There are an estimated 14,000 to 17,000 young people with dementia in the Netherlands. They have different forms, such as Alzheimer’s disease, vascular dementia, frontotemporal dementia and Lewy body dementia. If the first signs of dementia occur before the age of 65, people fall into the category of early-onset dementia. The disease presents differently than in older people with dementia; For example, in many young people, Alzheimer’s disease does not start with memory problems – as in the elderly – but with behavioural changes and speech problems. Frontotemporal dementia is also more common in young people.
The YOD-CARE project
The YOD-CARE project addresses important psychosocial research questions included in the ‘Young-onset Dementia Research Agenda’, issued by the Dutch Young-onset Dementia Knowledge Center (KC).
Young-onset dementia (YOD) has been appointed an intersecting theme in the Dutch National Dementia Strategy, because of the difficulties that people with YOD and their families face during the different phases of the disease trajectory. In doing so, the Dutch Ministry of Health has called for a broad focus to gain knowledge about the personal needs and preferences of people with YOD and their family members in all phases of the disease trajectory, develop family oriented psychosocial interventions and explore how age-appropriate care and support can best be organised to support YOD families to live well with dementia.
The project aims to improve diagnostic and post-diagnostic care and support, as well as the connection and transitions between different types of care and support throughout the caregiving trajectory, and its accessibility.
YOD-CARE is part of YOD-INCUDED and one of the consortia of the Dutch National Dementia Strategy, as part of Dementia Research Program from the The Netherlands Organisation for Health Research and Development (ZonMW).
YOD-INCLUDED connects stakeholders from a scientific, clinical, and societal perspective for people with Young Onset Dementia. ‘INCLUDED’ stands for the inclusive character of the research.
The ultimate goal is to enhance care, diagnosis and create a clinical cohort for people with Young Onset Dementia. YOD-INCLUDED aims for patient\orchestrated recognition, diagnosis, prediction, care needs and prevention of Young Onset Dementia. With a strong focus on patient involvement and on communication and dissemination of results to society, YOD-INCLUDED builds towards a future for a family- and person-centred approach for people with Young Onset Dementia. In addition, they will also address care and support at different stages of the disease process which will entail tailored combinations of hereditarily factors, diagnostics, care and lifestyle interventions.