Institute of Epidemiology & Health Care


Dementia and Cognitive Impairment


PriDem Logo

Project Co-applicants and team: Prof Greta Rait, Prof Kate Walters, Jane Wilcock, Dr Sarah Griffiths, Emily Spencer


Care provided after a dementia diagnosis can be poorly communicated. Almost half of people living with dementia and carers receive insufficient support. The 2016 World Alzheimer Report recommended that post-diagnostic dementia support should be primary care led; this means community-based teams (e.g, GPs, practice nurses, pharmacists, occupational therapists, support workers) coordinating care and support from diagnosis onwards. This should enable more appropriate use of expert resource, maintain a higher quality of care, and better meet the needs of a rapidly ageing population. 

Overview of the PriDem study

The PriDem (Primary care led post diagnostic Dementia care) programme aims to develop and test a best practice model of primary care-based dementia support. There are six workstreams (WS) which have sought to examine the experience of key stakeholders (including people living with dementia, their carers, healthcare professionals and commissioners), identifying examples of current good practice, and developing the PriDem person-centered, sustainable model of care.

Workstream 4

The UCL team led on workstream (WS) 1 (looking at successful examples of primary care led support for dementia and other long-term conditions) and lead on WS4. Starting in Autumn 2021, WS4 will test out the PriDem approach to dementia care in a small number of GP practices in the north Est and South East of England. A Clinical Dementia Expert will work with practices - and the associated Primary Care Networks - to develop/strengthen systems for dementia care (e.g., establishing dementia teams within practices), build expertise within practice teams (provide training and practical resources to support care planning), and offer complex case support. We will engage with different groups of people to see how it is working. People living with dementia and their carers will be invited to take part in the study, completing questionnaires and participating in interviews over the course of one year. We will seek the views of the health and social care professionals who are involved in the delivery of the approach, as well as investigating whether the PriDem approach results in more people having a personalised care plan.

Our hope is that the PriDem approach will enhance the care given to people living with dementia and their carers. Based on the data we collect and the feedback we receive, at the end of this phase we will be able to redefine the approach, provide information on costs, and make recommendations for how this approach could be used more widely in practice. If you would like to know more about the PriDem study please email Sarah Griffiths or Emily Spencer (pridem@ucl.ac.uk) or visit the programme website at http://research.ncl.ac.uk/pridem/.



To make our study more accessible, we also have video and audio versions of our information sheets available. Please click below to see the Patient and Carer Information Videos on YouTube.

PriDem is funded by Alzheimer's Society. The programme is led by Newcastle University, in partnership with UCL, LSE, Kings, Manchester, Sussex, Exeter, Dementia UK and ILC UK.

Supporting family carers of people with dementia at the end of life: Developing a decision aid

Many people with dementia reach the end of life without a care plan. Earlier in the disease trajectory people with dementia may not be ready or later able to have conversations about end of life, leaving difficult and/or significant decisions to families. Family carers often do not know how to approach conversations, and make decisions about end of life care, with some feeling uncertain or guilty about these decisions.

This study aims to understand which decisions family carers need to make at the end of life for someone with dementia, and develop a decision aid to support family carers when making these decisions at home and in care homes.

This Fellowship is being undertaken by Dr Nathan Davies with funding from the Alzheimer's Society. It is a three year study which commenced in October 2017.


To develop a decision aid for family carers caring for someone with dementia at the end of life at home or in a care home and a training package to implement the decision aid (WS 3)

Work Stream 1: Systematic Review

WS1 is a systematic review to identify decision aids which have been developed dementia care.

Work Stream 2: Interviews with family carers and people with dementia

WS2 will consist of a secondary analysis of existing data, supplemented by semi-structured interviews with up to 15 family carers and up to 15 people with dementia recruited via primary care and memory services. The interviews will increase our understanding of what decisions need to be made by families and how these decisions should be made. They will also help us explore with people with dementia what decisions they think families should make and how they should approach such decisions.

Work Stream 3: Co-design development of a decision aid

Using a co-design approach and synthesising the findings from WS1 and WS2 we will develop a decision aid for family carers. We will develop the decision aid with four groups of participants (10 per group): people with dementia, family carers, practitioners and professionals representing carer organisations.

Work Stream 4: Feasibility trial

The decision aid will be tested in 2019 with in a 6 month feasibility trial with family carers of someone with dementia at or home or in a care home. This will test the acceptability and feasibility of the tool to inform a larger trial.

For more information please contact Nathan Davies

CADRE: Exploring the use of the internet as a support tool for older family carers of people with dementia


Background: More people are living for longer which has resulted in an increase in the numbers of people living with dementia, making it a global health problem. With no known cure for dementia's progressive course, end of life care is a major priority for people with dementia and their families. Most care for people with dementia is provided at home by family or friends. We know that providing this care can cause psychological distress, more so than in other caring roles. Few carers make use of sources of support outside the home due to the difficulty of leaving their relative or finding suitable stand-in care, with an estimated 10% of carers accessing such sources of support. There is some evidence that internet-based interventions have the potential to improve carer well-being and could address this problem. There is little evidence on how we can better design and format internet-based interventions to make them accessible for this carer group, particularly at the end of life and for older carers (65 years +).

To develop and test the feasibility of an internet-based intervention to support family carers in caring for their relative with dementia at the end of life at home.

A co-design approach following the MRC framework for the development of a complex intervention will include:
1) A scoping review of the available evidence on digital/internet-based interventions for family carers
2) Qualitative interviews with older family carers (65 years +) using purposive sampling to determine the optimal format, focus, content and design of the intervention
3) Refinement of the format, content and functionality of the intervention using the expertise of family carers, practitioners and topic experts.
4) User testing with family carers (the target population) to assess the acceptability and content of the refined intervention.

Impact: This project created a prototype website for further large scale testing with those caring for an individual with dementia at the end of life.

For further information please contact Dr Nathan Davies

CaMDeMPrinciple Investigator: Iva Holmerova, Charles University Prague

UCL Chief investigators: Jane Wilcock, Steve Iliffe

Start date: June 2015

Finish date: June 2019

Main aim or mission of the project:

To explore the evidnce and make recommendations on case management as a complex intervention in dementia, its impact on resource utilisation and the quality of life of patients and caregivers. 


Case management is generally seen as a way to provide efficient, cost-saving person-centred care for people with dementia by connecting together fragmented services, but the available evidence in favour of its merits is often considered inconclusive, unclear and sketchy. This discussion paper investigates the evidence of the benefit of case management for people with dementia and explores the complexity of the concept and the experiences of its implementation. It offers a comprehensive framework for conceptualising various types of case management and asks the question: who can be a case manager? Building on examples from three European countries it addresses the problem of the expansion and adoption of the case management method. It compares the conventional model of diffusion of innovation with the ideas of interessement and co-constitution and envisions a successful model of case management as a fluid technologythat is both friendly and flexible, allowing it to adapt to different settings and systems.


Study Methods:

Scoping review and ethnographic observations. Production of toolkit.

Project co-applicants and collaborators:

Iva Holmerová, Dana Hradcová, Michael Synek, and Radek Carboch, Charles University Prague

Funded by:

Agency for Healthcare Research Czech Republic

Contact details: Jane Wilcock

Project links and documents:


Iliffe, S., Wilcock, J., Synek, M., Carboch, R., Hradcová, D., & Holmerová, I. (2019). Case Management for People with Dementia and its Translations: A Discussion Paper. Dementia18(3), 951–969. https://doi.org/10.1177/1471301217697802



Holmerová I, Iliffe S, Wilcock J (with others) Case management v péči o lidi žijící s demencí: Koordinace péče zaměřená na člověka. Nakladatel:  Univerzita Karlova v Praze 2019.



The Empowering Better End of Life Dementia Care (EMBED-Care) Programme
Chief Investogator: Prof Liz Sampson (Dr Nathan Davies (PCPH Lead))

Start date: January 2019
Finish date: (if applicable) December 2023

Main aim or mission of the project: 
Our goal is to deliver timely person-centred care, improving outcomes, including comfort and QoL, towards end of life. We will develop new knowledge and pilot an innovative intervention to empower people with dementia of all ages, carers and staff, to identify and act upon changing physical, psychosocial and spiritual needs, addressing these across care settings and transitions. We will leverage sustained improvement in care by working with the public, commissioners and policy makers and by creating a network for care, engagement and research capacity.
One third of people aged over 65 will die with dementia, the commonest cause of death in the UK.  People with dementia and their families may struggle to express their needs and concerns, leaving problems underdetected and undertreated over the last months and years of life. Death is unpredictable, and uncertainty is inherent, with inequity of access to good palliative care. A palliative care approach is often started in crisis or when dying is imminent; but should be integrated earlier into routine practice by generalist staff and be “everybody’s business. To meet growing need, we must develop new models of palliative care, delivered by generalist staff via mainstream services, where people with dementia reside (home, care home) and receive care (hospital, at home or in care homes). The EMBED-Care Programme will deliver a model of integrated palliative dementia care, enhancing communication and person-centred decision-making to improve comfort and quality of life.

Study Methods:
This study consists of six workstreams (WS): WS1) synthesis of health and social care policy and evidence; WS2) Retrospective observational study using the South London and Maudsley NHS Foundation Trust Biomedical Research Centre (SLaM BRC) Case Register and its Clinical Record Interactive Search (CRIS); WS3) Prospective longitudinal mixed method cohort study; WS4) Knowledge synthesis; WS5) Co-design intervention development; WS6) Feasibility and pilot trials. 

Study results:

Project co-applicants and collaborators:
Dr Kirsten Moore
Dr Nathan Davies
Dr Nuriye Kupeli  
Dr Bridget Candy
Dr Anna Gola
Professor Simon Mead
Professor Rumana Omar 
Professor Jason Warren 
Jane Ward 
Dr Catherine Evans 
Dr Katherine Eleanor Sleeman
Dr Clare Ellis-Smith
Professor Richard Harding 
Dr Janet Anderson
Professor Robert Stewart 

Funded by:
NIHR ESRC Dementia Research Initative 

Contact details:
Dr Charlotte Kenten - c.kenten@ucl.ac.uk

COGNISANCEPrinciple Investigator: Henry Brodaty, Centre for healthy Brain Ageing, University of New South Wales

Chief investigators: Greta Rait, Jane Wilcock UCL

Start date: 01/07/19

Finish date: 30/06/22

Main aim or mission of the project:

COGNISANCE aims to improve the dementia diagnostic process and post-diagnostic support. Our objectives are to co-design and deliver in partnership with people with dementia, family care partners and health care professionals, print or on-line toolkits. Toolkits will provide structured information, tailored to enable health care practitioners to effectively enact national dementia guidelines around diagnostic and post-diagnostic support, and to empower people with dementia and their family care partners seek the support they require. Toolkits will be delivered using a targeted social marketing campaign in selected regions across Australia, Canada, United Kingdom, the Netherlands and Poland.


There are many national guidelines across the globe which establish benchmarks for best practice diagnosis and support of people living with dementia. Despite this, people with dementia and their family care partners are often dissatisfied with the process of getting a diagnosis and may also receive limited, if any, post-diagnostic support. Diagnosis itself may be difficult to obtain, with estimates of undiagnosed dementia ranging from 43.3% in the UK to 70.7% in Canada. Even if a diagnosis is obtained, some medical practitioners worry about distressing their patients and avoid discussing prognosis. This situation is exacerbated by limited availability or knowledge about post-diagnostic support that may assist people with dementia and their families cope, compensate or even improve symptoms and issues that arise in dementia.


Study Methods:

e will explore, through surveys and focus groups the experience of diagnosis and post diagnostic support from the perspective of people with dementia, family care partners and health care professionals. From this baseline, we will develop internationally adaptable toolkits supporting guideline implementation. We will deliver the toolkits though targeted social marketing campaigns to promote behavioural change to improve health care practitioner’s diagnostic habits and provision of support, as well as increase help seeking by people with dementia and care partners. Success of the campaign will be evaluated using the RE-AIM framework. From our experience, we will produce a ‘playbook’ outlining how to deliver similar campaigns in other countries.


Project co-applicants and collaborators:

Scientia Professor Henry Brodaty, Project Leader, Centre for Healthy Brain Ageing (CHeBA), UNSW Sydney Associate Professor Lee-Fay Low, University of Sydney, Australia Professor Isabelle Vedel, McGill University, Canada Professor Frans Verhey, Maastricht University, Netherlands Professor Dame Louise Robinson, Newcastle University, UK Professor Joanna Rymaszewska, Wroclaw Medical University, Poland Dr Meredith Gresham, Centre for Healthy Brain Ageing (CHeBA), UNSW Sydney

Funded by: JPND “Multinational research projects on health and social care for neurodegenerative diseases” (Alzheimer’s Socety UK)

Contact details: Jane Wilcock


Project links and documents:



Dr Lyn Phillipson, University of Wollongong, Australia Kate Swaffer, Dementia Alliance International Paola Barbarino, Alzheimers Disease International Tarun Dua, World Health Organisation



Developing a shared decision aid regarding NUTRItion and hydration for people with severe DEMentia in acute Hospitals (Nutri-Dem:H)

PhD Student: Kanthee Anantapong

Supervisors: Liz Sampson (Principle Investigator), Nathan Davies

Start date: 1 October 2018

Finish date: 29 September 2021


Main aim or mission of the project:

This study aims to understand how family carers and practitioners make decisions about nutrition and hydration for someone with severe dementia, and to develop a decision aid to support family carers and practitioners when making the decisions in acute hospitals.


Decisions regarding nutrition and hydration for people with severe dementia are often difficult and distressing for family carers and practitioners. In acute hospitals, the decisions are more complicated with the uncertainty of prognosis and treatments of an acute illness. Decisional support like a decision aid can be helpful for them to make the decisions.


Study Methods:

The study consists of three work streams (WS). WS1 is a systematic review of the decision-making process of nutrition and hydration for people with dementia. WS2 will involve semi-structured interviews with family carers and practitioners of people with severe dementia. The interviews will explore their decisions about nutrition and hydration, specifically in acute hospital settings. WS3 will develop a shared decision aid for family carers and practitioners concerning nutrition and hydration for people with severe dementia in acute hospitals. The decision aid will be designed by using a co-design process with groups of family carers, practitioners, and PPI members.


Study results:

Protocol of the systematic review (WS1) has been published on PROSPERO (ID CRD42019131497). Data analysis of WS1 is nearly finished. WS2 and 3 will be commenced in February and June 2020, respectively.


Project co-applicants and collaborators: Marie Curie Palliative Care Research Department


Funded by: Faculty of Medicine, Prince of Songkla University, Thailand


Contact details: kanthee.anantapong.18@ucl.ac.uk


Project links and documents:

Systematic review protocol (PROSPERO ID: CRD42019131497) (https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=131497).

ENDEMIC: dEmeNtia and DEcision MakIng during Covid19

We have produced an evidence-based decision aid booklet to support family carers and people with dementia to make these difficult decisions during COVID-19. Click here to download the decision aid

Project Summary

Background: During the current pandemic, if a person living with dementia becomes unwell, the family and the person living with dementia may have to make rapid decisions. Decisions may concern hospital admission or whether to receive care at home, social distancing, and which treatments the person may or may not wish to receive. This can include very difficult decisions such as whether the person wishes to be resuscitated or have other potentially traumatic treatments. These decisions will have an impact on the emotional wellbeing of both the family and person with dementia.

Methods: This project will consist of three phases: 1) We will identify key factors influencing the choice of place of death in older people, conducting a rapid review of the evidence; 2) We will review and analyse common challenges and decisions family carers of people with dementia are making in relation to COVID-19, from the Alzheimer's Society online community forum. We will also explore concerns of people living with dementia during COVID-19 reported on the forum and; 3) Together with people living with dementia, family carers and health care professionals, we will develop a decision tool for family carers and people with dementia to use when making difficult decisions.

Dissemination and Impact: The tool will provide carers with a clear framework to help them to make decisions and ease feelings of guilt, burden, stress, strain and anxiety. We will work closely with Marie Curie Charity, Alzheimer's Society and British Geriatrics Society to disseminate the tool and our findings to the people who may benefit from using them.

Principal Investigators

Dr Nathan Davies and Dr Nuriye Kupeli

Dates: May - August 2020

Funding: ESRC

Research Team


Prof Liz Sampson Dr Kirsten Moore Dr Emily West Pushpa Nair


PartnersMarie Curie and Alzheimer's Society


Prof Kate Walters Prof Greta Rait  Prof Jill Manthorpe

Nutrition, hydration and care for people with dementia at the end of life: How can we best support family carers?  (Nutri-Dem)

Principle Investigator: Dr Nathan Davies 

Start date: February 2019
Finish date: (if applicable) July 2020

Main aim or mission of the project: 
The aims of this study are to explore carers’ understanding of how best to manage eating and drinking at the end-of-life for someone with dementia; establishing if there are gaps in their knowledge and also identifying what information practitioners provide to carers. We will set the scene for developing a carer resource if this appears desirable.
Difficulties with nutrition and food intake are common among people with dementia. There may be changes in perceptions of food including altered taste and smell of food, which may make them undesirable to the individual. As someone with dementia approaches the end-of-life, their symptoms become progressively worse and hard to manage for carers, and may become distressing. One of the most common and distressing symptoms for carers is difficulty eating and drinking due to swallowing problems. Carers remain uncertain about how to best cope with these challenges.

Study Methods:
This study consists of three phases: Phase 1) identify existing information resources for carers and existing guidelines for practitioners; Phase 2) semi-structured interviews with family carers, people with mild dementia and practitioners; Phase 3) a co-design process with people with dementia, practitioners and carers consider the findings of Phase 2 to develop a resource to support family carers at home.

Study results:

Project co-applicants and collaborators:
Prof Greta Rait
Prof Liz Sampson
Dr Christina Smith
Prof Jill Manthorpe
Dr Kirsten Moore
Dr Yolanda Barrado-Martin
Dr Pushpa Nair
Dr Lee Hatter 

Funded by:
Marie Curie

Contact details:
Dr Yolanda Barrado-Martin  y.barrado@ucl.ac.uk

Project links and documents:

Improving care in acute hospitals: development and feasibility study of rules- of -thumb to promote comfort and decrease distress (DeCoDe-H) 

Chief Investogator: Dr Nathan Davies and Prof Liz Sampson

Start date: October 2018
Finish date: (if applicable) July 2020

Main aim or mission of the project: 
To develop and test the feasibility of a simple, acceptable, and practical intervention to support acute hospital staff and family carers in identifying discomfort and distress, maximising comfort (and thus wellbeing) and reducing behaviours that challenge or are distressing to people with dementia who are in an acute hospital for assessment, treatment, or care, and may not be able to communicate their needs. 
Up to 42% of acute hospital inpatients have dementia. Being unable to communicate their discomfort and needs may lead to distress and agitation. Maintaining comfort is a neglected aspect of care. Heuristics (“rules-ofthumb”) provide a simple intervention to maximise comfort and reduce distress and pain.

Study Methods:
This study consists of three workstreams (WS): WS1) Observational study in medical wards from three diverse acute hospitals to understand causes, impact and management of discomfort; WS2) co-design development of rules of thumb; WS3) Feasibility study. 

Study results:

Project co-applicants and collaborators:
Prof Greta Rait
Prof Jill Manthorpe
Dr Vicki Vickerstaff
Dr Anna Gola
Jane Wilcock
Jane Ward 


Funded by:

Contact details:
Dr Emily West – emily.west@ucl.ac.uk

After the Liverpool Care Pathway Study – Rules of thumb for end of life care for people with dementia (ALCP)

Chief Investogator: Dr Nathan Davies 

Start date: October 2014
Finish date: (if applicable) July 2017

Main aim or mission of the project: 
The aim of this study was to develop and test the usability and acceptability of a set of heuristics (rules of thumb) which could be used by practitioners providing end of life care for people with dementia in a variety of clinical and care settings.
End of life care for people with dementia can present a multitude of challenges and difficult decisions for practitioners. These challenges may include assessment and management of difficulties with eating and swallowing, responding to agitation, treating pain, and managing recurrent infections. Practitioners sometimes lack both confidence in making end of life decisions and guidance. This study developed an alternative to lengthy guidelines, in the form of rules of thumb which were tested in clinical settings

Study Methods:
This study was split into three phases: Phase 1: conducted focus groups with families and practitioners to develop an understanding of the difficulties and challenges practitioners face when caring for someone with dementia at the end of life; Phase 2) used co-design methods with family carers, professionals and leading experts to develop a novel, simple and applied set of rules of thumb; Finally Phase 3) Tested the feasibility of the developed heuristics in real settings including general practice, hospitals, palliative care community teams, and community nursing teams. The rules of thumb were evaluated by conducting semi-structured interviews with users.

Study results:
Four heuristics were developed covering: eating and swallowing difficulties, agitation and restlessness, reviewing treatment and interventions at the end of life, and providing routine care. The five sites reported that the heuristics were simple and easy to use, comprehensive, and made implicit, tacit knowledge explicit. Four themes emerged from the qualitative evaluation: authority and permission; synthesis of best practice; providing a structure and breaking down complexity; and reassurance and instilling confidence. The heuristics can be downloaded here 

Project co-applicants and collaborators:
Prof Steve Iliffe 
Prof Jill Manthorpe
Prof Liz Sampson
Funded by:
Alzheimer’s Society and Marie Curie

Contact details:
Dr Nathan Davies – n.m.davies@ucl.ac.uk

Project links and documents:

1)    Davies N, Manthorpe J, Sampson E L, Lamahewa K, Wilcock J, Mathew R, Iliffe S. (2018). Guiding practitioners through end of life care for people with dementia: The use of Heuristics. Plos One. 13(11): e0206422
2)    Lamahewa, K., Mathew, R., Wilcock, J., Iliffe, S., Manthorpe, J., Sampson, E.L., & Davies, N. (2018).  A qualitative study exploring the difficulties influencing decision-making at the end-of-life for people with dementia. Health Expectations, 21(1), 118-127
3)    Davies, N., Mathew, R., Wilcock, J., Manthorpe, J., Sampson, E.L., Lamahewa, K., Iliffe, S. (2016). A co-design process developing heuristics for practitioners providing end-of-life-care for people with dementia. BMC Palliative Care, 15(68). 
4)    Mathew, R., Davies, N., Manthorpe, J., Iliffe, S. (2016). Making decisions at the end of life when caring for a person with dementia: A literature review to explore the potential use of heuristics in difficult decision-making. BMJ Open, 6: e010416


PDF icon .

Click here to download the rules of thumb.