Access to timely formal dementia care in Europe: protocol of the Actifcare (ACcess to Timely Formal Care) study

Background: Previous findings indicate that people with dementia and their informal carers experience difficulties
accessing and using formal care services due to a mismatch between needs and service use. This mismatch causes
overall dissatisfaction and is a waste of the scarce financial care resources. This article presents the background and
methods of the Actifcare (ACcess to Timely Formal Care) project. This is a European study aiming at best-practice
development in finding timely access to formal care for community-dwelling people with dementia and their
informal carers. There are five main objectives: 1) Explore predisposing and enabling factors associated with the use
of formal care, 2) Explore the association between the use of formal care, needs and quality of life and 3) Compare
these across European countries, 4) Understand the costs and consequences of formal care services utilization in
people with unmet needs, 5) Determine the major costs and quality of life drivers and their relationship with formal
care services across European countries.
Methods: In a longitudinal cohort study conducted in eight European countries approximately 450 people with
dementia and informal carers will be assessed three times in 1 year (baseline, 6 and 12 months). In this year we will
closely monitor the process of finding access to formal care. Data on service use, quality of life and needs will be
collected.
Discussion: The results of Actifcare are expected to reveal best-practices in organizing formal care. Knowledge
about enabling and predisposing factors regarding access to care services, as well as its costs and consequences,
can advance the state of the art in health systems research into pathways to dementia care, in order to benefit
people with dementia and their informal carers.
Keywords: Dementia, Formal care, Service use, Needs
Abbreviations: Actifcare, ACcess to Timely Formal Care study; CANE, Camberwell assessment of need for the
elderly; CarerQol, Care related quality of life scale; CDR, Clinical dementia rating; DEMQOL, Dementia quality of life;
HADS, Hamilton anxiety and depression scale; IADL, Instrumental activities of daily living; LSNS-6, Lubben social
network scale; MMSE, Mini mental state examination; NPI-Q, Neuropsychiatric inventory; PAI, Positive affect index;
PSMS, Physical self-maintenance scale; QOL-AD, Quality of life- Alzheimer’s disease scale; RSS, Relative stress scale;
RTCP, Right time place care; RUD, Resource utilisation in dementia instrument; SOC-13, Sense of coherence