Data of a sub-analysis of the DEMDATA study: characteristics of Austrian and Czech nursing homes residents.

OBJECTIVES: The aim of this data paper is to provide the data set of a sub-analysis of the DEMDATA study data. In the DEMDATA study, epidemiological data on the prevalence and severity of dementia, as well as functioning, behavioral problems and other health related factors in residents living in Austrian and Czech nursing homes were collected. The DEMDATA project further provides information on relatives' perception of the life Quality of residents, care team burden as well as environmental factors. Participating nursing homes were randomly drawn and stratified. Inclusion criteria for participation were that the resident was living permanently in the institution and that he/she and/or a legal representative (where relevant) had signed an informed consent. DATA DESCRIPTION: This paper provides data of cognitive, functional and behavioral assessments as well as other health related information of 1085 residents living in Austrian and Czech nursing homes. For each resident, several measurements on his or her cognitive, functional, and behavioral status are available. Also further health-related factors such as quality of life, pain, numbers of falls and hospital stays are provided.

Consensus statement of the International Summit on Intellectual Disability and Dementia on valuing the perspectives of persons with intellectual disability.

The International Summit on Intellectual Disability and Dementia covered a range of issues related to dementia and intellectual disability, including the dearth of personal reflections of persons with intellectual disability affected by dementia. This article reflects on this deficiency and explores some of the personal perspectives gleaned from the literature, from the Summit attendees and from the experiences of persons with intellectual disability recorded or scribed in advance of the two-day Summit meeting. Systemic recommendations included reinforcing the value of the involvement of persons with intellectual disability in (a) research alongside removing barriers to inclusion posed by institutional/ethics review boards, (b) planning groups that establish supports for dementia and (c) peer support. Practice recommendations included (a) valuing personal perspectives in decision-making, (b) enabling peer-to-peer support models, (c) supporting choice in community-dwelling arrangements and (d) broadening availability of materials for persons with intellectual disability that would promote understanding of dementia.

Cognitive status and use of analgesics and anxiolytics in residents of nursing homes in the Czech Republic.

BACKGROUND: The treatment of pain and treatment of anxiety are two of the most complex issues in nursing homes worldwide, mainly because of the large numbers of people with cognitive impairment who reside in this environment. AIM: The aim of this study was to investigate the administration of analgesics and anxiolytics to people living in nursing homes, taking into account cognitive status. METHODS: For this cross-sectional study, we used data from 404 residents who lived in nine randomly selected nursing homes in the Czech Republic and participated in the Czech-Austrian Long-Term Care Research Project called DEMDATA. Information about medication administration was obtained from medical records. Cognitive impairment was evaluated by the Mini-Mental State Examination, and pain was measured by the Pain Assessment in Advanced Dementia. To measure anxiety, we used the Behavioral Pathology in Alzheimer's Disease Rating Scale in residents with severe-to-moderate dementia and also the standardized questionnaire EuroQol in other residents. RESULTS: In all, 68% (95% CI 62-74) of residents with pain did not receive any analgesic medication and 31% (95% CI 25-38) of residents were administered some analgesics and continued to report pain. The lowest reported occurrence of pain, as well as the lowest prevalence of analgesic administration, was in residents with moderate-to-severe dementia. We found that an alarming percentage of residents in the nursing homes were not treated sufficiently. CONCLUSION: This study indicates that treatment effects should be better monitored.

Cross-sectional study of prevalence of dementia, behavioural symptoms, mobility, pain and other health parameters in nursing homes in Austria and the Czech Republic: results from the DEMDATA project.

BACKGROUND: This paper provides a first comparative exploratory analysis of our findings from DEMDATA, a collaborative project between Austria and the Czech Republic. Analysed here are data from the residents and the environment assessment protocol. METHODS: In a cross sectional study design, residents from randomly drawn and stratified nursing homes were investigated using a common study protocol. RESULTS: From a total resident pool of 1666 persons, 1085 (571 in Austria, 514 in the Czech Republic) persons signed a consent form and participated in the data collection. More than 70% of residents assessed were female and the population was on average 85 years old. A discrepancy between the presence of a medical diagnosis in the charts of the residents and the results of cognitive testing was found. In Austria, 85.2%, in the Czech Republic 53.0% of residents had cognitive impairment. In Austria 80.0%, and in the Czech Republic 56.7% had behavioural problems. With respect to pain, 44.8% in Austria, and 51.5% in the Czech Republic had mild to severe pain. 78.4% of Austrian and 74.5% of the residents had problems with mobility and both populations were in danger of malnutrition. CONCLUSIONS: Most of the prevalence rates are comparable with previous studies also using direct resident assessment. Variations in prevalence rates seem to result mainly from the assessment technique (direct cognitive testing vs. medical chart review). The high prevalence rates for dementia, behavioural symptoms, pain and malnutrition indicate an immediate call for attention to further research and practice development.

Perspectives on family caregiving of people aging with intellectual disability affected by dementia: Commentary from the International Summit on Intellectual Disability and Dementia.

This article, an output of the 2016 International Summit on Intellectual Disability and Dementia, examines familial caregiving situations within the context of a support-staging model for adults with intellectual disability (ID) affected by dementia. Seven narratives offer context to this support-staging model to interpret situations experienced by caregivers. The multidimensional model has two fundamental aspects: identifying the role and nature of caregiving as either primary (direct) or secondary (supportive); and defining how caregiving is influenced by stage of dementia. We propose staging can affect caregiving via different expressions: (1) the "diagnostic phase," (2) the "explorative phase," (3) the "adaptive phase," and (4) the "closure phase." The international narratives illustrate direct and indirect caregiving with commonality being extent of caregiver involvement and attention to the needs of an adult with ID. We conclude that the model is the first to empirically formalize the variability of caregiving within families of people with ID that is distinct from other caregiving groups, and that many of these caregivers have idiosyncratic needs. A support-staging model that recognizes the changing roles and demands of carers of people with ID and dementia can be useful in constructing research, defining family-based support services, and setting public policy.

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.