Informal Caregivers' Expectations and Experiences of Hospital Admission of a Relative with Dementia

This paper describes findings from a two-phase study undertaken in the UK by a multi-disciplinary research team.  111 pairs of people with dementia (PWD) and their family caregivers were recruited from patients referred to a specialist psychiatric liaison service in two English general hospitals. Data was obtained about their quality of life (QoL-AD and EQ5-D0), severity of dementia (MMSE), carer stress (GHQ), activities of daily living (I-ADL) physical illness and depressive symptoms (GDS), and economic data on care services and resources (Sheehan et al 2012).  These measures were repeated at six months and at twelve months where feasible. In the second phase caregivers whose relative was planned to be discharged to a long term facility were interviewed several times, the final interview took place about four months after the admission of the PWD to the facility (Katz et al 2013).  This paper focuses on a) caregivers’  observations whilst the PWD was in hospital and b) the process of choosing a facility.

Concurrently and retrospectively family caregivers gave detailed accounts of their relative’s care in hospital. They varied considerably in their assessment of the quality of care received, but many focused on the patient’s physical and mental deterioration during the hospital admission. Caregivers noted how their roles vis a vis their relative changed, and described their emotional and practical reactions to what they observed.  Most recounted a difficult process of being an ‘outsider’ to the care of their relative and feeling guilty and remorseful.

Caregivers described their experiences of having to choose a long term facility (often at short notice) with relatively little guidance from hospital or social services. This paper focuses on their perceptions of the conflicts caregivers face in endeavouring to provide protection for their relative whilst simultaneously carrying out their (filial) responsibilities.