The Behaviours in Dementia Toolkit: A descriptive study on the reach and early impact of a digital health resource library about dementia-related mood and behaviour changes (Preprint)

Dementia is a syndrome with a high global prevalence that includes a number of progressive diseases of the brain affecting various cognitive domains such as memory and thinking, and the performance of daily activities. It manifests as symptoms across a number of domains, which often include significant mood and behaviour changes. Changed moods and behaviours due to dementia may reflect distress, they are highly varied, and may be stressful for both the person living with dementia and their informal and formal carers. To provide dementia care support specific to mood and behaviour changes, the Behaviours in Dementia Toolkit website was developed using human-centered design principles. The Behaviours in Dementia houses a user-friendly, digital library of over 300 free, practical and evidence-informed resources to help all care partners better understand and compassionately respond to behaviours in dementia so they can support people with dementia to live well. To determine whether the development and implementation of the Behaviours in Dementia Toolkit was successful in creating website users and to understand the platform’s early impact. A multi-method, descriptive study was conducted in the early post-launch period to examine reach, engagement, knowledge change, behaviour change, and website impact outcomes and measures via Google Analytics and an electronic survey of website users. From February 4 to March 31, 2024 there were 76,890 unique visitors to the Behaviours in Dementia Toolkit from 109 countries. Of 76,890 unique visitors to the Behaviours in Dementia Toolkit during this period, 16,626 were engaged users (21.6%) from 80 countries. The highest number of unique engaged users were from Canada (n=8,124) with an engagement rate of 37.7%. From March 5, 2024 to March 31, 2024, 100 electronic surveys were completed by website users and included in the analysis. Website users indicated that the Toolkit validated or increased their dementia-care knowledge, beliefs, and activities (82.0%) and they reported that the website validated their current care approaches or increased their ability to provide care (78.0%). Further, 77.0% of respondents indicated that they intend to continue using the Toolkit and 81.6% said they would recommend it to others to review and adopt. The Behaviours in Dementia Toolkit is a promising tool for sharing practical and evidence-informed information resources to support people experiencing dementia related mood and behaviour changes. Early evaluation of the website has demonstrated significant reach and engagement with users in Canadian and internationally. Survey data also demonstrated high ratings of website relevance, feasibility, intention to use, knowledge change, practice support, and its contribution to dementia guidance.