Our research

• GIAM Chief Investigator: Dr Shadreck Mwale
• GIAM Co-Chief Investigator: Prof Katie Featherstone
• GIAM Co-Investigators: Prof Juanita Hoe, Dr Andy Northcott, Dr Megan Wyatt.
• Funding: NIHR160824 

Aims

This study aims to better understand the experiences of African and African Caribbean people who are living with dementia that seek support from Adult Social Care. We aim to improve how services recognise and support African and African Caribbean people living with dementia, alongside their families and care partners.

We will use the findings to improve how services recognise and support African and African Caribbean people living with dementia. We will develop free and accessible guidance and training for health and social care practitioners and for anyone caring for African and African Caribbean PLWD.

Our goal is to ensure this vulnerable population has better experiences of health and social care services and are supported in living well with dementia in their own homes. 

• Chief Investigator: Dr Jo Hope, University of Southampton
• GIAM Co-Chief Investigator: Prof Katie Featherstone
• Partner Institution: School of Health Sciences, University of Southampton
• Funding: NIHR206167 

Adults with learning disabilities experience poor hospital care, which includes serious missed care (inadequate food and drink, withheld blood tests and failure to notice serious illness). This results in avoidable deaths, hospital-acquired infections, infections and blood clots after operations, bed sores, and serious drug reactions. Family carers are also over-relied upon to provide 24-7 care. People with learning disabilities are often ignored with staff speaking to carers instead. However, carers’ serious concerns have been ignored, leading to avoidable deaths. Despite the support of Learning Disability Liaison Nurses and pockets of good practice, there is strong evidence that care by ward staff is unpredictable and can be unsafe, but we do not understand why.

We will work with people with learning disabilities, carers, and hospital staff to co-design resources to improve ward care for people with learning disabilities. This will include: (a) recommendations to the NHS on adapting ward care; (b) a masterclass on ward care for participating hospitals; (c) a briefing to NHS England and the Care Quality Commission on improving how ward care is checked and managed; and (d) guidance and a toolkit on making ‘co-design’ more inclusive, including for people with profound learning disabilities.   

• GIAM Chief Investigator: Prof Katie Featherstone
• GIAM Co-Investigators: Dr Andy Northcott, Dr Paula Boddington
• Funding: NIHR13/10/80 

This project was funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme and is published in full in Health and Social Care Delivery Research; Vol. 10, No. 14. See the NIHR Journals Library website for further project information.

This study’s focus was a common, but poorly understood, aspect of everyday care for people living with dementia during an acute admission, that is continence care. We asked the following questions: what caring practices are observable when interacting with this patient group? How do ward teams respond to and manage continence needs? What informs these approaches? What are staff doing and why?

Study registration: This study is registered as PROSPERO CRD42018119495.

• GIAM Chief Investigator: Prof Katie Featherstone
• GIAM Co-Investigators: Dr Shadreck Mwale, Dr Andy Northcott, Dr Megan Wyatt, Dr Paula Boddington
• Partner Institutions: University of Bristol, Dementia UK, Leeds Beckett University, Cardiff University.
• Funding: This project was funded by the NIHR HS&DR Program. More information of our funding and this project can be found on the Funding Awards website.

Our research will allow us to better understand the everyday use of restrictive practices in the care of people living with dementia during a hospital admission, exploring both the rationales for and impacts that these interventions can have on patients and staff.

We will use our research to provide new evidence showing how hospital care could change to improve care and the experiences of patients, families, and staff. We will also use it to develop online (free and accessible) training for hospital staff and for anyone caring for people living with dementia. We will identify good practice and alternative ways to ensure safety and reduce risk that can be implemented in wards and tested in future research studies.

• Chief Investigator: Dr Mary Lavelle Queens University Belfast
• GIAM Co-Investigator: Prof Juanita Hoe
• Partner Institutions: Queens University Belfast, City, University of London, Monash University, Kings College London
• Funding: NIHR201508

Professor Juanita Hoe is a co-investigator on the CARR study, a project to identify the staff and team communication that characterises successful de-escalation of patients displaying aggressive behaviour in acute mental health settings, avoiding the need to use physical restraint (held to prevent movement), seclusion (locked in isolation), and forced tranquilisation (involuntarily injected with psychotropic medication).

• Find out more via the Research Centres website.

• GIAM Chief Investigator: Prof Juanita Hoe
• Partner Institutions: City, University of London, UCL, Alzheimer Society Research Network, Camden and Islington NHS Foundation Trust
• Funding: Dunhill Medical Trust

Professor Juanita Hoe is the chief investigator for a study to evaluate the validity, feasibility and acceptability of a risk assessment tool designed for use with people living with dementia in the community.

• Find out more via the Protocols website.

• Chief Investigator: Prof Claudia Cooper, Queen Mary, University of London
• GIAM Co-Investigator: Prof Juanita Hoe
• Partner Institutions: UCL, Queen Mary, City, University of London, Reading University, University of Bradford, KCL, Exeter University
• Funding: Alzheimer’s Society

Professor Juanita Hoe is a co-investigator on a project to enable people with dementia to live a quality life at home through supporting them and their family carers, directly and through improving home care services.

• Visit the Alzheimers website, Noclor website and The Lancet for more information.

• Chief Investigator: Prof Martin Orrell, University of Nottingham
• GIAM Co-Investigator: Prof Juanita Hoe
• Partner Institutions: Nottingham University, Manchester University, UEA, University of Hull, UCL
• Funding: NIHRRP-PG-0612-20004

Professor Juanita Hoe is a co-investigator on the AQUEDUCT study, a research programme to improve quality and effectiveness of care for people with dementia experiencing a mental health crisis, and to investigate consequential impact on hospital admissions and costs, and experiences for people with dementia and carers receiving input.

• Visit the Institute of Mental Health website and Trials Journal website for more information.

• Chief Investigator: Prof Martin Orrell, University of Nottingham
• GIAM Co-Investigators: Prof Juanita Hoe, Prof Katie Featherstone
• Partner Institutions: Nottingham University, Exeter University, Bangor University, University of Leicester, UCL
• Funding: NIHR206255

Professor Juanita Hoe and Professor Katie Featherstone are co-investigators on a project to develop and evaluate the Lived Experience Narratives for Dementia (LEND) Intervention. The LEND Intervention will be a web-based curated collection of lived experience narratives from people with dementia and carers.

• GIAM Co-Chief Investigator: Dr Laura Cole
• Partner Institutions: University of Northampton, University of Worcester
• Funding: Wellcome 

The DEfIN-YD (Dementia Experts for Involvement Network – Young Dementia) project aimed to develop and pilot a Patient and Public Involvement and Engagement (PPIE) network to encourage people diagnosed with Young Onset Dementia (YOD) to become more involved in research. A PPIE network was developed consisting of three regional groups in England which met monthly online to discuss YOD research priorities and work closely with academic and researchers to shape dementia research projects. 

• GIAM Chief Investigator: Dr Laura Cole
• Partner Institutions: University of Northampton, University of Worcester
• Funding: UWL Knowledge Exchange Seed Fund 

The purpose of this project is to continue the work of DEfIN-YD and support monthly Young Onset Dementia Patient and Public Involvement and Evolvement Research Network (YOD PPIE RN) meetings. This includes reimbursing members (people with YOD) for their time and develop a long-term financial plan for the continuation of the RN. The establishment of a sustainable YOD PPIE RN will be the first of its kind and will be an invaluable resource for researchers (and service providers) nationally and potentially internationally. 

• Chief Investigator: Prof Maud Graff, Radboud University Medical Center (Nijmegen)
• GIAM Co-Investigator: Dr Federica D’Andrea
• Partner Institutions: Radboud University Medical Center (Nijmegen), Maastricht University Netherlands and Karolinska Institutet (Sweden), University of Worcester, University of Bradford, Windesheim University of Applied Science (Netherlands), Vrije Universiteit Brussel (Belgium), University of Hertfordshire
• Funding: Alzheimer's Association, Advancing Research on Care and Outcome Measurement (ARCOM) programme

Dr Federica D’Andrea’s interest on innovative and complex interventions extend to advance knowledge on the methodologies and approaches for developing and evaluating complex interventions.

As a co-applicant on the awarded project ‘METHODEM: Methodological consensus for complex Interventions in dementia’ funded by the Alzheimer's Association, Advancing Research on Care and Outcome Measurement (ARCOM) programme, she will dedicate the next two years to identified relevant methodologies and reach consensus on relevant methodologies and approaches for psychosocial intervention research placed within, between or alongside phases of the current Medical Research Council Framework for the development and evaluation of complex interventions.