Family Interventions iN Dementia Mental Health Environments (FIND ME)

University of West London

Status: Enrolling

Conditions: Carers; Dementia

Study type: Observational

Funder types: Other

Identifiers

NCT06937541

NIHR161439 (Other Grant/Funding Number)

Details and patient eligibility

About

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.

Full description

Background and rationale

Mental health wards (MHW) are a significant site of care for people living with dementia (PLWD), providing care for the most unwell, vulnerable, and high-risk individuals who are detained under the Mental Health Act (1983) for their own safety and the safety of others.

The UK has around 100 MHWs (80 NHS, 20 private) for PLWD, but there's a lack of evidence on care quality and experiences. Stays average 100 days, with most PLWD moving to institutional care rather than returning home.

Admissions often follow severe psychiatric or behavioural issues, such as self-harm or assaults. This population is at high risk to themselves and others, with high acuity and comorbidity. Admissions are complex, involving frequent unscheduled transfers to general hospitals, which are associated with high rates of falls and hospital-acquired infections.

Carer involvement can significantly improve clinical and social outcomes for people in mental health wards by reducing length of stay, promoting earlier discharge, and lowering relapse and readmission rates. Carers provide essential support that staff may not, ensuring person-centred care, advocacy, decision-making support, treatment adherence, and promoting recovery. However, carers often feel marginalized and describe MHWs as a place of 'battle,' experiencing high levels of trauma and distress with unmet emotional, social, and financial needs. Reviews and inquires highlight a culture that views carers as problematic and resource-intensive, leading to their support needs being overlooked.

There is an absence of research examining carer perspectives of MHWs and no evidence-based interventions to support carers of PLWD who are admitted within MHWs. In response, this study responds to urgent calls from the Department of Health and Social Care and NHS England, for partnership working with carers and families utilising co-production to develop effective interventions and training programmes to support carers and the guidance required by services and wards to support implementation.

Research question: How can MHWs effectively work in partnership with and support family carers of PLWD?

Aim and Objectives

This study will provide detailed understandings of carers experiences and involvement when PLWD are detained within a MHW, and staff rationales and responses to carers, throughout an admission. It will deliver new knowledge and evidence-based strategies co-designed to ensure carers are appropriately supported and involved and to improve patient outcomes.

Objectives:

1. To deliver a detailed description of staffing structure, patient profiles, and current support for carers and families in MHWs for PLWD.
2. Provide detailed understandings of carers' experiences, perspectives of involvement, and their support needs throughout a PLWD MHW admission, during transition, and following discharge.
3. Understand ward organisational cultures and staff perspectives by examining (a) ward routines and practices that involve or exclude carers (b) staff understandings and recognition of carers needs, and (c) formal frameworks and informal rationales staff draw on to inform involvement or exclusion from decision making, care, and transition to discharge.
4. Translate the findings using co-design into evidence-based strategies to support best practice in the involvement and support of carers.
5. (a) Assess the feasibility of implementing these strategies in practice and (b) gather feedback from people with lived experience

Design

This mixed methods study uses a convergent parallel mixed methods design integrating a national mapping survey, interviews, ethnography and experience-based co-design and feasibility testing. This approach supports the collection of detailed data from multiple and contextualized perspectives, with the goal to improve healthcare systems.

The study uses family systems theory and the Family Adjustment and Adaptation Response Model (FARR) to understand family responses to stress, such as dementia and mental health admissions. It also incorporates anthropology and sociology theories to explore family and kinship in care contexts and how healthcare professionals and MHWs recognize and respond to families. This combined approach aims to understand carers' and families' experiences and how to best support them during MHW admissions.

Enrollment: 343 estimated patients

Sex: All

Volunteers: Accepts Healthy Volunteers

Inclusion and exclusion criteria

Survey

Inclusion Criteria:

• 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

Exclusion Criteria:

• 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

Inclusion criteria:

• 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

Exclusion criteria:

• 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

Inclusion criteria:

• 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

Exclusion criteria:

• 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 People Living With Dementia (PLWD)

Inclusion criteria:

• PLWD currently under the care of the mental health ward
• PLWD discharged from the care of a dementia mental health ward within the last 3 years
• Has capacity to give informed consent to taking part in an interview
• Willing to take part in an interview alongside their carer

Exclusion criteria:

• The PLWD is actively involved in a safeguarding investigation
• The PLWD does not have capacity to consent to participate in an interview
• The PLWD is not willing to take part in an interview alongside their carer
• The PLWD has been discharged from the care of a dementia mental health ward for more than 3 years

Co-design study - PLWD and carers

Inclusion criteria:

• PLWD who may, or may not, have experience of dementia mental health wards
• Carers (family members or friends) of PLWD who may, or may not, have experience of dementia mental health wards
• Willing to talk about mental health and dementia
• Aged 18 years old or above
• Have capacity to give informed consent

Exclusion criteria:

• Participants who do not have experience of living with, or caring for someone with, dementia
• Not willing to talk about mental health and dementia
• Aged under 18 years old
• Does not have capacity to give informed consent

Co-design study - staff

Inclusion criteria:

• Members of staff working within mental health wards for PLWD
• Members of staff of any professional group in a role that involves contact with carers (e.g. health care assistants, nurses, occupational therapists, psychologists, physiotherapists, speech and language therapists, family therapists, psychiatrists etc)
• Members of staff of any pay band or grade
• Students on placement in a mental health ward
• Members of staff working on NHS or private wards

Exclusion criteria:

• The staff member is actively involved in a safeguarding investigation
• Members of staff that do not work within mental health wards for PLWD

Feasibility study - PLWD and carers

Inclusion criteria:

• PLWD
• Carer (family or friend; current or bereaved)
• Willing to review outputs related to mental health wards
• Aged 18 years old or above
• Capacity to consent to take part

Exclusion criteria:

• The participant (PLWD or carer) is actively involved in a safeguarding investigation.
• Is not willing to review outputs related to mental health wards
• Aged under 18 years old
• Does not have capacity to consent to take part

Feasibility study - staff

Inclusion criteria:

• Members of staff working within mental health wards for PLWD
• Members of staff of any professional group in a role that involves contact with carers (e.g. health care assistants, nurses, occupational therapists, psychologists, physiotherapists, speech and language therapists, family therapists, psychiatrists etc)
• Members of staff of any pay band or grade
• Students on placement in a mental health ward
• Members of staff working on NHS or private wards

Exclusion criteria:

• The staff member is actively involved in a safeguarding investigation
• Members of staff that do not work within mental health wards for PLWD

Trial design

343 participants in 5 patient groups

Ward managers of dementia mental health wards

Description:

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

Description:

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

Description:

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

Description:

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

Description:

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.