Caregiver Burden and Quality of Life Across Alzheimer's Disease Severity Stages.

INTRODUCTION: The objective is to estimate the caregiver burden in terms of informal care time, health-related quality of life (HRQoL), and societal costs by disease severity (mild, moderate, or severe) and living situation (community-dwelling or institutionalized) of persons with AD (PwAD); and PwAD HRQoL. METHODS: Caregivers were recruited through an online panel provider in the Netherlands. The survey used validated instruments, including iMTA Valuation of Informal Care Questionnaire, CarerQoL, and EQ-5D-5L. RESULTS: One hundred two caregivers participated. PwADs received, on average, 26 hours of informal care per week. Informal care costs were higher for community-dwelling PwADs compared with institutionalized PwADs (€480 and €278, respectively). On the EQ-5D-5L, caregivers scored on average 0.797, reflecting a utility decrement of 0.065 compared with an age-matched population. Proxy-rated utility scores for PwADs decreased with increasing disease severity (0.455, 0.314, and 0.212 for mild, moderate, and severe AD, respectively). Institutionalised PwADs had lower utility scores than community-dwelling PwADs (0.590 vs. 0.421). There was no difference in informal care time, societal costs, CarerQol scores, and caregiver EQ-5D-5L scores between disease severities. CONCLUSION: The burden of AD extends to caregivers in terms of HRQoL and time investment, regardless of the disease severity of the target population. These impacts should be incorporated into the evaluation of new AD interventions.

Determinants of Cross-Sectional and Longitudinal Health-Related Quality of Life in Memory Clinic Patients Without Dementia.

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.

Impact of Untimely Access to Formal Care on Costs and Quality of Life in Community Dwelling People with Dementia.

BACKGROUND: Access to formal care is not always timely and a better understanding on the impact of untimely access is needed. OBJECTIVE: To examine, from a societal perspective, the impact of untimely access to formal care in terms of total costs and quality of life over one year in community dwelling people with dementia. METHODS: Within the Actifcare study, needs, resource use, and quality of life were observed for one year in a cohort of 451 community dwelling people with dementia in 8 European countries. Untimely access to care was operationalized as having at least one unmet need for care identified by the Camberwell Assessment of Need for the Elderly (CANE) instrument. Two regression models were built for both total costs and quality of life measured by the EQ-5D-5L, one using sum of unmet needs and one using a predefined selection of need items. RESULTS: Unmet needs were not associated with higher total costs but they were associated with a lower quality of life of people with dementia. Of all CANE items, only an unmet need for "company" was significantly related to lower total costs. CONCLUSION: Total costs did not seem to differ between participants with unmet and met needs. Only few associations between specific unmet needs and costs and quality of life were found. Furthermore, quality of life of people with dementia decreases when multiple unmet needs are experienced, indicating that assessing and meeting needs is important to improve quality of life.

Added Prognostic Value of Cerebrospinal Fluid Biomarkers in Predicting Decline in Memory Clinic Patients in a Prospective Cohort.

BACKGROUND: Limited information is available on short-term prognosis of Alzheimer's disease (AD) biomarkers in cerebrospinal fluid (CSF) in addition to routine diagnostic workup. OBJECTIVE: This study aims to investigate the added prognostic value of AD CSF biomarkers. METHODS: In a prospective cohort study, clinical experts predicted cognitive and functional symptoms in 114 memory clinic patients by assessing comprehensive routine diagnostic test information (patient history, and physical, neurological, psychiatric, neuropsychological, and MRI examinations), without and with CSF biomarkers. The reference standard was the 'observed clinically relevant decline' using baseline and 1- and 2-year follow-up information. RESULTS: Decline over a 2-year period was observed in 51% of all participants (3% in SMC, 48% in MCI, 90% in mild dementia). In the total sample, the accuracy of predicted decline did not differ significantly between routine assessment without (79% correctly predicted) and with (74% correctly predicted) CSF biomarkers. Subgroup analyses revealed 25 (83%) correct predictions in SMC, 30 (68%) in MCI, and 35 (88%) in dementia without the use of CSF; and 21 (70%), 27 (61%), and 36 (90%), respectively, with the use of CSF in addition to the routine assessment. CONCLUSION: AD CSF biomarkers did not increase accuracy of 2-year prognosis of cognitive and functional decline when added to routine diagnostic workup. This suggests that the standard diagnostic workup without CSF biomarkers allows fairly accurate predictions for the short-term course of symptoms. Routine AD biomarkers in CSF have limited prognostic value over 2 years in persons with a suspected cognitive disorder.

Combinations of Service Use Types of People With Early Cognitive Disorders.

OBJECTIVES: Understanding which persons most likely use particular combinations of service types is important as this could lead to a better understanding of care pathways. The aim of this study is to identify combinations of service use within a sample of community-dwelling people with mild cognitive impairment (MCI) and dementia and identify factors related to these service use combinations. METHODS: A latent class analysis performed at baseline on a merged dataset (n = 530) was used to classify care recipients based on following service use types: general practitioner visits, physiotherapist visits, hospital outpatient specialist visits, emergency room visits, hospital inpatient visits with stay over, day care visits, use of domestic homecare, use of personal homecare, and informal care on (instrumental) activities of daily living. Multinomial logistic regression was performed to identify factors associated with service use combinations using clinical characteristics of the care recipient and demographic characteristics of the care recipient and caregiver. RESULTS: Three service use classes were identified; a formal homecare class (10% of participants), an informal care class (46% of participants), and a low user class (44% of participants). Factors increasing the likelihood of being in the formal homecare class compared with the low service use class included a diagnosis of MCI or dementia, activities of daily living impairment, older age of the care recipient, and care recipient not living together with the caregiver. CONCLUSIONS: Besides a diagnosis of MCI or dementia, other factors (activities of daily living impairment, age, and living situation) were associated with service use. We recommend using these factors alongside the diagnostic label for care indication.

Early cost-utility analysis of general and cerebrospinal fluid-specific Alzheimer's disease biomarkers for hypothetical disease-modifying treatment decision in mild cognitive impairment.

INTRODUCTION: The study aimed to determine the room for improvement of a perfect cerebrospinal fluid (CSF) biomarker and the societal incremental net monetary benefit of CSF in subjects with mild cognitive impairment (MCI) assuming a hypothetical disease-modifying Alzheimer's disease (AD) treatment. METHODS: A decision model compared current practice to a perfect biomarker and to two strategies positioning CSF as add-on test when current practice concluded the presence or absence of AD. RESULTS: The simulated MCI population was aged on average 68.3 and 49% had AD. The room for improvement by the perfect CSF test was 0.39 quality adjusted life years, €33,622 ($43,372) savings, 2.0 potential beneficial treatment years, and 1.3-year delay in dementia conversion. DISCUSSION: The results indicated more potential benefit from a biomarker positioned to verify subjects who are not expected to have AD (i.e., to prevent undertreatment) rather than to verify subjects expected to have AD (prevent overtreatment). Sensitivity analyses explored different CSF positions.

The benefit of a geriatric nurse practitioner in a multidisciplinary diagnostic service for people with cognitive disorders.

BACKGROUND: The aim of the study was to evaluate whether adding a geriatric nurse practitioner (GNP) to an outpatient diagnostic multidisciplinary facility for patients with cognitive disorders (Diagnostic Observation Center for PsychoGeriatry, DOC-PG) could improve quality of care. DOC-PG combines hospital diagnostics and care assessment from a community mental health team and provides the general practitioner (GP) with advice for treatment and management. In a previous study, we found that 28.7% of the advice made by this service was not followed up on by the GP. METHODS: Two cohorts were studied: a group of patients with added GNP (n = 114) and a historical reference sample (n = 137). Both groups followed the same diagnostic protocol and care approach, but, in the GNP group, a care coordinator was added in order to communicate the advice from the DOC-PG to the GP. The primary outcome was the concordance rate of GPs regarding the advice. At the patient level, health-related quality of life (HRQoL) was assessed. Self-Rated Burden and care-related quality of life were measured at the informal caregiver level. Measures were conducted immediately after DOC-PG diagnosis and after 6 and 12 months. Univariate analyses, logistic regression analyses, and mixed model multilevel analyses were used to test differences between both groups. RESULTS: Total concordance rates were significantly higher in the GNP group compared to the reference sample (82.1 and 71.3%, respectively; p < 0.001). No improvement in patient HRQoL was identified. Among the informal caregivers, a significant reduction of Self-Rated Burden was found in the GNP group at 12 months (adjusted mean difference -1.724, 95% CI -2.582 to -0.866; p < 0.001). CONCLUSIONS: Adding a GNP to an outpatient diagnostic multidisciplinary facility for patients with cognitive disorders may improve the GP concordance rate of the advice from the DOC-PG and reduce subjective burden of the informal caregiver.

Qualitative study on needs and wishes of early-stage dementia caregivers: the paradox between needing and accepting help.

BACKGROUND: Early individualized interventions for informal dementia caregivers can prevent overburdening in the later stages. However, the needs of early-stage dementia caregivers (EDC) remain largely unknown. This study aimed to explore the needs and wishes and need for care of EDC to maximize the benefit of potential programs for EDC and tailor interventions accordingly. METHODS: Four focus group interviews with 28 informal caregivers of people with dementia (PwD) were analyzed using inductive content analysis. Both EDC and caregivers in the later stages were included to compare perceived EDC needs from different points in the caregiver career. RESULTS: Four themes were identified: the early-stage needs paradox, barriers in acceptance, facilitators in acceptance, and a transition from loss to adaptation. The retrospective view provided by later-stage caregivers differed from the view of EDC; EDC struggled with acknowledging needs due to fear of stigma and low acceptance. EDC stressed the importance of acceptance as a prerequisite for adequate adaptation, but were hindered by lack of knowledge, difficulty acknowledging changes, and focus on loss. In contrast, better understanding of the disease, increasing personal time, structuring ones day, and using appropriate humor can reduce negative communication, increase positive encounters and caregiver-confidence, contributing to positive interaction with the care recipient and an increase in well-being. CONCLUSIONS: Early therapeutic interventions could help caregivers identify their needs, increase knowledge about changes in roles and relationship reciprocity, and focus on enhancement of the positive, intact experiences to prevent caregiver burden.

Optimizing the use of expert panel reference diagnoses in diagnostic studies of multidimensional syndromes.

BACKGROUND: In the absence of a gold standard, a panel of experts can be invited to assign a reference diagnosis for use in research. Available literature offers limited guidance on assembling and working with an expert panel for this purpose. We aimed to develop a protocol for an expert panel consensus diagnosis and evaluated its applicability in a pilot project. METHODS: An adjusted Delphi method was used, which started with the assessment of clinical vignettes by 3 experts individually, followed by a consensus discussion meeting to solve diagnostic discrepancies. A panel facilitator ensured that all experts were able to express their views, and encouraged the use of argumentation to arrive at a specific diagnosis, until consensus was reached by all experts. Eleven vignettes of patients suspected of having a primary neurodegenerative disease were presented to the experts. Clinical information was provided stepwise and included medical history, neurological, physical and cognitive function, brain MRI scan, and follow-up assessments over 2 years. After the consensus discussion meeting, the procedure was evaluated by the experts. RESULTS: The average degree of consensus for the reference diagnosis increased from 52% after individual assessment of the vignettes to 94% after the consensus discussion meeting. Average confidence in the diagnosis after individual assessment was 85%. This did not increase after the consensus discussion meeting. The process evaluation led to several recommendations for improvement of the protocol. CONCLUSION: A protocol for attaining a reference diagnosis based on expert panel consensus was shown feasible in research practice.

Diagnosing Alzheimer's disease: a systematic review of economic evaluations.

BACKGROUND: The objective of this study is to systematically review the literature on economic evaluations of interventions for the early diagnosis of Alzheimer's disease (AD) and related disorders and to describe their general and methodological characteristics. We focused on the diagnostic aspects of the decision models to assess the applicability of existing decision models for the evaluation of the recently revised diagnostic research criteria for AD. METHODS: PubMed and the National Institute for Health Research Economic Evaluation database were searched for English-language publications related to economic evaluations on diagnostic technologies. Trial-based economic evaluations were assessed using the Consensus on Health Economic Criteria list. Modeling studies were assessed using the framework for quality assessment of decision-analytic models. RESULTS: The search retrieved 2109 items, from which eight decision-analytic modeling studies and one trial-based economic evaluation met all eligibility criteria. CONCLUSIONS: Diversity among the study objective and characteristics was considerable and, despite considerable methodological quality, several flaws were indicated. Recommendations were focused on diagnostic aspects and the applicability of existing models for the evaluation of recently revised diagnostic research criteria for AD.

Determinants of care costs of patients with dementia or cognitive impairment.

INTRODUCTION: Dementia causes a high burden on patients, caregivers, and societies. Decision analytic models to support allocation of resources are often developed making use of cost-of-illness (COI) studies. However, current COI study estimates are highly variable due to care setting and methodological issues. We aim to explore variables explaining the variation of (formal and informal) health care costs of cognitive disorders, using a broad spectrum of variables, including patient, caregiver, and social context variables. METHODS: A bottom-up COI study design was used in which a societal viewpoint and a validated method to measure and value informal care was applied. Data were analyzed using univariate, multivariate, and forward regression analyses. RESULTS: The average 1-year health care sector costs were &OV0556;26,140 ($34,505 or £17,775) and &OV0556;11,931 ($15,749 or £8113) for patient and family. The analyses indicated that cognitive functioning, caregiver burden, patient sex, and instrumental activities of daily living were significantly associated with care costs independently. CONCLUSIONS: Cognitive functioning and instrumental activities of daily living are important variables to include in health care decision models. We recommend also including caregiver burden and patient sex in decision models for health policy decision makers to fully reflect the heterogeneity of the disease progression of cognitive disorders.

Impact of molecular imaging on the diagnostic process in a memory clinic.

BACKGROUND: [(11)C]Pittsburgh compound B ([(11)C]PIB) and [(18)F]-2-fluoro-2-deoxy-D-glucose ([(18)F]FDG) PET measure fibrillar amyloid-ß load and glucose metabolism, respectively. We evaluated the impact of these tracers on the diagnostic process in a memory clinic population. METHODS: One hundred fifty-four patients underwent paired dynamic [(11)C]PIB and static [(18)F]FDG PET scans shortly after completing a standard dementia screening. Two-year clinical follow-up data were available for 39 patients. Parametric PET images were assessed visually and results were reported to the neurologists responsible for the initial diagnosis. Outcome measures were (change in) clinical diagnosis and confidence in that diagnosis before and after disclosing PET results. RESULTS: [(11)C]PIB scans were positive in 40 of 66 (61%) patients with a clinical diagnosis of Alzheimer's disease (AD), 5 of 18 (28%) patients with frontotemporal dementia (FTD), 4 of 5 (80%) patients with Lewy body dementia, and 3 of 10 (30%) patients with other dementias. [(18)F]FDG uptake patterns matched the clinical diagnosis in 38 of 66 (58%) of AD patients, and in 6 of 18 (33%) FTD patients. PET results led to a change in diagnosis in 35 (23%) patients. This only occurred when prior diagnostic certainty was <90%. Diagnostic confidence increased from 71 ± 17% before to 87 ± 16% after PET (p < .001). Two-year clinical follow-up (n = 39) showed that [(11)C]PIB and [(18)F]FDG predicted progression to AD for patients with mild cognitive impairment, and that the diagnosis of dementia established after PET remained unchanged in 96% of patients. CONCLUSIONS: In a memory clinic setting, combined [(11)C]PIB and [(18)F]FDG PET are of additional value on top of the standard diagnostic work-up, especially when prior diagnostic confidence is low.

Diagnostic and economic evaluation of new biomarkers for Alzheimer's disease: the research protocol of a prospective cohort study.

BACKGROUND: New research criteria for the diagnosis of Alzheimer's disease (AD) have recently been developed to enable an early diagnosis of AD pathophysiology by relying on emerging biomarkers. To enable efficient allocation of health care resources, evidence is needed to support decision makers on the adoption of emerging biomarkers in clinical practice. The research goals are to 1) assess the diagnostic test accuracy of current clinical diagnostic work-up and emerging biomarkers in MRI, PET and CSF, 2) perform a cost-consequence analysis and 3) assess long-term cost-effectiveness by an economic model. METHODS/DESIGN: In a cohort design 241 consecutive patients suspected of having a primary neurodegenerative disease are approached in four academic memory clinics and followed for two years. Clinical data and data on quality of life, costs and emerging biomarkers are gathered.Diagnostic test accuracy is determined by relating the clinical practice and new research criteria diagnoses to a reference diagnosis. The clinical practice diagnosis at baseline is reflected by a consensus procedure among experts using clinical information only (no biomarkers). The diagnosis based on the new research criteria is reflected by decision rules that combine clinical and biomarker information. The reference diagnosis is determined by a consensus procedure among experts based on clinical information on the course of symptoms over a two-year time period.A decision analytic model is built combining available evidence from different resources among which (accuracy) results from the study, literature and expert opinion to assess long-term cost-effectiveness of the emerging biomarkers. DISCUSSION: Several other multi-centre trials study the relative value of new biomarkers for early evaluation of AD and related disorders. The uniqueness of this study is the assessment of resource utilization and quality of life to enable an economic evaluation. The study results are generalizable to a population of patients who are referred to a memory clinic due to their memory problems. TRIAL REGISTRATION: NCT01450891.

Rational decision-making about treatment and care in dementia: a contradiction in terms?

OBJECTIVE: To gain caregivers' insights into the decision-making process in dementia patients with regard to treatment and care. METHODS: Four focus group interviews (n=29). RESULTS: The decision-making process consists of three elementary components: (1) identifying an individual's needs; (2) exploring options; and (3) making a choice. The most important phase is the exploration phase as it is crucial for the acceptance of the disease. Furthermore, the decision is experienced more as an emotional choice than a rational one. It is influenced by personal preferences whereas practical aspects do not seem to play a substantial role. CONCLUSION: Several aspects make decision-making in dementia different from decision-making in the context of other chronic diseases: (1) the difficulty accepting dementia; (2) the progressive nature of dementia; (3) patient's reliance on surrogate decision-making; and (4) strong emotions. Due to these aspects, the decision-making process is very time-consuming, especially the crucial exploration phase. PRACTICE IMPLICATIONS: A more active role is required of both the caregiver and the health care professional especially in the exploration phase, enabling easier acceptance and adjustment to the disease. Acceptance is an important condition for reducing anxiety and resistance to care that may offer significant benefits in the future.

Predictive factors for the objective burden of informal care in people with dementia: a systematic review.

BACKGROUND: Informal care plays a substantial role in the provision of total care in dementia. Several reviews have been published on the predictive factors of subjective burden; however, such a review lacks information on objective burden, which refers to the amount and/or costs of informal care. OBJECTIVES: The objectives of this study were to (1) give an overview of the predictive factors that are associated with the objective burden of informal care; (2) discuss whether these factors are similar to the predictive factors of subjective burden; and (3) examine whether they are modifiable. DESIGN: The literature in a number of international databases was systematically searched. Methodological quality and level of certainty were assessed. RESULTS: Ten studies were identified as relevant for the purpose of this review, describing a total of 39 predictive factors. Three factors (behavioral problems and impairments regarding daily functioning and cognition) were considered to be predictors of objective burden. Three factors were not related; 12 were potential predictors; and the results of the remaining 22 factors were inconclusive. CONCLUSIONS: Many factors were found to be (potential) predictors of objective burden, reflecting its complex nature. Objective and subjective burdens are 2 different relevant aspects of informal care. Interventions aimed at countering behavioral problems and impairments regarding daily functioning could reduce objective burden.

Empowered or overpowered? Service use, needs, wants and demands in elderly patients with cognitive impairments.

BACKGROUND: Examination of clinical practice reveals that current treatment options are often not sufficiently utilized by patients suffering from dementia or mild cognitive impairment. OBJECTIVE: This study aimed to investigate to what extent and in what way these patients utilize the available treatment options, as well as to identify factors and reasons that play a role in the non-utilization of these options. METHODS: Semi-structured interviews by telephone were held with the patients' caregivers. RESULTS: Counseling, medication, activities and home care were the options that were most frequently utilized by the 252 patients and caregivers who were included in the study. Group guidance and admissions were the main treatment categories that had not been utilized (although they were proposed). The most important reasons given were refusal by the patient and the fact that help was not necessary yet according to the caregiver. Burden of care and cognition were the most important factors in predicting which of the treatment options were not utilized. CONCLUSIONS: Most patients and caregivers are not aware of the treatment options available to them. Awareness of these options is necessary to avoid situations in which patients and caregivers find themselves with their backs against the wall and the need for care support has become an acute necessity. Health care professionals should play an important role with regard to this empowerment.

Economic evaluation of an integrated diagnostic approach for psychogeriatric patients: results of a randomized controlled trial.

CONTEXT: Because of the increasing number of elderly people with dementia, the costs of dementia and dementia care are expected to grow rapidly in the coming decades. Cost-effectiveness results are relevant for decision making about new strategies in dementia care. OBJECTIVE: To evaluate the cost-effectiveness of an integrated multidisciplinary diagnostic facility for diagnosing dementia in ambulatory psychogeriatric patients. DESIGN: Randomized controlled trial with an economic evaluation component. SETTING: The Maastricht Evaluation of a Diagnostic Intervention for Cognitively Impaired Elderly, Maastricht University Hospital, Maastricht, the Netherlands. PATIENTS: A total of 137 patients who received care in the multidisciplinary diagnostic facility and 93 who received usual care. MAIN OUTCOME MEASURES: Quality-adjusted life-years (QALYs) as the main outcome measure and cognition and behavioral problems as secondary outcome measures. RESULTS: Compared with patients receiving usual care, patients who visited the diagnostic facility gained a mean 0.05 QALY at the extra cost of euro65. The incremental cost per QALY amounted to euro1267. This point estimate lies beneath commonly accepted thresholds and is within an acceptable range of uncertainty. With regard to the secondary analyses, cost-effectiveness results showed a substantial amount of uncertainty and were therefore indecisive. CONCLUSION: On the basis of the main cost-per-QALY analysis, the use of the integrated multidisciplinary diagnostic facility is cost-effective for the diagnosis and management of dementia in ambulatory patients.

Integrated multidisciplinary diagnostic approach for dementia care: randomised controlled trial.

BACKGROUND: An integrated multidisciplinary approach to dementia is often recommended but has rarely been evaluated. AIMS: To evaluate the clinical effects of an integrated multidisciplinary diagnostic facility for psychogeriatric patients. METHOD: Patients suspected of having complex psychogeriatric problems were randomly allocated to the intervention (n=137) or to treatment as usual (n=93). They were assessed at baseline, and at 6 months and 12 months follow-up by means of personal interviews with the patient's proxy. The primary outcome was health-related quality of life, assessed using the visual analogue scale (VAS) of the EuroQd measure, EQ-5D. RESULTS: Health-related quality of life had improved at 6 months in the intervention group, whereas that of the control group had decreased. Furthermore, more patients in the intervention group experienced a clinically relevant improvement of 10 points or more on the VAS at both follow-up measurements. CONCLUSIONS: An integrated multidisciplinary approach improves dementia care.

Relationship between measures of dementia severity and observation of daily life functioning as measured with the Assessment of Motor and Process Skills (AMPS).

BACKGROUND: Cognitive impairment is mostly regarded as the core symptom of dementia, but several other domains (such as daily functioning) are equally relevant to assess the severity of dementia. The relationship between these domains is unclear. The Assessment of Motor and Process Skills (AMPS) is a relatively unexplored instrument in people with dementia, measuring severity by direct observation. OBJECTIVE: To study the relationship between the AMPS and scores on several commonly used outcome measures for the assessment of dementia severity, and to examine the possible influence of neuropsychiatric symptoms on these relationships in patients with cognitive disorders. METHODS: Cross-sectional data of 118 patients with cognitive disorders were used; data on cognition (Mini-Mental State Examination, MMSE; CAMCOG), global severity (Global Deterioration Scale, GDS), daily life functioning (Instrumental Activities of Daily Living, IADL), and neuropsychiatric symptoms (Neuropsychiatric Inventory, NPI) were collected and analyzed using correlation and regression analyses. Different combinations of the severity measures were tested for their ability to predict the AMPS process ability scores. RESULTS: Scores on the MMSE, CAMCOG and GDS were moderately associated with the AMPS process ability score. These measures explained between 27 and 44% of the variance in the AMPS score. The presence of apathy influenced the association between the cognitive measures and the AMPS score. CONCLUSION: Commonly used measures of dementia severity are only moderately associated with observation of performance on daily activities. This underlines the need for direct observation of daily activities in dementia patients. This relationship between several approaches of assessing dementia severity needs further study.

Performance of the EQ-5D and the EQ-5D+C in elderly patients with cognitive impairments.

BACKGROUND: The EQ-5D is a reliable tool for measuring Health-Related Quality of Life (HRQoL). However, concern has been expressed that it may ignore elements of HRQoL, particularly cognition. In response to this concern, the EQ-5D has been extended with a cognitive dimension (EQ-5D+C). The aim of this study was to compare the performance of the EQ-5D and the EQ-5D+C in elderly patients with cognitive impairments by assessing their construct validity and responsiveness. METHODS: Data from the MEDICIE study (n = 196) were used, in which all questionnaires were rated by proxies. RESULTS: Regarding construct validity, we found similar correlations between the EQ-5D and the Mini Mental State Examination (MMSE) and between the EQ-5D+C and the MMSE. Furthermore, both the EQ-5D and the EQ-5D+C were responsive to changes in the MMSE, with the EQ-5D performing slightly better. CONCLUSION: We conclude that the EQ-5D performs well for evaluating HRQoL in a population with cognitive impairments. Based on the results of this explorative study, it does not seem necessary to adjust the current classification system by adding a cognitive dimension. However, in order to compare both instruments regarding utility values, it is necessary to develop a new scoring algorithm for the EQ-5D+C by conducting a general population study. Considering the explorative nature of this study, it is recommended that more aspects of the validity of both the EQ-5D and the EQ-5D+C are explored in patients with cognitive impairments using a more tailored study design.