Through their eyes: informal carers’ experiences of supporting a person with dementia on an NHS mental health inpatient ward

Abstract In the UK, when people with dementia are regarded as a risk to themselves or others, they are usually admitted compulsorily onto a National Health Service dementia inpatient ward, under the 1983 Mental Health Act. Remarkably little is known about the experiences of informal (family) carers supporting these individuals with dementia during their stay; this study is the first to explore those experiences. Qualitative, semi-structured interviews with 12 informal carers with a family member admitted to an NHS dementia inpatient ward in the Northwest of England were analysed. The reflexive thematic analysis identified 4 main themes – (1) Initial adjustment and transition; (2) Becoming a visitor; (3) Receiving support and sharing expertise; (4) Planning for the future – and 15 sub-themes. Some carers experienced traumatic events in the build-up to admission and felt overwhelmed, worried, guilty and stressed during the stay, whilst others felt relieved that the person with dementia was no longer at home. The ward environment was regarded as safe and practical, albeit ‘stark’. Staff care was seen as high-quality; carers appreciated support, when available, from a range of care staff and carer groups. Communication with ward staff was reported as ‘mixed’; positives were receiving information leaflets, attending ward rounds and having informal conversations with staff. Carers often felt excluded from future care planning. Preliminary suggestions for practice and policy recommendations include enhanced informal carer support during the admission, improved communication with ward staff, making the ward environment accessible and ‘homely’, and explaining staffing levels prior to admission.