There are currently 46,8 million persons living with dementia worldwide [
1]. Alzheimer Europe estimates that there are currently 145.431 persons with dementia living in Austria and 143.309 in the Czech Republic [
2]. A rapid and continuous growth in an aging population [
3] suggests that these numbers will double every 20 years [
1]. This also entails an increase in persons living in nursing homes. Even though, there is a political plan to increase community care over institutional care, [
4] the need for institutional Long term Care (iLTC) will remain over the next years. The organization of long-term care (LTC) including iLTC is one of the main challenges of public health and health policies in Europe [
5‐
7] and worldwide [
1], especially in terms of care concepts for people with dementia [
8,
9]. The majority of elderly institutionalized persons from Austria and the Czech Republic with dementia living in iLTC are cared for in nursing homes. It is unclear however, how many persons living in nursing homes in Austria and in the Czech Republic are suffering from cognitive impairment and dementia. Studies conducted in other European countries produced diverse prevalence results. For example, in a large Swedish Study with 4831 studied nursing home residents, the prevalence of cognitive impairment was 67% [
10]. In another study performed in nursing homes in Ireland, 58% percent had a dementia diagnosis. 31.8% had no medical dementia diagnosis but scored in clinical tests within the range of possible dementia, resulting in a total prevalence of 89.8% [
8]. Considering the low diagnosis rate in some Austrian regions for home dwelling persons with dementia, the percentage of undiagnosed persons living in Austrian nursing homes may even be higher in some Austrian institutions [
11]. Since an appropriate diagnosis is necessary for attending to the special medical and health care needs of this population, [
9,
12] there is an urgent need for basic epidemiological data. The substantial increase of persons with dementia in nursing homes and the increased awareness of the needs of persons with dementia raises several challenges and requires either adaptations to current care practices or the development of alternative care concepts. Various approaches, most of them based on the concept of person-centred care [
13] have been considered, but no convincing advantages of one care model over another could be found so far [
14‐
16]. The results of different studies suggest a multifactorial approach to the development of specialized care models for persons with dementia, taking needs of residents, care teams and family members as well as environmental and psychosocial factors into account [
17,
18]. The complex care needs associated with dementia in the different disease stages [
10] lead to a higher care dependency, resulting in an increased stress and burden level in care teams [
4,
19‐
21]. Testad et al. [
22] found a positive correlation between behavioural symptoms and staff burden. A study in the Netherlands demonstrated how behavioural symptoms correlate with multiple environmental and social factors such as number of persons living in a unit, staff/patient ratio, the presence of a walking area and possibilities of social contact [
23]. There is growing evidence that, even among those working in specialist dementia services, the proportion of staff receiving dementia care training is low [
24‐
26]. Although dementia is an important topic in elderly long- term care, there are other important issues, such as infections [
27] falls [
28], pain management [
29,
30] and the health status in general. There is also little knowledge on the potential for the improvement of medical services and the application of non-pharmacological therapies. The therapeutic nihilism in these environments is known to a certain extent but the potential has rarely been explored [
31]. The lack of reliable information on these issues, as well as factors influencing the burden and stress of the care team is hindering the development of new innovative and cost effective care concepts [
4].
DEMDATA was initiated to provide important basic data on persons with dementia living in nursing homes in Austria and the Czech Republic for future care planning. The goal of DEMDATA is to collect epidemiological data on four domains: a) Resident, b) Care team, c) Relative and d) Environmental Factors. This paper describes the main components of the DEMDATA study design, the study protocol for the quantitative data collection and the data management plan. The protocol for the qualitative data collection process will be described in a separate publication.