Associated factors of suicidal ideation among older persons with dementia living at home in eight European countries.

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.

Emergency department and hospital admissions among people with dementia living at home or in nursing homes: results of the European RightTimePlaceCare project on their frequency, associated factors and costs.

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.

Exploring the abilities of performing complex daily activities in dementia: the effects of supervision on remaining independent.

Objectives: The aim of this study was to explore the remaining abilities of people with dementia (PwD) in performing daily activities.Method: Informal carers of community-residing PwD were recruited across England via mail out and carer support groups. Carers completed the revised Interview for Deteriorations in Daily Living Activities in Dementia 2 to rate the PwD's initiative and performance of daily activities. Six complex instrumental activities of daily living (IADLs) were selected: shopping, preparing a hot drink, using the telephone, preparing a cold meal, house work, and engaging in social activities, all of which were broken down into three sub-tasks. Data were analysed using Chi-square tests and linear regression analysis, assessing the contributions of hours of IADL care, hours of supervision, and dementia stage for each activity.Results: 581 carers of people with mild, moderate, and severe dementia completed the questionnaire. The ability to perform individual activities deteriorated from mild to moderate to severe dementia, with PwD remaining the most able to perform subtasks of preparing a hot drink and a cold meal. Subtask performance varied across activities, with some better maintained than others across severity stages. Linear regression models showed that hours of supervising PwD explained a greater proportion of the variance of each IADL than IADL care hours.Conclusion: PwD should be supervised to continue engaging in activities, thereby avoiding performing everything for the PwD. Findings can have implications for PwD living in nursing homes, and future research should explore the remaining IADL abilities of nursing home residents.

Predictors of finance management in dementia: managing bills and taxes matters.

ABSTRACTObjectives:Finance management skills deteriorate early on in dementia, and can influence the ability to maintain control over personal affairs. The aim of this study was to assess the contributions of different types of cognition and motor functioning to finance management. DESIGN: Cross-sectional analysis using secondary data. SETTING: Community living. PARTICIPANTS: Baseline data from the Uniform Data Set from the National Alzheimer's Coordinating Centers were obtained and extracted up until December 2016. MEASUREMENTS: Measures on everyday functioning (Functional Assessment Questionnaire) and cognition (memory, executive functioning, and language), the Clinical Dementia Rating scale, and questions on Parkinsonian motor symptoms (gait disturbance, falls, tremors, and slowness) were included. Data were analyzed using bivariate correlation and linear regression analyses. RESULTS: A total of 9,383 participants were included in the analysis (Alzheimers disease (AD) = 8,201; behavioral variant fronto-temporal dementia (bvFTD) = 796; Dementia with Lewy Bodies (DLB) = 386). Cognition and motor functioning varied significantly across AD, bvFTD, and DLB, with poorer motor functioning and poorer finance management skills in DLB than in AD and bvFTD. In the regression models, slowness, verbal fluency, executive functioning, and language, followed by age, gender, and diagnosis accounted for 13.8% of the variation in managing bills, and for 11.4% of the variation in managing taxes. CONCLUSION: Maintaining finance management abilities for as long as possible is important for people with dementia, to avoid potential financial exploitation. Findings from this study highlight avenues to pursue to delay deterioration in managing bills and taxes, and help maintain financial control.

Applying a new concept of embedding qualitative research: an example from a quantitative study of carers of people in later stage dementia.

BACKGROUND: Qualitative methods are increasingly included in larger studies to provide a richer understanding of people's experience. This paper explores the potential of using a novel approach to embedded qualitative design as part of an observational study examining the effectiveness of home support for people in later stage dementia in England. The method involved collecting and analysing unsolicited conversational comments made by participants as they completed standardised measures. An evaluation of the method is presented using the voices of participants to illustrate its potential. METHODS: The conversations of 17 carers recruited to an observational study were audio recorded to gather commentary made while completing a structured interview. Data were interrogated using thematic analysis to investigate the feasibility of conducting an embedded qualitative study, the potential richness of the material and participants' reactions to formal questioning and participating in research. RESULTS: The findings revealed that qualitative data were available from this approach. Analysis generated three themes from carers: conflicting carer emotions; the importance of maintaining normality and agency within day-to-day life; and tensions between these desires and making use of formal services. Important issues for carers were revealed establishing the benefit of using the method. The advantages of exploiting unsolicited conversation included enhancing understanding of people's lived experience, reducing participant burden in research and easing the process of data collection. In addition, it provided an opportunity to evaluate individuals' experience of the research process. CONCLUSIONS: The findings demonstrate how unsolicited comments during structured interviews may appear incidental but can reveal important aspects of living with dementia. The method also emphasised methodological challenges for research in dementia, including the influence and impact of the research context. Further research is required to evaluate the method with other groups including people with dementia themselves.

Inter-rater agreement of the Quality of Life-Alzheimer's Disease (QoL-AD) self-rating and proxy rating scale: secondary analysis of RightTimePlaceCare data.

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.

Initiating activities of daily living contributes to well-being in people with dementia and their carers.

OBJECTIVE: Problems with everyday functioning are linked to reduced well-being in people with dementia (PwD) and their carers. However, previous research has almost solely investigated the performance of everyday activities, and global functioning without analysing individual activities. This study explored how deficits in initiating and performing individual activities were associated with carer burden and poorer quality of life of carers and PwD. METHODS: Carers of people with mild dementia were recruited via 10 National Health Service Trusts, as well as through attending six carer support groups. Carers were asked to complete the revised Interview for Deteriorations in Daily Living Activities in Dementia 2 (R-IDDD2), and measures on carer burden, well-being, and person with dementia well-being. Data were analysed using correlation analysis. RESULTS: Two hundred and seventy-two carers completed the R-IDDD2. Carers were grouped into those with low or high ratings of well-being based on the mean scores. All but three activities on the initiative and/or performance scale were significantly associated with carer burden and carer and PwD quality of life. Engaging in hobbies and maintaining an active social life were most strongly associated with carer and PwD well-being. Initiating computer use, driving, and medication management were not related to carer burden. CONCLUSIONS: Findings from this study can have direct implications for improving care management early in the disease. Post-diagnostic support needs to provide more opportunities for PwD, and their carers, to engage in social groups, whilst interventions targeted at living well with dementia need to particularly improve the initiative of engaging in individual hobbies. Copyright © 2017 John Wiley & Sons, Ltd.

People with dementia and carer preferences for home support services in early-stage dementia.

OBJECTIVES: To examine people with dementia and carer preferences for home support attributes in early-stage dementia, building on the paucity of evidence in this area. METHOD: Preferences from 44 people with dementia and 103 carers, recruited through memory clinics and an online questionnaire, were assessed with a Discrete Choice Experiment survey, with attributes informed by an evidence synthesis and lay consultation. A conditional logit model was used to estimate preference weights for the attributes within a home support 'package'. RESULTS: The most preferred attributes were support with personal feelings and concerns, provided by a trained counsellor at home (coefficient 0.67, p = <0.001) and information on coping with dementia, provided by an experienced worker at home (coefficient 0.59, p = <0.001). However, for people with dementia, opportunities for social and recreational activities were considered the most important (coefficient 0.48, p = <0.001). CONCLUSIONS: These preferences concur with emerging evidence on psychosocial interventions in dementia. Support with personal feelings, information and social engagement are important components. Additionally, knowledge of preferences of people with dementia and their carers can identify other attributes that may be important to effectiveness in 'living well' but for which there remains limited evidence.

Practitioners preferences of care coordination for older people: A discrete choice experiment.

These findings demonstrate the importance of organisations providing care coordination for older people receiving long-term funding. Further research is required to investigate the influence of service setting on practitioner preferences. This study explored practitioner preferences about the relative value of attributes of care coordination services for older people. A Discrete Choice Experiment (DCE) survey was used to identify the views of 120 practitioners from 17 services in England in 2015. The survey design was informed by an analysis of standards of care coordination, a postal survey and a consultation with carers of older people. Results of the DCE survey were supplemented by a content analysis of qualitative comments and fieldwork notes. Most respondents were over 30 years of age, female and almost half worked part-time. Continuity of care (care provided by the same care coordinator) and the ability to access the range of services outlined in the care plan were the most important service attributes. Service setting influenced practitioner preferences. Those in specialist services for people with dementia identified the length of time a service was provided as another important attribute. The DCE methodology has provided the opportunity to systematically canvas practitioner preferences.

Hierarchical Decline of the Initiative and Performance of Complex Activities of Daily Living in Dementia.

OBJECTIVES: While basic activities of daily living hierarchically decline in dementia, little is known about the decline of individual instrumental activities of daily living (IADLs). The objective of this study was to assess initiative and performance deficits in IADLs in dementia. METHODS: A total of 581 carers completed the revised Interview for Deterioration in Daily Living Activities in Dementia 2 to rate their relative's everyday functioning. RESULTS: Initiating and performing IADLs deteriorated hierarchically, while people with dementia were consistently most impaired in initiating using the computer and managing finances. Initiating preparing a cold or hot meal and managing finances were more impaired than their performance, whereas performing maintaining an active social life for example were more impaired than their initiative. CONCLUSION: Findings can help identify the severity of dementia by understanding deficits in initiative and performance. This study has implications for the development of targeted interventions depending on the stage of dementia.

Evaluating the effectiveness of different approaches to home support for people in later stage dementia: a protocol for an observational study.

BACKGROUND: Dementia is a major health problem with a growing number of people affected by the condition, both directly and indirectly through caring for someone with dementia. Many live at home but little is known about the range and intensity of the support they receive. Previous studies have mainly reported on discrete services within a single geographical area. This paper presents a protocol for study of different services across several sites in England. The aim is to explore the presence, effects, and cost-effectiveness of approaches to home support for people in later stage dementia and their carers. METHODS: This is a prospective observational study employing mixed methods. At least 300 participants (people with dementia and their carers) from geographical areas with demonstrably different ranges of services available for people with dementia will be selected. Within each area, participants will be recruited from a range of services. Participants will be interviewed on two occasions and data will be collected on their characteristics and circumstances, quality of life, carer health and burden, and informal and formal support for the person with dementia. The structured interviews will also collect qualitative data to explore the perceptions of older people and carers. CONCLUSIONS: This national study will explore the components of appropriate and effective home support for people with late stage dementia and their carers. It aims to inform commissioners and service providers across health and social care.

Experience of burden in carers of people with dementia on the margins of long-term care.

OBJECTIVES: This study aimed to identify the factors determining carer burden in a group of carers supporting people with dementia (PwD) deemed to be at high risk of moving to long-term residential or nursing home care. DESIGN: National data collected as part of the European RightTimePlaceCare project were analysed. This included 81 dyads of community-dwelling people with dementia and their informal carers. METHODS: Structured face-to-face interviews were conducted in North West England between June 2011 and April 2012. Interviews collected data relating to the person with dementia (cognitive functioning, activities of daily living, neuropsychiatric symptoms and formal and informal dementia care resource use) and carers' level of burden (22-item Zarit Burden Index), hours spent caring and availability of additional informal support. RESULTS: Logistic regression analysis identified five factors associated with high carer burden: neuropsychiatric symptomatology in the PwD, intensive supervision of the PwD by the carer, being a female carer, being an adult-child carer and absence of informal carer support. Use of home care or day care services was unrelated to burden. CONCLUSION: Support programmes focusing on challenging behaviours and risk management may be of benefit to carers. More individually tailored interventions for specific carer groups including female or younger carers may be warranted. The implementation of peer support networks could be beneficial to carers who lack additional family support.

Depressive symptomatology and associated factors in dementia in Europe: home care versus long-term care.

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.

Depressive symptomatology in severe dementia in a European sample: prevalence, associated factors and prescription rate of antidepressants.

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.

Activities of daily living and quality of life across different stages of dementia: a UK study.

OBJECTIVES: People with dementia (PwD) require an increasing degree of assistance with activities of daily living (ADLs), and dependency may negatively impact on their well-being. However, it remains unclear which activities are impaired at each stage of dementia and to what extent this is associated with variations in quality of life (QoL) across the different stages, which were the two objectives of this study. METHODS: The sample comprised 122 PwD, and their carers, either living at home or recently admitted to long-term care. Measures of cognition and QoL were completed by the PwD and proxy measures of psychopathology, depression, ADLs and QoL were recorded. Using frequency, correlation and multiple regression analysis, data were analysed for the number of ADL impairments across mild, moderate and severe dementia and for the factors impacting on QoL. RESULTS: ADL performance deteriorates differently for individual activities, with some ADLs showing impairment in mild dementia, including dressing, whereas others only deteriorate later on, including feeding. This decline may be seen in the degree to which carers perceive ADLs to explain the QoL of the PwD, with more ADLs associated with QoL in severe dementia. RESULTS of the regression analysis showed that total ADL performance however was only impacting on QoL in moderate dementia. CONCLUSION: Knowledge about performance deterioration in different ADLs has implications for designing interventions to address specific activities at different stages of the disease. Furthermore, findings suggest that different factors are important to consider when trying to improve or maintain QoL at different stages.

Care and Service at Home for Persons With Dementia in Europe.

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.

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.

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. 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.

Deterioration of basic activities of daily living and their impact on quality of life across different cognitive stages of dementia: a European study.

BACKGROUND: Performing basic activities of daily living (ADLs) is one of the major difficulties encountered in dementia, which can have considerable negative impacts on the quality of life (QoL) of people with dementia (PwD). However, the extent to which basic ADL performance deteriorates across mild, moderate, and severe dementia is little examined and its impact, together with depression and neuropsychiatric behavior, upon QoL, is of considerable relevance across European countries. METHODS: Data were drawn from people living in the community who were participants in a large-scale European study on transition from community living to care homes of PwD. PwD completed measures on cognitive functioning and QoL, and informal carers reported upon QoL, depressive symptomatology, psychopathology, and functional ability of the PwD. RESULTS: ADL performance deteriorated differently for each activity. In particular, toileting, transfer, and feeding remained relatively intact throughout, whereas performance on bathing and dressing deteriorated to a greater extent from mild to severe dementia. It appears that continence was not affected by the stage of dementia with similar levels of impairment. Basic ADL performance impacted to different degrees on QoL across dementia stages and countries. CONCLUSIONS: Interventions aimed at maintaining independence or QoL need to target different ADLs across different dementia stages and perhaps also tailor interventions to the context of different countries. Findings contribute to the development of non-pharmaceutical interventions and governmental pledges to promote independence in dementia.