Going home? A study of capacity and best interests in people with dementia being discharged from hospital

A significant proportion of patients in an acute hospital is made
up of older people, many of whom have cognitive impairment or
dementia. Rightly or wrongly, if a degree of confusion is apparent,
it is often questioned whether the person is able to return to the
previous place of residence. We wished to understand how, on
medical wards, judgements about capacity and best interests with
respect to going home are made for people with dementia and
how decision-making around hospital discharge for people with
dementia and their families might be improved. Our research used
a ward-based ethnography. We observed, took detailed fieldnotes,
undertook in-depth interviews, reviewed medical records and held
focus groups. Themes and key issues were identified in 29 cases.
The research involved people with dementia (with and without
residence capacity), their relatives and a range of practitioners.
Our analysis highlights the complexity of judgements about
capacity and best interests in relation to decisions about place of
residence for people with dementia facing discharge from hospital.
Five key themes emerged from data: the complexity of borderline decisions;
the requirement for better understanding of assessment
approaches in relation to residence capacity; the need for better
documentation; the importance of narrative; and the crucial
relevance of time and timing in making these decisions.
In conclusion, we need: more support and training for practitioners, as
well as support for patients and families; clarity about the information
to be imparted to the person with dementia; more advocacy for
people with dementia; appropriate assessments embedded in routine
clinical practice; the patient with dementia to be centre-stage; and
properly resourced step-down or rehabilitation units to facilitate
timely and good decision-making about place of residence.