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.

Aims: We examined whether Dementia Care Mapping (DCM) or the VIPS practice model (VPM) is more effective than education of the nursing home staff about dementia (control group) in reducing agitation and other neuropsychiatric symptoms as well as in enhancing the quality of life among nursing home patients. Methods: A 10-month three-armed cluster-randomized controlled trial compared DCM and VPM with control. Of 624 nursing home patients with dementia, 446 completed follow-up assessments. The primary outcome was the change on the Brief Agitation Rating Scale (BARS). Secondary outcomes were changes on the 10-item version of the Neuropsychiatric Inventory Questionnaire (NPI-Q), the Cornell Scale for Depression in Dementia (CSDD) and the Quality of Life in Late-Stage Dementia (QUALID) scale. Results: Changes in the BARS score did not differ significantly between the DCM and the control group or between the VPM and the control group after 10 months. Positive differences were found for changes in the secondary outcomes: the NPI-Q sum score as well as the subscales NPI-Q agitation and NPI-Q psychosis were in favour of both interventions versus control, the QUALID score was in favour of DCM versus control and the CSDD score was in favour of VPM versus control. Conclusions: This study failed to find a significant effect of both interventions on the primary outcome. Positive effects on the secondary outcomes indicate that the methods merit further investigation.

The model worked best in wards organised with a leading registered nurse who could support an auxiliary nurse holding the facilitating function.

Neuropsychiatric symptoms, apathy, severity of dementia, and impairment in activities in daily living are associated with reduced QOL in NH patients with dementia.

BackgroundPersons with dementia have described life in nursing home as difficult and lonely. Persons with dementia often reside in nursing homes for several years; therefore, knowledge is needed about how quality of life is affected in the nursing-home setting in order to be able to provide the best possible care. The aim of this study was to investigate the personal experience of living in a nursing home over time from the perspective of the person with dementia and to learn what makes life better or worse in the nursing home.MethodsA phenomenological hermeneutic research design was applied. Unstructured, face-to-face interviews and field observations were conducted twice, three months apart.ResultsTwelve persons residing in three different nursing homes were included. The analysis revealed four themes: “Being in the nursing home is okay, but you must take things as they are”; “Everything is gone”; “Things that make it better and things that make it worse”; and “Persons – for better or worse? Staff, family, and co-residents”.ConclusionsPersons with dementia are able to communicate their feelings and thoughts about their lives in the nursing home and can name several factors that have impacts on their quality of life. They differentiate between members of the staff, and they prefer their primary nurse. They are content with life in general, but everyday life is boring, and their sense of contentment is based on acceptance of certain facts of reality and their ability to adjust their expectations.