice approach to post-diagnostic dementia support? Greta Brunskill, Alison Wheatley, Claire Bamford, Laura Booi, Joe Costello, Jo Herbert J, Sue Tucker, Louise Robinson, on behalf of the PriDem study team (The Journal of Dementia Care March/April 2022)
The 2016 World Alzheimer’s Report, found that the current model for healthcare support is unsustainable and unaffordable.
The Alzheimer’s Society’s ‘Dementia 2015‘ report, found that nearly half of people with dementia receive inadequate support
Past Events
24/11/22
Future of Ageing Conference – Time for the Dementia Moonshot? The future of dementia
Speakers included – Prof. Louise Robinson, Professor of Ageing at Newcastle University, Fiona Carragher, Director of Research and Influencing, Alzheimer’s Society, Conn O’ Neill, Public Affairs, Roche
05/09/22
Roundtable on living well with dementia in Newcastle
ILC-UK held a round table to better understand how services can support people living with dementia and their careers in the Northeast. Professor Louise Robinson spoke about the PriDem project.
Videos
18/03/22
The videos below give more information about the PriDem study (workstream 4) and what it involves.
Patient information
If you are a person with problems with memory or thinking, please watch the patient information video.
Carer information
If you are a friend or family member of a person with problems with memory or thinking, please watch the carer information video.
Blogs
07/09/2022
My dementia diagnosis experience was abhorrent so I became a campaigner
Blog by: John, living with Alzheimer’s
When John was diagnosed with young-onset Alzheimer’s disease, it was a huge shock to him and his family. He received little support after the news was delivered and is now campaigning to improve the diagnosis experience.
News
27/10/22
Retail therapy – Dementia and spending
People with dementia are being let down by the high street, retailers and the financial services industry. However, we argue in our research report published today that if steps were taken to make services more accessible for this group, they could bring in nearly £1bn to the UK economy.
Get in touch
If you would like to take part in the study by email at pridem@newcastle.ac.uk or by telephone at 0191 2085625.
If you want to simply find out more about this project, please contact: events@ilcuk.org.uk