Is increased carer knowledge of the health care system associated with decreased preventable hospitalizations for people in the community diagnosed with dementia? A systematic review protocol.

BACKGROUND: People living with dementia (PLWD) are admitted to hospital twice as often as those without dementia, for ambulatory care sensitive conditions (ACSC) that could have been managed in ambulatory and primary care settings. PLWD are at greater risk of poor outcomes during and following hospital admission. Compared to those without dementia, they are almost twice as likely to die in hospital and two to three times more likely to experience an adverse event. Although some hospitalizations are clinically necessary, there may be a proportion related to ACSC that could be potentially avoided with additional support and education for PLWD and their carers. This study aims to assess the effectiveness of interventions focused on reducing avoidable hospitalization for PLWD by supporting carers to manage the health care needs of the PLWD, via improved awareness and understanding of health and the healthcare system.

METHOD: Scientific and gray literature will be searched using a combination of keywords pertaining to dementia, caregivers, education, and support. Included studies will involve community-dwelling PLWD and caregivers, with interventions aimed at improving carer's understanding of the healthcare system and ability to manage the caregiving role. The primary outcome will be hospitalization related to the PLWD and secondary outcomes will be carer burden, stress, wellbeing, and quality of life. All study designs will be considered. Data from included studies will be analyzed using descriptive statistics and content analysis. If the data permits, we will perform a meta-analysis and subgroup analyses, related to the intervention and participant characteristics.

DISCUSSION: This review will provide a comprehensive picture of the knowledge available on the subject and identify knowledge gaps in existing literature. The findings may highlight the lack of existing interventions for PLWD and their carers who live in the community and will help stakeholders to identify needs and develop programs targeted to carers and care recipients that prevent avoidable hospitalization for PLWD.

SYSTEMATIC REVIEW REGISTRATION: PROSPERO number: 49655 .