ACTIFCare: ACces to Timely Formal Care

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 home
care 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 lead
to 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.

Cross national comparison of health care systems, individual pathways to care and costs will provide insight that is essential for charting and benchmarking. The best-practice strategies as identified in this project can be integrated in existing European health and social care policies and guidelines and systems in order to enable national decision makers to make evidence based decisions when they reform the organisation of dementia care.

A critical aspect of the project is dissemination of its results to a wide audience. Communicating the message that there are effective ways of supporting people with dementia (PwD) in the community, awareness of barriers to effective care and ensuring cost-effectiveness of such care is essential to the success of the project. The target audiences for the ACTIF care dissemination effort are community care practitioners, the general public, national health services, patient advocacy groups as well as dementia researchers. Best practice messages will be communicated to the target audiences using a variety of means.

1. Developing a project website for the dissemination of the research findings and for internal discussions, including information to academia, industry, authorities, and the general public.
2. Drawing up a project press release.
3. Developing a project brochure, poster, and other awareness materials.
4. Organising meetings and briefings.
5. Closing conference

Website
The project website will be established at www.Actifcare.eu (or a similar domain name). Initially the website will contain synopses of key elements of the Description of Work for the project, describing the project's mission, the approach taken and the social innovation and societal value of the project, as
well as the project team. The website will be updated regularly, throughout the project's lifetime, with all partners being asked monthly to provide new material, and reviews of the site at every plenary meeting. Twitter and Facebook accounts will also be set up and managed throughout the project.

Materials & Distribution
The project brochure, poster, and other awareness materials will be created and circulated, both on paper and as downloads from the project website. Doctors and local health centres in all partner countries will be contacted directly and offered materials by post and/or for download. Alzheimer's and other dementia support groups across Europe will also be offered paper and electronic materials for distribution, to raise the public's awareness of the project's key messages.

Meetings and Briefings
We intend to organise a European expert "think-tank" towards the completion of the project, for which we will invite senior researchers and clinicians to engage with the research findings and discuss their potential application. In addition, in at least two of the participating countries we intend to set up a
translational panel, for which we will gather together senior service planners, policy makers, and experiential experts (PwD or their carers) and challenge them to discuss opportunities for applying the findings in their country. An edited version of the report of this panel will be made available on national
Alzheimer society websites and on the Alzheimer Europe website, with an invitation for members of the public to comment. The comments will be collated in a report.

Closing Conference
The ACTIF care project will host a conference in one of the partner institutions in month 35 of the project to discuss and present the work of the project. We will invite government agencies, healthcare providers and insurers, primary care organisations from each partner country, European dementia organisations (e.g. Alzheimer societies), and social innovators. The conference can expect good quality media coverage; press releases will also be issued in the other partner countries.