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.
- MeSH
- demence epidemiologie psychologie MeSH
- domovy pro seniory * MeSH
- kvalita života psychologie MeSH
- lidé MeSH
- pečovatelské domovy * MeSH
- prevalence MeSH
- průřezové studie MeSH
- senioři nad 80 let MeSH
- senioři MeSH
- testy pro posouzení mentálních funkcí a demence statistika a číselné údaje MeSH
- Check Tag
- lidé MeSH
- mužské pohlaví MeSH
- senioři nad 80 let MeSH
- senioři MeSH
- ženské pohlaví MeSH
- Publikační typ
- časopisecké články MeSH
- Geografické názvy
- Česká republika MeSH
- Rakousko MeSH
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.
- MeSH
- demence * MeSH
- konsensuální konference jako téma * MeSH
- lidé MeSH
- mentální retardace * MeSH
- ochrana zájmů pacientů * MeSH
- osoby s mentálním postižením * MeSH
- sociální opora * MeSH
- výběr pacientů * MeSH
- vzdělávání pacientů jako téma * MeSH
- Check Tag
- lidé MeSH
- Publikační typ
- časopisecké články MeSH
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.
- MeSH
- analgetika terapeutické užití MeSH
- anxiolytika terapeutické užití MeSH
- bolest komplikace farmakoterapie MeSH
- demence komplikace MeSH
- domovy pro seniory normy MeSH
- kognitivní dysfunkce komplikace MeSH
- kvalita zdravotní péče * MeSH
- lidé MeSH
- měření bolesti MeSH
- pečovatelské domovy normy MeSH
- průřezové studie MeSH
- průzkumy a dotazníky MeSH
- senioři nad 80 let MeSH
- senioři MeSH
- úzkost komplikace farmakoterapie MeSH
- Check Tag
- lidé MeSH
- mužské pohlaví MeSH
- senioři nad 80 let MeSH
- senioři MeSH
- ženské pohlaví MeSH
- Publikační typ
- časopisecké články MeSH
- Geografické názvy
- Česká republika MeSH
Počet lidí žijících s demencí se v důsledku stárnutí populace velmi rychle zvyšuje. V České republice žije v současné době cca 160 tisíc lidí s demencí, zhruba tři čtvrtiny z tohoto počtu v domácím prostředí. Počet pacientů s demencí, kteří žijí v ústavních zařízeních sociálních služeb, se také významně zvyšuje. Přes tuto skutečnost a navzdory rostoucímu množství literatury o demenci publikované v posledních několika letech je dosud relativně málo známo o zdravotním stavu a stavu poskytování péče lidem s demencí v těchto zařízeních. V Evropě existuje málo studií, které poskytují kvalitní data pro plánování péče v institucionální dlouhodobé péči. Informace o prevalenci demence v rakouských i českých sociálních zařízeních jsou sporadické. Ve studii DEMDATA byly shromážděny údaje o zdravotním stavu a péči o lidi žijící s demencí v institucích typu domov důchodců a domov pro seniory v České republice (a obdobné šetření probíhalo v Rakousku). Jedním ze zkoumaných aspektů byla také farmakoterapie, V současné době analyzujeme a zpracováváme informace ze studie DEMDATA. V tomto článku se zaměřujeme na antipsychotika.
The number of patients with dementia is rising quickly, due to the ageing population. There is currently cca 160 thousand people with dementia, three quarters of them living at their homes. The numbers of patients living in residential care social services facilities is also rising significantly. In spite of this and even though the volume of literature about dementia published in the recent years is increasing, there is still relatively little awareness of the health conditions and care conditions in patients at such facilities. There are few studies in Europe which provide quality data for planning care at long-term care facilities. Information about prevalence of dementia in Austrian and Czech is sporadic. The DEMDATA study gathers data on the health conditions and healthcare conditions in dementia patients living in retirement homes and nursing homes in the Czech Republic (and analogous studies were done in Austria). One of the aspects studied was pharmacotherapy. We are currently analysing and processing information from the DEMDATA study. In this article we focus on antipsychotics.
- Klíčová slova
- domov se zvláštním režimem, studie DEMDATA,
- MeSH
- antipsychotika škodlivé účinky MeSH
- behaviorální symptomy farmakoterapie MeSH
- demence farmakoterapie MeSH
- dlouhodobá péče MeSH
- domovy pro seniory MeSH
- kognitivní poruchy farmakoterapie MeSH
- lékařské předpisy statistika a číselné údaje MeSH
- lidé MeSH
- multicentrické studie jako téma MeSH
- průřezové studie MeSH
- průzkumy a dotazníky MeSH
- senioři nad 80 let MeSH
- senioři MeSH
- Check Tag
- lidé MeSH
- mužské pohlaví MeSH
- senioři nad 80 let MeSH
- senioři MeSH
- ženské pohlaví MeSH
- Publikační typ
- práce podpořená grantem MeSH
- Geografické názvy
- Česká republika MeSH
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.
- MeSH
- behaviorální symptomy diagnóza epidemiologie MeSH
- bolest diagnóza epidemiologie MeSH
- demence diagnóza epidemiologie MeSH
- domovy pro seniory trendy MeSH
- kognitivní dysfunkce diagnóza epidemiologie MeSH
- lidé MeSH
- náhodné rozdělení MeSH
- omezení pohyblivosti * MeSH
- pečovatelské domovy trendy MeSH
- prevalence MeSH
- průřezové studie MeSH
- senioři nad 80 let MeSH
- senioři MeSH
- Check Tag
- lidé MeSH
- mužské pohlaví MeSH
- senioři nad 80 let MeSH
- senioři MeSH
- ženské pohlaví MeSH
- Publikační typ
- časopisecké články MeSH
- práce podpořená grantem MeSH
- Geografické názvy
- Česká republika MeSH
- Rakousko MeSH
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.
- MeSH
- demence komplikace psychologie MeSH
- lidé středního věku MeSH
- lidé MeSH
- mentální retardace komplikace psychologie MeSH
- osoby pečující o pacienty psychologie MeSH
- senioři MeSH
- zdravotní politika MeSH
- Check Tag
- lidé středního věku MeSH
- lidé MeSH
- mužské pohlaví MeSH
- senioři MeSH
- ženské pohlaví MeSH
- Publikační typ
- časopisecké články MeSH
- Research Support, U.S. Gov't, P.H.S. MeSH
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.
- MeSH
- behaviorální symptomy psychologie terapie MeSH
- demence epidemiologie psychologie terapie MeSH
- dlouhodobá péče organizace a řízení MeSH
- domovy pro seniory statistika a číselné údaje MeSH
- institucionalizace MeSH
- kognitivní poruchy psychologie terapie MeSH
- kvalita života MeSH
- lékaři statistika a číselné údaje MeSH
- lidé MeSH
- péče orientovaná na pacienta MeSH
- pečovatelské domovy statistika a číselné údaje MeSH
- průřezové studie MeSH
- průzkumy a dotazníky MeSH
- rodina psychologie MeSH
- senioři MeSH
- Check Tag
- lidé MeSH
- mužské pohlaví MeSH
- senioři MeSH
- ženské pohlaví MeSH
- Publikační typ
- časopisecké články MeSH
- multicentrická studie MeSH
- práce podpořená grantem MeSH
- Geografické názvy
- Česká republika epidemiologie MeSH
- Rakousko epidemiologie MeSH
