Prevention and preparedness for missing episodes in the care of persons living with dementia in Sweden - a document study.

BACKGROUND

People living with dementia are more vulnerable, which increases the risk of harm during a missing episode. Although national guidelines exist for dementia care there are no specific standards for preventing, managing, or following up on missing episodes among people living with dementia in care settings. This study aimed to describe and analyse current local documents and checklists used in elderly care and home care services in Swedish municipalities, focusing on prevention and preparedness for missing episodes, and to identify key areas for improvement.

METHODS

A multiple document case study was conducted using materials from one county council and eight municipalities, including care homes and home care services, examining instructions, checklists, and routines for situations where a person living with dementia is at risk of going missing or has gone missing, one or several times.

RESULTS

Findings revealed substantial gaps in all participants documents, particularly regarding the updates of the documents, lack of preventive measures except technical solutions, delays of police notification due to inadequate instructions in case of a missing incident, limited understanding of risks and of police procedures as well as insufficient collaboration, Moreover, the decision to contact the police could be delayed for several hours and, in some cases, even days. Neither the resident nor their next of kin were actively involved in any preventive activities or risk assessments.

CONCLUSIONS

Local guidelines and checklists in Swedish elderly- and home care services demonstrated substantial deficiencies in the prevention and preparedness of missing episodes involving persons living with dementia. Fundamental elements of preparedness were also lacking, including knowledge‑based collaboration with the police. Taken together, the findings suggest that admission to elderly care with exclusive emphasis on voluntariness and freedom does not necessarily increase safety for persons living with dementia. Safety and person‑centred care should be understood as mutually reinforcing rather than competing objectives.

CLINICAL TRIAL NUMBER: Not applicable.