Periodic Reporting for period 1 - HOMEDEM (Co-designing a Home with Dementia)
Reporting period: 2022-10-01 to 2024-09-30
The HOMEDEM project is a Marie Skłodowska-Curie Actions Innovative Training Network dedicated to training eight early-stage researchers in design and dementia caregiving. The project aims to address the growing need for home-based care for people with dementia (PwD) across Europe. Informal caregivers, often family members or friends, play a crucial role in supporting PwD at home. They provide a range of care, from emotional support to complex medical tasks.
HOMEDEM focuses on understanding and addressing the challenges faced by PwD and their informal caregivers at multiple levels:
• Micro-level: Examining the impact of dementia on relationships between PwD and their caregivers, and developing strategies to strengthen these bonds.
• Meso-level: Exploring the evolving needs of home living environments and developing interventions to support PwD and their caregivers.
• Macro-level: Analyzing care ecosystems and identifying opportunities for innovative, personalized, and sustainable care models.
By equipping researchers with interdisciplinary skills, HOMEDEM aims to develop innovative solutions that improve the quality of life for PwD and their caregivers. The project seeks to influence the design and implementation of community-based care services, products, and tools that are tailored to the specific needs of individuals with dementia.
HOMEDEM focuses on understanding and addressing the challenges faced by PwD and their informal caregivers at multiple levels:
• Micro-level: Examining the impact of dementia on relationships between PwD and their caregivers, and developing strategies to strengthen these bonds.
• Meso-level: Exploring the evolving needs of home living environments and developing interventions to support PwD and their caregivers.
• Macro-level: Analyzing care ecosystems and identifying opportunities for innovative, personalized, and sustainable care models.
By equipping researchers with interdisciplinary skills, HOMEDEM aims to develop innovative solutions that improve the quality of life for PwD and their caregivers. The project seeks to influence the design and implementation of community-based care services, products, and tools that are tailored to the specific needs of individuals with dementia.
A comprehensive literature review has been conducted to explore the social needs of people with dementia, and interviews are being prepared to further investigate these needs. Additionally, intensive collaboration is underway to define key concepts such as personhood, dignity, and autonomy, which will serve as the foundation for developing new interventions and support services. Research is being conducted into the impact of the home environment on people with dementia, with a focus on understanding the needs and experiences of both the person with dementia and their caregivers. The concept of "feeling at home" is also being explored, examining the relationship between this feeling and concepts such as dignity, autonomy, and identity. Furthermore, research is being conducted into nighttime restlessness in people with dementia, using both quantitative and qualitative methods. Research is also being conducted into how autonomy, personhood, and citizenship are supported in dementia care across different countries and at various levels. The doctoral candidates are collaborating to develop decision-making tools for people with dementia and their caregivers to enable shared decision-making about care. Additionally, work is underway to develop interventions aimed at promoting autonomy, personhood, and citizenship for people with dementia.
The HOMEDEM project has made significant strides in advancing the field of dementia care. Key results and potential impacts include:
- Innovative Research Methods: The project has pioneered the use of participatory and co-creative research methods, involving people with dementia and their caregivers in the research process. Despite attempts to collaborate with as many people with dementia as possible, recruitment remains challenging. Therefore, further research with larger samples and a broader range of participants is necessary. Feedback from all DCs indicates that finding participants is a common difficulty.
- New Insights into Dementia Care: HOMEDEM has generated valuable insights into the social needs, living environments, and care experiences of people with dementia. Demonstrations and further user tests are necessary to fully understand the potential of the designed guidelines, prototypes, protocols, and tools in various contexts. The HOMEDEM research focuses on the home context of people with dementia. Additionally, it could be investigated in which other contexts (when people with dementia live in a care facility or independently) the designs can be used and what adaptations are required. By further internationalizing the consortium, it can also be investigated which adaptations are necessary to extrapolate research outcomes to other cultures and countries.
- Development of Innovative Interventions: The project has developed innovative tools and interventions to support people with dementia and their caregivers, such as decision-making aids and home environment adaptations. The project's interventions should be scaled up and adapted to different contexts and cultural settings. Further research is needed to test and evaluate the prototypes and conceptual outcomes of the research (e.g. conceptual tool for monitoring the nighly agitation of PwD) Long-term evaluation studies can assess the sustainability and impact of the interventions.
- Policy Influence: The project's findings have the potential to influence healthcare policies and guidelines, leading to improved support for people with dementia and their caregivers. Continued efforts are needed to disseminate the project's findings to a wider audience, including policymakers, healthcare professionals, and the public. A supportive regulatory and standardization framework can contribute to the success of the policy guidelines on dementia care. In this way, the research outcomes can also influence policy at a macro level. Additional resources and actions are needed to improve standards and care traditions. Policymakers should be encouraged to adopt and implement the project's recommendations to improve dementia care systems. Supportive policies and funding mechanisms can encourage further innovation and the commercialization of innovative solutions.
- Innovative Research Methods: The project has pioneered the use of participatory and co-creative research methods, involving people with dementia and their caregivers in the research process. Despite attempts to collaborate with as many people with dementia as possible, recruitment remains challenging. Therefore, further research with larger samples and a broader range of participants is necessary. Feedback from all DCs indicates that finding participants is a common difficulty.
- New Insights into Dementia Care: HOMEDEM has generated valuable insights into the social needs, living environments, and care experiences of people with dementia. Demonstrations and further user tests are necessary to fully understand the potential of the designed guidelines, prototypes, protocols, and tools in various contexts. The HOMEDEM research focuses on the home context of people with dementia. Additionally, it could be investigated in which other contexts (when people with dementia live in a care facility or independently) the designs can be used and what adaptations are required. By further internationalizing the consortium, it can also be investigated which adaptations are necessary to extrapolate research outcomes to other cultures and countries.
- Development of Innovative Interventions: The project has developed innovative tools and interventions to support people with dementia and their caregivers, such as decision-making aids and home environment adaptations. The project's interventions should be scaled up and adapted to different contexts and cultural settings. Further research is needed to test and evaluate the prototypes and conceptual outcomes of the research (e.g. conceptual tool for monitoring the nighly agitation of PwD) Long-term evaluation studies can assess the sustainability and impact of the interventions.
- Policy Influence: The project's findings have the potential to influence healthcare policies and guidelines, leading to improved support for people with dementia and their caregivers. Continued efforts are needed to disseminate the project's findings to a wider audience, including policymakers, healthcare professionals, and the public. A supportive regulatory and standardization framework can contribute to the success of the policy guidelines on dementia care. In this way, the research outcomes can also influence policy at a macro level. Additional resources and actions are needed to improve standards and care traditions. Policymakers should be encouraged to adopt and implement the project's recommendations to improve dementia care systems. Supportive policies and funding mechanisms can encourage further innovation and the commercialization of innovative solutions.