Family Interventions iN Dementia Mental health Environments (FIND ME)

Aims: To understand carer experiences when a person with dementia is detained within a mental health ward, and staff rationales and responses to carers. The goal is to develop co-designed, evidence-based strategies that enhance the involvement and support of carers in mental health wards, ultimately improving patient outcomes.

Background: Mental health wards play a crucial role in caring for people with dementia. Within every NHS Mental Health Trust, specialist dementia wards care for the most unwell and vulnerable individuals, detained for their own safety and that of others. Despite the existence of around 100 mental health wards for people with dementia in the UK, little is known about their care quality.

Admission to these wards is often associated with psychological trauma for both people with dementia and their carers, long stays (averaging 100 days), and high rates of institutionalisation.

We know that involving carers - informal, unpaid carers who look after a family member, friend or partner with dementia - can directly improve patient outcomes. However, there are currently no evidence-based interventions to support carers of people with dementia admitted within mental health wards.

Design: A mixed methods study utilising a convergent parallel mixed methods design, integrating a national mapping survey (online questionnaire), interviews (longitudinal narrative), ethnography (observation, interviews, document analysis), experience-based co-design (co-production of outputs) and feasibility (focus groups). Family systems theory supports the potential for developing interventions to improve outcomes for people with dementia, carers and family in the context of crisis. A relational framework recognises different configurations of care and family.

Methods: (1) to understand current support for carers we will conduct a national mapping survey (online questionnaire) to identify the characteristics of UK mental health wards for people with dementia and current carer support.

Within 3 wards, serving inner-city, coastal, rural, and semi-rural communities with significant health and social care needs:

(2) to understand carer needs and experiences we will (a) conduct longitudinal narrative interviews with carers, including people with dementia where possible, who are currently detained in mental health wards. We will interview eight participants per site, across three sites, totalling 24 participants. These interviews will be conducted three times over 12 months, resulting in a total of 72 interviews.

Additionally, we will (b) conduct narrative interviews with carers, and where possible, people with dementia, who have been discharged from these mental health wards within the last three years. This will involve eight carers per site, across three sites, totalling 24 interviews.

(3) to understand ward cultures and staff perspectives we will collect ethnographic data (observation, interviews, document analysis) within each site over 30 days per ward (3 wards, total: 90 days/shifts of observed practice). Mixed methods analysis will be:

(4) translated using co-design (9 workshops) to empower carers, families, people with dementia, and ward staff across the UK to collaboratively identify good practice and design improvements to services.

(5) feasibility of implementation within mental health wards will be assessed by staff, carers, and people with dementia across the UK.

Timeline: Pre-work: REC, governance; data collection: survey (months 1-12), interviews (months 1-18), ethnography (months 1-18): translation into co-deigned outputs (months 18-24); assessment of feasibility (months 25-30).

Impact and dissemination: We will translate our findings into co-designed, open-access resources in accessible formats including films, podcasts, downloadable documents, and audiobooks. These resources will be, disseminated to all mental health wards via our community of practice and professional bodies. In addition, we will collaborate with Dementia UK, John’s Campaign, and TiDE to ensure carers have access to these resources.