Supporting Family Caregivers in Dementia Disclosure
Prof. Howard Haochu Li
Prof. Howard Haochu Li from the Sau Po Centre on Ageing, Department of Social Work and Social Administration at HKU is leading a groundbreaking research initiative titled “Laying the Groundwork for a Theoretically Grounded and Research-Based Applet to Support Family Caregivers in Dementia Disclosure.” This study addresses the critical challenges faced by caregivers of people with dementia (PwD) while aiming to fill significant research gaps in underrepresented regions like Hong Kong and the Greater Bay Area. By employing a rigorous, user-centred approach, Prof. Li's research aspires to create a lasting impact on caregiver support.
Dementia disclosure is a critical, under-researched care phase, especially in Hong Kong and the Greater Bay Area amid rising needs. Effective communication regarding the condition can lead to enhanced decision-making and coping mechanisms for both caregivers and PwD. However, the mechanisms that facilitate this process remain poorly defined, highlighting the need for interdisciplinary tools to bridge these gaps. Prof. Li's research investigates caregivers' experiences, challenges, and needs in dementia disclosure across various domains: provider interactions, disclosing to PwD, and self-care, hypothesising mediated effects on self-care.
At the core of this initiative is the development of a digital applet designed to evaluate and support caregivers during the disclosure process. This applet is framed within a realist context, utilising the Context-Mechanism-Outcome configuration (CMOc) to understand how different factors interact to influence caregiver experiences. The study employs a mixed-methods approach that includes systematic reviews, qualitative interviews with both family caregivers and professionals, thematically analysed, and psychometric testing for reliability and validity using established scales (such as SWD, CSES, ZBI, and CES-D).
Technological Development
The applet's technological advancements position it as a potential game-changer in Assistive Technology (AT) for the elderly. By incorporating user-centred design principles, the applet aims to evolve into a comprehensive tool that goes beyond basic functionality. Features may include interactive decision-making aids and coping strategy trackers tailored to caregivers' needs. Unlike other dementia care apps that focus solely on cognitive stimulation, this applet could pioneer disclosure-specific functionalities, such as simulated conversation scripts or need-based alerts, to bridge gaps in medical support systems. Future iterations might even utilise artificial intelligence to further personalise user experiences, adapting to caregiver feedback loops identified in the study's CMOc framework.
Integration with Broader AT Ecosystems
A pivotal aspect of Prof. Li's research is its potential integration with existing assistive technologies. By creating a holistic ecosystem where the applet interfaces with in-home sensors or wearables that monitor PwD's vital signs post-disclosure, caregivers can receive vital information about PwD's well-being. This integration could enhance smart home systems that adjust environments to minimise agitation during adaptation phases, thereby fostering a supportive space for both caregivers and PwD. Recent studies indicate that in-home technologies can significantly alleviate caregiver burdens, making this integration not only beneficial but essential for promoting "ageing in place."
User-Centred Validation and Usability
User-centred validation is crucial to ensure that the applet is accessible and effective. Drawing from comprehensive methodologies, including cognitive interviews and pilot testing, the research emphasises the importance of evaluating usability across diverse caregiver demographics. This angle focuses on assistive technologies’ (AT) need for rigorous, inclusive validation to ensure accessibility and reduce abandonment. Understanding how factors such as caregiver identity—spouse versus adult child—impact applet adoption can lead to designs that minimise digital literacy barriers and encourage sustained use.
In conclusion, Prof. Li's research presents a promising avenue for transforming dementia disclosure from a barrier into an enabler of active ageing. By addressing caregiver needs through innovative technology, this study not only aims to enhance caregiver resilience but also sets the stage for a healthier, more participatory ageing society. If successful, the applet could evolve into a hybrid tool that benefits both caregivers and PwD, paving the way for scalable, evidence-based interventions in dementia care.