Perspectives of policy and political decision makers on access to formal dementia care: expert interviews in eight European countries

Background As part of the ActifCare (ACcess to Timely Formal Care) project, we conducted expert interviews in eight European countries with policy and political decision makers, or representatives of relevant institutions, to determine their perspectives on access to formal care for people with dementia and their carers. Methods Each ActifCare country (Germany, Ireland, Italy, The Netherlands, Norway, Portugal, Sweden, United Kingdom) conducted semi-structured interviews with 4–7 experts (total N = 38). The interview guide addressed the topics “Complexity and Continuity of Care”, “Formal Services”, and “Public Awareness”. Country-specific analysis of interview transcripts used an inductive qualitative content analysis. Cross-national synthesis focused on similarities in themes across the ActifCare countries. Results The analysis revealed ten common themes and two additional sub-themes across countries. Among others, the experts highlighted the need for a coordinating role and the necessity of information to address issues of complexity and continuity of care, demanded person-centred, tailored, and multidisciplinary formal services, and referred to education, mass media and campaigns as means to raise public awareness. Conclusions Policy and political decision makers appear well acquainted with current discussions among both researchers and practitioners of possible approaches to improve access to dementia care. Experts described pragmatic, realistic strategies to influence dementia care. Suggested innovations concerned how to achieve improved dementia care, rather than transforming the nature of the services provided. Knowledge gained in these expert interviews may be useful to national decision makers when they consider reshaping the organisation of dementia care, and may thus help to develop best-practice strategies and recommendations. Electronic supplementary material The online version of this article (doi:10.1186/s12913-017-2456-0) contains supplementary material, which is available to authorized users.


Introduce the ActifCare Project, aims and background
The ActifCare Project is a European dementia research project, and is part of the EU Joint Programme -Neurodegenerative Disease Research (JPND). A total of 8 European countries take part in this ambitious project. The project aim is to analyse the pathways to care for people with dementia and their families, in an attempt to better understand barriers and facilitators in access to healthcare. We are especially interested in formal services that are provided for people in the middle stages of dementia living at home, such as day care and home support rather than services such as nursing homes. Our project work included analysing literature as well as conducting qualitative group interviews with people with dementia, their carers, and health care professionals in all 8 countries. In addition, we are currently conducting a survey to repeatedly assess the needs of people with dementia and their carers over one year.

Explain what we expect from the expert
We invited you as an expert because you are in a unique position to be influential in dementia care. We expect you possess relevant knowledge and experience on how to influence larger structures and processes and what changes in the overall system are necessary. We invite you to share your professional experience with us, but also to enter into a conversation about innovative ideas, beyond what is already known.

Explain the global themes
In the interview, we would like to address selected topics that we identified as common themes in many project countries in focus groups with people with dementia, their carers as well as health care professionals. We would like to discuss with you the topics "A: Complexity and continuity of care", "B: Formal Services for a heterogeneous group of people with dementia", and "C: Public awareness". 2

A: Complexity and continuity
First, let's talk about the topic Complexity and continuity of the dementia care system.
Our interviews with people with dementia and their carers indicated that complexity and lack of continuity of the dementia care system may impede access to and utilisation of necessary services. Complexity refers to e.g. many different types of services and many different ways to access services that may be available and appropriate. Lack of continuity refers to e.g.
disjointed and fragmented services, or the absence of a key contact person or institution.
In your expert opinion, what has to happen to enable people with dementia and their carers to better navigate the complexity of the system and to improve the continuity of the system for people with dementia and their carers?

B.1: Formal Services for people in the middle stages of dementia living at home
Now we would like to talk about Services for people in the middle stages of dementia living at home.
In our interviews with people with dementia and their carers we found that they would like to see a greater consideration of social needs in addition to physical needs. E.g. day care services are often considered as being for people in need of care, in advanced stages of the disease, or are considered to be exclusively oriented to older people, and are therefore not utilized.

In your expert opinion, what should be done to provide this group with appropriate
formal services?

B.2: Formal Services for other groups with special needs
In our focus group interviews we also identified special needs for the group of… [refer to your country's "special needs group(s)" as an example].
How can appropriate formal services be created for groups with special needs? 3

C: Public awareness
Our next topic will be Public awareness concerning dementia. This refers to societal attitudes towards dementia and towards people with dementia, which may influence the ways of coping with the disease and the utilisation of help and services.
In your opinion, how does the public perceive dementia and people with dementia?
How can public awareness be effectively targeted?

Suggestions for additional questions, if original answer of the expert is not sufficient (for all 3 topics):
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Last question
To conclude we ask you to share your vision of the ideal dementia care system with us.
Imagine you could redesign the existing system. How would you shape the dementia care system to optimize access to care?
Are there any aspects you feel are important but we haven't talk about yet?