Family Interventions iN Dementia Mental Health Environments

NCT06937541 | Recruiting

• 1 other identifier: NIHR161439
• Study Type: observational
• Target: 343
• Locations: 1 country
• Sites: 1

Brief Summary

Study Goal: Understand carers' needs when someone with dementia is in a mental health ward and develop strategies to support carers as partners in care. Research Questions:

• What are mental health wards like in terms of staff, patients, and current carer support?
• What do carers experience and need during admission, discharge, and beyond?
• How do ward routines and staff practices affect carer involvement?
• How can co-design turn research into practical strategies for carer support?
• Can these strategies be implemented effectively? Method: The investigators will survey mental health wards nationwide, interview carers from three UK wards, observe ward practices, and talk to staff. They will use this information to create and share practical strategies to improve carer support across the UK.

Conditions

Carers; Dementia

Keywords

family carers; dementia; inpatient unit; mental health; family interventions

Outcome Measures

Primary Outcomes (7)

• A national survey to map current care provision for people living with dementia admitted to a mental health ward across the UK

  National mapping survey to gather data on the number/type of wards, patient and staff demographics and existing care provision for people living with dementia who are detained under the Mental Health Act and receiving care on a mental health ward.

  6 months

• Ethnographic observations to understand how carers are supported and involved in the care of their friend/relative with dementia receiving care on a mental health ward

  Ethnographic observation of staff and family carers on the ward. The focus of the observations is on the organisation of care. Observations will take place from the corridor(s) of wards, in communal areas, typically at nursing stations or ward observation points. Short, 'in-situ' conversational interviews (around 5-10 minutes) will take place on the ward with staff. These will be unstructured conversations to capture 'in-the-moment' experiences. Observations and 'in-situ' conversations will be documented using a touch screen tablet device.

  1 year

• Interviews with current carers to understand their experiences and involvement in the care of their friend/relative with dementia who is receiving care on a mental health ward

  Interviews with carers across 3 NHS sites in the UK, who currently have a friend/relative with dementia receiving care on a mental health ward (8 carers per ward = 24 carers in total). Carers will be interviewed at 3 timepoints over 12 months to understand their experiences over time. Total number of interviews = 72. The sample of carers will be identified by ward managers. A semi-structured interview schedule will be used following a narrative interview approach.

  1 year

• Interviews with discharged carers to understand their experiences and involvement in the care of their friend/relative with dementia who had previously received care on a mental health ward

  Interviews with 'discharged' carers across 3 NHS sites, i.e. carers whose friend/relative with dementia had previously received care on a mental health ward and have been discharged from the ward within the last 3 years. 8 carers per ward = 24 interviews in total. The sample of carers will be identified via screening of ward records completed by ward managers at each ward. A letter and Participant Information Sheet (PIS) will be sent by post to invite discharged carers to participate in an interview. A semi-structured interview schedule will be used to capture their views and experiences.

  1 year

• Interviews with ward staff to understand their experiences of supporting and involving carers in the care of their friend/relative with dementia receiving care on a mental health ward

  Interviews with ward staff, such as nurses, healthcare assistants, psychiatrists across 3 NHS sites. 5 ward staff per site will be interviewed = 15 interviews. Ward staff will be identified in collaboration with ward managers. A semi-structured interview schedule will be used to capture their views and experiences.

  1 year

• Focus groups with staff to assess the feasibility (acceptability, implementation, integration, relevance) of implementing co-designed strategies in practice

  Focus groups with staff to address: i) acceptability, to what extent these strategies reflect current practice, constraints, and the potential for new approaches; ii) implementation, to what extent they can be successfully delivered; iii) integration, to what extent they can be integrated into routine practice iv) relevance and acceptability of the outputs created for PLWD, carers and families. Three online focus groups of 8-10 participants (n=30) will provide opportunity for discussion to explore the structural and organisational barriers within wards that may facilitate or impede effective implementation.

  6 months

• Acceptability of co-designed strategies and resources

  PLWD, carers and families will be invited to share their perspectives around acceptability of the co-designed resources in a way that suits them most. This is a person-centered, inclusive approach to gathering feedback, where different approaches are paramount to suit different needs. People with lived experience could share their feedback by annotating printed or electronic versions of documents, having a brief conversation with the researcher online, over the phone or in person via the researcher attending their PPI meetings.

  6 months

Study Arms (5)

Ward managers of dementia mental health wards

Ward managers of mental health wards that provide specialist care to patients with dementia will be invited to participate in a UK-wide, national mapping survey. One ward manager per ward is required to complete survey. Ward managers from NHS trusts and private providers will be invited to participate. There are approximately 90 NHS wards and 20 private providers in the UK (e.g. Cygnet Health Care, the Priory Group, Elysium Health Care, and St Andrew's Healthcare). Target recruitment goal of survey completion is 50% = 55 ward managers in total.

Co-design study participants

Co-design workshops will be conducted with people living with dementia (n=10) and carers (n=10), and staff (n=10) working on mental health wards, to translate the findings into evidence-based strategies and collaboratively shape service improvements to address user needs and enhance care.

Feasibility study participants

People living with dementia (n=30), carers (n=30) and staff (n=30) will be recruited to test the feasibility of resources and interventions, co-designed to improve carer support, involvement and staff training.

Family carers

Interviews will be conducted with family carers whose friend/relative has received care on a dementia mental health ward (recruitment will take place across 3 wards). The investigators will interview current carers (8 per ward, total = 24) at 3 time points over 1 year. They will be carers of patients with dementia currently receiving care on a mental health ward. The investigators will also interview carers whose friend/relative has been discharged from a mental health ward within the last 3 years (8 per ward, total = 24). People with dementia receiving care on mental health wards are usually in the advanced stages of dementia and very distressed. However, there may be some who have the capacity to consent and if they wish, will be supported in taking part in dyadic interviews with their carer.

Health care professionals working on a dementia mental health ward

Ethnographic observations will be conducted of staff working on dementia mental health wards. These will be focused on how staff interact with, support and involve family carers in the decisions of the care of their friend/relative with dementia receiving care on the ward. In-situ ethnographic interviews (5-10 mins reciprocal conversations) with ward staff will take place during observations to explore what staff draw on to inform their interactions and support with carers, how they recognise carers needs and what informal and embedded rationales used in decision making inform their involvement with carers. Staff to take part in longer (30-60 min) interviews (5 per site, total = 15) will be identified in collaboration with ward managers. The sample will include staff from a range of disciplines and roles.

Eligibility Criteria

• Sex: all
• Healthy Volunteers: Yes
• Age Groups: Child (0-17), Adult (18-64), Older Adult (65+)
• Sampling Method: Non-Probability Sample

Study Population

People living with dementia, their carers and staff working on the mental health wards

You may qualify if:

• Ward managers of mental health wards that provides care to PLWD
• Ward managers from NHS wards that provides care to PLWD
• Ward managers from private providers that provides care to PLWD
• Ward managers that work on organic or mixed wards that provides care to PLWD

You may not qualify if:

• Functional older adult mental health wards that do not provide care to PLWD
• Staff members who are not the ward manager
• Longitudinal interviews with current carers
• Family member (any relationship) or friend of a PLWD currently receiving care on a mental health ward
• Aged 18 years old or above
• Has capacity to consent to participate in an interview
• Willing to take part in 3 interviews over 12 months
• The carer is actively involved in a safeguarding investigation.
• The carer is under 18 years old
• The carer does not have capacity to consent to participate in an interview
• Interviews with discharged carers
• Family member (any relationship) or friend of a PLWD discharged from the ward within the last 3 years
• Aged 18 years old or above
• Has capacity to consent to participate in an interview
• Willing to take part in an interview

Sponsors & Collaborators

• University of West London: lead
• University of Cambridge: collaborator
• University of Exeter: collaborator

Study Sites (1)

Geller Institute of Aging and Memory, University of West London

London, W5 5SA, United Kingdom

RECRUITING

Related Publications (3)

• Edmans BG, Wolverson E, Dunning R, Slann M, Russell G, Crowther G, Hall D, Yates R, Albert M, Underwood BR. Inpatient psychiatric care for patients with dementia at four sites in the United Kingdom. Int J Geriatr Psychiatry. 2022 Feb;37(2). doi: 10.1002/gps.5658. Epub 2021 Dec 1. No abstract available.

  PMID: 34850970 BACKGROUND

• Wolverson EL, Harrison Dening K, Dunning R, Crowther G, Russell G, Underwood BR. Family experiences of inpatient mental health care for people with dementia. Front Psychiatry. 2023 Mar 1;14:1093894. doi: 10.3389/fpsyt.2023.1093894. eCollection 2023.

  PMID: 36937714 BACKGROUND

• Wolverson E, Dunning R, Crowther G, Russell G, Underwood BR. The Characteristics and Outcomes of People with Dementia in Inpatient Mental Health Care: A Review. Clin Gerontol. 2024 Oct-Dec;47(5):684-703. doi: 10.1080/07317115.2022.2104145. Epub 2022 Jul 27.

  PMID: 35897148 BACKGROUND

Related Links

• URl for the FIND ME Study Website

MeSH Terms

Conditions

Dementia; Psychological Well-Being

Condition Hierarchy (Ancestors)

Brain Diseases; Central Nervous System Diseases; Nervous System Diseases; Neurocognitive Disorders; Mental Disorders; Personal Satisfaction; Behavior

Study Officials

• Prof Emma Wolverson, DClinPsy

  University of West London

  PRINCIPAL INVESTIGATOR

Central Study Contacts

Prof Emma Wolverson, DClinPsy

CONTACT

02082094277; emma.wolverson@uwl.ac.uk

Study Design

• Study Type: observational
• Observational Model: OTHER
• Time Perspective: OTHER
• Sponsor Type: OTHER
• Responsible Party: PRINCIPAL INVESTIGATOR
• PI Title: Professor

Study Record Dates

• First Submitted: March 21, 2025
• First Posted: April 22, 2025
• Study Start: May 29, 2025
• Primary Completion (Estimated): March 31, 2027
• Study Completion (Estimated): May 31, 2027
• Last Updated: June 13, 2025

Record last verified: 2025-06

Data Sharing

• IPD Sharing: Will share

Locations

GB (1)