Dementia research

We undertake high quality research that empowers people with dementia and their carers to live and die well, and have an outstanding track record of wide-ranging dementia-related research.

People with dementia, their families and their carers inform our work at all stages, and we work closely with local and national dementia charities, NHS and social care regional and national research systems. Our work is supported by our dementia advisory board consisting of people with dementia and carers which meets at the University.

For further information please see the Dementia Research at Hull website.

Projects
Study	Full title	Type	Area	Funder
Behaviours that Challenge	'Behaviours that Challenge' (BtC) in Dementia care: FPOP Dementia Workstream. Funder BPS.	Stakeholder consultation Survey Expert consensus groups	Dementia Changes in behaviour	British Psychological Society
Methodology and Measurement in Dementia Care (2003 - Ongoing)			Dementia Outcome measures	JPND
Challenge Demcare	Challenge Demcare	Digital	Dementia Changes in behaviour Staff training/ education	NIHR
CAREGIVERSPRO	CAREGIVERSPRO-MMD	Digital Mixed methods Co-design	Dementia Information Peer support Digital innovations	European Union Horizon 2020
MEDREV	Introduction of a Pharmacy and Psychosocial Intervention in Residential and Nursing Homes to Limit the Use of Psychotropic Medication to Treat Behavioural and Psychological Symptoms of Dementia (Bpsd) – a Feasibility Study (MEDREV)		Dementia Behaviour/Psychological Symptoms Pharmacy Training	NIHR RfPB
Dementia and Wellbeing

Behaviours that challenge

This project is working to update the 2013 British Psychological Society Briefing ‘Alternatives to Antipsychotic Medication in People with Dementia' by translating applied research knowledge about psychological approaches to behavioural care - challenges for practice. The study has been informed by consultations with key stakeholders including professionals of all disciplines, care home organisations, NHS England networks, people with dementia and families.

More information

Project team

Ian James, Cumbria, Northumberland, Tyne and Wear NHS Foundation Trust

Esme Moniz-Cook,, University of Hull

Frances Duffy, Northern Health and Social Care Trust

Outputs

Dunn, R. and Moniz-Cook, E. (2019) Evaluating interventions for Behaviours that Challenge (BtC) in dementia care – what instruments do specialist practitioners working in the UK use? FPOP Bulletin.

Wolverson, E., Dunn, R., Moniz‐Cook, E., Gove, D. and Diaz‐Ponce, A. (2021). The language of behaviour changes in dementia: A mixed methods survey exploring the perspectives of people with dementia. Journal of Advanced Nursing.

Further Behaviours That Challenge project papers are available here.

Methodology and Measurement in Dementia Care (2003 - ongoing)

Hull’s applied research on methodology and measurement in dementia has grown from 2003, with a strong focus on validated instruments that can be used in routine clinical practice. Many of our projects have been a collaboration between members of the INTERDEM network, with a key programme funded by the EU Joint Programme Neurodegenerative Disease (JPND): Longitudinal Cohorts Working Groups (2014 -2015) ‘Dementia Outcome Measures; charting new territory’ (2014-2015), and a positive psychology perspective to the development of outcome measures.

Key methodological work has outlined the importance of the ‘Implementation Error’ that can arise in studies of effectiveness, quality indicators and meta-ethnographic reviews to synthesise literature related to our research topic.

More information

Outputs

Report of a JPND Working Group on Longitudinal Cohorts

Project team

Esme Moniz-Cook,, University of Hull

Challenge Demcare

This NIHR funded study developed approaches in respect of ‘behaviours that challenge’ in people living with dementia, both in care homes and family homes. The study led to the development of an interactive computer system to assist mental health workers to support family carers and help care home staff to provide a better quality of life for people with dementia. It is hoped that this system will reduce stress levels for the mental health workers and care home staff themselves.

More information

Challenge Demcare included a systematic Cochrane review, development and testing of an online e-learning and e-tool system and two studies on the management of challenging behaviour: in care homes (ResCare) and in family care (FamCare). This completed programme of work is currently translating its knowledge for use by specialist dementia care practitioners in their practice.

Funded by NIHR

Outputs

A list of Challenge Demcare project publications is available here.

Project team

Caregiverspro-MMD (2015-2019)

Carers (family members and friends) and people with dementia have been identified as experiencing social isolation and lack of access to the information they need, when they need it. Digital technologies may be able to address some of these gaps through the provision of online information and social networks to enable peer support. Online support has been developed for carers, but little attention has been paid to similar resources for people with dementia.

More information

The CAREGIVERSPRO-MMD research project explored the use and usability of a website – the CAREGIVERSPRO-MMD website - which was designed for use by carers and people with dementia together. The website aimed to provide access to information and support, and was designed with people with dementia and their carers. Piloting of the website took place across four European sites. Training was given to help people use the website during the pilot. Hull was the UK pilot site for the project and recruited 200 dyads (people with dementia and carers).

AIMS

To test the use and usability of the CAREGIVERSPRO-MMD website by people with dementia and carers.

Quantitative data collections were undertaken to explore levels and patterns of usage, and outcomes for users across a range of domains; qualitative data collection explored participant experiences of using the website, facilitators and barriers to use.

Project team

Emma Wolverson (Senior Lecturer, Ageing and Dementia)

Kevin Paulson

Rosie Dunn

Evi Zafeiridi

Rebecca Platt

Caroline White (Research Associate)

Jonathan Thorpe

Dave Howe

Katie Cunnah (Post-Doctoral Research Assistant)

CONTACT

Dr Emma Wolverson - E.Wolverson@hull.ac.uk

FUNDED BY

European Union Horizon 2020

Outputs

Wolverson, E., White, C., Dunn, R., Cunnah, K., Howe, D., Paulson, K., Platt, R. and Thorpe, J. (2021) The use of a bespoke website developed for people with dementia and carers: Users’ experiences, perceptions and support needs. Dementia. https://doi.org/10.1177%2F14713012211028495

White, C., Dunn, R., Wolverson, E. and Zafeiridi, E. (2020). The views of carers, people living with dementia and healthcare practitioners about the value of online information and peer support. International Journal of Care and Caring.

Cunnah, K., Howe, D., Thorpe, J., Dunn, R., Platt, R., White, C., Paulson, K. and Wolverson, E. (2019). Training people with dementia/cognitive impairment and their carers in the use of web-based supportive technologies (Innovative practice). Dementia, p.147130121988759.

Howe, D., Thorpe, J., Dunn, R., White, C., Dunn, R., Cunnah, K., Platt, R., Paulson, K. and Wolverson, E. (2019). The CAREGIVERSPRO-MMD Platform as an Online Informational and Social Support Tool for People Living With Memory Problems and Their Carers: An Evaluation of User Engagement, Usability and Usefulness. Journal of Applied Gerontology. [online] Available at: https://hull-repository.worktribe.com/output/3168384 [Accessed 11 Jan. 2021].

Wolverson, E,. White, C. and Dunn, R. (2019) Technology for families of people with dementia, in “Using Technology in Dementia Care: A Guide to Technology Solutions for Everyday Living” (Eds A Astell, S Smith and P Jodrell), Jessica Kingsley Publishers

Oliva-Filipe, L., Barrue, C., Cortes, A., Wolverson, E., Antomarini, M., Landrin, I., Votis, K., Paliokas, I. and Cortes, U. (2018) Health Recommender System design in the context of CAREGIVERSPRO-MMD Project. Proceeding of PETRA ’18: The 11th PErvasive Technologies Related to Assistive Environments Conference, June, Corfu, Greece

Zafeiridi, P., Paulson, K., Dunn, R., Wolverson, E., White, C., Thorpe, J.A., Antomarini, M., Cesaroni, F., Scocchera, F., Landrin-Dutot, I., Malherbe, L., Lingiah, H., Bérard, M., Gironès, X., Quintana, M., Cortés, U., Barrué, C., Cortés, A., Paliokas, I., Votis, K. and Tzovaras, D. (2018). A Web-Based Platform for People With Memory Problems and Their Caregivers (CAREGIVERSPRO-MMD): Mixed-Methods Evaluation of Usability. JMIR Formative Research, [online] 2(1).

During the Caregiverspro research we ran regular group training sessions for people living with dementia and carers. We have used the insights from this experience to produce a guide for people facilitating training sessions in using digital technologies for people living with dementia and carers.

medrev:

Introduction of a pharmacy and psychosocial intervention in residential and nursing homes to limit the use of psychotropic medication to treat Behavioural and Psychological Symptoms of Dementia (BPSD) – a feasibility study

In an attempt to reduce antipsychotic and other medicines (e.g. anti-depressants and benzodiazepines) used for behaviours that challenge in care homes, the MEDREV study consisted of staff training (for care home staff and GPs) and medication reviews by a specialist pharmacist. It was a feasibility study, designed to see if we could conduct a full trial in this area. The training was designed so that care staff could manage behaviours that challenge without the need for medication. The pharmacist reviewed the medication and made recommendations to the GP.

More information

The MEDREV study was able to deliver a programme that increased staff ability to manage behaviours that challenge and reduced reliance on medication. Further development work is required.

MEDREV was led by Aston University (P.I. Dr Ian Maidment). Further information about the study is available here

AIMS

To test the feasibility of staff training and medication review to limit the inappropriate prescribing of psychotics for behavioural and psychological symptoms of dementia.

FUNDED BY

National Institute for Health Research (NIHR) Research for Patient Benefit (RfPB) Programme (Grant Reference Number PB-PG-0613- 31071)

Project team

Chief investigator and grant leader Dr Ian Maidment (Aston University)

Dr Andrea Hilton (University of Hull)

Dr Garry Barton (University of East Anglia

Dr Sarah Damery (University of Birmingham)

Professor (Emeritus) Steve lliffe

Jane Wilcock (University College, London)

Dr Rachel Shaw (Aston University)

Dr Nichola Seare (Aston University)

Graeme Brown, Emma Randle, Nigel Barnes (Birmingham and Solihul Mental Health NHS Foundation Trust)

Niyah Campbell (Aston University)

Sarah Gillespie (Oxford Brookes University)

Professor Chris Fox (University of East Anglia)

CONTACT

Dr Andrea Hilton – a.hilton@hull.ac.uk

Outputs

Maidment ID, Barton G, Campbell N, Shaw R, Seare N, Fox C, Iliffe S, Randle E, Hilton A, Brown G, Barnes N, Wilcock J, Gillespie S, Damery S (2020). MEDREV (pharmacy-health psychology intervention in people living with dementia with behaviour that challenges): the feasibility of measuring clinical outcomes and costs of the intervention. BMC Health Serv Res 20, 157. doi.org/10.1186/s12913-020-5014-0

Maidment ID, Damery S, Campbell N, Seare N, Fox C, Iliffe S, Hilton A, Brown G, Barnes N, Wilcock J, Randle E, Gillespie S, Barton G, Shaw RL (2018) Medication review plus person-centred care: a feasibility study of a pharmacy-health psychology dual intervention to improve care for people living with dementia. BMC Psychiatry 18 (1), 340)

Maidment ID, Shaw RL, Killick K, Damery S, Hilton A, Wilcock J, Barnes N, Brown G, Gillespie S, Fox C, Barton G, Iliffe S, Seare N (2016) Improving the management of behaviour that challenges associated with dementia in care homes: protocol for pharmacy–health psychology intervention feasibility study. BMJ Open 2016;6:e010279. doi:10.1136/bmjopen-2015-010279

Dementia and wellbeing

This research aims to support people with dementia to live well by promoting wellbeing, reducing stigma and improving care. Those of us who have the privilege to work with and support people with dementia and their families know well that people bring incredible courage, strength and resourcefulness to living with dementia. Dementia is a life limiting and progressive illness but it is possible to live well with dementia.

More information

This research focuses on what helps people to live well, and what strengths and capabilities people drawn on. We use positive psychology, the scientific study of positive experiences, states and traits, to help expand our understanding of living well with dementia. Our research is based firmly in people’s own lived experience and the idea that people with dementia are the experts on their lives and circumstances.

Project team

Dr Emma Wolverson

Chris Clark

Contact

Emma Wolverson e.wolverson@hull.ac.uk

Outputs

Pearson, M, Clarke, C & Wolverson, E., (2021). The meaning and experience of gratitude for people living with dementia. Submitted to Dementia. doi: 10.1177/14713012211040675. Epub ahead of print. PMID: 34461753.

Clarke, C., Woods, B., Moniz-Cook, E., Mountain, G., Øksnebjerg, L., Chattat, R., ... & Wolverson, E. (2020). Measuring the well-being of people with dementia: a conceptual scoping review. Health and quality of life outcomes, 18(1), 1-14.

Hickman, H., Clarke, C., & Wolverson, E. (2020). A qualitative study of the shared experience of humour between people living with dementia and their partners. Dementia, 19(6), 1794-1810.

Buggins, S. L., Clarke, C., & Wolverson, E. (2020). Resilience in older people living with dementia–A narrative analysis. Dementia, 1471301220927614.

Conway, L., Wolverson, E., & Clarke, C. (2020). Shared Experiences of Resilience Amongst Couples Where One Partner Is Living With Dementia—A Grounded Theory Study. Frontiers in Medicine, 7, 219.

Vince, A., Wolverson, E., Clarke, C (2017). The meaning and experience of well-being in dementia for psychiatrists involved in diagnostic disclosure: a qualitative study. International Psychogeriatrics, 29(1).

Wolverson, E., Clarke, C., & Moniz-Cook, E. D. (2016). Living positively with dementia: a systematic review and synthesis of the qualitative literature. Aging & mental health, 20(7), 676-699.

Clarke, C. & Wolverson, E. (2016) Positive Psychology Approaches to Dementia. Jessica Kingsley Publishers.

Wolverson, E., Clarke, C., & Moniz-Cook, E. (2010). Remaining hopeful in early-stage dementia: A qualitative study. Aging & Mental Health, 14(4), 450-460.

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