Barriers and facilitators to the use of personal information documents in health and social care settings for people living with dementia: a systematic review and thematic synthesis

Problem

People living with dementia (PLWD) experience communication difficulties. Personal information documents (PIDs), or healthcare passports, enable the collation and communication of information essential for the care of a person with dementia. Despite the potential for providing person-centred care, personal information documents are not ubiquitously used. The Capability Opportunity Motivation – Behaviour (COM-B) model can be used to understand factors determining individuals’ behaviour, such as use or non-use of clinical person-centred care tools. We aimed to identify the barriers to, and facilitators of, the use of healthcare passports for people living with dementia through a systematic review methodology.

Approach

A systematic search of six electronic databases was undertaken. Grey literature was also searched using three databases. Inclusion criteria included studies of all study types reporting barriers to or facilitators of the use of personal information documents in the care of adults living with dementia in high-income settings. Studies based in any setting and incorporating the perspective of any individuals who use, implement, or benefit from the healthcare passport. Studies were quality appraised using the NICE checklist. Following data extraction, thematic synthesis was used to develop descriptive themes, which were subsequently mapped to the COM-B framework.

Findings

Eighteen papers were included in the review, of which 11 detailed a single-component intervention and 7 described a PID as part of a multi-component intervention. Experiences were included from PLWD, carers, and healthcare professionals. Most studies evaluated their own PIDs but four studies evaluated the 'This is Me' developed by the Alzheimer's Society. A broad range of barriers and facilitators were identified within each COM-B domain. Themes included training, awareness, embedding the process in norms, and appreciating the value of the personal information documents. A key finding was that PIDs were valued by PLWD, carers, and HCPs. Experiences of PID use demonstrated benefits at multiple levels: PLWD received higher quality personalised care, carer stress was reduced, and HCP could provide better quality of care.

Consequences

This framework provides a starting point for evidence-informed initiatives to improve the use of personal information documents in the care of people with dementia. This review identified the importance of clarifying in advance the responsibility for the PID, the purpose and process for its use, including how to embed the PID within current work practices. Future research should consider the impact of the SARS-CoV-2 pandemic on the use of PIDs in dementia care, as visiting restrictions to care homes and hospitals have changed, and so the relative value of the PID may have changed. The impact of carer stress, HCP workload, organisational priorities during the pandemic may also have changed the use of PIDs in practice.