• “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

 

• “Supporting family carers of people with dementia at the end of life: Developing a decision aid (SALSA)”. This study is looking at how to support family carers making decisions about their relative with dementia at the end of life. The study uses qualitative interviews and co-design methods to develop a decision aid. It is led by Nathan Davies and funded by the Alzheimer’s Society’.

 

• “Exploring the use of the internet as a support tool for older family carers of people with dementia”. This study developed a website aimed at supporting carers. The study used qualitative interviews with family carers and co-design methods with family carers and practitioners to develop a website. The website underwent user testing through interviews with family carers. It is led by Nathan Davies and funded by the NIHR School for Primary Care Research.

 

• “Nutrition, hydration and care for people with dementia at the end of life: How can we best support family carers? (Nutri-Dem)”. This study aims to explore carers’ understanding of how best to manage nutrition and hydration at the end-of-life for someone with dementia, identifying possible gaps in knowledge and potential gains of receiving more information.  The study is led by Nathan Davies and is funded by Marie Curie.

 

• “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.

 

• “Improving care in acute hospitals: development and feasibility study of rules- of -thumb to promote comfort and decrease distress (DeCoDe-H)”.  The aim of this study is to develop 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. The study uses observational methods on the acute hospital wards and semi-structured interviews, with findings presented to co-design workshops to develop the intervention. This study is co-led by Nathan Davies and Elizabeth Sampson, Jane Wilcock is a co-applicant and funded by NIHR RfPB.

 

• “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.