Access to timely formal care (Actifcare)

In absence of a cure that can alter the course of Neurodegenerative Disorders (NDD), an early diagnosis is important as it opens 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 by postponing nursing home placement. Despite these developments, research has revealed that approximately 40% of people with dementia (PwD) and their carers are not receiving services of the type and quality that they need. Reasons for this mis-match between need for, access to and use of formal care services has hardly been studied. This ambitious research proposal, uniting eight European countries (i.e. the Netherlands, Germany, the United Kingdom, Sweden, Norway, Ireland, Portugal and Italy) aims to better understand the reasons for inequalities in access to healthcare. At the macro level, we will assess and compare health care systems giving access to formal home care across Europe using literature review, expert consultation and focus groups. At the individual level, we will assess the access to and use of formal care services in people with dementia and their carers in the 8 EU countries, and examine how this relates to their (un)met needs and quality of life. 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. The aims of the Actifcare project are: 1) to better understand access pathways to formal care for PwD living in the community across Europe; 2) to identify factors that determine the appropriateness of timely access to formal community services at macro and individual levels; 3) to analyse costs and consequences of access pathways to formal home care; 4) to evaluate the utility of two recently developed patient and carer outcome measures in support of this (i.e. the ICECAP-O and CarerQol); and 5) to develop and promote best-practice strategies. Overall methodology: To achieve the above aims, the work plan consists of six work packages (WPs). Work package 1 comprises the overall project management. WP2 involves a review of access pathways to formal home care, based on literature review, expert consultation, and focus groups. In WP3 a European cohort study will be performed to examine the predisposing and enabling factors in relation to access to formal care, needs and quality of life in community dwelling dementia patients and their carers. A cost–consequences analysis, based on the clinical and economic data assessed in the cohort study, will be performed in WP4. WP5 focuses on the identification of good-practice pathways to access formal care and the development of best-practice strategies, in terms of costs and consequences. WP6 concerns the public awareness of the project, dissemination of the results to relevant stakeholders, including national political decision makers, and providing implementation support, dissemination of best-practice strategies, and initialisation of a ‘platform’ for research and advocacy regarding economic evaluations of dementia care across Europe. A mix of methods will be used, including literature review, expert consultation, focus groups, quantitative clinical assessments, qualitative research and a cost-consequence analysis. This combination of methodologies will provide information at different levels and will ensure the credibility, validity, and generalisability of the data. The theoretical Anderson model will be used to assess the potential inequity of access to and utilisation of services in Europe, by identifying associations between service use and a broad spectrum of predisposing and enabling variables, while controlling for need. To date it is not clear to what extent the (in)equity in which services are accessed and delivered influences the quality of life of patients and their carers, and whether this differs between countries. This type of information is very important for our understanding of existing social and health systems and will provide the basis for subsequent initiatives. The ultimate goal of Actifcare is to optimize the care for people with moderate to severe dementia in Europe by finding the right balance between individual needs and appropriate health care use.