Barriers and facilitators to the access to and use of formal dementia care: findings of a focus group study with people with dementia, informal carers and health and social care professionals in eight European countries

Abstract

BackgroundPeople with dementia and informal carers often access formal care late in the process of dementia. The barriers and facilitators to service use from the perspectives of different stakeholders involved are not well understood. Thus, we aimed to explore the barriers and facilitators of access to and utilisation of formal care from the perspectives of people with dementia, their informal carers and health and social care professionals.MethodFocus groups with people with dementia, informal carers and professionals were conducted in eight European countries. Recruitment targeted people with dementia, informal carers with experience of formal care and professionals involved in providing (access to) formal care. Qualitative content analysis using open coding was used on a national level. Cross-national synthesis was based on the translated national reports.ResultsOverall, 55 focus groups with 261 participants were conducted, involving 51 people with dementia, 96 informal carers and 114 professionals. Sixteen categories describing barriers and facilitators were identified, referring to three global themes: Aspects related to 1) individuals involved, 2) the system or 3) overarching aspects. The attitudes and beliefs of people with dementia and their carers may have a major impact, and they often serve as barriers. Formal care was perceived as a threat to the individual independence of people with dementia and was thus avoided as long as possible. A healthcare professional serving as a constant key contact person could be an essential facilitator to overcome these barriers. Contact should be initiated proactively, as early as possible, and a trusting and consistent relationship needs to be established. Beyond that, the findings largely confirm former research and show that barriers to accessing and using formal care still exist across Europe despite a number of national and European initiatives.ConclusionFurther investigations are needed to elaborate how the concept of a key contact person could be integrated with existing case management approaches and how the independence and autonomy of people with dementia can be strengthened when formal care needs to be accessed and used. These may be meaningful facilitators regarding enhanced access to formal care for people with dementia and their families.Electronic supplementary materialThe online version of this article (10.1186/s12877-018-0816-1) contains supplementary material, which is available to authorized users.

I becomes we, but where is me? The unity–division paradox when caring for a relative with dementia: A qualitative study

“…It was reassuring to note that our findings reflect those reported in a large European study (Stephan et al, ). We shared the findings with five people who had a relative with dementia (not interviewees).…”

“…We have several proposals for helping carers navigate the unity–division paradox and to maintain their personhood. A lack of continuity of care means that a key worker, like an AN, is essential for carers (Stephan et al, ), from the point of diagnosis, to establish an action plan and enable individuals to prepare for what might arise. This would include providing information about dementia upfront, with time available to address carers’ questions.…”

Optimizing access to and use of formal dementia care: Qualitative findings from the European Actifcare study

“…Various research methods were used, such as literature reviews, focus groups, expert interviews, cost‐consequence analyses and a cohort study (Kerpershoek et al, ) (see Figure ). The current individual interviews with people with dementia and their informal carers build on the results of the cohort study and of the focus groups (Stephan et al, ). In the quantitative part of the study, data were collected about service use, needs, quality of life and various other variables at baseline, six months and twelve months follow‐up.…”

Factors Influencing Emergency Care by Persons With Dementia: Stakeholder Perceptions and Unmet Needs

“…Health and service providers at the 2017/2018 National Research Summit on Dementia Care explicitly called for research to (1) “proactively support” PwD and to reduce the need for “reactive” medical services, (2) implement comprehensive models of care, and (3) validate the effects of different person‐centered care practices on the health and well‐being of PwD . Summit participants also called for additional research supporting informal caregivers' needs, as managing the complexities of dementia care, experiencing frustration, and coping with uncertainty about how to care for their loved one contribute to caregiver stress and burden …”