Moving Beyond Traditional Research Models
Historically, technology for people with dementia has been developed in isolation from those who need it most. Research shows that current studies lacked meaningful involvement of people with dementia, family carers, and care professionals in the design of the technology¹. This disconnect has resulted in solutions that often fail to address real-world needs.
Our pilot study in Slovenia takes a different path, integrating user perspectives from the beginning through comprehensive, multidisciplinary research that connects oral health, cognitive function, and digital interventions.
A Unique Approach: Linking Oral Health and Cognitive Function
Our research addresses a critical but often overlooked connection: the relationship between oral health and cognitive decline. Evidence indicates that poor oral health, including periodontitis and tooth loss, may contribute to cognitive deterioration². By examining this connection through a co-creation lens, we’re developing interventions that participants help shape.
The study involves two key groups:
- Adults aged 40-75 who are relatives of dementia patients and may be at increased genetic risk Older adults (65+) experiencing subjective cognitive decline or mild dementia
- This dual approach allows us to develop both preventive strategies and supportive interventions, all guided by participant input and experiences.
Comprehensive Assessment Through Participant Partnership
Our pilot employs extensive evaluation methods, but what makes it unique is how participants contribute to refining these assessments:
Cognitive and Psychological Evaluations
Participants don’t just complete tests like the MMSE and CDR-SB; they provide feedback on the testing experience, helping us understand which assessments are most meaningful and least burdensome.
Oral Health Examinations
Beyond standard dental assessments, participants share insights about their oral hygiene challenges, helping us develop more practical interventions that acknowledge the realities of cognitive decline.
Digital Health Integration
Smart wristbands and cognitive training applications are continuously refined based on user feedback, ensuring they remain accessible as cognitive abilities change.
The Essential Role of Digital Literacy
The COVID-19 pandemic demonstrated that people with dementia can successfully adopt technology when properly supported. Research showed digital technologies proved a ‘lifeline’ of support during this period³. Our pilot builds on this insight by:
- Providing structured digital literacy training adapted to cognitive abilities
- Creating step-by-step guidance developed with participant input
- Adjusting pace and complexity based on individual progress
Participants have taught us that successful technology adoption isn’t about simplifying everything – it’s about finding the right balance between functionality and usability for each individual.
Creating Meaningful Engagement
Technology adoption requires personal relevance. Our pilot incorporates several strategies developed through participant feedback:
Cognitive Training That Respects Individual Preferences
The Eligence serious games platform used in our study adapts not just to cognitive ability but to personal interests and cultural background, based on extensive user consultation.
Maintaining Social Connections
Participants have emphasized the importance of technology for maintaining relationships. Video calling features and digital communication tools are integrated based on their specific suggestions about ease of use and meaningful connection.
Tracking Progress Together
Our approach to monitoring – through wearables and regular assessments – was redesigned based on participant input to focus on positive reinforcement rather than deficit tracking.
Continuous Feedback: The Heart of Our Methodology
Research emphasizes that future development should bring together people with dementia, family carers, care professionals and designers to coproduce digital technologies⁴. Our pilot embodies this principle through:
Regular Co-Design Sessions
Participants meet regularly with our research team to review progress, test new features, and suggest improvements. These aren’t token consultations – participant feedback directly shapes our interventions.
Iterative Development
When participants identify issues – whether it’s a confusing interface element or an uncomfortable assessment procedure – we make changes and test them together in the next session.
Cultural and Social Considerations
Our Slovenian context brings unique cultural factors that participants help us understand and address, from language preferences to family dynamics in caregiving.
Real-World Testing in Slovenian Communities
Our pilot tests the intervention where participants actually live and receive care. This is particularly important in Slovenia, where we’re seeing increasing demand for dementia care solutions. With nearly 40,000 Slovenians expected to be living with dementia by 2025, developing contextually appropriate solutions is critical.
Testing occurs in:
- Participants’ homes, where family dynamics and daily routines shape technology use
- Homes for older citizens, where we learn how to integrate digital solutions with existing care practices
- Community settings, where social and cultural factors influence adoption
Addressing Implementation Challenges
Through our pilot, we’ve identified and addressed several key barriers:
Language and Cultural Adaptation
All materials and interfaces are developed in Slovenian with input from participants to ensure cultural appropriateness and clarity.
Varying Digital Experience
We’ve learned to accommodate wide ranges of prior technology experience, from complete beginners to experienced users, adapting our training accordingly.
Integration with Existing Care
Participants and care providers help us understand how digital interventions can complement rather than complicate current care routines.
Measuring Impact Through Multiple Lenses
Our comprehensive approach evaluates success from multiple perspectives:
Clinical Outcomes
We track cognitive function, oral health improvements, and overall wellbeing using validated instruments, but participants help us understand what these numbers mean in daily life.
Quality of Life
Beyond clinical measures, participants share stories of how interventions affect their daily experiences, relationships, and sense of autonomy.
Caregiver Perspectives
Family members provide crucial insights about how digital tools affect their caregiving experience and family dynamics.
Building Capacity for the Future
Our pilot aims to create lasting change in how dementia care is approached in Slovenia:
Training Healthcare Providers
Healthcare professionals that enable the pilot are receiving continuous information about lessons learned from participants about effective support strategies.
Creating Sustainable Models
Participant feedback helps us design interventions that can be maintained beyond the research period, considering cost, complexity, and local resources.
The Path Forward
The integration of oral health and cognitive care, enhanced by digital technologies and shaped by user input, offers a promising approach to addressing Slovenia’s growing dementia challenge. More importantly, it demonstrates that people experiencing cognitive decline can be active partners in creating their own care solutions.
Effective dementia care technology emerges from genuine partnership. Our pilot study demonstrates that when research truly involves those it aims to serve, the results benefit everyone – from individual families to entire healthcare systems.
References
- Effectiveness of digital technologies to engage and support the wellbeing of people with dementia and family carers at home and in care homes: A scoping PMC. 2023.
- Evidence summary: the relationship between oral health and dementia. PubMed. 2018.
- Effectiveness of digital technologies to engage and support the wellbeing of people with dementia and family carers. PMC. 2023.
- Effectiveness of digital technologies: A scoping review. PMC. 2023.
**Article written by MFU, a key partner in the COMFORTage project.