Risk management during healthcare transition: documenting the experience of persons living with dementia, caregivers, and healthcare professionals

Background: It is difficult for healthcare professionals to anticipate the risks and needs for assistance that may arise in the daily lives of persons living with dementia (PLWD) in the months following an hospital discharge. This study aimed to further understand the experience of PLWD, their family caregivers and healthcare professionals surrounding the prevention of adverse events during the transition from hospital to home.

 

Approach: This longitudinal qualitative multiple case study involved seven hospitalized PLWD, their caregivers, and their occupational therapists—both in hospital and at home. Fifty-four semi-structured interviews were conducted at three time points: just before discharge, six weeks after, and between three to six months post-discharge. Interview transcripts were thematically analysed using a coding grid focused on risk perception, risk management strategies, acceptability, and transition-related challenges.

 

Results: Results revealed that risk management during the hospital-to-home transition is a dynamic process aimed at maintaining a delicate balance to prevent adverse events. This process, marked by evolving challenges among stakeholders, involves: (1) determining the seriousness and acceptability of risks, (2) reflecting on potential strategies for risk management, and (3) taking actions to mitigate risks.

PLWD and their caregivers faced ongoing uncertainty, while caregivers struggled to balance safety and autonomy post-discharge, alongside relational tensions. Healthcare professionals encountered communication challenges during the discharge process, particularly in determining what information should be disclosed and when. Risks and support were generally more acceptable when aligned with PLWD’ and caregivers’ past habits and when perceived benefits outweighed potential harms.

 

Implications: This knowledge contributes to more appropriate care and services that meet the needs of PLWD and their caregivers, while helping to balance safety and autonomy. Findings highlight the importance of documenting the person’s perspective and understanding their view of “risky situations” by uncovering personal values, life stories, and expressed needs.

 

An open dialogue with the PLWD and their caregiver may help anticipate challenges associated with the return home and explore the relevance of their own strategies in addressing them. These insights align with positive risk-taking theories and suggest a potential paradigm shift toward shared risk decision-making in routine care.