Connected Care
Living with young-onset dementia is complex and has a profound impact not only on the person affected but also on their loved ones. The consequences of the diagnosis and the condition are felt across many areas of life – socially, financially, physically, psychologically, emotionally, and spiritually.
Through the Connected Care project, we aim to explore how the expertise gained from earlier research on stress, anxiety, and sleep problems can be made available and applicable in the home setting of people with young-onset dementia. Strengthening the connection between care settings in psychosocial support – particularly in reducing anxiety, stress, and sleep disturbances – is highly valuable. It enables more seamless transitions between different forms of care and support by:
- Expanding the role of (semi-)residential care through enhanced competencies, allowing care providers to take on a service-oriented role in both residential and home settings (e.g., through liaison or bridge functions)
- Aligning this expertise with the needs and expectations of the home environment, including informal caregivers and family members.
Connected Care: Building Bridges Between (Semi-)Residential Care and Home-Based Support in Addressing Anxiety, Stress, and Sleep Problems in People with Young-Onset Dementia
Numerous studies show that young-onset dementia significantly reduces quality of life and well-being. The context and care needs of people with young-onset dementia often differ from those of older individuals with dementia. Younger people with dementia are still actively engaged in society. As a result, the impact on their lives and those around them is substantial – not only medically, but also socially and financially (e.g., work, children, mortgage payments, etc.). The disease causes tension in personal life, emotional stress, and sleep disturbances. Previous research indicates that care providers do not always feel competent or equipped to address these issues (anxiety, stress, and sleep problems) with people with young-onset dementia or their informal caregivers.
Surveys among informal caregivers show that they too struggle to address themes such as anxiety, stress, and sleep problems with their loved ones. These issues are not limited to people with young-onset dementia who are already in (semi-)residential care. Previous research shows that such problems often emerge during the prodromal phase and gradually intensify over time. As a result, the physical and emotional burden on the home environment – including informal caregivers, partners, families, neighbors, and formal home care providers – also increases significantly.
The Connected Care project aims to adapt the expertise and tools developed in earlier research on stress, anxiety, and sleep problems, making them practically applicable in the home setting of people with young-onset dementia.
Connected Care poster and pitch
Julie Vanderlinden, Liza Musch, and Sophie Dohogne have already conducted extensive research on the topic of young-onset dementia. In this project, they aim to explore how the expertise gained on stress, anxiety, and sleep problems from previous studies can be made accessible and applicable in the home setting of people with young-onset dementia.
Download the Connected Care poster and discover their pitch!
