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1.
Aging Ment Health ; 25(9): 1730-1739, 2021 09.
Artigo em Inglês | MEDLINE | ID: mdl-32223443

RESUMO

OBJECTIVES: This study aimed to investigate the occurrence of suicidal ideation and associated factors in older persons with dementia living at home in eight European countries, and its association with quality of life. Furthermore, changes in suicidal ideation over time were investigated. METHODS: This cohort study (n = 1,223) was part of the European "RightTimePlaceCare" project conducted in 2010-2013. Participating countries were Estonia, Finland, France, Germany, the Netherlands, Spain, Sweden and the United Kingdom. Baseline and follow-up data were analysed using bivariate and multivariate logistic regression. RESULTS: The occurrence of suicidal ideation in the participating countries varied between 6% and 24%. Factors significantly (p < 0.0018) associated with suicidal ideation using bivariate analysis were: nationality, depressive symptoms, delusions, hallucinations, agitation, anxiety, apathy, disinhibition, irritability, night-time behaviour disturbances, anxiolytics and anti-dementia medication. In the multivariate regression analysis, country of origin, moderate stage of the dementia, depressive and delusional symptoms, and anti-dementia medication were significantly associated with suicidal ideation (p < 0.05). Over time, suicidal ideation decreased from severe to mild or became absent in 54% of the persons with dementia. CONCLUSION: It is essential that professionals identify older persons with dementia and suicidal ideation and depressive and other psychological symptoms in order to give them appropriate treatment and provide relief for their informal caregivers. We emphasize the importance of identifying suicidal ideation, irrespective of depressive symptoms, and specifically of paying attention to persons with moderate dementia. Living with the informal caregiver seems to be associated with staying stable without suicidal ideation.


Assuntos
Demência , Ideação Suicida , Idoso , Idoso de 80 Anos ou mais , Cuidadores , Estudos de Coortes , Demência/epidemiologia , Depressão/epidemiologia , Humanos , Qualidade de Vida
2.
BMC Geriatr ; 20(1): 453, 2020 11 05.
Artigo em Inglês | MEDLINE | ID: mdl-33153444

RESUMO

BACKGROUND: Evidence is lacking on the differences between hospitalisation of people with dementia living in nursing homes and those living in the community. The objectives of this study were: 1) to describe the frequency of hospital admission among people with dementia in eight European countries living in nursing homes or in the community, 2) to examine the factors associated with hospitalisation in each setting, and 3) to evaluate the costs associated with it. METHODS: The present study is a secondary data analysis of the RightTimePlaceCare European project. A cross-sectional survey was conducted with data collected from people with dementia living at home or who had been admitted to a nursing home in the last 3 months, as well as from their caregivers. Data on hospital admissions at 3 months, cognitive and functional status, neuropsychiatric symptoms, comorbidity, polypharmacy, caregiver burden, nutritional status, and falls were assessed using validated instruments. Multivariate regression models were used to investigate the factors associated with hospital admission for each setting. Costs were estimated by multiplying quantities of resources used with the unit cost of each resource and inflated to the year 2019. RESULTS: The study sample comprised 1700 people with dementia living in the community and nursing homes. Within 3 months, 13.8 and 18.5% of people living in nursing homes and home care, respectively, experienced ≥1 hospital admission. In the nursing home setting, only polypharmacy was associated with a higher chance of hospital admission, while in the home care setting, unintentional weight loss, polypharmacy, falls, and more severe caregiver burden were associated with hospital admission. Overall, the estimated average costs per person with dementia/year among participants living in a nursing home were lower than those receiving home care. CONCLUSION: Admission to hospital is frequent among people with dementia, especially among those living in the community, and seems to impose a remarkable economic burden. The identification and establishment of an individualised care plan for those people with dementia with polypharmacy in nursing homes, and those with involuntary weight loss, accidental falls, polypharmacy and higher caregiver burden in the home care setting, might help preventing unnecessary hospital admissions.


Assuntos
Demência , Estudos Transversais , Demência/diagnóstico , Demência/epidemiologia , Demência/terapia , Serviço Hospitalar de Emergência , Europa (Continente)/epidemiologia , Hospitalização , Hospitais , Humanos , Casas de Saúde
3.
Age Ageing ; 48(2): 291-299, 2019 03 01.
Artigo em Inglês | MEDLINE | ID: mdl-30423032

RESUMO

BACKGROUND: the European Union of Medical Specialists (UEMS-GMS) recommendations for training in Geriatric Medicine were published in 1993. The practice of Geriatric Medicine has developed considerably since then and it has therefore become necessary to update these recommendations. METHODS: under the auspices of the UEMS-GMS, the European Geriatric Medicine Society (EuGMS) and the European Academy of Medicine of Ageing (EAMA), a group of experts, representing all member states of the respective bodies developed a new framework for education and training of specialists in Geriatric Medicine using a modified Delphi technique. Thirty-two expert panel members from 30 different countries participated in the process comprising three Delphi rounds for consensus. The process was led by five facilitators. RESULTS: the final recommendations include four different domains: 'General Considerations' on the structure and aim of the syllabus as well as quality indicators for training (6 sub-items), 'Knowledge in patient care' (36 sub-items), 'Additional Skills and Attitude required for a Geriatrician' (9 sub-items) and a domain on 'Assessment of postgraduate education: which items are important for the transnational comparison process' (1 item). CONCLUSION: the current publication describes the development of the new recommendations endorsed by UEMS-GMS, EuGMS and EAMA as minimum training requirements to become a geriatrician at specialist level in EU member states.


Assuntos
Geriatria/educação , Idoso , Currículo , Técnica Delphi , Educação de Pós-Graduação em Medicina/métodos , Educação de Pós-Graduação em Medicina/normas , Europa (Continente) , Geriatria/normas , Humanos
4.
BMC Geriatr ; 19(1): 172, 2019 06 24.
Artigo em Inglês | MEDLINE | ID: mdl-31234781

RESUMO

BACKGROUND: Dementia is a syndrome, with a wide range of symptoms. It is important to have a timely diagnosis during the disease course to reduce the risk of medication errors, enable future care planning for the patient and their relatives thereby optimizing quality of life (QoL). For this reason, it is important to avoid a diagnosis of dementia not otherwise specified (DNOS) and instead obtain a diagnosis that reflects the underlying pathology. The aim of this study was to investigate the prevalence and associated factors of DNOS in persons with dementia living at home or in a nursing home. METHODS: This is a cross-sectional cohort study performed in eight European countries. Persons with dementia aged ≥65 years living at home (n = 1223) or in a nursing home (n = 790) were included. Data were collected through personal interviews with questionnaires based on standardised instruments. Specific factors investigated were sociodemographic factors, cognitive function, and mental health, physical health, QoL, resource utilization and medication. Bivariate and backward stepwise multivariate regression analyses were performed. RESULTS: The prevalence of DNOS in the eight participating European countries was 16% (range 1-30%) in persons living at home and 21% (range 1-43%) in persons living in a nursing home. These people are more often older compared to those with a specific dementia diagnosis. In both persons living at home and persons living in a nursing home, DNOS was associated with more severe neuropsychiatric symptoms and less use of anti-dementia medication. In addition, persons with DNOS living at home had more symptoms of depression and less use of antidepressant medication. CONCLUSIONS: The prevalence of DNOS diagnosis is common and seems to vary between European countries. People with DNOS are more often older with more severe neuropsychiatric symptoms and receive fewer anti-dementia medication, anxiolytics and antidepressants. This would support the suggestion that a proper and specific diagnosis of dementia could help the management of their disease.


Assuntos
Demência/diagnóstico , Demência/epidemiologia , Inquéritos e Questionários , Idoso , Idoso de 80 Anos ou mais , Cognição/fisiologia , Estudos de Coortes , Estudos Transversais , Demência/psicologia , Europa (Continente)/epidemiologia , Feminino , Humanos , Vida Independente/psicologia , Vida Independente/tendências , Masculino , Casas de Saúde/tendências , Prevalência , Qualidade de Vida/psicologia
5.
Health Qual Life Outcomes ; 16(1): 131, 2018 Jun 28.
Artigo em Inglês | MEDLINE | ID: mdl-29954384

RESUMO

BACKGROUND: To assess the quality of life of people with dementia, measures are required for self-rating by the person with dementia, and for proxy rating by others. The Quality of Life in Alzheimer's Disease scale (QoL-AD) is available in two versions, QoL-AD-SR (self-rating) and QoL-AD-PR (proxy rating). The aim of our study was to analyse the inter-rater agreement between self- and proxy ratings, in terms of both the total score and the items, including an analysis specific to care setting, and to identify factors associated with this agreement. METHODS: Cross-sectional QoL-AD data from the 7th Framework European RightTimePlaceCare study were analysed. A total of 1330 cases were included: n = 854 receiving home care and n = 476 receiving institutional long-term nursing care. The proxy raters were informal carers (home care) and best-informed professional carers (institutional long-term nursing care). Inter-rater agreement was investigated using Bland-Altman plots for the QoL-AD total score and by weighted kappa statistics for single items. Associations were investigated by regression analysis. RESULTS: The overall QoL-AD assessment of those with dementia revealed a mean value of 33.2 points, and the proxy ratings revealed a mean value of 29.8 points. The Bland-Altman plots revealed a poor agreement between self- and proxy ratings for the overall sample and for both care settings. With one exception (item 'Marriage' weighted kappa 0.26), the weighted kappa values for the single QoL-AD items were below 0.20, indicating poor agreement. Home care setting, dementia-related behavioural and psychological symptoms, and the functional status of the person with dementia, along with the caregiver burden, were associated with the level of agreement. Only the home care setting was associated with an increase larger than the predefined acceptable difference between self- and proxy ratings. CONCLUSIONS: Proxy quality of life ratings from professional and informal carers appear to be lower than the self-ratings of those with dementia. QoL-AD-SR and QoL-AD-PR are therefore not interchangeable, as the inter-rater agreement differs distinctly. Thus, a proxy rating should be judged as a complementary perspective for a self-assessment of quality of life by those with dementia, rather than as a valid substitute.


Assuntos
Doença de Alzheimer/psicologia , Procurador/psicologia , Qualidade de Vida/psicologia , Inquéritos e Questionários/normas , Idoso , Idoso de 80 Anos ou mais , Cuidadores/psicologia , Estudos Transversais , Feminino , Serviços de Assistência Domiciliar , Humanos , Masculino , Autorrelato
6.
Age Ageing ; 47(1): 68-74, 2018 01 01.
Artigo em Inglês | MEDLINE | ID: mdl-28985257

RESUMO

Objectives: to evaluate the frequency of potentially inappropriate medication (PIM) prescription among older people with dementia (PwD) from eight countries participating in the European study 'RightTimePlaceCare', and to evaluate factors and adverse outcomes associated with PIM prescription. Methods: survey of 2,004 PwD including a baseline assessment and follow-up after 3 months. Interviewers gathered data on age, sex, prescription of medication, cognitive status, functional status, comorbidity, setting and admission to hospital, fall-related injuries and mortality in the time between baseline and follow-up. The European Union(7)-PIM list was used to evaluate PIM prescription. Multivariate regression analysis was used to investigate factors and adverse outcomes associated with PIM prescription. Results: overall, 60% of the participants had at least one PIM prescription and 26.4% at least two. The PIM therapeutic subgroups most frequently prescribed were psycholeptics (26% of all PIM prescriptions) and 'drugs for acid-related disorders' (21%). PwD who were 80 years and older, lived in institutional long-term care settings, had higher comorbidity and were more functionally impaired were at higher risk of being prescribed two PIM or more. The prescription of two or more PIM was associated with higher chance of suffering from at least one fall-related injury and at least one episode of hospitalisation in the time between baseline and follow-up. Conclusions: PIM use among PwD is frequent and is associated with institutional long-term care, age, advanced morbidity and functional impairment. It also appears to be associated with adverse outcomes. Special attention should be paid to psycholeptics and drugs for acid-related disorders.


Assuntos
Demência/tratamento farmacológico , Prescrição Inadequada , Lista de Medicamentos Potencialmente Inapropriados , Fatores Etários , Idoso , Idoso de 80 Anos ou mais , Antipsicóticos/efeitos adversos , Demência/diagnóstico , Demência/psicologia , Interações Medicamentosas , Prescrições de Medicamentos , Efeitos Colaterais e Reações Adversas Relacionados a Medicamentos/diagnóstico , Efeitos Colaterais e Reações Adversas Relacionados a Medicamentos/epidemiologia , Europa (Continente)/epidemiologia , Feminino , Fármacos Gastrointestinais/efeitos adversos , Avaliação Geriátrica , Pesquisas sobre Atenção à Saúde , Humanos , Masculino , Polimedicação , Padrões de Prática Médica , Estudos Prospectivos , Fatores de Risco
7.
Aging Ment Health ; 21(11): 1138-1146, 2017 11.
Artigo em Inglês | MEDLINE | ID: mdl-27463390

RESUMO

OBJECTIVES: To investigate informal caregivers' psychological well-being and predicted increase in psychological well-being, when caring for persons with dementia (PwDs) living at home, related to caregiver, PwD and formal care (FC) factors. METHOD: A cohort study at baseline and 3 months' follow-up in eight European countries. Caregivers included (n = 1223) were caring for PwDs aged ≥ 65 years at home. Data on caregivers, PwDs and FC were collected using standardized instruments. Regression analysis of factors associated with caregiver psychological well-being at baseline and 3 months later was performed. RESULTS: Factors associated with caregiver psychological well-being at baseline were positive experience of caregiving, low caregiver burden, high quality of life (QoL) for caregivers, male gender of PwD, high QoL of PwD, few neuropsychiatric symptoms and depressive symptoms for the PwD. At follow-up, caregivers with increased psychological well-being experienced of quality of care (QoC) higher and were more often using dementia specific service. Predicting factors for caregivers' increased psychological well-being were less caregiver burden, positive experience of caregiving, less supervision of the PwD and higher caregiver QoL, if PwD were male, had higher QoL and less neuropsychiatric symptoms. Furthermore, higher QoC predicted increased caregivers' psychological well-being. CONCLUSION: Informal caregiving for PwDs living at home is a complex task. Our study shows that caregivers' psychological well-being was associated with, among other things, less caregiver burden and higher QoL. Professionals should be aware of PwD neuropsychiatric symptoms that might affect caregivers' psychological well-being, and provide proper care and treatment for caregivers and PwDs.


Assuntos
Cuidadores/psicologia , Efeitos Psicossociais da Doença , Demência/enfermagem , Satisfação Pessoal , Qualidade de Vida/psicologia , Adulto , Idoso , Idoso de 80 Anos ou mais , Europa (Continente) , Feminino , Seguimentos , Serviços de Assistência Domiciliar , Humanos , Masculino , Pessoa de Meia-Idade
8.
Int Psychogeriatr ; 28(4): 621-30, 2016 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-26652662

RESUMO

BACKGROUND: This study forms part of a larger European programme investigating the transition from home care to long-term care (LTC) facility in people with dementia (PwD) at the margins of LTC. The aim of this study was to explore the factors associated with depressive symptomatology in PwD in different settings. METHODS: A total of 1,538 PwD, of which 957 received home care and 581 lived in a LTC facility, and their carers were interviewed. The Cornell Scale for Depression in Dementia (CSDD) measured depressive symptomatology. PwD completed measures of cognition and quality of life (QoL), and informal or formal carers completed measures on the PwD' QoL, neuropsychiatric behavior, activities of daily living, comorbidities, pain, and falls. Logistic regression was used to assess which factors contributed to depressive symptomatology in the two settings. RESULTS: Those receiving home care, living in Germany, and with severe dementia, showed the highest prevalence of depressive symptomatology. In the home care group, high levels of pain, neuropsychiatric behavior, and comorbidity, as well as low self- and proxy-rated QoL were factors associated with depressive symptomatology. In the LTC group, low proxy-rated QoL, more severe neuropsychiatric behavior, being a male informal carer and living in Germany were associated with depressive symptomatology. CONCLUSIONS: Evidence highlights the need for targeting different aspects in the management of depression in dementia, including offering improved pain management for those living in the community. Further research needs to explore cultural variations and carer gender factors associated with higher levels of depressive symptomatology.


Assuntos
Demência/psicologia , Depressão/epidemiologia , Serviços de Assistência Domiciliar , Assistência de Longa Duração/psicologia , Qualidade de Vida/psicologia , Idoso , Idoso de 80 Anos ou mais , Cuidadores/psicologia , Comorbidade , Demência/epidemiologia , Depressão/psicologia , Europa (Continente)/epidemiologia , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Testes Neuropsicológicos , Prevalência , Índice de Gravidade de Doença
9.
BMC Geriatr ; 16: 32, 2016 Jan 29.
Artigo em Inglês | MEDLINE | ID: mdl-26832354

RESUMO

BACKGROUND: In European countries, knowledge about availability and utilization of support for informal caregivers caring for older persons (≥65 years) with dementia (PwD) is lacking. To be able to evaluate and develop the dementia support system for informal caregivers to PwD, a survey of European support systems and professionals involved is needed. The aim of this study was to explore support for informal caregivers to PwD in European countries. We investigated the availability and utilization of support in each of the participating countries, and the professional care providers involved, through the dementia disease. METHODS: A mapping system was used in 2010-2011 to gather information about estimations of availability, utilization, and professional providers of support to informal caregivers caring for PwD. Data collected was representing each country as a whole. RESULTS: There was high availability of counselling, caregiver support, and education from the diagnosis to the intermediate stage, with a decrease in the late to end of life stage. Utilization was low, although there was a small increase in the intermediate stage. Day care and respite care were highly available in the diagnosis to the intermediate stage, with a decrease in the late to end of life stage, but both types of care were utilized by few or no caregivers through any of the disease stages. Professionals specialized in dementia (Bachelor to Master's degree) provided counselling and education, whereas caregiver support for informal caregivers and day care, respite care, and respite care at home were provided by professionals with education ranging from upper secondary schooling to a Master's degree. CONCLUSIONS: Counselling, caregiver support, and education were highly available in European countries from diagnosis to the intermediate stage of the dementia disease, decreasing in the late/end of life stages but were rarely utilized. Countries with care systems based on national guidelines for dementia care seem to be more aware of the importance of professionals specialized in dementia care when providing support to informal caregivers. Mapping the systems of support for informal caregivers of PwD is a valuable tool for evaluating existing systems, internationally, nationally and locally for policy making.


Assuntos
Cuidadores/psicologia , Cuidadores/tendências , Demência/psicologia , Demência/terapia , Cuidados Intermitentes/psicologia , Cuidados Intermitentes/tendências , Idoso , Idoso de 80 Anos ou mais , Estudos Transversais , Demência/epidemiologia , Progressão da Doença , Europa (Continente)/epidemiologia , Feminino , Humanos , Masculino , Cuidados Intermitentes/métodos , Inquéritos e Questionários
10.
Int Psychogeriatr ; 27(4): 657-67, 2015 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-25497829

RESUMO

BACKGROUND: Depression is a common comorbid disorder of dementia. This study explores the prevalence of and factors associated with depressive symptomatology, and antidepressant prescription rates in severe dementia across eight European countries. METHODS: In total, 414 people with severe dementia completed measures of cognition and quality of life (QoL), whilst carers completed proxy measures of activities of daily living (ADLs), depression, neuropsychiatric symptoms, QoL and comorbidity. RESULTS: Findings indicated that 30% of the sample had depression, whilst the highest and lowest prevalence of depression was reported in Germany and Finland, respectively. Lower QoL, the presence of pain and more frequent neuropsychiatric symptoms were associated with depressive symptomatology, whilst no significant relationship between impairment of ADLs, comorbidity, and depression emerged. Spain and Estonia had the highest and lowest rates of antidepressant prescribing, respectively, whilst Germany had the highest discrepancy between depressive symptomatology and prescription. CONCLUSIONS: The study highlights variations across countries in the prevalence of depressive symptomatology in severe dementia and prescription of antidepressants. Information about factors associated with depressive symptomatology may help to better identify and manage depression.


Assuntos
Antidepressivos/uso terapêutico , Demência/complicações , Depressão/etiologia , Padrões de Prática Médica/estatística & dados numéricos , Atividades Cotidianas/psicologia , Doença Aguda , Idoso de 80 Anos ou mais , Demência/psicologia , Depressão/tratamento farmacológico , Depressão/epidemiologia , Europa (Continente)/epidemiologia , Feminino , Humanos , Masculino , Testes Neuropsicológicos , Prevalência , Qualidade de Vida/psicologia , Fatores de Risco
11.
J Nurs Scholarsh ; 47(5): 407-16, 2015 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-26255994

RESUMO

PURPOSE: To describe available and utilized formal care and service at home for persons with dementia, from diagnosis to end-of-life stage, in eight European countries. DESIGN: A descriptive cross-country design concerning eight European countries as a part of the European research project RightTimePlaceCare. METHODS: The research team in each country used a mapping system to collect country-specific information concerning dementia care and service system. The mapping system consists of 50 types of care and service activities. Sixteen of the 50 predefined activities concerning care and service at home were selected for this study and subdivided into three categories, following the stages of dementia. FINDINGS: Availability was reported to be higher than utilization, and the findings indicated more similarities than differences among the eight countries involved. Even though there were several available activities of "basic care and services" and "healthcare interventions," they were utilized by few in most countries. Furthermore, "specialized dementia care and services" were sparsely available and even more sparsely utilized in the participating countries. CONCLUSIONS: The findings indicated that persons with dementia in Europe received formal care and service on a general, basic level but seldom adjusted to their specific needs. CLINICAL RELEVANCE: This study describes the gap between service provision and utilization enabling nurses to develop individually adjusted care plans for persons with dementia during the progress of the disease. The findings do not include matters of quality of care or how to best organize effective care and services. However, the activities of care and services presented here should shed light on what room there is for improvement when it comes to enabling persons with dementia to go on living at home.


Assuntos
Atenção à Saúde/normas , Demência/enfermagem , Serviços de Assistência Domiciliar , Serviços Comunitários de Saúde Mental/normas , Demência/reabilitação , Europa (Continente) , Acessibilidade aos Serviços de Saúde/normas , Serviços de Assistência Domiciliar/normas , Serviços de Assistência Domiciliar/estatística & dados numéricos , Humanos , Apoio Social
12.
J Adv Nurs ; 71(6): 1405-16, 2015 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-25430690

RESUMO

AIM: To investigate persons with dementia and their informal caregivers' views of inter-sectoral information, communication and collaboration throughout the trajectory of dementia care, in eight European countries. BACKGROUND: Living with dementia and being next of kin to a person with dementia means having to live through stages that have different characteristics, needs, challenges and requirements. DESIGN: Qualitative research. Focus groups were conducted in England, Estonia, Finland, France, Germany, The Netherlands, Spain and Sweden. METHODS: Persons with dementia and their informal caregivers (N = 137) participated in focus group interviews during 2011. Content analysis generated a tentative model of information, communication and collaboration for people with dementia and their caregivers, which was then tested. RESULTS: The core finding was that information, communication and collaboration were to be focused on the persons with dementia and the informal caregivers. Entering into the trajectory of the disease and its consequences was addressed as an important point of departure. The relation to professional care required establishing a trusting relationship, tailor-made intervention and a single person or organization to contact. Professional knowledge and commitment, variation in service and care adapted to needs were important. CONCLUSION: As focus of care is on the person with dementia and their informal caregivers, a dyadic approach seems most suitable for dementia care. A trusting relationship and a specific person or organization to contact seem to be indicators of best practice, as does adaptation to the needs of the person with dementia and their informal caregiver.


Assuntos
Cuidadores/psicologia , Demência/enfermagem , Demência/psicologia , Europa (Continente) , Grupos Focais , Humanos
13.
J Adv Nurs ; 71(6): 1363-77, 2015 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-25302473

RESUMO

AIMS: To investigate the extent of variability in individuals' and multidisciplinary groups' decisions about the most appropriate setting in which to support people with dementia in different European countries. BACKGROUND: Professionals' views of appropriate care depend on care systems, cultural background and professional discipline. It is not known to what extent decisions made by individual experts and multidisciplinary groups coincide. DESIGN: A modified nominal group approach was employed in eight countries (Estonia, Finland, France, Germany, the Netherlands, Spain, Sweden and the UK) as part of the RightTimePlaceCare Project. METHODS: Detailed vignettes about 14 typical case types of people with dementia were presented to experts in dementia care (n = 161) during November and December 2012. First, experts recorded their personal judgements about the most appropriate settings (home care, assisted living, care home, nursing home) in which to support each of the depicted individuals. Second, participants worked in small groups to reach joint decisions for the same vignettes. RESULTS: Considerable variation was seen in individuals' recommendations for more than half the case types. Cognitive impairment, functional dependency, living situation and caregiver burden did not differentiate between case types generating high and low degrees of consensus. Group-based decisions were more consistent, but country-specific patterns remained. CONCLUSIONS: A multidisciplinary approach would standardize the decisions made about the care needed by people with dementia on the cusp of care home admission. The results suggest that certain individuals could be appropriately diverted from care home entry if suitable community services were available.


Assuntos
Tomada de Decisões , Demência/terapia , Processos Grupais , Idoso , Demência/enfermagem , Europa (Continente) , Humanos
14.
J Adv Nurs ; 71(6): 1378-91, 2015 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-25403434

RESUMO

AIMS: To describe differences in caregiver burden and health-related quality of life of informal caregivers of people with dementia in eight European countries and assess changes after transition from home to institutional long-term care. BACKGROUND: Country differences in the experience of burden and health-related quality of life are rarely described. DESIGN: Prospective cohort study. METHODS: Data on burden and health-related quality of life were collected at baseline (conducted between November 2010-April 2012) and follow-up (after 3 months) using face-to-face interviews. Two groups of informal caregivers included those: (1) of people with dementia recently admitted to institutional long-term care facilities; and those (2) of people with dementia receiving home care. Statistical analyses focused on descriptive comparisons between groups and countries. RESULTS: Informal caregivers of about 2014 were interviewed. Informal caregivers of people with dementia at home experienced more burden compared with informal caregivers of recently institutionalised people with dementia. Almost no differences in health-related quality of life were found between groups. Large differences between countries on outcomes were found. Informal caregivers of people with dementia who made the transition to an institutional long-term care facility experienced a statistically significant decrease in burden and psychological distress at follow-up. CONCLUSION: Cross-country differences may be related to differences in health and social care systems. Taking this into account, informal caregiver interventions need to be tailored to (country specific) contexts and (individual) needs. Findings highlight the positive impact of admission to institutional long-term care on informal caregiver well-being.


Assuntos
Cuidadores/psicologia , Demência/enfermagem , Qualidade de Vida , Europa (Continente) , Humanos
15.
J Adv Nurs ; 71(6): 1338-50, 2015 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-25869186

RESUMO

AIM: To explore inter-country variation of factors associated with institutionalization of people with dementia. BACKGROUND: There is an urgent need for evidence on whether factors associated with admission to institutional dementia care are applicable across healthcare systems, as increasing evidence suggests that these factors could be country-specific. DESIGN: A prospective cohort study. METHOD: Primary data were collected in eight European countries, at baseline and after 3 months follow-up (November 2010-April 2012). The sample included 2014 dyads of people with dementia and their informal caregivers; 791 patients were recently institutionalized, 1223 patients lived at home and were at risk of institutionalization. Associations between care setting (institution vs. home) and factors shown to influence institutionalization (e.g. cognition, independence in activities of daily life, behaviour) were studied. RESULTS: Considerable differences were found between the eight countries in characteristics of people with dementia who had been recently admitted to ILTC. However, caregiver burden appeared the most consistent factor associated with institutionalization in all analyses. Indications for the importance of independence in activities of daily life were found as well, although country differences may be more prominent for this factor. CONCLUSION: Evidence was found for two common factors, crucial in the process of institutionalization across countries: caregiver burden and independency in activities of daily life. However, this study also suggests that admission to institutional dementia care is context-specific, as wide variation exists in factors associated with institutionalization across countries. Tailored best-practice strategies are needed to reflect variations in response to these needs.


Assuntos
Demência/enfermagem , Casas de Saúde , Admissão do Paciente , Humanos , Assistência de Longa Duração , Países Baixos
16.
J Adv Nurs ; 71(6): 1392-404, 2015 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-25091706

RESUMO

AIMS: To explore the perceptions of informal caregivers and healthcare professionals regarding potential reasons for the institutionalization of older persons with dementia in eight European countries. BACKGROUND: Healthcare professionals may have an important role in facilitating informal caregivers' decision-making regarding institutionalization. Little is known about the perceptions of informal caregivers and healthcare professionals prior to institutionalization. DESIGN: Cross-sectional survey in eight European countries (November 2010-January 2012). METHODS: Healthcare professionals reported why they clinically judged persons with dementia at risk for institutionalization. Informal caregivers reported potential reasons from their perspectives. Answers were openly coded and categorized. Variation between informal caregivers and healthcare professionals was investigated (agreement on at least one potential reason per case/proportion of maximum attainable kappa). RESULTS: Judgements of healthcare professionals and informal caregivers on 1160 persons with dementia were included. A total of 22 categories emerged. Approximately 90% of informal caregivers reported potential reasons. In 41% of the cases, informal caregivers and healthcare professionals agreed on at least one reason. Discrepancy was high for potential reasons related to caregiver burden. For the most frequent categories (caregiver burden, caregiver unable to provide care, neuropsychiatric symptoms, overall deterioration, care dependency), 24-41% of the attainable kappa was achieved. Differences between countries emerged indicating more favourable agreement in Finland, Sweden and Estonia and lowest agreement in England and Spain. CONCLUSION: Agreement between healthcare professionals and informal caregivers on potential reasons for institutionalization was low-to-moderate. Healthcare professionals are challenged to develop a detailed understanding of the perspectives and perceived burden of informal caregivers.


Assuntos
Atitude , Cuidadores/psicologia , Demência/fisiopatologia , Pessoal de Saúde/psicologia , Institucionalização , Idoso , Estudos Transversais , Demência/enfermagem , Europa (Continente) , Humanos , Fatores de Risco
17.
J Adv Nurs ; 71(6): 1351-62, 2015 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-25069529

RESUMO

AIM: To investigate agreement between: (1) expected reasons and actual reasons for admission of people with dementia according to informal caregivers; (2) scores on measurement instruments prior to admission and the actual reasons for admission according to informal caregivers. BACKGROUND: Timely admission of people with dementia is a crucial issue. Information is highly warranted on whether informal caregivers are capable of prior identification of causes of admission and, can thus be considered a reliable prospective source on causes of admission. DESIGN: A cohort study among informal caregivers of people with dementia who made a transition to institutional long-term care. METHODS: Qualitative data on the expected and actual reasons for admission were collected via open-ended questions at baseline and follow-up. Furthermore, at baseline, data were collected using measurement instruments to measure pre-admission characteristics. Interviews took place between November 2010-April 2012. After categorizing the answers, the agreement between the expected and actual reasons was calculated. Furthermore, bivariate associations were calculated between the actual reasons for admission and scores on corresponding measurement instruments. RESULTS/FINDINGS: For most informal caregivers, there was agreement between their statements on the expected reason and the actual reason for admission. A third of the caregivers showed no conformity. Bivariate associations showed that there is also agreement between the actual reasons for admission and scores on corresponding measurement instruments. CONCLUSION: Informal caregivers can be considered reliable sources of information regarding what causes the admission of a person with dementia. Professional care should anticipate informal caregivers' statements and collaborate with them to strive for timely and appropriate admission.


Assuntos
Cuidadores/psicologia , Demência/enfermagem , Admissão do Paciente , Idoso , Idoso de 80 Anos ou mais , Estudos de Coortes , Feminino , Humanos , Masculino
18.
J Adv Nurs ; 71(6): 1435-47, 2015 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-25403506

RESUMO

AIM: To assess which factors are associated with change in quality of life of people with dementia who have recently been admitted to long-term care facilities. BACKGROUND: Many people with dementia will be admitted to long-term care facilities at some point during their disease. It is currently unknown which factors are associated with improvement and/or deterioration of quality of life immediately following admission. DESIGN: An observational and longitudinal survey. METHODS: Data on 343 people with dementia who have been recently admitted to long-term care facilities across eight European countries were collected between November 2010-April 2012. Quality of life was assessed by people with dementia and their proxies using the 'Quality of Life-Alzheimer's Disease scale'. Explanatory variables included cognitive status, comorbidities, activities of daily living, depressive symptoms and neuropsychiatric symptoms. Descriptive and multilevel regression analyses were performed. RESULTS: Better cognitive abilities at baseline were associated with a decrease in self-reported quality of life. Greater dependency and more depressive symptoms at baseline were associated with declined proxy-reported quality of life. Furthermore, an increased dependency and an increase of depressive symptoms between baseline and follow-up were associated with a decreased proxy-reported quality of life. On an individual level, three groups were identified, namely people whose quality of life: (1) decreased; (2) stayed the same; and (3) increased. CONCLUSION: Cognitive functioning, functional rehabilitation and treatment of depressive symptoms should receive special attention. However, quality of life of people with dementia does not necessarily decrease after institutionalization.


Assuntos
Demência/fisiopatologia , Casas de Saúde , Admissão do Paciente , Qualidade de Vida , Idoso , Idoso de 80 Anos ou mais , Demência/psicologia , Feminino , Humanos , Assistência de Longa Duração , Masculino , Reprodutibilidade dos Testes
19.
BMC Public Health ; 12: 68, 2012 Jan 23.
Artigo em Inglês | MEDLINE | ID: mdl-22269343

RESUMO

BACKGROUND: Health care policies in many countries aim to enable people with dementia to live in their own homes as long as possible. However, at some point during the disease the needs of a significant number of people with dementia cannot be appropriately met at home and institutional care is required. Evidence as to best practice strategies enabling people with dementia to live at home as long as possible and also identifying the right time to trigger admission to a long-term nursing care facility is therefore urgently required. The current paper presents the rationale and methods of a study generating primary data for best-practice development in the transition from home towards institutional nursing care for people with dementia and their informal caregivers. The study has two main objectives: 1) investigate country-specific factors influencing institutionalization and 2) investigate the circumstances of people with dementia and their informal caregivers in eight European countries. Additionally, data for economic evaluation purposes are being collected. METHODS/DESIGN: This paper describes a prospective study, conducted in eight European countries (Estonia, Finland, France, Germany, Netherlands, Sweden, Spain, United Kingdom). A baseline assessment and follow-up measurement after 3 months will be performed. Two groups of people with dementia and their informal caregivers will be included: 1) newly admitted to institutional long-term nursing care facilities; and 2) receiving professional long-term home care, and being at risk for institutionalization. Data will be collected on outcomes for people with dementia (e.g. quality of life, quality of care), informal caregivers (e.g. caregiver burden, quality of life) and costs (e.g. resource utilization). Statistical analyses consist of descriptive and multivariate regression techniques and cross-country comparisons. DISCUSSION: The current study, which is part of a large European project 'RightTimePlaceCare', generates primary data on outcomes and costs of long-term nursing care for people with dementia and their informal caregivers, specifically focusing on the transition from home towards institutional care. Together with data collected in three other work packages, knowledge gathered in this study will be used to inform and empower patients, professionals, policy and related decision makers to manage and improve health and social dementia care services.


Assuntos
Demência , Serviços de Assistência Domiciliar , Institucionalização , Casas de Saúde , Transferência de Pacientes , Idoso , Cuidadores , Estudos de Coortes , Efeitos Psicossociais da Doença , Europa (Continente) , Feminino , Humanos , Masculino , Estudos Prospectivos , Qualidade da Assistência à Saúde
20.
Aging Cell ; 21(5): e13607, 2022 05.
Artigo em Inglês | MEDLINE | ID: mdl-35397197

RESUMO

Age-related changes in human T-cell populations are important contributors to immunosenescence. In particular, terminally differentiated CD8+ effector memory CD45RA+ TEMRA cells and their subsets have characteristics of cellular senescence, accumulate in older individuals, and are increased in age-related chronic inflammatory diseases. In a detailed T-cell profiling among individuals over 65 years of age, we found a high interindividual variation among CD8+ TEMRA populations. CD8+ TEMRA proportions correlated positively with cytomegalovirus (CMV) antibody levels, however, not with the chronological age. In the analysis of over 90 inflammation proteins, we identified plasma TRANCE/RANKL levels to associate with several differentiated T-cell populations, including CD8+ TEMRA and its CD28- subsets. Given the strong potential of CD8+ TEMRA cells as a biomarker for immunosenescence, we used deep-amplicon bisulfite sequencing to match their frequencies in flow cytometry with CpG site methylation levels and developed a computational model to predict CD8+ TEMRA cell proportions from whole blood genomic DNA. Our findings confirm the association of CD8+ TEMRA and its subsets with CMV infection and provide a novel tool for their high throughput epigenetic quantification as a biomarker of immunosenescence.


Assuntos
Infecções por Citomegalovirus , Imunossenescência , Idoso , Antígenos CD28/metabolismo , Linfócitos T CD8-Positivos , Infecções por Citomegalovirus/genética , Epigênese Genética , Humanos , Memória Imunológica , Subpopulações de Linfócitos T
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