OBJECTIVES: Timely diagnosis of dementia is recommended in national strategies. To what extent is it occurring across Europe, what factors are associated with it, and what is the impact on carers emotions of quality of diagnostic disclosure? METHODS/DESIGN: Survey of family carers recruited through 5 Alzheimer's associations (Czech Republic, Finland, Italy, the Netherlands, and Scotland). One thousand four hundred and nine carers participated, 84% completing online. Fifty-two percent were adult children, and 37% were spouses, with median age 57. Most (83%) were female. RESULTS: Nearly half (47%) of carers reported that an earlier diagnosis would have been preferable. Delaying factors included reluctance of the person with dementia, lack of awareness of dementia, the response of professionals, and delays within health systems. Recent diagnoses were no more likely to be considered timely, although professional responses appeared to be improving. Delayed diagnoses were more often reported by adult child carers and where the diagnosis was made in the later stages of dementia, or another condition had been previously diagnosed. In all countries except Italy, the diagnosis was shared with the person with dementia in the majority of cases. Timely diagnoses and higher quality diagnostic disclosure are associated with better adjustment and less negative emotional impact on carers in the short and medium term. CONCLUSIONS: Although the study sample were well educated and likely to be in touch with an Alzheimer organisation, many continued to experience the diagnosis of dementia as coming too late, and further work on public awareness, as well as on professional responses, is needed.

• Klíčová slova
• Alzheimer's, adjustment, dementia, diagnostic disclosure, family carers, timely diagnosis,
• MeSH
• časná diagnóza MeSH
• demence diagnóza   MeSH
• dospělí MeSH
• lidé středního věku MeSH
• lidé MeSH
• manželé psychologie   MeSH
• odborná způsobilost normy   MeSH
• osoby pečující o pacienty psychologie   MeSH
• poskytování zdravotní péče normy   MeSH
• senioři MeSH
• uvědomování si MeSH
• výzkum zdravotnických služeb MeSH
• Check Tag
• dospělí MeSH
• lidé středního věku MeSH
• lidé MeSH
• mužské pohlaví MeSH
• senioři MeSH
• ženské pohlaví MeSH
• Publikační typ
• časopisecké články MeSH
• práce podpořená grantem MeSH
• Geografické názvy
• Evropa MeSH

AIM: The problem of family care for people dependent on another person has only recently become a focus of research. As demand for health and social services has not been adequately met by public service providers, growing attention has been given to informal care and the integration of families within systems of health and social care at the community level. This paper presents the results of a survey on informal carers' views and opinions under the current conditions of social support in the Czech Republic. The survey was based on theoretical concepts of caring societies, deinstitutionalization, refamilization, and integrated community care, and aimed to shed light on caring families' experiences and needs in the Czech Republic. METHODS: Family lay carers completed an original self-administered questionnaire. A convenient sample of 200 family carers was selected. RESULTS: The survey collected information about the most influential factors in determining whether the families continue to provide care for their relatives in the household. More than 50% of the caregivers provide care from moral and emotional reasons. Financial problems, risk of losing their jobs, and further deterioration of health of the person they care for emerged as key risk factors, but overall, determination among carers to continue providing care "at any cost" was high (53%). CONCLUSIONS: Involving local communities and services, e.g. general practitioners (GPs) to a greater extent in the coordination of various social and health services, and in support mechanisms at the juncture between informal and formal care would make it easier for family carers to continue providing long-term care.

• Klíčová slova
• care allowance, community based integrated health and social care, dependent people, disability, elderly, informal caregiving,
• MeSH
• dítě MeSH
• domácí ošetřování * MeSH
• dospělí MeSH
• integrované poskytování zdravotní péče * MeSH
• lidé středního věku MeSH
• lidé MeSH
• mladiství MeSH
• osoby pečující o pacienty psychologie   MeSH
• průzkumy a dotazníky MeSH
• rodina MeSH
• senioři nad 80 let MeSH
• senioři MeSH
• sociální opora MeSH
• Check Tag
• dítě MeSH
• dospělí MeSH
• lidé středního věku MeSH
• lidé MeSH
• mladiství MeSH
• mužské pohlaví MeSH
• senioři nad 80 let MeSH
• senioři MeSH
• ženské pohlaví MeSH
• Publikační typ
• časopisecké články MeSH
• Geografické názvy
• Česká republika MeSH

BACKGROUND: Where it has been determined that a resident in a nursing home living with dementia loses decisional capacity, nursing home staff must deliver care that is in the person's best interests. Ideally, decisions should be made involving those close to the person, typically a family carer and health and social care providers. The aim of the Family Carer Decisional Support intervention is to inform family carers on end-of-life care options for a person living with advanced dementia and enable them to contribute to advance care planning. This implementation study proposes to; 1) adopt and apply the intervention internationally; and, 2) train nursing home staff to deliver the family carer decision support intervention. METHODS: This study will employ a multiple case study design to allow an understanding of the implementation process and to identify the factors which determine how well the intervention will work as intended. We will enrol nursing homes from each country (Canada n = 2 Republic of Ireland = 2, three regions in the UK n = 2 each, The Netherlands n = 2, Italy n = 2 and the Czech Republic n = 2) to reflect the range of characteristics in each national and local context. The RE-AIM (reach, effectiveness, adoption, implementation, maintenance) framework will guide the evaluation of implementation of the training and information resources. Our mixed methods study design has three phases to (1) establish knowledge about the context of implementation, (2) participant baseline information and measures and (3) follow up evaluation. DISCUSSION: The use of a multiple case study design will enable evaluation of the intervention in different national, regional, cultural, clinical, social and organisational contexts, and we anticipate collecting rich and in-depth data. While it is hoped that the intervention resources will impact on policy and practice in the nursing homes that are recruited to the study, the development of implementation guidelines will ensure impact on wider national policy and practice. It is our aim that the resources will be sustainable beyond the duration of the study and this will enable the resources to have a longstanding relevance for future advance care planning practice for staff, family carers and residents with advanced dementia.

• Klíčová slova
• Advance care planning, Dementia, Implementation, Nursing homes, Palliative care, Training,
• MeSH
• demence * terapie   MeSH
• lidé MeSH
• osoby pečující o pacienty MeSH
• péče o umírající * metody   MeSH
• pečovatelské domovy MeSH
• předběžné plánování péče * MeSH
• Check Tag
• lidé MeSH
• Publikační typ
• časopisecké články MeSH
• práce podpořená grantem MeSH

BACKGROUND AND OBJECTIVES: The inability of individuals in the advanced stage of dementia to communicate about preferences in care at the end-of-life poses a challenge for healthcare professionals and family carers. The proven effective Family Carer Decision Support intervention has been designed to inform family carers about end-of-life care options available to a person living with advanced dementia. The objectives of the mySupport study were to adapt the application of the intervention for use in different countries, assess impact on family satisfaction and decision-making, and identify costs and supportive conditions for the implementation of the intervention. RESEARCH DESIGN AND METHODS: A multiple-case study design was chosen where the nursing home was the case. Nursing homes were enrolled from six countries: Canada, Czech Republic, Italy, Netherlands, Republic of Ireland, and United Kingdom. RESULTS: Seventeen cases (nursing homes) participated, with a total of 296 interviews completed including family carers, nursing home staff, and health providers. Five themes relevant to the implementation of the intervention were identified: supportive relationships; committed staff; perceived value of the intervention; the influence of external factors on the nursing home; and resource impact of delivery. DISCUSSION AND IMPLICATIONS: There is a commonality of facilitators and barriers across countries when introducing practice innovation. A key learning point was the importance of implementation being accompanied by committed and supported nursing home leadership. The nursing home context is dynamic and multiple factors influence implementation at different points of time.

• Klíčová slova
• Comfort care, Decision-making, Dementia, Family caregiver,
• MeSH
• demence * MeSH
• lidé MeSH
• osoby pečující o pacienty * psychologie   MeSH
• péče o umírající MeSH
• pečovatelské domovy * organizace a řízení   MeSH
• předběžné plánování péče * MeSH
• rozhodování MeSH
• senioři MeSH
• Check Tag
• lidé MeSH
• mužské pohlaví MeSH
• senioři MeSH
• ženské pohlaví MeSH
• Publikační typ
• časopisecké články MeSH
• práce podpořená grantem MeSH
• Geografické názvy
• Česká republika MeSH
• Irsko MeSH
• Itálie MeSH
• Kanada MeSH
• Nizozemsko MeSH
• Spojené království MeSH

BACKGROUND: Research into care for older patients in the hospital environment has become an increasingly valuable source of information, as it gives feedback on the quality of hospital care provided. The aim of this study is to provide a comprehensive overview of the self-reported needs of older people in hospital care. METHODS: The scoping review was conducted by searching the following databases: Medline, Web of Science, ProQuest Central, Scopus, Cinahl, PsycINFO and Summon. RESULTS: The search identified articles focusing on older people in hospital care. The majority of these articles address the system and quality of care for seniors at a somewhat general and theoretical level. Met and unmet needs were assessed by a variety of test methods focusing mainly on medical issues (e.g., Mini-Nutritional Assessment, ADLs-activities of daily living, Abbey Pain Scale) and mostly from the perspective of hospital staff, carers and relatives. Only 15 articles used assessments based on information and opinions obtained from the seniors themseAbstract_Paralves (self-reported needs). A thematic analysis revealed seven main themes: conduct and care in emergency departments, dignity, nutritional care, satisfaction of patients' needs, pain, caring with respect, decision-making and spiritual needs. CONCLUSION/DISCUSSION: The results of this scoping review suggest that more attention should be focused on information acquired from the patients themselves, as it is only the patient, however, old or frail, who can offer an accurate perspective on met or unmet needs and the quality of care provided.

• Klíčová slova
• Acute care, Hospital, Needs, Senior,
• MeSH
• činnosti denního života * MeSH
• lidé MeSH
• nemocnice MeSH
• osoby pečující o pacienty * MeSH
• senioři MeSH
• Check Tag
• lidé MeSH
• senioři MeSH
• Publikační typ
• časopisecké články MeSH
• scoping review 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.

• Klíčová slova
• Dementia, Down syndrome, caregivers, caregiving, intellectual disability, narratives,
• 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: This protocol outlines research to explore family members' and paid staff's perceptions of the impact of COVID-19 on individuals with intellectual and developmental disabilities and their caregivers. Evidence suggests that people with intellectual and developmental disabilities experience disparities in healthcare access and utilisation. This disparity was evident early in the pandemic when discussions arose regarding the potential exclusion of this population to critical care. Methods: An anonymous online survey will be conducted with caregivers, both family members and paid staff, to explore their perceptions of the impact of COVID-19 in terms of demographics, living arrangements, access to services, social distancing, and carer wellbeing. The survey will be developed by the research team, many of whom are experts in intellectual disability within their own jurisdictions. Using back-translation our team will translate the survey for distribution in 18 countries worldwide for international comparison. The survey team have extensive personal and professional networks and will promote the survey widely on social media with the support of local disability and advocacy agencies. Statistical descriptive and comparative analyses will be conducted. Ethical approval has been obtained for this study from University College Dublin's Human Research Ethics Committee (HS-20-28-Linehan). Dissemination: Study findings will be prepared in a number of formats in order to meet the needs of different audiences. Outputs will include academic papers, lessons learned paper, practice guidelines, reports, infographics and video content. These outputs will be directed to families, frontline and management delivering disability services, national-level policy makers, healthcare quality and delivery authorities, national pandemic organisations and international bodies.

• Klíčová slova
• COVID-19, Caregivers Carers, Coronavirus, Health Disparity, Intellectual Disability, Intellectual and Developmental Disability, Pandemic,
• Publikační typ
• časopisecké články MeSH

INTRODUCTION: This article describes the views of European rural general practitioners regarding the strengths, weaknesses, opportunities and threats (SWOT) of the implementation of a chronic care model (CCM) in European rural primary care. METHODS: This was a mixed-methods online survey. Data were collected from 227 general practitioners between May and December 2017. Categorical data were analysed using descriptive methods while free-text responses were analysed using qualitative methods. The setting was rural primary care in nine European countries (including Central and Eastern Europe). Main outcomes measures were respondents' evaluations of a chronic care model in their rural healthcare settings in terms of SWOT. RESULTS: The SWOT analysis showed that the expertise of healthcare professionals and the strength of relationships and communications between professionals, caregivers and patients are positive components of the CCM system. However, ensuring adequate staffing levels and staff competency are issues that would need to be addressed. Opportunities included the need to enable patients to participate in decision making by ensuring adequate health literacy. CONCLUSION: The CCM could certainly have benefits for health care in rural settings but staffing levels and staff competency would need to be addressed before implementation of CCM in such settings. Improving health literacy among patients and their carers will be essential to ensure their full participation in the implementation of a successful CCM.

• Klíčová slova
• Europe, disease management, health and wellbeing, health services research, primary health care survey research, public policy issues, rural health services, chronic disease,
• MeSH
• lidé MeSH
• osoby pečující o pacienty MeSH
• poskytování zdravotní péče MeSH
• praktičtí lékaři * MeSH
• primární zdravotní péče MeSH
• venkovské obyvatelstvo MeSH
• Check Tag
• lidé MeSH
• Publikační typ
• časopisecké články MeSH

INTRODUCTION: People with schizophrenia often need long-term support in their everyday life. Thus, caregivers are vital factors to support their recovery and long-term functioning. In turn, however, the caregiver role is highly burdensome and may lead to severe distress and burnout, imposing further hardness on patients and their family. The aim of this paper was to map the caregivers' situation and their possible needs in Bulgaria, the Czech Republic, Hungary, and Russia. METHODS: 225 caregivers of schizophrenic patients completed a questionnaire in Bulgaria (n=50), the Czech Republic (n=50), Hungary (n=50) and Russia (n=75) about their sociodemographic status, financial, emotional and subjective challenges that arise from the caregiver duty. RESULTS: Caregivers are mainly married (56%), women (72%) entering their 50's, working full time (48%). The average time they spend taking care of someone with schizophrenia is 26 hours weekly. This duty often limits their indepen - dence (59%), recreational activities (56%), financial security (47%) and social life (47%). Thirty-nine percentage reported health-related issues, while sadness and anxiety were also commonly experienced. Caregivers felt left alone with their struggles (56%), longing for both disease-related information and self-help support. As a result, 21% felt fully or mostly dissatisfied with their life. CONCLUSION: Taking care of someone with schizophrenia represents a high burden, affecting one's social and economic status, as well as mental and physical health. Caregivers often feel alone with their struggles and would welcome tailored support to help them cope with the multidimensional burden they carry.

• MeSH
• lidé MeSH
• osoby pečující o pacienty MeSH
• schizofrenie * terapie   MeSH
• Check Tag
• lidé MeSH
• ženské pohlaví MeSH
• Publikační typ
• časopisecké články MeSH
• Geografické názvy
• Bulharsko MeSH
• Česká republika MeSH
• Maďarsko MeSH

Background: A growing body of evidence attests to the disproportionate impact of COVID-19 on persons with intellectual and developmental disabilities (IDD) during the pandemic. This study asked caregivers about their perceptions of how COVID-19 impacted them and the people they support. Method: An online survey was conducted in 12 countries during August-September 2020 and sought information on demographics, support practices, information and training, experiences of COVID-19, social distancing, and wellbeing, as measured by the DASS12. This study reports on 3,754 family members, direct support professionals, and managers who participated in the survey. Results: Caregivers observed increases in depression/anxiety, stereotyped behaviours, aggression towards others and weight gain in the person(s) they supported. They also reported difficulties supporting the person(s) to access healthcare. Families reported reducing or ceasing employment and absorbed additional costs when supporting their family member. Direct support professionals experienced changes in staff shifts, staff absences, increased workload and hiring of casual staff. Caregivers' wellbeing revealed high levels of stress, depression, and less so anxiety. The strongest predictor of wellbeing among families was observation of changes in mood in the person(s) they supported, while for direct support professionals, the strongest predictors of wellbeing were reorganisation of staff shifts and increases in new direct support staff. Discussion: Findings support the contention of this population experiencing a disproportionate burden during the COVID-19 pandemic, reflecting historical inequities in access to healthcare and other human rights violations which are now protected under the United Nations Convention on the Rights of Persons with Disabilities.

• Klíčová slova
• COVID-19, Caregivers, Carers, Coronavirus, Health Disparity, Intellectual Disability, Intellectual and Developmental Disability, Pandemic,
• Publikační typ
• časopisecké články MeSH