Working in a gray area—Healthcare staff experiences of receiving consent when caring for persons with dementia

Background Every person has the right to autonomy, and to be involved in decisions about their care. When persons with dementia have difficulties in expressing what they want, their autonomy is challenged. Staff should strive to involve the person in care decisions, to obtain consent and to avoid the use of coercion and restraints. However, care without consent exists and coercion and restraints are being used. In order to improve care, further knowledge is warranted. Aims The purpose of this study was to explore staff’s experiences of obtaining consent when caring for persons with dementia. Methods In total 14 focus group interviews were conducted with staff with experience of dementia care who work in either home care or residential care in Sweden. An inductive qualitative content analysis was used to analyze the collected data. Results Three categories were generated describing staff experiences of consent in dementia care: the person as the decision-maker, the staff as the decision-makers, and the viability of the consent. Overall, staff found it difficult to know if they really had consent from the individual. Even if the person verbally gave consent, it was challenging to know if the person really understood what they had consented to. Common to all three categories was the significance of the relationship between the person with dementia and staff: getting to know the person, recognizing the person’s response in terms of their facial expressions and body language as well as being able to explain and justify specific actions to the person. Conclusion Staff need better conditions in dementia care, including training and time to reflect on how to obtain consent. A person-centered approach can be one way to develop care and ensure that persons with dementia are allowed autonomy and to share in making decisions.