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Background: As populations age, multimorbidity (the presence of two or more chronic morbidities) is increasingly more common. These evolving demographics demand further research into the identification of morbidity patterns in different settings as well as the longitudinal effects of these patterns., Methods: Prospectively collected data on 12,755 older persons aged 65+ years were derived from The Older Persons and Informal Caregivers Survey Minimum DataSet (TOPICS-MDS, www.topics-mds.eu). Latent class analyses were performed to identify unobserved relationship patterns between morbidities in older persons. Using linear mixed models, the average difference in health-related quality of life (EQ-5D) and general quality of life scores (Cantril's Self Anchoring Ladder) as well as limitations in Activities of Daily Living and Instrumental Activities of Daily Living (ADL/IADL) were examined over a 12-month period., Results: Five multimorbidity patterns were identified: sensory (n = 3882), cardio-metabolic (n = 2627), mental health (n = 920), osteo-articular (n = 4486), and system decline (n = 840). Relative to older persons in the sensory group, multimorbidity patterns did not have a strong effect on health-related quality of life, general quality of life or ADL/IADLs over a one-year period., Conclusions: The observed multimorbidity patterns are similar to others based on different methodologies and study populations. When examining the effect of such patterns on quality of life, the EQ-5D and Cantril's Ladder may be insufficient outcome measures. Further investigations into the prognostic value of morbidity patterns would be of benefit., Competing Interests: Declaration of Competing Interest The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper., (Copyright © 2023. Published by Elsevier B.V.)

Purpose: The Quality of Life Alzheimer's Disease Scale (QoL-AD) is commonly used to assess disease specific health-related quality of life (HRQoL) as rated by patients and their carers. For cost-effectiveness analyses, utilities based on the EQ-5D are often required. We report a new mapping algorithm to obtain EQ-5D indices when only QoL-AD data are available., Methods: Different statistical models to estimate utility directly, or responses to individual EQ-5D questions (response mapping) from QoL-AD, were trialled for patient-rated and proxy-rated questionnaires. Model performance was assessed by root mean square error and mean absolute error., Results: The response model using multinomial regression including age and sex, performed best in both the estimation dataset and an independent dataset., Conclusions: The recommended mapping algorithm allows researchers for the first time to estimate EQ-5D values from QoL-AD data, enabling cost-utility analyses using datasets where the QoL-AD but no utility measures were collected.

Objective: To identify determinants within 3 different domains (ie, somatic comorbidities, cognitive functioning, and neuropsychiatric symptoms [NPS]) of health-related quality of life (HRQoL) over time in memory clinic patients without dementia., Methods: This longitudinal multicenter cohort study with a 3-year observation period recruited 315 individuals (age: 69.8 ± 8.6, 64.4% males, Mini-Mental State Examination score 26.9 ± 2.6). A multivariable explanatory model was built using linear mixed effects models (forward selection per domain) to select determinants for self-perceived HRQoL over time, as measured by the EuroQoL-5D visual analogue scale (EQ VAS)., Results: Mean HRQoL at study entry was 69.4 ± 15.6. The presence of agitation, appetite and eating abnormalities, and eyes/ears/nose (ie, sensory impairment) comorbidities were associated with a change in HRQoL over time. Agitation was most strongly associated with HRQoL over time., Conclusions: The association of somatic comorbidities and NPS in memory clinic patients with course of HRQoL shows that these should receive more awareness, detection, and monitoring by clinicians.

The current meta-analysis first aimed to quantify the overall effect of physical exercise training on the quality of life (QoL) in healthy older adults. Second, the effects on the social, physical, and psychological QoL were assessed. In total, 16 randomized controlled trials were included. The primary analysis showed a medium effect of physical exercise training on QoL in healthy older adults (standard mean difference [SMD] = 0.38, confidence interval, CI, [0.18, 0.59], p < .05). The secondary analyses showed a positive medium effect of physical exercise training on the physical component of QoL (SMD = 0.39, CI [0.17, 0.60], p < .05), and a positive medium effect of physical exercise training on the psychological component of QoL (SMD = 0.348, CI [0.125, 0.570], p < .05), and no significant effect of physical exercise training on the social component of QoL was observed (SMD = 0.16, CI [-0.07, 0.38], p = .17). These findings warrant implementation efforts pertaining to exercise training for older adults to improve the QoL in our aging societies.

Background: Quality of Life (QoL) is an important outcome measure in dementia, particularly in the context of interventions. Research investigating longitudinal QoL in dementia with Lewy bodies (DLB) is currently lacking., Objective: To investigate determinants and trajectories of QoL in DLB compared to Alzheimer's disease (AD) and controls., Methods: QoL was assessed annually in 138 individuals, using the EQ5D-utility-score (0-100) and the health-related Visual Analogue Scale (VAS, 0-100). Twenty-nine DLB patients (age 69±6), 68 AD patients (age 70±6), and 41 controls (age 70±5) were selected from the Dutch Parelsnoer Institute-Neurodegenerative diseases and Amsterdam Dementia Cohort. We examined clinical work-up over time as determinants of QoL, including cognitive tests, neuropsychiatric inventory, Geriatric Depression Scale (GDS), and disability assessment of dementia (DAD)., Results: Mixed models showed lower baseline VAS-scores in DLB compared to AD and controls (AD: β±SE = -7.6±2.8, controls: β±SE = -7.9±3.0, p < 0.05). An interaction between diagnosis and time since diagnosis indicated steeper decline on VAS-scores for AD patients compared to DLB patients (β±SE = 2.9±1.5, p < 0.1). EQ5D-utility-scores over time did not differ between groups. Higher GDS and lower DAD-scores were independently associated with lower QoL in dementia patients (GDS: VAS β±SE = -1.8±0.3, EQ5D-utility β±SE = -3.7±0.4; DAD: VAS = 0.1±0.0, EQ5D-utility β±SE = 0.1±0.1, p < 0.05). No associations between cognitive tests and QoL remained in the multivariate model., Conclusion: QoL is lower in DLB, while in AD QoL shows steeper decline as the disease advances. Our results indicate that non-cognitive symptoms, more than cognitive symptoms, are highly relevant as they impact QoL.

ABSTRACTBackground:Dementia is a neurodegenerative syndrome that interferes with multiple aspects of life, including cognition, daily functioning, and behavior. Despite the large heterogeneity in symptom development, these three domains are seldom studied simultaneously. This study investigates how trajectories of these domains are interrelated within individuals over time, and how they in turn are related to dementia severity and quality of life (QoL)., Methods: We used data from a longitudinal clinical cohort study, including 331 dementia patients. Cognitive status was measured using the Mini-Mental State Examination, daily functioning was measured with the disability assessment for dementia and neuropsychiatric symptoms (NPS) were scored using the neuropsychiatric inventory. We investigated the relationships in the time course of the various dementia domains using random effects multilevel models and parallel-process growth models., Results: Changes in cognition and daily functioning were highly correlated over time (r = 0.85, p < 0.01), as were changes in NPS and functioning (r = -0.60, p < 0.01), while changes in cognition and NPS were not (r = -0.20, p = 0.06). All three domains were strongly associated with dementia severity over time (p < 0.01). Decreased functioning and increased NPS were both associated with decreased QoL (β = 2.97, p < 0.01 and β = -2.41, p < 0.01, respectively), while cognition was not (β = 0.01, p = 0.93)., Conclusion: This study demonstrates the heterogeneity of dementia progression between individuals and between different dementia domains within individuals. To improve our understanding of dementia progression, future research should embrace a broader perspective encompassing multiple outcome measures along with the patient's profile, including neurological factors as well as physical, social, and psychiatric health.

Background: The number of older cancer patients is rising. Especially in older people, treatment considerations should balance the impact of disease and treatment on quality of life (QOL) and survival. How a cancer diagnosis in older people interacts with concomitant frailty to impact on QOL is largely unknown. We aimed to determine the association between frailty and QOL among community-dwelling older people aged 65 years or above with and without a cancer diagnosis cross-sectionally and at 12 months follow-up., Methods: Data were derived from the TOPICS-MDS database. Frailty was quantified by a frailty index (FI). QOL was measured with the subjective Cantril's Self Anchoring Ladder (CSAL, range: 0-10) and the health-related EuroQol-5D (EQ-5D, range:-0.33-1.00) at baseline and after 12 months. To determine associations, linear mixed models were used., Results: 7493 older people (78.6±6.4 years, 58.4% female) were included. Dealing with a cancer diagnosis (n = 751) was associated with worse QOL both at baseline (CSAL:-0.25 (95%-CI:-0.36;-0.14), EQ-5D:-0.03 (95%-CI:-0.05;-0.02)) and at follow-up (CSAL:-0.13 (95%-CI:-0.24;-0.02), EQ-5D:-0.02 (95%-CI:-0.03;-0.00)). A ten percent increase in frailty was also associated with a decrease in QOL at baseline (CSAL:-0.35 (95%-CI:-0.38;-0.32), EQ-5D:-0.12 (95%-CI:-0.12;-0.11)) and follow-up (CSAL:-0.27 (95%-CI:-0.30;-0.24), EQ-5D:-0.07 (95%-CI:-0.07;-0.06)). When mutually adjusting for frailty and a cancer diagnosis, associations between a cancer diagnosis and QOL only remained significant for CSAL at baseline (-0.14 (95%-CI:-0.25;-0.03)), whereas associations between frailty and QOL remained significant for all QOL outcomes at baseline and follow-up. No statistical interactions between cancer and frailty in their combined impact on QOL were found., Conclusions: Cancer diagnosis and frailty were associated with worse health-related and self-perceived QOL both at baseline and at follow-up. Differences in QOL between older people with and without a cancer diagnosis were explained to a large extent by differences in frailty levels. This stresses the importance to take into account frailty in routine oncologic care.

Background: As populations age, chronic geriatric conditions linked to progressive organ failure jeopardize health-related quality of life (HRQoL). Thus, this research assessed the validity and applicability of the EQ-5D (a common HRQoL instrument) across four major chronic geriatric conditions: hearing issues, joint damage, urinary incontinence, or dizziness with falls., Methods: The study sample comprised 25,637 community-dwelling persons aged 65 years and older residing in the Netherlands (Data source: TOPICS-MDS, www.topics-mds.eu ). Floor and ceiling effects were examined. To assess convergent validity, random effects meta-correlations (Spearman's rho) were derived between individual EQ-5D domains and related survey items. To further examine construct validity, the association between sociodemographic characteristics and EQ-5D summary scores were assessed using linear mixed models. Outcomes were compared to the overall study population as well as a 'healthy' subgroup reporting no major chronic conditions., Results: Whereas ceiling effects were observed in the overall study population and the 'healthy' subgroup, such was not the case in the geriatric condition subgroups. The majority of hypotheses regarding correlations between survey items and sociodemographic associations were supported. EQ-5D summary scores were lower in respondents who were older, female, widowed/single, lower educated, and living alone. Increasing co-morbidity had a clear negative effect on EQ-5D scores., Conclusion: This study supported the construct validity of the EQ-5D across four major geriatric conditions. For older persons who are generally healthy, i.e. reporting few to no chronic conditions, the EQ-5D confers poor discriminative ability due to ceiling effects. Although the overall dataset initially suggested poor discriminative ability for the EQ-5D, such was not the case within subgroups presenting with major geriatric conditions.

The Netherlands Organisation of Health Research and Development started in 2008 the Dutch National Care for the Elderly Programme (in Dutch abbreviated as NPO) with the aim to improve the quality of life for the frail older people through better quality of care (health, social, community) which is tailored to the needs and wants of older people. The delivery of good care is related with competent professional behaviour which is inextricably linked to the education of professionals. This article presents an overview of 32 educational programmes developed within the NPO. Within the NPO different educational programmes were developed on relevant themes to improve elderly care. However, the programmes focused mainly on professionals in health care, especially those working in primary care. For nurses and nursing assistants and more or less for physicians also different educational programmes were developed. Educational programmes for paramedics or professionals working in social care, housing or in the municipalities were scarce. This is also the case for specific themes in elderly care like loneliness or (domestic) violence. Moreover, none of the experiments focused on older people or informal care givers. Although 22 of the 32 projects developed educational programmes for different groups, multi - or interdisciplinary education is rare in these programmes. Based on the overview we advise the development of more educational programmes on: target groups which were less or not addressed in the NPO, like professionals in social care and paramedics; multi- or interdisciplinary collaboration; and themes, like loneliness in older people and elder abuse.

Background: Research on new treatments for dementia is gaining pace worldwide in an effort to alleviate this growing health care problem. The optimal evaluation of such interventions, however, calls for a practical and credible patient-reported outcome measure., Objectives: To describe the refinement of the Dementia Quality-of-life Instrument (DQI) and present its revised version., Methods: A prototype of the DQI was adapted to cover a broader range of health-related quality of life (HRQOL) and to improve consistency in the descriptions of its domains. A valuation study was then conducted to assign meaningful numbers to all DQI health states. Pairs of DQI states were presented to a sample of professionals working with people with dementia and a representative sample of the Dutch population. They had to repeatedly select the best DQI state, and their responses were statistically modeled to obtain values for each health state., Results: In total, 207 professionals working with people with dementia and 631 members of the general population completed the paired comparison tasks. Statistically significant differences between the two samples were found for the domains of social functioning, mood, and memory. Severe problems with physical health and severe memory problems were deemed most important by the general population. In contrast, severe mood problems were considered most important by professionals working with people with dementia., Discussion: The DQI is a simple and feasible measurement instrument that expresses the overall HRQOL of people suffering from dementia in a single meaningful number. Current results suggest that revisiting the discussion of using values from the general population might be warranted in the dementia context., (Copyright © 2016 International Society for Pharmacoeconomics and Outcomes Research (ISPOR). Published by Elsevier Inc. All rights reserved.)

Background and Purpose: Despite the positive effects of physical activity on numerous aspects of health, many older adults remain sedentary even after participating in physical activity interventions. Standardized exercise programs do not necessarily bring about the behavioral change that is necessary. Therefore, a patient-centered approach is needed. The purpose of this study was to develop and assess the acceptability and potential effectiveness of the Coach2Move strategy; a physical therapy (PT) approach aimed at improving the long-term level of physical activity in mobility-limited older adults., Methods: The Coach2Move strategy was developed on the basis of 2 systematic literature studies and expert consultations. Multiple focus group meetings and a Delphi procedure were organized to gain consensus on the Coach2Move strategy. Acceptability and potential effectiveness were studied in a pilot study with a pre-/postdesign in which 2 physical therapists and 12 patients participated. To assess acceptability, patients were interviewed, discussion were held with the involved physical therapists was held, and health records were studied. Potential effectiveness was tested measuring the level of physical activity, frailty, quality of life, and mobility before and after treatment., Results: On the basis of the literature study and expert consultations, an algorithm based on the Hypothesis Oriented Algorithm for Clinicians Part II was developed: the Coach2Move approach. Key elements of the Coach2Move approach include an extensive intake using motivational interviewing, clinical reasoning, coaching to increase physical activity and self-management, focusing on meaningful activities, and working according to 3 patient-tailored intervention profiles with a predefined number of sessions. The pilot study showed high appraisal of the strategy by both physical therapists and patients. Moreover, a potential effect on the level of physical activity, frailty, quality of life, and mobility was observed., Discussion and Conclusion: Because the pilot study was not randomized or controlled and included a small sample, no conclusions can be drawn about the effectiveness of the Coach2Move strategy. However, all suggestions made in this study were implemented in an ongoing, randomized controlled trial in which the Coach2Move strategy will be compared to usual care PT. In conclusion, the Coach2Move strategy can be considered acceptable in PT practice and showed potential benefits. The results on the (cost-)effectiveness of this strategy based on a large, randomized, controlled trial are expected in 2014.

Developed as part of the National Care for the Elderly Programme (NPO), TOPICS-MDS is a uniform, national database on the health and wellbeing of the older persons and caregivers who participated in NPO-funded projects. TOPICS-MDS Consortium has gained extensive experience in constructing a standardized questionnaire to collect relevant health care data on quality of life, health services utilization, and informal care use. A proactive approach has been undertaken not only to ensure the standardization and validation of instruments but also the infrastructure for external data requests. Efforts have been made to promote scientifically and socially responsible use of TOPICS-MDS; data has been available for secondary use since early 2014. Through this data sharing initiative, researchers can explore health issues in a broader framework which may have not been possible within individual NPO projects; this broader framework is highly relevant for influencing health policy. In this article, we provide an overview of the development and on-going progress of TOPICS-MDS. We further describe how information derived from TOPICS-MDS can be applied to facilitate future scientific innovations and public health initiatives to improve care for frail older persons and their caregivers.

Medicine for frail elderly patients is complex because of the omnipresent multimorbidity, multicausality, the high risk of adverse effects, lack of an evidence base for guideline-based treatment options, and the predominance of quality of life-related outcomes, rather than mortality and morbidity. This complexity puts off most medical students, while there is a requirement for physicians who like and are well trained to work with frail older persons. Luckily, there are signs of increasing interest, for example in the excellent introduction to geriatric medicine written by author/surgeon Atul Gawande in his last book "Being mortal" (2014). With this commentary, this journal is starting a series presenting new research findings, insights and case studies on frail older patients in order to spread the expanding knowledge base of geriatrics, and suggest tools for working effectively with this fast-growing, complex but rewarding patient group.

Objective: To assess the independent and combined impact of frailty, multi-morbidity, and activities of daily living (ADL) limitations on self-reported quality of life and healthcare costs in elderly people., Design: Cross-sectional, descriptive study., Method: Data came from The Older Persons and Informal Caregivers Minimum DataSet (TOPICS-MDS), a pooled dataset with information from 41 projects across the Netherlands from the Dutch national care for the Elderly programme. Frailty, multi-morbidity and ADL limitations, and the interactions between these domains, were used as predictors in regression analyses with quality of life and healthcare costs as outcome measures. Analyses were stratified by living situation (independent or care home). Directionality and magnitude of associations were assessed using linear mixed models., Results: A total of 11,093 elderly people were interviewed. A substantial proportion of elderly people living independently reported frailty, multi-morbidity, and/or ADL limitations (56.4%, 88.3% and 41.4%, respectively), as did elderly people living in a care home (88.7%, 89.2% and 77,3%, respectively). One-third of elderly people living at home (31.9%) reported all three conditions compared with two-thirds of elderly people living in a care home (68.3%). In the multivariable analysis, frailty had a strong impact on outcomes independently of multi-morbidity and ADL limitations. Elderly people experiencing problems across all three domains reported the poorest quality-of-life scores and the highest healthcare costs, irrespective of their living situation., Conclusion: Frailty, multi-morbidity and ADL limitations are complementary measurements, which together provide a more holistic understanding of health status in elderly people. A multi-dimensional approach is important in mapping the complex relationships between these measurements on the one hand and the quality of life and healthcare costs on the other.

Background: Visual analogue scales (VAS) are often used to measure health-related quality of life (HRQoL). However, when such scales contain ambiguous anchors like "best imaginable health state," they produce answers that are difficult to interpret, as such anchors are interpreted differently by respondents of different age. This phenomenon that people's interpretation of subjective response scales changes in response to changing circumstances is known as scale recalibration. The current study attempts to investigate whether scale recalibration in a patient sample with cognitive limitations and proxies differs from the general population., Methods: The participants in the current study were 151 pairs of community-dwelling patients with dementia and their proxies. They were administered three VASs with different upper anchors; (A) "best imaginable health state," (B) "best imaginable health state for someone your age," and (C) "best imaginable health state for a 25-year-old." From literature, we inferred a conceptual model for the general population that predicts the ordinal relationship of the VASs to be B ≥ A ≥ C. This rank order is tested by repeated measure ANOVA's in the aforementioned populations., Results: VAS scores of patients with dementia were in line with the conceptual model. Proxy VAS scores for assessing patient HRQoL were not in line with the model: A > B > C. In addition, proxy VAS scores for assessing their own health were not in line with the model: A > B > C., Conclusion: Patients with dementia use the VAS in a similar way to the general population. Proxies assessing either patients or themselves differ from the general population.

Background: Conventional techniques to measure health-related quality of life (HRQoL) in a single value or index are complex, require abstract reasoning skills, and are prone to biases (e.g., adaptation). A possible alternative that requires less cognitive demand is Thurstone scaling. The present explorative study investigates the feasibility and concurrent validity of using Thurstone scaling to elicit health-state values in patients with dementia and their proxies., Methods: The participants in the present study were 145 pairs, consisting of community-dwelling persons with dementia and their proxies. We administered the prototype of the dementia quality-of-life instrument (DQI), a dementia-specific HRQoL index instrument, to both patients and proxies. The patient's health state as defined by the DQI was placed randomly among nine other DQI health states and these were ranked from best to worst. These rankings were used for Thurstone scaling. After ranking, the health states were placed on a visual analogue scale (VAS)., Results: Thurstone scaling had a completion rate of 37% for patients and 88% for proxies. Thurstone scaling showed a high correspondence with VAS values. In addition, we identified a trend that shows that patients value most of the evaluated health states systematically lower than proxies., Conclusions: Thurstone scaling proved to be unfeasible for most patients, but feasible for proxies. Its concurrent validity was supported and new insights into patient-proxy discrepancies were discovered., (Copyright © 2012 Elsevier Inc. All rights reserved.)

Objectives: To make an inventory of needs assessment instruments in dementia, to explore the interaction between unmet needs and health-related quality of life (HRQoL) and to relate these to the conceptual model of Maslow's Hierarchy of needs in order to design a dementia-specific model., Methods: Narrative review of literature on (measures of) needs of patients and caregivers and HRQoL determinants important in dementia. Relating these needs to individual goal setting instruments and Maslow's Hierarchy of needs model., Results: The Camberwell Assessment of Needs for the Elderly (CANE) turns out to be a valid tool to assess needs of dementia patients, suitable for research and clinical use. The Carers' Needs Assessment for Dementia (CNA-D) is a valid instrument to assess needs of caregivers. Patients identified significantly fewer needs than (in)formal caregivers. The most important needs, that also determine large part of HRQoL, are need for information; support with regard to symptoms of dementia; social contact and company; and for health monitoring and safety. Goal attainment scaling in dementia is an important but not yet valid outcome measure, with only few data on feasibility in dementia patients., Conclusion: There are several instruments to assess needs of dementia patients and caregivers. Domains of unmet needs and HRQoL overlap. The Hierarchy Model of Needs in Dementia (HMND) offers a new theoretical framework to address the interplay between meeting of needs and improvement of HRQoL in dementia. By identifying unmet needs in dementia-research and focussing on unmet needs in dementia-care, much can be done to improve HRQoL.

The objective of the study was to explore, in a sample of spouses of mild-to-moderate Alzheimer disease patients, predictors of quality of life (QoL) by rating QoL and burden. The authors assessed 97 spouses in a cross-sectional study with the Schedule for the Evaluation of Individual Quality of Life (SEIQoL), Self-Rated Burden scale (SRB), self-perceived stress scale (EDIZ; Ervaren Druk door Informele Zorg/Self-Perceived Pressure from Informal Care), and Zarit Burden Interview (ZBI). Patient cognition was rated with the Mini-Mental State Examination (MMSE). Factors best predicting QoL were analyzed with multiple regression analysis. Eighty-seven (53% male, mean 72 y) fulfilled the SEIQoL internal reliability criteria, and had a mean SEIQoL score of 68.6+/-14.8. Most important QoL domains were condition of patient (31%) and marriage (26%). Caregiver burden scores on SRB, Ervaren Druk door Informele, Zorg, and ZBI were 44.1+/-23.5 (n=67), 4.9+/-2.2 (n=53), and 13.1+/-6.2 (n=53), respectively. Mean patient MMSE score (0 to 30) was 20.3+/-4.2. Spouses experienced lower QoL than Alzheimer disease patients and healthy elderly (historical controls), and perceived moderate levels of burden. Patient cognition is a significant predictor of caregiver QoL. Burden, measured by ZBI, is significantly negatively correlated with SEIQoL. The results underline the importance of implementing health services known to improve QoL and alleviate burden, and to explore new effective interventions.

We conducted a systematic review of the use of quality of life (QoL) measures as outcome in pharmacological and nonpharmacologic intervention trials in patients with Mild Cognitive Impairment or dementia, and their proxies. Randomized controlled trials (RCTs) were identified from a search of the Specialized Register of the Cochrane Dementia and Cognitive Improvement Group in April 2006. We also checked references and systematic reviews. Primary and secondary end points were screened for QoL-scales, and it was registered whether information on responsiveness was provided. We found 117 pharmacologic and 108 nonpharmacologic RCTs. One of the pharmacologic and 4 of the nonpharmacologic studies used QoL as primary outcome, and 2 and 3, respectively, as secondary end point. Altogether QoL was assessed in only 10 (4.4%) of these RCTs, of which 2 reported on responsiveness of QoL. This review provides evidence that QoL-instruments are seldom used as outcome measures in RCTs in dementia and Mild Cognitive Impairment, and that information on responsiveness is scarce. QoL-measures should be applied more often in clinical trials, as currently no disease modifying drugs are available, although there are valid and reliable QoL-measures for dementia that reflect the aims of palliative care and provide transparent information about patient's and caregiver's treatment benefits. We recommend further research efforts aimed at the determination of the minimal important difference in QoL-scales and the responsiveness of QoL-scales. Subsequently, QoL should be measured as relevant end point, both in patients and their proxies, in all clinical trials in dementia.

Objectives: To study whether there are any negative or positive effects of 6 months of increased fluid intake in reasonably healthy elderly men., Design: Randomized trial., Setting: Community-based., Participants: One hundred forty-one healthy participants aged 55 to 75., Intervention: One group was given the advice to increase their daily fluid intake by 1.5 L of water; the other group was given placebo medication (8 mL inactive syrup per day)., Measurements: At 6 months blood sodium, glomerular filtration rate (GFR), blood pressure, and quality of life (QOL) were measured. The changes in water turnover were measured using deuterium., Results: Most subjects did not manage to increase their fluid intake by 1.5 L. The average increase in the intervention group was approximately 1 L. Twenty-four-hour water turnover in the water group was 359 mL (95% confidence interval=171-548) higher than that of the control group at 6-month follow-up. Blood pressure, sodium level, GFR, and QOL did not change significantly in either group during the intervention period. In addition, the cases reporting a worsening on the effect measures were equally distributed over the two study groups., Conclusion: The advice to increase fluid intake by 1.5 L had no negative effects in reasonably healthy men aged 55 to 75.

Background: The increasing interest in early identification of people at risk of developing dementia, has led to the development of numerous models aimed at estimating the likelihood of progression from mild cognitive impairment (MCI) to dementia. It is important to study both the need for and possible outcomes related with such prediction models, including the impact of risk predictions on perceived quality of life (QoL). Objective: This study aimed to quantify the impact that receiving a risk prediction on progression from MCI to dementia has on QoL. Methods: A Discrete Choice Experiment (DCE) and Time Trade Off (TTO) study were performed. Participants completed choice tasks related to dementia prognosis while imagining having MCI. We collected DCE data by an online survey, and TTO data via videoconferencing interviews. DCE data were analyzed using a mixed multinomial logit model and were anchored to a health state utility scale using mean observed TTO valuations. Results: 296 people participated in the DCE and 42 in the TTO. Moderate and high predicted dementia risks were associated with decrements in utility (–0.05 and –0.18 respectively), compared to no prognostic information. Low predicted risk was associated with an increase in utility (0.06), as well as the availability of medication or lifestyle interventions (0.05 and 0.13 respectively). Conclusions: This study shows a significant impact of dementia risk predictions on QoL and highlights the importance of caution when sharing information about expected MCI disease courses. [ABSTRACT FROM AUTHOR]

The aim of the current study was to investigate the health-related quality of life (HRQol) of the family caregiver in MCI, explore possible determinants and study possible differences with mild dementia. This secondary data analysis included 145 persons with MCI and 154 persons with dementia and their family caregivers from two Dutch cohort studies. HRQoL was measured with the VAS of the EuroQol-5D-3L version. Regressions analyses were conducted to examine potential demographic and clinical determinants of the caregiver's HRQoL. The mean EQ5D-VAS in family caregivers of persons with MCI was 81.1 (SD 15.7), and did not significantly differ from family caregivers in mild dementia (81.9 (SD 13.0)). In MCI, patient measurements were not significantly associated with caregiver mean EQ5D-VAS. Concerning caregiver characteristics, being a spouse and a lower educational level were associated with a lower mean EQ5D-VAS (in a multiple linear regression model: unstandardized B −8.075, p = 0.013 and unstandardized B −6.162, p = 0.037 resp.). In mild dementia, the NPI item irritability showed an association with caregiver EQ5D-VAS in bivariate linear regression analyses. Results indicate that especially family caregiver characteristics seem to influence family caregiver HRQoL in MCI. Future research should include other potential determinants such as burden, coping strategies and relationship quality. [ABSTRACT FROM AUTHOR]

Exercise intervention studies in mild cognitive impairment (MCI), a prodromal stage of Alzheimer's disease (AD), have demonstrated inconsistent yet promising results. Addressing the limitations of previous studies, this trial investigated the effects of a 12-month structured exercise program on the progression of MCI. The NeuroExercise study is a multicenter randomized controlled trial across three European countries (Ireland, Netherlands, Germany). Hundred and eighty-three individuals with amnestic MCI were included and were randomized to a 12-month exercise intervention (3 units of 45 min) of either aerobic exercise (AE; n = 60), stretching and toning exercise (ST; n = 65) or to a non-exercise control group (CG; n = 58). The primary outcome, cognitive performance, was determined by an extensive neuropsychological test battery. For the primary complete case (CC) analyses, between-group differences were analyzed with analysis of covariance under two conditions: (1) the exercise group (EG = combined AE and ST groups) compared to the CG and (2) AE compared to ST. Primary analysis of the full cohort (n = 166, 71.5 years; 51.8% females) revealed no between-group differences in composite cognitive score [mean difference (95% CI)], 0.12 [(−0.03, 0.27), p = 0.13] or in any cognitive domain or quality of life. VO2 peak was significantly higher in the EG compared to the CG after 12 months [−1.76 (−3.39, −0.10), p = 0.04]. Comparing the two intervention groups revealed a higher VO2peak level in the aerobic exercise compared to the stretching and toning group, but no differences for the other outcomes. A 12-month exercise intervention did not change cognitive performance in individuals with amnestic MCI in comparison to a non-exercise CG. An intervention effect on physical fitness was found, which may be an important moderator for long term disease progression and warrants long-term follow-up investigations. Clinical Trial Registration: https://clinicaltrials.gov/ct2/show/NCT02913053, identifier: NCT02913053. [ABSTRACT FROM AUTHOR]

Introduction: Patient reported outcome measures (PROMs) have been introduced as standardised outcomes, but have not been implemented widely for disease targeted pathways of care, nor for geriatric patients who prefer functional performance and quality of life. Discussion: We describe innovative multipurpose implementation of PROMs as evidenced by two best practices of PROMs application in geriatric and physiotherapy practice. We show that PROMs can show meaningful outcomes in older subjects' patient journeys, which can at the same time serve individuals and groups of both patients and professionals. Key lesson: PROMs can deliver generic outcomes relevant for older patients, may improve patient-physician relationship, quality of care and prediction of future outcomes in geriatric care, if they are valid, reliable and responsive, but still short and simple. A precondition to make the hard tip from research to practice is that PROMs are carefully positioned in the clinical encounters and in electronic health records. [ABSTRACT FROM AUTHOR]

Background: Exercise interventions to prevent dementia and delay cognitive decline have gained considerable attention in recent years. Human and animal studies have demonstrated that regular physical activity targets brain function by increasing cognitive reserve. There is also evidence of structural changes caused by exercise in preventing or delaying the genesis of neurodegeneration. Although initial studies indicate enhanced cognitive performance in patients with mild cognitive impairment (MCI) following an exercise intervention, little is known about the effect of an extensive, controlled and regular exercise regimen on the neuropathology of patients with MCI. This study aims to determine the effects of an extensive exercise programme on the progression of MCI.Methods/design: This randomised controlled clinical intervention study will take place across three European sites. Seventy-five previously sedentary patients with a clinical diagnosis of MCI will be recruited at each site. Participants will be randomised to one of three groups. One group will receive a standardised 1-year extensive aerobic exercise intervention (3 units of 45 min/week). The second group will complete stretching and toning (non-aerobic) exercise (3 units of 45 min/week) and the third group will act as the control group. Change in all outcomes will be measured at baseline (T0), after six months (T1) and after 12 months (T2). The primary outcome, cognitive performance, will be determined by a neuropsychological test battery (CogState battery, Trail Making Test and Verbal fluency). Secondary outcomes include Montreal Cognitive Assessment (MoCA), cardiovascular fitness, physical activity, structural changes of the brain, quality of life measures and measures of frailty. Furthermore, outcome variables will be related to genetic variations on genes related to neurogenesis and epigenetic changes in these genes caused by the exercise intervention programme.Discussion: The results will add new insights into the prevailing notion that exercise may slow the rate of cognitive decline in MCI.Trial Registration: ClinicalTrials.gov NCT02913053. [ABSTRACT FROM AUTHOR]

Background: Heterogeneous disease trajectories of mild cognitive impairment (MCI) and dementia are frequently encountered in clinical practice, but there is still insufficient knowledge to understand the reasons and mechanisms causing this heterogeneity. In addition to correlates of the disorder, patient characteristics such as their health status, social environment, comorbidities and frailty may contribute to variability in trajectories over time. The current paper outlines the study design and the study population of and provides an overview of the data collected in the Clinical Course of Cognition and Comorbidity in Mild Cognitive Impairment (4C-MCI cohort, n = 315) and Dementia (4C-Dementia cohort, n = 331) Study. Methods: The two complementary longitudinal cohorts part of the 4C study began enrolment in March 2010. Participants were prospectively recruited from three collaborating Dutch Alzheimer Centers, with three annual follow-up assessments after baseline. Extensive neuropsychological assessments, and detailed profiling of comorbidities, health and frailty at each follow up were the key features of the 4C study. As such, the 4C study was designed to study if and how patients' comorbidities and frailty are associated with the course of MCI and dementia measured with a comprehensive and multidimensional set of outcomes including cognition, daily functioning, quality of life, behavioral disturbances, caregiver burden, institutionalization and death and whether the effects of medical health and frailty differ between MCI and dementia stages of cognitive disorders. Conclusion: Sampled in a clinical setting, the 4C study complements population-based studies on neurodegenerative disorders in terms of the type of assessment (e.g. comorbidity, frailty, and functional status were repeatedly assessed). The 4C study complements available clinical cohorts of MCI and dementia patients, because the exclusion criteria were kept to a minimum, to obtain a sample that is representative for the average patient visiting a memory clinic. [ABSTRACT FROM AUTHOR]

Background Despite the well-known health benefits of physical activity, it is a great challenge to stay physically active for frail-older adults with mobility limitations. The aim of this study was to test the (cost-) effectiveness of a patient-centred physical therapy strategy (Coach2Move) in which individualized treatment (motivational interviewing, physical examination, individualized goal setting, coaching and advice on self management, and physical training) is combined to increase physical activity level and physical fitness and, thereby, to decrease the level of frailty. Methods A randomized controlled trial was performed in 13 physical therapy practices with measurements at 3 and 6 months. Eligible patients were aged 70 years or over and had mobility problems (i.e. difficulties with walking, moving, getting up and changing position from bed or chair to standing, or stair climbing). The primary outcome was physical activity (total and moderate intensity) in minutes per day. Secondary outcomes were as follows: frailty, walking speed and distance, mobility, and quality of life. Data were analysed using linear mixed models for repeated measurements. Healthcare costs and quality-adjusted life years (QALYs) were computed and combined using net monetary benefit (NMB) for different willingness to pay thresholds. Data on costs, QALYs, and NMBs were analysed using linear mixed models. Results One hundred and thirty patients participated in this study. At 6 months, the between-group difference was significant for moderate-intensity physical activity in favour of the Coach2Move group [mean difference: 17.9 min per day; 95% confidence interval (CI) 4.0 to 34.9; P = 0.012]. The between-group difference for total physical activity was 14.1 min per day (95% CI −6.6 to 34.9; P = 0.182). Frailty decreased more in the Coach2Move group compared with usual care [mean difference: −0.03 (95% CI: −0.06 to −0.00; P = 0.027)]. Compared with usual treatment, the Coach2Move strategy resulted in cost savings (€849.8; 95% CI: 1607 to 90; P = 0.028), an improvement in QALYs, (0.02; 95% CI: 0.00 to 0.03; P = 0.03), and a higher NMB at every willingness to pay threshold. Conclusions Older adults with mobility problems are able to safely increase physical activity in their own environment and reduce frailty. This study emphasizes both the potential cost-effectiveness of a patient-centred approach in the frail elderly and the importance of physical activity promotion in older adults with mobility limitations. [ABSTRACT FROM AUTHOR]

Background: Index measures for health-related quality of life (HRQoL) quantify the desirability (utility) of a certain health state. The commonly used generic index measure, e.g. EuroQol: EQ-5D, may underestimate relevant areas of specific diseases, resulting in lower validity. Disease-specific index measures on the other hand combine disease-specificity and quantification of perceived quality on several health domains of a certain disease into one single figure. These instruments have been developed for several diseases, but a dementia-specific HRQoL index instrument was not yet available. Facing the increasing individual and societal burden of dementia, specific HRQoL values with metric characteristics are especially useful because they will provide vital information for health outcome research and economic evaluations. Aims of the study: To develop and validate the prototype of a dementia-specific HRQoL index measure: Dementia Quality of life Instrument (DQI), as the first step towards valuation of the dementia health state. Methods: For development of the DQI we created a conceptual framework based on a review of the literature, qualitative interviews with people with dementia and their carers, expert opinion and team discussion. To assess validity we undertook a survey under 241 dementia professionals. Measurements consisted of ranking (1-5) and rating (1-10) of 5 dementia-specific DQI domains (memory, orientation, independence, social activities and mood) and simultaneously rating of 9 DQI-derived health states on a visual analogue scale (VAS). We also performed a cross-sectional study in a large sample of people with very mild to moderate dementia and their caregivers (N = 145) to assess feasibility and concurrent validity. In addition, caregivers valued 10 DQI and 10 EQ-5D + C derived health states of the patient simultaneously on the same VAS. Setting: outpatient clinics, nursing homes and patient residences. Results: All professionals judged the selected DQI domains to be relevant. Differences in ranking and rating behaviors were small. Mood was ranked (≥3.3) and rated (≥8.2) as most, orientation as least important (rank ≤2.6, value 7.5) health domain for dementia. For the validation part of this study the completion rates for all domains were above 98% for patients and 100% for caregivers on patients. A priori hypothesized DQI versus QOL-AD correlations that were significant in both patients and caregivers were: memory/memory, orientation/memory, independence/physical health, social activities/energy and mood/mood. Patient/caregiver inter-rater agreement was low (K < 0.2) for memory/independence, fair (K 0.2-0.4) for orientation/mood, and moderate (K 0.4-0.6) for social activities. Concurrent validity of the DQI with the EQ-5D + C was moderate. The fact that most of the correlations between the domains of these two instruments were low (≤0.40) showed that both instruments measure different elements of health status. As expected, modest correlations (≥0.40) were observed between corresponding domains of the two instruments. Conclusions: Professionals judged all domains as relevant. The DQI prototype proved valid and feasible for patients and caregivers and is appropriate for very mild to moderate dementia. The differences in concurrent correlations with generic health status instruments imply that the dementia-specific DQI health domains indeed provide different information. The finding that patient HRQoL measured with the DQI was lower supports this notion. The new DQI shows comparable psychometric properties to the best available dementia-specific (QOL-AD) and generic (EQ-5D + C) measures. Further research is needed to generate values in the general population for each of the possible DQI states and to derive an algorithm that converts the 5 separate DQI domain scores into one single DQI Index score. Introducing the DQI Index will advance dementia-related HRQoL measurement by overcoming the shortcomings of generic and non-index instruments. This will allow more unequivocal interpretation of subjective dementia HRQoL states in dementia research. [ABSTRACT FROM AUTHOR]

Background: fear of falling (FoF) has great impact on functioning and quality of life of older people, but its effects on gait and balance are largely unknown. Methods: we examined FoF in 100 participants aged ~75 years, using the Activities-specific Balance Confidence scale. Participants with a mean score <67% were assigned to the FoF group. We quantified gait and balance during walking at the preferred velocity with and without a cognitive dual task (arithmetic task and verbal fluency), using an electronic walkway (Gaitrite®) and a trunk accelerometer (SwayStar®), Primary outcome measures were gait velocity, stride-length and stride-time variability, as well as mediolateral angular displacement and velocity. Results: gait velocity was significantly lower (P < 0.05) and stride-length and stride-time variability were significantly higher (P < 0.05) in the FoF group. However, after standardisation for gait velocity, differences became non-significant. Mediolateral angular displacement and velocity were not associated with FoF. We found no difference between the FoF and no-FoF group with respect to the dual-task effect on gait and balance variables. Conclusions: the lower gait velocity in the FoF group may be a useful adaptation to optimise balance, rather than a sign of decreased balance control. The ability to attend to a secondary task during walking is not influenced by FoF. [ABSTRACT FROM AUTHOR]

Objective: To identify determinants of older patients' perceptions of involvement in decision-making on colorectal (CRC) or pancreatic cancer (PC) treatment, and to compare these with determinants of observers' perceptions.Methods: Patients' perceptions of involvement were constructed by the 9-item SDM questionnaire (SDM-Q-9) and a Visual Analogue Scale for Involvement (VAS-I). Observers' perceptions were constructed by the OPTION5, OPTION12, and MAPPIN'SDM. Convergent validities were calculated between the patient-sided and observer instruments using Spearman's correlation coefficient. Linear regression was used to identify determinants per criterion.Results: 58 CRC and 22 PC patients were included (mean age: 71.8 ± 5.2 years, 45.0% female). No significant correlations were found between the patient-sided and observer instruments. Patients' impression of involvement was influenced by patient characteristics such as quality of life and satisfaction, while observers' perceptions mainly referred to encounter characteristics such as the mean duration of consultations and general communication skills.Conclusion: Due to evident differences in determinants, older CRC/PC patients' and observers' perceptions of involvement should both be collected in evaluating the quality of medical decision-making.Practice Implications: General communication skills should be integrated in SDM training interventions. New SDM measurement tools for patients are needed to sufficiently discriminate between the constructs of involvement and satisfaction. [ABSTRACT FROM AUTHOR]

Introduction:In 2008, the Ministry of Health, Welfare and Sport commissioned the National Care for the Elderly Programme. While numerous research projects in older persons’ health care were to be conducted under this national agenda, the Programme further advocated the development of The Older Persons and Informal Caregivers Survey Minimum DataSet (TOPICS-MDS) which would be integrated into all funded research protocols. In this context, we describe TOPICS data sharing initiative (www.topics-mds.eu). Materials and Methods:A working group drafted TOPICS-MDS prototype, which was subsequently approved by a multidisciplinary panel. Using instruments validated for older populations, information was collected on demographics, morbidity, quality of life, functional limitations, mental health, social functioning and health service utilisation. For informal caregivers, information was collected on demographics, hours of informal care and quality of life (including subjective care-related burden). Results:Between 2010 and 2013, a total of 41 research projects contributed data to TOPICS-MDS, resulting in preliminary data available for 32,310 older persons and 3,940 informal caregivers. The majority of studies sampled were from primary care settings and inclusion criteria differed across studies. Discussion:TOPICS-MDS is a public data repository which contains essential data to better understand health challenges experienced by older persons and informal caregivers. Such findings are relevant for countries where increasing health-related expenditure has necessitated the evaluation of contemporary health care delivery. Although open sharing of data can be difficult to achieve in practice, proactively addressing issues of data protection, conflicting data analysis requests and funding limitations during TOPICS-MDS developmental phase has fostered a data sharing culture. To date, TOPICS-MDS has been successfully incorporated into 41 research projects, thus supporting the feasibility of constructing a large (>30,000 observations), standardised dataset pooled from various study protocols with different sampling frameworks. This unique implementation strategy improves efficiency and facilitates individual-level data meta-analysis. [ABSTRACT FROM AUTHOR]

The article reports a study which examined the effectiveness of post-diagnosis treatment and coordination of care for patients with dementia and their caregivers by memory clinics compared with care provided by general practitioners. The results revealed that there was no difference with regard to post-diagnosis treatment and coordination of care for patients with dementia between memory clinics and general practitioners.

Objective: To assess whether a multifactorial fall prevention program was more effective than usual geriatric care in preventing falls and reducing fear of falling in frail community-dwelling older fallers, with and without cognitive impairment, and in alleviating subjective caregiver burden in caregivers. Design, Setting, and Participants: A randomized, 2 parallel-group, single-blind, multicenter trial conducted in 36 pairs of frail fallers, who were referred to a geriatric outpatient clinic after at least 1 fall in the past 6 months, and their informal caregivers. Intervention: Groups of 5 pairs of patients and caregivers received 10 twice-weekly, 2-hour sessions with physical and psychological components and a booster session. Measurements: The primary outcome was the fall rate during a 6-month follow-up. Additionally, we measured fear of falling and subjective caregiver burden. Data on the secondary outcome measures were collected at baseline, directly after, and at 3 and 6 months after the last session of the intervention. Results: Directly after the intervention and at the long-term evaluation, the rate of falls in the intervention group was higher than in the control group, although these differences were not statistically significant (RR = 7.97, P = .07 and RR = 2.12, P = .25, respectively). Fear of falling was higher in the intervention group, and subjective caregiver burden did not differ between groups. Conclusion: Although we meticulously developed this pairwise multifactorial fall prevention program, it was not effective in reducing the fall rate or fear of falling and was not feasible for caregivers, as compared with regular geriatric care. Future research initiatives should be aimed at how to implement the evidence-based principles of geriatric fall prevention for all frail fallers rather than developing more complex interventions for the frailest. [Copyright &y& Elsevier]

Abstract: Objectives: The authors’ first aim was to study the effects of raloxifene and tibolone on body mass density, handgrip strength, and other secondary frailty components. The secondary aim was to compare the effects of raloxifene and tibolone and their safety in older women. Design/Setting/Participants: A randomized, double-blind, double- dummy, placebo-controlled trial conducted in an academic hospital in the Netherlands among 318 community living women aged >70 were randomized; 290 received the allocated intervention: 97 placebo, 101 raloxifene, and 92 tibolone. Interventions: Randomization was made to raloxifene 60 mg, tibolone 1.25 mg, or placebo. Assessments were performed at baseline and after 3, 6, 12, and 24 months. The study was conducted from July 2003 to January 2008. The tibolone group stopped earlier in February 2006, because of results of the Long-Term Intervention on Fractures with Tibolone study, suggesting an increased risk of cerebrovascular accident. Measurements: Primary endpoints were body mass density and handgrip strength. Secondary endpoints were muscle power and strength, mobility measures, body composition, verbal memory, mental processing speed, anxiety, mood, and quality of life. Results: Tibolone and raloxifene had similar body mass density-effect sizes (d = .24–.47), and had no effect on handgrip muscle strength. For the 15 words test the effect on direct recall of concrete and abstract words (d = .40 and d =.27, respectively) and on delayed recall of concrete words (d = .77) were significantly higher in the raloxifene group compared to placebo and to tibolone. In the raloxifene group the health status (EuroQol VAS (0–100) was improved 2.4 points [95% CI 0.5–4.2; P = .012] over 24 months. Conclusion: In women >70 years old, raloxifene and tibolone significantly and similarly increased body mass density but not muscle strength. Raloxifene had also positive effects on verbal memory and health status. New research with selective estrogen receptor modulators like raloxifene might be promising on frailty endpoints in elderly women. Trial registration number: Nederlands Trial Register: 1232 [Copyright &y& Elsevier]