The autonomy of demented patients: interviews with caregivers

A Norberg University of Umea, Sweden Tape-recorded semi-structured interviews were conducted with 21 nursing aides and enrolled nurses in the geriatric clinic in Umea, Sweden. The interviews focused on the difference between the care ofdemented and non-demented patients and ethical conflicts in dementia care. The results indicate that caregivers have problems in providing the demented patients with opportunities to act autonomously in everyday matters on the ward, mainly due to the difficulty ofunderstanding what the patients wish and the fact that their wishes, when understood, often seem irrational. Measures to provide the demented patients with more opportunities to act autonomously in everyday matters are suggested. Demented patients gradually lose their ability to make their own decisions as their cognitive impairment increases. This leads to ethical problems in care. Several articles have discussed how to make decisions about such life and death matters as, for instance, when to stop feeding severely demented patients (1,2). There have been discussions whether physicians should act paternalistically in the patient's best interest or whether they should be guided by respect for the patient's past autonomy (3,4,5,6). Although modern nursing philosophy emphasises the importance of patient participation and shared goals, Wilson-Barnett (7) states that it quite often happens that caregivers in the care ofthe elderly act for the benefit of the patients without their consent or even against it. This statement is in accordance with our personal experience. It seems important to understand circumstances leading to neglect of patient autonomy in dementia care. An unpublished observation study of time consumption in a geriatric clinic revealed that most caregivers spent less time with demented than with non-demented patients with the same Activity of Daily Living (ADL) state (8). It seems reasonable to suspect that the reason for this time difference was that caregivers did not spend sufficient time trying to communicate with demented patients to enable them Key words Autonomy; dementia; communication; nursing; ethical conflicts. to learn how to respect their autonomy. The aim of this study was to investigate whether problems of communication with demented patients contributed to neglect of patient autonomy