Reasons for Institutionalization of People With Dementia: Informal Caregiver Reports From 8 European Countries

Objectives: To explore reasons for institutionalization of people with dementia according to informal caregivers as well as variation in reasons between countries. Design: An explorative cross-sectional study was conducted in 8 European countries. Setting: Per country, a minimum of 3 long term care facilities, offering care and accommodation as a package, participated in this study. Participating countries were selected to represent different geographic areas in Europe. Participants: Of the 791 informal caregivers involved in the RightTimePlaceCare project of people with dementia who were recently admitted to a long term care facility, 786 were included for this study. Measurements: As part of a semistructured interview, informal caregivers were asked the main reason for institutionalization in an open-ended question. Answers were categorized according to a conventional coding approach. All reasons were then quantified and tested. Results: Mainly patient-related reasons were stated, such as neuropsychiatric symptoms (25%), care dependency (24%), and cognition (19%). Neuropsychiatric symptoms were among the most often mentioned reasons in most countries. Besides patient-related reasons, caregiver burden and the inability of the informal caregiver to care for the patient were stated as reasons (both 15%). Further analyses showed countries differ significantly in reasons according to informal caregivers. Additionally, reasons were analyzed for spouses and child-caregivers, showing that spouses more often stated reasons related to themselves compared with child-caregivers. Conclusion: Multiple reasons contribute to the institutionalization for people with dementia, with several factors that may influence why there were country differences. Variation in the organization of dementia care and cultural aspects, or the relationship between the informal caregiver and person with dementia may be factors influencing the reasons. Because of a wide variation in reasons between countries, no one-size-fits-all approach can be offered to guide informal caregivers when facing the possibility of institutionalization of the person with dementia. (C) 2014 - American Medical Directors Association, Inc. All rights reserved

The Importance of Spiritual Education of Young People with Intellectual Potential

The relevance of this problem lies in the fact that the Spiritual and moral ideal is a value passed from ancestors to generations. The traditions of the nation and archaeological sites play an important role in this. After all, national traditions and archaeological sites are not only a factor reflecting the cultural life of a nation, but also a source of evidence of its spiritual values. Therefore, today it is possible to ensure the inheritance of the spiritual and moral ideal, preserving traditions and archaeological monuments. Preserving these monuments will enable future generations to learn about the ideals that our people value.Актуальность данной проблемы заключается в том, что духовно-нравственный идеал – это ценность, передаваемая от предков новым поколениям. Важную роль в этом играют традиции нации и археологические памятники. Ведь национальные традиции и археологические памятники – это не только фактор, отражающий культурную жизнь нации, но и источник свидетельств ее духовных ценностей. Следовательно, сегодня можно обеспечить наследование духовно-нравственного идеала, сохранив традиции и археологические памятники. Сохранение этих памятников позволит будущим поколениям узнать об идеалах, которые ценит наш народ

Changes in caregiver burden and health-related quality of life of informal caregivers of older people with Dementia: evidence from the European RightTimePlaceCare prospective cohort study

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

Inter-country exploration of factors associated with admission to long-term institutional dementia care: Evidence from the RightTimePlaceCare study

AimTo explore inter-country variation of factors associated with institutionalization of people with dementia. BackgroundThere 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. DesignA prospective cohort study. MethodPrimary data were collected in eight European countries, at baseline and after 3months 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. ResultsConsiderable 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. ConclusionEvidence 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

Quality of Life and Quality of Care for People With Dementia Receiving Long Term Institutional Care or Professional Home Care: The European RightTimePlaceCare Study

Objectives: To explore how quality of life (QoL) and quality of care (QoC) for people with dementia (PwD)vary across 8 European countries; to explore how QoL and QoC for PwD vary across living arrangements;and to assess the association between QoL and QoC.Design: Cross-sectional survey.Setting: Institutional long term care and home care in 8 European countries (England, Estonia, Finland,France, Germany, the Netherlands, Spain, and Sweden).Participants: PwD receiving formal home care but at risk for admission to an institutional setting, andPwD who were recently admitted.Measurements: QoL was assessed by the PwD and by their best informed proxies using the Quality of Life-Alzheimer’s Disease scale (QoL-AD) (range 13e52). QoC was measured using quality of care indicators(eg, the presence of depressive symptoms, the presence of pressure ulcers).Results: A total of 1123 PwD living at home (mean age 82.2, 63%women) and 791 PwD living in institutionalcare (mean age 84.1, 74% women) participated. QoL of PwD was most often rated highest in Sweden andEnglandandlowest in Estonia andSpain.No differences inQoLwere detectedamong the settings. For theQoCindicators, no consistent patternswere visible in such away that certain countries or settings scored "higher"or "lower." The presence of depressive symptomswasmost consistently associated with lower QoL (P.001).Conclusion: There is great variation in QoL and QoC scores among European countries and settings. Togain insight into the underlying causes of these differences, more knowledge is needed about the effectof different national health care systems and dementia strategies on QoL and QoC indicators. Depressivesymptoms were associated with QoL, and executing longitudinal studies investigating which factors areassociated with change in QoL is highly recommended

The association between physical dependency and the presence of neuropsychiatric symptoms, with the admission of people with dementia to a long-term care institution: A prospective observational cohort study

Background: Dementia is a progressive neurological disorder that causes a high degree of dependency. This dependency has been defined as an increased need for assistance due to deterioration in cognition and physical functioning, and changes in behavior. Highly dependent people with dementia are more likely to be institutionalized. Objectives: To investigate the association between specific categories of physical dependency and the presence of neuropsychiatric symptoms in people with dementia admitted to a long-term care institution. Design: A prospective observational cohort study. Settings: Home care and long-term care institutions in eight European countries. Participants: People with dementia living at home but at risk of institutionalization and recently institutionalized people with dementia. Method: Baseline and 3-month follow-up interviews were performed between November, 2010 and April, 2012. The sample consisted of 116 recently institutionalized dementia sufferers and 949 people with dementia still living at home. Physical dependency was measured using the Katz Activity of Daily Living index, and neuropsychiatric symptoms were assessed through The Neuropsychiatric Inventory. Specific categories of dependency were analyzed by performing a logistic regression analysis. This followed examination of baseline characteristics to define the degree of physical dependency, as factors associated with institutionalization, and evaluation of the same characteristics at 3-month follow-up to detect changes in the degree of physical dependency and neuropsychiatric symptoms associated with recent admission to a long-term care institution. Results: Toileting, dressing and continence dependency was higher in institutionalized people than in those receiving home-care. Delusion, hallucination, agitation, anxiety, apathy, motor-disturbances, night-time behavior and eating disorders were also worse in the institutionalized. Logistic regression analysis showed that independent factors significantly associated with being recently institutionalized were toileting (odds ratio = 2.3; 95% confidence interval = 1.43-3.71) and motor disturbances (odds ratio = 1.81; 95% confidence interval = 1.15-2.87). Conclusions: This study supports the association between type and degree of physical dependency in people with dementia and long-term institutionalization. Institutionalization is associated with physical dependency and the presence of neuropsychiatric symptoms. (C) 2015 Elsevier Ltd. All rights reserved

Non-pharmacological interventions as a best practice strategy in people with dementia living in nursing homes. A systematic review

Background: Two-thirds of nursing home residents suffer from dementia and there is a need for effective and efficient interventions with meaningful outcomes for these individuals. This study aims to identify current best practices in non-pharmacological interventions in nursing homes. Methods: A systematic literature review was conducted, following the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) declaration guideline. Studies and Randomized Controlled Trials (RCT) evaluating non-pharmacological interventions focused on improving the Quality of Care (QoC) and/or Quality of Life (QoL) of people with dementia (PwD) living in nursing homes were included. For individual study evaluation, the Cochrane Collaboration risk of bias assessment tool was used. Results: A total of 31 articles were included and five main categories emerged: psychosocial and educational, physical activity, sensorial therapies, staff-focused interventions and complex interventions. Psychosocial interventions were the most exhaustively studied and evaluated interventions. Few studies related to physical therapy were identified and they did not provide enough evidence of their effectiveness. Therapeutic touch was revealed to have positive effects on residents with dementia. Conclusion: Psychosocial interventions have been shown to have the potential to improve the QoL and QoC of people with dementia in nursing homes. Before implementation of the intervention, it is recommended that activities are adjusted according to residents' characteristics and external factors controlled to achieve effectiveness and to structure a well-designed intervention. However, there is not enough evidence to support the effectiveness of non-pharmacological interventions in general. Further well-designed research is needed on non-pharmacological interventions in nursing facilities. (C) 2014 Elsevier Masson SAS and European Union Geriatric Medicine Society. All rights reserved

Older persons with dementia at risk for institutionalization in eight European countries: a cross-sectional study on the perceptions of informal caregivers and healthcare professionals

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

Change in quality of life of people with dementia recently admitted to long-term care facilities

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. BackgroundMany 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. DesignAn observational and longitudinal survey. MethodsData 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. ResultsBetter 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. ConclusionCognitive 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