DEMDATA: The Austrian-Czech institutional long term care project - design and protocol of a two-centre cross sectional study.

BACKGROUND: The organization of long-term care is one of the main challenges of public health and health policies in Europe and worldwide, especially in terms of care concepts for people with dementia. In Austria and the Czech Republic the majority of elderly institutionalized persons with dementia are cared for in nursing homes. It is however unclear, how many persons living in nursing homes in Austria and in the Czech Republic are suffering from cognitive impairment and dementia. In addition, basic information on the nutritional status, the status of mobility and the medication prescription patterns are often missing. To facilitate new effective and evidenced based care concepts, basic epidemiological data are in urgent need. Thus, DEMDATA was initiated to provide important basic data on persons living in nursing homes in Austria and the Czech Republic for future care planning. METHODS: DEMDATA is a multicentre mixed methods cross-sectional study. Stratified and randomly drawn nursing homes in Austria and the Czech Republic are surveyed. The study protocol used in both study centres assesses four different domains: a) Resident, b) Care team, c) Relative and d) Environmental Factors. Resident's data include among others health status, cognition, dementia, mobility, nutrition, behavioural symptoms, pain intensity and quality of life. A minimum of 500 residents per country are included into the study (N = 1000 residents). The care team is asked about the use of the person-centred care and their burden. The relatives are asked about the number of visits and proxy-rate the quality of life of their family member. All staff employed in the nursing homes, all residents and relatives can voluntary take part in the study. The environmental factors include among others the organisational category of the nursing home, number of residents, number of rooms, social activities and the care concept. The project started in March 2016 and will be concluded in February 2018. DISCUSSION: DEMDATA will provide important epidemiological data on four different nursing home domains in Austria and the Czech Republic, with a focus on the prevalence of dementia in this population. Thereby supplying decision and policy makers with important foundation for future care planning.

Professional Care Team Burden (PCTB) scale - reliability, validity and factor analysis.

BACKGROUND: There is growing concern about how to provide care for persons with dementia in institutions such as nursing homes, day care centers, mobile services and hospitals. Care teams (formal caregivers) have to meet specific expectations from different sides: the Person with Dementia herself, the institution, and from different family members. Out of this situation, considerable burden can emerge hindering the professional development of care team members and counteracting quality of care of care recipients. So far there are very few specific reliable and valid scales measuring burden in care team members. Based on the theoretical concept of subjectively perceived burden, organizationally based factors of burden and structural factors of burden, we report on the construction of a care team burden scale and its scale quality criteria. METHODS: Based on the theoretical three assumed sources of burden, a structured interview guide was developed. Interviews were held with professional caregivers. Through qualitative data analysis, an item pool consisting of 40 Items was constructed. Experts selected 19 items found most appropriate to measure the three theoretically based domains of burden. The Perceived Stress Scale (PSS) was chosen as a criterion in order to test discriminant validity. An exploratory factor analysis was performed. RESULTS: The stepwise scale analysis revealed a 10 item solution. The Cronbach's alpha was 0.785. The Pearson correlation between the PCTB 10 Item scale (mean score 10.2, SD = 5.0) and the PSS (mean score 13.0, SD = 5.9) was 0.46 (p < 0.001). All included items could clearly be assigned to one of three factors. CONCLUSION: The 10 item PCTB scale provides a valid and reliable means of obtaining ratings of burden from formal care teams working in nursing homes in order to evaluate different interventions targeted at the reduction of burden in care teams.

Dementia service centres in Austria: A comprehensive support and early detection model for persons with dementia and their caregivers - theoretical foundations and model description.

Despite the highly developed social services in Austria, the County of Upper Austria, one of the nine counties of Austria had only very limited specialized services for persons with dementia and their caregivers in 2001. Support groups existed in which the desire for more specialized services was voiced. In response to this situation, funding was received to develop a new structure for early disease detection and long term support for both the person with dementia and their caregivers. This article describes the development of the model of the Dementia Service Centres (DSCs) and the successes and difficulties encountered in the process of implementing the model in six different rural regions of Upper Austria. The DSC was described in the First Austrian Dementia Report as one of the potential service models for the future.