Institute of Epidemiology & Health Care



  • “You, Me and the Big D”. This project is a participatory study exploring retirement community residents’ views of dementia before and after attending training by the Alzheimer’s Society. It will be carried out in Whiteley Village by four village researchers with support from Rachael Frost and Alison Armstrong at the Whiteley Foundation for Ageing Well. It is funded by the British Society of Gerontology Averil Osborn Award





  • Empowering Better End of Life Dementia Care (EMBED-Care) Programme”.  This study will generate a step-change in how care is provided for people with dementia which aims to spark public conversation on dying with dementia, engage the public in the work by combining art and science and develop a new tool to maximise quality of life (QoL) and meet individual needs, regardless of age or type of dementia. Qualitative methods including interviews, focus groups and co-design methods will be used throughout the programme of work. This work is led by Elizabeth Sampson at UCL and supported by Nathan Davies as a co-investigator. It is funded by the NIHR and ESRC and is the largest grant ever funded for dementia and end of life care.



  • “Exploring working relationships between primary care and directly employed home care workers”. This study is exploring relationships between directly employed home care workers, community nurses, general practitioners and community-based allied health professionals by extensive use of interviews. Based on the findings we will make recommendations about good practice in care co-ordination, communications and information sharing. This is a collaborative study with the Health and Social Care Workforce Unit at King’s College London and Jane Wilcock and Steve Iliffe at UCL and funded by the Dunhill Medical Trust.


  • PriDem. A study of different ways of providing support through primary care to people with dementia and their families after diagnosis which will review existing services, identify best practice and use this to develop and test new models of support. The study will use extensive patient and public involvement, focus groups, co-design, interviews and process evaluation methods. Jane Wilcock and Rachael Frost work on this study which is funded by The Alzheimer’s Society UK and is beingis conducted at the Centre for Excellence in Newcastle and UCL.


  • Co-designing dementia diagnosis and post-diagnostic care (COGNISANCE)”. This international study aims to co-design and deliver in partnership with people with dementia, family care partners and health care professionals, toolkits and campaigns to improve the dementia diagnostic process and post-diagnostic support in Australia, Canada, the Netherlands, the UK and Poland; and to evaluate the campaigns. Work packages include: exploring through focus groups current experiences, barriers and facilitators to dementia diagnosis and post-diagnosis support from the perspectives of persons with dementia, care partners and health care professionals; the co-development of internationally-applicable toolkits supporting guideline implementation for the at-risk public and health care professionals; and development of an implementation playbook outlining how to deliver similar campaigns in other countries. Jane Wilcock and Professor Greta Rait at UCL work on the UK team of this study which is funded by the Joint Programme Neurodegenerative Disease.