Sammendrag på engelsk (abstract):
This paper reports on qualitative data from the Actifcare study investigating experiences,attitudes, barriers and facilitators concerning access to and use of formal care.A total of 85 semi‐structured in‐depth interviews were conducted in eight European
countries. Results were analysed with a deductive content analysis, first within country and then integrated in a cross‐national analysis. Overall, analysis of the in‐depth interviews revealed two major themes with five subcategories. The results can be
summarised in an optimal pathway for access to dementia care. This pathway includes fixed factors such as disease‐related factors and system‐related factors. In addition there are personal factors that are subject to change such as attitudes towards care. An important finding consisted of the necessity of having sufficient information about the disease and available care and having a key contact person to guide you.Dementia is a progressive syndrome, with symptoms affecting cognition,behaviour and the ability to carry out activities of daily living.As the disease progresses, an increasing amount of care is needed.Nowadays, the use of home care for people with dementia is encouraged.In an ideal situation for society, needs would first be covered by informal care, until formal community services become necessary and it will then complement informal care. There are several services that can be offered at home,such as help with personal care, day care or nursing care (so‐called formal care).Previous research has shown that people often do not use the amount and type of services that they objectively need .Different barriers have been described, but peculiarly,many carers mention that they do not use services because they simply feel it is not necessary.This is often regretted in later stages, where carers indicate that they would now prefer to have used services in an earlier stage, also known as the early stage needs paradox.Another reason for non‐use is experiencing difficulties in accessing suitable services. People trying to access formal care experience this process as difficult and time‐consuming.Informal carers express the need for better advice and support in this process of accessing formal care. In a society where it is encouraged to live in the community as long as possible, it is important that there are as few barriers as possible in accessing care.
Health and social care in the community, 2019