The Family Interventions iN Dementia Mental health Environments (FIND ME) Study
When a person living with dementia is admitted to a mental health ward it is often a time of crisis. For families, this can be an incredibly distressing time. Yet, despite their essential role, carers are too often excluded from care and decision-making. The FIND ME study, based at the Geller Institute of Ageing and Memory at the University of West London, aims to change that.
Funded by the NIHR Health and Social Care Delivery Research Programme, the FIND ME study is a UK wide mixed-methods programme of work, exploring how mental health services can better involve and support carers when a friend or relative with dementia is admitted to hospital. The project brings together researchers, clinicians, carers and people living with dementia to develop practical, co-produced strategies for change.
Why this research matters
Admission to a mental health ward can be necessary when features of a person’s dementia become unmanageable in community settings. ‘Mental health ward’ is the commonly used term in the UK, but we know this varies across Europe; these wards can also be referred to a ‘challenging behaviour unit’ – commonly used in France, or a ‘specialist dementia unit’ in the Netherlands.
Admissions to these wards are often accompanied by distress, guilt and a sense of disempowerment for families. Previous research shows that when carers are actively involved in care, outcomes improve: hospital stays are shorter, readmissions fewer, and the quality of care higher. Yet many carers describe being ‘kept in the dark’ – excluded from discussions, offered little information, and left feeling helpless and anxious.
The FIND ME Study responds to national calls from NHS England and the Department of Health and Social Care to strengthen collaboration between services, carers, and people with dementia. It seeks to address a critical evidence gap in understanding what best practice looks like for carer involvement in mental health wards.
What the study will do
Over 30 months, the FIND ME team is undertaking an multi-stage programme of research:
- National survey of mental health wards to map current service provision and approaches to carer support. Our survey is still open – we want every dementia mental health ward across the UK to take part in our short survey. If you work on a mental health ward please get in touch using the contact details below.
- Narrative interviews with carers (and where possible, people living with dementia) during and after admission, to explore changing needs and experiences over time.
- Ethnographic fieldwork in three NHS wards to observe everyday practices, staff-carer interactions and ward cultures.
- Experience-based co-design workshops bringing together carers, people with dementia and staff to develop evidence-based strategies for improvement.
- Feasibility testing of these strategies in real-world settings to ensure they are practical, acceptable and effective.
Throughout, Patient and Public Involvement (PPI) is embedded at every stage. The Inpatient Dementia Experience Group – made up of carers and people living with dementia – has shaped the study’s design, materials and data collection methods from the outset. Their input ensures that the research remains grounded in lived experience and directed towards meaningful change.
Co-design with people with lived experience
Central to FIND ME is its participatory ethos. Using Experience-Based Co-Design (EBCD), the team will work directly with people living with dementia, carers and ward staff to identify priorities and co-create practical solutions. This will lead to the development of freely available, multilingual resources including short films, podcasts, easy-read guides and training materials to support staff, carers and people with dementia.
These outputs aim to:
- Promote consistent and person-centred care practices on wards across the UK.
- Improve carer experiences and enhance communication between families and healthcare professionals.
A Collaborative future for dementia care
The FIND ME Study embodies the principles of INTERDEM: collaboration, inclusivity and the translation of research into real-world impact. By centring the voices of carers and people with dementia it seeks to reimagine how mental health wards can work with, rather than around, families.
The findings will inform service improvement, policy and training, contributing to a more compassionate and collaborative model of dementia care.
Want to find out more?
Email: findme.giam@uwl.ac.uk
Website: FIND ME Study
LinkedIn: FIND ME on LinkedIn