ACTIFCare: ACces to Timely Formal Care

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In the absence of a cure that can alter the course of the Neurodegenerative Disorders, including the dementias, an early diagnosis is widely agreed to be important. Early diagnosis is seen as opening the way to future care and treatment, and can help people take control of their lives and plan ahead. Many EU countries have now adopted strategies to promote timely recognition of dementia. Timely access to dementia care services, such as home care, is also important for reducing health care costs, for example by postponing placement in a nursing home. Despite these developments, individuals are often not receiving services of the type, quality and timing that they need. This proposal aims to better understand the reasons for inequalities in access to healthcare. We will assess and compare health care systems giving access to formal homecare across Europe using literature review, expert consultation and focus groups, to provide an overview of policies, services and systems.At the individual level, we will assess the access to and use of formal care services by people with dementia and their carers in 8 EU countries, and examine how this relates to their (un)met needs and quality of life. A cohort of 400 people with dementia and their carers will be recruited across the 8 countries, and followed up for 12 months. In addition, costs, consequences and novel specific outcome measures will be evaluated. This will leadto the identification of best-practice pathways to formal care, in terms of efficiency and cost-effectiveness.This project will generate knowledge on best-practice with regards to an important stage of the dementia care pathway where there is great potential to impact positively upon quality of life in the short and long term.